AD HOC GROUP ON ADVOCACY, CONSENT AND SUBSTITUTE DECISION MAKING
BURLINGTON COMMITTEE FOR THE PHYSICALLY DISABLED
ST MICHAEL'S HOSPITAL ETHICS COMMITTEE
ALLIANCE FOR LIFE (ONTARIO) INC
ALZHEIMER ASSOCIATION OF ONTARIO
CONTENTS
Monday 9 March 1992
Advocacy Act, 1991, Bill 74, and companion legislation / Loi de 1991 sur l'intervention, projet de loi 74, et les projets de loi qui l'accompagnent
Ad Hoc Group on Advocacy, Consent and Substitute Decision Making
Carolyn Shushelski, member
Jean Suttie, member
Barbara LeBlanc, member
Emily Phillips, member
Harriet Wolman, member
June Beeby, member
Deborah Wall-Armstrong, member
Burlington Committee for the Physically Disabled
Anne Marsden, chairman
St Michael's Hospital Ethics Committee
Dr Gerald Wong, chair
Linda Prentice, member
Dr George Webster, member
Shelley Walkerley, member
Lorne Martin
Scheduling of Presenters
Dying with Dignity
Donald Elliott, president
Marilynne Seguin, executive director
Alliance for Life (Ontario) Inc
Regina Weidinger, national board member
Jakki Jeffs, executive director
Alzheimer Association of Ontario
Peter Trueman, representative
John Ellis, executive director
Wayne Gay, board member
Jo Peterson
Ontario Nurses' Association
Mary Jane Christianson, president
Glenna Cole Slattery, chief executive officer
Noelle Andrews, associate director, government relations
Lesley Bell, assistant director, government relations
STANDING COMMITTEE ON ADMINISTRATION OF JUSTICE
Chair / Président(e): Cooper, Mike (Kitchener-Wilmot ND)
Vice-Chair / Vice-Président(e): Morrow, Mark (Wentworth East/-Est ND)
Carter, Jenny (Peterborough ND)
Chiarelli, Robert (Ottawa West/-Ouest L)
Fletcher, Derek (Guelph ND)
Malkowski, Gary (York East/-Est ND)
Poirier, Jean (Prescott and Russell/Prescott et Russell L)
Sorbara, Gregory S. (York Centre/Centre L)
Sterling, Norman W. (Carleton PC)
Wessenger, Paul (Simcoe Centre/Centre ND)
Wilson, Jim (Simcoe West/-Ouest PC)
Winninger, David (London South/-Sud ND)
Substitution(s) / Membre(s) remplaçant(s):
Akande, Zanana, L. (St Andrew-St Patrick ND) for Mr Morrow
Coppen, Shirley (Niagara South/-Sud ND) for Mr Morrow
Mancini, Remo (Essex South/-Sud L) for Mr Sorbara
Sutherland, Kimble (Oxford ND) for Mr Chiarelli
Also taking part:
Carr, Gary (Oakville South/-Sud PC)
Fram, Stephen, Ministry of the Attorney General
Clerk / Greffier: Freedman, Lisa
Staff / Personnel: Swift, Susan, Research Officer, Legislative Research Service
The committee met at 1028 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.
The Chair: I call this meeting of the standing committee on the administration of justice to order. I would like to give a reminder to the committee members that we have been given permission from the House leader's offices to meet on Tuesday, March 24, and Wednesday, March 25, so we will be sitting those two extra days.
AD HOC GROUP ON ADVOCACY, CONSENT AND SUBSTITUTE DECISION MAKING
The Chair: Good morning. For the record, could you please identify yourselves one at a time and, as it is such a large number, could you please speak into the mike. As you know, you will be given a half-hour for your presentation. The committee members would appreciate it if you would keep your presentation to about 15 minutes to allow time for questions and answers from each of the caucuses. Could you please identify yourselves and then proceed.
Ms Shushelski: My name is Carolyn Shushelski, and I will be the spokesperson for the group; however, we would like each of us to be introduced to the committee. Perhaps each one of us could just introduce herself and give her designation and the group she represents.
Mrs Suttie: I am Jean Suttie, associate provincial
director, Victorian Order of Nurses.
Ms LeBlanc: I am Barbara LeBlanc, Ontario Medical Association.
Mrs Phillips: I am Emily Phillips, president-elect, the Registered Nurses' Association of Ontario.
Ms Wolman: I am Harriet Wolman, chairman of the public affairs committee of the Ontario Long Term Residential Care Association and managing director of a retirement home.
Mrs Beeby: I am June Beeby, executive director of Ontario Friends of Schizophrenics. I am also the mother of a suicide schizophrenic.
Ms Wall-Armstrong: Deborah Wall-Armstrong. I am the owner-representative of a nursing home in Barrie. I am also a vice-president of the Ontario Nursing Home Association.
Ms Shushelski: This ad hoc group is a group made up of health care providers and family-based advocacy groups. We came together to discuss mutual concerns respecting the proposed legislation on advocacy, consent to health care and substitute decision-making.
The group represents the Ontario Friends of Schizophrenics, the Ontario Hospital Association, the Ontario Long Term Residential Care Association, the Ontario Medical Association, the Ontario Nursing Home Association, the Ontario Registered Nurses' Association of Ontario and the Victorian Order of Nurses of Ontario.
We are among the principal organizations which will be involved and most directly affected by the implementation of this legislation. We do support the underlying principles of the legislation. We appear before you today to express our shared concerns about the proposed legislation as it is written, and to request that it be deferred pending realistic amendments being made. We ask you to slow down and urge you to give it the time and attention it deserves.
The Consent to Treatment Act is an attempt to protect the rights of a mentally incapable person with respect to consent to treatment and mental competency determinations. However, we believe there is an equally powerful competing principle, which is the right to timely and appropriate treatment. Our fear is that the latter principle will be compromised if this package of legislation passes as drafted. These bills, if implemented, may interfere with assessment, diagnosis, basic care and humane treatment, causing unnecessary pain and suffering. We believe the right to timely health care is an inherent right to be protected, not undermined.
The appropriate role of the family in making consent decisions on behalf of their family members who may be incapable will be delayed or displaced. Relatives, health care practitioners, advocates and substitute decision-makers will be pitted against each other unnecessarily because of this legislation. Rather than establishing a community of interest and support around the mentally incapable person, the legislation entrenches a series of adversarial relationships among all those I just mentioned. We have tried to work with the government to ensure that the legislation will be practical and not hinder patient care and treatment. In our opinion this legislation is anything but practical and manageable. In fact, it may place patients at risk of harm, this being a result of procedural delays in receiving care and treatment.
Most of the members of the ad hoc group have already appeared before the committee. We have each clearly stated our concerns. Now we understand that the government has drafted amendments to the legislation. We have requested that we be given the opportunity to review these amendments. But to date the government has not made the amendments public. This refusal to share information has made our work more frustrating and less effective than it would have been had we known the substance of the amendments.
The government's failure to table them in a timely fashion has meant that a certain amount of committee and interest group time plus money has been wasted. As well, the credibility of the consultation process on these bills has to be called into question. A patient should have the right to make an informed decision about proposed treatment. We believe that a mentally incapable person should have the right to be assessed, to have a diagnosis established in respect of his or her condition and to receive basic care and humane treatment without delay in all circumstances. We believe that if the bills are passed in their present form mentally incompetent patients will be denied this basic right to timely treatment.
The definition of "treatment" in Bill 109 is too broad. It is so wide that it would include any physical interventions with the patient. As written, the legislation would prohibit even routine procedures such as the application of a dressing or even taking a temperature. We have identified several reasons why delay to treatment will occur. These are as follows:
The right to an advocate and a board hearing: If the medical situation is not a clear-cut emergency as defined in the act and the patient exercises the rights set out in the act, most particularly those set out in section 10, treatment of any kind will have to be deferred.
No treatment without consent: If the medical situation is not a clear-cut emergency as defined in the act, and a substitute decider is not immediately available to consent to the treatment, treatment of any kind will have to be delayed. Establishing who the appropriate decider is in each particular situation and searching for any appropriate supporting documents will cause delay. Treatment will be delayed in emergency situations. In an emergency situation, delays will occur when health practitioners must determine whether the incompetent person has expressed wishes to refuse the particular emergency treatment or has instructions in a power of attorney for personal care to refuse the emergency treatment.
This legislation will also apply to the community setting. For example, if a health care practitioner visits a patient at home in the country and finds the patient is incapable with respect to consenting to treatment, all of the requirements of the legislation will have to be observed. The only difference is that the delays may be longer.
It is our understanding that the public trustee has estimated that to serve even 25% of the number of people who may need assistance, his clientele would jump to 150,000 people, which is an 800% increase. He further suggests that his budget would have to be increased from $6 million to $48 million. This is but one of the cost implications involved in implementing the legislation.
The public guardian and trustee must have the ability to process cases expeditiously. Although the ad hoc group does not believe it is the best solution, the legislation as written will necessitate that the office of the public trustee be given a mandate which includes 24-hour, seven-days-per-week availability.
The criteria related to emergency treatment are unrealistic. For example, the proposed act permits a health practitioner to administer emergency treatment to an incompetent person only if "the person is likely to suffer serious bodily harm within 12 hours." What if the harm results in 13 hours?
The ad hoc group has concerns regarding linkage between the Advocacy Act and the other two pieces of legislation. Of particular concern is the possibility that the requirements imposed by the legislation will overwhelm advocates' time and impede their ability to address more critical issues. Advocates must have the necessary time and resources to address the needs of those who are most vulnerable. The group believes very strongly that it is extremely important for the Advocacy Commission, as a public entity, to have clear public accountability. The powers, responsibilities, qualifications and accountability of individual advocates require clarification.
Please consider what will happen from a practical point of view if this legislation passes. Some health care providers may endeavour to follow it, refusing to give treatment until they are satisfied all the provisions of the legislation have been followed. Others may ignore it due to its complexity or because they are unwilling to delay all forms of treatment while the technical requirements of the legislation are determined and then followed. Some may be immobilized by its complexity. The end result is going to be a tremendous confusion, especially for the patient.
Given today's fiscal realities, this government would be bordering on irresponsibility to push this legislation through without a cost analysis of its impact on the public, government, providers and institutions. Any initiative must be accompanied by a budget. The government has been asked for a full cost analysis and none has been forthcoming.
We conclude by restating that everyone here today is commenting on bills which apparently have been amended. In its present form, the legislation is potentially dangerous, unmanageable and unworkable. It must be redrafted and rethought.
Thank you very much. We would be pleased to answer any questions you have.
Mrs Sullivan: I appreciate the efforts of this group to come before the committee, first of all, but also to work in a consultative manner with one and another of the organizations represented here.
You may recall that close to the end of the last government, there was a document that described the elements, the principles, of consent legislation, and that document was sent out for public discussion. When the government changed, the next action of course was the appearance of these bills in bills.
You have indicated that you feel the consultative process relating to the development of these pieces of legislation was flawed. Could you describe for the record what kind of consultation you have actually had with the government relating to these three pieces of legislation and the interrelationship between the three pieces of legislation?
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Ms Shushelski: Each individual group may have had a different form of consultation. My understanding is that these three pieces of legislation, as we see them -- first reading and second reading bills -- were indeed the first indication of the draft legislation we had seen. Prior to that, the Ministry of Health had actually sent out a document that related to the various principles, which we did respond to. I think most of the groups had the opportunity to give comments on that.
Prior to that, the only other consultation I am aware of is the Fram committee. If you recall that many years ago, it certainly did not have full representation from all the groups at this table. I believe the Ontario Hospital Association and the Ontario Medical Association were the only two on that group. Certainly there was not necessarily a consensus on all issues. That is from my perspective, but I think June Beeby from the Ontario Friends of Schizophrenics may want to address that issue.
Mrs Beeby: I can say that Ontario Friends of Schizophrenics has never had the opportunity to sit on any committee dealing with the laws, yet we are the primary care givers of some of Ontario's most vulnerable citizens, severely disabled schizophrenics. We asked but were not allowed to sit on the Weisstub committee. We were allowed to present a brief and we felt our brief was given short shrift. We felt they did not understand it, if they read it. We also were not represented on the Fram committee.
We heard nothing about the advocacy laws being written and were quite shocked to suddenly find ourselves with the acts in second reading. We felt like we had a gun to our head, and we had an empty gun, because we have no legal resources. It is only thanks to the Ontario Trillium Foundation that we were able to respond at all. We were completely ignored by any of the committees planning legislation that would affect some of Ontario's most vulnerable citizens, severely ill schizophrenics.
Mr Poirier: Looking at some of the comments, I guess you know by now that we are very sympathetic to your concerns. One of the points you raise on page 2 is, "We understand that the government has drafted amendments to the legislation." I remember, at the beginning of our committee work, I asked that question of the parliamentary assistant. We were answered no, but now that we have had a two-week break, can we ask the parliamentary assistant again what kind of progress has been made by the government to address amendments -- if I can get the parliamentary assistant's attention. I would like to ask him again, since we had a two-week break, to get some information about whether amendments have been drafted, or if there are addenda to have some amendments come forward so that these groups who have been on the outside, according to what you have just heard, can participate in looking at the amendments, or what you plan to do with the laws.
Mr Wessenger: I think it was made clear by the minister when she spoke to this committee the areas she felt should be flagged for considered amendments. One of the areas was emergency situations. I think those areas were well flagged. Since that time, of course, officials in the ministry have been doing consultations with various groups, discussing with them the general principles of the legislation. As of yet there have been no specific amendments set out; we are still in this hearing process. The whole process of this hearing is to hear from groups and hear their concerns. When we have heard from all groups, then the committee process can continue to work and the appropriate amendments will be prepared after we have heard from all groups.
I think it is fair to say that the existing legislation is not cast in stone. The minister has indicated she will be looking for the input to determine the appropriate amendments to come forward.
Mrs Sullivan: We heard from the parliamentary assistant to the Minister of Health that there will be amendments to one of the three health bills that are put forward and that we are discussing. There are two other interrelated pieces of legislation. These groups have indicated to us that indeed they believe, and I concur with them, that the only way to proceed is to withdraw these bills and redraft them, because they are unworkable, impractical and costly in their current form.
I wonder if we can have an indication from the government members that the government also believes this is an appropriate thing to do, given that not only this group of organizations that have come before us in a consultative manner to describe what their experience is and what their projections of the effect of these combined legislations would be, but many other groups have come forward saying exactly the same thing: Whether they are advocacy groups, health care providers, family care givers or agencies in a community, every single organization has singular and difficult problems with this series of legislation.
What we would like to see and what these groups and many others would like to see is that this forum be used as part of the public consultation and that it go back into a complete redraft to come up with needed and workable legislation. Can we have any kind of assurance that this kind of approach would be taken by the government?
The Chair: Does anybody choose to respond?
Mr Malkowski: I would like to reply to that comment. We are in the consultation process now. What we are doing is listening to groups. This consultation has been happening for many years. Consumer groups have been consulted and other groups have been consulted as well. We have heard from three different governments. The Liberal government, the Progressive Conservative government and the NDP government all say they support in principle that these bills be drafted.
We have heard from the Ontario Psychiatric Survivors' Alliance, from the Ontario Advocacy Coalition and from other groups saying that this legislation should go through. I think we need to be fair to all groups. They have concerns and that is why we are here: to hear the concerns and consult with the groups.
Mrs Sullivan: Will you withdraw this legislation and go into a redraft?
Mr Malkowski: We are going to continue to consult and continue to listen. When the public hearings are finished, we will discuss and talk very directly about making amendments. Just for clarification, we will make recommendations after the discussion is finished.
Mr Winninger: I would like to speak in connection with Bill 108. We too have listened very carefully to the helpful, positive, constructive suggestions made by the many deputations and we are going to consider carefully how those contributions might make our legislation better, but not until we have heard from everyone.
Mr Sterling: I would like to thank the coalition group for stating at this point in time its concern particularly about the process. One of my concerns is that we have had a lack of presence of ministers in this committee who are responsible for the legislation since they made their opening statement. While parliamentary assistants can assist ministers, it is still the minister who must make those decisions. We have not seen the Minister of Citizenship here, we have not seen the Minister of Health here and we have not seen the Attorney General here to listen to any of the suggestions that have been made. I would suggest that this legislation is being considered in a considerable vacuum on the government's side at this time and that concerns me. It concerns me when I couple it with the lack of media coverage of these hearings, for whatever other reasons there might be, because there are other issues that are more interesting to the public.
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The third part that I am very much concerned about is the leadership in carrying this legislation being put in the hands of the Minister of Citizenship. Quite frankly, this legislation impinges more on the health care system than any other ministry in this government, and it is my view that the Minister of Health should have been the lead minister with regard to this legislation because that is where the practical effect of this legislation really lies.
You may know that my party has put forward amendments. I hope you have received those amendments from the clerk of this committee, as was agreed in this committee before. After two days of hearings, we put forward --
Mrs Beeby: We have not received them.
Mr Sterling: You have not received them? I will ask the clerk later why you have not received those amendments. We have put forward three amendments to this bill because we saw an immediate problem with regard to those parts.
One of the problems I have -- and I have heard rumours that the government is considering scrapping Bills 108, 109 and 110 and proceeding with Bill 74 -- is that the government is getting the impression that there is little opposition to Bill 74 at this time, and I would like any of you to comment with regard to Bill 74. I know it is entwined with Bills 108 and 109, but it seems that everyone gets tied up in specifying the problem with Bill 108 and 109, without referring to Bill 74.
Ms LeBlanc: Actually, I think that is a big problem, and if you look back to the consultation, it really is Bill 74 that sprang from nowhere, if you will. There was a discussion paper on principles respecting consent and there was the Fram commission, so there was at least some background. Bill 74, which is ostensibly the centrepiece, has had no preliminary information, and that has made it doubly difficult. I think one of the things we as a coalition have come to realize is that this has been put forth as a package and it should fall as a package.
Mr Sterling: Can I ask a supplementary question? I am sorry, Jim. In listening to this and in dealing with Bills 108 and 109, most of the criticism seems to fall around three or four or maybe half a dozen sections of those bills: the assessments in Bill 108, who can do an assessment, the complexity of doing an assessment, what is a valid directive, what is not; the definition of treatment in Bill 109, whether diagnostic treatment should or should not be included; the section about the age of the young people.
In trying to continue to be constructive, from our party's point of view, we are reluctant to let these bills go. Notwithstanding the considerable number of problems we see with them, if those six or eight or a dozen sections were remedied or if there were constructive amendments put forward by the government, do you think that after adequate consultation, following that, the health care community could work to try to make this legislation go ahead?
Ms LeBlanc: That is, I think, the hope of all of us.
Ms Shushelski: Perhaps I could just make one comment on that as well. What we hope is that whatever amendments are proposed or whether the bills are withdrawn, whatever form it takes, the one aspect I think we all agree on is that we need the time to consider it. I think this legislation is going to have such an impact on health care for Ontario, and for such a long time, that we have to make sure it is correct. We all have to live with it permanently. What I suggest is that what we could all agree on is that we need an adequate consultation period to determine what the amendments are, to make sure they are workable.
Mr J. Wilson: Thank you very much for appearing today. Although I never want to try to outdo Mrs Sullivan, if you read the debates in the House on second reading, as Health critic I certainly made it clear at that time that we felt the bills should have been withdrawn and in fact redrafted. It is nice to see the Liberals are with us here this morning to reaffirm that.
Subsequent to that though, what Mr Sterling is getting at is that he has managed to convince me somewhat that perhaps we could, with some substantial amendments to Bills 108 and 109, eventually live with that legislation if we could get the government to listen and withdraw Bill 74. As Mr Sterling has also pointed out, the government is going in the exact opposite direction to what our thinking is and to what I believe the vast majority of witnesses before this committee have told us. On that I want to ask you a question, just as a group that has taken the time out to come to this committee.
From your presentation I think you would agree that if the government has amendments hidden away somewhere, it should have brought them forward by now. Do you feel it is a waste of your time to come here and debate matters that the government says it has already got in the workshop, fixed, but will not release out of the workshop to let us know? This government, in all committees, seems to think this is where it does its public consultation rather than prior to drafting the legislation. We have spent some 18 months now trying to tell them how Parliament best works. Do you feel it is a waste of your time and that you are not being heard? It is a pretty tough question.
Ms LeBlanc: I think it is fair to say.
Ms Shushelski: I think the group would agree that we feel we are wasting time. We could give far better information to you if we had the most recent thinking. Certainly this would appear to be a waste of time.
Mr J. Wilson: Thank you. I just wanted to clarify that, because it would be interesting to hear what the parliamentary assistants tell us in that regard on the amendments.
The Chair: I remind the government side that you have about seven minutes. I have had four people indicate they would like to ask questions. Mr Malkowski.
Mr Malkowski: I would be interested in your clarification. In your submission on page 4 when you are talking about the powers, qualifications and accountability of the individual advocates, I would like to hear some clarification on that point. Do you have any specific recommendations where you could see improvement?
Ms Wolman: I will just speak briefly, but not totally on that issue. Representing a group of 25,000 frail seniors, but not all of them physically challenged and certainly not all of them mentally incapable at this point in time, although some of them may be in a very frail position, the composition of people that is being recommended for the Advocacy Commission in my view would not necessarily be knowledgeable enough or familiar enough with the needs of our frail elderly population to be able to deal with them in a certain situation.
In addition, if we read the bills the way they are presently worded, with 500 retirement homes across this province, in order to have ready access to an advocate if needed, if the legislation is followed to the letter, the way it is presently written we would have to have a permanent onsite advocate in every retirement home. We would have to have an onsite person there 24 hours a day to protect the people living there, with whose care we have been entrusted. We have a lot of concerns about both the cumbersome way that would evolve, the cost, and the fact that the advocates may not be trained in the areas in which they are needed because the act is so broad.
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Mr Malkowski: In principle, the Advocacy Act is to protect vulnerable people from abuse, neglect and exploitation. Would you support that principle?
Ms Wall-Armstrong: That has been reiterated many times. There is no question that we all support the basic principle, but we all recognize that what is being forwarded may be more cumbersome than what we are working with right now.
Ms Shushelski: Jean Suttie from the Victorian Order of Nurses would just like to comment. She got bypassed.
Mrs Suttie: I would just like to comment from the perspective of VON. As many of you may know, we have about 4,000 staff working across the province on a daily basis, and cover over 90% of the population. However, we are not contained in a facility. We are very much out on the back roads of the communities and often run into some difficulties vis-à-vis the availability of assistance. We need some clarification and some thought given to the availability of the advocate if this legislation is going to go forward. From our perspective, we would like to see some consideration given to the community in general because we do have a lot of uncontrolled variables which are very costly to us, both from a human resource and a financial perspective.
Mr Fletcher: Just two quick questions. A lot of people have been coming and saying, "We like the bills, some of them, but we should perhaps implement the Advocacy Act first, let it run for a couple of years, get it going and see what bugs there are, and then start implementing the other pieces of legislation." As I said, this is coming from other groups. I was just wondering if there is anyone who has thought about that. Or is it just a total rewrite of everything?
Ms Wall-Armstrong: I think the concern has been that this was presented as a package. It is difficult for us to separate each one of them. I know our organization and the Ontario Nursing Home Association have said, "Whatever you're going to be implementing, in doing so, we do need an opportunity." One of our suggestions was a pilot project on it, because if any of it is implemented province-wide, we anticipate there is going to be some difficulties with it.
I think many people sitting up here in this group are saying, "We all need an opportunity to work out our own kinks, and no matter whether you're going to bring forward the whole package or just part of it, you're going to need a pilot project so that we can all assess the impacts on it." But we have been presented with it as a package. For us to try to take it back -- it has been so interrelated. Our focus has been as a package. If you want us to look at them individually, then let us know and we can get back to you on that and see if that is workable.
Mr Fletcher: The other point is that you say you have heard about the government making amendments already. Where did you get that information? Where did you get this idea that we have made amendments?
Ms LeBlanc: Certainly we have had discussions with a number of different sources and, as Mr Sterling mentioned, Frances Lankin has been fairly forthcoming in saying that she is prepared to at least put forth amendments where needed, and I think some of the staff people have certainly made it clear that they are working towards amendments now.
Mr Fletcher: That the minister would say that she is clearly willing to put forth amendments means she has already made amendments?
Ms LeBlanc: From some of the staff people in the ministries, we have learned that amendments at least are under way.
Mr Winninger: I do not want you to go away misled by Mr Sterling's reference to a rumour that Bills 108, 109 and 110 are being withdrawn. I think that is a rumour circulating among the Tory caucus members. But there is more truth to the rumour that Mr Sterling has withdrawn Bills 7 and 8. I would also say that ministries can recant. The members of the opposition well know that. The ministers read Hansard. The parliamentary assistants are here on the committee to bring back your thoughtful suggestions to the ministers.
We also have competent counsel, Mr Fram, sitting behind me and other counsel for the other two ministries involved, all of whom are listening very carefully to your suggestions. My question is, do you not think that the advance medical directives and the powers of attorney for personal care will actually help to facilitate the kind of treatment the patients want, rather than operating in the current vacuum, if you will, where health care practitioners conclude often they have consent to treat when they do not?
Ms Wall-Armstrong: If you could be assured that the public would be well educated before coming in and that its use would be widespread, but usually what happens, from a practical concern, is that the public is not aware enough about these pieces of legislation, and it is only getting dealt with at a point in time when people are in a deteriorated health condition. Those are our concerns, and when it gets to that and it is not an emergency situation, we can deal with it where we have got a terminally ill patient who is not cognizant, and it takes four or five months to be able to give them proper, adequate palliative care. I would like to see those things change, but at the same time I do not want to scare off even the people working in our environment right now by new legislation coming in. They are used to the environment they are working in.
Mr Winninger: I will give my remaining time to my colleague.
The Chair: There is no remaining time. On behalf of the committee I would like to thank your ad hoc committee for coming and giving your presentation this morning.
Mr Sterling: When I introduced our three amendments some three weeks ago, I had asked the Chair to forward those to all of the groups that had presented and were going to present so that when groups came in front of the committee, they would have the position of our party at that particular time. I would just ask if that has been done, because there was some negative response when I was making that statement.
The Chair: I will allow the clerk to respond to that.
Clerk of the Committee: My understanding was that they were to be provided to all groups, and they were provided to all groups prior to their presentations. I just sent a memo to my office now that they are to be faxed to the remaining groups this week for their presentations.
The Chair: To allow time to arrange the seating for our next presenter, this committee stands recessed for about two minutes.
The committee recessed at 1108.
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BURLINGTON COMMITTEE FOR THE PHYSICALLY DISABLED
The Chair: I call this committee back to order. Our next presenter is from the Burlington Committee for the Physically Disabled. Good morning. As you know, you will be allowed half an hour for your presentation. The committee would appreciate it if you keep your comments to about 15 minutes to allow time for questions and comments from each caucus. Could you please identify yourself for the record and then proceed.
Mrs Marsden: My name is Anne Marsden and I am chairman of the Burlington Committee for the Physically Disabled. Before I begin, I would just like to give a brief rundown of the adventure I have had trying to get in here this morning, which I think will be an excellent analogy of Mr Jim Wilson's comments during the last presentation.
Before I set off, by the way, I should introduce my son, Dale Marsden. He is job-shadowing today -- the day in the life of an advocate -- and he will be reporting back to his school.
This morning I received a call from Marilyn Heintz, president of People First, who has accompanied me here today, to say that we were going to have a little bit of difficulty getting here because Queen's Park was surrounded by trucks and they were not letting anyone in. We took a detour and came by Highway 5. As we approached the trucks I held up my disabled pass and the trucks kindly welcomed me with a blast from their horns and opened up so we could come through.
Then we were met by the person who is an employee of this government, I presume, whose job is to keep undesirables out of Queen's Park. He stepped in front of my van and said, "No, you can't come in." So I said: "Why not? I have a disabled parking permit, I have been told there is disabled parking right outside the front door and I have an appointment before the administration of justice committee. They have invited me here to speak on Bill 74." He said, "No, you can't come in, there's no parking." So I said, "Excuse me sir," and then I did what I am always used to doing, I drove right through the barrier. He came running after me. There were barriers up in the handicapped parking spot and my son, who tends to be useful at times, went out and removed the cones from the handicapped parking spot. Along comes the government employee meant to keep the undesirables out of Queen's Park, "You can't park there." I said: "Excuse me, sir, I have a disabled parking permit. I can park there."
I think that is a perfect analogy of what you were saying, Mr Wilson, that on one word you say, "Please come. We are doing everything to make equal access for the disabled," but you just try and get here and you see how many barriers are going to be put in your place. But as I said, I do not let barriers stop me so I am here today. I am going to be speaking from the heart because I did not prepare anything on purpose so you know it is from the heart, and I am going to be drinking lots of water.
First of all, I should let you know why I feel I have some credibility to sit before you today and speak on this bill. I was born in England, a very healthy baby girl, walked at nine months, very happy little girl. At four years of age I received a diphtheria, polio and tetanus immunization. From that day on, it was a different story. During my youth, I had 13 lots of major surgery so I am well aware of why we need advocates within hospitals, as a child. I went to an able school. I became the school tennis champion. I was the only disabled person in that school. At 13 I threw away my braces because I no longer liked them. They were ugly.
During that time my mother was diagnosed paranoid schizophrenic. She was sent to the local asylum. During that 10-year period she received at least 100 electric treatments. She also received several of the insulin coma treatments. My mother, bless her heart, has survived. She is now in Halton Centennial Manor, where recently I noticed a change in my mom's behaviour. I could not understand what was happening and found out her medication had been mixed up. Instead of the medication she was supposed to be on, an antihallucinatory drug, they had given her a diabetic medication. Now you know why we need advocates within the nursing homes.
These last four years I worked for a hospital. I have been very active in patients' rights, a member of the patient relations committee. The last four years, up to January 1991, I went through the most distressing and horrendous obstruction and harassment to put me on long-term disability that you could ever come across, and it is all documented.
In January 1991 I succumbed to the pressure and went on long-term disability, served a formal Ontario human rights complaint and also put forward a Workers' Compensation Board claim for occupational stress, well evidenced. My experience within the hospital shows me why we need advocates within our hospitals for patients. I myself worked in an office which underwent $100,000 worth of renovations including new carpets, new pots, silk plants, the lot. When I went to the Chedoke site of this same hospital I was not even allowed access up the stairs, nor were the patients who were in that chronic care and rehab centre. They did not have an elevator. I tried unsuccessfully to change that. They would not even accept me as a part of the consultation process.
When it was brought to people's attention: "That's life. There's no money for elevators." I said, "What about the money for the $100,000 renovation to the new office I've just sat in?" Now you know why people with disabilities need advocates so we can move the barriers. As you can see, I am very much in favour of there being advocacy. My problem comes, however, with the experiences I have gone through over the last year.
Oh, sorry. I missed one other case where I have used advocacy services. During this last summer, my child went into severe emotional trauma and out of control. We could not understand what was happening. We knew it was probably something to do with the anxiety that was going on in the home. His mom was not her normal self. She was not going to work. She was getting all these phone calls. She was concerned that we would be losing our house because she no longer was able to provide 50% of the income.
We had many difficulties with him. We tried to go and find mental health resources to help this child, because nobody could. Our family doctor says we cannot. The children's assessment and treatment centre, which is our local mental health centre for children, says no, that we cannot even put him on the waiting list; it will be 10 months. This child was in extreme difficulty. One day he went totally out of control. We did not know what to do with him. We tried to get family support, anything that would help us understand what was happening to this beautiful child, which he is.
One day I called my family physician and I said: "He's totally out of control. What can we do?" He said, "Do you want me to call the children's aid?" So I said, "Why would we call the children's aid?" He said, "Because the children's aid will find the necessary medical help that Jason needs." So I said, "Fine, call the children's aid."
Children's aid came and took my son. They told me it did not matter what I wanted or what my doctor said; they held the power and they were taking my son. This was in response to a call for help to deal with a child's problems. I was left powerless. If you know what it is like to sit in a living room and watch your son being walked out, you know what it feels like to be absolutely powerless and in the grips of a piece of legislation.
I was put in touch with the child and family advocacy people. What happened was that the worker came down and told us that if we did not want to go before a court, where our son would be kept for a minimum of three months, we would have to sign a temporary order putting him in the custody of the children's aid. We would have to sign it. We debated it. We were very frightened. So we signed an informed consent to put our child in the children's aid.
The home he went to had 11 children in it. We called the children's aid. We said, "How can my son get the attention he needs in a home with 11 children in it, especially when, from what we understand from the children's aid, they are all people with major behavioural problems?" They said: "No, it can't be so. It's against the law. Can't have more than five." I said, "We are telling you there are 11 children in there." "No, no, no."
She checks it out and comes back to me. "Yes, well, she's only got five foster children, but she's got six respite children, too, severely disabled children who go there." I said: "You mean 11 children, six of them with severe disabilities, looked after in one foster home? What kind of attention is this child of mine getting who is in severe emotional difficulties?" She says: "Don't worry about it. It's okay. Everything is under control."
My son then informed me that he was sharing a bedroom with a girl. I said, "Impossible." I phoned the children's aid. "Absolutely impossible. It's illegal to share a room with a girl." That night my son was moved from his bedroom to another room to share a room with a boy. I think you can get the picture of why we need advocacy within foster homes.
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I also had called the foster mother to let her know my son was hypoglycaemic and that this was thought to be one of the causes of his problems, because when his blood sugar drops he does not know what is happening to his body. The week he was taken by children's aid we found he had eaten a full tub of Betty Crocker icing sugar. We only found that out because it was downstairs and it was my other son's birthday and we went to ice his cake and it was gone. We asked Jason. He had eaten a full tub of Betty Crocker icing sugar, which to us accounted for his out-of-control behaviour.
I phoned the foster mother and I said: "My child is hypoglycaemic. Can you please ensure he gets a snack midmorning and midafternoon and that he goes to school with his lunch and that he has sufficient to have a morning snack, a good meal at lunchtime and an afternoon snack, and no sugar." My son went to school the first day with one sandwich and a package of Lifesavers. My son got into extreme difficulties and was again suspended by the principal. My son was suspended by that school three times in three months.
The principal was talked to by my doctor, who told her he was hypoglycaemic. He told her not to confront him in a confrontational manner. He told her that in no way should he be grabbed or anything like that because he had been traumatized by an adult. She grabbed him by the arm. He responded by kicking her because he felt he was in danger, and he was suspended the third time. He ended up suicidal at that time on my roof. You now have an indication why we need advocates within the school board system too.
We wanted to move my son over to another home, some people from our church who were cleared as foster parents. They had no children in their home. For three days we had to beg -- the legislation provides for this -- that they move our child over to this other home. No, they would not move our child over. We called the child advocacy people. The children's aid told us there was no way it would listen to the child advocacy people; it had the power, even though it is in our legislation and it is our right to move our child over.
They would not even let me tell my son there was somebody else who wanted him. We explained that his self-esteem is so low and we would just like to show that this family really wants Jason. We said, "Can we please tell him that the Teklenburgs want to have him in their home even though they know him and they have heard all about his behaviour etc?" The children's aid said no. We were not allowed to tell our son that somebody else wanted him.
Finally, after three days, they released my son to another home. We then finally got an appointment with a child psychiatrist, which was supposed to be the purpose of children's aid taking him in the first place. On the advice of this psychiatrist, they released him back to our home. At this point I went out to the community and fought very hard to get funds for a family support worker to work with our family to show us how to deal with our son when he went out of control and for a behavioural therapist to help Jason. By the way, I should say that when I went forward to this committee the children's aid came against us and recommended that we not have them.
The local mental health association, if that is what you want to call it, the children's assessment and treatment centre, told us that all children's aid had to do the day my son was taken into care was call it and it would have my son as an appointment within the first month. The children's aid knew this; it did not make the call.
Finally we got this family support worker. In April my son was taken; August was the first appointment with the family support worker. The family support worker came into my home and said "Hi," introduced herself, and then said, "I don't understand this," because she was under contract to CAS. She said: "I don't normally come into homes after children have been taken into care. My job is to come into homes and support the family before the child is taken into care." She said, "I'm normally paid through children's aid." So I said: "Well, can you answer me why, instead of taking my son, a family support worker was not provided by children's aid? It would have been far cheaper, it would have been far less traumatic on our family, and the legislation says the purpose of the children's aid is to keep families together."
I think you may well have got the point as to what I am talking about in terms of legislation advocacy, what is supposed to happen and what does not happen. I have many, many examples which I would rather share with you in private, if you so wish, of how our legislation has been utilized expressly opposite to the way it was intended to be used. Many examples. As I said, I would be delighted to share these with you in private.
Before you send Bill 74 or any piece of legislation on, I think you need to take a retrospective look. I should tell you that my professional background is quality assurance. In quality assurance you undertake studies to look at the problem. The study identifies what the problems are in order to be able to make recommendations to fix the identified problems. After you have ensured the recommendations have been put in place exactly as they were supposed to be put in place, you then reaudit, take another look, and see if the recommendations had any impact at all in changing the behaviour of the people involved or the situations involved. That is how you resolve problems. That is the end of the complete circle.
What I am saying today is that we have some problems with our legislation in this province. I do not particularly think the problems are within the legislation. I think the problems are with the people who believe they can thumb their noses at that legislation. That is very well shown to be correct. As I say, I can share privately with you exactly where these people have managed to thumb their noses at legislation and continue to do so. Thank you.
Mrs Sullivan: Thank you very much, Mrs Marsden. In your exposition of your personal and family association with schools, hospitals, medical care and so on you have indicated that you have dealt with many agencies in our own community, one of which was CATC, which, for Hansard, is the children's assessment and treatment centre. It is really a very fine agency. But as you have documented your experiences, you have given evidence that you see a particular role for advocates in relationship to schools, to hospitals, to nursing homes, the children's aid society, various social agencies in the community, health care, including a review of medical practice and in fact medical treatment.
What I hear you saying is that there is a requirement for a scope for a bureaucratic approach to advocacy, and I wonder where you would see the limits or the extent of the scope for advocacy, the kinds of training requirements that would have to be put in place on a publicly funded basis, and the funding needs to support the kind of broad-based advocacy services you are talking about.
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Mrs Marsden: I do not think I am talking about broad-based advocacy services. What I am talking about is making these agencies accountable. I do not believe setting up another commission along the same road as the Ontario Human Rights Commission is worth anything. It is just throwing another how many millions of dollars down the road. I do not believe that setting up an Advocacy Commission is the way to go. You have tried it in the past and it has failed miserably.
Mrs Sullivan: So what you are saying is that the role and the services provided within agencies, at the checkpoint role, should be expanded within the existing institutions and that in fact there is no need for a new bureaucracy.
Mrs Marsden: Exactly.
Mrs Sullivan: You see existing social and health care services expanded to take care of that advocacy requirement and to provide a protection for patient and consumer rights.
Mrs Marsden: I think, if there is accountability, you will find the dollar expenditure going down. For instance, my son, Jason, was sent by his doctor for a test for hypoglycaemia, a blood sugar test. If it had been carried out 18 months previous we would have avoided thousands of dollars worth of health and social services expenditures. He asked for this test after I had gone to him and said: "We see a relationship with Jason's anxiety, his craving for sugar and then his behaviour. Is there any kind of research which shows that?" I know I had suffered from chronic fatigue as one of the stress symptoms, and the research I did on that showed that stress caused me to burn up my sugar, and we know that sugar feeds energy.
I said, "Is there anything to do with the anxiety level, the requirement for sugar that the body is crying out for and his behaviour when the blood sugar drops?" He pooh-poohed that idea, but nevertheless, on a psychologist's request, he was sent for blood sugar testing. The doctor called me on Friday evening and he said, "I have never seen a blood sugar drop so quickly and so low in the space of one hour." He said one hour after my son eats sugar he is in extreme difficulties. So I said, "What do we do about this?" He said there is no cure and no treatment. It is controlled by diet.
He is talking to the paediatrician we talked to the week before. This paediatrician said, "Absolutely not." He said that now he was able to show him the test results and the paediatrician was now going out to research the literature to see what the connection was. My response to him was: "Isn't this interesting? Do you know how many community resources have been spent? A family support worker for the Marsdens, a behaviour therapist for my son, two and a half weeks in children's aid and I don't know how many appointments with the doctor." If there had been appropriate recognition of what my son's problem was there would be no need for any of that expenditure of those health care services or those social service dollars. This is what I am saying.
This is what quality assurance is: You identify where your problems are. I believe your problems are within the system. Having had 17 years in hospital management -- right now I know Gary Carr in a report said our health care costs $17 billion in Ontario. I can tell you from personal experience that health care does not cost $17 billion in Ontario. We give our hospitals $17 billion. What I am talking about is accountability to ensure that money is spent on health care needs.
Mr J. Wilson: Yours is a very interesting presentation because you took us through the need for advocacy services, but as I understand, although you identify needs in various systems -- the school system, children's aid and the medical-hospital setting -- you would not be in favour of setting up another bureaucracy, and that is a very interesting perspective. I think you were here for part of the coalitions, the OMA and nurses, that appeared preceding yourself. They talked also a little bit about how the family in this legislation could be somewhat ignored or certainly is down the list to be called in later, after the advocate. Have you given some thought to that? You talk about current legislation. Particularly I agree with you on children's aid; it is supposed to keep the family together, and it is not followed. This one, in my reading, specifically excludes the family.
Mrs Marsden: That is my point. There is legislation out which says the purpose of the child and family legislation is to keep a child in the family. Children's aid took my child out of the family when it was absolutely unnecessary at the cost to this province of community and social services dollars. What I am saying is, you can write whatever you like on that; it does not make a difference. The people who are in the hospitals, the people who are in the children's aid, the people who are in this government will do what they like. It is exactly the same as employment equity: $158 million to this country to integrate the disabled people. I try to come in response to an invitation and what happens? "You can't come in here. You can't park there." That is exactly the point.
Mr J. Wilson: I think you are a tremendous advocate, and your son should be very proud.
Mr Carr: I just wanted again to thank you for coming. I know we have spent some time. I saw Marilyn in the background there from People First. As a matter of fact, I was reading some of the replies on this bill from the people, and Marilyn will know we spent some time. She sits on one of my advisory committees, and we have gone through it. I just got the summary that we are going to circulate to our people, and I want to thank you very much for coming in and presenting that. I guess we will get a chance to get together afterwards as well.
It seems like the government has said it is prepared to go forward with this particular piece of legislation. I was wondering, with regard to Bill 74, if you would like to see something similar to a smaller-scale pilot project first, rather than proceeding. Knowing that the government has said it is going to proceed, and I think that is a given, are there any other recommendations you could make? I know you talked about how people could thumb their noses, but specifically is there anything else you would like to see incorporated?
Mrs Marsden: Talking about pilot projects, I would just like to give another illustration from our own community. This government has gone on record in the Legislature to say it supports long-term care. Part of those long-term care proposals are local community centres.
I do not know whether you are aware or not, but I did send a letter to Mr Cam Jackson asking him to raise it in the Legislature, so I assume you are aware of it. The purpose of the letter was to say our government is saying, "We are going towards long-term care, we are going towards community health centres." One in Burlington, at which I was a patient for a year and had every opportunity to evaluate, is a very cost effective centre doing wonderful work, the Joseph Brant health centre. What happens? The government comes up short with the executive director's wish list, if that is what you like, in funding for his hospital this year. What does the executive director do? He closes. He has said that that centre will close at the end of June.
My question to Mr Jackson to put to you people in the Legislature was, how can you allow a hospital to thumb its nose at you in terms of saying, "We are going to long-term care"? How can you allow a hospital to hold a community up for emotional blackmail? Because that community centre's closure does not just affect those patients in there. It affects me, it affects every single citizen and his or her tax dollar, because it is going to cost a fortune in health care dollars and community social services dollars to replace that $500,000 expense.
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What I am saying is, pilot project or not, it does not matter. If Joseph Brant closes down, that fine example, contrary to what you people have said is going to happen, what is the point of pilot projects? It is accountability in terms of what we have, what the laws of this land are, and making people accountable, and morally accountable as well as accountable according to the legislation.
Ms Carter: Thank you for coming and telling us your very moving story. I am really sorry about the parking problem. We will certainly have to look into that. You did not need that.
Mrs Marsden: I am used to it.
Ms Carter: Maybe Bill 74 comes a little nearer than you think to doing what you would like. Obviously, what we need is something that is independent of government, that is arm's-length, that can criticize the delivery of services. Somebody this morning was querying why it should be the Ministry of Citizenship and I think that is why, because that is the ministry that is concerned about people, people's rights, disadvantaged people and so on. This is a very consumer oriented bill. This is to help people.
There are two parts to it. The commission will listen to individuals, find out what they want and act on their behalf, but there also is another aspect, and that is systemic advocacy. In other words, if they find out that there is a whole class of similar problems occurring, that people are running into the same types of difficulty, they will say, "Well, there is a problem with this institution, or this way we do things" and they are empowered to do something about that and change the system. So the overlooking of institutions, seeing how they function, monitoring from the point of view of the consumer, that is part of what we are hoping to achieve with this act.
Of course, the one place where we do have advocates in place under the government now is the 10 provincial psychiatric institutions. I believe that this is something that has happened. First of all, they have been able to alert the families of inmates who are not being treated as they should be. Maybe the families are at some distance and they are able to come and find out and intervene. They have also helped by simply being there, being a watchdog, and fewer abuses have occurred because of their presence. I am just wondering what you thought about that aspect of it.
Mrs Marsden: You use the word "empowered."
Ms Carter: Yes.
Mrs Marsden: I prefer the word "enabled." I am very much empowered, but unless I am able to get into this building, I cannot respond to your request.
I really believe that rather than have another piece of legislation, we need accountability. To build accountability into the system, I think we need the public voice. It is time to open up those boardrooms to the people whom the centres affect. Remember, part of my job is working with the board. I was the board secretary for a hospital board and its committee, so I know how they work. I know who is on the board and why they are on the board. I believe they need to be opened up to the public. I believe the public, whose needs these people are meeting or are supposed to be meeting, are the people who should prioritize where the dollars go and what is a needed service and are the people who should be reviewing in terms of accountability.
This would also be very economical. For instance, in Hamilton there are three hospitals, three boards and three PR departments. Chedoke McMaster Hospitals have a staff of three in the PR department. I cannot figure out how that is a health care need. They all have foundation offices with their staff all running around in competition with each other and trying to raise funds. It really disturbs me when all I see in the Burlington Post is funds going out to Chedoke McMaster when I know CATC has a 10-month waiting list.
If you put in one regional, publicly appointed board and make it accountable, have an accountability factor in there too and put the proof of accountability in the hands of the people it affects rather than the people who are looking forward to some business from this particular institution, I believe it would be much more economical and that you would get a much clearer picture of what the needs are. I believe that will work far more effectively than a commission.
The Chair: Mrs Marsden, on behalf of this committee I would like to offer you the opportunity to submit --
Mr Fletcher: They had two each. They had their two.
The Chair: The point is that we are on a time limit, Mr Fletcher. Each caucus had five minutes on this.
Mr Fletcher: It did not seem like five minutes.
Mrs Marsden: Does Mr Fletcher wish to ask me a question?
Mr Fletcher: I will ask you one later.
Mrs Marsden: I will make sure it is on the record.
The Chair: As I was saying, this committee would like to offer you the opportunity to submit a brief if you have more to tell the committee. If you submit it to the clerk, she will distribute it to each of the committee members and they will review it.
As for the blockade this morning, I understand it caused some difficulty. The Sergeant at Arms and security offer their apologies. They will be looking into why an exception was not made on your part. On behalf of this committee, I would like to thank you for coming and giving your presentation this morning.
Mrs Marsden: Mr Cooper, I would just like to say I am not looking for exceptions. I was invited to this committee and I was told to park right outside the front door, so I was looking to accepting your invitation.
The Chair: The thing is that because of the blockade, there was a mandate sent down that no cars be allowed in. Our apologies again.
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ST MICHAEL'S HOSPITAL ETHICS COMMITTEE
The Chair: I call forward our next presenter, from the St Michael's Hospital Ethics Committee. Good morning. I remind you that you will be given a half-hour for your presentation. The committee would appreciate if you would keep your remarks to about 15 minutes to allow questions and comments from each of the caucuses. As soon as you are comfortable, could you please identify yourself for the record and then proceed.
Dr Wong: Thank you, Mr Chairperson. I am Dr Gerald Wong.
Ms Prentice: I am Linda Prentice.
Dr Webster: George Webster.
Ms Walkerley: I am Shelley Walkerley.
Dr Wong: We represent the ethics committee at St Michael's Hospital. We would like to thank you very much for the opportunity to come and talk to you about these bills. We will be talking about Bills 108 and 109 and Bill 74.The first presenter will be Linda Prentice, the second presenter will be Shelley Walkerley, the third presenter will be George Webster and I will be the last presenter.
Ms Prentice: I am the social worker on the ethics committee at St Mike's Hospital and my comments, I would say, reflect much of the discussion we have had in terms of the ethics committee itself.
A main concern about the proposed legislation is focused on Bill 74. In particular, the act seems to suggest that special advocacy services, strangers to the patient and family, best serve the interests and wishes of people who are deemed vulnerable and incapable rather than the family and the health care professionals.
I consider this assumption to be overkill for the vast majority of people, families and attending health care professionals. A particular issue arising will be the amount of bureaucracy to be developed with the accompanying paperwork and costs which will burden the system, which is severely unable to keep up with rising health care expenditures.
In our experience, the existing bureaucracy for dealing with the financial affairs of incompetent patients leaves them often stranded without access to their own financial savings and pension income while in hospital. If this process occurs now, what will be the results and implications of bureaucratic mandatory advocacy services dealing with even more people who are in critical phases of acute illness?
I agree with previous recommendations, which I have read about, made to this committee that such expansionist services be assessed first on a trial basis with research examining the intended and unintended results from these proposals. Again I urge that the good intentions of assisting those vulnerable persons at severe risk not unintentionally compound the issues of the average citizen and his family dealing with the illness such as stroke or head injury in an acute care hospital.
If the legislation intends to correct perceived injustices in the system of health care delivery, would the dollars not be better spent in upgrading, in education of staff to ensure its standards are met?
Ms Walkerley: My name is Shelley Walkerley. I am a registered nurse practising in the position of a staff nurse at St Michael's Hospital in Toronto. As part of a group of professionals who are members of the hospital ethics committee of St Michael's, I will present comments and recommendations specific to Bill 74, the Advocacy Act, and Bills 108 and 109.
Since I am a nurse, my assessments and conclusions reflect that perspective. My statement is an expression of my own opinions; however, it reflects the position of the department of nursing of St Michael's.
Nurses are required to provide advocacy services for individuals, families and communities through the Standards of Nursing Practice, the College of Nurses, 1990, and the Code of Ethics for Nursing, the College of Nurses, 1991. Both these documents reflect nursing's commitment to community involvement in planning and delivery of health care services. That is to say that I, as a person and a nurse, support the principles of advocacy and community participation as stated in Bill 74.
However, I have some areas of concern, specifically, subsections 19(1) and (2), right of entry. Although right of entry to facilities is well explicated, right of access to persons is not. Since my perspective is the general hospital, I will refer to persons in hospital as patients. All patients in a general hospital would fit the definition stated in section 2, ie, "vulnerable persons." The means of an advocate gaining access to patients is not specified. Clarification is required on the following points:
1. Is it assumed that any person fulfilling the specification of subsection 3(2), advocate, is able to provide advocacy services to any person deemed to be vulnerable, or would services be provided based on the advocate's category, as stated in subsection 15(1), and the vulnerable person's illness or disability? For example, would an advocate from the AIDS Committee of Toronto provide services to anyone in need or only to person with AIDS?
2. The mechanism for identification of vulnerable persons is not specified. Having gained entry to the premises, how does the advocate go about determining which patients require services? In present practice, access to patients is granted to health care practitioners and hospital staff through a consultative process. A patient's right to privacy is respected by this process. If advocates have access to all patients, based on an assumption of vulnerability, the right to privacy could be infringed. Universal access could also interfere with the environment of trust that is essential to the provision of care.
If advocates provide services according to their category, as stated in section 15, how are they to determine which patients they should have access to? It would constitute a breach of confidentiality for hospital staff to provide a list of patients based on diagnosis. Personal information cannot be shared without permission of the patient or his or her surrogate. Staff acting in a patient's best interests by obtaining permission for access could be open to fines under section 34 if their action is construed as hindrance or obstruction. Further clarification of the means of access would ensure that health care practitioners and advocates exist in a relationship of collaboration and cooperation in providing advocacy services to persons in need of them.
Security and wellbeing of vulnerable persons: Bill 74 is entitled An Act respecting the Provision of Advocacy Services to Vulnerable Persons. The bulk of the legislation deals with codifying rights and entitlements of advocates as a means of ensuring the provision of service to vulnerable persons. Although clause 7(1)(h) calls for the commission "to acknowledge, encourage and enhance individual, family and community support for the security and wellbeing of vulnerable persons," subsequent sections do not specify a role for families, acquired or biological, or health care providers as agents of advocacy. Additions to the act, recognizing these groups are reliable and trustworthy advocates, would fully empower all persons to determine their own need for and access to advocacy.
Surrogate relationships: This relates to Bills 108 and 109. While it is valuable that the acts recognize a variety of personal relationships, the codifying of such introduces limitations. For example, subsection 1(2) of Bills 108 and 109 state that partner relationships must be recognized by others. Many same sex and opposite sex relationships are covert owing to societal restrictions. While opposite sex relationships do not require the recognition of others, same sex relationships do.
In present practice, all significant people in a person's life can be included in a collaborative effort with the health care team to determine the values, beliefs and wishes of a person should he or she be unable to speak for himself or herself. The acts simplify the process for the health care practitioner but may not provide fully for the rights and care of the persons.
Dr Webster: My name is George Webster, and since 1982 I have worked as a clinical ethicist at St Michael's Hospital, St Joseph's Health Centre and Providence Centre in Toronto. I completed my doctoral work at Regis College in the Toronto School of Theology, University of Toronto, and I have an adjunct faculty position in the theology department of TST, as well as an appointment in the faculty of medicine with the rank of assistant professor in the departments of anaesthesia, obstetrics and gynaecology and medicine.
I wish to comment briefly on two points in the proposed legislation: first, the ethical principles underlying the substitute decision-making legislation and, second, the duties of guardians of the person and attorneys for personal care.
First, what are the ethical principles and values underlying the proposed substitute decision-making legislation? Should these be articulated in a more explicit fashion? What assumptions are made about the present health care system and what assumptions are made about the care giver/patient-resident relationship?
Many care givers view their professional relationship with patients and residents as a fiduciary relationship, one of trust. Care givers have expressed concern that the proposed legislation, especially Bills 74 and 108, as drafted, is based on the premise that the care giver/patient-resident relationship is an adversarial relationship. Further, the proposed legislation does not appear to recognize the legitimate advocacy role of health professionals in their relationships with patients and residents.
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Second, concerning the duties of guardians of the person and attorneys for personal care, specifically Bill 108, clauses 63(3)1 and 63(3)2, which read as follows:
"63(3) The guardian shall make decisions on the person's behalf in accordance with the following principles:
"1. Any wishes the person expressed, orally or in writing, before becoming incapable shall be followed.
"2. If the person has a power of attorney for personal care, any instructions contained in it shall be followed."
My concern is that guardians or attorneys for personal care are obliged to make decisions on the basis of any wishes, expressed orally or in writing, or any instructions contained in a power of attorney for personal care. I am assuming that we are considering patients or residents who are clearly non-competent, those lacking decision-making capacity.
Consider two case scenarios that are not uncommon that have posed very difficult moral problems for care givers, families and hospitals:
Case 1: An individual has prepared an instructional directive and communicated her wishes to relevant third parties, in this case family, that if she is seriously ill she wants everything done to prolong her life. She suffers a massive CVA, which is a cardiovascular accident, and ends up intubated and ventilator-dependent in our intensive care unit. Her prognosis for recovery is poor. Must she be continued on mechanical ventilation until she dies?
Case 2: A man has a massive bleed in his brain. The aneurysm is clipped and care givers expect a good recovery. Nutrition is supplied by tube and the man does not recover from the original injury and in time is diagnosed as in a persistent vegetative state. He has left clear instructions that he "would not want to be kept alive with tubes." Should feeding in this man's case be discontinued?
Many people have written an instructional directive but it is not clear how these documents have actually shaped treatment decisions. So-called living wills are often difficult to interpret because of language, definition and interpretation of terms and a certain indeterminacy concerning future circumstances. The purpose of an advance directive is to communicate one's wishes, values and beliefs concerning future treatment should one lose decision-making capacity. A difficulty with both the instructional directive and power of attorney for personal care is that we are asked to clarify now what our wishes might be some time in the future concerning possible treatment options, disability or withdrawal of therapy. This is a difficult task. Can we anticipate future circumstances? How informed is our decision now about some future state of affairs? Our perception of disability or deterioration now may simply not reflect the lived experience of those actually affected by a particular disability or disease process.
An advance directive or power of attorney may outline instructions, but third parties will have to interpret same. Many will interpret these documents in different ways. What exactly did the patient mean? Did he or she intend this to apply in these circumstances? Maybe the patient or resident has changed his or her mind, and simply cannot communicate this. How can we be sure now? Care givers often ask these questions about non-competent patients in residence. Care givers do not want to ignore the previous wishes of patients; they want to ensure that the interests of non-competent, vulnerable persons are protected.
In our present situation of limited resources, care givers find themselves in a conflict of interest. Patients may request or demand treatment that is seen to be futile from the care giver's perspective. In these cases care givers are often concerned that other patients are being denied beneficial treatment. Will guardians or those charged with the responsibility of interpreting a patient's wishes or interests via instructional directive or power of attorney be free of this conflict?
In the first case, would guardians or attorneys for personal care be obliged to instruct care givers to continue treatment even if there was no hope for recovery? Would they be expected to follow any wishes or any instructions?
In the second case, would feeding be discontinued? Many people do not view the provision of nutrition, even by artificial means, as a medical treatment. It has been suggested by some writing on this question that not feeding another who is vulnerable and dependent "offends common human decency" -- the notion that no one should die for want of food. Others are also concerned about homicide provisions in the Criminal Code, specifically, failure to provide the necessaries of life.
How should care givers or guardians or attorneys for personal care respond? Must any wish or instruction be followed? Will this protect the interests of another who is truly vulnerable and dependent? Would this promote their wellbeing?
If care givers, guardians or those appointed as attorney for personal care must follow any wish or any instruction, a literal interpretation or uncritical acceptance of same may actually work against the interests and wellbeing of patients and residents.
Dr Wong: My name is Gerald Wong. I am a medical doctor who graduated from the University of Toronto in 1962 and became a fellow of the Royal College of Physicians and Surgeons of Canada in 1967. I hold the rank of assistant professor in the department of medicine at the University of Toronto.
Since 1971 I have been on the active medical staff at St Michael's Hospital, where I am a practising endocrinologist and director of diabetes services. I have been a member of the ethics committee at St Michael's Hospital for the past five years and have chaired the committee for the past three years.
This presentation will be about Bills 108 and 109 and reflect concerns about the possible impact of these bills on the practice of medicine at St Michael's Hospital.
St Michael's Hospital is a general hospital situated in the heart of the city of Toronto. Because of its location it receives, through its emergency department, referred by the police and ambulance services, many patients who are single, transient, estranged from their families and society and who may be incompetent to deal with decisions about their health care. St Michael's Hospital provides a full spectrum of medical, surgical and psychiatric inpatient and outpatient services to the community.
We are in general agreement with the spirit or philosophy of the proposed legislation, which encodes the rights of the patient or a recognized proxy to decide the nature of the health care to be provided by the medical community on his behalf. We have, however, several concerns about the procedural aspects of the bills and have fundamental difficulties with the understanding or interpretation of the legislation.
The definition of "treatment" in Bill 109 is open to broad understanding and may lead to serious disagreement in clinical decision-making. The scope or limits of the definition are not clearly defined. A patient might demand treatment which is considered inappropriate by the health care team.
No distinction in the definition of treatment is made between different levels of care provided by the health care team. The degree to which consultation with the patient or proxy must be made before providing the different levels of care is unclear and may lead to a delay or paralysis of decision-making.
A common problem in both the emergency department and hospital population is the patient who is temporarily incompetent because of alcohol or drug intoxication. The appropriate procedural steps to make decisions and provide proper medical care for these patients in a temporary state of incompetence is not made explicit by the proposed legislation. The role of the advocate in this situation is uncertain.
The degree to which the requirements of the legislation must be carried out, especially when family members are clearly identified, is in question. Whether the legislation allows for latitudes of interpretation or flexibility in deciding the degree to which procedures outlined in the legislation must be implemented may be unclear in individual cases.
Recommendations: We recommend that the definition of "treatment" be clarified to establish the limits of care understood in the legislation. We recommend that some recognition of the various levels or degrees of treatment be included. We recommend that the common clinical situation of temporary incompetence from drug or alcohol intoxication be specifically addressed. Thank you.
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Mrs Sullivan: I am very interested in this presentation, because from the standpoint of one hospital, you have looked at these bills from an ethical point of view, and at all of the bills as they work in concert. I notice the queries you raise in relation to the ethical dilemmas in substitute decision-making and the adversarial nature of relationships which could result from the advocate versus the care giver or patient, and I notice that Dr Wong's presentation uses words such as "unclear," "uncertain," and "may lead to delay," questions relating to the ethical requirements of professional standards versus the patients' rights argument for information and consent.
It has been suggested by an ad hoc committee that includes the OMA, the hospital association, Ontario Friends of Schizophrenics and other groups that the series of bills be withdrawn and redrafted before any further procedure is done, or that the bills would have to be substantially amended before any continuation of their consideration. Would you concur with that point of view?
Dr Wong: Are you addressing anyone specifically?
Mrs Sullivan: Why do we not start with you, Dr Wong, because you are chairman of the ethics committee.
Dr Wong: I think the first thing to reiterate is that although we are not totally certain of what the philosophical and ethical bases of this legislation are, we support very much the idea of respect for the autonomy of the patient and assisting in making decisions about the kind of health care he or she wants delivered on his or her behalf.
I emphasized in my report, and one of the readings is, that we are not lawyers. So when we went to look at the legislation to try to interpret this in the light of the kinds of problems we see in our emergency department or by the bedside or in our offices, we had a great deal of difficulty understanding what it was we were required to do and how compelled we were to do things.
So whether the legislation should be withdrawn and completely rewritten -- I think the important point I am making is that it is very difficult for us who are not familiar with reading legislation to know how to take the requirements into our clinical practices, and we are having to deal with this kind of issue on a frequent basis in our emergency department or on a floor.
Mrs Sullivan: Certainly one of the very serious issues is that the complexity of the overlap in the legislation, given an area which is a matter of ethical concern anyhow, means that if the care giver does not understand the legislation, if the families and patients themselves do not understand what the requirements of the legislation are, how will we ever be guaranteed that any legislation put forward as a protective device either for the professional or for the patient will indeed be carried out? I think that is part of the basis for the concern about the drafting of the overlapping bills and why the suggestion is that this period should be used as a consultative period where people like yourselves come forward and identify the problems, and that the redraft would be appropriate at that point.
My understanding on the health bills, for example, is that there has not been consultation with those affected, particularly relating to consent legislation, since the time a paper regarding the principles of consent was issued by the previous government. My party is very concerned about not only the short-term impact of these three pieces of legislation on patient and care giver, but the ultimate cost for perhaps unnecessary purposes.
Dr Wong: Thank you very much for your comments. It was for this reason that I appended to my report a letter from the director of the emergency department at St Michael's Hospital to me and I thought it would outline very well the kind of dilemmas he is trying to face when he looks at the legislation, and then has a patient come into the emergency department.
Mr Sterling: I would like to thank you for your presentation and particularly your concern over Bill 74, which I think many groups have skipped over and perhaps should be paying more attention to. With regard to St Michael's Hospital, it having evolved from a religious background, what part, if any, does the church now play with regard to the moral and ethical standards of your institution at this time?
Dr Webster: The hospital still seems to be a Catholic hospital. It is owned by the Sisters of St Joseph of Toronto. I believe that in our deliberations around policy matters pertaining, as you know, to questions around termination of pregnancy etc, I understand that we would probably take around questions such as euthanasia -- not withdrawal of treatment, euthanasia -- I think the teachings of our community would probably play a significant role in that.
Mr Sterling: Okay. So there is no formal structure as such, that the church intervenes in the ethical, but it is a historical thing.
Dr Webster: I think that is accurate, yes.
Mr Sterling: Okay. In your arguments, Dr Webster, with regard to advance directives, are you making the argument that you are better without an advance directive than you are with one, or is it that an advance directive should have no enforceability on the health care provider? Your argument seems to be here that these are bad, these are bad, these are bad. I guess I come to the inescapable conclusion, therefore, that you are better off without one than with one.
Dr Webster: In principle, there are major philosophical problems conceptually with the notion of instructional directives, and I touch on that. Around questions such as my trying to anticipate now what it will be like to live when I am a demented person in the special care unit of Providence Centre, or if I have a massive CVA and require feeding by nasogastric feed tube whether I would want that, I think it is philosophically impossible to know the kind of person we will be when we are no longer the person we are now. This is the point I am trying to make.
From my own perspective and in terms of the comments I made in my presentation, I feel that on your question about whether we are better without these, I think we are better with what we would call a power of attorney for personal care. I think we are probably in a better position to interpret the interests and wishes of another in situations that are actually present in the clinical context rather than trying to decipher and interpret what one means by something written six months ago.
Those questions I put in there are ones that care givers have asked me over and over again: "How do we know the people haven't changed their minds? How do we know they meant this about that? How are we to interpret this? Is that what they really meant? Did they say no tubes? Did they mean a ventilator or did they mean they didn't want to eat?" This raises, I think, vexing questions for care givers at the bedside. So in answer to the question, are we better without, I think no. I think we are better with some instruction about what I might want; about the kind of person I am; about what I value; about what is important to me, but I would want in terms of these proposals to tailor it, I think, as the legislation has, to a power of attorney for personal care model where someone can actually speak for you in the circumstances at hand. I think that may more accurately reflect their knowledge.
Mr Malkowski: Thank you very much for your presentation. It was very impressive. I would like to ask you a question: In any situation you have in hospitals where a person may come in intoxicated, under the influence of drugs or alcohol, what is your standard procedure now of dealing with those people? What do you do now?
Dr Wong: The procedure that is done at the present time -- we are seeing this quite frequently -- is that patients are admitted to the emergency department of the hospital, their mental status is assessed and their medical status is assessed. If it is felt that they require some form of emergency treatment, then we try to persuade them that it is in their best interests to accept that treatment.
Of course the difficulty arises when the patient is belligerent, as he occasionally is. That makes it very difficult to know exactly what to do. In fact, if it is possible to persuade patients to receive therapy, if it is something like a laceration, for instance, then we try to persuade them. But I know there are patients, depending on one's assessment of the degree of incompetency and of the kind of medical disorder they have, who will actually be discharged without receiving any treatment at all.
Mr Malkowski: We have heard from different individuals and some from the Ontario Psychiatric Survivors' Alliance, who shared their experience with us at this committee. They told us that when they go to a hospital they are sometimes mislabelled and misdiagnosed -- some schizophrenics, for example. Sometimes families and physicians work in concert and then they find out later that this person has been mislabelled. Whom would you follow in that situation, the wishes of the patient or those of the family? Do you not think it is important for an advocate who can perhaps express the needs of that individual with respect to respecting his autonomy?
Dr Wong: The procedures through which you go in a situation in which the medical problem is psychological or psychiatric is a history taken with the patient and/or with the people who can give information about the illness, a physical examination that will include a mental status examination of the patient and an attempt to determine whether that patient is competent to make a decision about the kind of health care the physician and the medical staff feel is appropriate for the kind of medical problem that patient has.
If a decision is made that the patient receive some form of treatment but the patient is not able to agree with that, once again you are into a great difficulty about how to determine the degree to which the care that is felt appropriate, on the basis of the history and physical examination, should be offered to that patient. Frequently, what will happen is that a third party is brought into this, and it is frequently a psychiatrist, who attempts to help make the decision about whether or not that patient is competent. If the patient is deemed by a third party not to be competent, then we may proceed with treating the patient. If it is deemed by the third person that the patient is competent, then we have to allow the patient to make the decision about his or her health care at that time.
Dr Webster: Could I respond briefly to Mr Malkowski's question? Some time ago I was consulted by our emergency department about a young fellow who was in the end stage of his disease. He was suffering from HIV and AIDS. He had taken an overdose of barbiturates in a downtown hotel and he woke up the next morning and called emergency. The ambulance brought him into emergency and he needed some treatment and refused it. In this situation the question from the care giver's perspective was, "Is the person capable?" By "capable," I mean, does that person have decision-making capacity, given what he had earlier evidenced from his actions to third parties. "Is this person's refusal now an informed one?" To me, the critical issue here is how we go about assessing decision-making capacity, and it is a very difficult question.
The Chair: Ms Prentice, Dr Wong, Dr Webster and Ms Walkerley, on behalf of this committee I would like to thank you for taking the time out of your busy schedules and giving us your presentation this morning. This committee stands recessed until 1:30 this afternoon.
The committee recessed at 1235.
AFTERNOON SITTING
The committee resumed at 1345.
The Chair: I call this committee back to order.
LORNE MARTIN
The Chair: Dr Martin, good afternoon. As you know, you will be given a half-hour for your presentation. The committee would appreciate if you would keep your remarks to about 15 minutes to allow time for questions and comments from each of the caucus members. As soon as you are comfortable could you please identify yourself for the record and then proceed.
Dr Martin: My name is Dr Lorne Martin and I am from Oakville. I appreciate the opportunity to appear before the committee. Approximately nine years ago I was a resident in psychiatry at the University of Toronto working at the Clarke Institute of Psychiatry. I want to relate a short story to you.
I remember one of my patients being wheeled on a stretcher down the hall into the elevator. She was a 24-year-old schizophrenic patient. She was being taken for electroconvulsive shock therapy and she was being taken against her will. She did not consent to the treatment; that consent was provided under the act by a member of her family. As she was going down the hall screaming, "You have no right to do this to me" -- it had been done to her before -- the psychiatrist, realizing that I was a little sensitive about issues of consent and in fact thought it a very odd thing that psychiatric patients should have the right to refuse treatment, explained to me in a rather clever fashion that she really was consenting to treatment. The reason was that the healthy part of her ego would clearly agree to something that was good for her and that what we were listening to were symptoms of her disease that therefore could be disregarded.
As you might have already guessed, I quit my residency in psychiatry and eventually ended up in family practice. I now work as a family physician in Oakville and also as an emergency physician. I also hold the chair of the department at my hospital and I am the chairperson of the bioethics committee at my hospital. I would like to suggest, perhaps differently from other presenters you have had at this committee, that there is a group of people in our society whose rights are routinely trampled on: the psychiatric patients, specifically in psychiatric institutions. Nearly every hospital in this province has a locked psychiatric ward and all you need to get in there is a physician's signature. I myself find this alarming. I have always found it alarming.
Initially when I heard about bills 108, 109 and 110, I was very excited in thinking that perhaps some of these wrongs would be redressed. In reading through the bills, I am not sure if that is the case. I would like to tell you a few other stories. I think they get the point across more pointedly.
I had another patient who was 45 years old and who had spent the better part of 20 years in various psychiatric facilities: the Queen Street Mental Health Centre and then more recently the Clarke Institute of Psychiatry. This was ostensibly for his own wellbeing. His stays were three to four months at a time, and he would always be out in the time between his admissions. Every time he was an inpatient he was there against his will. He had to be locked into the hospital ward. He would try to escape. He was there because he was a danger to himself and to others, the traditional Mental Health Act justification. The only infraction he had ever committed was that at age 17 -- he was now 45 -- he had once driven his car through a parking barrier and had a high-speed chase up the Don Valley Parkway. There were no injuries. This justification emerged at every admission. For that he spent the better part of 20 years in a psychiatric facility.
I had another patient who was a schizophrenic -- at least that is what he was called by the psychiatrist -- who had been in the hospital continuously for 18 months. What crime did he commit? He threatened his room-mate with a knife -- a very serious infraction, I suppose. There was no judicial hearing. He had no way of protecting his own rights. Every single day that he was in the hospital he demanded to know from the psychiatrist by what authority he was incarcerated. You will be glad to know these were the psychotic meanderings of a schizophrenic patient and could be ignored, as all communications from schizophrenic patients can be.
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The problem with schizophrenia is that it is often a dispute between the patient and the family or the patient and society. The patient is always disruptive and alarming and concerning and almost always bizarre, and it is often the consequence of psychiatric admission and treatment that the dispute is resolved. It is resolved in favour of the more powerful party, and that is not the patient. When a patient and a family member are in the assessment unit or in the emergency department, it is the family member who is listened to, because the patient is mentally ill. All his or her communications are discounted on this basis.
I said that when I first saw these bills, I thought they might resolve some of this difficulty and return to the psychiatric patients some rights they deserve and very badly need. But in reading through the bills -- please correct me if I am wrong -- I feel that the power of attorney, which I think many psychiatric patients would be capable of exercising, is subordinate to the power of the guardian.
It seems to me there are a number of ways the power of attorney may be got around. The way I look at things, I am trying to understand how the psychiatric profession and its responsibilities to society may try to get around a power of attorney. I can certainly imagine some of my patients writing these things up, and I see that when a person is thought to be in a state of emergency, this authorizes psychiatric admission and treatment and gives broad powers to a psychiatrist. Do not get me wrong; I am sure they are all well-meaning and I am sure they believe what they are doing is good, but I do not and many of their patients do not either.
Psychiatrists cannot predict the future behaviour of people. That has been shown in study after study. They cannot predict the dangerousness of a person, nor can they predict when a person is going to kill himself. Naturally they deal with a segment of society in which suicide and aggressive behaviour are more common, but that is about as specific as you can get, and with the individual they have no powers whatsoever. Yet the Mental Health Act requires me, in my capacity as an emergency physician or a family physician and a psychiatrist to admit someone to hospital when he or she is at risk. You can only guess how this is acted upon out there in the streets. The risk is to the psychiatrists if they do not admit a patient and he does something. The Mental Health Act gives them that responsibility now. That forces them, or at least puts a heavy weight on them, to be conservative in admitting the patient if there is any question. I do not think these bills are going to change that.
The explanatory section of Bill 108 says: "The fundamental principle of the act is that the wishes capable persons express must be respected even if they later become incapable." I could not agree more wholeheartedly.
I would like to suggest some specific changes to the acts that I think may help the psychiatric patient in making this a reality.
I believe guardians should be bound in law to validate instructions of the power of attorney, and as I read the act they are not. I also suggest that the process of validation of the power of attorney should be made automatic upon admission to the psychiatric facility, and that the process of establishing a power of attorney be automatically facilitated through the advocate on admission to a psychiatric facility. That could be done whenever the patient is found to be capable, or presumably at discharge.
I suggest that the power of attorney be effective in refusing psychiatric admission and treatment. You might wonder what then happens to the so-called dangerous patient and what authority the psychiatrist would have if my recommendations were to be accepted. My point is only that if we are going to incarcerate somebody, there should be a formal judicial process and a person's rights should be respected. They should have their opportunity and their day in court.
That really is the substance of my presentation. I wanted to speak directly to the members of the NDP in the committee. The NDP was instrumental in some recent changes to the Mental Health Act that did enlarge the rights of mental patients, of the so-called mentally ill. These were important but they are completely ignored in our hospitals today. I think there is much that could be gained by these bills. I will not speak about all the other excellent aspects of the bills, including the ability to create something like a living will, which I see very much as an advantage. Thank you.
The Chair: Questions and comments. Mrs Carter.
Ms Carter: I think in a sense you have broken the mould. We are seeing a pattern emerging of one type of group. We actually had a coalition this morning, which included the Ontario Friends of Schizophrenics, the Ontario Hospital Association, the Ontario Nurses' Association, and the association for community living. They have reservations about the bill, but we also have quite a long list of groups who are supportive -- I am talking about Bill 74 here. They seem to be the more down-to-earth consumer level. We have psychiatric survivors, People First, who believe in the humanity of severely disabled people and so on.
I just wonder from what you said, do you really have any problem with Bill 74? It is consumer-oriented. That is the whole point of it: to empower the vulnerable person himself or herself. It is to say, "Well, whatever somebody else says is good for you, you have the right to make your own decision, even if all the professionals and so on say you are wrong."
Dr Martin: This is the Advocacy Act you are speaking about.
Ms Carter: Yes.
Dr Martin: I do have some reservations, and it is only because the motivation of the psychiatrists and of psychiatric treatment is always the best interests of the patient. It is my own opinion that the only way to really protect those interests are to let the person himself or herself say what those interests are, and the rest of us can all be damned. I really believe that, and I am not sure that that bill has that intent. Really I focused my comments on the power of attorney because I feel that they do, and I feel that it is the most powerful aspect of the bill in protecting people's rights.
Ms Carter: But leaving the other bills out, if I can, and focusing on Bill 74, I do feel that as far as that goes, it is definitely what the consumer thinks that has to be taken into account and passed on by the advocate.
Mr Fletcher: Just a couple of quick things. We have had a lot of presenters coming forth. Some of them have been schizophrenics, some of them have been parents of, and some of the schizophrenics themselves are saying, "I'd like to sign a form that says that when I'm in a delusionary state I can have a person designated to make sure I get treatment." That goes along with your thinking?
Dr Martin: I have no trouble with that whatsoever. That extends the rights of that person when he is capable to the time when he is incapable. A small percentage of psychiatric patients will choose psychiatric treatment.
Mr Fletcher: As I say, we have had presenters come in who are parents, and some of the stories I have been hearing about the schizophrenics' state -- wandering the streets, no shoes in a cold winter, just right out of it. Now you are saying that this person could say, "No, I don't want treatment," and that is okay?
Dr Martin: I am absolutely saying exactly that. I would like to respond by saying that there was a time in the 19th century when a man could commit his wife to a psychiatric hospital without even a physician's order, and it would be just that type of circumstance. Sometimes the only way a person has to rebel against the situation he is in is to become disordered and disorderly. I think this was the case at a time when women had no rights; this was one of the only options left to them.
I am not trying to downplay. It is a terrible problem, having a person like this in your family, and it is not going to be necessarily the fault of anybody. It can be a terrible problem. I am only saying that the resolution of the dispute must respect the rights of all parties. That means that if we are talking about incarceration and if we are talking about treatment, the person has to have a judicial process to defend those rights.
Mr Fletcher: I was thinking of the parents or friend or relative -- my heart goes out to them -- who watch the person go into this state. They have lived with the person for so long, yet they do not have the respect for his decisions either. Do you find more families are disruptive when it comes to treatment or are they sincerely trying to help but maybe going the wrong way? I do not know. I am trying to understand it myself.
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Dr Martin: They are in a very difficult plight. We do not have a lot of time, but I guess I would like to say a word about treatment. The treatment we give for schizophrenic patients is major tranquillization. It basically takes the lifeblood out of you: It eliminates your sexual drive; it eliminates all aggressive drive; it makes your problems very small because you do not care; you become apathetic. That is what the treatment is, and if the problem is a person who is really disrupting the family because of his behaviour, it works in the sense that it solves that problem, and obviously hospital admission solves that problem as well.
I am only once again saying the rights of the patients are being trampled, and the treatment itself is extremely damaging. Long-term treatment with the anti-psychotic medication causes damage to the functioning brain -- permanent damage. I have patients, a number of them in senior citizens' homes now, and I cannot take them off the medication because they have permanent brain damage and taking them off the medication brings the symptoms out. So the treatment is in my opinion a bad thing. I believe the incarceration is bad, I believe the drugs are bad for the patient, and a lot of those patients believe so too.
Mr Winninger: I appreciated your submission and I just wanted to explore with you a couple of your recommendations because I am not quite clear in my own mind on them. First of all, you said that you do not believe the guardian is bound in law to follow the wishes of the vulnerable person. I would just say that we do have section 63 included in Bill 108 to address that very concern, that the guardian or attorney for personal care carry out the wishes and instructions of the person.
Dr Martin: That is right, but I think if it is seriously meant that the attorney could not be gone over by the guardian, then you would not have the inclusion that the attorney is suspended when the guardian is appointed. And also it says there -- and I am taking a lot from the language -- that the guardian is bound in principle. In other words, if the guardian does not want to respect the wishes of the attorney, he or she does not have to go to the courts. It is just a guideline there for the guardian, so I feel it is not strong enough.
Mr Winninger: Okay. To take your second point about the guardian overriding the attorney, just to make sure we are both clear on this, it is my understanding that an attorney would have to be terminated before a guardian would be appointed, that there would be no compelling reason to overturn an executed power of attorney for personal care.
Dr Martin: If I am a schizophrenic patient and I appoint someone to be my power of attorney and then I am behaving in such a fashion that everyone believes I need to have hospital admission, someone applies to the courts for the appointment of a guardian and that is the end of my power of attorney. That is how I see it.
Mr Winninger: Right, but at that point the power of attorney is terminated. Is that something you find desirable or not?
Dr Martin: No. I think the power of attorney should remain in effect. I feel that if the guardian wished to go against the power of attorney, that should require a judicial process.
Mr Winninger: If the attorney who was appointed in all confidence by the donor of the power of attorney turns out to be a bad choice and makes all kinds of unwise decisions, should there not be any constraints on the way that power is carried out?
Dr Martin: That is right. I guess there is a balance of risk there, but it is my own opinion that is much less of a concern than the power that is already there and that I feel will remain despite these bills.
Mr Winninger: Okay. The last point was your recommendation that there be a power of attorney to refuse psychiatric treatment. Was that a more specific kind of power you were suggesting in your third recommendation?
Dr Martin: That is right, that the power of attorney include the power to refuse psychiatric admission and treatment. In other words, I am suggesting the unsuggestible, that this act supersede the Mental Health Act, which I realize is probably completely unfeasible, but this is the problem.
Mr Winninger: So you acknowledge that it is problematic?
Dr Martin: I am sorry, politically?
Mr Winninger: To override the Mental Health Act, because some people have come and presented a case that there should not be civil commitment at all.
Dr Martin: I agree with that.
Mr Malkowski: Your presentation this afternoon was fascinating. Sometimes there is perhaps a patient who has been misdiagnosed as schizophrenic, or another issue we talked about is treatment and how the treatment can have worse side-effects, or long-term side-effects, on the patient. Do you have any studies or research on how common that is, how often it happens in terms of misdiagnosis or the ill effects of the treatment on a patient?
Dr Martin: It is a very interesting question that you ask and a difficult one to answer. There are no objective criteria -- and my psychiatric colleagues, if there are any around, will be bristling -- for the diagnosis of schizophrenia. It is not like the diagnosis of a myocardial infarction where there are objective criteria; we are dealing with an organic process that can be defined. Schizophrenia, in the tradition of psychiatry, is what psychiatry calls schizophrenia and it is a very nebulous thing and very difficult to define. It is impossible to present a study saying how often it is misdiagnosed because I do not believe there is a clear diagnostic criterion.
As far as the harmfulness of the treatment, it is estimated that 30% of patients who have long-term anti-psychotic use end up with permanent brain damage, and that does not comment on the fact that people currently taking anti-psychotic drugs are having their brain function interfered with, because these are major tranquillizers.
Mr Sterling: I find your presentation interesting. One thing I think is of interest is that if you were to terminate a power of attorney through getting guardianship, that automatically points to a court process, and I do not understand your concern about that particular part. In other words, if I went for the guardianship of a person I deem mentally incompetent who had a power of attorney, then I would have to go through a court process to terminate that. I was watching Mr Winninger ask you questions and watching counsel behind him, and I think that is what he was thinking.
What happens when people who care about their son, daughter, brother or whatever know that something is dramatically wrong, they determine that their son or daughter is suffering from schizophrenia, or the symptoms appear to be that way -- how do they remedy the situation in your scenario? If this person is suffering from this dementia and part of the dementia is to reject treatment because of paranoia, how do you deal with that person in society?
Dr Martin: It is part of what I would call a psychiatric myth that psychiatric patients reject treatment because they are paranoid or because they are demented. I believe they reject it because it makes them feel terrible. I guess my own suggestion is that if we are going to provide asylum or aid to this type of person, we are going to have to find a way to do it that is acceptable to them.
Mr Sterling: Given that the present medical technology is that you have to use drugs of some sort to deal with it, then you are suggesting there is no acceptable treatment at this time.
Dr Martin: I am suggesting that you do not have to use drugs. I am suggesting that this is really not a medical act when we use psychiatric drugs. This is a social and political act and I think it has to be understood as substantially different. It is not like a heart attack where I use a clot lyser to open that vessel back up; that is medically indicated treatment. We are using these drugs to quiet these people down because their noise is extremely disruptive to their family or society. They are standing on the curbside screaming in a bizarre fashion. We are using the drugs to shut them up. In my opinion, it cannot be defined as medically indicated treatment.
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Mr Sterling: I have been somewhat involved with attempting to have a medical drug approved in the province of Ontario: clozapine. People who have had the opportunity of using that and Dr Barry Jones from the University of Ottawa and the Royal Ottawa Hospital say that schizophrenic patients who are treated with this become more productive. They are able to return to school; they are able to become contributing members of society. And yet you would say clozapine is no good.
Dr Martin: Have you had here any groups of psychiatric patients treated with this drug telling you how wonderful it is?
Mr Sterling: Yes, there have been.
Dr Martin: There have been?
Mr Sterling: Yes. Not in this committee, but I have read the testimonials of these people.
Dr Martin: You see, one has to be careful. A lot of the excitement about new treatment comes from the profession, and we have to be, right off the top, very sceptical. One has to be sceptical with all the new drugs that come on the market. Often a new drug comes on the market greatly heralded and ends up with its reputation sullied for one reason or another.
Yes, this is the latest fashion, but in the last 20 years there have been a number of drugs come that have been the "breakthrough" in schizophrenia, and I have seen them come and go. That particular drug has a one in 100 incidence of aplastic anaemia, which is potentially fatal.
Mr Sterling: Yes. That is why they test every week for it.
The Chair: Thank you, Mr Sterling. Dr Martin, on behalf of this committee I would like to thank you for taking the time out this afternoon and coming and giving us your presentation.
Dr Martin: Thank you very much.
SCHEDULING OF PRESENTERS
The Chair: Our next presenter is not here. This is the second time he has been scheduled, so I think it is important that the committee have a brief discussion on the facts surrounding this and see how we can make it possible for him to attend. He is being held on a Lieutenant Governor's warrant and is having difficulty in getting released to come and give his presentation.
We have discussed with him about a teleconferencing session, and he is not really agreeable to that. He would like to come in person. Being that this is a person who has not been represented in this committee by anybody, we feel it is important that he does attend. Maybe Lisa could fill in some of the details.
Clerk of the Committee: Essentially, this person has been scheduled twice and would like to appear before the committee. In consultation with the Chair and the Vice-Chair, because one of the issues was financing to bring him down, an offer has been made not only to pay his costs of coming down, but also to pay the costs of the two people who would have to accompany him. The hospital still said no after that was offered to him, and the hospital is suggesting that he be teleconferenced. As the Chair just said, he is rejecting that as an option.
That leaves us with a couple of options in terms of this committee. One is to again offer him the teleconferencing -- I guess to issue a stronger invitation. He has asked me to bring before this committee the option of the committee issuing a Speaker's warrant that the hospital would then have to comply with to allow him to come down.
The Chair: Personally, from the Chair's perspective, I would recommend against the Speaker's warrant, because basically what we have done has been to have an open invitation for people to come and give presentations; we have not subpoenaed anybody. So I am not really looking at that as a viable option, but I am in the hands of the committee.
Mr Winninger: I think we should reiterate our strong desire that he be allowed to attend here but without issuing the Speaker's warrant, and indicate perhaps that in our view his public right to attend and make a submission is being effectively denied. These days, when our federal electoral reform committee is looking at expanding the rights of prisoners and also people on Lieutenant Governor's warrants, I think we have to be mindful that we may be denying him his civil rights if we do not issue a strong, perhaps imperative, invitation to have him attend with his security guards present.
Mr J. Wilson: Why is he on a Lieutenant Governor's warrant?
Clerk of the Committee: I have not asked.
Mr J. Wilson: I do not think you can brush aside, just because he is on a Lieutenant Governor's warrant. There may be good reasons why the hospital has denied the request.
Mr Mancini: Yes, those were the questions that were going through my mind also. Let's find out what the details of this warrant are. If we cannot talk about it in open committee, we can talk about it in camera, or the subcommittee can deal with it. But for us to speculate about something we do not know anything about is difficult, and we will take it from there. It is hard to make a decision without all the facts.
Mr Fletcher: I can understand the concerns of the members, but I think what David said about a strong invitation would be a sensible way to go. Whether the person is on there for whatever reason should still not be a deterrent to the person being able to testify before this committee. I do not know why the hospital is deciding whether or not he should testify, and I think that in itself is an infringement on a person's civil rights. I really do not want to get into the legal aspects of a warrant or a subpoena or anything. I think what Mr Winninger was saying was just to issue a strong invitation. If that fails, then we have done our best.
Mr Mancini: I think we are playing games. If my friends across the floor feel that strongly about it, we have the right to ask for a Speaker's warrant, which has been done in the past, has been implemented in the past. So let's not say that we want the gentleman here and we are going to send a strong opinion to whomever and we are going to protect this gentleman's rights by doing that. He should be able to come. If the gentleman cannot come, well then, that is the end of it. If you really want the person here, you issue a motion, you ask for a Speaker's warrant. If the Speaker agrees, it is signed and the person appears. But before we go to those drastic steps, let's find out what the nature of the Lieutenant Governor's warrant is all about. Who knows, maybe we might join with you in a Speaker's warrant once we have all the information. But do not tell us you want the guy here but then you do not want to issue a Speaker's warrant.
Mr Sterling: A warrant like this is usually against a person who is dangerous to other people in society. I do not understand the great concern about this individual when we turn off hundreds of other individuals who come from faraway places from appearing in front of committees, which would cost the committee, unless they have some special knowledge with regard to the bills and there is some feeling by members of the committee that those people's ways should be paid to come in front of a committee to express their opinion about whatever. I suggest we ask this individual to write a brief, and then if the members of the subcommittee feel that he has some special knowledge which we should have in front of this committee, then we deal with that at a later time.
The Chair: The Chair would entertain any motion as to the direction the Chair should take.
Mr Sterling: I suggest we ask him -- if a he; I was not certain -- to make a written brief. If the subcommittee feels there is some special contribution this individual can make to this committee, then we look at it further at that time.
The Chair: That is in the form of a motion?
Mr Sterling: Sure.
The Chair: Discussion?
Mr Malkowski: I am not sure it is fair for us to question this person's right to -- he obviously wants to come to the committee, but we are requesting he write a brief. I think we may not have enough information whether they can do that. They may not have the resources available to get the help they may need in writing such a brief. I think we need to keep that in mind as well.
The Chair: Further discussion?
Mr Mancini: I think Mr Malkowski is correct. We are asking this gentleman to write a brief, and we do not know, given the circumstances, if the person will have the proper assistance, or in fact would be able to do what we are asking him to do. We changed the subject entirely. A few minutes ago the subject was how we were going to get this person before the committee and what steps we were going to take to get this person before the committee. We seem to have abandoned that for the idea of having this person write us a brief. I think we are dealing with two separate matters, and I have not heard a conclusion on the first one yet.
The Chair: Just as background, the presenter has refused to submit a brief.
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Mr Sterling: I think he has been offered a television hookup where he can talk. He does not have to present a brief, then; he can give a tape or whatever. There is some concern that our committees not expend public dollars to excess in a recession. I think it is important that we hear as many stories as we can, but we also have to be cognizant that every time we write a cheque it means that our deficit for this province becomes greater etc. I do not understand this discussion when many committees turn down hundreds of individuals who want to come and make a public appearance in front of committees.
If I have no idea, and this individual refuses to tell us what his problem is about in some form and we have offered him some alternatives, then that is too bad.
Mr Fletcher: I agree with what Mr Sterling is saying, that if we have offered for a brief and that is not good enough, then fine; so be it. Why do we not just take this one to the subcommittee and let it deal with it at another level? You do not have your motion. I will make a motion to that if we need it.
Mr Sterling: I do not think we need another motion.
The Chair: We have a motion on the floor already.
Mr Fletcher: Yes, I know there is.
Mr Sterling: I will withdraw that motion. Can we refer this to the subcommittee?
Mr Fletcher: That is a good motion. Thank you.
The Chair: Any discussion on the motion to refer it to the subcommittee? Seeing no discussion, all those in favour? Opposed? Carried. If possible, could we have a five-minute meeting of the subcommittee right after adjournment today? Thank you.
DYING WITH DIGNITY
The Chair: I call forward our next presenter, from the Dying with Dignity group. Good afternoon. I remind you that you will be given a half-hour for your presentation. The committee would appreciate if you would keep your remarks to about 15 minutes and allow time for questions and comments from each of the caucuses. As soon as you are comfortable, could you please identify yourself for the record and then proceed.
Mr Elliott: Thank you, Mr Chairman. My name is Donald Elliott. I am a retired lawyer and I am the president of Dying with Dignity. With me is Marilynne Seguin, who is a registered nurse and who for the last seven years has been the executive director of Dying with Dignity. On behalf of our membership I would like to say to this committee and to the government that we want to express our support for this legislation, in particular for those parts of Bills 108 and 109 that will give legal authority to living wills and powers of attorney for personal care.
At the present time, with very few exceptions, every adult in Ontario who is mentally and physically competent has the common-law right to make his own decisions about his medical treatment. The problem is that there is no way that an adult in Ontario can make decisions about his future treatment and have it authorized, and at the same time there is no way that an adult in Ontario can appoint an attorney to act for him when he or she is unable to make those decisions. This legislation corrects that problem.
As I said, Marilynne Seguin has been involved with Dying with Dignity for more than seven years. She is a great lady and she has counselled many families and their loved ones when they have had problems at the end of their lives. I would like to call on Marilynne to give some instances from her experience as to how this legislation can help those situations.
Ms Seguin: I welcome the opportunity speak to this committee this afternoon. As you will see on page 1 of our presentation, Dying with Dignity speaks for 6,500 Canadians, approximately half of whom live in Ontario. In 1991 we received requests for assistance at the rate of 1,000 calls a month. We have no idea of what the statistics will be in 1992, except that they are considerably higher than this rate.
Mr Elliott is much more qualified and will address the legal concerns we have with this legislation. I believe my own unique experience with the dying and their families allows me to address some of the very urgent human concerns these bills could remedy.
As a registered nurse and the executive director of Dying with Dignity, I am often called upon to counsel those persons who are nearing the end of their life. In the last few years we have started keeping a few records on this, and I have been at the bedside of over 300 people at the moment of their death.
To demonstrate the problems which so desperately need your support through this legislation, I would talk to you about four people -- friends, clients, whatever we want to call them -- who died fairly recently. Of course their names have been changed to protect their privacy.
On page 2 you will see the stories of Eva and Harry. Eva was an elderly lady who had suffered a great deal in her life. Six years ago she had suffered a stroke of major proportions. Her son had removed her from her home and admitted her to a nursing home. Since that time he had more or less decided that his mother no longer existed and had chosen not to be involved with her. The one complication was that he held a power of attorney for her property. There was some confusion at the nursing home where she resided that this also gave him the right to make some decisions about her health care.
Eva had decided about two years ago that she wanted to be responsible for herself and to be taken seriously about this. She had signed a living will in which she decided what care she would choose to have for the rest of her life and those treatments she would refuse should certain circumstances evolve.
A couple of weeks before the end of her life, she developed pneumonia, and the fears she had in place became a reality. She decided she would not choose to be resuscitated should she have cardiac arrest. She did not wish to be treated with antibiotics, which had given her terrible reactions and so on before. She made a number of choices. However, the physician in charge of Eva's care phoned the son and said, "What would you like me to do?"
The son indicated he wanted everything possible done to keep his mother alive but, to quote, "Just don't bother me about it." The physician was in error in that he believed the power of attorney gave him the power to ignore Eva's wishes. This legislation could change that confusion.
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Harry is quite a different situation. He is 55 years old. He was a virile, vibrant man, a mover and shaker sort of person in the manufacturing business, and he was as dexterous with his hands as he was agile with his mind. He had always controlled everything around him and felt a great need to have that power. For four years now he has been suffering from Lou Gehrig's disease, which steals away all the muscular-neural ability. He could no longer walk, turn, go to the bathroom, blow his nose, dry his tears or any of the other physical functions that many of us take as an ordinary part of our everyday life.
Harry had decided, knowing the course of Lou Gehrig's disease, that there were certain decisions he wished to make. If his respiration failed, he did not want to go on a ventilator. If his throat filled up with fluids, he did not wish to have a tube put down to withdraw all those fluids. He felt this would be undignified and not in keeping with his own sense of integrity.
In order to facilitate this, he asked Debra, his wife, to assume power of attorney for health care. She was quite willing and able to do so. The physician said he would recognize this. However, such permission does not exist under the present law and it would need to be enacted under the legislation you are discussing today.
Sadie is on page 3 of your material. Sadie was a grand old lady, centre of a large, noisy family, and she was being very well cared for in a large Metropolitan Toronto hospital. But suddenly, at 6:30 on Friday night, Sadie had a premonition, if you will, a feeling, a very strong feeling that comes to a great many people who are close to death that she would die soon, and she wanted this to be at home with her family, with her husband, Jake, and her noisy grandkids. The physician, who took very good care of her, was away for the weekend. A new physician was put in charge of her case and said: "Absolutely not. I will not discharge her home. Who is going to be responsible for her?" Without a power of attorney, he felt he could not honour her wishes and she was not allowed to go home. I think this legislation could remedy this serious problem.
Joseph was a slightly different story in that it was a physician who contacted me to ask for help to take care of Joseph's problem. Joseph had come to Dying with Dignity about a year ago and told me he had terminal cancer. He seemed very well in control of the situation. He wanted to sign a living will, which he did. He personalized it with the care he would like to receive and what he would not accept. What we could not foresee was that at the ninth hour, literally, the night he was expected to die, his elder brother arrived on the scene and threatened the physician, saying: "If you allow Joseph to die, there'll be big trouble. I haven't finished my business with him and I will not permit you to allow him to die." Joseph too, as well as his physician, needed the new power this legislation could give him.
Eva, Harry, Sadie and Joseph illustrate only the tip of a very vast conundrum faced by thousands of patients, their families and their health care workers every day that passes without clear, precise guidelines in these agonizing medical and legal and social issues. The dilemma addressed by these bills must be resolved and it must be now. Mr Elliott will proceed with our legal concerns on these matters.
Mr Elliott: Thank you, Marilynne. As I said in my opening, as a society, Dying with Dignity supports this legislation, but perhaps because I am a lawyer and because during my professional life I was in the medical-legal field, I feel, and the committee that looked after this with our group felt, that there were some changes that should be made to this legislation to make it more people-friendly.
Our first problem has been with validation, and if you will return to page 4 of our submission you will see what I am referring to. Bill 108, subsection 47(9) provides that, "The power of attorney is not effective until it is validated in accordance with section 49."
I have given my wife power of attorney, and if she was required to use that power of attorney because I could not make medical decisions for myself, this is what she would have to do: She would have to make an application to the public trustee and guardian. She would have to supply him with copies of the power of attorney and statements of two assessors, probably a psychologist and a psychiatrist who would have examined me as to my capacity to make medical decisions for myself, then she would require a guardianship plan. If at that time the public guardian and trustee desired, he could appoint an advocate who would come and speak to me about this situation, report back to the public trustee and guardian and then, if the public guardian or trustee decided he would not validate this power of attorney, it could go to the courts. If in the long run my wife was successful in getting this power, then as of December 31 in each year she has to make a report to the public guardian and trustee as to all the decisions she has taken under the powers that have been given to her.
We say that this is far too complex, that a solution could be found which would be much more appropriate. The Law Reform Commission of Alberta has been considering legislation to this effect and has this document. We have made copies available to you. They have considered that problem, and have in my opinion a much more appropriate and succinct way of dealing with it.
Another problem we have is with the execution of these documents, particularly the power of attorney. We feel it could be made much more simple. As you may know, the courts in Ontario have held that for a Jehovah's Witness a simple printed statement that has been signed by the person is a direction to any doctor who sees it, and that even though the patient is unconscious he no longer has the right to give a blood transfusion to that person. The courts have accepted a simple execution of a document like that and we feel it would be sufficient, simpler and much easier to handle if that was all that was required of these documents -- that is, the power of attorney.
Something we would like to see added to the legislation is that the power of attorney, whoever that person is, should be required to accept the responsibilities under that power of attorney by saying he does so and by executing the document. I do not want to be surprised some time to be called by the hospital saying that one of my friends has appointed me as his power of attorney and now they need a decision from me as to his treatment. I need to have discussed the matter with that person. I need to know what his or her values are and what they would wish in these particular circumstances. We feel it is particularly important that the person who is willing to be the attorney for the grantor should be required to execute that document.
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On page 5 we talk about a couple of matters, revocation of directives and divorce, and we give suggestions on how those two headings could be made much simpler.
We also want to talk about another addition to the legislation, which is the effect of existing documents. This is the so-called grandfather clause. We suggest a clause we would like to see added to section 23 which would make all documents -- living wills and powers of attorney that have already been executed in this province or elsewhere when they come to this province -- legally authoritative as well.
One further addition we would like made is that there should be an onus on medical practitioners to inquire as to whether there is a living will or a power of attorney for personal care. In the legislation it is provided that the doctors must inquire if there is a near relative who can assist with these decisions. We suggest that they should also be required to inquire as to whether either or both of these documents are available in order to assist to make those decisions which are necessary.
One further matter we would like to suggest to the government is that, if and when this legislation is passed, there be given a great deal of publicity to it through the media. We find that there are many, many people in this province who have never heard of living wills, never heard of what we call durable powers of attorney and are unaware about their rights to make their own decisions if they are compos mentis, so we would suggest that the government make a large effort to see that these matters are publicized.
There is one last request we would like to make, and that is that if there are any changes to the legislation which are going to be suggested by this committee to the Legislature and if they affect the interests of the Dying with Dignity society, we would appreciate it very much if we could see what those amendments are and have an input about them.
We are very grateful to Norm Sterling, who really started this, to Ian Scott and to the members of the NDP -- Frances Lankin, Howard Hampton and Elaine Ziemba -- for bringing this legislation forward. It has given a great deal of hope to a large number of people here in Ontario and we would like to commend those people for their help.
There is just one other matter I would like to put forth for your consideration, and that is that if these four bills are going to take a lot of time in your consideration or it is going to be very contentious or take a lot of amendment, to consider whether it is possible to excise those parts which affect living wills and durable powers of attorney, or if there might be some possible way of reinstating and considering Mr Sterling's Bills 7 and 8 so those matters can be considered, as I say, expeditiously. Thank you, and we are of course prepared to answer any questions.
The Chair: Thank you. Each caucus has about three minutes for questions and comments.
Mrs Sullivan: I have been very interested in the work you have done in the past and the efforts Mr Sterling has made in presenting Bills 7 and 8. I did not sit on the committees when those bills were considered, but we are confident that most of what he has put forward has been incorporated into these acts.
I have been interested, though, in some of the limitations or ethical questions that arise as a result of advance directives or living wills, and I would like to put some of these to you. I know there is not much time to respond; forgive me, Mr Chairman. One of them relates to directions that are ambiguous or that may relate to an illness or disease or occurrence that is foreseen today, when indeed the medical or ethical question that comes to the fore relates to a very different factual and medical situation: whether one illness was contemplated or whether there has also been a change in the status and practice of medicine over that period of time. That is one area.
Another thing has been put to me quite forcefully by many health care providers. I have been concerned about parts of the legislation that eliminate or virtually eliminate tissue donations, for example. One of the things I am told by providers in the field now is that even with a licence, which appears to be a useful and simple documentation of an advance wish, if a patient comes in, particularly in a traumatic situation, whether it is a car accident or a workplace injury, nine times out of 10 that documentation is not found. Either the police have it or it has not been located.
You talked about the difficulties of execution and the difficulties of the health care professionals delivering the service being very clear. How do you see those things being brought together in terms of a completely redrafted, we hope, legislation that will be workable?
Mr Elliott: Maybe I can answer. First there is, and always has been, the problem with living wills that they may be vague or unclear and difficult to make out in accordance with the particular situation that has arisen. It is almost impossible to think of all the varieties of things that could happen to us and make the proper requirements for those happenings. That is why the power of attorney for personal care is so important, because that individual then stands in the place of the patient and the doctors then can speak to that person. They can tell him or her what the diagnosis is, what they are considering doing and what the prognosis is. Then, on the basis of the values known by the attorney of that particular person, he or she can make a decision as to whether he will accept or will not accept that particular treatment.
You are right; in many instances the living wills can be vague. The power of attorney overcomes that and the living will in effect acts as a kind of philosophy of the person even though it does not exactly fit the situation that may happen. It will give everyone -- families, powers of attorney, the proxy -- it will give them the feeling and the values of that person and they will be better able to carry out what that person would have decided if he had been compos mentis at the moment.
Mr Sterling: I would like to thank my two friends who are in front of this committee this afternoon. I have had numerous contacts with them over the last two years, since I started sort of the legislative thrust for this.
Mr Winninger mistakenly portrayed my legislation as being dead. It is as alive as Bills 108 and 109 are in a formal sense at this present time. I have voluntarily stood back, because I thought there were some advantages in the government legislation over mine and have made that clear in writing to other members of the committee. I have only suggested that we keep it there in case something happens to Bills 108 and 109.
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Dying with Dignity brings forward several areas of concern over the formality of drawing advance directives. In light of all those suggestions I would like to ask Mr Winninger why such a formal requirement, as set out in your legislation, is needed.
I think what Mr Elliott has said in response to Mrs Sullivan's question is that the advance directives, other than the power of attorney, particularly the living will, cannot be perfect regardless. I do not think anybody can draw one which will cover every base or whatever it is, but there is going to have to be some interpretation to it, dealing with powers of attorney, dealing with property at this present time. We entrust the validity of that instrument to the person who is trying to exercise the power. Why are we requiring such a mesh of regulation and formality to these documents?
Mr Winninger: I may give a very general answer and then I may ask Mr Fram if he has any additional comments to make.
First of all, we are reposing some very extensive powers in the attorney for personal care here, very extensive powers to consent to treatment or not, to make a number of important decisions that affect the welfare of the vulnerable individual. I think it is important that the formalities be safeguarded to a considerable extent. We all know of cases of abuse in the past, even with powers of attorney for property, where people have been coerced into granting powers of attorney and then the attorney does what he or she wishes with the property. In this case, by having those formalities in place, just as we do with the will, requiring a couple of signatures, people who are not related to the donor of the power of attorney, we have some assurance that this power of attorney reflects the wishes and instructions of the donor.
I am sure Mr Fram can elaborate on this.
Mr Fram: I agree with Mr Winninger's comment. The other thing is that the past history of execution of powers of attorney for property was such that these safeguards were directed at trying to improve that we do not get incapable people appointed powers of attorney for property.
Then we came to the next decision, which is, should we have two different sets of witnessing requirements? The answer was no because quite often people will go in and do both at the same time. That would be needlessly confusing, so we kept the same set of witnessing requirements for the power of attorney for property as well as the power of attorney for personal care.
The other thing of course is that this goes beyond just medical decision-making. It goes into ongoing guardianship type of situations, of ongoing powers, unlike just a medical proxy. We felt that since these powers may be ongoing over a long time those provisions would be helpful.
Mr Fletcher: Just a couple of things, one right off the bat: We have been waiting a long time for this legislation to come through and I have already commended Mr Sterling for his foresight in getting this off the ground. In fact, I commend the Conservative caucus for trying to make amendments that will make these bills a lot better. I think that is one good way of looking at it. As I say, you have waited a long time, and we heard a group this morning and we heard the Liberal caucus say, "Scrap everything." Can you wait? Can you scrap it and wait another two or three years, as far as your people are concerned?
Mr Elliott: We would be very unhappy if that happened.
Mr Fletcher: I thought so. That is why when I looked at the press release from the Liberal caucus about scrapping everything, I thought: "No, no. People have waited too long. We have been in the trenches too long." As I said, Mr Sterling has fought long enough to try to get this through. Just from my own personal experiences, I agree; it has been too long.
The Chair: Thank you, Mr Fletcher. Very briefly, Mr Wessenger.
Mr Wessenger: Just a quick question with respect to your comments concerning validation. I assume you are aware that under section 16 of the Consent to Treatment Act, "The incapable person's attorney for personal care under a power of attorney that confers authority to consent to the treatment but has not been validated under the Substitute Decisions Act" can give a consent. I assume you are aware of that.
Mr Elliott: Yes, I am. But I am also aware that in Bill 108, under 5, explanatory notes: "A person may give a power of attorney for personal care. The power of attorney comes into operation only when it is validated by the public guardian and trustee on the basis of evidence that the person is incapable." In looking at this, Alberta has suggested that their reading of it is that it must be validated. I keep thinking to myself, suppose my wife wants to validate it on the Friday afternoon before Labour Day. We live up on a farm north of Brampton. Where is she going to go and how is it ever going to be validated?
Mr Wessenger: Then what you would really like is some clarification in the Substitute Decisions Act, because it is clear under the Consent to Treatment Act that they can give the consent. You are concerned that there be some clarity made.
Mr Elliott: Or that somebody would require validation, and what would you do then? You say: "Well, look at what the act says about it. It does require validation." I think it needs clarification and I think that in Alberta they have the right idea. If my doctor says he thinks I am incapable of making these decisions and he is going to call on my wife, and I say, "No, I can make those decisions," then he is empowered to call in another doctor. If that other doctor agrees with him, that is all that is necessary. Then my wife has the power to make the decisions for me. That is in effect what this legislation is saying, because it requires two assessors to make decisions about me, and those two assessors are very likely to be doctors. It seems to me that it is much simpler, much more uncomplicated, and it answers all of the problems there might be.
Mr Wessenger: I would just like to indicate that it is certainly the intention of the Consent to Treatment Act, and it is clearly in that act, that with an unvalidated power of attorney, the person who has the power of attorney can give that consent to treatment. But as you say, maybe there may be some need to clarify that.
The Chair: Mr Elliott and Ms Seguin, on behalf of this committee I would like to thank you for taking the time out this afternoon to come and give us your presentation.
Ms Seguin: In case people in the room might not have seen what a new, good living will looks like, I have brought some copies with me. If anyone would like to have them, they are welcome to them.
The Chair: If you would give them to the clerk, I am sure she would distribute them to any committee members who would like them. Thank you very much.
ALLIANCE FOR LIFE (ONTARIO) INC
The Chair: I would like to call forward our next presenters, from the Alliance for Life, provincial and national. Good afternoon. As you know, you will be given a half-hour for your presentation. The committee would appreciate it if you would keep your remarks to about 15 minutes to allow time for questions and comments from each of the caucuses. As soon as you are comfortable, please identify yourself for the record and then proceed.
Mrs Weidinger: I am Regina Weidinger. I am on the national board of the Alliance for Life, and a board member for Ontario. I am from Cambridge.
Mrs Jeffs: My name is Jakki Jeffs. I am the executive director of the Alliance for Life Ontario. I hope you have my oral presentation before you. On behalf of the Alliance for Life Ontario, I thank the committee for its work over the last few months on the proposed legislation. I have with me today a member of our national board, Mrs Regina Weidinger, who is present on behalf of our national association.
Alliance for Life Ontario represents 80 educational pro-life groups that work under an educational mandate to promote respect and protection for all human life from conception to natural death. We number approximately 50,000 members in Ontario and have a national membership of close to 200,000.
We have many concerns with the direction of both the Ontario government's proposed legislation and the two private member's bills.
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Our Ontario office first became aware of the government principles from a Dying with Dignity newsletter dated January 9, 1991. Marilynne Seguin, the executive director of Dying with Dignity, stated in reference to the legislation, "It is an important piece of work...and might eliminate the need for further legislative initiative in Ontario by Dying with Dignity."
You might better understand our concern with Ms Seguin's support of this proposed legislation when you hear two other comments made by her. In 1987 she was quoted in the Globe and Mail as saying: "The bottom line is economic. We can no longer afford to keep thousands of people alive as human vegetables and the AIDS question will bring this into strong focus." In 1988 she stated in the Ottawa Citizen, "It is unnecessary to legalize the living will in Canada, since all individuals in this country already possess the right to refuse medical treatment."
The organization Dying with Dignity distributes its own version of a living will and also a euthanasia declaration document. With Ms Seguin's focus on economy and her callous reference to terminally ill persons as "human vegetables," her support of the government bills is considerably distressing to our association.
Alliance for Life Ontario has been studying government Bills 74, 108, 109 and 110 and we applaud the initiative to ensure that incompetent Canadian citizens are protected and their rights ensured. However, we believe there is much confusion caused by the legislation and wish to confirm the following concerns.
Bill 74 and the definition of "vulnerable": "In this act, `vulnerable person' means a person who, because of a mental or physical disability, illness or infirmity, whether temporary or permanent, has difficulty in expressing or acting on his or her wishes or in ascertaining his or her rights."
It was our initial understanding that this legislation was directed to those who are permanently incompetent. With this definition of "vulnerable," each of us, having lost competence temporarily for whatever reason, could be assigned an advocate under this legislation. Consequently, it is feasible to say that a person could be assigned an advocate with power to make decisions concerning health who would then override the vulnerable person's spouse or family.
Bill 109, An Act respecting Consent to Treatment, subsections 7(1) and (2): We are extremely concerned and confused by this section. Are we to understand that if a person becomes incapable even temporarily within the meaning of the act, the person holding the power of attorney for health care becomes the decision-maker? This situation cannot be overridden by the incapable person, even if he or she becomes capable again. According to our understanding of Bill 109, subsection 7(2), that person will be unable to regain power to make his or her own health care decisions.
In many sections of Bills 74, 108 and 109, mention is made of an advocate explaining the rights of a vulnerable person to the vulnerable person. How does an advocate do this if the person is mentally incompetent to make decisions or understand the consequences of those decisions? Surely these persons will be unable to understand what rights are, let alone their implications or application. In theory this sounds extremely democratic, but it does not seem to be a workable option given that the persons being addressed are considered vulnerable or incapable within the terms of this legislation.
Subsection 10(1) of Bill 109, An Act respecting Consent to Treatment, reads, "When a health practitioner finds that a person who is 16 years of age or more is incapable with respect to a treatment, the health practitioner shall," and the following subsections elaborate on the procedure with respect to advising the person of the findings, meeting with the advocate, and exception, assistance and treatment delay.
Subsection (7) states, "This section also applies if the person is less than 16 years of age and has demonstrated a wish to give or refuse...on his or her own behalf."
We are most concerned at the apparent absolute neglect of the parental rights and the rights of the family of the incapable person mentioned in this section. Are we to believe that if a child of eight informed a health practitioner that he did not want to undergo treatment to which his parents had agreed, then an advocate would be informed and assigned to the child? What about the parental rights in this case or the rights of the families who have loved and cared for these individuals? Do we really believe that a state-appointed advocate knows more about what is best for the child than the parents who have loved, reared and cared for that child?
We have found this proposed legislation extremely complicated and confusing and we fear that, rather than helping vulnerable persons, the system that these bills collectively initiate appears to be fraught with ambiguity.
We are dismayed to see that the government is proposing to set up a structure which seems to give the power of health care to a bureaucracy and take it away from individuals, parents and families. I would like to illustrate that with one case that happened in the United States, and which I believe could happen here under this system should this legislation be passed. Mary Hier was 92 years old and had lived in hospitals for more than half her life. She thought she was the Queen of England. She was not terminally ill, but because of a non-malignant defect she had received food by means of a gastrostomy tube for over 10 years. In an unexplained incident, that tube became dislodged. The care facility sought to replace the tube, but her court-appointed guardian refused permission. The court, agreeing with the denial of permission, stated that implanting the tube was highly intrusive and a highly risky procedure.
Just as Mary Hier's case was being reported in a Boston newspaper, another story appeared in the same paper. It concerned a 94-year-old woman who was doing well following minor surgery to correct a nutritional problem. The surgery was performed on an outpatient basis under local anaesthesia. The woman's name: Rose Kennedy. The minor surgery: insertion of a gastrostomy tube. For Mary Hier, elderly, demented and without family, it was described as highly invasive and highly risky. For Rose Kennedy, matriarch of a rich and powerful family, it was minor medical procedure.
Only last-minute intervention by a Massachusetts physician, Joseph Stanton, and attorney Harry Ledoux, resulted in Mary Hier's tube being reinserted. At last report, Mary Hier continues to live comfortably and happily, still signing her name "Mary Hier, Queen of England."
Will vulnerable people like Mary Hier fall prey to the same kind of discrimination under the advocacy system? Will an advocate's decision on treatment override the patient, spouse and family, and rule all-powerful in a case like Mary Hier's?
We believe these bills should not be passed because they appear to set up an almost overwhelmingly complicated system whereby the state is gradually taking over the individual's decision-making power in the area of health care.
Concerning the private member's Bills 7 and 8, it is our understanding that currently a spouse or family member already has the right to make decisions on behalf of a spouse or family member. We can see no reason for this legislation, which appears to confer by law what is an inherent and practised right already.
Bill 8: We are totally opposed to this bill and request that it be defeated. It contains wording that can be so broadly interpreted or, indeed, has been so inadequately defined that it is dangerous. Our questions are: What does "life-sustaining procedure" mean? Are nutrition and hydration included in this definition? What is the definition of "medical procedure" or "treatment"? Many patients are on strict diets ordered by their doctors. Would this be included under treatment? There is no distinction made between ordinary or normal care and extraordinary care. Would this legislation mean that comfort care such as cleansing and toilet would be denied to a person? The definition of "terminal" is infinite. Taken in its broadest sense, we are all terminal from the day we are born.
There is at present an initiative in the United States by the Hemlock Society to include those in coma or persistent vegetative state within the definition of "terminal." Is that the understanding in Canada? These people, for the most part, are not terminally ill, although there is not much hope for an improvement in their situation.
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Bill 8 talks about "incurable, irreversible conditions." How are these terms defined? Will they include diabetes, asthma, arthritis? What is the definition of "imminent"? Two days, two weeks, six months, a year? There is no age limit given for the witnesses. Are we to understand that a person of any age qualifies for this position, even if he or she is incapable of understanding what he is witnessing?
In section 3 we read that a living will of a person is not valid if the person is pregnant. While we find nothing else to applaud in this legislation, we are pleased to note that the life of a pre-born child is protected in this proposal.
Under liability, section 6, it says that a person is not liable for damages to a person under the living will. The withholding or withdrawal of a life-sustaining procedure, which under this legislation could be as simple as food and water, results in the starvation and dehydration to death of a person. Is this not homicide? We question whether this legislation has the power or authority to redefine homicide. What is even more shocking to us is that a person only has to say that he believed the living will was valid and the previous section would protect him from punishment.
There is no definition of "health care provider" for the purposes of this legislation and therefore this opens the door to even wider abuse. This legislation also apparently totally disregards the conscience rights of health care personnel. What would happen if a health care provider could not in good conscience, either for personal, ethical, moral or religious grounds, take part in an act of omission under this legislation which would hasten or cause the person's death? This bill stipulates that a conviction of a health care provider under this legislation would be no more than $1,000 and imprisonment for not more than a year. We find it hard to understand how a piece of legislation that can be so broadly interpreted is so narrow in its concern for those who are unable to comply with its direction. It would appear that if you are willing to cause or hasten someone's death by withdrawing or withholding treatment, you will be protected under this legislation. However, should you be unable to participate because of personal, ethical, moral or for religious reasons, then unless you move "promptly," which once again is not defined, you could find yourself facing a huge fine and a year in prison.
In section 7, for the purposes of life insurance, it would appear that there is an attempt once again to redefine homicide. In section 9, while the bill states, "This act does not create a presumption as to the intention or wishes of a person who has revoked or has not executed a living will," we believe the presumption will be made that those persons without living wills will require everything to be done.
In conclusion, we remain in total opposition to both the proposed Ontario government legislation and the private member's bills. The fact that the Dying with Dignity group supports these legislative initiatives and the history of similar legislation in the United States confirms our position.
The living will, given force of law, is neither a benefit nor protection for people. Health care providers will be placed in unthinkable positions, and society is being duped into believing that living wills are necessary to protect doctors from patients and vice versa. The structure to protect health care providers who will assist, cause, or hasten someone's death by withholding or withdrawing life-sustaining procedures is being established. It will not be long before the lethal injection is seen to be a much more compassionate means of death than allowing persons to starve and dehydrate to death. The pro-euthanasiasts have called the living-will legislation the crack in the ice to begin the process of decriminalization and acceptance of active euthanasia and assisted suicide. We strongly recommend that this committee does not take into consideration the economic advantages of the living will, which by stripping people of their right to good medical care has the financial benefit of saving thousands of tax dollars. As a society, we believe it is our duty to care for all innocent human beings and to never sanction or indeed take part in their deaths, especially under the insidious guise of living-will legislation, which purports to empower people but in fact leaves them totally vulnerable.
We respectfully submit our submission to you.
The Chair: Thank you. Each caucus will be given about five minutes for questions and comments.
Mrs Sullivan: Once again we appreciate you coming before the committee with your views. I notice on page 3 you talk about the legislation being complicated and confusing and you fear that "rather than help vulnerable persons the system which these bills collectively initiate appears to be fraught with ambiguity." That is a matter of great concern to us in the examination of the bills. Along with many health care providers and agencies, we have called on the government to use these particular bills simply as consultative documents and put them forward in a redrafted form.
We certainly concur with the view that a codification of consent is appropriate, that a codification of substitute decision-making is appropriate and that advocacy for people who are vulnerable is appropriate, but these particular bills are so badly drafted and so confusing that neither the health professional nor the patient nor the substitute decision-maker, were that the case, would benefit from this particular package of legislation. I wonder, given your views about the ambiguity, the confusion and the collectivity of the bills, if you would concur with that position and make that kind of recommendation.
Mrs Jeffs: I am not sure if I could. Certainly I would be happy to take that back to our association and discuss it. I come to this without a legal or medical mind. My position as executive director lays this job squarely on my desk. I have looked at it very simply as a Canadian citizen and mother and part of a family with children. Maybe that is where part of the confusion, for me at least, would come. I am really pleased to find you have had the same problems but at a different level.
Mrs Sullivan: Is that not an important aspect of this, that these bills have to be understood not only by the health practitioner and by the lawyers but by the people who are going to put them into effect?
Mrs Jeffs: I totally agree with you.
Mrs Sullivan: You have talked about the confusion and you have talked about the ambiguity and the lack of clarity and understanding. That is certainly a matter of grave concern to us. We would appreciate it if you did go back to your board with that suggestion and ask it if it could respond to the committee perhaps even before our hearings are over.
Mrs Jeffs: I will certainly do that.
Mr J. Wilson: Thank you very much for your very interesting presentation. I cannot believe my colleague Mr Sterling could write such terrible legislation. It is as bad as the government's legislation.
Mrs Weidinger: Maybe he should have asked us for input before he wrote it.
Mr J. Wilson: He did of course cancel the debate in the House on his legislation when the government brought forward these bills. We are learning a lot during this process.
When it comes to care in the hospital or in a health care setting, when is enough enough? It is a common question I am sure you get asked. We already heard the Minister of Health and the deputy minister talk about rationing health care after age 70. They have already been quoted in the Globe and Mail as saying that so far it does not seem economically feasible to be giving people replacement lung operations after age 70; the economics of it are not justifiable in a health care system that is starving for cash. You can see there is a trend developing that your group is well aware of and fighting. I think the question in layman's terms is, when is enough enough?
Mrs Jeffs: I do not think anybody would disagree that there is a time when further surgical treatment or medical treatment can be finished. Up till now one assumes all the patients, doctors, health care providers and families have been able to make that decision. What I do not understand is why all of a sudden we feel that is not being done or that there is confusion and we wonder if every patient who has been in hospital up until now has been overtreated. The living will part of this private member's bill does not necessarily address that.
Mr J. Wilson: To answer your question, we are living in an increasingly legalistic society and the world is becoming so. Who makes the decision? You say leave it up to the health care practitioner, who says his current practice -- but many of them want increased protection, I guess, under the law if they are to make those decisions. Maybe that is the route we should have been taking.
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Mrs Jeffs: Actually, I would really like to see -- I presented on Bill 203 at the federal level, too, and the same comment was made there that many of the doctors want protection. But a doctor has not been taken to court in Canada, right?
Mr J. Wilson: Not in Canada.
Mrs Jeffs: Where are the doctors? Let's have some type of factual statistic that says most of the doctors are worried to death that what they do or do not do is going to get them in a court case.
Mr J. Wilson: As Health critic, I have had doctors in my office tell me that. In fact, many of the things they are doing now, taking extra tests and extra precautions, are for the very fact that they are worried someone would take them to court for not doing everything reasonably possible within their means right now to preserve life. When a socialist government is leading a discussion on rationing health care, then I tell the citizens of Ontario they had better be worried and you had better address these issues.
Mrs Jeffs: I totally agree with you, and I think most of our -- or at least my own concerns really come from the United States since 1977, when they went through this same type of debate, this argument for living-will legislation because doctors should be protected and patients have to be protected. When everything finally came down and the dust settled they realized that the way they were working before was quite okay.
But now all of a sudden we have living-will legislation which does not benefit patients. It actually means they give up their health care, which does save tax dollars. The latest initiative 119 in Washington state came from the Senate finance committee and, yes, that does scare me, that we have now a price on life, a price on health. To start seeing that it is now age-discrimination-based really does worry me.
I think the whole system needs looking at, not just the elderly, the disabled or the terminally ill -- the people who are already in the hands of the health care providers. They are the vulnerable people, not competent people, but those vulnerable people.
Mr Sterling: Given that a living will is a legal document in Ontario and Canada at this time, does it not make more sense to you to try to formalize the document to some degree to ensure that it has been properly witnessed and properly attested to when the person was competent to make that living will? Does it not make more sense to enshrine it in legislation than leave it as it is?
Mrs Jeffs: Does a living will actually have the force of law?
Mr Sterling: Yes.
Mrs Jeffs: I was not aware that it had, to be honest. I think the living-will legislation you propose, which I had assumed gave force of law to advance directives --
Mr Sterling: No, it formalizes it.
Mrs Jeffs: It formalizes it. Okay. What I do not understand about it is that the living wills have to be so broad. You are asking somebody when they are competent, fine, to make medical decisions based on a time, however many years ahead, and situations they cannot foresee. You might be in a car accident. You might have had a stroke. How do you make those so specific in order to protect that person, because the scenarios are trillions, are they not? How does that legislation do that?
Mr Sterling: There is no legislation now, but it --
Mrs Jeffs: How would your legislation do that? How would your legislation protect people so when they put "withdrawal of treatment" it does not mean withdrawal of everything a year, two years before they die? If they have an incurable disease -- which, by the way, diabetes is -- how are they protected?
Mr Sterling: Basically you protect the person in society, I guess, in terms of any kind of written instruction he might have, to make certain that the person was competent when he said what he was saying and that people who witnessed the document were not benefiting from the fact that this person might die or whatever, in terms of the treatment.
I am just intrigued. If it is the law at the present time, which I believe it to be, that you can make a living will, by formalizing it you will have better living wills in the end, because they will be more specific, and you will not have people who may or may not have been competent making them. There will have to be determination by the witnesses that these people were competent.
Ms Carter: I understand your fears, but really, I feel there is no necessary connection between what we are proposing and unauthorized withholding of life support services or euthanasia for economic reasons. I do feel that you have slightly misunderstood Bill 74.
On page 2 you are saying a "`vulnerable person' means a person who, because of mental or physical disability" and so on, "has difficulty in expressing or acting on his or her wishes or in ascertaining his or her rights."
You are assuming that this person is really unable to express those wishes, where I think it is clear that it is meant to apply to people who maybe have difficulty, but nevertheless do have wishes that if somebody takes the trouble to ascertain they can express. The advocates are not meant to be dealing with people beyond the point where they really can express any wishes.
Now, we have had this point argued to us, that if you pay close enough attention people can usually get messages through, but the intention is to ascertain the person's own wishes, so when you say an advocate's power to make decisions concerning health would then override the vulnerable person's spouse or family, I do not see that danger because, by definition, it is going to be the person's own wishes.
Having said that, I think what worries me and probably a lot of people is the cruelty of keeping people alive beyond a certain point, and of course modern technology has meant that people's suffering can be prolonged to a much greater degree than might have been possible when natural death would have overtaken them at an earlier point.
I thought I would ask you to comment on the Nancy B. case that we all know about, and which has just happened, which was a clear instance of somebody who decided that her own life was not worth living and those wishes were ultimately acted on.
Mrs Jeffs: I guess we disagree a little there. The Nancy B. case, in my understanding, was a right-to-refuse-treatment case, which she had every right to do. I believe she decided at that point that the respirator was too burdensome for her and had it switched off. I really was amazed to see it come to the courts at that point and I actually made the comment that it was being used by the euthanasia people to once again cloud the issue, because the issue is very clear around the Nancy B. case legally.
Ms Carter: So you would have no problem with that?
Mrs Jeffs: No, I do not have a problem legally, but I think in my heart, yes, I do. I wonder, why was she where she was? Was she offered all options? Was she depressed with that disability? There are so many questions that come to mind; but as a strictly legal case over right to refuse treatment, no, of course not. She had every right to do that.
Ms Carter: To me, ultimately that is what is important, that the person herself can make the decision, whether at the time or, if she wishes, previously. Thank you.
The Chair: Mrs Weidinger, Mrs Jeffs, on behalf of this committee, I would like to thank you for taking the time out of your busy schedule and coming and giving us your presentation this afternoon.
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ALZHEIMER ASSOCIATION OF ONTARIO
The Chair: I would like to call forward our next presenters from the Alzheimer Association of Ontario. As you are aware, you will be given a half-hour for your presentation. The committee would appreciate it if you would keep your comments to about 15 minutes to allow time for questions and comments from each of the caucuses. As soon as you are comfortable, could you please identify yourself for the record and then proceed.
Mr Trueman: My name is Peter Trueman. I am the spokesman for the Alzheimer Association of Ontario on this occasion. With me are John Ellis, the executive director of the Alzheimer Association of Ontario, and Wayne Gay, a lawyer on the association's board. I hope these two gentlemen will be able to answer any questions you may have that I cannot handle.
Let me say on behalf of the Alzheimer Association of Ontario how very pleased we are to be able to make this presentation before Bills 74, 108 and 109 proceed any further. The association, although in sympathy with the intent of the legislation, is afraid its application would needlessly complicate care giving and medical treatment for Alzheimer's patients by adding a complex and unnecessary layer of external decision-making.
In terms of Alzheimer's disease, the legislation has the effect of trying to fix something that is not broken. We feel that the three bills would create administrative backlogs and long delays in treatment, might put a damper on research, could result in higher costs for families and an even larger health services bill for Ontario taxpayers.
I must say that those of us who have had long experience with Alzheimer's and are aware of the sacrifice and dedication patients get from a vast majority of care givers resent the intrusive, somewhat paternalistic tone of the legislation, particularly as applied to members of Alzheimer's sufferers' families. Thus we believe that Bill 74 should be abandoned and the remaining legislation should be revised.
I would like to make it clear at the outset that I am no expert on Alzheimer's, senile dementia, or other forms of cognitive impairment, although I have had some firsthand experience with disabling illnesses in relatives and close friends.
This would mean nothing, however, if my wife and I had not also been the primary care givers for my late mother. She lived with us from 1984 until it became necessary to have her admitted to a chronic-care facility about a year ago. Since it was and continues to be up to me to make a living, it was my wife, of necessity, who was under the most strain. I will be for ever grateful to her.
In my estimation, only primary care givers and medical specialists can have any idea how debilitating the illness can be, not just for the patient but for those who choose to look after them. Mercifully, my mother died two months ago, within a decade after Alzheimer's disease was first suspected. She would have been 89 at the end of January.
Before I go on to a critique of the legislation, I would like to make some basic points about Alzheimer's and the nature of the illness. In this age of computers, it is easy to overlook the fact that the only memory bank which is indispensable for human existence is the mind. For the growing number of Canadian care givers who live with Alzheimer's victims, this is a simple truth that is underlined starkly and relentlessly every day.
The incidence of Alzheimer's is rising sharply, in part because diagnostic techniques have been improved, but mostly perhaps because people in general are living so much longer. The older one is, the greater the risk. Once a Canadian reaches the age of 65, for example, the chances of contracting Alzheimer's are nearly one in 10.
In 1990, some 300,000 Canadians were believed to have Alzheimer's. There are 120,000 in this province alone and their numbers are expected to rise by about 50% over the next decade. When you compare such figures with those for other -- some of them higher-profile -- illnesses, you begin to realize that Alzheimer's has become one of the major afflictions of our time. In that same year, 1990, in Canada, there were some 200,000 known cases of ileitis and colitis, 60,000 cases of Parkinson's disease, 50,000 cases of multiple sclerosis, 20,000 cases of muscular dystrophy and 2,500 cases of cystic fibrosis.
Alzheimer's has become not simply a major medical problem numerically. It is a horrible illness, not just in what it does to the victims but in what it does to those around them. Little is known about what causes it and there is no known cure for it. The patient never improves, although there are frequently long periods in which little change is obvious.
Autopsies show that the nerve endings in the cortex of the brain degenerate and disrupt the passage of electrochemical signals between the cells. As the disease progresses, according to one of my layman's reference books: "The changes in the nerve cells produce simple forgetfulness and increasingly more noticeable memory loss. Changes in thought, language, personality and behaviour can eventually render the person incapable of taking care of himself or communicating his needs to others."
More than many other illnesses, Alzheimer's is a family disease. If a wife gets it, for example, it means that her husband must face not only the gradual loss of his life's partner but the gradual emergence of a new dependant. Before my father died in 1988, it was the loss of the woman he loved rather than the transformation from partner to dependant which tried him most deeply. I will never forget the agony in his voice when he told me how out of touch mother was becoming and how difficult he was finding it to keep his temper in the face of increasingly circular conversations.
I know what he went through, because when he died it was I who bore the brunt of these repetitive, open-ended dialogues, and I am no saint either. There were times, I know, when my impatience showed as I answered the same question a dozen times in the course of half an hour, times when my eyes must have glazed over after the fifth or even the 10th repetition of the same anecdote. The only point of interest after one has heard the same story that many times was the subtle ways it changed from repetition to repetition. Who said what and to whom could alter slightly. Even the punch-line could acquire a new emphasis. This was a painful process for someone who knew all the stories and who loved the storyteller. Our memories, after all, are what define us as people, and when we lose them we begin to lose our identities.
Although this is hard on loved ones, of course it is immeasurably worse for the victims themselves. Mercifully perhaps, they become increasingly confused and uncertain about what is happening. It is frequently obvious to care givers, however, that they realize something is terribly wrong, even if they cannot put a name to it. The sufferers become frightened about their unavoidable voyages into the unknown.
Ultimately, the Alzheimer's victim loses not only the spouse, whom he or she no longer recognizes, but sons and daughters, grandchildren, great-grandchildren, relatives, friends and colleagues. In the advanced stages of the illness, those who have it live in a world of strangers.
At some point literacy vanishes. Victims find it increasingly difficult to write completed sentences because they cannot hold a train of thought. Mother would labour for half the afternoon to make an entry about the weather in a diary she had been keeping with ease for years. Those who escaped into books all their lives, like mother, find suddenly that they can read no longer because they forget what they have read on the previous page or even in the previous paragraph. Mother read and re-read the first page or two of the same detective story, a favourite Agatha Christie, almost daily during the last few months she spent with us. She could not get beyond the opening sentences.
With the memory loss, the patients lose all experience and can no longer look forward to life's small pleasures because they do not remember what they are, and so in the end they lose themselves. They may forget how to tie their own shoes and when to go to the bathroom. They forget ordinary household dangers -- stairs, fire, electricity -- and cannot be left on their own unless they are somehow immobilized.
Personalities can change. Men and women who never raised their voices to anyone can become caustic, argumentative and aggressive. Agreeable people can become negative about everything.
They can forget their own names and where they are. Sometimes they develop a distressing tendency to wander. Wandering may be caused by stress in a new situation or unhappiness in an old one. Patients may set out to revisit an old stamping-ground and forget the route or destination. They may lose sight of the person who is supposed to be looking after them in the middle of a busy supermarket or shopping centre and become disoriented.
Losing the memory does not simply end intellectual growth, it reverses the learning process. When memory fails us, we revert eventually to childhood and ultimately to infancy. This is no less wrenching for the care giver than it is for the victim.
The care givers, given all the pain, time and effort involved in looking after an Alzheimer's patient, ought to be treated like an endangered species. They deserve more, in our view, than this legislation.
There is, of course, community support for the person looking after a loved one with Alzheimer's. First and foremost, there is the Alzheimer organization itself and its many local chapters. There really is comfort in shared experience. In my own area in Kingston, the Victorian Order of Nurses operates an Alzheimer's home program in which VON nurses lend a weekly hand with bathing and hygiene. Local programs provide companions and homemakers two days a week. In Kingston, at least, St Mary's of the Lake Hospital, God bless it, takes in patients for a month at a time to provide some much-needed respite periods for home care givers.
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But there comes a time, even with all this help, when keeping the patient at home is no longer possible. It may be a matter of the patient's safety, it may be a failure of the care giver's will and nerve, it may be simple exhaustion or it may be a marriage that is beginning to come apart under the strain. There may be unbearable financial pressures. Whatever the reason, sooner or later common sense dictates that the patient go to a long-term care facility, if one can be found with a vacancy. In my experience, when that happens, no matter how pressing the need for relief, care givers are frequently assailed by feelings of guilt. They feel they have not done enough, that perhaps they should have tried a little harder to bear the burden a little longer.
The care givers I know who are members of the Alzheimer association are wonderful people. They deserve to be supported not just by society around them but by their governments. We should all be doing everything we can to make their tasks easier, not more difficult. And more difficult, in my view and in the view of the Alzheimer Association of Ontario, is precisely what this legislation is likely to make it.
The Advocacy Act, Bill 74, is particularly inappropriate for Alzheimer's sufferers. The act seeks to empower the disabled who have difficulty in expressing or acting on their wishes or in ascertaining or exercising their rights. To ensure that the Advocacy Commission deals with them fairly, the act stipulates in section 6 and others that "A majority of the members of the commission shall be persons who have or have had a mental or physical disability, illness or infirmity." Let me assure you that with Alzheimer's there is no one who fits the "have had" category. It is a progressive illness and it is inexorable. Its victims do not recover and return to productive lives. I would like to know if the members of this committee really believe that someone suffering from the illness I have spent the last few minutes describing could add anything to the deliberations of a body like the Advocacy Commission.
The truth of the matter is that my mother had only a fleeting notion of what Alzheimer's was, and never really understood that she had it. Throughout her illness she would ask me, "What did you say it was again?" When I had finished telling her that it was Alzheimer's and explaining it for the hundredth time, she would nod cheerfully and venture what became her perennial last word on this matter, "I suppose it's just old age."
The first section of the Advocacy Act speaks of the empowerment of vulnerable people but does not explain how one can safely empower the incapable. No one could fault the bill's desire "to promote respect for their rights, freedoms, autonomy and dignity," but in the case of Alzheimer's patients, the intrusion of an expensive, potentially inexpert and slow-moving bureaucracy between those who have the illness and the family members and doctors who look after them threatens to be self-defeating. Such a bureaucracy seems much more likely to diminish their rights, freedoms, autonomy and dignity than enhance them.
How could advocacy services, in the words of the bill, help Alzheimer's patients "make their own decisions, exercise their rights, speak on their own behalf, engage in mutual aid and form organizations to advance their interests"?
The more one reads the legislation, the more obvious it becomes that it was written with other illnesses or disabilities in mind, or was at the very least written by people who had no experience with Alzheimer's. As far as we of the Alzheimer association are concerned, Bill 74 is a square peg being jammed into a round hole.
When you add to the bill's inappropriateness for Alzheimer's patients the draconian powers it gives advocates to enter premises on suspicion and without a warrant, to meet vulnerable persons privately and to gain access to any document or records, it becomes, quite simply, intolerable.
Bill 108 on substitute decision-making, although I see it as less of a problem in some ways than Bill 74, is also disturbing in that after incapability has been declared -- that is subsection 16(5) -- advocates are still required to meet the patients formally, notify them of and explain to them the significance and effect of the incapacity certificate, explain their rights to refuse the statutory guardianship of property, and then ask them whether or not they want to refuse it.
Alzheimer's patients are very often good actors and actresses. I can recall meetings with old friends of the family at which mother behaved charmingly, listened politely, made conversation and generally gave the impression that she was glad to see them all again. On the way out they would say to me, "She seems fine, just like her old self," or words to that effect, and perhaps even look at me strangely, as if I had exaggerated her incapacity. When they had gone, a puzzled frown would return to mother's face and she would say, "Who were those people anyway?"
The point is that in those circumstances she would say what she was astute enough to realize people wanted to hear. In other circumstances later in her illness she could be quite negative. She would say no to any question or any suggestion. If you asked whether she had eaten, for example, she would be quite capable of saying that she had not had anything all day even if she had had a good lunch 10 minutes earlier.
So unless the advocate, or any other intervenor on behalf of the disabled person, knows a good deal about the nature of the illness, the results of interviews and cursory investigations could be very misleading. There is no assurance in the legislation, at least that I can find, that the advocates will have the necessary medical training.
It is very difficult to establish the capability of an Alzheimer's sufferer, it seems to me, because in my experience clarity of thought and memory can be like a loose electrical connection, unreliable and intermittent. When mother was still living with us, and before we realized how deeply Alzheimer's had affected her, it became apparent that one section of her very modest will which mentioned specific stocks and numbers of shares had been overtaken by events. There had been a three-for-one stock split since the will was written. This left two thirds of her holdings unassigned. Since mother had clearly intended to divide the stock in question between two people -- I was neither one of them, incidentally -- I thought it would be better, as the executor, if the will was changed to reflect the new situation.
I called my lawyer, explained things to him, and he came out to the house as a witness. My wife and I, as interested parties, were barred from the room and the usual legal test for competence was given. My lawyer and his colleague came back to us after a while and informed us that in their view mother was perfectly capable of making changes to her will. The problem was, when we asked her about it later, the change she favoured was to give all of her stock to me. She had forgotten her original intention, one I was certain that in normal circumstances she would not have dreamed of changing. She was not capable, in other words. In the end, as the lesser of two evils, we decided to leave the will alone.
There is nothing in Bill 108 which convinces me that the measures it proposes for substitute decision-making would be particularly appropriate for Alzheimer's patients.
I have even more problems with Bill 109, An Act respecting Consent to Treatment. Under section 16, unless I had previously been established as mother's attorney for personal care purposes, I would have been number five on the list of people whose consent would be sought in the event some change was needed in mother's treatment.
In my view, and in the view of the association, the list is backwards. It should begin with the person who has been given power of attorney, usually a family member, and should progress through other relatives to the public guardians. Being elbowed out of the decision-making process in this way suggests that, by and large, family members are not to be trusted. People have rebelled for smaller abuses of their rights than that.
My mother had all kinds of medical problems in addition to Alzheimer's. She had arthritis most of her life. Towards the end she developed congestive heart failure. She had problems with her eyes and with her teeth and wanted nothing to do with eye doctors or dentists. She fell five times in her declining years, breaking her pelvis twice, her hips twice and cracking her spine once because the arthritis had left her weak and unsteady on her feet.
What if Bill 109 had become law before mother died and she had fallen and broken her arm, cracked her rib, cut or burned herself, or had done herself some other injury not likely to cause her, as the act puts it, "serious bodily harm within 12 hours" if it were not treated promptly? And what if in her pain and confusion she refused treatment, as in fact she always did?
If Bill 109 were in effect and the doctor had reason to believe mother was not capable, his hands would be tied by her refusal of treatment. The professional advocate would have to be summoned to convey mother's wishes to the doctor and to explain to her that the doctor's decision to start treatment could be appealed. The advocate's explanation would be sufficient, the act suggests in subsection 10(2), even if mother did not understand it.
If mother decided to appeal, the advocate would have to bring in a lawyer. The case would then go to a review board, which could be held up to seven days later, where a panel would decide if mother were competent. Even if she were deemed incompetent, as seems probable but not certain, the advocate would then have to explain to her that she could appeal the panel's ruling. If she decided to do that, no medical treatment could be given until a final decision was handed down.
No son worthy of the name, or doctor worthy of his oath, it seems to me, would submit meekly to this kind of rigmarole if an incapable mother or patient were in pain, and so the temptation to break the law and take our chances would be very strong.
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I put it to you that in the case of Alzheimer's patients, the legislation is not only ridiculous but, because it fails to protect patients from their own dementia, it would, if adopted, tend to put them at an even greater disadvantage than they are now. We are also dismayed by subsection 15(1) of the bill designed to forbid invasive procedures on incapable persons when the primary purpose of such procedures is research. The association is afraid that this might prevent persons with Alzheimer's from participating in drug trials which could one day be of significant benefit to them and their fellow sufferers. For heaven's sake, let's rethink that part of the legislation as well.
In closing, I would like to read you an excerpt from an article in The Observer, July 7, 1991, by a much better writer than I am, Michael Ignatieff. He lives in England now, but his father, George, was a distinguished Canadian public servant. Mr Ignatieff speaks feelingly on the subject of Alzheimer's because there have been three generations of the disease in his own family.
"The carer's burden," he writes in The Observer, "is not just a matter of making sure that patients don't wander, don't leave the gas on, get properly washed and put to bed. It's also the strain of repeating the same thing a thousand times, of trying to make contact with those vacant, unfocused eyes. Carers have needs too and yet only the sufferer's needs are met.
"What care givers need above all else is a respite. Caring for Alzheimer's patients can kill you. There should be day care and residential centres as well as a domiciliary nursing network so that primary care givers can get away for a break.
"At the next election, when we get our regular doses of rhetoric from politicians of all parties about the importance of family life, we should be ready with one question: Are you in favour of respite care for families who care for the demented and the disabled?"
Not a bad question in my view, even in Canada, and it suggests what might be a more productive way of spending $20 million to help promote respect for the rights, freedoms and dignity of Ontario's disabled. Surely helping people and their families to help themselves would be more useful in the long run than creating more intrusive bureaucracy; and it would do something more than pay lip-service to the pious hope contained in clause 1(f) of Bill 74 that the legislation should "acknowledge, encourage and enhance individual, family and community support for the security and wellbeing of vulnerable persons."
Thank you very much.
The Chair: Thank you. Each caucus has about two minutes for questions and comments. Mrs Sullivan.
Mrs Sullivan: Thank you very much. That was, I would say, a very impressive, articulate brief, speaking particularly about the special nature of Alzheimer's. In fact, many of the things you talk about move over into other areas of illness and disease, and I am thinking particularly of stroke, in which many of these similar circumstances exist and so on.
I was interested that your recommendation is to abandon Bill 74 and revise Bills 108 and 109. My impression is that you see substantial revision required to Bills 108 and 109 for them to be acceptable. Our position has been that since these bills were put forward as a package, they should be withdrawn and redrafted as a package. I wonder if you would comment on that potential situation and if you see a place, for example, for advocates in situations where there are no family or friends as care givers.
Mr Trueman: I think my colleagues have thought more carefully and in more detail about the legislation in that respect, and perhaps they would like to answer that question.
Mr Ellis: You are right. We have similar views on this. Our idea is that Bills 108 and 109 would require revision if you abandoned the Advocacy Act, so if we take away the role of the advocates as it is envisaged in the legislation, that will automatically require revision in those two other bills. However, the concept of power of attorney for personal care, for instance, is something that we can support. They have to be simplified, though, and cleaned up a lot.
Mrs Sullivan: Have I got half a second left?
The Chair: Actually, 30 seconds.
Mrs Sullivan: Okay. Then where that leads is to the next question regarding the usefulness of advocates or the expansion of funding or services through existing agencies in order to provide services to people who do not have family and friends or an advocacy agency such as the Alzheimer association, where indeed there may be some assistance to ensure accountability and, I suppose, individual authority, autonomy in decision-making to people who do not have supportive assistance.
Mr Trueman: There is no question that people who do not have anyone to speak for them need someone to speak for them. We are talking here, though, about the vast majority of individuals who have Alzheimer's disease and do have personal care givers with them. I think it is important to focus on that group and not get diverted. This seems to be part of the problem with the legislation. A very small minority of individuals have been catered to, in a sense, and a whole system of legislation built around them. When you are developing legislation, I think it is time to stop asking about the very small number of people and focus on the kind of legislation that is going to be beneficial for the large majority of people.
There is potentially a role for a small number of advocates, yes, for those individuals who have no one to speak for them, and I think our position is fairly clear that there are vulnerable people who require some assistance in that regard. But when it comes to drafting legislation that affects such a broad population as this, we want to focus in on the large majority of people.
Mr Sterling: I do not know if you recall that when I was secretary for justice, I worked very closely with the Alzheimer society. I was basically the instigator of the durable power of attorney dealing with property. Up to that time, a person could not make a power of attorney past the time of competence to incompetence, and had to go through a court procedure. I have gone through an experience not unlike Mr Trueman's in terms of dealing with a parent who was suffering from this very debilitating disease, so I understand, to a very great degree, your experiences, Mr Trueman.
I am not willing at this time to say, "Do away with Bill 74." I just find Bill 74 such a bare skeleton in terms of what these advocates are going to do, what their training is going to be, and particularly their interrelationship with the other advocates, and primarily the advocates that most of us know, and that is the family members. There is no relationship between the professional advocate and how that advocate interrelates with the family. When does that professional advocate step out of the situation and the family one walk in? The reason I would say "Junk Bill 74" is because I believe that there has not been enough thought about how these people are really going to function when they are out there. I think the people who are supporting them have a very different idea of what the role of the advocate is, versus the people who perhaps drafted this piece of legislation.
At any rate, let me ask you a specific question about the consent procedures in this act. I think the government has laid itself bare to significant criticism, which it received this morning from a joint coalition that basically said, "Junk all of the legislation," by not bringing forward amendments, as it was recognized that there were real problems with the legislation. One of the suggestions I have heard, in terms of the consent, is that you would not necessarily call an advocate in unless the incompetent person requested that advocate. In other words, the first question to the incompetent person would be by the health care provider, perhaps: "Do you want an advocate to come in and talk to you?" Would that remedy your concerns with regard to the consent procedure?
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Mr Trueman: Speaking from my own experience, it would have left mother absolutely cold. She would not have known how to handle that. It would of necessity have to be a leading question, and she could respond one of two ways depending on her mood on that particular day: She would flatly say no or she would say -- but she would not understand what it was all about in the latter stages of her illness.
Mr Sterling: I do not want to use your experience, Mr Trueman, because I know your motives were correct, but how would you protect a mother who was perhaps not being treated as well by her family as we demand in society?
Mr Trueman: I am not sure about that. Do you have ideas about that? We admit the need, as we said throughout.
Mr Sterling: Because of the frustrations of Alzheimer's, it is not without the possibility of thinking of abuse of the Alzheimer's patient.
Mr Trueman: I know, but look, we are talking about 120,000 people in Ontario. You go through that legislation as I tried to from the start; even the preambular sections obviously do not fit and do not apply to Alzheimer's patients. You go through all of Bill 74 with Alzheimer's people in mind and rewrite it, then perhaps something might come of it. But how many people does this piece of legislation affect? It cannot be, what, 200,000, 300,000, 400,000? If it simply does not apply to 120,000 of them at all, surely that is reason for doing something to change it.
Ms Carter: Just to pick you up on that point, this act cannot apply to everybody, and it seems to me that Alzheimer's patients who, as Mrs Sullivan said, are looked after by family and friends and so on, or who are so incapable that they cannot express really meant opinions, are not within the territory of this act. I do not see that as a problem. It deals with the people who do come within its territory. In other words --
Mr Trueman: But you interpose between people who have good and competent care givers and the patients; you impose a new level of bureaucracy.
Ms Carter: I guess what we are saying is that is not intended to be the case. The Advocacy Act would apply only in the case of people who do not have that and only, again, if they are capable to some degree of expressing their opinions.
Mr Trueman: But no such exemption is made in the bill.
Ms Carter: Okay, I have taken that point, but I want to raise another point. You mentioned the unsuitability of Alzheimer's patients to be on the commission and I think that is correct, that neither the victims themselves nor the families are actually likely to become members of the commission.
The intent of the act is to keep the commission consumer-controlled and obviously that has to be limited to those people who come within the category of consumer but who are capable of performing that kind of function. That does not mean there will not be a role for care givers and others as advisers, and certainly expertise and advice from those people who will be listened to, particularly regarding education and training of advocates, that kind of thing.
You may notice also that under section 15 seniors are given as a group that will be represented on the --
Mr Trueman: Commission.
Ms Carter: Well, this is the group that is going to select the commission. It is one stage removed. That is people representing persons 65 years of age or over, and it seems to me that category is quite likely to take a particular interest in Alzheimer's because, after all, they themselves run a very large future risk of getting it, and --
Mr Trueman: Since women, too, are so overwhelmingly designated as care givers, I would think the women's movement would be extremely interested in this as well.
Ms Carter: Yes, but then, of course, these categories do not exclude that in any way, and given that more women maybe survive some of these things they would tend to be more represented anyway. Do you not agree that seniors might --
Mr Trueman: Yes, I think they would have a special understanding of the illness, more so than the younger among us.
Mr Ellis: However, I do not think it would be wise to base legislation on the assumption that because certain people might end up getting Alzheimer's disease they have a special insight into the role of such a commission. The overall view we have is that we are afraid that when you get advocates out there, who in this legislation really have considerable power, without the kind of understanding required to deal with situations such as Peter has been describing with his own mom, you run into very risky situations.
The Chair: Mr Gay, Mr Ellis and Mr Trueman, on behalf of this committee, I would like to thank you for taking the time out to come and give us your presentation today.
JO PETERSON
The Chair: I would like to call our next presenter, Mrs Jo Peterson. You will be given a half-hour for your presentation. The committee would appreciate it if you would keep your remarks to about 15 minutes to allow time for questions and comments from each of the caucuses. Would you please identify yourself for the record, and then proceed.
Mrs Peterson: I am Mrs Jo Peterson. I am from Hamilton, Ontario. I am a family member and a member of the Hamilton chapter of the Ontario Friends of Schizophrenics. It is my intention this afternoon to tell you my personal story, and then to read to you what I see as the weaknesses and strengths in the acts, and to give you a summation of same. I understand I have 30 minutes for this presentation and I will do my best to get it within that time limit.
I am concerned that the difficulties we encountered in seeking help for our daughter will be further compounded by the introduction of the proposed legislation. We see our family as being a pretty normal family. I have been married to the same man for 40 years and have three children. All my children were considered to be intellectually above average. Our youngest daughter was considered to be the brightest. All three attended university. Two graduated with degrees. Our youngest daughter did not graduate because she developed an illness that is known as schizophrenia.
When we know what we know now, we can look back and see some changes in her behaviour as early as grade 12. She was withdrawing a bit from the family circle. There was some lack of concentration, and there was some use of foul language. At her graduation party, which we orchestrated for 20 people, two turned up. We were puzzled and we questioned her about this. She was very vague. She said the kids did not like her, the teachers were tough on her. When we asked the two students who attended, they said: "She's a loner. She's extremely bright. The kids don't like somebody who's extremely bright, and maybe your party was the last on the list and they didn't have time to attend." Well, I knew that was incorrect, because all kids go to all parties and try to take in as much as possible.
When she went into grade 13 she was saying the same things about the students and the teachers at school, but she changed her schooling three times during that year, and we questioned that. Once it was with our permission, twice without. Again she said the teachers were not understanding her clearly. When I approached a teacher about this, he said to me: "You have an extremely bright child. She writes with great spurts of brilliance. Kids don't seem to like people in that group."
He showed me an essay she had written. She got A-plus, and he wrote on that, "signs of brilliance." But did he read it? I questioned that. I questioned our school system and I questioned his care for his student, because there were jumbled thoughts within the essay. I asked him about that, and he said, "Your daughter said she was thinking of some other things and just jotted them down and forgot to erase them." I saw those remarks as something that was mind-altering, and what I want to tell you here very clearly is that schizophrenia is a mind-altering illness and that should not be overlooked.
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She went on to university, naturally, because she was an honour student and several universities wanted her to attend. She selected one quite a distance from home, and it was not too long before we were getting letters from her with envelopes that contained religious notations. I am not going to try to tell you that we are overly religious, because we are not, and we wondered about that. She was saying the same things about her professors and the students that she had said in the past, but now she was saying that kids were jumping out of her locker, hiding under her bed, and that somebody was talking to her but they were never there. It did not take us too long to realize that she was hearing voices.
We went down to the university because she called one evening and said, "I just smashed a mirror and I want to kill myself." When we went down we interviewed some of the students, and they said: "Your daughter is not a person who attends the pub. She's not into the drug scene and she's certainly not into the sex scene. She's definitely a loner -- very, very intelligent, maybe a little eccentric."
When I talked to the dean, he said: "She's very intelligent, probably eccentric. Kids, we are told, tend to stay away from the bright ones -- first time away from home, having trouble settling in." We wondered.
We tried to get her to come home. She refused. She said, "Next year, I will go to another university closer to home." She did very poorly -- a wasted year. She talked at the other new university about kids again hiding in her room, someone talking to her, but now they were tormenting her. But there was nobody there. She started to talk back to these voices.
At the year-end we talked her into staying home so we could observe her more closely in trying to find some answers to what was happening. It was not too long before we saw some very strange behaviour because now she was in the relaxed atmosphere of the home. When she was at university, she was able to mask some of those feelings and pull herself together enough to be elected as secretary of the student body -- and that is another thing: When police are called to crises in homes, sometimes the person who has the illness can mask those feelings, can pull it together and the scene is not the same and so therefore there is no help.
What I noticed was that if I was walking anywhere in the house or on the street and I turned quickly, we would be face to face, almost noses touching. If I got in the car, she got in the car with me. If we went out for an evening, she phoned several times. She became very suspicious of my actions and she accused me of things that I would never think of doing. Then she decided to tell the neighbours and it became more embarrassing -- one time running down the street screaming. We did not know what to do. We called a psychiatrist friend, and he said: "She probably thinks you're more ill than she is. You're not going to get help. Have you read the act? The act clearly says, unless she is a danger to herself or to someone else you haven't got a hope in hell in getting help for her." We thought about this and found it very difficult to believe.
One night we were awakened by horrible screams and rushed into her room. We did not see a young woman. What we saw was a small frightened child in a corner of the bed in a foetal position screaming that animals and snakes were crawling all over her and asking us to get them off her. The look in her eyes was one that I will never forget, and when I reached out for her the fear from her body generated through mine. It was an experience that I shall never, ever forget.
The next morning I called the psychiatrist friend and told him what was happening, and he said: "Your daughter has some kind of brain disorder. Schizo-affective maybe, maybe manic-depressive, could be schizophrenia. But," he said, "you're not going to get help. Is she violent?" I said no. "Has she hurt you?" "No." "Has she hurt herself?" "No." He said, "Then you can't get her into the hospital because she's not a danger to herself or to you. But," he said, "she'll probably become suicidal, and all I can say to you is good luck and I'm sorry."
I looked at my husband and he was totally devastated, and I wondered what this would do to him, because I am the much tougher one in the family. My husband travelled a lot and I had the children to cope with more than he did. We thought the only thing we could do is to wait and see what happened. But we did talk her into going to see our family physician, and he said, "You're very depressed, and it's a good thing you're not going back to school and are staying in your home." When she came home and said, "I'm depressed," I looked at my husband and said: "Is this the way depressed people act? I hardly think so." So we watched and we watched and we waited, and after a few months my husband could not stand this any longer and he said, "We'll have to take her to the hospital, and somehow we have to get help."
Well, I am sorry to say that we literally threw her into the car. We struggled, almost having an accident getting to the hospital, and when she realized what we were doing, she became very frightened. We explained to her, "We're not having you committed; we're trying to seek help for you."
When we got to the hospital, to get her into the hospital we had to drag her by her hands and feet across the floor of the garage until we could get some assistance. Needless to say, when we got into the doctor's office, we were taken first, because the office cleared out.
They brought down a psychiatric team to look at her and they said: "She's not a danger to herself. She's not a danger to you. There's nothing much we can do for her and she seems competent." Competent? What does the word "competent" mean? "Competent" seems to mean so much to different people. We saw her as not competent; they saw her as competent. The act has to clearly define the word "competent." I have some tough times thinking about how advocates will define "competent."
We stood there, and all we could do was hope and pray that she would say in public, to the doctors, what she had said to us, and finally she did: "I would like to kill myself," and within two seconds she was being admitted.
We left the hospital thinking, "What kind of system are we putting her into?" If you are physically disabled, you walk down a hall and people open the doors and beckon you in, because they have got the goodies for you, but if you have a mental disability, you walk down the hall and you do not get in the door, they shut it in your face.
I thought: "This is my country, Canada. I am a taxpayer. This is my province, Ontario. They say they offer universal health care of the best quality to all Canadians. Aha, but I didn't read the small print: `Except if you have schizophrenia.'" We have the smallest amount of money going to research for this illness, and if you have something wrong with you and you are running around like a crazy person, you have to be a danger to yourself or to somebody else. Is that the best health care? I do not think so.
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I would like to touch on some other concerns our family have for our daughter. She is fairly attractive and she wants to be loved and she wants to be taken care of by someone other than her family, like a man, a lover, a husband. Oh yes, she meets men, and she meets a lot of them. She is very vulnerable to men, and the word "vulnerable" in the act has to be clearly defined. We are worried about her wellbeing and her safety. She meets men of the worst type. They take her money, they move into her apartment and they start to control her. Now we not only have to worry about her mental wellbeing, but we have the AIDS concern. She never smoked before she became ill, and at one time she was smoking two and a half to three packs of cigarettes a day. What happens when these men come into her life and start controlling her? It is relapse after relapse, and we start all over again trying to get her hospitalized. Each time we see her deteriorate more, and each time we are told the same thing: "She is competent. She is not a danger to herself and she is not a danger to anybody else."
Two years ago, because she would not take her medication, I told her I would not take her on vacation because I was taking the grandchildren and it would be too hard on them. She seemed to understand that, but one wonders when they nod their heads. Would they nod their heads to almost anything you ask? I really do not think she comprehended what I was saying. Obviously not; she hitchhiked up there that night, in the middle of the night, and was picked up by the police, who had her hospitalized. When we found out about this I got in the car and drove around the area where she had been picked up. It was pitch black. There were very few cars on the road. I was relieved that she had not been raped, murdered, robbed or God knows what.
Last year it was the same thing, only this time she behaved a little differently. She is not a violent person. She heaved a brick through one of our windows. When on medication, my daughter is a very warm, loving, kind, generous person and a very supportive person. But when she is not on medication she is abusive, she is abused by men and she torments all of the family. She torments all of the family because she hears the voices. She was able to live in her own apartment for three years, but because the voices got out of hand when she went off her medication, she wanted to throw herself off the balcony. She would not return to her apartment.
So where does this really leave all of us? It leaves her rights intact, there is no doubt about that, but her needs certainly are not met. I often wonder: If her needs were met, would the rights be such an important issue?
Let's look at rights. We all have rights. I do not think you are probably too interested in my rights, but I have the right, because of the Mental Health Act, to watch my daughter deteriorate from somebody who was considered brilliant to somebody who now sits around doing very little, smoking, and being abused by men. I have the right to watch my husband cry every evening after she leaves our home. She has been ill for 14 years. I have the right to watch my friends and neighbours question why we cannot get help for her: "What is wrong with us?" It is not us. It is definitely not us. I have the right to come in conflict with our community, health professionals and politicians. I say to you, do I want to come in conflict with these people? Most certainly not.
I am not your enemy. Families of people who are ill are not your enemy. We are trying to be your ally. All we are asking is to be listened to.
I think advocacy is a great thing. I spend a lot of time working out there for schizophrenia. I think advocacy is very good for those who are going to be abused or neglected and who do not have people to assist them, such as strong family ties or friends. But really, who better to advocate for my daughter than her family? We know her best and only want to act in her best interests. We will do it for as long as we are on this earth and she is here. I would have some concerns about a bureaucracy being able to be sensitive to the needs of our people.
You know, Nancy B. fought for the right to die. My relatives and the relatives of the families I know want to get on with their lives. They want to find someone to share it with. But they have been murdered, and they will murder. They have been robbed, and they will rob. They have been abused emotionally, physically and sexually, and sad to say, they are looked upon as second-class citizens in this wonderful country of ours. They do not have to go to court for their rights like Nancy B. This system gave them the right to a slow death. There is only one difference: They have to keep those rights on to have it. I think that is wrong, and I think it is sad.
I would like to read to you what I see as the strengths and weaknesses in the acts.
The Advocacy Act: I think one of the strengths is to increase the voice of the consumer and to formalize advocacy service for those who, because of their illness, may be targets of abuse or neglect. I see weaknesses as to what is meant by "vulnerable." There has to be a clearer definition. There is no focus on the needs; just rights. Not everyone who has survived mental illness can speak for others and their needs. This seems to be assumed. Where is the representation of family care givers and professionals in choosing members of the Advocacy Commission?
You have a wealth of knowledge. When we first came into this system I can remember a nurse saying to me, "I want to introduce you to a group known as the Ontario Friends of Schizophrenics, who will help you understand the illness and help you with coping skills, because they know what is needed in this province of ours," and that is exactly true. Here you have a wealth of knowledge, and it is not being used in any way, and I think it is disgusting that members who are care givers and have this knowledge are not members of some kind of commission or board to these acts. Why is it that schizophrenia was not included in the exception given to groups representing neurological disorders such as Alzheimer's? It is my belief that people with chronic schizophrenia are unable to speak for themselves as well.
Bill 100: The strengths of the act: the recognition that one's capacity to make decisions may be partial and may fluctuate. The wishes of capable people, even if they become incapacitated, are supported. Weaknesses: What is meant by "competence"? It is not clear. What determines competence? It is not clear. The advocate's role in determining competence? Not clear.
Bill 109: Families unclear of their role and assuming advocates would take over where there is family: this has to be made clearer. There is a real misunderstanding of that among families, and it is distressing and causing them more stresses. A very complicated array of procedures protecting the rights of persons wishing to refuse treatment; no support that treatment restores competency and autonomy in some cases.
These bills lead to dissatisfaction, distress and demoralization for those with this illness.
Bills 108, 109 and 110: No clear definition of competence. The qualifications of the advocates? Not clear. Treatment delays will be increased, and there cannot be delays for treatment. It should be immediately. Committal laws still will be unchanged. There is a poor understanding of the nature of schizophrenia and other severe mental illnesses as to the biopsychosocial nature of illnesses.
There is no guarantee of speedy action. This is only going to increase the burden to the family and the care giver. There is a real need to look at connecting rights and care. We all have to recognize reform is needed, but not what has been proposed. I really feel these bills have to be reconsidered.
The Chair: Thank you, Mrs Peterson. On behalf of this committee I would like to thank you for taking the time out today and coming and giving us your presentation.
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ONTARIO NURSES' ASSOCIATION
The Chair: I would like to call forward our next presenters, from the Ontario Nurses' Association. Good afternoon. Just a reminder that you have a half-hour for your presentation. The committee would appreciate it if you would keep your remarks to about 15 minutes to allow time for questions and comments. As soon as you are comfortable, could you please identify yourself for the record and then proceed?
Ms Christianson: Good afternoon. My name is Mary Jane Christianson and I am the president of the Ontario Nurses' Association, the trade union which represents 55,000 staff nurses in this province. With me today are Glenna Cole Slattery, chief executive officer; Noelle Andrews, associate director, government relations; Lesley Bell, assistant director of government relations, and Carol Helmstadter, research officer, all of whom are registered nurses.
As the voice of the staff nurses working in hospitals, community health, industry, nursing homes and homes for the aged, we bring a unique perspective to the issues addressed in these proposed pieces of legislation. Staff nurses are the primary support for the security and wellbeing of people with mental and physical disabilities, illnesses and infirmities. No one is more aware than we are of the need to treat these people with dignity and respect, and to allow them to make their own choices as much as possible.
The government is to be commended for the introduction of the legislation covering consent to treatment, substitute decisions, and advocacy. We agree with the principles contained in the government's initiatives. One cannot argue with the overriding principles of protecting the physically or mentally impaired, nor can one argue with the principles governing informed consent to treatment and no treatment without consent. We also recognize the need for advocates and substitute decision-makers in the delivery of health care.
Having said that, we have major concerns, both as consumers and as health care providers, with the way in which these principles are being applied. The fundamental areas to be addressed by these bills are mental competency and the role of the advocate. They are not clearly defined by the proposed bills. Rather, the government intends to address the very heart of its initiative through regulation. This union does not believe the regulatory process is the appropriate forum to be addressing the essential elements of the proposed acts.
Looking at mental competency first, the existing bill, the Consent to Treatment Act, Bill 109, directs the health practitioner to apply prescribed criteria and follow prescribed standards and procedures to determine the capacity of the individual with respect to treatment. The prescribed criteria, procedures and standards, however, are not contained in these bills and therefore are not open to the necessary consultation of determining such important directives.
Second, looking at the role of the advocate, staff nurses have traditionally been advocates in conjunction with family, clergy etc. This government seems to see these traditional advocates as adversaries and therefore proposes another administrative commission, the Advocacy Commission. The commission will determine (a) minimum qualifications and educational standards for advocates, (b) the mechanisms for providing advocacy services, and (c) guidelines for determining mental capacity.
These are the very questions that we believe the bill was designed to address. In their absence, the proposed bill is meaningless and the government is delegating its elected responsibility to an appointed body.
A third concern is the cost of establishing this advocacy system. Health care is not confined to the institution, nor is it confined to the hours of 9 am to 5 pm. Health care is delivered in all settings, 24 hours per day, 7 days per week. Has this government given any consideration to the number of advocates which would be required just to cover the number of institutions in the province, not to mention the sheer geography of this province?
Moving away from the underlying principles of the proposed bills, we will address the omissions to the proposals. "Treatment" is currently defined as "anything that is done for a therapeutic, preventive, palliative, diagnostic, cosmetic or other health-related purpose and includes a course of treatment." This definition is far too broad and all-encompassing. We recommend that the current definition be specific to major treatments and it be the responsibility of the individual who prescribes a treatment to obtain the necessary consents, not the practitioner delivering the hands-on care.
The Advocacy Act must explicitly include protection for health care workers who work with vulnerable people from proceedings for damages, just as it already protects persons working for the Advocacy Commission or in community programs.
In the interests of the people whom we serve, the creation of a positive environment secure from frivolous and vexatious complaints must be present to enable the staff nurse to deliver the necessities of care. Staff nurses are constantly faced with the double-jeopardy situation. We are professionally accountable to our regulatory body, the College of Nurses of Ontario, and as employees to our employer. This is quite different from the situation of other regulated health professionals such as physicians, who are regulated private entrepreneurs. In our brief we have outlined suggested wording: "No proceedings for damages shall be instituted against a health practitioner for any act done in good faith in the execution or intended execution of the person's duty or for any alleged neglect or default in the execution in good faith of the person's duty," and it is on page 4.
In addition, there should be a clause requiring each agency providing service to establish clear policies for dealing with such complaints. We are extremely anxious that the basic aim of the advocates should be to understand and to seek to improve the quality of life and the care of vulnerable individuals. Complaints should not be directed against individual care providers but rather aimed at the activities of the facility as a whole.
We believe that it is in the interests of both the vulnerable people being served and the health professional providing care to work towards continuous improvement of the facility's structure and practice so that everyone, the health care team and the clients, can benefit. We strongly recommend that appointments to both the advisory committee and the Advocacy Commission include a registered staff nurse. It is the staff nurse, after all, who delivers by far the greatest amount of hands-on care to these individuals. She is, therefore, the most suitable health professional to provide firsthand information and education.
In addition, we recommend the establishment of a legislated bipartite advocacy committee modeled on the occupational health and safety committee. The mandate of this committee would be to resolve problems in the best interests of the clients rather than to lay blame and to impose discipline on individual practitioners.
In closing, this government must ensure that the proposed initiatives will not lead to unnecessary delays or confusion in delivering essential health care to the citizens of Ontario. We thank you for your attention and would be pleased to clarify any points or respond to questions.
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Ms Cole Slattery: I would like to put a codicil to the president's remarks. I am trying to think of a word that is stronger than "adamant" and I cannot, but our point we make that we could not make forcibly enough is the point that relates to the enabling legislation, which must carry the legislative intent, and that the regulatory procedure be used only for the regulation of what the elected officials of government believe to be the proper enabling legislation.
We have had now since 1989 absolutely one of the most dreadful experiences of any group I know of in North America with the regulatory process, that being the paucity of the fulfilment of the Minister of Health's intent when she regulated the Public Hospitals Act and allowed registered nurses who worked at the staff nurse level access to hospital committees on decision-making, planning, operational and fiscal oversight. We are conspicuous in our absence within the hospitals of Ontario, who have blatantly refused to follow what I consider to be an attachment to the law of the land, that being a duly authorized and executed regulation to a standing act.
We anticipate that if the government does not take a very firm hand and legislate what it believes must be done for the citizens of this province who will access this piece of enabling legislation, it will lose its right, and I personally suggest that it will have abrogated its responsibilities in turning this over to the bureaucrats who structure the regulatory process.
We are absolutely and totally disillusioned with our experience, which was meant to be a positive one, under the old Public Hospitals Act. We cannot underscore enough our concern for the consumer, the potential patient and the staff nurse who will deal with that. But more than that -- if there could be something more than that -- it is the right of a seated government and the responsibility of a seated government to legislate and not leave it in the hands of those who draft regulations.
Noelle, having had a bit of involvement with this, has a comment as well.
Ms Andrews: The other area we want to underscore and bring to the forefront, in case it gets lost, is the whole area of consent to treatment. As a profession, under the Regulated Health Professions Act and its revisions we were stopped from prescribing treatment. We have major difficulties if as a profession we are now in fact going to be obliged under this piece of legislation to carry out the actual consent to treatment, explaining the treatments, and all of the functions that go with that. We have major difficulties the way it sits now. It will fall on the registered nurse to obtain the consents, even though we were disallowed under a very recent piece of legislation from prescribing treatment.
Taking that one step further, in terms of liability as it relates to the staff nurse, we simply would have no option other than to advise our members not to (a) obtain those consents, or (b) carry out any treatment in the absence of a consent.
The "treatment" definition is very broad. It could be as simple as getting foot care completed, and in fact you would end up having to have a consent drawn up for that procedure. We just cannot emphasize enough the importance of the definition of treatment and who it is that will be obliged to obtain those consents.
Ms Cole Slattery: Our feeling is that if the consent to be obtained was not for foot care, for instance, but was indeed for electroshock therapy, then that is between the patient and the patient's husband, wife or family, because there are residuals to that treatment. There have been known cases where it was not the treatment of choice but the treatment of the prescriber. Those are two entirely different things, from time to time.
What we are telling you is, the way it is structured now, you put 55,000 staff nurses in this province who might work in mental health or in psychiatry under these bills in incredible jeopardy. We as a union would encourage them not to work there. We are not indentured servants; we do still have that small choice.
The Chair: Thank you. Each caucus will have about five minutes for questions and comments.
Mrs Sullivan: I think one of the things you will be interested in knowing is that this morning a coalition of groups and agencies, from the hospital association to the medical association, various advocacy groups and organizations which are made up of people who deal with and work with people with specific illnesses, including the Friends of Schizophrenics, appeared before the committee and suggested that these bills be withdrawn and that these hearings be used as a consultative phase, given the lack of consultation leading up to the introductions of these bills, and that a redraft of the bills be done to make them more accessible and amenable, not only to the health care providers but to the consumers as well. That has been my point of view for a long time. I wonder if you would like to comment on that kind of proposal.
We are naturally concerned about the vague notion of advocacy you have alluded to, that the definition of advocacy would be left to regulation process, that the collectivity of the bills would in fact provide an obstruction to the care of patients rather than enlarge the patients' rights or indeed provide them with rational and appropriate health care at the time.
You have mentioned the paramountcy of obtaining consent, and you may want to talk about that. I am not sure how much time of my five minutes you are going to have left, but I would be very interested in hearing your views on what you think about a redraft of these bills. It seems to me that is the way to go.
Ms Cole Slattery: We would be 100% in favour of that. There is a brief period of time here with which to share our views with you. Others have every right to come before you and speak about what they consider to be critical to the issue at hand. We believe that this is a legitimate government business, that this is a legitimate piece of enabling legislation. It certainly needs review. It needs to be hammered out, and it needs more than could be done to modify it or improve it in its present form. We would wholeheartedly support and urge the seated government to give thought to a proposal of withdrawing these bills, but not withdrawing the philosophy or the intent to legislate in this area.
Mrs Sullivan: Thank you. Would you like to continue on the paramountcy of consent? I think that is a matter of some importance relating to the definition of treatment and course of treatment, but indeed how a working staff nurse would see the consent legislation as it is now drafted affecting the way she would deliver service on the floor.
Ms Cole Slattery: There is a word that needs to be put in before the word "consent" when you talk about consent in any fashion, and that word is "informed." I believe there is an obligation that it is an informed consent, and if a patient is almost mentally obliterated by the agony or the terror of what is going on in his life at this time -- for instance, in traumatic automobile accidents, people are being asked to consent to things for which all they would say if you said, "I'm the physician and I want to cut your leg off," would be, "Okay." The patient is not usually going to say: "What? How come you want to cut my leg off?" The permission to perform a service or a function on another human body, if the physician says, "I'm going to have to cut your leg off; your arteries are mangled and you will bleed to death," is different. As a staff nurse, I resented physicians who had people on the operating room schedule for the next morning and when I went in to explain the procedure to them, I found out there was no consent and I would call the physician and say, "Tell them what a gall bladder operation is."
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Mrs Sullivan: I think you are going in a different direction from the question I was asking.
Ms Cole Slattery: No, I am going to say that whoever gets the consent, two things should be present. The person who is going to be the recipient of the treatment must be informed of the treatment, why it needs to be done, what the downside is of doing it and what the downside is of not doing it. That must be done by the person who is legally authorized under other pieces of enabling legislation to perform that procedure. If I said to you, "In my estimation, you should have your gall bladder removed, and these are the ups and downs of it," I would be diagnosing you, which is against the law, and I would be severely censured, if not have my certificate of competency removed. Yet the physician has a conversation with you, which I am not privy to, I do not know if your consent is informed or not, and you ask me for the upside and downside of this; and if I am the person you see or my colleagues, we can be censured as well for giving you any description whatsoever of what is going to happen you tomorrow morning if you sign this piece of paper. These are not exotic, ephemeral hypotheses; these things happen all the time. Any enabling legislation that deals with consent must have "informed" in front of it, and the consent must be obtained by the person who is going to do the procedure.
Mrs Sullivan: I have spoken --
The Chair: Mr Wilson.
Mr J. Wilson: She can have 30 seconds of my time.
The Chair: Okay.
Mrs Sullivan: If I can take the 30 seconds; I think it is important. I have had a conversation with Ms Andrews and --
Mr Malkowski: On a point of order, Mr Chair: I think we have to remember the time and give the other caucuses an opportunity to ask questions as well.
The Chair: Yes, Mr Malkowski. Mr Wilson has just offered up some of his time to Mrs Sullivan.
Mr Malkowski: Okay, thank you.
Mr Poirier: There go the 30 seconds.
Mr J. Wilson: I just wanted to show that we are cooperative from time to time in the opposition and that Mrs Sullivan and I do have a good relationship when it comes to being Health critics.
On that note, thank you for your presentation. I am glad to see -- take this as a compliment, please -- that you have changed your presentation slightly from the brief we received last year. I think it is much improved. I meant to organize a meeting with you on this; I am sorry I did not, but Mrs Sullivan did, and it seems to have worked out quite well. Because I was taken aback by the support of the ONA, which seemed to be fairly good support for the legislation, because, first -- the thing Mrs Sullivan was going to get into -- exactly who should be getting the consent here? It needs to be answered. Second, my view of the legislation, when it comes to nurses -- and I hope I showed, during the RHPA committee hearings, that my respect for nurses and ONA and other nursing associations is quite high
Ms Cole Slattery: You did indeed.
Mr J. Wilson: Thank you. I think you are being shoved aside in this legislation. You are being asked to get the consent, and then an advocate comes in, and it is a pretty complicated procedure you go through. If you want to just comment on that, and then I have one final, short question.
Ms Andrews: If I can respond first of all with, I guess, an editorial comment, certainly our verbal submission is somewhat different than our written submission, which we put in, I think, last August, and that is easy to explain. RHPA was in the full throes of hearings, discussions, all of the other things that went along with it. Our focus was on RHPA and in fact it continues to be on RHPA. So what you are seeing here certainly is some modification, although it does not go away from what our written submission was last year. We have simply had more time to focus on it of late. The second part of your question I will turn over to Lesley.
Ms Bell: I think as nurses we have always been advocates for the patient. One of the problems we see with this legislation is in obtaining a consent when there may be a question of our differing with the treatment order. We are the ones that have to obtain the consent in many of the instances, and we may in fact have a difference of opinion. We are asked now, by patients, what our feelings are, what some of the ramifications are. We assume, in a lot of cases, that the physician has given all the pros and cons, but in talking with the patient we find out that that is not true. We feel strongly that the consent should be obtained by the person who is prescribing the treatment, as opposed to the nurse who is there to carry out the course of treatment.
Mr J. Wilson: Thank you; that is quite clear.
You talk about a bipartite committee, and that is a good idea. If this legislation does go through, have you given any thought, as I believe we will eventually have hundreds of advocates running around the province, to a self-regulating college for advocates and that sort of structure? Maybe it is the wrong group to ask.
Ms Cole Slattery: You have that right. I believe in that like the boss believes in no proliferation of unions.
Mr J. Wilson: But setting aside the problems, it does work in some professions.
Ms Cole Slattery: It does not work for nurses, and we already have the midwives coming down the pike and God knows who else, God love them.
Mr J. Wilson: But my concern is that if we set up a bipartite committee or something, we are setting up more bureaucracy and more cost. We need more nurses, not more added to bureaucracy costs.
Ms Cole Slattery: Absolutely. I will sign that one too.
Mr J. Wilson: So I am looking for some sort of self-financing or self-regulatory model.
Ms Cole Slattery: There you go now. You are a smart man. You got elected. You can find money.
Mr J. Wilson: I think nurses are finding out that is not true.
Ms Cole Slattery: Our experience with Bill 208, the occupational health and safety laws that have seen the light of day in the last few years -- ain't nothing in this world that is perfect except some of the things ONA does, but over and above that, the occupational health and safety mechanism seems to be a way in which workers have an honest, open avenue to voice their concerns and the boss has the same to explain why or when. Our experience living with that enabling legislation -- I did not think 208 went quite as far as it could go, but to give Greg Sorbara credit, it went as far as he could get it -- is that it seems to be working out the way that mechanism was provided for. We would suggest that you do not need to reinvent the wheel; you just need to look and see how that came about.
Ms Andrews: The other part, as it relates to a specific regulatory college or some type of forum -- that might be good if you were dealing specifically with all paid advocates. But as I understand the system that is being proposed, we are not only dealing with what I would classify as professional advocates, but also with non-professionals who are not receiving any remuneration for the functions they are performing. I do not know how you would go about regulating somebody who is doing it on a voluntary basis in any event.
Mr J. Wilson: That is a good point.
Ms Akande: Thank you very much for your presentation. I recognize your expertise and certainly also your vulnerability in this situation. Is what you are really asking for greater specificity in the way the consent is obtained, who obtains it and how it is obtained?
Ms Cole Slattery: Yes. As well, it should be in the enabling legislation. These things should not be part of the regulatory process, which can change by whim or by will depending on the party in power. I think it does not make any difference what party is in power; everybody is looking for good laws in this particular area since we are all potential consumers. Probably the people at ONA would qualify more under some of the areas than others, but the fact of the matter is that there should be a greater degree of specificity of what is to be done, how it is to be done and by whom, within the legislation.
Ms Akande: Within the legislation.
Ms Cole Slattery: Yes, ma'am.
Ms Akande: If I can refer to page 4 of your submission, there is an assumption that the public is able to recognize incompetent or unsafe care etc. You are questioning that, and yet we do have vulnerable people and people who are not exactly receiving appropriate care. I am not saying because of your intervention, but it does happen.
Ms Cole Slattery: A lot of times, even over and above this particular piece of legislation, you go into a hospital to have a procedure done and when you leave you think: "That wasn't as bad as I thought it would have been. I am heartened by my experience and glad that I live in Ontario." You would be making a positive comment on your experience and there could have been a number of very competent things done to you without your even being aware that they were done by competent people.
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Ms Akande: I recognize that. Are you asking that we trust --
Ms Cole Slattery: No, no. The other corollary is that you have a very unhappy experience, and we are not going to tell you, "It was because your physician was incompetent," or, "One of our colleagues was incompetent, that was part of your problem." We will just agree with you that you had an unhappy experience and hope it never happens again.
The recipient of the care does not always know that it is competent or incompetent delivery by the physician, nurse, or whoever. I do not know how you could specify that. Help me out with this, Noelle.
Ms Akande: If we are going to move from competent to incompetent, could we move to desired or not desired care? Would you agree that patients would be able to understand, or may be able to understand, whether the particular care prescribed for them is something they want to be a part of as a patient, or something they do not wish to have done to them or with them?
Ms Bell: If I can just answer, in some regard you have already indicated a problem, because as long as the patient is agreeing with the treatment there is very seldom a problem.
Ms Akande: That is right.
Ms Bell: It is when there is a question and they wish to refuse. I spent some time sitting on the Weisstub Inquiry into Mental Competency committee and after a long-drawn-out debate we came up with the fact that we could not determine criteria for competency. The question of competency is going to be raised in these areas and I think we have a real problem when we do not have criteria established to determine competency.
As a practising nurse, I can remember in a community hospital going by ambulance with a patient to the Ottawa Civic Hospital and having a physician come down, a resident in psychiatry, speaking to a patient for two minutes, determining the woman was competent and that she could sign whatever consent she wanted. I had to wait for an ambulance to come back to pick us up, and in the meantime she stripped and ran naked down Carling Avenue.
I think there is a question of fluctuating capacity, of competence, and you do not have anything in here, and I cannot see it coming out in regulation too quickly, on how to determine that. Without that, when do you get to the question of when a person wants to refuse to consent to treatment? I just think there are so many problems inherent in all of this at this time, and leaving it to regulation, as was said before, is not going to be the answer.
Ms Akande: I have one other question to ask, if I may, and that is about deferred consent. There have been those who have come before this committee on this and other days and asked for the right to assign someone to be responsible for making decisions around their --
Ms Cole Slattery: Not my ex-husband for me.
Ms Bell: The problem is, that is fine if you have --
Ms Akande: But you have choice.
Ms Cole Slattery: Not if I am laying there totally unconscious. You have to look in my wallet. Noelle is authorized to make --
Ms Bell: Or if that person is the one who routinely visits the patient. As care givers, you cannot expect us to stop everything and find out if in fact this is the person who has the preferential treatment to give consent on my behalf.
Ms Akande: But if that person is already assigned when the person was --
Ms Bell: Legally, is that going to continue to go for all aspects of care or treatment and everything? You get into the legal aspects of questioning whether this substitute decision-maker or substitute is in fact authorized to give consent to everything or not.
Ms Cole Slattery: Ask yourselves the question: Who in this room would you pick if you were not able to give consent? Who would you entrust both feet and your left ear and head to? Will you be safe? Yes, absolutely.
Ms Akande: There is another question: Would you better trust someone you have selected when you were well, or would you allow yourself to be up to the decisions of the unknown medical practitioner?
Ms Andrews: I think we are dealing with a couple of things here; first, the assumption that health care is delivered in some kind of controlled package. In fact, what we have is a mobile society. We have a breakdown of the family unit as we know it, and those are the people who, for the most part, would have taken care of these things for us.
Fine and good: I have a living will. I have determined I do not want treatment because of whatever diagnosis and now I travel to Windsor and I am in a car accident. First of all, no one there knows I have a living will. The police cannot find my wallet or my purse. So now you have this whole cadre of care givers in the emergency department who cannot do anything else other than treat, and it totally removes all the good planning processes that I, as an individual and as a citizen, thought I could have in place to take care of myself.
I think what we are dealing with here is the notion that health care is fixed, and we do not have the breakdown of the family unit and we do not have an aging population who have none of their children maybe living close by and may not have any living relatives, for that matter. In terms of the consultation and expanding on the notions that are in these bills a lot of other things need to be considered.
Ms Cole Slattery: Take the converse: She has the living will, she is in Windsor, she is in an accident, she is not able to respond, she is unconscious, whatever. Do you want the nurses and doctors to stand there and wait until someone can be notified they can give consent to treatment? Do you want to be the person lying there waiting for treatment until someone can give the consent?
It is not that easy to call some of these shots, because in health care you only access it, for the most part, if not reluctantly, certainly by surprise. So you are more apt to be there thinking you were going to be having supper with Mabel, and guess what? You do not anticipate the delivery of about 70% of the care.
The Chair: Thank you, Ms Akande. Ms Helmstadter, Ms Cole Slattery, Ms Christianson, Ms Andrews and Ms Bell, on behalf of this committee I would like to thank you for taking the time out and giving us your presentation today.
A reminder that the subcommittee will be meeting briefly as soon as we adjourn. This meeting stands adjourned until 9:30 tomorrow morning.
The committee adjourned at 1707.