COMMISSION OF INQUIRY INTO UNREGULATED RESIDENTIAL ACCOMMODATION
ONTARIO PSYCHIATRIC ASSOCIATION
CONTENTS
Tuesday 24 March 1992
Advocacy Act, 1991, Bill 74, and companion legislation / Loi de 1991 sur l'intervention, projet de loi 74, et les projets de loi qui l'accompagnent
Witness
Family Coalition Party
Louis DiRocco, president
Margaret Purcell
Kerry's Place
Howard Weinroth, chairman of the board
Elaine Newman, board member
Roland Beauregard, second vice-chair
Commission of Inquiry into Unregulated Residential Accommodation
Ernie Lightman, commissioner
Isobel Hill
Ontario Psychiatric Association
Dr Brian Hoffman, chairman, mental health legislation committee
AIDS Action Now
Alan Cornwall, member, steering committee
Scheduling of Presenters
STANDING COMMITTEE ON ADMINISTRATION OF JUSTICE
Chair / Président(e): Cooper, Mike (Kitchener-Wilmot ND)
Acting Chair / Président(e) suppléant(e): Marchese, Rosario (Fort York ND)
Vice-Chair / Vice-Président(e): Morrow, Mark (Wentworth East/-Est ND)
Carter, Jenny (Peterborough ND)
Chiarelli, Robert (Ottawa West/-Ouest L)
Fletcher, Derek (Guelph ND)
Malkowski, Gary (York East/-Est ND)
Poirier, Jean (Prescott and Russell/Prescott et Russell L)
Sorbara, Gregory S. (York Centre/Centre L)
Sterling, Norman W. (Carleton PC)
Wessenger, Paul (Simcoe Centre/Centre ND)
Wilson, Jim (Simcoe West/-Ouest PC)
Winninger, David (London South/-Sud ND)
Substitution(s) / Membre(s) remplaçant(s):
Mancini, Remo (Essex South/-Sud L) for Mr Sorbara
Sullivan, Barbara (Halton Centre/Centre L) for Mr Chiarelli
Clerk / Greffier: Freedman, Lisa
Staff / Personnel: Swift, Susan, Research Officer, Legislative Research Service
The committee met at 1014 in committee room 1.
ADVOCACY ACT, 1992, AND COMPANION LEGISLATION / LOI DE 1992 SUR L'INTERVENTION ET LES PROJETS DE LOI QUI L'ACCOMPAGNENT
Resuming consideration of Bill 7, An Act to amend the Powers of Attorney Act; Bill 8, An Act respecting Natural Death; Bill 74, An Act respecting the Provision of Advocacy Services to Vulnerable Persons / Projet de loi 74, Loi concernant la prestation de services d'intervenants en faveur des personnes vulnérables; Bill 108, An Act to provide for the making of Decisions on behalf of Adults concerning the Management of their Property and concerning their Personal Care / Projet de loi 108, Loi prévoyant la prise de décisions au nom d'adultes en ce qui concerne la gestion de leurs biens et le soin de leur personne; Bill 109, An Act respecting Consent to Treatment / Projet de loi 109, Loi concernant le consentement au traitement; and Bill 110, An Act to amend certain Statutes of Ontario consequent upon the enactment of the Consent to Treatment Act, 1992 and the Substitute Decisions Act, 1992 / Projet de loi 110, Loi modifiant certaines lois de l'Ontario par suite de l'adoption de la Loi de 1992 sur le consentement au traitement et de la Loi de 1992 sur la prise de décisions au nom d'autrui.
The Chair: I call this meeting of the standing committee on administration of justice to order. Just a reminder to the committee members that there will be a subcommittee immediately following the proceedings this afternoon. We will have some things we have to discuss.
WITNESS
The Chair: I would like to welcome our first presenter. Good morning. As soon as you are comfortable, could you please proceed. Just a reminder first off that you have a half-hour for your presentation. The committee would appreciate it if you would keep your remarks to about 15 minutes to allow time for questions and answers.
Witness: I am not a political person. I am usually a very private person, and this is the first time I have done anything like this, so if I make any errors, please bear with me.
I felt these bills were very important. I have been doing some research, and I realized as I went back in my research that most of the people who were doing presentations or were consulted before the bills or before changes etc were always people who were in the health field, not other fields, were administrators of hospitals, professional associations, unions, agencies and those types of people, and the people who have these things done to them, for instance, the aged, the mentally retarded, the mentally ill, very rarely have a chance to have any input. I think the input has only been recent.
I think that should be changed. I think other people should have the input as well, because very often the associations may represent a lot of people, but there is not a unitary view. People who disagree do not come up here and do not say it; they say it among themselves or to people like me and various other people. So I think more weight should be given to other people.
Mr Poirier: Excuse me one second, please. I presume the person in front of us has chosen or asked not to be identified?
The Chair: That is right, Mr Poirier.
Mr Poirier: Okay, fair enough. Thank you. Sorry to have interrupted you.
Witness: I have talked to people and have friends in the health professions and have met people and have friends who have been labelled mentally ill, retarded and the aged. They have told me many things, but first perhaps we could look at the stereotype. The stereotype of all three groups is usually people who are not too bright or people who are damaged, who are somehow not quite the same as the rest of us. I hope that some of you go to see Dr Linus Pauling, who is coming. He is over 90 years old. He is still active, and he is still bright. There are many aged people like that. Some of those people end up in homes for the aged. The same is true for the retarded. Many people have been misdiagnosed, and until it comes to light through the media, we do not know. The mentally ill are constantly misdiagnosed.
I think the "right to consent to treatment" should be changed to "choice, the right to choose" one's treatment, whatever it is, based on being given all the treatments; not the pertinent ones or relevant ones. But all of the side-effects and benefits, not just the minor ones or the ones that might be relevant to the patient or the old person or whoever, should be put in written form as well. That way the person could get a second opinion if necessary.
Some people want to force treatment on people. I think that no one should ever have any treatment forced on them. I think that is against one's rights. Often people complain about their treatment. I think if any of us here had some of the treatment, we would complain too; things like Posey chairs being used in homes for the aged. There was a woman who owned an old age home who was put in a Posey chair. After she was put in the Posey chair she decided she would never use it again. I think very often until the people themselves have experienced the situation, they often do not know. I do not say that they are malevolent. I know some very good people in the field and some terrible people; I do not know them so much as I have heard about them.
I do not think people should be certified or in any way put in any institution without having the right to go before the law. There are people in these institutions who have never committed a crime. They may have had parking tickets or something minor, but that is totally different. I am talking about criminal offences. I think those people should have the right. As things stand now, in some cases they have a right to go before a review board within the facility or whatever, but it is after the fact. Often they have been treated with drugs that affect them and they cannot think, they cannot function. Then why should a person be -- I was going to say "incarcerated," but put into a facility, have something done, be interviewed, and sometimes these interviews are interrogations. If you do not want to respond, you are said to have a poverty of thought and various other things. I think that is very unfair whether a person is an old person or mentally ill or anything. People are presumed to have less capacity if they have certain labels. I am sure if any of the people here had been psychiatrized or whatever, they would not want the label to be known to their colleagues or to their opponents or whatever. I think that is very important.
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It is cheaper maybe to have the doctor sign you in, but sometimes the doctor is only a resident. Sometimes it is another health care provider. I tried to find out the definition of a health care provider. I finally found out it could be anybody. It could be a nurse's aide, an orderly, anyone. Now it is a doctor. Before, a long time ago, you could only be certified for two reasons: for homicide or suicide. Now somewhere along the way it is also if you cannot look after yourself.
I have more to say on this. I have to go on to the others because I am running out of time. Maybe you could read my submission. Please do, because I am not only talking on behalf of myself; I am also telling you some of the things that people have begged me to help them with. In the past I have never had the opportunity. The health care providers have also told me things they would like someone to do something about.
One of the things is that drugs are used in all three facilities in order to subdue and not for treatment. I think that should never be used. When I was an undergraduate, psychosurgery was frowned upon by the whole medical profession and everybody else and so was electroconvulsive therapy. Somehow there has been an increase. I do not know whose attitudes have changed but damage is still there. There was an excellent study done in I think 1985 by the government that indicated how much damage was done, but we are still giving ECT. I have heard -- I do not know if it is true -- that psychotherapy has been dropped, is not going to be paid for. Perhaps we should consider whether we should be paying for ECT the purpose of which is to give people seizures, grand mal seizures actually, and if it does not work the first time you do it again.
I have met some of these people. When they are not given a neurological workup and their histories are done incorrectly, people die. You do not hear about this. If you really honestly want all this done to you I do not say I am going to prevent you. It is your choice, but I think it should be an informed choice. You should know not only the pertinent side-effects but all of them. You should know the other choices as well, and sometimes people are only given that one choice, depending on age, sex, socioeconomic, the whole thing.
I should get on to the patient advocates. That is absolutely necessary. I had planned to come here but I was not able to, so I read some of the Hansards -- not all of them; I wish I had. Some people are saying: "Well, these advocates won't know anything. Why give them the records? Maybe we should have a pilot study." We have had a pilot study for almost 10 years -- I am not sure, nine years -- and this pilot study has saved many lives. It has also improved the future of some people. Some people have been so damaged that you cannot improve their lives very much, but you can a little.
On the patient advocates, I also have read a lot about it being adversarial. It is only as adversarial as the institutions and the providers of health care -- I forget the word that is used in the act -- make it. I think many of the staff are very happy to have the advocates. They have someone to bounce their ideas off or to talk to, because they are afraid to say something because with their union or association they might lose their job or suffer in other ways.
I admire Dr Martin for coming down here. He is going to get a lot of flak from his fellow doctors and I think he was very courageous to do so. Too bad other people have not done so, but I thought, "Why don't you do it?" But some people, if they are not there, someone else will come along. At least they can do some good. So I cannot blame them.
I think advocates should be in all of the hospitals. Right now it is only in the 10 institutions. I think not only for people who are incapacitated, but also for any -- I am running out of time.
In the Hospital for Sick Children you could have used the advocates because when little Steven Yuz died, I think that was an unnecessary death and it was determined the problem was psychogenic. It was on the X-rays. Many people said it was incompetence of the doctors. Those three doctors are still practising. They never lost anything. The little boy was brilliant, he was a beautiful eight-year-old child who might have been a doctor now. He was not the only person to die; many do.
Also, the 23 or 32 children who died in the cardiac unit, not all those children might have died if the parents could have talked to an advocate. Some people did want to; instead, they talked to the volunteers and something, but the volunteer cannot do too much besides listening and being supportive.
I think perhaps I should let you ask questions. I would appreciate it if you could read what I have to say.
I also do not think that anybody who is providing the treatment should be certifying the person, because they want the treatment and if they get a second opinion they will get someone who wants to do the same thing. If you do ECT you are not going to have someone who does not want to do ECT to support you. So I am not saying these people are bad. They do very good things but sometimes they do not. There was another important thing that I cannot think of right now.
The Chair: Thank you very much. I will assure you that each of the committee members will be receiving your brief once it is sent in and I am sure they will all read it. We have time for about four minutes for each caucus for questions and comments.
Mr Poirier: Pertaining to what you claimed for forced treatment, of course we understand what you are saying, that nobody should be forced to receive the forced treatment. Fair enough. How do you feel about the proposal from some of the schizophrenia people who claim that when their mind wanders and they start refusing to have their treatment that they think they need when they are in a sane mind -- would you feel comfortable if they could write a piece of paper that would state, "If you find me and I claim to not want to take my treatment, when I was lucid and sane of mind I know that I wanted that treatment, here's the treatment I want, here's where I want it, how I want it, what I want, and please give it to me even though I claim I don't want it"? Would you feel comfortable with that?
Witness: Sometimes people change their minds. I think perhaps that kind of paper should be taken into consideration, but I also wonder if that person was here to speak to you, I wonder in what way he was coerced. Was he told, "Well, if you do this you can stay at home; otherwise you're out on the street"?
There is a thing called tough love which is really rejection, so you are rejecting the people who have already been rejected and you toss them in the street. You do not let them come home because this is a way of treating a person. I think positive treatment helps. There are many ways of treating schizophrenia.
You have obviously -- I am sorry, obviously, I should never say that. You apparently have been told about one side. There are other treatments besides the neuroleptics and there are other things besides a genetic marker. You hear, "We want a genetic marker to get better drugs." There is another edge to that. Why do you really want a genetic marker? It could end up where you are having people aborted or having people sterilized, as was done in Alberta with the mentally retarded. It was frowned upon afterwards because these people were found not to be mentally retarded. I also know of a man who was called schizophrenic for 17 years and then, lo and behold, he became manic-depressive. This poor man was possibly neither. He was also very bright and his brother was a doctor. He had joined the Hare Krishna movement when he was young.
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When you listen to the words, if you know what the words mean, that is not word salad or any of the other terms. People are often misdiagnosed. Are you going to apply this to other people? If that person really wants it, then I am not going to say no. That is what I mean by freedom of choice. But if a person does not want it, and if he decides to change his mind -- you see, I often wonder why they give a major tranquillizer, a neuroleptic rather than something like Valium. Valium calms down the butterflies; the neuroleptics often increase them.
Mr Poirier: But I did not specify which treatment. That is not for you and me to determine right now.
Witness: That is what I am trying to say too. I am not determining anything.
Mr Poirier: Nor am I. I am not supporting one treatment or another. I am just claiming the person has described the treatment he or she wants and maybe also the list of treatments he or she does not want.
Witness: Yes.
Mr Poirier: That is fair with me. Would you be comfortable with that?
Witness: Provided it is done freely.
Mr Poirier: Of course.
Witness: Provided also that the person has been told of all the other treatments. For instance, orthomolecular treatment is high doses of vitamins and minerals. The psychiatric profession does not like this treatment. However, they give lithium, which is a mineral, in very high doses. When two milligrams is what you have in input, they will give as high as 1,800 for a small person. The therapeutic dose is close to the toxic dose. I cannot understand anyone -- not only myself, but many people cannot understand why you would decide the therapeutic dose not on observing how a person is acting, but on blood levels. If you give a person who is depressed a high dose of anti-depressants, he gets high. Then you say a person is high and low and then maybe he is manic-depressive. Once he gets that diagnosis you cannot get back to an anxiety reaction or reactive depression, which is more like a neurotic. I am sorry.
Mr Chiarelli: I am a bit confused. Did you submit a written brief to the committee?
Witness: It will be coming.
Mr Chiarelli: Okay. We will look at that when we receive it. I heard you loud and clear on the issue of advocacy. You support the principle and the concept of having advocates assist people under a range of circumstances. What I am not clear on, from your submission, is whether you support Bill 109, An Act respecting Consent to Treatment. That act itself has provisions whereby medical practitioners and people in the health care field have certain responsibilities with respect to treatment or people who have incapacities.
I take it you have gone through and read Bill 109, An Act respecting Consent to Treatment, but having made your submission I am still not sure whether you support the provisions of this legislation, whether you want them less restrictive or more restrictive. I am not sure what your position is with respect to Bill 109.
Witness: I believe you said that was consent to treatment?
Mr Chiarelli: Yes.
Witness: Okay, I believe I said it should not be consent to treatment, it should be choice of treatment.
Mr Chiarelli: So you disagree with Bill 109.
Witness: I do not disagree with it totally, I think it should be changed in order that the person has the choice. Like the man this gentleman described, that person should have a choice and so should other people. It should be what you choose, not consenting to a certain number of treatments, because very often you are only given one treatment, that or nothing.
Mr Chiarelli: Do you accept --
Witness: By the way, I do not think any health practitioner should be absolved of liability even when a person consents to treatment because generally people are not doctors, they do not have access to the information. I think everyone should be given access to information. I am just sad that some doctors think patient advocates should be personally liable, while they should not. I think they should not, especially in the case of the Yuz child. They only got three months' censure.
Mr Chiarelli: Can I ask just one short question?
The Chair: No preamble?
Mr Chiarelli: No preamble. Do you think there are certain people who are incapacitated to such an extent that they cannot exercise a freedom of choice and that there have to be health practitioners who respond to that?
Witness: I do not think health practitioners should be making the decisions, simply because health practitioners are saying, "We want this type of treatment for you." Very often people, especially the elderly and people who have other labels, are immediately certified as incapable. I do not know all the various terms. No, I think they should provide it, perhaps in conjunction -- I do not mean never. If a person has a good relationship with the doctor and the doctor gives all the information, yes. You do not need it, but --
Ms Carter: Thanks for your presentation. You sound like a great supporter of the spirit of our legislation, because what we are helping to do is to help people get what they want. As you probably realize, Bill 74, the Advocacy Act, is for advocates to go to vulnerable people, find out what their wishes are and help them to have those wishes carried out, and also to find out things that are wrong with the system and get something done about that.
We have heard from representatives of the kind of group you are speaking for -- the disabled, People First, psychiatric survivors -- so I think we have a fairly balanced view of that.
In Bill 74 we have a list of the categories of people who are going to be appointed to the appointments advisory committee, which will in turn set up the Advocacy Commission. We have not laid down strict guidelines as to how this commission should operate, what sorts of people should be advocates, how they should be trained and so on, for the very reason that we want those people who have been there themselves to have input. I just wondered whether you had looked at section 15 of Bill 74, the listing of the people who should be on this advisory committee, and whether you would suggest any changes to that.
Witness: I have a problem with organizations because sometimes the organizations will pick a person who will give a specific viewpoint. According to Health Watch, we have 1.5 million people who are mentally ill. Of those 1.5 million people, the stereotype of the not-too-bright or the violent is a very tiny portion. The people I have met first were professionals, academics and business people. I have met others since.
Ms Carter: But on this list we have eight categories. The last one, for example, is patients' rights organizations, organizations representing persons with disabilities. That is the kind of category we have here. I am just wondering how else you would set it up that would be more to your liking.
Witness: I think the people should not necessarily have to be chosen by the organization. I do not know exactly how; perhaps I could think it through and send it to you rather than wasting time. But I do believe the people who are receiving it should basically be in control. When we think of mentally ill people, I know professors etc, and I think those people are quite capable, far more capable than some of the people on the organizations.
I also doubt that some of the people who are criticizing patient advocates have ever met them. I think the most important qualification is the type of person. I think you should look first at the kind of person, and I think you know the qualifications. I have met only three. They are very special people and they are not antagonistic. I think they should have far more powers than they have now, because sometimes they are not allowed to have access to the information they need.
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Mr Winninger: I agree with you that there have been a number of psychiatric abuses in the past, and we have heard from some of the victims of those abuses. I also agree with you that the patient advocates have uncovered a lot of potential abuse and perhaps reduced the incidents that have gone on.
Where I do not agree with you, and perhaps you could clarify your position for me, is in this: I think I heard you say that there should be no civil commitment or treatment without consent. How do you deal with people who go around breaking windows or attacking people, not because they have any criminal intent but simply because they have a mental disorder?
Witness: I am sorry, I did not say simply "without consent." I said they should not be committed without consent unless they have had a chance to go before the law. A person can kill and be charged with manslaughter. He has recourse to the law, whereas the majority of mentally ill people or even people who are put into homes for the aged, sometimes, have not committed any crime, but the misdiagnosis is rampant. I am sorry but the abuses you are talking about still occur.
Mr Winninger: When you say "the law," you do acknowledge that there are boards of review in terms of civil commitment and consent to treatment?
Witness: But you see, if you commit a crime, you can go to the law before you are incarcerated, whereas if you are labelled, you can be put into a facility and then have to go before a board. I understand the doctor would be there, and when you look at who the board consists of, it is difficult. How are you going to get a lawyer and all of these things, and if you have been given treatment, you may not be able to --
Mr Winninger: Would it not be better to deal with these people in a more therapeutic way than to lodge them in detention cells and bring them before judges who may not have the training or experience or background --
Witness: What do you consider therapeutic?
Mr Winninger: What do I consider therapeutic? Well, a hospital setting as opposed to a jail cell and a court of law.
Witness: What do they do in the hospital that is better? There are some things you do in psychiatric institutions or psychiatric wards that you cannot do in a jail, because it is against the law.
Mr Winninger: Okay, thank you.
The Chair: Thank you, Mr Winninger.
Witness: And if a person has committed a crime, perhaps he should -- perhaps if you treat people better in a psychiatric facility -- I would like to think about that one.
The Chair: Thank you. On behalf of the committee I would like to thank you for taking the time out this morning and coming and giving us your presentation.
Witness: Thank you for listening. I am sorry, could I say one important thing? There are chemical sensitivities. People talk about pollution all the time now. Many people are ill with this. I think proper medical workups should be done before you ever say a person is mentally ill or incapacitated in any way, because if you do not take into consideration nutrition and chemical sensitivities -- medical professions accept that but certain people do not. I think people should have access to a proper evaluation, and not, you have a label, therefore you go, you get the same drugs, and for damage like tardive dyskinesia you get the same drug. What is the point?
The Chair: Thank you very much. We have to proceed, we have other witnesses waiting.
Witness: I am sorry. Thank you very much for listening, and please read the briefs.
The Chair: We will, thank you.
FAMILY COALITION PARTY
The Chair: I would like to call forward our next presenter from the Family Coalition Party. Good morning. You will be allowed a half-hour for your presentation. The committee would appreciate it if you would keep your remarks to about 15 minutes to allow time for questions and comments from each of the caucuses. Could you please identify yourself for the record and then proceed.
Mr DiRocco: My name is Louis DiRocco. I am the president of the Family Coalition Party. I am accompanied by Margaret Purcell, who collaborated with me on the brief. If you would like to follow, I will start on page 3, which is the preface.
The Family Coalition Party applauds the stated intent of the proposed legislation, to protect those who are vulnerable and incapacitated. However, contained therein are obvious flaws which would increase the powers of an already powerful bureaucratic system and, in so doing, present additional burdens for those the proposed legislation purports to protect, their families and the medical profession.
The bills offer little protection and in fact would pose a threat to the security and life of individuals and would intrude on the rights and privacy of families while producing a quagmire of administrative, legal and moral problems. This brief addresses the deficiencies and dangers inherent in the proposed legislation.
1. Consent to treatment: Personal autonomy, a long-held principle of common law, guarantees competent patients the right to accept or reject treatment. The proposed legislation therefore provides no additional rights in this regard. On the contrary, it has a propensity, because of vagaries in definition, to place the patient in greater jeopardy. What average patient would consider it necessary to specify that he or she wishes to be fed? Yet looseness of terminology in Bill 109, section 1, could bring food and hydration under the mantle of treatment.
While Bill 109, particularly when joined to Bill 108, can erode the common law rights of adults or those most qualified to speak for them, it empowers minors with decision-making rights for which they are neither prepared nor qualified. A minor may therefore refuse to have his or her immunization injections on the ground that needles hurt, just as he or she may refuse dental care for the same reason. Minors may receive psychiatric care without parental knowledge or consent, just as they may be sterilized, contracepted or give consent to an abortion. Subsection 8(2) and subsection 10(7) apply to that.
Bill 108, clauses 47(7)(a) and 56(5)(a), together with Bill 109, section 15, paragraph 2, would allow sterilization to be performed on the grantor if it were considered necessary or therapeutic. This constitutes a gross violation of a person's rights and dignity. Sterilization is never medically necessary or therapeutic. In this case a person's body would be mutilated without his or her knowledge or consent.
Subsection 7(1) of Bill 109 provides for the reinstatement of power of consent, only to see such reinstatement overridden by subsection 7(2) which upholds the authority of the guardian of the person and the attorney for personal care appointed under Bill 108. The same applies to subsection 22(7) which reinstates the power of consent, only to have reinstatement denied by subsection 22(8). The implication under these subsections is that once a patient surrenders his or her right to consent, it is gone for ever.
Bill 109, subsection 5(3), allows for consent by implication. This begs the question, consent for what, to whom, and by whom. These provisions alone disqualify the proposed legislation as that which would protect vulnerable persons. They make the already vulnerable decidedly more so.
2. Role of the physician: There is the implication in Bill 109, section 4 and subsections 5(1) and 5(2), that physicians routinely overtreat patients, with or without their consent. This implication is divorced from reality. The overwhelming majority of physicians want and attempt to provide that which is best for their patients.
If the provisions contained in these bills become law, not only would the professional, ethical and moral integrity of physicians be under siege, but the wedge created by such an intrusion would diminish the trust a patient has for his or her doctor. This trust is not only conducive to but essential for efficient and necessary health care. Without faith in one's attending physician, a patient's potential for full recovery is jeopardized.
Where cure and recovery is not possible, the alleviation of the patient's suffering, implemented within the confines of medical ethics, becomes the physician's prime responsibility. Because of the advanced understanding of pain control, supplemented by the specialized care in palliative medicine and services found in the hospice movement, such an objective is distinctly attainable.
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3. Rights and role of the family: The government's responsibility is to support and protect society, not to replace the family, which is the basic unit of society. Yet this proposed legislation seeks to not only weaken the structure and authority of the family but to force vulnerable persons into the arms of the state.
The family, traditionally regarded as the unit which offers the most protection and support for one of its members, will see its desires, rights and responsibilities superseded by the considerable powers enjoyed by the advocate, the attorney for personal care and the public guardian and trustee.
With Bill 109, subsections 16(1) and (4), setting the order of precedence regarding those who may speak for the incapacitated, the family comes last. Having already introduced an element of mistrust between the patient and the attending physician, Bill 109 implies that the patient cannot trust his or her family.
Bill 74 effectively places the advocate in a position of power over the family. His or her power to arbitrarily override decisions made by the family further undermines the family's role and diminishes the special relationship which normally exists between family members.
While Bill 74, section 30, does not require that the advocate give information to the family of a vulnerable person, the once overzealous attitude towards privacy becomes extremely transient. For example, sections 17 to 19 allow broad powers of entry. The terms of subsection 21(1) are so vague that an advocate could, in the absence of adequate checks and balances, enter a person's house with little reason.
There should be the presumption that the family, who know the patient or vulnerable person best, will be the most reliable source of support and care. The role of government here is to assist. A breakdown in familial structure is a breakdown in society.
4. Living wills: The logical conclusion to Bill 108 is the introduction of living wills. The stated purpose of the living will is to allow competent persons to specify the treatment they wish to accept or decline should they become incompetent in the future. As a legal document, a living will undermines the discretion of the physician, forcing him to comply with directives which may be detrimental to the patient, just as it confines him in layers of bureaucracy. It falsely implies that patients do not have the right to refuse treatment and reinforces the element of mistrust -- mistrust of family and doctor.
In its practical application the living will is seriously flawed. A document signed today may have, given ongoing advances in medical science, little or no relevance two years later. Similarly, the attitudes of patients change. A person who signs a living will while in a depressed or apprehensive state may change his or her mind and see life as something definitely worth living.
How does a living will signed in Ottawa affect a patient unconscious in Fort Frances? To be effective, will it become another part of a file entrusted to the state? Will this document become another page in the already far-too-open book on individuals?
Wherever living will type of legislation has been introduced, the push for euthanasia legislation has rapidly followed. The presumption in favour of life is eroded.
5. The living will-euthanasia connection: It is essential that those dealing with proposed legislation on living wills and natural death be aware of not only the organizations promoting living wills but also the moral and social fallout following acceptance of such legislation.
Derek Humphry, past president and cofounder of the national Hemlock Society and past president of the World Federation of Right to Die Societies, advocates the use of living wills to achieve euthanasia. He says: "We have to go stage by stage, with the living will, with the power of attorney. We have to go stage by stage. Your side would call that `the slippery slope.'"
The Iowa College of Law has drafted a Model Aid in Dying Act under the direction of Professors Sheldon Kurtz and Michael Saks. Professor Kurtz has directed other projects, such as the Model Human Reproductive Technologies and Surrogacy Act, which received serious consideration. The Model Aid in Dying Act is expected to be offered to legislatures across the US. It would allow parents of children under six years of age to request aid in dying for their children. Children six years old and over would be permitted to request death and, should parents disagree, allow a special aid in dying board to make the final decision.
Since Holland accepted a statute permitting living wills, evidence is mounting that euthanasia is administered to non-terminally ill patients. The Royal Dutch Medical Association has reached the point of advocating full active euthanasia, including the right of children to elect to die. The Dutch Medical Disciplinary Board, which may be considered the counterpart of the Canadian Medical Association, found a doctor guilty of breach of trust for declining to provide lethal drugs. Euthanasia has become so acceptable in Holland that every physician in the nation has been supplied by the Royal Dutch Pharmacists Association a 10-page pamphlet listing the most efficient ways to kill patients. It is now estimated in Holland that more people die by involuntary euthanasia -- homicide -- than by voluntary euthanasia. A recent government investigation has revealed that last year 15,205 Dutch patients were killed without their consent.
In California attempts were made in 1988 to amend the existing law. Speaking at the World Federation of Right to Die Societies convention in San Francisco, Robert Risley, coauthor of the Death Act and head of Americans Against Suffering, in speaking of the living will law said, "We must change the law ever so slightly." In speaking of death by starvation and dehydration he stated, "There is a better way," the proposed aid in dying: the lethal injection.
One year after California passed the nation's first living will law, Robert Duzon, administrator of the health care financing administration of the then Department of Health, Education and Welfare, suggested that living wills would be of major benefit to the nation's economy. Federally, the Patient Self-Determination Act, sponsored by Senators Danforth and Moynihan, requires health facilities or providers to ask if patients have a living will. Living wills are recommended as an ideal vehicle for trimming the federal budget. Also federally, Dr Otis Bowen, Secretary of Health and Human Services, when testifying before the Senate finance committee, stated that encouraging living wills was the only way to attack expenditures.
In May 1990, Hemlock's Washington state chapter and the Washington Citizens for Death With Dignity, Hemlock's political arm, implemented a signature campaign in support of Initiative 119, the death with dignity initiative, in attempts to amend the Natural Death Act, which concerns living wills, to include aid in dying or the lethal injection as an option for living wills.
In Ohio the living wills legislation, which has passed the Senate and is being debated in the lower House, has three major provisions: (1) expand the definition of "terminal condition" to include persistent vegetative state; (2) specify that food and liquids through a tube may be forgone in hopeless cases -- these two are identical to the position of the Hemlock Society of Washington state; and (3) that even though a patient has not completed an advance testament or living will concerning the withdrawal of a particular life support system, it can be presumed that the patient wants it.
Former Colorado Governor Rich Lamm was reported as telling senior citizens, "You've got a duty to die and get out of the way."
6. Basic care: Food and water, while being vaguely categorized as medical treatment in Bill 109, section 1, and Bill 108, section 46, is a fundamental part of basic care. We recognize that when death is imminent, attempts to feed the patient will be futile, burdensome and hazardous for the patient. At this final stage of life common sense and decency dictate that the patient should be kept comfortable and free from pain. However, the withdrawal of food and hydration under other circumstances will bring about an agonizing death for the patient and contravenes section 226 of the Criminal Code.
The promoters of euthanasia consider denying this elementary care to the patient a very important step towards introducing the lethal injection, all in the name of mercy, all on the false premise that health care providers deliberately prolong the act of dying.
7. Cost containment: Governments continually call for the streamlining of health care costs. This proposed legislation, if implemented, will magnify costs due to its bureaucracy. This government has already admitted that the estimated cost of administration will be between $20 million and $30 million annually. What will be sacrificed to pay for this unnecessary and fruitless project?
The present government shows no sign of being receptive to measures or incentives which would effectively cut costs while maintaining the integrity of the patient. Each year it spends millions of health care dollars on abortion -- the deliberate termination of a pre-born child's life -- going so far as to pay for the procedure, plus up to $1,000 in administration costs for each abortion and transportation costs for the mother, all of this for a procedure which cures no illness, alleviates no symptoms and which has never, in Canadian parliamentary history, been designated a medical necessity.
In spite of this immoral use of taxpayers' money, financial support for families willing to take care of patients in their homes is lacking. Financial assistance for house modifications, adequate training, nursing care, relief for family members and education in basic procedures would efficiently streamline costs while allowing the patient to remain where he or she is most comfortable. For example, the initial cost of building an extra room with bathroom is $25,000; nursing care on a daily basis, $30,000 per annum; medication costs, $12,000 per annum; transportation, $1,200 per annum; total cost for the first year, $68,200; total cost for subsequent years, $43,200 per annum. The cost of maintaining the patient in chronic care hospital at $500 per day is $182,500 per annum; at $1,000 per day the cost is $365,000 per annum.
Add to this the estimated cost of administration, $20 million to $30 million, and it becomes abundantly clear that in terms of cost alone most chronic patients should, wherever possible, be cared for at home. Home care in terms of personal privacy and dignity cannot be compared, in most cases, to institutional care.
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8. Ambiguities: One of the disconcerting aspects of these bills rests in their propensity to be ambiguous. Here are three examples:
Vulnerable person: The definition of "vulnerable person" in Bill 74, section 2, is so vague that it could include almost anyone, thereby allowing an advocate to intrude indiscriminately in family life.
Capacity: One of the most glaring inconsistencies in the legislation is the absence of a provision to determine whether the grantor has the capacity to give power of attorney for personal care. If the grantor lacks capacity to make decisions regarding his or her personal care, how can he or she assign an attorney or name assessors who will assess his or her capacity?
Advocate or assessor: Another ambiguity is the role of the advocate and of the assessor. These two persons have considerable power and responsibility, yet nothing in the legislation requires that they have even minimal qualifications and training or defines the procedures and standards under which they would carry out their responsibilities.
9. Conclusion: This legislation sets up an impersonal, bureaucratic system which would permit certain persons to control the lives of vulnerable people or even determine whether they live or die. These persons would legally make decisions over which vulnerable, incapable people or their families have no control whatsoever.
The proposed legislation has the capacity to establish another level of impersonal, state-controlled bureaucracy which will strip individuals of their human, social and moral rights. By denying the family the right to make ethical decisions, it allows the state to make life and death decisions on a quality of life and cost containment basis. This is a proven technique in the dehumanizing and destruction of society well documented by the events immediately preceding the Second World War. It is doubtful that a once noble culture will ever totally recover from the assault on and the eventual surrender of its humanity.
The Family Coalition Party opposed Bills 131 and 132, just as it opposed Bills 7 and 8. It categorically opposes these bills, which would not be made acceptable by amendments. It calls for the immediate, total withdrawal of this proposed legislation and calls upon the government to return to its role of servant, not master, of the people. Thank you.
Mr Poirier: I presume, from reading your brief, that you are against the principle of, for example, the current age for young people as per the bill being 16 to be able to have access to medical treatment without parental consent. Do I read that correctly?
Mr DiRocco: As a general rule, yes. Do you want me to comment further?
Mr Poirier: Under no circumstances would young people under 16 have access to medical information or help or whatever it is without their parents' knowledge.
Mr DiRocco: The danger here is that minors could have access to the things we mentioned without their parents even knowing about it. There is that possibility.
Mr Poirier: Right, but do you oppose their capability of giving consent under the age of 16 to any treatment or to specific ones?
Mr DiRocco: Certainly the ones we mentioned. Do you have further comments?
Mrs Purcell: I think that at the age of 16 a person is not qualified emotionally or otherwise to make certain decisions, so in that regard the person should be accessible to support and counsel from those whom he or she should most trust: the parents and members of the family.
Mr Poirier: How about if a young person under 16 wanted to have access to contraception?
Mrs Purcell: I would be opposed under any circumstances for a number of reasons. For one thing, I do not think contraception should be the means to letting boys use girls as sexual garbage dumps. I also have concerns about the side-effects of contraception on young and more mature people, so I would certainly be opposed to contraception under any circumstances, but under circumstances where the guardians of the young person are not informed even more so.
Mr Poirier: How about access to condoms for young people under 16?
Mrs Purcell: I think that when we make condoms accessible to anybody under 16 or otherwise, we are playing Russian roulette with another person's life. The manufacturers of condoms themselves admit that the condoms have between a 17% and a 30% failure rate. You would not let your child drive a car that had a 17% or 30% failure rate. Similarly, I would be absolutely opposed to the distribution of condoms particularly to a minor and particularly without parental knowledge.
Mr Poirier: How would you protect young people under 16 from sexually transmitted diseases and AIDS?
Mrs Purcell: The only proven protection against sexually transmitted diseases is a monogamous relationship, desirably within the confines of marriage. I would hope that once again by brainwashing we would not force upon our young people an emotional relationship for which they are not prepared. Any relationship, to survive, must have commitment. That means responsibility as well as rights. I believe this does not come with a loose type of relationship devoid of commitment.
Mr Sterling: Given that the present law recognizes a living will, do you not think it is in the vulnerable person's interests to define in legislation the limits of a living will, to define whether that person is capable of making a living will and to define how a health care provider should interpret that living will? Do you not think it is better to confine? In effect, what this legislation does is confine the use of a living will rather than open it up.
Mrs Purcell: I do not see that the living will really serves any purpose that cannot be served without the use of the living will. One of my primary objections is that it is undermining and even usurping the discretion of the attending physician, which brings me back to an earlier point that we seem to be promoting the philosophy that patients are overtreated with or without their consent. I myself come from a nursing background. It just simply does not happen. We do not have the facilities or the desire to routinely and seriously overtreat patients. So I would be concerned about removing the power of discretion from the physician. Even though their track record with regard to abortion is absolutely abysmal, apart from that, I believe the average physician truly has the best interests of his or her patient at heart.
Mr Sterling: You did not answer my question though, with respect, but I have come to the conclusion that you would rather give the health care provider the decision over life and death decisions than the patients themselves.
Mrs Purcell: We are talking about incompetent patients here, because that is the purpose of the living will, which brings me back to another point. I believe consultation should be made with those who know the patient best and care for the patient best. That is normally the family.
Mr Sterling: But there is not always a family.
Mrs Purcell: That is why I said normally. In other circumstances, you might want to consult another person who knows the patient well. It might be a friend or an associate etc. What I am concerned about is the erosion of the rights and the input and consultation by those who should know the patient best.
Mr Sterling: Could I go back to my original question that a living will is legal in Canada and in Ontario at the present time? How can you argue against legislation which, in effect, legitimizes the living will in that it requires certain witnesses, it requires certain assessment of the individual as to his or her capacity to make that living will? How can you argue against legislation which, in effect, limits living wills rather than expands living wills as they presently exist in law?
Mrs Purcell: Well, you are inferring, first of all, that what is legal is right or good, and I would have to dispute that very strenuously. Regardless of whether or not it happens to be legal, I do not think it is good. I am saying that a living will does not give to a person, on the average, something that he or she does not always have.
Mr DiRocco: Already have.
Mrs Purcell: Already have. I am sorry.
Mr DiRocco: I would like to add a couple of points to that. The document the patient signs at the time he signs it may not be implemented in the way he projected that. Two or three years later the situation may be changed and the interpretation given to the living will by the person attending may be quite different from what the person intended when he or she signed the living will. So that is another reason we would not be in favour of such a document. The actual patient may have changed his mind about it, about his particular treatment or what he wrote in the living will, and he was not able to notify his physician or may even have forgotten to notify his physician. There are all kinds of situations. You cannot possibly account for every possible circumstance in a living will.
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Mr Sterling: I agree. Your paragraph in your conclusion says, "The legislation sets up an impersonal, bureaucratic system which would permit certain persons to control the lives of vulnerable people or even determine whether they live or die."
But what happens now, sir? Now certain people make those life and death decisions. The purpose of a living will and a power of attorney, as put forth by myself in my private member's bill and I believe embodied in this legislation, is to take away the decision from people now who are determining life and death decisions over people in Ontario and give it back to the person who is living or is going to live or is going to die. In other words, respect that vulnerable person's wishes. How can you argue against such a basic, basic principle?
Mr DiRocco: Well, we just have.
Mr Wessenger: It seems to me that what you are telling us is that you do not agree with the existing principles of common law that a competent patient has the right to accept or reject treatment if that competent patient happens to be a minor. Is that what you are saying, that you do not really believe a child who is capable of making a decision with respect to his own treatment can make that decision on his own?
Mr DiRocco: Normally you would consult the parents of such a child. What we are concerned about is a child, let us say it is a teenager -- and our party, you know very well, is concerned about abortion, for example -- could go to a doctor -- the parents would not even know that their daughter was pregnant -- and could arrange an abortion. They would not even find out about it. That is possible under this legislation. Do you not think that the parents should at least know about such a situation?
Let's say that their daughter or son is depressed. Do you not think that they would want to know whether their son or daughter is depressed? Under the circumstances, the doctor would call in an advocate; the doctor would not call the parents, he would call an advocate under this legislation.
Mr Wessenger: Sorry, you are quite incorrect with respect to the matter of the advocate. The way the situation now works with a minor child, a minor child goes to the medical practitioner, the medical practitioner now determines whether the minor child has the capability of making the decision. If the medical practitioner or health practitioner decides that the child does have that capability, then the practitioner takes the instructions from the child and gives the treatment. That is the existing law, and Bill 109 in no way changes that principle; it merely tries to clarify the principle.
Mrs Purcell: I do not think that it has clarified it sufficiently. I have shown these bills to several people, all of whom I would regard as well-educated people, all of whom I would regard as being those who would seek the truth, and all of those people have come up with concerns regarding the ambiguities and the lack of clarity in the bills in all those regards. When there is lack of clarity with one thing, it begs the question of what else is not being made clear to the Ontario public.
Mr Wessenger: The other thing I would just like to clarify is section 15 provides that, "Nothing in this act authorizes a health practitioner to perform...sterilization that is not medically necessary for the protection of the person's health." So it seems to me that your comments with respect to the question of sterilization are incorrect.
Mrs Purcell: Absolutely not, because who decides what is medically necessary? How would sterilization, within itself, possibly be construed as medically necessary or therapeutic?
Mr Wessenger: I certainly could think of circumstances where a pregnancy could result in the death of the individual.
Mrs Purcell: Then you are looking at a pregnancy; you are not looking at the actual sterilization. I dispute that a death is going to be the result of a pregnancy. A 10-year study of the largest obstetrical hospital in the British Isles has failed to document one single case where a person has died simply because of a pregnancy.
Mr Wessenger: I would also like to point out some inaccuracies in your brief with respect to the cost of institutional care. First of all, chronic care costs are generally $200 a day per patient, not $500 as indicated. Second, with nursing home care, the costs are approximately $25,000 per year in an institution, although I agree with you that it is certainly beneficial to keep people in their own home and have the family look after them.
Mrs Purcell: You should speak to the government agencies. I got my information from them.
Mr Winninger: Just in terms of Bill 108, under section 4, living wills, you state that: "In its practical application the living will is seriously flawed. A document signed today may have, given ongoing advances in medical science, little or no relevance two years later." That is precisely why you see subsection 63(3) in Bill 108, which deals with more recently expressed wishes, read together with clause 28(1)(c), where there are more recent wishes expressed in Bill 109. Those wishes and instructions can be taken into account, particularly in regard to advancements in medical technology and the kind of treatment benefits that might flow from that.
Mrs Purcell: By an unconscious patient perhaps?
Mr Winninger: Yes, and the only other quick point is this: You question the capacity of someone who executes a power of attorney for personal care. We have tightened up the requirements for powers of attorney. You require two witnesses and those witnesses attest to the capacity of the person who executed the power of attorney for personal care. If you wanted to question capacity, you could question the capacity probably of every will that has ever been executed, because you have similar provisions, two witnesses testifying for the capacity of the testator. I have some difficulty buying into that argument that people may not have capacity, simply because we have safeguards in place to ensure that the person who executes the power of attorney does display capacity.
Mrs Purcell: We are just asking that they be made clear -- well, saying that they should have been made clear. We are not asking that they be made clear because we would like to see all the bills withdrawn.
The Chair: Mrs Purcell and Mr DiRocco, on behalf of this committee I would like to thank you for taking the time out this morning and coming and giving us your presentation.
Mr DiRocco: You are welcome.
Mrs Purcell: I want to make one comment before I go. I got my figures from government agencies.
The Chair: Thank you very much.
KERRY'S PLACE
The Chair: I would like to call forward our next presenters, from Kerry's Place. Good morning. Just a reminder you will be allowed a half-hour for your presentation. The committee would appreciate it if you would keep your remarks to about 15 minutes to allow time for questions and comments from each of the caucuses.
Ms Newman: We are going to do our best.
The Chair: As soon as you are comfortable, could you please identify yourself for the record and then proceed.
Ms Newman: I would be glad to. My name is Elaine Newman. I am a lawyer. I am a full-time vice-chair on the Workers' Compensation Appeals Tribunal, but I am here today in my capacity as a member of the board of Kerry's Place. With me are Mr Howard Weinroth, chairman of the board, and Mr Roland Beauregard, second vice-chair. You had some other names on the schedule of members of our delegation, but unfortunately, due to illness, we are limited to the three of us this morning.
I would like to take a few moments, if I may, to make some submissions to you and then invite you to ask questions, which Mr Weinroth and Mr Beauregard may be better able to answer than I. I would like to take a few moments to explain to you what Kerry's Place is. I would like then to take a few minutes to explain to you the nature of the disability we are concerned with this morning and to explain to you what, in our estimation, the impact of the proposed consent to treatment legislation would be on the population we are concerned about. We are here this morning only to address some narrow areas of concern that pertain specifically to the Consent to Treatment Act.
Kerry's Place was founded in 1974 by a group of concerned parents and professionals familiar with autism. It was founded for the purpose of providing services to people with autism, and that includes residential services, educational, vocational and social services. The organization has grown over the years, and now it includes six residential centres and a network of community services.
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Kerry's Place represents a very small population in comparison to that which you are accustomed to hearing about in these proceedings. We are here to talk to you about the concerns of our population, and our population is only approximately 100 people with autism, although we do not represent all of the people in the province of Ontario with autism, only those who are affiliated in some way with Kerry's Place. So this organization provides services to a small population of children and adults who have autism. Kerry's Place operates according to a specific philosophy. I have summarized that for you at the first page of our brief submission. If I may, I am going to quote very briefly:
"Kerry's Place views every client first of all as a person, not as an autistic person, but as a person with autism. Each client has likes, dislikes, and the same rights to independence and the pursuit of happiness that all other individuals have.
"Kerry's Place strives to help each individual reach the highest level of independence in a lifestyle that they are able to achieve. Kerry's Place will advocate on behalf of its clients for whatever provisions are necessary to make this achievement possible."
But this is an organization in which all involved, at the board level, at the service provision level, are very much devoted to the notion that each individual is to be respected, that his or her abilities are to be enhanced to the greatest degree possible.
What we wish to do this morning is to articulate in the context of this particular and special population some of the practical implications which the proposed consent to treatment legislation will have. But in order to make that position clear, it will be necessary for us to explain the nature of this rather peculiar disability. This is not easy, because not a great deal is known about autism. Not a great deal is known about the cause or about the exact nature of the disability. We do know that it is primarily a communication disability. Although often people with autism also have other problems or disabilities, this is not universally so.
It is important for the members of the committee to understand that autism is not synonymous with developmental disability. Within the Kerry's Place population, therefore, there are children and there are adults who are bright, intelligent, capable and insightful people. Their problem, however, is that they cannot communicate. Many aspects of their appearance, aspects of their behaviour, may cause them to appear to be developmentally disabled, so autism is easily mistaken for a developmental disability. This is true not only in the general population, in the general public; this is also true among physicians, it is true among psychiatrists and it is true among neurologists. Autism is difficult to identify, and it is difficult to diagnose. Therefore, it is common for people with autism to mistakenly be identified as people with a developmental disability.
Within Kerry's Place there are people who suffer from varying degrees of developmental disability, and there are people in this population who would lack the mental capability to provide consent to treatment. But within this population there are also some very high-functioning individuals whose problem is only that they will not be able to communicate and they will not be able to convince a health practitioner that they are mentally capable individuals.
Let me explain one other aspect of autism and about communication for people with autism. It is something with which you may have become familiar recently. This is a mechanism of communication called facilitated communication. You may have read about it in the Toronto Star; you may have seen the 5th Estate program or The Journal article or the 20/20 program on facilitated communication. It is a very recent development and, again, very little is known about how or why it actually works, but a person who has autism may be able to communicate using this recently developed process called facilitated communication.
With the help of another person, a facilitator, the individual may be able to point to letters on a board or may actually be able to type letters into a keyboard and spell out words. The other person, the facilitator, is necessary to sit beside the individual with autism to guide his hand and to exert a pressure which acts as a counterpressure. That appears to enable the person with autism to have greater muscular control. So another individual is necessary, as well as the mechanism, either the letter board or the typing equipment.
Through that very slow and very painstaking process, some people who have autism have recently, for the first time in their lives, been able to communicate. Within the past year, and for some the past two years, for the first time in their lives they are able to communicate with the rest of us and they are able to tell us, through this means of spelling out words, their wishes, their preferences, their desires, their thoughts and their feelings.
As a result of this quite remarkable and recent development, we have learned that people who are in this population have much more high-functioning abilities and much greater intellectual sophistication than we ever thought they had before, because now, for the first time, they are able to communicate. It is an astonishing process. It is one we do not understand. It is one that health care professionals do not completely understand. But we do know that for the first time people who suffer from this very challenging disability are able to communicate. What comes with this is a very new and a very fragile self-esteem. This is very exciting.
For the first time some of the Kerry's Place population are able to communicate what it is they are thinking and feeling and what it is they want, and for the first time their wishes are being respected. That is a very exciting process. This is a process which the Kerry's Place staff and board and families are devoted to enhancing. They are devoted to enhancing the sense of dignity and self-esteem that comes from being now able to communicate. So we have a very unusual population. We have a population where some of our members very remarkably have recently developed the ability to communicate and a fresh, burgeoning sense of self-esteem.
What does all of this have to do with Bill 109? We have sat down and tried to project what some of the practical implications of Bill 109 will be for our clients and of course for our staff and for the families who are involved. We would like to share those with you.
Our concerns stem from the conclusion that Bill 109 as presently framed is going to make routine health services virtually inaccessible to part of our population. That is an astonishing discovery, because by and large Kerry's Place encourages the legislative initiative that is here under discussion: the concern for vulnerable people, the importance of seeking the consent of the individual and making him or her an involved player. These are theories that we agree with entirely, that we strive to achieve in our own work. But because of the way the legislation is structured, that is not going to be the effect this legislation will have on this population. Quite the reverse is true. What is going to happen here is that routine health services are simply not going to be accessible. Let me explain why that is.
Let's contemplate a mentally capable adult, a 19-year-old person with autism who is very bright and very capable and who knows exactly why he or she is going to the doctor but is not able to communicate with the doctor. This is an individual who may mistakenly look mentally incapable. He or she may look developmentally disabled. They are not going to be able to convince the health practitioner that they are capable. In the unlikely event that a facilitator is available to go with the person to the doctor, it is extremely unlikely that even the most well-intended and well-motivated health practitioner is going to have the time to sit down with the person and embark on a facilitated interview.
I conducted an interview with Mr Weinroth on Sunday afternoon. It took approximately an hour and a half for us to go over some basic material. In the course of that interview, I explained to him the nature of this legislative initiative and learned of his responses, and he shared my concerns. I was impressed, certainly, by the degree of sophistication of the responses, but I was more practically impressed with the amount of time that it took him to communicate with me. It is a very slow and painstaking process.
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Now what is going to happen? The individual will go to the doctor, probably with a parent or a staff person from Kerry's Place. The doctor is not going to be convinced the individual has mental capability and that doctor is not going to be able to provide service. He simply will not be able to. He will not be comfortable doing it, and in fact this law will preclude him from doing it without triggering a complex process of putting the individual on notice that he feels the individual is not capable, calling in an advocate and then looking for substituted decision-making. That is an extraordinarily complex route to have to go to have a routine medical examination performed, but that would be the application of Bill 109 to this population.
The other pieces of legislation you are contemplating in conjunction provide an answer for part of our population and part of the disabled population in the province, and the answer is, if all that is too complicated, the route is to go to a court and get an order for personal guardianship.
First of all, a 19-year-old mentally capable individual who cannot communicate does not have that option. If the parent was to go to court and seek an order to become the personal guardian for the purpose of communicating the individual's wishes, that order is not available to him because the person we are talking about is indeed mentally capable.
For those who are less mentally capable -- and as I have said, they are included in our population in varying degrees -- our concern is the same as that which you have heard from the Canadian Association for Community Living and many of the other associations: that a global capability determination and personal guardianship appointment is an affront to dignity which is too comprehensive for the kind of problem these individuals may face.
I must add a specific concern with respect to part of the Kerry's Place population that we are concerned about. Those are the mentally capable individuals who have only recently begun to sense self-esteem. These people are going to face regular, routine challenges to their mental capability every time they have to go to a doctor, every time they go to a chiropractor, every time they seek routine health services. I suggest to you for someone with a brand-new, fragile sense of self-esteem, repeated routine challenges to mental capability are going to be very difficult things to face. It is going to operate against the effort of the Kerry's Place organization to enhance self-esteem. We will have taken an enormous step forward in terms of communication and individual dignity, and every time the individual goes to seek health services, he is going to be challenged with a new investigation into his mental capability, an extraordinary challenge for this unusual population.
Do we have an answer for you? Do we have a quick fix or a quick amendment which will make your jobs easier? No, I regret we do not. We recognize that our submission is in an unusual context, and it does pertain to a relatively small population. However, we want you to understand that notwithstanding the lack of clarity that we operate within at the present time, the lack of clarity and the lack of statutory intervention right now enables this particular population to get health services. This is one of the unusual circumstances in which the foggy legal environment is one which works in favour of the population. Our people have no trouble getting top-notch health care.
This is an environment which operates in the context of respect for the individual. To the greatest extent possible, the individual's wishes are sought and are reflected in the decision. Our fear here is that the cure is going to be detrimental and it is going to be worse than the evil which we are seeking as a society to address.
Those are our submissions. If you have questions, as I have suggested, it may be that Mr Beauregard or Mr Weinroth would be better able to answer than I, and we thank you for your attention.
The Chair: Thank you. Each caucus has three minutes.
Mrs Sullivan: I think if these hearings have done little else, they have certainly brought to the attention of the members of this committee the varying scopes and broad base of differences in our population. I think for that purpose it has been very useful that you have been here.
We are dealing with legislation which is very broad-based, which is being designed to apply to all scenarios and is all-encompassing, and I think the point you make about the requirement of Bill 109 for repetitive capacity assessments -- which would not only be limited, interestingly enough, to the autistic patient. There are many other patients whose organizations and agencies and support groups have been before us who have indicated that this same kind of thing would affect them and would also have an effect on the self-esteem of the people involved.
A number of organizations have come before the committee -- and they include the Ontario Medical Association, the Friends of Schizophrenics, the Nurses' Association of Ontario, the College of Physicians and Surgeons, the College of Nurses of Ontario, the association for residential care and the Metropolitan Hospital Council -- and indicated that they feel the best way to proceed with this legislation is indeed to withdraw it, to submit the government amendments and let people have a view of what those amendments are and provide time for an analysis of those amendments and possibly additional public hearings before proceeding any further. That is a view my party supports, because we are very concerned about some of the very issues you have raised, and we feel that is the only rational method of proceeding, other than abandoning the whole process. I wonder if you would support that kind of step so that if there is going to be a statutory clarification of common law, that would be the appropriate approach.
Ms Newman: Yes. In our view the initiative, as I have said, is one which is very important. The members of this delegation have been involved with different segments of the community of disabled people in this province for a very long time. We appreciate that the complexities are vast; the array of problems, the variety of problems, is extraordinary. We learn more about disability every year.
This initiative is one which in context has been rapid. Because of the importance of the issue, because of the fear of abuse, it is one which may have been too rapid, and we certainly support an initiative which would not lose sight of the importance of the issues but would enable greater thought and greater clarity to be brought to the process.
Mr Poirier: Obviously you may claim that you are a small number of people, but the fact is, regardless of how many people there are, I am glad you came forward and explained how in the practical application this is going to cause more problems than anything else.
I am a Capricorn and a very realistic type of person. How would a health care giver be able to know, in all good faith, that the person in front of him or her does have full competency? How do you go about doing that, and is it common for a person with autism to come forward all by himself or herself to the health provider? Is that common? I am trying to put myself in the shoes of that health care provider. How would I know?
Ms Newman: Yes, it is an important question. Perhaps Mr Weinroth or Mr Beauregard can explain the kind of comfort level that has been achieved among the clients of Kerry's Place, the service providers and families to offer that kind of confidence to the health care provider.
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Mr Weinroth: Prior to the arrival of the individual with autism at the health care practitioner, whether it be a doctor, chiropractor, dentist etc, it has been explained to the individual the reason for the up-and-coming visit, what could entail during the visit. If contact with parents is done on a regular basis, parents are certainly informed. With the tremendous excitement generated by facilitated communication, a facilitator will accompany the individual to the health care practitioner and the whole process will be further explained onsite.
What we have always done is maintain a very close and healthy relationship between the parents, where possible, and the care giver. Ours is a very caring staff. Most of the time the individual is accompanied by a staff member. The agency has on file regular visitations with various health care practitioners. They also involve the individual with autism in the planning of care. Even before facilitated communication, what we tried to do was be a holistic organization where we involve the parents and, where possible, the guardian of the individual for total care, not just medical care. We have always tried to maintain this relationship. We have always tried to maintain consent to our plan of care. We always try to incorporate in the plan of care the wishes of all concerned, and now more so with facilitated communication the consent of individuals is sought and appreciated, incorporating their wishes. It is a very complicated process. When the individual arrives at the doorstep of the health care practitioner there has been much planning and preparation.
Mr J. Wilson: Thank you very much for your presentation. It is always interesting to follow the individuals as we do here in rotation. I did not know Mr Poirier, for instance, was a Capricorn. I am just wondering if you have had opportunity to compare notes with Nancy Reagan on how horoscopes are involved in decision-making.
None the less, we too as a caucus have expressed many of the concerns you have brought forward in your brief, as have many other groups. Briefly, to play devil's advocate, you make a point in your brief about, "Capacity determination procedures invite applications for personal guardianship." I read into it that this could be very intrusive to people living with autism. You go on to say it would cover many cases; in fact "all purposes" is your language. I am wondering, though, with the new communication techniques you brought to our attention -- and I think many of us saw the TV programming on this -- will the courts not take into account the wishes of the person with autism?
Ms Newman: Mr Wilson, one of our preliminary problems is that at this point we have some concern about whether facilitated communication would be an acceptable method of interpretation in courts of law. Facilitated communication is difficult because another individual is involved in the process and there has been some question raised about the degree to which the facilitator inputs into the answers of the individual. We expect it would be some time before we are able to establish facilitated communication as a recognized form of interpretation. It is one that has people puzzled and concerned.
Having said that, it is certainly our hope that the wishes of the individual would be taken into account by the court, but there again it is a catch-22 situation. If a judge is looking at an application for personal guardianship, he or she has to make a finding with respect to mental capability. On the one hand, many of these people are mentally capable. The problem is communication. For those individuals, the court cannot make a finding that there is a lack of capability and cannot appoint a personal guardian. We would have a very disabled person who cannot communicate but who has inside of himself privately a great deal of mental capability. That person is going to be in a difficult position.
For those with less mental capability, the position is very much the same as that which you have heard with respect to people who suffer from slight degrees of developmental disability or fluctuating psychiatric conditions. Determination of mental capability for one purpose may not hit the mark for the others.
Mr J. Wilson: Thank you. Your comments were very helpful.
Mr Fletcher: Thank you for your presentation. I want to relate a bit of a story. It is about my ex-doctor who developed MS. As the disease progressed, he had to give up his practice. He was in a wheelchair. We were talking one day and he mentioned how he has to relearn and rethink everything, because of his disability, in how to treat disabled people. He never realized how to treat disabled people until he actually became disabled.
I noticed, as I was reading through your brief, you talk about practitioners who will not be able to communicate with people or understand people. It appears to me that the education, as far as the vulnerable person is concerned, is shifted to the practitioners, the health care providers, who need to be educated perhaps on how to communicate and how to deal with people with disabilities.
The other part of it is that you say people are going to their practitioners and their health care providers on a routine basis for routine medical care. After a while my doctor would pull out the file; he knew who I was and he knew the treatment. I think the same thing would happen after a while. Once a person is going on a routine basis to a doctor, the doctor gets to know things about each patient and how to communicate with him or her. It may be a long process, yes, but I think in the end the individual's right to treatment should be respected by all doctors and by all health care practitioners. If they are willing to communicate, then that in itself should be the first step.
I do not see where the bill would get in the way if people can communicate, if the practitioner and the health care providers are performing their functions in the right way and if they respect their patients. Maybe part of the problem is that the medical association should be educating doctors in that way, and it is not happening. There are other things that get involved with this piece of legislation. I do not know if that is a question. Maybe it is more a comment than anything else.
Mr Weinroth: I am wondering if the letter of the law may tend to discourage doctors from looking favourably on patients who have been in their care for a long time and who do understand the disability and do share concerns. The law itself, as it is currently written, does not require the practitioner to presuppose or to seek mental competency on the part of the patient, even though he has know the individual for a long time. Would that not be enough of a scare tactic, a threat, on the part of the doctor to override his responsibility to the patient?
Mr Fletcher: Perhaps I am a little old-fashioned, but I still do hold health care practitioners and doctors in high esteem. I cannot see them using a law to the detriment of a patient if they know the patient and they have worked with the patient. Maybe it is naïveté on my part that doctors are that way.
Ms Newman: It may be, Mr Fletcher, that certain members of this population will have long-standing relationships with physicians and they will not face these difficulties. It may well be that some of them will be able to create in their physicians sufficient confidence in their mental capability to make their repeated routine challenges into mental capability unnecessary. That is something we cannot count on.
Certainly there is enough fluctuation in the medical community that our population, like any other, from time to time has to face a new medical practitioner: the doctor is out of the office and another doctor is in the office taking care of his or her patients; they are on vacation and a locum is in taking care of the patients; a new staff member comes in, or the clinics trade. The doctors trade patients and share patients and work cooperatively, so the individual relationships cannot be counted on as much as perhaps they used to be.
In this population as well, there is a need for access to a variety of different medical services. Chiropractic medical services are included in the definition for these purposes, neurological services, sometimes psychiatric. There is no community of medical practitioners with specialization in this area that this population repeatedly turns to. It is not as though we are going to the one specialist in the field in the province who has the facility in the area. It is necessary for our population to turn to the general population of physicians across the province.
I will add that although Kerry's Place represents only 100 people with autism, there have been estimates that there are as many as 10,000 people with autism, children and adults, in the province of Ontario, spread out all over the province, having access to the general medical population as well.
Mr Fletcher: Let me just say thank you for your presentation. If I were incapacitated, I would like to have a place like Kerry's Place to advocate on my behalf.
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Mr Malkowski: Thank you for your presentation. Personally, I have had the opportunity to work with children and adults who have autism, and I would agree with what you say. There are different needs within that population, some who are high-functioning and some who are no different from the general population. All it is, is communication needs.
People who have autism could use the computer as a communication facilitator; they could even use sign language because they have an opportunity to express themselves in a way that is not based in research yet. There are many deaf people who would prefer to use sign language interpreters to communicate with doctors because they feel more comfortable, but the doctors do not feel comfortable using the interpreters. Perhaps the medical professions would not feel comfortable with facilitators, but if they become familiar with the person and familiar with the environment and look at what is best for the person, then they would become more comfortable. So I would like to ask you this, specific to consent to treatment: If we look at the mode of communication or the provision of communication services, doctors perhaps would be more accepting of that variety of modes of communication. Do you feel they would be more willing to accept facilitated communication?
Mr Beauregard: It is not so much a question of mode of communication. Autism seems to be a disability that affects initiation of communication. That is where facilitation comes in. There is something that has to do with the backward pressure that allows an individual with autism to initiate an appropriate communication or at least the type of communication or spelling out of letters that he wants. We have used various modes of communication in the past. With various people with autism, various methods seem to work. What we have experienced in the last year is a quantum leap with some people with autism using facilitated communication.
Doctors -- bringing us right back to physicians now and other health care specialists or health care givers who have a relationship with some of these people -- have an image or a certain level of understanding of them. They may believe they are developmentally disabled, and we are finding now that some of them have insight and knowledge that is extremely surprising even to parents, as well as to the care givers at Kerry's Place.
What is particularly astounding is that some of these people with autism have shown us areas of knowledge that are surprising because they have had virtually no education. They have had basic life skills education, but they have had no academic education. When we probe we find that much of their education they have absorbed from their environment, including Sesame Street and other areas. Some of them are coming up with social judgements which are far beyond anything we would have expected them to know or understand. Some of them are calculating the hypotenuse of a triangle when some of the parents did not know what the hypotenuse was. So this whole question of communication is now opening up issues that we have raised today.
The Chair: Ms Newman, Mr Weinroth, Mr Beauregard, on behalf of this committee I would like to thank you for taking time out today to come and give us your presentation.
COMMISSION OF INQUIRY INTO UNREGULATED RESIDENTIAL ACCOMMODATION
The Chair: I would like to call forward our next presenter, from the Commission of Inquiry into Unregulated Residential Accommodation. Good morning. Just a reminder: You will be allowed a half-hour for your presentation. The committee would appreciate it if you would try to keep your remarks to about 15 minutes to allow time for questions and comments. As soon as you are comfortable, could you please identify yourself for the record and then proceed.
Dr Lightman: My name is Ernie Lightman. I am the commissioner for the inquiry into unregulated residential accommodation. I would like to thank the Chair and the members of the committee for giving me the opportunity to come and talk with you for a few moments this morning.
The focus of my comments will deal with the Advocacy Act, Bill 74, and why I feel this bill is essential not only in the context of the work I have been doing with the commission of inquiry, but even more generally as a crucial support for the new approach to the welfare state, if I can call it that, that we will be entering into through the 1990s, a welfare state or a welfare society, as I prefer to call it, that is going to be governed by economic constraint and fiscal crisis. I might just add that my professional training is in economics, that my PhD is in economics, and that the fiscal issues have been very much in my mind through the last year or so while I have been doing this inquiry.
I would first like to talk about the context of the inquiry because I think this gives me the context for the comments. In November 1990 a man named Joe Kendall died in hospital after being assaulted by another resident at a place called Cedar Glen boardinghome. Cedar Glen was an unregulated boardinghome near Orillia, Ontario. Mr Kendall had been placed there by the Queen Street Mental Health Centre. There was a coroner's inquest after Mr Kendall's death. It was the longest inquest in Canadian history. It lasted 61 days and it came out with some 80-plus recommendations. Key among these recommendations was that the Premier should appoint a commission to inquire into unregulated accommodation. Two days later my appointment was announced in the Legislature by the Honourable Elaine Ziemba.
The commission began its work January 1, 1991, and the report is now essentially complete. We are in the final copy-editing, worrying about the semicolons and the commas, and we are very anxious to be done with that. The report will be available after production; production, I am told, takes a couple of months.
During the course of our work we released a discussion paper last March in which we set out some of the parameters and some of the boundaries for our inquiry. We held public consultations in six or seven cities around the province. We received 240 written submissions and we met with all the affected interest groups, some of them several times.
For our purposes, "unregulated accommodation" means accommodation that is not licensed, not inspected by the province of Ontario, accommodation in which there are no standards that are set by the province and where there is obviously no enforcement. The only exception is that certain provisions of the fire code, public health and the building code apply universally, and they would apply. But there are no particular government protections for the vulnerable adults who live in this type of accommodation.
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There are three major population groups: There are persons with psychiatric histories, there are persons with developmental disabilities and there are the frail elderly. Our mandate is limited to adults. Part of our task was to come up with a number, a population count, and of course I cannot tell you that today, but we do have a number.
During the course of the process, for the last 14 months, we have seen a lot of different types of accommodations that are offered within this broad framework. The accommodations include luxury retirement homes, where the quality of care, accommodation and services is absolutely exemplary, and range all the way to the other end, which is accommodation that is truly appalling. I have visited and seen some of these settings, and I am ashamed to acknowledge that these exist in Ontario in 1992.
Through the course of the inquiry we received telephone calls every now and then. We should have kept track of how often they came. We received telephone calls sometimes from MPPs' offices or their staff, sometimes from the press, talking about another "horror story" that had been uncovered: an old person who had been left in the bath too long and scalded, ex-psychiatric patients who were tossed out of their accommodations and left to spend the night on the street because they crossed the operator, persons with developmental disabilities who really have nowhere to live.
Unfortunately the bad news is that we were not able to offer these people any help. In certain cases the Criminal Code may be operative, but a Criminal Code test, as I am sure you know, is a very rigorous one. During the last several months there was in fact the first conviction under the Criminal Code at a rest home. I use the words "rest home" as a generic label for all this type of accommodation. This was the first time a Criminal Code prosecution had been successfully pursued.
The commission was faced, first of all, with defining or identifying a range of options, and then with that range of options recommending a direction to the provincial government. These options really ranged from doing nothing to doing as much as we could. Doing nothing basically would respond to some of the submissions that said that there are no problems or that the problems that do occur are basically isolated events and there is no need for any kind of massive governmental involvement, that existing remedies are sufficient.
The other end, the other extreme, would involve or entail a massive governmental intervention that, for short language, I described as creating a new set of nursing homes. It would involve setting standards, having inspectors, probably involve ongoing, per diem funding. Presumably these would be low level or first-stage nursing homes.
Obviously I cannot tell you this morning the direction in which we are going or the recommendations we have adopted, but I think the point that is really relevant for your work this morning is that whatever path I recommend, advocacy is absolutely essential.
If we were to pursue the minimalist path, if I can describe it that way, that would basically mean people should be left to take care of these problems on their own, and many people do not have the human resources, the financial resources, to solve their problems on their own. Many persons with psychiatric histories are effectively placed in pretty awful boardinghomes. They are placed there by hospital discharge planners who have nowhere else to place them. To do nothing, if that was the path we were to recommend, at the very least would mean there is some ethical obligation on the government of Ontario to give these people some assistance so that at least on an individual basis they can try to get out of these places and find somewhere more acceptable or more to their liking to live.
If we take the minimalist path, I think the idea of having supports of various sorts, which includes families for those who have families -- but many of the population I am dealing with have no families, and for these people assistance and support is absolutely essential.
If we went the other route, the maximalist path, if I can call it that, and created in effect a new set of nursing homes, I think we would all understand that even a system that involves huge numbers of state inspectors, aside from being very expensive, does not always produce the desired results. I had a large number of people come and talk to me about problems in nursing homes, because they were not aware of the legal distinction between a nursing home and unregulated accommodation, but the basic issue is that a system, such as that of nursing homes, that relies on inspectors cannot have inspectors at all times in all places, and the problem remains, what happens when there is no inspector there?
We had a long discussion about this particular issue in terms of trying to ensure a minimum nutritional standard for the food in the lodging homes in one large city, that there was no way through a system of governmental inspectors that we could be ensured that people's minimum nutritional standards would be met when inspectors are not there. Of course, the idea of having an inspector on site in every rest or retirement home in the province at all times is economically a non-starter and it is not desirable anyway.
I think the central point in terms of the work I have been doing is that a system of advocacy is absolutely essential, regardless of how we choose to respond to these kinds of social problems. I am defining, then, advocacy as a necessary condition. It is not necessarily a sufficient condition, but it is a necessary condition for whatever else we are going to try and do, assuming we want to do something.
I would like to take a couple of minutes to put this discussion of advocacy within a broader historical context. In real life, when I am not being a commissioner, I am a professor at the University of Toronto. I talk to my students about evolutions in the welfare state. I am certainly not going to put you to sleep, like I put my students to sleep, with a two-hour lecture, but I will give you a five-minute overview of how I see the historical development of the welfare state.
I see that there have been three phases to the post-war welfare state. The first one, beginning in 1945, began with the work of Beveridge in Britain and the Marsh report in Canada, and this was the building, the initial creation of the welfare state. It led to all the major social programs that emerged in the post-war period: family allowance, old age security, UI, hospitalization. This phase reached its culmination in the 1960s with the Canada pension plan, Canada assistance plan and medicare. The premise that underlay this first stage I think was that massive and direct governmental intervention was both necessary and appropriate to ensure that people's needs were met, and that no other approach would work.
Beginning in the mid-1970s, when we had the first traces that there was a fiscal crisis and that maybe an overly simple embrace of Keynes was not the answer, we began to cut back, and we are probably -- well, not we are probably; we are definitely still in this second phase, where the goal is simply to cut spending. At first we kept many of the forms of the welfare state and we simply starved the programs by not funding them adequately. More recently, of course, we are making major structural changes in some of the programs themselves. But I think the important point in terms of this second phase of the welfare state is that we cared less about the consequences of our action and we cared more about the cost savings that were essential.
The best example of this, and one I am sure you have had presented to you over and over again, was the shutting down of the large psychiatric hospitals. Instead of ensuring that people would be able to cope when they went out into the community, all we cared about was shutting down the hospitals. Initially it was simply to save money. Later we had these clinical rationalizations that had to do with normalization and theories of this sort. But at no time did we ever put in the time, the money and the resources to ensure that people would be able to cope.
The result is that we turned people out of the psychiatric hospitals; we gave them inadequate family benefits, a Gains-D cheque, a firm handshake and wished them luck. The result was the kind of problems I have had to deal with for the last 14 months. The result, if I can be Toronto-centred, was the squalid housing in Parkdale. I have discovered that there is comparable squalid housing in the catchment areas of many of the other psychiatric hospitals around the province as well.
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These are not discrete historical events. They overlap. But the third stage of the welfare state -- I describe it as a welfare society rather than a welfare state -- really began, I suppose, with the O'Sullivan report. The Social Assistance Review Committee report called Transitions fed into this. The work of the Graham committee with community mental health was in this line and my report will follow in this broad tradition as well. This basically builds on the weaknesses of both the first two models. It accepts that today in 1992 we can no longer afford the new, big, welfare measures programs such as we were able to introduce after the war. Maybe those programs did not deliver all that we hoped for. Maybe our expectations of them were unrealistic. That is my personal view. In any case, the free trade agreement probably would not allow us to develop new major welfare state measures if we wanted to, but I think the bottom line is that we do not have the money or we are not prepared to devote the tax dollars to developing those programs.
I think it also builds on an understanding that this second phase of the welfare state, what we could call the abandonment model, does not work either and that the idea of simply putting people out on the street and wishing them luck is not a humane or compassionate response for a relatively affluent society.
What this third phase tries to do is take the second phase and make it work. It can also be called an "empowerment" model. I know that is a word that is very much in vogue. I saw in the weekend paper that empowerment is the re-election theme of the Major government in Britain, so it is all over the board here. But I think the idea of it is to try to give people the resources and the capacity so that they can function within the economic market, not to abandon people but to give them the resources. These resources include financial resources, but it is more than financial resources. It also includes human resources and human supports and assistance, so that people can function in this market economy in which we live.
The assumption of course is that with support, with assistance, far more people are capable of functioning and coping on their own than we traditionally thought was the case, but it also recognizes that people do need these supports. To repeat myself, the two key supports are money, which is why the reform of social assistance is so important, but the second thing that is really essential is that people must have human supports. Giving people money alone is not the answer. People must have assistance and support to exercise choices, because that is really what we are talking about. We are talking about enabling people to make choices about how they want to live their lives, where they want to live, with whom they want to live.
Purely in value terms, I suppose, this is more desirable from my viewpoint. People should be encouraged and assisted and supported to make choices about how they want to live their lives. This is far better than having the hospital discharge planners do it alone without the people's involvement. Indeed, in many areas it is better than having inspectors from the nursing homes branch or something of that sort come in and decide what people's needs are or should be.
To the extent you can accept this as a broad, sweeping overview of 45 years of the welfare state in Canada, there is a certain historical inevitability to the development of a system of advocacy, to give people supports. The alternative, to repeat myself, is to go back to the shutting down of the psychiatric hospitals and just leaving people to cope. We have the counterpart of this shutting down of the psychiatric hospitals in many of the unregulated accommodation settings I have seen. The quality of life experienced by the people is not radically different from -- well, it is the same people, so obviously the quality of life would not be different.
I am aware of the time here. I would like to make a couple of very specific suggestions and then perhaps respond to some questions rather than pretend I am a professor and talk until one minute before the bell rings and everybody gets up and walks out.
I have really just two very specific suggestions. The general comment is that I do see a system of advocacy -- to repeat the obvious -- as absolutely essential. I think Bill 74 is a very important bill and I do not think we can delay it. I do not think we can wait. I think it is important that it be introduced now. Much of the content of my report and much of the content of a whole variety of other initiatives that are taking place depend crucially on a system of advocacy being in place.
There are two specific suggestions I would like to make. One is that I would like to recommend that the implementation of the other two bills, Bill 108 and Bill 109, be delayed. In doing this I align myself with many community groups. I was quite concerned when I read one of the documents that said the Ministry of Community and Social Services and the Ministry of Health have an estimated 25,000 to 30,000 people for whom guardianship is going to be necessary the day these bills come into place. I do not know whether these are official ministry figures. They were given to me on a secondary basis, but if they are correct I think it is immediately self-evident that if the bills are all enacted at the same time and we suddenly have 25,000 to 30,000 people for whom guardianships are necessary, the whole advocacy initiative will become the handmaiden of Bills 108 and 109. I think it is really essential that the Advocacy Act be given a chance to get up and running before the other bills kick in.
The other issue in the context of this is that to my mind advocacy and guardianship are substitutes; they are not complements. It may be that if the advocacy initiative gets going, a lot, or some -- we do not know how many -- undefined share of that 25,000 to 30,000 people will not need guardianships; advocacy will be a far more effective and a far more empowering substitute.
The other specific comment is really to commend the provisions in the bill to contract with community groups to deliver some of the advocacy services. I think this is a really cost-effective and desirable way to go. It is also crucial in this context that there be a separation of service provision from advocacy. One cannot do both at the same time.
I am not really in a position to discuss the line-by-line details of the three bills, because I have not really focused on those in the context of my work. But in the time that remains I would be glad to answer any questions or respond to any comments.
Mrs Sullivan: I wish we had more time here. With Mr Lightman's report coming out and his indication that advocacy is key to his report, I think a number of questions arise. I kind of want to give a hint of where I see some of the questions. One is that we have no indication of how your report will integrate with the long-term care plans of the government. I do not know if you want to speak to that now or latterly, but clearly that is a matter of some importance in these issues.
Mr Chair, since this is the last intervenor before the lunch hour, could we take a couple of extra minutes with Mr Lightman? Would the committee give us that permission?
The Chair: Do we have unanimous consent? We do.
Dr Lightman: I would rather not discuss in detail how the report fits in with the long-term care initiative except to indicate that it is an issue we discuss in some detail. We do discuss our recommendations specifically within the context of long-term care, but I hope you understand that I cannot give you the details this morning. That pre-empts the report.
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Mrs Sullivan: I am disappointed in that, because as we are looking at these bills they will have a substantial effect on the implementation of long-term care. Your comments as an intervenor before this committee would be useful.
You have spoken about people you have dealt with who are vulnerable, whether they are psychiatric patients, developmentally disabled or frail elderly who live in retirement homes, rest homes and boardinghouses. You have indicated that you feel those people need either money or assistance to make choices and that you see assistance being available largely through advocacy. We have a bill, however, that makes no definition and does not provide any outline of what an advocate does. Do you think that is adequate?
Dr Lightman: First, I would like to correct that I was not saying this assistance would be provided largely through advocacy. In many cases where there is a family or other private arrangements, I do not think the advocacy would be much of an issue. I am saying that advocacy is essential particularly for those people who have no other mechanisms at their disposal.
I think it is quite appropriate that the Advocacy Commission define its own ground rules about what advocacy means. I have had a chance to look at the three bills only in a very cursory way, but it seems to me that there are reasonable safeguards within the bills in terms of setting boundaries. It is hard for me to imagine a situation where advocates are going to be wandering off, in a sense, looking for trouble. If there is, for example, an arrangement where a family and the individual member of the family are both quite happy with an arrangement, it is hard for me to understand why an advocate would want to go and intervene when there are so many other unmet needs. The advocates will have to define priorities and I assume they would define their priorities in those areas where they see the greatest need, and where the greatest needs are brought to their attention.
Mrs Sullivan: I have real concern in that you have come before us as an expert. You have indicated that you are not particularly familiar with the intricacies of the bills. We are very concerned when you suggest there is adequate protection in Bill 74 in relationship to the activities of advocates. We are very concerned indeed that there is no accountability included in the bills for the work of advocates. There is no definition of the work of advocates and the advocates have been given unprecedented powers of entry to do what you have just indicated you did not think they would do: to look for trouble. We all concur that an appropriate role for an advocate is to look for trouble, but in what circumstances, where, how, according to what public standard should the advocate indeed be looking for trouble to protect the vulnerable person?
You have also indicated to us, using your words, to move -- I am sorry, I am all over the place, but I just think this is a problematical presentation. You have suggested that massive governmental intervention through first-stage nursing homes, if you see that as a program, would require an inspector in every rest or retirement home.
Dr Lightman: No, I said only carried to the extreme. I was not saying that.
Mrs Sullivan: Well, carried to the extreme. Have you heard some of the testimony before the committee that would indicate that with these bills in place, there would have to be round-the-clock advocates in every single hospital, nursing home or care facility in the province?
Dr Lightman: Clearly that is not going to happen, particularly if the advocacy bill goes forward first. If there are going to be 150 of these advocates -- and I gather that is the figure, by definition, by arithmetic -- it is not possible that there will be one in every institution.
Mrs Sullivan: Then the legislation will fail.
Dr Lightman: No.
Mrs Sullivan: You cannot do the Consent to Treatment Act with 150 advocates.
Dr Lightman: I am not here to talk about the Consent to Treatment Act because I indicated at the outset that I think --
Mrs Sullivan: You cannot do the others.
Dr Lightman: I do not see how the legislation will fail. I do not see how the Advocacy Act will fail in the absence of an advocate in every institution. The essence of it is that to a large extent I would assume the advocacy would respond to inquiries. With 150 people trying to deal with some 60,000 to 70,000 people in extended care beds, plus an undefined number in the accommodation I am dealing with, plus, plus, plus, it is hard for me to understand, just logically and intuitively, why they would go looking for trouble, to use that phrase. It just does not make sense to me.
Mrs Sullivan: Your understanding of the Consent to Treatment Act is clearly different than ours. Every health practitioner is required to do a capacity assessment in order to obtain consent to treatment. Subsequent to finding a person incapable of consent to treatment, Bill 109 requires that an advocate be brought in to provide rights advocacy, statutory rights advice, to that person. In order for treatment to proceed, the rights advice has to be given quickly, and every single health practitioner, group or agency that has been before the committee has indicated that the advocate would have to be on site.
I will tell you that if you look at all the institutions all the time, when Mrs Ziemba speaks about 150 advocates in the province, she is dreaming in technicolor. Frankly the larger problems you are talking about will simply not be handled no matter which bill comes in first.
Dr Lightman: I substantially agree with what you are saying, which is why I am recommending that Bill 108 and Bill 109 be delayed in their implementation. If they do all go forward at the same time, the advocates will go crazy trying to deal with all the applications for guardianship. That is why I think the implementation of the bills should be delayed.
Mrs Sullivan: We will look forward to your report. We have a lot of other questions to put to you not only about this legislation but about your report as well.
Dr Lightman: I look forward to it.
Mrs Sullivan: I feel badly that we cannot do it at this time, that we do not have the report for your appearance in front of us. I feel there are a lot of unexplored questions that are a matter of very real public importance.
Dr Lightman: I look forward to the opportunity to discuss it with you later.
Mr Sterling: I am very intrigued by your presentation in some regards and somewhat concerned with regard to some of the directions that you anticipate and recommend we go in Ontario in the future.
First of all, I agree about the deinstitutionalization of some of our residential psychiatric institutions. I think it has been extremely mean to the residents. I think in a lot of cases the homes you have been dealing with have not been producing an equal level of happiness for those people. It has been much less than they were receiving in the institutions. These people have not even been given the choice of returning to those institutions if they so choose, which I find weird in terms of political reasoning. I think what has been tried over the past 10 years has been for all of us to be politically correct and to deinstitutionalize people regardless of tracing these people as to whether they are happy.
I agree with you very much in terms of your assessment of that, but one of the hard facts we have to deal with is that the resources are limited. My concern is the efficiency of the system so we are able to provide to those who are vulnerable in our society the most bang for their bucks. My concern about bringing in another level of "social worker" who perhaps is not providing a hard service -- shelter, food, clothing, whatever -- is that you are going to take away from those hard services that we can provide. Whatever you come up with, are you going to deal with the efficiency argument?
Dr Lightman: Yes, I am, and I could make a couple of comments about it. It seems to me that the cheap option, the least costly option, which is to do nothing, is what led to the problem with the shutting down of the psychiatric hospitals. From my viewpoint, in terms of my own value system, the question of not spending money is not on the table. The question is, precisely in the terms you said, how do we spend it so as to get the best bang for the dollar? How do we get the most cost-efficient use of the dollars we spend?
It is my sense that a system that enables people to make their own decisions, which is what advocacy is intended to do, is going to be much more efficient than any other alternative I have considered. A system of advocates that helps people to make their own decisions around food and clothing and the other examples you gave is going to be much less costly to the provincial treasury than having another layer of social workers go out and actually give them the food or give them the housing. The social work model is a very inefficient one. I see this as an alternative because one advocate can help a lot more people to arrange for their food, if we want to use that example, than if he or she were directly providing the food. The direct provision is very inefficient. The way I see this, one advocate can deal with a wide array of clients or residents or individuals and can do so in a lot more efficient way than any other system of provision.
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Mr Sterling: Can I go on with another part of your presentation I am a little concerned about? I think it was touched on when you were talking with Mrs Sullivan about the number of advocates and the number of clients and that kind of thing.
This committee has talked about levels of advocacy over the past public hearings that have gone on for four or five weeks. There has been a different perception, in my view, on the part of people who have come in front of the committee as to what these advocates are going to be able to do. The people who in general have been supportive of advocates view them, I believe, as friends of the vulnerable person. In other words, they are going to be there for these people who in a lot of cases have nobody else to rely on.
I call my previous example the first level of advocacy, something that I think an adult protection worker may be providing in a lot of our communities in Ontario. I believe there are 175 of those in this province. The second level of advocacy deals with the more difficult issues a vulnerable person might face. The trigger mechanism, if there are only 150 or even twice that number in Ontario, has to be something that is much more formal. In other words, under this system or under this bill I do not view an advocate as being able to go into rest homes on a continual basis. I do not believe he or she would ever arrive at a rest home unless called by someone. Are you viewing this advocacy system as advocacy at that second level?
Dr Lightman: To be quite honest, I have not thought it through. I had not thought of it previously in terms of those two levels. I just make the general comment that the Advocacy Commission will have to decide its priorities because the need, the demand, will be so much greater than the supply is ever going to be that they will have to define priorities. We hope the priorities will not simply respond to squeaky wheels. That is the wrong way to allocate resources. I would assume that one of the first tasks before the Advocacy Commission will be to define a set of priorities and decide whether level one or level two would be the most appropriate or the most essential.
If I can make a personal comment, I teach in the school of social work at the University of Toronto and am very aware of the difficulties or dangers that are inherent in creating a person called a social worker. Call them God, make them omnipotent and they will go out and solve everybody's problems, and in all too many cases they wind up doing nothing. I have not had any formal conversations on this topic, but informally I have some former students who have been involved in parts of the legislative drafting and they are very aware that they do not want to create simply another system of social workers here. That is not the intent, but of course you cannot guarantee the outcome.
Mr Sterling: In your example that you raised about a person in one of these homes who wanted to get out of the home or wanted to seek alternative accommodation, I cannot see, number one, how that person is going to know there is an advocate around and, number two, whether an advocate is going to have time to be concerned about the accommodation of this individual. You are quite aware of what the adult protection service worker does. Would you not argue for an expansion of their role or a doubling or tripling of their numbers rather than setting up another bureaucracy like the Advocacy Commission?
Dr Lightman: The APSWs deal only with persons with developmental disabilities and their clients.
Mr Sterling: Expand their role. According to their testimony in front of this committee, they spend about 40% of their time on advocacy issues for their clients. Would it not be more fruitful, in terms of the protection of the people whom you talking about who are --
Dr Lightman: Some of whom are, yes.
Mr Sterling: Yes. A lot of them are from that area. Would it not be more fruitful for the government to expand their role?
Dr Lightman: I do not know enough about the details of how the APSW scheme works to comment on that.
Mr J. Wilson: Thank you, Dr Lightman. I know you are well-intentioned to come before this committee and promote the principle of advocacy, but in doing so and not having studied the bills, it is as if you come and support the government's position.
We are not dealing here with the principle of advocacy, because we are long past that in this province. We have agreement among the parties that the principle is important, but we are dealing with the provisions and the content of specific legislation. Every time we take a run at the content of that specific legislation, we as politicians face the prospect that some group will misinterpret it that we are not in favour of advocacy. Mr Sterling and Mr Jackson have been champions of this for years in terms of talking about the institutionalization and the need for follow-up and all kinds of things dealing with advocacy.
Having said that, I am very interested. I am sorry I missed your course in the evolution of the welfare state when I was at the U of T. I am sorry I missed it because I do not think I agree with you.
Dr Lightman: You could attend the course; no problem.
Mr J. Wilson: Thanks. You are objective, anyway.
It seems to me that what we do not talk about in this stage of the welfare state -- we have never talked about it in the 18 months I have been in Parliament. My party has talked about it, but we never talk about the opportunity that government should be creating out there for people. The greatest dignity I believe you can give a human being in a free market is the opportunity for employment. All we ever talk about is, how can the state intervene in people's lives or how can the state set up another layer of bureaucracy or program to so-called help these people out? In the process, you know very well as an economist that resources are limited. This legislation proposes to spend anywhere from $46 million just for the public guardian and trustee's office -- that is from the horse's mouth -- and there are the untold millions it will put on the current health care system.
Where I agree with some of my colleagues is that I do not see how setting up another layer of advocacy services is all that helpful. Should we not be saying to the government, "Look, you should get taxes in line; the province works best when there is opportunity for employment"?
On that, I am interested in reading your report. I just wonder if you can tell us today, to what extent does the high level of unemployment play in terms of people being ghettoized in these unregulated settings, or to what extent does the lack of community resources out there now play? Are we really helping them by providing them with an advocate who may say, "By the way, you need new housing. You need a job. You are capable of working"? But that is fine; you have added another layer of voices called advocates. But there are not the jobs; there is not the housing; there are not the community resources. So I would ask for your comments on that.
Dr Lightman: Clearly the availability of jobs and the availability of meaningful employment opportunities would go a long way towards solving the problems, if we can call them that, of a vast array of people. But if I had issued a report that simply said, "You have to go out and create jobs," the report would have been consigned to the archives very quickly. At the same time as one should be attempting to create jobs, one also has to deal with the present situation: that the economy is in very bad shape and that the most marginal members of the workforce are the last to be hired, the first to be discharged. When we now have unemployment levels that are hitting well into the middle class, it is perhaps naïve in the short term to talk about massive job opportunities or job creation opportunities.
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Mr J. Wilson: I do not think it is naïve at all. The spiral we are on now is clearly not the way to go.
Dr Lightman: I could not agree more. I completely agree.
Mr J. Wilson: In your commission, I assume, your report is going to identify probably a lot of what we already know from the horror stories we have heard. I gather the purpose of your commission is to bring forward to politicians and the public the real needs that are out there, but I just disagree with you in terms of adding another layer of advocates to address those needs.
Dr Lightman: I would view the advocates not as being job counsellors because they are not intended to provide direct service.
Mr J. Wilson: Jobs are just one example of the need out there.
Dr Lightman: Okay, but it is a very important one. An advocate should be in a position to assist any person living in a boardinghome or anywhere else, who has any thoughts about wanting to work, in heading towards training or whatever else. I am not naïve about the prospects of training or the outcomes of training or employment, job creation. The economic forecast for this country for the next few years is not terribly optimistic. I certainly endorse everything that the provincial and the federal governments can do to expand the economy. I am in favour of stimulating the economy, and I do not believe the economic policies that have been followed for the last decade have been in any way constructive or productive for anybody except a very small number within the population.
But I have to, in a sense, take as given, at least in the short term, that the unemployment situation is going to be bad, is going to remain bad. What an advocate can do is assist anyone who wants to make whatever efforts they can. They can direct them into the appropriate avenues. They can be an information provider. That is an extremely important function.
Mr J. Wilson: I will tell you that is what our office is to do, as MPPs, every day.
Dr Lightman: Sure.
Mr J. Wilson: You go to direct someone, and there is nothing there to direct them to.
Dr Lightman: I quite understand that.
Mrs Sullivan: How do you see the difference, then, between an advocate and a social worker?
Dr Lightman: I am reluctant to answer that because I will get in trouble with my department. I think too often in practice -- not necessarily in theory, but in practice -- social workers fall into the trap of making decisions on behalf of their clients. We have to spend a lot of time in our educational process persuading social workers that even though they are better educated in many cases than their clients and in many cases maybe they do know the answer, you cannot simply go in and say, "Well, this is how you're going to run your life, and this is what you're going to do." It is a trap that many social workers fall into, and I think one of the important functions of an advocate, however it is defined -- I think it is inherent in the definition of "advocacy" -- is that they will not go in and tell people how to run their lives, that they will not make decisions on behalf of people, but rather they will assist people to make their own decisions whenever and to the maximum extent possible.
Mrs Sullivan: We might be more confident if there were any definitions of "advocacy" in the bill.
Dr Lightman: Yes, I understand your point.
Ms Carter: Dr Lightman, you have reminded us of the original reasons for the Advocacy Act, the impetus behind it, and you have reminded us of the people who have no family or friends. We have constantly been told that this is going to interfere with family, interfere with people, care givers and so on, who are trying to help somebody. But of course the point is that not everybody has that. Could you give us some examples of the kind of problems you have uncovered in your research, in your experience, where an advocate is needed?
Dr Lightman: Probably an advocate is needed in every problem I have had drawn to my attention. Let's go back to this example of substandard quality of food. There is a requirement, as a condition of getting general welfare assistance funding for hostels in this community, that a minimum nutritional standard be met. I was told -- not I; the community was studying this. Their own report they had commissioned showed that when inspectors were present, the food met the minimum nutritional standards. When inspectors were not present, the food did not meet the minimum nutritional standards. Their own report even had a telephone call from someone who worked in the kitchen of one of these homes who was reporting on this.
If there was an advocate in that context, an advocate would be able to direct the residents to some appropriate avenue or some appropriate outcome to ensure that the food not only met the minimum nutritional standards, but maybe that it also tasted good and that they would have some say in setting menus and deciding what they were going to eat so they would not get the same stuff every day.
There was a particular problem about milk, because the minimum milk standard could be met with powdered skim milk. The report showed that in some cases, even this minimum standard was often being watered down, like, below the level. Many of the residents said they would like to have 2% milk, and at present there is no mechanism through which they can articulate this request. All they can do is talk to the public health nurse or the inspector who comes by and ask him or her to act on their behalf. It is totally disempowering to the residents, because they have no direct avenue to express their wishes. All they can do is ask the --
Mrs Sullivan: What would be the difference between the role of the health official and the advocate?
Dr Lightman: The public health official is there to determine whether or not the minimum standard is met, presumably. The advocate would not be there to measure whether or not the minimum standard is met; the advocate would be there to assist the residents to identify an appropriate mechanism through which to redress their concerns.
Mrs Sullivan: The advocate would then go to the public health official.
Ms Carter: Yes.
The Chair: Excuse me, Ms Carter has the floor.
Dr Lightman: No, the advocate would not go the public health official. The advocate would direct the residents to go and would assist them to get there, in a sense.
Ms Carter: So one person's complaint could lead to something that would solve a problem that was institution-wide, as it were. Do you feel that Bill 74 adequately provides for people to have support to make their own choices, or do you think it could be amended in any way that would strengthen that function?
Dr Lightman: No, I think it is a bill that goes in the right direction. I do not have specific recommendations, except for the delay in the implementation in Bill 108 and Bill 109 to give the advocacy bill or the advocacy program a chance to get going.
Ms Carter: Another thought that was suggested by what you said just now is that where you have services given for profit and people are tempted to maybe do things in a cheap way rather than in the way that is best for the customers, sometimes we do need legislation and so on to keep the balance between the private enterprise on the one side, which is desirable in itself but which may not always give the best possible results, so the needs of these people are taken care of.
Dr Lightman: I do not think non-profit settings are completely devoid of problems. I do not think we can simply say that the non-profit sector is always the good guys and the for-profit sector always the bad guys. It does not break down that way.
Ms Carter: But an intervention of this kind could just help to keep the balance.
Dr Lightman: Perhaps.
Mr Wessenger: I was just interested in your suggestion concerning your problems about -- I gather your concern is that you do not want to see advocacy services involved heavily in the other two acts and that is the reason you wish the delay. Is that correct?
Dr Lightman: I am not sure I would even necessarily want to take it that far. I think it is to give the advocacy program a chance to get going before it gets swallowed up in these other two. I do not really know whether if I were drafting the bill -- which I am not -- I would want the advocates involved with those other two bills.
Mr Wessenger: That was really my next question. You would not want to express an opinion on whether, for instance in Bill 109, one of the ways of dealing with it might be to reduce the role of the advocates and --
Dr Lightman: I am aware that those suggestions have been put forward and that would be another possibility.
Mr Wessenger: Would that be acceptable to you?
Dr Lightman: Yes, the means is of secondary importance to me.
The Chair: Mr Lightman, on behalf of this committee, I would like to thank you for taking the time out this morning and coming and giving us your presentation.
Dr Lightman: Thank you for your time.
The Chair: One quick announcement: The subcommittee meeting will not be held later this afternoon; it will be held at noon tomorrow. This committee stands adjourned until 2 o'clock this afternoon.
The committee recessed at 1255.
AFTERNOON SITTING
The committee resumed at 1414.
ISOBEL HILL
The Chair: I call this committee back to order. I would like to call forward our next presenter, Isobel Hill.
Mrs Hill: Good afternoon.
The Chair: Good afternoon. Just a reminder that you will be allowed a half-hour for your presentation. The committee would appreciate it if you would keep your remarks to about 15 minutes to allow time for questions and comments from each caucus. As soon as you are comfortable, please identify yourself for the record and then proceed.
Mrs Hill: I am Isobel Hill, the mother of a young fellow who has been diagnosed as schizophrenic, and I am speaking as an advocate of a lot of schizophrenic people. Hopefully, you will be an advocate for me in the right places to get some changes made.
I begin with an introduction to myself so you will understand my concerns, experiences, studies, the authorities I have consulted and then you can judge for yourself the validity of my conclusions.
Four and a half years ago, our son's periodic episodes of violent destructiveness took a turn for the worse when one day he hit out at me and floored my husband. Terrified, we immediately called the police. When two officers arrived and told Brian to talk he floored them both in one second. The officers had to fight for their lives to get him handcuffed. There was no doubt in their minds that Brian was mentally ill and a danger to others. They took him to the York-Finch General Hospital. Here he was sedated with Haldol and kept under observation for three months until there was room for him at the Queen Street Mental Health Centre.
In this way, we escaped all the problems of other parents who experience difficulty in getting their young people committed for help. I sympathize with these other parents' frustrations and hope something can be done to make things easier for them.
At the Queen Street hospital, Brian was assessed as schizophrenic, placed on the second floor for treatment and shortly after was moved to the fifth floor for long-term treatment. In the beginning I visited him almost every day and so had ample opportunity to observe quietly the other patients too, the ones who tried to escape and the ones on the outside phone begging desperately: "Get me out of here. I don't belong here. They're doing awful things to me."
For myself, I had a lot to learn. I admired the work of the staff. They were very cooperative in explaining their procedures and expectations and I cooperated with them fully. In time, I cut my visits to three times a week. I overcame my fear of the other patients when I learned that if they approached me, all I had to do was to be completely honest with them. In this way I became personally interested in the progress of a number of the other patients. But again I heard the same refrain: "They are doing awful things to me. Pray for me."
On the advice of the staff, I joined the Ontario Friends of Schizophrenics, and June Beeby said we should read all that we can about this condition so that we can speak intelligently to the authorities.
This I have done. I have clipped every scrap of new research published in the papers. I have followed this up by reading books on this research and attending forums at Queen Street, the Clarke Institute of Psychiatry and other places to listen to the people engaged in this research. I have also discovered references to schizophrenia in some of the most surprising places.
One thing that was recurrent in this was the discovery of damage to the limbic system in the brain of many schizophrenics, but oddly there was no follow-up as to why this damage occurred or how it could be corrected.
Fuller Taylor's work with identical twins who have the same DNA appears to negate the theory of any hereditary factor. Barbara Ann Brennan, who cures schizophrenics, writes that it is the hardest of all diseases to cure because the trauma that causes it occurs during, before or shortly after birth.
Another promising study reported that the blood flow in the brain was unevenly distributed, with some parts receiving inadequate supplies, but again no question of why this should be so or how to get the blood to flow properly again.
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While all this visiting and studying was going on, my husband and I kept one day a week for our own benefit, our regular visit to a very gifted chiropractor-naturopath because of a very severe sexual dysfunction. A number of years previously I had joined an excellent sensitivity group to learn more about my feelings. From this, I graduated to a primal therapy group to learn more at a deeper level. One day, mention was made there about a chiropractor-naturopath who could make our primaling, as we called it, deeper and easier.
During my first weekend in a primal therapy group I was surprised to re-experience being stuck in the birth canal. It was terrifying and painful. "I'll surely die if mother won't open up and let me out of this pressure cooker." When I finally did manage to wriggle out between Bill's bony ankles, which I had experienced as my mother's pelvic bones, I realized for the first time in my conscious life that I was me and not part of my mother.
In a few months' time I realized I did not need the primal group, but could get all the help I needed from this wonderful practitioner. But what was he doing to me? Why was I getting these memories? One day I was aware that with his manipulation he was gradually getting blood to flow through different parts of my brain, that it was the opening up of my brain that brought back memories of the traumas that had caused the blockage in the first place. Now this continues to be a terrific learning experience, bringing with it great improvements to my health.
Returning to our son Brian: As I learned more, I started being very concerned about the so-called side-effects of the neuroleptic drugs he was being given. Reading about them in the pharmacopoeia, I realized that these drugs damage every life support system in the body. As I saw these effects one by one occurring in him and in the other patients, I became alarmed. How can these neuroleptic drugs make his brain function better if they are making his body sicker? I stopped cooperating with the hospital and started cooperating with Brian's inner being that had been trying desperately for months to make me understand how he suffered from the effects of those drugs, but I had not caught on to his message. We got his weekend leaves extended a day so we could take him with us to our chiropractor-naturopath. Brian's reaction while in the hospital was, "They do the best they know how," but his reaction to our therapist was, "Boy, he knows a lot."
He has been going with us now slightly over a year and each weekend we notice a subtle change for the better. Now his medication is being gradually reduced. His complexion has improved; he can breathe through his nose again. Some tensions are leaving his face. He sometimes laughs. He is taking longer and longer walks. He is making more decisions on his own, like when and where to get his hair cut, and he is at ease when we take him into a restaurant. That may not sound like much, but if you knew him a little while ago, it is a big change.
Six months after he started going with us he was moved from the hospital to a habitat home and he attends the outpatients program at the Queen Street Mental Health Centre. We are very grateful for all the efforts of the countless number of people who have made these supports available to us and now I would like to return something to help other patients.
There are many causes for the hallucinations and illusions typically lumped together and called schizophrenia. An overstressful life situation may bring about a single psychotic episode, which may not recur. An imbalance in the pancreas causing hypoglycaemia can be a contributing cause. This can be controlled with an appropriate diet and the total avoidance of sugar. Dr Hoffer's group, the Canadian Schizophrenia Foundation, in its research has found that various B complex vitamins can greatly reduce schizophrenic signs and symptoms. Dr Carol North tells how an early trauma caused a problem for her which was cleared away by kidney dialysis. Spiritual healers believe that possession by a discarnate spirit can also cause the hearing of voices and great confusion and that this spirit can be exorcised by a spiritualist.
Yet all these different types of schizophrenia are treated by neuroleptic drugs. Now, some patients and their parents are quite happy and content with the use of the neuroleptic drugs, which reduce the amount of dopamine in the brain. I do not want to say anything that is going to upset any parents and patients who are very satisfied, but for the hard-core schizophrenic person with a damaged brain, something else is needed.
Could it not be possible to set up a ward at the Queen Street Mental Health Centre under the jurisdiction of a chiropractor-naturopath where hands-on treatment could be given, such as our son accepts gladly and finds so beneficial? The facilities are perfect. It would need the staffing of special persons familiar with the reactions to this type of treatment who would not be upset when a patient, working through the trauma of circumcision, wants to walk around naked with a bandage on his penis and a potty in his hand crying, "I can't wee-wee; it hurts too much," or when a patient curls up in the foetal position and cries with the voice of a newborn infant in the infants' ward of a hospital out of loneliness for her mummy. The gymnasium could be used to work out anger safely. The swimming pool, if warmed a bit, could be used to re-experience the pleasures of the early stages in the womb, where there is lots of room. Appropriate diet, vitamins and herbal remedies could be administered. The stay in the hospital would be only long enough for the patients to learn how to cope with the flow of releasing emotions safely on their own, coming in as outpatients to continue their healing. The end results would be people who are loving and who can work at high-energy jobs, whatever their bent is, instead of being a drain on our society.
My material, which has been kindly duplicated for your benefit by the staff here, contains my original proposal to the Queen Street Mental Health Centre in May 1989. It contains my earlier research and includes a diagram of Wilhelm Reich's concept of the cause of all disease, contrasted with perfect health.
It also contains my statement prepared for a forum at the North York Civic Centre on the proposed amendments to the Mental Health Act in the spring of 1990. This contains a printout of that research on the flow of the blood in the brain, which you can see there, and some sketches from a chiropractic handbook which show how adjustments to the spine benefit every life support system in the body, and you can see with the circulation, even to the circulation into the head.
There is a copy of the brochure of the Ontario College of Naturopathic Medicine to give you a realization of how thoroughly and broadly these practitioners are trained.
There is an excerpt from a book by Dr Deepak Chopra, and if you find it difficult to accept the new ideas presented by me, you are not alone.
There is a picture from Dr Frederick LeBoyer's book, Birth without Violence, and I want you to note particularly the terror, the agony and the rage in this baby's face. A baby who comes into the world and screams and cries and kicks like that is called a really healthy baby; that is a real lusty crying. I say that shows a child, a baby, an infant, who has been damaged badly and is furious. With my son's anger and his increasing violence, you put that violence in that baby's being into the body of a 40-year-old man, and that is really something.
You have an article there by Frank Jones on the pain of infant circumcision, and I think there is an article by Sondra Ray, who shows how your own mode of birth affects your life. I do not know if that one got in. And I brought along some books you might be interested in seeing.
Now that I have spread my bread upon the waters, I am ready for your questions.
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The Chair: Thank you. You have about five minutes each.
Mrs Sullivan: Mrs Hill, I was interested in a portion of your testimony that indicated that when you became aware of some of the effects your son expressed to you about the effects of the neuroleptic drugs, to quote you, you "stopped cooperating with the hospital." What did that mean? Did that mean you ceased to give consent for treatment with neuroleptics at the hospital?
Mrs Hill: It means I started listening to Brian. I started listening to my son, and in his own convoluted way he was expressing to me the pain he was going through with these drugs, so I arranged to get him to go to a chiropractor-naturopath. That is what I meant.
Mrs Sullivan: So in terms of your own relationship with the hospital, there was no effectual change in terms of --
Mrs Hill: I have very good relations with the people in the hospital, yes. They are good people. As Brian says, they do the best they can.
Mrs Sullivan: Good. The next question then is, when Brian began the naturopathic treatment, that was an adjunct to continuing care at the hospital until he became an outpatient, is that right?
Mrs Hill: That is right.
Mrs Sullivan: During the period he was receiving that care, was there any necessity for consent to be given for that care from the chiropractor?
Mrs Hill: I was told they did not object to chiropractors. They had nothing against chiropractors.
Mrs Sullivan: Was the chiropractor obliged to make an assessment of his capacity?
Mrs Hill: Pardon me. He is a chiropractor-naturopath. A chiropractor alone is not enough, but a chiropractor-naturopath has extra talents.
Mrs Sullivan: I see. Your son is now an outpatient at the Queen Street Mental Health Centre? That continues?
Mrs Hill: That is right.
Mrs Sullivan: Does he continue both the therapy from the Queen Street Mental Health Centre along with the therapy from the chiropractor-naturopath?
Mrs Hill: That is right, and he will have to be under the care of the hospital until he is off the neuroleptic drugs. Of necessity, they have to be reduced very slowly. The doctor there is very conscientious, but the amount of the drug is now reduced by a third and Brian is coping very well.
Mr J. Wilson: Thank you, Mrs Hill. It is very interesting reading. What has the response been to your proposal that was put forward to the Queen Street Mental Health Centre? Have you received a response to date?
Mrs Hill: The response has been that they cannot do anything like this because they are under the Canadian mental health department and that this is unproven. So I thought, okay, if it is unproven, then we will give you an example. That is why we went ahead and worked with Brian.
Mr J. Wilson: Good for you. Just in reference to the bills that are before this committee, have you had a chance to scan through the Advocacy Act or the Consent to Treatment Act and do you have any comments on those acts?
Mrs Hill: I think possibly the thing that bothers me with the Mental Health Act is this business of trying to get the patients under care. My feeling is that those patients do not want that kind of care. If we can do something to change the kind of care they get, they may not be so adamantly against it.
Mr J. Wilson: Does your chiropractic-naturopath have any other patients who are schizophrenic?
Mrs Hill: I do not know, but I do know there is one guy who comes in there, and whenever he comes in, we all postpone our treatment and let him go in because he is paranoid and he cannot stand any crowds.
Ms Carter: I certainly find this an interesting approach, but I am just wondering. You are a member of Friends of Schizophrenics. I am just wondering how your associates in that group react to the kind of approach you are taking and the kind of thing you are doing.
Mrs Hill: I am a rebel. I am trying to educate the Friends of Schizophrenics, because I feel I am a real friend. When I go to the meetings, I feel they are playing a psychological game called, "Ain't it awful?" It goes round and round in circles and it ends up, "We can't do anything." It does not get anywhere. So I am trying to educate them, but it is hard work.
Ms Carter: You are certainly much more upbeat than some of the parents of schizophrenics we have heard from, and I certainly hope your son will have a full recovery.
Mrs Hill: I know he is. I do not have any doubts about it.
The Chair: Mrs Hill, on behalf of this committee I would like to thank you for taking the time out this afternoon and coming and giving us your presentation.
Mrs Hill: Thank you, and thank the person who did not turn up so I could get here. Thank you very much for your patience.
ONTARIO PSYCHIATRIC ASSOCIATION
The Chair: I would like to call forward our next presenter, from the Ontario Psychiatric Association. Good afternoon. Just a reminder: You will be allowed a half-hour for your presentation. The committee would appreciate it if you would keep your remarks to about 15 minutes to allow time for questions and comments from each of the caucuses. As soon as you are comfortable, could you please identify yourself for the record and then proceed.
Dr Hoffman: I will limit myself to 15 minutes in my presentation. I am Dr Brian Hoffman. I am a psychiatrist. I am the director of the psychiatric day treatment centre at Mount Sinai Hospital and I am an associate professor of psychiatry at the university, so I teach medical students and residents about psychiatry. I have been in practice for 26 years. I am here on behalf of the Ontario Psychiatric Association because for the past eight years I have chaired a committee that has been examining all the legislation and proposed legislation that affects the mental health and treatment of citizens in Ontario.
Just to remind you, the psychiatrists in Ontario number about 1,000, close to 1,100. We have all done our medical training and our internship, and they take a minimum of seven years. In addition, we have taken at least another four years learning psychiatry and how to treat those who are mentally ill.
Members of our organization, in particular members of my committee, have met with a large number of other organizations about these laws. We have met with the Ontario Medical Association, the Ontario Hospital Association and the Ontario Friends of Schizophrenics. We have met with the staff of the Ministry of Health, when they have been available, the faculties of medicine, interest groups within the nursing profession and interest groups among the legal profession, some of whom are most senior and from the rank and file of their group.
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I personally have had the pleasure to work with David Weisstub on the commission on competency, and we had many long discussions. Some of us travelled with him, using private money, to Israel to meet with experts from many different countries of the world, people who work in government, law and medicine and are involved in the field of competency, advocacy, legal rights and the protection of rights.
Let me say that there is not one other country or jurisdiction in the world that currently has laws such as the proposed laws that would interfere with treatment as much as these laws, as currently drafted, would. There has usually been consensus that the best protection for the patient is a competent, caring physician. The law and advocacy should step in when things go wrong. If the law gets involved too early, physicians will practise defensively, avoid the seriously ill and do what is legally safe. That is why these other countries have not moved to the same degree, even though they have better laws, in my opinion, on areas of advance directives, living wills and rights protection.
As members of my profession watch the proceedings of this committee we are troubled. We see that there is a relative uniformity of opinion of all of the above organizations we have met with, but despite all the hearings and all the briefs the government has produced no amendments. The government has allowed no extensions of time for further consultations. There has been no allowance for discussions of amendments from those who will be affected by them. It is our perception that we appear to have a government that consults but does not listen.
Finally, we are troubled by rumours that this government does not want or respect the opinion of professionals. It will not consult with them. The professionals were not consulted when this law was drafted. We will not be consulted, apparently, when the amendments are brought down. We have never been shown any amendments.
We are further troubled that this government, I am told -- rumours -- believes that Bill 74 is the most valuable of the bills and that it would be acceptable to most professionals even without Bills 109 and 110.
I can tell you that the public is watching. I believe the public wants a government that is passionate but listens to reason. Unfortunately there is a perception and the fear that this government is passionate but that it has a history of passing legislation unchanged even after vociferous and rational arguments for amendment.
I want to cover three areas, and I have put these into the handout I have circulated: some strengths of the bills as we now see them, some weaknesses of the bills and some general recommendations for change.
The strengths are numerous and important. The legislation provides clear laws on advance directives, living wills and the use of powers of attorney and guardianship. We need these. Some of the phrasing is awkward, such as "wishes," but this could be hammered out. The proposed legislation gives a clear definition of who is competent and who has the right to accept or refuse treatment and who does not have the right to accept or refuse treatment. It protects the rights of competent patients. There is a clear hierarchical list of substitute decision-makers, including things that are not currently in our law: common-law spouses and homosexual lovers. It is good that the law outlines the basis of substitute decision-makers' decisions. There is advocacy for those who identify it as abuse. In my opinion, the real value of these three bills lies in Bills 109 and 110. With minor modifications, true progress and value can be found for both medicine and legal rights.
But some of the weaknesses: First, most of the organizations we have consulted find Bill 74 to be totally unworkable. To name a few, these include the Ontario Psychiatric Association, the Ontario Medical Association, the Ontario Friends of Schizophrenics, the Ontario Hospital Association, the Ontario Psychological Association, the faculties of medicine, the Registered Nursing Association of Ontario, the Victorian Order of Nurses of Ontario, the Ontario Nursing Home Association and the Ontario Long Term Residential Care Association. Hear these organizations. There is uniformity of opinion.
Second, the rights of the incompetent patient are not protected. I said the strength is that the rights of the competent patient are protected, but the rights of the incompetent patient are not protected. You give incompetent patients the right to refuse treatment and, through a system of incompetent appeals, resist treatment indefinitely. If you view incompetent patients the same as our children, they deserve timely and effective treatment, and it is the job of society to make sure this treatment is available while respecting their rights.
Third, you are creating an adversarial system within the field of medicine. The law talks of rights, but it does not talk of treatment. Should the laws not direct attention to the rights of the competent patient and the rights and treatment of the incompetent patient? Advocates are given the directive to act on patient instructions. Advocates and lawyers, however, have no written guidelines or ethical standards on when they should not act on an incompetent patient's instructions, a point made by Professor Weisstub in his 500-page report.
Fourth, review boards in psychiatry, as they now stand, and you want to extend this to all of medicine, often take three hours. Last week, one at Mount Sinai Hospital took eight hours. The psychiatrist must attend this. The longest review board I have seen was 10 full days spread over three weeks. Is this what you expect a neurosurgeon or an internist to do when a patient is delirious and refusing to comply with treatment?
Fifth, as written, the powers of the advocate are powerful -- too powerful. They are in fact police powers without accountability, training or liability.
Sixth, one reason I am here today rather than merging our stand with the Ontario Medical Association's is that not enough was said that there are two areas in these laws that discriminate against psychiatric patients. Some of the advance directives of psychiatric patients are ignored when the advance directives of no one else could be ignored.
For example, a schizophrenic who is competent, and they usually are on an outpatient basis, may want to write an advance directive that he wants to be admitted to hospital and treated with anti-psychotic medication when he becomes psychotic. He wants to be protected from his own incompetence. According to this legislation, a substitute decision-maker or a guardian could not do this unless he went to court for a court order. In no other group does the law override such an advance directive -- with Alzheimer's disease, with mentally retarded, with coma.
A second example is, guardians cannot sign patients into a psychiatric facility on their own belief system as to what is required. You could get them into neurology or you might be able to get them into neurosurgery for a brain operation, but you cannot get the same patient with much of the same pathology into a psychiatric ward where we can provide psychotherapy, group therapy, family therapy and we have a better knowledge of medications that might avoid some of the more intrusive medical treatments.
Even though psychiatrists are doctors and work in a general hospital, the law treats us as jailers working in a prison. More important, such a law ignores the right of incompetent patients to receive the best possible treatment while we are respecting their rights.
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We are not even recommending the use of force. But if any patient is incompetent and has signed an advance directive and the substitute decision-maker wants to sign the person in and the person is willing to stay because that person has that power, then force is not required. If they want to leave, as with the other illnesses and wards I have talked about, the person would be allowed to leave. You could only force them to stay using the Mental Health Act, but to say that a substitute decision-maker would have to take an advance directive to court is discriminatory against psychiatric patients, illnesses and wards.
My seventh point is cost. At a time when this province spends less than $2 million per year on mental health research, the cost of advocacy is obscene. Schizophrenia does affect 1% of the population at some point in their lives. Severe depression will affect 10% of the population; mania, another 1%. Suicide is the cause of death in 6% of all deaths in Ontario. The morbidity and mortality of these conditions, which affect the young more than the old, is greater than heart disease, cancer or any other disease, and we spend less than $2 million a year on research.
The official guardian and the public trustee have both said they would require at least $25 million to $30 million to set up an advocacy program for the advocates. This does not take into account the indirect costs of review boards, lawyers' fees, longer lengths of stay and beds tied up, nor does it include patients not admitted at all.
Other problems that could be mentioned -- and I will, but I will not describe it in detail with this current legislation: Children will be able to refuse treatment. You have heard the OMA describe that.
Second, the requirement that all risks be outlined is impractical. I cannot do that for an aspirin tablet. Rather, it should be similar to the common-law standard that currently exists in court of common or material risk, plus an obligation to answer the patient's specific questions.
Third, the requirement that emergency treatment can only be provided if there is danger within 12 hours is arbitrary and unrealistic, unworkable. If you have a heart attack, your chance of dying within 12 hours is 12%. The law says a doctor can only intervene if it is likely that will be serious bodily etc harm. Is 12% likely? "Likely," as we use it in law, means more likely than not. You have to hit 51%. If you start using words like "likely" or "probable," you will limit the doctor's ability to help people who need to be helped, including the most obvious one, heart attacks.
Solutions:
1. Look at your priorities. Look at what is lacking. Give some deep thought to the real movement you can make forward in the areas of advance directives, living wills, substitute decision-makers and guidelines for decision-makers. In other words, give a priority to Bills 109 and 110.
2. State in the preamble of these laws that the purpose is to protect the rights of the competent patient and the rights and treatment of the incompetent patient. It is not in the preamble, and if it is not there, advocates will come in and act like lawyers. In psychiatry, for too long we have had advocates come in and think they are trying to get someone out of jail, and it is not jail; it is a hospital. The patients must continue to work with the doctor if they hope to get out of hospital, and the adversarial system is detrimental.
The most vulnerable patients in our society must have their legal rights protected, including the right to effective and timely treatment, which is a right in our society that is given to every other member. You cannot, by your laws, prohibit incompetent patients from receiving treatment when in fact they are refusing on the basis of their illness.
3. Give the legislation writers time to write the revisions that will give the impression that you have listened. Bring back your amendments for further open discussion. You can still meet your deadlines.
4. Provide active advocacy where there is evidence that a patient is or may be abused; for example, on patient complaint or the complaint of any other person.
5. You can cut down the cost of advocacy by allowing paper notification and pinning up of a phone number. If you bring in advocacy when there is no proof of abuse, if you label every vulnerable adult as abused, you are making a mistake. There is a difference between being a vulnerable adult and being abused and you should wait till there is a complaint before you bring in the very costly system that interferes with treatment.
6. Cut down the adversarial system by instructing hospitals to provide internal advocates that are accountable to the community board.
7. Do not discriminate against psychiatric patients. Their advance directives must be respected the same as other advance directives. Their guardians must have the same powers of admission and treatment order as if their relatives were physically ill. Thank you very much.
Mrs Sullivan: Dr Hoffman, this has been a very interesting and useful presentation. To your list of those who have requested that the bills be withdrawn, amendments prepared and this legislation treated as a draft legislation and a new consultation period to follow, we can also add the College of Physicians and Surgeons of Ontario and the College of Nurses of Ontario and many other organizations who have been before us, including Kerry's Place, which deals with autistic people and was here with us this morning.
I am not going to take time to ask you questions, but I am going to ask the parliamentary assistants or their representatives who are here, once again, if the government will now agree to treat these bills as draft bills, to come back with redrafted bills which include amendments, provide time for analysis and review and public hearings before proceeding to clause-by-clause.
Second, I would also like a confirmation of the government's intention, which everyone knows has been rumour for some time, to proceed with Bill 74 rather than with the package of Bills 108, 109, 74 and 110. That is certainly the talk that is out on the street. We would like to have confirmation of the answers to both of those questions.
Mr Winninger: I do not think our position has changed, just speaking from the point of view of the Attorney General. We indicated earlier in these proceedings that we were anxious to hear all the presentations, all the deputations before we tabled any possible amendments for review. That position certainly remains intact.
Second, in terms of timing of enactment of these bills, it is my understanding that these three bills will continue to proceed as a package. I would indicate for the record that we have heard from many other presenters that after 10 years of talking and discussing this legislation it is high time the legislation was enacted without any further undue delay. I do not have my list of presenters with me, but one notable one that comes to mind was Carla McKague, a well-respected lawyer with the Advocacy Resource Centre for the Handicapped, who indicated that there had been enough discussion and the time was to act. Speaking from my vantage point, that would be the intention.
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Mrs Sullivan: The parliamentary assistant has not indicated if there will be time for consultation and analysis before proceeding to clause-by-clause. Perhaps the parliamentary assistant to the Minister of Citizenship can respond to that question.
Mr Malkowski: We have heard from the people presenting here sharing their various opinions. We were here to listen to that first before talking about possible amendments which then could be reviewed at that time. Over the years we have heard many people presenting and there have been many different groups. During previous governments they have also supported the principle of advocacy and we have heard from people that it is now time to start implementing some of what we have heard, through an advocacy system.
Mrs Sullivan: On a point of order, Mr Chairman: I want to make it very clear that the consultative document that is specifically referred to in the statements made by the parliamentary assistants was the result of commissions. Since those commissions came forward -- I include the Fram commission and the Sean O'Sullivan report -- and one document which was issued as a consultative document in the summer of 1990 by the previous government, there has not been consultation. It is unfair, and indeed false, to indicate that there has been consultation on this package of legislation. It is absolutely impossible to believe that the government considers this package of legislation acceptable when every single health care professional, through the organizations in the province, have come forward and asked for the legislation to be withdrawn. It is absolutely unacceptable. That would not have happened had that consultation occurred and that should be very much on the table.
The Chair: I might respond that the parliamentary assistants have said that this committee process is the consultation process for this legislation.
Mrs Sullivan: Well, it is not enough and it is very clear that it is not enough.
Mr Sterling: We are very much concerned about proper consultation. Proper pacing of the legislation, I think, is the way I would rather put it in terms of a bill or a number of bills which could have, I think, a tremendously significant detrimental effect if not drafted properly with a view to how they are going to be implemented. I think they could be disastrous for health care professions -- not the professions, but the treatment of the patients.
As I go through these hearings, and we are getting down to the final strokes of these hearings, I am becoming more and more concerned with the general layout of Bills 108 and 109. On Bill 74, I agree with your remarks totally that it is obscene to spend $30 million on advocates to run around this province and advise people of their rights when we are spending less than $2 million on mental health research. I agree 100% with you on that. I would rather give the $30 million to mental health research and forget about the advocates altogether.
Notwithstanding that, on Bills 108 and 109 my support for this legislation came out of the advance directive part. I think it is extremely helpful for the individual, the family and the health care profession to know what the patient wanted done to him or her when he or she was competent. As we go through these and hear from people who represent the various groups -- schizophrenic patients, Alzheimer's patients and people who are just old and have other mental dementia -- is it possible for us to draft a consent bill which properly gives these people the question of consent. Is it possible or are we trying to do something that is impossible? Should we perhaps just forget about it and rely on the common law? You would have quite an experience with a number of these groups we are trying to cover in legislation. Would we be better off just going back to the common law, dealing with the advance directives and forgetting about the rest?
Dr Hoffman: Yes, if we split off. I was not quite clear whether you wanted me to address advance directives, where there is a real need for legislation, or competency and consent. When the Ministry of Health pulled together a committee to brainstorm issues of consent, there were about 30 lawyers there. I must admit Carla McKague was not there. I think in fact the most senior and respected lawyers in the province were, but Carla was not. There were perhaps three physicians there. It was a meeting chaired by the director of legal services at the Ministry of Health. The lawyers really thought this was a common law issue -- competency and consent -- that the protections were there, that a physician was bound by law to provide certain things. If he did not, then the patient or his representative had recourse to the hospital, the college or civil court. That is the route that group of senior lawyers really came to. They thought it was a mistake to bring this into legislation.
From my point of view, the legislation is probably somewhat more inflexible than common law. I think common law could grow with the situation, as it has over 30 or 40 years. There may be increased demands. Maybe 10 years from now such information should all be in written form or on computer diskette. I think the courts and the professional colleges will modify common law over time. Personally, I prefer to see that in terms of allowing changes in the future of upgraded standards that you and I could not envision currently.
Mr Winninger: Thank you, Dr Hoffman. I would like to clarify a couple of matters with you that I find somewhat confusing.
First of all, you would agree with me that under the common law if someone declines treatment, a guardianship order would have to be taken out to impose treatment on that individual. We are proposing under Bills 108 and 109 what seems to have some appeal to you, a system where there can be guardianship orders made and under section 19 of Bill 109 an individual can actually be admitted to a psychiatric facility and deemed to consent to admission once the guardianship order has been made --
Dr Hoffman: No, it is not true. There is another section that says if it is to a psychiatric facility, that can only be brought about through an order of the court.
Mr Winninger: Right.
Dr Hoffman: So there is a specific exclusion to psychiatric ward.
Mr Winninger: Subsection 19(2) says, "If the person is 16 years of age or more and objects to being admitted to a hospital or psychiatric facility, only a guardian of the person appointed under the Substitute Decisions Act, 1992, has authority...to consent to his or her admission."
Dr Hoffman: And that admission must be specifically labelled in the court order that gave him guardianship.
Mr Winninger: Right, but that is an advance over the situation now that we heard Ontario Friends of Schizophrenics complain about where there is a revolving door of admission, treatment, release and then non-compliance with treatment.
Dr Hoffman: Sure, it is an advance from a situation that is currently unworkable, so I am in favour of it. But why you would discriminate against psychiatric patients and make it unlikely that even a guardian would be able to penetrate the legal system is beyond me.
Mr Winninger: Okay. Would you agree with me, Dr Hoffman -- I know you have a great deal of background and expertise in these matters -- that without the Mental Health Act there would not be any ability to admit or treat, simply because there would not be any civil committal, there would not be any substitute decision-making for psychiatric treatment, as there is under section 35 of the Mental Health Act.
Dr Hoffman: Unfortunately we do not know what guidelines the court will use. If you refer the admission to the court, then I have no way of knowing what the guidelines will be under which a judge would so permit this admission to a psychiatric facility. I have no guarantee that it would not be as strict or stricter than the Mental Health Act, which is totally against what you are trying to accomplish.
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Mr Winninger: Could I have another moment or two, Mr Chair?
The Chair: Mr Malkowski would like a quick comment. It is up to you.
Mr Winninger: I will finish up quickly and allow Mr Malkowski.
The Chair: We only have one minute left. Your choice.
Mr Winninger: I will let Mr Malkowski come in.
Mr Malkowski: I will defer to Mr Winninger, if you want to wrap up.
Mr Winninger: I will complete my line of questioning then. We have heard from victims of psychiatric abuse. We have had people appear before us in these hearings who have been lobotomized. We have had people appear who have had electroconvulsive therapy treatment and suffered very negative side-effects from that. We have also had people appear before us who have been treated more recently with drugs and suffered adverse effects from that.
Surely the kind of framework that is set up under the Mental Health Act, the review board system, is a small price to pay to ensure that the rights of psychiatric patients are protected. I know you said they go on too long. I have done dozens of review boards, representing patients or the official guardian, and even one hour seemed too much for the psychiatrist to stand to ensure that a reasoned decision was made either confirming or setting aside the psychiatrist's decision.
You talk about the caring, competent physician. Even premising that all physicians are caring and competent, surely there needs to be some protection for mental patients from the kind of abuse we have had witnessed before us.
Dr Hoffman: Yes, I agree. I think what you have to decide is, at what point do you bring in an advocate and an adversarial system? It is clear the rights advisers take an adversarial approach. The Manson report, surveying not just hospital staff but community people, repeatedly reported how adversarial this approach is. I think you have to decide whether you are really going to bring it in every time a patient is incompetent, that is, vulnerable, or when there is some evidence, such as a patient complaint, that something is being done. I think it depends on whether you bring it in at every step, which will mean at least nine cases out of 10. The more judgemental it gets, the longer the review board will be. You want psychiatrists to be there, that is fine. Do you really want your neurosurgeon to be there or your neurologist?
The Chair: Dr Hoffman, on behalf of the committee, I would like to thank you for taking the time out this afternoon and giving us your presentation.
AIDS ACTION NOW
The Chair: I would like to call forward our next presenter, AIDS Action Now. Good afternoon. Just a reminder that you will be allowed a half-hour for your presentation. The committee would appreciate it if you would keep your remarks to about 15 minutes to allow time for questions and comments from each of the caucuses. As soon as you are comfortable, could you please identify yourself for the record and then proceed.
Mr Cornwall: My name is Alan Cornwall. I am a lawyer and I am a member of the steering committee of AIDS Action Now.
AIDS Action Now is a Toronto community-based activist organization, the primary mandate of which is to seek broader and more equitable access to high-quality treatment and health care with particular focus on the needs of people with HIV and AIDS. The primary objective of the organization is to expand the range and the quality of treatment and health care available to people living with AIDS and HIV.
Perhaps I could begin by explaining to the committee the importance of treatment and health care services to people with HIV and AIDS and some general points about the nature of HIV and AIDS as they may be relevant to this proposed legislation.
AIDS manifests as a series of different opportunistic infections in individuals with weakened or compromised immune systems. The weakening of the immune system is believed to be caused by a virus known as HIV. Once infection takes place it is believed that the virus can take many years to damage the immune system, and the damage can be slow and progressive. As AIDS and HIV impair the immune system, the health of most individuals with HIV infection and AIDS is affected by various opportunistic infections which can range in severity from being mild or chronic to being acute and life threatening. The severity and nature of conditions can vary dramatically over the course of a person's illness.
The wide range of opportunistic infections requires an equally wide range of treatment. In order to be effective, treatment must be early, fast and aggressive. As more and more treatments become available for opportunistic infections and diseases associated with AIDS, the quality of life and the life expectancy of people with HIV and AIDS is increasing to a point where HIV and AIDS has come to be seen by many as a chronic manageable condition rather than as inevitably fatal. However, treatment with respect to HIV-related problems is very complex, and decisions with respect to treatment must be well coordinated and planned.
AIDS Action Now believes that empowering people with HIV and AIDS to make their own health care decisions is vital to the quality of their health. In order to participate in one's own health care decisions one must have full and broad access to all relevant treatment and health care related information. This is particularly critical in the context of HIV and AIDS.
Another point to emphasize is that many people with AIDS and HIV rely upon treatments which are experimental or not approved and rely heavily upon non-traditional remedies and therapies and treatments, not just prescription drugs and traditional medicine.
We believe that the principles of informed consent and the right to delegate decision-making powers must be applied in the context of all treatments. We therefore endorse the broad definition of "treatment" contained in Bill 109, An Act respecting Consent to Treatment, and would strongly object to any narrowing or limitation of this definition or any less of a standard of informed consent.
Before I get into a discussion relating to particular recommendations, there are a few additional facts which may be of interest with respect to AIDS and HIV as they relate to the health care system and situations of people with AIDS and HIV, and I will just make these points quickly. HIV and AIDS is a recognized disability under human rights legislation. People with HIV and AIDS are recognized as disabled by human rights legislation. The groups of individuals affected by HIV and AIDS are communities of people who are particularly marginalized and who routinely face discrimination, and the discrimination is rampant and systemic. Gay men and IV drug users, for instance, and increasingly more and more women and people of colour are affected by AIDS and HIV.
Another particular problem is that the quality of treatment and standards of treatment are generally poor and inconsistent throughout the province. There are very few doctors within the province who specialize in HIV- and AIDS-related illness, and those few doctors bear the burden of providing health care services to a very large patient base. People with AIDS and HIV frequently use hospital services as well.
Another point I would like to make before I go on to refer to specific recommendations relates to the role of the family, and this is particularly relevant in the case of HIV and AIDS. Vulnerable persons must rely upon the good faith of family members or care givers to recognize, ascertain, explain and enforce the rights of vulnerable persons. While in many instances family members and care givers choose to fulfil their role as such in a responsible manner to the benefit of vulnerable persons, many vulnerable persons are not fortunate enough to have such family members or care givers upon whom they can rely for this purpose.
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In particular, with respect to HIV and AIDS, individuals are often rejected or alienated by their family members upon learning of their infection or illness. It is unfortunately the case that for significant numbers of people infected with HIV or afflicted with AIDS their partners, their care givers and their care arrangements and other wishes are not recognized, let alone respected, by their parents or other legal family members. In many situations, family members do not act in good faith, in the best interests of vulnerable persons with HIV or AIDS. This is particularly so with respect to AIDS and HIV because of the nature of the communities affected.
I have distributed along with our brief a copy of a document entitled Policy Options 1992, printed by Aids Action Now, which outlines issues of importance to people with AIDS and HIV. I have distributed it for the purpose of highlighting the broad and complex issues facing people with AIDS and HIV which may require advocacy services. These are the types of issues that advocates may be dealing with in the context of vulnerable persons with HIV and AIDS. A copy of that document has been circulated. I will not make reference to any more particular issues.
I would now like to go on to summarize very briefly some of the major recommendations we have made in our brief, and I would urge everyone to read the entire brief because this is summary only. I have skipped over a number of the points, and I am just going to highlight very quickly some of the major points we are making.
First of all, our first recommendation is that the government make the amendments which we have recommended and proceed as quickly as possible to enact these bills, Bills 74, 108, 109 and 110, into law and to proclaim, enforce and implement them as quickly as possible. In this regard, we endorse the submissions made by the Ontario Advocacy Coalition wholeheartedly. It is our first and primary recommendation. We do endorse the legislation and recognize its usefulness and its need at this time.
The remainder of the recommendations which I will make are outlined in the brief and are more specific or detailed in nature. Rather than explaining the detail behind the recommendations, I will try to state them in a general way that focuses on the principle that we are concerned with rather than the particular language of the recommendation, which you can find in the brief we have submitted.
First of all, as I said earlier, we endorse the broad definition of "treatment" as well as the broad requirements contained in subsection 5(2) of Bill 109, An Act respecting Consent to Treatment, the informed consent requirement. We endorse the inclusion of information being provided before informed consent can be seen to be given of all risks regarding all available treatments and all alternative courses of action. We think it would be unfortunate if that standard were lessened in any way.
We have also, as a separate recommendation, recommended that the consent statute be amended to include as an offence the provision of any health service without consent in accordance with the Consent to Treatment Act, 1992, and we have recommended that that legislation create an offence for the provision of services without consent.
Third, we have looked at the definition of "partner" that is contained in the legislation, and while we are pleased with the fact that gay and lesbian relationships can be recognized for the purposes of this legislation by health practitioners, we would ask that the definition of "partner" be amended to remove the requirement that others recognize relationships in order for them to be validated for substitute decision-making purposes. When I say "validated," I do not mean through the process, I mean recognized generally. The reason for this recommendation is that a large number of people who are affected by HIV and AIDS live in relationships which are not traditional and have not traditionally been recognized. We find that particularly threatening in a society that has not yet dealt with that discrimination and that problem.
The next recommendation relates to the prioritization of substitute decision-making individuals. You will see in our brief that we have made reference to the fact that subsection 16(1), paragraph 4, includes the recognition of the claim of a partner and a spouse. We would recommend that the partner be given priority because of the cohabitation requirement. We believe that in cases where, for instance, there is a spouse who is no longer cohabiting with an individual, if that individual has a partner, the partner should have priority over the spouse in being a decision-maker on behalf of the incapable person.
We have also made a recommendation with respect to recognition of cohabitation, that cohabitation should be a factor which should cause an individual's claim to prevail. When you look at section 16, the various paragraphs following partner and spouse, we believe that other family members should be given priority in the event they are cohabiting with the individual.
We have made a number of recommendations relating to a general concept that we believe, that is, that people who are affected by a particular disease or illness, or in our case HIV or AIDS, should be allowed to participate and should be actively able to participate in all the decisions which affect them. We believe that the advocacy legislation in its draft form does recognize that principle and does a good job of it. However, we have made other recommendations as to the implementation of that accountability and representation to disabled communities. I will not get into any detail on that. You can read our brief on that point, but we do hope to have participation in the Advocacy Commission, advisory committee status, and also in the affairs of any review board. Generally, I believe disabled people should be participating in the affairs of the Consent and Capacity Review Board.
The next important recommendation relates to the importance and paramountcy of the concepts of privacy and confidentiality of information. Generally speaking, we believe that the privacy and the confidentiality of medical information is more paramount than any other kind of information and causes more of a concern, particularly to people with HIV and AIDS, because of the discrimination, the stigma and the lack of access to services etc, that people with HIV have faced in the past. We believe this legislation should recognize that problem exists. In this regard we have made a number of recommendations.
With respect to subsection 30(4) of the Advocacy Act, there is a permissive right to release information in circumstances where the advocate believes the person could cause harm to another person. I am not paraphrasing the language directly. Our recommendation is that the release of any such information should be restricted to the purpose of stopping such harm, just as the release of any information should only be permitted for a particular purpose, and only for that purpose, without someone's consent. If the purpose of this subsection is to allow advocates to release information to avoid harm resulting to another person, that should be stated in the legislation.
In addition, we have recommended that in no event should a disclosure of information relate to the vulnerable person's medical condition. We do not believe it is necessary that that information be released, and that is particularly relevant in the context of HIV. We cannot contemplate a situation where the fact that a person is infected with HIV or has AIDS needs to be released for this purpose.
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We have other recommendations relating to privacy and confidentiality, and I am coming to a close shortly; it is not going to be much longer. All records, files and information in the hands of the Advocacy Commission should be subject to the privacy and confidentiality provisions of the Advocacy Act, not the Freedom of Information and Protection of Privacy Act. We like the protection that is afforded by the draft legislation with respect to records and we do not believe that the Freedom of Information and Protection of Privacy Act is sufficient in this regard. We have made a recommendation to amend the Advocacy Act provisions on this point.
Another recommendation we have made is one which is probably quite obvious, that is, we believe adequate money and resources have to be allocated when this legislation is put into effect, and in particular we will be concerned with the amount of effort and resources that are put into training and certification of advocates. We would ask for at least a code of conduct of some form that will prescribe the duties of advocates in the performance of their services as advocates and that there be some sort of disciplinary or other mechanism available to enforce that code of conduct.
Those are our main points. I will just summarize by repeating that we do endorse the legislation and would ask for it to be enacted and proclaimed as quickly as possible.
The Chair: Thank you. Each caucus has about four minutes for questions and comments.
Mrs Sullivan: I want to congratulate you, Mr Cornwall, on a very extensive and I think useful piece of work in your recommendations. We have heard from other groups and organizations similar concerns; I think of research as being one area. The very practical work you have done even in bringing forward potential drafting changes is useful.
There was one area that really quite struck me as an interesting one and I thought you might want to expand on it. I have lost it now, but basically it relates to a patient being able to seek other treatment or to ask for specific treatment other than that which is recommended or put forward. I think it is in the definition of "consent."
Mr Cornwall: Yes. The point we have tried to make on that issue is that many people with AIDS and HIV rely upon alternative therapies and drugs and treatments that are not prescribed or not yet approved by law for treatment. They rely upon those substances.
The HIV community is constantly fighting for quicker access to a broader range of those treatments and our general concern is that we want our substitute decision-makers to be able to access them just as we ourselves could if we were in a situation of not being able to make requests ourselves. Until the absolute right to access such treatments is put into law, people with HIV and AIDS will continue to be using experimental sources to access drugs. We do not want that to be limited in any way simply because one has to use a substitute decision-maker to access a substance.
I cannot overemphasize the importance of these experimental drugs. They are very heavily relied upon, particularly because of the fact that this disease and its many opportunistic infections are new in the past 10 years and there are more and more drugs becoming available but the drug approval process is very slow. Is that the point you were asking about?
Mrs Sullivan: Yes, and I wanted to be certain that was on the record.
The other area I wanted to ask about, because it has created problems for many other groups, is your inclusion, in the definition of "treatment," of diagnosis. What health professionals tell us is that the inclusion of diagnosis in the definition of "treatment" means they cannot proceed even in an emergency situation to deal with caring for the patient if diagnosis is included. You could not even put a stethoscope on a chest, by example.
I am not asking you for a quick answer, but I think it would be useful if you put your mind to that, because I understand the difficulty with the use of the word "diagnosis" in HIV testing versus the use of the word "diagnosis" in other circumstances.
Mr Cornwall: I understand your question. There are two points. One is that we do believe that diagnostic processes should be included in the treatment, particularly because diagnosis and monitoring play a very significant role in monitoring the progress of the disease. Not a lot is known about the progress of the disease at this point. However, there are certain indicators that individuals can follow with the help of their doctors, and the availability of those diagnostic tests must be brought to the attention of the infected individuals if they are to be properly monitoring their health care.
For instance, there are a series of blood tests that are available to monitor the cells of the immune system which are destroyed by the HIV virus and one can -- this is a very sloppy description of it -- monitor the rate of deterioration of the immune system by performing those diagnostic tests. We believe it is imperative that doctors be fully informed and that their patients be fully informed as to the availability of various tests so that they can properly monitor the progress of their disease.
That is important with respect to various treatments and prophylactic agents that can be used at various points in the progress of the disease. For instance, if somebody is reaching a certain level of deterioration of their immune system, they can start to take a particular series of drugs to prophylax against a form of pneumonia called PCP. In the early days of this disease many people died of PCP. Nowadays very few people do.
A second point on that is that the removal of diagnostic types of procedures from the definition of "treatment" is not necessary, in our view, because there continues to be a safeguard for practitioners in the legislation which permits them to rely on good faith on what they have done.
That is sort of off the top of my head, but I believe there should be some limitation on how far a health practitioner has to go. Obviously you do not have to go into a 6,000-page diatribe to explain every single available remedy, but there has to be a standard of reasonableness of some sort. But in our view the removal of "diagnostic" or "diagnosis" from the definition of "treatment" is not the way to accomplish that.
Mr J. Wilson: Thank you, Mr Cornwall. As Mrs Sullivan said, it is an excellent brief. I had stopped also, although I read through it, to underline the section where you refer to the definition of "treatment." I had to read it about three times to understand what it was you were getting at here in terms of life insurance policies. What I understand is you do not want the same definition of "treatment" used by life insurance companies, which would act as another discriminatory agent, in life insurance policies.
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Mr Cornwall: Yes.
Mr J. Wilson: As you know, our Progressive Conservative caucus did put forward a definition of "treatment" which would effectively exclude the diagnostic act and therefore amend what is in the legislation. Have you given any thought outside of your group, though, to how this might affect other individuals who may be deemed to be incompetent appearing in an emergency room? Our worry was that if a physician, and even the attending nurses, are not able to do some basic diagnostic procedures, there could be a real delay in necessary treatment, because medical physicians and a number of medical practitioners have said to us that often it is not easy to determine internal bleeding. We also have a concern with ambulance attendants who have to do some diagnostic work in order to stabilize a patient and transport him to hospital. That was the basis of our amendment.
I understand it in the case of AIDS and HIV. I think your concern there is more confidentiality and intrusiveness, is it not; that they would go ahead and perhaps do an HIV test without the consent of the patient? Maybe you could just comment on that.
Mr Cornwall: To answer your question, we should probably take some time to consider what you are saying to respond to it, but generally I would think that some sort of provision for emergency situations --
Mr J. Wilson: There is a provision in there, but many health care practitioners have said it just does not make any sense. If there is deemed to be imminent danger within 12 hours, then that is deemed to be an emergency, but it seems to be an arbitrary figure and there is a lot of difficulty around that clause too.
Mr Cornwall: That may be the case. However, I still do not think you should generally eliminate diagnosis from treatment because diagnosis is very clearly an element of treatment and needs to remain so and is part of something that people should be informed about. Decisions around diagnostic procedures should be left to the individual, after having been fully informed of risks etc.
Mr J. Wilson: Just so you understand, our amendment is really intended to deal with any delay that may occur in that process.
Mr Fletcher: Just a couple of comments and questions: One is that we have been sitting through these hearings over the past few weeks and it seems that the big-money professional medical people, the psychiatrists, the Ontario Medical Association and everyone else, are lined up on one side saying: "This is lousy. It's no good. We don't want it." Yet the community-based groups, such as your group, are coming in and saying, "It's about time; we need it." I was trying to get a grasp of why this is happening. I cannot really understand it. I could ask why that would happen, why they would do that. Do you have any --
Mr J. Wilson: There is a 19-page submission on amendments.
Mr Fletcher: I was just wondering if you have any comments on that or if you can understand that yourself.
Mr Cornwall: I really do not understand your question. Why what is happening?
Mr Fletcher: As I said, the professionals are lining up on one side opposed to advocacy legislation and everything else, and why the community-based groups are --
Mr J. Wilson: It is not that black and white.
Mr Cornwall: That probably has a lot to do, in our view, with the health practitioner profession wanting to maintain a high degree of autonomy.
Mr Fletcher: Protecting their turf.
Mr Cornwall: Basically, yes.
Mr Fletcher: How long has your organization been wanting legislation such as this?
Mr Cornwall: We have participated in the advocacy coalition activities for the past couple of years. I am personally not aware of prior to that.
Mr Fletcher: It has been a few years, at least, that you have been waiting for it.
Mr Cornwall: Yes.
Mr Fletcher: Are delays in the legislation going to help you or hinder you? This is something you have wanted. Do we do it now or do we just scrap it, as other parties are saying?
Mr Cornwall: Our position has been that although there are some minor problems with it, we agree with the Ontario Advocacy Coalition submissions. We could sit and talk about this for another five years, as governments are known to do with many different types of legislation.
Mr Fletcher: Previous governments.
Mr J. Wilson: This is the first time we have got into the nitty-gritty of legislation. Let's not mislead people.
Mr Fletcher: I am just asking the question, do we wait?
Mr Cornwall: To get right to the point, yes, there are many people in the HIV and AIDS community who will benefit from this legislation being enacted as quickly as possible.
Mr Winninger: Briefly in reference to the definition of "partner," I think a very compelling argument has been made that we should delete the reference to the recognition by others. What I would like to ask you about is the role of cohabitation. Let's take, for instance, partners who are not spouses. Do you feel that cohabitation should be a requirement in order to qualify as a partner to make these kinds of decisions?
Mr Cornwall: It is difficult for me to say strongly that is the case. There have been many groups and participants in our organization who believe it should be removed, but that was not a point we could come to a consensus on, asking for the removal of the cohabitation requirement.
Mr Winninger: The reason I ask is that you ask that the priorities be adjusted to put a partner who is cohabiting with the vulnerable individual ahead of a spouse who may not be cohabiting.
Mr Cornwall: Yes.
Mr Winninger: Would you agree with me there may be situations where one spouse, for example, is in a nursing home or a hospital of some kind and that is the reason they are separated, and it would still make sense for one spouse to be making personal care decisions on behalf of another, notwithstanding that they are separated?
Mr Cornwall: Yes, I agree. There could be situations like that.
Mr Winninger: Last then, do you think there should be a different test for partners versus spouses in terms of cohabitation, or do you think the same criterion should apply?
Mr Cornwall: Actually, just on your last point as well, my understanding is that the definition of "partner" requires that they be in a relationship of primary importance. I think that would probably be addressed by the fact that the spouse was in, for instance, the institution and is not actually cohabiting with the person any longer. The fact would remain that they have lived together and the relationship is one of primary importance. Perhaps that person would be a partner as well as a spouse. I am sorry, I did not catch your next question because I was thinking of it.
Mr Winninger: I was just wondering, if you did agree cohabitation was an important criterion, whether that should apply to spouses as well as partners, because I can see situations where spouses may be living separate and apart under the same roof, or in some cases in different wings of the palace, and to draw the assumption that there is an ongoing meaningful relationship may be misleading.
Mr Cornwall: Yes. I generally agree with that.
Mr Poirier: I just want to tell both of you that I have had somebody very close to me die very recently of AIDS where the partner of that person was the first one to go to the medical authorities before that person died and was able to get all the information, saying, "I'm the partner of the person who is in hospital," whereas the family, that has been very supportive of the person who died with AIDS, was not able to get any information because, "Hey, we already have somebody who is a representative, a guardian of that person," who has died. He was in hospital at that point, and the family was not able to get anything.
There has to be something wrong somewhere. If the family is supportive and whatever, why the hell could they not get that information also? They had to go to the partner of the person who was hospitalized to get any information because the medical authorities would not even talk to the parents and the family. How would you respond to that?
Mr Cornwall: I would respond by saying that I think it would depend entirely upon the wishes of the person who was in the hospital and what he or she wanted. I would hope in that situation that the doctors and hospital staff would ascertain those wishes and that the partner would be well aware of those wishes and that if there was a reason for resistance with the family, that it would be justified, but it would depend entirely upon the wishes of the person.
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The Chair: Mr Cornwall, on behalf of the committee I would like to thank you for coming and giving us your presentation today.
Mrs Sullivan: On a point of order, Mr Chair: Mr Fletcher put some remarks on the record that it seems to me demean or attribute to the opposition motives that are quite different from what the motives are in our continuing opposition to these bills. We want, and I believe all of the intervenors who have appeared before the committee want, the best legislation to meet the principles that are being put forward. I think that while Mr Fletcher may not have understood that, the parliamentary assistants who have been participating on the committee are quite clear about that. I hope all the intervenors are as well.
The Chair: Thank you for that information.
Mr Fletcher: Is that a point of order?
SCHEDULING OF PRESENTERS
Mr Malkowski: We agreed to send a letter to the institution to allow two presenters to come to the committee. Could I ask the clerk if the letters have been sent, or the one letter, to Mimico and the other facility, and what happened?
Clerk of the Committee: Two letters were sent. The response from both institutions was negative. At this point we are still dealing with one individual to see whether we will be arranging a teleconferencing for tomorrow.
Mr Fletcher: A point of order, Mr Chair.
The Chair: One moment, please.
Mr Malkowski: As a follow-up to that, the other institution said no. Was there any reason given? Was it with no explanation or with an explanation?
Clerk of the Committee: There were no explanations from either institution.
Mr Malkowski: I think it is important that we follow up on that issue.
The Chair: What kind of follow-up would you recommend?
Mr Malkowski: I would recommend that a person perhaps needs to get a temporary pass to allow him to come and present. Which institution said no?
The Chair: Both.
Mr Malkowski: Was it the review board that said no or was it the superintendent? Could you clarify that for me, please?
Clerk of the Committee: The letter to Mimico went to the superintendent of Mimico, and the letter to Kingston Psychiatric Hospital went to the doctor I was dealing with who had authority over the patient to either allow him out or not allow him out.
Mr Malkowski: So the superintendent was the one who said no.
Clerk of the Committee: Actually, I am not sure, because the phone call did not come back from the superintendent; the phone call came back from somebody else at Mimico relaying the information that they would not provide a day pass.
Mr Malkowski: I think it is important that we perhaps send another letter to emphasize the invitation for this person to come to the committee.
The Chair: I think one of the problems we are dealing with right now is that tomorrow is the last day of public hearings. To send a letter would be fruitless at this point. There was one announcement I was going to make, that if we can set up the teleconferencing tomorrow, it would be at 1:30. That is the only time room 151 is available. We are still waiting for a response on that.
Mr Fletcher: On a point of order, Mr Chair: Did you rule on that point of order from Mrs Sullivan?
Mrs Sullivan: Yes, he said I was in order and that I was right.
Mr Fletcher: No, he did not.
The Chair: If you did impute motives, then yes, she did have a point of order.
Mr Fletcher: Did I impute motives?
The Chair: I would have to check the transcript on that.
Mr Fletcher: Thank you, Mr Chair.
Mr J. Wilson: Mr Chairman, I just have a point of information. At 9 o'clock tonight on PBS -- I think that is channel 18 on our cable in Toronto -- is the case of Nancy Cruzan, who was the lady in the United States, I believe, who for some 10 years was in a coma and the family was involved. There is a very moving program on tonight that members may want to watch. It deals with the government's intervention into the decisions made by the family.
Mr Winninger: Is this the Quinlan matter?
Mr Fletcher: No, that was another one.
Mr J. Wilson: I think Nancy Cruzan is the one I saw. It is a different case than the Karen Ann Quinlan case.
The Chair: For the information of the committee, the library will be taping it, so it will be available to the members. Thank you for that information.
Anything further? Seeing nothing further before the committee today, this committee stands adjourned until 10 o'clock tomorrow morning.
The committee adjourned at 1555.