Consideration of Bill 19, An Act to repeal the Advocacy Act, 1992, revise the Consent to Treatment Act, 1992, amend the Substitute Decisions Act, 1992 and amend other Acts in respect of related matters / Projet de loi 19, Loi abrogeant la Loi de 1992 sur l'intervention, révisant la Loi de 1992 sur le consentement au traitement, modifiant la Loi de 1992 sur la prise de décisions au nom d'autrui et modifiant d'autres lois en ce qui concerne des questions connexes.
The Chair (Mr Gerry Martiniuk): Good morning, everyone. This is the third day of deliberations of the standing committee on administration of justice on Bill 19. Our first presenter is the Christian Science Committee on Publication, Mr Lyle Young, if you'd identify yourself for the purposes of Hansard.
Mr Lyle Young: Good morning. I'm Lyle Young. I am the Christian Science Committee on Publication for Ontario, the public affairs position in our church, a position that has existed since early in the century when one of the meanings of the word "committee" was a single person charged with a responsibility. Beside me is Gwen Sampson, a member of Fifth Church of Christ, Scientist, Toronto, who will be sharing a personal experience.
I'm grateful to appear before the committee today. Studying in Buenos Aires, Argentina, in 1983, the year Argentines got their democracy back, gave me a great respect for the democratic process. Working as a parliamentary intern in Ottawa in 1985-86 increased that respect. I'm glad that the Ontario Legislature internship program still exists.
A little bit more background about myself: In 1987 I became a full-time Christian Science practitioner; that is, someone who gives his or her full time to helping others through prayer. In addition to maintaining my public practice in Ottawa, I became the Committee on Publication in June 1995.
I'm here to tell you that I, on behalf of the Christian Science community, am generally pleased with Bill 19. But I have one serious concern that causes me to recommend a religious accommodation amendment to the bill. First, though, let me tell you a little bit about the Christian Science church. It was founded by Mary Baker Eddy in 1879 in Boston. It has, worldwide, some 2,000 what are termed branch churches, of which there are 28 in Ontario. Many people in public life are familiar with the Christian Science Monitor, the international daily newspaper published by our church. The Monitor's hallmarks are integrity, objectivity and global perspective. It has won five Pulitzer prizes.
The Christian Science Church was founded to "reinstate primitive Christianity and its lost element of healing." Christian Scientists rely exclusively on a reasoned understanding of God for healing. Specifically, they rely on what they call spiritual treatment. This treatment flows directly and inevitably from their worship of God.
We want to share two examples of this spiritual treatment to illustrate that Christian Scientists have the deep conviction that this form of treatment is treatment. Our chosen religion obliges us, when we are sick, to treat ourselves through prayer or, if we do not readily heal ourselves, to request treatment of another Christian Scientist. Please note that these are religious experiences with an element of physical healing, not clinical accounts. If you'd like to go ahead then, Gwen.
Ms Gwen Sampson: In the late 1950s, after having a miscarriage, I was told by the gynaecologist attending me and his partner, who also gave me a thorough examination, that I had a fibroid tumour and should have an operation. This doctor knew that I was a student of Christian Science and was sympathetic towards my religion.
During this period I was receiving spiritual treatment from a Christian Science practitioner and I reported to him the doctor's findings. Because I had been interested in Christian Science for about seven years and I had experienced the efficacy of this healing truth, I decided to continue, with the help of the practitioner, to work out this problem through prayer.
At about this time we had purchased a piece of land and had started to build a new home. This was when I started to question what was truly going on in my experience. It came to me that it was the unfoldment of right ideas within consciousness and not a lot of material things being added. The Bible says, "In him we live and move and have our being." Knowing home to be a divine idea, I knew that it included the warmth of love, the beauty of soul, the colour and harmony of life and the intelligence of mind -- love, soul, life and mind being synonyms of God in Christian Science. I affirmed and cherished these ideas, knowing that this was what was truly going on -- not an accretion of good, but an unfoldment of God's ever-present goodness.
Some time later, feeling quite free, I ceased to have treatment from the practitioner. Two years later I was examined by the same gynaecologist, who told me there was no sign of a tumour and rejoiced with me that it had been healed through prayer and Christian Science.
"Our first two children were born quickly and painlessly, and there were periods of spiritual growth and happiness. When we were expecting our third child, we prayed to know that God's creation is complete and that God, not man, is the one creator. We felt great love for the child.
"In order to comply with the law relating to childbirth, I visited a doctor. After an examination the doctor explained that the baby, and perhaps I myself, probably would not survive a natural delivery, because the placenta had attached in the wrong place and was completely blocking the baby's exit. He called the difficulty full placenta previa. I was told the birth would have to be by Caesarean section.
"As I drove home I prayed and thought of instances described in the Bible when obstacles had been removed. For example: The times when the stone was moved from in front of Jesus's tomb, when Peter was freed from his prison chains and when the earthquake freed Paul from prison. I also remembered the following verse from Isaiah (66:9): `"Shall I bring to the birth, and not cause to bring forth?" saith the Lord. "Shall I cause to bring forth, and shut the womb?" saith thy God.'
"I was taking care of two extra children that night for a friend. After I'd put them all to bed and was cleaning up, I found myself singing the following lines from hymn 148 in the Christian Science Hymnal, `Green pastures are before me,/Which yet I have not seen.'
"I spent the rest of the evening in prayer. The next morning I called a Christian Science practitioner and told him the situation. Many helpful ideas were shared in the conversation, and I gained a better sense that the material evidence was a lie, not the truth, about God's child, and that God's law is always at work, maintaining man's spiritual perfection. I saw that I must know only what God knows and hold to that perfect idea. At this point I felt completely at peace.
Our specific concern with Bill 19 is clauses (b) through (h) under the exclusion of treatment in the Health Care Consent Act. We consider these provisions to be directly adverse to Christian Science treatment and thus to our freedom of religious beliefs and practices, as recognized by section 2(a) of the Charter of Rights and Freedoms.
Let me talk about the clauses that we find most invasive; first, "(b) the assessment or examination of a person to determine the general nature of the person's condition." Science and Health with Key to the Scriptures by Mary Baker Eddy -- and I've placed several copies of the book around so that you're welcome to have a look at the book or to even follow these passages that I'm quoting -- is the definitive and complete statement of Christian Science and Christian Science treatment. Here is a quote from page 421, "If you would destroy the sense of disease, you should not build it up by wishing to see the forms it assumes." Do you see that this is the precise opposite of clause (b)? Clause (b) says that the health practitioner examines the person to find out if there is disease and then perhaps assesses it. The statement from Science and Health says that going looking for disease is not the way to cure disease. Rather, one of the major themes of this book is that by searching for wholeness and wellness we find these instead.
Let's consider clause (d), "the communication of an assessment or diagnosis." Again, quoting from Science and Health, page 370: "A physician diagnosis of disease...tends to induce disease." Thus, a Christian Scientist would view this clause as both adverse to his religious beliefs and to his health.
Let's go to (g), "a treatment that in the circumstances poses little or no risk of harm to the person." Science and Health says this on page 167: "The scientific government of the body must be attained through the divine mind." "Divine mind" means God in this context. "It is impossible to gain control over the body in any other way. On this fundamental point, timid conservatism is absolutely inadmissible. Only through radical reliance on truth can scientific healing power be realized." Again, truth is a synonym for God in our religion.
This passage brings out that Christian Science treatment cannot be mixed with other forms of treatment. Another treatment, whether or not it was thought to pose risk, would infringe this religious teaching. As you might imagine, Christian Scientists would be strongly opposed to "(h) anything prescribed by the regulations as not constituting treatment," for obvious reasons.
Let me summarize. Christian Scientists have practised what they term "spiritual treatment" for almost 120 years. That treatment is integral to their worship of God. Exclusions (b) to (h) under the definition of treatment are adverse to that spiritual treatment and so adverse to our religious beliefs and practices. Thus we think that we have strong grounds to recommend that a religious accommodation be included in this bill.
We recommend the inclusion of the following religious accommodation amendment as section 7 under the general section at the start of the act: "Notwithstanding the exclusions listed in paragraphs (b) to (h) of the definition of treatment, a health practitioner who has reasonable grounds to believe that a person wishes to rely exclusively on treatment by prayer and spiritual means as an enjoyment or an exercise of a religious freedom, shall not, without the explicit consent of the person or the person's substitute decision-maker, take any of the actions specified in paragraphs (b) to (h) of the definition of treatment." We propose the marginal note, "Enjoyment or exercise of a religious freedom." This phrase is used in the Drugless Practitioners Act, 1990. If that marginal note is too long, simply "Exercise of a religious freedom" would be just fine.
Concerns about legislative incursions on the right to Christian Science treatment are not new. There is a protective reference to spiritual treatment in the Drugless Practitioners Act, 1990. That reference has been there since the passing of the Drugless Practitioners Act, 1925. In addition, the Regulated Health Professions Act, 1991, includes a religious accommodation provision, as did its predecessor act, the Health Disciplines Act, 1974. The words "Christian Science" are actually used in An Act respecting the Regulation of Nursing, 1991.
There are three other reasons for adopting this religious accommodation amendment. First, as we heard Tuesday from the College of Physicians and Surgeons of Ontario, health care practitioners should have maximum clarity in this legislation. Why should they risk their livelihood to leaving themselves vulnerable to liability?
Second, it could be argued that individuals not wishing to be subject to paragraphs (b) to (h) are already protected by common law. This may well be, but are a person's religious beliefs and practices really protected if that person has to potentially spend $100,000 to go to court to get those rights recognized? Why not include this amendment and make health care practitioners and those wishing to rely on spiritual treatment both happy?
Lastly, the court system in Ontario is overburdened. Why not make the taxpayers of Ontario happy by making this point of the act as lucid as possible and thus saving them additional costs to the system by preventing needless litigation?
Mrs Marion Boyd (London Centre): I was interested in the examples you gave of the inclusion of other such references. I'm curious about whether you came to committee and made presentations on that at the time or whether that was automatically included in those acts, because I can't recall, in the ones that we passed during our time in office.
Mr Young: I just came to office myself in June, so I'm not perfectly aware of what's been done before. I do know that Christian Science Committees on Publication like myself have been making representations to the Ontario Ministry of Health ever since at least 1925. We feel that's very important. We publish and distribute among members of our church this fairly big book entitled Legal Rights and Obligations of Christian Scientists in Ontario. So our freedom to practise the religion that we feel called to practise is very important to us, so much so that we're willing to devote quite a number of resources into making presentations like this one.
Mrs Boyd: You've made the point that you believe this answers the request that physicians have made, that the act be as clear and as protective of them in terms of liability as possible, and you believe the suggestion you've made about an amendment would accomplish that. Have you had any discussions with the OMA or the college?
Mr Young: But with all due respect, just looking at that again very quickly now, it seems to me those relate to treatment. But we're not talking about what the bill qualifies as treatment; we're talking about the things that are excluded from that category.
Mr Young: Right. To summarize my arguments again, Christian Scientists feel that they practise spiritual treatment, and that's integral to their religion. The things that I went through there, the things that are excluded from the definition of "treatment," are very invasive to that practice. We wish a religious accommodation not to have those acts that are considered non-treatment performed on us, should we find ourselves in a hospital.
Mr John L. Parker (York East): Thank you very much, Mr Young, for your presentation this morning. I'd like to ask a question that actually doesn't arise directly from your remarks this morning, but I wonder if you could help us out with it.
Mr Parker: We've received a lot of expressions of concern over the current regime for proving a power of attorney, the process of validating a power of attorney before it can be used. I know that you have written on that subject. Can you help us out with your thoughts on that?
Mr Young: The way the new act has come in, I think it's perfectly fine in that regard. I certainly don't have any qualms about it. The fact that you can choose your method of assessment, I feel quite happy about that. I think that's good, because from the standpoint of a Christian Scientist, a Christian Scientist could choose another Christian Scientist. You see, sadly, occasionally Christian Scientists are interpreted as not being mentally capable, because again, they believe in radical reliance on God. Occasionally, I'm sorry to say, health professionals sometimes don't equate that with sanity. So there really is a great need for there to be strong protection in the legislation, we feel.
Mr Parker: I understand that, but on the question I'm asking about validating a power of attorney, where in the present bill we have removed the elaborate provisions for validating a power of attorney, I understand from your remarks that you're comfortable with the amendments we've made there.
Frankly, I agree with Mrs Johns. I think that section does provide some assurance to you. However, there are some other things in place that I think you should be aware of and I hope you are: the fact that competent adults have a right to refuse treatment. In other words, a professional cannot do anything to you without your consent.
Mrs Caplan: Things that are excluded. Under the Regulated Health Professions Act there are harmful acts which are listed, and anything that is outside of that, practitioners, whether they be religious practitioners or anyone, are free to offer.
Those which are harmful are listed under that legislation. We've used words like "treatment" and we've had debates about what is treatment and what is not, but what we're talking about now are the things that pose a risk of harm. I think the only one in that list that you probably would have some difficulty with would be the --
Mr Young: Yes. With all due respect again, some of these, and it perhaps is not too strong a word, are positively inimical to our practice of our religion. We're not concerned so much about what you to do us physically -- of course, we're concerned about that -- but we're concerned too as Christian Scientists about what happens mentally, because what happens mentally is at the root of our religion.
Mr Young: For example, the item where it says "the communication of an assessment or diagnosis" -- for a Christian Scientist to have a detailed explanation of sickness, that's completely anathema. That's extremely invasive.
Mr Young: Imagine this scenario, where a Christian Scientist is taken in an ambulance to a hospital. He is non-ambulatory, perhaps he can't speak, but there's no particular emergency and the doctor says, "Well, we've taken some X-rays and here's what the problem is."
Mrs Caplan: If the person is unable to speak or is in any way judged incompetent and has written a power of attorney and designated someone of a like faith to act on his behalf, then that communication wouldn't take place with him at all. It would be with someone on his behalf. If he were competent and that's -- I'm having trouble understanding what your expectation would be.
Mr Young: No. We have no qualms about the emergency things. They seem to us reasonable. What we have qualms about are the things that come under the definition of not being treatment. We have very special needs, we think, and we have had those for 100 years. Allow us to be excluded from that. Christian Scientists aren't interested in receiving a diagnosis.
Mrs Caplan: My view is that those protections are here for you, because in a non-emergency situation you can choose not to have contact with the practitioner. You can say: "I don't want you to treat me. I don't want you to talk to me. I'm going to find somebody else." If you are unable to speak, you can have a power of attorney who will say, "This is the person I have the power of attorney for, and he is not interested even in -- "
Mr Young: Are you of the view that health care practitioners in general are so sensitive that they will not give an assessment or a diagnosis? I'm not of the view that they will think that's a problem with anybody. If it's written in the legislation, they will say, "Ah, this is a special case"; otherwise they won't imagine it's a problem at all, whereas for us it is a deep problem. It is an invasion, and it's an invasion of our rights to practise the religion that we want to practise.
Mrs Caplan: I think that what's been attempted over the years is to put in place safeguards so that you could opt out of having treatment imposed upon you or even having communication with a practitioner if you choose not to. There are many who choose alternative forms of therapies and that is their right. No one says to them, "You can't do that," unless someone is offering something which runs contrary to the legislation on the things that are harmful, in which case those are licensed to certain professionals. So I am having some difficulty understanding, in a non-emergency situation, why you wouldn't just say: "I'm out of here. Thanks very much. I'm not interested in what you're offering."
Mr Young: It's that in our view the health care practitioners, well-meaning though they are, may not be sensitive to the fact of how inimical to our practice is a description of disease. They may just, without even knowing it, say, "You've got this," whereas a Christian Scientist would say: "Thanks a lot. I didn't want to know that."
Mrs Caplan: The position I take is that you can just say: "I don't consent to having you as a practitioner," period. "I don't want to have anything to do with you. I'm out of here." If you've fallen and sprained your ankle and they come and you don't want them, you can say, "I do not consent," period. Once you do that, whether they're sensitive or not, they have no right to any further treatment, communication or anything else if you do not consent to that, and then you can complain to the college.
Mrs Caplan: It will take just about a minute and a half while the others are coming forward. These are not my words, these are the words of Etta Ginsberg-McEwan, who addressed the committee yesterday. She said:
"I did not have the time to make two important points. The first point is the one that was raised by several members of the committee on Monday with the public guardian and trustee agency regarding conflict of interest. While most families are loving and caring, I can tell you from my many years of experience as a social worker that there are those adult children who `wish to get their hands on their parents' moneys.' There is physical, financial and emotional abuse.
"The second point I want to make is that Mr Wilson should not be so quick to appease the doctors because he has taken them on in other areas. You need to know that doctors `not all' are not our advocates. Older people are being thrown out of hospitals prematurely and being forced into low-standard nursing homes. Older people are threatened day after day in our hospital system. Their situation could be improved with an advocacy organization."
Ms Lois Neely: Ladies and gentlemen, I'm Lois Neely, the chair of the Toronto Mayor's Committee on Aging. My background in the field is that I was for 20 years administrator of a long-term-care facility in the province of Ontario. I was born in Toronto, I've lived here all my life and I live in downtown Toronto now.
I'm glad to have with me our coordinator from the Toronto mayor's committee, Margaret Bryce; also our counsel, Judith Wahl, Advocacy Centre for the Elderly. The presentation to the standing committee is as follows.
The Toronto Mayor's Committee on Aging is grateful for the opportunity to appear before your committee to talk about the needs and rights of elderly people, but we regret that we have come here so often. We came here in 1992 to offer suggestions and to support the Advocacy Act, the Substitute Decisions Act and the Consent to Treatment Act, the acts which are now being amended or repealed.
These three acts recognize that competent people have the right to make decisions about their lives. We support that. These acts give competent people a mechanism for turning over the decision-making power to another competent person of their choice. We support that. These acts also set out a process for taking away the right to make decisions. The current legislation provides a number of safeguards. We support that too.
The Toronto Mayor's Committee on Aging knows that family and friends are an important resource to elderly people. They provide more than 90% of the loving care that people need as we get older. But the Toronto Mayor's Committee on Aging also knows that relationships can break down over time and that sometimes family members are not physically and emotionally capable of looking after their older relatives, and sometimes people abuse the love and trust which they shared many years before.
The Toronto Mayor's Committee on Aging has been a leader in Ontario in talking about the scandal of elder abuse. We are proud that we started campaigning in 1984 and we're proud that we have continued to provide resources to raise awareness of this issue. We have a video which is available in English and French, a T-shirt, pamphlets in five languages; we're now producing a bookmark which will be available in English and 12 other languages. You will notice that our slogan on your bookmark which you have is "Home is where the hurt is." That's a very painful message.
We would all prefer to believe -- I'm sorry; I'm a senior myself -- that all families love and care for each other and that they will always act in the best interests of their frail family members. I can tell you from my 20 years' experience that this is often abused. Most of the time children are wonderfully caring, but I could tell you specific instances which say that children can be consumed by greed and not act in the best interests of the senior.
We're here today to offer suggestions, but very little in the way of support, for the changes which are being proposed in this bill. We're concerned that the government, through this Bill 19, is proposing to withdraw some important safeguards and thereby potentially put frail, elderly people and people with disabilities at risk. We would like to know why you're in such a hurry to change the legislation and why you're in such a hurry to take away the rights of elderly people and people with disabilities to make decisions about their own lives.
Bill 19 repeals the Advocacy Act. The government believes that the Advocacy Commission is too expensive and that its powers are too wide. We protest. The Toronto Mayor's Committee on Aging believes that people who are vulnerable to abuse may need help to make their own decisions. They require information on their rights and on the options which are available to them, and they require people who can help them to deal with the issues in culturally appropriate ways.
The Toronto Mayor's Committee on Aging recommends that money be allocated for a program to provide grants to legal clinics and community organizations and to establish an office to provide training and information to those community organizations.
We also recognize the important role that the Ontario Advisory Council on Senior Citizens and its companion council on people with disabilities played in advising the government on issues affecting seniors and people with disabilities. We regret that these valuable advocacy organizations were terminated.
We find the recommendation from the Advocacy Commission that a non-profit corporation be established to administer advocacy activities worthy of support. We believe that senior citizens should be included on the board of directors and that the board should not be restricted to people with disabilities.
As to the Substitute Decisions Act, although that act was passed unanimously by the Legislature, it has been the target of attacks by the press, community groups and the Conservative Party. Unfortunately, most of these attacks were based on misinformation. The legislation had been in force for just 10 months. It's unfortunate that extensive changes are being made at this time.
The Substitute Decisions Act sets out the rules for giving and using powers of attorney. It also sets out the rules for taking away a person's right to make decisions. Because this act deals with questions of personal liberty, it sets out a number of safeguards for these processes. Many of the safeguards are removed in the proposed legislation. We note the following problems with this part of the bill.
(1) The current legislation prohibits paid caregivers from the role of attorney for personal care. The new legislation not only permits paid caregivers to apply to the court to be a guardian for personal care, but also gives the paid caregivers priority over the public guardian and trustee. We believe that this bill permits a dangerous conflict of interest. This amendment does not protect the interests of the frail elderly and other vulnerable people.
(3) The witnesses to the power of attorney will be exempt from the current requirement to sign a declaration that they have no reason to believe that the person assigning the power of attorney is incapable. We believe that this important safeguard should be retained.
(4) Although existing powers of attorney will continue to be valid, they will be valid under the terms of the new act, not under the old. Certain premises and protections of the old act will be withdrawn. We do not believe that this provision is in the interests of elderly people who have already completed valid powers of attorney in good faith.
(5) The bill removes the requirement that a power of attorney for personal care which was given with conditions be validated before it is used. It also removes the requirement to inform the person involved that you are starting to make decisions on their behalf. We believe that this is an intolerable abrogation of our rights and liberty.
(6) The bill does not introduce any new ways to protect the property of vulnerable people. When people are assessed as incapable of making decisions on medical treatment, there is no onus on the doctor to report this situation. There is no easy way to have a person assessed for incapacity.
The current regulations provide that a person requesting an assessment for incapacity to manage property pay an independent assessor to undertaken an assessment. We are advised that the average cost of an assessment is $750. Individuals who are worried about their friends or tenants and physicians and social workers who are concerned about their patients and clients cannot afford that kind of fee. We need something better to deal with this.
This bill repeals the Consent to Treatment Act and replaces it with the Health Care Consent Act. We believe that the bill gives unnecessary power to the medical profession and makes it easier for families to intervene prematurely in the lives of the frail elderly and other vulnerable people.
(1) The bill removes the most basic guarantee in the present act, that a patient be informed that their right to make a decision is being taken away from them. We believe that doctors owe it to their patients to inform them of a finding of incapacity; it's unethical not to do so. We believe that this provision is a gross infringement on the rights of the frail elderly and other vulnerable people.
(2) We are concerned that the legislation will permit members of six listed health professions to evaluate an elderly person's capacity to consent to admission to a long-term-care facility. This is a very important decision in a senior's life. We do not believe that it should be removed by the signature of a speech therapist, a physiotherapist, occupational therapist, nurse, or even on the signature of a doctor or psychologist, unless they are directly involved in providing the care requiring residence in a care facility. Dermatologists, surgeons and ophthalmologists may provide excellent care, but they are not qualified to assess the capacity of elderly people to make decisions about where they live unless they have been involved in providing the care.
(3) We also recommend that people who assess capacity be trained in university and by their hospitals and professional colleges for this role and that appropriate standards be established for these assessments.
(4) We are concerned that this bill allows a health care facility which has obtained consent to treat an elderly person to move that person to another facility and to provide that treatment there. We believe that this section will be used to move an elderly person to a long-term-care facility without their consent, even though such consent is guaranteed in the Long Term Care Statute Law Amendment Act.
(5) We are concerned that the bill proposes to allow substitute decision-makers to consent to the use of electric shock therapy. The Toronto Mayor's Committee on Aging is opposed to the use of ECT as a restraint for elderly people. Almost 40% of the electric shock therapy provided to residents of Ontario in 1993-94 was given to people over the age of 65, although seniors constitute less than 12% of the population -- 40%. We believe that this abuse of the elderly must be curbed. Electric shock therapy should require the consent of a court.
Ladies and gentlemen, the press release accompanying the tabling of this legislation says that it will "give more power to families in the care and protection of their mentally incapable relatives." The Toronto Mayor's Committee on Aging believes that families do not need more power, frail people do. We ask you to reconsider this legislation and allow more opportunity for consultation.
Mr Tony Clement (Brampton South): Thank you very much for your presentation. You've obviously put a lot of thought into it, and it's important that we all, as a committee, understand where you're coming from, so I thank you for taking the time to appear before us.
As the parliamentary assistant to the Minister of Citizenship, Culture and Recreation, I want to focus my questions on the repeal of the Advocacy Act, which you've referenced on page 2 of your brief. As a preamble, though, could I just talk about the winding down of the advisory councils you mentioned?
I guess we're of the view -- I want your comment on this to see whether from your perspective we're on the wrong track in thinking this way -- that when these councils were created 20 or 25 years ago, there was not a lot of advocacy going on for seniors or persons with disabilities. Fortunately for our society, that has changed. There are a lot of vocal, well-organized and articulate advocacy groups in place, many of which we've already heard from in this committee process, and so we felt we were replicating what was out already there and in fact what we were partially funding in the advocacy world. From your perspective, are we still on the wrong track by thinking that?
Ms Neely: Yes. I was a member of the advisory committee on seniors years ago when I was in the field. I felt then we served a very valuable use. I feel they still would, because they're central. We're all over the province and we don't have a good enough alliance, whereas we felt when they were in place, we could go to them and we felt maybe they had a direct pipeline to you people. They were a little more in touch and could keep us on course a little better. I think you could establish a seniors' advisory council. It might not have to cost as much as it did in the early days. I know we had a lot of people on the committee and we probably spent a lot of money in those days. It doesn't have to be the style we were in the freewheeling 1960s and 1970s, but I do believe it would serve you very well.
Mr Clement: I thank you for your input on that. Could I turn then to the Advocacy Act, because it was a position of our party, as you recognize, before the election and during the election that we were going to wind down the Ontario Advocacy Commission -- I guess I can put it that way -- and repeal the act. We're kind of committed to that, but we are very much interested in making sure that in our society advocacy is done in a way that is equitable and just. I'm looking for your input. Is there a way that we as a government can assist in the education of advocates in ensuring there are high-quality advocates in the volunteer community and among our friends and family? Is that something you'd like to see us consider?
Mr Clement: Does it have to be that way, though, or can it be through another program that may accomplish the same goals? I'm trying to focus in on the end result rather than the means of getting there, I guess.
Ms Neely: Right. No, I think we agreed that was a good idea and we say to make sure senior citizens are there. I don't think you're making enough use of the good, retired senior citizens who could be $1-a-year men and serve you very well --
Ms Neely: -- especially when more and more are getting put out to pasture earlier. It gives them a little status, a little position, you know, recognition. Put them to work for you. They could serve you very well without a lot of bucks.
Mr David Tilson (Dufferin-Peel): Obviously you are at odds at least with our party with respect to the Advocacy Commission, and I respect your position on that. This debate has been going on for a substantial period of time. It's gone through two sets of hearings. Individual MPPs from all parties have held town hall meetings or forums in their own ridings to debate this. There have been discussions in our own individual offices. Particularly for those who are re-elected to the Legislature, it's been an ongoing debate with respect to the Advocacy Commission for some time.
My personal experience is that I have a mother who is in a nursing home in Orangeville and I have a great deal of respect for the nurses and the health care providers in that institution. They provide absolutely wonderful advice to seniors, some of whom are incapacitated or on the verge of incapacity, some of whom aren't. It's a combined nursing home with retirement home and it's an absolutely wonderful facility. The advice they give to seniors is outstanding and I challenge anyone who wishes to criticize the advice that comes to those situations.
There are many health care providers who have said to me and other politicians of all three parties that they were concerned with the interference that would take place by the advocates who were going to come out of the Advocacy Commission, to interfere with advice that is already going to be given. They were concerned when seniors, because that's what we're talking about here, who were competent signed powers of attorney authorizing members of their family, whether it be children or others, to look after them when they were incapacitated, whether that be permanent or temporary -- concerned at the interference of the advocates that would take place as a result of the former legislation, the legislation that exists now. They were very concerned with that interference.
There is no question that there is abuse of people in our society, and I guess that's one of the questions we all have a concern with, whatever our political faith is, as to how we're going to deal with that abuse, whether it be against women, against children, against seniors, and that whole array of issues.
Mrs Caplan: Thank you for an excellent presentation. Were you consulted by the government? You're an advisory committee, I know, to city hall, and I'm wondering whether you were involved in any of the consultations the government had prior to the tabling of this legislation for first reading.
Mrs Caplan: I've asked that question of a number of people. I've forgotten, actually, due to lack of time, to ask a number of others. Judith is here, if I could direct a question; it relates to consultation. You mentioned that you're involved with the interim advisory committee and we heard from Ms Bregman on February 6 in the morning about participation in what was I understood part of the consultation, a meeting that took place on January 23. It's come to my attention that in fact that was an information meeting on the implementation of the legislation. Was that a consultation meeting as far as people having the opportunity to offer suggestions for changes to the bill was concerned?
Ms Wahl: That wasn't a consultation meeting. The committee was meeting to provide advice to the office of the public guardian and trustee on the implementation of Bill 19 as it stands, on the assumption they would have to move quickly and be prepared to make changes in the way things are operating. It was intended to provide some advice.
Mrs Caplan: One concern you raise that I've been raising day after day has to do with the right of people to be told when they're found incapable and that decisions are going to be made on their behalf by someone else. You put it extremely well, but you also raise the issue of electroshock therapy. The position I have taken, and I'd ask for your comment on it: The previous government brought in an absolute ban and we've heard some really heartbreaking stories, particularly about one young man; for him it was a last resort and everyone agreed it was an appropriate therapy. Relating to these statistics around electric shock, are you referring to faradic stimulation or psychiatric electroshock therapy?
Ms Neely: No, we're referring to electric shock therapy, period, which is being used to control behaviour. We object to anything being used to control the behaviour of the elderly, whether it's medication or whether it's shock treatment.
Mrs Caplan: That's faradic. Could you explain the difference? I must admit, I think there are people, including myself, who would like to know which therapy you're referring to. I haven't heard about this. Is this for mental illness?
Ms Wahl: My understanding of what the Toronto Mayor's Committee on Aging is expressing is that it's all electric shock therapy. They're not talking about just the faradic stimulation. I understand faradic stimulation is for the purpose of behaviour modification.
Ms Neely: The statistics speak: 40% of it gets done to people who are not terribly defensive about these things. As to the advocacy, may I just say back to that, that we made the point that so long as somehow this -- you are, I believe, in government as elected representatives, and so long as you provide some legal aid for seniors who are desperately in need of help, which is our first recommendation under the Advocacy Act.
Mr Rosario Marchese (Fort York): Thank you for the presentation. I think your experience -- not just yours but people like you have a long history in the field, and you've said you're now senior, and you've seen and witnessed a number of abuses that can happen to people and you've outlined a series of problems and suggestions. I think it's important for the government members to listen to people like you because when you talk to us about your experiences, it's important for us to listen to them and understand what you're saying.
On the whole issue of the Advocacy Act, they've been arguing that the Advocacy Act and the commission are too intrusive. A number of people have said that these advocates and these rights advisers operate under the provisions of the advocacy service, which is to help individual vulnerable persons to express and act on their wishes. That's hardly intrusive. When people are there to represent vulnerable people to express and act on their wishes, that's not an intrusion, obviously; also, to help vulnerable persons to bring about systemic changes at the governmental, legal, social, economic, institutional level.
The point of that is that what we're trying to get at is systemic problems across the board. Volunteers can't get to systemic problems. Little organizations that have very few paid staff can't get to these systemic problems.
Mr Clement is very happy when you talk about using volunteers and seniors as a richness of capital and all that, because that's what they want to get to, but I don't believe that's adequate, to rely on volunteers and to rely on poorly paid services where they don't have full-time staff to get to some of the abuses that have happened to people with disabilities and seniors. Do you agree with that?
Ms Neely: Yes, I believe this is so. I think we made our point. First, our wish is that the government weren't moving quite so quickly, that we'd give it a little bit longer than 10 months. Certainly everything can be abused, but it just seems to be a little bit of a hurry. Yes, I don't think the government's suggesting that volunteers can do it all. There has to be a little funding here.
I wish all the homes were as good as the one Mr Tilson has mentioned. There are still homes, I'm afraid, in the province that people wouldn't put their dogs in. That's been the case and I'm afraid it's going to go on that way. We do need some training to help the frail elderly and the frail disabled. We need trained helpers to do this. This is what we're asking for.
Mr Marchese: I have a quick point. I'd like to ask Mr Tilson this question, as the parliamentary assistant, because a number of people have made this comment around paid caregivers as guardians, and they've highlighted this as a particular problem. This particular bill gives priority to caregivers over the public guardian and trustee as a court-appointed guardian.
Mr Marchese: We have no rights advisers who would give guidance and identify possible abuses; there are no requirements to produce financial reports either, which further complicates possible abuses; and the elimination of restrictions on the use of restraints -- all of these things are now in this bill. Given what a number of people are saying, have you thought about either the elimination of that or a change in that?
The Chair: And that's not fair. If you wish, after they have finished their presentation, we can discuss it as a committee whether or not we're going to permit questions, but first of all let's deal with these good people who have taken the time to come here today, if we may.
Mrs Boyd: First of all, I want to thank you very much for the very clear way in which you put your concerns. I share all the concerns that you've given and I can assure that we'll be advocating very strongly on this committee for some of the changes that you've suggested. I guess it's very important for groups like yours to come forward and talk about the reality of abuse as it occurs, because we seem to be caught in this mythology that all families and all caregivers are always acting in the best interests. We know that's not true and it's important to hear the experience from people like you.
Mr Marchese: If I can, Mr Chair, since the other group is not yet here, in the past often the opposition members, meaning your colleagues, would ask the parliamentary assistant questions -- often -- and often we used to answer them. We used to answer the question that was asked, not other questions, as Mr Guzzo was saying. I didn't ask several other points. You'd reflected on paid caregivers as guardians as an answer, and that was all I was asking. I didn't want long answers or long debates, and it was part of what the deputations have raised. So it's a practice that we have practised in the past.
The Chair: Mr Marchese, I haven't ruled on that. I just don't think it's appropriate to take the time of people making submissions for that purpose. At the end of the day, please raise it and we'll discuss it as a committee. We will be here at 5 o'clock today, I'm sure.
Ms Mary Ellen Douglas: Campaign Life Coalition Ontario works at all levels of government to assist legislators in public policy matters that affect society's protection of human life from conception to natural death. We are a grass-roots organization representing thousands of families across the province. We are solely financed by the generosity of our supporters and receive no government or institutional funding.
Thank you very much for this opportunity to address this committee today with our concerns over Bill 19. My name is Mary Ellen Douglas. I am president of Campaign Life Coalition Ontario, as well as national coordinator for Campaign Life Coalition Canada. I am joined by Sabina McLuhan, who is a policy consultant for Campaign Life Coalition.
We support the stated objectives of the government in drafting Bill 19, the Health Care Consent Act. In our view, the legislation enacted in 1992 by the previous government was a classic example of a "nanny state" ideology which led to unwarranted delays for patients seeking treatment and usurped the rights and responsibilities of families to care for their relatives. We welcome this government's understanding that it is a primary right of the family and its responsibility to care for the members when the individual is unable to make medical decisions for himself or herself.
(2) The problems that can arise with the practical interpretation of advance directives, or power of attorney for personal care documents, which could lead to medical treatment being withdrawn or withheld against a patient's current wishes.
(4) The professional qualifications of those appointed to the Consent and Capacity Board, and the provisions that crucial decisions can be made by a sole member of the board when a vulnerable person has no family or person designated to make decisions on his or her behalf.
(1) The age of consent: The HCCA makes no reference anywhere in the draft document to a minimum age for informed consent to medical treatment. It leaves the determination of mental capacity solely in the hands of a health practitioner. This is a curious omission and quite at odds with part I, clause 1(e), which states the purpose of the act to be "to ensure a significant role for supportive family members when a person lacks the capacity to make a decision about a treatment, admission to a care facility or a personal assistance plan."
Parents' rights to direct and control the medical treatment of their minor children are protected under sections 2 and 7 of the Charter of Rights and Freedoms. The right was affirmed by the Supreme Court of Canada in January 1995 in its judgement in B. v Children's Aid Society of Metropolitan Toronto. The court held that state intervention that overrides parental decisions on behalf of their minor children is only constitutionally valid if, before the treatment is administered, the state provides an appropriate mechanism for the parents to bring their concerns about a proposed treatment before an impartial body.
The HCCA offers absolutely no protection to parents, or children, from inappropriate actions on the part of a health practitioner. For example, under the HCCA a child could obtain a prescription for contraceptives, an abortion procedure, counselling on sexuality, treatment for a sexually transmitted disease and so on without parental permission or even notification, and solely upon a health practitioner's assessment as to the child's capacity for informed consent.
The situations just described occur all too often in Ontario today. How can a health practitioner -- who may be a drop-in clinic physician, a nurse, a psychologist -- properly assess the capacity for truly informed consent in a young person whom he or she may never have met before and whose family background is unknown?
Not only is the omission of any protection of parental responsibilities at odds with the intent of the HCCA; it is completely at odds with parental obligations as set out in the provincial Family Law Act. The Family Law Act holds parents financially and morally responsible for the nurture and support of their minor children. This obligation is only terminated when the child reaches 18, or at 16 if the child marries or withdraws from parental care and support.
There are, of course, vulnerable young people without supportive families. But the Child and Family Services Act of Ontario exists to act in such situations. The HCCA indicates the explicit presumption that the individual has the capacity to provide informed consent, unless there are reasonable grounds to believe incapacity. The HCCA should also include the explicit presumption that parents have the capacity to direct the medical treatment of their minor children, unless the parents demonstrate their incapacity in this regard.
(2) Advance directives: In 1992, when the Substitute Decisions Act came into force, many Ontarians rushed to sign advance directives and powers of attorney for personal care for fear that the government would step in should they become incapacitated.
We welcome the government's move to simplify the procedure for validating powers of attorney for personal care and we agree that family members should have the primary right to make medical treatment decisions for relatives incapable of forming their own decisions. But we are concerned that certain underlying assumptions and problems with advance directives have not been examined or addressed.
The current power of attorney for personal care form, issued by the office of the public guardian and trustee in accordance with the Substitute Decisions Act, is available to anyone who wishes to identify a substitute decision-maker for the future. It can be completed quite simply by just naming an attorney, or it can include specific instructions, conditions and restrictions to guide the person appointed.
Many people have great difficulty in clarifying their thinking when they confront the prospect of disability or illness. Some will identify a spouse or close relative, sign the form and leave it at that. Others will say that they do not want heroic treatment or that they do not wish to be kept alive on machines or that they do not want treatment if there is no cure for an underlying disease. Some will not want to discuss the future at all and will place their trust in their appointed attorneys to "do the right thing." Some of us in perfect health today will react casually to a news story of a particularly heart-breaking case by saying, "I would not want to live like that."
Each of these vague statements may well be the only discussion the attorney has to go on. It is all too easy to interpret "I do not want to be kept alive on machines" as a decision to terminate treatment when in fact the machine may only be a temporary measure to assist in healing. "Heroic" treatment may well be invasive surgery but may also carry a high probability of recovery. And those of us healthy today may not realize that it is perfectly possible to live a full and satisfying life with the kind of mental and physical challenges we hope we would never have to experience.
Many people change their minds over the years as they become more familiar with various illnesses and observe others' ability to adapt. Technology will continue to advance and improve treatments. How many will think to check back on their signed advance directives or talk to their appointed attorneys to ensure that their wishes will be respected? We fear that undue emphasis on advance directives and powers of attorney for personal care documents may lead to a misplaced feeling of security and cases of misinterpretation of an individual's latest known wishes.
(3) Personal assistance service: We welcome the HCCA's explicit definition of nutrition as a personal assistance service or a routine activity of living. However, we believe that an amendment to the act is required to ensure that nutrition and hydration can never be withdrawn by a substitute decision-maker. But part IV of the draft HCCA, sections 54 to 60, could be interpreted to allow such an action. In addition, care must be taken to ensure that the provision of nutrition and hydration is always defined as a service and never as medical treatment, as, for example, when food and water are provided intravenously or by a gastronomy tube.
It is important to note that there is only one legitimate circumstance under which nutrition may be withdrawn, and that is when death is truly imminent and the patient is no longer able to assimilate food.
Campaign Life Coalition is actively involved in monitoring proposed legislation which would legalize euthanasia in Ontario. Withholding or withdrawing nutrition and hydration from a terminally or chronically ill patient, or one who is comatose or in a persistent vegetative state, is euthanasia. A patient whose food and water is withdrawn does not die from underlying disease or condition; death results from starvation. This must never be permitted.
Public debate in Canada has not yet reached a level where there is consensus to legalize euthanasia, either at the federal or provincial level. In June 1995, the Senate of Canada concluded its lengthy public hearings on the issue and issued a series of recommendations for legislative initiatives. The Senate committee recommended that all forms of euthanasia remain a criminal offence, suggesting only that the Criminal Code could be amended to allow for less severe penalties for those convicted of performing or assisting a death by euthanasia. The federal government has not yet proposed any legislation in this area.
Medically vulnerable people will not be protected from death by euthanasia under the HCCA. It is not sufficient to assume that current medical ethical guidelines will safeguard patients in decisions regarding withholding or withdrawing treatment. As we discussed earlier, many substitute decision-makers will be relying on vaguely worded instructions in advance directives or on casual conversations that took place earlier and under different circumstances. There are health practitioners and many lay people who believe that severely disabled people are an economic drain on the system. There are distressing cases where people can live for many years in a type of twilight zone. These cases cause what one medical ethicist has termed the "worried well" to consider such patients as "better off dead." Good public policy protects the vulnerable from such prejudice and fear.
(4) Appointments to the Consent and Capacity Board: The draft legislation for Bill 19 places a great deal of power in the hands of the Consent and Capacity Board in cases where the individual requests a review of the finding of incapacity to reach informed consent for treatment. It also allows a health practitioner to apply to the board for review if he or she thinks that a substitute decision-maker who gave or refused consent did not follow the rules for substitute decisions.
Should the review confirm incapacity, members of the board have the power to appoint substitute decision-makers and to overrule decisions made on behalf of an incapable person, should they find an earlier decision inappropriate. The board may sit alone or in panels of three to five members to hear particular applications. In view of the power given to this board to make life-and-death decisions for vulnerable people, it is alarming that the draft of Bill 19 offers no regulation or guidelines for professional qualifications of board members. Appointments to the board are to be made by the Lieutenant Governor in Council. There is absolutely no assurance for the public that those appointed will have the skill and background needed to protect those most in need.
(5) No provision for family input in board hearings: Subsection 30(1) of the HCCA specifies, "A person who is the subject of a treatment may apply to the board for a review of a health practitioner's finding that he or she is incapable with respect to the treatment." The only persons entitled to notification of or attendance at such a hearing are the applicant, the health practitioner and any other person the board may specify.
Given that there is no minimum age for capacity specified in the act, it could well be that the applicant would be an adolescent who could, through this procedure, bypass parental notification and consent for medical treatment. It could also be the case that the applicant is a mentally confused adult wishing to bypass family involvement in his or her treatment.
At the very least, the legislation should provide for notice of an application to the board for family involvement so that board members are not passing a judgement in the absence of relevant information as to the person's background and support systems.
(2) Campaign Life Coalition Ontario believes that the public's ignorance of the hazards of advance directives and powers of attorney for personal care warrants immediate action. If such documents are to remain legally valid, we recommend that the government recognize the potential dangers inherent in advance directives and powers of attorney for personal care and take immediate steps to initiate a public education campaign to ensure that those preparing such documents safeguard their rights.
(4) Campaign Life Coalition Ontario recommends that the government clarify the qualifications required for appointees to the Consent and Capacity Board to reassure the public that those appointed will have the necessary professional qualifications and experience.
(5) Campaign Life Coalition Ontario recommends that the Health Care Consent Act be amended to give the family of minor children or mentally incapable adults a guarantee of notification of and participation in the hearings before the Consent and Capacity Board.
Mr David Ramsay (Timiskaming): Thank you, Ms Douglas, for your presentation. I'd like to limit my remarks to the area of age of consent. I noticed your first recommendation is that there be a minimum age for capacity to provide informed consent. I was wondering, do you have an age in mind?
Ms Sabina McLuhan: Yes. We'd very much like to see it become 18, in line with the Family Law Act, which also allows children between 16 and 18 who have either married or left their parents' care and control their own autonomy. But we like to keep things simple, and it seems to us that if parents are financially and morally responsible for the children up to age 18, then they should be involved in these kinds of decisions.
Mr Ramsay: I agree with you that it may be simple, but it may not be realistic. The job that I have as a legislator is to try to balance different belief systems that are out there in society with reality, to come up with law that tries to strike a balance. It really concerns me when you're saying a child could obtain a prescription, for instance, to treat sexually transmitted disease. I have two daughters who are now past their teen years, and I'll say unfortunately many of our teenagers are sexually active at I think too young an age, but that is the reality of society. This is a sensitive area within a family, for sure. I certainly would want to feel confident that if for some reason my daughter, who is sexually active, felt she couldn't come to her mother and father, and maybe she had a sexually transmitted disease, she would have the sense of confidence and freedom that she could seek treatment and not put her life in jeopardy. This would be a big concern for me as a parent. It's why I can't really agree with your recommendation.
Ms McLuhan: I understand what you're saying, but I think we have to presume that parents are the people who are primarily the most important people to care for their children, much more than any well-meaning doctor or social worker or whoever. I think we have to leave the presumption that parents care. If you have a situation such as you've described, then I think every care should be given between the doctor and the social worker to advise the child to talk to her parents. I think we have to start bringing back, especially in the minds of young people, that parents are not ogres. They may be disappointed in your behaviour, but very few of them abandon them totally.
While we allow these kinds of things to happen, that for this certain disease you don't have to notify, or that or this, you really put a wedge in there in the family unit. We recognize there are families that really don't care, sadly, about their children and we believe that the system does have a mechanism to help those children in the absence of the love and care of their families, but on the whole we believe the family unit should become first.
Mrs Boyd: I think we would all like to believe and like to presume that parents care for their children, but the reality that we see in terms of abuse of children, in terms of what happens to children in their families, doesn't carry that through. One out of four girls and one out of seven boys are sexually or physically abused before they're age 18, primarily by family members, and we cannot make the assumption that they are always going to act in the right interests. So the law tries to strike a balance to protect those who can't count on that kind of support, and those who can will come.
Those of us who have children who trust us know that indeed we get consulted all the time about what they need to do in terms of their health care. Those of us who are fortunate enough to have those families mustn't assume that that norm applies elsewhere. We have lots of statistical evidence to show that that's not the case.
I'm very interested in your recommendation around an education component, around explaining to people how important it is that if they're going to give advance direction, they understand what that means. I think that's very important too and I agree with the concerns that you've expressed about people rather casually giving instructions, not understanding what that means, not being precise enough about what that means.
I think that has been a concern all the way through with substitute decision-making. It's something that not just governments need to undertake. I think faith communities that have strong views around this need to be undertaking that as part of their responsibility to their congregants, and that those who are involved in certain health care advocacy groups, for example in the AIDS movement or the MS movement, any of those ones where we have a course of a disease and people know what outcomes might be, have a real obligation to help people to understand what they're doing and what it means when they make that directive. I would be very supportive of your recommendation on that and certainly think that's something we ought to do.
Nutrition and hydration are concerns of mine because I know that nutrition and hydration are withdrawn, and very often withdrawn without any explicit permission, and that really worries me. I wonder, though, if your recommendation that it never be withdrawn is very realistic. Can you imagine cases where it really ought to be looked at as a treatment? You talk about gastronomy tubes and so on. Can you imagine occasions when we would not want that kind of blanket prohibition on the withdrawal of nutrition and hydration?
Ms McLuhan: Not in the research I've done. The research I've done indicates that the only ethical withdrawal is at the imminent point of death, maybe within hours. We're not even talking days here, but hours, where the body's metabolism can no longer take the food and in fact it is painful. That is why we explicitly refer to that.
Other than that, food and nutrition are always what we used to call normal nursing care. We get into distinctions when we look at how it's provided. If you're eating a sandwich, that's one thing, but if my grandmother is being fed through a tube, that's called artificial nutrition. However, there's nothing artificial about the nutrition; it's the mechanism. If a baby is drinking from a bottle, that is artificial nutrition. Would we withdraw that bottle from the child on the grounds that this is an artificial means of supplying the food?
I don't think it should ever be considered an acceptable thing to withdraw from a patient because, quite literally, when a patient has the food withdrawn, it is usually withdrawn because the patient isn't dying fast enough. There are cases in Great Britain -- the Tony Bland case; there have been cases in the United States -- Paul Brophy, Christine Bussalichi and others. The only reason the court ordered removal of hydration and nutrition was because these people were not dying fast enough. I don't see that.
I wanted to just talk for a minute about the advance directives. I'm sure that you have considered this and I just wanted to get your recommendations on this. In subsection 4(3) we talk about advance directives and we say, at that particular point, that if the person who has become incapable because of any number of reasons expressed some interest or some desires -- "wishes" I think would be the best word -- of how things should happen as he became sicker, they had to be taken into effect. So even though they have an advance directive and then later on they say, "Well, Jeez, I wouldn't want to die that way," and they make some wish and they make it to their substitute decision-maker or to anyone, does that not alleviate some of the concerns you have with the advance directives?
Ms Douglas: I can speak to this personally because I recently lost my mother and when we arrived at the hospital, I was dealing with this directly. What I noticed was that the medical profession, because of the act without the amendments that we're suggesting, there was so much pressure on the doctors in the legal aspect that they didn't seem capable any more of making intelligent medical decisions, decisions that doctors would know and act on.
They were asking questions like, "What did your mother say at this time?" As we said in here, I know at one time my mother said, when watching a TV program, "It would be terrible to be in this condition," and yet she was quite aware that God was calling her towards the end of her life. So they were saying: "We don't know. Do we revive or don't we revive?" and it was a very difficult situation for the family, because they weren't taking into account anything we were saying or how we knew our mother to feel; it was what she said at a given time. I think the pressure on the medical community, because of the legal aspect, sort of robbed them a bit of their ability to make an intelligent decision. They weren't really listening to the family. They were trying to guess what the person had said at some point in her life.
Mrs Johns: All right. Maybe that's something we have to pound out, but in the act it is saying that later wishes expressed have to be considered. I think that may be something that we should send over to the CPSO or someone to make sure that people are aware of that.
Mrs Johns: Yes, but you have an intent if you're the substitute decision-maker for your mother. If my mother watching a TV show said that, but all her life acted on a different statement, I'm certainly not going to say, "By the way, she was watching the FBI and said, `I wouldn't want to die like that.'" I think we have to give people more faith in the fact that the substitute decision-maker in most cases knows what they want, can consider their wishes and put priority to the wishes that those people had.
Mr Hugh Tapping: Mr Kelly is ill and is not here. Our apologies. I'm Hugh Tapping. I am a volunteer with the Canadian Mental Health Association, Ontario division. Beside me is Ruth Stoddart. She is an employee and she will be giving you John's address.
Ms Ruth Stoddart: Mr Chair and members of the committee, as Hugh had said, our president, John Kelly, was unable to be with us this morning. I am an employee of the Canadian Mental Health Association, and my title actually is manager of policy, planning and development. I'd just like to tell the committee a bit about our organization first.
The Canadian Mental Health Association, or the CMHA, Ontario division, is an incorporated, registered, non-profit charity, first chartered in 1952. We have approximately 4,000 volunteers active in direct board and committee service through our 36 branches in the province. Ontario division and branch services and programs are funded through government grants, local United Ways and some supplementary fund-raising activities.
The CMHA has always devoted considerable time to ensuring that government policies, practices and legislation promote the human and legal rights of people with mental illness. For the past 10 years we've consistently called for the establishment of a non-legal advocacy system for vulnerable people.
Our organization contributed to the development of the O'Sullivan report on advocacy in 1987 called You've Got a Friend; the Fram report on substitute decision-making in 1988; the Graham report on mental health reform in Ontario, also in 1988; and the Weisstub report on mental competency in 1990. We also made a presentation to this standing committee in 1992 with the original Bills 74, 108, 109 and 110, the advocacy, consent and substitute decisions legislation.
CMHA, Ontario division, has been a member of the Ontario Advocacy Coalition as well for the past five years. We're also represented on the Ministry of the Attorney General's interim advisory committee on substitute decisions legislation and the family and service provider advisory committee, which was established under the Advocacy Act.
We believe that Bill 19, which proposes the repeal of the Advocacy Act and amendment of the Substitute Decisions Act, Consent to Treatment Act and Mental Health Act among others, requires the attention of every person in the province, because the passage of this bill will affect the exercise of everyone's basic rights.
Mr Tapping: As one of Canada's oldest charities, we have endeavoured to be polite and to work in partnership with many people in the field, including government. When an organization expresses concern, as you will see in our presentation, it's an understatement. This organization has worked for a long time to see Father Sean O'Sullivan's report come to some fruition. Some people, like myself, have volunteered in this field for so long that I was doing it for a decade before I found out it was advocacy that I've enjoyed.
We recognize that the government is moving to cut expenses. The repeal of the Advocacy Act was right in the government's election document, and the people have spoken. But people still need some things which we call rights advice. There's a strange notion around that you can have a right but not know it and therefore someone's content; it won't be the person who doesn't know about their rights. Individuals need help. You have heard and you will hear very many touching stories. I know lots myself. We will have time for questions.
Systemic advocacy is also essential. It's a funny term, that one; I'm not comfortable with it myself. But what it talks about is, it's not enough to just look after this poor, helpless person and that needy, deserving soul; there are problems that go beyond the individual. Some of them are sociology, some of them are literally the training that people pay for in our universities.
There need to be independent advocates. I'm a volunteer. I come and go. I can't keep it up. The field in itself can be pretty heartbreaking, and people leave for that reason. Volunteers like me, sorry, we're not good enough because we're not permanent. We come and go, and by the time we've learned how to do it well, we've had enough, thank you. Independent advocates are sometimes needed because some people, through no fault of their own, need help getting their desires, their wishes in their lives delivered to them.
As the CMHA, we were very clear that we did not want to get some government money to provide advocacy services. We don't want to put our employees in a potential conflict-of-interest situation. We can acknowledge that, like everyone else, we're not perfect, and sometimes those good intentions that our employees and our volunteers have -- well, I think we all know what road is paved with good intentions. We wouldn't want to have people trying to serve two masters.
It should be centralized in some way. Having a whole bunch of people out there in different towns and so on, with no way of learning from each other, seems like a waste of time and money both. People need training. As I said, a lot of people who do this do it out of the goodness of their hearts or because they have a concern. But it isn't easy sitting in a place like this, with those cameras on me. I think it's called "a learned behaviour." Apparently, you can actually get training in how to be in front of a camera and not feel the way I do right now.
The other point I wanted to make is that there do need to be people locally. Having some office in Toronto with a 1-800 number is not going to help someone in a boarding-house outside the city boundaries of Thunder Bay. I'm going to turn it back over to Ruth with some of our specific concerns. She's a lawyer, so she can tell you about this legislation in some detail.
Ms Stoddart: I would like to address our concerns, particularly about the amendments to the Substitute Decisions Act and the Consent to Treatment Act and the Mental Health Act. Most of them are outlined in detail in the submission you have, but I'd just like to highlight some of the ones that we feel are the most important. Unfortunately, some of this gets a bit technical just because of the changes to the legislation.
Some of the concerns we have under the Substitute Decisions Act, in fact most of the concerns, have to do with the removal of any sort of rights advice or advocacy for people who are having powers of attorney activated. One of the first has to do with guardianship of property. Under section 16 of the Substitute Decisions Act, some changes have been proposed which would omit the present requirements for an assessor to explain the purpose of an assessment. It would also omit the requirement for an advocate to explain what would happen to a person if he was found incapable of making decisions. It also would omit the ability of a person being assessed to refuse guardianship.
Instead what is to happen under the new legislation is that the public guardian and trustee will inform the person that the PGT has become the statutory guardian of property and that the person is able to appeal that finding to the new Consent and Capacity Board. What could happen under these amendments, then, is that a person who is thought to be unable to manage property could be found incapable and wouldn't be able to terminate any guardianship without making a motion to court.
Our organization is concerned that people who are indeed quite capable of managing their property might be unable to understand the consequences of a finding of incapacity and also might be unable to understand how to appeal a finding of incapacity. The result of these amendments to the Substitute Decisions Act, we fear, is that the public guardian and trustee, rather than becoming a last resort, could end up becoming the statutory guardian of property for a large number of people.
One of our other concerns with proposed amendments to the Substitute Decisions Act is under the existing section 24. Right now, this provision says that people who provide care services to incapable people cannot be their guardians of property. The amendments to this section would allow caregivers to become guardians of property for incapable people if no one else was found who was willing and able to act.
Our organization's concern, again, as Hugh has stated, is a conflict-of-interest problem arising. If a service provider is providing services to that person, we would question how they could advocate for them as well, particularly if that advocacy involved acting against the wishes of the person's employer.
One of our other concerns is with respect to powers of attorney for personal care. Under the existing section 46 of the Substitute Decisions Act, amendments will remove the word "advocacy." This again is similar to the powers of attorney for property, where a person providing advocacy services could conceivably, under this amendment, be allowed to be that person's attorney for personal care. Again, this would raise questions about conflict-of-interest situations.
One of the prime concerns of our organization was the changes to section 50 of the existing Substitute Decisions Act. This section has been referred to as the Ulysses clause for a number of years. A lot of organizations that work with people with mental illnesses asked to have this section included in the original legislation. What has happened with the amendments to section 50 is that any provisions for rights advice when section 50 is invoked have now disappeared. The person who is granted the power of attorney can no longer revoke the power of attorney, as they earlier could, or refuse its registration.
These provisions were initially in the legislation so that people's rights weren't removed and they weren't deprived of liberty. If these amendments come into force under section 50, the CMHA fears that powers of attorney for personal care under this section could be very much open to abuse, because the person who would be subject to the power of attorney couldn't object to the activation of it, would be unable to seek a review of a finding of incapacity and could potentially be detained against their will, under sections 49 through 51, for up to six months. What happens under these sections is that an assessment of the person who is found incapable can only take place every six months if the attorney is willing to let that happen. So conceivably, a person detained under section 50 could end up being detained for up to six months and not being allowed to make their decisions.
Two of the other provisions of the Substitute Decisions Act we're very concerned about, which I think this committee has heard about already, are the proposed changes to section 66, which delete the prohibition against the use of electroshock as aversive conditioning. Our organization is aware that as far as we know, electroshock as aversive conditioning is only being used right now in one institution in the province, but we still do not believe that it should be allowed to be given to anyone without their consent, and we're also quite concerned that once this provision is removed from the Substitute Decisions Act, this so-called treatment could be used in many more cases.
Finally, under the Substitute Decisions Act, again under section 66, the existing legislation requires various conditions before a guardian is permitted to use restraint on an incapable person. In addition, any use of restraint has to be consistent with a guardianship plan. This second part, the consistency with a guardianship plan, is now to be removed from the legislation. In institutional settings, certainly, there are some controls or should be some controls over the use of restraints. We're very concerned, however, in the boarding-house situation or home care situations, who will monitor guardians and how any unsuitable use of restraints will be controlled.
The Canadian Mental Health Association has three primary concerns about the Consent to Treatment Act. The first one we believe probably could be corrected by more precise drafting. It's the new section 11 of the Health Care Consent Act, which allows variations in treatment without the practitioner obtaining a new consent. There is a part of this section that could be read as permitting a person to be moved to a different place for the treatment, provided the treatment was continued.
We're concerned that in extreme cases a person in a nursing home or some sort of paid care setting, if their money ran out or their finances, they had problems, a person, as long as the treatment was continuing -- for instance, the doctor was still seeing them once a week -- could be moved to some sort of unregulated boarding- home without their consent, with the treatment being continued.
Our main concern is that the new section 16 of the health care consent legislation, which was section 9 of the Consent to Treatment Act, no longer requires rights advice to be given to a person found incapable of consenting to treatment. What will happen under the new section 16 is that the person found incapable no longer has to be given rights advice. This would mean that substitute consent could be given to a treatment without notifying the person of any finding of incapacity along with various other conditions.
We would question, if a person or a substitute doesn't have to be given any information about a finding of incapacity being made, how they're to know that this finding has been made and how they're to know how it could be reviewed. Again, we'd suggest that some sort of rights advice provision be put back into the legislation as exists under section 9.
I'll go, finally, to the amendments to the Mental Health Act. We have two main concerns here: First of all, the change to the current Mental Health Act definition of rights adviser. Right now, rights advice in psychiatric facilities, in the provincial psychiatric hospitals, is provided by the Psychiatric Patient Advocate Office/Advocacy Commission -- it was in transition. The amendments to section 81 of the Mental Health Act will permit facilities to designate and regulate who will be rights advisers. Our concern is that independent rights advice continue to be provided to people in psychiatric facilities, and our fear is the conflict-of-interest situation which could arise if employees of psychiatric facilities are the persons providing rights advice.
Finally, amendments to section 36.2 of the Mental Health Act. This section currently permits a patient in a psychiatric facility to approve that a board-appointed representative is going to act in various situations for them. This representative is the person who is able to allow disclosure or access to medical records. The changes proposed to this section of the legislation basically allow the release of medical records if the patient "does not object." It's been changed from a very active approval process to a passive no-objection process. We're concerned that if the representative doesn't have the patient's best interests in mind, there could be a serious problem with confidentiality of medical records.
In conclusion, I'd just like to say that, as Hugh has mentioned, we've long been concerned about independent advocacy services and rights advice being provided to vulnerable people in this province. We would urge the government to reconsider the effects on vulnerable people of the removal of rights advice and advocacy provisions from the legislation. Thank you.
Mrs Boyd: Given the concerns -- and I think all committee members will want to read very carefully your whole presentation because it was very well reasoned -- would you anticipate there would be many charter challenges to this legislation, particularly under section 7, but possibly under section 12 as well, given the kinds of issues that you've raised around restraint, around detention, around that sort of issue?
Mr Tapping: If history was to be our guide, virtually every legislative change in this field in 10 years has been sure to lead to the sky falling. It hasn't yet happened. I recall the final proclamation of long-past subsections of the Mental Health Act which were going to lead to charter challenges and a wonderful job creation program for the law society. It never happened. Usually these things are human things. They tend to get resolved before the specific wording of whatever legislation gets passed. So no, historically, if that's any guide, it's not going to happen.
Mr Tapping: It would be a lot easier to not pass legislation that violates the charter of rights and then have to go through all the rigmarole of changing that legislation. We aren't that good at fund-raising to be able to do that. My understanding is it costs in excess of $50,000 to just make application to begin the process, so obviously, let's make legal laws.
The Vice-Chair: I'm sorry, Mr Marchese. We're going to have to move on. On the government side I've got three speakers: Clement, Parker and Johns. You've got two minutes, and I'll let Mr Clement go first.
Mr Parker: Thank you very much for appearing before us today and bringing us your concerns. We appreciate the concerns you've articulated. Frankly, I think many of the concerns you've raised are already addressed in the legislation that we are putting forward, perhaps not in those places where you were looking for it, but it's there. What I want to do now is just invite you to meet with us at another time. This isn't the forum in the two minutes that I've got, but I would like to get together with you and we can review the legislation in detail and show you where the concerns you have raised are already addressed.
Mr Parker: Well, I'll give you a couple of examples right now, and if you're happy I'll take up some time on that. At the bottom of page 4 you indicate that you're concerned that in order to overturn a finding of incapacity someone has to go chasing off to a court to do that. If you have a look at page 30 of the bill, if you've got it with you, in section 54, which amends section 78 of the existing legislation, subsection (2) of section 78 -- what I'm referring you to here actually is page 9 and that is paragraph 4 under section 20 of the bill. That indicates that to overturn a finding of incapacity the assessor is capable of doing that. It's only if the assessor fails to find capacity that there is a right to appeal to the court. But the assessor can overturn the finding of incapacity. You don't have to go to a court to have the finding of incapacity overturned.
Mrs Caplan: Your organization, the Canadian Mental Health Association, Ontario division, has been long respected as an important organization with a very significant amount of expertise as well as an interest in fighting for the rights of people who suffer from mental illness and mental disease. Were you consulted by the Ministry of Health prior to the tabling of this legislation so you could assist them in the framing of some of the significant changes in the Consent to Treatment Act?
You've raised a new issue that I'd like to draw to everyone's attention, and that is the issue of passive consent. In other words, if you don't object you are deemed to say it's all right. There are a couple of cases where this is a change in this legislation and it's not only over the release of information, it's also on the appointment of a representative, and that's new.
Could you just expand a little further on your concern, because I share that concern about why that was done. Was there a problem with the old Mental Health Act that it required explicit consent where a person was capable? Now this is a significant change.
Ms Stoddart: You're referring to appointment of a representative under the Mental Health Act. I think the concern is that under the existing provisions of the Mental Health Act the patient could approve who the board designated as the person's representative. Again, I don't have any experience as to what goes on inside the psychiatric facility, but would assume that the patient is asked. You know, the board has appointed this person.
The problem we see with the amendments to the legislation is that the board could appoint a representative and that representative could then act as long as the patient didn't object, as opposed to being asked to approve. It's the change from one to the other. I guess, in the extreme, someone who maybe even was non-verbal or whatever could basically be taken as they didn't say no.
Mrs Caplan: I think that's a new and important point. I hope the Information and Privacy Commissioner's recommendations will help address that, because I think that's one case where people should be able to consent if they're capable to do so.
The Vice-Chair: Mrs Caplan, we're out of time. I'm sorry, we're going to have to stop you there. Mr Tapping and Ms Stoddart, I want to thank you on behalf of the committee for your presentation. You had some very thoughtful ideas in there and I'm sure we'll have a very close look at it.
Mr Simonsen: I have only two pages. I read this ad in the paper and I thought it was important that you hear from someone on the back concessions. I'm not used to making this kind of presentation, so I trust you will forgive me if I stray a little widely on the subject.
The three acts that Bill 19 proposes to repeal or revise were, I believe, subject to amendments in 1995. At that time I attended a presentation by a government lawyer at the retirement home where my father-in-law resides. It was my opinion then, as now, that the government was intruding far too much into the private affairs of individuals and families, that it created more bureaucracy and paperwork, and that it set up new opportunities for disputes and costly litigation. The laws and the changes may have been well motivated, but as you know, the road to a certain hot place is paved with good intentions.
At the presentation I talked to the old folks and found that many of them, as credulous good citizens, had gone to their lawyers to get the new papers filled out. The lawyers' fees had ranged from $30 to $400. I suggested to the government lawyer that the whole thing was a scam to make money for lawyers. She allowed that some lawyers were making "a good thing out of it."
These laws were made in 1992, changed in 1995 and are now subject to change again. A lot of confusion is being created, a lot of expense for taxpayers and individuals. How can you make long-term plans in this area and in any other area of life and business when the rules are changed constantly? Why can we not have simple, straightforward laws so that we know where we stand, and then make it difficult to change them?
The élite and the bureaucracy seem to be of the opinion that us ordinary folks don't know what is best for us and how to handle our affairs, and that they do. Personally, I find this kind of government paternalism offensive.
For a thousand years, we lived by the common law, which was based on tradition and common sense. It was usually just and it served us well. Over the last generation or so, the common law has been pushed aside by administrative laws that often violate both common law and common sense.
A wise man once said, "The best laws are those with which earlier laws are repealed." So let us go back to the common law and common sense. I would advise this committee to draft an omnibus bill that abolishes all laws that have been passed in the last 50 years, perhaps 100, and then disband itself. I guarantee you we would have a better, more prosperous country.
The laws are being created by an élite that often stands to benefit from them. We have many monopoly laws that benefit well-financed lobbies at the expense of the rest of society. The country and its legal system should belong to the ordinary people who in the final analysis pay the bills through their labour. Why are you sitting up there and I down here? It should be the reverse. It's a question of power.
Now let me describe how common sense worked within my own family. My grandmother died about 10 years ago. She managed her 98th birthday and her daughter's silver wedding anniversary party, and then she decided that she had had enough. She went to bed, wouldn't get up, refused food. She was not hauled off to hospital, she was not fed through tubes. She wanted to die and was allowed to. Two months later, she died at home in her little apartment in the old folks' home.
I suspect that in this country, in the absence of written instructions, both the administrator of the home and the doctor could be sued, perhaps even criminally charged for not intervening. That is nuts.
My grandmother had no will. My brother and my cousin obtained a homemade power of attorney from the two daughters. They took them to the probate office where the clerk looked up the names and then issued a form with a stamp on it that authorized them to look after grandmother's estate. They cashed in her investment certificates, paid the bills and divided the rest among the two heirs. Then they made up a statement of dispositions and certified that, to the best of their knowledge, the bills were paid. Then they were discharged from their fiduciary duties. It took a month.
My mother died a year ago. She had been in a nursing home for less than a year. She had Alzheimer's. Near the end, she could not recognize her own kids. She developed two problems: She could not swallow, and also something internal that would have required surgery. The nurse that my brother usually talked to asked him what they should do. "Well," said my brother, "I guess the best thing you can do for her is to keep her as comfortable as possible." My mother stayed in bed and three weeks later she was dead.
When the four of us kids arrived for the funeral, three of us signed a simple homemade power of attorney to the brother who lived nearby. We verbally told him to keep a sum, because he had been taking care of things over the years, to buy something nice for his wife who had been wonderful to our mother, and to divide the rest among the grandkids. Six weeks later, he faxed me a copy of the statement. The cost was $25 for the stamp at the probate office and some value added tax on the funeral arrangements. It took my brother 24 hours to obtain a probate certificate; I am told that it takes six months in Ontario. Also, a percentage of the estate has to be paid to the province up front. We ought to ask ourselves how we can justify inconveniencing our citizens like that.
About 90 years ago, a Danish prime minister travelled to France. He was so impressed with the tall, well-dressed gendarmes he saw there that he decided Denmark should have gendarmes. A writer at the time tells about one of these tall specimens with shiny boots and polished brass buttons riding on a white stallion into a small village in Jutland. The villagers had gathered on the main street in anticipation. As he neared a large mud puddle, the townsfolk sicked their yappy dogs on him, with the result that he fell off the horse and landed in the mud to a roar of laughter. He got back on the horse and rode out of town the way he came and was never seen again. Thus ended an experiment with authoritarianism.
Thanks to such incidents, I grew up in a basically self-policed society. As a teenager and as a young man, I could go about my daily life of work and play without ever having anything to do with cops or lawyers or judges. There were no enforcers whose career advancement depended on writing tickets or winning in court. So I say to the authoritarians, take your intrusive laws, get on your horses, ride out of town and don't come back.
Mr Tilson: I hope you don't think of all members of the government in that tone. Perhaps I can just respond with some philosophy on the topic of too much government. That's what we've been trying to do with this bill.
Mr Tilson: Maybe I should stop at that stage. I think I'm going to call it quits. I think that's the philosophy of our party, that we do have too many laws. We are too intrusive into the private lives of individuals.
Mr Tilson: I listen to stories particularly of our parents and grandparents when families looked after each other. Times have changed. There's no question times have changed. In the past, women didn't work. Most people work, men and women, or at least try to work. So there are times when I suppose, if there is no one else, if there is no member of the family, if there are no friends, or if there is abuse, then we believe the state should become involved, and that's the simple message this bill is giving.
Mr Tilson: I think we all have to acknowledge that there is abuse; there are situations when families simply don't care. My friends, particularly from the New Democratic Party, will tell us that. They'll be itching to tell you in fact that there are examples where there is abuse, and that's true. I agree with them. There will always be abuse; and I think no matter what our political stripe is, we must endeavour to deal with that. I think that's where we differ with our two philosophies. I don't know where the Liberals stand, but certainly with our two philosophies we just wish to solve it in a different way. Thank you for your comments.
Mr Simonsen: Can I just say, on the qualifications for nursing home staff and similar staff, the one overriding qualification should be compassion, and almost everything pales in comparison. Sure, you need nursing skills -- but compassion. If they don't have that, they shouldn't be working there.
Mrs Caplan: I'd like to thank you for your presentation. One of the concerns that I have about this legislation is that if you are in a situation where you are found to be incompetent and it's decided by a health practitioner that someone else is going to be asked to make the decisions on your behalf, in fact, quite contrary to I think everything that most of us believe in, they don't have to tell you. Are you aware of that?
Mr Simonsen: I would depend on my wife or my kids to make those decisions. I realize that perhaps there are some families where this would not work. The subject of euthanasia was raised. Now, we never know what we would do in a desperate situation, but I would think that if I was very sick with cancer, in a great deal of pain and knew that I had only a few months to live, that's an option I would choose for myself possibly. I think if I did, it would not be anybody else's business.
Mrs Caplan: That subject of course is something that's within federal jurisdiction and the federal Criminal Code, and euthanasia is not legal in Canada. The story that you tell about your family actually is a very lovely story. I was touched by it and I wished all families were as loving and generous with each other as the story that you told. Unfortunately, that's not the reality. We know of child abuse, we know of elder abuse and we know of vulnerable people who have been abused even in institutions. That's been the history, unfortunately, of too many vulnerable people. So while the ideal is something we all aspire to, I believe that we have an obligation as a society, that if there is something we can do to offer those who are in a vulnerable situation some protection, we have a right and an obligation to do that.
Mr Simonsen: In the 1960s we started passing a whole bunch of laws supposedly to protect people, but governments don't protect me now. Caveat emptor doesn't apply any more, and there is more cheating, much more than then. In those days, you only had to worry about certain used car dealers, but today everybody is out to scam everybody.
Mrs Boyd: I think Mrs Caplan is right: You're very fortunate in terms of the family experience that you talk about, and naturally, speaking out of that experience, you have views about what the norm is.
The reality is that it doesn't matter what party is in power; parties don't go into government and make legislation unless they have a ground on which need has been established. We're heard here at this committee about the number of studies that were done around the vulnerabilities of people, the tragedies that had occurred. What this government, the previous government, and previous governments before that have tried to do is to have the kinds of protections there when things go wrong, and I think that's very important.
I would take issue with my friend Mr Tilson and remind him that women have always worked. It's only recently we've been paid for our work when it's outside the home. Mr Grandmaître and I really wanted to remind you of that. But you're very right that the changes in our family structures and in the way in which we interact are a very important part of the vulnerability that we face. All of us used to in most cases enjoy an extended family situation where there were others available to assist and to help and in fact to prevent abuse by one person of another. As we've changed our family structure and moved more and more into a nuclear family structure where people move around a lot, those natural protections of a knowing and loving community and an extended family that was available to monitor situations are not there for many families.
That's one of the problems that people who are in legislatures face: How do we look at what we know from evidence -- from criminal evidence, from social evidence, from all of that -- how do we look at those abuses and try to find ways to prevent them from happening in the first place by giving the maximum amount of choice to the individuals themselves? That's the whole purpose behind this kind of legislation, to try and give the individual who is most affected an opportunity to make choices and the right to make those choices in an informed way, and that's the purpose. If we go wrong in that, if we're not doing that in the right way, then obviously it's the job of the Legislature to look at changes that might need to be made.
Mr Simonsen: I agree that there is a lot of stress on families, particularly economically nowadays, and I think a large part of it is political decisions that have been made over the years. When I was young I could buy a house for twice my income, one week's pay paid the mortgage, and mother stayed home and raised the kids and raised them well. Today that can't be done because of the HUDAC legislation and the monopoly that has created, and the planning boards, all the planning bureaucracy which makes a house twice as expensive as it needs to be. Get rid of that stuff, I'll build you a house for half the price, and the families that are now in public housing could be living in their own homes and the mothers that wanted to could stay home and take care of the kids.
Mr Marchese: Mr Cooper, I wanted to say that you've given us your opinion; I wanted to give you mine as well. Mr Tilson talks about too much government and too many laws and you agreed with that. Mr Tilson doesn't say that they passed Bill 26 most recently, which is one of the most intrusive of bills that I have yet seen around here. So it seems interesting that when it's convenient to the government, they pass laws that are very intrusive. When it's not convenient to them, they say, "We pass too many laws."
The other point is too much government, and you said you agree with him in that they are not going far enough and fast enough. I can't see a government could be going faster and in a much more mulish way. If they went any faster it would be a disaster. We're already in a big problem, because you see, as this government's cutting back, it's devastating families who are not working, and once people are not working, they are destroyed.
With respect to this particular bill, what we try to do -- generally, I think everybody tries to do this -- is not to say that families are good or that they're bad, but rather to admit and acknowledge that in some instances some individuals out there don't have families, so they need protection. Someone has to protect them.
In some instances, as we have seen from a number of people if you've been watching the proceedings here, there have been many, many abuses by caregivers, by people who presumably love them. So the point is, how do the laws protect them? It's not that we want to say the families are bad. We don't want to say that they are. We want to acknowledge that some are not. So the point is, how do you build into those laws protections when there are abuses? These are the questions we're raising and the questions that a number of deputations have raised, which we hope the government members are going to listen to.
I would like to respond to Bill 26. It is probably an authoritarian piece of legislation, which I don't like. However, I think in the present circumstances it is necessary because we have to cut and it seems that everybody thinks they're too important to be cut. You know, the police are too important, the teachers are too important, the bureaucrats are too important, the firemen are too important, and the three senior judges give a bad example by saying that they are too important to be cut. It can all be cut.
Mr Simonsen: May I just carry my train of thought through here? One thing the government has to do which I have not seen yet is create an atmosphere in which jobs will be created, in which I can again become an employer, which I used to be. I have not seen that yet.
Mr Simonsen: The risks for me as an employer are simply too great. I saw one young fellow who was starting in the building business, as I did 30 years ago, and he had an argument with a health and safety inspector, so they went over his place with a fine-tooth comb and he was fined $47,000. He lost his house and his business, and the inspectors and the prosecutors took a round, shook hands, "Nice job," you know? It made you sick. I cannot afford to take a risk. If I hire a young fellow, and no matter how well I instruct him, if something goes wrong it can cost me 500 grand just like that. I cannot work under those circumstances.
Mr David Cooper: I'd first like to thank the committee for allowing me to appear here and also for its patience in extending to me an extra 20 minutes, given that I was late, and reversing positions with the previous speaker. I have not compiled a formal written statement as such to complement my oral presentation. At this time I simply wish to discuss my concerns and to present a few valid points that are certainly sentient to my personal beliefs.
This is relevant. I apologize. Although I have not made provisions at this time to view any portion of this video, as it is not particularly sentient to my presentation, I have simply produced it as physical evidence of the fact that I want you to know it is actually in existence.
This video contains a Rogers Community 10 production of myself that I produced for a local cable television outlet outlining how I feel that psychologically damaged individuals should have the prerogative of state- and physician-assisted suicide if they so wish. I am a great proponent of rights for the mentally ill, even to the extent of this extreme measure.
I would also like to add at this time that I am against the dropping of the Advocacy Act. I thought it was a very important piece of legislation. I was under the impression that it was designed for no other reason than to be for the welfare of individuals with severe psychological problems, such as myself.
I've had psychological problems for most of my life. I am 30 years old. I haven't had a job in five years. When I was 16 I had to live in a mental health centre. I lived there for two years and then afterwards I had to live on the street. For the last 10 years I've had to get whatever job and whatever place to live I could. As we all know, the Consent to Treatment Act and the Advocacy Act did not exist in those times. It would not really have been relevant to my situation anyway. I was simply expected to be completely self-sufficient and self-reliant.
That is my primary point here today: that there are so many people who are resigned and are required because of their personal circumstances to be their own advocates, to be completely self-sufficient. I cannot see that dropping the Advocacy Act and following through with other measures, other what seem at a casual glance to be hopelessly bureaucratic measures to reform other acts in relation to mental health, could really be considered practical less than four years before the next millennium. Psychiatry is not supposed to be in its infancy any more. We are supposed to be much more enlightened as a society, and yet some of these measures just seem to be a fallacy geared towards a system that was already abandoned nearly 20 years ago.
If mental health centres were able to guarantee that never again were there going to be sterilizations and lobotomies and shock therapy and other invasive forms of therapy, and if individuals who were required to live in such institutions could expect to be able to live in clean, quiet, enlightened, liberal, pleasant domiciles where they could reasonably expect to be able to have a comfortable existence, then some of these measures would probably be valid. But as it is, given that we've cut back on housing programs, we've cut back on any of a number of other initiatives, people who have psychological problems have their backs against the wall and this is just creating a downward spiral for them. That's why I felt compelled to come today to speak about this.
At the time that the family services act was being designed, I was living in a mental health centre. The people who ran this organization had 24-hour access to me, and in spite of that, no one could be bothered to bring to my attention the fact that these hearings were taking place and that perhaps I would be entitled to give a deposition. The only means I had at my disposal of articulating any grievance about the mental health centre in which I lived was to write a letter to my member of Parliament, as if they would even have known what to do with it. In later years, I became actually a constituent of Mr Marchese. I can only assume that through an unfortunate oversight Mr Marchese did not apprise me of the hearings at that time regarding the Consent to Treatment Act and Advocacy Act that were taking place at the time at which I was his constituent.
On and on through the years I've had to be alone. I don't have anyone to be reliant upon. I guess I feel like I've missed out, I've really sort of missed the boat, and I can certainly appreciate the statements made by the previous witness about how difficult it is to subsist in this society. Bill 19 may not be draconian in nature, but it certainly is I think rather naïve not to believe that simply bureaucratizing further an already marginalized portion of our society is really quite unfair. We have the Mental Health Act. It doesn't seem ever to have occurred to anyone just simply to alter the Mental Health Act to provide the personal liberation that should be available to people with mental health problems in conjunction with what the Canadian Constitution is supposed to stand for.
Every time someone like me gets confronted with an accusation of being psychologically disturbed, it means getting taken to the hospital by the police, who are basically acting as agents of the Ministry of the Attorney General; it means being viewed by doctors who are under the Ministry of Health, following guidelines that coincidentally also happen to be under the Ministry of Health. But all this bureaucratization and decentralization is not really conducive to providing good mental health care. That is further exacerbated if you happen to be a child, because then you've got three different ministries. As the members of the committee I'm sure are aware, all aspects of children's mental health care are administered by the Ministry of Community and Social Services. So it's just a hopelessly bureaucratic situation, and from the casual glance that I have had of the new bill, it does not reconcile all these problems in terms of really spelling out in clear detail how we can ensure that the welfare of these marginalized individuals can be safeguarded.
To further elaborate on what I've been trying to say, as we all know, four homeless people have died on the streets in the last month. I think it just shows that people don't want to take advantage of what's out there because the so-called safety net of our society never really was adequate. People would rather take their chances on the street than worry about being in an unsafe hostel or the hostile environment of a mental health centre.
In my life I've gone from being perceived as a childhood prefect who spent five years receiving piano instruction at the Royal Conservatory of Music and six years singing in one of the most conspicuous and well-known children's church choirs in the city to living in a children's mental health centre as a teenager, to living on the street, to having jobs guarding warehouses and shopping centres as a security guard, to spending years being marginalized as an adult victim of mental health problems. My life as a psychologically damaged individual who is also a law-abiding citizen is difficult enough without having to worry about fashionable whims of society on the one hand, with political correctness and natural law and all that sort of thing, and on the other hand reforming and getting back to basics and all those sorts of things.
We've gone through so many changes as a society. I guess I feel like I'm caught in the middle, like I'm one of these typical generation Xers. If I'd been my age 60 years ago, I could have died in war or in an industrial accident or of an urban plague or I could have died in prison. Ten years ago, as someone who was born out of wedlock, I could have been aborted. As it is now, as a 30-year-old male in today's society unfolding as it is, with the problems that I have, I feel like I don't know that I belong anywhere. It doesn't seem like society seems to be able to make up its mind about where I belong. I know that's the idea of the hearings that we're having today. I'm just saying I don't believe that what is being proposed here today is really the answer.
One other thing I would like to point out is that if you had been truly interested in trying to reach other consumer-survivors such as myself, the best way to have done so would have been to advertise on buses and subways and in bus shelters. To my knowledge, the only advertising that was done about these hearings was in the newspaper, and a great number of mentally ill people do not read the newspaper either because they find it disturbing or because they simply can't afford it.
If we can find some way to reconcile the Mental Health Act, perhaps revise that and bring it in line with what the Constitution represents and make is constitutional, then I suspect that maybe some of these suggestions proposed here today would be more valid. But as it is, I don't feel that I'm prepared to endorse them or be party to them as a member of society who is duly affected by the changes being proposed.
Mrs Caplan: Thank you very much for coming. I think it's important for the committee to hear from people who've had experience, and clearly you understand the workings of the Mental Health Act. One of the questions I believe it's important that if you are declared to be incompetent and incapable of making your own decisions, you have a right to be told that. This bill removes all rights advice but it also removes the obligation from anyone who has made that judgement, any professional, to tell you that someone else is going to be making decisions for you. You didn't comment on that specifically in your presentation.
Mr Cooper: I am prepared with a comment to the fact that you've brought it to my attention. I do agree that people need to be apprised of their condition. When I was 16, I was diagnosed as having schizophrenia. Had I known that was the diagnosis that had been reached and what it meant, I think I probably would have taken my chances with living on the street at that point instead of allowing myself to became psychiatrized, only to wind up on the street years later. I really do believe it is important to know what your diagnosis is, how it will affect you and how you will be perceived by others as a result of that.
Mrs Caplan: There is one other thing that I'd like to just tell you and any of my constituents who are watching, that they should not expect that I can contact each one of them personally to let them know about hearings. Members don't have sufficient resources to do that. So whether it's Mr Marchese or Mr Tilson or Mrs Caplan --
Mr Cooper: At that time I had a visit with him at that office coincidental to the hearings specifically related to those concerns. As I was saying, through what appears to be an unfortunate oversight, I was not apprised of the fact that hearings related to the very thing I'd articulated concerns on were actually taking place.
Mrs Caplan: I can't possibly afford to contact each household to let them know about hearings like this. The costs of government would increase. I'm not suggesting I should be able to have those resources. We rely on the clerk's office to post notices in the newspapers, but we also rely on the media to let you know through radio and so forth that hearings are taking place. People can contact the committee and if there's a space available they can come, like you have, or they can write to the committee or phone a member, as I read into the record earlier today, with something they wanted to say. I would encourage people to feel that they can come forward. It is unfortunate that we can't let them know individually, but we just can't afford to do that.
Mr Cooper: One of the other problems is that people feel so hopelessly marginalized by the government that they might not even feel safe being in these kinds of surroundings. As restraining and unpleasant though it may be, it's more a matter of the fact that this is not something most people with psychological problems are accustomed to, and only through my personal and professional experiences am I equipped to do so.
Mr Marchese: Mr Cooper, we appreciate your presentation. With respect to your meeting with me and whatever discussion we might have had, I don't quite recall what we had agreed to do, but if there was an oversight, this is a good opportunity to apologize for that.
With respect to your comments on the Advocacy Act, I'm one of those who finds that what this government has done, repealed the Advocacy Act, to be a reprehensible act. I believe they're doing a great deal of damage by repealing the act altogether. There are ways to amend it, ways to make it less expensive, if that's what they thought it was, but to completely eliminate it isn't a responsible act.
The Advocacy Commission would exercise its power for advocacy services, which is to say that it was there to help individual vulnerable persons to express and act on their wishes. That's what the commission was there to do, to help vulnerable people, and it's gone now. Rights advisers are gone. It assumes that everybody out there, caregivers and families, are all good, we don't have to worry about it, everybody can go back home now, government is less intrusive, they say, so everything is solved.
Mr Marchese: The point I make is that once they get rid of this commission, we have a problem. When they get rid of the rights advisers we have a problem, because who do vulnerable people turn to for assistance? That's the point. You said you were against the repeal of the Advocacy Act and you didn't elaborate. I wanted to know from you why you thought the repeal of the act was a problem.
Mr Cooper: Actually, I quite agree with your comments. I do feel that it is naïve at best and irresponsible and reprehensible at worst. I believe it was a necessary piece of legislation because so often the only resources that people with psychological problems have are each other, and this means that they cannot act on each other's behalf. They have nothing with which to act. They are powerless against families.
I heard in comments made to the previous witness that supposedly the new changes that are being proposed are a way of admitting that there are certain drawbacks in families in the state in which society is today. However, repealing the Advocacy Act is not any sort of an appropriate way with which to deal with that reality. We needed the Advocacy Act. It was really necessary.
I don't understand why people don't understand that, apart from the fact that there are so few psychiatric survivors who have had the opportunity to ascend to either public life or to a position of public responsibility as those gathered here today have been able to. Being in government constitutes a tremendous responsibility and a tremendous opportunity. I think that sometimes those who are in power really forget that and forget what it can really mean for individuals like myself whom society just doesn't seem to be able to make up its mind about.
Mr Parker: Thank you very much for appearing before us today and for your very eloquent remarks before us. I'd like to pick up on just two points that have emerged in this discussion. One is your comment regarding publication of notice of the hearings themselves. I take very much to heart your point that the notice of these hearings is limited in its circulation. As we've already discussed, that's a question of limited resources and that's a reality that faces us --
Mr Parker: What I want to say to you specifically in response to your remarks is that I take your comments very much to heart and I am going to look into ways of increasing the profile of these committee hearings in my own riding through the mechanisms that are available to me. I'm grateful to you for raising that as an issue.
The other point I'd like to delve into a little bit more deeply, a point of substance, is one that was raised earlier by Mrs Caplan concerning notification or disclosure to the patient when a finding of incompetence has been made. Right now the bill is silent on that point.
You speak to the professionals; they will tell us, and they have told us, that their own professional ethics, their own code of conduct guides them in these matters, and where it is appropriate and possible, such disclosure is made. Where it is not possible or where it is not appropriate they have other ways of dealing with these things. Overall the suggestion there is that we leave it to the people who are trained in these areas to use their professional trained judgement to guide them as to how to handle matters of that sort.
In your own case you said that had you been advised of the finding made concerning you at the time when it was made, it would have affected your behaviour, and would have led you to a choice to live on the streets.
Mr Parker: Let me finish the question and then I'll leave it to you. If it's put to the patient in the wrong way then it will have a detrimental effect on the treatment of the patient. We as legislators have to reconcile those two points of view, and I'd like your guidance on that because it's a question that we're all grappling with.
Mr Cooper: Well, sir, the point I was attempting to make is not that it would have affected my behaviour, but that I would have made a conscious decision about my life, about what to do, because I was not welcome to live at home when I was 19. My parents ejected me from my home when I was 19 due to comments ranging from the fact that they were not comfortable with my homosexuality and my behavioural problems, to the fact that I was constantly a presence around the home and didn't go out and did not appear to do anything constructive. That was the basis upon which my parents ejected me from my home. It had nothing to do with truancy, or with criminal behaviour, or drug problems or anything like that. My mother herself admitted at the time that she had some personal problems which she thought at some point she would examine doing something about. She did not follow through with that at any point between 1982 and 1989, by which point all of these events that affected me had already unfolded and taken place.
That's what I'm getting at. If I'd known I was going to eventually just have to be completely independent and self-reliant, not only because of my familial situation but because of the way in which the children's mental health system and adult mental health system are not reconciled and joined together, then, as I said, I would simply have made a conscious decision to leave home and to try and make it on my own three years earlier than I did, instead of allowing myself to become, as I said earlier, psychiatrized.
Doctors don't have all the answers. I feel that psychiatry has become a modern-day panacea for the manner in which we deal with our personal issues. As you can see, there are quite a number of breakdowns. Psychiatrists and people who run mental health centres claim that they want all these relevant decisions to be left to them, and we've seen in abhorrent examples like Mount Cashel, at the Queen Street Mental Health Centre, and with the life and work of Dr Ewan Cameron and with any of a number of abhorrent examples, right down to much more neutral and benign examples of the sort of neglect that I was subject to, that just leaving it up to the professionals is not really the answer.
I had to live in what was basically an unheated shack for about two months during the winter of 1993 at the mental health centre that I used to live at. Just a few months prior to that, I believe it was between July and September 1993 -- or 1983. I would like to recant what I just said; I am referring here to the year 1983. Between July and September 1983, half of the people, which was eight other residents of the mental health centre where I was living at the time, chose to run away from the centre, to physically leave the premises without permission because they were so demoralized, and no investigation of any sort was made at the time to determine why morale was so low among the residents.
As we've seen from what has been unfolding, commonplace all over North America in the way in which we've been examining the past histories of orphanages and mental health centres, we can't just simply place it in the hands of doctors and caregivers.
Mr Cooper: Thank you. Are there any further questions before I go? No? Okay. Thank you very much for allowing me to speak. I hope you will be willing to take most of what I said to heart, because I know I certainly do.
The Chair: There's one matter before we -- perhaps two. One of the individuals, Ms Hall, who was to make a presentation yesterday and unfortunately was not able to, cannot attend except for today at 5:30. We're going till 5:30 and the question is, I want your guidance as to whether or not we will permit her to speak at 5:30, which means we'll go till 6.
Now we can deal with Mr Marchese. I just want to make my position clear. I attempt to be fair to all caucuses. I attempt to allocate the time fairly to all caucuses, and I must thank you in advance because your cooperation has made my job easy.
I am concerned. I feel I have another obligation; that is, to provide the time allotted to our guests. I know that wasn't your intention, Mr Marchese. One-minute questions I'm not concerned about, but a debate that detracts from their time I am concerned about, and I'd like your guidance as a committee on that.
Mr Marchese: Just to say that you've been a very fair Chair all along, so that's not the issue. I had asked an earlier question to the parliamentary assistant based on what the Toronto Mayor's Committee on Aging had said. One of the concerns that they raised, that Ms Neely raised, was that to make paid caregivers guardians and to give them priority as caregivers over the public guardian in trust as a court-appointed guardian was a problem, that it leaves itself open to a great deal of possible abuse, particularly given that there are no rights advisers any longer, that there is no requirement to produce financial reports any longer and that there's an elimination of restrictions on the use of restraints. So it's a problem.
All I asked the parliamentary assistant was a question. I didn't want to argue with him; I don't want to argue with him now. Have you thought about what people have been saying with respect to this? Have you thought of either eliminating or amending? That's all I ask. All I want from him is a quick answer. If he doesn't have it now, he'll give it to me later, another time, because I will ask it again. That's all.
Mr Tilson: I guess I can briefly make a comment that we believe the court should have the discretion to appoint service providers where appropriate. We are confident that a judge, a court, can decide what is best for an individual in the circumstances you described and address any potential conflicts.
Mr Marchese: We'll come back to that. Perhaps Ms Boyd has something, but I'll come back to it another time. That's fine. I just wanted to know your answer and that gives me a fairly good sense of where your thought is at the moment.
Mr Tilson: I'm open to debate this at clause-by-clause, and if you have suggestions to put forward we'll be pleased to entertain them. You asked what our position is at this particular point in time, without hearing further comments from delegations that are coming forward. We still have two more weeks of hearings. There may be some comments that may be made, and if not, if some of the delegations do not make presentations on this particular issue and you wish to at the appropriate time, we'd be pleased to entertain any suggestions that you have to improve the legislation, as usual.
Mrs Boyd: Since we have a couple of minutes before 12 o'clock, on another matter, a number of the delegates have talked about the issue of volunteerism, certainly the government side have talked about volunteer advocates and the adequacy or lack of adequacy of volunteer advocates in the absence of the Advocacy Commission.
I'm a little puzzled that we weren't all given the report the Advocacy Commission wrote in 1995 on volunteer advocates. It's a discussion paper. It has a number of models around volunteer advocacy possibilities. I wonder if I could table it with the committee and ask that copies be provided to everybody. I think it's important that we know this work has already been done and it's not as though the Advocacy Commission was in any way suggesting that volunteer advocates were not appropriate. I think it's really important.
I'm not sure that the Advocacy Commission didn't add this to their package that they gave us, but it hasn't been called to the attention of members, and I think it's really important for us to look at, since we're hearing again and again from delegates that if we're not going to have the Advocacy Commission, then which of these other models could we have? We may want to set aside a little bit of time for us to talk about some of the suggestions in here, since it seems to be something that we're all very interested in having a bit more detail about and certainly the people from the Advocacy Commission didn't have time to talk to us about the models they had looked at.
Mr Tilson: Just a comment on that. You're suggesting that we set aside a time frame to discuss what goes on, what has been reported in that report. We'll be reading that and we'll be reviewing it. Mr Reville has come to this committee and has expressed his views; the Advocacy Commission representatives have come and expressed their views; we're going to have -- if we haven't, members of the committee will have an opportunity to read that, will have an opportunity at clause-by-clause debate, but I don't really think that to take away the rights of other people to come to this committee to set aside a specific time to debate that particular issue. I think our obligation at this point is to hear from as many people as we can -- I doubt if we'll be able to hear everyone, but as many people as we can -- and then, at the appropriate time, to debate that very issue. I'm sure, knowing what your views are and Mr Marchese's views, that we'll have some very stimulating debate.
The Chair: We have members from all the caucuses here. Can we proceed with the afternoon session of the standing committee on administration of justice. Our first submission will be from the Ontario Psychiatric Association, Dr Brian Hoffman and Dr Lucien Faucher.
Dr Faucher: I'm here as president of the Ontario Psychiatric Association and my colleague Brian Hoffman is chairman of our legislative review committee. I should tell you a little bit about who we are in getting started and why we're interested in this legislation.
Essentially, as you know, psychiatrists are all physicians. We're all specialists, interested particularly in the treatment of mental illness. We're interested in the broad range of all the problems of mental health and mental illness. So we're here as physicians, as psychiatrists and we're as an association as well because we represent all the psychiatrists in Ontario.
There are roughly about 2,000 psychiatrists across Ontario, many of whom work in hospitals, many of whom work in their private offices. Particularly in hospitals we inevitably become involved in issues of capacity. I think it's a very natural process for our colleagues in general practice or in surgery or in other specialties to turn to us when they have a patient who's disturbed and they're not quite sure what to think of them. It's very much part of our training and part of our day-to-day work to be able to help them out with this. So we're very directly involved as physicians in the application and the day-to-day application of these laws and in helping out our colleagues.
Actually we're here, by and large, to support the new legislation. We're quite happy with the tenor of the legislation, with the changes that have been made, by and large. I'll speak about that in a broad sense and then my colleague Dr Hoffman will go into more detail.
I particularly like the stated purpose of the changes in the sense that it purports to help patients move through the health care system with fewer barriers to care, that it would be workable and have fiscal responsibility and would give more responsibility to family members to make decisions. That's very easy to support as an association of psychiatrists, so we're here particularly to support the legislation.
I'd like to mention something that always bothered me about the existing legislation in the consent to treatment, and it's a subtlety, but I guess psychiatrists are used to subtleties. There was a kind of underlying assumption that physicians were to be suspected, that physicians may not have the patient's best interests in mind. The whole tenor of the legislation, of the laws was almost to protect patients from physicians. That wasn't said, but it was sort of felt as an underlying premise. I think that was sad because that's not the case. We're very interested in our patients' welfare. We're very interested in their rights to get timely care and to have access to care. I think that should be said.
Another thing in the existing legislation that seemed a bit along the same lines was the idea that families were perhaps not given the recognition they may deserve, by and large, in wanting what was best for their family members. I think the new legislation has brought that to the fore and corrected that.
The idea of having a presumption of capacity first and foremost is really important. I think it's safe to assume that most of our patients have capacity to consent to treatment, and to start off with that assumption makes sense, and to only rule it out when we have very good reason to do so. This is particularly important with an aging population and issues of aging in which the presumption of capacity will become more and more important.
I mentioned that, like it or not, we're involved in capacity assessments in helping our colleagues out in hospital settings. It's not written into the legislation, but we certainly play a role in that capacity on a day-to-day basis and it may be worth considering the role of psychiatrists in that regard.
Dr Brian Hoffman: Thank you for allowing us to present today. Not only am I chair of the legislative review committee of the OPA, but I also run a day treatment unit and community outreach program at Mount Sinai Hospital. My clinical interest is in treating very ill psychiatric patients.
There are tones and implications in the current legislation that made it very difficult for us to treat psychiatric patients. There are some improvements in your proposals that we wish to support. Earlier this week, I spent a couple of days at an inquest in Toronto that you have been following regarding Lonnie Clemens, a young man who died directly resulting from decisions whether he was capable or incapable of consenting to treatment for constipation, in most cases a trivial condition, that within four days became life-threatening and he died.
I urge you to listen very carefully to the recommendations from the coroner's inquest. The timing was brought forward so that their findings from the lay public having looked at the very practical implications in one man's life could be brought forward to you for your consideration, without your worry of perceived bias either from the advocate side or the professional side. Certainly the jury is going through a complex series of deliberations.
It may be that his death was related to not just the content of the legislation related to capacity and consent but also the process of the legislation. The death occurred within eight weeks of the introduction of the legislation, and to this day, except for a very few academics in the province, very few professionals can remember, repeat, act on the legislation because it's so complex and incomprehensible.
To expect not just our profession but roughly 100,000 professionals in the province to get on top of this over an eight-week period was unrealistic. We had two and a half years to review the legislation, but it wasn't till February, two months before implementation, that we had regulations. Because of the lack of regulations, those of us who belong to professional bodies and are educators were unable to formalize our recommendations to professional groups, not even knowing which professional groups would be involved, what the standards of capacity assessment would be and what the rules regarding other components would be. We were totally paralysed. Even though the leadership understood the legislation, we wouldn't have wanted to mislead our membership in any way. Getting some, what appears to be minor, area wrong just becomes totally confusing to professionals.
Before we touch on the content, you really must carefully consider the process, and in particular, what kind of time line you give us, not just to review your current proposals but to give us time and funding and means to educate after regulations are produced that have a direct bearing on professional actions and judgement.
To be a bit more specific about the content, psychiatrists generally would support the removal of the rigid criteria that exist in regulations, section 4, regarding capacity assessments. The rigid checklist of procedures is not how clinicians think. It's a legal mechanism, but when you study how clinicians think, they think in patterns. They look for connections, not a checklist. When you look at someone and you're wondering whether they're capable or incapable, in 95% of the cases it's quite clear: You've got an Alzheimer's case; you've got someone who's quite capable. In trying to understand the law, they realize, "Gosh, I should have asked these questions." No, because in fact the assessment is based on your total picture, on history, on past psychiatric history, on medical history, on current mental status, on observations of others.
If I tried to get a paper published, and I did, on capacity assessments and I recommended to professionals that they use a checklist only on existing answers and observations, that paper would be, and in fact was, rejected because a clinician quite correctly pointed out, "That's not how clinicians work." In the vast majority of cases, yes, you can do a legal, but when it's complicated, when it's complex and critical, you must consider all areas of information that are available to you over a period of time from all sources to come to a reasonable, reasoned decision. That's exactly what's missing in section 4 in the regulations.
It may be contributing factors to cases such as Lonnie Clemens, when decisions are made very quickly without all available information. In fact, all available sources of information were not elicited, were not sought, even though they were in the same room. To the degree you checklist things, you interfere with the best thinking of experienced clinicians.
The next point I wish to make is to reiterate an old point of the flaws in reasoning when you separate psychiatric patients from the physically ill patients. To develop two different sets of laws is not something that makes any sense in current psychiatric thought, with the qualifications that psychiatrists in this country have, as physicians first, and where patients are usually treated in general hospitals.
Three areas where you continue to discriminate against psychiatric patients, perhaps interfering with their treatment and certainly stigmatizing psychiatrists as people not to be trusted and psychiatric units as not to be trusted: First is that you make rights advice mandatory for a psychiatric patient, not for the physically ill, so that if I treat, and I do, a patient with neurosyphilis and brain disease, there's no mandatory rights advice, and I treat that same patient with identical symptoms with schizophrenia, then I must. It makes no sense in clinical practice and it leads you down the garden path that if you have rights advice for psychiatric patients, you should have it for all patients, when in fact I would say that all patients should be treated equally. But why are you setting up practitioners to be seen as untrustworthy and setting up an adversarial system in what should be a therapeutic alliance?
The second is, you block admission to a psychiatric facility, even if it's a general hospital, which can be overruled by a person who's deemed to be incapable, a clear lack of logic, when in fact I could be treating a similar patient with neurosyphilis or brain disease -- post-traumatic injuries -- and the patient would not be able to thwart their own best treatment as recommended by a professional and approved by a substitute decision-maker, whom you also continue to disallow and disfranchise with your legislation.
Thirdly, the emergency treatment of patients considers severe suffering. You don't define whether that includes mental anguish. There's the danger it would be interpreted as only physical pain and not mental pain. This is not the route that many of the states in the United States have gone, with over 50% of them recognizing mental conditions. You put an emphasis on serious bodily harm and again discriminate against psychiatric illness.
On the more positive front, you have allowed treatment after a capacity review board has determined the person is incapable. Under the current active legislation, we would have had to wait seven days. It makes no sense. You've got a professional who is meeting professional standards, you've got a substitute decision-maker who cares about the patient and who has been screened by the treatment team, you have a Consent and Capacity Review Board which has given an impartial hearing. I am still aware of psychiatric patients who, through appeal mechanisms, have gone six months and more without treatment, sometimes in solitary confinement because they're so dangerous, and these are cases you would know of in the law because they're reported in Fleming v Reid. They're bad enough, but to routinely block treatment, even without an appeal, makes no sense after the number of people who have supported the treatment decisions.
One last point I'll make: I don't even know if it would go into legislation, but a flaw concerns the capacity review board, in that they have no funds for education. I've been on the capacity review board for the past eight months. It means that as a hearing member, or before that as a psychiatrist appearing, we never were educated and to this day have never been educated about previous findings. It means every case starts from scratch.
I have been at more than one review board that before we started we knew we had no jurisdiction. It took three hours to convince the applicant's lawyer that that was so. I think it's because of a lack of educational process. That lawyer was told by the chairman, but he wanted to give his argument. If it had been in writing that these cases had determined this process, then I think you would have saved everyone not only the expense but the anger that flowed from that hearing by the applicant, who was not the patient, at his frustration because his lawyer had pressed. He and his daughters were furious at the health care, at lawyers, at government, because of an educational process.
Certainly, as psychiatrists, we would love to have information about what the review boards are doing, what their findings are, and yet Michael Bay tells me there are no funds for education. Something has to be done about that so we don't start from scratch.
Those are a few of our points that I hope you'll take constructively. We do support many of the changes that you have brought about, feeling that they are more supportive of the physician-patient relationship than the previous adversarial system that was being promulgated by the legislation. Thank you. We would now invite any questions that you have.
Mr Marchese: Thank you for your presentation. I do have a few questions if we have time and if the answers are also brief. With respect to the Advocacy Act and the Advocacy Commission, do you have any comment about that? Because this government has said it's repealed.
Dr Hoffman: In essence, we saw the powers of the Advocacy Commission as far too broad, far too extensive, perpetuating the adversarial system. I think the government does have now an obligation to protect vulnerable people who are in institutions. It's my understanding that there is legislation in place in terms of the Long-Term Care Act and facilities that will do that. I think that's a better route to go than the broad, sweeping Advocacy Act.
With respect to rights advice, it makes it mandatory for psychiatric patients that there is rights advice given, and some people think that that's perhaps, if the psychiatric facility is the one that determines who the rights adviser is, a conflict, they argue. It could be a conflict. But you're saying, simply to have patients who are psychiatric patients getting the rights advice creates a problem in terms of the perception that psychiatrists are not to be trusted. Are you saying rights advice should be given to all patients as opposed to singling out mental patients? Is that what I understood you to be saying?
Dr Hoffman: I would like to clarify our position on that, and that is, there's been in the legislation a melding of two different processes. One is notification of the finding of incapacity, which I think is a professional task, an ethical duty when we find someone incapable. I think it should be in professional standards because if I have a paranoid patient who's angry, who thinks I'm a member of the FBI, if I then must say, "You are incapable," then he loses control, he loses face, he's embarrassed later, feels badly, and we have trouble forming an alliance. If on the other hand I can show some judgement here and say, "We're having trouble reaching a decision here on what's best. I would like to bring in your father or your wife and bring them into the equation," then it's unlikely we're going to get that escalation of anger that the adversarial system brings in. I think we need some judgement about that and I think the profession could develop that, knowing that the person still has to be told of their rights.
I'm not sure a professional physician -- that we know anything about declaring rights. So I think there's a government responsibility to educate people. I think institutions could be made responsible to do that. I don't see a conflict at all. You've got a professional meeting professional standards, you've got a substitute decision-maker who is being screened by the professional who's going to act in some way, you've got another body telling them their rights, and you're going to have a fourth body, in fact, that the person can go to. I think that is more than enough rights and time and effort to be an efficient system.
Mr Tilson: Thank you for your comments. I will say, Dr Hoffman, that we have asked for the recommendations and the results of the inquest. I guess it's expected next week or in the next couple of weeks.
I think we appreciate your acknowledgement of the goals of restoring balance to the situation, taking away the presumption that all health caregivers are suspect. Many people have come to this committee and many people have called us, and that has been the response with respect to the current legislation that exists.
I would like to move away from that into an area that you didn't really talk about, and that has to do with financial incapacity, and talk about the problems that individuals may have; specifically, when I say "financial problems," financial difficulties, practical problems such as exploitation, failure to provide necessities of life, those sorts of things. I don't think we've really heard too much about that.
Dr Hoffman: It's an immense problem in psychiatry. Once there's a dangerousness standard and the person is admitted involuntarily to hospital, it is not much of a problem any longer, because we must go to the public trustee with a finding of incapacity, so that's okay. But both depressed and manic patients who are quite ill and in the community and not needing involuntary hospitalization can in fact literally decimate their financial resources.
I've seen a pharmacist who became paranoid his wife was having an affair. He started sending his money down to the States. He planned to quit his job and move to the States. Trying to find a way to treat this man was absolutely impossible. In fact, this story ends rather sadly with a suicide before he was ever admitted to hospital but after he had shifted money down to the States and lost.
It is a major problem. Psychiatrists have developed some expertise at assessing financial capacity. We do it, but we do it because we're trained in it and because it's expeditious compared to any court thing. So we're pleased with the power to be able to help people in that way, although it's an unusual power to give, since it's not directly related to treatment.
Mrs Caplan: Very nice to see you here, Dr Hoffman, and welcome, Dr Faucher. You raise a couple of issues, one that's been raised before that I think is particularly important as it relates to the Clemens inquest. The Clemenses are constituents of mine. I have my own views on reading the legislation and I feel that Lonnie should have been treated, especially given his record of incapacity. I want to be on the record as saying that while I had problems with the previous legislation, I felt that was something that was more than unfortunate.
I think this legislation would allow the same thing to happen again, and I would refer you to the definition of treatment where, for the purpose of incapacity, clause 2(1)(g) says, "A treatment that in the circumstances poses little or no risk of harm to the person." While it does refer to "apparent distress" as opposed to "serious," you might get a different response from the attending physician, but if anything this makes it worse because it exempts this, as you described it -- and I wrote down your words -- trivial procedure from this legislation. I think that's a potentially serious consequence and would ask you to think about that and perhaps suggest an amendment, because while we don't want every low-risk procedure to be captured by this, there's got to be a way to allow this to opt in in those kinds of situations.
The other point I wanted you to speak a little further about: The Consent and Capacity Board has no mandate for education, and this legislation doesn't give them one; therefore, the ministry has no obligation to give them resources for education. If a mandate were given, it wouldn't require an automatic flow of resources, but it would alert everyone to the fact that there is a requirement for education, put an obligation there. While I know some informal things are being done to educate, I'd like you to speak to that. Do you think this bill should contain a mandate for education of the kind that you mentioned, and education of families and consumers and professionals, about this legislation?
The last point: Was the Ontario Psychiatric Association formally consulted by the minister before this legislation was tabled for first reading? Did you have a chance to meet with him and offer him your advice?
Dr Hoffman: I appreciate your comments about how to address the issue of funding for education, because obviously we must first address the need: Is there a need for education? I would argue very strongly yes, in many different areas, not the least of which practitioners and lawyers who are appearing, but ultimately even review board members such as myself. I view it as one of the most unique boards I've ever sat on, that I have to educate myself.
I understand the issue of which procedures are included under treatment. There's the danger that things that aren't included would be required under common law, and that would certainly create a problem when you're doing, for instance, a rectal examination, as in this case. The plus side -- and I'm not quite sure how to get out of it. I suppose if you included it under "treatment" but then excluded it from "consent procedure," trivial procedures, maybe that would be a way of developing it.
What is pleasing about the legislation is something we've argued for a long time: a preamble stating its purpose, that it is not just for rights but for treatment of the incapable person, involving the families in the care. That would directly affect the attitude people bring to such examinations. As Lonnie, where when you come in with a rights attitude towards treatment, then you think legalistically, and if you bring it back towards the middle, hopefully clinicians will think clinically, with a rights component. I really think it's important that we teach clinicians to not think like lawyers. There's a different way of approaching ill people that must be compassionate, caring, think in patterns and not think in checklists. When the going gets rough, you need an expert; yes, he can come in and do some checklist work, but the comprehensive history and mental status is always critical.
Mr Errol Young: Thank you. It's very good to be here. A few familiar faces, but still a strange environment for me, I must admit. This is Joyce Santamaura. I'm the co-chair, mainly by fact that she didn't want to be, and I apologize --
Mr Young: -- but she's a stalwart supporter of what the alliance is doing. You see in our submission we've really put this together quickly. This is a work in progress you have before you because we had to try to make some sense out of this, which is the copy of the bill we have.
Plus this is a very difficult time of year for families. You may or may not know, but families with people with mental health problems find the winter solstice challenging, and my family is personally finding it challenging. But in spite of that, we've put this together and we wanted to give you some idea of what the family alliance was and what we're trying to do. You see, we hope to work somewhat on a more political footing -- we've just started -- than other family organizations have, and we're also trying to coordinate family organizations together. It's a rough road but we're trying to do it.
Because of the mental health reform process, a process which I think has almost unanimous support in theory -- whether it has adequate support in funding, we will see in the next few years, but we are also involved in that. A number of us sit on the mental health steering committee, so that's where we have our input, and we sit on it as family members.
Bill 19 offers many problems and challenges to us, of course. First of all, we find it close on the heels of the original bill, very close. In terms of normal bills, the original has had no life at all, and if there were mistakes being made under it, I would agree with the previous speakers that it sounds to me more like process. I'm not blaming, but it sounds to me more like process than details, because we search in this bill for an improvement and we don't see improvements. We see difference and we see some things that are disturbing, a few things that are good. We don't really see overall improvement of what we had before. We actually have people now poring over the 110 pages of the bill and you will be hearing from them in other guises. They will have a lot more knowledge about the bill than I do at this stage, but I'll try to give you at least the point of view that we've come up with.
Let me state how we relate to consent and treatment as family members. Most of our relatives are adults and they end up being children, friends, parents, mates etc in many relations, in any human relationship you can have to the 5% of people who eventually come in contact with the mental health system and the minority who have consent problems. If we're coming from a point of view, it's more in the guise of the old act, not so much the rigidity of the old act, but the old act did respect the fact that our relatives are citizens; they have rights and privileges as citizens. That, to us, is extremely important on many levels.
The doctors who appeared before you talked about that as well, praising the legislation because it gives more recognition and more responsibility to families and it does go into ranking, although that's under the other legislation as well. But you've got to realize that I'm a lot older than my son. I don't know how old you think I am, but I'm a lot older than my son, by some 30 years. I do intend to die before him, and I'll tell you, he will remain ill. Put the two together. If I'm there, if I'm put forward as the person to look after his rights and privileges, how am I going to do that from the grave? I won't be able to do that. There has to be some systemic way of doing that. The previous legislation did that. This legislation doesn't really do that or doesn't give me pause to think that his rights will be protected in those ways. So that's the stand we're coming from. We really are on the side of consumers in saying they are people, and when you take away their rights, it better be for a good reason; you'd better be able to justify it.
We do know, though, that at some point some of our relatives have rights taken away and need rights taken away for the protection of themselves and others. And we support that, because we see that as an emergency situation naturally growing out of what mental illness does to a person's mind, a person's life, their future. It happens.
As family members, we are called upon to perform functions of attorney, decision-maker -- under this act it's going to be rights adviser -- and that's usually very appropriate. We assist our relatives in many ways when they're feeling better. We help them financially with housing, medical and vocational advice, transportation etc. So we probably know our relatives better than most. At the same time, as adults, they have the right -- and do so in many cases -- to restrict information from us, keep information from us. They have that right, and I don't necessarily want to challenge the right, but it does hurt the ability of families to help. So we labour under that, but we also understand it on another level. The bill really can't and doesn't correct this.
I did go on, on page 3, to outline a few areas of the bill where we're not sure about what it means and what's going to happen. I guess another area is, for the bill as a whole, we're not sure how it knits together. We know there's a different philosophical standpoint, but we're not sure how it comes out. Again, you'll hear more on that later.
On page 78 -- let's see what this deals with. As family members, we trust professionals quite a lot. At the same time, we have been victims of malpractice or dubious practices by practitioners as well on all levels: social workers, psychiatrists, nursing staff. For the most part, 98% of the time, wonderful, but those 2% can do a lot of damage, especially considering the ability to incarcerate, the ability to drug, the ability to take away rights. Those are serious skills that they have.
We see in the bill a reliance on good faith, moving away from liability. This may be normal legislative language, but to us it smells like you're trying to take accountability away from those who are administering sometimes extreme powers. Police as well are included in this. I don't think the bill can do that constitutionally. I think there's a common-law ability to sue if you've been wronged. This legislation might be able to do that, I don't know, but it shouldn't.
I think the doctors who are sitting here should have a legal responsibility. No matter how good-natured they are, no matter how good-intentioned they are, if they actually do harm against the Hippocratic oath, we have to have a right to have some recourse, not only to help the family involved but to say to the doctor: "Oh, I better not do that again. It'll affect my bottom line." Basically in society, I don't know what other recourse there is. We don't believe in corporal punishment or anything like that. That's the only one we have. So to me that is an important area to look at.
Page 54: I think this is exactly the same thing, good faith, just pointing it out again. You use the term "reasonable effort" to find a decision-maker. What's a reasonable effort? A person is brought in by police in handcuffs; they're erratic, they're shouting, they could probably hurt themselves or others. Does "reasonable effort" mean one call down the hallway of a hospital to find out if the relatives are around, or is it one phone call if they happen to know where to phone? You wonder about reasonable effort.
The reason I'm worried about this is not that we don't want to see doctors perform emergency procedures to protect the immediate health of the person. If you find somebody bleeding on the road, you stop the bleeding, that sort of thing. And I agree with them, it's not much different than regular health care procedures. But there are irreversible procedures, such as ECT, such as psychosurgery, which may not be performed exactly in an emergency situation but stemming from it. We don't want to see those procedures performed without more than just a reasonable effort -- with a clear effort, some sort of liability, for the hospital to actually go searching for people and find those people before extreme efforts are taken. We don't really see that in the legislation.
The next page, 49, here we deal with conflict of interest. I know this government doesn't like rights advisers too much and it certainly doesn't want to pay them. Then don't have the institution that's incarcerating our relatives or treating our relatives pay them to come in and give them rights. My family, in dealing with an institution -- this was in the early 1980s -- had only the institution to find out about the rights. We had to ask. We called up the chief psychiatrist and asked what our rights were, and she told us we didn't have any.
I don't know whether that's true or not even today, but I'm telling you that there are more things going on in the head of the person who works for the institution, like their job, like their promotion, like not making waves, that are realities that can get in the way of the rights. Remember, I'm going back to the beginning. We want the families, but we also want our relatives to have their rights restored as much as possible and as soon as possible. This doesn't do it. So I would like you to remove the ability of the hospital or the institution to appoint a rights adviser -- simple as that.
Who would do it? I don't know. Right now there's someone. When my son is in a locked unit, the next person after the psychiatrist who comes in is the rights adviser, and I'm glad they're there. He should be there. Now, if it's a volunteer, that's fine. I don't know who can do this on a regular basis but a paid person. If you're not going to pay them, then there should be some ability for a hospital to bring in a third party. There has to be some neutral agency looking at this, because we're dealing with human rights.
The next one deals with communication, and I'll just briefly go into that. The multicultural nature of Toronto means that you don't know who's going to walk in the door. We've heard tales of a Somali woman being obviously floridly psychotic, but the first thing they did was take her up and a couple of males stripped her. This was nothing improper. Probably happening to most women it would be disturbing but not bad. It was horrendous to this woman. It changed her life, because she remembers it even though she was psychotic. Culturally, it was totally, totally wrong. There have to be some sort of cultural interpreters there for people, not just language interpreters, when you're dealing with the multicultural.
A public guardian should not be able to delve into the accounts of the people they're trusteeing for services. For legitimate costs, fine, but if every time the family makes a phone call to a trustee, that trustee can charge the patient by the minute, that's ridiculous. We're talking about some of the poorest people, people who have been impoverished by mental illness. Mental illness impoverishes them. Inappropriate -- totally inappropriate.
On page 5, you'll see a set of recommendations which I don't recommend. I actually recommend these recommendations. They're slightly different. I told you it's a work in progress. Late last night, I changed some of them. So I'll read through them and then give them to your clerk so they can be redistributed. I'm sorry for that.
That the province maintain an independent system of rights advisers -- that's a wish list -- but failing that, it is imperative that there be a mandated body that will provide education to vulnerable persons and their substitute decision-makers on their rights and responsibilities under the legislation.
That any emergency treatment facility be obligated to involve cultural interpreters when dealing with people who cannot communicate their consent in all but the most extreme cases. Again, somebody bleeding on the road, you help them, but once you have breathing room, you delve into it in a culturally sensitive way.
That it be mandated by this act that vulnerable persons be informed of the change of their status prior to any treatment being administered. That's not in the body of my work, but it became clearly apparent.
Let me tell you, my son is right now under whatever the previous bill is. He's in Sunnybrook. The first thing the doctor did was say, "I'm changing your status professionally." Wonderful; I'm glad she did it. She didn't have to. That disturbs me. Unlike the doctors who were here who want freedom from legal restraints -- I'm sorry, they have a legal obligation to deal with their power in an appropriate manner and they should learn the checklist. I mean, they're going to make their decision based on their holistic view, the gestalt of the situation. We know that. They wouldn't go through the checklist unless they did. But you've got to have some sort of legal formality before you take away people's rights.
You mention ECT. Why? It's the only procedure you're mentioning in the document. It seems out of place. It is a very controversial procedure for families and consumers and practitioners. So I suggest you deal with it in a more rational way, in other legislation when you're dealing with all treatments, if you must, but not here; it doesn't make any sense.
I thought I was coming here and I didn't have much to say beyond this. I mean, I don't think I have the greatest depth in this act. I tell you, I have not read every word. Listening to the doctors beforehand, if I were a psychiatrist, which I'm not, I would say they look like -- and they're good people; I have no doubt about that. But they come to you with sort of a professional paranoia. They're saying, if you have legal constraints around them to protect people's rights: "You don't trust us. Why don't you trust us?" That's one way to look at it, and it's a very paranoid way.
The other way to look at it is asking the doctors, "Where is your accountability?" When you're accountable, when you have an accountability procedure, it not only protects the people you're dealing with -- patients and families -- it protects the doctors. "Yes, I did this, this and this, according to the rules," whatever rules are there. They don't want rules. They want to do it on their good graces. There have been many horrors done to people by the good graces of the medical profession; we know that. Family intervention, assigning rights, may or may not help in correcting that. Certainly liability helps in the long term in correcting that -- not on an individual basis -- and that shouldn't be taken away.
I was very disturbed by their attitudes, coming up here and whining, "Why don't you trust us?" I do trust them in many ways, but I certainly want an eye looking over them, and a powerful eye. Also -- and they raised the issue for me; I didn't see it in the act -- why don't capacity review boards have some sort of history and education presented to the members and those undergoing the process? There they made legitimate sense and I support them completely in that.
Mr Tilson: Just with respect to fees, one of the questions you mentioned about fees, I can understand certainly you made the comment that in some situations one's estate can be depleted. That is a serious concern. I can only assure you that the Attorney General hasn't made any new decisions with respect to new fees that are going to be required with respect to this legislation. However, there are a number of services that cost a lot of money -- mediation, appointing private guardians -- that have a significant cost. An application to a court for guardianship normally costs in the range of $3,000. Mediation costs $100 per hour, depending what you're getting into, of course, in the private sector.
The question is, how much should the taxpayer subsidize these proceedings? It's a clear situation that if one's estate doesn't have the money, the state will have to come in, but clearly if people are able to pay for certain services, it's just like anything else, whether you're competent, incompetent, any sorts of services. In situations to make the blanket statement that taxpayers should subsidize these services, I don't know whether I necessarily agree with you or I've misunderstood you. I agree with you in part, but I don't know whether I'd go for the blanket statement that the public guardian and trustee should not charge any fees. I don't know whether you can comment on that.
Mr Young: Yes. The first thing that comes to mind is, should only the rich be able to afford these services? Because it's very expensive. You say, "Well, the government will step in when we've impoverished the account of the person enough." So you can say the person's allowed to have $1,000 in their bank account. They have $700. We're going to go through it, go through it, go through, go through, and they get out of the hospital and they've got $1,000 in there and they've got two months' rent due. What are you doing to that person?
That's the state we find most of our people in. You're making them pay for their own misfortune, their own ill health. That to me sounds relatively precedent-setting. Or you're saying that these services should only be indulged in when people are well-moneyed. So I worry about that on the basis of equity.
Mr Tilson: We're starting to debate it and I don't think that's the purpose of this, other than to comment that, how far should the state go in subsidizing? I gather, just so I'm clear, you're saying completely. Is that what you're saying?
Mr Young: Fairly far. On the basis of protecting human rights -- and I think that's what we're talking about here. When we talk about citizenship, rights and responsibilities of being a citizen, that hits me in the guts. That says something about my citizenship, being Canadian and what people have fought for.
Mr Bernard Grandmaître (Ottawa East): On rights advisers, you say on page 4, "We strongly support an independently funded system of rights advisers." You realize that the commission is being eliminated?
Mr Young: That's the whole reason for the act; I understand that. But you should not have these hearings without somebody saying: "We liked that. We thought that was right and logical and an obligation of society." If you were to say that you must only talk within the philosophy of this bill, then we would be doing a disservice to you. You should hear that some citizens are saying, "No, that's wrong." I'm sorry, I didn't mean to interrupt.
Mr Young: I was very happy to see the rights adviser walk in right after the doctor told my son that he was being restrained, because I knew that would happen after I was gone. To me, that helped secure his citizenship. Now, the person might have come in and could have been completely incompetent. She was not. But at least there was a glimmer that the door wouldn't be locked without him knowing what he was up against. That's, to me, basic.
Mr Young: No, but I'll give the ministry that easily because we were just formed last spring -- we may sound like somebody else -- in response to the mental health reform in Metropolitan Toronto. I was appointed to the steering committee and I said, "I need a base." You're not speaking much, Joyce, but Joyce knew she needed a base and we said, "Well, why don't we start pulling people together?" and that's what formed us.
Mrs Caplan: I met with members of your organization and we had a very good and productive meeting. I hope the government will listen to the concerns you have raised, but following Mr Tilson's answer when he said, "Trust us on cost recovery," which means user fees, given their attitude towards user fees, I'm not too optimistic.
I think the point you were making is that for those people, particularly who are on disability pension and have limited resources, to be forced into a heavy cost for services from the public guardian and trustee in and of itself is a form of abuse.
Mr Young: If you look at the economy of most mental health patients, 90% of them, their bank accounts are drained the first thing that happens, for many reasons. First of all, they're not earning, and then they need the social assistance. If you're looking for the trustee to make a profit off of it, they won't.
Mrs Caplan: That's what they talk about. They're not making profits on this. It's a question of how much the taxpayer should pay and how much they should be able to charge as a user fee for those getting the service.
Mr Marchese: Mr Young, I want to thank you for a number of points you've raised because I think that as a parent of a child who has particular problems, you bring important insights to the whole matter. Your sense that people with disabilities or people with psychiatric problems have rights too is something that we value. I've made note of the fact that you're saying these are people with rights and should have them either restored or regained where necessary, or as a general principle they should have them.
I want to cover two points if I have the time to quickly mention them. One is to agree with you, and a number of people have said this, that where you have a rights adviser, and this only applies under the Mental Health Act, they now have changed the law that says it means a person or a member of a category of persons designated by a psychiatric facility -- I want to ask Mr Tilson a quick question after I say this -- and you pointed out that this is a conflict of interest, that it's a problem. What you said is that they should be independent.
Mr Marchese: The previous law said much to that effect, and I don't need to read it, but it allowed for what you were saying. Mr Tilson, he's not the only person coming from an association who's said this. A number of other groups continue to say this. Do you have an opinion?
Mr Tilson: There's a clear debate, obviously, about the issue of conflict of interest. I'm saying, you tell some health care provider, a nurse or a doctor, that they've got a conflict of interest. They're there to provide a service to individuals. You say they've got a conflict of interest. Quite frankly, it's a disagreement on philosophy. Those people are there to provide a service and we don't believe they've got a conflict of interest.
The other quick question I wanted to ask is, under the Substitute Decisions Act, guardians now will be free to use restraints and monitoring devices without accountability. In the past they needed to have it as part of a guardianship plan. They now need not inform the court about this. Do you have an opinion on that?
Mr Young: That doesn't sound right. One more thing: I would agree with you that this should be looked at because those powers should not be used without accountability. But the doctor made an interesting point about neurosyphilis which, like schizophrenia, may not be considered a psychological disorder, but like schizophrenia, it affects how a person acts. Okay? It's exactly like schizophrenia in that it's a brain disorder chemically -- well, in this case it's a viral problem, it's an infectious problem. Schizophrenia is more an inherited one, but they're both a physical disorder of the brain.
I agree with him that the standard for mental illness should be no different than the standard for physical illness. I agree with him totally there, and he's right. If you're going to provide rights advisers for mental illness, you should provide them -- I'm sorry; I know I'm going over -- for physical illness as well.
We would like, first, to express our appreciation to you and the members of the committee for receiving our brief on Bill 19 and giving us this opportunity to speak with you on this important legislation. We will not use this valuable time to read our brief, but we do want to explain the approach we have decided to take in our submission and to provide the context for the four recommendations we are making to amend the proposed Health Care Consent Act, 1995.
We will conclude our oral presentation by relating some of the events leading up to the deaths of two of our clients in Toronto hospitals in the past 12 months, deaths which involved delays in and withholding of necessary treatment by health care practitioners related to the issue of consent to treatment. Although the circumstances were very different, these client deaths have left us as primary caregivers feeling frustrated and powerless with our responsibility to support our clients and families in accessing the health care system.
Although the new Health Care Consent Act, 1995, has addressed some of the problems which may have been contributory to one of these deaths, without the amendments we are proposing, the vulnerable population we support will remain at risk in receiving timely and necessary health care.
Reena is a community agency which provides a range of support services including primary care for adults with developmental handicaps and their families. Our brief includes detailed information about us. We are a non-profit agency established in 1973 and operate under several provincial statutes and regulations, and work closely with the developmental services branch of the Ministry of Community and Social Services; that is to say, we are a credible community agency, well known in serving this special population. I would go so far as to say that we are respected and appreciated by both our clients and colleagues in the sector for providing quality services.
The approach we have taken with our brief is focused and concrete as compared with general and philosophical. We have decided not to argue the issues involved in the repeal of the Advocacy Act, 1992, and we comment only briefly in support of the proposed amendment to one section of the Substitute Decisions Act, 1992. Our focus rather is on the proposed Health Care Consent Act, 1995, which will replace the Consent to Treatment Act, 1992.
With respect to the new Health Care Consent Act, 1995, we have restricted our discussion to only four sections, those sections of the act which we believe to be most critical from the perspective of our clients and families and for agencies like Reena that are the primary caregivers in the community.
In our brief, we have discussed our concerns with respect to these four sections and have proposed specific amendments which we believe would address them and at the same time clarify and strengthen the intent of the legislation. Our purpose in providing you with exact text is to ensure that we have been as clear as possible in our communication, since we believe the problems we have identified can be resolved by the suggested amendments.
Our first recommendation deals with the definition of "informed consent" under part II, subsection 10(2) of the act. Fundamental to the definition of "informed consent" is the requirement of understanding. It doesn't matter how well treatment procedures and consequences of having or not having treatment are described to the person if the person receiving the information does not understand what is being communicated.
To ensure the protection of vulnerable populations, we have proposed that part II, subsection 10(2), include a clause to follow clauses (a) and (b) which states "the person is able to understand the information about the proposed treatment, and appreciate the consequences of having or refusing the treatment or of making no decision."
The second recommendation deals with the same issue of understanding but within the section dealing with the test for capacity, part II, subsection 16(1). While part I, subsection 3(1), provides a definition of "capacity" which contains the key requirement of understanding treatment information, these elements of the definition are not contained in part II in sections 14, 15, 16 and 17, which deal with the test for capacity. We believe the intent of the act would be clarified and strengthened with respect to the fundamental issue of capacity to give consent by a rewording of subsection 16(1), part II, and this rewording can be found on page 1 of our brief, which is recommendation 2.
Our third recommendation concerns the process by which a health practitioner assesses the person's capacity to give consent under part II, clauses 9(1)(a) and 9(1)(b). In our experience, it is unrealistic to expect that a health practitioner in general has sufficient knowledge and experience in meeting the health care needs of persons with developmental handicaps to reach valid or reliable opinions about the capacity of these persons to consent to treatment without consulting those who have expertise in this field. Again, for the protection of vulnerable populations, and respecting the difficult role of the health practitioner in these situations, we are suggesting the wording seen in recommendation 3 on page 2 of our brief.
The last recommendation we wish to speak to is number 4. Unlike the first three, it involves some controversy. It deals with the current dilemma that we, as primary caregivers, face in having the responsibility for ensuring that our clients have access to and receive timely and necessary health care, yet having no authority in determining that this is provided.
The current health care treatment continuum does not include the primary caregiver in the community as part of the health care loop or team when they are not a family member. This means we have no more status than a stranger does when approaching a health care facility or a practitioner with a client in need of health care services. We are unable to authorize even the most basic health care procedure on behalf of our clients.
As well, critical client health care information we possess may be refused, disregarded or its validity challenged by health care practitioners when we are seeking health care services. Similarly, there is often a refusal of health care practitioners and facilities to exchange relevant discharge planning and treatment information with us due to legislation preventing release of patient information and right-to-privacy legislation.
We are asking that regulated community agencies which are the primary care providers of dependent populations be recognized within the new legislation as potential substitute decision-makers with respect to the provision of treatment, discharge planning and post-treatment care. We need to be included in the health care treatment loop if we are to support our clients and families effectively.
In conclusion, we would like to share with you some of the events which preceded the death of two of our clients this year in Toronto hospitals. We believe that the new Health Care Consent Act, 1995, with the amendments we are proposing, would have prevented the death of a vital and engaging young man and the premature ending of the life of an elderly person.
The need for legislation which protects the health care rights of vulnerable populations is emphasized by examining the circumstances surrounding the death of the elderly person. Let's call him John. His premature death occurred prior to the proclamation of the Consent to Treatment Act, 1992. John had been diagnosed with Down syndrome and Alzheimer disease. At the time of his death, he was in his late 60s and had been living with us for 13 years. His mobility was restricted, and he required a wheelchair.
Two months prior to his death, John received emergency medical treatment for a seizure and was returned to the group home the same day. His general health declined following his return home, and on the advice of his neurologist John was readmitted to hospital two weeks later and treated for dehydration. He was returned home but was refusing food and, on the advice of the neurologist, was readmitted to hospital four days later. John continued to refuse food in hospital, and a feeding tube was inserted. John responded by pulling the feeding tube out and had to be restrained.
A conference with the hospital followed to determine whether John should return to his Reena home or whether chronic care was required. It was decided that Reena would apply for chronic care. The attending physician stated that a second option might be to consider palliative care. When asked by Reena staff to explain, he indicated that, as John was pulling out the feeding tube, he had indicated he did not want it and perhaps we should do as he wished. It was his opinion that John's quality of life was poor and maintaining his condition might not be in his best interests. When Reena staff disagreed with this option, the physician indicated that he had been in contact with John's cousin, his only family member, who had little contact with him, and that the cousin had agreed with the palliative option.
Ultimately, it was decided that Reena staff would assist the hospital with John's care while chronic care was being arranged and by having John visit his group home for short stays. The week before John's death, Reena staff who were providing 24-hour support in the hospital described John as eating one meal per day reasonably well, although the feeding took one to two hours to accomplish. They indicated that he was at times alert, smiled and laughed, appeared to recognize Reena staff, looked at magazines and sat up in his wheelchair.
John developed a temperature, was not treated with antibiotics and died in hospital of pneumonia a few days later. Reena protested without success the withholding of the necessary and appropriate treatment, to which John's cousin had consented.
There is no question that John's life was ended prematurely by treatment being withheld and that he did not consent to this decision. It was a very disturbing event for our staff, who continued to see John as a person and who recognized that, while it was true his quality of life was not good, he continued to experience small pleasures and appreciate his life.
While there are those who have concerns that primary caregivers like ourselves may not act in the best interests of clients, we believe cases like this one demonstrate that there are greater risks in excluding those primary caregivers from participation in health care treatment decisions who have established relationships and an understanding and communication with incapable persons.
The circumstances of the second death are different in almost all respects. In this case a young person with developmental handicaps was living semi-independently in his own apartment in the community. While I had changed the name, we received permission yesterday from his parents, and you have already heard about this case today, so I will use Lonnie's name. His name was Lonnie Clemens.
Lonnie was employed, had good social skills, and was outgoing and energetic. He was in good health and in regular contact with his parents. During one of her regular visits to his apartment, his support worker noted that Lonnie was unwell and arranged for him to be seen by his physician. Lonnie's doctor diagnosed constipation. Normally, the prescribed treatment would be done at home, but in Lonnie's case, due to his extreme aversion to any medical procedure, it was recommended that this be done in the emergency department of the hospital. Lonnie's doctor prepared a letter to the hospital emergency department in the fact that Lonnie was developmentally handicapped. Lonnie's doctor also telephoned the hospital to let them know Lonnie was on his way.
It was a Friday evening when Lonnie, accompanied by his parents, was seen in the emergency department. The attending physician asked Lonnie for his consent for the mildly invasive procedure required to treat his constipation and relieve his discomfort. Lonnie refused. The physician indicated to his parents that he could not begin treatment without Lonnie's consent. His parents pointed out that Lonnie was developmentally handicapped and, with his irrational fear of medical procedures, was not capable of giving or refusing consent. They produced the letter from Lonnie's physician and requested that the attending physician consult the hospital's own records for confirmation since Lonnie had been treated there previously. The attending physician refused to accept the evidence of Lonnie's incapacity. Instead, Lonnie was admitted to the hospital for observation.
For the next two days, Lonnie's parents tried desperately to get Lonnie to consent to the procedure. He refused, even though he was now in considerable pain and discomfort. Reena also tried to intervene, at the request of the family, in support of their claim that Lonnie was not capable of refusing to give consent, but the hospital refused to listen to or consult with us.
Finally, on Monday morning, now in great distress and with a distended abdomen, Lonnie consented to the procedure. It was done but without result. A liquid purgative administered orally was then attempted, but as he was consuming the liquid too slowly, it was decided a feeding tube had to be inserted. Lonnie did not consent to this procedure and it was done by restraining him. During the procedure he gave assurance that if the restraints were removed, he would not pull the tube out. This was done but he immediately proceeded to remove the tube. The physician did not order further restraint or the reinsertion of the tube since he interpreted Lonnie's actions as indicating he did not consent to this procedure. No further treatment was given that day.
We believe Lonnie would be alive today if the principle of understanding contained in our first two recommendations had been applied, and if the attending physician and hospital had been willing to take into account the information as to Lonnie's handicap available from the family, Reena and another health care practitioner.
Finally, both deaths underscore the need for primary care agencies in the community serving vulnerable populations to be given status when they are seeking to meet the heath care needs of their clients. We need the authority to obtain treatment for our clients when necessary and we need to have access to health care treatment information in order to provide appropriate home care for the same reason nursing staff in hospitals have access to patient charts and medical records.
Mrs Boyd: Thank you very much. That was very painful for you, I could tell, and I think very painful for all of us to hear that obviously we don't yet have a situation that can protect vulnerable people in every case. Your recommendations are helpful. You understand that most of us tend to look at the other side where the caregiver may in fact have a conflict of interest that is really quite serious, and so it's very important for us to get that opposite point of view. I'm a little surprised that it wasn't possible for the hospital to deem this to be an emergency a little bit earlier than it did in the latter case, and that's really quite distressing for sure, because that's what the provision in the act is supposed to do.
I'm going to ask you whether you also know of other cases. We've had several different witnesses, both in these hearings and in the Bill 26 hearings, who have indicated knowledge of cases where developmentally or physically disabled people going to hospital with conditions unrelated to their disability have been encouraged, or their substitute decision-makers have been encouraged, to agree to do-not-resuscitate orders on their charts. I wonder if in your experience you have heard from the families you serve whether there has been pressure in that regard for any of your clients.
Mrs Boyd: It's a worry because one of the issues around substitute decision-making and being able to state ahead of time what your wishes are is that people who are in a terminal condition and want to give that instruction very often find themselves obstructed, and so it's very difficult to hear the opposite thing happening with otherwise very healthy people who have disabilities.
Mr Cole: I think one of the key points that we're making -- I don't want to lose sight of that and we tried to be very clear about that in our recommendations. The controversial nature of the request we are making is to be included in the health care loop. When we look at the legislation, Bill 19, or even when we look at the old legislation in terms of what it was trying to do, in my view it was trying to respond to a health care system that is a 1960s health care system.
Mr Cole: What I'm saying is if we are moving now into the year 2000 and we're in the 1990s -- we're moving out -- we should be moving away from looking at recommendations even with the legislation that's coming forward now, and I think it is improved from the other -- that meets the health care system of the late 1990s and going into the year 2000. I think the government is to be, in that respect, commended in its attempt now to make the delivery system both of health care and social services more streamlined, and to reduce the amount of bureaucracy, the amount of paperwork. I think we're drowning in this particular area in legislation in the health care and social services system as we are in other places.
What I'm saying is it does not make sense now at this point -- it never did make sense, but it certainly does not make sense today as we are moving further and further into community care -- to have two separate systems, the social service system and the health care system, which are not integrated. We have no status in the health care system. It is bizarre, given all of the regulations under which we operate as a primary care agency in the community. We are not out there operating on our own as an unregulated member of the private sector. We're very much an arm of government, and yet when it comes to the health care system we have no status at all.
In order that there are some protections for the client -- and I agree with the comment that Mr Tilson made a while ago. We don't want to take responsibility away from caregivers necessarily. I don't think there is a conflict, quite frankly, any more than there is a conflict with a medical practitioner or a nurse in providing assistance, that there's a conflict in a primary caregiver like Reena in supporting their clients and families in accessing the health care system. That's the point we're making. We have to be in the loop. Otherwise, these kinds of things will occur again.
Mrs Johns: I'd like to draw your attention to one of the sections of the act, and I don't want to get really technical. Under subsection 3(1) of the act, it basically says that, "A person is capable with respect to a treatment, admission to a care facility or a personal assistance plan if the person," one, "is able to understand the information..." and two, is "able to appreciate the reasonably foreseeable consequences of a decision...." That's a definition that goes throughout the act that basically talks about whether a person is capable or not.
Mrs Johns: What would have happened in the case of this new act, then, would be that the person would be seen to be incapable. A substitute decision-maker would have been set up. It probably would have been the parents, and this would have never happened. Is that not the case?
Mr Cole: It does, but it's strange to me that somehow or other -- the definition that you give is under the section of definitions and it's sufficient. It could be better, it could be said better, but it would be sufficient. But when we look at the legislation under the section on treatment -- and people often don't read all of those definitions. They'll go to looking at what in fact are they supposed to do when we look at the treatment provisions. When we go to the treatment provisions, there is no restatement of that definition as to what understanding means, or that understanding is the test that has to be used before consent can be made. What I'm saying is it needs to be included right there when the physician is attempting to determine whether consent is appropriate or not, and it's easy to include.
Ms Elisabeth Scarff: Thank you, Mr Chairman. I'm Elisabeth Scarff from the College of Nurses of Ontario, and presenting with me today is Barb LeBlanc from the Ontario Medical Association. We're here today speaking on behalf of the Ad Hoc Coalition, which is comprised of representatives from the following organizations: the Alzheimer Association of Ontario, the College of Nurses of Ontario, the College of Physicians and Surgeons of Ontario, the Ontario Association of Non-Profit Homes and Services for Seniors, the Ontario Friends of Schizophrenics, the Ontario Hospital Association, the Ontario Medical Association and the Ontario Nursing Home Association. So you can see we're a mix of providers, facilities and client groups.
The Ad Hoc Coalition has focused mainly on the new Health Care Consent Act, but members of the coalition will comment or will have already commented on various aspects of Bill 19 in their individual presentations throughout the hearings. I might add that other representatives from other members of the coalition are also here present and will be able to answer questions later too.
The Ad Hoc Coalition is supportive of the directions taken in Bill 19. As some of you may know, the coalition has significant concerns with the existing legislation, many of which we put before the justice committee in 1992. Since the proclamation of the laws in April of last year, we have seen many of our predictions borne out in the implementation phase. To be it simply, the existing laws don't work in practice. They are too complex and unwieldy and they interfere with the timely provision of care to people who are incapable of making decisions about their own care and treatment. As a result, many health care providers cannot meet the letter of the law.
The Ad Hoc Coalition would prefer to see legislation that works. In our view, this means legislation that recognizes the caring and supportive role of health care providers and families, while recognizing that a small number of people will want to question a finding of incapacity that is made against him or her, and that for these individuals we support the availability of the Consent and Capacity Board as an appeals tribunal.
In order to give the committee a better understanding of why we support the new Health Care Consent Act over its predecessor, perhaps we could provide a few examples of types of amendments that we view as positive.
The improvements in the definition section, including plan of treatment and course of treatment, serve to clarify government's legislative intent and to provide consistency in interpretation across disciplines and facilities.
Within the definition of treatment, we have found that moving the list of exclusions from the regulations into the body of the act will be helpful for health practitioners. The addition of clause (g), which introduces the notion of non-risky treatments, is very helpful.
It is also helpful in practice to have in legislation the idea that decisions about treatment include the withholding and withdrawal of treatment. The current law is unclear in this regard, and consequently providers, families and the Office of the Public Guardian and Trustee have struggled to know how to handle end-of-life decisions.
Similarly, the new Health Care Consent Act better reflects practice by acknowledging that minor variations to the same basic treatment are acceptable, as is the continuation of the treatment from one setting to another.
There are also a number of minor but useful amendments made in Bill 19 such as clarifications to the hierarchy of substitute decision-makers in regard to adoptive parents, in-laws, custodial versus non-custodial parents and legally separated spouses. The removal of the formal statement by family members attesting to their relationship with the incapable person is also useful. In addition, the Ad Hoc Coalition supports the changes made to the definition of emergency treatment under the bill, the ability of the Consent and Capacity Board to hear concerns from health care providers who do not believe that a substitute is acting in good faith and the clarification regarding protection from liability for health care practitioners who act in accordance with the act.
One of the significant areas of contention for some families and providers under the existing acts involves the difficulty in placing incapable persons into long-term-care facilities. The current Consent to Treatment Act indicates that admissions may be made only for the purposes of treatment. Tying admission to treatment has been extremely problematic, especially as many residents of long-term-care facilities do not require ongoing treatment in accordance with the act's definition of treatment. The solution adopted by the former government is both impractical and contrary to the principle that incapacity is situation- or issue-specific.
We believe that access to the hierarchy of substitutes is appropriate for admission decisions. We are therefore pleased that Bill 19 addresses in the Health Care Consent Act issues around consent to long-term-care facilities and does not require families to take the extraordinary step of making a guardianship application in order to make the necessary placement decisions. We are also pleased that it does not arbitrarily link treatment-specific incapacity to incapacity to make admission decisions.
Having spent some time on what we feel are improvements to the consent law, we would now like to turn for a moment to some of our concerns with the new Health Care Consent Act and to provide some rationale as to why some changes are needed.
Ms Barbara LeBlanc: We believe that it is appropriate to formally recognize daily routines as an important component of the health and wellbeing of an individual and to acknowledge that many otherwise incapable people are capable of expressing wishes with regard to their daily routines even when they are not necessarily capable of consenting to an entire treatment and care plan. We do not believe, though, that the way it is presented in Bill 19 completely meets those objectives.
If government's purpose in adding part IV of the new Health Care Consent Act was to clarify that activities of daily living are separate and distinct from treatment and to provide the opportunity for access to the hierarchy of substitute deciders, then the Ad Hoc Coalition supports the intent.
We'd suggest, however, that the act creates new language to describe things that are already well understood in practice as "activities of daily living," or ADLs. The Ad Hoc Coalition believes that it would be helpful for everyone if the language in the act reflected common parlance and asks that the act speak of "assistance with activities of daily living" rather than the existing "personal assistance services." We would define activities of daily living as "an activity that the person performs routinely and may include activities such as hygiene, dressing, ambulation, washing, grooming, elimination and positioning or other routine activities of daily living." This language is taken from the regulations in the existing act and has in fact been found to work well in practice.
As it's written, Bill 19 provides a framework for decisions about activities of daily living only in the context of a care facility. We believe that the location of the treatment or care should not be the determining factor in setting the rules that are used. Rather, the law should look to the decision at hand and be applied consistently. We believe that this is more than a philosophical consideration and will become increasingly important as more care is delivered in the community. It's important that we don't inadvertently create situations where the only way to obtain the necessary consent for an incapable person will be by means of placement in a health care facility.
In our original presentation on the Consent to Treatment Act, the Ad Hoc Coalition expressed some concerns regarding the fact that the provisions of the act were much more onerous where it came to mental illness and admissions for psychiatric treatment than for physical illness. Those same concerns hold today. Although the Health Care Consent Act addresses many of the legislative barriers to timely care for patients with physical illness, it doesn't do the same for mental illness. The Ad Hoc Coalition believes that mental illness should be treated in law the same as other diseases.
Just to conclude, the Ad Hoc Coalition commends the government for moving forward with amendments to the consent and substitute decisions acts. We believe that the key principles which should be incorporated into a consent law are generally found in the new Health Care Consent Act, and having had an opportunity to work with the existing laws for some months, we believe it's important for the Health Care Consent Act to provide certain things, and that includes clear legislative authority for substituted decision-making for all health care, regardless of whether it's treatment as defined under the act or at common law, activities of daily living and decisions regarding admission to care facilities.
"One of the amendments introduced in Bill 19 would permit a person to be admitted to a care facility without their consent or the consent of a substitute where there is a crisis. This provision has great potential for abuse. It's difficult to think of a situation where this type of admission would be required for the benefit of the individual. However, it is not hard to think of circumstances where a hospital may use this provision to transfer a patient who does not want to be admitted to a care facility."
Ms LeBlanc: I think the original Consent to Treatment Act in fact had that same provision. It did allow for admission over objection except in the instance of psychiatric admissions, so we don't really have anything tremendously different from the existing legislation.
Mrs Boyd: If I may, I think the issue they were raising was the area of the new act that talks about continuation of service including a transfer to another facility. That is what ARCH was most anxious about.
Ms Scarff: I don't think that we have read the changes in the act to say that the transfer provisions allow for moving over without consent. The transfer provisions allow that treatment decisions that have consent can follow through, which has been quite a problem when you already have a plan of treatment that's been consented to.
Mrs Boyd: I understand that's the intention. I understood them to be saying that their concern was that the clause about continuation might indicate that a transfer could occur without another consent. I may be wrong, but that was what I understood their concern to be.
Ms Deborah Wall-Armstrong: Debbie Wall-Armstrong, with the Ontario Nursing Home Association. One of the things I can tell you, though, for people going into our facilities, before that can even happen you have the intervention of the government placement coordination services, so there are still some other checks and balances to the system. I'm not sure what facility other than a long-term-care facility ARCH would be concerned with. But there are those checks and balances; the placement coordination services have their criteria that have to be looked at for individuals to suit their needs on it. So there is already a government check in place.
Mr Marchese: With respect to rights advisers, we've had a number of organizations that have come before this committee and talked about the need to continue to have rights advisers in order to protect individuals who may not have a family or where there might be abuse or where abuse could happen in general. I tend to believe the rights advisers are important as a way of protecting vulnerable individuals. Do you have an opinion on what this government is doing with respect to the elimination of the commission and rights advisers altogether?
Ms LeBlanc: Just perhaps to follow up on that, at our most recent meeting as a group we wanted the committee to have an understanding of what the rights advice provisions mean. There is a form that starts with the printing of the patient's full name and address, telephone number, the name and address of the facility, if any, the full name of the health care practitioner, and then asks the practitioner to read: "The Consent to Treatment Act provides a complete guide to making treatment decisions. It sets out rules that your health practitioner must follow. The goal of the act is to ensure that your wishes are respected and your rights protected. The act requires your health practitioner to give the following information: This is to inform you that at this time you have been found incapable of consenting to" whatever. "This means that someone will be making a decision about this treatment on your behalf in accordance with the Consent to Treatment Act.
"If you disagree with this finding, you are entitled to apply to the Consent and Capacity Review Board to review the finding that you are incapable. You are entitled to meet with a rights adviser. The rights adviser will explain to you what your rights are. He or she will help you to apply for a hearing to review the finding that you are incapable if that is what you want to do. The form you need to apply to the board is available from a rights adviser at the regional offices of the board and may be available from the facility where you are staying."
You then must sign, date, get the signature of the practitioner, full name of practitioner, decide whether or not a meeting is requested, and you must send by fax, if possible, a copy to the rights adviser as well as providing a copy to the allegedly incapable person.
Mr Tilson: I have a quick question with respect to the personal assistance plans and your recommendation of a change to the act. I found it an interesting one. I'd like you to elaborate a little bit on it. It had to do with activities of daily living versus assistance with activities of daily living, and I suppose someone better than I can deal with those wordings.
What did interest me in a suggested amendment which I'd like to hear more about is the location, particulary when we're getting into more care outside of facilities, and your suggestion that "the location of the treatment or care should not be the determining factor in setting the rules that are used. Rather, the law should look to the decision at hand and be applied consistently." A very simple statement; I understand it, but perhaps you could elaborate a little bit more on it.
Ms Scarff: Part IV of the Health Care Consent Act as it's presently proposed says that in the case where you need consent -- or you want to get consent, which is another issue -- to activities of daily living, you can refer to the substitute hierarchy if the person is not capable of consenting. But that's based on where the treatment is provided.
Our simple concern is, what's that got to do with why you would go to the substitute hierarchy to obtain consent? If you need access to consent and you want to have certainty about who is authorized to give that consent, the fact that you're in a care facility as defined in the act doesn't really have any relevance, because what happens to all those activities of daily living in other facilities?
Mrs Johns: We've heard a great deal about incapable persons and their right to have rights advice and to hear that they are incapable and to know that decision is being made about them. There's lots of talk about how we should do that, and since you represent a number of professional groups I'd like to get your vision on whether it should be demanded in legislation, put in regulations or whether it should be guidelines from the professions that you are representing.
Ms LeBlanc: As Elisabeth alluded to, as a coalition we haven't worked out a fulsome description of rights advice, but as a group we tend to agree that it ought not to be in the legislation, that it should be viewed as a matter for professional regulation judgement and that the various colleges could perhaps do something with it.
Mr Grandmaître: In your presentation you didn't address the practitioners who do the capacity assessments. What are your thoughts? Do you think that this is well addressed in the new legislation, that you have no qualms about it?
Mr Grandmaître: A lot of people, from certain groups anyway, have mentioned that they're quite concerned about the quality of the people who are doing these assessments and the lack of qualification in these people. I just wanted to know what your thoughts are because I think it's very important for people like you to make sure that those assessments are made by the right people, by qualified people, by trained people.
Ms LeBlanc: I guess the closest we come is that a number of the people on the Ad Hoc Coalition also sit on the government's interim advisory committee on substitute decisions, and that's an issue they've spent a fair bit of time on. Unfortunately, that's the extent that we can comment.
Ms Shelley Jamieson: Good afternoon. My name is Shelley Jamieson. I'm the executive director of the Ontario Nursing Home Association. That gives me the privilege of being the chief flag waver at events like this. With me are Carla Peppler and Deborah Wall-Armstrong.
Deborah Wall-Armstrong is a lawyer with her own practice in Barrie. She's a former board member of the Ontario Nursing Home Association and she's also the owner and manager of a nursing home. Carla Peppler works with me at the Ontario Nursing Home Association. She's the director of policy and resident care. Carla has a bachelor of nursing science, as well as a master's in public administration, and has been with our organization for 12 years. Both of these women have devoted a phenomenal amount of time over the past four years to understanding firstly the three acts which came previous to this one and now the Health Care Consent Act. As such, I'm sure that the committee will find their comments both informed and insightful.
By way of background, you should now that ONHA represents 302 nursing homes in Ontario, both for-profit and not-for-profit facilities. Our members have the massive responsibility, in my opinion, to care for 30,000 of Ontario's most frail and often vulnerable citizens. That's why the previous bills and this one are so important to us as an organization. We too take the safeguarding of residents' rights very seriously.
While we endorsed the intent of the previous acts, we became very concerned about some of the elements which may have worked on paper but in fact did not work on units in nursing homes. Of grave concern to us was that the very laws intended to protect residents were in fact increasing their vulnerability and complicating their lives. ONHA is extremely pleased with the changes proposed in the new Health Care Consent Act. The changes will allow for more responsive care environments because they will facilitate the provision of care in a much more timely fashion.
I wish to draw the committee's attention to the reference list on page 2 of our brief which shows the many elements of Bill 19 which ONHA supports. There's a whole list there. I'm not prepared to read them into the record; I know you'll be reading them. I think we should turn our attention to the rest of the presentation. We thank you really sincerely for the opportunity to be here today. My colleagues will now present what we feel are areas which could be considered for improvement to the bill. We sincerely hope that all parties will give these issues serious consideration.
Ms Deborah Wall-Armstrong: As Shelley has said, we are quite pleased with the act and we've listed about 21 changes on page 2 that we're particularly pleased with. I'd like just to highlight some of the most significant for us. They include the simplified consent process; the expanded definition of "plan of treatment"; the inclusion of withdrawal of treatment as part of the definition of "treatment"; the expanded list of substitutes and the non-custodial parent clarification; also the removal of the need for treatment in order to be admitted to a long-term care facility.
As I say, you can tell from that list that we're generally pleased with the bill. However, we do have a few areas of concern that Carla and I would like to point out, along with some suggested possible solutions.
Clause 19(2)(c) of the Health Care Consent Act outlines a test for best interests that substitutes must use, and the factors that should be taken into consideration when deciding what the incapable person's best interests are. This section is reproduced for you on page 3 of our submission.
Substitute decision-makers for nursing home residents must look to this test when making decisions on behalf of a resident, particularly when the decisions involve non-treatment, do-not-resuscitate orders or the withdrawal of treatment. Clause 19(2)(c) is written in such a way that it leaves a substitute to think that they should always choose to treat, which is inconsistent with changes made in this act to recognize that a refusal of consent includes withdrawal of consent. Substitutes are allowed, under subsection 19(1), to refuse consent. The inclusion in subsection 19(2) of such words to describe treatment as "likely to improve" or "prevent or reduce deterioration" imply that a treatment should be given. There are no words in the best-interests section that lead the substitute decision-maker to consider the benefits of non-treatment or withdrawal of treatment. Families oftentimes therefore feel that they should not choose the option of non-treatment or withdrawal of treatment, and there are times when non-treatment or withdrawal of treatment are in the incapable person's best interests.
Therefore, the best-interests test we feel should be balanced between the two extremes of treatment and non-treatment to fully integrate the concept that non-treatment or withdrawal of treatment are some of the choices for a substitute decider. On the bottom of page 3 and the top of page 4 in our paper, we suggest a rewording of this part of the legislation to achieve this, by inserting the concept of quality of life into the factors and specifically asking the substitute to consider whether the treatment is likely to prolong the incapable person's suffering as an additional factor in the best-interests test.
In addition, we have some concern on the definition of "emergency." Subsection 23(1) of the Health Care Consent Act, which has the definition, is reproduced on page 4 of the paper. We support the addition of the term "apparently" to the definition, but that change is not sufficient to deal with the problem we're experiencing with some medical emergencies. In practice, under the existing legislation, and it would be true under this as well then, the definition, rightly or wrongly, is being interpreted as applying only to physical suffering because of the inclusion of the phrase "bodily harm." Occasionally residents experience both physical and mental suffering, and they are at risk of sustaining serious physical and/or mental harm if not treated.
If I have a resident with an adverse drug reaction who has become delusional, thinks there's something crawling on them, they may become extremely agitated, they may start scratching at themselves, they may damage their skin, cause further infections to themselves. Recognizing that I'm dealing with a very frail population here that cannot take a lot of abuse, once restrained, they may not be in danger of direct physical harm, but they'll suffer the emotional effects of having to be restrained. If the problem is truly drug-related, there may be other brain damage to the individual if they're not immediately treated. We would ask that you consider the following amendment to address that concern, by putting "mental suffering" into the definition of "treatment." A suggested rewording would indicate, "For the purposes of this section and section 25, there is an emergency if the person for whom the treatment is proposed is apparently experiencing severe mental or physical suffering or is at risk, if the treatment is not administered promptly, of suffering seriously bodily harm."
Ms Peppler: I'd like to start with admission to a long-term-care facility. We are very pleased with removal of admission to a long-term-care facility for the purposes of treatment. This current approach in the Consent to Treatment Act has made consent to admission very problematic. The proposed section 38 requires that an evaluator determine whether or not a person is capable of consent to his or her admission to a long-term-care facility. The bill outlines who an evaluator might be, and that includes a nurse, a physician, a psychologist, occupational therapist, physio and a few others.
Currently, with placement coordination services, or PCS, they generally use nurses or social workers to do their assessments on all potential applicants to long-term-care facilities. In order to support the current process, we recommend that the regulations governing who an evaluator could be include social workers.
Also in the past, placement coordination services have had difficulty obtaining consents to admission, as various community-based agencies, by policy, did not allow their staff to complete capacity determinations for admission or obtain the consents. This has led to the current situation where we rely on physicians to test capacity and obtain the consent. In order to avoid this situation happening again, government must provide guidelines to all potential evaluators on the how-tos of capacity determination. This type of capacity determination will be a new skill for many, if not most, of these evaluators and therefore education will be required. If education does not occur, the system may revert to the current situation where only physicians will be asked to do the capacity determinations and obtain the consents.
I'd now like to turn to the personal assistance service plans. Most of the residents in our facilities have some degree of cognitive impairment and this limits their ability to make their own decisions. Our staff are very aware of this issue and try hard to encourage residents to make as many decisions for themselves as they possibly can. This, we believe, helps residents to maintain as much control over their environment and their care as possible. We assume that no matter how confused a resident may appear to be, he or she can indicate to us whether they want to be toileted or fed or bathed at any particular point in time. We believe that the capacity test for a specific personal activity is very low, therefore implying that most residents, except maybe those in a coma or those who are totally unable to communicate by any means, are capable of making decision about their specific personal activities.
The decisions involved in determining an actual personal assistance plan are at a much higher level than the determination of an actual personal assistance service. Section 4 of the Health Care Consent Act looks at capacity to make the plan. When developing a plan, considerations such as the timing of particular activities to support the resident's past practices and enhance their current strengths and abilities, the amount and type of intervention required by staff, the kinds of assistive devices that are required, the kind of communication, the kind of support required, all of these factors are taken into account when developing that care plan and each one requires a lot of judgement about the benefits and consequences of each option.
Unfortunately, most nursing home residents don't have the capacity to make this level of decision. So by focusing on the capacity for the plan instead of the specific activity, the rights of many of the residents to make their own decisions about daily aspects of care could be removed. We support resident autonomy. As a result, we recommend that section 4 deal with the capacity to make a decision about a specific activity rather than the plan as a whole. Because there are some residents, however, who will not be able to consent to an activity of daily living, we do recommend the inclusion of the concept of the plan with access to the hierarchy for consent purposes.
It's not clear to us why this section pertains only to residents of long-term-care facilities and not to persons in other health care sectors, such as chronic hospitals, acute care hospitals and the community, where personal assistance plans already exist.
Long-term-care facilities have detailed requirements in our Nursing Homes Act and in our program standards manual that outline what has to go into a plan of care and how it's developed and how families and residents should be participants in that process. Of all of the various health care settings, long-term-care facilities have the most rigid safeguards in place with respect to plans of care.
The inconsistency of location must be removed so that all persons and all personal assistance plans are treated the same. It should be the action and not the location that should be the determining factor here.
Another issue is the fact that the proposed act creates a new language to describe things which are commonly understood in practice as activities of daily living. The definition of "personal assistance service" included in the act is also not commonly used as the definition of "activity of daily living." As a result, this has led to much confusion about the intent of section 4.
To better support current practice and the public's general understanding of what we believe is the intent of this section, we recommend that the term "personal assistance service" be changed to "activity of daily living" and that the definition of "activity of daily living" that's currently included in the Consent to Treatment Act regs be used to define "activity of daily living" in this new act.
It's important to remember, however, that this new section will not assist care providers to give care to uncooperative residents. If a resident flatly refuses to participate in a care activity, having consent to a personal assistance plan or an activity of daily living plan will not help the staff complete the activity with the resident. We consider it abuse to force a resident to do something that they don't want to do. So the care issues associated with a psychogeriatric resident will not be resolved by Bill 19.
At times, we found it difficult to obtain a consent from a substitute decision-maker in specific circumstances and have therefore been unable to proceed with basic personal care and comfort measures, and this has put some residents at some degree of risk and discomfort. In order to facilities effective safe care and comfort, the addition of a provision which allows the health practitioner to provide the necessary assistance with activities of daily living to maintain resident comfort and dignity would be extremely advantageous to the resident. This type of provision would be similar to the emergency treatment provisions in section 2.
(4) That the ability of the health care practitioner to provide comfort and assistance with activities of daily living to incapable persons who do not have a substitute decision-maker readily available be added to facilitate the resident's comfort, dignity and wellbeing. I'll turn it back to Debbie.
Ms Wall-Armstrong: What you've heard are a few of the concerns we had with regard to the Health Care Consent Act, but we have some other concerns as well -- just a couple. I'd like to point out that on page 10 we point out that although we're supportive of the expansion of options available to the public guardian and trustee under the Substitute Decisions Act, we're concerned from our past experience that the threshold for action or investigation by the PGT hasn't changed.
The incidence of families not providing for residents' financial needs is increasing. Not only has this been found anecdotally by surveying nursing home staff, but a recent survey by the Ontario Residential Care Association also suggests that incidence of financial abuse of residents is on the rise. Not only do families not pay for the residents' accommodation, but the residents are not given any money to pay for such things as clothing, hairdressing, outings, tuck shop purchases, ironing, mending, personal wheelchair maintenance and drugs not covered by the ODB. To date, the public guardian and trustee will not investigate such allegations of abuse.
The PGT states that such cases do not result in serious adverse effects for the residents at nursing homes because nursing homes are not allowed to discharge a resident for non-payment of accommodation. Therefore, the residents' care needs will be met and they will not be at risk. They also state that they're not bill collectors for the long-term-care association.
We differ very strongly in what we feel the role is for the PGT here because we feel that the residents' quality of life is directly affected by not having access to funds to meet their needs and wishes. Although we may have an obligation to take care of their basic care needs, if they can't even access it to buy new clothing when they need it, have their hair done, it all has a psychological-social impact upon the residents themselves.
Nothing's more pathetic than to recognize you've got a resident here who has funds, they know they may have funds and I'm going up to my closet of used clothing that somebody has donated to our home to find them something to wear. It's pathetic. To see elderly, frail people left in that situation is sad, it's absolutely sad. I think that there's a role and responsibility that needs to be assumed here with it. The emotional impact of course is definitely there and I think that does affect their actual needs.
We'd urge the government to state, either in statute or by policy, that the public guardian and trustee has a role to investigate such cases. We believe that many of the cases can be resolved without an application for temporary guardianship.
We found in the past ourselves, and I've been involved in cases directly where we had the same problem with the use of federal funds coming in to a resident and the administrator of the home has contacted the federal government and said a family member is taking these moneys. The federal government has been quite prepared to direct the funds for certain federal pensions to the home as long as the home agrees to administer the funds without cost and be open to audit at any time.
Just the fact that the ability is there oftentimes stops family members from messing around with the funds. They do what they're supposed to do; they take care of the resident's needs. I think the same thing would be true if the public guardian and trustee's office had the authority to investigate and did at times investigate. Obviously, they'll need reasonable parameters within which to do that, but just the very threat that they could go in and investigate will probably in most cases take care of a lot of the problems and people will start to address that need.
Currently, we also need health care providers and the public to generally know what the criteria are, what the indicators are that the PGT uses for actual investigating. Sometimes the PGT's office gets calls that it shouldn't be getting and doen't get other calls it should because it's not well known, what do you investigate? I think health care providers and the public generally need to know that. I also think the repeal of the Advocacy Act probably heightens the need for that type of investigation to be carried out by the PGT. Without us having a lot of layering of legislation under the Advocacy Act, this is one way to ensure that this kind of concern or problem has some way of being dealt with.
We also have a little concern on the disclosure for personal information that we've outlined here. We strongly want to recommend that under -- it's actually subsection 60(3) of Bill 19, which we've incorrectly noted I think as subsection 90(3), which amends section 90 of the Substitute Decisions Act. There is a right to disclose some personal information. We have a concern on how that will actually take place. We understand that there are some specific situations that need to be addressed by this section, but it should be done in a manner that continues to reinforce an individual's right to privacy in regard to their medical information wherever possible. The section authorizes but does not mandate the release of the information, so we strongly feel there should be some consultation on the development of regulations under this section to address issues of individual privacy and reinforce guidelines that health care providers should use before releasing this information, and those guidelines need to be in place before that section of the act is actually proclaimed in force.
Mrs Johns: That's tough with only two minutes. At pages 3 and 4 of your presentation you're talking about 19(2)(c), and I admit I have a lot of trouble following what you're saying. You're basically saying in this section that we're promoting treatment, although when we talk about this, we're talking about what the incapable person's best interests are, the person who gives or refuses consent, so we talk about a pro or a con of that. We ask you to look at the person's beliefs, and then we go through these things as you suggest. You want us to put in "quality of life" and "prolong the incapable person's suffering." I have a lot of trouble with that in the fact that quality of life to me is very different from what it is to you or to someone else in this room. Can you talk to me about why that's so important to you and why you think those words should be in there?
Ms Peppler: We've had a number of families who are struggling with questions about advance directives, like whether or not CPR should be initiated, for example. When they're trying to make that decision, they go to the current Consent to Treatment Act. This is the best-interests test, and they feel when they read this that it's telling them they'd better choose CPR.
Ms Peppler: Even though they use quality of life from what they believe is the resident's perspective, they still come out feeling that the act is telling them to choose treatment over non-treatment or withdrawal of treatment.
Ms Wall-Armstrong: I think the issue is, subsection 19(1) specifically talks about withdrawal of treatment being part of the treatment aspect, but people often don't even look at that. They really look at the next part, which deals mainly with and the wording really speaks to treatment. It may be more of an educational process, but just because of the difficulty we've had in the past with it, we wanted to make sure that it was quite clear to everybody that non-treatment or the withdrawal of treatment was in fact part of a treatment to be considered.
Mrs Johns: One of the things I'm surprised about is your personal assistance plans and you suggesting that it should be done on a very micromanaged area, as opposed to on the plan. I can understand your focus on that, but what I'm concerned about is that we have to then get acceptance for toileting, we have to get acceptance for bathing, we have to get acceptance for every aspect in the day. You'll be spending more time doing paperwork than anything else that I can think of.
Ms Wall-Armstrong: What we're saying is we're quite content with the substitute making the decision about the overall care plan, because in most cases the resident can't do that; it's far too complex when you put all those factors in place. But it also gives the presumption that the health care provider no longer has to individually, when the incident comes up, whether it's feeding or toileting the individual, get their consent to it, that somehow they're supposed to make them do and follow this plan. We don't believe that in fact is true. We believe the individual still has to make that decision. If they're not going to consent to eat, then we may have to, if it gets to another emergency situation, treat them in some fashion with a feeding tube, but people aren't going to sit there and shove a spoon down their throat or try and pry their mouth open in order to shove food at them. It's still an individual decision and the capacity to make that decision is at a very low level.
Mrs Caplan: On page 13 you say, "We feel that there needs to be consultation on the development of regulations." Was the Ontario Nursing Home Association part of a consultation with the minister on the developing of this legislation? Did you meet with the minister to discuss the Consent to Treatment Act and any of the concerns, or with the Attorney General?
Mrs Caplan: Did you give them the advice that you gave in this brief during those consultations? Did they share with you what they were proposing? I'm just wondering why they didn't listen to any of the things that you suggested during the consultation.
Ms Wall-Armstrong: On those issues, we didn't have any extensive consultation about that particular section, but I think that staff were not opposed to the suggestion we're making that there be continued consultation. I think they recognize what concern we had.
Mrs Caplan: That's the concern that I have. Frankly, I was surprised at the questions from Mrs Johns, because you made a very powerful presentation about the number of individuals who are abandoned by their families or treated in a way which is contrary to the government's belief that all families act in the best interests of their loved ones. That really worries me. I must admit that I hadn't heard you say that in a while and I had kind of hoped that things had improved. They haven't?
Mrs Caplan: I guess I would just put a pitch in. I think the chill factor that you recommended, which is the kind of accountability balance, is something the government should consider, because nobody wants the public guardian and trustee to be able to walk in, but the opportunity for them to investigate where you've expressed a concern I think is a good idea.
Mrs Boyd: I think since the powers of attorney for property are also included in Bill 19, when we go through clause-by-clause one of the things we'll have to look at is a way in which we can ensure that someone who has the power of attorney for personal property and who is not fulfilling those obligations when someone is in a care facility -- that really worries me. I've always worried about what happens if the personal care decider is different from the power of attorney for property and they don't agree and they order this kind of treatment and then the money isn't there. That's always worried me.
I want to just speak a little bit on the quality of life thing. We've heard from many of the disabled groups how very worried they would be if quality of life were there and talking about suggestions about do-not-resuscitate orders, because of an assumption that somebody has that if somebody is disabled, they don't have a good quality of life. So while I agree with you that there needs to be a way that people understand that withdrawal or refusal of treatment is part of the consent, I can assure you that you would hear howls of outrage from the disabled community if you were to add this "quality of life" or "prolong the incapable person's suffering" to the act the way it is. I agree with you that we have to do better education around what that permission means, but the cases that have come forward are very good examples of why somebody's subjective decision about what somebody else's quality of life is is a very slippery slope.
Ms Wall-Armstrong: I must disagree in part when I heard the case earlier. I think the case really points out the fact that the health care person involved, and particularly in that young person's case, has not had a solid enough education about the new legislation. It speaks to the complication of the previous legislation, the three acts together. There was to be an educational process for health care providers that was shortened up dramatically before the legislation was passed and there's been a lot of confusion among health care providers about the legislation itself that still has not been straightened out. There's still a marked educational factor that needs to be brought forward for health care providers.
Ms Peppler: We also work with our staff to have them work with the families to have the families look at the values and beliefs of the resident and incorporate that into their decision-making. We try very hard to focus on that.
May I start by introducing ourselves? We are a brand-new organization that has been funded by the government in a variety of capacities, and as such we have three particular mandates. One of them is to provide legal services and advocacy for individuals living with HIV and AIDS, the second one is an education mandate and the third one is a law reform mandate.
Unfortunately, we became aware of these hearings late last week and therefore have not had adequate time to fully analyse the bill in detail. However, we have managed to put together a brief that addresses from our particular standpoint a variety of issues that affect the community we represent.
I would just draw your attention on the first page of our brief to our principles, which I will read quickly, that outline the fact that we believe in the rights of individuals to exercise control over their own medical treatment, to make decisions concerning their economic position, to be fully informed about all processes and to consent or withhold their consent in all matters. Therefore I would put forward to you that our interests are directly on point with this legislation.
At the risk of stating the obvious to the individuals present here today, I would say that people living with HIV and AIDS are almost always faced with issues of capacity, consent, health care decisions and the right of self-determination. As you may or not know, dementia is one of the major developments of this disease, and therefore a lot of people are found incapable of carrying on their affairs as the disease progresses.
Our submissions will cover three particular factors because of the short time period that we had to look at this. One is general considerations, which I would put forward to the committee they would look at very briefly; second is specific statutory considerations; and then some conclusions that we've come up with.
As our organization is a grass-roots organization, we are dealing with a marginal community of affected individuals. The definition of "family" therefore in the legislation, both the new legislation and the past legislation, is of extreme importance to us. The statistics would indicate that 80% of the individuals affected by our disease are gay males. However, there are intravenous drug users and single women, and that portion is increasing. Unfortunately, due to the marginal nature of the individuals we represent, they do not have the family support that a lot of the other groups you've spoken to have. Therefore, there is one particular individual, and we'll call them the preferred individual of choice, who is not represented in the definition of "family."
It was nice to see that when the legislation was changed in 1995 or came into being in 1995, they brought in a definition of "partner." However, I suggest to you that in a variety of circumstances, in almost a majority of circumstances, it is neither the family, nor is there a partner, who is making the decisions for these individuals; it is a friend, a colleague, someone who has nothing to do in terms of bloodline or of relationship with the individual on an intimate basis who is helping make these decisions. So I suggest to you that you expand the definition of "family."
Because these individuals are marginalized, they're vulnerable, and there is a particular interest on our part to have some form of advocacy of a third party. That does not mean millions of dollars need to be spent on an Advocacy Commission. I realize one of the reasons the Advocacy Act is being repealed is the cumbersome nature of it. However, we still believe in some form of advocacy for these individuals.
A third point we looked at is that it's difficult for us to form an opinion on this because the legislation as it stands has not been around very long. How do you judge the legislation that's been brought forward if you haven't had a chance to test it fully? That was just something we wanted to put forward to you.
A fourth issue that has been raised before but that we want to raise again is that it appears as though this legislation would decrease the accountability of the substitute decision-makers, in an effort to streamline the process. Combined with the increased definition of "family," and the individual nature of a lot of the people we represent, it looks as though this would be open to further abuse by individuals.
I can give you a specific example. Oftentimes when a family finds out that their loving son or daughter is sick with HIV, what ends up happening is that the family, the mother, the brother, swoops down upon them and takes over all of the control of their health care, of their finances, and basically shuts out of the picture distraught individuals who are their preferred individuals or their partners. You've got to take that into account in terms of the particular aspect we're looking at.
Removing the rights advice has probably been addressed by a number of people at this committee, but we would like to reiterate that declaring an individual incapable of managing their own affairs does not go far enough; you have to also inform them that they have the right to appeal. I probably need say no more than that. It is contained in our brief.
To reiterate what the previous party said about the plan of treatment, we feel that goes too far in terms of consent. We feel that informed consent should be on an activity-by-activity basis. This doesn't mean you have to have a piece of paper signed every time the person wants to go to the washroom. In general, the person is cognizant. They can still do the motor functions. They should be asked whether they want to eat, whether they want to go to the washroom.
We also came across a very interesting point in terms of plan of treatment which encompassed allowing for different settings. To us, this raised a political question in terms of the health care cutbacks and the fact that the pressure is on the doctors in the hospitals to get individuals out of the beds they are occupying and into other facilities. Is there, therefore, a conflict of interest to these individuals, getting them into, say, a palliative unit? We've had instances where individuals have been moved out of hospitals into palliative units when they wanted to go home and die rather than ending up in Riverdale Hospital. That is a definite problem as far as we see it.
We went through a number of statutory considerations, and they start on page 6. I probably can leave you to look at them yourselves, but I would just reiterate that we've outlined the definition of "family." Oftentimes in terms of gay males or intravenous drug users, the person doesn't necessarily live with their partner but they may have an intimate relationship. That should be an "and/or" rather than an "and."
The right of refusal of assessment: The right of refusal of the incapacity assessment is very important, the expression of wishes, the consent to treatment and what treatment entails. It would also seem that under section 12 there was -- I almost thought it was a typographical error, because at the end of the first line, if you read that correctly, "one health practitioner may," -- and if you skip down to clause (c) -- "ensure that a consent is obtained in accordance with this act...." I would suggest to the committee that it should be "shall" rather than "may," because I think you should definitely inform the individuals that has occurred.
Then I would draw your attention to the purpose of the act, on page 7 of our brief, which sets out the philosophical emphasis. If you're going to look at this legislation really to see whether it's providing for the individuals, doing what it's supposed to do, then I would draw your attention to clause (c). It says "to enhance the autonomy" of the individuals that it affects. It doesn't say "to support," it doesn't say "to aid," it says "to enhance." In our case in particular, people living with HIV and AIDS need that enhancement. They're vulnerable. They can't speak for themselves.
I don't know whether you're familiar with a nasty little progression of HIV and AIDS which is called CMV. It makes you unable to speak or make yourself aware, but you are fully cognizant of what's going on. Wouldn't that be a perfect, perfect scenario for somebody who has the right to make themselves known, and yet they've got a health care practitioner who says, "No, I think I know what's right for them." There's got to be some third-party advocacy in terms of what we're thinking.
(1) The rights which are expressed in Bill 19, such as the right to appeal an assessment, appear to be empty because there are no explicit mechanisms that direct a person who is in this compromised situation.
(2) The inherent makeup of the affected community and the fact that almost all of those living with HIV and AIDS will encounter health issues provide you with the increased credibility to our concerns over and above any general concerns of the system.
All of the affected community is going to come in contact with this. If you were aware of the number of people in our community who are scrambling to figure out what is a continuing power of attorney for personal care, what is a continuing power of attorney for finances, what is a living will. We deal with it every day. We've been open only seven weeks.
(3) The decreased level of accountability raises the spectre of increased abuse of those who are no longer able to advocate for themselves. We have seen this happen all too often in the past and were hoping that legislation would develop towards greater, not lesser, accountability for those in positions of power over vulnerable people.
(4) The amendments to these statutes are obviously a shift backwards to place power in the hands of those who traditionally held power over vulnerable people. Health concerns of the person and the development of individual rights and freedoms are not a priority for those who have proposed the bill if you look at it from the perspective of where it was coming from.
(5) Primarily, we view the amendments as an attack on the autonomy of the people in our affected communities, and they're contrary to the principles stated at the beginning in our mandate as a legal clinic serving the community.
That's a brief analysis of where we stand. We are the first of probably two or three other groups in the affected community who are going to be presenting to you, and so by way of introduction I suppose that would suffice and we open questions to any of you.
The Vice-Chair: Thank you, Mr Cowan. I appreciate the presentation. We're going to move to questions now. We'll be allotting about five minutes per caucus. The Liberal caucus I have down here as being first, but since none of them is here we'll turn to the NDP caucus and Ms Boyd.
Mrs Boyd: Thank you very much for your presentation. The issue you raise in terms of definition of "family" is an ongoing one and one which obviously we haven't been able to get a solution to that would have been amenable to your particular community. One of the things you should know is that when the news about the changes in this act first came out, there was a great deal of fear that the emphasis on the priority of family and swinging responsibility back to family, which was the way in which the press releases all read, led all of us to fear that those who had given a power of attorney to someone of their choice who was not a family member might lose that ability to choose.
That, of course, now that we've all seen the bill, is not the case, but what it does do is put the onus on people in your community in particular, at a time when they're feeling particularly vulnerable and anxious about themselves, to sign those powers of attorney, to understand what they mean and to put the conditions in in a way that is going to be binding. I know how difficult that is when someone has received a diagnosis that in effect is at best very serious and at worst life threatening, but that protection is there.
Mr Cowan: I suppose in terms of a disease, it hasn't been around as long as a variety of other ailments. However, I would indicate to all the members of the committee that the community is a lot more mobilized than it used to be and far too often -- and I'm not saying one in 10, I'm not saying two in 10, I'm saying probably three or four in 10 -- the family interferes in the wishes of the individual. That's why we're really adamant that they have to go forward with these.
On a more grass-roots level, we've had individuals who've actually taken duly executed powers of attorney to the banks and the banks have not recognized them. There's a problem just with the whole concept itself within the confines of the disease. Yes, they are moving forward, yes, they are aware that it's important to do that, but I don't think the safeguards built into this amended legislation are adequate.
Mrs Boyd: Part of the educational task is not just educating individuals themselves that they need to be signing these powers of attorney, but really is an education of the whole community that they take precedence over someone who comes and says, "Listen, I'm so-and-so's mother and therefore I have authority."
Mr Alex Brooks: I'd like to say something as well. The only way in which somebody who is very close to an individual, who has been involved in their decisions but might not fit the definition of "partner," the only opportunity that individual has is through the courts and through an application to override any of the other people who might be on the list.
For this particular community, that creates an adverse effect on the community in terms of security if they have no executed powers of attorney. If they have executed powers of attorney, yes, it's very easy to convince, but it puts a heavier onus on this group of people both in terms of their requirement to have all the legal documents in place, but also in terms of the survivors or the people who are helping them; it puts a greater onus on them in terms of their access to process.
That's what we're trying to get at, that there are still a number of people who do not, will not, and never will draw up powers of attorney, because they are expecting their loved ones who are their people around them to help them, and sometimes the legislation will not allow that to happen without a lengthy court process.
Mrs Caplan: I've had an opportunity to briefly take a look at your submission. I apologize that I wasn't here when you read it into the record. I was called to the phone. You raise concerns that have been raised by others as well. The one I would like to focus on is the one that you raised around the need for education and understanding of what this means. I held several forums in my riding under the old act, and I was amazed at how many people did not understand even the most basic of what exists today, or before the former legislation, as far as the ability to execute a power of attorney for their financial decisions, and of course the concept of a power of attorney for health decisions was a new one.
I believe the government has a responsibility to see that unbiased information is given to professionals who will have questions, to families, to consumers and to patients. I put consumers and patients together because you're a consumer today and tomorrow you may be a patient, someone who accesses it. So it's those three categories.
I believe that the Consent and Capacity Review Board, while it is a tribunal, has the information of how the law is being interpreted and also can offer education, as they do now, in a very limited way. What I find is that people don't like to hear the information directly from the government. Do you agree with that, and that we should be looking for a neutral body with expertise in this field which will give unbiased and impartial information on how the act is working and could also, then, seek advice from affected groups within those three categories?
Mr Brooks: That would be certainly preferable to having a government body try to pass on the information. The situations that we encounter where institutions generally are not even obeying properly executed powers of attorney, that's very distressing. I don't know. I don't know who you call. We just went in and said, "I'm sorry, you have to do this; otherwise you're breaking the law," and that usually helped out. I would like to see that, an independent body which can provide the consultations required for health care professionals to be up.
We had a situation where a health care professional thought that the definition of "partner" was the same as the old family law definition of "spouse." So the person who was claiming the right to make decisions was not actually recognized by the health care practitioner. It was a matter of actually telling the person that it was okay to accept instruction from this person because he is actually a partner.
Mrs Caplan: One of the things that came up in the forums was the issue of taking a power of attorney into a bank and having them say, "Well, it's not in our form, and we won't accept that." The message was very, very clear, and I think people have to hear this, and it's perhaps good to get it on the record here, and I know that the office of the public guardian and trustee will not mind if anybody phones their general number. If you're at the bank and they say, "We're not going to accept this," you say, "Let's phone this office." In fact, I think their phone number should be listed on the form in the kit; I know it's in the instruction book. They will say: "Yes, you must accept that. It is the law." So that's an easy way to get information on the acceptability of a duly executed power of attorney.
The issues that flow from that, particularly the ones under the Consent to Treatment Act and the enforcement of the directives of that power of attorney, are much more complex than I think anyone realizes, and you've just raised one of them. That's where education of not only the institutions but the providers in those institutions is extremely important. We heard from presenters who said we need time to do that. So I hope the government will hear that. This legislation does not give the mandate to anyone to provide that education. I hope they'll give that mandate to the Consent and Capacity Review Board because of the fact that they're doing some of it already and that it would be easy, with very limited resources, to expand some of that activity, because right now they deal primarily with providers and families.
Mr Cowan: Just to follow that up, across my desk about two weeks ago came a book about three quarters of an inch thick that was the handbook for physicians on the Consent to Treatment Act and the Substitute Decisions Act. I don't know whether you've seen it. I looked through it as a lawyer and thought there is no practitioner who is going to read this. It's got to be simplified. It's got to be streamlined. I agree with that in terms of where it's going, but there have to be some basic rights also that are maintained within the context of the legislation.
Mrs Johns: I just wanted to draw to your attention a section about the substitute decision-maker and see if this somewhat alleviated your problem or not -- the problem of someone who cares very much for a person who's not family being able to act for them in times when they need it. Under the substitute decision-making act, any person who is over 16 can apply to the Consent and Capacity Review Board to be able to be appointed as the representative of the person at any time after they become incapable, and in fact the incapable person can even apply to that board and say, "I wish to have this person appointed." Does that help in any way with the problem you're talking about, family overriding friends who may be a better appointee?
Mr Cowan: Marginally yes, but I would suggest to you that the preferred individual, as we're calling them today, shouldn't have to apply to any board to gain status, that it should come somewhere within that pecking order, so to speak. They should be allowed to have just general standing in terms of somebody who is interested in the care of the individual. That doesn't have to be a lifelong friend. We've got people who just have nobody except for one friend who wants to be around till the end. Oftentimes these aren't sophisticated individuals. They don't have a lot of money for legal representation. They don't know the process of applying to a capacity board. All they know is that their friend has expressed an interest that they would provide some direction as to their health care or their finances in their terminal days. Allowing them the status within the legislation itself is what we're going forward with.
Mr Clement: I just wanted to follow through on that. That's the area of your presentation I wanted to focus in on as well because you've said in your brief that the way to deal with that issue -- and there's no question this is the archetypal area where this is going to come up, and I'm sure it is a time of high emotion and anxiety, and then you've got perhaps family members who feel the people the afflicted person is choosing as his or her friends are exactly the people who got them into the mess in the first place. I can just imagine the types of arguments that are used in that case. I'm sure it's very difficult to sort out hierarchies and so on.
Getting to solutions, though, you say the solution is to expand the definition of "partner." That's what you say in the brief. I just want to probe that a bit because I'm fearful that if we expand the definition of "partner" too much it renders the definition meaningless in terms of an assisting tool in situations like this. Is there anything else that you considered that would get us to the goal where we want to get to on this?
Mr Brooks: I think the primary concern there is that we already don't really require all that much of families. We just want them to be there and to somehow have some of the similar structures of DNA, and that's all they are required to have. I think it's much more important for there to be some general system of vetting anybody who was going to be assuming the substitute decision role and that simply because the individual, through their life process, has been alienated from their family, or perhaps doesn't have family in this part of the world, or who has not established any kind of lifelong relationships that would fit the definition of "partner" -- that that person should be excluded from having someone who truly loves them who doesn't fit the definition of "partner" to be able to make those decisions for them. So it's both sides of it.
The level of accountability in this bill is severely lower than what we would prefer in terms of being able to -- you don't even have to make a statement that you have any connection with the individual if you're a family member. The whole idea I think is just to loosen that up to the point where you are not required to have a family if you don't have the luxury of family, and if you don't have the luxury of family you shouldn't have to go through a court process to get guardianship. You shouldn't have to go through a court process to get the ability to make that decision.
Mr Clement: I'm just wondering whether the solution is -- when you try to carve things out in legislation you have to paint with broad brush strokes, as you know, and it seems to me that this is a case where individual circumstances must, of necessity, be part of the solution. I'm wondering whether we're kind of missing the boat trying to fix the legislation when in fact we should be emphasizing a case-by-case understanding and sensitivity.
Mr Cowan: I think probably you're right in case by case. It's very easy for us to sit here in downtown Toronto where the prevalence of this disease or this condition is a lot higher than elsewhere, but put yourself into a smaller community where there is only one case and you don't have the support and you don't have the people who are aware of the disease.
I'd also like to raise the issue of families that come into the picture near the end and they have absolutely no knowledge whatsoever of the health concerns of the individual. I've seen it happen where families have come in and absolutely turned the process upside down because the preferred individual's rights as the spokesperson or the substitute decision-maker are not entrenched.
The Vice-Chair: The next presentation will be by Yvonne Osondu and Sasha Padron from the Ontario Midwifery Consumer Network. Good afternoon. You'll have 30 minutes for your presentation and you may want to allot some time at the end for some questions. You can begin any time.
Ms Yvonne Osondu: As you can see, I have my little baby with me. If he does get a little fussy I will just take him out and give him what he needs and come back. My name is Yvonne Osondu and this is Sasha Padron, and we are members of the Ontario Midwifery Consumer Network.
We're thankful for the opportunity to comment on Bill 19. We would like to discuss an important issue specific to the Consent to Treatment Act. We are here today on behalf of the membership of the Ontario Midwifery Consumer Network, also known as the OMCN, to share a deep concern around the exemption of the administration of eye prophylaxis ointment to the newborn from this act. This exemption drastically affects consumers of maternity and newborn care, but more dramatically consumers of midwifery care.
Our organization was founded in 1983 by a group of consumers and health care professionals who saw midwifery care as a safe, desirable, cost-effective option for child-bearing women and thus joined together to help towards the acceptance of midwifery into the health care system. Over the past decade we have represented thousands of families from Rainy River to Ottawa to Windsor.
Ms Sasha Padron: We've worked cooperatively with the governments over the past 12 years, with members of all political parties. We've been thrilled to find all-party support for the implementation of midwifery in Ontario. Our goal was realized on December 31, 1993, with the proclamation of the Regulated Health Professions Act and the Midwifery Act.
Along with participating in the implementation and standardization of midwifery care, we've worked hand in hand with midwives in the creation of their model of care and their scope of practice. We continue to be actively involved in the regulation of the profession by sitting on committees of the College of Midwives of Ontario, the Ministry of Health and the midwifery funding agency.
As consumers, we bring attention to any legislation which may change the model of care. The exemption of administering the eye prophylaxis ointment from the Consent to Treatment Act puts the midwife directly in conflict with her profession's philosophy of practice, with her model of care and with her client.
Prior to the proclamation of the Midwifery Act, midwives voluntarily informed their clients about procedures affecting their care. Both midwives and the families that chose to use their services felt that informed choice was an integral part of midwifery care and therefore integrated informed choice as one of the six critical principles of the model of midwifery care.
Through legislation and the regulation of midwifery care, midwives are now required to adhere to the model of care. By not providing informed choice, a midwife is in violation of the philosophy of midwifery care and the model of midwifery practice. As consumers, we seek out the services of midwives precisely because they respond to our expectations of the care we should receive during childbearing.
When we take on midwifery care, we make a commitment to actively participate in making decisions and choices affecting our care. The midwife is equally responsible for facilitating the passing on of all necessary information in order for us to do so. This means being well informed and scheduling long clinical visits in which she is able to thoroughly inform and respond to questions and concerns. Integral to this exchange is the establishment of a relationship based on trust and respect. Consequently, midwifery consumers feel extremely close to their caregivers as their care progresses. For a midwife to suddenly breach this loyalty by not getting consent from her client before administering the eye prophylaxis ointment, that would completely undermine her model of care.
We're here today to formally request that the administration of eye prophylaxis ointment to the newborn be included in the Consent to Treatment Act in order to preserve the Ontario model of midwifery care.
Mrs Boyd: I have to confess my ignorance here. I was not aware that this would be any different from the administration of any other kind of medication. Can you tell me what section of the act this is specifically taken out of?
Ms Osondu: It allows for the midwife and the client to continue dialogue, where the midwives say, "These are the kinds of things that I have to do to you as a client," or in a medical situation it would be known as "patient," of midwifery care. Throughout the nine and some months that you're with a midwife, it's always this dialogue of they giving you the information; you, the consumer, making the choice. Suddenly your baby's here, they're doing something to your baby and you cannot say, "No, I do not want it."
Ms Osondu: Well, 100% of babies are given the eye drops, whether they have the baby at home or in the hospital or in a clinic. The eye drops are to prevent infection that the baby may contact on its way through the birth canal. The two infections that are considered here are chlamydia and gonorrhoea.
Ms Osondu: I'll explain it to you this way. When you go to a midwife or a physician for prenatal care, there are a number of tests that a doctor would do routinely. One would be an ultrasound. In doing your health history, doctors would give you a reason why they would need to do an ultrasound, and so would midwives. Doctors do it routinely; midwives give the information to the women and they decide whether they want it or not, given the pros and cons of this technology and the reason for wanting this test. Based on the woman's history and the woman's knowledge of her health, she can then decide that she doesn't want to do this.
The same, we think, would go for the eye ointment. The woman knows her history; she could then decide whether or not this is something that her baby would be at risk for. However, because it's not included under the Consent to Treatment Act, a midwife doesn't even raise this as an issue for the woman. She just says, "I am going to administer this drug."
Mrs Boyd: But as with things like immunization, for example, that are required -- we require very few medical procedures, immunization being one of them and this being another because of the widespread danger to children who are at risk of complications -- do you really believe that women would be refusing this if they had the choice?
Ms Padron: What happens is that it doesn't even allow for that to occur. What we're concerned about is that by exempting it from the law, it's completely taking away the opportunity for informed choice in that scenario. All through your care, this is the type of dialogue that has been going on and it's an essential part of the care, that at every step of the way you have had open dialogue about every single procedure that is out there and available and that you can choose and decide on.
Now suddenly there is a procedure that this principle of informed choice is taken away from you so that the midwife is committed, has to perform that procedure without discussing it with the woman, without informing her about it, without giving her the opportunity to choose to do it or not to do it. That's our concern, that it's in direct conflict with what midwifery care is all about. In terms of requirement, from what we know there's been enough research to show us that it doesn't make sense that there isn't enough grounded reason for it to be a requirement, that there still is room for a patient or a client to make that choice on her own.
It was part of the Consent to Treatment Act that this would be a process that would happen, and then with the regulations under the previous government, they eliminated this as a treatment, so they said that this is not a treatment.
I think all three parties believe here, and government as a whole believes, that this is an issue of public health, that babies should have this ointment in their eyes and that really, if a parent chose not to do that, it would not be in the interests of the child. So we feel that it's an issue of public health, it's regulated under the HPPA that 1% silver nitrate solution has to go in the eyes of babies within one year --
Mrs Johns: Okay. My thing says that. We have talked with Dr Schabas, who is the public health representative with the government, and he still believes that this is a public health issue, that every child should have this within one hour. That's why it's come out of the consent act and has become part of the Public Health Act, because we believe that it's a very important aspect to a child's future and his or her development.
Ms Osondu: We're still saying that the choice should be with the parents. If a parent is fully aware of her medical history, then she should be given the choice whether or not she wants these drops administered to her baby. We're assuming, when you administer the eye drops, that the woman has an STD: gonorrhoea or chlamydia.
Ms Padron: Yes. I see exactly what you're saying, and it's not that we disagree that it's a public issue. It's just that there are various other things that are also really important, like the vitamin K injection that's given to babies and various other procedures that happen because there is an interest for mother and baby. That's not what we're arguing.
What we're feeling is that it's taking away that exchange of informed choice, where the parent is able to make that choice. Many will chose to do it, some may chose not to, but it's happened within the framework of informed choice.
Mr Parker: I just want to follow along on the same point. I think the difficulty that we have between us is this: As a government we rely on the advice of people who are experienced in the field, and the experience of the western world is that there are certain treatments that are vital in maintaining public health at various stages of a child's upbringing. It's beyond question whether it's good or bad or desirable or undesirable; it's highly desirable.
It's very cumbersome to have to explain that to each person, one by one by one, each time the issue arises, particularly at the time of birth. The clear experience is that it is very important and very valuable to administer this treatment within one hour of birth. There's not a lot of time to do a lot of talking at that point and try to explain this to a mother and get the consent and so on, and it's a treatment that is without risk.
That's what's motivating the provision in the statute here. I wonder how we can reconcile that against your wish that the mother in each case be given the chance to make the decision when you've only got an hour to work with and there's clear evidence that it's desirable. If we followed your approach, we'd run the risk that many mothers would be confused and wouldn't recognize the importance and would probably opt to say no, because that's the inclination when you're not really sure of yourself, and all these babies would be put at risk. Should we as legislators put newborn babies at that risk?
Ms Osondu: We're not at all suggesting that by giving women the information to make a choice would put their babies at risk. If a woman knows that she's got chlamydia or gonorrhoea, then she's not going to say, "No, I don't want you to put this ointment in my baby's eyes that will prevent an eye infection that could be damageable." But if a woman knows her sexual history and knows that she does not have these diseases, then it doesn't make sense for her to put the ointment in their eye, because it would be for what reason? We're just saying, please give the women the information so that they could make the choice that is best for them and their baby.
Mrs Caplan: This is not a new issue, and in fact there has not been a time I think in the last couple of decades -- and I think the ministry can confirm this, it has been standard practice over many, many years that first it was silver nitrate and now it's drops, erythromycin, and that has been standard practice because it is something that, as you said, is prophylactic, it protects babies. I believe, and as someone who gave birth to four children, that it is part of the standards of practice, whether it is the obstetrician or the family doctor or the midwife who's doing the delivery, to explain the benefits of this procedure and that that communication is extremely important so that the mother and the father, the family of the child, understand why this is being done. It is no risk.
The concern that I have if you were to change what has been the practice to allow this to become an issue of voluntary compliance is you would stigmatize those people who might be at risk for chlamydia or gonorrhoea and by that place children at risk, and that that's the reason why this is not a screening, this is a broad treatment, just as society has also chosen in other areas to demand vaccination before entry into school.
So this is an issue that I think midwives will continue to do an excellent role in communicating to their patients why it is important, but I do not support the option of being able to have a parent not consent on behalf of their child who would benefit from having this and where the mother, because of fear of being stigmatized, might choose to not have this if she would have to admit that those diseases were even possible.
I don't think you're going to find any support around this table for your request and I don't think it will interfere with the practice of midwifery in any way nor will it interfere with the need for the moms to be fully apprised of what is going on, but the reality is those babies are incapable of making the decision for themselves. What this legislation is about is who protects those who cannot make decisions for themselves, and society has decided that those prophylactic eyedrops are in the interests of the child and I think that is in the interests of society.
Ms Padron: Okay, thanks. I appreciate that very much and it's understandable in the context of the model of care that you're discussing because of the fact, exactly as you were saying, that there's very little time, there's very little opportunity at that stage of birth to explain fully the whole process. I can see where that comes from.
Where we're coming from is a very different model of care where, because the midwife spends so much time with the client, that situation does not happen. She actually does have plenty of time and plenty of opportunity to explain that procedure.
Mrs Caplan: Maybe I wasn't clear. Let me try again. I think there are many family doctors and obstetricians who take the time during the visits over the nine-month gestation to explain what is going to happen on birth. Mine did, and I was aware that the eyedrops were going to be given to protect my baby's eyes and that it was not an issue of whether I consented to that or not. It was a public health issue that that was in the best interests of the child. There was no risk whatever to the baby. I think that that is part of the standards of practice. If it's not being done, if that explanation is not being given until after the birth, then I think that there's a question of the conduct of the practitioner, whether it be an obstetrician, whether it be a family doctor or whether it be a midwife.
The issue here is, should the mother be able to decide not to have this treatment, and as a public health issue we have decided collectively on the advice of the chief medical officer of health -- and I say this to you as a former Minister of Health -- that it is in the public interest for those babies, for all babies, to have the eyedrops. I personally believe that it would stigmatize the moms if they felt that by saying, "Yes, you can have it," that now they were suggesting that they might be subject to those diseases and therefore babies would be deprived of that treatment and place them at risk.
I'm looking around the table and everyone is nodding. I think they agree that it's in the public interest for the babies to have the drops. It's not a question of interfering with your model of giving care; we all support that. We know midwives spend more time, but I think most moms are given that information long before the delivery. I hope they are. They should be.
Ms Osondu: It just seemed shortsighted to wait for a baby to be born, give them the eyedrops, whether or not that mother has got chlamydia or gonorrhoea, and find out only once the baby's born, rather than screening all women during pregnancy for chlamydia or gonorrhoea.
Mrs Johns: Mr Vice-Chair, while he's coming up I just wanted to put on record that the Ministry of Health is supplying the first of Mrs Caplan's requests, which is regarding reviews of incapacity, admission and substitute decision-makers. They're going to be passed out by the clerk.
Dr William Sullivan: I want to introduce myself. My name's William Sullivan and with me today is Dr Dan Fleming. And we have a paediatrician colleague who is busy with some emergency but he hopes to come. His name is Luigi Castagna.
The three of us are representing the Saint Joseph Moscati Toronto Catholic Doctors' Guild. Our guild was established in 1977 to promote Catholic values in health care by emphasizing in our work the fundamental dignity and interdependence of all humans regardless of life stage, illness or disability. The Toronto guild, one of three such guilds in Ontario, has approximately 400 members who are affiliated with both Catholic and public health care settings and involved in a wide variety of medical and dental specialties.
In general, we support the objectives of the act as outlined in section 1, but we wish to highlight for the committee three key issues not expressly addressed in the act, whose omission we judge to have negative practical and moral implications for health care in Ontario. Specifically, we draw the committee's attention to (1) the act's exclusion of direction on where health care professionals should now seek guidance and support for making responsible assessments of capacity, (2) the act's failure to clarify the meaning and legal status of the notion of "wishes" as previously expressed in a written document when a person was capable of expressing his or her wishes or general values regarding their health care, and (3) the act's omission of any attention to the vulnerability not only of patients but also those on the health care team who function as advocates for them.
The determination of capacity: The determination of a person's capacity to consent is a complex task requiring adequate preparation and support and a sensitivity to broader than medical concerns. This is particularly true in assessments of the capacity of children and individuals who have a cognitive, communicative or emotional impairment. It hardly needs to be pointed out that health professionals are rarely prepared for this complex task by their medical training.
Let us illustrate some of the complexities involved in assessing capacity. Consider the case involving the Clemens family that was discussed in the Legislature when Bill 19 was introduced. The Clemenses' son had a developmental disability, as well as recurring episodes of constipation. Unfortunately, he also had a tremendous fear of doctors and hospitals. In a visit to an emergency department of a hospital, he declined the proposed treatment for constipation. Under the Consent to Treatment Act, which had then just come into effect, the attending physician found the Clemenses' son capable of refusing treatment, despite his parents' vigorous insistence to the contrary. The treatment was withheld until a senior physician authorized it. By then it was too late; the young man had died of heart failure.
This case is often cited to support changes to the Consent to Treatment Act, which some critics have found to be too bureaucratic and rigid in its approach to procuring consent for treatment. The government has revised this legislation by including a provision that facilitates emergency treatments of persons with a disability -- in section 23 -- and excluding, among other things, the detailed guidelines on how health professionals should determine capacity to consent and the rights advice process.
The Clemens tragedy illustrates the dangers of a too literal and mechanical application of the guidelines for determining capacity contained in the Consent to Treatment Act without due consideration of other relevant factors: for instance, the input of family and an understanding of developmental disability. Still, it seems to us that guidelines of some sort are necessary to ensure that assessments of capacity made by health professionals are not purely arbitrary and can be evaluated objectively.
The proposed Health Care Consent Act is silent about the need for any guidelines to regulate determinations of capacity and so effectively leaves such determinations entirely to the judgement of health professionals. Moreover, the elimination of the rights advice process effectively frees health professionals from the obligation of informing patients of their rights in relation to a finding of incapacity. Both revisions conspire, we fear, to an undue reliance on the judgement of health professionals in an area for which they may not be prepared or have support.
Mrs Smith is an elderly woman with a chronic lung condition, but is otherwise in good health and living in a retirement home. She gets the flu that is going around the hospital, which worsens her chest condition leading to respiratory failure, such that she is unable to communicate her wishes as regards treatment. When she arrives in the emergency department, her attending physician, Dr Jones, finds a note in her chart dated 1993 specifying simply "Do not resuscitate." Dr Jones interprets this note to mean that Mrs Smith would never wish respiratory supports by mechanical means -- that is, a respirator -- regardless of the circumstances. As it stands, Dr Jones predicts that with medical treatment and respiratory support for a period of no more than 24 hours she would recover from this event. The question we will focus on is, what is the legal status of these wishes and does Mrs Smith's substitute decision-maker have any authority to override her previously expressed wishes?
Reading subsection 19(1) of the proposed Health Care Consent Act, Dr Jones wonders whether Mrs Smith's substitute decision-maker would contravene her prior expressed wishes in consenting to his proposed treatment; that is, a period of respiratory support. He is also aware that according to subsection 27(2), he is protected from liability should he decide to follow what he interprets to be Mrs Smith's wishes as expressed in the do-not-resuscitate order, even if it goes against her substitute decision-maker's judgement. What remains unclear, however, given his reading of section 24, which forbids him from administering an emergency treatment defined in section 23 that Mrs Smith has previously refused, is his legal status should he take the other course of action, namely complying with the decision of Mrs Smith's substitute decision-maker.
What we hope to highlight for the committee is the problematic nature of prior expressed wishes when one is faced with a medically nuanced circumstance. The matter is not only one of defining wishes but also of distinguishing between wishes as generally held expressions of personal values -- the intent, we take, of the act -- and wishes as regards specific medical means to treat a particular medical condition.
In the above case, neither Mrs Smith, her substitute decision-maker, nor Dr Jones ought to feel, we believe, legally constrained to employ or reject certain specific medical treatments. On the other hand, these decisions should be consistent with a reasonable interpretation of her generally held values as she sought to express them in the do-not-resuscitate order.
Protection of the integrity of health professionals: Our final suggestion is that the act needs to protect the integrity of health professionals as well as patients. The therapeutic relationship involves two parties. We need to ensure that the act's concern to respect the decisions of patients or substitutes about treatment or withdrawal of treatment is balanced by a concern to protect the moral integrity of health professionals who cannot on legitimate religious or philosophical grounds carry out those decisions. Often these questions about conscientious objection arise with respect not only to individual clinicians but also to vulnerable members within a health care team. The committee needs to examine more closely the implications of the proposed act for such teams.
Consider, for instance, the particular vulnerability to which surgical nurses can be exposed. Mrs Smith is a nurse who works in a teaching hospital that is on the forefront of research on surgical approaches to treating gynaecological cancers. In her role as a surgical nurse, she cares for women with life-threatening cancers who have been persuaded to consent to radical surgical procedures aimed at improving survival.
Mrs Smith is concerned, however, that because of the overriding and acute anxiety experienced by some of the women, their decision for surgery may have been made without full appreciation of the associated side-effects of this treatment. Hence, she is troubled by her own involvement in the treatment team's compliance with the patient's decision. She discovers, moreover, that within the team there is resistance to her questioning the patient's capacity to consent. In fact, she is often subject to censure for being a troublemaker who is undermining the efficiency of the team. Not wanting to risk losing her job, Mrs Smith learns to do her job and ignore her feelings of unease.
The multidisciplinary team is increasingly a reality in hospitals and other medical settings. Section 12 of the proposed Health Care Consent Act makes provisions for one health practitioner to propose a treatment plan and to determine capacity for consent on behalf of other practitioners involved in the plan, but does not address the question of what happens when there is disagreement within the treatment team about such determinations. More importantly, there's no provision in the act that protects the moral integrity of persons who may disagree on legitimate religious and philosophical grounds to being involved in treatment or withdrawal of treatment to which a patient or her substitute consents.
Conclusions and recommendations: We affirm the general thrust of the proposed Health Care Consent Act in that it strives to protect vulnerable individuals, to ensure that the treatment decisions of those who are capable of providing a consent are given due consideration and to provide for the necessary medical care of those who are incapable of providing such consent. However, we have highlighted three problematic areas in the formulation of the act to challenge this committee to reflect on the implications that may be unanticipated and, in our judgement, undesirable:
(1) A key practical issue in the medical setting is the complexity and effort involved in making responsible assessments of a patient's capacity for consent. Although the act retains the old legislation's definition of "capacity," it is silent on the more important issues of where health professionals should seek guidance and support for making responsible assessments of capacity, how to ensure consistent standards across health care settings, and what measures should be undertaken to inform patients and families of their rights of appeal. We are concerned that by failing to address these issues explicitly, the act places too much reliance on the judgements of individual clinicians in an area for which they may not have adequate preparation or support.
We recommend, therefore, that this act include a clear statement of the need for assessments of capacity to be accountable and to follow standard guidelines, if only to refer these considerations to the authority of regulated professional bodies.
(2) Another key practical issue, one that is becoming increasingly commonplace, is the legal status of written advance directives. We highlighted some concerns that health professionals have about being bound by wishes that are made in advance of the concrete circumstances that patients may encounter.
We recommend that you consider defining more clearly the meaning of "wishes" in the act to distinguish between generally held expressions of personal value and context-specific treatment decisions. We also encourage the committee to take an explicit stance on the legal implications of a physician or substitute decision-maker's refusal to follow the wishes, in the sense of context-specific treatment decisions, of the patient, made when capable, when there is a sound reason to believe that she would make a different decision if capable and informed of the particular context of the treatment.
A final practical issue is the need to protect the freedom of conscience of health professionals. We sought to highlight the vulnerability of certain members of the health care team in virtue of their solidarity with vulnerable patients. This is an issue that may have been considered beyond the scope of this legislation, but we suggest that the long-term moral health of our system depends upon a systematic openness to being challenged by those within the system who raise moral concerns. We recommend, therefore, that you consider extending your concern to protect vulnerable patients by including some protection clause for those health care workers who advocate on their behalf.
When we're talking about Mrs Smith here and her having probably an advance directive, which is what I think you're saying here, and it says "Do not resuscitate" on it, so the woman has decided that's what she wants to have happen, and nobody has any reason to believe that's not what she wants -- I think that's what you're saying -- are you suggesting that the substitute decision-maker or the health practitioner should be able to override her directive?
Dr Sullivan: I think the point was really philosophical and methodological, and the issue is that there is something inherently problematic about kind of general guidelines or specific guidelines that are made concerning medical matters in advance of any understanding of particular contexts wherein they may arise.
On the one hand, I guess the particular case illustrates that it may be a matter of interpreting a DNR order. The particular context I'm thinking of is one I'm very familiar with working in Sunnybrook hospital and having patients come into the emergency department with an order somewhere in the chart that's dated some time in the past that just says, "Do not resuscitate." The particular circumstance of the case was someone who has a reversible illness. When they made this directive, what they may have been wishing was not to be undergoing cardiopulmonary resuscitation -- people pounding on their chest -- when in fact the hope of survival was minimal. Perhaps that's one interpretation. The context may arise that this person needs a short period of respiratory support to overcome an acute illness. By definition, that is a form of cardiopulmonary resuscitation, providing respiratory support. So if you interpret her directive as something that is a medically specific treatment -- that is, "Never do I want a resuscitator applied for any amount of time" -- then to be consistent with that directive, you would not treat.
Mrs Johns: But the substitute decision-maker in that case would most likely know if the wishes have changed, for example, or if it was in a specific situation and that situation has changed, and be able to change the directive as a result of knowing what the true wishes of the person were.
Mrs Johns: So, Mrs Smith, as long as her substitute decision-maker was doing the job, would probably get the results she wanted to from them. She should also have her advance directive more clearly outlined, but the results would be the same and would be the acceptable results you want to have happen out of this bill.
Mrs Johns: No. I'll find you the section in the act, but the section in the act says explicitly if it's a new directive or if someone knows of something that has changed after the advance directive has been done, they have the ability to go forward and to make that decision.
Dr Sullivan: Okay, granted, but I guess the main kind of methodological point is that with the whole advent of advance directives, of people expressing wishes, it calls into play interpretation. First of all, to make that helpful for practitioners, they have to understand some of the nuanced conditions that may arise. I would suggest that if you want to help clarify the issue for practitioners, one thing you could try to do is define "wishes" as something more general. That way, it may not tie down people to very specific medical decisions that are very context-dependent.
Mrs Johns: There's a real danger there in the fact that if for some reason I don't want something to happen to me and I don't make that specific, then you can resuscitate me or something when I don't want to have any medical intrusion or whatever that might be. I think that you're walking a very fine line there. We have to respect people's wishes if we know them, and if they have changed, we have to respect the wishes that have come forward since then.
Mrs Caplan: Let me try to explore this further, because I think we're down an important path. It's my understanding of the legislation -- I ask the ministry to step in and correct me if I give any incorrect information, because this should be clear -- that if I were to write in a power of attorney that under no circumstances did I want to be resuscitated, that would have to be respected should my heart stop and I arrest. Right? All heads nodding? If I signed a power of attorney and it said that if I go into cardiac arrest I do not want to be resuscitated, that would have to be respected, if I was that clear.
If, on the other hand, my power of attorney said, and it's an expression of my values and my beliefs, that I want to be treated for cure, that would have to be respected: "I don't want to be resuscitated unless there is better than a 50-50 chance of cure. To my substitute, you have to follow that direction." It's now at their discretion. But it's at the substitute's discretion, and in consultation, as a partner with the team, if the individual or his substitute is a member of the care team, then that decision is made as to my wishes, that I only wish to be resuscitated if there is a better than 50-50 chance of cure.
Mrs Caplan: Let me just finish the third point. The third point is, if it's unclear. If the doctor or the substitute decision-maker wonders whether or not the decision is being made in my best interests and following my wishes according to any advance directive that may be there, it's my understanding that either one could go to the capacity board for a ruling as to whether or not my wishes were being followed, and you'd have an impartial judge looking at the situation. I think that's correct. Yes, I've got a nod from the ministry people. Those are the three scenarios.
Dr Sullivan: In this particular case, though, that's not very practical. The fact of the matter is that this woman is in respiratory failure and you have to decide pretty quickly whether you're going to supply a means to help or sustain ventilation.
Dr Sullivan: Okay, but it talks about "reasonable interpretation" of the advance directives. If my reasonable interpretation is that she does not want resuscitation and the substitute decision-maker is saying, "Well, yes, you should go ahead and do it," as I read the legislation, I would not be liable for prevailing.
Mrs Caplan: My view, as a lawmaker, is that you shouldn't try it, because if the substitute decision-maker says, "Resuscitate; that's not what her wishes were," you would not be protected from liability in that case.
Dr Sullivan: Right, okay. Just to back up a bit, I guess my point was not the particular legalities. That's not our field. It's the medical reality of making wishes in advance of medical circumstances and being unclear about what you're trying to express in those wishes. We agree that those wishes are important and we want them to be correctly interpreted. What we recommend is that you just be more clear that what is being expressed is something, in philosophical terms, a priori, some very general expression of one's values, and not something that is a posteriori, that is, concrete, very bound up with the circumstances that may arise.
Mrs Caplan: That's true, but if I say, "This is the person that I leave as a substitute decision-maker," their wishes have to be respected, and if they guess wrong as to what I want and they pull the plug, so be it. I trust that person and I would hope the medical practitioners would listen to him or her.
Mr Marchese: I have two questions and I want to change gears a bit to the other point that you made with respect to capacity. You weren't questioning the definition of "capacity"; you say it is silent on the more important issues of where health professionals should seek guidance and support for making a responsible assessment of capacity and how to ensure consistent standards. I'm not sure whether you have suggestions as to where they might go to do this. That is the one question. The other is, could you have consistent standards as they relate to the issue of capacity, and would that be practical, useful, or could it bring about some negative consequences here or there?
Dr Luigi Castagna: I'm speaking as a paediatrician, so my perspective is different from Dr Sullivan's. Generally, issues of resuscitation, of consent, have to do with persons who are in very good health and young, so the situation is quite different, but some of the things apply none the less.
I think what we are mostly concerned about as a Catholic guild of doctors is that there is some accountability among physicians in the process of decision-making and of establishing whether or not somebody is incapacitated.
These guidelines can be established at various levels. For example, they can be established at the level of hospital policy, and anyone who is declared incapacitated within an institution should meet certain criteria. The other level is part of the rules of professional conduct, professional ethics established by the college, so a physician is ethically obliged to follow certain guidelines. Finally, does legislation also have a role in reinforcing these guidelines in a very general way, maybe to set the climate in which physicians realize that this kind of decision is of great importance?
It's really a life-and-death decision sometimes. It's depriving somebody of his civil rights really. It should be taken with great care, and if the physician who is called upon to make a decision is not experienced, he should maybe defer it or consult with somebody else. Really it's a question of, would you think that legislation addressing these issues would establish a climate in which these issues are taken more in consideration than they are with the present proposal?
Mrs Boyd: It seems to me that in your presentation your real issue is around how to deal, first of all, with how to determine whether a person has the capacity to make the decision, if they don't, then where the decision lies, and that it's almost always around the very ultimate kind of situation of life or death. Certainly the situations you've presented are that way.
It seems to me that the factor of allowing, by law, a patient now to have a role in making a forward decision is all it's exercising here. Doctors have always made these decisions and they've always made them according to their own moral precepts, whether to palliate or whether to treat, whether to resuscitate or whether not to. The whole purpose of this legislation is to say that doctors don't make those decisions alone any more; they make them with the patient, and if the patient is capable, the patient can do that directly. If the patient is not capable, then an advance directive or a substitute decision-maker makes that decision. So I think that part of the problem is really the moral dilemma that doctors face every day and always have and that this is just a complicating factor to it.
Our problem is that we as consumers of health care probably are not clear enough in giving our advance directives of what we want. In the case of your chronic lung condition, for example, if this is chronic obstructive lung disease and this person has been in respiratory failure before and has said, "I wish you didn't resuscitate me; put an order on and don't resuscitate me the next time," I think that's a pretty strong message, whether the flu caused the respiratory failure or whether they went into a respiratory arrest because of the low ceiling. Really, basically that's your problem.
In the cancer situation, for example, a member of the team doesn't believe in the drastic treatment and would prefer to see palliative treatment, but the team is moving ahead with the thing and apparently has -- it seems to me that what you're bringing to us is a very real example of the dilemma of helping people to express their needs. For example, a do-not-resuscitate order should probably say, "Do not resuscitate if this condition is irreversible, but if the condition is reversible, resuscitate to the point of living on a machine," or something. We should help people to be more precise and that's the educational factor that comes into play.
The Vice-Chair: Our next presenter will be Laurie Hall from A-WAY Express. Good afternoon, Ms Hall. You'll have 30 minutes for your presentation and you may want to leave some time for questions at the end. You can begin any time.
Ms Laurie Hall: I'd like to thank the members of the committee first for staying late today. I'm sure it's been a long day. I was booked in at 5 o'clock last night and couldn't seem to get into the building. You were probably stuck inside here.
Ms Hall: Just by way of introduction again, my name is Laurie Hall. I'm the executive director of A-WAY Express. A-WAY is a courier company serving the Metropolitan Toronto area that is run by psychiatric survivors and employs exclusively psychiatric survivors.
I'm speaking today on behalf of the members and employees of A-WAY Express and as a psychiatric survivor myself to express our grave concerns about this Bill 19 that will, among other things, repeal the Advocacy Act. I'd first like to give you an overview of who we are at A-WAY Express, how we came about and why we believe so strongly in the need for advocacy, both personal and systemic.
A-WAY Express is a competitive courier company serving the Metropolitan Toronto area. Our employees are all psychiatric survivors, that is, we have all been involved as consumers in the mental health system in some way and have survived to tell the story: We have all been vulnerable persons and have experienced the system as a vulnerable person.
A-WAY has been in operation for over nine years now, first opening its doors in 1987. We operate with some operating dollars from the Ministry of Health and generate enough income from the courier business of our 800 customer accounts to employ up to 45 couriers at any given time. In total, we employ approximately 55 to 60 people, all of whom are psychiatric survivors and many of whom were written off by the mental health system as permanently unemployable.
There have historically been a complete lack of meaningful employment opportunities available to psychiatric survivors. Traditional employment options for us have been hugely ineffective -- programs such as job training programs that graduate a person to no real job opportunities, usually just to another training program; vocational rehabilitation, which was originally based on a model developed to retrain recently physically disabled workers. This has also proven to be of little value to our community. Finally, the most infamous of all, sheltered workshops, otherwise known as putting plastic spoons in bags for 10 cents an hour. When I was in the Whitby Psychiatric Hospital as a teenager, this was professionally referred to as industrial therapy -- not much opportunity for advancement.
In the mid-1980s, before A-WAY began, a group of people came together who acknowledge the fact that the mental health system sometimes was leaving people damaged, that people were leaving institutions, sometimes after many years, with no employable skills, no sense of self-worth or dignity, no sense of help for anything more than a rooming house and a disability cheque if they were lucky. There was a need for something that helped people get back their dignity and self-esteem, something that allowed them an opportunity to work and be paid, to get out of the poverty trap they felt doomed to. Nothing existed that could offer that, so they began to develop something new. They began to build A-WAY on the principles that the Advocacy Act also laid out for us: to develop the skills of the community and foster the growth of resources that already existed, to ensure consumer participation and governance, to emphasize education and training both for each other and society at large. These are the principles on which A-WAY was founded.
The psychiatric survivor community traditionally has had an unemployment rate of 85% to 95%. This rate is unheard of in any other community in Canada and probably the world. The relationship between health and employment has been well-established and is a widely accepted fact, yet with an unemployment rate this high, it is only in the last several years that opportunities for real work for real money have been an option for a small number of psychiatric survivors in Ontario.
As well as the obvious health benefits, the parallel savings in health costs that have been documented are enormous. For employees at A-WAY, employment has meant a decrease in the number of days in hospital; for some, a decreased reliance on medication; for most, a decreased reliance on outpatient psychiatric care and crisis services. The money put in to support these business has translated directly into huge savings to the traditional health care system.
A-WAY is recognized in Ontario, and indeed in many parts of the world, as a leader in our ability to not only create employment opportunities for psychiatric survivors but to run a successful business that is driven and directed by the employees themselves. Currently, A-WAY is only one of several different small businesses across Ontario that are run by and for psychiatric survivors.
More and more people are being released from psychiatric institutions and are being placed back into the community. This government has acknowledged the need to cut institutional spending, to provide the supports in the community and the need to find solutions that work and that are cost-effective. A-WAY is such an example.
From the very beginning, A-WAY was successful because the people who needed employment developed how A-WAY would be set up, how it would run and who would be involved. Non-consumers were involved in the beginning, people with expertise in small business or courier services in particular, who had particular skills to offer yet were committed to the concept of self-help or self-advocacy. A-WAY has developed to the point of being 100% consumer- or survivor-run and operated. This is the key for us and this is the differentiating factor that separates us from other similar models currently being set up by some institutions.
In recent years, successful big businesses have come to realize the benefits of both consumer input and input from front-line employees. This has resulted in improved products, streamlined and improved efficiency in production and an increased commitment to the company due to opportunities for participation by all employees. This concept extends to all areas of society. People, both individuals and communities, know what works best for them. They know better than even the best-intentioned professional what has worked for them in the past and what they need in present circumstances.
Survivor businesses such as A-WAY Express are successful in helping people rebuild their lives because they offer people an opportunity to think for themselves, to learn the skills that they need on the job, taught by their peers. They become involved not only in the day-to-day running of a business but in the long-range planning and governance of that business. The needs of the community and the development of that community are balanced with the goals of meeting the needs of the customer in a competitive environment. People have an opportunity to find their voice and to use it to help themselves and others in a productive, empowering way. We feel this is the goal of true advocacy.
In December 1992 we saw the highlight of many years of work of many different vulnerable peoples come together in the passing of the Advocacy Act and the commission it was to set up. This commission would have a mandate to provide both individual and systemic advocacy, to take a community development approach, to emphasize education and training, and to ensure consumer participation. For the first time in many, many years of community building and networking, we saw a commission set up that was composed of users of the systems, that was composed of vulnerable people, of people who had experienced the frustration and the difficulties of accessing services that are sometimes outdated, inaccessible, ineffective or inadequate. Many of the same tools that were so successful at A-WAY were to be incorporated into the work of this commission, with some of the same goals.
We know that people are most healthy when they have some feeling of control over their lives. Psychiatric consumers often emerge from the mental health system damaged and institutionalized, in that they have very little, if any, control over their lives, in some cases not for many, many years. We are told when to get up, when to eat, when and what medications and treatment to take or submit to. Eventually, if we are lucky and if we survive -- and some do not -- we emerge and are put into the community to live out our lives. We have had our choices taken away for so long, we often can't remember what it is like to make our own decisions. We are so accustomed to having other people make decisions for us that it often takes a long time, with education and training and assistance from people who have been there, to begin to make decisions and advocate on our own behalf.
Becoming employed at A-WAY is the first step for many people in that situation. It works because it was set up and is driven by people who have shared that experience. Similarly, we know the Advocacy Commission would have worked, because the people who know what it is to be a vulnerable person in this society were involved in the process, were involved in the decision-making and were involved in its governance. Most important of all, the commission was committed to ensuring that communities continued to develop and continued to empower each other.
The commission began to develop links across different disability groups, to allow us to begin to discover we had many similar issues and could work together for many of the same goals. It is difficult to work in isolation, with so many people who could benefit and no means or opportunity to get the tools or the message across. We saw the Advocacy Commission as the beginning of the links that were needed.
I have outlined the components of A-WAY that have enabled people to begin to successfully rebuild their lives. These same components are incorporated into other survivor businesses and many grass-roots organizations across the province. They are incorporated because they work, because they are necessary components of a process that allows people to grow and to find their own voice. These same components, we believe, must be the foundation of any proposed legislation directed at true advocacy.
In an ideal world, we would see you tossing out this bill, the Advocacy Act would remain as it is and the Advocacy Commission could be permitted to continue the work it barely had an opportunity to begin. In light of the odds that this will happen, at the very least, I urge you to consider the Advocacy Commission's alternative recommendation, one that was presented to you on Tuesday afternoon: to fund a non-profit, charitable corporation, one that will incorporate these elements, elements that have allowed A-WAY and many other grass-roots disability groups to be successful. Their proposal would see an organization that would foster community development, education and training and systemic advocacy. It would be governed by people with disabilities and would take a cross-disability approach.
We cannot assume that all people have a voice; many do not and many never will. However, many could develop that voice with the proper tools and education and time. Many could learn to advocate on others' behalf, with the proper tools, education and time. Most important of all, we could contribute to changes in the system that helped to cause the damage and silencing in the first place, with the proper tools, education and time. We need this voice to be able to claim back our lives, to begin to recover and to participate once again in society. Too many people have not survived and too many people will never have the opportunity to recover.
To us, a system that incorporates the items just outlined would be the most efficient and cost-effective system. The cost of the alternatives -- to do nothing or to allow things to slide along as they have been -- has been enormous. To us, it's just a matter of common sense.
Mrs Caplan: Thank you very much. I appreciate your presentation. Your proposal, however, is that they not repeal the advocacy legislation. I think that realistically, since that was their campaign platform, they're going to do that. If you wanted to focus on some of the ways the existing legislation could be strengthened, so that not all rights advice and advocacy was lost, I think that might be helpful.
For example, the consent legislation right now really creates a situation where under the Mental Health Act, only in psychiatric facilities are patients guaranteed that they will be told that they have been found incapable and that they do have a right to appeal to the consent board. Would you like to see the legislation also require or expand the mandate -- well, first require that all patients be told that they are incapable and that they have a right? That's the first question. Second, the PPAO has been I think very successful over the last almost 20 years now acting as rights advisers and advocates in the psychiatric facilities run by the province. Would you support having their mandate expanded so that they would be the ones who did the training of rights advisers in community hospitals and the community-based organizations, to allow access to rights advisers? Is that a reasonable alternative to nothing?
Ms Hall: Yes, I think so. I think they have been very successful in the provincial psychiatric hospitals. I think there is a lot of concern that there will not now be those rights advisers in the general hospitals, where a large population of people suffering mental health problems -- that's their main connection. There is still a large population of people, though, even in provincial hospitals, who don't have the knowledge or the awareness or the self-esteem to approach and make an appeal. That's a very terrifying thing.
Mrs Caplan: I think this legislation could be improved to ensure that all providers had an obligation to inform individuals that they have been found incapable and that they have a right to appeal. I also think the mandate could be and should be given to the PPAO to both train rights advisers and certify for community hospitals. I think that's something they are the best ones to do; I agree with you.
Further, I think there is another need that's out there and that the dismantling of the existing Advocacy Commission, which was an opportunity for people to come together and to meet and to discuss these issues -- what I would propose and I would like your response to is that you would have advisory committees to the consent board or the consent office, or whatever you want to call it, that could meet: a consumer-patient committee, a family committee and a provider committee. This is the Australian model. They could meet regularly individually, as well as perhaps a couple of times annually together, because often they have different viewpoints. If you had that basis, you'd also have a place where people could call to get advice. Is that a reasonable way? We know they're not going to not repeal the act.
Mrs Caplan: The concern I have is that while the minister has said here that she's prepared to consider new legislation, the consultation that is taking place clearly states that there will be no new legislation. So we have a conflict there that I'm hoping can be clarified during clause-by-clause. The minister did make a misstatement here at the beginning of these hearings, but groups that are part of that consultation are being told in writing that there's no hope for any legislation, which means this is the only opportunity we're going to have to put something in here that will respond to those clearly identified needs that you've articulated so well.
Mr Marchese: Thank you, Ms Hall, for your presentation. I guess the frustration I have is that there have been a number of people like yourself who have come to talk about the need for advocacy, support for the Advocacy Commission, support for rights advisers, and it seems like those voices don't appear to be very strong or don't appear to be having much influence on the government, as I can tell. It's sad, because what you have are vulnerable people who, once again, will not be heard or whose voices will be lost, which is what we tried to do through the Advocacy Commission.
It's pretty hard being here -- and hard being there -- talking about the need for it and why it was created: to give a voice and to give rights to people who otherwise often are excluded, who often may not have a voice or who often lose it for a variety of different reasons. All I can say is I despair.
The Ontario Nursing Home Association came today, and one of the things they support as well is the elimination of the Advocacy Act. So you have a number of people like that who work against individuals like yourself. So I'm not quite sure. You have a government that says, "No, we don't need it," you have other institutions like this saying, "We support the elimination of the Advocacy Act," and then you're on your own with your voice and with a few voices here saying, "We really need to have it," for the protections that one speaks about.
I know Mr Reville came in front of this committee and talked about having a $3-million proposal for a non-profit corporation that would do community development, training and education, and do some systemic kind of work, which would be the minimum, I think, that they could do. I'm not even sure this government is willing to consider such a proposal that would take care of the concerns you're raising.
Mrs Boyd: I think one of the good pieces of news is that your voice is now on the record. You've given a very eloquent description of what advocacy can do. It can never be lost, because it will be on Hansard and it's there. We can always use it to help people to know that there have been groups that have been able to do this. I think if the government does not heed the need for some form of advocacy development mechanism, the communities themselves, led by people like you, will do it.
Ms Hall: Thank you very much. It was very important to our community to have this opportunity to make our concerns known today. The survivor community, among other vulnerable communities, right now is really reeling. I've never seen such despair in the community as I have in the last six months. People are frightened of losing their pensions, they're frightened of losing their housing, they're frightened of losing everything all at once. It's just like the punches come one after another after another. People are really frightened.
There was even some serious discussion about whether or not we should appear at these hearings. Wasn't it better still to continue to hide and not draw attention to ourselves? But we're here anyway and we will continue to survive. I hope this government will see the need to support us.
Mr Doyle: You mention in your brief, "From the very beginning, A-WAY was successful because the people who needed employment developed how A-WAY would be set up, how it would run and who would be involved." Then you go on to say: "A-WAY has evolved to the point of being 100% consumer- or survivor-run and operated. This is key for us and is the differentiating factor that separates us from other similar models currently being set up by some institutions." So basically, you set yourself up as an organization and have operated that way for approximately nine years.
Mr Doyle: That's precisely the point that we're trying to make: You did this without an Advocacy Act. You did this on your own. You didn't need legislation of any kind or an act of Parliament to do this. This is basically all that we're saying that we're trying to do.
Ms Hall: I think our dismay is that after nine years there are businesses across Ontario that employ approximately 350 people -- 350 people who have had that opportunity to get their advocacy from each other over nine years. That's such a small, small number, and how many more -- hundreds and hundreds of people -- could have come that much further with the gains that we saw with the Advocacy Act? Now to see that being lost again, it's a setback.
Ms Hall: I think we need more than that. There's still such a small number of us and there are different needs. A-WAY can address people getting back control of their lives by helping them to earn income and helping them to get self-esteem from working.
Ms Hall: There are a lot of different disability groups, there are a lot of different issues and A-WAY can address one part of those. What about all the different groups? What about a disability group that's addressing different needs that other psychiatric survivors may have? There's no way to make those links.
The commission was something that would tie all of that together, help us to train and educate other people, help us to pass that information along. I think that's what's needed to really make a difference.
Mr Clement: I do take seriously your last point. There are umbrella organizations, however, in the advocacy world, such as the Ontario Advocacy Coalition, which we heard from very eloquently the other day. I'm hoping that we will be in a position to work with them to achieve some of our mutual goals.
I just wanted the brief time I have left to put on the record, in response to Mrs Caplan, that I don't really see any contradiction with what the minister has said and what we have examined in the focus groups. I think it's pretty clear that unless this committee changes our minds, our initial view at least is that there won't be a new Advocacy Act to replace the old Advocacy Act. However, there may be ways through government legislation -- amendments to other acts or other initiatives -- that can get us to the goals that we want to get to in a way that is both just and equitable and also cost-efficient. We would very much like to work with you to pursue those and we would love your insight and your input on how best to do that.
Ms Hall: Thank you very much. We would very much like to be part of looking at what the options are. I know there are many groups out there that feel they haven't had that opportunity and would look forward to that opportunity.