CANADIAN BAR ASSOCIATION -- ONTARIO
ADVOCACY CENTRE FOR THE ELDERLY
COLLEGE OF PHYSICIANS AND SURGEONS OF ONTARIO
ALZHEIMER SOCIETY FOR METROPOLITAN TORONTO
ONTARIO PSYCHIATRIC SURVIVORS' ALLIANCE
CONTENTS
Monday 10 February 1992
Subcommittee report
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
Peter Singer
Canadian Bar Association_Ontario
Strachan Heighington, treasurer
Dona Campbell, member, trust and estate section
Ralph Scane, member
Advocacy Centre for the Elderly
Judith Wahl, executive director
College of Physicians and Surgeons of Ontario
George Morrison, president of the college council
Rachel Edney, vice-president of the college council
Bala Nambiar, senior public member
Michael Dixon, registrar of the council
Alzheimer Society for Metropolitan Toronto
Andrew Ignatieff, board member
Ontario Psychiatric Survivors' Alliance
Terry Milne, research manager
Irit Shimrat, coordinator
Randy Pritchard, assistant coordinator
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):
Curling, Alvin (Scarborough North/-Nord L) for Mr Sorbara
Also taking part / Autres participants et participantes:
Bentivegna, Guiseppa, Ministry of Health
Fram, Stephen, Ministry of the Attorney General
Sharpe, Gilbert, Ministry of Health
Spinks, Trudy, Ministry of Citizenship
Clerk / Greffier: Freedman, Lisa
Staff / Personnel: Swift, Susan, Research Officer, Legislative Research Service
The committee met at 1014 in committee room 1.
SUBCOMMITTEE REPORT
The Chair: We have a report by the subcommittee.
"The subcommittee met Monday 16 December 1991 pursuant to standing order 123 to consider a report to the committee on the following matter designated by Mr Harnick:
"Recognizing that Ontario is faced with rising crime rates, especially violent crime, the citizens of Ontario need decisive action from the government of Ontario in order to address this growing crisis. Therefore, as a first step, the Ontario Legislature should, through the administration of justice committee, call witnesses forward to present their views on the impact of the spiralling crime rates on society and determine how this crisis can be appropriately addressed by the government and make recommendations based upon the evidence presented to the committee.
"This issue is to be considered for a period of 12 hours.
"The list of witnesses will be determined by the subcommittee.
"The subcommittee met on Monday 16 December 1991 pursuant to standing order 123 to consider a report to the committee on the following matter designated by Mr Sorbara:
"The decision by the Treasurer, Deputy Treasurer, Minister of the Environment, the Deputy Minister of the Environment and the executive council of Ontario to ask the Ontario Provincial Police to investigate matters of Ontario's public service and members of provincial Parliament regarding the release of government information to those same members of provincial Parliament.
"The following list of witnesses is to be invited by the clerk of the committee to appear before public hearings:
"Honourable Ruth Grier, Minister of the Environment;
"Gary Posen, Deputy Minister of the Environment;
"Honourable Floyd Laughren, Treasurer of Ontario;
"Bryan Davies, Deputy Treasurer of Ontario;
"Honourable Allan Pilkey, Solicitor General;
"Donald Obonsawin, Deputy Solicitor General;
"Thomas O'Grady, Commissioner of the OPP;
"Jim Szarka, Deputy Commissioner, Services;
"Staff Sergeant L. H. Acres, OPP resources development."
This will be deemed as adopted.
"Your subcommittee also recommended that the 1990 standing order 123 designations by the Liberal and New Democratic Parties be withdrawn."
We will need unanimous consent for this.
For these meetings, we will be following the pink schedule now. I think everybody has one at his or her desk. Just so everybody knows, we will be following the pink schedule and will be receiving an update next week.
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: We will now go to the beginning of the public hearings on Bill 7, the Powers of Attorney Amendment Act, 1990; Bill 8, the Natural Death Act, 1990; Bill 74, the Advocacy Act, 1991; Bill 108, the Substitute Decisions Act, 1991; Bill 109, Consent to Treatment Act, 1991, and Bill 110, the Consent and Capacity Statute Law Amendment Act, 1991.
The first thing we have to deal with is that when we are going through these bills right now we will be using the old bills. We will not be using the reprinted ones until we get to the clause-by-clause, and then we will use the reprinted ones.
Today we have Gary Malkowski, the parliamentary assistant to the Minister of Citizenship. Please proceed.
Mr Malkowski: I am certainly pleased to have the opportunity to speak with you this morning. With me today are Gilbert Sharpe, legal director for the Ministry of Health; Stephen Fram, legal counsel from the Ministry of the Attorney General, and Trudy Spinks, legal counsel from the Ministry of Citizenship. Following my statement, Mr Sharpe, Mr Fram and Ms Spinks will be providing you with a detailed briefing outlining each of the areas where the bills interconnect. They will also be available to answer any questions you might have.
The Minister of Citizenship, the Minister of Health and the Attorney General have described in their statements to this committee the purpose and scope of each of the bills before us. Today, as lead parliamentary assistant to this legislative package, I will try to identify the consistent principles that run through the bills. We will highlight the important connections and illustrate how these bills operate as checks and balances to one another, but before I do this I would just like to reiterate and emphasize the significance of this legislative package.
The Minister of Citizenship, Elaine Ziemba, stated before, "Our government will be judged by how we treat the most vulnerable members in our society." This government is delivering on this commitment to ensure that the autonomy, rights and dignity of all citizens, and particularly those of us who are most vulnerable, are enhanced and respected.
Vulnerable people, those of us who experience difficulty expressing our wishes or knowing our rights because of a disability or infirmity, are especially vulnerable to abuse, neglect and exploitation.
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The Advocacy Act, as the cornerstone of this legislative package, provides the key principles that underline and underpin these linkages.
I will now lay out the principles and go into presenting the connections under each principle: (1) the promotion of respect for the rights, autonomy and dignity of all persons; (2) the assurance of due process where the freedom to control one's own life and body is at risk; (3) the recognition of the importance of the family ties, and (4) the protection of the most vulnerable from abuse, neglect and exploitation.
The paramount principle underlying these bills is that of the autonomy. This principle represents the foundation of the Advocacy Act, which is the centrepiece of this initiative. Through a commission appointed by and comprised of vulnerable adults, the Advocacy Act will promote respect for the rights, autonomy and dignity of vulnerable people. A key purpose of this act is to empower vulnerable persons in our society by enhancing their ability to make their own choices and obtain the support needed to remain in control of their own lives. Vulnerable people are frequently frustrated and disempowered by the failure of social, legal and institutional systems to hear their concerns and respect their choices. They are especially vulnerable to abuse, neglect and exploitation. Advocates who are independent, free from conflict of interest and who have the necessary experience and training will assist vulnerable people in the exercise of their autonomy.
The support that advocacy provides represents an important check against inappropriate or unnecessary guardianship. The procedures and principles governing the appointment and conduct of guardians is covered by the companion legislation, the Substitute Decisions Act.
This theme of autonomy is further reflected in the Substitute Decisions Act, which introduces the concept of the power of attorney for personal care. Through this device, all of us will now be able to decide, while we are still capable, who will make the most critical decisions for us if we become incapacitated.
Sometimes these decisions will involve medical treatment. The Consent to Treatment Act respects the wishes of individuals by ensuring that the person with power of attorney for personal care takes precedence over the claims of anyone else to make medical decisions when we are unable to do so ourselves.
The Substitute Decisions Act also breaks new ground by allowing us to make advance directives about our medical treatment. The consent legislation ensures that these advance directives are respected.
The second principle which is enshrined in the Charter of Rights and Freedoms and embodied in all three acts is that of due process. The freedom to control one's own life and body is precious and should not be removed except through a process that is scrupulously fair and that can be tested. Both the Substitute Decisions Act and the Consent to Treatment Act ensure that the assessments of capacity will now only be made with reference to appropriate definitions and in accordance with prescribed criteria. Every person who is assessed as incapable under either of these acts will have a right of review. Advocates who are responsible to an independent Advocacy Commission and therefore free of conflict of interest will provide the information necessary to make that right meaningful.
It is specifically in this area of rights advice that the Advocacy Act interconnects with the other two acts. Both the Substitute Decisions Act and the Consent to Treatment Act say very clearly what the advocate can do when he or she meets with a person who is alleged to be incapable. The function is limited to explaining what the finding of incapacity means and advising of the right to challenge it. If the individual wishes to contest the finding, the advocate will help him or her make the application for review and/or obtain legal services.
I want to emphasize that this role does not extend to giving medical advice or advising a person whether he or she should contest the finding. It is a very straightforward, uncomplicated function. I might add that psychiatric patients have had the benefit of rights advisers for quite some years and the process works very effectively.
A third theme running through the acts is the recognition of the importance of family ties. Close relatives and partners are given priority in respect of guardianship appointments and will also usually be the substitute decision-makers under the Consent to Treatment Act. The Advocacy Act recognizes the valuable role that supportive families provide by including as one of its purposes the encouragement and enhancement of family support for vulnerable persons.
Yet another common principle is that each of the acts, in its own way, provides a safety net for those of us who do not have family or friends to care for us.
Advocates will be able to provide support and assistance to vulnerable adults who have no one else to help them. The Substitute Decisions Act and the consent legislation both provide that the public guardian and trustee will assume responsibility for people who are mentally incapable where there is no one else able and willing to act as guardian or substitute decision-maker.
Finally, the acts all play a significant and complementary role in enhancing the protection of the most vulnerable among us who are at serious risk of abuse, neglect or exploitation.
The Advocacy Act provides that advocates will have powers of entry and access to records to ensure that they can intervene effectively on behalf of vulnerable adults who are at risk. In addition, the act ensures that an independent body exists to identify and seek the correction of systemic problems relating to policies, procedures and laws which lead to abuse and neglect of vulnerable adults. The Advocacy Commission will act as a check against the power of public institutions and authorities, including the office of the public guardian.
In turn, the public guardian will be the watchdog for financial exploitation, physical abuse and neglect of mentally incapable people. It will be required to investigate allegations of serious harm. It will be able to force guardians and attorneys to account.
The public guardian will also protect the integrity of advocates who cannot act as substitute decision-makers by acting as the guardian of last resort where decisions must be made and the individual is not capable of making a decision even with the support of the advocate.
Ladies and gentlemen, members of the committee, I hope I have been of assistance in summarizing for you the distinct but interdependent roles these bills will play in the lives of those of us who are vulnerable or incapable.
You have heard the question raised here: Why do we need three separate acts? There are very compelling and cogent answers to this question. Most important, in order for advocates, guardians and service providers to act as effective checks and balances for one another as described earlier, they must be accountable to separate programs and responsible to separate ministries. Advocates in particular must be independent and entirely free from any conflict if they are to be truly effective in advancing the interests of vulnerable people, on an individual as well as on a systemic basis.
I recognize that the subject matter these bills deal with is complex. The issues they address are sensitive and profound. Respect for autonomy, rights and dignity are the fundamental principles underlying the Advocacy Act, which I am pleased to represent on my minister's behalf. All three bills are interrelated based on these principles.
The Chair: Thank you, Mr Malkowski. Would you like to do the questioning now or wait until we have the briefing? We will do all the briefings.
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Mr Sterling: Thank you very much, Mr Malkowski. I appreciate your comments. I would like to raise a preliminary point.
Before we begin these hearings, I have had, as I am sure many members of this committee have had, approaches by various interested groups. I am disturbed to find that most of these groups have the impression that there are amendments which have already been determined by the government which are going to alter this legislation. I would like the ministries to come clean and present those amendments now so that groups that are going to make presentations over the next coming weeks will do so in full knowledge of what the government's agenda is. I do not think there is any sense in us hearing groups complain about section 23, section 48 or whatever if in fact it has been determined by the government that these sections are faulty and that there should be some amendment to them.
The Chair: The clerk has advised me that she has contacted the various ministries and they have informed her that there are no amendments forthcoming yet.
Mr Malkowski: I would like to answer right at this point that no amendments are ready. We are certainly here to listen to the concerns of people, and we have a very open agenda in this matter. Certainly there may be a time when we will consider changes, but that is after we have listened to the witnesses in the next few weeks.
Mr Poirier: On a point of clarification: The wording I have heard my honourable friend the parliamentary assistant use is, "No amendments are ready." Does that mean there are some that are not ready coming or that there are no amendments planned? That makes a big difference.
Mr Curling: Sounds like they are working on something.
Mr Poirier: They could be working on something, or are they not working on something or what can we expect? With Easter coming, are we going to get some eggs or what?
The Chair: Mr Malkowski, for clarification.
Mr Malkowski: Again, what I am saying is that there are no amendments planned at this point. We are here with an open agenda to listen to people and find out where they feel there are needs for changes. There are no amendments in the planning stage at this point.
Mr Poirier: Fair enough. Thank you. A further question, if I may. If that is the case, fair enough. We heard that clearly. After consultation, after hearing the different groups come forward and after discussion in committee here, is the government open to amendments to what it will hear here in the next few weeks? I would like to hear that.
Mr Malkowski: After we have heard the presentations we will certainly be considering making any necessary amendments if that happens to be a need that we identify, but at this point we are not able to comment until we hear people speak.
The Chair: Thank you. I might remind you that it is not necessary to stand, if you so choose, Mr Malkowski.
Mr Malkowski: The problem is that the interpreter cannot see my hands because of the riser in front of me. I have to stand up so the interpreter can see me clearly and be able to see what I am saying.
Mr Morrow: Mr Chair, I was just going to say that in the normal public hearings we do we normally do amendments afterward if the presenters obviously make a just cause. We do have a lot of people presenting this morning, so can we move on?
Mr Sterling: I had hoped we would enter into these hearings on these bills because of their importance. I view them as probably some of the most important pieces of legislation the government has brought forward. I had hoped we would enter into these in a logical, non-partisan fashion. It is possible. We always have to be partisan in this business, but I just find the parliamentary assistant's remarks contrary to what other groups are telling me on the telephone and in interviews: that there is a lot of winking and nodding going on with regard to this legislation and that in fact there have been suggestions and amendments which are being put forward and I think would clear the decks and let us get to the issues which have not yet been resolved. I just say that it is regrettable that the government is taking this position at this time.
The Chair: Thank you, Mr Sterling. I might remind you that we do not work on speculation or hearsay. I am sure that if the ministries have something forthcoming they will present it in a timely fashion. Now we could proceed with the briefings from legal counsel. Could you please introduce yourself and then proceed.
Mr Sharpe: Gilbert Sharpe. On my right, Trudy Spinks. On my left, Steve Fram. I believe we have -- well, I have been before you before, in December. It is a pleasure to come back.
Mr Poirier: You are an institution.
Mr Sharpe: I do not know if that is good or bad.
Interjection.
Mr Sharpe: Thank you. I should say at the outset that we are all here to help in any way we can, and while I am going to try to lead you through some of the interconnections of the bills, of course I am not going to presume to know bills other than 109 as intimately as my colleagues, so I am sure we will all be participating.
On the question Mr Sterling raised about amendments, I know that the Minister of Health, when she appeared before this committee, did flag a number of areas of concern that had already been raised to our ministry and did indicate some sympathy to those concerns and a direction we could go in, depending on the fuller presentations that appear formally before this committee. So I know that there have been some issues as to areas in 109 that could be improved that have been flagged by the minister. I would anticipate that, based on the presentations we are all going to be monitoring carefully over the few weeks, we hopefully will develop amendments according to the need that arises at the time and as we go.
I am assuming that through the clerk everyone has a binder of material summarizing the interconnections and a five-page memo.
The Chair: For the clarification of the committee, it is this yellow binder.
Mr Sharpe: Yes, that is right.
Interjection.
Mr Sharpe: We turn it sideways. It is not quite as offensive.
I would like to give credit where it is due. Brenda Pearce, who is an articling student with our legal branch, prepared this material, and I know she is in the public gallery and deserves the credit for having put this together, with the assistance of one of our counsel, Giuseppa Bentivegna. Giuseppa put together the five-page summary of the interconnections. While we are going through this, Trudy put together the charts that appear in the material itself.
Perhaps I could start by summarizing a bit of what I said in December, the notion of why we have ended up with separate bills and where a lot of this came from.
I can remember back into the 1970s when, prior to the Powers of Attorney Act first appearing, the tradition of a power of attorney for lawyers would be that if we were going out of town for six months, we might leave control over our bank accounts, assets and business to a friend or business associate by executing a power of attorney, and of course if we subsequently became incompetent, that power of attorney would at common law be null and void. The Powers of Attorney Act was first developed in the late 1970s with the notion of permitting those powers so given to survive subsequent incapacity if the person executing them contemplated that in making out the power of attorney. I can recall into the late 1970s working with groups like the Alzheimer society that wanted the power of attorney to survive subsequent admission to a psychiatric facility, where usually, following an incapacity finding, the public trustee would take over, and amendments were made at the time to the Mental Health Act and the Powers of Attorney Act to do that. It is true that was all on the estate side, but the notion historically was that a person should be able to indicate in advance who would have control of his assets should he become incapable and that that control should survive any, normally, formal findings under vehicles like the Mental Health Act.
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There have of course been discussions for many years -- I am thinking now particularly of Mr Sterling's bills 7 and 8 -- of concepts of living wills or the advance directive notion on the personal side. Through the 1970s and early 1980s we received in the Ministry of Health many questions about: "Could I make out a similar document indicating what would happen to me? I may not want to go into a particular nursing home or not want a particular kind of treatment." The answer of course was that there was no legislative vehicle to do that. They could always express their wishes in writing, bring them to the attention of people close to them, health care providers and others, and hope that they would ultimately be relied on if indeed they subsequently became incapacitated.
During this time there is a development in the States of common-law cases -- Quinlan, Saikowitz and others -- trying before the courts to determine whether the person would have wanted to be retained on life support, calling evidence as to statements they might have made ahead of time and things of that sort. Of course, at that time in the States, natural death legislation was developing like our Powers of Attorney Act to recognize a legal process where people could reflect those desires.
The only other legislation we really had to look at the personal side of things was the Mental Incompetency Act. It, as you know, was rarely used on the personal side of things. It took a long time, it was expensive and it was an all-or-nothing approach. If you became incapacitated and you were found incapable to look after your person, you lost all rights over everything. Some of us may remember the Justin Clark decision and the issues surrounding that. The act was used usually if grandma had millions of dollars and was, in the view of her family -- potential people who might inherit -- frittering it away and wanted to grab control over it.
So in that climate various committees were developed. Steve, as you know, chaired one of them through the 1980s to look to coming to some way of bringing forward legislation that would codify and create rights in all of these areas. In doing so, there was a big issue for me in terms of the health form, because one of the issues as we were going always related to the question of why you would consider substitute decisions for health care different than substitute decisions generally. Why not have it all under the new streamlined guardianship legislation? We could have a very simple streamlined procedure that hopefully would not create too great a delay in health care settings like hospitals.
The only answer I can give on that would be the history of statutes like the Public Hospitals Act and the Mental Health Act that traditionally had recognized the ability of family, next of kin, to make decisions on behalf of their relatives who became incapacitated, either temporarily or permanently, and the need often to move swiftly in health care settings, particularly hospitals, to be able to get on with treatment on the presumption that we have the best interests of our loved ones in mind. It may not always be the decision that they might have made if competent; however, that is the way health laws had reflected the notion of substitute decision-making -- a speedy means of having family make choices for their loved ones.
Now, having said that, unfortunately we did not have substitute laws for health care in places like nursing homes, homes for the aged and for the developmentally handicapped. So although practically they relied on family consent, they were doing so without legal authority behind them. There are a number of reasons why in Bill 109 I think we wanted to have it encapsulated as a complete code to guide health-care professionals.
Particularly during the proceedings of Steve's committee, there were many concerns raised about how easy it might be to have a doctor say someone was not competent if that person was not agreeing with the treatment, and then take the family's consent and proceed to force something on him that he might not want, and how important it was that, if we were going to retain that model, particularly with regulated health professions now where many health care professionals are going to be in a position of making these decisions on capacity and removing a person's rights to make his own decisions, we set up some protective mechanisms, even where we were moving into procedures under Bill 108 that could ultimately end up in a court's review in the formal appointment of guardians.
It was considered important, again, to have some external mechanism to tell people who are in that potential jeopardy, in their view losing control over an aspect of their lives, that they had the ability to challenge that, and the challenge mechanisms would become more formalized should they desire to question the finding that they are not capable. This exists as well for Bill 108 in validating powers of attorney for personal care, even where the person may have chosen the assessors who down the road make the decision and submit the forms to the public guardian and trustee. This is where ultimately Father Sean O'Sullivan's report was very helpful. The notion was that we would have people from the new Advocacy Commission come in at important junctures in our various statutes to explain rights to people.
It is not really seen as a formal advocacy function in the sense that the person would then be spending a lot of time with the incompetent individual attempting to challenge decisions and assert rights on an ongoing basis. Rather, this would simply serve as an initial mechanism whereby someone attempts to communicate to the individual who is possibly incompetent to let them know that this decision is being made and that if they want, they can challenge it. The person will perhaps take the extra step of helping them find a lawyer should they want to bring that challenge forward. But it was never anticipated that this function would be one of pure advocacy as such. In my view, "rights adviser" is probably the better concept for that role. That is the backdrop of how we have gotten to where we are.
We could postulate a case of the so-called reasonable person trying to go through the system, someone who discovers he has Alzheimer's disease, for example, but who in the interim is lucid and competent. He knows with some certainty where the disease is going to take him and he would like to try to ensure that ultimately down the road his wishes will be respected when he truly becomes incapacitated. It may be that he will choose not to go to a particular kind of psychiatric facility or to have certain types of drugs used. It may ultimately be that if his illness results in some terminal condition he would want to choose that extraordinary means not be used to keep him going on life support systems.
In this legislation we are hoping there is a formalized mechanism, and a less formal mechanism as well, to accomplish that. Under Bill 108, individuals could execute a power of attorney for personal care and, with some specifics, designate an individual to act on their behalf and try to guide their decision-making in, for example, the health care arena by being very specific. They can also choose the people whom they want ultimately to conduct the assessments. The assessors will ultimately be developed by regulation into classes. There will be training programs and so on so that they they could not choose just anyone; they would have to be from among those classes. Down the road when, in the view of the assessors, they become incapacitated, there is a formal procedure for validating the power of attorney without having to take formal court proceedings.
Bill 109, the consent legislation, recognizes throughout the bill -- and there are a number of sections which I will give to you for your own reference. They are subsection 7(2), section 12 and subsections 22(8) and 26(6). Those sections provide mechanisms for holding in abeyance the normal procedure under Bill 109 for ensuring protection where it is thought that a person either is now incompetent and an advocate would visit -- which is the section 10 triggering mechanism -- or, in the other sections, where a health care professional would normally be entitled to conduct a new assessment and decide that the person has now become competent. That type of thing cannot happen if they either have a guardian under Bill 108 or if there is a validated power of attorney for personal care, because the protections in determining their incapacity have already been afforded in Bill 108 with the advocate's visit, discussions, appeal and review mechanisms and so on.
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What we have ultimately in Bill 109, as you know, is an hierarchical structure of substitute decision-making where, in the usual course, the health professional decides the person is not competent to consent to that specific kind of treatment being offered. In that situation, the advocate would normally, under section 10 of Bill 109, come in and talk to the person. There would be the usual rights advice where the professional would tell the person, "You've been found incompetent; you have the right to go to a board," and so on, but there is also notification to the advocate.
I think it is under section 7 of Bill 74 where the advocacy legislation requires that where another act requires advocacy services, they must be provided. So the advocate then would come in and explain to the patient that he or she has been determined to be incapacitated to consent to treatment by the health professional responsible for his care. It does not necessarily have to be a physician. The Regulated Health Professions Act -- and we are working on a new Public Hospitals Act -- may well contemplate midwives, psychologists and other health professionals having independent admitting rights, privileges, treatment rights and so on. Any of these individuals could make that finding. The person is told by the advocate, who is wearing his rights advice hat, that he could challenge that if he wants to.
In December I explained how under the Mental Health Act we had monitored the number of people told that they could challenge the finding of incompetency who actually do -- and it is not a high percentage -- but the individual might say, "Yes, I'm not pleased with that right being removed at this time." We can think particularly of a schizophrenic who has gone off his medication and who perhaps lacks insight and so on who now comes to that decision. If he wishes it, the advocate could then help him to have access to legal aid, to counsel, to challenge the determination initially before a review board and ultimately on appeal from there to court if he so desires.
As I say, none of that would be relevant if the person had already under Bill 108 had a guardian appointed or a validated power of attorney. To take the routine case, the individual had made out the power of attorney for personal care, had appointed someone. He has Alzheimer's, he is going downhill, he now needs hospitalization. The power of attorney for personal care -- the assessors are triggered. They apply to the public guardian and trustee for validation; the validation takes place; there is no challenge. He is now in hospital, signed in on the authority of his substitute decision-maker, whom he himself has chosen under the power of attorney. He is now in hospital. Treatment is proposed. That person would be the highest-ranking. There being no formal guardian appointed by court, the next level down would be the individual he has chosen, who would then make judgements about treatment for him, following his wishes if his wishes are applicable to the particular treatment choices being offered at the time.
Where it becomes a bit complex might be a situation where evidence is available that the patient changed his mind about the care he wanted. He did not get around to letting anyone know in a formal way to change his power of attorney for personal care. The question for the health care team now is, "To whom does one listen?"
If there is solid evidence that he did in fact change his mind, and one can always seek direction on this, but if there is evidence that clearly indicates there are more current wishes, they may be in the form of an advance directive completed under Bill 109. There is a provision that deals with the ability for us to designate a form that could be used on a voluntary basis. It would not necessarily preclude forms developed by groups such as Dying with Dignity, but an individual may have completed an advance directive. A Jehovah's Witness, for example, may have completed a form similar to the Malette and Shulman situation, or he may have told someone he relies on: "I made this thing out some years ago and I should get around to changing it, but I don't feel that way now. With this kind of treatment that's now facing me and is imminent, I really want something different done."
More current wishes under Bill 109 would override the earlier instructions set out in a power of attorney. Those wishes would now be the ones that govern, although the individual making the decision would remain the attorney under the validated power of attorney for personal care. He would be the substitute decision-maker. He would now be bound to follow the more current wishes the individual expressed. The thread running through Bill 109 is that just because we completed a formal document at some point in the past, that should not necessarily preclude our ability to change our mind later on.
Very briefly, that is the thread of a possible scenario of how someone could use all three acts in, I hope, a coherent manner.
I would be happy, if you like, to run through briefly the sections in the material you have, just to indicate what is here for the purpose of your review when the presentations come during the public hearing phase of the committee. What we are trying to do with this of course is, on an issue-by-issue basis, to bring all the material together on one page so you do not have to jump from bill to bill looking for different provisions.
The first section deals with the relationship between the consent act and the Substitute Decisions Act and, in an encapsulated form, explains some of the interactions I have just described.
The next section deals with the relationship between advocacy and substitute decisions.
In the next section we have set out the contents of each act, taken of course from the descriptions at the beginning of the acts, basically the index of the acts, so they are all in front of you at once. Then perhaps you can flip to part 2 if you just want to very generally find the specific provision someone has raised during the hearings. Hopefully this will be a bit of a road-map so you do not have to open all three acts and search through all the indices.
The next part deals with the purpose of the acts. You have heard a fair bit of discussion about that already.
The next, of course, is the application of the legislation. It is interesting to note that Bill 108 is aimed at persons 16 and older, whereas, as you know, Bill 109 permits persons under 16 to give autonomous consent, this rebuttable presumption notion. Where a young person indicates a desire to give a consent, then it does trigger the advocacy provisions under section 10 of our bill and section 7 of the Advocacy Act.
The next starts getting into issue-specific topics. Here we are looking at mental capacity. I think you will find the definitions fairly similar between the acts. We certainly attempted to gain consistency.
Flowing on from the definition, how one determines mental capacity is the next section. Continuing on in the determination of mental capacity, we look at personal care, and then at the bottom of that section, property.
The next section questions what the procedure is if the person is found to be mentally incapable. This is where Trudy's chart appears for the first time. She put together a description of how the Advocacy Act interrelates with the two.
Mr J. Wilson: This is the simplified version?
Mr Sharpe: Yes, she has the more complex version here if you would like to see it.
The next section deals again with the procedure, what happens if the person is found to be mentally incapable, and starts with Bill 109 and the Consent to Treatment Act and then on the next page Bill 108. We always start with Bill 109 because of course this was produced within the Ministry of Health, so rather than going logically in chronology --
Mr Poirier: As someone says, we always have to be partisan.
Mr Sharpe: In our own way. We try not to be, though. Then in part 7 we get into who can decide on behalf of an incapable person. This is where I talked a bit about the hierarchy. One, as you can see on the left side, is the guardian and two, the person appointed under the power of attorney; this is the person chosen. Then we get into the hierarchical structure of different relatives and partners and so on.
The principles governing the person making the substitute decision is part 8. This, in our bill, is section 13: instructions and wishes and more current wishes. Then in subsection 13(4) I indicated we might be designating a form for a kind of advance directive. That is the notion of the prescribed form that we talk about there. Bill 108 talks about the duty of guardians, section 63 and so on, and how one resolves inconsistencies.
Living wills are specifically addressed in part 9, advance directives and durable powers of attorney. Again it gets into the question of what overrides what and how people can make out forms and ultimately change their minds.
Mr Sterling, we did not integrate that section with bills 7 and 8.
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Mr Sterling: I noticed that.
Mr Sharpe: Living wills go on in Bill 109, the next page, and then we get into Bill 108 on the bottom of the next page.
Part 10 gets into the question of the role of the advocate and the role of Bill 74. Trudy's chart being such a good guide, we repeated it here again under the role of the advocate. In case you are wondering, it is not a new chart. The role of the advocate continues on to the next page, again following through bills 108 and 109 and all the junctures where the advocate's visit is mandatory. It continues on. On the next page, again, the role of the advocate and substitute decisions and so on, and on the next page.
At the very back in the appendix what we decided we would throw in are all the provisions in the various bills that refer to one another so you could have it summarized as to where they interrelate. This is not necessarily a reference to, for example, section 10 of Bill 109, that the advocate shall visit, but a specific reference to one of the bills by name. That goes on over the next couple of pages, and that is it.
I would like to give my colleagues a chance to say something. I have been doing all the talking. Perhaps I could pause here and give them that opportunity.
Mr Sterling: If I could make a comment, I would like to congratulate your articling student on putting this together. There is a high degree of danger in doing this: We might understand what you are trying to do to us.
Mr Sharpe: We can always confuse things through our verbal discussions again.
Ms Spinks: I have a very short comment. I think both Mr Malkowski and Mr Sharpe made it very clear that what we call the rights advice function required for advocates under both bills is a very straightforward, uncomplicated function, and that we do not want to forget that although they are not related to the other bills the Advocacy Commission will be playing a much larger role in relation to systemic advocacy and the individual advocacy as well.
Mr Fram: I think there are a number of different ways you can come at the legislation. Gilbert has indicated how it will affect people, how it was originally conceived, the historic development of the legislation.
Another way of looking at this is to see the fields in which each of the pieces of major legislation is designed to operate. If you start with Bill 74 -- unlike the Ministry of Health which is big and powerful, the Ministry of the Attorney General prefers to go in numerical order -- you can see that here is an attempt to build a means to address exploitation, abuse, neglect and coercion that affect vulnerable people. That is really, in the broader social context, a new kind of thing. Often we hear, especially those who are familiar with elder issues, that we ought to have exploitation, abuse and neglect legislation.
Ultimately that legislation, wherever it has been passed in the United States and Canada, says, "What you do is give somebody authority to go in and whip the people out and throw them into a hospital," and the stronger that legislation is, the fewer the services that jurisdiction provides. If you see really powerful exploitation, neglect and abuse legislation, you can be sure there are not any services for the vulnerable. It is easy and attractive for a jurisdiction to say: "We've done something about it. Hey, we've taken care of this. Look, we have this powerful legislation." So poor provinces like Nova Scotia have wonderfully powerful legislation and it results inevitably in old people ending up in nursing homes and hospitals because there is not any other choice. The services are not there.
If we look at the issue, the Advocacy Act is a different way of going about those kinds of things. It is a way of approaching exploitation, abuse, neglect and coercion, by not giving the people who first interact with those who are alleged to be exploited, abused and neglected power over them. The only power talked about in the act is the power to visit them, power to see their records, primarily at their consent. But the action of advocacy, the visit, the ability to pose choices for someone who believed he had no choices, as a means of changing the situation as opposed to whipping them off and putting them in a nursing home or a hospital, is a major purpose behind the Advocacy Act.
It is hard when you talk about the Advocacy Act -- because it does not say, "You go in and you march up and get an order and the next thing is, you may take the person and put him in a nursing home or a public hospital" -- to sometimes get the vision of what it is that Father Sean O'Sullivan was concerned about or what my committee was concerned about when it talked about advocacy services and support in the community. To me, it is approaching these situations with that perspective we can see in Bill 74. It is a new way, a sensitive way, of attempting to approach the terrible problems vulnerable people may experience because they do not have power.
When you look at Bill 108 -- sorry, Gilbert, Bill 109 comes next -- it is the means of providing a substitute decision-maker. Now, a substitute decision-maker is not something we ever hope to have for ourselves or our friends. A substitute decision-maker makes decisions that affect our lives or our property. Hopefully, few people will need to have a fully implemented substitute decision-making situation, but we know that with a society that is increasingly aging, with a bulge coming in the number of old people we will have and thanks to treatment facilities for the number of old people who will be surviving to an older age, we are going to have to address some things that are pretty unhappy. Bill 108 is an attempt to provide the means of addressing that situation when it comes up on an ongoing basis.
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We have our first choices, which are to choose ourselves. Who will be our substitute? We have powers of attorney for property and powers of attorney for personal care. Apart from details -- the Canadian Bar Association will be talking to you about details it does not like and the property regime and other people may be mentioning details they do not like in something else -- we will be listening and you will be listening and be our guide, because some of these choices or changes Norm was talking about earlier are not easy choices to make. Choices about whether to have validation or not validation are choices that you are going to have to listen to and evaluate.
It is not a sense of keeping things up our sleeve. If they were all that easy, we would not have had years of advisory committee work; there would not have been years that went into consent to treatment legislation. They are not easy. But you and not us have a better sense of where your community is and can bring together to bear on issues and possible amendments the wisdom of that community, what makes sense. That is what the ministers have said: There are some tough things here. There is not any magic in trying to decide one way or another.
It is not that we, having dealt with it, can say there is an overwhelmingly better answer to an age question or the question of whether there ought to be a certain different kind of power of attorney. We do not have that magic. We have an outline here, we have some very detailed provisions about what people do and do not do. By and large they will stay as they are, but there are still some critical decisions you will hear. We have been listening and we have been thinking, but in the ultimate analysis you will have to think and decide, because it is your bill.
You wonder why it is separate. We have all sorts of procedures in the legislation and we have all sorts of restrictions and directions to substitute decision-makers. Whether you have appointed them yourself or whether the court has appointed them for you, those are necessary. We have found that there are abuses in the existing system for powers of attorney for property.
Judith Wahl will be here this afternoon, I believe, from the Advocacy Centre for the Elderly. Judith was on my committee and has brought the problems that she sees in the real world in serving that community, and the public trustee has brought the office's experience in addressing -- so we have attempted to address what we know of the real world in these bills and yet make the bills still work for people.
But Bill 108 is all about a regime for actually having someone make decisions for you on an ongoing basis. It also has two very important provisions in it. It has section 27 and section 59. These two, like the Advocacy Act, address the issue of exploitation, abuse and neglect of people who are incapable, people whom the advocacy service cannot provide for, people who cannot make a decision to get out, whom all the explanation in the world will not protect from exploitation, abuse and neglect. These people are the subject of inquests. These are the people about whom public health authorities say, "Help us do something," and sometimes medical officers of health rush in and do something and we do not hear about it, but what they do may not meet the test of legality.
Those provisions allow the public guardian and trustee in the most sensitive way possible that we could find to investigate allegations that somebody who is incapable is being exploited, neglected and abused and to act promptly to stop that situation by making decisions. They allow the court to make an appointment for temporary guardianship, whether it is over property or over the person. Those are decisions where power comes into the issue. Bill 108 is about power over somebody's life.
As Gilbert said, you could imagine a system where everything went to court and guardians were appointed in medical situations where people could not make their own decisions, but there are many causes in the health care system which are temporary, which do not call for guardianship, which call for somebody to get you over your coma, get you past the decisions that have to be made while you are under an anaesthetic. These and many other kinds of decisions are about transitory incapacity or incapacity you may have that relates to a difficult operation, for example, where the risks and benefits are difficult and the procedures are difficult to understand. You can understand the issues about whether you want a flu shot, but you do not know whether the hip replacement, on balance, should be chosen or not chosen, or whether the double or triple bypass should be taken or not taken in the circumstances. Those are the cases and the short-term issues which are dealt with by the substitute decision provisions in the Consent to Treatment Act.
We would overload the court system and there would be unnecessary applications if we did not have the Consent to Treatment Act. Alberta initially went to that process when it did its dependent adults legislation, but it did not have any treatment legislation. We found out that a great percentage of the guardianship applications were because they did not have consent-to-treatment legislation, and they could have avoided all those guardianship applications, or a good percentage of them, with consent-to-treatment legislation.
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Consent to treatment legislation is the short-term answer for transitory situations, for situations that are progressing or getting worse, for any number of situations -- the psychiatric situation where you have changing states of awareness -- without getting into the long-term guardianship or validated power of attorney legislation. The two fit together but they have audiences of people in different states of health.
We have then the two pieces of legislation directed at exploitation, abuse and neglect: one that does not make decisions for people, that helps to pose choices for people and that helps to get them to rescue themselves and see what their options are, as we never have had before, reaching out to people who are vulnerable, not with a fist, not with a desire to snatch and grab them and put them in an institution, but to find what they want and to give them choices; and the second for situations where there is no ability to make decisions, where the person being exploited, abused or neglected or who faces major life choices about his or her property or personal care cannot make the decisions for himself or herself and needs a substitute.
There are many people in our facilities in that state. Some people say: "What's it going to do to have guardianship? Aren't they okay now?" The answer is that we really do not know. We have had all sorts of people running facilities for children. We believed those facilities were being run properly and we are finding out now that all was not the way we thought it was. We have people inspecting nursing homes and homes for the aged, but they are inspecting standards. They are not dealing with people. We do not know what is happening with all those facilities from the point of view of the people receiving the services in the facilities. Many of those people are incapable of making their own decisions. We have found, wherever people have examined the situation, that the more people visit a facility as guardians or as advocates, the better the facility is.
The second piece of legislation is to provide a substitute, somebody who has an ongoing responsibility with respect to somebody who cannot make his or her own decisions.
The third piece of legislation has two thrusts. First of all, it addresses the issue of what is consent to treatment; what does a practitioner, whether a podiatrist or a physician, have to do to get informed consent? It then says, if you cannot give this informed consent, who can give it for you.
There are three different but related pieces of legislation that tie together but have their own separate identity, their own separate reason for being, and I do not think they can exist effectively without one another. As I have said, we would be spending horrendous amounts of money for guardianship if we do not have consent to treatment legislation, and as Gilbert has pointed out, we need a rights advice component every time we are going to take away someone's rights.
Look at the process under the Mental Incompetency Act, a venerable old act some people would like to keep. A bunch of legal papers is served on a vulnerable person by a processor, and there are a few "hear ye's" and a few "commanded to appear befores," and there is a whole bunch of legal statements of what they are going to do. If I were 80 years old and I received one, I would put it on the shelf or use it to start a fire. But somebody is then going to go ahead with the hearing. Lawyers are going to show up, son of a gun, and somebody is going to make an order, and I really do not know what this is about. I do not know what they are doing to me. I just do not want to think about it. We do not want to think about many legal things.
Under this legislation, every time the state is giving somebody power to make a decision for you, at least the rights adviser comes out and says to you: "Here's what they're planning and here is who's planning it and here's what they could do. How do you feel about that?" You might feel, "Hey, I can't really make that decision, but who is applying? Harry? Harry never knew anything about me, never cared about me. I don't mind the application, but Harry? What happened to my daughter who always shows up? It's not so bad, I can trust her, but Harry? All he wants is my money."
To at least have a chance on a human basis to oppose the application, to get legal assistance if these people will not rearrange what they are planning for you. At each stage, this rights advice is critically important. It could be pulled out of the legislation and given to somebody else, but it ties together with advocacy, because if there is something more that you want, if there are other choices you could make -- certainly no one is more vulnerable than someone who is having his rights removed -- the broader advocacy issues may come into effect here.
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Every time somebody could lose his fundamental right to make decisions for himself, we have put in a human process. We may have to resort to the court system or pass by the court system, but we are not going to do it any longer with forms that frighten people, without the human content. That is critical to the approach that has been taken in all this legislation.
I think you have to look at each of these bills separately. You are going to have, for example, detailed issues to look at in Bill 108 about the nature of the standards, the decision-making, the validation process, the assessors. You are going to look at the Advocacy Act. Does it say enough? Does it say too much? Does it give us the right direction? Is it the right composition? About consent to treatment, does it work? If not, what adjustments can be made to make it work?
These pieces of legislation are closely related yet remain separate fields of concern. I hope I have been helpful.
The Chair: Thank you, Mr Fram. Now we will allow about half an hour for questions from the committee members.
Mr Poirier: As Norman Sterling said, I appreciate this tool that is going to be most handy for us. Some accident may happen and then we may understand what all the interrelationships are.
Looking at all this, all of us will agree, no matter which side of the table we sit upon, that this is highly complex, no two ways about it. Even if we spend a long time studying this, it is still a lot of legalese in the sense that it will always remain something very complex.
Those people who are concerned, those people whom we aim to protect with this, those people whom we want to look upon as advocates and guardians and trustees, do you honestly feel they will be able to wade through this? Really, with time, even if we talk about this a year, two years or five years from now, this is most complex. I wish some of the people in the room, if they want, will come and have a look at this afterwards, just to give them an idea. This is very much of a summary of it all. This is obviously the ultimate Bible and document that will explain and decipher all of what is different and what is similar in all this. Thank God we have this, but this will not take care of everything. It is a going to be a handy tool for us to look into.
How do you honestly feel? Do you really feel people will be able to understand all that and make the subtle distinctions, the legal distinctions that may make a difference between how you advocate well or not as well? Give me your opinion.
Mr Sharpe: I can tell you what we are doing. We are writing, with communications people, material and booklets, preparing educational sessions that will explain the various dimensions of the bill, to those people who are going to be working with them.
The only example I guess I can give is what we did in 1978 when we made significant amendments to the Mental Health Act, which were very legalistic and very complex. At that time we identified the main people who were going to be working with the act -- certainly patients and their families, physicians, health care facilities and the police -- and we wrote separate communications booklets for each of those groups. For the police we produced A Police Guide to the Mental Health Act. We even went to the Ministry of the Solicitor General to use the same printer it used to produce the police manual, the black cover and everything. It was distributed over various chiefs' signatures and made part of the kits for all police officers in the province for a time in the late 1970s and early 1980s.
We wrote something called A Physician's Guide to the Mental Health Act, which was distributed by the ministry to all physicians along with material explaining their role at various stages and options.
We wrote a booklet which I think is still distributed -- it has been updated several times -- called Rights and Responsibilities: A Guide to the Mental Health Act that was geared to patients and their families. It was given to patients when they came into facilities and it was made available through the Canadian Mental Health Association and generally anywhere that groups would gather to discuss issues relating to mental health. I remember taking great pains even in the 1970s to make sure the French translation was readily available, particularly in certain areas of the province. I was told hundreds of thousands of copies of that were disseminated.
At the same time, teams were put together of ministry, government people, outside physicians, lawyers and so on to wander around the province and have educational sessions, usually located in local hospitals or wherever there was a good arena or room to do that in. We worked a lot with the media, met with the editorial writers of newspapers and others to make sure they had an understanding so that if they decided to do stories they would at least be able to report from a factual base. That was all around one act.
I would hope, and I think it is the government's intention, to undertake a similar activity here. I think it is understood that there would be a period of delay from royal assent to proclamation in order to complete the training of assessors, the establishment of criteria for assessing capacity, the establishment of the Advocacy Commission and to make sure that everything was up and running properly, creating the office of the public guardian and trustee, hiring employees and so on. During that time, once we knew the final version of these bills, we would have an opportunity to complete the material to set up the educational forums and to make sure that we ended up with documents that were geared to the specific needs of the groups that are going to be using the legislation, or the patients or vulnerable individuals themselves.
Ms Spinks: I would just like to add, as someone who has worked fairly extensively with the existing legislation -- the Mental Incompetency Act and those parts of the Mental Health Act governing the public trustee, powers of attorney, etc, and the common law -- that what we have now is terribly fragmented and very convoluted and confused. I think that over time you will realize that this package provides a much clearer code. It may be more lengthy -- it covers more areas -- but in practice it will actually be a much more coherent scheme to work with.
Mr Poirier: Do you want to comment, Steve?
Mr Fram: I think that your question is excellent. I think that what has to be done, and what I see being done, for example on doing powers of attorney, is that the forms have to be done with explanation, that there have to be workshops where lawyers on a volunteer basis will sit down with interested seniors in every community and go over what these choices are. There have to be videotapes on what it is and how to do it. In terms of applications for guardianship they have to be done in the simplest possible form that will get them into the court system, but I think we can do a heck of a lot better than we ever have before in terms of documents that people can understand.
Kits have to be made up for people who are being the guardians of property, for example, with little account books -- how to keep accounts, what you put in there -- the kinds of things to make it easy for people who use it to comply with the law. The fact is, the law right now is really complex, and on top of that, nobody pays any attention to it until somebody gets him into court. I think the idea behind this is to put all the law in one place and then make it easy for people to comply with it.
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Mr Poirier: Will the three of you be with us during the time the committee is going to sit? Will you be there full-time?
Mr Sharpe: I will not be. There are other hearings, Martel being one, and I am supposed to be running a branch of 60 people. But I will have Ministry of Health staff here at all times. Giuseppa Bentivegna, the lawyer I had mentioned, and Juta Auksi, who has been working on this material and these issues for many years, will both be available throughout the hearings, and certainly I am very much looking forward to returning during clause-by-clause discussion.
Mr Poirier: Will you be here also, Trudy?
Ms Spinks: Yes.
Mr Poirier: I could go on for hours, but I will not.
Mr Sharpe: Please.
Mr Poirier: No, I think I want to give other members a chance in the short time we have, whatever happened to the clock.
One last point was that, with all due respect to my friend the parliamentary assistant, when I read the introductory statement and when I look at the support document you provide, one sounds very simple and the other looks to be extremely complex. Of course one will say this is an introductory document. It may be an introductory document, but this is very complex material, as we can attest. Will the parliamentary assistant be with us on a full-term basis also? I have raised a lot of questions out of this statement.
Mr Malkowski: Yes, I will be here.
Mr Poirier: Fair enough. The advocates who will support people who are vulnerable will, I presume, be registered and will be fully trained on an ongoing basis?
Ms Spinks: Yes, the advocates will be responsible to the commission. The commission is mandated under the Advocacy Act to ensure that they are properly supervised and trained.
Mr Poirier: And with time there will be a moment, I guess, in our presentation so that we can discuss the possible conflicts between family and advocates, where family would come first whereas the advocates may be more trained than family members.
Ms Spinks: I think it is very important to note out of Mr Fram's talk that he emphasized that the Substitute Decisions Act and the Consent to Treatment Act are about power over people. The Advocacy Act is not about power over people; it is about trying to give power to people, to maximize their power.
Some of the confusion around the conflict perhaps arises because people do not clearly understand that advocates are not substitute decision-makers. They have no authority to do so. They are not there to impose their beliefs and their own personal preferences on the individual. They are there to show them their options, enhance their ability to make their own choices, hopefully for them to resist abuse, neglect and exploitation for themselves, and also hopefully to resist unnecessary guardianship. That is one of the main focuses of the legislation. It is not about conflict.
I think that as the groups come forward to talk to you over the next few weeks, those who do advocacy, who have first-hand knowledge of these situations, will tell you that family members generally rely on advocates, find them a wonderful resource to use and find that problems can be solved where they have struggled and been frustrated for years. The conflictual element is minimal. Granted, that will take place from time to time. There will be situations where the choices that the individual makes and has a right to make in accordance with his or her autonomy do not concur with what the family member thinks is in that person's best interests. But what we are hearing is that those situations are not the norm, and of course if an issue of capacity to make one's own decision arises, then we have companion legislation that can deal with those situations. That is what it is there for.
Mr Sterling: All of the examples of the need for such what I guess I would call "draconian" power with regard to the Advocacy Commission are based on anecdotal evidence, as far as I can determine. Do the ministries have any statistical evidence of the widespread abuse that is being talked about here?
Ms Spinks: There are obvious examples we all know about. We hear about these issues.
Mr Sterling: Anecdotal?
Ms Spinks: They are factual. We have heard about Cedar Glen as a primary example. In terms of actual statistics, we have various figures on the vulnerable population. In terms of actual incidences of abuse, I will have to ask and perhaps get back to you. That is perhaps the best way to approach that.
Mr Sterling: In that the Advocacy Commission is partisan, because of the makeup of the commission, how then can you argue that it is not going to become adversarial?
Ms Spinks: You used the term "partisan." I think it is important to note that the commission is created by and comprised of people who are from the very groups this is designed to serve. The term "partisan" is only perhaps related to the fact that the advocate's function is to act as a spokesperson for the individual.
Mr Sterling: That was a word introduced into a conversation with an advocates group, it was not my word. They admitted that the commission is going to be a partisan body.
With regard to the other part of it, in your submission you indicate that advocates will not be making decisions. What happens when an incompetent person is not conscious? They told me that in those cases they expected an advocate to make the decision on behalf of the comatose patient.
Ms Spinks: No, at no time does the legislation ever give an advocate authority to make a decision. They may identify, for example, elements of systemic abuse within a system that affect vulnerable people, and perhaps that individual in particular, and need to be redressed, perhaps policies that are wrong or are not being followed correctly, or procedures or laws that are not being implemented. Those are issues an advocate can address in a general advocacy way in terms of systemic advocacy, but the advocate is always ultimately accountable to the individual vulnerable person.
In any case, they are not there to make a decision on their behalf. They may identify a situation where an assessment perhaps is required and guardianship is the appropriate way to protect that individual. I think Mr Fram went into that. When you get to the ultimate end of the continuum, then guardianship is a route to invoke decision-making authority, but that decision-making authority never rests with the advocate.
Mr Sterling: I was reading over some of the written submissions that have been made to the committee, and I refer to two submissions, 13 and 19. Submission 19 is from a schizophrenic patient who says:
"Primarily my concern is that I am aware that when my illness is acute I am too scared (paranoid) to subject myself for needed medical intervention. On the other hand, when I am well I realize that I need medical intervention should my condition relapse.
"I need the law to allow me to pre-determine how I will be treated. The laws must allow my healthy wishes to override the wishes I have when I am in relapse and psychotic and delusional."
I also read from a parent of a schizophrenic patient. He summarizes, writing about, I believe, his son, "As Dickens might have put it, `If the law supposes that the insane are capable of supervising their own therapy, then the law is an ass.'"
How are we going to deal with this situation?
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Mr Sharpe: Under the legislation as drawn, that person, when well, could indicate his desire, either through a power of attorney for personal care, choosing someone he relies on, or, under Bill 109, through an advance directive, to indicate that should he become incapable he wants certain action to be taken, which might entail admission to a psychiatric facility and treatment.
This may be an issue the committee would want to discuss after the Friends of Schizophrenics have presented, but the way the legislation is now drafted, when that person becomes incapable -- and of course they may question that -- because they go off their medication, lack insight and may not be prepared to acknowledge that they are incapable at that point, but even if they were, their admission to a psychiatric facility could then only be undertaken on the basis of a guardianship order that specifically recognizes the question of admission to a psychiatric facility. That could delay admission and could present, in the view of some, some difficulties.
The question becomes, should some modification be made to the legislation empowering such an individual to decide in advance that he be taken to a psychiatric facility and admitted, by force if necessary, without the need to go to court and obtain a specific guardianship order, or are we too concerned about treading, at that point, on the liberty of the individual too cavalierly if, down the road, the police must be used in order to acquiesce to that request, when under the consent act they can always change their mind later on?
Are they capable of changing their minds? Are they competent? Because in my view there is then a potential risk of circumventing the protections of the Mental Health Act and using a side-door approach to committal on the basis of presumed incompetence or someone's view that the person may be incapable without the strict criteria and procedures set out in the Mental Health Act.
Mr Sterling: Can a person exclude an advocate from representing his or her interests in the future? In other words, if I decide I do not ever want an advocate representing my interests, can I exclude that person?
Mr Sharpe: The way the act is drafted now, the answer would have to be no. The advocate's visit is triggered at the time someone is going to make a decision, either under 108 or 109, that their rights are going to be removed. At that point, they could refuse to see the advocate, but I do not think the way the acts are drafted it is now possible for them to do that in advance.
Mr Fram: I agree with you, Gilbert. Right now, when the advocate shows up or the rights adviser, they would have a right of audience. You could then tell them to leave, but it is not like the efforts to get rid of junk mail. You cannot put in something that says, "Do not deliver an advocate to me ever."
Mr Sterling: You see, the problem is, when I receive junk mail, I am usually sane and not confused. My concern is that if I make out a power of attorney dealing with my wishes and want my son or daughter or whatever, I do not want an advocate confusing me at a later point. I implicitly and explicitly trust my children to take care of me and make decisions for me. Why should the state be interfering with my family?
Mr Fram: It is an excellent question. If we look at the exact issue you talk about, you have now chosen somebody to make a decision for you. The question that arises is, "Yes, I chose someone, but not now." You chose someone believing he would act in absolute good faith, who would act when you became incapable. When you later come down the line, and in between you have won the lottery and you have made a liaison with a person who delights you, and all of a sudden your family is now believing that you have become incapable, but you are quite certain that you are not only sane but happy for the first time in many years, should your actions be the trap? I think those are tough kinds of questions. I do not have an answer to that.
Mr Sterling: Steve, you are exaggerating to the extreme in terms of your example.
Mr J. Wilson: Well, he going to win the lottery --
Mr Sterling: Maybe not the lottery.
I take great exception to this part of the legislation. You are talking about state intervention into the family situation, which is so abhorrent to me that I find it unbelievable that the legislation would be drafted in this way and would not allow a person to exclude the state from making these decisions.
Mr Fram: Norm, ask the same question of Judith Wahl, who sees what is out there in the seniors' community, that is all.
Mr Curling: I just want to make some observations, since I have been sitting on the committee for a short time. I ask all those who are drafting this bill and making amendments to take a couple of things into consideration. My observation is that it is almost a give and take. I want to take away some of the rights of people and I want to give them to some other people, and I presume that is what advocates and surrogates and all of those are about.
I ask them to keep in mind that in our population here in Ontario about 25% of the adults are functionally illiterate. As we talk about complexity, and my colleague talks about how complex this is to understand, and you said what we need are a lot of workshops -- although I do not know who is going to attend those -- and a lot of explanation and flyers that are going explain to those people. Carrying your analogy about the junk mail further, many of those who are functionally illiterate are throwing out junk and whatever is good at the same time. They have not been selective in that process.
I take it a bit further. We used the statistic of about 25%. We are saying that there is a greater number of people who are functionally illiterate in our society. That statistic did not include people in institutions, and we speak very much about the elderly and even people who are incarcerated whose reading capacity is even less than the statistics we are shown.
So I am saying to you that when we talk about advocates and appointments to all these people, I want to see how this mess is going to be passed on to them in a manner of understanding this sort of complexity. Furthermore, they have so much bureaucracy looking after them that they are utterly confused, whether they go to workers' compensation, human rights, or they go to race relations or they go to the Ombudsman. Here is another area itself.
The next point I would like to make is that in educating this diverse, multicultural society about all these loops that overlap, the message must be given in a way that is understood in that community. So I am just putting your group on notice that my approach to the questions will be coming from that aspect of it and I hope it is taken into consideration.
Mr Winninger: I just wanted to come back briefly to Mr Sterling's point. He raises the spectre of state intrusion where the vulnerable person wishes to avoid any kind of advocacy. I wonder whether there might not be a great deal of danger in that, because if the vulnerable person is alleged to have signed a piece of paper saying, "I don't want any advocacy now or ever in the future," unless an advocate actually comes and talks to that vulnerable individual, how are we ever going to really know whether (a) that piece of paper was signed under duress, coercion or compulsion, undue influence, and (b) at the time that person signed that waiver, if you will, of advocacy, this person had the capacity to sign it? I really think you are getting into a Pandora's box when you say someone should be able to execute a permanent waiver, because that way there will never be any investigation, there will never be any review and all kinds of horrible abuse and exploitation can take place in the kind of scenario you raised.
Ms Spinks: If I could just add a point there, you have to remember that the rights advice that is taking place at the time that the power of attorney is validated is simply that rights advice. It is a very quick, short-term involvement and thereafter the attorney is free to carry on privately without any involvement, necessarily, with an advocate unless there was something inappropriate being done.
Mr Sterling: I guess they just view the world entirely differently than I do. I view abuse by a family as being a very ordinary kind of action and I take great exception when the state wants to step into a family situation where it need not be.
The Chair: On behalf of the committee I would like to thank Mr Malkowski, Ms Spinks, Mr Sharpe and Mr Fram for giving their presentations. I am sure we will be looking forward to further input as these hearings proceed.
Before we recess for lunch I would like to inform everybody that the heating system will be down for at least four hours, so if you want to bring jackets in this afternoon, go ahead. We stand recessed until 1:30.
The committee recessed at 1201.
AFTERNOON SITTING
The committee resumed at 1337.
PETER SINGER
The Chair: I call this meeting back to order. I would like to call forward the first presenter, Dr Peter Singer. Good afternoon and welcome. Could you please present yourself for the record. We will allow you a half-hour for your presentation. If you could make it a little shorter and allow time for questions from each of the caucuses, it would be very much appreciated. Please proceed.
Dr Singer: My name is Peter Singer. I am the associate director of the Centre for Bioethics and an assistant professor of medicine at the University of Toronto. I obtained my medical degree from the University of Toronto in 1984 and my master of public health degree from Yale University in 1990. I am a fellow of the Royal College of Physicians and Surgeons of Canada and of the American College of Physicians. I practise internal medicine at the Toronto Hospital.
I appear before the committee to report on research I have conducted regarding the proposed legislation. As such, I wish to acknowledge my research support. The Centre for Bioethics is supported by a health-systems-linked research unit grant from the Ontario Ministry of Health, and I am supported by a medical scholarship from the Canadian Life and Health Insurance Association. However, the views I shall express are my own and do not represent the position of these sponsoring groups. Moreover, I do not represent the official position of my university, faculty, department or centre.
I shall focus specifically on certain sections of Bill 109, the Consent to Treatment Act, and section 47 relating to powers of attorney for personal care of Bill l08, the Substitute Decisions Act. I will not consider section 15 of Bill 109 or subsection 47(6) of Bill 108, which relate to research. These sections will be discussed by my colleagues from the University of Toronto who are scheduled to appear before this committee, including Dr Fred Lowy, Dr Eric Meslin, Professor Bernard Dickens and Dr Bill Tucker.
This presentation provides data from a public opinion poll of 1,000 Ontarians. The poll was carried out by telephone by Environics Research Group from September 5 to September 26, 1991. The random sample produces a sampling error of plus or minus 3.1% in 95 out of 100 samples. The principal limitations of this poll, as with all telephone opinion polls one reads about in the papers, for instance, is non-response bias. To clearly separate data from commentary, I have put the data in italics. I also wish to acknowledge the collaboration of Sujit Choudhry, an undergraduate student at McGill University, in this research.
My presentation will follow the order of sections in the legislation, beginning with Bill 109. Regarding the requirement for consent in section 4 of Bill 109, we asked Ontarians the following question, "Do you think a doctor should or should not give a patient all information about medical treatment, including benefits, risks and alternatives, before the patient decides whether to undergo treatment?" Ninety-seven per cent said the doctor should.
We also asked the following question, "Is it ever of benefit to a patient for a doctor to withhold information from the patient about treatment?" Twenty-five per cent answered yes to this questions.
We also asked, "If a patient's family asked a doctor to withhold information from the patient, should the doctor ever do so?" Thirty-three per cent of Ontarians answered yes to this question. This discrepancy between public opinion and the proposed legislation regarding the requirement for disclosure as part of consent suggests that either the legal standards should be reconsidered or public education is needed. With all empirical data of this type, one is always left with those two sorts of conclusions.
In terms of the age of capacity found in section 8 of Bill 109, we asked Ontarians the following question, "At what age do you think people should be allowed to visit doctors and receive treatment on their own without parental knowledge or consent?" The average answer was 16 years of age; 50% of the respondents gave answers between 16 and 18 years of age and 90% of the respondents gave answers between 12 and 19 years of age. These data suggest the age of 16 years for presumption of capacity is reasonable.
With regard to advocacy as required under section 10 of Bill 109 -- I am not referring to the Advocacy Act here -- we asked Ontarians the following question, presenting them with this scenario, "Suppose a person became sick, and a doctor determined that he/she was not mentally capable of making a particular health care decision. In each of the following circumstances, do you think the law should or should not require an individual called an advocate to meet with the sick person to explain that he/she had lost the right to make that health care decision and that someone else would be making it for him/her?"
In the first situation, the first circumstance, "when the health care decision is a serious one, for example, whether to have heart surgery," 78% of Ontarians said the law should require advocacy. In the second situation, "when the health care decision is not a serious one, for example, whether to have a dental filling," only 33% of Ontarians believed the law should require advocacy as described in the scenario. In the third situation, "when the cost of providing the services of an advocate is paid by the government and therefore could cause your taxes or the provincial deficit to go up," 61% still agreed that advocacy should be required by the law.
Public attitudes towards advocacy were positive. However, when the decision changes from a serious one, such as heart surgery, to a less serious one, such as a dental filling, public support for advocacy is halved. These data suggest that the scope of the advocacy requirement might be reconsidered -- scope in terms of treatments to which it applies. Unfortunately we did not assess whether practical problems in implementation of advocacy services, such as delay of treatment while awaiting the advocate's visit, would affect this public support.
Despite this apparent public support, I have reservations on theoretical grounds about advocacy as proposed under section 10 of the Consent to Treatment Act. For reasons explored in the article which I have attached to this submission, I believe the need, effectiveness and cost-worthiness of advocacy services have not been conclusively established. As an alternative, I suggest that mandatory advocacy, as required by section 10 of the consent act, be evaluated on a trial basis in a few designated facilities. At the same time, advocacy services could be made available on request to all patients in Ontario. Moreover, I am concerned that the advocacy provisions of Bill 109 will protect against overtreatment but not against undertreatment of vulnerable persons, which in my anecdotal experience as a clinician is a more serious problem.
Regarding consent on an incapable person's behalf, which is found in sections 14 and 16 of Bill 109, we asked Ontarians the following two questions: "If you became unable to make medical decisions for yourself because you were in a coma, but you had left wishes to guide your medical treatment, how should others make these decisions for you? Should they follow the wishes you left" -- the response given by 77% -- "do what they think you really want" -- the response given by 6% -- "do what they think is best for you" -- the response given by 16% -- "don't know/no answer" -- the response given by 1%.
Similarly, regarding who should be the substitute decision-maker, we asked, "If you became unable to make medical decisions for yourself because you were in a coma, which one of the following individuals would you want to make these decisions for you?" We gave a hierarchy very similar to that found in section 16 of the consent act, with one exception, as I will mention in a moment: your spouse or partner was the response given by 58%; your parent, 14%; your doctor, 10%, and that is the exception I will come back to; your child 16 or older, 7%; your brother or sister, 6%; a friend, 2%; another relative, 2%.
These data suggest that the hierarchical ranking of the principals for substitute decision-making in section 14 and the persons authorized to make substitute decisions, section 16, is reasonable. However, it is interesting that 16% of respondents prefer best interests and 6% prefer substituted judgement even when clear prior wishes are available. Moreover, 10% of respondents want their doctor to make treatment decisions for them. These respondents are requesting physician paternalism and rejecting patient autonomy. Thus, 10% to 20% of respondents disagree with the fundamental tenets of the legislation. Public education programs may be needed here.
Regarding emergency treatment of incapable persons, found in sections 22 and 23 of Bill 109, I am concerned that the definition of "emergency" in section 22 may not include most medical as opposed to surgical emergencies. For example, a patient with a myocardial infarction, heart attack, is not "likely to suffer serious bodily harm within twelve hours" -- or even promptly -- "if the treatment is not administered promptly." Such a patient is not likely to die within 12 hours, but the patient certainly may die. Thrombolytic therapy reduces the risk of death by about 3%, from about 12.8% to 10% on average. Would thrombolytic therapy for a myocardial infarction, widely hailed as the most significant medical advance in the treatment of coronary artery disease in the past decade, count as an emergency treatment under the proposed Ontario legislation? I am not sure. Many emergency medical treatments provide similar margins of benefit. The definition of "emergency" should possibly be clarified to include such treatments if it does not do so now.
With regard to section 23 of the consent act, we provided respondents with the fact situation in Malette v Shulman, the case on which this section appears to be based. We gave them the following scenario: "Suppose an unconscious adult was brought into an emergency room following a car accident. A doctor determined that if the patient's life were to be saved, the patient would need a blood transfusion. However, the patient was carrying a card stating that blood transfusion was against his or her religious beliefs and that he or she would not want it under any circumstances. Efforts to contact family members had failed. Do you think the doctor should or should not give a blood transfusion?"
Some 48% of the public thought the doctor should and 45% thought the doctor should not. I believe public opinion is split on this issue because of uncertainty regarding what the patient would really want if faced with the actual choice of blood transfusion versus death. I have argued elsewhere, and attached that argument to this submission, that in the face of uncertainty about the wishes of an incompetent patient in an emergency, physicians may make two types of errors: providing unwanted treatment and withholding wanted treatment.
The latter error, in favour of death, we argued is more serious than the former error in favour of life. The critical clinical question, however, is how much information regarding the prior wishes of an incompetent patient is sufficient to support a decision to withhold a simple and possibly lifesaving treatment in an emergency. For example, it might be reasonable to forego life-sustaining treatment in an emergency on the strength of a power of attorney for personal care, as required by clause 23(a) of the consent act or on the strength or the request of a substitute decision-maker combined with written wishes from the patient. But perhaps it may not be reasonable to forego such treatment in an emergency on the strength of any written or oral wish, as required by clause 23(b). Therefore I suggest that either clause 23(b) should be deleted or "wish" should be more clearly defined.
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Regarding powers of attorney for personal care, and here I am referring to section 47 of Bill 108, we asked Ontarians the following series of questions: "Do you think that people should have the right to request the withholding or withdrawal of life-sustaining treatment?" In response 85% said yes, they should have the right. "Have you discussed with your family what life-sustaining treatment you would or would not want if you became unable to make decisions for yourself?" In response 36% said yes, they had had such advance discussions.
"A `living will,'" we explained, "is a document you make to guide treatment decisions when you become unable to make these decisions for yourself. The `living will' may specify who shall make decisions for you and/or what life-sustaining treatments you do or do not wish to receive. Have you filled out a living will?" In response 12% of Ontarians said yes, they had.
Finally we asked, "Do you think a `living will' should include just the name of the person appointed to make decisions for you, just the life-sustaining treatments which you do or do not wish to receive, or both?" In response 83% of respondents answered that such a living will should include both the who and the what.
These data highlight the gap between positive attitudes towards decisions to forgo life-sustaining treatment and actual advance discussions or directives. To bridge this gap, public education programs may be needed. The success of such public education programs can now be measured because our poll provides an estimate of the baseline prevalence of advance discussions and advance directives of living wills in Ontario, data I think were previously unavailable, as far as I am aware.
Also, because instruction and proxy directives are complementary, as described in another article attached, and because there is such strong public support for combined directives, regulations regarding the power of attorney for personal care, mentioned in subsection 47(8) of Bill 108, should prescribe a combined proxy-instruction directive form. Several other policy questions related to advance directives are also explored in the third article I have attached. Thank you for the opportunity to appear before you today. I look forward to your comments and questions.
Mr Poirier: Dr Singer, are the questions we have here the complete list of questions you put forward in your survey?
Dr Singer: It is not a complete list. There are about three or four questions I have omitted for purposes of time. These are certainly the most interesting ones.
Let me enumerate the ones I have not included so there is no question. I have left out a follow-up question to the question about, should a doctor withhold information if requested to do so? We also asked under what circumstances should this occur. Most people said things like -- and now I am going from memory -- when the patient cannot handle it, when it would hurt them, the sort of responses you might expect to ground a non-disclosure on the basis of therapeutic privilege.
We asked as well a question following up the Malette scenario where we said, "If a family member was now available and confirmed that the patient actually wanted this withholding of treatment, would you change your answer?" About half did, of the half who thought one way in the first place.
Finally we presented two other scenarios under the section 10 advocacy scenario, and those were really just methodological questions to check wording. We asked, "If it were a family member who required the services," the advocacy services, and we also asked, "If it were you who required the services" -- remember the other one is in the third person, "a person" requires the services, and those results were not surprising: They were very similar to the third-person responses, about 60% to 70% support, as I recall.
As far as I can remember offhand, those are the only questions we asked that I have not included, but there certainly are no explosive or sensitive issues I have not included. I really made those omissions for purposes of time.
Mr Poirier: There are a couple of points I wanted to make. On page 2, when you are talking about age of capacity, for example, I look at, "Average answer was 16 years" of age for "should be allowed to visit doctors and receive treatment on their own without parental knowledge or consent" and "50% of respondents answered between 16 and 18 years, 90%...between 12 and 19....These data suggest that the age of 16 years for presumption of capacity is reasonable," for that particular bill anyway, for Bill 109.
Obviously you, as medical doctors -- maybe not you personally in your particular field, but surely there will be much younger than 16 -- well, not much younger. I do not have much of a margin there, but let's say 12 or 13 or 14 for some particular types of cases where a much younger person than 16 would want to see a medical doctor without consent from the family or parent.
Dr Singer: Yes.
Mr Poirier: Does that not cause you a problem?
Dr Singer: Let me address that this way: My understanding is that there is a presumption of capacity at 16 but it is rebuttable on both sides, so perhaps that rebuttal would handle the situation of a 12-year-old who was capable.
But I should really explain what I mean by "reasonable." What I mean by "reasonable" is that the normative basis of the legislation, which sets a cutoff at 16, is close to public opinion. That is all I mean. One may find it unreasonable on normative grounds to set that age. Really all I mean is that there is at least a concordance between what the legislation says and what people say if you ask them that question.
Mr Poirier: How about medical authorities in the population versus legal legislation and the people?
Dr Singer: Medical authorities versus law?
Mr Poirier: Not versus law, but versus what people perceive to be reasonable. I am not saying lawyers are not people, but then that is another story.
Dr Singer: In terms of the public, Ontarians in general, their average answer is 16. In terms of a group of lawyers or a group of physicians, I could not answer what their average answer would be because we did not do that survey. In terms of my own personal opinion as a clinician, I really should not offer it, because this is more related to those who practise paediatrics and possibly obstetrics and gynaecology. I am an internist, mostly dealing with adult patients, so I would leave that for others in terms of expert opinion.
Mr Poirier: That is why I said maybe it does not apply to you personally for what you are doing --
Dr Singer: Right.
Mr Poirier: -- but you are not aware of groups of medical professionals coming together and discussing an age of preference, what they perceive to be reasonable, or age of consent and whatever? You are not aware of that type of discussion?
Dr Singer: I personally am not aware of such a discussion, although I would not be surprised if such a discussion occurred before the committee over the next month or so.
Mr J. Wilson: It is a very interesting survey you conducted. On page 3 you raise the thought that perhaps the scope of advocacy as envisioned in the acts is too broad. You do that in the way of distinguishing between a serious illness and a not-so-serious illness. Would you envision legislation that would essentially attempt to list which cases would be deemed serious and not serious? What are you thinking in that area?
Dr Singer: I think these data suggest that such distinctions, possibly in regulations, might be helpful, but that is only if you accept that what public opinion is is what you want to do. You really have to make a separate normative determination.
Mr J. Wilson: Why would we start now?
Dr Singer: Why would you start now?
Mr J. Wilson: I was only joking.
Dr Singer: I think public opinion can only make you reconsider the tenets of legislation. If the public disagrees with what you are doing, then that is cause for reconsideration, but it is not determinative that you must make a normative change.
Mr J. Wilson: As a clinician, though, you would not see it as unwieldy, as having to memorize lists of cases where an advocate would have to be called in?
Dr Singer: I think the benefits of such regulations, which restrict the scope of advocacy, would outweigh the burdens in terms of advocacy across the board. I am taking a good-faith effort on advocacy here. This is the part of the legislation, section 10, and I am now talking about the Consent to Treatment Act. Everything else in the legislation is very close to what doctors do or say we should do. Section 10 is completely new. I think that in principle it is a good idea, and as I walk around the wards I could see how advocacy services would help. I am concerned, though, about the way they are formulated here in section 10 in two regards. One is the very broad scope to which they apply in terms of the scope of treatments. Second, I do not think, as I argue in an attached article, that the need, effectiveness and cost-worthiness of such services is clearly established.
My response, my suggestion, is, let's start the program, evaluate it and make it available at the same time widely, but more study would be helpful before it were adopted broadly. But that is now moving away from the data; it is my own personal opinion and it is supported by arguments attached. I also think, as I say, that undertreatment is a more serious problem than overtreatment, and I am not sure that section -- can I be specific?
Mr J. Wilson: Yes. Do you have a particular experience in mind?
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Dr Singer: I will make it a generic experience so as not to have any confidentiality problems.
For instance, a patient with a diagnosis of schizophrenia who is institutionalized in a mental hospital and who is non-verbal comes to the emergency room with chest pain. Perhaps an electrocardiogram and blood tests show that the person has had a heart attack. At times, such a patient will have a more difficult time getting into a coronary care unit than other patients. In other words -- this is based on anecdotal experience; I cannot actually say it is the truth, but it is my impression -- that is an example of undertreatment, where we do not provide the services indicated for that problem as aggressively as we might. That is, I think, at least as serious a problem as overtreatment. It is not clear to me that section 10 will protect against that, and therefore a little more fine-tuning in terms of how the advocacy will be implemented may be warranted to optimize the situation for all parties working together in good faith.
Mr Wessenger: I was just looking at page 4 of your report where you suggest the definition of "emergency" should be clarified to include a broader scope. It has been suggested that a couple of changes could be made with respect to the definition of "emergency." One of those changes that has been suggested is deleting the 12-hour time frame, and also to provide treatment for severe pain. Do you believe those type of changes would be sufficient to clarify the situation with respect to the definition of "emergency"?
Dr Singer: I do not, actually. I think those are helpful steps forward in this section, but I do not believe those two amendments would address the problem of heart attack that I am presenting. It may well be that the current language of the emergency provisions would permit such a heart attack to be declared an emergency; I am just not sure. Given that I am not sure, I put it forth for perhaps a determination on that. The problem is this: It is not the promptness; it is not even the treatment of pain, although perhaps that would help on the heart attack side. The problem is that often something happens to people, like a heart attack or a blood clot in the lung, and we are trying to prevent that happening again. There may only be a 10% or 12% chance that it will happen again or get worse, and even the best treatment will only shave a few per cent off that 10%; in other words, an absolute risk-of-death lowering from, say, 13% to 10%, as in this case. It may well be that such a situation would count under the emergency provisions of the legislation. I am just not sure.
My problem is that if it is only a 13% chance of dying, it is not "likely" the person will suffer serious bodily harm; it is possible. The benefit is not like surgery on an appendix, where it is an all-or-nothing situation; it is just shaving a 3% margin off. But many medical treatments have that sort of margin.
Really, I am requesting clarification here more than anything else. It may be that the current language includes the situation. I think it is just a useful one to put forth for the committee to consider because coronary disease is a very serious threat to the health of people. It is a big killer.
The Chair: Dr Singer, on behalf of this committee I would like to thank you for appearing before the committee this afternoon.
CANADIAN BAR ASSOCIATION -- ONTARIO
The Chair: Our next presenter is from the Canadian Bar Association -- Ontario. Good afternoon. Could you please identify yourself for the record and then proceed.
Mr Heighington: Good afternoon. My name is Heighington. I am the treasurer and a member of the executive committee of the Canadian Bar Association -- Ontario. If I may introduce the other members of the panel, all of my colleagues are members of the trusts and estates section of the Canadian Bar Association -- Ontario and they have participated in the detailed analysis which is before the committee regarding Bills 108, 109 and 110. They will address you regarding the impact of these proposals on the public and the administration of justice.
Mr Barry Corbin is in the audience. He is the chair of our trusts and estates section. He spoke to this committee last May respecting Bills 7 and 8. There are two important aspects of Bills 108, 109 and 110 which affect the rights of persons who are unable to make their own decisions. Dona Campbell of the firm of Miller, Thomson will deal with the personal health care aspects, and Professor Ralph Scane of the University of Toronto law school will deal with the property aspects.
Ms Campbell: Good afternoon. We will be addressing what is found in our submission as part I, the personal care issues.
We are aware of the deficiencies in our current legislation dealing with substitute decision-making and acknowledge that the new legislation attempts to address these deficiencies, but we have very grave concerns about the new legislation. Put simply, it is our view that this proposed package is simply too cumbersome, too costly and far too intrusive, requiring unnecessary governmental scrutiny over surrogate decision-makers.
The difficulty is that concerns relating to care decisions in acute and terminal conditions are distinctly different from the important issues that should be considered regarding care decisions for psychiatric patients. In our view, however, Bills 108 and 109 are geared to the protection of the psychiatric patient population and are inappropriate in the context of most acute and terminal conditions.
You will see that part E of part I of our submission gives examples of different health care scenarios and demonstrates different issues in each context. It is our recommendation that different categories of health care should be dealt with differently.
I would like to address specific concerns with Bill 108. In order to implement the proposed vetting and policing of surrogate decision-makers contemplated in that bill, it will be necessary to completely reorganize and vastly expand the services of the office of the public trustee. A new level of bureaucracy will be created. In our view, the expense will be enormous. Is it necessary?
Essentially, our submission recommends limiting proposed governmental supervision. We recommend a legislative policy that is reactive, not proactive. Mechanisms could be put in place to quickly respond to perceived abuses. We acknowledge that the current response procedures should be more efficient than the current court application to remove a committee of the person.
It is our view that in the first instance an individual's choice of a surrogate decision-maker should be respected. A personally selected decision-maker should be permitted to act without the imposition of this costly and time-consuming scrutiny of the validation procedure or the advocate process. The appointment of a health care proxy should be encouraged by a system that is easily understood by all. It is for this reason that our submission recommends simplification of the requirements to execute or revoke documents necessary to appoint a proxy.
We have other concerns with Bill 108. It is inappropriate to impose a positive duty on a proxy to comply with any wish given by an individual prior to incompetence. What if, for example, euthanasia has been requested? Should a proxy not be permitted to ignore care instructions where necessary, such as instructions that are medically unsound or unethical?
Furthermore, the legislation does not address circumstances in which instructions could result in the infringement of the rights of others. To give an example, Bill 8 provides that a living will should be invalid during pregnancy. Do the unborn or fathers have rights that should be protected and recognized over care instructions? We take no position. We are merely raising this as an example.
Finally, we are very concerned about the determination of incapacity under this bill. The Mental Incompetency Act currently requires a determination of incompetence beyond a reasonable doubt, but Bill 108 requires a balance of probabilities. This perhaps is satisfactory in an urgent situation, where alternative consent is required, but is this appropriate for the purpose of imposing a long-term substitute decision-maker?
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The criteria for establishing competence are troubling. A person can be "incapable of personal care" if unable to understand information concerning clothing, hygiene and nutrition. By whose standards? We are concerned that the inclusion of these subjective criteria represents a failure to tolerate and respect differing standards exhibited by different individuals.
I would like briefly to mention some points about Bill 109. Bill 109 prohibits any health practitioner, widely defined, from giving any treatment, again widely defined, without consent. This valid consent, whether given by proxy or by the patient, must be specifically related to the treatment. It must be voluntary and informed. But consent is only informed if the person giving it has received all information about the treatment -- alternative courses of treatment, the material effects, risks and side-effects -- that a reasonable person would require to make a decision. How far must we interpret alternative courses of treatment? Further, in whose opinion will the risk or effect be material? In the patient's? In the practitioner's? Will an effect be material if it is rare? Will it be immaterial simply because it is insignificant to health?
Provision is made for treatment without consent, but in specified emergency situations. Dr Singer has already addressed narrowing the scope of this. He has addressed certain problems with this, because we believe the emergency exception is far too narrow. As Dr Singer has already told us, if the person is incapable of giving consent, treatment can only proceed without alternative consent if the delay is likely to result in serious harm within 12 hours. While it might be appropriate to ask a practitioner to determine whether serious harm might occur -- and even Dr Singer is unsure of this -- we believe it is totally inappropriate to require determination of when serious harm will occur.
The treatment without consent can only continue for 72 hours. This time frame will be insufficient to permit the continuation of emergency care throughout, for example, a three-day holiday weekend. What if family members cannot be located? We recognize that the public guardian and trustee can make a care decision where no other is available, but we are very concerned that this will require costly overtime staffing of the office of the public guardian and trustee to permit standby emergency consent where necessary throughout the province during holiday periods.
We are very concerned about the costly duplication of services in the determination of incapacity. If a health practitioner finds a person to be incapable to give consent, and that person is conscious, an advocate must in all cases meet with the incapable person to determine whether he or she wishes to contest the finding by application to the Consent and Capacity Review Board. But if we assume that the practitioner has the expertise to make a determination of incapacity in the first place, is it cost-efficient to review that expert finding in all cases? How often will the board likely reach a different conclusion? Further, consider the cost even should review not be required.
We have this procedure now under the Mental Health Act, but under the new legislation we are not talking about admissions to psychiatric facilities. We are talking about any treatment in a wide variety of care facilities whenever a patient is incapable through shock trauma. In each case an advocate would be required to visit and report. Our concern is that the whole costly process will make health care unnecessarily adversarial.
Finally we are concerned with the health practitioner's protection from liability. Other proxies are held to a standard of good faith, but for a health practitioner to be protected from liability, he or she must have reasonable grounds for believing that consent or the refusal to treat is sufficient. How will we determine reasonableness? Why is a standard of good faith not applied to the practitioner? Furthermore, a health practitioner will only be protected from liability if treating without consent if the emergency falls within the strict criteria set out in the bill. That requirement of likelihood of serious harm within 12 hours should give grave concern to all practitioners.
Mr Scane: I would like to address the committee on the portions of Bill 108 which deal with the care of property of the incapable person. As an introduction, the Canadian Bar Association -- Ontario approves, in general terms, the infrastructure which the Fram committee called a public safety net. We submit that as prepared and proposed by Bill 108, it is an unduly expensive situation, and in any event is going to be found to be undesirable in some specific areas. As an organization, we understand and indeed sympathize with the concern to protect the incapable person from economic victimization at various stages of the process, but we believe some of the amendments we are suggesting will permit a less costly public structure without significant dilution of protection for the incapable person.
As a preliminary observation, I urge members of the House that the Legislature should not even contemplate introducing or passing this bill in this form unless the government is prepared to adequately fund the public trustee's office to staff it sufficiently. If you do not do that, you are likely to build in some serious detrimental consequences for incapable persons, because there will be inevitable delays built into the process of taking over the affairs of incapable persons, and that can, for obvious reasons, be extremely prejudicial to their financial wellbeing.
The proposals we make in the report are often very detailed because of the nature of the subject matter and of the bill to which we are trying to respond. We propose to mention in this area only a few of the highlights. If the committee or its staff desires more discussion of any more detailed proposals than is possible in the question period here, the members of the Canadian Bar Association -- Ontario are prepared to assist the committee at any later time that is convenient.
First, let me just reprise for a second: Bill 108 proposes that on either the granting of a certificate under the Mental Health Act or the finding of incompetency under the more informal assessment procedures proposed by the bill, any existing continuing power of attorney -- that is, a power of attorney which continues past the acquisition of incapable status by the person who granted the power -- is terminated and the public guardian and trustee will become the statutory guardian of property. Then the bill goes on and says that the continuing attorney has the power to apply to replace the public guardian and trustee again, and indeed will have priority over any other applicants to replace the public guardian and trustee and will have the advantage of being able to do so without bond.
Even with these concessions, we believe the choice made by the now incapable person while that person was capable is insufficiently respected. The bill proposes a vetting procedure -- that is my term; in other words, a checking out of the personal characteristics and capabilities of the proposed successor to the public guardian and trustee -- and the preparation of a management plan which will also be reviewed by the public guardian and trustee before anyone will be permitted to replace that officer as the statutory guardian.
Those reviews, if they are to be meaningful, should not be perfunctory. If they are not perfunctory they will be expensive -- at the cost of the estate, presumably -- to prepare and time-consuming to review. You are building in a very considerable delay in any estate that is not extremely simple, and that does not necessarily mean very large. This potential delay in taking over again by the person who will have the long-term responsibility for looking after the economic affairs of the incapable person could be very harmful to the estate. We do not agree that this is a necessary delay when the person to take over is the person who has been chosen by the now incapable person, while that person was capable of doing that job.
We propose essentially that a continuing attorney should be able to take over from the public guardian and trustee by a very simple application not involving either that personal vetting procedure or review of the management plan.
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In other cases, with just one exception, we generally agree with the proposals of the bill. The exception involves the ability of a family, as we very narrowly define it in our submissions, acting unanimously to appoint a person to replace the public guardian and trustee without going through the vetting procedure or the management plan. We feel the immediate family is normally the most concerned about the wellbeing of the incapable person, including that person's financial wellbeing. Our requirement for a family, that it consist of at least two persons and that they be unanimous, we believe sufficiently protects against the potential for abuse.
There are a number of formal requirements proposed by the bill that are obviously designed to protect against exploitation of the incapable person by persons who would seek to procure a continuing power of attorney while the donor, the person of whom the power is asked, is already in an incapable stage. We approve the object, obviously, but we feel that there is overkill, which may have self-defeating aspects.
Certainly the proposals of the bill, if implemented, will have the effect of making supervision of creation of continuing powers by lawyers more expensive than it otherwise would be. This, despite the cynics who may be listening to me, is not a self-serving observation, or certainly is not intended for that purpose, because it may lead to more persons avoiding legal professional involvement in this particular area. I submit to the committee that the protection against exploitation that the involvement by reputable lawyers in the process can give is a very substantial protection indeed.
Also, and this one has given us considerable concern, we object to imposing upon a witness to the execution of the document the obligation to state an opinion as to a person's capacity, even in the negative form in which the bill is presently expressed. If the witness takes this seriously and the requirement offers very little protection, except in the most extreme and obvious cases if the witness does not take it seriously, the witness should have had sufficient opportunity to observe the various factors set out in section 8 of the draft bill. Even then, mandating an expression of opinion on this subject we think is too much to ask of a layperson. What you are doing, again, is building in a high cost factor simply because you are going to find it very difficult to find competent witnesses who are not also excluded in the act by the exclusionary provisions for witnesses.
We also have very serious concerns about the duty of care imposed on continuing attorneys and statutory guardians. The bill is obviously trying to introduce what the Fram committee called objective decision-making, the making of the type of decision that the incompetent person would have made if competent, in so far as you can determine that. I think it also wishes to preserve as much of the dignity and autonomy of the incapable person as is possible in the circumstances. Certainly that is a laudable object. To this end, however, the bill requires among other things that the substitute decision-maker involve the now incapable person in the decisions.
On the other hand, the bill sets standards which we interpret as trustee-like standards of an objective nature as part of the duty of care for the substitute care giver. Those two goals are not compatible except fortuitously in a given set of circumstances. We believe the objective, trustee-like standard of care is the right standard of care to impose. Mandating consultation, mandating regard to a guess at what the incompetent person would have chosen if competent we think puts the continuing attorney or guardian in an extremely difficult position.
Suppose something goes wrong. What do you think the changes are of raising a successful defence that, "This is what the incompetent person wanted me to do," or, "I thought that is what he would have done," if objectively the decision has lead to economic loss? We think all that would happen is the substitute care giver would be nailed. We think any professional adviser would tell him that. Therefore, to mandate a course of conduct which, if followed, will provide no defence if something goes wrong is the wrong thing for a Legislature to be doing.
There is one other point we would like to make. We object very strongly to the proposed total immunity from liability for acts done in good faith by the public guardian and trustee. That is not in Bill 108. It is buried in the omnibus bill, Bill 110, in section 22. This kind of crown immunity from the consequences of any breach of its duty to the public is a relic of a past age, and in our submission it should be left there. It certainly has no place in any scheme for the supervision of the property of persons who by definition are unable to look after their own affairs.
The Chair: Thank you. Are there any questions or comments?
Mr Poirier: I have lots. Judging by the thickness of your presentation and the short time we have, I will not be able to even start. Suffice it to say that I presume your document contains all your recommendations about what you would like to see kept or thrown out.
Mr Scane: Yes.
Mr Poirier: It is quite a voluminous thing. We could spend almost an entire day going through these point by point.
Mr Scane: It is the result of several weeks' work.
Mr Poirier: No doubt, to say the least, if not months. You make some very specific recommendations with regard to the changing of wording and whatever in here.
Mr Scane: Yes.
Mr Poirier: Fair enough. Whether a proxy should ignore medically unsound requests is quite a decision to split apart, is it not, because if you have a legal responsibility as proxy, I presume you have the moral responsibility of following what the request was, assuming the request was something legally and medically correct or acceptable by normal standards.
Mr Scane: Dona, I think this is your bailiwick.
Ms Campbell : The problem is even wider than that. It may be a request for an allocation of a scarce health resource that the proxy is simply unable to obtain within the time frame for the person. There is no flexibility for a proxy. They simply are held to the standard that they must comply with whatever wish is set out.
Mr Poirier: Did you address the compatibility of all these different bills together?
Ms Campbell: Yes.
Mr Poirier: You also addressed, from what I heard briefly, the cost of all this. Obviously you must feel that at the current level of funding for that type of program something would have to give, I presume, if I read between the lines.
Mr Scane: What I think we were both saying is that to do what this bill requires is going to require a substantial increase in staffing, how much I would not presume to say, of the present office of the public trustee. I think you would have to ask the present public trustee that. Presumably the assessment procedure and the supply of advocates -- we are getting a little away from the section I was addressing -- are all going to have to be paid procedures, or what would normally be paid procedures. All of them have a cost.
My comment was simply, do not try to do a half-baked job. In other words, do not try to impose all the obligations on the offices, for people are then necessarily going to be made to wait while an inadequately staffed government office tries to respond to the flood of requests you are going to generate. It seems to be defeating the object of protection you are trying to achieve.
Mr Poirier: Exactly. How much time do I have?
The Chair: About two more minutes.
Mr Poirier: I think that is a very important point between the principle of it all and the actual delivery of that said service. You seem to see a Grand Canyon shaping up between what you want to do and what you can do about it. I would like to ask the parliamentary assistant if he has a comment on that or if he will provide us with a reaction of the ministry or the government pertaining to that type of fear. I do not think I have seen it, but I would like to formally request the parliamentary assistant, in the time we will be studying this, to come forward and look at this and give us his comments on this.
Mr Malkowski: I will simply refer that to my staff person for comment.
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Mr Fram: Evaluation of costing has been going on and indeed substantial resources would be required to do it. I agree totally with Mr Scane and the Canadian Bar Association that to impose the legislation without the resources would be irresponsible.
Mr Poirier: Will the government come forward with a document that will propose implementation as to how much, when and where pertaining to this, assuming that this all goes forward? Will the government formally respond soon on this or what?
Mr Malkowski: I would like to refer it to David Winninger.
Mr Winninger: That is certainly a legitimate question to ask. I imagine once the cost consequences of implementing the bill become known, information might then be shed, but at the present time, until this legislation is amended, if it needs to be amended, and the implications are explored before the committee, I do not think that information can be made known. I think it would be premature.
Mr Poirier: But can you ascertain that your government is working on that right now to try to draw up on a calculating machine a final estimated extra cost of this?
Mr Winninger: As far as the nuts and bolts are concerned, I would have to refer that matter to Mr Fram.
Mr Fram: Calculations in fact are going on in discussions.
Mr Poirier: What concerns me, with the nice principle of all this and with what is happening with the economic situation of the province and your government, is if when you press "total" on your calculating machine you realize, "Oh my God, we may have done this all for nothing." I hope not, but I would ask of you formally, as soon as you can to come forward and bring us an idea as to how this can be done. It is a hell of a noble principle. Tell us the theoretical application of this for all these people here today who expect this to be brought forward by your government, how much in the next fiscal year, the year afterwards, or exactly when and how much extra. Make sure that the fears of all these people, who expect this to come forward in the practical aspect, do not materialize.
Mr Winninger: I think those fears at this time might be premature, because all the functions of the public guardian and trustee's office will have to be budgeted for. As the members of the Canadian Bar Association are well aware, there already is an office of the public trustee and there already is an office of the official guardian. Some of those responsibilities may be blended, but the infrastructure is already there to a considerable extent.
Mr Sterling: I want to thank the Canadian Bar Association for putting together an excellent brief. Would you thank all the people who participated in putting it together? I realize a lot of people worked on it. I often wonder, would I go back and practise law if I ever left this place? I think I have found a fertile field to return to.
Mr Poirier: If you ever left this place.
Mr Winninger: We can arrange that.
Mr Sterling: I might say they both have tried in five elections and have not been successful.
I have been concerned very much with the first point raised in the first part of your brief, and that is the separation out of trying to deal with a number of different problems within one consent process. I have not read your brief in its entirety, of course, because I just received it, but have you tried to delineate where it would make more logical sense for the government to be more interventionist? Where should they back off in terms of the stringent requirements of the public trustee, the people who are dealing with the public trustee, and what is obviously going to be a gold mine for the legal profession in terms of advising the citizens of Ontario to deal with this very complicated process?
Ms Campbell: The submission deals on a section-by-section basis with those sections we feel are overkill. I might say it is a gold mine we do not want. But to truly address that particular issue, the separating out, I think you would require more input from the medical community itself. I think they would be very well versed to advise you as to the circumstances -- acute and terminal situations, for example. There are ad hoc procedures working now by which people communicate these things. I think perhaps some dialogue between the legal community and the medical community could come up with a good delineation of those circumstances where this is not required.
The Chair: Ms Campbell, Professor Scane and Mr Heighington, on behalf of the committee I would like to thank you for taking time out of your busy schedules to appear here today.
ADVOCACY CENTRE FOR THE ELDERLY
The Chair: I call forward our next presenter from the Advocacy Centre for the Elderly. While we have a short break, I would like to remind the committee members that we will be starting right on time and according to schedule no matter who is here. Because of the number of presenters we have, we have to stick to a pretty tight schedule.
I would like to welcome you here today. Could you please introduce yourself for the record and then proceed.
Ms Wahl: I am Judith Wahl from the Advocacy Centre for the Elderly, and with me is Saara Chetner, our institutional advocate. The Advocacy Centre for the Elderly is a legal aid clinic that acts on behalf of senior citizens aged 60 and over. Our primary jurisdiction for case work is within the greater Metropolitan Toronto area, and our work in law reform and public legal education is cross-provincial. We have been open since 1984 and our comments on the proposed legislation are based on our experience of our direct advocacy and legal work on behalf of senior citizens.
This is a submission on behalf of my board of directors. There is actually a clause-by-clause submission. It is not yet before you because my board has to approve it before it gets to you, but it should be here within the next two weeks, well before your committee finishes its work. What I have given out to you is really more of a summary to guide you through what I am going to be presenting today and to give you an idea of where the Advocacy Centre for the Elderly stands on these matters.
As a preliminary statement, I want to tell you that the Advocacy Centre for the Elderly is very supportive of the proposed legislation. This should not be surprising because we have been involved since 1984, sitting as a member of the Fram committee. I myself was our representative and a signatory to its report. Much of that material was taken back to our board and considered, and as a result it is not surprising we are supportive of the Substitute Decisions Act and Consent to Treatment Act. Although that specifically did not come out of the Fram committee, it originally formed part of those considerations.
What I have chosen to present to you today is really the framework, what our concerns are. You are going to hear many detailed briefs over the next period of time from many different opposing positions. I have seen many of those briefs. What we are concerned about communicating to you are the principles that we see as important in this legislation. Then I want to address some specific comments to the Advocacy Act, with which we have more concerns than the other legislation.
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We see the Substitute Decisions Act as the basic framework for the law in substitute decision-making, but we see all these acts as a kit or a system. Substitute decisions and consent to treatment are the framework for substitute decision-making and advocacy is the service that works within that framework, so they are interconnected. Our concern is that whatever legislation results, that is, whatever is proclaimed, all the pieces are remembered, that no one piece gets proclaimed without the other pieces, so you do not see advocacy without substitute decision-making or substitute decision-making without advocacy, because of the interconnection.
The Substitute Decisions Act establishes, in our opinion, who are the decision-makers. It confirms that in fact people who are capable are entitled to make decisions for themselves. This may seem a very simplistic point, but every day in our work this is a point we have to drive home to many service providers and families, and confirm to senior citizens, that they have the right to make decisions for themselves. Just because you are old does not mean you are not capable, but we live in a very agist society, so I am pleased this kind of confirmation is in the act. It is just the statement of a common law.
We are pleased to see there is a confirmation of a presumption of capacity, that people are capable unless there is evidence otherwise. We are pleased to see there are processes established by which persons, when capable, can choose who should be their substitute. The most frequent work we do at our clinic relates to mental incompetency or substitute decision-making. Many people seek assistance in preparing financial powers of attorney. They want the ability to do personal powers of attorney. We applaud the fact that this is in the proposed legislation.
We are also pleased these acts provide an effective process by which a person alleged incapable may challenge the allegations of incapacity. This is very important. This process to challenge must be more than just saying, "You have the right to challenge," which you can see under our present mental incompetency legislation. We have had cases where people have been alleged to be incapable and the process starts under that act. They are supposed to be served with the documents so they can challenge this allegation of incapacity. Yet that never happens because they are not served with the documents, even though the requirement of the act is that you must be served, or they do not understand the documents or they are frightened when they receive the documents. You think: How would you feel if you were served with documents alleging you were incapable? We feel the advocate is a very important element in providing the real due process, the real protection to challenge an allegation of incompetency.
We also are pleased with the provisions for emergency intervention of the public guardian and trustee if the person is allegedly incapable of managing property or is allegedly incapable of personal care and may suffer serious adverse effects, what I call the limited adult protection role for the public guardian and trustee.
Ontario has taken a deliberate step away from adult protection legislation to instead go the guardianship route and provide an advocacy service to avoid people becoming dependent on guardians unless they indeed are incapable. I think this is a great improvement over legislation you see in such provinces as Nova Scotia, which has taken a very interventionist type of adult protection legislation that is modelled after child welfare legislation. Adults are not children; they are adults. They have the right to be assumed to be competent and to receive the protection on their terms. We see the limited role of the public guardian and trustee to be that intervenor sufficient to provide the protection that is necessary, without getting into a whole adult welfare system.
In terms of the Consent to Treatment Act, we see this primarily as a codification of the common law. Quite frankly, we are at a bit of a loss to understand a lot of the criticisms of this act that have appeared in the papers or that we have heard stated. Much of this already is the law. Perhaps that is why it needs to be codified. People do not understand how it works. We frequently see health practitioners not following the procedures in terms of consent to treatment. Putting it into the act certainly has raised the issue with many health practitioners and made them think a great deal more about this. This also raises the issue of education for health practitioners. They do not understand the law now. If this goes through, they need the education to put it into effect more appropriately.
We are pleased that the Consent to Treatment Act clarifies who is the substitute decision-maker. Many of our clients are in this situation. In some cases they are competent to consent to treatment and have no way of challenging that determination effectively. This act would give them that process. For the people who need substitute decision-makers in respect of consent to treatment, this will set out the list so we will know who along the way will be that substitute. It also gives, again, the opportunity for somebody to do a personal power of attorney so that he can select who will be his substitute decision-maker.
We are pleased that the Advocacy Act is the development of a service to support the provisions in the Substitute Decisions Act and the Consent to Treatment Act and also gives the advocates a greater power to do things like systemic advocacy. We really believe in the development of an advocacy system. I am saying that right up front, even while I give you some criticisms of the Advocacy Act. That is why we created an institutional advocate in our office.
Saara Chetner fulfils this role in our office at this point. She is a lawyer. We do not necessarily see that it has to be a lawyer playing that role, but we are part of the legal aid system. That is why we decided to go with the lawyer model. But in her role of being an advocate we have seen the demand for this service. Saara can certainly attest to the number of calls that come into our office for assistance. She is involved with people who live in long-term care institutions and provides a great deal of advocacy service, and we can see the need for the development of a broader service. Certainly we are getting calls from all over Ontario for this role. She can obviously only service the greater Toronto area.
I emphasize that we see all these acts working together as a system. I will make the distinction we are making between the different acts. We see substitute decision-making as a protection system. This is the protection system that is being developed, rather than an adult welfare system in this province where the substitute decision-makers are decision-makers as opposed to the advocates. The advocates should not be decision-makers. They are there to assist people, to empower them, to help them exercise their rights, but we do not see the advocates as acting on behalf of people who are not capable of giving instruction. That is the role of a substitute decision-maker.
We see the advocates as having a limited role in the protection scheme. In effect, what would happen is that the advocates would play a multiple role under the act or could play a multiple role under the act. They are there to assist people to be as capable as possible, to empower them, to assist them in exercising their rights, to give them information so they can determine their options. They are also in a sense a watchdog on the substitute decision-makers. If a substitute decision-maker is not acting appropriately and is causing harm to a person who is incapable, I can see the advocate reporting that to the public guardian and trustee's office, because it is the role of the public guardian and trustee under the Substitute Decisions Act to be the main watchdog on the substitute decision-makers and to supervise them. The public guardian and trustee has very specific roles to sanction substitute decision-makers. But we do not see the advocates taking over that role of a decision-maker.
You will see from what I have given you that I have set out some specific concerns about the Substitute Decisions Act. One of our major concerns is the appropriate financial support to the public guardian and trustee's office if this act is going to work. We deal frequently with the present public trustee's office. Our greatest frustration is not what they do but that they are not staffed enough to do what they should be doing and could be doing. If they are going to take over the role of public guardian and trustee, which is a multiple role under this act, they need the appropriate staffing and funding to be able to do that. We are very concerned that we have not seen that support being given to the public trustee right now to plan for this legislation.
After any of these acts come through, we also want to highlight the fact that there needs to be a great deal of education. We have done probably about 50 public speaking engagements explaining what these acts mean. The reason we did that and chose to do that -- in some cases, on behalf of area directors from the Ministry of Community and Social Services -- was that we were very concerned with making sure members of the public understood what was in this legislation, so they could come before you if they wanted to comment on that act, so they would be aware of what was in it.
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Many people have said to us at these sessions that these acts are very complicated and that they do not understand them. They are actually less complicated than they appear on the surface, or that is what I would argue; it is a matter of explaining it in a way that is user-friendly. It is very important that when you are determining what happens with these acts you make sure there is provision to permit the appropriate education of the public and the practitioners, the service providers who would have to apply these acts.
Under the Substitute Decisions Act, we are concerned that there is no investigative power for the public guardian and trustee. You want the public guardian and trustee to play a certain role. In fact, at one point they are specifically given the duty to do this emergency protection, but no investigative powers are set out in the act; there are no powers of entry. That will need to be changed in the act if you want the public guardian and trustee to play that role.
In the Consent to Treatment Act, again we are concerned about the need for education. This is also based on our experience of doing a great deal of education for medical practitioners -- nurses and doctors -- who do not understand the present law on competency. This would have to be built into what is created to make sure people are aware of how this law would work.
The other specific concern we have about that act is the requirement for the advocate to visit if a health practitioner believes a person is not competent to provide consent to treatment. There should be the option of the person meeting with the advocate. I would love to be able to see the advocate meet every time with the person, but on a practical basis we do not see how this could be done. We are suggesting an amendment to ensure that the person is advised of his or her right to meet with an advocate and is given that opportunity to meet with the advocate if he or she so wishes. If he decides not to and in effect drops out of the picture and decides not to do anything, the procedure could continue and the person could turn to the substitute unless there was a challenge to the competency.
Last, just looking at the Advocacy Act, they said: "We're very supportive of the development of an advocacy system. We wouldn't have created the position of institutional advocate if we didn't believe strongly in the role of an advocate system." But the problem we see with this act is that we are really unable to determine what the advocacy system will look like. This act sets up the Advocacy Commission, which is then given the authority to create the advocacy system, and the rest of the act deals with some specific powers of the advocates, but it is not clear from this act how the advocacy system would look or how it would operate.
When I have done presentations on this, I keep talking about the fact that the system could be of tremendous value, that it could be on the side of the angels, but it could also be on the side of the devil. Advocacy is a very powerful position. If there is anything I have learned since I have been at the Advocacy Centre for the Elderly since 1984, it is that the role of the advocate can be a very powerful position. It is just that we are not exactly sure what this system would be. Would it be on the good side or the bad side? We are saying the potential really is of particular concern if the commission provides authority to advocates to act without the instructions of vulnerable persons. We see advocates acting on the instructions of a person. If they are not acting with instructions, how would the system work?
Personal liability: Section 9 of the Advocacy Act protects advocates and commission members from any personal liability. We submit that advocates and commission members should be responsible for their actions. I am an advocate and I happen to be a lawyer advocate, but I certainly am accountable for what I do. I do not see why an advocate acting under this act should not be held liable for his or her actions. I do not think this is a great, dramatic statement. People should be responsible for what they do.
Rights of entry: We are concerned about the rights of entry of the advocate, particularly to a private home. This has been expressed to us by many senior citizens. They consider this to be too broad. We see that advocates should have a right of entry on consent, and then if there are reasonable and probable grounds to believe a person is within a premises who wishes to have access to an advocate, the advocate, if not getting entry, should be required to get a warrant for the entry. It is accounting for the fact that they are getting access to a private home.
Access to records: We see it as positive that the advocates have fairly broad access. We would actually encourage the government to include this right of access to records for everyone so that everybody could see their own health records. Beyond that, we are concerned with the commission being able to give authority to an advocate to see records. We submit that the advocate should not have the right of access to records with the commission's permission unless an individual gives his consent. It is really focusing on the individual and the control of an individual over his own records.
I know some concern has been expressed that unless advocates get broader access to records, they will not be able to do systemic advocacy. I think there are a lot of things to do systemic advocacy about without worrying about getting that access to records. I do not think that is necessary. It is too much of an intervention, an intrusion into people's rights over their own information about themselves.
Training and qualification of advocates: It is being left to the commission to develop qualifications and educational standards for the advocates. We submit this should be right in the act. It should not be left to the commission. It should be said up front. This would give a much better flavour of what the advocacy system would look like.
Non-instructed advocacy: The commission is being given the power under clause 36(d) to determine how advocacy services are to be provided to persons who are mentally incapable. We submit this is an inappropriate role for an advocate. It puts them in a conflict position because then they become decision-makers. I bring you back to our basic distinction: We see substitute decision-making as the protection scheme and advocacy as an advocacy scheme. If advocates become decision-makers they are going to be in conflict and might not be able to act appropriately for the very people they are trying to service.
The availability of advocates: We are concerned that there will not be sufficient advocates, either paid or volunteer, to meet all the needs under these acts. This is not a reason for trashing this act. We say again to you: We want the advocacy system developed. We want to make sure there is going to be sufficient provision and support for this system. To tell you the truth, I am more worried about an inadequately staffed advocacy system, an inadequately staffed public guardian and trustee than anything else, because it creates the effect that something is being done. It makes it look like something is being done, but then when people need the services, they are not there. It has to be properly staffed to work well and to permit the advocates to perform all the roles they have under the three acts.
Last, the advocate's relationship with substitute decision-makers: Many people have expressed to us concerns about how the advocates will interact with their families. We see no conflict with the advocate acting on behalf of a substitute decision-maker as long as the substitute decision-maker is not in conflict with the person who is incapable. The advocates could in effect provide very effective assistance to families who are themselves providing services to their relatives and acting as advocates for their relatives. These advocates, we assume, are going to have a knowledge base. They are going to be trained. They are going to have a skill which they certainly could use to pass on to families so that they could be more effective advocates.
Our vision of the advocacy scheme includes advocates assisting and helping substitute decision-makers where appropriate. I draw the comparison to our advocate. We act primarily for senior citizens who are capable of giving instructions on a particular issue. Notice I did not say mentally competent because competency relates to the specific task at hand. The advocate can take instructions if the person is competent to give instructions on that particular problem, so the person may have been declared incompetent for some other purpose but still be competent to instruct the advocate. When the person is not capable of giving instructions to a limited degree, our advocate takes instructions from substitute decision-makers, families and friends who have the authority to act as a substitute, where it is supportive of the person who is incapable and is in need of assistance.
If you have any questions, I will try to address them.
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Mr Curling: So many questions are raised, but I will focus on maybe two, considering the short time we have. As I get to understand these three bills, I get the feeling of a Big Brother syndrome: Big Brother is watching you. You use the line, "The role of the advocate is a very powerful role." I know we start from the base that we are all honourable people, but somehow as soon as one takes over another individual's life -- sometimes we get away with it. We hope that they will treat our lives fairly. I am very worried about how far we go, as you said, as an advocate, because we can be extremely detrimental to the person's direction of life afterwards.
I want to focus on the education part. On both bills you talk about the education of the public and professionals in the sense that everyone understands the scheme. You said it is not complex. I find these things are actually rather complex. I raised to the government presenters earlier that we have a high rate of functional illiteracy in our province. Institutions have a high rate of illiteracy too. For people to understand that and to understand this bill and the way it is presented or whatever brochure they send about, how do you see the government addressing that concern of carrying that information or educating those people within those institutions?
Ms Wahl: I can see this being done in a multiple way. This is an off the top of my head idea, but I can think of what we do already in legal clinics. We prepare brochures which are done at a very simple reading level to try to have as many people as possible access that kind of information in writing. Some of this information is also put into Braille. Some of it is put on tape to help people understand, if they cannot read. You can use a variety of vehicles.
Some of the clinics use videos. I can think of Justice for Children which has done videos on pretty complex legislation, the Young Offenders Act, to explain rights to children and to young adults. You can use all the different forms of media, in effect, to explain this kind of legislation. It is essential that education be done. The acts are complex -- any act is complex -- but I think there are ways around it. There are ways of communicating it. How do we communicate the tax act to people?
Mr Curling: We do not.
Ms Wahl: We can do a much better job at this.
Mr Curling: It leads to the question my colleague raised earlier about the cost. As we go along, we ask the government to carry a calculator with it. You spoke a minute ago. They were saying to us it is going to cost us a lot to reach all those people with different strategies and different approaches. It will cost money. We hope we do not raise the expectation of people that when this bill is ready for them, they can understand it.
There is one other point I want to raise, though, freedom of information and access to information. I can tell you this: Since the freedom of information bill came in, I have even greater difficulty getting to any information. It seems to me it is more difficult to get to it.
Mr J. Wilson: That is because you are in opposition now.
Mr Curling: Is that it? Do you see that access to people's information in that way would be much easier or do you find that it is quite an intrusion?
Ms Wahl: I am not sure how to respond to that because I have to admit I do not know enough about the access to information act, so I am not sure. I have not looked at that and how it compares to this. I want to make one comment, though, about the cost.
Yes, there is a cost in terms of the education but you also have to look at some of the existing moneys. For example, if this legislation goes through I can assure you that our clinic would end up doing educationals to senior citizens and service providers to seniors on these acts. You already fund us. The Attorney General's office funds us through the Ontario legal aid plan to do that work. It is an existing expenditure. It is not a new expenditure. It is the same with Community Legal Education Ontario. That clinic exists only to provide public legal information, so I suspect this would form part of their regular budget.
Mr J. Wilson: I think you have taken a very commonsense approach to the legislation. On page 8 it seems you have a concern about the best use of limited resources when you suggest that it is not necessary in all cases when a person is deemed incompetent to have an advocate on the scene, that perhaps just notifying the incompetent person of the right and opportunity to meet with an advocate is sufficient. Did you have in mind cases where acute care is required, for instance, and it would not necessarily be the best thing to have the advocate and may be a waste of resources to have the advocate intervene?
Ms Wahl: It depends how you see the advocate. I see the advocate under the Consent to Treatment Act purely as a rights adviser. These acts are set up so that every time you are going to lose your right to decision-making you get an opportunity to challenge that. To put into true effect the ability to challenge is the role of the advocate, to make sure you are aware of your right to challenge. I am trying to think of an example in acute care where this might arise. A person is in hospital. The physician does not believe that person is competent to give consent to treatment. Then he would be advised that the physician is going to look for a substitute. He has an opportunity to see the advocate if he wants to challenge or wants more information.
Mr J. Wilson: In that case, who does the advising, the physician?
Ms Wahl: Under this system the physician is going to advise him of the opportunity. I guess I am putting some trust in that physician to make sure that is truly communicated. The problem is that we cannot see a way around this to ensure that, to always get another party to come in. We have to rely to some degree on the physicians, dentists or nurses, on whoever is going to provide the treatment, to make sure the person is aware of the opportunity and to make it a true opportunity. It is not just, "I told you you have to have an advocate," and then they start to treat. They give them that real chance to make sure it is truly communicated. I do not see another practical way of doing it.
Mr Sterling: Do you see a requirement that the physician give the vulnerable person a written notice as well as talking about the treatment? Do you see that as being useful?
Ms Wahl: I do see it as being useful because I think it emphasizes the fact that they have this right. Some people may consider this overkill but it may be the only opportunity the person has. I can give you an example of one of our own cases. We had a woman who was determined to be incapable and in fact she was deaf. She was living in a chronic-care hospital and a procedure was started to declare her mentally incapable. It was her friend who picked this up and met with us. We met with this woman and provided her with the assistance she needed to get the proper assessment done and to give her an opportunity to challenge.
Mr Sterling: You mentioned some problem with the Advocacy Act and I was interested in your remarks on that. Part of the problem I find is that this idea they have, the right to act or make decisions, is a little frightening in terms of who these people are and what guidelines they are operating under. There are no guidelines specified. Do you believe that under the Advocacy Act there should be a mechanism whereby vulnerable adults would have the opportunity to complain about an advocate?
Ms Wahl: I think it would be necessary to be able to do that. I will draw a comparison with our legal clinic. Any client has the opportunity to complain about any of the services we deliver as lawyers or advocates, by means of an internal complaint mechanism we have. My staff are instructed that if the client wants to complain, there is a whole process that can be followed. We want to be sure people get the appropriate service. As a parallel to the advocacy system, people should be able to complain about their advocates and should be able to get to the commission so the commission can sanction the advocates if necessary. The advocates must be responsible for the work they are doing as advocates.
Mr Sterling: So you think they should be open to criticism and review for their actions.
Ms Wahl: Sure. I am not sure whether you need to put the complaint mechanism in the act, but certainly that is something that should be part and parcel of an advocacy system.
Mr Sterling: My concern is advocates who venture out on their own. It is very difficult to get rid of people who may or may not be doing what is in the best interests of the patient. If it can be proved that advocates are acting on their own motivations with vulnerable people, I think they should be dismissed.
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Ms Wahl: I agree with what you are saying, but the one I am going to comment on is that the advocate should not be acting in the best interests of somebody; he should be taking instructions from that person. They take instructions. Others may not think those instructions are appropriate, but they are taking instructions and expressing what that person wants expressed. It is what I do as an advocate. I offer options to a person. I help them select between a series of options. I give them advice, but I am not working in the best interests of my clients. Our advocate does not work in the best interests of the clients in that sense. We act on instructions.
Mr Sterling: Yes, you are correct.
Mr Poirier: Just very rapidly to follow up on that, yes, you take instructions, but after giving advice, so the advocate could be found not to act. Norm was worried if they did not act properly, but what if they did not act? What if they did not offer all those adequate types of information, the complete gamut of possible options for them to instruct you afterwards? That is also a possibility that could happen.
Ms Wahl: Sure, but that can happen with anybody who is giving advice to another person.
Mr Poirier: Of course.
Ms Wahl: That is why you have to structure the advocacy system appropriately so the advocates are accountable, are appropriately trained and have proper supervision so they are acting as effective advocates, not decision-makers.
The Chair: Ms Wahl and Ms Chetner, on behalf of the committee I would like to thank you for taking the time out to give your presentation to the committee.
COLLEGE OF PHYSICIANS AND SURGEONS OF ONTARIO
The Chair: Our next presenters will be from the College of Physicians and Surgeons of Ontario. For the information of the committee, it would appear that there are some people scheduled for 45 minutes. There is a 15-minute block set in the schedule to catch up for late starting or people who overrun.
Good afternoon. I would like to welcome you this afternoon. Could you please identify yourself for the record and then proceed.
Dr Morrison: Thank you for providing us with the opportunity to address you. I am George Morrison, president of the college council. With me today are the vice-president, Rachel Edney; the senior public member of the council, Bala Nambiar, and the registrar of the council, Michael Dixon.
In order to allow time for questions, we will focus primarily on Bill 109, the Consent to Treatment Act. We will provide the committee with a more detailed clause-by-clause analysis at a later date.
At the outset, I want to express concern about the consultation process on all four bills. With legislation as significant and far-reaching as this, it is not surprising that considerable controversy occurred. The Minister of Health has appropriately acknowledged the criticism and tried to clarify the government's intentions regarding some sections. In others under dispute, she hoped common sense would prevail in applying the legislation, but common sense cannot apply in the absence of clear legislative direction, and unfortunately no clearer wording has been produced to clarify the government's intentions or to guide the input of interested parties at these hearings. Compounding our frustration is the fact that the government has apparently drafted some amendments but declines to make them available at this time.
This legislation is attempting to achieve an important balance between health care providers and patients, between the consumer's right to choose and the practitioner's ability to provide quality care. The task is difficult because the viewpoints are far from unanimous, as these hearings will demonstrate, but much more could have been accomplished if all the participants had a better understanding of the government's developing positions.
Be that as it may, we will comment on the only available and concrete evidence of the government's intention, Bill 109 as currently drafted.
We have many specific concerns, but today we propose to highlight the following:
1. This bill's requirement for the intervention of an advocate in all cases where a substitute decision-maker is needed will inevitably delay both diagnosis and support for the patient.
2. Delays in obtaining consent should not compromise basic medical care.
3. This bill cannot be effectively enforced unless it establishes rules which are workable and understandable for patients, their families and practitioners.
Last December Ms Lankin said that the goal of this bill was to establish for all Ontarians the "right to be informed, the right to make their own health care decisions and if mentally incapable, the right to have someone make decisions on their behalf." These are fundamental principles of health care which we support. As a professional regulatory body, the college's legislated mandate is to protect the public interest.
In our instructions to physicians regarding informed consent, we state: "The patient has the right to accept or reject any investigative procedure or treatment offered.... This right can only be exercised meaningfully if the patient has been given a fair explanation of what is proposed to be done, and what the potential benefits and risks are."
It is worth nothing that this standard is supported by common law. The government has concluded that this current system is flawed and that steps to codify rules to protect and enhance patients' rights are necessary. But you cannot do this safely without recognizing that the patient's right to make an informed consent does not, and should not, supersede the patient's right to receive, at the very least, humane and supportive care until the uncertainties of consent have been sorted out. Some of the groups coming before you will disagree with this position. But Ms Lankin is right: There must be a balance in the patient-practitioner relationship. Unfortunately we do not believe that Bill 109 in its current form has achieved this.
In fact, the very complex, confusing and virtually unworkable list of steps required in any case of doubtful capacity could actually place patients, especially those the government most wants to protect, in a position of significant risk. Dr Edney will explain further.
Dr Edney: I am a family physician in Mississauga, where I have practised for 10 years. Dr Morrison has said this bill puts patients at significant risk. I would like to explain why.
I could be on call in a community hospital's emergency room late Saturday night. Two young people bring in their friend for care. They have spent the evening drinking at the local pub. The patient, a 17-year-old woman, is flushed and sweating. There is a rash visible on her exposed skin. Although conscious, she appears to be somewhat delirious. I go through the possibilities: Is she intoxicated, does she have the flu or is she in the first stages of meningitis?
Under Bill 109, I must assess her capacity to consent to treatment first. I conclude she is incapable because of her mental state. I must now notify her in writing of my decision and notify an advocate. Her ability to understand this procedure is not relevant, nor is the fact that an advocate may not be readily available in this small community hospital on the weekend.
Without proper consent, I cannot begin treatment unless the patient is at risk of significant harm within 12 hours. But since the definition of treatment includes diagnosis, therapeutic or preventive activities, I am unable to examine her, take blood samples or do a lumbar puncture -- all necessary steps to determine if an emergency exists.
The advocate meets with the young woman and tells her she may challenge my conclusion. If she objects, then the advocate must help her apply to the Consent and Capacity Review Board for a ruling. I cannot begin treatment until the board has rendered a decision.
If the patient does not object or refuses to meet with the advocate, I am informed. I must then find an appropriate substitute decision-maker: a guardian, attorney, spouse, child, parent, sibling or other relative. If I am not able to locate any of these individuals within a reasonable time, I must notify the public guardian and trustee.
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If I do locate a substitute, I must ensure that this person is capable of making the decision and I must explain the principles that should guide the process. The substitute must state that he or she is qualified to decide according to the criteria laid out in the bill.
What is happening to my patient during this time? So far she has received no treatment, not even a diagnosis. If she is drunk, this process will certainly sober her up. But what if her condition is more serious? And how do I care for the other five patients who have come to the emergency department in the meantime?
I do not believe this is an exaggeration. This is what the legislation is saying. And as a health-care practitioner, I must follow that direction. The bill may be protecting this patient's right to consent, but it is seriously compromising her right to receive necessary medical care.
Basically the system as designed will not work, especially in a family practice setting. For example, I cannot judge a 15-year-old patient seeking birth control advice capable of consent without calling in the advocate. The legislation states that a person under 16 years of age is presumed incapable but that this assertion may be rebutted. In the ministry's original consultation paper, practitioners were clearly entitled to make that determination but this has not been clearly translated into Bill 109.
The minister said she did not want to prevent young teens from seeking care for birth control, sexually transmitted diseases or family problems. But young people who come to my office for this care are often uncertain and scared. Knowing that I must call in an unknown advocate to help them decide will be a very significant barrier.
Family members faced with the care of an elderly parent with Alzheimer's disease will no longer be able to consent for the care of that incapacitated parent until a government-appointed advocate can speak to the parent to acquaint her of her rights. Even if the family member is eventually considered the appropriate substitute decision-maker, she cannot consent to hospitalization if the parent objects.
A health-care practitioner can no longer assume that a spouse or family member who accompanies an incapacitated or underage person is entitled to consent for the patient without first finding out if anyone else with a higher authority than the companion has been appointed under the bill.
The concepts of advance directives and expressed wishes also present difficulties. We strongly support the concepts, but how does a practitioner determine in all circumstances, with any degree of certainty, whether a particular directive is the correct or valid one, before treatment can commence?
Let me give you another example. While on a business trip you suffer serious but treatable injuries in a car accident. You are unconscious when you arrive at the hospital and no family members can be located immediately. In your wallet, the nurse's aide finds a card stating that you are terminally ill and do not wish to be kept alive through extraordinary measures.
What do you want the practitioner to do? Assume this directive applies to all treatment and stand back? Call in the advocate? Or would you prefer that the practitioner be allowed to exercise reasonable doubts and treat you on the assumption that this only applies to your terminal illness?
Front-line health-care practitioners confront situations like this frequently. Any legislation governing consent in these circumstances must allow the system to err on the side of the patient, not the process.
Mr Nambiar: I was appointed to the council as a public member six years ago and as president of the organization of South Asian Canadians, I have gained considerable experience advocating for individual and community interests.
The minister has expressed interest in the college's views on providing specific penalties for contravention of section 4, the clause which prohibits treatment without proper consent.
In our experience as a regulatory body, we have found that patients are more at risk in situations where the expectations and rules are unclear or misunderstood, or where there is uncertainty as to which member of the health care team has the ultimate responsibility for patient care in a given situation.
Unfortunately this bill is an example of all these factors. The rules are confusing. All the onus for initiating those rules rests with an individual practitioner with no provision for assistance, delegation or a change in the primary care giver. In addition, the bill sets out arbitrary, inflexible and conflicting demands on practitioners with little thought as to how the health care worker is to proceed if the system is working to the detriment of the patient.
Let's take another look at Dr Edney's first example. She was confronted by a patient who may or may not need emergency care. She cannot make that determination because she cannot diagnose without consent. She is unable to obtain that consent because the patient is incapable and the advocate process must be followed. It is the college's job to issue explanatory directives to physicians on compliance with the law. How are we to advise them in this case? What are the government's intentions?
Dr Edney may suspect, but cannot confirm the patient's need for urgent care. How long must she wait until the advocate process is completed? Does she proceed without the advocate on the assumption that this is an emergency? If she does proceed and it turns out the woman is merely intoxicated, then she has broken this law and is subject to penalty. If she does not begin care and the woman dies, she is also in breach of her professional responsibilities. Or instead, does she pretend the woman is capable, to try and solve the dilemma?
The minister said she hopes common sense will prevail. We agree. But we cannot advise physicians to use common sense in direct contravention of specific legislation. We urge the committee members, especially in clause-by-clause debate, to be aware of this while amending these bills.
Let us look at a recent real life example. A physician in an emergency ward examines a woman in serious but treatable condition from a car accident. In her wallet is a card stating that the bearer is a Jehovah's Witness who would refuse a blood transfusion. It is signed, but it is undated and unwitnessed. No one else is immediately available to validate this advance directive. The physician is in doubt but chooses to err on the side of saving the patient's life. The woman recovers and successfully sues the doctor for battery. In your kit you will find a copy of the notice we sent to the profession in the wake of that decision.
This example illustrates several points. It demonstrates how the current common law works and highlights the need to clarify the rules, but it also shows the dilemma practitioners find themselves in on a frequent basis. There will always be a significant number of situations of legitimate but inevitable uncertainty. Until this legislation creates a system where practitioners can determine, with some degree of certainty, who wishes to refuse treatment and who does not, then rigorous enforcement provisions will not result in better patient care. Instead, it will create the medical equivalent of libel chill.
Physicians are prepared to accept limitations placed on treatment by capable, consenting patients or substitute decision-makers, but they should not be asked to function in situations where limitations on treatment, of potential harm to patients, occur because of flaws in the system. As a minimum, patients should expect that their options for care will be preserved until uncertainties about consent are sorted out.
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Dr Morrison: In closing, I would like to reiterate our belief that a patient's right to choose is a fundamental principle of health care. We support the government's efforts to define a better mechanism to protect and enhance this right, but the minister has also asked your committee to come forward with a "commonsense consensus." The advice should be well taken by all of us who are participating in this hearing, because if we cannot work together to discover that consensus point, it will not be the government or the practitioners or the institutions that will suffer; it will be the patients. We look forward to any questions you may have.
The Chair: I would just like to advise the committee that the clock is not working. We have about five minutes for each caucus.
Mr Poirier: It is as good at advice as Bill 109, I guess. Yes, I got consent ahead of time to have five minutes.
Dr Edney, as you were describing your first example, I was putting myself in your shoes. Being one of the members for Ottawa-Carleton, where we have an interesting situation with meningitis, it is very apropos and right up to par to use this as a very vivid example.
I am sure you have spent a lot of time with this, consulting among yourselves. We could spend a lot of time asking you questions about that, but at this point I would like to hear from the parliamentary assistant if the government or the different ministries or himself or somebody else will respond specifically to the fears that have been brought forward by the college here today, or at other times they have come forward. Could I get a response from the PA, please?
Mr Malkowski: I would like to refer this to Paul Wessenger, who is the PA to the Minister of Health.
Mr Wessenger: As far as the specifics are concerned, I think there are some misconceptions in the brief, particularly with respect to the question of age. I will deal with that first of all.
If a person under 16 does not demonstrate a wish to make the treatment decision, there is no assessment of capacity and the parent or other person who has custody of that person makes the treatment decision, but if a person under 16 demonstrates a wish to make a treatment decision, then the health practitioner makes the determination whether that person has the capacity, and if that person has the capacity, the health practitioner can proceed to treat. It is only in the case where the person under 16 demonstrates a wish to make a treatment decision and the practitioner determines the child is mentally incapable that you have to have the advocate come in. I think we needed that clarification.
With respect to the specific question concerning the meningitis situation --
Mr Poirier: Yes, especially that first case.
Mr Wessenger: -- I will probably ask counsel to refer to that. I think they would be more cognizant with respect to the matter of the interpretation of law and give a better answer to it legally than I would be able to do give.
Ms Bentivegna: It comes down to the fact that to act without consent, the practitioner has to be of the opinion that the person is incapable and that there is not time to find a substitute and that the patient before him will suffer serious bodily harm. Then the practitioner can proceed, but it is still up to the practitioner to make that determination, that he is dealing with a situation that will lead to serious bodily harm. The bill leaves it up to the practitioner, does not want to tie the practitioner's hands, in order to provide the patient with treatment if it is an emergency situation, but if it is not, then it sets out the process as to how that person's right to make the decision is taken away and how the substitute decision is made.
Mr Poirier: In everyday language, you are telling me that in the two examples brought forward in their brief they have nothing to worry about, because if they have a doubt or they cannot proceed the way the bill says, they are in their full right to proceed with emergency treatment as if they had consent or whatever. Is that what I am hearing from you?
Ms Bentivegna: What I am saying is that if that practitioner believes he has an emergency situation on his hands -- not what is now under common law as a threat to limb or vital organ or a threat to life; it is a broader definition -- then he can act. If diagnosis is needed because they believe it might be an emergency, then that would include that too.
Mr J. Wilson: But you have the cart before the horse. The point that needs to be answered is that diagnosis is considered part of the definition here. That is what needs to be cleared up.
Mr Poirier: That is right.
Mr Sterling: Why don't we just take it out?
Mr J. Wilson: The example was fairly clear. The diagnosis would have to be done to determine whether it is an emergency or not. The counsel has just said that. Why do we not clear up the definition and not have these debates every day?
Mr Poirier: Exactly. How would the doctor be able to defend herself or himself? If they say, "I felt there was an emergency situation," how could they say that if they did not make a diagnosis?
Ms Bentivegna: There is also the fact that there is different capacity needed for different things. There is very little capacity needed in order to agree to speak to someone or to give him information if you are able to. Now, someone may be so incapable that he cannot give that information, so again the practitioner would not have anything to go on. That would be difficult. It is a difficult situation. But there are different levels of capacity that may be needed for the different steps of what may happen.
Mr Poirier: Particularly to those two very specific and very real examples, what would you tell these doctors to do? What would you say they can do so they could go to bed that night and not have to worry about it tomorrow or the next day? What would you tell them?
Ms Bentivegna: The bill sets out that if the doctors believe they have acted in accordance with the bill -- if they had a belief it was an emergency and they acted accordingly -- then they are protected. In the case of, let's say, the 15-year-old who goes in for birth control, if they believe that young person is capable, then they can deal with that young person. There is no need to call in an advocate.
Mr Poirier: Including a blood transfusion for religious purposes?
Mr Bentivegna: With the blood transfusion, as the Malette v Shulman case stated, if there is an advance directive, even in an emergency situation that has to be respected. The bill states in section 23 that the practitioner has to have reasonable grounds to believe there is such an advance directive. Where practitioners are acting on a substitute's consent as to what the advance directive was, they have to rely on that substitute to have properly interpreted that advance directive and to be applying it. It would not be the practitioner who has the responsibility in that case where they are relying on substitute consent.
Mr Poirier: Would you react to that, please?
Dr Dixon: If I may, with respect to the issue of emergency care, not only is a practitioner in difficulty in that he or she cannot examine the patient because consent has not yet been granted, but the practitioner has to make a determination, not whether there is an emergency but whether "the person is likely to suffer serious bodily harm within 12 hours if the treatment is not administered." That is a very difficult call for any practitioner to make. Besides, the process may start before 12 hours, but the effects may not be visible and may not become manifest until some time later. This is quite a different definition and test than is currently in existence under the Public Hospitals Act.
Mr Wessenger: Could I just respond to that? I think it has been made quite clear by the minister that one of the items being considered for deletion from the legislation is the "within 12 hours." I think it has been indicated pretty clearly by the minister that this is an item that is likely to be cleared up.
Mr Poirier: You mean to tell me you are considering amendments?
Mr Wessenger: I am just saying it has been made very clear by the minister that she recognizes that as a valid --
Mr J. Wilson: What are we supposed to do, remember every wish of the minister? Why do you not put this stuff in writing so we do not have to debate this stuff over and over again?
Mr Wessenger: If I might point out, it was indicated by the minister in her statement to this committee. Read her statement that said the 12 hours should be deleted.
Mr J. Wilson: Bring it in as an amendment.
Mr Fletcher: Read Hansard. Do your homework.
Mr J. Wilson: Bring it in as an amendment like you normally would.
Mr Sterling: Could I ask the parliamentary assistant what the sense is of keeping in the definition of "treatment" under section 1 of Bill 109, the diagnostic part of it? Why is that included in the treatment section?
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Mr Wessenger: Obviously a diagnostic procedure can include a number of tests and a number of very intrusive steps that can be taken with respect to an individual. That is why it is included, the term "diagnosis." Diagnosis does not just mean looking at a person and making a guess as what his sickness is. It involves doing all the necessary steps, tests, etc. that are required to establish what the illness is that requires the treatment.
In the individual situation, as I think was indicated by counsel, it is the medical person's judgement as to the situation. If the medical person determines in the situation that there is a risk of meningitis, then the medical practitioner would be justified in taking whatever steps are necessary on an emergency basis to deal with that situation.
Mr Sterling: Are you suggesting that within diagnostic tests then, there could be some harm to the patient?
Mr Wessenger: It is not a question of harm to the patient. I think it is really a question of the patient having the right to determine what is appropriate treatment. Of course, we have the override of what in an emergency situation is appropriate treatment.
I would like to say also that I am quite confident the medical profession would use common sense in interpreting this legislation, just as they use common sense in interpreting the common-law situation. The fact is that this act is more or less a codification of the common law and in many cases allows for a process of providing treatment on a lesser standard perhaps than the common law would provide. It would provide ways of doing treatment which the common law does not provide. What we are attempting to do here is provide a more effective way of treating patients than the common-law situation.
Mr Sterling: I understand that we want to give a patient the right to refuse treatment, but we are dealing here with specific circumstances where somebody cannot answer for himself. I do not understand why it is wrong to give the medical practitioner the right to diagnose without consent? What is wrong with it? To diagnose, to determine: What is wrong with it?
Mr Wessenger: Perhaps I will refer this to legal counsel. I had better leave it to legal counsel because my comment would be that diagnosing by itself is not necessarily treatment, but there may be steps necessary to diagnose that would involve treatment.
Ms Bentivegna: The reason there is a broad definition of "treatment" to include "diagnosis" is that there may also be different types of diagnosis or tests that may be suggested, and a person may want to undergo some and not undergo others. That is always a person's choice.
Now, when one is dealing with an incapable person, that person may already have a guardian or may have been incapable -- there will not be a new finding of incapacity under the Consent to Treatment Act -- so then it will be the guardian who will be making the decisions once he or she gets the information as to what is needed and what the alternatives are. If this is the first time the incapable person comes up for medical service, this process will start then. But again the premise of the legislation is that you need someone to receive the information or what is being proposed, whether it is a diagnostic test or whether it is a treatment, and then that person can say on the incapable person's behalf, "Yes, that is fine," or "No," either they did not want it or do not feel it is in their best interests, if there are not advanced directives.
Mr Sterling: This goes to the amount of distrust that we are placing in our medical profession in this province. If you cannot give them this much trust, then what can you give them? It is absolutely amazing that a government in trying to protect its people will go to these lengths and distrust its professionals to this degree. I just find it abhorrent.
Mr J. Wilson: Along that line, perhaps I could have a frank comment from the College of Physicians and Surgeons. What is the common ground here? You mentioned in your brief that you do not feel the status quo is the way to go. You may agree with us that we feel this really shows a lack of trust in the traditional role of the physician, so where is the common ground? I know you are going to introduce amendments later, which is better than the government has done to date. Dr Dixon, do you have any general comments on behalf of the college?
Dr Dixon: I think with respect to the basic issue, we clearly have said that we support the basic right of a patient to consent or for someone to consent on the patient's behalf. We do not want to jeopardize the patient's options by introducing a system which in essence is possibly going to take away that right by simply allowing the patient's health situation to deteriorate while the consent process takes its course. Surely a practitioner should have the authority to undertake at least a non-invasive assessment of a patient to determine what the problem is so there can be some assessment of the urgency. If diagnosis is so inclusive that the patient cannot even be examined by the practitioner -- I can understand not wanting to authorize invasive diagnostic procedures which carry a risk, but surely a physical diagnosis of the patient and some pretty basic tests which might be undertaken in an emergency department to determine the urgency of the situation would not be unreasonable.
Mr Curling: Maybe the parliamentary assistant could clarify this. Earlier we asked if there were any amendments. I heard a remark that we would know if we had read the minister's statement to the committee where she emphasized that there are amendments coming. Earlier today they said there would be no amendments whatsoever until after the hearings. I just want to know.
The Chair: I believe Mr Wessenger said there would be clarifications on the 12-hour issue. He did not say there would be amendments, but clarifications.
Mr Curling: Which will come in the form of amendments?
The Chair: Possibly; possibly not.
Mr Curling: I just want to understand.
Mr Winninger: I frankly do not share the same concern the members of the opposition have with regard to section 22 because I would suggest that the reasonable test would have to apply here. In fact, the word "reasonably" appears in clause 22(1)(c). Are we not dealing with the same kind of situation we have any time a physician has to make a decision? Once we look back on that decision in hindsight, are we not in a situation where we demand the same standard of competence that a physician would be expected to exercise in light of a similar standard of competence that is demonstrated by the physician's peers?
Here we have a lead-in that says if the health practitioner is of the opinion; if that opinion is a reasonable one to take under the circumstances, I suggest that the kind of invasive diagnostic procedures you are concerned might not be available in this situation would not be necessary in the majority of cases. Perhaps you could comment on that.
Dr Morrison: The diagnosis in the particular case of meningitis is not an academic theory. If you are presented with a case of bacterial meningitis and it is more than an hour after the patient arrives in emergency, you may well have caused some deterioration in his chance of a successful recovery, so the particular case represents an area where diagnosis and an invasive procedure, a lumbar puncture, is desirable and essential.
As to a reasonable decision, Dr Dixon has already said that as we read the present legislation, we do not think we are entitled to go ahead and make that diagnosis. That is our interpretation. I would also respond to an earlier comment that in this legislation there may be some distrust of our professional integrity or professional responsibility. I would like to emphasize that we, and not only physicians but other health care workers, nurses and others, are patients' advocates as well, so we do have the patients' interests at heart. It probably should be considered as part of this legislation as well.
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Mr Wessenger: I would just like your confirmation: You would like to see some wording changes in section 22 of the act, the emergency provisions, is that correct? Is it fair to say you would be in agreement with deletion of the 12-hour time frame as one of those changes? If there are any other changes you would suggest, I would certainly --
Dr Dixon: That would be one change, but we certainly have to clarify the authority of a physician to assess a patient without consent in a situation where the condition of the patient is unknown. Physicians working in emergency departments are frequently confronted with patients they have never seen before, and if they do not have the authority to take an initial assessment of the patient, they cannot possibly determine whether the patient is an emergency or whether he needs any supportive care until the advocate and consent process has been fulfilled. Do you want patients to lie in emergency departments waiting for the advocate and for the substitute consent person to come when they are in pain, when they need fluids, when they need suction? All these things are precluded by this legislation.
Mr Wessenger: Again, I would like to refer you to the minister's comments that she has come to the conclusion that treatment necessary to alleviate severe pain should be permitted in the emergency treatment. Besides the 12-hour time frame she has also indicated that the legislation should be amended to extend the 72-hour time period where no substitute decision-maker is available. So those are three indications. I certainly would be interested specifically in hearing from you on any other specific recommendations you could make with respect to this section. I am just asking you. I realize you may not have --
Dr Dixon: Notwithstanding the legal counsel's comments with respect to section 10, subsection 10(7) makes reference to the fact that the section pertaining to the role of the advocate applies also "if the person is less than 16 years of age and has demonstrated a wish to give or refuse consent." Our legal advice is that in fact it does require an advocate to consult with any patient under 16 years of age who indicates a desire to consent on his own behalf and is deemed capable by the practitioner to be able to consent.
The Chair: Dr Morrison, Dr Edney, Mr Nambiar and Dr Dixon, I would like to thank you on behalf of the committee for appearing here today.
Mr Nambiar: May I make just one small comment, please? The new Regulated Health Professions Act is going to place greater onus on laypeople like myself to see how the legislation is followed. It may be all right for all these doctors, as they are now in the majority sitting on the complaints committee, to say that particular practitioner did what any ordinary doctor would do, but in the new legislation a little less than half will be laypeople, and they would have difficulty exercising judgement. If a case like this comes up, we will not look at things in hindsight. We will say, "Why did you do it when the legislation was very clear?" This is something you have to bear in mind.
ALZHEIMER SOCIETY FOR METROPOLITAN TORONTO
The Chair: Our next presenter will be from the Alzheimer Society for Metropolitan Toronto. Could you please introduce yourself for the record and then proceed.
Mr Ignatieff: My name is Andrew Ignatieff. I am a board member of the Alzheimer Society for Metropolitan Toronto and a member of our advocacy committee. I would like to lead off by introducing our society. We are the first community-based agency anywhere in the world to specifically address the problems of persons with Alzheimer's disease and related disorders. As health care professionals, but most particularly people with direct experience in family-centred care for persons with Alzheimer's disease, we work in several different ways within the context of the home and the community to provide support to the victims of Alzheimer's disease and their families.
These include a telephone counselling service for family members, care givers and concerned community residents about the symptoms, care and treatment of Alzheimer's disease and a unique and far-reaching resource centre, including books, periodicals, videos and films on Alzheimer's disease, its care and treatment. We also provide a number of information events and advocacy initiatives in support of persons with Alzheimer's disease in the community. I appreciate the opportunity to speak on behalf of the Metropolitan Toronto society because I know you will be hearing later on from the Ontario society.
I want to speak to you today from the viewpoint of a care giver. My mother, my grandmother and my great-grandmother all had Alzheimer's disease, so I am very familiar with the situation and believe that as a care giver I have something to offer this process.
What we do as an agency reflects the current government's commitment to the long-term care redirection in that we believe in promoting respect for vulnerable members of the community, support for care givers, maximizing opportunities for community-based care and appropriate delay in institutionalization.
What we would like to talk to you about today is specifically the three bills, Bill 74 on advocacy services for vulnerable persons, Bill 108 on substitute decision-making and Bill 109 on consent to treatment. While we are grateful for the implicit recognition of persons with Alzheimer's disease as vulnerable members of the community within the context of the current bills, we have some specific concerns about the impact of this far-reaching legislation on persons with Alzheimer's disease, their families, care givers and supporters in the community.
All three bills imply a level of state intervention in the care of vulnerable persons which we believe is incompatible with the stated principles of the long-term care redirection. As persons with experience who have worked with persons with Alzheimer's disease, we believe this care should remain the primary responsibility of the family, the care givers and the community-based support network and not require constant intervention by the state.
I do not think anybody can live in Ontario at the moment and not be aware of the situation of recession and fiscal restraint on the part of the government. Just looking through the legislation and doing some quick calculations, we became aware of the high cost the proposed program would imply. We think these resources could be much more effectively used to support the existing networks out in the community, rather than imposing a new level of bureaucracy on people who are already working on behalf of vulnerable people in the community.
In the area of the proposed Advocacy Commission, we would urge you to allow representatives of the Alzheimer society and other organizations that work on behalf of vulnerable persons to be members of the proposed Advocacy Commission. While we are enthusiastic about the recommendation that the majority of places be given to vulnerable persons and persons with disabilities, we believe there is a role for organizations such as ours to participate. We who have shared the experience of Alzheimer's disease have something to say in this decision-making process and we would like to be included.
As part of our preparation for this submission, the Alzheimer Society for Metropolitan Toronto underwent a process of education and learning and consultation. We consulted with lawyers, professionals and other people out in the community with shared interests, and we realized the complexity of this legislation. We have no lawyers and no professionals; we are care givers. We believe fundamentally in the importance of a broad-based education program related to the implications and the impact of this legislation on the day-to-day lives of vulnerable people, their care givers and supporters out in the community. We urge you that when the legislation is passed, instead of spending money on newspaper advertisements, pamphlets and brochures, you provide support to community-based agencies to support you in your education efforts.
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One of our concerns relates to the issue of universality of application of the proposed legislation. I come from a background of community social service. I have extensive experience in the empowerment of individuals and community groups. My concern about this legislation is that it is profoundly disempowering to families. It takes away their responsibility for their loved ones, their friends and care givers. Families are there, ready to do the work, to provide the support. They need advice; they need support. They do not need an adversarial relationship with the proposed advocates.
A particular area of concern relates to the question of intake into the advocate process. The proposed moment is when the vulnerable person seeks the support and advice of an outside person to come into the increasing situation of vulnerability he or she faces.
When I was reading this legislation and we were discussing it in the Alzheimer society, I looked back at my own experience and tried to place at what moment this would have happened to us. In the case of Alzheimer's disease, it is not a single factor. It is a combination of neurological, social and physical symptoms that take place all at the same time. At that point when my mother, in this case, would have sought the support of an advocate, she was feeling extremely vulnerable. She was subject to periods of extreme physical violence and verbal abuse, her judgement was severely impaired and her ability to comprehend the implications of her actions was severely reduced. I should also say that as her family members, our ability for judgement at that moment was also severely put to the test in our day-to-day relations with her and our ability to provide her with care.
Our concern with this intake procedure is that once initiated, it cannot be reversed. A judgement is made on a family, on an individual, at a time of particular vulnerability and difficulty.
We would really urge you to review the criteria for intake and we would recommend that advocates intervene in an Alzheimer's care relationship only if the following conditions exist: if the Alzheimer patient has no family care giver; if the Alzheimer patient indicates the wish for an advocate prior to the onset of significant symptoms of the disease; if the family care giver indicates the need for an advocate; if a third party in the family or community has reason to believe that problems exist in the Alzheimer care relationship requiring advocate intervention.
Our whole work in the Alzheimer Society for Metropolitan Toronto is based on the principle that the family care giver is the most qualified person to make decisions and take action in the care of the Alzheimer patient. That family care giver may require information, support, counselling and direction, but ultimately he is the only one who can, should and must make the difficult decisions.
All three bills before you emphasize government actions implying intervention in the decision-making process around care, treatment and property of vulnerable persons. By their very nature, these state interventions disempower the family care givers and tread on the tenuous bonds of commitment in the Alzheimer care relationship.
As someone intimately involved in an Alzheimer care relationship, I have serious concerns about the presence of an uninformed advocate hanging over my every thought, decision and action as I make my way through the complex web of relationships with my mother, my family, my friends and supporters, the nursing home, banking system, legal profession and municipal, provincial and federal government authorities who see to her situation.
I have serious concerns about the prevailing use of unknown professional advocates with sweeping powers, heavy demands on their time, unclear qualifications and little accountability. Anyone who has been through an Alzheimer's care relationship will have very clear understanding of accountability, having had to deal on a daily basis with doctors, nurses, public health authorities, nursing home operators, bank managers, lawyers, notaries, public trustee's office etc.
Who are these new advocates? What will their accountability be based on? What rights and responsibilities will remain for us, the family care givers in the Alzheimer's care relationship?
All three pieces of legislation relegate family members to a marginal role in the proposed arrangements for vulnerable persons. As examples, Bills 108 and 109 do not make notification of family a priority during the process of assessment of capacity of the vulnerable person. In the case of persons with Alzheimer's disease, this is especially remarkable, as the vulnerable person with significant cognitive impairment is notified before the family members most responsible for his or her direct care.
We therefore urge you to ensure that the proposed Advocacy Commission define, impose and implement very clear guidelines regarding the qualifications, training, supervision and lines of authority and accountability of the proposed advocates for the vulnerable members of our community.
Lastly, I would like to talk about the question of research. The Alzheimer Society of Metropolitan Toronto focuses its work on the family care relationship and we leave it to other levels of our organization to deal with the research question, but we have some concerns as people directly affected by this legislation.
We advocate very strongly on behalf of protection of people with Alzheimer's disease from unnecessary participation in intrusive research. However, we would be very concerned about any effort to impede research into this terrible disease, especially at this point, when research has led us so close to a solution, an understanding of this disease and possible treatment of it. Anything we do now is basically only palliative care. The research we have so close at hand puts us in the position of prevention of, if not a cure for Alzheimer's disease.
We would therefore urge you to consider those aspects of the proposed legislation which could inhibit and actually prohibit effective research into appropriate care and the eventual cure of Alzheimer's disease. Specifically, provincial courts should be empowered by the legislation to authorize guardians of persons with Alzheimer's disease to provide substitute consent for participation in non-intrusive research.
Mr Poirier: Last summer my father was diagnosed with Alzheimer's. I have been a care giver at times and I also know what it is like.
You claimed earlier on that the proposed legislation is "disempowering," if I remember the proper word you used, for the family. I know that we have to read rather quickly, and as we say in French, at a glance, sideways, as we are going through this. Some of the explanations that were given to us earlier claim otherwise from the bill. I almost put in brackets "of course," but then it is always sad to see, no matter who is in government, that a proposed bill is perceived very differently, and people come forward and are very concerned about a particular bill. No matter which bill, no matter who, people feel this way.
I wanted to know, have you had a response from the government pertaining to the specific fears that you and the Alzheimer society have brought forward?
Mr Ignatieff: No, we have not. The thing I should say about the question of disempowerment, having been through this experience now for five years actively involved in the care-giving relationship and 10 years since diagnosis of my mother, is that I believe very firmly that families should assume responsibility. We fight daily to encourage families to take on this responsibility. It has been a transfiguring experience of my life. It is a responsibility that you take on, and you have to be prepared to assume all aspects of that relationship. But it is an empowering relationship because it gives you the ability to do something in the face of a disease which denies you any ability to cope. I think that one of the ways you empower yourself is when you face a very difficult, if not impossible, situation and you find the best solution because you have known this person all of your life. You know all their history, a lot of their characteristics and the potential of this individual. You know your own potential and the potential of your family. Especially in these hard economic times, it is very important that families assume responsibility for their own kind and take action where possible.
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Mr Poirier: Including at a time where the decision may be made to put that person in a nursing home, for example. Even afterwards also, including the power of attorney type of power to decide for that person with Alzheimer's, right?
Mr Ignatieff: That is right.
Mr Poirier: I understood correctly?
Mr Ignatieff: That is one of the most difficult decisions you have to make. The problem when you enter into an Alzheimer care relationship is that you lose all sense of perspective and you do not realize how hard it will become in caring for the multiplicity of symptoms. Therefore, I think it is really important that the people who are going through this process make the decision based on knowledge and understanding of the situation and the resources that are available to them, and not have someone else make the decision for them.
Mr Poirier: You are genuinely afraid that the advocates will tread on the legislative power that family members legally have or should have, or morally should have, to take care of an Alzheimer member of the family.
Mr Ignatieff: I have been dealing for five years, Mr Poirier, with representatives of banks, with lawyers and with chartered accountants and at every single instance my judgement has been put to the test. It has been doubted by someone I have never met before, who says that he knows much better than I how to care for my mother.
When I see this legislation, I just see this as another opportunity for someone to intervene and take away my responsibility, and to do something I probably know how to do better than they do. The question I have is why this relationship cannot be one of support to my decision-making ability, as opposed to this adversarial relationship, where someone who has a very heavy case load will say, "Okay, I can give three minutes of my time to Mr Ignatieff's case today."
Mr Poirier: Sometimes I feel you are speaking on your personal behalf.
Mr Ignatieff: I am speaking on behalf of the Alzheimer Society for Metropolitan Toronto.
Mr Poirier: Are you aware if other Alzheimer societies have the same type of fear the one in Toronto has?
Mr Ignatieff: You will be hearing from the Ontario society later on. We have differences of opinion on this legislation. We are much more supportive of the legislation than they are.
Mr J. Wilson: If you are supportive, somebody is in trouble here.
Mr Ignatieff: That is right. But we believe there are elements of this legislation that are worthwhile keeping and that should be supported. I cannot speak on behalf of the other Alzheimer societies.
Mr Poirier: Fair enough. Will the government be responding to the specific points brought forward by the Alzheimer society?
Mr Wessenger: I have a question for Mr Ignatieff which I hope will clarify the situation. Thank you for your presentation. I have a certain perception about how this legislation is going to work. My perception is somewhat different than your perception. I will just give you my perception of how it would work and you tell me where I am wrong.
It would seem to me that Bill 108 in particular is of great advantage to people in the Alzheimer situation. First, it allows the patients while they are competent, by power of attorney, to specify what treatment they should have, and then once they become incompetent, have incapacity, that power of attorney can be validated. Second, we have a much more streamlined procedure with respect to guardianship under Bill 108 than we have under the committeeship situation.
To me -- tell me where I am wrong -- it would seem that once you have an Alzheimer patient who lacks capacity, either a validated power of attorney could come into effect or a guardian could be appointed. In that event, an advocate would have no role whatsoever. The advocate would be completely eliminated with respect to the whole question of the Alzheimer patient. As for the person appointed, I assume a member of the family would be the normal person who would have the first opportunity to be appointed as a guardian for the patient.
In light of that, I am unable to understand your concerns, because it would seem to me that this is going to be an advantage in dealing with the Alzheimer's patient. It allows the family member to be appointed guardian, it allows the family member to avoid the advocacy situation. Maybe you would clarify that for us.
Mr Ignatieff: Speaking from my own experience, a comparable situation happened when my family was asked to participate in a research project sponsored by Sunnybrook Medical Center in adequate care for people with Alzheimer's disease and the doctor visited us for the first time. During that interview my mother kept on pointing at my father and me and saying that she was being kept under lock and key in the house and that they were after all her possessions and that she felt threatened all the time. Although my father denied it and wept at the time, the doctor had no way of knowing whether this was true or not.
That is the question I have. When someone is brought in from the outside who is not familiar with all the situation and the Alzheimer's person is fully capable of cogent speech but not capable of cogent thought at times and proceeds to tell a story which is completely at variance with reality, my concern is that judgements are made by that external authority based on very incomplete information.
The other question I have is that in the case of my mother, at what point is the person diagnosed? At what point does that person call in an advocate? My mother would never have called in an advocate, although she felt threatened. She just simply would not have. It would not have occurred to her, and by the time we were seeking the support of outside people, she was no longer capable of making decisions.
It is not a disease where at one point you say, "Oh, this person has Alzheimer's disease." In fact, the only way for true diagnosis is through autopsy after death. So it is very difficult to say at what point the diagnosis is made and whether the person has had it for a long time before. It is, as I say, a sliding scale.
Mr Wessenger: Perhaps I could just follow that up, because what you are saying is that for an ordinary health practitioner you feel it is very difficult to make an assessment of capacity or incapacity with respect to the Alzheimer's patient in the early stages of the disease. Obviously it is very easy in the latter stages to do that. What about the position of a psychologist? Are they, in your opinion, able to properly assess the capacity or incapacity with respect to an Alzheimer's patient?
Mr Ignatieff: Just to give you an example, my mother is an artist and did all the planning in our house when I was growing up. So when she was being tested by the psychologist, the psychologist would appear and my mother would say: "Oh, you want me to draw the clock, don't you? Oh, you want me to draw the circle." She was able to do all that and was able to carry on a conversation although she already showed signs of severe impairment in other areas. It was not until they had a whole range of very sophisticated, neurological tests done on her that they could prove that she was severely impaired, because her training as an artist and as an accomplished woman was such that she could carry herself and fool the psychologists.
Mr Winninger: As Mr Wessenger said, let's say for the sake of argument that you held a power of attorney for your mother's care or that you were a court appointed guardian for your mother's care. Your approach seems to be premised on one of conflict. You may be totally self-sufficient in terms of providing care for your mother. There may, however, be other care givers for Alzheimer's victims who might rely on the kind of intervention an advocate can provide. There may be care givers who may benefit from that kind of support, community support if you will. This is the kind of situation where you need not be in conflict with an advocate but where the advocate can provide a supportive role. Then of course there are situations where there is no attorney named, where there is no court appointed guardian, and these are the kinds of vulnerable people who may benefit most from the role of the advocate.
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Mr Ignatieff: This is what I was trying to get at when I was addressing the question of universality. I recognize there are people in the community who do need the support of an advocate. I am just concerned that the starting point of the legislation is that everybody is in need of an advocate, and consequently that supports which exist for certain members of the community are not recognized and then supported and enhanced. That is my only response to that.
Mr Sterling: You echo many of my sentiments which were put forward this morning and my concern about the intrusion into the family and its responsibility for care of a person who is close to it. I agree with basically everything you have said. I asked the question this morning of ministry officials, "Is there anything in the acts which would allow a person to exclude an advocate?" I know that at the onset of Alzheimer's there are very lucid moments and that a person who is afflicted with this disease can quite competently give a power of attorney during those lucid moments. Do you think there would be enough protection for the Alzheimer's patient if you said that you were going to draw up a power of attorney dealing with personal care which would exclude an advocate in the future, but make the law subject to the fact that a physician or a health care provider could call in an advocate if he thought it was necessary, if there was a conflict in the interests of the patient and the family? Would that be adequate to meet your needs?
Mr Ignatieff: Care givers would welcome any support they could get at any time as long as it was seen as support of and assistance to orientation for resources and needs in the community rather than the advocate assuming responsibility for the family. It is just a way of channelling resources rather than replacing existing supports in the community and family.
Mr Sterling: In response to my question, the argument was put forward from the government side that it was necessary to have an advocate even if there was a power of attorney for personal care, that it is necessary for this government to intrude into the family situation in case the family is taking advantage of the incompetent person. That is their argument. I do not buy that this kind of situation arises when a person and a family have gone to the trouble of making a power of attorney, and I do not believe a physician would act to the detriment of a patient if he thought the family was trying to take advantage, notwithstanding the law.
What I am trying to do is say to the people of Ontario, "If you want to draw up a power of attorney and exclude an advocate, you have the right to do it." That is what I would like to be able to do and have my constituents be able to do. If the acceptability of that proposal to the government is subject only to the fact that a physician could call in an advocate, notwithstanding what the power of attorney does, maybe I would accept that as a compromise.
Mr Ignatieff: As I said in response to an earlier question, we are supportive of the legislation. I would be concerned about any amendment that would allow for the exclusion of an advocate, because I can see situations where an advocate would be necessary. I just think that guidelines should be established for appropriate use of the advocate in situations where advocates could be used effectively in support of the family and of the vulnerable person.
Mr Malkowski: This is just a brief comment. Our government's position is one where we recognize and protect the family's role. We are not trying to take away the rights or the role of the family. What we are concerned about is the vulnerable person. You have to see this as a form of empowerment of that vulnerable person. There have been stories and histories where families have not always provided the right kind of care, and there are people out there who do not have families. What do you do in that situation?
Mr Ignatieff: I completely agree, Mr Malkowski, that there are situations where families do not provide the support necessary, and in those cases I think there would be a need for advocates. I am just concerned about potential abuse. When things are codified and put into legislation they are given a power themselves that can be abused. That is my only concern.
The Chair: Mr Ignatieff, on behalf of this committee I would like to thank you for taking time out this afternoon and giving your presentation.
ONTARIO PSYCHIATRIC SURVIVORS' ALLIANCE
The Chair: Our next presenters are from the Ontario Psychiatric Survivors' Alliance. Please come forward. I would like to welcome you here. Could you please identify yourselves for the record and then proceed.
Mr Milne: My name is Terry Milne. I am with the Ontario Psychiatric Survivors' Alliance of Ottawa-Carleton. I have brought along two colleagues today. I will let them introduce themselves.
Mr Pritchard: I am Randy Pritchard. I am the assistant coordinator of the provincial Ontario Psychiatric Survivors' Alliance.
Ms Shimrat: I am Irit Shimrat. I am the coordinator of the Ontario Psychiatric Survivors' Alliance.
Mr Milne: I am going to spend a few minutes going over some of the discussions my group had on three of the bills, Bill 74, Bill 108 and Bill 109, on a couple of concerns we had with the legislation as a package and one or two concerns we had with the consultation process. Following that, I am going to get Irit to look at some of the specific concerns we have with the implementation of the advocacy provisions.
The starting point of our talks on this legislation was the fact that advocacy is to serve, in the words of the minister, as a cornerstone for the legislative package. Our primary concern is that as a package its meaning to our community will be determined by the efficacy of advocacy. In other words, in the absence of effective advocacy, we might not see the other parts of that package as that positive for our community.
One of the other concerns was that there is going to be an Advocacy Commission flow out of this legislation, and there is also going to be a competence review board. We had the question, and the question was raised to myself a number of times, about what consumer representation is going to be on that board and commission and whether we will have a voice in the decisions of that commission. It is something that is very important to us.
A third concern for the legislative package as a whole and especially for Bill 109 that I would like to raise later is that there seemed to be a lack of effective sanctions in some areas. That is something we would like to address and ask why there were not effective sanctions, especially in the case of practitioners who might not respect the wishes of consumers. Also our concern is that as many of the remedies as possible in all the legislation be kept away from the courts and be remedied through the board and commission. Our concern was that courts often cannot be accessed that well by people in our community.
I think it should be fairly obvious that we are quite happy, or certainly very pleased, with a lot of the provisions in the Advocacy Act. Two of the concerns we had are whether advocates would be paid advocates or volunteers. We feel quite strongly there should be a core of well-trained and reasonably paid advocates at the core of the advocacy process rather than just relying exclusively on volunteers, who may not provide an effective advocacy service. The other matter, of course, was training. Is there going to be funding to adequately train and support the advocacy service?
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A further concern with advocacy was whether we would be able to maintain the right of advocates to enter private residences. It became quite obvious to us early on that this was a fairly contentious issue. That is something we would really like to maintain, as a lot of people we represent are in private residences and we feel quite strongly that advocates should have access to private residences.
The final point on advocacy is that advocacy may not be terribly effective in the absence of adequate funding and public information and we wonder what commitment this government has to a public information campaign and to ongoing funding for advocacy. I think that is something Randy is going to address in a bit more detail.
Bill 108: There was a lot of ambivalence from our community around this, and we felt quite strongly. It is a fairly complex piece of legislation and we were not really sure how it would play out in the absence of implementation and court decisions.
A couple of concerns were raised in our discussions. The first was that there was a provision for family members to make decisions based on fairly limited contact with people who they basically did not see on an ongoing basis. In other words, if they had talked to them one or two times in the past year, that would be sufficient contact to make decisions on behalf of those people. A second was that we were quite concerned in terms of who defines "therapeutic" treatment for purposes of substitute decision-makers for personal care when they are consenting to treatment. It was quite strongly stipulated that it would be for therapeutic treatment and we were concerned how "therapeutic" would be defined and who would define what was therapeutic. It seemed to imply a role for practitioners that some of our people had a problem with.
Finally, in substitute decision-making for property matters, there is a provision for management plans to be made by the person making substitute property decisions and a copy of that plan is to be filed with an advocate and with the PGT, but there is no provision we can see for an ongoing reporting to the advocate and we wondered how effectively the advocate could monitor the substitute decision-maker for property in the absence of that reporting process.
With Bill 109, just a couple of points on it: One concern, and this is probably the strongest concern expressed in all our discussions, was the idea of implied consent talked about in Bill 109. Most of our members brought up that, especially in a hospital setting, implied consent can be something that has a very broad definition and essentially, in the absence of an explicit no to a practitioner, treatment might proceed when it would indeed be against the wishes of a patient.
Two other points were raised. The first is that we would like to see, as I mentioned at the outset, more consumersurvivor involvement in the competency review board. This competency review board's decisions are going to impact our community in quite a large way and we do not see any reason why we should not have some sort of representation on that board.
The final point I would like to make is on the consultation process itself. I wonder how effective a presentation here is in the absence of having some sort of say in the implementation of this act. I think from my point of view, just from reading through this, it becomes quite obvious that how this plays out for our community is going to be decided in a lot of ways after these acts are passed. I just wonder if there is a commitment by the government to involve our community and other communities in the implementation process or whether this and things like this will be our only input into this legislation.
With that, I am going to turn it over to Irit.
Ms Shimrat: I would like to thank the committee for the opportunity to present our views on these three pieces of proposed legislation. As survivors of Ontario's current mental health system, our members have a great stake in ensuring that the principles which guided the creation of this legislation are adhered to. We have suffered greatly at the hands of well-intentioned service providers and family members who have blindly accepted the medicalization of what, for many of us, are nothing more than serious social problems, such as overmedication, substandard or no housing, malnutrition and social isolation.
We have witnessed our people being forced to live on the fringe of society by a system geared to ensure our eternal dependence on it. We have had arbitrary limits placed upon our options and our potential and have routinely been coerced into agreeing to treatments that growing evidence suggests may be doing more harm than good. Perhaps more than any other population we looked forward with great hope to this legislation.
Upon our first reading of both the Consent to Treatment Act and the Substitute Decisions Act, we noticed areas that caused major concern for some of our members. We have attached an overview of the proposed legislation by one of our members, which spells out, using personal examples, the main areas of our concern.
Very briefly, our concern about the proposed consent legislation centres on two critical areas:
1. Consent may be expressed or implied, as Terry mentioned. Although we appreciate that implied consent is necessary in dealing with the unconscious victim of an auto accident, we feel that only expressed, written consent is appropriate for the administering of any psychiatric treatment. Given the potential serious and debilitating side-effects of psychiatric treatment, implied consent leaves the door wide open for the continued practice of gaining our consent through coercion or by omitting to give us all the facts.
2. Lack of enforcement provisions: The law is broken every day under Ontario's Mental Health Act in terms of informed consent and in many other ways. But at least under the OMHA we were afforded the potential remedy of suing our abusers for statutory breach of duty. Although this has never happened, to the best of our knowledge, we were in the process of developing just this type of litigation strategy, which we hoped would begin to force compliance with the Ontario Mental Health Act. If service providers routinely ignored the law with potential penalties in place, what do you imagine will be the situation with no enforcement provisions?
In both these instances the drafters of this legislation have taken a giant step backwards in terms of support for fundamental civil and human rights.
As for the substitute decision-making legislation, it appears to be more of the same. We can still be ruled incompetent to consent to treatment simply by virtue of refusing to accept neuroleptic medications, also known as anti-psychotics, phenothiazines or major tranquillizers, even though the Ontario Court of Appeal recently ruled in the Ried-Gallagher case that it is unconstitutional to force-treat an involuntary patient with neuroleptics due to the potential for extremely dangerous and indeed life-threatening side-effects.
As nervous as we were about these two pieces of legislation, we were prepared to offer qualified support in order to realize the passage of the Advocacy Act. The Advocacy Commission was to be made up largely of representatives of community groups that have fought tirelessly for the rights of vulnerable adults. The commission was to develop guidelines and training criteria for advocates and commence hiring. We depended heavily on this process working in order to ensure we would never have to face another Cedar Glen, the psychiatric boarding house in which resident, Joseph Kendall, died as a result of a beating by the owner.
We were alarmed to hear several weeks ago that the adult protective service workers program was being transferred from the Ministry of Community and Social Services to the Office for Disability Issues under the Minister of Citizenship. It is our understanding that the 20% of the APSW program that currently comes under the heading of advocacy is to be placed under the Advocacy Commission, with its annual budget of $2 million coming out of the Advocacy Commission budget. On top of this, we see the psychiatric patient advocate office with its entire annual budget of $4 million being transferred to the commission.
We support the transfer of both of these programs from their current host ministries in order to finally allow them to do their jobs, but we cannot support the notion of having a large portion of what will be our advocate system handed to us without our input as a fait accompli. This is in direct conflict with the guiding principles we had counted on to save vulnerable adults from continued abuse under this new, flawed legislation. We do not forget that it was an APSW who had responsibility for keeping an eye on events at Cedar Glen prior to the death of Joseph Kendall.
We most strongly urge you to get back to the reasons why this legislation was necessary in the first place -- the massive, chronic abuse of vulnerable adults in Ontario -- and not allow the emasculation of this cornerstone piece of the three bills. Vulnerable adults' quality of life and possibly our very lives depend upon it.
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Mr Curling: I really welcome this presentation. As a matter of fact, I think all three bills will address the issue of vulnerable adults in our society. If there is any one group that I would say has been abused, mostly it would be the psychiatric patients whose responsibilities and roles are taken over by other people.
You raise a concern too in saying the rules that are laid down to determine implied consent leave that door wide open for more abuse and could continue to lead to abuses. Do you think the rules government should lay down under this bill should be consistent right across, or that in each community group that needs that kind of protection they could be spelled out? Your group, you had said, needs more stringent rules than the Alzheimer's group or what have you. Do you feel a common rule should be spelled out?
Mr Pritchard: I think there has to be a common set of circumstances and criteria straight across the entire system. Listening to the gentleman presenting just before us, I can appreciate that his mother may have caused some embarrassment by the statements she was making. But I would suggest that for every case of a person like his mother, there is an individual who is lodging that kind of complaint where it it valid and where it is real. I do not think we can afford to say that for certain segments of the vulnerable population these rules will apply to it and this segment won't. It has to be across the board or you are going to have this patchwork system with countless thousands falling through the cracks.
Mr Curling: So even though the law might be too severe in one instance, you feel it would still be helpful.
Mr Pritchard: Absolutely. The extreme cases of abuse that we witness in our community I certainly think exist in all the other subcommunities of those classed as vulnerable adults.
Mr Curling: I have another question I would like you to comment on. I think we have reached in this country and this province a reality of cost and money these days. Sometimes we have social needs that are to be addressed and some of us are scared to even approach them lest we may be seen as less humane in our concern for mankind. My concern, though, is that sometimes we are so benevolent in our approach that we make promises and cannot follow though. I think it is more severe for those in need that it is not forthcoming after those promises are made. The cost of this program can be quite enormous, as we hear what advocates should be paid, and the education is very important. I believe in all that type of thing. But do you feel any government at all making these promises can come through with the kind of funds that are necessary to make this effective?
Mr Pritchard: Absolutely. I think that if you do this properly and if you fund this properly, the cost savings this government and the taxpayers of this province are going to realize will be enormous. I would like to give you an example.
We know that if we are talking about the provincial hospital system, the minimum cost per day per bed is $340. We see that cost escalate to over $700 in some of our private psychiatric hospitals, per day per patient. We have been suggesting that a reallocation is long overdue. We see the kind of effective examples like the Gerstein Crisis Centre here in Toronto, which for one third of the cost provides the same kind of crisis intervention service with a far better end result, and you do it for a third of the cost. By employing the advocates and making sure they are adequately funded, you are actually talking about a minuscule portion of what is currently spent on psychiatric hospital beds. The cost savings would be enormous and would more than adequately fund this program and return a great number of dollars to the Treasury.
Mr Curling: The previous presenter also said that what could be helpful is if some of that money could be transferred to some of the supportive part of the family, and maybe the cost would be less, as a matter of fact, rather than concentrated in a large bureaucracy, large committees and processing. Do you think that kind of distribution of funds would emphasize the importance of the support system of the family, because you empower the family and give it that kind of responsibility? Do you think those points are well taken and that funds should be directed that way too?
Mr Pritchard: Absolutely. We have always maintained and always supported that funds have to be available in any reallocation that would allow respite care for family primary care givers. It is an enormous burden on anyone. We have experienced ourselves, when we offer support to each other when we are not doing well, the toll that takes on us personally. If we diverted 10% of the cost of a hospital bed to the wellbeing of that family in terms of additional resources for recreational purposes, whatever, this would be money well spent.
Mr Curling: It is difficult to ask you this, because I do not think the government even tried to answer it, but what total amount of funds would be available to make the system work? I do not want to put you on the spot because I could not answer that question.
Mr Pritchard: I do not think it is a question of putting us on the spot. We know that the current budgets of 10 provincial psychiatric hospitals is $800 million annually. We are saying, just to be a little outrageous, close down the 10 hospitals tomorrow morning, take 10% of that, $80 million, and put it into the community. Allow us to rent houses that we could use as drop-ins for the people who are currently warehoused in psychiatric institutions. Allow us to set up the kinds of mutual support, self-help types of things.
We can do this really cost-effectively. We are throwing away a ton of money. I am not going to put that on the current government. This is certainly an historical problem. But if we are looking at diminished resources here, we had better look at spending it more wisely. Let us get rid of the things that have historically been proven not to work. Let us talk to the very people who are receiving the services and if they are saying, "Hey, this doesn't work," then do not fund it.
Ms Shimrat: Our funders have been doing a study on the efficacy of some OPSA programs in terms of keeping people out of hospital and lessening the use of psychiatrists and of distress lines. We have already had enormous improvements in people's lives with the small amount of time, money and effort that has gone into this so far, so we have a really strong precedent for saying this is going to work.
Mr Curling: Having experienced the impact on the deinstitutionalized psychiatric outpatients, not setting up a proper receiving end actually made it worse, as you know and are quite aware. At the initial launching of a program like that, sometimes it costs twice as much to launch while you downsize, close the hospitals and open up smaller areas. I am just pointing that out to you. I am not in disagreement with you that maybe smaller institutions or communities can give better treatment, but I am saying the cost is enormous and the reality hits home at that time.
Mr Pritchard: I think that traditional community-based services have been so top-heavy in administrative costs that if we were to move along that line, yes, we are talking about an enormous cost. We are not proposing anything like that. We are proposing very simple answers here.
One of the things that has become clear to us in our travels around the province and meeting with our folks in some 50-odd communities is that we keep hearing the same issues. The issues are, "I live in a crappy place," or: "I live in no place at all. I eat out of garbage cans because I don't have money to buy groceries. My nights and my weekends, there's no one around and I wander the streets getting chased out of coffee shops. Take in a movie? Oh, it'll never happen."
These are our issues. These are the things we are saying are at the root of what the medical profession chooses to call mental illness. It seems to be recognized in every community outside of North America. We have a World Health Organization document that talks about the underlying causes of what we call mental illness as being environmental factors. People need decent lifestyles.
It is far more cost-effective to divert money away from a system that only perpetuates people's dependence and keeps them a perpetual drain on the economy and shift that focus into the community where people can start to gain back some of the self-esteem that has been stolen from them, where people can start to dream again that maybe life can be better than this, where with the support of our peers we can start to re-enter the communities and become viable contributing members and taxpayers. Instead of being a drain on the system, we could be contributors to the system and everyone wins.
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Mr J. Wilson: Thank you for the presentation. You talk about cost savings. Do you want to take another minute and explain something to me? I assume you are saying that with advocates in place there would be fewer admissions to psychiatric hospitals, so you would have cost savings there. But in terms of the issues you just outlined as the root causes of mental illness, I am having a little problem figuring out how a $30-million bureaucracy of advocates is going to solve those issues. I assume you are saying they will be a louder voice out there speaking out and making people aware of the root causes of mental illness.
Mr Pritchard: I think not
Mr J. Wilson: Maybe I am missing the point.
Ms Shimrat: Advocates will be in a position, we hope, to advocate for what people really need. If the doctor is out there saying, "What this person needs is more drugs, more hospitalization," and if the person has an advocate to say, "No, what this person needs is housing," then you get at the root of the problem.
Mr J. Wilson: But will there be resources in place?
Mr Pritchard: No matter what, we are talking about reallocation and obviously you cannot do what you do not have money to do. There is no doubt about that so there are some tough choices that have to be made, but to maintain the status quo means that you keep sinking millions of dollars every year into something that has proved not to work. By establishing an Advocacy Commission with advocates travelling around the province, we hope to introduce a new perspective into this, a non-medical perspective, where people look at what is happening in people's lives. What we hope will come out of that is that pressure will be brought to bear on every single one of you sitting around this table to start making the tough choices that need to come in terms of a new social contract with the people of this province, where you will be listening to us telling you what it is we need, and you better damn well listen.
Mr J. Wilson: But do we need a whole system of bureaucracy to do that at a tremendous cost?
Mr Pritchard: That is only one aspect of it. We are currently embroiled in a couple of advocacy projects dealing with psychiatric hospitals which have led to OPP investigations at two sites, where they are looking into almost 60 separate incidents between the two sites. We would hope that a well-funded advocacy program would be going into places and preventing this from happening any more.
I would just like to give you one example that came to us today from the Kingston Psychiatric Hospital. There is a patient there who has a history of being somewhat, what is the word, non-compliant. He likes to complain about treatment that he believes is not very good. Last night, he was asleep in his bed when there was a patient on constant observation. He woke up to see this gentleman reaching over him to go into his stuff. He took the stuff off the patient, sent him away and then stopped to check his goods and realized that there was a lot more missing. He went to a nurse. Together they went to the patient, and another patient who was beside this woke up, jumped up and kicked this gentleman in the chest. This gentleman pushed back. The nurse, because this guy happened to be a complainer, decided that the person who was the victim in this is going to the quiet room. This patient could not understand that and said, "I am not going to go." So she calls a code on him. Eight male staff came and severely beat the man in the process of putting him in the quiet room and then had the nerve -- and this is not an isolated case, we have heard this repeatedly -- to have the patient charged with assault, even though he has severe physical injuries, and he currently sits in the Nepean jail.
This kind of stuff, though none of us here in this room wants to admit it, takes place every day, at every psych hospital, whether it is general or provincial. It takes place within our boarding homes, in some group homes, in some community mental health agencies, every day.
Mr J. Wilson: Do we know the extent of that, because you say in your brief, "massive abuse of vulnerable adults."
Mr Pritchard: We met with Ernie Lightman, whose report is due out, and he identifies, I think, a total of some 600,000 vulnerable adults in Ontario.
Mr J. Wilson: Sean O'Sullivan had it up close to a million, but how many are being abused in your opinion?
Mr Pritchard: I would think that more are than are not. Let's just look at the psychogeriatric population. Irit had the misfortune of being out at Lakehead Psychiatric Hospital about a month and a half ago and managed to get on to the psychogeriatric unit without the staff on that ward being aware of it. What she found was eight elderly patients severely drugged and tied with sheet restraints to their chairs. No staff in sight. This is standard procedure for our senior citizens who for whatever reason have the misfortune to find themselves entrusted to the care of the state. We have an incredible need for advocates in this province.
Mr J. Wilson: Advocates right across the board? We heard the Canadian Bar Association -- Ontario today and representatives of the medical profession saying perhaps we could list in regulations cases where advocates would be needed. I can see the case for advocates in the case of psychiatric patients, but it becomes less clear, when many Ontarians receive their primary health care through walking through an emergency ward, whether or not we need an advocate there in all cases of declared incompetence. Any comments on that?
Mr Pritchard: Yes. We frequently have reported that if a member presents himself to the emergency ward of a hospital for a medical problem, the moment it becomes known by the medical staff that this person has a psychiatric history, the complaint is invalidated by the medical staff. They say, "This is a nut bar and obviously crazy and we do not have to pay a lot of attention to this." We have seen this over and over again. We have seen people who complain placed on some kind of medication by their family doctor, an anti-depressant, which has a tendency to affect the heart. I know personally of an individual who has suffered permanent coronary damage as a result of this, complaining about it for a six-month period when something could have been done, and it was not done because the person was a psychiatric patient.
If we look at a lot of primary care being given by the family, I believe the family has the best of intentions, but we have talked to a lot of our people who say that as disgusting as the drugs make them feel, they have agreed to do it because it makes mom feel better. Never mind that they cannot think straight any more. Never mind that they have no hope of ever re-entering the community as full-fledged partners in anything. There is a subtle coercion that takes place and it is not even intentional.
The need for advocates cannot be confined to any particular area. Once you start picking areas to apply it to, you leave all those other areas open to abuse. You cannot do that.
Mr Milne: One of the comments that is coming up is a sort of fear that there will be this hierarchy or bureaucracy of advocates. Having seen the figures, and unfortunately I do not have them with me today, that the funding body put out in terms of hospital admissions when people are involved with some sort of self-help model, I cannot imagine any institution more bureaucratic than a psychiatric hospital. If what we are proposing to do can help tear down some of those institutions, I sense we are going to have a lot less bureaucracy in Ontario than we have now. If a relatively small advocacy structure can start to replace rather monolithic, bureaucratic psychiatric hospitals --
Mr J. Wilson: My understanding of the role of an advocate is that you are not making decisions; you are simply articulating what the client is telling you. What if the physician says, "No, you are still going to a psych hospital," or, "I do not have a house for you because there is no money in the system"? I do not see how things improve much by advocating. As for making legislators know what the underlying roots of mental illness are, we are bombarded weekly with information on this and an advocate is not going to force me to read it or not read it.
Mr Pritchard: I do not think an advocate is going to force anything to happen other than to maybe identify the problem more clearly. You talked earlier about the mess of deinstitutionalization, and in fact it created no additional mess. What it did was bring out into the light of day what was happening to people all along. The fact that the system failed to adjust to the needs of individuals from institutions to the community is the failure of the system.
Mr J. Wilson: I think Mr Curling said that. Yes, I agree with that.
Mr Malkowski: I just want to respond to your comments. I had two concerns that were identified here as they related to the Advocacy Commission? What does it look like in terms of the process? Would each organization or vulnerable person have to recommend the name of somebody to the Advocacy Commission? Would they then use that approach? Will the Advocacy Commission be involved in making regulations, making decisions and developing the Advocacy Commission? Would you like to see something like that?
Second, related to the APSW, the transfer of that commission to the Ministry of Citizenship, you said you had a bit of a concern about that. In fact, there has not been a decision made on that yet.
Third, the experience you have described relates to the abuse in the institutions. It is very clear, and I think we have to realize that this has been set up, that we want to include the consumers. That is the point of the Advocacy Act, to empower individuals. I want to congratulate you on your presentation today. It has been very powerful.
Mr Pritchard: I would like to speak to the APSW issue first. We understand that it is only rumour at this point. What we do not want to see happen is that we are forced into a reactive position once again. We heard the rumour. We wanted to express our concerns about it right here and right now.
Mr Malkowski: I appreciate your feedback. Bringing this feedback to our government is certainly important, something we value.
Mr Pritchard: In terms of the establishment of the commission, it was always our understanding that it would largely be rights groups for the elderly and the disabled community that would be putting candidates forth to the government so that we would in fact control the commission, which would do the hiring and set the criteria. Again, we have a concern when we see our advocates being handed to us, possibly in the form of APSWs, even in the form of psychiatric patient advocates. It seems that it is becoming a done deal and we have lost sight of what this was all about.
Mr Winninger: Just as one quick point of clarification, you mentioned earlier a situation in which an ex-pyschiatric patient may seek emergency care in a hospital and will be discredited, to some extent, because of that past psychiatric history. Practically speaking, without that patient signing a form 14 consent to release psychiatric information, how would the emergency department know, unless the patient avowed the psychiatric history?
Mr Pritchard: Let's say that my family doctor has privileges at St Michael's Hospital. I am placed on a psychiatric ward of St Mike's hospital. Because my doctor is from St Mike's, I present myself to the emergency department of St Mike's. My name is punched into the computer. It is automatic. You can duplicate that process at any of the hospitals in any of the towns and cities.
Mr Winninger: So you are attending at the same medical facility where you were a patient in the psychiatric --
Mr Pritchard: If we look at the smaller communities of Ontario, where that is the only game in town, what is your alternative? To hitchhike 1,000 kilometres away?
The Chair: On behalf of the committee I would like to thank Mr Milne, Mr Pritchard and Ms Shimrat for appearing before this committee.
As Mr Harnick is no longer on this committee and he was a member of the subcommittee, I believe Mr Wilson has a motion to make.
Mr J. Wilson: Do I move, Mr Chair, that I become a member of the subcommittee?
The Chair: That is quite appropriate.
Mr J. Wilson: I think that is a conflict of interest if I ever heard one.
The Chair: All those in favour? Carried. This committee will adjourn until 9:30 tomorrow morning.
The committee adjourned at 1704.