ONTARIO ASSOCIATION OF DEVELOPMENTAL SERVICE WORKERS
PSYCHIATRIC PATIENT ADVOCATE OFFICE
CITIZENS' COMMISSION ON HUMAN RIGHTS
HOSPITAL FOR SICK CHILDREN, DIVISION OF ADOLESCENT MEDICINE
CATHOLIC HEALTH ASSOCIATION OF ONTARIO
ONTARIO COALITION FOR ABORTION CLINICS
OTTAWA AD HOC COMMITTEE ON BILL 109
WILLIAM TUCKER
MICHAEL SCHWARTZ
CHARLES TATOR
CONTENTS
Tuesday 18 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 of Developmental Service Workers
George Anand, founding president
Jerry Monaghan, executive member
Psychiatric Patient Advocate Office
David Giuffrida, representative
Duff Waring, representative
Citizens' Commission on Human Rights
Wellington Dockery, representative
Bob Dobson-Smith, representative
Halina Cirillo, representative
Evelyn Schreiber
People First of Ontario
Norval Sears, president
Judith McGill, provincial adviser
Patrick Worth, representative
Easter Seal Society
Alan Dawson, representative
Hospital for Sick Children, division of adolescent medicine
Dr Miriam Kaufman, representative
Dr Eudice Goldberg, director
Dr Françoise Baylis, representative
Catholic Health Association of Ontario
Ron Marr, president
Sister Kateri Ghesquiere, board member
Daniel Faulkner, assistant executive director
Ontario Coalition for Abortion Clinics
Miriam Jones, member, coordinating committee
Sara Ballingall, member
Ottawa Ad Hoc Committee on Bill 109
Wendy Muckle, representative
Dr Kate Anderson, representative
William Tucker; Michael Schwartz; Charles Tator
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):
Cunningham, Dianne E. (London North/-Nord PC) for Mr Sterling
Curling, Alvin (Scarborough North/-Nord L) for Mr Sorbara
Harrington, Margaret H. (Niagara Falls ND) for Mr Fletcher
Also taking part / Autres participants et participantes:
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 0938 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 OF DEVELOPMENTAL SERVICE WORKERS
The Chair: I would like to welcome the first presenters, from the Ontario Association of Developmental Service Workers. Good morning. As soon as you are comfortable, could you please identify yourselves for the record and then proceed.
Mr Anand: I am George Anand, founding president of the Ontario Association of Developmental Service Workers. Beside me is Mr Jerry Monaghan, one of our executive members.
We are a very young association and we have been in existence for the last six years. Our members provide direct care service at the most personal and intimate level to the people who are developmentally handicapped. Our members come from the institutional setting and from the community setting and include those who are working in the educational area.
Since we have come in, some of the foremost concerns our members have expressed have been around the issue of personal care, around the issue of advocacy and around the issue of substitute decision-making, because our members were left in a state of limbo where they simply did not know where to turn when they had to make day-to-day decisions regarding personal care of the people they were working with.
The first major workshop we organized was in 1990. Subsequent to that, we organized another workshop in 1991 where we invited representatives from different consumer groups, and along with that, we invited representatives from the different ministries to come together and discuss what is needed around the issues of advocacy and substitute decision-making.
What we heard was that the present state is very chaotic. It is doing much disservice to the consumers, to the practitioners and to the people who are left to take day-to-day decisions regarding the personal care. We also realized that enough studies have already been done. The last thing we need is another study, another pilot project which is going to delay the process. What we need is that something should be instituted right away. Then after that system is in place, what we are recommending is to give it another three years and then come and look back at some of the overlapping areas and how you can streamline the system, how you can further tune the system.
What we have indicated in our submission are some of the issues or concerns that were expressed in our two major workshops, because we did hear from the representatives from the association of aging. They were very concerned with why the role of the public guardian should be incorporated into the public trustee's office. Maybe there is going to be a conflict there. We also talked about the different models, the kind of model that Alberta is working with and another model that Australia is working with. We looked at all those different models. So there were those kinds of concerns expressed. In view of those concerns, we are indicating those concerns in our recommendations so that maybe we can come back after a few years' time and see what those overlapping areas are that we are creating, and once we identify those overlapping areas, then look at it and see what kind of system it is possible to create which can streamline the process.
Another concern we heard was that it is going to impose quite a burden on families from the legalistic point of view. But again, we heard that under the present Charter of Rights and Freedoms maybe that is the only way to go about it. We still do not have much evidence to go with, one way or the other, so we felt that the best recommendation we can make is, let something be in place. That is what we need very badly. Let's go for it and then come back. Maybe a standing committee can come back and look at the whole issue again and streamline the process.
Furthermore, the direct care workers who have been providing the personal care to the people who are developmentally handicapped are the very people who know the residents, the clients they are working with, on the most personal and intimate basis. These are the people who know what kind of environments the people are faced with in their daily lives and what some of the personal care decisions are that they are capable of making in their daily lives and what particular kind of social context and environment is going to be the most congenial one to enable these so-called vulnerable people to make decisions.
First, we felt very strongly that we are the people who should be given some role in terms of assessing the functional capabilities of the so-called vulnerable people, because through their assessment then it can be judged whether they are capable of making certain decisions in their life area or not, or to what extent, or what kind of social context is going to be the most congenial one for them to make those decisions.
Second, we strongly advocated that our members who were working at the direct care level be seen as advocates, because these people are the ones providing 24-hour care. They are in a very good position to advocate on behalf of clients, provided there is no conflict of interest. We have our members working in different types of settings, so there is no need for there to be a conflict-of-interest kind of situation.
Our last recommendation is definitely to take into account the sociocultural aspirations of different ethnic groups so that any kind of diversities are fully incorporated into the Advocacy Commission itself.
Mr Chiarelli: Thank you very much, Mr Anand, for doing the research and preparation you have done. I am sure it is very helpful to all members of the committee. I gather, looking at your written submission and the comments you have made, that you are rather tentative or cautious about the legislation, so much so that you want a review after three years because there are elements of the legislation that you think may need review. There is uncertainty in parts of it in terms of how it would work in practice and you want a little bit of a safety valve or an insurance policy so that you can come back and take a quick look at this after three years.
You are not unlike a number of other people in the sense that they agree with the principle, the substance of the legislation, they agree with a lot of the particulars of the legislation, but they are a bit concerned about the process. As Dr Lowy has mentioned, he would like to see this legislation implemented, with some changes, as a pilot project. What you are saying is, "Give it a chance, but don't go too far down the road without reassessing it, because there are very serious concerns."
Another part of the process is simply to listen to the briefs and recommendations of people who come in here and simply make amendments that we in this committee think are appropriate.
So there are very serious process questions. I have been trying to wrestle with that process. Personally I feel that, based on the submissions that have come in, there are so many amendments which are being recommended that when it comes to clause-by-clause we will almost be rewriting the legislation and, in many respects, redesigning it. On the other hand, a number of people, such as yourself, have said: "Let's take a chance with it. We need something. Get it in now and we'll work the wrinkles out later."
Could you perhaps tell the committee a little more about your two workshops and share with us some of the groups or individuals who participated in your workshops? Are there any of their concerns you can share with us?
Mr Anand: The two workshops we have had, the organizations that attended, we have had a representative from the association of aging, a representative from the Ontario Association for Community Living, representatives from different parents' associations, and along with that, we invited the spokespersons from different ministries who have been working in terms of grappling with these three issues for a number of years: for example, Mr Steve Fram, Mr Hugh Paisley, Mr Willson McTavish and Mr Michael McHenry. We invited them, and what we intended to do was bring them under the same umbrella with different consumer groups and try to come up with different kinds of options. What other different models exist at this particular stage? What other issues are we still faced with? What has already been done, and what are some of the fears and apprehensions that are being expressed by different consumer groups?
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What we realized is that it does not matter what kind of solution we are going to be able to come up with or what kind of option we are going to come up with; it is not going to satisfy every party. There are always going to be certain fears and apprehensions that are going to be expressed by one side or the other side. It does not matter what kind of models you come up with.
Moreover, some of the fears and apprehensions that were expressed were, for example, about the whole legislation being too legalistic. Why can you not put all the three pieces of legislation into one bill? Why do you need all these three different hierarchies in three different ministries to administer the bill when all three bills are so complementary to each other? We grappled with those. Then of course there were pros -- just why do you need it?
Again, the kind of scenario we faced was that we did not have any kind of concrete evidence in front of us to say we should not go along with what is being recommended here. Then we looked at it.
The other option is to delay the process. Delaying the process is the last thing we felt anyone wanted. There have been years and years of study. There have been all kinds of advocacy groups and consumer groups clamouring to come up with some kind of solution to the dilemmas that families were facing, that consumers were facing and that practitioners were facing. The last thing, we felt, was to go for another study that is going to leave everyone in limbo, in the same status quo kind of situation.
Moreover, what we felt, and the fears and apprehension that were being expressed -- there was no hard evidence in front of us. We did not know whether we could substantiate those kinds of fears and apprehension that were expressed. There was no concrete evidence, although we did grapple with the different models that were suggested at different places. But there were always pros and cons to the different models.
Our foremost concern with this is that there is a big vacuum that exists right now. There is enough pain and suffering already there. We need a solution right now. Let's go with the solution and the intention of all these three pieces of legislation in terms of principle. I think everyone agreed with that. In our two major workshops everyone agreed with the basic principle, but it is how you are going to go about it in terms of the mechanism; there were differences around those areas. I guess our foremost concern was to have something in place and then come back.
Mr J. Wilson: Thank you, Mr Anand, for your presentation. I do have one quick question. It pertains to your second point, "The need to have one appeal process, making it non-legalistic, and timely to the extent possible under the Charter of Rights and Freedoms." What appeal process are you referring to there? What exactly do you mean?
Mr Anand: Again, I will go back to the workshops we have had. There is a certain appeal process under the consent to health treatment. What we are going to have is a particular board that is going to be set up under the Ministry of Health. Any kinds of decisions around the competency issue are going to be referred back to the board. That is on the health issue.
Then we have the personal care kind of issue. Any decisions of the families or anyone else who would like to dispute the personal care decisions under the guardianship plan where the public guardian's office is going to be involved, any kind of appeal is going to be done at a court level. Any kind of appeal process has to go to the court situation, the appeal against the public guardian's office that has to be instituted through a different appeal process.
Under the Advocacy Commission our understanding is that the advocate's role itself -- if there are any differences on a decision or on the way the advocates are functioning, then those decisions can be appealed directly to the court. What we are saying here is --
Mr J. Wilson: It is part 2 of your remarks.
Mr Anand: Then we look at the personal care issues and the health care issues. Sometimes there are grey areas, and sometimes there is so much overlapping of the personal care and the health care areas. But then we looked at those personal care situations, and they deal with very basic freedoms. Those freedoms are accorded under the Charter of Rights and Freedoms. If those freedoms have to be taken away, then they could only be taken away through the formal legal process of going to the courts.
Maybe there is no other way of going about it. That was one of the concerns expressed, that perhaps it is going to be too legalistic. On the other hand, we also grappled with certain statistics that came to us. One of the statistics that came to us was that there have been so few decisions appealed under the present mental health system that perhaps that will not pose a problem; perhaps it will not be that expensive or it will not be that legalistic.
Again, in our minds -- this was at a workshop -- I think what we grappled with was that we wished we could come up with a certain common appeal process. Maybe the same appeal board can adjudicate on the personal care issues and the health care issues, or maybe there are certain common questions around the way the advocates are performing or functioning. But we discussed some of the basic legal principles; we discussed all that. So that question was still hanging. That was still in the minds of the people in the workshops.
Mr Fletcher: What do you think about this committee process so far, coming in and giving presentations and making suggestions? Do you like this process? Is it a fair way of doing business?
Mr Anand: Yes.
Mr Fletcher: Do you feel rather insulted when you come here and you get asked a question about your workshops rather than what this bill is about?
Mr Chiarelli: That is a direct question.
Mr Fletcher: At least it is a question.
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Mr Anand: The reason we organized these workshops, first of all, is because there was concern among our own members that we were representing. The members, the direct care workers who have been working for years and years -- my colleague here has been working at personal care, direct care, for the last 25 or 26 years.
Mr Fletcher: I could have got that information over the phone from you, though. You did not have to come all this way to tell me that.
I agree with what you are saying about the review. I think a lot of government legislation should be reviewed, and that is a commendable suggestion. Again, I remember one witness saying this is legislation that will evolve and can grow, if we keep looking at it over the years. But, as you say, let's get it going. Let's get it in place and then let's start tinkering with it if it needs tinkering with. But let's start the system going so that the people who need the service get the service, and then we can start looking at where the holes are.
Yes, there may be holes in every piece of legislation. I do not think we can always be right on. Look at what we have been stuck with over the years from previous governments that should have been reviewed many times. So I agree with what you are saying. I am not sure about whether along these lines, but I agree there should be a review on the legislation.
Ms Carter: I just wanted to follow up two of the points you made. One of them is that ethnic diversity should be taken into account. If you look at the Advocacy Act, clause 7(1)(f) does say we want to "ensure that advocacy services are provided in a manner that takes into account the religion, culture and traditions of vulnerable persons." I just wondered whether that does not speak to your concerns there.
Mr Anand: It does in a way, but from our point of view we felt very strongly, because a number of times when we look at the formal advocacy groups that are set up there, what we find is something very rare is those ethnic advocacy groups. Maybe part of the blame lies with their not being able to organize themselves to be able to speak on behalf of their own ethnic communities, and because they are not able to organize themselves, they do not find much voice in the formal advocacy groups that are there.
Ms Carter: I assure you that is something we are trying very hard to address in this and in other fields. I hope that your concerns there will be unfounded.
Also, I feel the three acts are integrated. You say that they should under one ministry, but the Ministry of Citizenship does have the lead, so there is a focus. The acts have been drawn up with regard to each other. They do come as an integrated package, and here we are in committee dealing with them all simultaneously, so I think we are all very well aware of that need to keep all this legislation in focus at the same time.
Mr Anand: Yes, it is great. Again, I will go back to some of the questions we faced in the workshops we organized. Actually, we were faced with a model, one that exists in Australia right now. The impression we got is that in Australia they have a common board. It is the same board that provides the personal care and the health care. Then the same board provides the advocacy function too.
The advocates go and visit whenever there is a question, when certain advice is needed. Again, there were certain pros and cons to each situation and to this particular process. Again, the pros and cons are going to be in any kind of model you may be able to come up with.
The Chair: Mr Anand and Mr Monaghan, on behalf of the committee I would like to thank you for taking the time out of your busy schedules and coming to give us your presentation this morning.
PSYCHIATRIC PATIENT ADVOCATE OFFICE
The Chair: I will call forward the next presenters, from the Psychiatric Patient Advocate Office. As soon as you are comfortable, could you please identify yourselves for the record and then proceed.
Mr Giuffrida: My name is David Giuffrida. With me this morning is Duff Waring. We are making a presentation on behalf of the Psychiatric Patient Advocate Office of Ontario. I have been legal counsel to that program since 1986 and am now serving in the capacity of acting provincial coordinator. The committee will have heard about the role of the Advocacy Commission in, among other things, conducting systemic advocacy. Mr Waring has been the systemic policy adviser with our program at head office and is now serving in the capacity of acting legal counsel.
In the interests of time we will not be speaking to all the points raised in our brief. There is an executive summary at the beginning of the brief that may assist the committee to follow our presentation. Of course we are able to answer questions with respect to points we do not specifically raise.
Mr Waring: The Psychiatric Patient Advocate Office was the first province-wide advocacy program in psychiatric hospitals in this country. Our program works for the rights of patients in Ontario's 10 provincial psychiatric hospitals. We have been doing the kind of non-legal advocacy envisioned by Bill 74 for the past eight years. We believe Bill 74 is urgently needed legislation to assist people with disabilities to become empowered to secure their entitlements and to resist abuse.
Our office is also one of over 30 member organizations of the Ontario Advocacy Coalition. Apart from our position that the partial guardianship provisions should be kept in the Substitute Decisions Act, we agree with every recommendation in the coalition's brief to this committee.
We would like to emphasize the following issues on the basis of our experience. This committee may have heard of the large number of Ontarians who may meet the definition of "vulnerable people" and thus be potential clients of the commission. In our experience, only a fraction of our potential clients request our services. From 1990 to 1991 our advocates assisted 1,641 instructing clients out of a total patient population of 9,924. In short, only 16.5% of our potential clients request our services on an instructed basis. This committee ought to remember that advocates generally respond to the stated needs of their clients; they do not create them.
Another point we wish to emphasize concerns children in care. Bill 74 currently applies only to vulnerable people aged 16 or over. Our experience shows us that children in care also need advocates. In one hospital we responded to complaints that teenaged girls, at least one of whom said she was sexually abused at home, were stripped totally naked by male staff before being placed in a hospital gown and confined in a seclusion room. We conducted systemic advocacy in this case, which influenced a ministry decision to evaluate the ward and institute significant change.
Mr Giuffrida: I would like to address the issue of non-instructed advocacy. It has to be acknowledged that the cornerstone of advocacy as conducted by our program has been clients who are able to identify what their issues are and articulate them to the advocate. But it must also be acknowledged that some of the most vulnerable Ontarians are people who, perhaps because of mental disability, are unable to articulate any wish at all. None the less, they may be vulnerable to abuse and neglect.
For example, an elderly person may be tied in a geriatric chair in urine-soaked clothes, and because of staff shortages, may not be untied frequently enough and allowed to walk around the ward. As a result they may lose their power of ambulation. There are any number of issues we have been called upon to respond to where the client is not able to instruct us.
Another one concerns a man in his 90s with a pacemaker who was a victim of physical abuse by a young male nurse. The situation came to our attention and we worked hard to ensure that the family was notified, but we felt our hands were tied in pressing that the adult children of this patient be notified because of concerns that we not breach confidentiality.
It is important that when an advocate is possessed of information about abuse or neglect of a client who cannot instruct the advocate to share that information with third parties, the advocate not be at risk of running afoul of the large fine for breach of confidentiality contained in the act if he merely wants to share that information with appropriate responsible authorities.
It is also important in conducting non-instructed advocacy that the advocate have access to the relevant health care and other records pertaining to the client. As a rule with client-instructed advocacy, consent to those records will be only with the consent of the client. If the client instructs us, "Don't look at my file," we do not, because we respect the autonomy of our clients. But for our most vulnerable clients who cannot instruct us, we are really at a serious disadvantage if we do not have access to relevant information in the record with which we could argue about their situation.
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Another point I would like to address concerns the provision in the Advocacy Act that allows for a breach of confidentiality if the advocate believes on reasonable grounds that the client may be at risk of causing serious bodily harm to another person. This is contained in subsection 30(4). It has long been the practice and written policy of our program that advocates have the discretion to breach client confidentiality not only in that situation but also in the situation where the client appears suicidal or expresses to an advocate a wish to cause serious bodily harm to himself or herself, particularly where that risk may not already be known to the treatment team.
We do not argue lightly for breaches of client confidentiality. As will be noted in my next point about the Freedom of Information and Protection of Privacy Act, we take client confidentiality very seriously. We acknowledge, however, that there are some circumstances in which the value of having a confidential conversation with one's client must yield to other interests. We note that the philosophy behind the Consent to Treatment Act and the Substitute Decisions Act is that while there is a presumption of competence, there is such a thing as a person who lacks the capacity, for example, to balance his cheque book, and we are prepared to intervene and get assistance from a third party. We must also acknowledge that someone's decision to harm himself may be a lucid, rational decision such as Nancy B made. On the other hand, it may not be. If the advocate believes, on reasonable grounds, that the person's desire to harm himself may not be a rational choice, the advocate should not be forced to tell third parties but should at least have the opportunity to tell third parties.
The next point I want to address concerns the application of the Freedom of Information and Protection of Privacy Act. It is not currently mentioned in Bill 74, but it has been my understanding in the past that the government might be contemplating listing the commission as a scheduled agency to the freedom of information act. There are many sound policy reasons why the general information held by the commission should be available to taxpayers so they can have a look at what the budget and policies and procedures are of the commission.
However, our concern is that the freedom of information act applies to personal information contained in the commission. It has been our experience that the freedom of information act can be invoked by third parties who are not part of the advocate-client relationship not clients to ask our program to reveal to them the contents of advocate-client files. We have had 80 such requests so far, each one on identical photocopied forms filed by hospital staff wanting to look in our advocate-client files. We have resisted these so far. Four are under appeal. Given the competing interests that must be reconciled under the freedom of information act about access rights versus privacy, I cannot say with confidence now that the FOI act provides adequate protection to the confidentiality of advocate-client files.
There is such confidentiality provided in Bill 74 itself. There is a right of access to those files by the clients, as there should be. There does not also need to be a right of access potentially by third parties under the freedom of information act.
The next point I would like to make concerns Bill 108, the Substitute Decisions Act. As Mr Waring alluded to, my first point concerns the one area of our departure from the brief of the Ontario Advocacy Coalition. As I understand the reasoning of the majority of our coalition, by eliminating partial guardianship it would put the hard question to the judge: "Don't impose an order for partial guardianship; only make an order if you're satisfied the person is so incapable that you would make an order for global guardianship. You would determine they are globally incapable."
While I am sympathetic to their goal in ensuring that guardianship orders are only made as a matter of last resort so the state is minimally intrusive in the lives of vulnerable people, I do not believe this is an appropriate way to achieve that. The reality is that people are in fact capable in some areas of their lives and at times incapable in others. To repeal the sections providing for partial guardianship would introduce a fiction that if you are incapable in one area you are incapable in all of them. I do not believe there is a need for fictions in this legislation.
Finally, under Bill 108 we note there is a role for the public guardian and trustee to investigate allegations when a vulnerable, allegedly incapable person may be at serious risk of a compromise to his rights. There appears to be no corresponding investigative authority given to the PG and T. We believe that is an omission that ought to be rectified so that they have access to the allegedly incapable person and access to the records appropriate to the investigative role that is imposed on the PG and T.
Mr Waring: The final point we would like to emphasize concerns the consent to treatment legislation. This committee may have heard predictions of the large number of people who may resort to a review board to challenge a physician's determination of treatment and competence and thus delay treatment. In our experience in the 10 provincial psychiatric hospitals only 7% of admitted patients are determined to be incompetent to consent to their treatment. Of that percentage only 11% apply to the review board to challenge it. Of that 11% only 10% are successful. This suggests to us that the impact of the consent to treatment legislation in other health care settings will be equally small.
Mr Giuffrida: I should add before we take your questions that Mr Waring and I were able to hear some questions directed at previous witnesses this morning concerning proposed review of the legislation in the future. There is ample precedent for legislation being reviewed at some subsequent time. There was a three-year review of the freedom of information act, for example.
This is ground-breaking legislation dealing with important human issues. I am confident that if changes are needed in the future there will be an opportunity for those changes to be made. I note for example that there were major changes to the Mental Health Act in 1986 and 1987. It is not too many years after that that Bill 110, one of the bills you are dealing with, makes some changes to the Mental Health Act to fine-tune it. I am confident that can happen with this legislation as it can happen with any legislation.
Mr Chiarelli: Thank you very much for your brief. It was very technical and practical and certainly comes from a lot of very worthwhile experience. I want to read very quickly, regarding Bill 74, section 1, what the purposes of the act are.
"(a) to contribute to the empowerment of vulnerable persons and to promote respect for their rights, freedoms, autonomy and dignity;
"(b) to provide advocacy services to help vulnerable persons,
"(i) make their own decisions, exercise their rights, speak on their own behalf, engage in mutual aid and form organizations to advance their interests, and
"(ii) bring about structural changes at the political, legal, social, economic and institutional levels."
It appears to me that when you describe what your group has been involved in over the last number of years, that would properly describe what you have been doing. Is that correct?
Mr Giuffrida: Yes.
Mr Chiarelli: My next question is, what main functions or provisions of the Advocacy Act itself, Bill 74, will change or supplement or enhance what you are doing now? In other words, what are the pluses this act will do for you, having been in the field, having been fulfilling the purposes of this act as described, which has not yet been legislated?
Mr Giuffrida: There are significant portions of the act that extend access rights to the commission and its advocates that we have enjoyed in respect of patients in the 10 provincial psychiatric hospitals. We only function in those 10 hospitals. Since they are government-owned and -operated, the Minister of Health can and has administratively given us access to those hospitals, provided office space for us in those hospitals, and appointed us under section 5 of the Mental Health Act to give us access rights to clinical records in respect of our clients.
However, if we could not serve clients in other facilities or in the community under such an informal structure, access rights to clients and to their records need to be set out in statute. There is no statutory basis for our program now. I consider it an affirmation of what we do that the description of the role of the commission so closely parallels what I believe our organization does. But when you are designing a program on the scale of the commission, it is very appropriate to set the goals and values it is meant to reflect in the legislation.
Mr Chiarelli: But with respect to the boundaries of your activities at the present time, do you see this legislation significantly enhancing or empowering you to do more in the psychiatric hospitals?
Mr Giuffrida: It will achieve a number of things. Our program is currently a quasi-independent program of the Ministry of Health. I can report that the Ministry of Health, for as long as we have existed, has taken seriously and acted honourably in respect of honouring the independence of our program and our authority and freedom to speak to the media and to speak to committees such as yours. However, advocacy must not only be, but be seen to be, independent. One of the things that would be achieved by the existence of the commission is declaring that our program would eventually move under it and have the structural independence that is ultimately necessary for an advocacy program.
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Our access to client records is currently broader than the wording in the act contemplates, which is why I made the point about non-instructed advocacy. In respect of instructed advocacy, we get our clients' consent to look at their clinical records or we do not look at them. But we are also able, under our appointment under section 5 of the Mental Health Act, to look at the records of clients incapable of instructing us without their consent. We are concerned that this access right we now enjoy be continued under the Advocacy Act.
We are also concerned that there be amendments that, as I noted before, ensure that when an advocate is aware of abuse and neglect of a person who is incapable of instructing and needs to tell a third party, it be provided in the act. Currently we have difficulty with that. There is information right now that we would like to share with responsible agencies where we really feel, because of the freedom of information act for example, that we might be on shaky ground doing it.
Mr Chiarelli: Have you actually drafted amendments to the act which would satisfy your needs?
Mr Giuffrida: I believe some of them are addressed in the Ontario Advocacy Coalition's brief.
Mr Chiarelli: Are the sections actually drafted or are just the statements and the substance and the principle of the amendments recited?
Mr Giuffrida: The coalition's brief contains throughout it actual draft amendments.
Mr J. Wilson: Thank you for your presentation. I know a couple of weeks ago we had an opportunity to discuss this legislation. I am curious: Do you have assurances that your program will be incorporated into the Advocacy Commission, or are you kind of in limbo?
Mr Giuffrida: I do not believe we are in limbo. We are functioning as we have since 1983. There have been statements at various times by government indicating that intention, but I think ultimately that question should be directed to the government.
Mr J. Wilson: It certainly would make sense to me. You would prefer that route, obviously.
Mr Giuffrida: It is the appropriate evolution of our program.
Mr J. Wilson: Just another curious point. At the very beginning you said hospitals have requests in for your advocates' client files. I believe you said that.
Mr Giuffrida: Hospital staff members.
Mr J. Wilson: Why would they want those? Just fill me in on what would be going on there.
Mr Giuffrida: The standard request is one in which a hospital staff member files a personal information request to see any place on any shred of paper in our advocate offices in which his or her name might be mentioned. It obliges us by the strict wording of the request to search perhaps 1,200 files that might exist in our office since we opened in 1983. We note in our brief that the 80 requests represent 19% of all the requests filed for the entire Ministry of Health in a comparable period. Given the small size of our program, it really is a flood of requests. It is difficult not to characterize it as harassment, given the amount of time it takes to conduct the searches.
Since the requester is not obliged to state the reason for his or her request I can only speculate. Staff may be concerned that something has been said about them by a patient to an advocate. Indeed from time to time that can happen. But if a statement is made, let's say a complaint, by a patient to an advocate and recorded in the advocate-client file, that statement sitting in that file can cause no prejudice to the staff member at all. If the patient says, "In addition, I want you to report this staff member to his or her employer for the purposes of an investigation and perhaps discipline," at that point the information could be used to the prejudice of the employee. But at that point they can get it from their employer. As long as it is just between the advocate and client there is no legitimate need for a third party to see it.
The Chair: There are four colleagues on the government side who would like to speak. If we could be as brief as possible and as focused, it would be much appreciated.
Ms Carter: You have raised some very crucial points in your presentation, one of which is this whole question of non-instructed advocacy. As you know, Bill 74 at the moment is premised on the idea that advocates only act on the wishes of their clients. The other possibility of course is to do what you consider to be in somebody's best interests without his instructions. That is not allowed for in this act.
Once we depart from that or if we did depart from that, we get on a kind of slippery slope. You have mentioned examples where an advocate might see somebody in dire straits and you would need to report so that it could be put right. But there is a sliding scale, as it were, of issues where you are more and more deciding on behalf of the person, and there comes a point at which the question arises: Should you be referring to a guardian, or who is going to make these judgements? I just wondered if you could fill in a little bit more how you see that whole problem being resolved.
Mr Waring: Certainly. One point that has to be emphasized is that advocates in our program are not substitute decision-makers for their clients, regardless of their ability to instruct. No one is more aware of that slippery slope than we are because we have been doing non-instructed advocacy off and on for the past eight years. While we do not take the position that our advocates can make decisions on someone else's behalf, while we do not do best-interests determinations, we would like to be able to alert appropriate people when we detect very vulnerable people who are not able to ask for help, who are not able to instruct an advocate and ask for assistance. We would like to be able to point out to appropriate people when we find these patients in substandard conditions, when we find them in conditions of abuse and neglect.
Again, we have no authority to make decisions on their behalf, but we certainly feel we ought to be able to alert health care providers, family members, legally appointed guardians and other people in that person's life to get them to improve the conditions.
Mr Morrow: I want to thank you for that fine presentation. Once again this morning you have proven to me that the public hearing system works because you have made me think about something about FOI and I thank you for that. Would it make sense to include some sort of clause for FOI in these bills?
Mr Giuffrida: What we are recommending is a partial application of the freedom of information act to ensure the public's access to general information. I believe that cannot be achieved by anything but statutory means, either in the freedom of information act or in Bill 74. I do not have statutory language with me today, but I believe it would require an amendment to Bill 74.
Mr Morrow: Thank you very much.
Mr Winninger: A number of family members of current or former patients in mental facilities have come forward and suggested that the empowering role of the advocate might lead to conflict between the vulnerable individual and the family and moreover the advocate and the family. I just wondered, in your eight or nine years of experience with working with families of schizophrenics or other mental patients, what kind of role you might foresee under this legislation for the advocate vis-à-vis the family.
Mr Waring: There have been many cases over the past eight years where we worked with family members in order to resolve the complaints raised by their children who happen to be psychiatric patients. If we are acting on an instructed basis, none of us has any problem with working with family members if we are instructed to do so.
Mr Winninger: I see.
Mr Wessenger: I have a short question on subsection 10(7) of the Consent to Treatment Act. You suggest it is possible to modify this provision. I was wondering if you might elaborate on your suggestions in this regard.
Mr Giuffrida: We do not have with us today statutory language for that subsection either, but we have looked at various possibilities. It seems that the parameters one could work with in adjusting that section would have to do with the age of the patient, the degree of invasiveness of the proposed treatment and the kinds of rights advice that would be delivered. Need it always be face-to-face, onsite rights advice, for example? No one in our program, and I believe in the coalition, gets any comfort from the thought that a five-year-old could interfere with routine medical treatment. I would actually be surprised if that ended up being the interpretation and the application of that subsection, if it were passed into law exactly as it is worded. But we believe there is room to fine-tune that section just to ensure that needed medical treatment can be given to young children while still safeguarding the rights of people who are faced with invasive treatment.
Mr Wessenger: Fine. Thank you very much.
The Vice-Chair: I want to thank you for that very fine presentation and for taking time out of your busy day to come down and talk to us today.
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CITIZENS' COMMISSION ON HUMAN RIGHTS
The Vice-Chair: The next group up is the Citizens' Commission on Human Rights. Good morning and thank you for coming. Before you start, if you could say your names for the record and then begin when you are ready. Thank you very much.
Mr Dobson-Smith: Wellington Dockery, Bob Dobson-Smith and Halina Cirillo.
I am going to have Mr Dockery read a statement to you to begin. It is fairly brief. It is about three pages and double-spaced. It is four minutes or so, and it gives a position we take issue with.
Mr Dockery: "I, Wellington Dockery, of 295 Shuter Street, apartment 810, Toronto, Ontario, do state as follows:
"That on June 1, 1989, I arrived at my apartment and it had been padlocked shut by my landlord. I could not understand why, as my rent for the month of May had been fully paid on time.
"As it was about 2:30 am June 1, 1989, I pushed the door in and went into my bed.
"Later during the night I was awakened by the police, who then proceeded to take me to Queen Street Mental Health Centre without giving me any reason why. I at no time resisted in any way, but I could not understand why they took me.
"Upon arriving at Queen Street Mental Health Centre, I was asked by a psychiatrist if I wanted to be admitted. I stated that I did not want to be admitted.
"The psychiatrist admitted me anyway, even though he knew I did not want to be there. No information was given to me as to why I was there. He wanted me to sign some papers and I refused to do so.
"I was escorted by two security guards to unit 1, floor 1. This is one of the admitting units in the Queen Street Mental Health Centre.
"Upon arriving in unit 1, I was told by the nurse to undress and put on a pair of pyjamas. I complied with her order as I did not want to have the staff forcibly remove my clothing.
"On June 1, 1989, I was found to be mentally competent to manage my finances. This assessment was done by another psychiatrist.
"On June 2, 1989, I was placed on a certificate of involuntary admission by yet another psychiatrist.
"On June 2, 1989, I was not yet informed of any rights I had pertaining to my being kept in the hospital.
"I was then told I had to take some psychiatric drugs, which I refused. In 1990 I obtained my medical records by filing a form with the Queen Street Mental Health Centre, and in those records the psychiatrist states that if I refused my oral medication I was to be given intramuscular injections.
"The injections began on June 2, 1989, after I had refused to take the drugs orally and after I repeated that I did not want any drugs.
"I was held down by three attendants and a male nurse injected me in the buttocks. This forced treatment continued three times a day for one week. During this week I was kept in pyjamas against my will. I voiced that I wanted to leave.
"After a week of being brutally injected with drugs against my will I became physically overwhelmed by the continual forceful actions for refusing to take the oral medication and I eventually succumbed to orally taking the drugs, even though it was still against my will. By doing so, I wanted to at least stop the physical assault done to me on a routine basis.
"I was then transferred to unit 1, fourth floor, and I was held there without my consent, against my will, for another three weeks and then released.
"The adverse effects of these druggings left me with a partial inability to control my facial muscles and I could not speak properly for over six months. It has been over two years and I am now worried that some damage from this speech disability may be permanent. This impedes my ability to work as a car salesman."
I hereby state the above is true. I appreciate this opportunity to address this committee.
Mr Dobson-Smith: Mr Dockery's case is a very common case. We have several hundred of these cases currently. Our group, the Citizens' Commission on Human Rights, was established by the Church of Scientology in 1969. We have been involved for a couple of decades now and I have been in charge of it since 1972. During that time we have been involved in numerous submissions on an international basis regarding mental health law and its impact on consumers of psychiatric treatment. For example, many of the recommendations of the Daes report to the United Nations were from our international office.
We know there are three separate bills before this committee. We are mainly concerned with the consent to treatment legislation. We feel that the consent to treatment legislation is the basis on which the person and his decision-makers have access to view their position. The previous Mental Health Act of Ontario proclaimed into law in December 1987 guaranteed informed consent to psychiatric patients. Basically it just simply said "informed consent," which was never defined. It is currently abused, as we know with Mr Dockery's case. It has been five years since that legislation took place and it still occurs on a regular basis.
We have cases that as of three weeks ago told us they had never received any informed consent. They are on things like Prozac. After a week and a half on Prozac they attempted suicide. They did not know why. They had never been to a psychiatrist before in their lives. This is the kind of stuff we are dealing with. No one is viewing these medications; no one is viewing the subject of these medications. They are looked upon as a pill. Pills are sort of okay in this society. They are on TV. It is a very subtle, blunt blow to the head.
I am attempting to arrange a speech therapist for Mr Dockery today. His condition could be caused by a baseball bat over the head, except that when medication does this over a period of time you cannot see any bruises.
We have uncovered hundreds of cases of not only lack of informed consent but actual forced psychiatric treatment. In our experience, forced psychiatric treatment takes place when a patient refuses the medication or procedure and hospital staff and psychiatrists feel it should be given, regardless of patient refusal.
Peter Breggin has been involved in this since 1962, when he graduated from psychiatry at Harvard University. He is head of a group in Washington called the Centre for the Study of Psychiatry right now. His contention is that these pharmaceuticals are used to make patients submit so that they are easily managed within a facility. That is basically the only reason they are given these.
Dr Heinz Lehman, a world-renowned Canadian psychiatrist who did the original research on the drug chlorpromazine, which was used in every single psychiatric hospital in this country, has this to say about it in his research, and it is used on people without giving them any information on it whatsoever:
"Many patients dislike the `empty feeling' resulting from the reduction of drive and spontaneity, which is apparently one of the most characteristic effects of this substance."
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He also speaks of lassitude and compares the effects to lobotomy.
"In the management of pain in terminal cancer patients, chlorpromazine may prove to be a pharmacological substitute for lobotomy."
Yet this major tranquillizer has been broadly prescribed throughout the entire mental health system of Ontario and Canada.
Dr VanPutten, another researcher who has done extensive research on drugs, talks about haloperidol and chlorpromazine, which are the two most broadly used psychiatric drugs in facilities like our public mental hospitals. People had "exaggerated feelings of depression and unrest without any apparent cause" and there were "depressions, anxiety, ideas of guilt and suicidal ideas" in 61% of those people in the study; 41% were considered serious and followed a discernible pattern. They complained that the treatment was making them worse and that they had been much better before they had any treatment. They repeatedly demanded attention or a discontinuation of treatment.
Our contention is that major tranquillizers are used for management purposes in psychiatric hospitals and that a person must have the same informed consent for this, which we will outline here, as if he was going to undergo a heart transplant or brain surgery or anything else. The results can be disastrous and the same.
The consent must be written, informed consent that provides the competent patient, or his decision-maker if he is incompetent, with all the positive and negative aspects of all medication or procedures. For a patient to be competent, and this is what is missed -- psychiatry itself, I think we can all agree, is an inexact science at the very least. With the pharmaceutical substances that it uses, it can actually be dangerous. Prior to any psychiatric treatment, to be competent to consent the patient must fully understand not only the nature of his treatment -- no one in this room could be competent to consent to any psychiatric treatment unless he understood the nature of the treatment and the nature of his illness. The psychiatrically defined symptoms that could be called schizophrenia, a nervous condition, some kinds of disorders etc could also be the result of a broken back, cracked ribs, something wrong with the central nervous system, a disease, anorexia, a blood infection or any of these many different things; there are numerous things. We want to see a complete medical examination done before any psychiatric treatment takes place to ensure that the person is not suffering from a physically treatable disorder or condition.
We believe no one can be competent without understanding the treatment and the illness. As well, the patient should first receive a full medical examination to ensure that the psychiatrically defined symptoms are not caused by a medically treatable illness or disease.
I have gone into a consent form here that is fairly lengthy and you can look through it. It goes into the reason for the treatment, the nature of the procedures to be used, the probable degree and duration of improvement or remission, the nature, degree, duration and probability of side-effects, significant risks etc. It goes into that in detail. This copy of the consent form is currently in use in California. It has been now for 14 years, since 1978 or 1976, I think. It is called the Vasconcellos bill. It is Bill 1039, state of California. It is the informed consent law. Basically it constitutes informed consent.
The reason we want to have written informed consent is because one psychiatrist or one practitioner will give a person a certain amount of information -- it may be significant and it may not be -- and another one, as in the case of Mr Dockery, might provide no information at all -- nothing about the adverse reactions, nothing about anything that can take place.
We want to see a standard level of information provided, or else it is not fully informed consent. If you look through the actual precautions and things in the compendium of pharmaceuticals on these substances, these things should be printed in lay terms for a person. When he looks at this and says, "You're going to give me a pill; what is it?" and is told, "It'll make you feel better," that is no good. It is no good when that happens. This is the complication, and it happens in hundreds and thousands of cases. They have a tardive dyskinesia clinic at Queen Street to handle this. After they drug the guy for five years, they then send him to the tardive dyskinesia clinic downstairs for a lifetime of rehabilitation. It is completely unbelievable.
It should be the function of the advocate to consult with the person or the substitute decision-maker. The physician may go through the consent form with the patient or his guardian if requested to do so by the patient or the substitute decision-maker.
After his medical examination results are in, there has to be a 48-hour lapse for this person to absorb the information on the sheet and discuss it with his family. This quick-fix treatment where he comes in, goes on to the ward, the bell rings and medication calls occur is quite unacceptable as far as an informed consent regulation goes.
I had a case in Hamilton who contacted me. She was in the hospital there. She said she did not want any medication. They come around, they ring the bell, they give her the medication. If she does not take it she gets injected, so she takes it. She holds out her arm. This is implied consent. She says: "I'm going to go now. I feel better. Thank you very much for letting me stay here. I'd like to go now." So she goes home, and then a nurse comes to give her the medication once a week. She says, "I don't want the medication any more." The police come to pick her up and bring her back to the Hamilton Psychiatric Hospital. This is not a political prisoner in a communist country.
The legislation that exists on informed consent is so inept, is so lacking in any direction, that there must be a firm outline, firm guidelines taken on it so that it can be defined and applied. Informed consent cannot be, "Well, it's going to make you feel better." That is no good.
I have also outlined here a complete medical examination. We have medical doctor advisers on our commission who have told us what would virtually diagnose everything. The main thing is a complete and thorough medical examination beginning when the guy goes into the hospital. This would include urinalysis and blood tests. There is a study that was done in Texas. We have never done a study here. It would be very interesting to have this committee recommend that one be done. They took 100 patients lined up at a hospital in Austin, Texas, who were readmissions to a psychiatric hospital; 87% of them had serious physical illnesses; 50% of those had illnesses like cancer that were undiagnosed, a cracked spine that had never been X-rayed and never been looked at, cracked ribs, heart conditions, thyroid conditions, food allergies, incredible skin conditions, dermatological conditions, things like this that were exacerbating the mental condition and were never even looked at. All they would do is pass out medication. That is what they did. That was their job.
We want to see this looked upon in this way. It may not be as bad as down there; I do not think so. I do not know if I am the only person, but I am probably one of the few people who have been to every single psychiatric hospital in Canada, from Newfoundland to British Columbia, in the last 20 years. I have seen just about every possible circumstance. Ontario does very nicely, thank you very much. We have nice settings and things.
The nutrition in food, though, is another curious area of contention. I had one case in a hospital who was in Penetang, who had never committed a crime, who was there because he was hard to handle in another institution. The doctor I brought in to do tests on him, nutritional tests, discovered that his diet consisted of six cups of sugar per day. His teeth were rotted out of his head. His diet consisted of two hot dogs, about eight Coca-Colas, a couple of O'Henry chocolate bars and some potato chips. This is what he was given every day. You cannot give somebody this every day and think he is going to get better.
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I am now going to go into the specific areas of the legislation. There is one last point I want to bring up here. These things are all covered in our brief, which I hope you will have a chance to read. This involves forced treatment and access to the criminal justice system by psychiatric patients. We do not want civil proceedings. I have cases that have consumed three and a half or four years in examinations for discovery. We contend there is no contest between the 200 names on the left-hand side of the doctors' malpractice insurance company lawyers and our legal aid attorney. They have been in court for five years. The legal fees after two years from legal aid were $88,000.
You could have the guy threatening anything in writing in the patient's file and it would hardly be looked at. We want these people to have access to the criminal justice system. It is very simple. They go see a justice of the peace. They say: "This guy assaulted me. He held me down. He injected me. I did not have informed consent even though I was competent." There is no certificate of incompetency in any of his medical records, in any of our cases' medical records; I have them all. If they are incompetent, certify them incompetent so that they can then have the legal framework that is in place come to them and take action. If they are not certified incompetent, they are vulnerable to intimidation, as was Mr Dockery.
The basic thing is that we want to see a strong signal sent out to these facilities that they have to provide informed written consent, they have to acknowledge the fact they cannot just drug someone and do this, they cannot hold someone down who does not want to be treated and do this, and that they should be able to go to a justice of the peace and file criminal assault charges. When we went to the justice of the peace, the justice of the peace said: "You shouldn't have gone to the psychiatric hospital. I don't see intent here. I think the doctor was really trying to help you."
This is how it works, and it is an impossibility for these people and for me. I have been there 100 times. I have 600 informations filed. Three of them had process issued. When all three got to court, all were systematically dropped by the crown attorney. In one case the defence attorney went to the crown attorney, had a little chat and a coffee. "Hi, Doris." "Hi, Mary. How are you today?" "Look, you know that thing? It's ridiculous." She went into court and said, "I'm not going to be pursuing this," without even discussing it with the plaintiff. It was just dropped.
The point is that we want to see criminal action available to these people. They are not equal. Under the Constitution they are not equal. The centre of criminology at the University of Toronto filed a report on justices of the peace, an extensive report, the first one that has ever been done, as far as I know. I have a copy of it. I am sure you could gain access to a copy of it and could go through that and see how mental patients, psychiatric patients, are discriminated against by justices of the peace. We have had them throw -- I will not repeat what they have said to us, but it is like four-letter words etc: "Get out. I don't deal with mental patients."
I will now go into the aspects of the legislation we are concerned about.
The Vice-Chair: Just one moment, if you would not mind. You might want to be reminded that the members here might have questions to ask.
Mr Dobson-Smith: Oh, I did not know that. Okay, anybody have any questions?
The Vice-Chair: I am sorry. What I was saying was, if you would like to sum up so they can ask questions, it would be appreciated.
Mr Dobson-Smith: Okay. I think the most significant aspect of protection is what is actually the position. The position is that we have people walking into a subject matter in psychiatric facilities. Our group is mainly concerned with psychiatric inpatients and outpatients. This is whom we deal with. There are other vulnerable groups and there are groups that handle those. We specifically deal with these.
The point is that psychiatry is an inexact science. Five thousand studies have been done on the origins of schizophrenia. A research study on all those 5,000 studies explains that because of the broad direction taken no progress has been made. Another study on the generality of mental illness virtually confirms the same thing: "There is no rigorous knowledge of the cause, cure or even the symptoms of functional mental disorders. Such knowledge as there is, is clinical and intuitive and thus not subject to verification by scientific methods." These people are going in there, taking somebody's intuitive medication and being impeded or disabled by it for the rest of their life, becoming an actual budget drain on the health care system.
We want them to be informed before this medication is offered. We want the complete medical examination. We want full written informed consent. When these people want to lay charges of assault against someone, there is no consent form in their medical record -- we find no consent forms -- and they are still dropped. We want it said that it is -- you know the words, I guess, to put in here -- a criminal act to forcibly treat a psychiatric patient or a vulnerable person against his will without the decision-maker if he is incompetent or without the person if he is competent.
We have made provision for emergencies. We have not eliminated that. We are not talking about when a guy comes into a psychiatric hospital and is flailing his arms and needs to be restrained and things like that; we are talking about the other 95% or 99% of what happens.
With regard to psychosurgery and electroconvulsive therapy I can only say that I did the most extensive research. I had approximately 12 investigators digging up psychosurgical cases in Canada. I personally received information from the Ministry of Health in 1975 in British Columbia, from the British Columbia health insurance plan, that no psychosurgery occurred. Upon going to the BC hospital insurance, I asked the lady to give me the records on psychosurgery. They gave me the lists of the kinds of operations that were done. One hundred and fifty have been done in the last six months. Some of them were transferred back and forth from hospitals here in Toronto.
This is one very high-level researcher's summation of what psychosurgery is: "Psychosurgery is completely experimental. It has no place in any kind of treatment methodology." He says, "The patient successfully committed suicide and the physician involved then considered the surgery a success due to the fact that this patient would never have been able to bring himself to suicide prior to the surgery." Ha, ha, ha. Terrific.
Does anyone have any questions or anything?
Mr Poirier: We could listen to you for days on end and you could talk to us for days on end, but I guess somebody did not tell you or remind you you had half an hour for all of us for your statement and our questions. Suffice it to say --
Mr Dobson-Smith: Yes, we have about seven minutes, I guess.
Mr Poirier: Fair enough. What you advance is extremely disturbing, very disconcerting, and I can only hope that through our work in the committee we can come out with a bill that will address these issues. I am sure that since you have been dealing with this for 20 years we have not even touched the surface of all the cases you have seen and have scientifically documented throughout your research. It is very disconcerting that things like that are still happening in 1992. This is one of the reasons I strongly support the principle, but I also want to make sure that when the bill comes out there will be no loopholes so these types of things do not happen any more, so you can be satisfied that you do not have to deal with new cases and just have to catch up with the previous cases.
Mr Dobson-Smith: I would love to. You know, I do not get paid for this. It takes a lot of time.
Mr Poirier: Being a former translator, with all that you had to say, too bad you are not paid by the word. You would have made a fortune by now. But I am glad you have gone forward. I am sure you would have a lot of background material if legal counsel or the government members want it, but we will do our best, our party anyway, to make sure we can close as many of the loopholes that are still there. I want to thank you for bringing that forward.
I have a lot of things to say to you too, but in the interest of the 5.36 minutes that are left, I will let other caucuses and other people have a chance to talk also. Thank you.
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Mr Winninger: I think a good case can be made on the basis of the evidence you have brought forward today that criminal sanctions or quasi-criminal sanctions could be beefed up to discourage the kind of violations of the safeguards under the Mental Health Act you have described. I am just wondering whether your organization or an individual has taken any civil actions for battery or false imprisonment or assault --
Mr Dobson-Smith: We have implemented those in the last six months. We have to, because if we cannot do anything criminally, we want some redress.
Mr Winninger: -- or a violation of charter rights.
Mr Dobson-Smith: Yes. It is very hard. The other thing is legal aid. Legal aid has been wonderful to us; do not get me wrong. They have been really good. We go down and we talk to them. We explain the situation and they just cannot believe it: "Why do we have informed consent? You know, we have informed consent. Why are you guys doing this?"
The point is that with an informed consent regulation all this stuff would stop, and not only would it protect the patient, it would protect the psychiatrist because there would be a standard level of information. A standard level of information is the only way you can actually provide everyone with equal opportunity to consent, because one doctor could have a bias towards something and another could have another bias. He can go through the written consent form with the patient, but then the patient has all the information there. His family is there. They can review it, they can think about it.
Mr Winninger: I infer from your comments then that you do see an important role for the advocate in assisting vulnerable patients with their legal rights, legal recourse.
Mr Dobson-Smith: Yes. That is another grave concern that I have. A lot of our cases did not even know there was an advocate. They did not know there was a Psychiatric Patient Advocate Office and they did not know whom they could turn to. We have had patients who have had the guy grab them and say, "If you go to the advocate you're really in trouble with us, you know," this kind of thing. They tell us this, but there are no records of any of these things.
The thing that really bothered me the most was actually the fact that it is right in the medical records that if the patient refuses, force the treatment; intramuscular injection, regardless of the fact that he is mentally competent. You people are all familiar with the fact that if a person is involuntary, it does not mean that he is mentally incompetent. I am sure you know that; the guy is still competent. He has to be certified incompetent or he has to be incompetent to consent to treatment. We feel that everyone is incompetent to consent to treatment; you would be and so would I, if I were subjecting myself to this, because I would not know that the reason I was being given this medication was addressing any problem that is causing me to have these symptoms that he is defining.
This is the whole basic crux of the matter, and a lot of the work of an advocate's office, which is obviously going to have to be beefed up with money and people on a pretty grand scale to handle all this stuff, would eliminate a lot of this unknowingness. It is hard to initially put into administration, but once it was going, they found it extremely workable in California. Suits have dropped; it is just not the same as it used to be.
Mr Curling: I just want to make a comment that, first, these bills are quite emotional bills and we are dealing with people's lives. Sometimes when we hear that story we are quick to move to make decisions that, I dare say, are unbalanced. We have to take into consideration that we said, "Sure we need an advocate; we have to make sure that the advocate is accountable and the person is responsible."
We do not want this government to move in and say, "We are the Big Brothers; we will take over." Everybody is vulnerable and we have to balance the doctors, the psychiatrists -- all those who are involved -- the advocates, the people who are giving the consent to treatment. Therefore, as I say, we go along.
Your input here is extremely important, but in the meantime we cannot completely discredit the psychiatrists or the doctors. I know you are not saying that, so we want to emphasize that we are here, as the opposition, if you want to call us that, to remind the government that it is not the Big Brothers to do all that, but we have to make sure that balance happens. That is why I welcome your contribution.
I saw in your presentation here when you talk about the medical side of it and the psychiatric side of it that the advocates must be responsible, accountable and must be people who can carry out their duty for the betterment of mankind.
The Chair: On behalf of the committee, I would like to thank you for taking the time out of your busy schedules to come and appear before this committee this morning.
Mr Dobson-Smith: Thanks a lot. I hope you all read this.
EVELYN SCHREIBER
The Chair: I would like to call forward our next presenter, Evelyn Schreiber.
Mr Poirier: It might be a good idea that even though the people who are coming forward have been told they have half an hour, each one should be reminded by you, sir, respectfully, that they have half an hour, to take 15 minutes and also allow, at best, 15 minutes for questions. I think maybe some people are nervous, as Bob mentioned. I was not aware of that. I do not know why they are nervous with us but they are perceived to be nervous with us, and it would be greatly appreciated if you would remind each group of that.
The Chair: I would remind you that we are one of the gentlest committees standing right at the moment.
Good morning. As soon as you are comfortable, could you please identify yourself for the record and then proceed. We will allow you the half-hour. We would like 15 minutes for your presentation and at least 15 minutes for questions and answers.
Ms Schreiber: I am Evelyn Schreiber from Sault Ste Marie. I have had two children diagnosed with mental illness. One is deceased and one is in hospital at this time. I would like to ask the committee if it is all right that I have my daughter here with me for support.
The Chair: Of course.
Ms Schreiber: My son, Neil Douglas Schreiber, was diagnosed as having schizophrenia in January 1984 at the age of 16. My daughter -- this daughter right here -- took him to Toronto from the Sault, as he was refused admission in Sault Ste Marie. He was very psychotic, became very aggressive and hardly slept. One of his delusions was that he thought we were all plotting against him, and none of us could talk on the phone or go outside. It was almost like being held hostage.
My daughters finally were able to call the police and he was admitted to hospital. He was put on medication and seemed to respond a bit. He was released after three to four weeks and he overdosed on his medication. I had him back in hospital again, and while he was there that time, an advocate came and told him that he had the right to refuse medication and he did not need to be in the hospital if he did not want to be.
From that time until he died, June 2, 1991, he never stayed on his medication as he should have. He would spend sometimes two months in jail in solitary confinement, and he was in hospital about 90 times for periods of one to two weeks and a few times maybe for one to two months on and off medication -- very long periods without medication.
I am having a very difficult time. Please excuse me.
He stayed with me in my home from 1985 to February 1988. Due to his sporadic use of medications and his drug and alcohol abuse I could no longer have him live with me as he was verbally and physically abusive towards me. I was also taking care of his disability pension money, his living accommodation, his rent, his food, washing his clothes and cleaning his place and things like that, trying to keep him on medication at the same time and see that he got hospitalization whenever he was very ill, which was most of the time.
He would break into my home by smashing in either the doors or the windows. In his psychotic state he would come in, throw my furniture around, punch holes in my walls. It did not matter what time it was, whether it was 2 or 3 o'clock in the morning; he would come to my place and demand money, whatever he thought he needed at that time. He threatened to kill me, those kinds of things.
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The Chair: Ms Schreiber, would you appreciate it if we recessed for a minute?
Ms Schreiber: No, this is fine. I have to keep going. I just want to wipe my eyes so I can read.
There were many times that I had to call the police and lay assault charges against him. I would have to go to court and testify against him. He would be jailed, put in solitary confinement because he was not, as they put it, fit to be in with the other inmates due to his psychosis, his mental illness. He had been in jail at least 90 times in that period, from the onset of his illness until he died.
At times when I had to lay charges against him and, hopefully, get him the psychiatric care he needed, the Mental Health Act is so delicate that the police or family doctors would say, "Oh, we can't do that because we're afraid we'll be sued because of the way the Mental Health Act reads." He had to be a danger to me and a danger to himself. He was a danger to me many times and a danger to himself many times, as he was also very suicidal.
In one incident -- there were many of them -- on August 8, 1986, he was discharged from a penal institution with a one-way ticket to Toronto. Why Toronto, I do not know, because we live in Sault Ste Marie. This was on his 19th birthday. We did not know where he had gone or what had happened to him. I went to the police and reported him as a missing person. No one knew where he was.
On September 29, 1986, I had a call from a hospital in Montreal. The police had pulled him out of a river, as he had jumped off a bridge there during his psychosis or delusions, whatever. He came back to Sault Ste Marie. Before he got back to Sault Ste Marie he had been put in jail a few times for doing bizarre things on the streets, maybe ordering food and running out of the restaurant and not paying for it or just being plain crazy.
His life and our lives were nightmares. I cannot begin to imagine his agony. Sometimes when he would be a bit stabilized on medication he would say to me: "Mom, whenever you see me getting crazy, please leave as fast as you can, because I can't stop myself and I don't want to hurt you. I don't want to kill you." He would say, "I'm afraid some day I might."
He would be evicted from living accommodations that I would find for him because when he was psychotic he would smash walls or throw his furniture around or scream at whatever was going on in his head in his delusions. He smashed his guitars.
The very last, very bad episode we had with him while he was alive was at Christmas 1990. He was very aggressive and was in and out of being psychotic. We were opening our gifts on Christmas Eve and he could not sit still. He was running back and forth and he was just very aggressive. He just said, "Give me my presents and let me go," and of course swear words, "I will da-da-da out of here and you can da-da-da do what you want." He was very verbally abusive and became physically abusive towards my daughter. She ran out the back door and he left. But about 15 to 20 minutes later he came back. I answered the door and I said, "Neil, I can't let you in unless you're going to behave." His hands were full of blood. He said, "I've come here to kill you." He tried to hit me, or he did hit me, as I ran underneath his arm to get out. I ran out on to the street, stood in the middle of the street and stopped a car. The people let me in the car after they understood what was going on, that I was in danger.
They took me to a nearby home and called the police. I watched him from there. He went into my house, into my home. The police came and took him to the hospital, because his hands were all cut up from glass, and then to jail. My Christmas tree, television, some furniture, plants, everything lay in a pile in the middle of my living room. A lot of things were smashed.
That night for some reason I went to his place after he had been put in jail. His apartment was all smashed. His new radios, Walkman, guitar, windows were all smashed and blood was splattered all over.
He was back in jail in solitary confinement again. He went to court in February and was sentenced to one day. He was sent to a hospital for 10 days before he came to court, and then back to jail and the court. He was very deteriorated by this time. His teeth were all knocked out because he had been abused on the street. His personal hygiene was not good. He was not able to even change his clothes properly or anything any more.
I tried to find him somewhere to live, someone to look after him. They said, "Oh no, he is not a danger to anyone or to himself." I said, "I believe he's a danger to himself because he's unable to care for himself. He's a danger to me. He's a danger to my family. He's a danger to anyone he would meet on the streets because he could become psychotic anywhere."
This is just one instance. One time he went before a review committee in the mental hospital he was in and they declared him sane enough to leave. He got back to the Sault all right, but the first thing he did was, he went up to a doughnut shop and bought a cake. They said he was fit and ready to return to society; he was sane. He bought a big cake and he just pushed it in somebody's face. These are some of the things that went on in his head, and these are some of the things he would do. There are many other things.
In February I found him another place to live. The last time I saw Neil alive was three days before I found him dead. On June 2 I went to visit Neil as I did three to four times a week. I had misplaced the key to his apartment. He did not answer the door, so I thought he must be out for a walk or maybe visiting someone. That is what I wanted to believe, because he did not answer when I knocked. It was a nice sunny day. So I went back home.
I went back again the next morning, Monday, about 11 o'clock. I knew he was dead. I tried to get in touch with his landlord to get a key to let me in, but the landlord said he did not have time to go home to get his key and all this kind of thing. So I phoned the police -- they were well aware of Neil; they all knew Neil -- and told them I was sure he was dead because of what I could smell coming out of his apartment. They said they would go right away and attend to it. I just told them: "I'm sorry. I can't go with you." They said it was all right. I asked them to call me back right away, regardless of what they found. They called back and told me Neil was dead.
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The Chair: In the few remaining moments, maybe what you could do is offer some suggestions on how we could avoid this happening again.
Ms Schreiber: The way the Mental Health Act reads, there are no places for people like Neil. Anywhere I have gone or any time I have spoken to an advocate, they have been anti-medication, "He'll be better off without," but they do not know my family members who were ill or what they were like before they became ill. They were kind and loving. Can I just say a little bit about my daughter here, please?
My daughter Sandra was diagnosed in 1985. Her life went very much the same as Neil's, very much the same up until now. She was very suicidal. She had, I do not know, maybe 14 suicide attempts but lived on the street because she was not able to live with me. She became pregnant and gave birth to a child four years ago and she lived on the streets until the child was born. I had to talk with the children's aid, social workers, whomever, to make sure her baby was not born on the street. The baby was born in the hospital, made a ward of the children's aid, and is, as far as I know, adopted out.
I hope and pray to God that it is a warm, loving, caring home because we read so many things today about child abuse, especially with adoptive parents or care givers, and this not knowing breaks my heart. I have never been able to hold this grandchild or even see this grandchild or acknowledge this grandchild. She talks today of her child, and two days after her baby was born she was back living on the streets. Somebody I know saw her sleeping in a doorway. She had been in and out of jails very much the same as Neil.
I feel that both my children have fallen through the cracks because of the way the law has been a barrier to treatment for them. The advocates have no real knowledge of their illness or what they were like before. They only see them just a little bit while they are in the hospital. There is no ongoing care given to them from any advocate that I am aware of, other than saying to Sandra or Neil, "You don't need to be in a hospital. You don't have to have this medication if you don't want to."
I realize the side-effects of the medication, but either they are crazy or a little bit stabilized by this medication. It is catch-22. That is how I see it. I believe that the parents or the family members who know the mentally ill person should have some say or should be able to give some information or input into the treatment of this mentally ill adult or child.
There is very much abuse of drugs and alcohol along with this. My daughter never drank or smoked before she became ill. Now she drinks and she smokes and she abuses drugs as well.
The Chair: Thank you. If you would not mind a few comments and questions?
Ms Schreiber: I will try to answer them.
Mr Poirier: Could you elaborate a bit on who these advocates were you consulted who would tell your child, Neil, that he did not need to take his medication and whatever?
Ms Schreiber: Lawyer.
Mr Poirier: Lawyers?
Ms Schreiber: One. A lawyer, yes. A lawyer and people from advocacy groups. I do not know their names.
Mr Poirier: Were these people you sought out to consult or who were appointed to help you by somebody? How did it come about?
Ms Schreiber: They were appointed to help my ill daughter and son.
Mr Poirier: Who appointed these advocates?
Ms Schreiber: By the law, to tell them their human rights from the courts, I believe, according to the Mental Health Act.
Mr Poirier: If I understand what you have said, you do not perceive that experience to have been very -- what word could I use -- positive. You did not appreciate the type of advice they may have given your son and daughter. Did I read you right?
Ms Schreiber: Yes. It did not seem to do anything, to get them the help they needed. It discouraged them, because in their psychotic state of mind they are unable to distinguish one from the other. If somebody told them one thing and somebody told them the other thing, then they were just totally confused. But one thing, they did not want to be on medication. They refused medication.
Mr Poirier: Did you feel that these advocates did consult you or take into account what you had to say or think?
Ms Schreiber: I did have a meeting with one. I just met him in the hall of the hospital. He came up to me and said, "You know, your son, Neil, doesn't have to be here. He shouldn't be here." I looked at him and I just said, "Yes, he does need to be here. That's why he's here." He said, "You can just take him home today if you want." I said, "No, I worked hard to get him in here because of his mental illness. He is a danger to himself and to others because he would one minute just be sitting quietly and then all of a sudden this rage or craziness would go on in his head and he would attack. You never knew what he was going to do."
Mr Poirier: Okay. Thank you for coming forward and sharing that with us. I have many more questions, but take it away, Mr Chair.
Mr J. Wilson: Thank you, Mrs Schreiber, for having the courage to give us your testimony today.
Along the same line as Mr Poirier, I assume you have made many attempts over the years to try to get people to listen to your side of the story and how your children were at home. I am particularly interested in, when your son was taken to the hospital on the one instance with blood on his hands, how the police could not interpret that as being a danger to himself or others.
Ms Schreiber: They did at that time.
Mr J. Wilson: They did?
Ms Schreiber: At that one time, yes.
Mr J. Wilson: You mentioned he was given 10 days of assessment prior to the court.
Ms Schreiber: Yes. I went to the court and to his bail hearing or whatever it was, and I heard the doctor there testify that Neil should have a 30-day assessment. But it was only a 10-day assessment because he was right back in the Sault Ste Marie jail in about 10 days. It certainly was not 30 days.
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Mr J. Wilson: Did the judge not request any further treatment for Neil?
Ms Schreiber: The doctor in the psychiatric hospital made a strong recommendation that Neil be put on a Lieutenant Governor's warrant at that time.
Mr J. Wilson: That was not followed up by the court?
Ms Schreiber: No. He was sentenced to one day with nowhere to go.
Mr J. Wilson: Just so you will know, and I am sure you do know, your plea to us to try to ensure that in the new legislation family members and those who are trying to do what is best for their loved ones have some say in getting their loved ones into treatment and that sort of thing is something we have heard consistently. The problem the government runs into is that in our society, as you know, under the Charter of Rights and Freedoms the individual has significant rights that, according to the Constitution, have to be safeguarded.
I do not know if we are going to come up with the balance you require, that the family have some input. If we cannot get it into the law, we will have to get it into the training of advocates to ensure they take a balanced approach to not only informing the patient of his or her rights but also ensuring that the family's wishes and experience are taken into consideration, because you are the person most experienced in these cases.
Ms Schreiber: Yes, because I have never had any help from an advocate coming forward and saying, "I'll help you find a place."
Mr J. Wilson: It is almost as if families need advocates too.
Ms Schreiber: That is right. We need to be heard and to have some say. We need help dealing with our mentally ill son or daughter. I know of many families that have also --
Mr J. Wilson: Including my own. So you will know, I have a brother with schizophrenia, and while it has not been as tragic as your life, it very much parallels the weekly incidents that families put up with, and when the system throws your brother or child back to the family, ignores you, but then expects you to look after the child too, it is very frustrating.
Ms Schreiber: It is not only frustrating but it is very fearful. It is like I am powerless. There is nowhere to turn. There is no help. We do not have anything to protect us. I had to change jobs because I was not getting the rest to do the proper job I was doing because for years I hardly slept or I had to leave and sleep somewhere else. There are many other families that belong to the Ontario Friends of Schizophrenics chapter and they all have the same horror stories, pretty much the same as mine; most do. Some of them have even been held hostage by their ill child, much the same as Neil would do to us at times.
Mr Winninger: You, like many family members, have come to the committee and expressed the frustration felt in trying to get treatment for children or spouses. Under the Mental Health Act, of course, the psychiatrist would have to find the patient incompetent to consent to treatment at the time of examination. This has led to problems where people need treatment but are not aware of it. In fact, many times they check out of hospital whether they are getting treatment or not.
Our legislation, Bill 108, the Substitute Decisions Act, in combination with Bill 109, the Consent to Treatment Act, should actually afford parents and other family members more assurance than they had before because you can apply as a family member and, as a family member, you would probably be preferred to become a guardian for the personal care of that child or other family member. By being appointed guardian, and if the order so provides, you can actually have that family member admitted to a mental facility and presumed to be admitted voluntarily.
Moreover, as a guardian of that person you can consent to the treatment of that person, and again it is deemed to be voluntary because you have been judicially appointed as the guardian for that person. As has been pointed out in several other cases, this helps with the revolving-door syndrome where family members check in and out of facilities; get treatment for a short time and then go off it. This will ensure that you as a family member can demand and receive the kind of treatment for your cherished family member that you want. I think it is important that the public understands the impact of this.
Ms Schreiber: That sounds very good, but what bothers me or confuses me is, I will be the guardian and I have to care for or look after whatever my child is doing 24 hours of the day, 365 days of the year. What happens when I am sick -- I have been in hospital for different things -- or I have to go away somewhere, like I am here now?
Mr Winninger: That is where you need the support services.
Ms Schreiber: Who would be there to be the guardian when I am not there?
Mr Winninger: I suppose you might have different scenarios. You might have partial guardianship where your guardianship would just extend to giving consent. You have mentioned the hospital and treatment, but you make a good point; you do need those support services. Virtually every guardian probably requires support services in the community to do her or his job.
Ms Schreiber: Also, what happens when Sandra, my daughter -- we will use Sandra as a for-instance -- decides to jump in somebody's car and ends up in Vancouver? She did end up in Vancouver where no one knows her and she got put in jail. That has happened to her; she just got put in jail and was back out on the street, that kind of thing. That is something else that I do not see working, this guardianship.
Ms Carter: We certainly feel for you, and you made it very clear that something here needs to be addressed. I am not sure whether the advocates you speak about work for the advocates under the Psychiatric Patient Advocate Office, but I just want to make it clear that as a body it is not opposed to medication and would not advise somebody to refuse it. Its function is to give information to the person regarding his rights and his rights of appeal, to determine his competency and not to oppose medication as such, although we have heard presentations here -- we had one this morning -- from groups who are opposed to medication as such, so I wanted to make that distinction.
Ms Schreiber: I do not suppose they are totally opposed, but they say this to someone who is ill, a mentally ill person who does not want the medications in the first place because they think, "You're trying to poison me; you're after me," in those states of being crazy.
Ms Carter: It is a question of whether the person is in a state to make that decision, is it not?
Ms Schreiber: Yes. In one instance that happened, my daughter was in the hospital and an advocate came in to tell her her rights, so then she went around and told all the other patients their rights and they all refused medication. It caused a lot of chaos on this floor.
The Chair: Mr Wilson, one brief comment.
Mr J. Wilson: I just need a quick clarification, Mr Chairman. The comments by Mr Winninger I do not think should stand alone. I would like clarification from the parliamentary assistant. I think Mr Winninger is correct to a point, except that under Bill 108, if the patient appears to have a lucid moment when you finally get that patient, say, to the emergency ward, the doctor says, "The patient does not seem incompetent to me," and the patient therefore could then refuse treatment. We had testimony yesterday where indeed that was the case. Is that not the case? Are not the most recent wishes of the patient to be honoured?
Mr Winninger: We may get a further opinion as well, but I think it should be clear that this is not like an enduring power of attorney where the patient can express a more recent wish that might run contrary to the earlier desires expressed in the power of attorney. We are dealing with a judicially appointed guardian here, and I do not think the attending physician can ignore the wishes of the judicially appointed guardian.
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Ms Bentivegna: The Consent to Treatment Act states that if there is a guardian acting then there is no determination of capacity done at that time, and it is the guardian who acts for that person. The only way would be to go back and revoke the guardianship order.
Mr J. Wilson: And the courts, in giving the guardianship order, we would expect, would give a time frame for that guardianship?
Ms Bentivegna: It would be open to them.
Mr J. Wilson: Okay, thank you.
Mrs Cunningham: My question is -- I cannot see the part here in the act itself -- to appoint the guardian in the first place, you have to declare that the person is incapable of managing his own affairs, is that not correct?
Mr Winninger: It depends whether you are talking about guardian of a property or guardian of a person. When you talk about --
Mrs Cunningham: I am talking about a person.
Mr Winninger: There has to be a finding of incapacity.
Mrs Cunningham: That is right, and I would suggest that in many of the cases that some of us are involved in in our offices, because we meet with the parents of some of these young people, they never would get guardianship for that purpose because it would be very difficult even to prove your son or daughter incapable on an ongoing basis.
Mr Winninger: We have heard a number of presenters giving anecdotal evidence about their family members who went out in the bitterly cold weather with no coat on and other examples like that where clearly they cannot make decisions that would indicate capacity. In these kinds of situations an appointment of a guardian would be warranted, and I think a court would find it warranted.
The Chair: Ms Schreiber, on behalf of the committee I would like to thank you and your daughter for coming and giving such a personal presentation.
Ms Schreiber: Thank you for allowing me.
Mrs Cunningham: Mr Chairman, could I just ask a question through you to Mr Winninger, because I think this is an important point. I do not think that this particular legislation would change the method by which the law right now can appoint someone as a guardian. Am I correct on that? We have a separate piece of legislation right now where people are declared before the courts to be incapable of managing their rights. That exists at this point in time; that is my understanding. I just want a clarification on that.
Mr Winninger: Under the Mental Incompetency Act there is a provision to appoint a guardian of the person, but it has virtually never been done.
Mrs Cunningham: So we have existing legislation now which we can apply, but it is just not used, is that your point?
Mr Winninger: Not as it stands. Mr Fram certainly is the expert in this area.
Mr Fram: One of the difficulties with the Mental Incompetency Act is that it has many provisions addressing the issue of management of property. It has one provision that says, "By the way, you can also be the committee of the person." It does not say what powers a committee of the person has. It does not say what limitations apply. It was designed in the 19th century when treatment was not much of an issue at all, so it does not address all of the issues that have taken place with respect to treatment and care in the 20th century.
Mr Chiarelli: In what circumstances under Ontario law can somebody apply to be appointed the committee of the person, other than the Mental Incompetency Act?
Mr Fram: There is no other provision.
Mr Chiarelli: Did I understand somebody to say that it is very unusual and that it is not done?
Mr Fram: There may be a few exceptions, but it usually arises out of hospital care. Under the Public Hospitals Act there is a regulation that provides that the public trustee can apply for committeeship for the purpose of making an order about treatment of a patient with nobody else to make decisions for him when the person is in a public hospital. The public trustee's office has been doing that for the last year or so.
That, basically, is all the use that is made of it. It used to be used in the past sometimes when hospitals would get a clergyman, the pastor at the hospital, to apply for the guardianship or committeeship of someone who did not have any family to make a decision for him. That is the use of the Mental Incompetency Act today. By and large, because it does not say what authority a guardian or a committee of the person has, nobody knows what the limits are, the authority to the review the -- it is just sort of an add-on to the authority to manage property.
Mrs Cunningham: I think it is a very important point, if you do not mind, Mr Chairman. On section 46 of Bill 108, where they are describing that the person is incapable of personal care if the person is not able to understand information, and it goes on, is that the part of this bill that would describe an incapable person?
Mr Fram: Yes.
Mrs Cunningham: Who decides that the person is incapable?
Mr Fram: The process the bill provides is that, first, there is an assessment of capacity by assessors of capacity -- that is, people who have training in doing assessments. If the application is uncontested, then the documents are filed, along with a guardianship plan -- that is a plan saying how you plan to use the power -- with the public guardian and trustee's office. Then, if there is no dispute, no appearances filed, an advocate goes out and sees the person who may have a guardianship imposed. If no objection is filed to the guardianship order, it will go before the court with no hearing, and unless the court is concerned, an order will be made. If the matter is opposed, if an appearance is filed in court, then the matter will be decided by the judge.
Mrs Cunningham: Does that exist right now, or is that because of this new law?
Mr Fram: That is because of the bill.
PEOPLE FIRST OF ONTARIO
The Chair: I would like to call forward our next presenters, from People First of Ontario. Good morning. As soon as you are comfortable, could you please identify yourselves for the record and then proceed.
Mr Sears: My name is Norval Sears, president of People First of Ontario. On my right is Patrick Worth, past president of People First of Ontario, and on my left is Judith McGill, our provincial adviser. The reason we have an adviser here is to help us understand a lot of things that we do not understand when we are having trouble understanding, and she is also here to help us to get through our presentation if we get stuck or something.
Just a little bit about us: Our group has all been labelled. We have a board, which is all labelled, so it is not run by outsiders or advisers or anything. We run our own organization. We also have advocacy as part of our organization, and so on down the line.
I have two stories to do with the advocacy part. One is what would happen without an advocate, and the other one is with an advocate involved.
The one without an advocate: We had two members, Tom and Linda Moore. They did not have an advocate in place at the time they had their children taken away from them by the children's aid society. Before that, they told their stories to the police. At this point, Linda Moore was raped, so they went to the police to tell their side of the story. What happened was they separated Linda and Tom. Instead of bringing them together and letting them both talk about her story, they kept them separately. Linda told them she had been raped. They did not believe the story at all at this point. Then when it got to the court system, she told her story again, but no one at the court believed that she has been raped. They think she is making the story up.
What happened was, down the road, their children were taken away from them by children's aid because they could not look after them. They came up with some kind of excuse, saying something about their not treating their kids right.
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Down the road, we advocated on their behalf at one point. We also had some help by lawyers to put it in perspective and help them with the legal system. Unfortunately the legal system did not help them at all. At first it started helping them pretty well, until one person did not think they had any other chance, so she stepped down from the position.
The final thing was the legal system took over, actually, at that point. What happened was, their children were taken away from them. They tried to fight to get them back but did not succeed. They have children's aid involvement. They have been seeing them once a week, with a person there with them when they see their children. Their children could not call them mom and dad at all, because they did not know what their mom and dad looked like. So they could not call them mom and dad at that time.
Anyway, down the road there was not much offered, so they had them consent to a form to legally have somebody adopt their children. At this point the husband could not read or write. Whatever was in front of him, without an advocate there to help, he signed that paper without realizing what he had done. The adoption was done legally. In other words, he gave up his own children with this paper. That was part of the story of what can happen without an advocate there.
The other story is partly my story. I had an advocate helping me through my life at one point. I had a lot of pressure built up in me. My son was born a little earlier than he was supposed to be. I had a lot of other commitments brought into my life right then, such as how to support my wife and my child. But a lot of people said I could not get married or have a child at all. A person I know who is very trustworthy and close to my heart said I could do anything I wanted to do, because you have to believe in yourself. You can really work your hardest if you believe in yourself. What happened is, we talked a lot about my troubles and we worked it out together. He said to me, "Just take one day at a time; you start with one thing and then you finish what you have to do."
I have done that and it has turned out pretty good, because this person really gave me a lot of advice. I still go to him once in a while to talk about the other pressures I have. We work it out together. It worked out fine for me, because now I still have my own son, whom I almost lost in a way to the children's aid. I am married and I do have a son and he is still with me right now. This person really helped me out wonderfully. Without an advocate I probably would have folded and gone underneath the pressure which built up, and I probably would be broken down or in a hospital or something.
Advocacy is the most important thing right now, and there is a case we are dealing with, the Christopher Robin inquest, with these kids. These kids did not have an advocate who could speak on their behalf. I know they were just infants or one-year-olds, but still, they did not have any advocate to tell the doctors not to give them what they gave them. They can let them die. If they had an advocate, I would think they would have a better life than what they have right now. Most of them are dead now.
So I think this advocacy is really important to all of us who have been labelled, because we are people who have been labelled as having trouble with everything. We like to live out in the community, and most of us do, but it is just that label that is bringing us back. If there was an advocate in place, the lives of these people who are in institutions would probably be a little different from what they are right now. So this advocacy part is really important.
I would like to just turn the rest of it over to Patrick Worth.
Mr Worth: Just a brief background of the advocacy review. Back in 1986 when the government decided to appoint Sean O'Sullivan to put together a review, he decided to do this by getting together a consumer advisory committee which was made up of people with disabilities representing their organizations. I was the member from People First of Ontario sitting on that committee.
I spoke to Sean O'Sullivan about the lifetime that People First members have had of being isolated and institutionalized. He took to heart what I had said about my own personal experiences and those of the other people who have had personal experience of segregation and long-term institutionalization. He began to realize that there needed to be a shared advocacy model of paid advocates as well as volunteer advocates. We are people who have had a lifetime of just paid people in our lives and it has led to nothing but big bureaucracy and segregation and people having control over our lives. We do not believe it has to be that way. We have to have the power, as decision-makers, to decide who our advocates are and what role they will play in our lives.
Sean O'Sullivan called the review a shared advocacy model because he did take to heart what he heard from People First members about how vulnerable people are when you have just one system for one group of people that segregates them and labels them as mentally handicapped. The title is You've Got a Friend because O'Sullivan really believed that advocacy should mean you have a friend -- not a bureaucrat, not somebody representing a service, not someone paid to represent a service or advocating for a service but somebody advocating for needs of people who are vulnerable and answering to those people.
The independent advocacy system must be consumer-controlled. We must have a commission of people with disabilities that is majority-run by people who have suffered in isolation, institutionalization and segregation and who know what it is all about to teach advocates how to advocate for vulnerable people, to teach advocates to feel the sensitivity and the personal feeling of friendship and to know that we must have friendship and advocacy.
It must not be allowed to become another bureaucracy. We must not have another bureaucracy that fails people, that becomes so bureaucratic we just deal with things on a business level, file things away on people, keep records of people for our own statistics and people just become a statistic.
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The independent advocacy system must be easy to access. People have to know how to get in touch with people and to know who their advocates are. Most important of all, it must be very personal. We have suffered too much with people who have not felt the same things we have felt about punishments we have had in segregation and isolation, both in institutions and isolated communities. We must have a personal feeling towards each other and it must be an equal relationship between the advocate and the individual.
At the People First of Canada founding convention this year, our membership voted in favour of taking a stand against guardianship legislation. We must not have a law that takes away all the rights of an individual. Whether or not people can speak for themselves should never be an issue. People should have the right to exercise a right. People should always have the right to an advocate. People should always have the same rights as people who can speak for themselves. I very often think that what is needed is for people in society to truly listen to people whether or not they can speak for themselves.
We call ourselves the decision-makers for people who are vulnerable but we should not be, because empowering people means that you respect the right of people to make their own decisions. You help them make their own decisions; you do not decide that they cannot make their own decisions. You must decide to support people in coming to a decision in an equal relationship.
The issue of the adult protective service workers becoming advocates under the independent advocacy system needs to be reviewed. APSWs do case management work; that is a program. I do not know if it is clear to all APSWs that if they become advocates under the independent advocacy system they cannot run a program; they must be there for the personal needs of the individuals.
We think we must have the right to decide who our advocates will be. That is the importance of having an independent advocacy system controlled by people who are vulnerable. We will remain vulnerable if we cannot have the right to decide who our advocates will be. If we have guardianship legislation you take away all of our rights. By law, you take away all of our rights and it becomes the right of another person to decide what to do with another individual's life.
Mr Chiarelli: I want to thank you both very much. I think you have explained very graphically the issues we are dealing with and, without saying so, you have demonstrated that it is a very difficult area to legislate in because we are dealing with people's feelings, we are dealing with their emotions and we are dealing with their dignity, and it is very difficult to legislate that type of issue and pass laws on that type of issue.
I think what you are saying, and I would like you to explain it to me, is that if there is a good system of advocacy for certain people, a partnership between the advocate and the individual will eliminate the need for guardianship. Is that what you are saying? If there is a good marriage between the advocate and the individual, then you do not need that label of guardianship or the legal umbrella or framework of guardianship.
Mr Worth: That is partly what I am saying, but I think we are also saying that guardianship does the opposite. It eliminates the friendship that people could have, the more personal friendship, because if you have the right to decide by law and make all the decisions in a person's life, you will always have more social status than the vulnerable individual.
Mr Chiarelli: Obviously there are different levels of decision-making which apply to different levels of vulnerability, if I can put it that way, in terms of an individual. Even the word "vulnerable" is a label in itself. There has to be collective decision-making in certain circumstances at any level of decision-making. I like to share and get the advice of my wife on major decisions that affect me. On political decisions I like to have the advice of my colleagues. So there has to be some partnership in decision-making, but there is a range of experience and capability. If I am going into something new, different or difficult in the political arena I will put a lot more weight on some of the advice I receive from people with experience. Obviously there will be certain circumstances of some individuals who have much less experience and knowledge in decision-making. How do you decide the role of the advocate or, if this legislation were to proceed, how do you decide the role of the guardian in making that collective decision?
Mr Worth: Let me take a shot at it. It is a difficult question but a necessary one. What makes it collective is an equal partnership. There have to be collective decisions made, but if it involves that individual's life it must be a decision made to respect that individual's decision. If the individual disagrees with you, then a collective decision must be made to respect that decision.
For instance, Judith McGill is our adviser, but she often acts as our advocate too and she is our friend. She gives us advice and she talks to us about personal things, but she always allows us to make our final decisions. It is sort of collective because we do go to her. We do not make decisions without talking to her and without respecting her point of view, because she has become a personal friend. That is why the relationship has worked, because we feel the sensitivity of how vulnerable people are.
Mr Chiarelli: Some people who have been before this committee have suggested that the advocacy part of this legislation should proceed but that the other aspects of it such as guardianship, consent to treatment etc should be deferred for further discussion or refinement. Do you agree that from your perspective the advocacy portion should go ahead but the guardianship part of it should not go ahead?
Mr Worth: I think you have to look at the advocacy legislation carefully. We believe that persons who cannot speak for themselves should have the right to an advocate as much as the person who can. That is not clearly identified in the advocacy legislation and we want that to be clearly identified in the legislation before it goes ahead.
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Mr Chiarelli: You want to see the act changed, then, even the Advocacy Act?
Mr Worth: There are some changes that need to be made. The guardianship legislation: It is our sincere hope that you would decide to drop it, because it does not empower people.
Mr J. Wilson: Thank you very much for your presentation. You bring up a very good point about guardianship.
My question, in my own attempt to understand fully what it means, is to the government, through you, Mr Chairman. When someone goes to court for a full guardianship over an individual, my understanding is that you would have to ask the court for specific elements of that guardianship. For instance, say I were to go to court for guardianship, I would ask the court to specify in the court order that I would be able to make decisions with respect to treatment and with respect to admitting that person to a psychiatric facility. Can I only ask for those elements in which the court deems that person to be incapable? Because we also know that a person can be capable and incapable with respect to certain treatments.
Mr Fram: The court can only give a guardian power over those areas in which the person is incapable. That is, unless it is established that you are incapable with respect to those kinds of decisions, the court cannot grant you the authority.
Mr J. Wilson: I understand that. I will talk to you separately to get a feel of what actually would go on in court in deciding what areas one would be capable in and incapable in.
Mr Malkowski: Thank you for a wonderful presentation this morning. I have been out to meet some of the People First, and I think it is a marvellous organization. I think it is wonderful to see how they demonstrate they can run their own meetings. I was so impressed when they had me to their meeting. When I have been there and been able to observe some of these people in action, they run their organization just like everyone else, and it is great to see that.
Now, related to the Advocacy Act, do you feel that the Advocacy Act is necessary then as a foundation to get through? Would you like to see that move ahead? Do you agree with that?
Ms McGill: Could you repeat that last part so that Norval could hear it, please?
Mr Malkowski: What I am wondering is, would you like the Advocacy Act to move ahead, to proceed, to be passed? Would you think that would empower and help people?
Mr Worth: We would like to see it move ahead, but we think that it would be a mistake to exclude people who cannot speak for themselves from the act. We would like to see it move ahead with those recommended changes in the act.
Mr Malkowski: Do you have any specific recommendations, things you would like to see in it?
Mr Worth: It must be a sure advocacy model. It must be both paid and volunteer.
Ms Carter: I just have one question to ask you. The advocate as described in the act is somebody who listens to the client and expresses his wishes and desires. You are saying that advocacy should be extended even to those people who cannot express their own wishes, and I am not quite sure how that is possible. If the advocate cannot ascertain what that person's wishes are, how can he function?
Mr Worth: Well, we think they can, if you stop thinking in terms of people as clients. That leads to a more impersonal relationship, and people cannot possibly understand under those circumstances. But we feel, and we have seen it happen, where vulnerable people who come out of institutions, people have made homes for them, not because they can understand every word, but because they can understand the feeling of a more personal relationship.
Ms Carter: I see. You are saying that because the relationship is a more informal, intimate one, a much larger range of people can be included because their wishes will become clear in that kind of relationship?
Mr Worth: Yes.
Ms Carter: I see.
Mr Winninger: Just briefly, I wonder if you would agree that there are some people in society who may be totally incapable of making decisions. I am thinking, for example, of an extreme case of someone who is in a coma. Do you think that would be an appropriate situation calling for guardianship?
Mr Worth: No. I think that calls more for the most important reason why an advocate must be a friend. I think it calls for the most important reason that, even though somebody is sleeping or somebody is unconscious and cannot hear you, he can feel your presence.
Mr Winninger: Would it concern you if people who were not guardians were making the kind of decisions that guardians make but not being accountable to anyone -- not to a court, not to a board or not to any authority? Let's take your example of an advocate as a friend. Would it concern you if that advocate were making decisions for someone who could not make decisions, and yet would not have to account to anybody?
Mr Worth: Accountability must be always to the individual. We are talking about declaring somebody mentally incompetent by law. Who do we always say the law is supposed to be there to serve? If we declare people mentally incompetent we are singling people out, and when people are singled out they always become vulnerable. They are mostly segregated and mostly poor. That leads to a big bureaucracy and that leads to service providers and that leads to a number of ways that people can be potentially exploited. But the most crucial point about being labelled mentally incompetent is that we already have so many labels. We do not need another label.
Ms McGill: Just for clarification. David was asking you whether or not advocates should be accountable to a legal system or to some other kind of system, and you are saying that the accountability should always be to the individual?
Mr Worth: Yes.
Ms McGill: And that is part of your partnership model: If they had a sense of the person they would always go back to what they feel the person would want and need.
Mr Worth: Yes. That is why Sean O'Sullivan titled the review of a shared advocacy model You've Got a Friend.
Mr Winninger: I think I understood what he was saying. I may not agree with it, but I think I understood what he was saying.
The Chair: Thank you, Mr Winninger. Mr Worth, Mr Sears and Ms McGill, on behalf of this committee I would like to thank you for taking the time out this morning and giving us your presentation. Thank you. This committee stands recessed until 1:30 this afternoon.
The committee recessed at 1219.
AFTERNOON SITTING
The committee resumed at 1341.
The Chair: I would like to call this meeting back to order and call forward our first presenters, from the Easter Seal Society.
Mr Chiarelli: Mr Chairman, I wonder if I could make a brief motion before that.
The Chair: Yes, Mr Chiarelli.
Mr Chiarelli moves that the standing committee on administration of justice sit for an additional two days, or so long as is necessary, to accommodate the list of people who have asked to present briefs to the committee.
Mr Wessenger: I am just wondering, Mr Chairman, is it possible to have this referred to the subcommittee for discussion?
Mr Chiarelli: No, I would prefer not to, because we had a subcommittee meeting yesterday where we agreed to do just that, and we came in and presented the subcommittee meeting and the government side asked for a recess and came in and voted it down. I think the discussion should be on the public record that the committee has before it a request by somewhere between 10 and 12 presenters, including the official guardian, and that we have an obligation, I think, as MPPs, to accommodate the people who want to make presentations. I think that should be on the record.
The Chair: Any further discussion to Mr Chiarelli's motion?
Mr J. Wilson: I would support the motion in light of the fact that some very well-informed groups would like the opportunity to present to this committee, including, I believe, the public trustee of the province. I think it would be very important to have that input before final legislation is proposed to the House.
The Chair: Further debate, Mr Malkowski?
Mr Wessenger: Mr Chair, I would like to have some information --
Mr Malkowski: I would like to ask for a 10-minute recess, please.
The Chair: There is no vote being called yet, but if you want, we can call a 10-minute recess.
Mr Malkowski: Yes, I would like to do that, please.
Mr J. Wilson: Do we get to vote on these recesses?
The Chair: This committee stands recessed until 1:55.
The committee recessed at 1343.
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The Chair: I call this meeting back to order. Further debate on Mr Chiarelli's motion?
Mr Morrow: If it so pleases the committee, I would like to add an amendment to Mr Chiarelli's motion. I would like to delete "or so long as is necessary" and put two specific days, being March 24 and 25.
The Chair: The committee cannot determine which days we sit, that is up to the House leaders and the whips, but you can have the amendment to delete "or so long as is necessary."
Mr Morrow: With the two specific days. Thank you very much.
The Chair: Debate on the amendment? Seeing no debate on the amendment, all those in favour of the amendment? Opposed?
Motion agreed to.
The Chair: Further debate on the main motion, as amended? Seeing no debate on the motion, as amended, all those in favour? Opposed?
Motion agreed to.
The Chair: We will now refer this to the House leaders and the whip's offices to determine whether or not we can sit for the extra two days.
EASTER SEAL SOCIETY
The Chair: I would like to call forward our next presenters, from the Easter Seal Society. Our apologies for the delay. As soon as you are comfortable, would you please identify yourself for the record and then proceed.
Mr Dawson: Thank you for giving me this opportunity to speak to you on behalf of the Easter Seal Society. My name is Alan Dawson. As well as being a representative of the Easter Seal Society, I am also the parent of a child with a disability. My daughter has spina bifida, hydrocephalus and uses a wheelchair. She is nine years old now. Just over a year ago, when she was seven, she had a major brain haemorrhage which further impacted on her disability: She lost the use of her right arm. But she maintains a positive and very active outlook on life and nothing has changed in her personality.
The Easter Seal Society celebrates its 70th year as a charitable provincial non-profit organization. We are dedicated to helping children with disabilities achieve their full potential and future independence by providing direct services, program research, advocacy and public education. Programs I am sure you are familiar with are nursing services, camping, preschools for disabled children, financial assistance towards the provision of equipment and parent support services.
As of September 1991, there were 7,904 children on the case load in Ontario, 7,158 of whom are children under the age of 16. The society has 3,640 moderately dependent children on the case load and 1,759 totally dependent children. These are children who need the support of family or some medical services to maintain their existence. Of these children, 1,766 are non-speaking as well as being dependent, and 268 are medically fragile and technologically dependent; 20% of the children come from one-parent, female-led families existing on a single income; 38% of Easter Seal families earn below $20,800 per annum, with 14% earning less than $9,000 per annum.
We are astounded and extremely disappointed that in a country where human rights are treated with the utmost respect an act could be proposed which excludes the most vulnerable group of our society. I am referring to Bill 74. I cannot help wondering what the rationale is for excluding these children who are every bit as vulnerable as any adult. Is it perhaps expected that parents will adopt that advocacy role? This presumes that parents are endowed with the necessary skills, experience, confidence and knowledge to articulate for their child's individual requirements or, on a grander scale, for systemic changes.
Parents of a child with a disability are subjected to a variety of additional stresses other than those associated with normal parenting. As a parent, I can attest to this fact. There is an initial process of grieving when you first find out about the child's disability or when the child is born, tremendous guilt feelings and a variety of emotions as parents learn how to deal with one crisis after another. It is a never-ending cycle; it never stops.
Many medical procedures which are normally carried out in hospital are performed by parents at home. These can include physiotherapy and catheterization. Catheterization is something that is done on an intermittent basis. It is done in schools by teachers' aides; it is done at home. The families have to provide that service. Physiotherapy is the same thing. You have physiotherapy but you have to do some of it at home.
Where other children are involved parents must meet their needs as well as earn a living. Financial problems abound, as special equipment such as wheelchairs, vans, lifts, home renovations, private therapy -- many children need therapy on a frequent basis; they cannot access it through the system so they have to resort to private therapy; most families cannot afford it at $60 an hour -- have to be paid for.
Families are often forced into heavy debt as the only option of preserving their child's wellbeing and independence. Most of us as parents are trying to maintain as much independence for our children to make those who are able to get out to work earn their own livings. A lot of them are going to do it but they need a lot of help. Many mothers cannot make the choice to work to help the family finances, so it automatically means most families are a one-person-income family.
The physical demands on individuals cannot be imagined. You can imagine that some of these children get kind of heavy. You have to lift them into baths; you have to lift them in and out of bed. It is not easy. The constant strain of having to give them their treatments at the appointed times, getting them in and out of cars, getting them in and out of vans, is a tremendous physical strain on families.
Stress is often transferred to the marriage, resulting in many breakdowns. This places further stress on families and breaks even the most resilient human will. Many families rarely if ever get out as a family and many husbands and wives rarely do, even for anniversaries or birthdays. They cannot afford to, they cannot leave their child because you normally cannot leave a child with a disability with a regular babysitter, or they are simply too fatigued; they are too tired. How can they then be expected to have either the time or the energy to advocate? Certainly not efficiently, especially where systemic advocacy is required.
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The load for a parent with a disabled child is heavy indeed. We need help. We need your help and we need the help that can be provided by Bill 74. If the needs of disabled children are met in accessing the best of health and rehabilitative care, education and social services, they will have an infinitely better chance of becoming productive, self-reliant individuals who contribute to their communities rather than becoming dependants on public resources.
Advocacy services contemplated by Bill 74 ought to be extended to include children under age 16, which is virtually the whole of the Easter Seal case load in Ontario. If this is done, it should also carry an amendment so that parents representing disabled children and being secondary consumers have proportionate representation on the Advocacy Commission and in the selection process of the appointments advisory committee. Provisions governing accountability of advocates, rights of entry and access to records should be revised to meet the needs of children. Parents and appropriate health care professionals should be consulted before any amendments or revisions affecting children are made.
I would like to address Bill 109. When parents learn they have a child with a disability, they take on the responsibility of raising that child with total commitment, dedication, self-sacrifice and always with the best interests of the child at heart. Parents are used to working as partners with the health care givers, the doctors, surgeons, therapists, psychologists or any other specialist identified as needed by their child. They are used to making decisions on required treatments, some of which have long-term benefits if administered at the appropriate time.
It is a rare child indeed who, when confronted with the barrage of necessary and sometimes frightening procedures and treatments, will not protest, perhaps hysterically, at the thought. I know I have had to on occasion actually hold my daughter down when she was younger because of some treatment that was essential to her, and talk to her sympathetically and all the rest of it, but I still had to hold her steady so they could do whatever treatment was necessary without hurting her. It is not easy to do, but we had her best interests at heart.
Bill 109 provides an environment in which a child, purely out of natural fear, can refuse treatment and create an adversarial situation between parent and child. The child is acting on impulse, with little cognition of the facts and benefits of the treatment. The parent is acting in the best interests of the child, having gone through a lengthy process of medical consultation and soul-searching.
I can give you a quick example of a family right now that is going through whether to have their child go through a rhizotomy procedure. This is a procedure that children with cerebral palsy often have that will improve their muscle tone and their ability to walk, and in some cases it is recognized that this treatment would work for them. Now, this family is going through a long process of research. They have seen the Hospital for Sick Children, they have been to the treatment centres such as Hugh MacMillan and Erinoak. They have gone down to the United States to consult with doctors down there. I would say they have the best interests of the child at heart before they make a decision. This is what families are doing.
The procedures contemplated in Bill 109 are indiscriminate and apply whether the proposed treatment would constitute physical or psychological abuse of the child. It is the reasonable risk of harm or abuse from treatment, and not the wish of a frightened child under age 16, which should trigger the costly and invasive adversarial procedures between parent and child. The advocate intervention, the appointment of the lawyer, review board hearing and appeal to the courts which form part of the process can surely be dispensed with when we are obviously dealing with a natural reluctance on the child's part to undergo treatment. Again, the costs come in here, because if an adversarial situation exists, families are going to be forced, if the advocate gets a lawyer, to get a lawyer. Families cannot afford it, so what is going to happen?
The wish of the child should only be one factor to consider in determining whether mental or physical abuse will result from treatment. Even in an exceptional case where treatment may result in abuse or harm, an intermediate investigative counselling procedure should be available to the parent and the child. Should the potential for abuse exist, this is surely more appropriately covered in legislation designed to address child abuse.
Bill 109 as drafted has the potential of delaying treatment, disrupting hospital schedules -- the way it stands at the moment, if children protest, the doctor may not be able to carry on with the treatment, might cancel surgery; it could be chaos in the health system -- severely damaging the parent-child relationship and placing an additional emotional and financial burden on families who are already carrying more than their fair share. We ask you to please give serious consideration to the total impact of this bill on all levels of its targeted population. Thank you for your attention.
Mr Chiarelli: Thank you very much for your submission. I would like to ask counsel a question or two arising out of your submission. In particular, you rightly point out that the advocacy bill, Bill 74, specifically states under section 3, "This act applies in respect of vulnerable persons who are 16 years of age or older." Then when you go to Bill 109, consent to treatment, subsection 10(7) says, "This section also applies" -- this refers to involving advocates in the process -- "if the person is less than 16 years of age and has demonstrated a wish to give or refuse consent to the treatment on his or her own behalf."
I would like to ask counsel what the factors are that went into drafting the legislation that says it is okay to have an advocate for this one particular purpose, but not for the many purposes that this presenter has suggested it might otherwise be appropriate for.
Ms Bentivegna: The reason for the provision of rights advice in the Consent to Treatment Act is that if children want to make the decision, therefore feeling they have capacity, and if they are found incapable, they are given the same rights as an adult who is presumed capable but found incapable. Bill 74 was introduced before Bill 109; therefore, there is not the consistency saying that -- the exception for the provision of this rights advice by an advocate in Bill 109.
That is the reason for the difference, because one was introduced before, but the idea being that if the child or the under-16 is saying that they want to make that treatment decision, and then their capacity is assessed and they are found incapable, they are given the same opportunity to dispute that finding.
Mr Chiarelli: There is an understanding and an acknowledgement in Bill 109 that for certain purposes, someone under 16 could be considered a vulnerable person or a person requiring advocacy. I cannot make any logical conclusion, and I conclude that it is rather arbitrary that it is only in this one instance that the advocacy provisions of Bill 74 apply to children.
I share the concern as well that age is very arbitrary. Using an age in the legislation is a very arbitrary way of dealing with the situation. It is very possible, and it occurs very often, that a 13- or 14-year-old can be as mature as a 16- or 17-year-old, and a 16- or 17-year-old can be as immature as a 13- or 14-year-old. Certainly there should be criteria set rather than an arbitrary situation, because but for one day it is possible that the advocacy provisions would apply, and if you are one day short in a particular circumstance as an individual, you do not get the benefit of the legislation.
I guess my questions are (1) why is it appropriate under just that one circumstance in consent to treatment and (2) why is it so arbitrary as to set a fixed date?
Ms Bentivegna: With the fixed age there is that presumption, so that if you are 16 and over it can be presumed you are capable and there has to be reason to believe you are incapable. But you can also be found incapable; it can be rebutted. For under 16 it is the opposite. You are incapable unless you as a young person trigger the determination of capacity, and if you are found incapable, then you are treated the same way as the over-16. So it is used to provide some reference point for those using the act.
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Mr Chiarelli: But perhaps you can envisage an advocate, as contemplated by this legislation, working in the field, working on the ground, in an institution, a medical setting or what have you, confronting the situation of a so-called child who is 15 years, 360 days old and being handcuffed, and not being able to do advocacy for that particular child but for the fact that the child was not five days older. Do you not see how arbitrary it is and how you might be handcuffing the whole process?
Ms Bentivegna: All I can say is that under consent to treatment, it is a much narrower role that the advocate plays in giving rights advice, in telling the young person, in this case, they have a right to challenge the finding of incapacity and a right to go to a review board. That is the role that is circumscribed. It is not the broader role.
Mr Chiarelli: I guess I will cut to my last question, and it is kind of repeating the same question. You are talking about a responsible advocate in the field coming across a circumstance where you have a 15-year, 360-day-old child, and that advocate cannot exercise his or her judgement to provide advocacy services because that child is under age. Do you not see that as being a significant impediment to the process?
Ms Bentivegna: I can ask my colleague on the Advocacy Act, but there is that cutoff that was made.
Ms Spinks: If I could just add something briefly, I think my colleague correctly delineated the difference between rights advice and broader advocacy, and with respect to the broader advocacy rule, the Advocacy Act is quite clear. The purpose under clause 7(1)(b) is "to provide advocacy services to help vulnerable persons to express and act on their wishes" and so forth. This is very much client-directed, and we have heard from a number of parents that for the advocate to act on behalf of an individual in those circumstances where the parents still have custodial rights and interests applying creates problems.
The Chair: Further questions?
Ms Carter: You state that you are very disappointed that Bill 74 excludes the most vulnerable group of our society. By definition, Bill 74 is setting up advocates to carry out the wishes expressed by vulnerable persons, not to act in their best interests as they see them, but to carry them out. Now, if we are talking about the children who are vulnerable, then are they really in a position to directly express their wishes and have them carried out by an advocate, because most of them do in fact have parents.
It may be that what you are really asking for is that the parents should be given more support and advice. It may be that this is something Ontario should be thinking about, but that would maybe come under a different act. But certainly it does not seem as though this act is particularly relevant in that case.
Conversely, you are expressing fears that under Bill 109, the express wishes of children might interfere with medical treatment and so on, which seems to be the opposite of what you are saying in connection to Bill 74. You seem to be asking for the children's direct wishes to be taken into account.
Mr Dawson: Bill 74 is potentially a good act, but we are just wondering why children are excluded from a service that is being provided to a vulnerable person, whatever that term "vulnerable" means. That has not been clearly defined. I would consider that children are certainly in that group. But our real concern about that is that by not being involved in the act, we are not involved at all in the process of selecting advocates. Yet when it comes to Bill 109 -- as Mr Chiarelli was saying earlier on, Bill 109 says now an advocate will be appointed for that child under 16. The parents would have no say in the selection process because they are excluded from Bill 74.
Ms Carter: Yes, though in connection with that I could say that section 15 of the bill does list the categories to be on the appointments advisory committee. There are only going to be 12 people on the commission and we have six categories here which are multiple categories. We are really looking at an impossible situation, trying to represent everybody who could be affected.
Mr Dawson: You cannot represent everybody.
Ms Carter: No.
Mr Dawson: I think all we are asking is that children be included in the Advocacy Act so that if parents need to advocate, whether on a systemic basis or whether just individually, they have the services of an advocate.
Ms Carter: Really you are saying that it is the parents who need the advocate rather than the child.
Mr Dawson: The parents on behalf of the child, the parent being the custodian or the legal guardian of the child. Yes. The child at three, four or five years old may not be able to stand up here and say, "This is what I need," but the parent can. The parent is speaking on behalf of the child, knowing the child, knowing the needs of the child.
Ms Carter: In which case you wonder why there is a need for an advocate.
Mr Dawson: The need is because parents really do not have the skills, the energy or the time to advocate, as I said in the presentation. Parents are burnt out. If you meet a group of parents, everybody is struggling because the stresses are far greater than with a normal family. You have your normal family stresses --
Ms Carter: That is understood.
Mr Dawson: -- but these are all additional. The stress is totally different.
Mr Wessenger: I am interested in your statement where you said that surely this whole process of advocate intervention can be dispensed with when we are obviously dealing with a natural reluctance, on a child's part, to undergo treatment. I think it is clear that the intent of the legislation is not to have four-year-olds, six-year-olds or nine-year-olds, because of their natural reluctance, requiring an advocate to be brought in.
Mr Dawson: I am not concerned with that.
Mr Wessenger: At what age do you think children should have the right to have an advocate advise them with respect to questioning their incapacity?
Mr Dawson: It seems to me that the real purpose behind the act is to protect people from possible medical abuse, from having treatment that could lead to abuse. Most families are not going to jeopardize their children and put them in that situation. You cannot put an age on it. I have known 12-year-olds who are so articulate or so mature, and I think Mr Chiarelli referred to that about an 18-year-old who maybe is not. I do not think you can put an age on it.
Mr Wessenger: Really I think the intent of the legislation is to allow capable people to make decisions with respect to their own treatment, and I think we are trying to ensure that that take effect. Of course the mechanism that has been developed is this presumption with respect to 16. In common law, for instance, there is no presumption and the question to be determined is based on the individual child and whether he or she has the capability.
Mr Dawson: Right.
Mr Wessenger: Would you support more that principle of looking at the child?
Mr Dawson: The way it is working now with the common-law approach, there do not seem to be very many problems. I have not been aware, certainly in the disabled environment -- I am talking about children -- of any abuse problems to do with medical treatment. Obviously the common-law factors are there. A child of, say, 12 who is very articulate can make up his or her own mind about things. I am sure the parent is going to pay attention to him or her, as indeed do the doctors. In fact, many doctors will include these children in the discussion about proposed treatments.
Mr Wessenger: But let me just put the scenario of the 12-year-old or 14-year-old who wants to make a decision about his or her medical treatment, which is contrary to the treatment of the parent. To determine whether that child has the right to make that decision in that category, surely you then have to look at whether the child has the capacity to make that decision, would you not agree?
Mr Dawson: I would say the child has the parent to make the decision for him. Legally a child has a parent or a guardian until at least age 16 and all kinds of decisions are made.
Mr Wessenger: You would basically not support the right of the child under 16 to make a medical treatment decision on his own. Is that what you are saying? I just want to be clear.
Mr Dawson: Not strictly on his own. I think we should pay attention to what he is saying. I think it should be done in consultation. I referred to the fact that maybe we could find some other format for maybe a third party to come in, similar to the advocate suggestion that you have but without invoking the whole of Bill 109, just maybe somebody to arbitrate in the situation, to look at the pros and cons, the reason for the treatment, the benefits of the treatment, the negatives associated with the treatment and listen to both parties. You do not need to put the child and the parent in a strictly adversarial situation where both parties may have to hire legal counsel. That should not happen.
The Chair: Thank you, Mr Wessenger. Mr Dawson, on behalf of this committee I would like to thank you for taking the time out this afternoon to come and give your presentation.
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HOSPITAL FOR SICK CHILDREN, DIVISION OF ADOLESCENT MEDICINE
The Chair: I call forward our next presenters, from the division of adolescent medicine, Hospital for Sick Children. Good afternoon. As soon as you are comfortable, could you please identify yourselves for the record and then proceed.
Dr Kaufman: I am Dr Miriam Kaufman. I am from the division of adolescent medicine at the Hospital for Sick Children, and also an assistant professor in the faculty of medicine at the University of Toronto. With me are Dr Eudice Goldberg, who is the director of the division of adolescent medicine at the Hospital for Sick Children and who is also an assistant professor in the faculty of medicine at the University of Toronto; and Dr Françoise Baylis, who is with the department of bioethics at the Hospital for Sick Children and who is a lecturer at the University of Toronto.
We are here today to speak to you about Bill 109, An Act respecting Consent to Treatment. The division of adolescent medicine at the Hospital for Sick Children agrees that there is a need for a unified approach to consent to examination and treatment in Ontario. We feel that much of what is in the bill is progressive and of benefit to adults, but we have concerns, both practical and philosophical, with the bill's approach to people under the age of 16. It is our belief that the arbitrary cutoff of 16 as the age above which one can assume capacity and below which one cannot, disenfranchises young adolescents. The assumption that they cannot take responsibility for any of their medical care is patronizing. To base a doctor-patient or therapist-patient relationship on an assumption of incapacity which must be rebutted changes the nature of that relationship in a very basic way.
Perhaps this effect can be more easily understood if you consider what would happen if this bill assumed incapacity for all native people and capacity for everyone else. A native person would go to his doctor, who would say: "I can't treat you yet. There's a law that says you're not competent to consent to treatment. I can rebut that but I have to ask you some questions to determine if you are really able to consent." This interaction makes it clear to the patient that all the power in the relationship is vested in the physician. The patient's own assumptions about his competency are called into doubt.
Much of the work that we do with youth is aimed at empowering them. We try to help them to take responsibility incrementally for their lives and to deal with and enjoy the ability to become autonomous. What kind of power can a person have who is assumed to be incompetent?
By specifying a certain age limit, you are essentially requesting practitioners to view all patients under 16 as being the same. This view is contrary to our knowledge of child and adolescent development. In fact, most adolescents under 16 are both cognitively and emotionally mature enough to give informed consent. Incapacity, with respect to consent to treatment, is definitely the exception and not the rule.
The basic issue that needs to be addressed in this legislation is the balance between the adolescent's right to good medical care and his or her right to consent to or refuse treatment. The balance between these rights must be maintained.
In drafting this legislation, recognition of the difference between capacity to consent to treatment and capacity to drive, vote or drink has been given. What must also be recognized is that the capacity to consent to treatment may vary from procedure to procedure. There is a spectrum of capacity to consent to treatment that the proposed legislation does not recognize, given that all those under 16 are to be presumed incapable with respect to all treatment. A 14-year-old may be competent to consent to acne treatment, HIV testing or birth control counselling, but not to refuse psychiatric treatment or chemotherapy.
A letter from our hospital to professor David Weisstub, chair of the Inquiry on Mental Competency, states with regard to the process to determine capacity:
"The rigour with which it is applied should increase as the risk to the patient increases. What we are suggesting is that in situations of low risk, that the process required is one in which the practitioner should be required to ascertain for himself or herself in some perhaps informal fashion that the person is competent to make the judgement that he or she is making. As the degree of risk increases, the process should be one in which there is a clear and careful documentation that an assessment of the person's competency to make the decision has been carried out."
The ability to consult a doctor and be treated without parental consent or knowledge is very important for an adolescent who is in need of confidential services. Examples of such services include birth control counselling, sexuality counselling, safer-sex counselling, treatment of sexually transmitted diseases and psychotherapy. Most teenagers will not seek treatment if they cannot be assured of confidentiality by their physician or if they even perceive that confidentiality is not assured. Also, although the notion of advocacy services seems on the surface to be an appropriate option, introducing a third party, perceived by the adolescent as an outsider, might be sufficient to drive them away from needed services.
As health care providers who deal exclusively with adolescents, we feel that subsection 8(2) will severely limit access to health care services for those under 16 years of age. Even though the proposed legislation allows for rebuttal of incapacity on an individual basis, there is the very real possibility that the perception by most teenagers and by many physicians will be that young people can no longer be assured of confidential health services. As has been the case in 16 states in the United States, where parental notification or judicial bypass have been instituted, major delays in treatment will occur and access to health care services will be adversely affected. This will not only affect individual youths but also result in increased costs to the health care system, with increases in teen pregnancy, pelvic inflammatory disease, AIDS and other preventable problems.
The proposed legislation, however, puts a particular onus on the health care provider to rebut a presumption of incapacity codified in law. Even if physicians practising adolescent medicine continue to provide confidential medical treatment to patients under 16, many others in Ontario will not do so. This will become particularly troublesome in smaller, rural or remote communities, where access to treatment for adolescents may already be limited. This legislation may allow those physicians whose own personal values oppose any expression of adolescent sexuality to refuse service, based on the assumption of incapacity. There is no incentive to rebut the presumption of incapacity in this legislation.
Further practical concerns regarding this proposed legislation include the following questions:
1. The present government has already endorsed anonymous HIV testing. How will Bill 109 be enforced when individuals are not even required to identify themselves? If HIV testing and counselling become an exception to Bill 109, what differentiates this service from birth control counselling, acne treatment or other health care service that young people are seeking?
2. How will youth no longer living at home receive adequate medical care?
3. Under subsection 16(3), adolescents under 16 who have children of their own will not be able to consent to their treatment. Health care providers are trying to promote responsible parenting. Having a third party introduced to provide consent for examination and treatment to children of adolescents will impede this necessary developmental process. The availability of this third party for the frequent medical visits required for young children will be exceedingly difficult to guarantee.
We suggest the following:
1. Remove subsection 16(3).
2. Eliminate any arbitrary age limit for capacity to consent to all medical treatment and maintain what is currently in place through common law. Requirements for capacity to consent should be based on the relative risks involved in consenting to or refusing treatment.
3. Ensure that all advocates have specialized training in child and adolescent development and that they are all sensitive to the special needs of youth.
Just before our presentation we were made aware of a series of amendments that have been tabled, one of which we would like explicitly to endorse. It asks that section 8 of the bill be struck out and substituted by:
"A person is presumed to be capable to consent to treatment if he or she is capable of understanding the nature, purpose and consequences of the treatment."
We feel that this is a much better definition than any arbitrary age definition.
Further, if there are any other amendments to be proposed, we would appreciate being informed of these in a timely fashion so that we may respond. The implications of the proposed legislation are far-reaching and it is important that we have an opportunity to respond to them.
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Mr Chiarelli: I believe the amendments are Progressive Conservative amendments, not government amendments, that you may have been looking at. I do not think the government has shared or tabled any amendments at this point in time.
Mr J. Wilson: Just as good, though.
Dr Kaufman: I hate to agree with a Progressive Conservative, but actually it is a good amendment.
Mr J. Wilson: That hospital was funded so well and run so well under our government, I do not know where you people get these mythologies from. How you could support these two parties is beyond my comprehension. Have you not seen the province go down the toilet in the last seven years?
The Chair: Order, please.
Interjections.
The Chair: Order. Mr Chiarelli, you have the floor.
Dr Goldberg: We would hope that political differences would not stand in the way of a very important piece of legislation and that no matter which party said what, I think I, along with Dr Kaufman and Dr Baylis, feel strongly that there should not be an arbitrary age for consent.
Mr Chiarelli: I appreciate the comments in your brief and I appreciate the experience that you are bringing to the table. I think frequently legislators have notions and principles which they want to enshrine in legislation and we do not always translate that into how it is going to work on the ground. What I would like you to do for me and the other committee members is to describe, perhaps by using one or two examples, what would happen in your hospital, how treatment is delivered and how medical practitioners act, if this legislation were to pass as written now. What would happen in the clinics, in the examining rooms etc that you feel is unpalatable?
Dr Kaufman: I think we should probably both speak to this. Speaking for myself, if this legislation is passed I will ignore it in terms of assuming -- I am not going to ever assume that my patients are incapable of giving me consent and that they are incapable people, because it will completely change how I deal with them.
My concerns are much more for what is going to happen outside our hospital, where people are perhaps not as attuned to the best interests of these kids, and that outside when someone comes and says, "I'm thinking of having sex with my boyfriend, can I have some birth control?" a physician will say: "You know, you're not capable of giving consent to that. I can't even tell you about it because that's also treatment, but we can go through a whole process to find out if you're capable." The kid will then say: "Forget it. I already waited 10 minutes out there in the waiting room. That's too long. I'm leaving."
Mr Chiarelli: But presumably your hospital is going to set some guidelines to operate under for this legislation.
Dr Kaufman: Yes.
Mr Chiarelli: What do you anticipate those guidelines will be and do you think everybody will be like you and just ignore them?
Dr Kaufman: No.
Dr Goldberg: I think it will create absolute chaos, because I do not know how this particular piece of legislation can be implemented. Our area of expertise is in dealing with teenagers, so I would rather restrict my comments to that, although I know that certainly this will have a great impact on delivering health care to younger children as well.
I think the greatest danger with this legislation, no matter what the intent, as good as the intent may be in the legislation to provide advocacy for people who are presumed to be incapable of giving consent, is that the perception of teenagers will be that they can no longer access confidential health care services. They will come in pregnant when they are 30 weeks and about to deliver. It is just horrendous what can ultimately occur. Kids who do not feel they can share information with their parents will not go to see doctors or other health care providers, and I think there is a real danger out there for teens to just be driven underground.
Mr Chiarelli: If I can just ask one follow-up question very quickly, when the government introduces an amendment to delete subsection 10(7) regarding 16 years of age and under and capacity, and we go back to the common law, could you tell me what your understanding of the common law is, under these circumstances?
Dr Goldberg: My understanding is that when I see patients, I discuss with them what it is that I am about to do and I try to arrive at some assessment as to their understanding of what it is that we have discussed. That understanding is what is vital for them to be able to give informed consent.
Mr Chiarelli: Thank you.
Mr Poirier: You are not the first health providers to come forward with this exact type of statement. You do not need to be a philosopher to understand it. Even myself, as a Capricorn, as a very logical animal, I understand that there is a hell of a lot of logic to it, and it is not hard to understand whatsoever. It is not hard to put ourselves in your shoes as to what the hell do you do with that kind of situation. When we know what is happening with the young people out there, with the difficulty of communications with the family even in 1992, if this is going to shut the door on access to health treatment for kids under 16, I cannot help but be convinced that my friends in government have listened to your and other health providers' proposals for age 16. I know that the legal counsel has also been listening.
I am confident as I look at the fine parliamentary assistant that, even though he says the minister is going to wait to the end to listen to all the proposals, I cannot help but think that either they or we shall bring forward an amendment to respect that type of proposal. I just want to say thank you for coming forward and saying it in very well-put words and I just hope that I get a chance one day to go in front of the board for an excellent hospital and myself make a proposal for a much better name change for that horrible Sick Kids and call it the Children's Hospital of Toronto. I do not know why they would not call it healthy children or whatever, but I hope one day to return the favour and give you a good proposal for change of name for your hospital.
Dr Kaufman: It has a certain historical appeal.
Mr J. Wilson: Appropriately named, I suppose, under a Conservative government at the time. All kidding aside, I do appreciate the support of the amendment. We brought forward the amendment to try and advance these hearings. We have had other groups raise this point. The parliamentary assistant, when he gets his turn, will likely tell you that the government is very concerned about this and is going to do something about it. It seems to us that it would make sense for the government to bring forward its amendment now, so we would not have to take up your time and our time debating things that there seems to be all-party agreement on.
That is why we took that step. It is not an unusual step and, in fact, it is a responsible step that we have taken for many, many years in introducing amendments as the process goes and not saving them all up in the devious way in which this government operates.
I do have a serious question about HIV testing. I think you raise a very good concern. The government has endorsed anonymous HIV testing. I do not know what percentage of people under the age of 16, or how many people are now taking advantage or using the service of anonymous HIV testing. I would be interested to know whether you are aware of those statistics. Second, I would ask the parliamentary assistant whether they have thought this one through in terms of this legislation. I am sure it is not the intent of the legislation, but I would ask for the parliamentary assistant's comments in this area of HIV testing, and my hope would be that this legislation would not in any way impede the anonymous testing of people under the age of 16. I do not know if either person would be aware of the extent of the testing under the age of 16 now, either the witness or the government.
The Vice-Chair: Would you care to answer that, Mr Wessenger?
Mr Wessenger: I am not aware of the situation with respect to the number of children who are being tested for HIV anonymously, since it is a new program that has just been introduced.
Mr J. Wilson: That is fair.
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Mr Wessenger: I do not see that the test of capacity would be any different for that than any other situation in respect to testing. So whatever is determined under this legislation would apply to the HIV testing.
Mr J. Wilson: I think it does because what if you have a child who is under the age of -- a person, I do not consider someone under the age of 16 as a child -- a person under the age of 16? Anonymous HIV testing is crucial especially if that person is involved with drugs. He may not be lucid. He may be considered incapable by an attending physician. Do the witnesses have any comment on that? I do not think that would be a far-fetched scenario, would it?
Dr Kaufman: If we judge that somebody was incapable to give consent, then Bill 109 does not really apply because whether there is an age limit or not, if somebody is not capable to give consent, we do not let them give consent. We do not have numbers on how many kids are going for anonymous testing. All of the testing in our clinic is done nominatively, but we do refer kids occasionally for anonymous testing.
Mr J. Wilson: I thought part of the point was that bringing in an advocate at that point might discourage people from coming forward for anonymous testing.
Dr Goldberg: By definition, the testing cannot be anonymous if we have this information about them: We do not know their names and yet we are asking them their ages? You cannot obtain that kind of information when you are doing anonymous testing.
Mr Wessenger: Can I just follow that? You still have to determine the question of whether they are capable. If an incapable person wanted to be tested, you would still have to determine if he was capable. If he was not capable, then you would have to get the consent of a substitute decision-maker.
Dr Kaufman: Yes, but we are saying we would like to be able to make the same assumption of capacity with people under 16.
Mr Poirier: It is not a question of age.
Mr Wessenger: Thank you for your presentation. I have certainly appreciated your frank statements and I would also like to compliment you on applying the common law with respect to the question of capacity. It is encouraging to see that, you know, you are looking at applying it properly in this regard.
Mr Poirier: If only the law had common sense.
Mr Wessenger: Yes, I like to compliment that approach. With respect to your suggestion concerning subsection 16(3), I understand why you would like it eliminated. I assume the reason you want it eliminated is because of the situation of a parent under 16 consenting for his or her own child. But would you object if, instead of being eliminated, it was merely amended to allow the consent in those circumstances, because I think there are other aspects. For instance, a child under 16 consenting on behalf of a parent might be considered objectionable on the one hand, while it would be quite acceptable for a child under 16 consenting on behalf of his or her own child.
Dr Kaufman: Certainly our concern was for adolescent parents. Somebody asked about practicalities: I have a clinic for babies of teen mothers and it would be a real disaster if somebody else -- so we would really appreciate an amendment.
Mr Wessenger: So you would like that particular problem addressed.
Dr Kaufman: Yes.
The Chair: Dr Baylis, Dr Goldberg and Dr Kaufman, on behalf of the committee, I would like to thank you for taking the time out of your busy schedules to come and give us a presentation today.
CATHOLIC HEALTH ASSOCIATION OF ONTARIO
The Chair: I would like to call forward our next presenters, from the Catholic Health Association of Ontario. Good afternoon. As soon as you are comfortable, could you please identify yourself for the record and then proceed.
Mr Marr: Good afternoon. My name is Ron Marr. I am the president of the Catholic Health Association of Ontario. I want to thank you first of all for taking the time to meet with us today and to let us express some of our views on the proposed legislation which is under review by this committee.
Before getting into details of the review, I would like to take about 30 seconds, maybe one minute, just to tell you who we are and to put in perspective a little bit of where some of our views are coming from on the proposed legislation.
The Catholic Health Association of Ontario was founded in 1931 and is a voluntary association of persons and individuals involved in the Catholic health ministry in the province. Our association has a very diverse membership consisting of a number of hospitals and homes for the aged, nine religious congregations of women who own and operate and sponsor health facilities in Ontario, the Ontario Conference of Catholic Bishops, representing the Catholic bishops of the province, and a large number of individual personal members. The institutional sector of our membership base consists of 27 acute and chronic care hospitals, five hospitals with both acute and long-term care wings and five freestanding homes for the aged. Our members are representative of most regions in the province both in large rural areas and smaller urban centres. We are one of the few -- if not the only -- voluntary associations in this province which focus on health and health cares services in their broadest definition and include both acute and long-term care emphasis.
The first Catholic hospitals in Ontario were established in 1845 in Ottawa and Kingston. Today approximately one in seven hospitals in Ontario is Catholic and we operate approximately 8,000 or 16% of beds in large teaching hospitals, local community hospitals and smaller rural hospitals. Catholic long-term care centres operate approximately 1,800 residential and extended care beds, and among these institutions sponsored by the Catholic church, we employ in excess of 24,000 staff and have operating budgets greater than $1.7 billion per year.
Over the last number of months, the task force for our association has examined very carefully both the intent and content of the draft legislation being considered by this committee.
In general, we are supportive of the legislation and its efforts to protect the vulnerable individuals in our society and to permit individuals to make health care treatment decisions which will be respected in the event of their incapacitation. However, we do have a number of concerns and recommendations we would like to share with you today.
Speaking to you first today will be Sister Kateri Ghesquiere. Sister Kateri is a member of our board of directors and is also the assistant general superior of the Sisters of St Joseph of London, Ontario. She serves on the board of St Joseph's Health Centre of London, St Joseph's Hospital in Sarnia and St Joseph's Hospital in Chatham. Sister Kateri will address the issue of the role of families in this legislation.
Speaking second will be Mr Dan Faulkner. Dan is the vice-president of the Catholic Health Association of Ontario and has particular responsibilities for working with our members in monitoring legislative initiatives by this Legislature. Dan will address the issue of the mission of the institutions, research and public education.
At the conclusion of their presentations, we would be very happy to answer any questions you have. I will call on Sister Kateri to begin discussing her concerns.
Sister Ghesquiere: The members of the task force that examined this legislation, the executive committee and the general membership of the Catholic Health Association of Ontario realize that the legislation proposed in Bills 74, 108, 109 and 110 covers a number of subgroups which have been given the general designation of vulnerable persons, in particular, that subgroup previously protected by the Mental Incompetency Act. Since some of these persons are at times institutionalized and/or do not have close family ties, it is most appropriate to make provision in those cases for other than family members to consent to treatment, and most appropriately, great care has been taken to ensure that all their rights are respected. Other circumstances also exist, such as mine as a member of a religious community, where family members are not the best informed as to personal wishes in the case of illness. I personally intend to take advantage of the legislation to designate an attorney for personal care, even though the provisions of Bill 108 would make it ineffective in an emergency situation.
However, given the initiatives of the past and present governments of this province, especially as most recently expressed in the consultation paper on the redirection of long-term care and support services in Ontario, an increasing number of persons will be cared for by immediate family members.
It is with this in mind that we applaud the objective in Bill 74 to acknowledge, encourage, and enhance individual, family and community support, but we are grieved to find instances when the family is distanced or even denied participation in the decision-making process and a complex procedure required of both health practitioners and health care facilities to initiate treatment. I know media attention and other presentations to this committee have also pointed this out and I will not dwell on examples. However, it does seem appropriate to make a general comment that these pieces of legislation do seem to be more pertinent to long-term disabilities than to those incapacities associated with trauma situations and/or incapacity that comes from acute illness, especially in the more senior segment of our population.
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To make direct reference to our brief, on page 6, I would point out that according to the letter of the legislation, regardless of its spirit, decision-making is very quickly put into the hands of the public guardian and trustee, with the validated power of attorney being mentioned but family very seldom, if at all. Numerous persons are entitled to information resulting from the advocate's findings and recommendations, but not the family, and there is no mention of an appeal mechanism.
Bill 74 mentions in two places respect for cultural diversity, but nowhere in the legislation is any specific safeguard of this cultural heritage put in place. The culture of the guardian and/or trustee and/or attorney would, by implication, have more influence than the culture of the vulnerable person, unless specific written instructions have been given.
I would like to make reference again to those persons who either do not have closely related persons who would be cognizant of the person's wishes or who prefer to have someone outside the family as their substitute decision-maker.
This legislation provides the possibility of a power of attorney for personal care being designated while the person is capable of making such decisions. However, this power of attorney must be validated after the person becomes incapable. Instructions contained in the power of attorney can be followed. It is unclear to me whether this is before or after the advocate has judged incapability. But to expect a person to anticipate all possible areas of treatment is unreasonable. If I know I am in danger of a heart attack, I may provide for possible treatment options, but not for kidney failure or pneumonia or some other disease.
If a substitute decision-maker is to be a comfort to the person who is perhaps aware but not capable of expressing wishes and be of assistance to the health practitioner, then the automatic intervention of an advocate must be re-examined.
Mr Faulkner: In addition to the issues Sister Kateri has just described, the CHAO is also concerned with the potential threat to the mission of health facilities under the current language of these bills.
As a provincial association with a diverse membership consisting of Catholic hospitals, both acute and chronic homes for the aged, nursing homes, religious congregations which sponsor these facilities and the Ontario Conference of Catholic Bishops, we devote a lot of our organization's time to the maintenance of the mission and philosophy of health care institutions. Over the years, religious congregations have brought their shared value system to many communities across the province, often at the request of a community, to respond to unmet needs, and this began a long history of compassion and caring in Catholic health facilities, particularly serving the poor, the elderly and the vulnerable. These values and philosophy are an integral component of the mission of the facility, which are then translated to governance structures, management practices and right down to the day-to-day activities of each institution. To try to summarize these values in one or two sentences is very difficult, but it would include a respect for life from beginning to end and an emphasis on holistic care, and that is treating the whole person, physically, emotionally, spiritually and socially.
We are the largest group of all the denominational health care facilities in the province. They, as well as all the non-denominational institutions, have a mission based on their founders' values and beliefs upon which all their activities are patterned. We are concerned that Bills 108 and 109 in their present form may legislate behaviour on the part of health practitioners which would impinge on the freedom to act within the mission of the facility.
Specifically, Bill 108, subsections 63(1) to (3) and section 66, which outline the duties of the guardian and the attorney under the power of attorney, state that the decision-maker will act in accordance with any wishes expressed or any instructions contained in the power of attorney. In Bill 109, section 4, the health practitioner will be legally obligated to fulfil those instructions or wishes upon receipt of direct consent from the person or the substitute decision-maker. This wording provides no degree of flexibility for institutions and the professional staff to accommodate a patient when his advance directive is in the form of either wishes or written instructions that are inconsistent with the mission of that institution.
Our recommendation to this committee is to amend these sections in a way that will not take away an individual's empowerment to make health care decisions for himself, but to incorporate some degree of flexibility for the institution in situations where these instructions may compel a facility to compromise its philosophy. In fact, wording of this nature appears already in Mr Sterling's Bill 8, An Act respecting Natural Death, in subsection 6(3), which provides for the transfer of the care and treatment of a patient by a health care provider who is unwilling to comply with that person's living will instructions.
I would like to affirm that we do realize these bills have not been drafted to legalize euthanasia, but there does seem to be a growing misconception among the public that this is in fact the case. We suggest extensive education initiatives occur not only for the public but also for the health care practitioners who may have to alter their current practice patterns to conform with the legislation and the associated bureaucracy that will arise.
We are equally concerned with the combined effects of Bill 108, subsection 47(6), and Bill 109, section 15, which completely exclude consent to a procedure whose primary purpose is research unless the person's power of attorney expressly provides instructions to comply for specific research procedures. In reality, many people will not have a power of attorney for personal care, and of those who do, the number which contain explicit instructions to consent to procedures for research purposes will probably be rare. CHAO is concerned that valuable research will not be able to proceed, particularly with young children, who are considered incapable under these bills.
I must emphasize that we do not wish to impart discretionary powers to health care practitioners with respect to research participation and consent, but there are many projects which are non-invasive, with minimum to no risk, which will not be allowed to occur on individuals who are deemed incapable under this legislation. In situations such as these, we do support research activities which are a potentially direct benefit to the incapable person or advances the interests of a particular population.
Therefore, we ask this committee to review this part of the legislation and revise the wording to accommodate research guided by the following principles: There must be no alternative population available, the research must be of minimal or no risk and the appropriate substitute and informed consent is given. Adhering to these guidelines will permit valuable research to continue on vulnerable persons, particularly children, which poses no threat to their wellbeing, maintains the requirement for informed consent from a parent or substitute decision-maker and advances society's ability to control or prevent many diseases and disorders for which we currently have insufficient knowledge to do so.
Thank you very much for your attention and the opportunity to appear before this committee. We would be very happy to entertain any questions you might have at this point.
The Chair: Thank you. Questions or comment, Mr Poirier.
Mr Poirier: I guess you were here for the previous presenters about the age of consent being 16. Does that cause you a specific problem or is it the same type of problem in your hospitals as in the general non-Catholic hospitals?
Sister Ghesquiere: Yes. We did not particularly address that because our concerns were more with families and particular points where we perceive some threat to the mission, but we certainly realize that it is rather arbitrary to say that at 16 a person is capable or incapable.
Mr Poirier: Would you have some specific recommendations to make pertaining to that? Have your health care providers mentioned that to you? Have they mandated you to come forward with a recommendation as to how you feel about that?
Sister Ghesquiere: I happen to know that at least one group will be presenting before you, I believe later this week, mainly on the area of research, but I think they also address that age of consent.
Mr Poirier: I realize your point about family, but unfortunately, as we see today, there is less and less family. There is not your vision and my vision of what we would like to see in society, but between our wish and the reality out there, I guess you in hospitals, and we here, have to deal with families that are not families, as much as we would like to see it. When young people under 16 come into your hospital and seek treatment -- for example, pertaining to the case that was described concerning the Hospital for Sick Children -- what happens in your hospital when the child who is 14 or 15 comes in and wants advice on health issues that may not fit in with your mission, with a capital M? What happens there?
Sister Ghesquiere: We have discussed this at length. I cannot say what happens within the private office of every health-care practitioner. We ask those who work with us to realize what our mission is, what the general teaching of the Catholic church is, and then to use their own consciences to apply that when they are dealing with an individual person.
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Mr Poirier: So in theory, if that is the case, a 14- or 15-year-old girl coming in, or a boy wanting protection for birth control or sexually transmitted disease, can get that same type of advice from a health-care provider if he or she feels that it goes along with his or her conscience.
Sister Ghesquiere: Theoretically, yes. I would not be able to answer in the practical.
Mr Chiarelli: Thank you very much for your brief. It is very comprehensive and well-thought-out. I note here in your brief that you represent 16.5% of the beds in large teaching hospitals, which reflects, I think, over 8,000 beds. You are obviously very interested in this legislation. It is going to impact on you or your member facilities in a very major way.
Do you see any serious problems in the implementation if this legislation goes ahead as is? Previous presenters, in one case Dr Kaufman I think, said that she will ignore the legislation, and in the other instance her colleague doctor said that it would create chaos. What is your perception, understanding of the whole health-care area, as to how this legislation will work in practice?
Sister Ghesquiere: The doctors I have spoken to are really concerned with people presenting themselves, especially in the emergency room. I know that they are presently very careful with respect to consent and have very careful policies with respect to consent. The family is always respected with respect to consent. There are concerns with the fact that they will no longer be able to accept the consent of the close family member, that the family member, under these bills, has at most questionable authority.
Mr Chiarelli: There was one particular point that was made concerning the requirement to give treatment if capacity is found. Did I understand you to say that because of the philosophy of some of your institutions you feel that you would be forced under this legislation to provide certain treatment that you otherwise would not be providing by choice? I am thinking in terms of somebody coming in and saying: "I have capacity. I want to have an abortion performed on me." Are you concerned about that element of the legislation?
Mr Faulkner: Yes. If we are to take an extreme case of abortion or euthanasia -- it seems to be a very hot topic these days; it is being discussed across the country at the federal-provincial level -- if at some point in the future euthanasia is given much wider latitude or perhaps even decriminalized, then the bills as they are written now will obligate the health practitioner and the facility to follow those wishes of that person, if that is what they want.
Mr J. Wilson: Thank you very much for the presentation. Just to follow up with the comments and questions by my Liberal colleagues, I am very much aware of the missions in Catholic hospitals, for instance. My family has a long involvement at St Michael's Hospital -- indeed, I was born there. It does not make me an expert, but it does help. Dr J. K. Wilson is my great-uncle, who served there for many years.
Interjection.
Mr J. Wilson: Yes, the halo is tarnished, I am sure.
Following on the questions of Mr Chiarelli -- that is an extreme case perhaps with euthanasia, although not unfathomable now with the way society is going -- do you have any more practical examples, just to give people a feel for what the mission is and how power of attorney for personal care may at times contain instructions contrary to the mission of St Mike's, for example?
I think an example of the strong Catholic ethos is when a patient goes to St Mike's, for instance, to give birth, the doctors, following the ethos of the hospital, it is my understanding, would always deem there to be two patients, to do the utmost for both patients if there were complications in the birth. Somebody brought this up to me. They brought this forward the other day as an example where there may be some conflicts under the act. For the world of me I cannot remember the argument. I am just wondering if you thought of that, where there would be conflicting rights of patients.
Sister Ghesquiere: I am not sure that that comes under the auspices of this act. I had not looked at that, because that is a capable person. I suppose it could be argued that the infant is not a capable person. I am not sure what the advocacy would be here.
Mr J. Wilson: You know, we are having the Ontario Coalition for Abortion Clinics right after you on today's agenda. I think the question for the government under this act is, when is a person entitled to protection under these acts? The previous group especially asked for advocacy services with no age discrimination. Anyway, we will not get into it here. It is a question perhaps for an ethics committee as much as anything.
I do very much appreciate your recommendation on page 12, recommendation 9, that prior to implementation a cost evaluation be done. I mention that to bring it to the attention of the government, because I am meeting tomorrow with the president of St Mike's, or the outgoing president from St Mike's, as the Health critic for my party. It is a question I have asked many presenters, because it seems to me that in their presentations we often find that the underlying problems are that there are not enough community resources. We had a senior citizens' group saying, "The advocate is going to make sure I get a hospital bed." "Well, there is not a hospital bed for you."
So do you want the $46 million to go to an advocacy system, or would you rather we had the services out there that we pretend we have and that are rapidly declining? I very much appreciate that recommendation and want to flag it for the government's comment and certainly attention.
Mr Winninger: I just wanted to address with you a couple of small technical points you raise in your brief. The first is at page 11. You point out, just about a third of the way down the page, that there is no mention of the grantor's death in a power-of-attorney situation as a means to discharge the power of attorney, as there is in the case of a power of attorney for property. I just wanted to point out to you that in the situation of an attorney for property, if the grantor of that power dies, the property still exists, so you need a provision to deal with terminating the power of attorney so that the will can kick in or the laws of intestacy can kick in. But where the grantor of a power of attorney for personal care dies, there is no one left to care for, so there are no acts that really need be addressed and the reason for a termination is not necessary there.
Then again on page 12, you indicate that there may be some inconsistency between section 15 and the Consent to Treatment Act, which appeared to disallow research on incapable persons. Last week we had some clarification on this -- you can read about it in Hansard -- that section 15 does not change the law with regard to research on incapable people. So that if there is a power of attorney who consents to research with explicit instructions, that can still be executed. Section 15 does not prevent that from happening.
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The Chair: Thank you, Mr Wessenger. Er, thank you, Mr Winninger. My apologies.
Mr Wessenger: Yes, we get mixed up. We are both lawyers.
I was interested in your concern about any interference with your mission statement. What I would like to suggest to you is that really, in this legislation, we see nothing that restricts the right of a health practitioner from transferring the care of a patient whose wishes are instructions that the health practitioner cannot follow. We suggest that is open to the health practitioner to do that, so we do not really see that we interfere with your mission's statement of your institution.
Mr Malkowski: Thank you for your excellent presentation. I want to clarify a point on page 7 where you refer to the advocacy, the making of findings, and recommendations on advocacy under Bills 108 and 109, and to provide an explanation. Also, if a person wanted to challenge or contest those findings under incapacity, what would be your concern so far under the advocacy with not making the decision on that for that person? Could you explain that, please?
Sister Ghesquiere: I think the view of the task force that studied this was, when we put all the series of laws together, it seemed to be very complex on where the family could have any import. The advocate comes in; we realize there are times when the advocate is necessary, but then the family seems to be completely removed from the situation. We thought, as a very minimum, that there should be some right for the family to perhaps discuss or maybe even contest the findings of the advocate, and we could not find that in the bill.
Mr Malkowski: May I just clarify again here? The point is the advocacy: It is very clear that advocates do not make decisions for a person. That is very clear. They simply pass on the options and follow the instructions and wishes under the consent to treatment, as also the rights advice. That is all they function as. It is a very limited role.
Sister Ghesquiere: We did not see that clarity in the legislation.
Mr J. Wilson: But you are right. The advocates come before the panel. The advocate would be there before the family even knows what is going on.
Mr Malkowski: I just wonder if I could refer to the legal counsel to clarify, please.
Ms Spinks: No, I was just curious when you refer to findings and advocates making findings and decisions to what precisely you are referring.
Mr Chiarelli: Last week I asked a question of the legislative counsel in the situation where there is a person under 16 years of age, where there is a finding of incapacity or a feeling of incapacity on the part of the medical practitioner, or they are not sure whether a person has capacity to instruct or not, that an advocate must be involved. The answer last week was that there is a legal obligation to involve the advocate under those circumstances; there is no legal obligation to involve a parent. So that if I as the parent of a 14-year-old have that child brought to an emergency room, or to some health-clinic setting or what have you, and there is the determination of incapacity for whatever reason, the legal obligation, as I understand the advice last week, is to involve an advocate, who most likely is a stranger, and there is no legal obligation to involve a parent.
Ms Spinks: If I could just respond briefly. That is correct, and I am certainly not contradicting my colleague. But I think that is an entirely separate matter from referring to an advocate as making a finding and that this finding should be open to appeal, because there really is no finding with the involvement of the advocate.
Mr Chiarelli: What I am trying to do is emphasize the issue that there is the factor of the family being less included than more included in this legislation. That is one of the concerns of these presenters and is another example that I have pointed out where the family, in a sense, is being excluded legally. From a practical point of view, I would imagine that a medical practitioner would get the family involved, or at least call the family, but there is no legal obligation. If you look at the strict terms of the law, there is a requirement to get an advocate involved, but no requirement to get the family involved under those circumstances.
Mr Malkowski: I just need to clarify again, Mr Chair. I think the opposition misunderstands. There is a different issue here. I would like to ask legal counsel to clarify the issue again.
Ms Spinks: I think it has been clarified. We probably both agree that the advocate is not making a finding or making a recommendation and so we are not in dispute on that issue.
The Chair: One further clarification, Mr Wessenger.
Mr Wessenger: I would just like to clarify that under the Consent to Treatment Act, if the person does not specify in a power of attorney or a guardian etc, the family makes the substitute decisions. It is first a spouse, then a child, parent, brother or sister in that order of preference. It seems to me the family is very involved.
Mr Chiarelli: But the advocate is called in first.
The Chair: Mr Marr, Sister Kateri and Mr Faulkner, on behalf of the committee I would like to thank you for taking the time out of your busy schedules to come and give us your presentation. Thank you.
ONTARIO COALITION FOR ABORTION CLINICS
The Chair: I would like to call forward the next presenters from the Ontario Coalition for Abortion Clinics. Good afternoon. As soon as you are comfortable, could you please identify yourself for the record and then proceed.
Ms Jones: My name is Miriam Jones. I am a member of the coordinating committee for the Ontario Coalition for Abortion Clinics. With me is Sara Ballingall, who is a member of OCAC and a recent high-school graduate.
The Ontario Coalition for Abortion Clinics was founded in 1982 to organize for the legalization of community abortion clinics and the repeal of criminal laws on abortion. We, and the majority of Canadians, according to every reputable poll, believe that abortion is a crucial matter of personal choice for women, a vital precondition of women's reproductive health, sexual freedom, moral integrity and full and equal participation in society.
However, we have never been solely concerned with ensuring free and equal access to abortion. We know real choice can never be free in a society in which women face pervasive discrimination and violence, earn so much less than men and are systematically denied access to power and opportunities. We consider ourselves to be part of a broad reproductive rights movement involved in a number of interdependent struggles -- from access to safe and effective contraception to the right to define and live independent sexualities -- which must be fought and won for women to control their bodies and their lives. We also believe that improved access to reproductive health care must go hand in hand with social policies that support women when they have children. This means enhanced prenatal education, universal day care, parental leave, community midwifery, affordable housing and economic equality for women.
We are here today because of our general commitment to equitable access to comprehensive health care. We applaud the basic direction of this legislation and believe these bills, combined of course with adequate resources, can contribute to health care that empowers individuals.
We have one crucial concern with the legislation, and it is this vital point we want to address here. We believe the age restriction in section 8, which creates 16 as the age of capacity to consent, constitutes an unnecessary and arbitrary barrier to equitable access to health care. It may hinder and prevent young people from receiving such vital services as birth control, pregnancy testing and counselling, abortion, and testing and treatment for sexually transmitted diseases.
We understand you are hearing from public health officials, experts and various health care providers. We will not repeat their specific concerns and arguments, but their main themes have been: first, while the legislation allows rebuttal of the presumption that anyone under 16 is incapable of giving consent, it is not clear what the rebuttal process entails; second, in the absence of clear guidelines, many health professionals could be intimidated from providing services because of the uncertainty about their responsibilities and liabilities; third, even if an explicit rebuttal procedure is established, many professionals simply may not bother to go through with it; fourth, regardless of the patient's understanding and their actual physical, emotional and overall development, there is concern that many doctors will not want to risk providing services. In effect, whether intended or not, age 16 may simply function as an arbitrary cutoff. We want to offer a cautionary note from our particular experience as one of the leading pro-choice organizations.
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The extensive cutbacks to abortion services that occurred in the wake of the federal government's attempt to recriminalize abortion offer a graphic and instructive parallel of what physicians can do if they feel they are at all legally vulnerable. Bill C-43 passed the House of Commons in May 1990. Physicians feared they would be charged under its provisions, which placed the onus on them to form a judgement as to whether an abortion met the prescribed criteria and should be allowed. Massive cutbacks in abortion provision began in Ontario and across the country at that time.
In November 1990, OCAC participated in a Ministry of Health consultation on access to abortion in Ontario. We documented the situation at that time, a situation which subsequently deteriorated even further as follows.
First, leading medical organizations such as the Canadian Medical Association and the Society of Obstetricians and Gynaecologists of Canada had consistently said that a large proportion of the relatively small number of doctors who provided abortion services would stop. A survey conducted by the Society of Obstetricians and Gynaecologists of its members found that 275 would stop providing services if the bill passed. That number was 59% of its members who currently provided abortions.
Next, many physicians had already stopped or cut back on providing abortions. The result was that many communities had fewer or no services. All four doctors providing services in Sault Ste Marie stopped. No doctors in Waterloo region had been taking abortion referrals since Bill C-43 passed the House of Commons. Doctors in Brockville, Oshawa, north Peel, Mississauga, Brampton and York region had stopped. Women from these and other underserviced areas were being referred to Toronto and Hamilton. But even in Toronto there were increasing delays. The Bay Centre for Birth Control, the centrepiece of the previous government's reforms to speed up the process of referrals and provision in Toronto hospitals, had three-week waits for even an initial assessment. Growing numbers of general practitioners were refusing to refer their patients to gynaecologists for fear of prosecution.
We must remember that these extensive cutbacks all took place before the abortion bill was ever passed by Parliament. It had still to be passed by the Senate. Thankfully, as we all know, it never was passed. In fact, it was clear many more providers would be cutting back their services were the legislation to come into force.
The fragility of access to abortion speaks to the ease with which so many doctors abandon their responsibilities. There is little reason to think that physicians in general would be more committed to serving the sexual and reproductive health of young people. The experience of abortion provision underlines concern that doctors will simply stop providing services to young people as a result of this bill.
Sara will now talk about the consequences of this legislation for young people's health.
Ms Ballingall: The input you are receiving from public health officials and front-line providers emphasizes the serious impact on young people if access to sexual and reproductive health care services and counselling is restricted. The results can include higher rates of teen pregnancy, STD infection, abortion, pelvic inflammatory disease, infertility and low-birth-weight babies. Each of these involve critical physical, psychological, social, emotional and economic costs, both to the young people themselves and society at large.
The erection of unnecessary barriers to young people's access to health care and the consequent effects on their health contradict the preventive policies that underlie public health programs. We also note that public health officials have expressed concern that section 8 will also restrict access to counselling and education programs more generally.
To sum up, we believe that fundamental principles within which health care should operate are contradicted by section 8. The principle of equal access to the full range of vital services is threatened if doctors restrict their provision of services to people under 16. The progressive policies of health promotion and preventive programs may be denied to young people, with potentially devastating short- and long-term consequences. The fundamental principle of empowerment, in which individuals have all the information and resources needed to make the key decisions to manage their own health care, is arbitrarily denied to young people.
Ms Jones: The many social, economic and cultural barriers to young people's access to sexual and reproductive health care are well known, yet Bill 109 as it is currently proposed creates a further unnecessary barrier which may deter young people from seeking health services. The ministry has not offered any convincing arguments for why a specific age provision is necessary.
Given the significant concerns expressed by front-line providers and public health experts, and given the serious consequences to young people's health of any restriction of access to sexual and reproductive health services and counselling, the prudent course is simply to delete the age requirement. We recommend that the committee move to amend section 8 to delete any reference to a specific age as a determinant of capacity to consent and make decisions on treatment. We support the motion to be moved in committee that section 8 be struck out and the following text substituted: "A person is presumed to be capable to consent to treatment if he or she is capable of understanding the nature, purpose and consequences of the treatment."
The current common-law practice of health care professionals being able to make judgements as to the capacity of individuals should be retained. This allows individuals to consent to medical treatment if they understand and can appreciate the nature and consequences of the treatment. Thank you.
Mr Chiarelli: Thank you very much for your submission. I am going to ask a question or two very similar to questions I have asked other groups. We have not seen any amendments from the government on this particular legislation, and in a lot of the sections where there have been strong objections from presenters, the government side has frequently defended the provisions and provided rationale for the provision in the legislation. I am not sure we can count on the amendments, for example, you just proposed.
On the assumption that the legislation passes as it is without any amendments, what advice do you think you would have to give a 15-year-old who thinks she may want an abortion or birth control advice? If the present legislation were passed, what would you be telling that particular individual who might come to you or an association for advice?
Ms Jones: It would be disastrous for such people. I would like to point out that only a very small percentage of young people who might be in that situation would be in an urban area where there would be groups like ours or clinics like the Hassle Free Clinic for birth control and venereal disease to go to. It would be a very small privileged group of people who might have access to any information we could give them as to doctors who were ignoring the legislation, or clinics that might be more accessible to them. I do not really know what the situation would look like.
Mr Chiarelli: Do you think you might end up almost having an underground system whereby you know the doctors, such as Dr Kaufman, who said here publicly she would ignore the legislation if it were passed -- you would try to find out which doctors would ignore the legislation and refer individuals to those particular doctors?
Ms Jones: Yes, I assume we would be doing that. Those doctors would be swamped and they would probably be concentrated in urban areas. The effects of the legislation would be disastrous to people living in the northern or rural areas of the province.
Mr Chiarelli: Once again, if this legislation were passed, what advocacy role do you think you would have to undertake within the health care field to try to ameliorate your concerns with this legislation having been passed?
Ms Jones: We would have to find out more concretely -- and I do not think it is in the legislation -- what the rebuttal process involves, and we would have to do a lot of educational work to get the information out to people that they did have a way of rebutting being refused health care. I do not think any of these things are answers, though. I think a very small percentage of people would be willing to go through that process.
Mr J. Wilson: Just a thank you to the presenters. I note we agree on the amendment and hope the government will support that amendment or bring one similar to ours forward in the near future.
Mr Wessenger: I have a quick question to you about this whole age question. It has been suggested by some that if we went to the common-law position of not specifying an age, there would be a danger that many health practitioners might in effect raise the age. Do you see any danger in that?
Ms Jones: No, I do not think that would be a possibility at all.
Mr Wessenger: You do not. Thank you.
The Vice-Chair: I want to thank you for taking the time out of your busy schedule to appear before us today. Thank you very much.
Ms Jones: Thank you for listening.
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OTTAWA AD HOC COMMITTEE ON BILL 109
The Vice-Chair: The next group up is the Sandy Hill Community Centre. I would like to welcome you here today. Give us your names for the record and then begin when you are ready.
Ms Muckle: My name is Wendy Muckle. I am from Sandy Hill Community Health Centre in Ottawa. My colleague is Dr Kate Anderson, who is a physician at the Carlington Community Resource Centre, also in Ottawa. We represent a coalition of clinical staffs from the Ottawa community health centres, of which there are six.
Our community health centres are community-based organizations. We tend to take care of clients who have special kinds of health care needs. In particular, those include adolescents who are somewhat less than involved in the regular system, the proverbial street kids, and other kinds of populations which have special needs. We felt it was important to appear in front of the committee to express our ideas around Bill 109.
Dr Anderson: Our committee wishes to congratulate the Ministry of Health on introducing legislation that is intended to respect a person's right to consent when capable and to provide protection which safeguards their best interests when they are incapable.
There is a need to clarify the requirements of informed consent for both health care practitioners and clients. The existing situation, where one must be 16 years of age to sign a written consent in a public hospital but not in the community, has created confusion in the minds of both practitioners and the public. To ensure that the legislation achieves its stated intent effectively, we recommend that subsections 8(1) and (2) be amended and that capacity to consent with respect to treatment be based solely on mental ability to give informed consent and that the age 16 guideline be removed from the legislation.
The first issue we would like to address is the right to confidential health care. The establishment of a specific age of consent will not clarify the confusion but will instead prevent access to health care services for adolescents and children in some circumstances. Many practitioners currently do refuse to treat adolescents without their parents' consent, despite the absence of any applicable legislative guidelines to that effect. Those who work closely with adolescents know only too well how hard it is to obtain health care for adolescents without parental involvement, even when that clearly meets the best interests of the child. It is our sincere belief that anyone seeking health care has a right to establish a confidential and trusting relationship with a practitioner and that the right to appropriate care should not be determined simply by age.
The second issue is varying capacities to consent. The problem of choosing any one age for consent to treatment is that it will always be an arbitrary measure. Many children under 16 are capable of giving informed consent while others over 16 are not. A child or adolescent may well be capable of consenting to certain treatments and procedures and not to others, depending on the complexity of factors involved in making an informed decision. The use of an arbitrary age ignores the reality of today's society, the variable rates at which adolescents mature and the complexity of medical treatment issues.
Third is the issue of access to health care services. It is our opinion that subsection 8(2), which permits the rebuttal of incapacity by persons who are less than age 16, will have an effect opposite to the intended one. It will confuse practitioners, lawyers and parents and will not encourage adolescents who are capable to exert their right to give consent. Our experience in working with adolescents indicates that an assurance of privacy and confidentiality must be given when the relationship is initiated in order to encourage them to access care and reveal all information relevant to their health needs. To work effectively with adolescents, particularly street kids, services must be hassle-free if they are to be accessible.
We ask the committee to consider the consequences of making it difficult for those under 16 years of age to consent to their own care. It is reasonable to anticipate that we will experience a rise in unplanned teen pregnancy and sexually transmitted diseases in children under 16. In provinces like Saskatchewan, where the age of consent is 18, they are troubled by higher rates of teen pregnancy than provinces like Ontario, where no age of consent exists. Unfortunately, we may also see less reporting of abuse and detection and treatment of depression, other mental illness and addiction in the early adolescent population, despite the prevalence of these problems among that age group. The need to clarify consent issues for practitioners should not take precedence over the health needs of our children and our obligation to protect their rights.
Ms Muckle: I would like to address the issue of litigation. The rise in litigation against hospitals and health care providers has created a climate where there is an unwillingness to provide care where there is any likelihood of repercussion. We are just unwilling take risks any more. It is anticipated that under the legislation as it is drafted practitioners like family physicians will be unwilling to encourage adolescents to exercise their right to consent for treatment before age 16 because they will fear repercussions from parents.
I would like to digress from our brief for just a second and tell you about what has happened recently in Ottawa-Carleton. As I am sure many of you know, we had a very serious outbreak of meningococcus disease, and six of our adolescents died from that disease. The health department went ahead and instituted a mass vaccination campaign on the advice of the region's lawyer, who based his advice on Bill 109 despite the fact it was not yet legislation. The health department required all children under the age of 16 to have their consents signed by their parents. For many adolescents who were quite capable of consenting this was a problem and for the street kids it was absolutely impossible. In fact, what happened was that the community health centres took over doing that portion of the program because we felt it was more important that the children receive the vaccination than it was to protect ourselves from any potential risk under Bill 109.
We have seen something similar in a program that we are doing with the health department on the advice of its lawyer. We are in the middle of doing a tuberculosis screening and treatment campaign for the homeless in Ottawa-Carleton because we have a serious problem with tuberculosis there. The advice of the lawyer was that we should obtain a written consent not only for a Mantoux skin test but to obtain a sputum sample and a chest X-ray. Those kinds of consents are implied consents, and even though the legislation states very clearly that is not what is needed, the interpretation of this legislation in the way it is written is going to seriously impair our ability to do our jobs and our ability to take care of people in the way we should.
I would like to move on to the determinants of health. The issue of determining an age of consent for adolescents is often considered only in the context of dealing with sexuality issues and the role of parents. We hear a lot about access to abortion, and while that is very important, health must be considered in a very broad context, as is articulated in the World Health Organization definition of health, which this government and previous governments have espoused.
Consenting to treatment may involve much more than obtaining prescriptions, tests or having operations. Health care providers are often called upon to assist clients in accessing health, social and legal systems. Advocating on a client's behalf is an important part of health care. We provide health care in urban settings where our clients have access to many services, but we know that in reality in small towns and rural areas in the northern parts of this province where few, if any other, services exist, the local doctor may be the only source of confidential care. For an adolescent or a child to be able to seek care in confidence means a lot more than being able to get a prescription for birth control pills without having your parents know. It means being able to get accurate health information. It means being able to divulge abuse, emotional, social and legal problems. Those needs do not begin at the age of 16. They should be part of an ongoing, trusting and confidential relationship between a provider and a client of any age.
Within Canadian society access to health care is entrenched in our thinking as a right. Our health care system, which is the envy of many, is designed to promote access to care to all the residents of the province. There is no good reason to create bureaucratic obstacles to access for individuals based exclusively on their age. The very definition of informed consent requires the practitioner to determine the ability of individuals of all ages to understand the implications of the decisions they make about their health care. Ethical and professional standards of health care professionals prohibit them from providing care to individuals which is not in their best interest. The safeguards already exist to protect individuals who are not capable of making decisions which are not in their best interests and we feel there is no requirement or need for legislation or additional bureaucratic procedure.
It is our opinion that in its current form Bill 109 will do little to clarify the confusion which currently exists around an age of informed consent. We urge you not to set any particular age of consent but instead to require each practitioner to assess the capacity of the individual seeking treatment to give informed consent based on the definition as outlined in the legislation. We believe this approach will encourage the provision of care to those who are capable of consenting in all situations. It will also challenge us to consider the needs and the capacities of children and to make confidential care more accessible to those who need and want it.
Bill 109, An Act Respecting Consent to Treatment, will serve well to clarify the obligation of obtaining informed consent. For the most part it will respect the rights and needs of those seeking health care treatment. We respectfully urge the committee to consider and protect the needs and capacities of all the residents of Ontario and not deny capable individuals their right to determine their own health care needs. Thank you.
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Mr Chiarelli: Thank you very much for your brief. I want to note for other people in the room that the agenda indicates the brief is from the Sandy Hill Community Centre. However, the brief itself, it should be noted, is presented by six community health centres in the Ottawa area, two of which are in my riding of Ottawa West. They do a wonderful service in the community and I think we should try to encourage them as much as possible. They have on-the-ground experience as well, which leads me into my first question.
Through your study and experience have you determined that there is any need to put an age restriction on consent to treatment as we have in this legislation? In other words, from your experience in the field can you understand why this provision is there?
Dr Anderson: From my experience I do not see a need to specify an age. As a matter of fact, I think it is very helpful to have this legislation that specifically does not designate an age because, as we mentioned in the brief, currently a lot of physicians, because of fear of litigation, are denying access to younger people, thinking there will be repercussions, not realizing they are protected under common law. No, I do not see any need to specify an age.
Mr Chiarelli: Dr Kaufman from the Hospital for Sick Children indicated previously, in answer to a question, that she was going to ignore the legislation if it were passed as is. I am going to ask you a specific question. Are you going to ignore it? If you do not ignore it, how do you think you will have to adjust your way of dealing with patients to accommodate this legislation?
Dr Anderson: I see myself being an advocate for my patient and acting in the best needs of the patient. I would try to deliver health care as best as possible within the realm of the law, but there may be situations in which the best interests of the patient clearly conflicted with the law. In that case, my ethical responsibility would probably come before my legal binding.
Mr Chiarelli: Do you see that conflict arising often enough to give you concern?
Dr Anderson: Certainly in our population, yes.
Mr Chiarelli: On the other point that was mentioned with respect to litigation, one of the concerns I have heard about health care costs on the part of physicians is the cost of malpractice insurance. There is the tendency for people to litigate these days and that pushes health care costs up, because physicians are probably going to want to do the extra tests and the extra examinations, which are an expense burden on the system. Do you see this legislation increasing the defensiveness of doctors in the sense of wondering what is going to happen with respect to litigation, possible court cases and how will that impact on the service you would prefer to give to your clients?
Dr Anderson: I see it very much increasing the fear of litigation. I think anything the government can do to decrease the barriers to care, both implicit and explicit, would really lower our costs. I do not know about the ramifications of the cost system for the advocate system and the rebuttal system, but I feel that the more the legislation can allow physicians to do their job without having lots of extra tests and manoeuvres to worry about litigation, the better. I do see that if the bill is passed as is, it will definitely increase the fear of litigation among physicians.
Mrs Cunningham: I am wondering if I can have a clarification. The 16 years obviously was a contention last week and we are hearing it again this week. Could the parliamentary assistant or somebody briefly tell me why we chose age 16?
Mr Wessenger: I will ask counsel to answer that. I think it has to do with the fact that age 16 is presently in the Public Hospitals Act, but there may be some other reasons.
Ms Bentivegna: Sixteen was chosen as a balance between when a young person is usually able to live on his own and the presumption of capacity under the Substitute Decisions Act that applies to 16 and over. That was one of the reasons. With the rebutting of the presumption of over 16 and also under 16, it was felt that this would address the need to recognize the ability of competent young people to make their decisions. If they were found incapable when they demonstrated a wish to make their decision, then they would have access to the same protections as those over 16.
Mrs Cunningham: Could you clarify the name of the existing act that we are referring to? What act did you say?
Ms Bentivegna: I was saying that under the Substitute Decisions Act that applies to 16 and over. Again, the same presumption of capacity was used in the consent to treatment, but both those presumptions of capacity for 16 and over could be rebutted if the person was determined incapable. For those under 16 the presumption of incapacity could also be rebutted.
Mrs Cunningham: I just wondered if it was referring to legislation that we have to live with now. They are both legislation that we looking at. For instance, we choose 16 for kids to drive cars and we choose 19 to drink and we choose 21 for something else. I just thought you might have been referring to something like that. This one obviously relates to driving cars. That is the only one I can think of, and there might be something else.
Ms Bentivegna: There is the regulation under the Public Hospitals Act which just has 16 as an age to be able to provide consent in a public hospital. There is no rebutting there.
Mrs Cunningham: Okay.
Ms Bentivegna: Under the Mental Health Act 16 is also specified, with a rebuttal under that age.
Mrs Cunningham: Okay, but until this point in time the institutions that are represented here could deal with health care without having any legislation that affects the consent to treatment or the privacy of the individual around what they are doing. That is our problem. Thank you for explaining that to me. It has been helpful. All I can say is that we have already put the amendment forth and we hope the government will be listening carefully and we thank you very much for coming today.
The Vice-Chair: On behalf of the committee, I would like to thank you for taking the time out of your busy schedules to come and give us your presentation today.
I call forward the next presenters from the University of Toronto division of neurosurgery. Seeing as they are not here and we are a little ahead of schedule, we will recess until 4 o'clock.
The committee recessed at 1549.
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WILLIAM TUCKER
MICHAEL SCHWARTZ
CHARLES TATOR
The Chair: I call the committee back to order. Our next presenters are from the University of Toronto division of neurosurgery. Good afternoon. Could you please identify yourselves for the record and then proceed?
Dr Tucker: Yes. I am William Tucker and this is Dr Michael Schwartz. Our third member, Dr Tator, has not yet arrived.
I think you all have a copy of the handout, which I have tried to keep as brief as I possibly could. Our message is fairly simple, and now having talked to some of the people who have spoken to you previously, I think you have already heard some of the points we wish to make. But perhaps we can just briefly reiterate them, and if you have any questions we will try to answer them.
We are concerned about the sections that relate to consent for research involving incompetent subjects, and I have outlined the two sections that bear on that issue. The understanding I have from the lawyers in the university is that the wording is meant to exclude that matter from consideration in the legislation. But we think it is poorly worded. Physicians in particular can interpret that as meaning the legislation does apply to the matter and prevents us from doing that kind of research.
We think the wording is potentially misleading. It may be interpreted to imply that surrogate consent for research involving incompetent subjects is dealt with by this legislation, is forbidden by it, and is illegal because of it. That would exclude Ontario medical scientists from participating even in well-regulated, ethical and scientifically meritorious research. Some of this research can only be carried out on incompetent subjects, and I will try to explain that to you in some detail.
We would like to suggest that those paragraphs, particularly that one expression, "a procedure whose primary purpose is research," which is section 15, paragraph 1, of Bill 109, should either be removed or that paragraph should be set aside from section 15, paragraphs 2 and 3, which are separate issues. It should be separated from them or rewritten to clarify the matter.
I just wanted to mention a few points about why we feel there is justification for research involving incompetent subjects in certain cases. The first thing is that often the condition that we are studying, in neurosurgery in particular, is the condition which renders the patient incompetent. In other words, they are comatose because of a bad stroke or a brain injury. By definition, competent subjects do not have the condition we wish to study. That applies to a number of other disciplines, as you can imagine: psychiatry, paediatrics and so forth.
All of the studies that are done, certainly in this university and as far as I know across this country, nowadays are very carefully scrutinized by multidisciplinary institutional review boards. You have heard from Professor Dickens from the University of Toronto's human subjects review committee. You probably have some idea of the kind of representation those committees have and how carefully they take their responsibilities. These committees evaluate the safety, the scientific merit, the potential value to the individual participant and to society of any of these proposed clinical trials involving human subjects. Ethical aspects are very carefully scrutinized.
The other thing, perhaps from a scientific point of view, that it might be useful or comforting for you to know is that patients who are entered into the type of scientific trial we are talking about actually receive the best available treatment. In fact, there is some evidence that their treatment is improved even if the trial therapy or medication is not efficacious because there is a very high level of quality assurance; these patients are monitored very carefully. So the individual participant benefits in some cases even if the particular therapy at trial does not turn out to be efficacious.
If scientific trials of promising therapy involving incompetent subjects are precluded, physicians are able to use these therapies on compassionate grounds unscientifically. In other words, if there was a therapy that Dr Schwartz and I thought might help someone in a desperate situation and there was no scientific way to study this, we could approach the family and say: "We'd like to try this. It isn't established. This is not a scientific trial," and it would be legitimate for us to do that.
The individual would therefore be subjected to this sort of unscientific use of a new therapy. There would not be any real scientific data generated because there would not be enough numbers. There would not be proper analysis. It would not have credibility with our colleagues. So it would seem a waste when, if this is done properly with an ethical protocol, we can learn from it while at the same time trying to serve these patients.
The other very important consideration is the ethics of benefiting from information from studies of this sort if we are not participants. In other words, is it right for people in this province to benefit from this type of trial going on in other jurisdictions and in other countries if we are not contributors? I think we are expected to maintain the highest possible standard of medical care, but I do not know what the feeling would be if we were not able to contribute to maintaining that standard.
Just to finish, I have two very brief examples I would like to bring before you of protocols of the type we are talking about and the results that were achieved, just to put in perspective the kind of thing we are talking about. The first study was one that I was involved in as the University of Toronto representative. This was a Canada-wide study using a new drug that is thought to be helpful in patients who have suffered a ruptured aneurysm. These aneurysms result in blood spilling around in the base of the brain and producing a delayed phenomenon that we call spasm that impairs the blood flow. This phenomenon can be devastating. It can be fatal, and about 40% of the long-term neurological deficits in patients who survive this particular type of stroke are due to this phenomenon called spasm.
There was a very promising drug, and as much as possible had been achieved with animal experimentation but there was really no adequate animal model to study this definitively. The drug had been shown to be effective in patients who have mild haemorrhage after this type of thing. We did not know if very ill patients, who are much more susceptible to this complication, would actually benefit. So in a randomized trial with patients who were far too ill to be considered competent -- they did not know where they were, what the date was, what their name was -- we obtained permission from their family members. They were entered into this trial. It turned out that patients receiving this drug had a threefold greater chance of a good recovery as assessed at three months, so this outcome difference was significant from a scientific point of view.
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The results have certainly influenced treatment of patients subsequently. It is important not only for good patient care; this happens to be a very costly drug. A standard course of this costs $1,200. It is not the kind of medication that I think you would want to pay for if it were not efficacious.
There was another study that was actually carried out entirely in this university several years ago. Dr Tator and Dr Schwartz were principal investigators in that study, which was to assess the benefit of pentobarbital, a drug that was thought to be of some benefit in controlling high pressure in the head after a very serious head injury. All of these patients, by definition, were unconscious and therefore incompetent. The treatment is very costly and expensive because it renders the patients even more deeply unconscious and dependent on life support systems for a prolonged period of time, so if it is not efficacious, it should not be used. In addition to that, there were some potential side-effects of the treatment, so it certainly should not be used if it is not of benefit.
In this study it was learned that particularly in one subgroup of patients, this particular treatment was not effective, and in fact the patients had a higher mortality and a worse outcome than patients treated with the more conventional therapy available. That has certainly influenced how we treat these patients since that time. I do not think that kind of information could have been derived by any other means.
Mike, did you want to add anything about that study?
Dr Schwartz: Just to say that this was research done at the University of Toronto and in fact that publication was the first in the world on this particular topic -- not exactly the first in the world on the topic, but the first prospective randomized trial, the first carefully done study that could arrive at the sort of information we wanted to have. Our results were subsequently confirmed by other universities. We discovered that, as Bill Tucker said, not only was the drug not helpful for those patients who did not require a blood clot to be removed from inside the head, but it was actually harmful. If that study had not been done, we would likely still be treating those patients with pentobarbital today and causing them harm. So it is very important that this type of research be carried out.
Dr Tucker: That is the end of our formal presentation. Now that Dr Tator has joined us, we will try to answer any questions you might have.
The Chair: Thank you. Questions or comments? Mr Chiarelli.
Mr Chiarelli: It is more of comment than a question. Dr Lowy and several other very qualified people have been before this committee to argue the same points you have presented here today. I can only say that we are hopeful that the government has listened and will bring in some amendments to address this particular concern. If the government does not do so, I assure you that at least the Liberal members of the committee will introduce amendments to address your concerns. At that time, whenever we may be considering clause-by-clause, we may be getting back to you for some assistance in technically drafting the amendments.
Mr J. Wilson: Thank you, distinguished guests, for taking time out to drive this point home to the committee. Really, my comments reflect exactly what Mr Chiarelli has already said. I am always at a disadvantage because the Liberals always go first, but we too will be working with the Liberals to bring forward amendments if the government does not see fit to do so in this case.
Mrs Cunningham: Perhaps I could ask, when the government members have a chance for their questions, if they could answer a question from myself. I am interested in Bill 109, section 15. I am wondering why it was included at all. I would appreciate the rationale, since we are on that section and I did not have the opportunity to hear it before.
The Chair: Would somebody like to respond right away?
Mr Wessenger: I will have a comment when my time comes up that will deal with that issue.
Ms Carter: I would like clarification on one of the points that you made. You said that sometimes a patient can benefit even if the experimental treatment does not happen to work. Surely that must mean that patients receiving that kind of experimental treatment must be getting better attention overall than if they were not? The care givers in that facility must be, as it were, more concerned, and the patients must be somehow getting superior care.
Dr Tucker: That is not deliberate, but is a well-documented truth that happens. The level of monitoring, the quality assurance is better because they are in a study protocol. We certainly do not neglect the other patients by choice, but -- let's say the treatment has no effect: no positive effect, but no harmful effect. We know those patients are probably somewhat better off because they have been in such a protocol.
Mr Wessenger: Thank you for your presentation. I have a question. We had here last week, I guess it was, Professor Dickens from the University of Toronto. He is an expert on the law with respect to the matter of treatment and research, and he indicated to us that the existing common law sets out the situation where you can say research has a therapeutic purpose in that if it is anticipated that it may be of benefit to the particular individuals, it may be performed on incapacitated people. He also outlined the situation that research which had no possible or no likely advantage for the individual, so-called non-therapeutic research, was not legal under the existing common law.
When I look at these two examples here, examples 1 and 2, it would appear to me that example 1 might fall under the category of therapeutic research and therefore might be legal, but example 2 would appear to fall under the category of non-therapeutic research and therefore would not be legal under the existing common law. I wonder if you might comment on that.
Dr Tucker: No, they were both modalities of treatment that were felt to be possibly beneficial, thought to be therapeutic. In fact, in the second example that you refer to, there was considerable sporadic reporting that this was a beneficial treatment in humans and certainly a lot of animal work that supported that treatment, so we thought it might be beneficial. But because there was this potential downside of lowering the blood pressure and because it was a very costly treatment, we thought we had better find out for certain.
In both those things and in virtually all the studies we are talking about in this context, there is potential benefit. We are usually trying a therapy or an agent that we expect and hope will be beneficial, but we have not satisfactorily proven it scientifically.
Mr Wessenger: All right. I appreciate your clarification on that.
Dr Schwartz: May I speak to that? It is just to say that that particular treatment, which in effect is a 10-day general anaesthetic, was proposed very enthusiastically by numerous prominent physicians in both the United States and Canada, and we believed at the outset that it might very well be helpful. In fact, we had given it in just the way Bill Tucker described, as compassionate or last-ditch treatment for people who were not benefiting from the standard type of care, and yet it was not known for sure whether it helped or was harmful. It was by doing the study in a scientific way that we discovered that for one class of patients it was in fact harmful. It did not start out intended as research without benefit; we expected that there would be benefit.
Mr Wessenger: You expected that it would be beneficial to the patients. Thank you for clarifying that.
The other thing I would like to indicate to you is that clearly the intention of this legislation is not to in any way affect the existing law with respect to the matter of research, and if clarification is needed, hopefully that clarification will be made. Thank you.
The Chair: On behalf of the committee, I would like to thank you, Dr Schwartz, Dr Tucker and Dr Tator, for coming and giving your presentation this afternoon.
Dr Tucker: Thank you for the opportunity.
The Chair: Mr Poirier.
Mr Poirier: I would just like to inform my colleagues, especially in government, that the Liberal Party has just issued a press release, thanks to a brown envelope under the door, where we have the complete list of the legislative priority-setting exercise for the government in power. You will be glad to know that the advocacy bill is number eight in the list of priorities and that the number one priority is the Ontario Labour Relations Act amendments. It says " controversial overall of act, urgency to not have debate on this item carry over into 1993." This for your information, sir. Number eight priority, our bill.
Mrs Cunningham: Mr Chairman, I have an announcement. Canada won the hockey game by shootout. I thought you would like to know that.
The Chair: Good. Mr Poirier, would you like to table that document?
Mr Poirier: It is a public document. You will be able to get it for your perusal later on tonight.
The Chair: Thank you very much for that information.
The committee adjourned at 1621.