ONTARIO ASSOCIATION FOR COMMUNITY LIVING
ASSOCIATION OF LOCAL OFFICIAL HEALTH AGENCIES (ONTARIO)
FACULTY OF MEDICINE, UNIVERSITY OF TORONTO
CONCERNED FRIENDS OF ONTARIO CITIZENS IN CARE FACILITIES
HUMAN SUBJECTS REVIEW COMMITTEE, UNIVERSITY OF TORONTO
CONTENTS
Wednesday 12 February 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
Ontario Association for Community Living
Nancy Stone, past president
Audrey Cole, chairperson, task force on advocacy and guardianship
Judith Sandys, a member, task force on advocacy and guardianship
Association of Local Official Health Agencies (Ontario)
Tom McFadden, executive director
Dr Colin D'Cunha, member, board of directors
Faculty of Medicine, University of Toronto
Frederick Lowy, director, Centre for Bioethics
Dan Ferguson
Concerned Friends of Ontario Citizens in Care Facilities
Harvey Simmons, president
Dian Goldstein, member, board of directors
Elvin McNally
AIDS Committee of Toronto
William Flanagan, member, board of directors
Wayne Fitton, AIDS support counsellor
Bob Martel, executive director
Ned Lyttelton, member
Research Ethics Committees
Eric Meslin, assistant director, Centre for Bioethics, University of Toronto
Human Subjects Review Committee, University of Toronto
Bernard Dickens, professor of law
Marguerite Young
STANDING COMMITTEE ON ADMINISTRATION OF JUSTICE
Chair / Président(e): Cooper, Mike (Kitchener-Wilmot 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):
Akande, Zanana, L. (St Andrew-St Patrick ND) for Mr Morrow
Curling, Alvin (Scarborough North/-Nord L) for Mr Sorbara
Also taking part / Autres participants et participantes:
Auksi, Juta, Ministry of Health
Bentivegna, Guiseppa, Ministry of Health
Fram, Stephen, Ministry of the Attorney General
Spinks, Trudy, Ministry of Citizenship
Clerk / Greffier: Freedman, Lisa
Staff / Personnel: Swift, Susan, Research Officer, Legislative Research Service
The committee met at 1007 in committee room 1.
ADVOCACY ACT, 1991, AND COMPANION LEGISLATION / LOI DE 1991 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, 1991 and the Substitute Decisions Act, 1991 / Projet de loi 110, Loi modifiant certaines lois de l'Ontario par suite de l'adoption de la Loi de 1991 sur le consentement au traitement et de la Loi de 1991 sur la prise de décisions au nom d'autrui.
ONTARIO ASSOCIATION FOR COMMUNITY LIVING
The Chair: Our presenters are from the Ontario Association for Community Living. I would like to welcome you this morning. For the record, could you please introduce yourselves and then proceed.
Ms Stone: I am Nancy Stone, past president of the Ontario association.
Ms Cole: I am Audrey Cole, chairperson of OACL's task force on advocacy and guardianship.
Ms Sandys: I am Judith Sandys, a member of the task force.
Ms Stone: We are very pleased to be here and to have an opportunity to present to this committee.
As you were informed previously by the Honourable Howard Hampton in his remarks on December 16, OACL is concerned about the very concept of guardianship. Contrary to the minister's statement, OACL does not "represent about one third of the families of people with mental disabilities"; in fact, OACL represents individuals in the province who have developmental handicaps. Nor does OACL bring to you a service provider's perspective, as has also been suggested.
Contradictory perceptions notwithstanding, OACL's role is clearly defined by the objects of its constitution. In coming here today, OACL is fulfilling its responsibility to "promote the rights...and welfare of all persons who are identified as having a developmental handicap...[and] to assist persons [so identified] in realizing their individual potential within the community."
Audrey Cole, chairman of our task force on advocacy and guardianship, will speak to our concerns.
Ms Cole: OACL's concerns relate primarily to the package consisting of Bills 74, 108, 109 and 110 and the effect this legislation will have on a particular group of people. These people are among those who would be unlikely to qualify for a case advocate under the Advocacy Act as it now reads. Due to the severity of their disabilities, they would be unable to instruct the advocate or give the necessary consent for access to their records. They are among those for whom an explanation of the effects of a finding of incapacity would have no meaning were they to be presented with that information under section 10 of the Consent to Treatment Act. They are among those who would inevitably be found to be incapable of personal care under the definition in section 46 of the Substitute Decisions Act. They are people who have severe intellectual disabilities. They are, without doubt, the most vulnerable of people identified as having developmental handicaps.
The essence of OACL's concerns was identified unintentionally but explicitly to the justice committee on December 9 when legal counsel to the advocacy project team for the Ministry of Citizenship told members of the justice committee that, "[Guardians] replace the individual." OACL's question for the government is, how in this era of equality and justice for all people can we in Ontario be considering implementation of a guardianship system designed to legally "replace" our most vulnerable citizens?
One official of government claims that OACL is responsible for this guardianship initiative. It is true that the association used to share the belief that guardianship provided protection and was therefore good. Experience proves otherwise, however. There is no evidence that guardianship law does or can protect people from abuse or neglect. Laws alone cannot do that. Abuse, neglect, exploitation are social, not legal, problems. Only people can protect people, just as it is people who abuse people.
Neither does guardianship enable people to exercise rights they were not previously exercising. In the first place, not exercising a right does not justify taking it away. Second, once the right to make decisions is judicially removed from people and vested elsewhere, it is no longer theirs to exercise. It is a fiction to suggest otherwise.
Our right to make choices and decisions and have them respected is critical to our personal wellbeing. Our choices confirm our human identity and image. Without those rights we are social nonentities. Sadly, that has been the history of people with intellectual disabilities. Stigmatized by derogatory labels, they have been ridiculed, pitied, feared and hated. They have been segregated within or excluded from school, work, natural relationships, community life and citizenship. Now, just as they are beginning to emerge from centuries of social isolation, this legislation will turn back the clock. It sets up a seemingly benign system to channel a particular segment of such people into legal and social oblivion; findings of incapacity are usually self-fulfilling when disabilities are severe.
Despite its benevolent appearance, guardianship remains a paternalistic concept, the effects of which are intrusive, restrictive and destructive of the person and the status of those on whom it is imposed. Not only can it not protect the person in the physical sense; it cannot protect the value of the person as a human being or as an equal citizen.
The Fram committee could not view guardianship as a "positive good" because of such unacceptable consequences. Instead, they saw it as a "necessary evil." Under the double standards of this necessary evil, more of those unacceptable consequences will be generated than by the archaic Mental Incompetency Act the legislation would replace. Two classes of citizen will result: one for those of us whose status and identity are not threatened and also for those entitled to support, particularly through the Advocacy Act, in protecting their rights and furthering their own interests; the other class for those whose right to self-determination will be formally removed by reason of disability.
The Fram report was the catalyst for changing OACL's thinking about guardianship. As members of the Fram committee, with the advantage of hindsight, we believe we were asking the wrong questions about why guardianship seemed to be necessary for certain people. When we start by assuming that certain people are unable to exercise their right to self-determination because of their incapacity, we inevitably look for solutions in the appointment of others to make decisions for them. Mindful of the intrusiveness of that process, we seek to temper it by imposing the least restrictive of a known series of confining alternatives, such as full or limited guardianship, all of which take away rights to some degree or other.
Had we asked how decisions are made rather than who decides, we would perhaps have recognized that the road to self-determination is rarely travelled in solitude. Typically, we make that journey interdependently, in the company of those who care about us. It is not usual for us to make decisions alone and unaided. We make decisions with the affection and support of people we trust -- family, friends or others whose opinions we respect. When we enjoy the presumption of competence or capacity, we are never asked to reveal that we had support in making our decisions, nor are we required to prove our capacity to make them independently. To subject others to such requirements on the basis of disability is discriminatory.
Had we not concentrated on who decides, we would have seen the need to provide for everyone the same opportunities for support in decision-making that most of us take for granted. In the spirit of equality, we would have recognized the need to validate decisions resulting from such support in the name of the person at the centre of it. Perhaps then we would have looked for the most enabling solutions in an infinite and untapped reservoir of alternatives for empowering those of us who are disadvantaged. Rather than competence, we would have been thinking about accommodation. The disadvantage for people with intellectual disabilities is that their decision-making capacity is doubted or denied. Guardianship law cannot accommodate to that disadvantage. To place people under the control of others can, instead, contribute to greater vulnerability.
We must design enabling legislation that validates the decision-making process of those people whose decision-making is discredited, without diminishing either their personal rights or their human identity. Such legislation must be based on clear principles which assert the inviolability of the rights to self-determination and presumption of competence. Such legislation must recognize not only entitlement to support in decision-making, but also that the amount of support that goes into interdependent decision-making is not a ground for either discrediting decisions or compromising autonomy. It does not do it for those of us who presume to be competent. Why should it do it for people who we suspect are not?
Such legislation must recognize that decision-making can, and usually does, take place within chosen and trusted relationships, that the choices and wishes can be made known with or without assistance, through typical and non-typical means of communication, and that some of those non-typical means of communication may only have evolved and may only be expressed within those trusting relationships. It must also recognize that it is the duty of the state to accommodate to disability by enabling the necessary support to be built around people who have severe intellectual disabilities. Only by such principles can the presumption of competence and the right to self-determination be ensured for everybody.
The demand for guardianship is largely driven by the needs of others for legal decision-making authority. Such third-party interests are valid and must be addressed, but only under the same principles that would govern primary enabling legislation. Amendment to relevant law dealing with legal consent contract law and liability in medical or any other context would be necessary, as would provision for resolution of conflict and also checks and balances for prevention of abuse both of individuals and of the decision-making process itself. The spirit of such law must be to lessen disadvantage.
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There was a time when society made no accommodation to disability. People who could not walk up the steps stayed where they were. Similarly those people who could not see or could not hear were not expected to share the same opportunities as those who could. Disadvantage was just believed to be a fact of life for such people. Today we find such assumptions unacceptable and we struggle to accommodate for disability.
We believe in OACL that this justice committee and other members of the Legislature of Ontario share that struggle. We have every confidence that all of you will recognize the need to accommodate to the disabilities of those who are presently among the most vulnerable of Ontario's citizens. The members of OACL will join with you in the effort to protect the freedom and dignity of all people. Guardianship law would make no contribution towards that end.
Mr Chiarelli: I want to say I was impressed with your arguments and your presentation, particularly the comment that to subject others to the proposed process here basically is a type of discrimination and your comment that:
"We must design enabling legislation that validates the decision-making process of people whose decision-making is discredited, without diminishing either their personal rights or human identities. Such legislation must be based on clear principles which assert the inviolability of the rights to self-determination and presumption of competence."
I take it, first of all, that you want to go back to the drawing board and that you do not support the legislation as it is presented at the present time. I have been suggesting on a number of occasions that I really do think we should go back to the drawing board with these pieces of legislation and perhaps look at new legislation in draft form, rather than looking at live legislation which has gone through second reading. I would like your assistance, if you can, in suggesting models of legislation in maybe a little more detail than you suggested. You have indicated some principles upon which you would rely, but can you give the committee some direction as to the type of provisions or some specifics you would want in newly designed legislation?
Ms Cole: In section 5 of our brief we have tried to do that. We have a small section there which is called, "Towards a Legislative Framework for Change." It is based on the fact that guardianship by nature is discriminatory and targets particular groups of people in society for a different kind of benefit, an unequal benefit, than for the rest of society. The necessity is to devise legislation that would enable people whose decisions are discredited by reason of disability to have the same presumption of competence and to have the same right to self-determination that everybody else has, and it has to be legislation that is specific to that purpose, that has nothing to do with those other things like when legal decision is required or medical contract things, that only has to do with enabling people to be regarded as capable. It would have to be very clear on that, that there is not a process, or should not be a process, by which some people can instantly be declared incapable. In other words, that presumption is inviolable.
It would have to recognize, as I said earlier, that independent decision-making is a myth. We do not make decisions alone. Very few of us make decisions alone. There would have to be something in that to validate that, just as it would for all of us. This is not legislation that would only affect people with disabilities. It would be legislation we would all benefit from. As a person who this year is legally and formally going to become a senior citizen, I can say that I certainly would welcome that kind of legislation as I get a little older and perhaps am not able to speak out as strongly as I have in the past.
It would have to recognize that people with profound disabilities particularly do not have typical ways of expressing things. Very often it is only experience that enables a person with a profound disability to know whether he has liked or enjoyed or disliked something. We cannot expect the same kind of instant response from people with profound disabilities, and we have to recognize that and recognize that is legitimate too.
Mr J. Wilson: Thank you very much for your presentation. I think it is one of the best-written presentations we have had. This rivals Mr Rae's Rhodes Scholarship paper. But all kidding aside, I understand, I think, very well where you are coming from because it is so well written. My question really would have been the same as Mr Chiarelli's, because I assume that you have told governments this in the past. You talk about a change of thinking as a result of the Fram committee. Your message clearly is not evident in the section on guardianship. I assume there is a level of frustration. Are there other groups that agree with your philosophy? We have had a lot of groups tell us, I think, particularly in private meetings, that there are a lot of people out there who do not have the bonds of friendship and trust. I think the legislation attempts to pick those people up, while it may very well be acting in a detrimental way to the people you represent, for instance.
Ms Cole: But with all due respect, I think it also acts in a detrimental way to those people, because if its only solution is to take away their whole identity and give all their rights to another person, then it is hardly working in their interests either. I think as a society we have a great deal more to do to care about other people and not isolate them and not leave them out there where they do not have anybody. That is a very important thing in our organization. It is something about which we are very conscious.
Ms Sandys: The underlying issue in all this, as Audrey has indicated, is not the question of who decides, but of how the decisions get made. It seems to me that the emphasis has to move from the issue of a person's competency to assessing the supports that are available to that particular individual. That holds true for the people we have discussed, people with very severe intellectual disabilities, but it applies equally to all kinds of other people who are vulnerable, whose capacity is being questioned for whatever reason. The issue is that it seems to me that the basic focus of legislation has to be on saying, how do we ensure that people have available to them the supports they need for decisions, just as most of us have the supports we require available?
Ms Stone: I think one of the other things that has to be clearly understood is that the government itself has indicated that there are 60,000 people who are vulnerable in the province who would come under the advocacy legislation, except it is not in any position to be able to deal with 60,000 people, so the number is then changed to 30,000. The question in my mind all the way along has been, what happens to those other 30,000? We have some real fears that a great lump of people will be placed under guardianship immediately because they have no one to speak for them and because they cannot verbally say, "I wish to have an advocate." Many of those people can indicate in obscure ways that they have a need for someone to help them to speak, but unless you know that person extremely well, you cannot expect somebody to go once a month and see a person and understand what he is trying to convey to you. Audrey and I both have sons who very clearly have no verbal skills but in fact make their wants and needs known to us very well. Because we know them well, that becomes very clear, but it is very worrisome knowing that there are 30,000 falling between the cracks of this advocacy legislation and what happens to them and what plan is in place to look at their needs?
Mr Winninger: I too found your presentation very readable, and I thank you for that. At the outset I would like to say that I do agree with you that we need to ascertain the least restrictive alternative, the most enabling solution, as you put it, which respects the person's autonomy, right to self-determination and validates that person's decision-making power. On the other hand, a number of times I heard you use the expression, the phrase, "most people did not proceed towards self-sufficiency without some form of interdependence on others." I would ask you first of all whether you agree that there are some people in the province who cannot make these kinds of personal decisions for themselves by themselves.
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Ms Cole: Certainly; my son, Nancy's son. There are a great many people. Not as many as we think, of course, but there are a great many people with profound disabilities who cannot do that.
Mr Winninger: Just so you understand where I am going, are there people who do not have support systems like you and Nancy?
Ms Cole: There presently are some, I suspect; in fact, I know. The ministries of Health and Community and Social Services have already indicated the numbers of such people, in their opinion and from their statistics, who are in various facilities funded by the two ministries.
Mr Winninger: Will you agree that these are the kinds of people who need other persons --
Ms Cole: In their lives?
Mr Winninger: -- to make those decisions?
Ms Cole: No.
Ms Sandys: No. They need other people in their lives. If the issue is that there are some people who are isolated and do not have supports, then the issue is, how do we enable people to have those supports? Giving them a guardian, taking away a right they may not have exercised but has been their right and placing it with somebody else, does not do anything for their life. It does not give them the supports, which is what they required in the first place.
Mr Winninger: What you are suggesting, as I hear it, is that these other persons would go far beyond the role of advocates, as proposed in the Advocacy Act, because not only would they be offering rights advice; they would also be making decisions for people. Does it make a difference, I would ask you, whether you call that person a guardian or not?
Ms Cole: It makes a distinct difference, because "guardian," by definition, as I think you were told earlier this week -- Bills 108 and 109 are about having power over people. I believe one of the ministry officials told you that on Monday or Tuesday. That is what it is. Having power over people cannot be a solution to self-determination.
Mr Winninger: Last, I know you actually at the time endorsed the conclusions of the Fram report. You were not a dissenting voice at that time, but according to your brief, since that time, and you mentioned hindsight, you have changed your mode of thinking on it. You feel you can accord more self-respect and dignity to the individual by avoiding guardianship. But in these cases we have seen -- I know you have probably encountered them -- of abuse, neglect and exploitation, I would ask you, do you not need someone with the powers of a guardian to deal with that where there are not nurturing family members or friends to do it for a person?
Ms Sandys: You are right, our own thinking has evolved on it. The discussions on guardianship have been going on for years and years, and over that period of time our thinking has changed, and that is one of the things we are dealing with now. One of the things we struggled with was to find a situation where giving somebody a guardian would in fact deal with the issue. If somebody is being abused, then that is a criminal act and he or she should not be, and there should be some mandatory reporting of abuse of any human being. People should not be able to be abused by other people, but we do not see the connection in appointing a guardian to deal with abuse. If there is abuse, stop the abuse.
The Chair: Ms Sandys, Ms Stone and Ms Cole, on behalf of the committee I would like to thank you for taking the time out to come and give us your presentation this morning.
Mr Poirier: Mr Chair, can I just add that in my seven years as a member, at public hearings I have never had such a short document open my eyes so much on attitudes towards the developmentally handicapped. It was excellent.
Mr Winninger: Excuse me, Mr Chair. You did acknowledge Ms Carter.
The Chair: There are time limits and you used the full time for the caucus.
Ms Akande: But if she was acknowledged --
Ms Carter: We have not had as much time as the opposition has.
The Chair: We are on a tight schedule. Each caucus is allowed four minutes.
Mr Poirier: We did not get a chance either.
The Chair: We are on a tight schedule. If we are going to get through the presentations that we have to work through in the next three weeks --
Ms Carter: But the time should be evenly divided, Mr Chairman.
The Chair: Pardon?
Ms Carter: I said the time should be evenly divided.
The Chair: It is. There were four minutes for each caucus. That is what was left. Thank you very much.
ASSOCIATION OF LOCAL OFFICIAL HEALTH AGENCIES (ONTARIO)
The Chair: I would like to call forward now the medical officers of health of Ontario. Good morning. Could you please introduce yourselves for the record and then proceed.
Mr McFadden: Good morning. My name is Tom McFadden. I am executive director of the Association of Local Official Health Agencies. With me this morning is a member of our executive committee, a member of our board of directors, Dr Colin D'Cunha, who is also the medical officer of health for the city of Scarborough health department.
We want to express our gratitude for being given the opportunity to attend here this morning and present our concerns and our recommendations relative to Bill 109, the act respecting consent to treatment. I am going to ask Dr D'Cunha to present the position of the association. Before I do, I want to describe very briefly the intent and mandate of the association.
ALOHA, as it is commonly known, is comprised of two sections, one representing the elected and appointed board of health members and regional councillors in regional government, as well as a section representing the medical officers of health in this province.
Our aims are, quite simply, to represent the common and consensual interests of public health units and departments in this province. We welcome the opportunity to address politicians and those in positions to make decisions on issues which we consider important to the operation of the public health unit and public health in general in this province. With that brief introduction I will turn this morning over to Dr D'Cunha.
Dr D'Cunha: As Mr McFadden has just stated, I am presenting on behalf of the medical officers of health, and consistent with the board direction and resolution adopted by the general membership in the June general body meeting.
Our concerns are specifically addressed around Bill 109, sections 8 and 9, which specify age 16 as the age of consent. Our concerns are driven by the fact that when an age of 16 is specified, people below the age of 16, as I will touch on later on in this presentation, will have to go through a detailed process, such as the whole business of rebuttal, getting consent through other means.
Our concern is more specifically that when you look at teen pregnancy rates in Ontario, as in attachments 2 and 3, Ontario has made major gains, as has Alberta, the two Canadian provinces thus far which do not have an age of consent specified in legislation. What is used is the principle of common law, where somebody is ascertained by the health practitioner in question as being capable or incapable of giving consent. Models may be considered, such as using age 12 or age 14, but there are concerns because a chronological basis of defining the basis to give consent is inappropriate. Clearly individual customization has to happen.
When you look at teen pregnancy rates in Ontario, they have been coming down since 1977. The statistics you have in attachments 2 and 3 are those collated by the Ontario Ministry of Health. Our concern is that should age 16 be mandated, we may end up seeing rates, as is shown on attachment 5, approximating those of the US or other jurisdictions which have specified age 16.
Most pertinent to note is the experience of Great Britain, where age 16 was written in as the age of consent. The national department of health over there advised medical practitioners that they could treat people under the age of 16. They went that route, and a couple of cases went on appeal all the way to the House of Lords, which is the equivalent of the Supreme Court of Canada.
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The other concern we specifically have is in the area of sexually transmitted diseases, and teens in Ontario are at risk, as attachment 4 points out. The rate per 100,000 of adolescent females in Ontario for the ages 10 to 14 has shown an increase in chlamydia -- I must point out that statistics on chlamydia were only collected since the mid-1980s -- and for other STDs they have been coming down to a plateau.
The final point, and then I am open to questions, is over the definition of "treatment" that is used in the introductory paragraphs to the bill. Our concern is that the definition of "treatment" is too broad. Where general health teaching and counselling may be interpreted as treatment, if the age of 16 is kept, with this general definition our staff will have to go through a cumbersome process of getting consent for treatment.
Mr Poirier: Obviously this thing of age really is important to you. Other medical professionals have come forward. I do not know why there would not be a consensus, if not a unanimous desire, from practitioners to be able to have a second look at that age of consent. It is not hard to put ourselves in your shoes to find out what it means, if it is written down in the law as "16." That chart of yours goes even further, I suppose, to STDs and adolescent females in Ontario aged 10 to 14. That can mean that at 10 we are far away from 16. Even 14 developmentally is a distance, but then this chart -- and I see chlamydia just rising like a rocket between 1985 and 1989 -- convinces me -- and I was before, but it adds to the conviction -- that it is extremely important that the government remove that reference to "16," because it is obviously evident that if "16" remains written down there, those people, as per your attachment 4, those adolescent females and young men who have other STDs will shy away, if nothing else, or the practitioner will shy away from being able to give them the type of treatment they need, especially in the circumstances where there are no symptoms. There has to be communication.
Obviously I am sure you would strongly support the elimination of that reference to "16," even though we did not have much of a chance to go through your documents. But if your feelings are identical to the ones we have heard so far and expect to hear almost on a continuous basis and with a consensus, if not a unanimous decision, could we hear you confirm that?
Dr D'Cunha: It is fair to say we have spoken with the Ontario Medical Association and we understand it is putting forward a similar position to remove the reference to a specific age. We also had meetings with the Ontario Ministry of Health, lawyers from the legal branch, in September, on the basis of which this brief was subsequently developed. Our concern is defining an age, because chronologically it is impossible to say someone is capable of giving consent or not and it is impossible to legislate sexual activity at any given age.
Mr Poirier: Exactly. We know how through time and humanity people have tried to ban certain things, but it just does not work. We might as well work along with how society works and try to best get to the young people and the medical people, to help them together. The way the law is currently written will hinder that. With that in mind, I again invite the government members to take this extremely important point back to the minister so that amendments can be brought forward to eliminate that.
Mr Chiarelli: I have a question for legislative counsel, for the assistance of the committee and also for the presenters. To what extent was that age arbitrary, and if it was not arbitrary, what were the factors that went into setting that age? Second, is there anything in the common law which points to a general consensus of age on this particular issue?
Mr Wessenger: I probably should refer this to counsel, but before I do so, I think we should indicate that it has been indicated by the minister that this is one of the areas about which we are interested in hearing from groups with respect to the whole question of age.
Mr Chiarelli: I am interested in hearing counsel.
Mr Wessenger: I will ask counsel to reply.
Ms Bentivegna: On your first question about the common law, there does not seem to be a consensus. As to the cases that there are with reference to age and young people, some older cases dealt with 18- and 19-year-olds when the age of majority was 21. The courts found that at 18 and 19 -- it was cases of surgery -- they were capable of consenting to treatment. More recently there have been a couple of cases dealing with young women and abortion. For example, a court case in Alberta said that a 15-year-old young girl had the right to make that decision, even without the parents' interference in the decision. There have not been that many cases, so I do not think one can say there is a consensus.
As to how the age of 16 was arrived at, it was looked at to see at what age a young person was more independent or more likely to be living on his or her own. It was felt that 16 would be an age that would be suitable because that is the age a person leaves school. For the presumption of capacity under the Substitute Decisions Act it was 16 and over. This was a way to dovetail in that other legislation. Under 16, it does recognize that there is capacity but that it would be decided on a case-by-case basis where the young person wanted to make the decision. If a young person did not want to make the decision, then there was no problem to be dealt with.
Mr Curling: In section 9, would you say that the doctors -- as you pointed out in your presentation -- find themselves between a rock and a hard place: that they would like to give treatment and may be restricted because of the law, so therefore in their own standards they are unable to give that kind of treatment? Could they be charged under their association for not giving proper treatment and yet the law restricts them?
Dr D'Cunha: That is certainly a valid point, Mr Curling. The concern most of us have is if you set in place a bureaucratic system of referral to an advocate, it makes the assumption first and foremost that an advocate is available, is capable of applying his or her mind to the individual circumstances that counsel has just alluded to and of coming up with a prompt decision. The practical reality is that when you have a 14-year-old, for example, be it in a health department clinic or in a private physician's office, by the time you get the advocate in the process it is going to be a couple of hours and I would be very surprised to see a 14- or 15-year-old hang around there while you go through this detailed bureaucratic process. I say this as a bureaucrat working for municipal government.
Mr Sterling: With regard to your third recommendation on page 2, that the definition of "treatment" be worded in such a way as to exclude the provision of information or general health teaching, I assume you are concerned that you are going to need consent to tell people what is good for them or what is not good for them as health care practitioners.
Dr D'Cunha: That is correct. For example, public health nurses who work in public health units on an ongoing basis, be it in the family planning clinic setting, be it in an STD clinic setting or be it in the schools or in the community, end up in a one-to-one encounter now and again with, say, a 14-year-old. To get into health teaching they would be required to go through this detailed bureaucratic process of getting consent to do simple health teaching.
Mr Sterling: You are talking about Bill 109. I would like some comment as to whether or not the interpretation is correct or not.
Mr Wessenger: I think I will ask counsel again. This is with respect to the matter of educational matters --
Mr Sterling: Yes.
Mr Wessenger: -- as distinct from the matter of screening tests, which I think was raised the other day. There has to be a distinction between the two, so just relating to education only.
Ms Bentivegna: If one reads the definition of "treatment," if one looks at the word "preventive," the purpose of the health information or the education is to prevent, let's say down the road, health problems, so in that way it might be caught by the definition. It is a possible interpretation in looking at the definition because there is "preventive" in the definition; anything done for a preventive purpose that is health-related.
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Mr Sterling: Can someone tell me what it is the intent of the ministry to catch in the preventive area? Is it a physical treatment that is the concern?
Ms Bentivegna: You would want to cover any type of treatment that was being proposed to a person, whether it was to prevent a certain condition or whether it was to alleviate a condition. You want to get at both, let's say if you need a certain type of procedure to prevent your condition from getting worse. It is just trying to define what a health care service is as broadly as possible.
Mr Sterling: Is there any attempt by the ministry to vet the advice an incompetent person is getting from a health care practitioner?
Ms Bentivegna: No. The intent is that where there is a decision needed from the person, that he or she wants a service or not, what we are trying to aim at is that at that point if a person is incapable of making that decision for himself or herself, someone else does it on his or her behalf.
Mr Sterling: So it is only if it is leading to a treatment, either a pill or a --
Ms Bentivegna: It could be something as basic as an examination, if the person, let's say, does not want to go, or if the person does not understand what the examination is for. Then it could lead later to whatever is proposed for that condition.
On health education, I guess because what we are dealing with in public health is more children under 16 or younger children in schools, those kinds of programs, it was not really intended because there is not really a practitioner-patient relationship. It is more that there is a group. But yet I think there is some concern from some parents that they want to know what their children are being educated on or what they are being told in the health care field. They might want to consent to or not consent, so there are two different issues there.
Dr D'Cunha: I just want to make an observation. A simple classroom demonstration of, "Use a condom to prevent sexually transmitted diseases and pregnancies," would be caught by this definition and we would have to go through a detailed process of getting consent, be it the school teacher or health professional who makes that presentation. That is how broad the definition is.
Mr J. Wilson: I have a technical question. Let's see if I am reading your graphs properly. If I take attachment 2, adolescent pregnancies in Ontario, 15 to 19 years, the way I read that graph is that the number of abortions in 1989 is twice the number of live and still births. That would read to me that there are about 14,000 abortions in 1989 and about 7,000 live and still births.
Dr D'Cunha: That would be correct. These are all from the provincial Ministry of Health's database. We have not made these up.
Mr J. Wilson: It is amazing. I asked my two colleagues here and I think we find the numbers a little astounding and unfortunate, to say the least.
Mr Wessenger: I would like to follow up on this whole question of age. As you know, under that act if a child refuses to consent to treatment there is a requirement that an advocate come in and advise him or her as to his or her rights. Do you have any recommendation with respect to an age cutoff with respect to that advice to a young person?
Dr D'Cunha: In general, from what I know from having studied medicine, it is difficult to put a chronological definition on when somebody is competent.
Mr Wessenger: I agree with you.
Dr D'Cunha: You have to keep flexibility. It is our belief that common law allows you to keep that flexibility to allow that individual determination.
Mr Wessenger: Let's assume the existing laws are in effect, or suppose the law is changed and there is no age aspect. We will give two examples. A 14 year old says to the medical practitioner, "I don't want the treatment." The medical practitioner then under the law as it sits would be compelled to call in an advocate. Then you could have a child, just to give you a difference, aged 10 who makes the same statement. In your opinion, should an advocate be called in for both the 10-year-old and the 14-year-old? If it was a four-year-old you would obviously say no, an advocate should not be called in for a four-year-old or a six-year-old.
Dr D'Cunha: If the 10-year-old has otherwise shown understanding of competence and if one is willing in a court of law to accept the testimony of the 10-year-old as being such, then I think, in any case, you should have some system of an advocate to look at the issue, and for this exceptional circumstance, but you do not legislate it in with an age cutoff.
I see what you are getting at. The bill is generally well intentioned to allow for these roadblocks to be dealt with. Where you have a situation where somebody clearly needs treatment, and in this individual circumstance you have to examine whether the individual has fully understood the implications or not, we have no qualms with that. Our qualms are specifically around the specific age because then you have set in place a bureaucratic motion.
Mr Wessenger: To follow up on that, if there is no age aspect, you as a physician could in some circumstances determine that a 10-year-old would have the capacity to consent to certain types of treatment. Would that be fair to say?
Dr D'Cunha: That would be correct, but in this grey area it is fair to say that most physicians in this province would also speak to the parents. You may be able to quote the exception rather the rule -- I am not going to put out a number deliberately -- but I think I can count on my fingers where you will have a variance of viewpoint or will not be able to solve that situation, given a few days or a few hours, depending on the situation at hand.
The Chair: Any further questions or comments? Dr D'Cunha and Mr McFadden, on behalf of this committee I would like to thank you for taking the time out of your busy schedules to appear here this morning.
FACULTY OF MEDICINE, UNIVERSITY OF TORONTO
The Chair: I would like to call forward the next presenter, Dr Fred Lowy. Would you please introduce yourself for the record and then proceed.
Dr Lowy: My name is Frederick Lowy. I am the director of the Centre for Bioethics and a professor in the department of psychiatry at the University of Toronto. I was dean of medicine at the University of Toronto from 1980 to 1987. My MD degree is from McGill University in 1959. I am a fellow of the Royal College of Physicians and Surgeons of Canada. In addition to my university responsibilities, I practise psychiatry at the Toronto General division of the Toronto Hospital. I am a member of the National Council for Bioethics and Human Research, a national body, and of the ethics committees of both the Canadian Medical Association and the Royal College of Physicians and Surgeons.
My presentation today is on behalf of the faculty of medicine of the University of Toronto. I will make the following recommendations: (1) that section 10 of Bill 109 should be reconsidered, as well as related sections of Bill 74; (2) that paragraph 1 of section 15 of Bill 109 should be dropped altogether, or in the alternative should be drastically revised; (3) that section 22 of Bill 109 requires clarification. With your permission, I would like to speak to those points.
In general, the legislation under consideration in our view is important, timely and constructive. It deserves strong support inasmuch as it empowers vulnerable persons, provides legal authority for substitute decision-makers and for advance directives for health care, and provides a non-judicial mechanism for conflict resolution in the Consent and Capacity Review Board.
Unfortunately, in our view these bills as drafted contain serious shortcomings. These shortcomings are of such magnitude that unless they are corrected there is a risk that the legislation, which is so well intended, may do more harm than good. Therefore, we strongly urge that a few important changes be made so that this valuable legislation can command the enthusiastic support it will need from all persons involved in our health care system.
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The problems, as we see them: first, Bill 74 and Bill 109, section 10: We have serious concern regarding some assumptions that seem to underlie the proposed legislation. Whether it is intended or not, there would appear to be an underlying assumption that as a rule, the rights of vulnerable, incapable persons are best protected not by their families or health professionals but by special advocacy services provided by strangers to the patients. The untested implication of the mandatory advocacy requirement is that the majority of family members, nurses and physicians are not to be trusted to advocate patients' best interests.
I would like to stress that advocacy as a process to protect the rights of vulnerable persons is not in dispute. The autonomy and rights of all persons must be respected and protected, including of course those who because of incapacity are not able to refuse or consent to treatment themselves. In other words, we have absolutely no quarrel with the process or the need for it.
What is at issue is the mandatory, and I stress mandatory, advocacy for all incompetent persons who come or are brought to health care practitioners and facilities. Specifically we are concerned that the need for mandatory advocacy has not been established, that the legislation as drafted will require an extensive and intrusive new bureaucracy in health care, that necessary treatments will sometimes be delayed, that non-productive paperwork will deflect nurses, physicians and others from direct service to sick persons, and that unnecessary and perhaps substantial costs will be added to an already strained health care budget.
These points are discussed more extensively in a paper written by my colleagues Sujit Choudhry and Peter Singer, entitled "Ontario's Proposed New Laws Regarding Consent to Treatment," which will shortly be published in the Canadian Medical Association Journal. I believe Dr Singer included this paper in the material that accompanied his presentation to you on Monday.
It is our strong recommendation that Bill 74, the Advocacy Act, and section 10 of Bill 109 be reconsidered. As Dr Singer suggested on February 10, it would seem more reasonable in light of the above concerns to provide advocacy services to all persons who request them. As well, a carefully controlled and evaluated trial of mandatory advocacy for persons incapable of refusing or consenting to treatment might well be justified in a small designated area. However, expansion of such services to all such patients in Ontario can only be justified if such a trial confirms a need for these services and demonstrates that they advance rather than retard the welfare of the persons concerned.
I would like to turn to Bill 109, paragraph 1 of section 15, and related subsections of Bill 108, namely, subsections 47(6) and 56(5). These subsections as presently drafted pose a potential threat to important and responsible research in Ontario to the detriment of some of the very groups in our society whose interests the legislation is intended to protect.
Paragraph 1 of section 15 of Bill 109 is confusing and ambiguous as written. It is not clear whether its intent is to indicate that the bill does not deal with medical research involving incapable subjects, that is, leaving the law regarding such research unchanged, or whether its intent is to forbid procedures whose primary purpose is research. There is a world of different between the two.
The Minister of Health, the Honourable Frances Lankin, has been quoted to the effect that the legislation we are considering today is not intended to deal with medical research and that legislation will be introduced in the future to deal specifically with research. If this is indeed the government's intent, may we conclude that paragraph 1 of section 15 is intended simply as a disclaimer to indicate that Bill 109 in no way affects research? If this is so, it would seem advisable to either make this perfectly clear, which it is not right now, or even better, to omit paragraph 1 of section 15 altogether.
If this is not done, if the legislation is passed as written, and if that clause is interpreted as prohibiting research involving incompetent persons, the effect could be most unfortunate. Progress in, for example, anaesthesia, geriatrics, neurology, neurosurgery, paediatrics and psychiatry, as in all other fields of medicine depends on research which at times must involve persons who suffer from the diseases for which treatment is sought. It is neither scientifically valid nor ethically acceptable to apply to sick persons treatments that have not been adequately investigated. For example, when a potential treatment for advanced Alzheimer's disease or dementia due to AIDS or certain childhood disorders reaches the stage of development where clinical application seems reasonable, it is still necessary to test this proposed treatment in patients who suffer from the condition we are talking about.
In my examples, these patients would not be competent to consent to be research subjects in a controlled randomized clinical trial. In most jurisdictions throughout the world, following accepted international codes that govern ethical medical research, incompetent persons who are unable to give consent themselves may participate as subjects even in non-therapeutic research under certain rigorous conditions that include, of course, the consent of a legal substitute decision-maker.
You may be interested to know that the Law Reform Commission of Canada, in its 1989 paper entitled Biomedical Experimentation Involving Human Subjects, agreed that a total ban on non-therapeutic experimentation involving children and mentally impaired persons should be rejected, as in fact it is throughout the world, pretty well. The Law Reform Commission of Canada's recommendation 4, on page 42 of its document, reads as follows:
"The commission recommends that the legality of non-therapeutic biomedical experimentation involving children should be recognized in a general federal statute on experimentation, provided that all the following conditions are met:
"(a) the research is of major scientific importance and it is not possible to properly conduct it using adult subjects" -- in this case they are talking about children -- "capable of giving consent;
"(b) the research is in close, direct relation to infantile diseases or pathologies"; -- that is to say, the research deals with problems that involve children.
"(c) the experiment does not involve any serious risks for the child;
"(d) the consent of a person having parental authority and of an independent third party...is obtained; and
"(e) where possible, the consent of the child should be obtained. Moreover, whatever the child's age, his refusal should always be respected."
They go on, in recommendation 5, with almost identical wording to refer to research involving mentally deficient subjects. By logical extension, other persons incapable of giving consent themselves who suffer from neurosurgical, psychiatric or other disabilities should, under the same rigorous conditions, be permitted to participate as research subjects.
I should point out that what the law reform commission recommends for Canada is in fact already the law in a great many countries in the world. It is also important to stress that the National Council for Bioethics in Human Research and the various university and hospital research ethics committees throughout Ontario have as their major objectives the protection of the rights and interests of human research subjects. I know of no evidence whatever that they are failing in this task and that legislation such as that proposed is required.
If Bill 109, paragraph 1 of section 15, and Bill 108, section 47, were interpreted to mean that no non-therapeutic research can be conducted on persons who at the time are not capable of giving consent and if they did not previously specifically authorize participation in a particular research project, the effect would be to make Ontario children, for example, or persons with AIDS dementia or persons with Alzheimer's disease and a host of other conditions, therapeutic orphans.
One of two things could happen. You could either say that no research can be done on such people anywhere in the world, in which case of course there would be no progress in those conditions, or alternatively, we would be in the ethically untenable position of using in Ontario the products of research conducted elsewhere which would have been illegal in Ontario. Ontario clinical scientists working in these areas would also no longer be able to do so. Successful scientific teams assembled with great difficulty at internationally respected universities and hospital research institutes -- for example, the Hospital for Sick Children right here -- would be broken up. Our patients, our institutions and our reputation in Ontario would suffer.
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I need hardly remind you that nowadays participation in research projects is by no means always regarded as a burden. For example, advocates of persons who are HIV positive or who have AIDS itself have successfully argued for easier access to research programs where they would have at least a chance to benefit from drugs or procedures that might turn out to be beneficial. If they would have gladly consented to participate in such studies while competent, why should their right to do so disappear if they should, because of progressive illness, become incompetent?
Similarly, let's consider the reason for legalizing advance directives for health care in the first place, which this legislation would so admirably do. The purpose is to empower people, to advance their autonomy, to make it possible for their wishes and values to be respected even after they are no longer competent to insist on this themselves. Proxy directives, such as power of attorney for personal care, permit substitute decision-makers who know the person's values and wishes to authorize procedures to which he or she would have likely consented if competent. Should not a socially responsible person who, while competent, would likely have agreed to be a research subject, have the right by proxy to participate in rigorously controlled socially responsible research if he or she becomes incompetent to give personal consent?
What is the solution? A very simple solution, we think: We recommend that paragraph 1 of section 15 of Bill 109 be omitted altogether. Further, we recommend that Bill 108, subsections 47(6) and 56(5) be carefully reviewed.
I would like to turn briefly to Bill 109, section 22. The problem with this section lies in the choice of the words employed and how these may be interpreted. Section 22 permits emergency treatment to incapable persons if they are "likely to suffer serious bodily harm within 12 hours if the treatment is not administered promptly." I would like to emphasize "likely," "serious," and "12."
How likely is "likely"? If it is 40% or 30%, should treatment be withheld, or does "likely" mean 50% or more? What is "likely"? Is there not a danger of undesirable undertreatment as well as undesirable overtreatment, against which this clause would appear to be directed?
What about the person who is in severe distress, for example in pain or in the throes of a panic attack or very short of breath who is nevertheless not "likely" to suffer "serious" harm? Should that person be required to suffer while efforts are made to find someone who can give substitute consent, when comfort-producing treatment is ready at hand? Clearly, in the interests of compassionate care of persons who are incapable of giving consent, the definition of emergency treatment should be revised to make these desirable treatments possible.
In conclusion, in our view the legislation under consideration is laudable in many respects. However, we believe it would be greatly improved if paragraph 1 of section 15 of Bill 109 were omitted and if Bill 74 and section 10 of Bill 109 and section 22 of Bill 109 were carefully reviewed. This would ensure that the intent of the legislation, the empowerment and welfare of vulnerable persons in Ontario, is not subverted, as we believe could be the case were these bills to become law as presently drafted.
We would like to assure the Minister of Health of our readiness to participate in discussions leading to the proposed future legislation dealing with medical research.
On behalf of the faculty of medicine at the University of Toronto, I would like to thank you for the opportunity to make this presentation.
Mr Chiarelli: Dr Lowy, I appreciated your presentation. It was very thoughtful and technical and I am sure it will be helpful to the committee. You indicated you thought the legislation and the thrust of the legislation were laudable. However, when you call into question section 10 and section 22 I think you are going right to the heart of the legislation, which is what I want to do with my question. I am particularly concerned about how this legislation would address the situation of schizophrenics, and the question of medication and what happens when a schizophrenic feels good after having received the medication and starts going off the medication and then the paranoia starts coming back again. How should a medical practitioner deal with the situation of the returning psychosis of a schizophrenic going off medication?
Dr Lowy: I think that is a very important question. It goes to the heart of the balance that needs to be struck between the rights of the individual in a legalistic sense and the welfare of that person, to say nothing of the welfare of society. The legislation as it is written does indeed protect the legal rights of the individual but it fails to protect the welfare of that person, and the welfare of the family and of society at large.
There is no doubt that we know enough now about, for example, schizophrenia, or for that matter the manic phase of bipolar affective disorder, that we can predict with a fairly high degree of certainty that most persons suffering from these disorders will have their symptoms controlled by medication and other treatments currently available. We also know that in a very high proportion of cases, if left untreated, their psychosis will return full blown with usually unfortunate consequences for themselves, for their families and sometimes even for other persons.
I think ideally a medical practitioner who understands the needs of the patient -- this person -- and also understands the rights of that person will be able to make a determination whether or not that person is capable of giving consent to treatment. If the person is capable of giving consent, then clearly that person's decision is final once the alternatives are carefully explained to the person. If the individual is not capable of giving consent by dint of the illness, then I believe the welfare of the person and of others requires that treatment be facilitated rather than blocked. I am afraid the present legislation could in some instances seriously delay necessary treatment.
Mr J. Wilson: Thank you, Dr Lowy, for appearing before us and interrupting your busy schedule. I know you have appeared at committees in the past. You are a good citizen in terms of keeping us on our toes here at Queen's Park, and particularly at keeping government on its toes, by participating in these committee hearings.
You mention the mandatory advocacy for all persons deemed to be incapable. My question is to you but it is also to the parliamentary assistants. Is there a model in place somewhere now in the world for this type of mandatory advocacy for all persons deemed to be incompetent? I am worried particularly about the hospital setting, in the emergency room setting. Is that in place somewhere now and is it operating?
Dr Lowy: I am afraid I cannot answer the question. I am not aware of any other jurisdiction where this is in place.
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Mr J. Wilson: Mr Chair, would the parliamentary assistant like to try that one?
The Chair: Mr Malkowski?
Mr Malkowski: I would like to refer this to the parliamentary assistant to the Minister of Health.
Mr Wessenger: Yes, we do have this system, patient advocacy, in effect under the Mental Health Act right now in Ontario.
Mr J. Wilson: Well, it is obviously not the same system or we would not have people here complaining about the mandatory advocacy.
Mr Wessenger: It is basically the same system. We are extending it.
Mr J. Wilson: Do you understand this bill to be the system that is in effect now in emergency rooms? I do not recall going into an emergency room and being told I could have an advocate.
Dr Lowy: I think there are elements of the mental health legislation that are carried over to this proposed legislation, but I would differ; I do not think they are the same. In any event, they only cover a portion of the population, namely, those who fit under the Mental Health Act.
Mr Wessenger: I think it should be clarified. I am referring to the mental health field only, not to the general health field, with respect to the question.
Mr J. Wilson: My question was more advocacy in terms of someone deemed incompetent who is not necessarily a psychiatric patient. We have had concerns from the medical profession, and again from Dr Lowy, indicating the bureaucratic and paperwork burden and the delay of emergency treatment that this could cause. Is there anything that goes to this extent, covering all cases of incompetency?
Mr Wessenger: I guess you are asking if there are any other jurisdictions that have used this model. I think not.
Mr J. Wilson: Okay, well that is all I am asking.
Mr Wessenger: This is a new model.
Dr Lowy, for my own information, I would like to know if there is research being carried out in Ontario at the present time using incapable people and young children as subjects.
Dr Lowy: Yes, indeed.
Mr Wessenger: Could you give some examples of what type of research is being done?
Dr Lowy: I think there are literally dozens, if not hundreds, of projects presently being done at the Hospital for Sick Children and at the Children's Hospital of Eastern Ontario, that involve children whose participation in research is consented to by parents or guardians. Research is taking place at the Clarke Institute of Psychiatry, at our provincial psychiatric hospitals, in the wards of our general hospitals, in the wards of our neurological and neurosurgical units, etc. All these projects have been approved by the research ethics committees of those institutions, and in many instances as well by the human investigation committees of the university concerned. That is a double committee -- both the hospital and the university committee have passed on them.
I guess the dividing line between what is contentious and what is not contentious is non-therapeutic versus therapeutic research, if I may take a moment to explain the difference.
First of all let me say that medicine progresses in an uneven fashion. What we believe is best today can be superseded by what may be discovered tomorrow. But how does something that is discovered get translated into clinical practice? Nowadays, in contrast to what used to be, there is a requirement that any new treatment be well investigated in the laboratories using research animals, and then using populations of healthy volunteers in small groups, then selected groups of persons who are afflicted by the condition you are trying to treat. Only if all these steps are satisfactory would a treatment then be introduced on a general basis for people with that condition.
Each of the steps is important, including the last one. Even with treatments that seem to work very well in animals and that are proved to be safe because healthy volunteers have undergone these procedures, you cannot really tell if they are going to help the people with the condition involved unless people with that condition try it.
You can do it in a sense of using compassionate innovative treatment where you think someone may be helped by it. You are not sure, but the treatment is available, has been reported as promising in some other country, and you want to try it. Right now we have mechanisms for permitting that, but that is really not good enough, because to be certain that a proposed new treatment is effective, you really have to subject it to proper scientific study.
That includes taking precautions against the possibility of bias on the part of the investigator; that is, investigators like to prove what they set out to prove. You want to make sure that does not happen. You want to make sure that people who get the treatment are compared appropriately with people in very similar circumstances who do not have the treatment to see if the treatment in fact is better etc. A whole system of randomized clinical trials has developed over the last 30 years and been accepted worldwide. The only way you can then be sure that what you are proposing to do that is new is any good and safe is to try it in a controlled fashion; namely, research.
Curiously, whereas we now have the authority, without asking anybody, to try something new which may help the individual patient physicians are treating, we do not have the authority to do this in an organized, controlled fashion. I think that is correct, by the way, because any research project has to be approved by an ethics review board. That is entirely proper. If the research proposed is likely to be of benefit to the individual subject, we call it therapeutic research. There is no certainty that it is going to help, but at least there is a chance, and that is why you give it to this particular population. You have a control group that does not get it at this point until you are sure the treatment will work.
There is also research where you are not even sure it is likely to help, although there is some reason to believe it will. It is non-therapeutic. You cannot guarantee the individual subjects are going to benefit, although the class of people with that condition might; for example, a treatment that requires testing on persons with Alzheimer's disease. These people may be in their 70s or 80s. They themselves may have had so much brain damage from their disease that there is very little likelihood they personally would benefit, but the group of people with Alzheimer's disease might benefit. The only way that group ever will benefit is if new treatments are found. Whereas there is no problem whatsoever, as far as I know, with a properly executed and approved therapeutic research, there remains doubt whether non-therapeutic research that does not benefit that particular individual should be permitted or not. In the law reform commission recommendation I read into the record the conclusion is quite clear. They think it should be permitted under certain rigorous conditions. The legislation, as proposed here, would not permit that.
The Chair: We have to move along now.
Mr Wessenger: Can I just get some clarification from counsel with respect to the question of section 15, whether counsel's opinion is that it in any way restricts research? I think that would be useful for the committee.
Ms Bentivegna: No. Section 15 says, "Nothing in this Act authorizes a health practitioner to perform any of the following procedures on a person who is incapable with respect to the procedure," the first one being, "A procedure whose primary purpose is research." In no way is it to prohibit because there is further study being done in this area. Therefore, that is why we used the words does not authorize, because we did not want a substitute for an incapable person to point to Bill 109, the Consent to Treatment Act, which is more for therapeutic treatment, to say he was giving consent for research. That authority has to come from elsewhere, on the same basis as it is being done now.
Dr Lowy: I am reassured to hear this legal opinion, that this would not prohibit the kind of research I am talking about. But I suggest the language could be interpreted otherwise. Since it says that it does not authorize, it could be interpreted as prohibiting, and if the intent is that it simply disclaims that this bill in any way deals with research, then perhaps a clarification of that type would be useful, or leave out that section altogether.
I also point out that the other two clauses of that section deal with activities that are actually illegal at the moment. By association, if you put research in the same section as two illegal paragraphs, surely somebody is going to interpret that as meaning that paragraph 1 is just as illegal as paragraphs 2 and 3, by association. That may not be intended, but I suspect somebody is going to interpret it that way, with dire consequences.
The Chair: Dr Lowy, on behalf of the committee I would like to thank you for giving your presentation today.
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DAN FERGUSON
The Chair: I would like to call forward the next presenter, Dan Ferguson. Good morning. Could you please identify yourself for the record.
Mr Ferguson.: I am here today to speak only to the provisions of Bill 109. The first thing that occurred to me before I came, when I looked at your agenda, was the large number of prestigious groups and individuals appearing here, Dr Lowy being an example. I cannot quickly tell you who I am or where I come from, as he can, by reference to a position, so I would like to take a couple of minutes to answer those questions. I am sure some of you are already wondering who Dan Ferguson is, where he comes from, what his biases are, why he is here and what he knows about the subject.
First of all, I am here as an individual. I represent no one but myself. In terms of where I come from, I would like to tell you both my professional and personal involvement in this area. I am a member of a large King Street and Bay Street Toronto law firm. I hope you will not stop listening just because I have told you that. I have practised there for 20 years. Most of my practice in this area involves defending public hospitals in malpractice suits. Often, as you know, consent or lack of it is an issue. I also, whoever I am representing, give legal advice to doctors, nurses, children's mental health clinic organizations, the Ontario Cancer Treatment and Research Foundation and a number of walk-in clinics.
For many years I defended actions against all the provincial psychiatric hospitals. I have also, on a number of occasions, represented the Ministry of Health in lawsuits against the ministry. On occasion I receive calls from ministry officials asking my advice and on many occasions I am in the position of receiving calls at any time of the day or night from hospitals and care givers who ask questions like the ones Dr Lowy was putting to you. I suppose you might think at the outset that I would have an institutional bias, but I should also tell you that I represent patients who want to sue doctors and nurses in hospitals -- not the same ones I defend.
As a private citizen, I would also like to tell you that all my life I have had a tendency to favour the underdog. As a quick example which would be meaningful to some of you, in my neighbourhood a few years ago there was a terrible controversy about a group home for ex-convicts. Most of my neighbours were involved in opposing it, and very successfully so. In response, after a lot of thought and a lot of talking, I set up a neighbourhood committee. It took us four years, but what we did was open that same project which had previously been opposed. That is apt here, I think, because one of the members of the committee I put together was Frances Lankin.
Closer to this area -- I think all of you are in a similar position, to more or less the same extent -- I have been a patient. I have an aunt who is very elderly who can sing songs from the 1920s but does not know where she is or why she is there. I have two grown children whom, like you, I have escorted at all hours of the day and night to emergency departments and faced the kinds of problems some of the people are going to address to you. I have parents in their mid-80s who have the usual panoply of health problems. Sometimes they have difficulty understanding and getting attention, and sometimes not.
I have a cousin who is a schizophrenic. I have taken her in the middle of the night, kicking and screaming, to hospitals. I have had the experience of phoning the police who would not come, the ambulance that would not take her, and going to the hospital that did not want to treat. Sometimes I have taken another friend to the hospital and have thought that what they wanted to do was much too aggressive. I have seen both sides of that. I also have in my extended family young infants who are now growing older who have been incapable from birth because of congenital or who knows what kinds of problems.
What do I know about the subject? I guess I know a little about it, because of what I have told you already about my work and my personal experiences, but without going into it, I think I can also honestly tell you that I have written and published as many papers and given as many speeches as any other lawyer in the province on this subject. At one point I also had the privilege of serving on the ministry consultation committee that preceded the presentation of the bill you are looking at.
The next question I suggested you probably had was, why is he here? Last week somebody asked me that. I was at a meeting at the Hospital for Sick Children discussing this bill, actually, and somebody at one point turned to me and said, "Why do you want to go anyway?" I was not sure whether I should infer from her comment that she thought that I had a bias, a vested interest, that it was worth money to me, or whether she thought that there was no point because the juggernaut of the legislative process was going to pass the thing anyway. I was not sure what to make of that, but let me tell you why I did come here.
I came here for two reasons. First, I came here because I care about this legislation; I care about the issue. Like you, I would like to see this done right. We cannot do it right the first time, but I would like to see it done right before we put it into force.
The second reason I am here is that, perhaps unlike the colleague who asked me that question this week, I have a great faith that laypeople like you -- that is, not doctors, lawyers or bureaucratic gurus -- can decide whether the car will work without knowing all the mechanisms that are inside it. I think you will be persuaded by the end of your hearings that this bill will not do what you want it to, that it will not work the way it is supposed to and that it needs, as Dr Lowy said, some more thought.
I think you will also recognize -- it may have already occurred to you because of the people who have come here -- that this is not a partisan subject. I was pleased, I might say, that the tenor of your meeting, which I watched for only an hour beforehand, was much different from the last time I came to this building, when the issue was only partisan, as far as I could tell. But this is not a partisan subject. There ought to be nothing to do with politics or indeed, except in rare cases, any partisan issue because of the side of the fence the person is on. I think we are all looking for something that will work.
While my friend earlier in the week may have thought it is against all odds that I come here to persuade you that this will not work, I guess I can also say, only half-jokingly, that when a number of you ran in the last election I will bet a lot of friends told you it was against all odds that you were doing that, so I take hope.
What do I want to say about Bill 109? I am concerned because, as I understand it, you have six bills on your agenda. They are lengthy, complex and technical pieces. Frankly, I think you have too much on your agenda. I am concerned that if I go into the line-by-line issues I will leave you with nothing but the recollection of some guy sitting here going through the line-by-line issues. I have filed something in writing in which I did go through those issues, but I would prefer today not to talk about that and to leave that to you, if you have time to read it. I would rather speak to you on a more general level.
I want to leave you with some general thoughts. I would like to start, because I know nothing about your preparation, with how the bill works. I have an abiding concern that people in your position only hear people talking about specific shortcomings or strengths but do not have a sense of how it would work. Perhaps I could ask whether the members of the committee have with them Bill 109 so we can look at it.
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The Chair: I believe all members have copies of the bill.
Mr Ferguson: What I would like to do, to tell you how I think it works and in the process take the opportunity to make some comments on some of its provisions, is just take you through one example. It is not an extreme example, I do not think. It is not a tough case like the under-16-year-old. It is not a tough case like the dramatic psychosurgery situation.
Let's take an easier one. Let's pretend you are in your constituency office in Peterborough, Ottawa, Hawkesbury or Guelph and you get a phone call from a neighbour who tells you that your Uncle Fred has had an accident. Your Uncle Fred is 90 years old. He lives with his wife and his wife is away. The neighbours call you. Fred likes you. Anyway, you rush to the hospital and you arrive just as the ambulance arrives with Fred and what you learn quickly is that Fred fell in the shower and broke his leg. Indeed, his leg is quite crooked. It is not a matter of it being cracked; it is definitely broken. What I would like to do is follow through what might happen in that scenario, by reference to the provisions of the bill, to see how the bill would work.
First of all, you are at the door of the emergency department. Fred is there, the ambulance attendants are there and maybe the neighbour is there too. I should add to the facts that for a number of years, not quite as bad as my aunt, but to some extent Fred has been confused. Some days he is there; some days he is not. Some days he is in the present, but not to his immediate surroundings. That happens to be the case today. Today Fred is cantankerous. Fred does not want to go into the hospital. Fred wants to go home and watch the Olympics on television. You tell him he has a broken leg and he says: "It's not bad. I want to go home because they're having the downhill skiing in 20 minutes and that's more important to me than fixing my leg."
Let's look at the act. If you look at subsection 19(2), it says that a person who is 16 or more and objects to being admitted to a hospital cannot be admitted unless a guardian appointed under the other bill consents. So you cannot get Uncle Fred in the hospital. I suppose you could argue under section 22 that it is an emergency, but for reasons we do not need to go into but that Dr Lowy hinted about -- serious problems within 12 hours and so on -- it may not be an emergency. Maybe nothing permanent or serious will happen to Fred if he waits out there in the ambulance for a few hours or a few days.
In any event, because you can obviously amend that, let's assume we get him in the hospital. What do we do next? You meet the young, tired but conscientious and caring emergency physician. What is she supposed to do? What she is supposed to do is start with section 4 of the act. Section 4 says that she may not administer any treatment unless she decides the person is capable and the person consents, which is not our case, or she is of the opinion that the person is incapable and somebody else authorized by this bill does consent.
What she then does, as I understand it, is go to section 9. Section 9 says she must assess Fred's capability by reference to certain prescribed standards and procedures, which we do not have. I take it they are going to be in the regulations. But let's suppose she does that and let's suppose she assesses Fred as not capable of making a decision about fixing his leg.
By way of an aside I would ask you to query whether -- whatever the standards and procedures are that may be prescribed; there may be a whole lot of them but let's assume there is one list -- you think one list will be appropriate in deciding this case as opposed to a case involving a kidney transplant, as opposed to a case of psychosurgery, as opposed to a case where Fred wants to go down and get his prescription changed for his glasses, because if you go to the end of the bill, as you know, this also applies to ophthalmic dispensers and denturists. One of the things that occurs to me is that this list does not really seem apt to those latter situations.
In any event, let's assume this young emergency physician, who is up to date and has read this, has assessed Fred as not capable. What does she do then? She cannot, because of section 4, give any treatment until another person has given consent in accordance with the act. I suppose you could then still go back to the emergency section, but for the same reasons Dr Lowy mentioned, I do not think this is an emergency. Section 22 says it is only an emergency if within 12 hours the person will suffer serious bodily harm. The fact is she says, "You could set this tomorrow or next week; no big difference." Actually what she plans to do is straighten it out and book him for surgery in a couple of days and have somebody come in and take it apart and try to put it together more expertly. But he will not suffer any serious bodily harm. He will hurt for a while, and as Dr Lowy said, you cannot give Fred any medication either because that is treatment.
What does she do? What she does is start through the process of getting substitute consent, so she goes to section 10. Section 10 sets out the initial rules she must follow. First, she must advise Fred that she thinks he is incapable, and second, she must give him a written notice saying he is entitled to meet an advocate and could also, if he wants, go to this board. She must also notify an advocate. I presume she phones one. You will note under subsection 10(2) that an advocate is to come promptly to meet Fred, which is desirable, but in Hawkesbury or Peterborough or Guelph in the middle of the night I do not know where this advocate comes from or how long you have to wait until this person gets there so you can be part of this. I am concerned this may not work.
In any event, under subsection 10(6) it says that she cannot give any treatment until that advocate comes and speaks to Fred and tells him his rights, or you can go to the board, which is not very practical. So she says: "Will you please sit down? The advocate will be here. In the meantime we're going to leave Fred here in the hall, and I'm sorry, I can't give him any painkiller. Maybe you could talk to him about the Olympics."
Let's assume the advocate does come and let's even assume it is promptly. Maybe the advocate is in the hospital. Let's also assume that we are lucky and Fred does not want to go to the board to dispute his incapacity, that he either does not understand what she is telling him or he says: "I don't want to go to any board. I want to stay here in the emergency department and watch the Olympics on the TV."
What does the physician do? The physician goes back to section 4 and says, "All right; I have to find another capable person who is eligible under the bill to be a substitute." What does she do? She, the physician, goes to section 16 and under section 16 there is a list of people in seniority who are entitled to make a decision on behalf of Fred. You will note there are some immediate problems at the beginning of the list because I do not know how you or this physician are to know if these various powers of attorney and so on exist, or if they do exist, what they say. We are told that some day they will be accessible on our health card, but as far as I know that is not the case yet. I am not sure how they sort that out. If you suspect or know there is such a document, I do not know how you find it.
In any event, let's assume we do not get hung up on that, because there is no reason to believe there is such a document. She then goes through this section and looks at subsection 16(2) and it says that she, the health practitioner, must make a reasonable inquiry as to who on this list exists and she must determine, from among those persons, who is entitled to give or refuse consent. You will notice in the next subsection, subsection 16(3), that she must also assess whether that person is, first, over 16, and second, is himself or herself capable. So the doctor must perform an assessment of that person's capability. I do not know whether she has to apply the criteria that are required in section 9 and will come in the regulations, but if they include visual observation and so on, we have a problem if the wife, who we know exists, cannot come down.
In any event, that is what this physician has to do. She looks down to subsection 16(5) and she must determine who is available. I note there is no provision here that she can delegate this task. It says she must do it. I query how many emergency physicians are going to get on the phone and start looking for the relatives and assessing how old they are and what their involvement is. How long will this take?
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Meanwhile, Fred is in the hall. Fred's wife is in Florida with another relative. She likes to go to Florida. She enjoys Florida. Fred does not. So she is in Florida. You explain this to the physician. The physician quickly realizes that on this list Fred's spouse is the closest relative, at the top of the list. She is the one she has to find. What if she cannot find the wife in Florida? What if she is out on a two-day jaunt to Disney World? What if she is not sure on the phone if this spouse is capable? This is difficult. You have elderly people and long-distance phone calls. You announce the person is in the hospital. The person is excited. This gets difficult. This is why people phone me; these are the reasons. There are not easy answers.
Let's suppose she sorts all this out and decides, "Yes, I've spoken to the right person," whether it be you, or if it is appropriate, the spouse, and gets instructions. Well, it is not quite that easy. That is not the end. We then go to section 17. Section 17 says that before the spouse, or you perhaps if you are the first person on the list, can give consent, you must make a statement, and section 17 sets out four things you must say. You must say what your relationship is and that you have no reason to believe Fred would object to your doing it. You must say there is nobody higher on the list you know about who should be called in. You must say you have been in personal contact with the person in the preceding 12 months. I query what "personal contact" is. What if the wife has been in Florida for 13 months? Can she say she is in personal contact because she phones and writes Fred, or is she now excluded? Another phone call to the lawyer.
In any event, we go down to section 18, assuming that the person eligible and available can say all those things. Under section 18 that person, the substitute, now is to be told everything that in the normal course would be told to the patient to make a decision. What does the substitute do? The substitute has to take some steps too. The substitute is supposed to take into account what is in section 14, and section 14 in a very long column sets out the principles which are to guide this person in making a decision. I would like you to read some of them, but I will just mention a couple. The wording of them is instructive.
Paragraph 14(1)1 says that if you, the substitute, know the incapable person has a power of attorney, you have to follow that. I am not sure what happens if you cannot find it.
Paragraph 14(1)2 is interesting to read. It says, "If the person" -- that is you -- "does not know of any such instructions, he or she shall act in accordance with any wishes applicable to the circumstances that he or she knows the incapable person expressed, orally or in writing, when capable, and believes the incapable person would still act on if capable." Now, the first thing that occurs to me is that maybe you can understand that if it is handed to you, but I do not think the average adult in this province who, I am told, still reads at or below the grade 12 level is going to know what the hell that means. They are not going to understand that.
It goes on. As you can see, it goes on for a long column of things and at the end it sets out an additional four factors that are to be taken into account. This is about three times the length of the Mental Health Act principles, which nobody pays any attention to even now. In any event, this is not a crisis. Imagine if we had a crisis. Imagine if you have a real emergency and you are the substitute or the substitute is some 20-year-old adult trying to deal with his or her child and is handed this, either in this language or in some layman's pamphlet. What is their reaction going to be? Are they going to be offended that you suggest to them that this is the way to decide how to care for their relative, their daughter, their father, or are they just going to be totally confused, or are they going to say: "I don't care about all that. Fix Fred's leg"? It is a hard case.
The only help they can be given is that if they jump to section 28, if they cannot understand what to do or how to make this out, they can go to the board and ask for some direction themselves. As you know, the board has to convene within seven days to give them advice. This trip through the act reminded me of a trip I made this morning. I came up here on the subway. I got off at Queen's Park and I came through the tunnel, and I got lost. I ended up in the wrong building on the wrong floor. I had to get directions. Somebody very helpfully sent me over here. There are a couple of parallels. First, like this bill, the tunnel is too long. Second, the signs are not good enough. People are going to get lost in this.
Probably equally instructive in terms of what you are doing is what I noticed as I walked down that tunnel. As you know, on not one side but both sides, every 12 inches, there is a light fixture from end to end of these tunnels. Every other light on each side is turned off. As I walked along, I had lots of time to think about it. What I thought about was this, which I think is apt. I have no doubt that the design of that tunnel and those lights and their placement and numbers were specified by an expert. I have no doubt that there was a committee of at least one ministry that studied these plans and this lighting need. I have no doubt that it went through a number of channels of approval, including the Management Board, to justify the cost of it. Somebody in retrospect has walked down the tunnel and said: "What the hell have you got all these lights here for? Let's turn half of them off." It is a very apt example, I think, of what can happen when you get skewed off by a bunch of experts saying: "Here are a whole bunch of rules. If you put them all together, this is a perfect system." The layman walks through this tunnel and says: "This doesn't work. Can't we do this better, more simply, with the same result?"
Let me ask you a couple of more questions.
The Chair: Would it be possible for you to forgo that and allow us to ask some questions, or would you like to use the full half-hour?
Mr Ferguson: I would rather use it because I think that would be less instructive than what I can suggest to you, but I am in your hands.
The Chair: Is it at your discretion.
Mr Chiarelli: On a point of order, Mr Chairman: Given the fact that this is the last submission before the lunch hour, we might want to extend it for 10 or 15 minutes in order that we can ask some questions.
The Chair: Do we have unanimous consent for that?
Mr Fletcher: No, I cannot stay.
The Chair: No, we do not have unanimous consent. Please proceed.
Mr Ferguson: Let me ask you some quick questions without elaborating. Do all patients and all situations require this much bureaucracy? Does this patient require this much protection? Who will tell the doctor what the rules are? Who will tell the patient? This is a provider-driven system. What I mean by that is that the only way the system is going to be triggered is if the health care provider triggers it. No patients are going to arrive at the hospital with the bill. Some physician or care giver is going to have to explain the system and their rights.
What will this cost? I am concerned. I do not have time, but I will leave these with you. I made a number of inquiries to try to determine what this would cost. I filed some of these wonderful freedom of information requests with various ministries. From the Ministry of Health I got a number of pages that were blanked out for the various reasons that they provide in the act. But from another ministry, that of the Attorney General, I got some answers, and what I have given you are some excerpts from those.
What they frankly show -- I will leave them with you -- is that the public trustee is very concerned about this, judging from his memos. He is being given erroneous or at least unsubstantiated estimates which he says may result in adjustments of his budget from $6 million to $48 million, depending on which figures are right. He tells you that he is presently working out of a broom closet -- I am sorry; it is a library with one desk and one person -- and he queries how he is going to cope with all this if he is given these added responsibilities.
What I also know, since I have asked for and not been given it, is that there seems to be no public information as to how often this system would be triggered or what it would cost, and I frankly do not know if anybody has made the inquiry. Certainly none of my clients has ever been asked, "How often do you have incapable people in these various scenarios which would require this?"
What do we need to do? I suggest we need to simplify the system and boil it down to its essentials. I will not repeat what they are, but at the back of the pile I have given you an instructive letter. It is from a lawyer named Ken Howie. In terms of bias, Ken Howie has the opposite of my bias. He acts only for patients. He sues my clients. Ken Howie and I were both on the consulting committee. He and I agree on the remedy, and in about two pages he has listed what he thinks is required and what I agree with.
If I could say one last thing about the process, there is a widely spread rumour that there are already amendments drafted and awaiting implementation once your hearings are completed. I am concerned about that because I fully expect, from the reaction I have heard, that there will be amendments and I am concerned they may already have been drafted. I am more concerned that the juggernaut of the process I referred to earlier will take effect, and what will happen is that after all these hearings there will be a raft of amendments. The thing will substantially change complexion and shape and length and light, but there will be no more input. You will never know whether the patients, the care givers, the family members, their lawyers, all the hangers-on, think the new car will work.
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I would urge you at the end of this process -- and the reason I am avoiding the specific amendments -- to recognize that this will not work, or at the very least may not work, that we do not know what it is going to cost, and that you suggest they consider substantial changes to it and then let it go out for distribution and allow people to form representative committees to decide if it will work, and come back to you a second time. I think it is only if you go through that process that you can have any assurance this will work at a reasonable cost and in a reasonable fashion.
The Chair: Thank you, Mr Ferguson.
Mr Chiarelli: On a point of order, Mr Chairman: I just want to say that we have fixed time frames etc., and I personally find it very offensive that we are not given an extra 10 or 15 minutes to ask this witness questions.
The Chair: You are not on a point of order, Mr Chiarelli.
Mr Chiarelli: It is a point of order. I am addressing the agenda that you have established, the time frame, and the fact that we are proceeding on a basis with this legislation that is very non-partisan. I am saying that you are testing that by simply refusing 10 or 15 minutes to ask a very good witness some questions.
The Chair: The Chair has not refused. We did not have unanimous consent from the committee.
Mr Chiarelli: You are also inviting a filibuster on this legislation if we are not able to question witnesses. We want to be non-partisan --
The Chair: Excuse me, Mr Chiarelli. Before the witnesses came, they were instructed by the clerk that they had 15 minutes for a presentation and it was suggested it would be appropriate if they allowed some time for questioning from the committee. If they choose to use the full half-hour for their presentation --
Mr Chiarelli: If you want to set the rules, you will have to play by the rules.
The Chair: Thank you, Mr Chiarelli.
Mr Ferguson, on behalf of the committee I would like to thank you for taking the time out of your busy schedule to be here this morning.
Mr Ferguson: I shall not run away if Mr Chiarelli wants to ask me a question in the hall.
The Chair: This committee stands recessed until 1:30 this afternoon.
The committee recessed at 1202.
AFTERNOON SITTING
The committee resumed at 1338.
The Chair: I call this meeting back to order.
Mr Chiarelli: I am at the present time moving a motion, which I will ask my colleague Mr Poirier to bring up. There are several copies.
The Chair: Mr Chiarelli moves that public hearings on Bills 74, 108, 109 and 110 be suspended to permit the government to withdraw the legislation, following which public hearings would continue before the standing committee on administration of justice as "proposed" legislation.
Mr Chiarelli: I have some comments to make on that motion. Before these hearings commenced and since they have commenced, there have been very significant representations received, most of which have indicated that it is timely to consider legislation of this type but that in point of fact the legislation itself is very complicated, has very major gaps in it and should be reviewed under circumstances outside the legislative framework, because, as we know, the general legislative process involves the introduction of a bill for first reading, second reading, and at second reading stage there is a vote taken accepting the legislation in principle. It then goes to committee and committees can do various things with the legislation, including having public hearings.
This legislation probably affects more people in a more personal and emotional way than any other legislation I know of in recent history, including the health professionals legislation, which I want to refer to. In the health professionals legislation, Ms Caplan prepared legislation and then went out on a very broad consultation process with draft legislation, rather than having live legislation in the consultation process.
I believe the consultation process is absolutely essential for this type of legislation. As I mentioned, it is very personal in nature. In addition, it is very technical in nature, and I guess the legal implications have a lot of permutations and combinations in terms of interpretation.
I want to point out that in the opening remarks of various ministers, for example, the Minister of Health, Ms Lankin, I pointed out at that time that her printed remarks were replete with, "Maybe this, maybe that," and "We'll have to look at that and we'll have to look at that." I agree with the substance of what she was saying, but I disagree that we should be looking at a live piece of legislation in contemplating those variables to the legislation.
I had no preconceived notion that I would be moving this motion and I am doing it on an impromptu basis with that background, and I am doing it particularly based on some of the submissions we heard this morning, which I want to refer to very briefly.
I think we all know who Dr Lowy is and his background and that he has been, in a very non-partisan way, counsel to various governments, task forces and commissions. I also want to say, in a very non-partisan way, the health professionals legislation, which was dealt with in draft form, was also started with the Conservative government. The Liberal government moved it along and the NDP government took it to its conclusion. I understand this particular legislation started consideration under the Conservatives, the Liberals moved it along and now the NDP has it.
There is a general consensus that this type of legislation, this subject matter on this matter --
Mr Wessenger: On a point of order, Mr Chairman: I wonder if we could have a ruling about whether this motion is in order. I am just uncertain whether it is a motion that is in order or not and I wonder if the Chair could give consideration to that.
The Chair: The motion is in order because the committee is allowed to set its own schedule and what he is asking is for the committee to suspend hearings. He is not asking for the committee to withdraw the legislation; he is asking to suspend hearings so the government can withdraw it and it is in order.
Mr Chiarelli: Thank you, Mr Chairman. I do apologize. I know there are people waiting to make submissions. Perhaps we can continue this debate later on, after I make my preliminary remarks, when we are not holding up presenters, but I did want to point out the significance and the source of some of the concerns about the specifics of the legislation. I was commenting on Dr Lowy who indicated in his brief this morning:
"We have serious concern regarding some assumptions that seem to underlie the proposed legislation. Whether intended or not, there would appear to be an underlying assumption that as a rule the rights of vulnerable incapable persons are best protected not by their families or health professionals, but by special advocacy services provided by strangers. The untested implication of the mandatory advocacy requirement is that the majority of family members, nurses and physicians are not to be trusted to advocate patients' best interests."
He goes on to say:
"It is our strong recommendation that the advocacy services bill, Bill 74, and section 10 of Bill 109 be reconsidered.... As well, a carefully controlled and evaluated trial of mandatory advocacy for persons incapable of refusing or consenting to treatment might well be justified in a small designated area. However, expansion of such services to all such patients in Ontario can only be justified if such a trial confirms the need for these services and demonstrates that they advance rather than retard the welfare of the persons concerned."
Mr Winninger: On a point of order, Mr Chair: I would just like to know where Mr Chiarelli is going here. I heard him say that rather than keep all the delegations waiting, he would like to continue the debate later. How much of this debate are we going to engage in now while these people are waiting?
The Chair: You do not have a point of order, Mr Winninger.
Mr Winninger: And how much are we going to engage in later?
Mr Chiarelli: A few more minutes, if I can continue. Is there any legal, technical time limit on my remarks, Mr Chairman? I do not believe there is.
The Chair: No, there is not.
Mr Chiarelli: Thank you. We have Dr Lowy from the University of Toronto coming in, and he did spend considerable time talking about research and treatment and various issues of that type. Keeping in mind that he is from a research, academic background, he is saying here that we are talking about treatment of individuals and persons, and when you talk about treatment of individuals and persons, you study and you experiment and you do some lab tests before you go out holus-bolus and do that. He is suggesting here basically a pilot project to implement the principles of this legislation.
I am really saying that we are looking at breaking new ground. It was admitted that this is a new model for legislation, and it is appropriate that people be able to come in, individuals and groups, and talk under circumstances where there is not the time pressure of realizing that in two weeks or three weeks or four weeks, this matter is going to be coming forward for third reading in the Legislature. I do not think the various issues encompassed by this legislation require that sort of a shotgun at the heads of people when they are dealing with this type of emotional issue. So I am making my suggestion and I am making it in a non-partisan way so these issues, this model of legislation, can be dealt with over time without pressure.
Again, I mentioned several submissions this morning. We had another submission from a very reliable group, the Ontario Association for Community Living, Audrey Cole, and again, if you look at Dr Lowy said, in many ways it is identical to what Mrs Cole is saying. "We must design" -- in other words, she is talking about going back to the drawing board -- "enabling legislation that validates the decision-making process of people whose decision-making is discredited, without diminishing either their personal rights or human identities."
The competence and the experience and the background of all those briefs I have read from people and the ones who have come forward so far are so persuasive that this policy area and all its implications needs legislation, but in fact they are saying that it needs review, redrafting, and reconsideration over time. I want to get that on record. I will predict absolutely that the government members will vote it down and against it, but I am hoping that they will consider them as substantive, reasonable and non-partisan recommendations.
I want to see this stuff discussed and I want to see it legislated in due course, but I think the present format is not conducive to a collective decision-making on this legislation, which is necessary. There needs to be a consensus by all the major groups, including the College of Physicians and Surgeons, the health disciplines, the people who are in the field, and I really believe that we collectively at Queen's Park from all parties are making a serious mistake and we are going against the current trend of trying to make collective decisions on matters of serious concern to the public.
I just feel that a lot of people are uncomfortable dealing with this at second reading stage. We have heard people say that there are amendments around, which may or may not be the case. We have nobody on the government side saying they do exist or they do not exist, and there is tremendous apprehension being created, given the current process.
Mr Chairman, I am concluding my remarks. I have no idea whether anybody else on this committee is going to comment on the substance of my motion, but I do want to put it forward. I hope I can encourage some other people to make some remarks on it because I really believe we need to look at these very serious, emotional, technical, legal issues a bit of a distance from a third reading, and particularly because we are looking at a group of bills, each one of which is very technical and in the normal course would be dealt with separately by a committee such as this. We have dumped them all together and we need time. The circumstances are absolutely terrible for looking at this composite of legislation at second reading stage.
That is why I moved my motion. I hope the government will seriously consider simply standing back. There is no imperative that this be done next week or next month or six months from now. If this legislation gets through in July 1993, we will probably all be further ahead that we have taken that cold, sober look at it from a distance. But to say that we are going through clause-by-clause in a couple of weeks, amendments are going to come forward, it is going to be introduced for third reading, my guess is that you are going to create a terrible commotion. You are going to create a lot of emotional hardship under circumstances which are not necessary, so I am saying let's stand back and do it right.
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Mr J. Wilson: I would just comment that I agree with a number of the concerns brought forward by Mr Chiarelli, although I would also agree with his first comment that perhaps this is better dealt with after the witnesses have made their presentations today because they have been good enough to show up and they are waiting. But I would not want to see the government dismiss the concerns that have been raised. I think they are very serious.
The Chair: With the indulgence of the committee and in fairness to our presenters, is it all right if we deal with this after our last presenter today? Agreed.
Just a reminder, we are dealing with well over 100 presenters and we are on a tight time frame, so some of the things that were raised this morning --
Mr Winninger: Mr Chair, I move you call the question now. The points that the opposition members wish to make are out in the open and we can deal with them now in an informed way.
The Chair: All in favour of putting the question? Opposed?
Mr Chiarelli: I thought maybe they would want to make some comments on it, but I guess they are not interested in a substantive, reasonable motion that was presented in a non-partisan way. That is open NDP government. Thank you very much.
The Chair: There is no debate. All those in favour of Mr Chiarelli's motion? Opposed?
Motion negatived.
The Chair: As I was saying, we are dealing with bills of a fairly technical nature, so you will have to allow the Chair some flexibility in the question-and-answer period, but I must remind you we have well over 100 presenters and we are on a three-week time frame so we have to stick as close to the schedule as possible.
CONCERNED FRIENDS OF ONTARIO CITIZENS IN CARE FACILITIES
The Chair: I call forward the first presenters this afternoon, the Concerned Friends. Good afternoon. Could you please identify yourselves for the record and proceed?
Mr Simmons: Yes, I am Harvey Simmons, president of Concerned Friends, and I am also a professor of political science at York University.
Ms Goldstein: I am Dian Goldstein. I have been with Concerned Friends for six years on the board of directors and I am presently just an independent advocate for seniors.
Mr Simmons: Thank you for the opportunity to appear before the committee. You evidently have copies of the statement I am going to make, so I will not read from it literally. Since we have so little time, I will try to be brief and paraphrase and maybe pick up on some of the important points that I think we have made and perhaps even some observations about the points Mr Chiarelli, who has just left, made.
Concerned Friends is an advocacy organization which is about 10 years old. It has about 600 members. I am not sure if we are the most active advocate for elderly people in the province, but if we are not the most active advocate, we certainly are one of the most active advocacy groups for the elderly. We have vast amounts of experience, particularly in advocating for elderly people in nursing homes in this province in addition to people in municipally run homes for the aged.
As I am sure you all know, there are vast numbers of elderly people in institutions in this province, about 60,000 in all. Approximately 30,000 are in the mainly privately owned nursing homes and another approximately 30,000 in the homes for the aged, not to mention about 12,000 elderly people and others in chronic care hospitals and in the community.
People in these institutions desperately need advocates to help them and they need them now. Just to allude to a remark Mr Chiarelli made about a pilot project, my impression of what I have seen of the Advocacy Act right now is that if it is implemented soon it will be in its entirety a pilot project; that is, the number of people who need services is so vast and the sea of misery is so deep that even the Advocacy Act which is now before you, it seems to me, will merely touch the surface of the problem that is before you.
Let me just allude here to something specific and that is the fact that -- I am not sure whether you are aware of it or not -- there are 30,000 people in private nursing homes in this province. These nursing homes are inspected once a year. The inspection visits are announced in advance. The inspectors may spend two or three days there, four or five days if they find some difficulty, but for most of the year elderly people in nursing homes, unless they have relatives or friends to speak for them, have no one to speak for them at all. Concerned Friends attempts to play that role. We have in fact five or six people who are active advocates. But five or six people for 30,000 people in the private nursing homes, not to mention those in the other institutions, is simply a drop in the bucket.
We get thousands of calls every year from people who need help. Let me, however, quote to you very briefly from a letter that was sent to us last year, November 4, 1991. I note this person had no idea of the existence of the advocacy legislation, but let me just quote to you very briefly from the letter which comes from a woman who gave me permission to quote her name, Jean Trimble from Belleville:
"My mother at 103 years has just passed away in a privately owned nursing home in Belleville. She had been in the nursing home for six years and in extended care in Belleville General Hospital for a year prior to that.
"Believe me, we could write a book about what we saw during those years. Health inspectors and casual visitors do not see the true picture. We were able to keep watch over our mother, but there were many who had no advocate, no caring friend or relative to watch over them."
Those are just a couple of paragraphs from Ms Trimble's letter.
We at Concerned Friends strongly support the Advocacy Act. We have no particular vested interest in the Advocacy Act. We are an entirely voluntary organization. Our funds come purely from donations. None of us is paid. Nobody in Concerned Friends has ever been paid for their participation.
Let me conclude very quickly, because I would like to give Mrs Goldstein a chance to speak as well. There is one point I would like to raise that perhaps is not within the purview of this committee but which I and members of Concerned Friends feel is very important. This committee is concerned with the administration of justice, but I am sure as legislators you are concerned with the larger issue of social justice. You all know that in 1972 this province decided to deinstitutionalize mentally handicapped people, developmentally handicapped people. I think the community care system that was implemented was a positive step forward for them. In the 1970s and 1980s, mentally ill people were deinstitutionalized from the large psychiatric hospitals. Community care for these people has not been quite so successful.
There is an enormous irony in the fact that today if you were to suggest putting a mentally ill or developmentally handicapped person into an institution of 100, 200 or 300 beds, you would be laughed out of court. If you look at the figures for the size of the institutions which warehouse elderly people in this province, they are 100, 200 or 300 beds in size.
The point I am making here is that the Advocacy Act is a defensive measure. It is a measure designed to protect vulnerable adults and to enhance their independence. But why not strike at the very institutions and structures which give rise to the need for advocacy in the first place? What I am saying is it is about time, if we are concerned with larger issues of social justice, that the elderly were deinstitutionalized and that a proper system of community care was put in place for them, as has been done for other vulnerable groups. In the meantime, we desperately need the Advocacy Act and, as I said before, it will even in its current form be merely a drop in the bucket. Thank you very much.
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Ms Goldstein: I would like to address three issues: first, my own experience; second, the legislation, including the two specific target populations; and third, an issue about statistics that was mentioned, I believe, by the member here, Mr Poirier, on Monday.
First, as Harvey indicated to you, Concerned Friends of Ontario Citizens in Care Facilities was really born out of the need for advocacy, and that was in 1980. We are now in 1992 and we are still a voluntary group. This group did not form because it wanted to. This group was formed because families and residents asked for help. They got together as a self-help group initially because there was such a big need. That need has multiplied in the last years.
Personally, I became involved with this organization because of my own parents. My father suffered Alzheimer's disease and my mother had a stroke. I called agencies. I called the government. I called everyone. There was no such thing as a rights adviser, an advocate, or there was not anybody who knew all parts of this puzzle. Boy, was I at sea. I found myself for eight and a half years being their advocate until they passed away. Needless to say, I suffered great desperation and great emotional vulnerability. I wanted an advocate for my parents to advise them of the services that are available.
I must go one step further. We all go through periods in our lives when we each are emotionally vulnerable. I can tell you that I was very emotionally vulnerable and I would have preferred to have had an advocate for me and my parents.
I would like to confirm what Trudy Spinks said on Monday here at this chair, that in fact families would rely on advocates. I can tell you that from the Concerned Friends' experience; families call us and they rely on us, not just as a rights adviser, which to me gives a legalistic feeling to this legislation, but really to help them see through the system, tell them what the options are, help them to get some answers from government, help them to proceed through the system. Needless to say, I support this Advocacy Act and this legislation very strongly and I believe the time is overdue.
Regarding the two target groups under this legislation, it includes adults who are disabled and it includes seniors. I am very impressed with the disability community. Those people who are functionally competent have had the ability to lobby, be self-advocates, show strength and show a great sense of self-determination. I admire them and I am proud of them. I think seniors should take a letter from their page.
But I would like to talk about seniors too. Seniors, on the other hand, represent a group of new pioneers. As we know, never in our history have we had a population, a generation, that has lived this long. You know, we all think it will not happen to us. We all hope that one day we will be lying in our bed at 92 and we just will not wake up, or we will be sitting playing cards at 87 and we will roll over on the floor. Seniors have not had the ability yet to look forward to see what kind of morbidity or mortality faces them in the future.
I mention this issue because I believe in the advocacy system so strongly. But I would like to see some kind of emergency system set in place or some kind of mechanism so that we could concern ourselves with the numbers of people and the vulnerability so the services of advocacy for the disability community and seniors are equitable and balanced.
As Harvey indicated, there are 72,000 seniors presently needing advocacy, who are living in long-term care institutions which include nursing homes, homes for the aged and chronic care. This does not include all the seniors who are vulnerable, because once you become institutionalized, institutionalization breeds dependency, and we all read the literature and we know that dependency breeds vulnerability. Aside from those 72,000, we have people living in retirement homes and rest homes, boarding homes, and the rest of the seniors who might have some level of dependency live in the community.
Third, Mr Poirier, when Steve Fram mentioned on Monday that we do need this advocacy to avoid exploitation, abuse and neglect, I believe you questioned him, "Do you have any statistics?" I would like to address that point.
For all of these years since the Nursing Homes Act has been in existence, they have been doing monitoring to see if in fact nursing homes have been in compliance with the nursing home regulation and the Nursing Homes Act. This has been going on since 1972, and of course that is why Concerned Friends was born in 1980.
Because we always come to government and we always write letters on the experiences only that Concerned Friends has from family and residents calling us, we decided to write a report about the compliance review reports. As Harvey mentioned, the inspectors or, as they are now called, compliance advisers go in once a year to look at nursing homes, so we looked at their compliance review reports. There were 263 chosen randomly, and 146 homes had serious violations. One of the violations that I will address is under nursing services. The nursing services include general nursing services and safety nursing services.
Of these 146 homes, 33% of them had serious nursing violations, and may I read just a few of these? "Residents in geriatric chairs are not repositioned hourly, and therefore they have skin breakdown and bed sores." Just another one: Do you not like your shower every morning? The basic regulation indicates one bath a week, and in fact this was found to be not always in compliance either, and residents were not even receiving one bath a week.
Residents were having restraints applied to them without a physician's written order and without supporting documentation and assessment, and in some cases, it indicates, they were not even aware of these appropriate restraints. Also, not all incidents have been documented. There have not been incident reports written.
I have a whole book of this neglect. The neglect has been documented; we need no further documentation. May I indicate to you it is not just since January 1990 to March 1991 that we have written this report, but this has been happening all along. With the time, I think I will just conclude my report.
The Chair: Thank you. Each caucus will have about five minutes. Mr Poirier.
Mr Poirier: I want to reassure you that I was not questioning the validity or if there was any evidence whatsoever. At least I personally, and I am sure my colleagues also, strongly support the basic principle of advocacy. I know there is a great need for it out there.
The question is why, and what I have explained to advocacy groups that have come to see me is we want to make sure that, along with the principle that we strongly support, we want to see something that is practically applicable, that is useful, that will not cause, in some particular cases, more problems than it is supposed to resolve. That is the only reason that we are raising questions.
I do not question whatsoever what you are seeing and what you are bringing up; I know it does exist. I have been extremely fortunate in my riding. I do not think you will find too much from my riding. At least in my seven years, if you go by the number of complaints, it has been very good. Thank goodness, and I wish other ridings could benefit from that. But obviously there is quite a case load. We strongly support that, but what we are seeing is what we perceive and a lot of other people perceive to be serious problems in applying the theory of the good principles of advocacy and what we think may happen to the contrary, with all the good intentions and the goodwill of everybody, and we are worried about that.
These are the particular points that we have seen addressed, that we want addressed, and we want to impress upon the government, with very good will, to make sure that, as the parliamentary assistant has mentioned, the minister is listening. From what you have heard, I am positive that you will come forward with some amendments to make it even better. I want to tell you and the government members that at least I am strongly supportive of the principle.
I think my friends on the government side know me well enough to know that if we make a criticism, it is a constructive one. I want to reiterate that to you, just in case you thought we were coming from a different angle.
Ms Goldstein: Thank you.
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Mr J. Wilson: Like Mr Poirier, I think we, in our heart of hearts, know of the problems you bring to us, particularly as representatives of our ridings. I am not sure my riding is as perfect as Mr Poirier's, because we have had problems in nursing homes. I was an assistant for some seven years and I have personally had to spend a great deal of time intervening in cases where we had problems.
One of the major concerns, though, to be frank about it, is the cost of this. We had Dan Ferguson in here this morning, a lawyer who had done some research through access-to-information requests, and he brought forward a letter from the public trustee stating that his budget will have to go up some $42 million to accommodate what the government is expecting of his office under this legislation. That is from a reputable person who is the public trustee of the province.
I guess you agree, so it is a rhetorical question, that we should be setting up a very large system of advocacy. I was wondering, though, how much the government has looked at improving our inspection system and providing better training and putting resources into what we have. I am the Health critic, and it is a pipe dream. If we are going to spend this type of dollars on advocacy, we are not going to be able to move in the near future -- and maybe in my lifetime -- to the proper community-based care that we require, because there just is not the money to be doing everything and it does boil down to a question of priorities. Maybe I could just hear your comments from the other side of the coin, for those of us who are very much worried that we cannot have everything and we have very limited resources.
Ms Goldstein: One comment: Mr Chiarelli mentioned how important this is for human value and humankind, and I think that any --
Mr J. Wilson: But social justice has a price.
Ms Goldstein: That is right.
Mr J. Wilson: Bob Rae can go around and put it in our charter, but there is a price attached to it, and that is the reality we have to face. I have met with groups that have said, "Well, the price does not matter." We have also had many groups in here saying: "Well, we cannot do a half-assed job of this. We have to do it right or do not do it at all. It may inflict more harm than good." So that is where I am coming from.
Ms Goldstein: I am just going to mention one other comment that you talked about, the present, existing people who could be inspectors or compliance advisers. The unfortunate thing is that we have a government and civil servants who have been acting in that role now since 1972. They give licences, they monitor care and they attempt to enforce it.
Unfortunately, the compliance advisers and the inspectors -- now I am not saying this for all of them, but there is a tendency, because they are all part of the same system, to cosy up to the administrators. I am just talking generically, not specifically, that this does occur, and as a result, appropriate enforcement cannot be part of this. That is why we have always recommended that if we give licences, an independent body should be there to do the enforcement, to check for monitoring and compliance, so that an appropriate event can take place when people go and look at whether they are in non-compliance with the act.
We feel there is a bit of conflict of interest with one branch of the government doing all things. I agree that there has to be priority, but this issue of advocacy has been around for a very long time. I recognize that they have to be balanced, but in view of this balance, I really have felt that advocacy should be at the top of the priority list. I can honestly say I do not know about funds, I do not know about trillions of dollars and how you divide it up, but I do think if you put the nays and the ayes on the other side of each line, the Advocacy Act should be at the top of the list.
Mr Simmons: Can I just briefly respond to that question? You are right that there are scarce resources and one has to make decisions about where they go. You mentioned putting more money into health inspection. Health inspection, from my knowledge of the literature, never works anywhere. It simply does not work. This province has fiddled around with it for the last two decades; it has never got it right and it never will. The reason is you cannot inspect properly homes of 100, 200 or 300 beds unless you have someone in there every single day of the year. That, I think, is not an option.
Exactly where money should be put is up to the government in the end. As far as the current system goes, it seems to me no government has really looked into the question in depth to decide, for example, whether it might be as cheap or even cheaper to start moving people into community residences, scaling down the large nursing homes which now take hundreds of millions of dollars out of the province, to see whether in fact you can have a one-to-one swap; one dollar for the community, taking away a dollar from the nursing homes, that is, using dollars that go to the nursing homes and the homes for the aged for smaller community residences. If it is small, it is easier to maintain quality and you automatically, therefore, take care of the quality problem. But I agree with you, there is a question here of priorities, and we are well aware of that.
Ms Carter: I would like to congratulate the presenters on their active concern for vulnerable people. I think that is wonderful to hear about. I would like some clarification. You have said that your organization does not receive any government funding for advocacy services, so I take it that is absolute; you are not getting any money at all. Do you know of any organizations like yours that do receive government funding for advocacy services?
Ms Goldstein: The only organization we are aware of is the psychiatric patient advocate office which, from speaking to the advocates in that office, does a terrific job. We just wish there were more of them and more advocates for people who are in institutions for seniors.
Ms Carter: It has been suggested in this committee that the profession of advocacy under Bill 74 might be a duplication of services already provided in the community. Do you agree with that?
Ms Goldstein: No. There are no such services, there is no duplication of service. We are a totally volunteer organization and we are the only one in this province that voluntarily helps seniors as advocates. We are not aware of any organization that is paid. Are you?
Mr Simmons: No. As far as providing the service goes, if you call perhaps 10 advocates, six from Concerned Friends and four others who are volunteers from across the province providing the service, then okay, but as I said before, we are just touching the tip of an iceberg. This is a service that has yet to be provided and really is not being provided, by us or anybody else, as far as I know.
Ms Goldstein: Just to add to that, some people might suggest that service providers in fact can provide advocacy. We totally feel that they cannot, because when a service provider works for an agency, he has that organization first at heart. He cannot have the resident or the senior first in his mind in order to protect him and provide advocacy.
Ms Carter: In a sense, there is a conflict of interest.
Ms Goldstein: Definitely a conflict of interest. We just do not feel service providers can be effective advocates.
Mr Curling: Just a point of clarification for Miss Carter about duplication. They talk about advocacy, the Ombudsman, human rights and race relations. All those organizations are advocate groups. As a matter of fact, there are groups being funded by government to advocate for the rights of people in some respects. So when we talk about there being no groups that get government funding --
Ms Carter: But if you are looking at racial groups, for example, those people are not vulnerable in the sense that we are talking about under this act.
Mr Curling: No, they are not vulnerable.
Ms Carter: They may be discriminated against, but they can speak for themselves.
Mr Curling: Yes, not getting any jobs and things like that, but not vulnerable.
Mr Fletcher: Thank you for your presentation. You have been around since 1980 working with your group. Is the Advocacy Act going to benefit the people you see every day and also your organization?
Mr Simmons: I certainly hope so, yes. I assume that was one of the intentions of the act at the beginning.
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Mr Fletcher: I want to get to the last part of your presentation. Let me just read it: "This act should be seen as merely the first step on a long road." What do you see the act progressing to as it goes along? What would you build in so it can evolve into what you would like to see?
Mr Simmons: I am not sure if I can speak for the organization, but I would personally like to see a two-track approach. First would be the implementation of a comprehensive Advocacy Act that would cover vulnerable adults, including particularly seniors. The second track would be deinstitutionalization of the elderly. Those two things should move in sequence and together. I do not think one necessarily replaces the other.
Mr Fletcher: Just one quick point. Do you think we should scrap these hearings and send everyone home?
Mr Simmons: Absolutely not. I think the hearings should conclude as quickly as possible and the act should be implemented as soon as possible. As I said before, the act as it stands is a pilot project. I assume, given monetary constraints, that the number of advocates you are going to appoint will be few in number.
Mr Fletcher: I thought that was folly myself. Thank you.
The Chair: You have a quick response?
Ms Goldstein: I was just going to make a comment on Mr Curling's comment. I do not have any statistics, but we know people who have in fact attempted to approach the offices you have suggested and they have found they have been bottlenecked with waiting lists and they have not had an opportunity to get their needs served. So although you might have mentioned these other organizations, they have been ineffective for seniors' case advocacy, and that is what we are looking at right now.
Mr Curling: True. That is right.
The Chair: Mr Simmons and Ms Goldstein, on behalf of the committee I would like to thank you for taking the time out to give your presentation.
Mr Sterling: Mr Chairman, while we are having the next group come forward, I would like to ask the parliamentary assistant for the Ministry of Health a question. I understand that it is contemplated that there are going to be 150 advocates under the Advocacy Commission. Is that correct?
Mr Wessenger: You would have to direct that question to the parliamentary assistant for the Ministry of Citizenship, because I am not aware of the details of the advocacy program.
Mr Sterling: I would like to know how many advocates we are contemplating having.
Mr Malkowski: In response to your question we are looking at 150 or over, plus volunteers.
Mr Sterling: There are 284 hospitals or something of that nature. How many nursing homes and homes for the aged are there in the province, Mr Wessenger? How many nursing homes are there in the province?
Mr Wessenger: I would have to refer that to staff to see if they can answer that at all.
Ms Auksi: I think we would have to bring you the figures. I do not have them off the top of my head.
Mr Sterling: It would be hundreds.
Mr Wessenger: I think it is fair to say that it would be in the hundreds.
Mr Sterling: My concern is the advocacy model, which we have just heard about. Is it really going to be able to be utilized in nursing homes, or are we really laying false hope for people who are putting forward this? I would like to know whether they are coming here with a false impression that the advocates are not going to be able to help out the elderly in nursing homes.
Mr Wessenger: I will answer this only from a Consent to Treatment Act perspective. We anticipate that the only role the advocate is going to play in the Consent to Treatment Act is as a rights adviser and nothing else, no other role, and I understand that would be a minor role with respect to the activities of the advocates. I think we could again probably ask the parliamentary assistant what he perceives to be the general overall majority role the advocates would play. I understand the area in the health field is going to be very minor with respect to the role of the advocate and with respect to the Consent to Treatment Act in any event. Perhaps we could have Mr Malkowski indicate.
Mr Malkowski: The Advocacy Commission will have flexibility in deciding things such as fee for service, also using volunteers. Their function will be limited to rights advice and advocacy only.
Mr Sterling: I do not want to draw conclusions, but the group that was just here had the impression, in my view, that the Advocacy Act was going to greatly enhance the lives of people who are not represented in nursing homes. I guess what you are telling me is that they have drawn the wrong conclusion. I mean, if they are not going into nursing homes, then --
Ms Akande: If I may interject, Mr Sterling, I had the impression, and I may be wrong, that the reference to advocates that was made by the last group was really looking at extending their use and making them available to all people. I think the way this is written, it is written as though only those people who find themselves in extreme need or who are without the kinds of resources and the kinds of answers to questions that they need, will actually refer to advocates. What you are referring to is, there seems to be a difference in the kind of need that is out there and the numbers that have been put in place in order to respond to that. Am I clear about that?
Mr Sterling: I am concerned about two things. Number one is the numbers that we are talking about. Not one of these advocates is going to walk into a nursing home, as I can understand, because they are going to be so busy in other parts of the system that no one within a nursing home is going to get an advocate unless they pick up the phone, or a health care provider picks up the phone, and calls them. I do not think that is going to happen very often.
My concern is that when you bring in an advocacy system like this, then you give all kinds of impetus to the system to say we do not need to enlarge our inspection branch in terms of dealing with nursing homes, or we do not need to be as concerned about that because we have these advocates out here who are going to answer for these vulnerable people. I think the wrong message is going out as to what these advocates are going to be able to do in society.
The Chair: A quick response, Ms Akande.
Ms Akande: It would be my feeling that certainly the inspection system has not worked on its own. It has not worked in a way that makes advocates unnecessary. I think most of us would agree with that, and that there are still large gaping holes. One of the presenters made the point that if you are going to rely on an inspection service, you would have to have inspectors there all the time in order to understand exactly what was going on all the time. What we are doing here is marrying two systems. We are trying not to remove the inspection system, which is necessary, and supplementing it with another need that is there, and providing services to people who need some support in terms of where to turn and how to access information, how to get the very best support, and also serving those people who have no one to speak for them as well.
ELVIN MCNALLY
The Chair: I would like to call forward now Mr Elvin McNally. Good afternoon. Could you please identify yourself for the record and then proceed.
Mr McNally: I am Elvin McNally, from Guelph, Ontario. I am speaking on behalf of family members this afternoon and on behalf of those who are related to people ill with schizophrenia. Each one of you will have a copy of my short speech by now, I am sure. In the interest of time I will stick to my little prepared speech.
Of the six bills that are being presented, some with more serious implications than others, I will concentrate my remarks today towards Bill 74, the Advocacy Act, 1991, and what we perceive to be even more barriers to obtaining treatment.
Our family has been affected by the illness called schizophrenia for the past 17 years. We have been members of the Guelph chapter of the Ontario Friends of Schizophrenics since it started 10 years ago. I was president for eight of those years, and I am also a member of the Ontario board of OFOS, but I will be speaking primarily of our own family's story, although many of our chapter's members' stories are quite similar. It is a story of sadness, heartbreak, frustration and anger over unsuccessful attempts to get help for a relative within a system that has not worked.
Our problems started in 1975 with our daughter Carolyn, age 19, who had been a first-class student, a first-class daughter, and even an exchange student in Mexico for the Rotary Club. She seemed to have a great future ahead of her but she started to show signs of inappropriate behaviour, including hostility towards her family, demands to be driven to the airport in the middle of the night for destinations unknown, appearing at a church every Saturday at 5 pm, wandering the streets and eventually disappearing through our basement window on the coldest night of the winter. The police found her three days later with badly frozen feet. That happened to be Christmas Day, so it was quite a day in our house. She was hospitalized for medical treatment.
After several more attempts to disappear, since she was in an extreme psychotic state, we were able to get her admitted under police escort into the Homewood Sanitarium in Guelph. Thanks to the mental health laws before they were revised, she was committed long enough for the psychiatrist to diagnose her as a paranoid schizophrenic and provide treatment for both her psychotic state and severe depression. With properly regulated medication, a few shock treatments to lift her depression and ample follow-up with her doctors, she was able to enter the University of Guelph and attain 16 credits towards her BA degree. Eventually, she started to deteriorate, because she had for various reasons discontinued her medication.
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By that time also, which was now in late 1977, the rules had changed dramatically, due to excessive input from people called advocates, who had placed great emphasis on people's rights. Even though her illness was well known, we were unable to get her help, since she continually signed herself out of the hospitals.
Time is too short for too many details, and I will skip through, although during the years from 1977, we certainly had our share of activities with our daughter. We spent many nights at the Guelph General Hospital emergency room sitting with other people who had cuts and bruises and the flu. In our case, our daughter was there because she had attempted suicide, and she had other serious problems. We walked with her through a pregnancy which resulted in a son who was given up for adoption at birth.
Two specific years come to mind that I will mention. In 1987, in an extreme psychotic state, she jumped from a friend's car on Highway 7. She was taken by ambulance under police escort to the Homewood Sanitarium where she was committed. Several days later, having been informed of her rights, she insisted on appearing before a review board consisting of her doctor who had known her for five years, a lawyer who had never seen her before, and a staff member from the Homewood. She was soon discharged, having made numerous promises that she could never keep.
Three times in 1987 she was on the police missing persons file and turned up in such places as Vancouver as well as Niagara Falls, New York, in her bare feet. She was placed in a temporary holding cell in the state hospital. We asked a Guelph psychiatrist who had also known her from previous visits if he would sign the necessary forms, so she could be moved to Guelph, and he said: "Because of the change in laws, if I signed the form, she would sue me and I would lose." We drove to Niagara Falls, New York, at 2 am, because they were putting her out on the street. If you have ever driven in Niagara Falls, New York, at 2 am when the bars are being unloaded with their customers, it is not a very good place to be and even the police would not go. The most they would do was to give us directions. But we eventually found her, we found the hospital and we found her in a terrible state, but she never received any treatment and we brought her home.
In 1989, she was evicted under court order or left on her own seven different apartments or rooming houses in Toronto, Hamilton and Guelph. Often, we paid the first and last month's rent to obtain the residence. We do not do that any more. The last time we let her stay at our home, she phoned the fire department who came with all their trucks, telling them that we were trying to poison her with ozone. The police said they would escort here to the hospital, the medical doctor said he would sign the necessary forms, but the Homewood doctor told the medical doctor that "If she doesn't ask to see me, I can't see her."
In the last two years, she has spent a lot of time walking the streets either in Toronto, Niagara Falls or Guelph between midnight and daybreak, stopping at coffee shops. As I prepared this presentation last week, she had been missing for 72 hours. We do not phone the police any more. She will have to keep walking until something terrible happens. She is totally unable to attend to her personal responsibilities, including preparing her meals and paying her bills. No one, including the advocates, would ever attend to her needs. They would be too busy explaining her rights.
Last January an elderly couple -- and this is another example that I have heard from being present at the Guelph chapter -- attended our OFOS monthly meeting, stating that they had just had their daughter placed in the Homewood and pleased that she would get some help for her illness, which was schizophrenia. After several weeks she signed herself out. Her room-mate and her doctor pleaded with her to stay for further treatment. The doctor said that under the existing laws they were unable to keep her. The time it took her to walk from the Homewood to the roof of the downtown Eaton Centre parking garage, which is about one mile, was the length of time she had remaining in her life. She jumped. Her aging parents are now trying to raise her six-year-old daughter.
If we were living in a more perfect world, we would be able to work with the mental health system with input from the families who have had lots of experiences, enforcing where necessary the proper treatment when they needed it and having competent professional backup to keep them as adequately treated as possible.
Thank you for your time.
Mr Chiarelli: Do you have any changes that you would recommend in the existing law to accommodate situations such as those that you have described?
Mr McNally: What we would like, and we would only want to use it when we saw our daughter in extreme need of help, is to be able to phone a doctor and using, say, the Homewood Sanatorium, which is in Guelph and where they have competent psychiatrists, we would like them to feel comfortable with being able to treat our daughter and get her back on her feet. All she needs is a bit of discipline, a bit of regulated medication and probably some good group therapy and I am sure that in no time at all she would be able to function for another period of time.
Mr Chiarelli: I am not asking you to get too technical in terms of drafting legislation and so forth, but Dr Lowy from the University of Toronto was here this morning, and to a specific question as to whether the existing legislation fully protected the interests of schizophrenics he said, "Certainly not in all circumstances." There are some gaps in the legislation from Dr Lowy's perspective.
From your perspective, but without pushing you too much, could you be a little more specific in terms of what rights you as a parent would like to have to properly restrain your daughter and to get her back on her medication where her situation could be regularized?
Mr McNally: I guess I can only hark back to, say, 1975 and earlier, because at that time when we had her in the Homewood -- she was committed -- her doctors told her she was going to stay. Several times she got away from the Homewood and she was brought back, but I think she knew in her mind that she would have to stay there until at least she got better enough that her psychiatrist would release her, which took a bit of time that first time because she was so ill. But I do think that there needs to be discipline involved. We need to have the right, where we see a relative who absolutely requires treatment -- and that is not to abuse it -- to actually force some kind of discipline and stay longer than what maybe is a current 72 hours. Even then they do not have to receive treatment if they do not want it.
Mr Chiarelli: Do you think it might be appropriate to have regulations that maybe are a little specific and which you can shoot with a rifle instead of a shotgun, in the sense that perhaps there could be categories of situations, such as for schizophrenics, where there could be a more automatic treatment and consideration for family members who want to in fact see them restrained in hospitals and put on medication? Do you think there should be regulations that are a little more specific for situations? Situations like yours are not uncommon. The situation with schizophrenics, what you are describing, is very common. The situation of the daughter who left the elderly parents and committed suicide is very common. There is a high rate of suicide. Do you think we should design regulations that are more specific for specific illnesses or circumstances?
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Mr McNally: Yes, I definitely do. I think it would make a tremendous difference for those of us who love our loved ones to be able to get them help.
Mr Chiarelli: Do you have any expectation that this committee or this government will accommodate that need as you see it?
Mr McNally: I think the one thing we have to live for is hope. We have to have some hope or probably a lot of us would pack it in. I am sort of optimistic that this committee, giving everyone a fair hearing, would be able to devise some legislation that would be able to help the people who really need it. It is my hope that I would come down to Toronto today to state our case which is not easy to state and that something good may come out of this.
Mr Sterling: I cannot say much to you other than that I thank you for your courage in coming here, sir. My heart goes out to you in terms of your personal circumstance. I only hope this government will not have so ingrained its ideology, this concept that we cannot ever trust other people to make decisions for other people during any part of their lives, regardless of their handicap or that the problem is not so deeply ingrained that it cannot accommodate your situation.
Ms Carter: I do feel for you. I have heard stories quite similar to yours from parents of schizophrenics who live in my own city of Peterborough, but it seems to me we are treading a very fine line here. There do seem to be some cases where the freedom does turn out to be self-damaging, yet I have also met psychiatric survivors to whom that freedom was vital in finally overcoming their illness. I think we have to look at both sides of that.
The Ontario Friends of Schizophrenics in Peterborough have written to the psychiatric patient advocate office stating very clearly, "Your psychiatric patient advocate office is absolutely necessary." Of course, as you know, there are already advocates in psychiatric hospitals. In some cases I believe they have informed families about situations which affected the patient who is a relative and about whom they would otherwise have been unaware. They have then been able to follow up and they have been very grateful for that, so it is possible to see advocates as being supportive of families. Can you comment on that? Can you see how that could happen?
Mr McNally: I can see there probably are instances where a person who is ill could be or would be severely abused. I do think they need to have someone they can turn to for help. I think it would also be incumbent on the people who are helping the ill persons to not only see that they are not abused, but also to work towards actually getting them help through medicine and other therapy that they need to get back on track.
It should not just stop at protecting them and taking them away from where the abuse is, which would be a very important thing to do, but it should follow through to get them help as well. That is what a lot of them need. They just need to be put back on their feet again and they will be good for another period of time.
Ms Carter: I could point out that the point you make on page 3, that because your daughter would not give consent she could not get treatment, is under the existing legislation; that is not something we are just bringing in that is going to be new. Also, you mention the question of catering to needs. I hope we are doing that, under different headings, not in this specific act, but obviously that is something that has to be addressed. I hope you will find that we are doing that.
Mr McNally: I hope so.
Mr Winninger: Mr McNally, I too found your history quite poignant. Would you agree that your daughter, who walks on the coldest night of the year in her bare feet and jumps from cars and does things like that, is someone who at the present time is unable to care for herself to meet her basic needs?
Mr McNally: Yes. It is quite obvious.
Mr Winninger: I guess you would be aware that Bill 108, the Substitute Decisions Act, provides that there can be court-appointed guardians for the personal care of an individual such as your daughter. Is that something that you would support?
Mr McNally: If they would actually take my daughter to the point where she does get help, I would support it. For the last 15 years our daughter has never really been well enough to say: "Some day I'm going to really be psychotic again. I'd like to appoint a guardian now who will be there when I need him or her."
Mr Winninger: There are some people who have argued that the appointment of a guardian by the court derogates from the dignity and self-worth of the individual. Do you see, in your daughter's situation, the guardianship as perhaps enhancing your daughter's sense of dignity and getting her back on her feet again with the proper personal care decision?
Mr McNally: If our daughter would go along with that and knew and trusted and had confidence in the individual, that would be great. But I think the problem would be to find the right mix of her and whoever would be appointed to be her guardian. We have had a number of people over the years try to help her, even the psychiatrist who went to sign the forms. He actually had her as a patient for three years and they got along well but he started to get scared, I guess, because of the change in the rules.
Mr Curling: Would you say that you are a good guardian to your daughter?
Mr McNally: We try to be. We are not the best, mainly because when she gets ill with schizophrenia and the hostilities develop we are there and we are really the ones who are involved with her 24 hours a day, seven days a week even when she is missing. Someone more competent than we, where there was not the conflict of being a father or mother, probably would get better mileage than we can.
Mr Curling: In appointing advocates or a guardian or whatever, it would be good that they check first with the parents, who understand.
Mr McNally: It would be very important that they work together and it would be very important that the advocate be very clued in on schizophrenia, because people who are ill with schizophrenia are much different from people with AIDS or Alzheimer's.
The Chair: Mr McNally, on behalf of the committee I would like to thank you for taking the time to give your presentation this afternoon.
AIDS COMMITTEE OF TORONTO
The Chair: I now call forward the AIDS Committee of Toronto. Good afternoon. Could you please identify yourselves for the record and then proceed.
Mr Flanagan: My name is William Flanagan. I am a member of the board of directors of the AIDS Committee of Toronto and I teach law at Queen's University law school.
Mr Fitton: My name is Wayne Fitton. I am an AIDS support counsellor for the AIDS Committee of Toronto.
Mr Lyttelton: My name is Ned Lyttelton. I am also an AIDS support counsellor for the AIDS Committee of Toronto.
Mr Martel: And I am Bob Martel, executive director of the AIDS Committee of Toronto.
Mr Flanagan: We at the AIDS Committee of Toronto strongly believe that all persons should be able to live and die with dignity. This includes an individual's right to control his or her body, determine the nature of his or her health care, consent to or refuse treatment and decide who will have the ability to make treatment decisions in the event he or she becomes incapable. We also believe that non-traditional family members, in particular lesbian and gay partners, should have a prominent and recognized role to play in making health care decisions for persons who have become incapable.
For these reasons we are here today to endorse the government's proposed legislative provisions governing consent to treatment, substitute decision-making and advocacy services for vulnerable persons.
I would like to highlight some matters of particular interest and concern to ACT. I would like to make five brief points, then I will turn to Ned and Wayne, who are on the staff of the AIDS Committee of Toronto and who will be able to provide you with some of the insight they have gained working with people living with HIV and AIDS.
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The first point I would like to make is with respect to the Consent to Treatment Act, which will codify the current common-law requirements for consent to treatment. We believe this is important. We are particularly concerned about treatment that is for diagnostic purposes which we believe would include HIV antibody testing. Currently in Ontario it still happens that some physicians and hospitals order HIV antibody testing of patients without their informed consent. We hope the Consent to Treatment Act will address this and require specific, informed and voluntary consent for all HIV antibody testing.
Second, I would like to discuss the power of attorney for personal care under the Substitute Decisions Act, which will provide for the appointment of a power of attorney for personal care. This person will be able to make treatment decisions on behalf of others who will become incapable. Most important, the appointed person must comply with the wishes expressed earlier by the now incapable person, including the right to decline treatment.
At ACT we strongly support this proposed legislation because we believe individuals should have the power to determine the nature of their health care in advance of any illness or disability that might render them incapable. That individual should also be able to decide who will make these treatment decisions. The act will enable, for example, lesbian or gay people to ensure in advance of any illness that a partner or friend will be able to make any necessary treatment decisions for them should they later become incapable. As you know, the law will not currently permit this. In many cases the legitimate role of lesbian and gay partners and other non-traditional family members has not been recognized and has in some cases been entirely eliminated by insensitive health care institutions or homophobic traditional family members.
Third, I would like to discuss a recognized role for lesbian and gay partners under the Consent to Treatment Act. Under this act, in the event that a person becomes incapable and has not appointed an attorney for personal care and no other person has been appointed, either as a guardian by the courts or as a representative under the Consent and Capacity Review Board, then the spouse or partner of the incapable person will have the authority to consent to treatment.
Most important, the act defines "partner" broadly, to include two persons who "have lived together for at least one year and have a close personal relationship that others recognize is of primary importance in both persons' lives." We believe this will include gay and lesbian relationships and will have the effect of granting a legitimate and recognized role for these partners in making health care decisions for persons who have become incapable. We believe, however, that the proposed legislation should specifically mention same-sex partners in subsection 1(2) as an example to illustrate how "partners" is to be interpreted under the act. This will prevent any uncertainty that may arise in recognizing the legitimate role of lesbian and gay partners.
Fourth, under the Advocacy Act advocates will be involved whenever a determination is being made that a person has become incapable. We believe the role the advocate will play is an important one. It will ensure that the rights granted to others to make treatment decisions for incapable persons will not be abused. We also support the limited powers that advocates will be granted under the act to enter facilities and other premises to provide advocacy services to vulnerable persons.
In our experience, particularly with some of our clients who are hearing-impaired, some health care institutions have been unwilling to make the efforts necessary to ensure that adequate informed consent has been obtained prior to treatment. Institutions also tend to defer to traditional family members, even in the event that there is some doubt about a patient's ability to understand or consent to the proposed treatment. We hope advocates will be able to ensure that such vulnerable persons are informed of their rights and options, including the right to require that the hospital obtain adequate informed consent prior to treatment and the right to appoint a power of attorney for personal care in the event a person wishes to appoint a same-sex partner or any other person.
Finally, we would like to make a point with respect to adequate resources and information. To make meaningful the proposed legal options for substitute decision-making, it is essential that the information and means necessary to draw up a power of attorney for personal care be widely available to all persons. We believe the proposed Advocacy Commission should assume some responsibility for this, but as well the government as a whole, in particular the Attorney General's office, should assume some responsibility. This should include public information campaigns, the publication of accessible information pamphlets and the widespread availability of the forms necessary to execute an enforceable power of attorney for personal care.
Mr Fitton: As I said, I am Wayne Fitton from the AIDS Committee of Toronto; I am an AIDSupport counsellor there. I just want to relate to you a couple of incidents. I could sit here today and tell you a number of situations we have come up against where such legislation would have been helpful.
One case I want to make reference to is that a year ago I was working with a client of mine who was a deaf man and was in hospital for treatment and ended up in the final stages of living with AIDS. I was his counsellor and, because we have a deaf outreach project at our agency, was using an interpreter to go in and do counselling sessions with this client and also talk about options that were available to him, and drug treatment, and a possible option too, if palliative care was going to become the issue, that he could make an informed decision as to whether he wanted to be in a hospital or in Casey House.
We were working with this client. The hospital did not see the need for the use of an interpreter or my role in the hospital to help this person be very knowledgeable about the type of treatments and the complications he was experiencing. We were advocating for this client and were making some progress, very slowly. Then the father, who lived in Mexico, was notified and was brought back to Canada because he heard that his son was dying. Then he went to the hospital, to the specialists, and informed them that his son completely understood his father, who was a speaking man, and that the father could interpret all the information to his son around treatment and options available to him. Unfortunately, this was not the case: The son did not understand the information being presented to him. Therefore, I do not feel he had the ability to make choices and options for himself. That is one particular case I wanted to cite.
Second, being an HIV-infected gay male myself, I certainly have a healthy respect for my biological family and have a relationship with my family. Unfortunately, my family does not live here in Toronto. They are scattered in Ontario and British Columbia. Although they are aware of the fact that I am a homosexual male and living with HIV, they are not knowledgeable about the various complications and treatments I have to deal with. Therefore, I would like to have the option to name -- I have two people who are very close to me who are very knowledgeable and aware of HIV disease and treatment -- either a friend or extended family member who is aware of my situation to act on my behalf. Again, I support this.
Mr Lyttelton: My name is Ned Lyttelton, also from the AIDS committee. I would like to present the case of a man whose name was Ray, or that is what I will call him, who was a long-term survivor of AIDS. He was diagnosed early in the history of the disease. He was an active member of the AIDS community in Toronto. He was one of the cofounders of the People With AIDS Foundation and had an extensive network of friends and support people.
Towards the end of his life he was living in a house like a group home, specifically designed for people with HIV. He had expressed, not in writing but on several occasions verbally, to his friends, the counsellors who were working with him and the volunteers who were involved with him that this was where he wanted to die. He did not want to have drastic interventions medically, he did not want to be put on any life-sustaining mechanisms; he wanted to die in the home where he was living. He had a supportive care team of volunteers and friends who were prepared to be there for him and look after him, to do attendant care nursing for him on a 24-hour basis.
His parents, who lived out of town and had very little contact with him during the last months of his life, appeared, saw how he was, which was in very rough shape, basically panicked and took him to a hospital against his wishes. He was not incompetent mentally but he was not in any state to resist this. They were not aware of, and they were also not responsive to, his wishes as his care team explained them to his parents. They insisted that they knew best and took him to the hospital, where he died within 48 hours in a place he had not wanted to die in. It was as if he gave up once he got there. This is one of many situations where, had he had a power of attorney for personal care clearly defined, this would have been avoided. If he could have used an advocate at that point, given the vulnerable state he was in, the advocate could probably have avoided this situation also.
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The Chair: Thank you. Each caucus will have about four minutes. Questions or comments?
Mr Poirier: No question or comment. Thank you for coming forward. The types of cases you bring forward are obviously justification for application of the principle of an advocacy law. I cannot imagine anybody questioning that, and the cases you bring forward are very good. We in the opposition are trying to make sure the law that will come forward will not have any loopholes or defects between what you and all of us want to see happen and what is finally delivered in law; in fact, after the passage of the law. We want to make sure it is the same thing and not something different or something that will cause further problems which may or may not appear now or be hidden. We support it. Thank you for coming forward.
Mr Sterling: I just want to say that, having brought forward the initial legislation dealing with this, your situation of course crossed my mind in terms of particularly the need for durable powers of attorney dealing with personal care. Your community was in my mind when I was drafting that legislation. Your point is well taken. I think it is a very important matter, being able to die in dignity in the surroundings you want.
I was interested in your last comment with regard to the advocates. As I understand these acts, if your friend had been competent at the time, then essentially there would not have been anybody who would have called the advocate at that time. I just do not want you to leave here thinking that the advocate would have interfered at that point in time. As I understand it, the Advocacy Act would come into effect when the health care provider determined that your friend was not competent. If he was mentally alert, as you say he was, I am not sure they would deal with it that way. Maybe you can correct me on your reading of it.
Mr Lyttelton: As I understand the Advocacy Act, advocates are entitled to make advocacy services available to vulnerable persons. Vulnerable persons are not incapable persons. Vulnerable persons could be capable of consenting to or refusing treatment. This, I think, is a good example of a vulnerable person who was being forced to submit to treatment he did not want. Had it been possible to call the Advocacy Commission and say, "We're concerned about this. This person is capable but vulnerable and his wishes are not being followed. Can an advocate go and talk to this person and advise him of rights and options that may be available to him," a very important option would have been to appoint a power of attorney for personal care to make these decisions, if that was something the person wanted to do, or at least have had the advocate say to the parents in this case: "Your son is capable. These are the decisions he has made. The law requires you to respect them."
Mr Sterling: I guess it is a judgement call. The other part is, would anybody in that situation have known to call an advocate? Maybe somebody who was well informed within this particular agency might have. The other question is whether the health care provider, on taking this person in, would have deemed that this person was vulnerable or not.
Mr J. Wilson: I think it is a good question for legal counsel. Under the act, dealing in the true-life story that was presented, would the person dying of AIDS have been entitled automatically, as it were, to an advocate? Would he be considered vulnerable even though he had his capacity?
Ms Bentivegna: Certainly the act would; the definition of "vulnerable" is broad enough to allow for it. But what should have happened in this situation is that the person should not have been admitted. If they were capable and they were refusing treatment and did not want to be there, they should not have been admitted to hospital.
Mr J. Wilson: Which would have been caught by the admission team?
Mr Sterling: But that is the way it is now too.
Ms Bentivegna: Yes.
Mr Sterling: Essentially, if this person had said to the doctor when they arrived at the hospital, "I don't want to be here" -- maybe they felt that there was external pressure and that they could not say that.
Mr Lyttelton: My experience in this situation is that when people are in the very last stages of their life and two people or groups of people are fighting over them, they will give in to whichever is strongest. Certainly in this situation, the parents seem to have been the strongest. They would just not want the conflict, not want the struggle.
The Chair: I believe Mr Chiarelli has a question for legal counsel.
Mr Chiarelli: Yes. It is not something that has occurred to me before, but in the context of the previous question, is there an area in this legislation, or I guess in the situations that can occur, where a person would address his or her mind to a "Should I call an advocate or should I call a lawyer" type of situation? You are talking about rights of individuals. You can have, for example, a particular individual who maybe is of means, who has an educational background or a business background, who may become vulnerable. Almost on reflex, if the question of rights comes up, that particular person might be inclined to want to call a lawyer, or somebody else might want to call a legal aid clinic to look at what his rights might be.
On the other hand, we are creating a structure where we have advocates who are also providing, I guess, advice on rights. I am just wondering what your thoughts are or what consideration has been given to any overlap between those particular areas. Is there going to be an overlap where in some cases advocates would be called in and in others lawyers would be called in? I am just wondering, in practice, what might happen under various scenarios.
Ms Bentivegna: On the advocacy role, I will defer to my colleague Trudy Spinks. But it would be the choice of someone, if they wanted to call -- if both were available, they would make the decision as to who. If it was a legal problem they had, they would call a lawyer. If it was more of a social, to get a service or to get information as to what was available, for example, they might call an advocate.
Mr Chiarelli: But when you get down to short strokes, in terms of advising rights, you are really giving legal advice. There is social and what is appropriate in terms of care etc, but there are also circumstances under which I can envisage an advocate really giving legal advice. Do you see that?
Ms Bentivegna: Not if the advocate contains himself to giving the options available in, let's say, services and so on. If they were to give legal advice in the sense of "This is the law; this is your recourse," then they would be giving legal advice. In the sense of saying, "You have the right to take an action in this case or you have the right to do this or the other," I think there is a difference. I do not think that the two roles would --
Mr Chiarelli: Do you think there is going to be a grey area there when an advocate might be giving legal advice as opposed to other types of advice?
Ms Bentivegna: Hopefully not. Hopefully the training would be clear enough that they would not be giving legal advice.
Ms Spinks: I just wanted to reiterate that I think the functions are quite different. In fact, if you look at the Consent to Treatment Act, it does say that one of the functions of advocates is to help the individual, if he or she requests it, to retain legal counsel, not to perform that job themselves.
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Mr Sterling: It is nice to say that, but the fact of the matter is that in the example you bring forward, there is a confrontation, and people are going to make up their minds on the basis of the advice they have and who is pushing more strongly, as you indicate. I think advocates should give legal advice if they are trained in that area, or whatever it is. I do not know what you quote "legal advice" or "their knowledge of the system" -- I think they should use whatever knowledge they have. We have paralegals who give legal advice, and I would hope these advocates would be probably a lot brighter than members of this committee on this law.
Mr Flanagan: I would like to support Mr Sterling's point. I would be very disappointed if advocates declined to give legal advice in the circumstances, very basic legal advice that you have the right to refuse treatment. If an advocate would be unwilling to give legal advice of that nature, that you have the right to appoint a power of attorney for personal care -- I do not think it would be at all helpful to suggest that advocates ought not to give legal advice in a circumstance of this nature.
Mr Fram: Mr Sterling is absolutely right. Advocates in many cases use the law to affect what is done: "You do not have the right to admit this person under the law without their consent or over their objection." So the law is a great part of the advocate's tools. "You cannot deny the service because it is contrary to the Human Rights Code." Those are the kinds of things that advocates do all the time in advocating for services.
I think that certainly is the experience of the Advocacy Centre for the Elderly, which is a community legal clinic with an advocate in it. It gets people's attention when you say, "Where is your authority for this?" and when you take it a step further. That is why most people believe that, just as there is for the adult protective service worker program, there will be a nexus, if not in law then in practice, between the community legal clinics and any advocacy service and people in the field. That is where they will go. That is where they will refer their situations where there is legal advice and legal assistance or the legal aid plan. these things will not exist in isolation. When there has to be an escalation of violence, in essence, or of assertion of legal rights, the advocates will know where to go to ask questions and to get further help for their clients.
The Chair: Thank you. Very briefly, Mr Chiarelli.
Mr Chiarelli: If I could just add a follow-up, in the normal course, in some of the things they would be doing, they would almost be acting as paralegals in terms of providing advice. Are you --
The Chair: Thank you. Mr Malkowski.
Mr Malkowski: In relation to the deaf individual you mentioned who was living with AIDS, that certainly has an impact on me, since I have seen members in my own constituency who are deaf and who have come to me and talked about the difficulties in getting interpreters provided by the hospital. Also, the treatment centres or professionals have labelled people incompetent following the word of family members, without having spoken to the person directly.
What recommendations can you see as being necessary? Should we be looking at building in specific recommendations such as training in the areas of communication and so on? I think this is a broad area that affects various types of communication in order to provide correct service.
Mr Martel: I think it would be essential that the advocates have certain training that is culturally sensitive to groups of people they are going to be encountering, which might involve them understanding communication styles of different cultural groups.
Certainly for our interests in terms of having a deaf outreach program, it is essential that those coming in contact with people seeking us out, people who are deaf and have HIV disease, be aware of their communication, be aware of their cultural reality, because they are faced with a very complex illness, and without language to be able to understand the complexity of the illness it is a very frustrating event.
The other reality is that it is very important for us that advocates understand gay culture, that they understand that there is an enormous amount of dynamic tension between families and their gay children. The example we provided you of that is not unusual. It is not unusual to have been abandoned by your family for years, and all of a sudden, at the point of your life ending, they rush in and begin to want to do all this stuff. It is really important for us that those things get translated as well.
Mr Malkowski: The Advocacy Act, I think, outlines very clearly that organizations such as yours can recommend individuals to sit on the advisory committee, and that is where I see a really critical role. We are trying to make sure we meet the needs of all individuals by making sure that people such as yourself are represented.
The Chair: Thank you, Mr Malkowski. Mr Winninger.
Mr Winninger: I think the areas I wanted to explore with you have been adequately covered. I would just like to thank you for sharing your perspective with us. I know you urge a public information campaign in connection with this proposed legislation. I expect your committee could be an ally with the government in getting the message out.
The Chair: Mr Martel, Mr Flanagan, Mr Fitton and Mr Lyttelton, I would like to thank you on behalf of the committee for coming and giving your presentation today.
RESEARCH ETHICS COMMITTEES
The Chair: I call Dr Meslin forward. Good afternoon. Would you please introduce yourself for the record and then proceed.
Dr Meslin: Thank you, Mr Chair. My name is Eric Meslin. I am the assistant director of the Centre for Bioethics and an assistant professor of philosophy at the University of Toronto. I obtained my MA in 1985 and my PhD in 1989, specializing in philosophy and bioethics, from Georgetown University in Washington, DC. I am also the associate director of the Clinical Ethics Centre and chair of the research ethics committee at Sunnybrook Health Science Centre. I was research ethics officer of the American Psychological Association and program analyst at the Office for Protection from Research Risks at the US National Institutes of Health.
I am pleased to appear before the committee this afternoon on behalf of several research ethics committees of the University of Toronto teaching hospitals and affiliated institutions. My purpose is to discuss specific provisions of Bill 108 and Bill 109 which refer to research involving incapable persons. These provisions are subsection 47(6) and subsections 56(5) and (6) of Bill 108, and paragraph 1 of section 15 of Bill 109. These subsections are somewhat problematic because they are ambiguous with respect to intention and language and because they omit important procedures currently in place for protecting the rights and welfare of research participants.
I would also, in concluding my remarks, like to offer two recommendations: first, that paragraph 1 of section 15 be omitted entirely, and second, that the criteria for permitting research on patients incapable of consenting be considered separately from this legislation.
In principle, I have to say that sections 47 and 56 are not especially problematic, assuming that it is the intention of Bill 108 to permit research on incapable persons only if an attorney is authorized explicitly through a power of attorney for personal care or court-appointed guardian to consent in this regard.
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However, there are at least three possible interpretations of paragraph 1 of section 15 first, that the section is not intended to address the issue of research on incapable persons at all and that the status quo remains; second, that it intends to permit research on incapable persons only through the mechanisms set up in Bill 108; and third, that it is intended to explicitly restrict research on incapable persons. Even if this last interpretation was not intended, paragraph 1 and the others are somewhat problematic, both because of ambiguous language and because of some difficulties in interpretation for current research.
First, the ambiguity in language: The sections are ambiguous because important terms are not defined, the most important of which is "research." This has been defined elsewhere, for example by the Medical Research Council of Canada, as "the generation of data about persons, through intervention or otherwise, that goes beyond that necessary for the person's immediate wellbeing." Research, therefore, can range from activities such as observational studies to surgical interventions, and from those which offer some prospect of benefit to the subject directly to those designed to gather data, whose value may be to future patients.
Further, both in ethics and, I suspect, in law, it is inappropriate to refer to the power described in sections 47 and 56 as giving consent to research on behalf of an incapable person. Instead, perhaps this authority should refer to giving permission, since consent is an activity that only an individual can engage in. If, therefore, it is the intention to include research on incapable persons under this collection of legislation, this terminology would need to be clarified.
Now to the difficulties in application. There are two that might arise if these sections remain in their present form. The first is that, regardless of when this legislation takes effect, patients who are now incapable and who have not had an opportunity to complete a power of attorney for personal care will be denied the opportunity to indicate a wish to participate in research. Since it is now common for patients such as those with HIV infection or cancer to actively choose to participate in research because it may be one of the best opportunities to get access to new medications, this provision might paradoxically deny them the right to consent in advance.
The second difficulty is that neither bill discusses the process of ethics review of research studies involving human subjects. For more than 45 years, following the war crimes trials at Nuremberg following the Second World War, concern for the protection of the rights and welfare of human subjects involved in research has occurred principally through two mechanisms: codes of ethics that are codified in law in many jurisdictions or at least required by granting agencies that specify their provisions for ethical conduct in research; and second, the evaluation of all research studies based on their scientific and ethical appropriateness by independent research ethics committees. Committees critically assess the quality of informed consent, the risks and benefits of the research to the subject and possible invasions of privacy or access to confidential information.
Since 1975 every major international and national code of research ethics has permitted the involvement of patients who are unable to consent on their own behalf only if additional rigorous conditions are followed. These conditions include: the research must be of scientific importance; it must be impossible and infeasible to conduct the research on patients who could consent; it is likely that the benefits to the group of individuals with the condition being studied outweigh the impositions on them; the research should focus only on the particular aspects of the condition being studied, and finally, the risks of harm are minimized, including inconveniences, indignities or impositions on privacy or confidentiality.
These criteria are regularly used by research ethics committees within the University of Toronto system and have been proposed by the Law Reform Commission of Canada in its 1989 working paper on biomedical experimentation.
Now a word about the research ethics committees themselves. They are actually made up of many disciplines within the institutional setting. In hospitals, for example, these include medicine, nursing, surgery, pharmacy, psychology, as well as persons trained in philosophy, theology and law. Most committees already include a member from the community, a requirement that is contained in the Medical Research Council of Canada guidelines. I should note that many of the committees -- and mine is no exception -- regularly must defend their rigorous review process to researchers who believe it takes too long and imposes too many restrictions on research. The difficulty, therefore, is that the legislation leaves unclear the status of these committees and might possibly be inconsistent with existing codes of ethics.
For these reasons, we would like to recommend that paragraph 1 of section 15 of Bill 109 be omitted entirely. In addition, we recommend that the criteria for permitting research on patients incapable of consenting be considered separately from this legislation. Since it is likely this will already occur, on behalf of the chairs of the research ethics committees who are noted I would be pleased to offer any assistance you might require in this process.
I would be pleased to answer any questions. Thank you for the opportunity.
The Chair: Thank you. About five minutes for questions and comments. Mr Sterling.
Mr Sterling: I think the government was faced with a difficult problem here in paragraph 1 of section 15, and I understand why it would have been tempted to stick this section in because of the kind of horror stories that one can conjure. Somebody who is not familiar with the system in particular might paint and exaggerate the situation.
Has the government, in terms of the three intentions put forward by the presenter on page 2, laid its mind as to which it is trying to achieve by paragraph 1 of section 15? In other words, is it that the section is not intended to address the issue of research on incapable persons at all and that the status quo remains; that it intends to permit research on incapable persons only through the mechanisms set up in Bill 108, or that it intends to explicitly restrict research on incapable persons even if the last interpretation was not intended? Have you decided?
Mr Wessenger: I think it has been made clear that the intention of the legislation is not to affect the status quo. I think it is very clear that the intent of the legislation is to leave the common law as it presently exists with respect to the matter of research.
I might just add while I am speaking, are you aware that the ministry has appointed Professor David Weisstub to do a report on this matter? I certainly would suggest that you make your submissions to Professor Weisstub with respect to the matter. I think really that addresses your question of being separately considered because I think it indicates it is being separately considered.
Mr Sterling: Are you then telling us that paragraph 1 of section 15 will not be passed, because if you want to maintain the status quo then there would not seem to be a need for paragraph 1?
Mr Wessenger: In the opinion of legal counsel -- I think she expressed that opinion -- paragraph 1 of section 15 does not affect the status quo. That matter will be reconsidered with counsel, but certainly it is the present opinion of counsel for the ministry that it does not affect the status quo. However, if it needs some clarification I am sure that can be looked into. I think ministry staff might have something to add.
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Ms Auksi: Could I just add a word of clarification? The legislation does apply to consent where the patient involved is mentally capable. So what this section does is make it clear that the substitute consent provisions in this act are not ones that could be used to authorize research involving mentally incapable individuals. The provisions of this act cannot be taken to authorize research involving mentally incapable individuals. If there is such authority in common law, then it remains. Whatever is the common law situation remains in effect.
Mr Sterling: My concern is that you are the second witness to raise this issue. If the interpretation is there -- I do not know whether you have had any kind of legal opinion on this section -- certainly our job as legislators is not to confuse the law but to try to make it as clear as possible. It is not easy always, but if that is the intent of the ministry, having heard the response, if you can suggest something in between which is more comfortable to you, I invite you to do that for us.
Mr Chiarelli: Can I ask one question? I do not understand the information that has been given for why paragraph 1 of section 15 is there. I wonder if somebody could take another run at me to see if I can figure it out, maybe say it in a different way. I just do not understand why it is there.
Mr Wessenger: I was going to have counsel explain, if that is satisfactory.
Mr Chiarelli: I know you did it this morning and you did it again now, but I am still having a bit of trouble following it.
Ms Bentivegna: The reason section 15 was put in was that we wanted to make it clear that the substitute decision rules set out in this legislation for incapable people cannot be used when the decision to be made is whether an incapable person is going to take part in, for the first example, a research project that is not therapeutic, that does not have any medical benefit for that particular person. The reasoning was that that is a special case that needs to be studied further to see if there need to be other rules set up around that type of consent.
Mr Chiarelli: Can we be very specific? Dr Lowy mentioned this morning that it is a common feature and accepted within certain restrictions that someone who is incapable and who has a guardian or a substitute decision-maker as it is now regularly gives consent for research or treatment to that individual, whether it is therapeutic or not. Are you saying that the status quo is going to stay the same as you have just explained it?
Ms Bentivegna: Basically what I am saying is that, yes, if the researcher feels that he or she is obtaining a valid consent from someone who is authorized -- because right now, the only rules that exist are common law -- then that would continue.
Mr Chiarelli: Are you saying that it has to be specified in the legal document which gives the authority to a substitute decision-maker that they can participate in experimentation?
Ms Bentivegna: I think that right now a lot of it is being done informally. I do not think there is legal authority because most people do not have guardians under the Mental Incompetency Act.
Mr Chiarelli: I think you are just admitting that it does give the effect which gives rise to the concern of Dr Lowy and this particular presenter. I think what you are saying is that there must be something in the authority or the power specifically saying that experimentation can be permitted. Otherwise, under this legislation, it is not permitted.
Ms Bentivegna: All we are saying is that this legislation, Bill 109, cannot be used as authority for giving that kind of consent. If there is such authority in any other legislation or in the common law, then fine, that authority will be used, but what we are saying is that the rules in Bill 109 do not authorize that type of consent or permission.
Mr Chiarelli: I would suggest that you are creating a conflict of laws here, or a confusion in the legal situation as it presently exists. I really want to reiterate the concerns of Dr Lowy and this particular presenter, because as it has just been explained by both of you, I think you are changing the common law. I think you are putting in a provision which limits or restricts the area where experimentation authority can be given, as you have explained it and I think as was explained over here. Unless you can be a little more specific on what the intention is here, I think the confusion is going to continue.
Mr Sterling: I would like counsel to stay there for a moment and I would like to get this clear. If I am interpreting correctly what is coming back, you are telling me that if there is a guardian, the guardian cannot okay research on an individual unless the individual is going to benefit personally from that research. In other words, it is cancer or it is --
Mr Chiarelli: It is therapeutic.
Mr Sterling: It is therapeutic. That is the intent?
Ms Bentivegna: That is my understanding of the law as it is now, and I guess what this is saying is, "We're leaving that."
Mr Chiarelli: It is not Dr Lowy's interpretation of the law.
Mr Sterling: I guess my problem is that I do not disagree with the intent and the way it is. My concern is that there does not seem to be any distinction in the definition between research which is therapeutic to the patient and research which may be something else.
Ms Bentivegna: The reason for using the wording "whose primary purpose is research" rather than "whose primary purpose is treatment" is because treatment is being defined and all the rules of how treatment can be given. That is the distinction, treatment being the therapeutic. Anything outside of that, you know, those three others we have listed, is considered not to be treatment.
The Chair: Thank you, Mr Sterling. Mr Wessenger.
Mr Sterling: Did the doctor want to respond?
Dr Meslin: I am enjoying the discussion so far, but --
Mr Sterling: I am sorry.
Dr Meslin: Perhaps I could at least offer an observation. I am just a philosopher, not a lawyer, so I do not want to wade into interpretations of the law. I think my colleague Professor Dickens, who will be speaking after me, might be more appropriate to comment on that. But as chair of a research ethics committee operating in Canada, I can tell you that we have complied with not only local requirements for the review of research studies which permit the involvement of persons who have a diminished capacity to consent. I think, as is known to the members here, competency is not a threshold concept, all or none. One can be more or less competent to consent to various procedures.
As I attempted to indicate in my remarks, research should be regarded as part of a large spectrum, from observational studies which are conducted regularly involving, for example, patients with various dementias, Alzheimer's being a particularly acute example, where there is no intervention at all and may not be for their direct therapeutic benefit. Where there is no breaking of the skin, research ethics committees across Canada have permitted such experimentation, such investigation, to occur. This is consistent not only with local hospital regulations, but also with U of T guidelines and Medical Research Council of Canada guidelines. I would perhaps draw your attention to pages 30 and 31 of that document to clarify the status of research involving incompetent adults in Canada.
Mr Wessenger: I would just like to clarify your last statement. Is it fair to say you are telling us that in Ontario right now, non-therapeutic research is being done with respect to people who are incapable? Could I have an answer to that question?
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Dr Meslin: Yes, I would be happy to answer that question. I think the distinction between therapeutic and non-therapeutic research is a bit of a non-starter. It is a bit problematic. Not all research can be divided into interventions that would not benefit the patient as opposed to those interventions that will benefit the patient. Many studies are investigations where there is a possibility the patient will benefit, but the principal intention is to gather data that may be of use to others. When I talked about oncology studies, that is a very good example of a situation where a new chemotherapy agent may or may not benefit that particular individual at that particular time, depending on, for example, whether the patient is enrolled in a study comparing two drugs, one more and one less effective.
I do not mean to change your question around, but I think we need to get away from the distinction, which is a very blunt instrument, between non-therapeutic and therapeutic research. The spectrum is very wide and investigators across the country are trying to deal with it. A distinction I would use or support is between interventions that are designed specifically to benefit the patient. There are innovative therapies and there are experimental therapies and experimental interventions, not as clear-cut a distinction as may be described here.
Mr Wessenger: If I could just follow that up, what you would argue then is that the research presently being done -- all of it, you would say, from your perspective -- would have a therapeutic concept in the sense that it might have had a possibility of benefiting the person receiving it. Is that what you would say?
Dr Meslin: I would not say all, but the vast majority of research that any committee at any institution I have been affiliated with would approve. Clinical studies, for example, are studies that will at the very least -- we are talking about incapable persons, not persons who can consent on their own behalf to very risky research. We are talking about research that carries a low threshold of risk -- in fact, minimal risk is the standard we use in committees -- that will have no prospect of harm or very little prospect of harm. Those are the kinds of studies that perhaps a misinterpretation of language here could stop or threaten.
The Chair: Ms Akande, you have one minute.
Ms Akande: I do have a question, because there was a presentation earlier today from Frederick Lowy in which the non-therapeutic and therapeutic distinction was made. I was given to understand that these two categories were used in order to decide whether the research that would be done on someone who would be vulnerable, who might require some support, or unable to make decisions, would be divided into these two categories and that the person would then be treated differently according to the category in which he or she fell. Is that not correct?
Dr Meslin: I think that is fair, and maybe there are some semantic difficulties. For purposes of the legislation here, concerned with the way it may restrict research, given the concern of research ethics committees, I think the rule, the ethical principle we use, is that you should not enrol patients who are incapable of consenting on their behalf in research that at least does not benefit them and at worst harms them. The goal, of course, is to enrol them only in research that creates the very minor risk of harm but is outweighed by the possibility of benefit to them. In that way, yes, I think that is a fair distinction.
Ms Akande: So the categorization does apply, and does apply in the decision-making.
Dr Meslin: I think it applies, as I said, as a blunt instrument, and as each individual protocol is reviewed, to try and assess the harms and benefits to the individual, which may be a mixed bag.
The Chair: Dr Meslin, on behalf of this committee I would like to thank you for taking time to come and give your presentation.
HUMAN SUBJECTS REVIEW COMMITTEE, UNIVERSITY OF TORONTO
The Chair: I will now call forward Professor Dickens. Good afternoon. Would you please identify yourself for the record and then proceed.
Dr Dickens: My name is Bernard Dickens. I am a professor of law at the University of Toronto and chair, and speaking on behalf of, the Human Subjects Review Committee of the university. I appreciate the opportunity to be here and regret that I am going to take you back into the morass of paragraph 1 of section 15 of Bill 109.
First, though, I think it important to recognize the initiative the other ministry has promised to undertake, a separate study of medical research on persons incapable to consent. The university certainly appreciates the need for this inquiry and will be very happy to collaborate with Professor David Weisstub and with any other research initiatives the Minister of Health considers appropriate.
I want to put the issue of research in a slightly broader context before focusing on paragraph 1 of section 15, with which you are already familiar. There has been an interesting movement in the context within which medical research is assessed. That is, it was not too long ago that the imagery was essentially a Frankenstein imagery, a One Flew Over the Cuckoo's Nest imagery of demented, irresponsible people doing tormenting things to the vulnerable. Although we would like to think that is not a prevailing reality, it serves to warn us that it might be and that it might become such and the need for protections clearly exists.
On the other hand, there has been a dynamic of which I think one ought to be conscious. That is, we now have populations, such as people living with AIDS, demanding research and demanding that they be admitted to research protocols. We also have interest groups on behalf of those with Alzheimer's disease and those with juvenile onset diabetes demanding that research be done. We also have a phenomenon of women's groups complaining that in the past women have been precluded from ethical research protocols on what seemed at the time to be ethical grounds, and the result is that there are products that women are now taking on prescription or buying over the counter that have not been tested on women with regard to efficacy or safety of dosage levels and we have women's groups requiring that research be done on medications to test their effectiveness and their safety for women.
The idea that research can only be harmful and is better not done than done on grounds of safety is a concept we have moved beyond, in that we now have a perception that not doing research can be harmful to vulnerable target groups. To that extent, then, we have to explore the law under which research can be done, and that exists under the general law. Having heard the earlier discussion, I acknowledge the intention of the legislation to leave the general background law unaffected by Bill 109 and to postpone the consideration of new laws to the report of the Weisstub committee and perhaps to other recommendations that may be made.
I am going to propose, and you will see this in the opening recommendation of my brief, that paragraph 1 of section 15 does not achieve that intention and in fact is seriously dysfunctional.
The general law is restrictive, and I think attention could be drawn to a distinction that was not addressed in the discussion just concluded with Dr Meslin in the context of paragraph 1 of section 15, because section 15 reads -- I am certain you are familiar with the language -- "Nothing in this act authorizes a health practitioner to perform any of the following procedures on a person who is incapable..." and the focus is on procedures on a person.
Much research does not involve procedures on a person. Much research is involved with such matters as retrospective file examination, which will identify the individual and in that sense violate privacy, but not represent any intrusion on the person's physical integrity.
The existing law is very restrictive regarding the physical intrusions that can be undertaken in the cause of research. The leading decision here is a unanimous decision of the Supreme Court of Canada in 1986, the Eve decision, which is the source of our proposition that those who are guardians of the mentally incompetent, whether they are incompetent due to disability or simply immaturity, young years, can employ their powers only to authorize intrusive procedures that are beneficial.
This leaves a margin of uncertainty because there are procedures that are not beneficial but are not harmful either, such as touching people, fitting electrodes, for example. They would come within the concept of the risks of everyday life, that is, what parents can authorize for their children. They do not go to the extent of drawing blood, which would be intrusive, but they would not necessarily be beneficial.
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There is a margin of uncertainty about quite what the Eve decision means with regard to procedures that are not intrusive but that would otherwise, and with consent, constitute assault both in civil law and under the Criminal Code. But with regard to procedures that are invasive, and I would include routine blood sampling in that category, the Eve decision is very restrictive, indicating that intrusive procedures cannot be undertaken other than on beneficial grounds. In a therapeutic context we would include diagnosis and routine monitoring of therapy, but anything that is purely for research or that is more research than therapy would be precluded by the Eve decision.
The existing legislation is very restrictive. Whether it ought to remain as restrictive as it is, whether it might be liberalized, as many investigators would urge, is something that will probably be encountered when the Weisstub committee report is received. There seems to be a tenable argument that, in law, provincial legislation could authorize guardians to give consent to procedures that would have the effect of rendering them lawful under the federal Criminal Code, although obviously that is something that will eventually have to be tested.
The existing general law then is restrictive and investigators may want to address you independently on that. The effect of Bill 109, however, is to impose an even more chilling impact upon the initiatives that researchers think they can take because the language, I think inadvertently, links research with two other procedures that are demonstrably illegal.
If we look at what accompanies section 15, paragraph 1 of Bill 109, that is section 15, paragraphs 2 and 3, they deal with two procedures that are unlawful. Paragraph 2 deals with "sterilization that is not medically necessary for the protection of the person's health." The 1986 unanimous decision of the Supreme Court of Canada makes it clear that is unlawful and cannot be undertaken on the consent of a guardian. Paragraph 3 addresses, "the removal of regenerative or non-regenerative tissue for implantation in another person's body."
The provincial Human Tissue Gift Act is definitive on this. It begins by stating that nothing can be done by way of organ donation that is not authorized by the act. The act then goes on to say that donations from living people can affect only those who are aged over 16 years and who are mentally competent. So it is clear that non-regenerative tissue or certainly organ donations -- I will not go into the distinction between tissue and organs unless members of the committee wish -- would be unlawful from mentally incompetent people.
The difficulty we then face is really one of legal drafting. It is almost a point of statutory interpretation. It is one of those legalistic points that lawyers like to apologize for before they get into them in detail. There is a rule of construction of statutes that clauses will take their meaning from what accompanies them.
That is, they are not read in isolation, they are read in context. The context of section 15, paragraph 1 is obviously section 15, paragraphs 2 and 3. Paragraphs 2 and 3 both address issues that are clearly unlawful and the inference is therefore invited that research addressed by paragraph 1 is also unlawful. In that sense the bill is not neutral with regard to the status quo.
If its intention is to preserve the status quo, the embodiment of that intention in section 15, paragraph 1 will be ineffective and, worse, dysfunctional. My recommendation is that if section 15, paragraph 1 is not omitted, then at least it be redrafted separately from paragraphs 2 and 3 in the language that I have indicated in my brief.
The harmful effect of section 15, paragraph 1 is already being felt; that is, section 15, paragraph 1 is having a chilling effect on the research initiatives that the research community feels it appropriate to take because of the fear that the research they are proposing will become unlawful or indeed that it already is unlawful. The existing parameters of legitimate research are being narrowed, I feel inadvertently in view of the minister's prior statement, by the language of section 15, paragraph 1.
This is especially costly at this time because the research communities of the universities are struggling to retain their first-rate researchers. Training and recruiting and retaining researchers is becoming more burdensome, and you will be aware of the fiscal restraints under which the universities anticipate having to operate in the future.
If researchers feel that not only will they have to cope with the shrinkage or at least the stabilization of resources that are in prospect, but also the fear of added liability to legal proceedings, which could be civil proceedings for malpractice or criminal proceedings for assault or disciplinary proceedings before a provincial licensing authority, the College of Physicians and Surgeons of Ontario, then they will either forgo research careers and choose to be clinicians or they will pursue research careers elsewhere. The history of a university is that when good researchers are attracted elsewhere they do not come back.
In that sense, section 15, paragraph 1 of Bill 109 is already doing harm, in that research is being deterred which is lawful under existing provisions because this pall of doubt and fear is being introduced by language which I am certain is not the intention of the legislation. This is not a neutral measure. It is causing disadvantage.
I would therefore like to take the opportunity to recommend either that section 15, paragraph 1 be omitted from Bill 109 or that it be expressed in different language, separated from the two illegal procedures, perhaps in language such as I have proposed, that nothing in this act changes the law affecting a medical procedure whose primary purpose is research proposed on a person who is incapable of consenting to the procedure. Thank you, Mr Chairman.
The Chair: Thank you, Mr Dickens. We have approximately five minutes for each party to ask questions. Mr Chiarelli.
Mr Chiarelli: Professor Dickens, you indicated that section 15, paragraph 1 uses language which you are sure is not the intention of the drafters. Can you tell me from your reading of the section and from what you have heard here today what is your assessment of the intention of the draftsperson who drafted this or of the government in bringing it forward?
Dr Dickens: I take the intention from the earlier statement of the minister in introducing the bill to say that its purpose is not to affect research regarding those who are not competent to give their own consent, but that is a matter that is pending further inquiry and will be dealt with subsequently.
Mr Chiarelli: Why is the section there?
Dr Dickens: I think it is there for the avoidance of doubt, as lawyers say, but it links section 15, paragraph 1 -- it is not so much the language of section 15, paragraph 1; it is the context that it is linked to two clearly unlawful procedures. The inference is that section 15 deals with three unlawful procedures.
Mr Chiarelli: Is it your understanding, quite apart from the legal context, that the government would not want to change the existing situation with respect to non-therapeutic experimentation?
Dr Dickens: Yes, that is my understanding.
Mr Chiarelli: As indicated by Dr Lowy this morning?
Dr Dickens: Yes, I think that is what is intended. This form of drafting does not achieve it.
Mr Sterling: I am concerned with your latter statement as to the effect the bill is having at this stage on, I guess you would almost call it the morale of medical research in terms of what is going on here. Is there any other evidence that you have that researchers are in fact looking at section 15, paragraph 1 and saying, "This is going to restrict our ability to conduct research"? Is that anecdotal, the information you are saying, or have you talked to other people in other universities about this?
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Dr Dickens: Yes, it is anecdotal and it can only be anecdotal in that, as participants in the processes reviewing protocols, we can only review the protocols that come forward; we cannot review the protocols that researchers choose not to develop.
Mr Sterling: I think everybody acknowledges there is a problem with section 15, paragraph 1. In fact, if it is having an immediate impact on the attitudes of people here in the province who are involved in medical research -- and you might not be able to do this on your own at this time -- would it not be most prudent for the minister to say that paragraph 1 will not stay and we may in fact replace it with something else? The argument has been used that we are going to talk about other sections and all the rest of it. That argument is valid if the legislation in its present form is not having an effect, but we are hearing witnesses today who are saying that paragraph 1 is having a negative impact on our research community. If we accept that, then surely there is an onus on the minister to indicate intention at this time with regard to that section.
Mr Wessenger: The minister has clearly indicated her intention with respect to the legislation to not affect the existing situation under common law, and I assume that matter will be looked into from a legal perspective and will be considered.
Mr Sterling: That is fine and dandy to say, but why do you not be clear about it and just say section 15, paragraph 1 is not going to stay?
Mr Wessenger: I think to be fair, Mr Sterling, it is a matter of a legal decision as to what the most effective way is to make clear the intention. It is obvious that various lawyers may have different views occasionally, but the intention is the same and certainly I would like to assure Mr Dickens that the intention is not to restrict the common law situation with respect to the bill.
Mr Sterling: But we are having evidence which is saying that everybody believes it does restrict. Why do you not say --
The Acting Chair (Mr Fletcher): Excuse me, Mr Sterling. The purpose of this is not to have an argument across the floor.
Mr Sterling: Sure it is.
The Acting Chair (Mr Fletcher): It is to listen to presentations. You have heard the clarification and there is no need for an argument. That is all I am saying.
Mr Sterling: Sure it is.
Mr Wessenger: The only thing I would like to say is that we are all lawyers and we all may have different interpretations of what somebody may say. This is always true with legislation.
Mr Curling: There are too many lawyers in this room.
Mr Wessenger: Just for my own clarification, Professor Dickens, because I am trying to understand this point, I would like if you could clarify for me what legal authority now exists under common law or otherwise for a substitute decision-maker to consent on behalf of an incapable person with respect to research.
Dr Dickens: The distinction would have to be drawn between invasive and non-invasive procedures. The law traditionally has not distinguished different functions of guardianship. Guardians have had the capacity to stand in the shoes of the individual, and certainly historically one understood that guardians could approve certain procedures that were invasive in the fairly generally way; that is, the proposition was that if the individual was not competent to make his or her own decision, then a lawful guardian could discharge that function.
But the Supreme Court court in the Eve case made it clear that the limit of that power is functional; that is, guardians do not have powers to do anything that people who are competent can do for themselves. They merely have the power to discharge their functions and their functions are to secure the wellbeing of the individual and advance therapeutic interests. They have no power to do things that are not beneficial. They have no power to use their legal control of a dependent person for any agenda or advantage of their own or of their parties.
In that context the Supreme Court precluded a sterilization procedure on a mentally incompetent woman because of the degradation on her physical integrity, even though the court was aware that might open up social opportunities for unchaperoned time with members of the other sex. The court took a very restrictive view saying that the highest value is the preservation of physical integrity and guardians could not use their power to authorize the violation of physical integrity in ways that were not for the benefit of the person intended to be directly affected.
Mr Wessenger: So basically a guardian could only consent -- just say if I am correct -- to a research project with respect to an incapable person which did not invade his physical integrity.
Dr Dickens: Yes, by which I would take authorization of file inspection or perhaps running additional tests on a blood or urine sample already taken for therapeutic or diagnostic purposes. That violation of privacy I think could be authorized again within limits, but no physical touching and no blood testing.
Mr Winninger: I wonder whether subsection 47(6) of Bill 108 might alleviate your concern to some extent in that it states "Unless it expressly so provides, the power of attorney does not confer authority for the attorney to consent to a procedure whose primary purpose is research."
Dr Dickens: Yes, I think that is appropriate regarding a person who has been sufficiently competent to execute a power of attorney. If that person did not expressly opt into research, the attorney is not empowered to do so. I think that is consistent with the common law position regarding those who are not mentally competent.
Mr Curling: I want to ask the parliamentary assistants to consider this: It is consistent in the last two days that section 15, paragraph 1, is causing a lot of problems. Since we are all cooperating in a non-partisan situation, I wonder if you could maybe come back tomorrow after discussing this of course with the minister and the legal department, and they could consider taking out section 15, paragraph 1, since it has immediate negative impact on the situation.
Mr Wessenger: I think we all know the appropriate time to deal with that or appropriate amendments is at clause-by-clause.
The Chair: Professor Dickens, I would like to thank you on behalf of the committee for taking the time out and giving your presentation.
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MARGUERITE YOUNG
The Chair: I would like to now call forward Marguerite Young. Good afternoon. I would like to welcome you here. Could you please identify yourself for the record and then proceed.
Mrs Young: I am Marguerite Young. I live at 282 Burnham Street in Peterborough. I am a mother of a schizophrenic son. I have brought my other son, Charles Young, who is a controller for Cardinal Corrugated Containers, Pickering, with me as family support.
I am here today as a very concerned mother of six grown children, one of whom is a son of 31 with severe paranoid schizophrenia. You have no idea the burden of responsibility I feel here today to represent families similar to my own. This is not a burden that has been placed upon me but one I have placed upon myself, because in my 10 years of dealing with this disease I have met so many families who feel inadequate to speak publicly for themselves or for their loved ones.
As I hold a master's degree in education, I feel compelled that those of us who can speak must do so, and speak with the conviction and the knowledge we have gained through our years of experience in coping with schizophrenia. I reflected and I worried many hours and many days wondering what I should say to you today and how much I should say to touch your hearts and minds so that you would scrap this legislation or at least make major changes to it. Touch you I feel I must because what you decide will affect not only my son and my family but many others for life.
If I become emotional, you should not interpret that to mean that what I am saying is not rational, logical or well reflected upon. One can be rational, logical and reflective but feel so strongly about the issues as to become emotional.
I have spent much time studying Bills 74, 108, 109 and 110. Even with legal interpretation, one must conclude that in their present form they present insurmountable obstacles for the families of those who care for their relatives and want to remain involved in their lives.
The family unit has always been the central social institution of society and the anchor of the community. It is the substance of the past and the wellspring of the future. It remains still the major institution and backbone of the country. Why would a government discourage and disable the family unity rather than encourage and enable it to continue to function as a unit?
Who would know best what decisions are best for the seriously mentally ill, a public advocate with no relationship or no real understanding of the disease or a committed family which has suffered along with its relative and, through years of experience, gained a knowledge of and insight into this disease that exceeds even that of the professionals? It is the family, and only the family, that knew these human beings before they became ill. It is only the family that knew what they thought, what their values were and what they wanted for their lives. I cannot emphasize this point enough. What they might say they wish after they become ill is affected by the illness. It is affected by the delusions, the hallucinations, the severe paranoia and the damaged processes caused by this disease.
If you are a Christian or have studied Christianity, you will know that Jesus was one of the greatest teachers of all time. He taught by story, and so I am going to tell you just a little of my story today. If you were to hear all the stories of the families across Ontario, mine would not be the worst. I am merely using part of mine as an example of the suffering and hardship families encounter with the system as they struggle to act in the best interests of their loved ones.
My son Fergus's schizophrenia became full-blown at the age of 21. One of his fixed delusions includes his belief that he has a rupture in his stomach that doctors here cannot find because they are mind-controlled by the RCMP, the CIA etc. If he could get to a Third World country where the doctors were not controlled by these agencies, then they could fix his stomach and also prove that he had been poisoned all his life. He believes that he has implants in his ears and that through these implants he receives messages he cannot interpret. He believes that raw meat is easier on his ruptured stomach than cooked meat and that therefore he should eat raw meat. He believes that he will be an important figure in a Third World confrontation and will be killed in this but that in the process he will have to kill me. He believes that I and others have been poisoning him all his life and that I should be killed.
I could speak volumes of the implications that these delusions have had on Fergus's wellbeing and our ability to care for him, but I am not going to address that today because it would take a day and I guarantee I would have you weeping in your seats with me. When a psychiatrist can find a medication that stabilizes his chemical imbalance to a degree, then the delusions, even though they remain fixed and there, sink into the background and are not acted upon. This can be a very long and difficult process, and better medications are desperately needed. It is my contention that if the government were to direct the moneys it will need for public advocates to research, both the moneys and society would be much better served.
I wish now to speak to you about the susceptibility and the vulnerability of those with schizophrenia. In the process of time my son has been in and out of many psychiatric institutions: the Peterborough Civic Hospital's psychiatric unit, the Clarke Institute of Psychiatry in Toronto and Kingston Psychiatric Hospital. He has needed to be involuntarily committed for a considerable length of time. The last period was for over two and a half years. He was desperately psychotic, was a danger to himself and others and had absolutely no insight into his condition.
As you know, a patient can appeal his committal at any time, but not once did Fergus ever ask for a review board until a patient advocate would go to him every three months to tell him that he was being recommitted and that he had a right to a review board. Fergus is an intelligent young man. He has a year of science from the University of Guelph and a half-year of business college. He knew he could ask for a review board, but he never once asked for one until he was visited by a patient advocate.
At that time you only had to look at or to talk to him to realize how desperately ill he was, but every three months I had to go through this very painful review board process, and at a tremendous cost to the province. Each time there would be a new board, so each time I would have to sit there in front of a group of strangers and my very ill son and give personal evidence that would help have him recommitted so that he could get the help he needed and not hurt himself or someone else. I wonder if you realize how difficult it is to sit across the table from a very ill son and cause him more unnecessary pain when he has suffered so much.
During this time, when Fergus was visited by a patient advocate and asked for a review board and legal aid, he was represented by an individual who had been a patient advocate in a psychiatric hospital before he became a legal aid lawyer. At this hearing Fergus was visibly psychotic. He could not even remain at the hearing. He came in at the beginning and then he was brought back in at the end. This hearing lasted for five hours with no lunch. It began at 9:30 in the morning in a very draughty room. We broke at noon for about 10 or 15 minutes, but as there was only cold coffee, we continued.
Over three hours of that hearing was spent in a legal battle between the legal aid lawyer and the chair over legal technicalities that had absolutely nothing to do with my son's wellbeing. One such argument was that the former committal paper had run out at midnight and was not re-signed until some time that day, so therefore it was illegal.
My son's best interests were not the issue. Two psychiatrists, not one, had testified that Fergus met all three requirements of the law. Up to this time and through many review boards, when Fergus was asked by the committee, "If we let you out tomorrow, will you take your medication?" he would answer that he would not, even though he knew what that would mean. As a mother, you could not help but feel good and feel proud of him, but at the same time you could have cried for him too. You were just constantly being torn in two. But at this hearing the lawyer went out and spoke to him in the hall. Fergus came into the review board and said that he would take his medication, even though he had told me that morning that he would not and later on at the hospital that day said he would not. You felt so very sad that he had lied, because you knew this was what the system had done to him. The review board upheld that committal.
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As you know, if there is to be an appeal it has to be filed within two weeks of the decision. Two days before that time was up I got a call at school from the legal aid lawyer asking me for an extension as he wanted to launch an appeal. He began by saying in a very friendly little voice that this is what lawyers do for each other and that as I had equal-party status, "You know, if you want to be one of the boys or one of the club, you will do this for me," and that he had already talked to the ministry lawyer representing KPH and that she had agreed to do this. I told him that what he was doing was morally and ethically wrong and that if he just talked to Fergus or looked at him, he would know that what he was doing was wrong and that he did not have his best interests at heart. As his mother I had to do everything I could to stop him. Therefore, I would not grant him the extension.
The mood changed to if I did not do that, then he would haul me into court to have it extended, and the judge always did that anyway, and because I was causing it, he would ask that I pay the costs. Mind you, I have no legal experience and I was frightened. I did not know what the costs would be or if I would have to pay them, but I felt I had to persist because I had no alternative. He said I would be served that night at home.
By this time I was crying. I was in the staff room and this was witnessed by another staff member. I did not know what to do. I phoned the lawyer for the hospital and she said that she had not said whether she would grant it, but that as counsel for the hospital she could not act for me and could not give me any advice. I am a vice-principal in an elementary school in Lindsay, but I live in Peterborough.
I know this is going to sound like a grade B movie, but I want you to just try and put yourself in my shoes at that time and in my state of mind. I am driving down the highway and I am frantic, wondering what I can do. The thought came to me that maybe if I did not get served that night or the next day, he could not launch the appeal. I got to Peterborough at about 7 o'clock. I had had no dinner. I drove by my lawyer's office to see if he might be working. No such luck. I drove by a couple other lawyers' offices to see if any light was on there. No again.
Anyway, I decided, "I'm going to avoid the server tonight until I can get some legal advice." I drove up and down my street a couple of times to see if there was a car parked there with somebody in it waiting to serve me. I looked at the porch and I looked at the driveway. I saw no one, so I turned off the lights, drove in behind my house and sneaked up to the back door. I unlocked the door in the dark and crept in, leaving all the lights off. When I got in there my answering service light was on and it was the lawyer saying that he had decided not to appeal at that time. I can tell you, I collapsed into a chair and wept, but I did not rejoice because I knew he was just waiting for next time.
Again next time the patient advocate visited Fergus when his committal was to be renewed and again he asked for a review board. He was represented by the same legal aid. This hearing took a similar pattern to the last one. The committal was upheld but this time the decision was appealed to the district court. Fergus's condition had not improved at all; in fact, it was a little worse. I decided to represent myself with no legal experience, but my son went so often to review board that at the approximate cost I had been given of about $1,000 a day to have someone in Kingston represent me, I felt that if this was going to be a continuing pattern, I just could not afford counsel.
The lawyer's reasons, according to the act, had to be served within an allotted period of time. His were served several days late. I served what was called my factum within the allotted time of seven days. Again I received a call from the lawyer telling me he would not accept my factum and he wanted me to write another one. I had put in my factum that he had coerced my son into filing an appeal, which he had. I felt he was trying to get me to serve my factum late, as he had, so I refused. While I was dealing with this, Fergus threw himself in front of a van and tried to commit suicide. This was his third attempt. He was hospitalized with a broken pelvis and severe bruising.
Anyway, the lawyer took me to court to have my factum thrown out. I drove all the way to Kingston in winter weather, another day off work. The lawyer asked to speak to me in the hall and said it was really important. He took me down an empty hall. He started out friendly at first, saying he wanted me to agree to write another one because of what I had said about him and that it was not acceptable. I said I was willing to let the judge decide and to strike out anything that was not acceptable.
Next he changed the mood to a little angrier, saying he had a doctor's appointment that day and he could not proceed anyway and that I should feel sorry for him. I again stated that what he was doing was morally and ethically wrong in my opinion, he knew how bad Fergus was, he did not have his best interests at heart and I had to continue to do everything I could to stop him. He had absolutely no regard for my son's suicide attempt. He became angry at me again, started yelling at me that he would have it thrown out anyway and I would have to pay the costs. Believe me, I was frightened again. I did not know, but I felt I had to put up a brave front so he would not see how scared I was.
I jumped up and said, "I'll let the judge decide." We went in front of the judge and butter would not melt in his mouth. He apologized to the judge and said he could not proceed because my factum concerned him, his partner was ill and could not come. I protested that I had come so far and taken another day off. The judge apologized but said he had really no alternative, so the following week I had to return again. This judge agreed to go through my factum and strike out anything that was unacceptable. Of course this was only the preliminary. The appeal itself followed. Fergus's committal was sent back to another review board and the cycle started again.
Does this give this committee just any idea of what I have had to go through to try to do what is best for my son? Having a family member with severe paranoid schizophrenia is a tragedy in any family. All the family members suffer. That suffering should be enough. No mother should have to suffer the additional suffering that I went through with overzealous rights people. I firmly believe that if Fergus's family had not remained involved and still remain involved, he would be dead or perhaps have killed someone or both.
Your advocacy bill gives too much power to advocates with no accountability. Advocates will not know these people before they were ill. Families were there before, and God willing, if the system does not kill them, they will still be there. Your bill does nothing to help them remain involved. They should be encouraged to take part in review boards and in every decision made regarding their loved ones. You should be strengthening the family unit, not breaking it down. In your legislation, rights groups and survivor groups have a prominent place, but not us. I want to know why not. We are only incidentally mentioned. You allow survivor groups to speak for all mentally ill and they cannot, because they were never severely, chronically mentally ill and their experiences cannot be compared. Let them speak for their own group, all well and good. I am for that. But they cannot speak for all. They should not because they cannot. Only families can speak for the severely chronic, and they should have just as prominent a place in any legislation.
You have before you my recommendations. My greatest wish would be that you set this legislation aside and start over and put the money that public advocates will cost you into research. I believe Dr Philip Seemans said that research time could be cut in half if it had enough money. If you proceed with this legislation, families and friends of schizophrenics who represent families must have a prominent place in every step of the decision process. Advocates should have a certificate of proficiency to assure that they have an understanding of the disease. There has to be an accountability process. Definition of terms must be the same in all pieces of legislation so as not to leave them open to loopholes and different interpretations, and there has to be a process whereby seriously ill schizophrenics can get help immediately because of the crisis nature of this disease. It is a unique disease and you cannot release patients to the community without housing and support systems in place. At present, it is in an abysmal state. Thank you.
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The Chair: Thank you very much. Very briefly, Mr Curling.
Mr Curling: Mrs Young, you are a very courageous woman to share your story with us here. It was only for maybe half an hour, and I have just lived a life for half an hour and I am not quite sure if I could live it for an hour. You have been living it almost all of your son's life. We go back upstairs or somewhere and answer a phone and move on to the next issue, while you go home and deal with the issue itself. You have taken on a bureaucracy that is much more financed and equipped than you. You should say you are a strong woman because you are here today to tell that story. I just hope that all committee members, especially the government side, listened very attentively to what you have said.
I have one small disagreement with you. I would say there is a need for advocates and I am glad in your recommendations that you actually say that, but you said "with proper guidelines and proper structure." Most of these recommendations have been said to all governments, from the Conservatives to the Liberals and now the NDP government. There must be important things put in place, especially the last one. You must have formal support before you send people outside to be in the community after an institution. Some people feel that it does not cost money, but it costs lots of money to do so, so we must be very careful.
As you said that, as you were telling your story and reading the purpose of the act, it almost took on a different meaning. It says that the act is to contribute to the empowerment of the vulnerable person and all of a sudden, as you said, as they empower your son, who is empowering them, actually giving them enough ammunition for you to fight, to deal with the situation that you know best. It is this I think that the law, the legislation, should understand.
I may not ask you any question, but tell you that you share that with me. As I said, we all listened, and I hope the things you say will direct the government and the legal minds when they try to wrestle around different words for that one word of what happened, that could make it a nightmare for you for life and all for those.
I fully agree with you that empowerment should start with the love of the family, to empower that family, and sometimes many of the family would want to help those who are destitute or disillusioned in any way. If the family is there, those directions and the support is stronger there. If there is not such a family, then advocates are important, with guidelines.
Mrs Young: But you would agree the family first?
Mr Curling: The family first.
Mr J. Wilson: Mrs Young, I know it does not alleviate the suffering you go through as a family, but I cannot help but agree with almost everything you have said. I have a brother with schizophrenia. My mother is a schoolteacher, with red hair too. We have gone through over the last four years and are still going through exactly what you have outlined. You are right: We have allowed and our predecessors have allowed society to go rights-crazy to the point where you cannot really sort out who has the right to be what or do what. Now in our society it is so backwards you have the right to be wrong, you have the right to make the wrong decision on behalf of patients and people who suffer with paranoid schizophrenia. It is very sad and the problem we have in our caucus with this legislation is, we do not see that this in any way corrects it.
Mrs Young: No.
Mr J. Wilson: I will tell you that maybe your other son would want to be an MPP, because that is the only way I could get the rights-crazy people to stop harassing my family and coming between me and our loved ones. Not everyone is in that fortunate situation. They sure back off when you get elected to the Legislature.
Mr Sterling has a more technical point. I just want you to know that we do understand where you are coming from and we are going to work as hard as we can to try to change it.
Mrs Young: I think, if I may respond to that, right now in Peterborough we have a situation which seems such a dichotomy. We had a fellow who was working with CMHA, finding housing for schizophrenics. He befriended some of them and then he was let go by CMHA. So he was placarding CMHA for them. Then they used a government grant, I understand second hand, to hire him as a patient advocate and he is now going into the hospital and talking to schizophrenics, telling them they do not have to take their medication.
I was just at a meeting last week with Kelly Lynch, who is the head of the schizophrenic clinic in Peterborough, and she says she is having a difficult time trying to get some of her clients now to take their medication. Schizophrenics must have their medication. So here you have a government paying her to help the schizophrenics and the government paying this other fellow to tell them no. They are working against each other. It may sound funny, but it is awful.
Mr J. Wilson: Wait till they start suing each other. That gets to be quite interesting.
Mrs Young: I think this legislation, if it stays the way it is, will leave it open to a lot of that.
Mr Sterling: I have a great deal of problem with this advocacy bill with regard to schizophrenic patients. The Advocacy Commission is going to be partisan in nature. In other words, they are not going to lose the edge of being overzealous defenders of your son or any other schizophrenic patient. The board is going to be made up purposely of people who will have that bent. The groups that represent that community that is seeking the Advocacy Commission make no bones about it, that it is going to be partisan and that it is not going to be accountable. It is not even going to be accountable to me as a member of the Legislature, according to this legislation.
Mrs Young: I know.
Mr Sterling: It is going to be out there. They are going to set it adrift and it will be able to do as it pleases. It is a frightening prospect in terms of the accountability of the commission. There is nothing in the legislation which puts limitations on these people. These people are going to have all the benefits of being civil servants and the job security that goes with that. Therefore the prospect -- I hope there is a very small number -- of bad advocates is certainly there. I have a great deal of fear, particularly with schizophrenic patients, that this model is being used. I think it is totally inappropriate. It may be appropriate for some other kinds of situations, but I think it is totally inappropriate.
One of the advantages of Bill 108 is perhaps the prospect that people who care about schizophrenic patients will be able to become guardians for the personal care of the schizophrenic son or brother or whatever.
I would like to ask the legal counsel for the Ministry of Health what powers that guardian -- either court-appointed for the personal care or if the schizophrenic patient has a lucid moment and makes a power of attorney appointing the guardian; I know it is not in your case but it does happen in some cases where people are on medication -- has with respect to forcing a schizophrenic patient to take medication. Do they have any powers at all?
Ms Bentivegna: They would have the powers to make the treatment decisions once it had been established that the person was mentally incompetent. If that person went to the review board and the board upheld the finding of the health practitioner that the person was mentally incapable, then the treatment decision would be up to either the person named in the power of attorney or the other persons on the list. Yes, they would make the treatment decision.
Mr Sterling: With the other laws associated with holding a person within a hospital, a mental institution, will it be easier for our witness to have her son treated, if she can have him certified, if she can become the guardian?
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Ms Bentivegna: There are two different concepts. One is the Mental Health Act where the person is an involuntary patient because he is a danger to himself or to another, and then the separate issue of treatment. Now, what consent deals with, the Consent to Treatment Act, is the issue of treatment. It allows, as I said, once there is the finding of incapacity, if it is not contested or if it is confirmed the person is incapable, that the substitute can admit the person to a psychiatric facility or a hospital, if that person is not objecting. If he is objecting, under the Substitute Decisions Act only a guardian who has the power to admit or, under a validated power of attorney, has been given that power by the person to admit him, can admit him.
Mr Sterling: When the person is admitted, does the advocate come into the process at that point in time, or does the advocate come into the process during the appointment of the guardian?
Ms Bentivegna: The advocate comes in during the appointment or at the time of the finding of incapacity under the Consent to Treatment Act. That is when it would be done.
Mr Sterling: So that once you are past that step, you have the guardianship and you have the right to admit against the will of the schizophrenic patient, you call the police and you say: "I am the guardian. Here is my paper. I want my son in the hospital."
Ms Bentivegna: There is nothing in the act now that allows that step of calling the police. Under the Mental Health Act it is there, but under 109, the Consent to Treatment Act, or under Bill 108 there is not that authority to have the police pick someone up.
Mr Sterling: How do you get him in the hospital?
Ms Bentivegna: That is left open. It is not dealt with as to how you force someone to go.
Mr Winninger: The Mental Health Act so continues, the other parts of the Mental Health Act enabling a justice of the peace or the police to take a person to the hospital.
Ms Bentivegna: If that person is dangerous, but we have to keep the distinctions. The act allows you to admit the person but neither act deals with how you physically get him there.
Mr Sterling: Let's assume you get him there. The brothers or whatever help in terms of either coercing or whatever and they get him there. After having gone through this process, is the guardian in any better position than a mother would be under the present act?
Ms Bentivegna: The guardian can be the mother but, yes, the guardian would be because he or she would have the power to consent to treatment. That is the difference. It is not dealing with the fact of the involuntary committal, it is dealing with the treatment. If this person has been found incapable with respect to treatment, then it is the substitute who makes that decision. That is what the Consent to Treatment Act brings. That is not there right now necessarily; the admitting power is new.
Mr J. Wilson: But under the Mental Health Act it continues and a person can still sign himself out and you have to go through the review boards. Nothing of that syndrome has been changed, has it?
Ms Bentivegna: The consent to treatment rules under the Mental Health Act are repealed, and it is the Consent to Treatment Act that will apply. What stays in the Mental Health Act is the committal, the involuntary admission and those reviews. But any finding of incapacity with respect to treatment and the consent to treatment as such, whether the person is capable of consenting on his own behalf, if he is incapable then it is a substitute role in Bill 109, the Consent to Treatment Act.
Mr Sterling: If the guardian is saying "I consent to the treatment," which is basically contrary to what the schizophrenic patient wants, will the patient be treated?
Ms Bentivegna: If the patient is incapable, yes.
Mr J. Wilson: But also --
Mr Sterling: Against his will at that point in time?
Ms Bentivegna: Yes, because if the patient has been judged or found incapable to make that decision, that power is given to the guardian or the substitute.
Mr J. Wilson: How do you keep him in an institution?
Mr Sterling: Yes, how do you keep him in an institution?
Mr J. Wilson: So you can treat him?
Ms Bentivegna: As I said, there is no provision right now in the act. It allows you to admit them but there is nothing dealing with forcing people to stay in a certain place. Mr Fram seems to want to add something to that.
Mr Sterling: I think it is an important line of questioning to follow because I think that is specifically what you are concerned about.
Mr J. Wilson: We are not going far enough on this committee.
Mr Fram: If you look at section 56 and an order for guardianship, it provides that if an order for guardianship of the person is made and the court finds that the custodial authority is necessary, that is the authority to have custody over the person, subsection (3) allows the court to make a further order to apprehend the person. It says:
"If the guardian has custodial power over the person and the court is satisfied that it may be necessary to apprehend him or her, the court may in its order authorize the guardian to do so; in that case the guardian may, with the assistance of a police officer, enter the premises specified in the order, between 9 a.m. and 4 p.m. or during the hours specified in the order, and search for and remove the person, using such force as may be necessary."
So a special order can be obtained from the court to apprehend in those kinds of circumstances.
Mr Sterling: That is a special order; it does not go under the normal guardianship?
Mr Fram: No, it has to be established to the court's satisfaction that this extraordinary power to take into custody and to apprehend somebody is necessary.
Mr Sterling: Is that power there now? Is that changing anything?
Mr Fram: There is no power anywhere now, apart from the Mental Health Act, to make that kind of order.
Mr J. Wilson: But the Mental Health Act stays in effect, so do you still have to prove, in order to get the order, that they are a danger to themselves or others? What happens to that provision?
Mr Fram: No, the issue is not danger to themselves or others in an application for guardianship. Two things have to be established: that the person is incapable and that there is a need for authority of this kind.
Mr J. Wilson: Okay, but you have got us offtrack because we are looking at the administrative. You are saying that, according to section 56, if you are going for guardianship and you have to prove incapacity, the court may restrain the person to prove incapacity for the purposes of establishing guardianship. Is that right?
Mr Sterling: I think he is talking about two things. First of all, you have to go and get the guardianship. Is that correct, Mr Fram? You go and get the guardianship and then -- this is after the act is passed -- after you have got the guardianship you go back to court and you say, "I want to put my son in the hospital and this is the reason why I want to put him in the hospital." The judge makes an order that allows you. I guess it is another issue whether or not you get the police to execute the order, but let's say that the police comply. When you get him to the hospital, the guardian has the authority to admit, the authority to consent to treatment, and the patient is being kept basically against his wishes.
Mr Fram: Yes, but not in terms of the Mental Health Act as an involuntary patient.
Mr Sterling: Then it is indefinite how long you can keep him there? It is up to the guardian to make the call?
Mr Fram: It is up to the physicians as well.
Mr Sterling: Yes, but he does not have the protection of the Mental Health Act?
Mr Fram: He does not have the protection of an involuntary patient if they have accepted him as a voluntary patient on the order of the guardian.
The Chair: Thank you very much for the clarification. Mrs Carter.
Ms Carter: Mrs Young, as MPP for Peterborough, I would like to welcome you here particularly as my constituent. You have certainly had a great deal to bear and I certainly feel with you on that.
I am sorry you do not like the Advocacy Act because it is intended to help both vulnerable people and their families. Perhaps I could draw your attention to section 1(f) where it says, "to acknowledge, encourage and enhance individual, family and community support for the security and wellbeing of vulnerable persons."
I would also like to point out that the Advocacy Act does not actually create any new rights; it just makes sure that people are informed about what their rights are and provides the necessary resources, which are in fact the advocates, to help them obtain those rights.
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Mrs Young: To respond to that, in my experience and the experience of many others -- because I have been involved with families at the local level, also family meetings from the Kingston catchment area, which is a large area, and at the provincial level -- our experiences have been that advocates are more often adversarial to the family than with them.
So I would say theories are often fine but reality is another thing. Our realities and the realities of many others are that that is not the case. You are saying it gives no more rights, but rights people have a more prominent position than we do, and anyone would have to agree with that, reading the legislation. I think, if there is any hierarchical order, we should be there before them.
While we are speaking about this other thing, often when my son becomes very bad and it happens to be on a weekend, I do not know how you get a court order, I do not know how you get a judge. I have spent a whole half day just trying to get a justice of the peace. It has taken me a whole half day to try to get him in, and then he has got to convince the psychiatrist even to keep him.
You could go on and on, and I know I am going on and I do not mean to go over my time. It is just that I only told you --
The Chair: We are already there, but --
Ms Carter: As I say, I feel for you, and I know there are lots of people in Peterborough and everywhere else --
Mrs Young: I would just like you to take that into consideration.
Ms Carter: -- who are in a similar position, but I think we have to remember also that there are different degrees, as you said yourself, of the illness and maybe a different approach is appropriate in different circumstances.
Mrs Young: Schizophrenia is unique.
Mr Winninger: I would like to thank you. I am not unsympathetic to your position, because I too have a brother who is schizophrenic, but at the same time, I spent a good part of my legal practice representing psychiatric patients or representing the official guardian when the capacity to treatment was necessary.
We talked about the red herring of how you get people to the psychiatric facility when there is no guardianship order. Quite frankly, if the police find you are a danger or they suspect you are a danger to yourself or others or in danger of imminent and serious bodily harm, they take you there. Sometimes it is hard to get them to do that. Sometimes it is hard to persuade a justice of the peace to do that. But what I would like to suggest to you is that Bill 108 actually enhances your powers, and I would like to suggest why. A psychiatrist at the mental facility could decide that your son lacks capacity to consent to treatment.
Mrs Young: But I have to get him there.
Mr Winninger: But he does not know the nature of the treatment or he does not know the consequences of receiving the treatment or not receiving it. That is entirely dependent on the doctor making that finding of capacity. Only then, under the present legislation, under the Mental Health Act, can they go and look for substitute decision-makers for the purpose of treatment.
Our legislation, Bill 108, provides that you can apply to become a guardian for the personal care of your son. As Mr Fram has testified, once you have that guardianship order, you can then have your son admitted and you can request the treatment that you feel he needs. Unless he challenges your guardianship --
Mrs Young: Which he will.
Mr Winninger: -- that may the only way that he can get around it. Instead of your being entirely dependent on this psychiatrist, who may have second thoughts about finding your son lacking in capacity to consent to treatment, you have that protection there. So Bill 108 actually goes beyond the protections for you that are presently in the Mental Health Act.
Mrs Young: Even if Bill 108 said the family should be considered as guardian first, there is nothing in there that even says you will be guardian. You can apply --
Mr Winninger: It is in there, and there is a preference for family.
Mr Sterling: I am in the opposition, so I am not necessarily with him, but I do agree with him that under Bill 108 there are --
Mr Malkowski: On a point of order, Mr Chairman: I think it is important that we need to clarify, and Ms Spinks will clarify a point here.
The Chair: It is not a point of order but a point of clarification.
Ms Spinks: Mr Sterling referred to the accountability of the commission. The commission will be accountable. The commission is required under the Advocacy Act to report annually to the minister, who is required to file that report before the Legislature. Ultimately the government is responsible for all its agencies, boards and commissions, and the Advocacy Commission will be no different.
Mr Sterling: I have been here for 15 years, and I do not know about that. But I think what Mr Winninger is saying, and I think that what he is saying is correct, is that there appears to be more opportunity under Bill 108 for you to --
Mr Malkowski: On a point of order, Mr Chairman: We are not providing equal time. I think we have to provide equal time. We have already gone way over our time.
The Chair: Yes, we have, but because of the technical nature that we went through on this and the personal nature, I thought it was beneficial to the committee to listen to some of this.
Mr Sterling: I am trying to support the government side with regard to this thing.
The Chair: Mr Sterling, if you could be brief.
Mr J. Wilson: They do not even know when you are being helpful, Norm.
Mr Sterling: I give up.
Ms Akande: We recognize your support, Mr Sterling. One of the things I would like to know about is -- and I think counsel will probably be able to respond to this, and this is under 108 -- if the family has taken on guardianship and someone is admitted, is it necessary or is it always possible to have the review at regular intervals in spite of the assessment? I mean, why is it -- well, I have asked counsel.
The Chair: Briefly, please.
Mr Fram: The provisions of the Mental Health Act that apply to involuntary patients would not apply because the patient would be on the consent of the person who is there voluntarily. That is, the person is not there as an involuntary patient; that person need not be dangerous to himself or others within the test.
Ms Akande: Excuse me just a moment. If in fact the family has now acquired guardianship and has taken the child to the facility and has had it admitted -- so the person has not gone voluntarily; the family has had him committed -- is the review then as regular and as frequent? Is it every three months?
Mr Fram: No.
Ms Akande: What brings up the assessment?
Mr Fram: The way the question would be addressed is that an application to vary the guardianship order would be brought or a request to the public guardian and trustee's office would be brought, because the guardianship order might be inappropriately used. Those would be the checks on the system, and the advocate in the psychiatric facility would bring those matters to the attention of the person who, if he wanted to get out --
Ms Akande: Would that be initiated by the guardian?
Mr Fram: No. That would be initiated by the person who was in the facility.
Ms Akande: All right. Is that person motivated to do that or is it brought to his attention by the guardian? Does the guardian say, "I think it's appropriate that you should be bringing this action so that in fact this is not reviewed every three months"? We cannot get bogged down in paper.
Mr Fram: Right. No, the decision about treatment of a voluntary patient is between the person who is deciding, in this case the guardian, and the physician, so there is not any review. The person is in there, receives the treatment that the physician thinks is appropriate and that the guardian has approved. There would not be the review that is provided for involuntary patients, because technically the person would not be an involuntary patient.
Ms Akande: So that in fact it would be more supportive of the situation?
Mr Fram: It would be more supportive. It would be done not on the criteria of involuntary committal because of dangerousness; it would be there as a pure treatment decision done by the guardian.
Mr Poirier: I just wanted to see --
The Chair: Very quickly.
Mr Poirier: Yes, very quickly. Why does the system-maker have to get a lawyer and do this, repeat this every time, and why should it be a lawyer/cost type of process where somebody like Mrs Young would have to go get a lawyer and go in front of the legal system every time on a regular basis like this? Is that going to be eliminated?
Mr Fram: Assuming she got the guardianship order and assuming it was contested -- otherwise she probably would not need a lawyer to get the order; but she gets the order. The issue is quite an extraordinary power. She has now permitted her son to live in a group home. Under normal circumstances, things are going along. Now she wants to have her son apprehended. That is the triggering mechanism where somebody has to say there is a reason for this apprehension.
Mr Poirier: Okay. So what if the judge says there is a reason and gives her the right. She does not have to apply every three months to get that right. It is on an ongoing basis, right?
Mr Fram: That is right.
Mr Poirier: So this would relieve her nightmare.
Mr Fram: She could exercise the right. The person would be then apprehended and taken to the appropriate place, where she could consent to treatment. But what would happen is that, assuming the psychiatric facility was going to admit, her custodial power would allow her to have the person there for the purpose of treatment for as long as the treatment was necessary.
Mr Poirier: As determined by the medical authorities.
Mr Fram: And by the guardian.
Mr Poirier: Really? What if there was a difference? What if the medical authorities said he can go --
Mr Fram: The guardian cannot ask a doctor to do treatment that the doctor thinks is inappropriate.
Mr Poirier: Of course not.
Mr Fram: On the other hand, it is the guardian who makes treatment decisions in consultation with the physician.
Mr Sterling: Could I just ask --
The Chair: I think we are just going to keep getting into more "what ifs."
Mr Sterling: No.
The Chair: Unless you are very specific.
Mr Sterling: Okay. I will be very specific. Often with schizophrenic patients, when they get out in the community, they are not with their parents, their parents are not in the area, and I think a lot of people agree with the schizophrenic patients that if they continue to take their medication, then the disease will not return. There are lots of reasons why schizophrenic patients do not take it. There are side effects, it depresses some of them etc, and it is not in human nature to continue to take medicine when you are starting to feel better. Is there within the guardianship angle anything which would force a schizophrenic patient to go to Dr X in community Y to receive his or her medication on a daily basis? Can you do that kind of thing?
Mr Fram: A guardian can be given the authority to make treatment decisions, so yes, a guardian can be given custodial authority, the right to take the person somewhere, the right to decide where the person lives. Those powers can be conferred on the guardian.
Mr Sterling: So that in terms of saying to the patient, "If you do not show up and take your medicine, then --
Mr Fram: "Then we will come and get you."
The Chair: Mrs Young, on behalf of the committee, I would like to thank you and your son for his moral support in giving your presentation today.
The committee adjourned at 1704.