ALPHA COURT NON-PROFIT HOUSING CORP
PERSONS UNITED FOR SELF-HELP, NORTHWEST
PATIENTS' RIGHTS ASSOCIATION, THUNDER BAY CHAPTER
FAMILY AND SERVICE PROVIDER ADVISORY COMMITTEE
PEOPLE ADVOCATING FOR CHANGE THROUGH EMPOWERMENT
CONTENTS
Monday 12 February 1996
Advocacy, Consent and Substitute Decisions Statute Law Amendment Act, 1995, Bill 19, Mr Harnick /
Loi de 1995 modifiant des lois en ce qui concerne l'intervention, le consentement
et la prise de décisions au nom d'autrui, projet de loi 19, M. Harnick
Alpha Court Non-Profit Housing Corp
Deanna Koziy, executive director
Thunder Bay Regional Hospital
Sandi Homeniuk, manager, mental health services
Hazel McLean, manager, psychosocial services
Sally Hamilton, quality management coordinator
Persons United for Self-Help, Northwest
Marilyn Warf, regional director
Patients' Rights Association, Thunder Bay chapter
Prue Morton, secretary
Ontario Medical Association
Dr Ian Warrack, president
Dr Ken Arnold, secretary, Thunder Bay Medical Society
Barbara LeBlanc, manager of health policy
Family and Service Provider Advisory Committee
Eve Gillingham, member
AIDS Committee of Thunder Bay
Sheila Berry, support services coordinator
Jocelyn Huculak
People Advocating for Change Through Empowerment
Len Maki, community outreach worker
Barbara Eccles
STANDING COMMITTEE ON ADMINISTRATION OF JUSTICE
Chair / Président: Martiniuk, Gerry (Cambridge PC)
Vice-Chair / Vice-Président: Johnson, Ron (Brantford PC)
*Boyd, Marion (London Centre / -Centre ND)
Chiarelli, Robert (Ottawa West / -Ouest L)
Conway, Sean G. (Renfrew North / -Nord L)
*Doyle, Ed (Wentworth East / -Est PC)
*Guzzo, Garry J. (Ottawa-Rideau PC)
Hampton, Howard (Rainy River ND)
Hudak, Tim (Niagara South / -Sud PC)
*Johnson, Ron (Brantford PC)
*Klees, Frank (York-Mackenzie PC)
*Leadston, Gary L. (Kitchener-Wilmot PC)
*Martiniuk, Gerry (Cambridge PC)
*Parker, John L. (York East / -Est PC)
*Ramsay, David (Timiskaming L)
Tilson, David (Dufferin-Peel PC)
*In attendance / présents
Substitutions present / Membres remplaçants présents:
Caplan, Elinor (Oriole L) for Mr Conway
Clement, Tony (Brampton South / -Sud PC) for Mr Tilson
Duncan, Dwight (Windsor-Walkerville L) for Mr Chiarelli
Marchese, Rosario (Fort York ND) for Mr Hampton
Also taking part / Autres participants et participantes:
Gravelle, Michael (Port Arthur L)
Ministry of the Attorney General
Spinks, Trudy, manager, implementation support and counsel, implementation support unit
Ministry of Health
Perun, Halyna, counsel, legal services branch
Clerk / Greffière: Bryce, Donna
Staff / Personnel: Swift, Susan, research officer, Legislative Research Service
The committee met at 0902 in the Valhalla Inn, Thunder Bay.
ADVOCACY, CONSENT AND SUBSTITUTE DECISIONS STATUTE LAW AMENDMENT ACT, 1995 / LOI DE 1995 MODIFIANT DES LOIS EN CE QUI CONCERNE L'INTERVENTION, LE CONSENTEMENT ET LA PRISE DE DÉCISIONS AU NOM D'AUTRUI
Consideration of Bill 19, An Act to repeal the Advocacy Act, 1992, revise the Consent to Treatment Act, 1992, amend the Substitute Decisions Act, 1992 and amend other Acts in respect of related matters / Projet de loi 19, Loi abrogeant la Loi de 1992 sur l'intervention, révisant la Loi de 1992 sur le consentement au traitement, modifiant la Loi de 1992 sur la prise de décisions au nom d'autrui et modifiant d'autres lois en ce qui concerne des questions connexes.
The Chair (Mr Gerry Martiniuk): Good morning, ladies and gentlemen. I've lost my clerk, but no doubt she'll be here in a minute. We have certain time constraints today in that we are embarking for Ottawa in the afternoon so we should proceed on schedule.
ALPHA COURT NON-PROFIT HOUSING CORP
The Chair: The first submission is from Alpha Court Non-Profit Housing Corp. Good morning. Could you identify yourself for the purposes of Hansard.
Ms Deanna Koziy: I'm Deanna Koziy, the executive director of Alpha Court Non-Profit Housing Corp.
The Chair: We have allotted one half-hour to your presentation, including all questions. I will let you know when you're within five minutes of the end by showing my five fingers and we'll proceed from there.
Ms Koziy: Hopefully I won't be taking the full 20 minutes.
I'd like to start off by thanking the committee for allowing us to present this morning. Just by way of background, Alpha Court Non-Profit Housing Corp is a community mental health organization which provides case management and supportive housing services to adults who have a serious mental illness. Our goal is to assist these people in achieving the highest level of independence as possible with the least amount of professional intervention. This includes advocating on behalf of the people we serve to ensure equal access to services and prevention against abuse and victimization.
Bill 19 contains many changes and refinements to several complex and important pieces of legislation. Alpha Court wholeheartedly supports the need to have a balance between the rights of the individual and society's ability to protect an incapable person from personal or economic harm. As so often is the case, it's easy to endorse such a belief. It is often the implementation that makes things difficult. What we'd like to offer today is some of our suggestions regarding the amendments of how we can make this transition a little easier.
As a mental health provider, what we've often found with the existing acts is they were very complex, they were very cumbersome and it was very difficult for a layperson to understand what was involved with them and, more importantly, how it affected the people we are to serve.
We have the responsibility to try to explain these acts to the people we serve and often we found we could not do it, and we often had to bring in lawyers to explain to us how it works so we could explain to our clientele and our family members how it worked. It is my sincere hope that what comes out of these amendments will be something that is very easy for the layperson to understand and, more importantly, for vulnerable people themselves to understand. If you could, at the end of it, put out a quick, easy reference guide in 10 pages or less, I think we'd all be very grateful.
We'd like to start off regarding amendments to the Health Care Consent Act. We'd like to commend the government with regard to the Health Care Consent Act and the Substitute Decisions Act for broadening the definition of who can be included as a substitute decision-maker by clarifying the definition of what exactly is a "parent" to include custodial and access parents and including relatives related by marriage. There are a lot of people out there caring for their family members and the prior definitions exclude a lot of them. So it does allow family members to be more fully involved in making decisions on behalf of their incapable relatives.
We would like to talk a little bit now about the exclusions from the definition of "treatment" as proposed under the health care act. The definition of "treatment" excludes "a treatment that in the circumstances poses little or no risk of harm to the person" with respect to the obligation of the health care practitioner to obtain personal or substitute consent.
The intent of this amendment is obvious. It was to reduce and minimize the existing formalities around delivery of routine low-risk treatments, such as first aid, and to assist, I'm sure, a lot of long-term-care agencies in providing ongoing treatments. However, the proposed amendment does not define what types of treatment fall under the category of "little or no risk of harm," and we're concerned about this creating inconsistencies regarding obtaining consent, as it is subject to personal interpretation.
There are many different professional groups and bodies listed as health care practitioners and I think they all come from wide-ranging viewpoints and philosophies, so we're concerned that what may be considered low risk to one health care practitioner may not be to another. What we'd like to suggest is the following.
-- That the Health Care Consent Act contain clearly articulated guidelines of what types and ranges of treatment would qualify as being low to minimal risk. The regulating and professional bodies of health care practitioners should be asked to assist in the formulation of these guidelines.
-- If a person is capable of consent, that consent be sought prior to the administration of low-risk treatments on the understanding that information required about the treatment will be minimal. In reality, many health care practitioners do operate in this manner.
-- If a person is incapable of consent with respect to low-risk treatment, the treatment can be administered without the consent of a substitute decision-maker, it falls within the clearly defined definition of low-risk treatment.
-- The treatment is in the person's best interests and the health practitioner is not aware of an authorized substitute decision-maker who would object to that treatment.
I'd like to discuss a little bit about the elimination to require formal rights advice to persons determined to be mentally incapable.
Alpha Court does have concern about the elimination of rights advisers and the requirement to provide rights advice to people prior to them being determined mentally incapable. Under the proposed changes, there is no requirement or obligation by health professionals in lieu of a formal rights adviser to inform a person that they have been deemed incapable, nor that they have the right to appeal this finding. We feel that if formal right advisers are to be eliminated, then the act should require that the health professional who is rendering a decision regarding an individual's mental capacity must inform the individual of the following: the nature of the finding and how it was reached, and the individual's rights to apply to the Consent and Capacity Board for a review of the findings and how to apply to the board.
I'd like to comment on the amendments to the Mental Health Act, specifically regarding the definition of "rights adviser." Bill 19 seeks to amend the definition of "rights adviser" in the Mental Health Act from "in the prescribed circumstance, a person who is a member of a prescribed category, other than a health practitioner or a person who is employed by a health practitioner or health facility" to "a person, or a member of a category of persons, designated by a psychiatric facility or by the minister to perform the functions of a rights adviser under this act in the psychiatric facility."
We're concerned this may create a situation where a serious conflict of interest could exist. If the rights adviser actually is an employee of the psychiatric hospital, the rights adviser then would be responsible for advising people of their rights to contest decisions resulting in their involuntary admittance and treatment by the hospital which is also the employer of the rights adviser. We're concerned that this places serious liability obligations both on the hospital and on the individuals responsible for providing rights advice, should a person who is rendered for involuntary treatment choose to contest the nature and the quality of the rights advice they received.
Rights advisers have been in place in provincial psychiatric hospitals for the past 10 years and are providing the rights advice required in the proposed amendments. Therefore, we presently have a system in place with trained, qualified rights advisers who are not employees of the hospital and are not in a conflict-of-interest position. We would like to suggest that the present system of providing rights advice to patients in a psychiatric facility remain intact.
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Amendments regarding the Substitute Decisions Act:
Powers of attorney: The amendments to this act with respect to powers of attorney are intended to help simplify the witnessing of documents by removing the requirement that the witness have no reason to believe the grantor is incapable of giving power of attorney. The problem with the existing requirement was that the definition was open to interpretation regarding how the witness was to arrive at the belief that the grantor was mentally capable or incapable.
It became cumbersome, as some interpreted the definition to mean that the witness must come to this conclusion using the same criteria that a health professional such as a doctor is required to use when rendering a decision on mental capacity. There was no standard defined as to what constituted reasonable belief for a non-health care professional; in other words, a layperson.
While the proposed amendment resolves this issue, it does, however, open the door for another potential problem. With no requirement on the witness's part to make a judgement regarding a person's mental capacity, a mentally incapable person can sign a power of attorney that may not be in the best interests of that individual. This could result in abuse of powers of attorney, especially when it applies to property matters. The amendments to the act allow a continuing power of attorney for property to override statutory guardianship by the public trustee.
We would like to suggest that the requirement that witnesses must be of the belief that a person is mentally capable remain in the act. However, with the inclusion of what reasonably constitutes forming an opinion regarding mental incapacity -- and it's written in some commonsense guidelines that a layperson would know and understand. We're not talking about rigorous physical or mental guidelines that a health care professional would use.
Statutory guardianship of property: The proposed changes with respect to statutory guardianship of property are a positive step forward in allowing families to more easily assume the role of caring for the affairs of their relatives. The proposed amendment will allow a person with a continuing power of attorney with respect to property for that power of attorney to continue once the person is incapable and limiting the role of the public guardian and trustee is one that we endorse. This endorsement is conditional, however, on our concerns regarding the witnessing requirements of powers of attorney being addressed.
Activating powers of attorney for personal care: As a mental health service organization, we would like to support the amendments which allow special provisions to be included in the power of attorney whereby the grantor can waive the right to prevent his or her decision-making powers being removed during incapacity.
This provision is important to people suffering from a serious mental illness. It allows the individual, when well, to put in place a system of care or plan of care that will allow substitute decision-makers to ensure that the individual receives proper mental health care they require when ill.
One of the major problems encountered by family members, care providers and the mentally ill person themselves is often that when the person becomes ill, they refuse treatment. By allowing special provisions in the powers of attorney for personal care, the individual then can have more control over their mental health care and treatment without having to jeopardize everything they worked for when well. This is a serious problem for a lot of mentally ill people who often, when ill, end up losing maybe their jobs, their housing, a lot of things that they worked for, because they were incapable of making competent decisions when ill.
Repeal of the Advocacy Act: It is Alpha Court's understanding that the repeal of the Advocacy Act does not represent the government's abandonment of ensuring the interests of vulnerable adults are protected, but rather providing different mechanisms for providing advocacy to vulnerable people.
Historically, family, friends and community-based groups have always advocated for the rights of the most vulnerable in our society, and we will continue to do so. The current economic environment in this province, however, has resulted in service cutbacks to a multitude of social services, including legal aid, thereby creating a situation whereby many of these traditional resources are now less able to advocate for vulnerable people.
This will result in an increasing burden being placed on families and friends who are often taxed to the limit trying to provide the basic necessities for their relative or friend and who often turn to community-based groups to help assist them in advocacy.
When you're advocating on behalf of somebody, to access services is sometimes a very complex issue to go through. There tends to be a lot of bureaucratic red tape, you've got to phone everybody up and down the line to ask: "This person is entitled to these services. How come they're not getting them?" Often what happens is it's very intimidating for family members and it's also very time-consuming. It's important to remember a lot of our family members work and may even have, if it's an elderly parent, their own children; if it's a relative who's mentally ill, they have their own families to contend with. Often they get frustrated and burnt out and they don't know what to do.
Vulnerable people in our society will continue to need advocacy services to ensure the protection of their interests. What vulnerable people do not need is a highly expensive bureaucratic system which is unwieldy and ineffective. The government does have a responsibility to ensure that the interests of vulnerable people are protected and that an effective, accessible advocacy system is in place in the province of Ontario. If the government is not going to be responsible for the direct provision of advocacy services, it must ensure that the financial resources are available so that this function can be effectively provided in the community.
It is important to recognize that not all vulnerable people have supportive, caring families or are being served by a community agency. There are occasions when it is the family or the agency itself that the vulnerable person may require help in advocating against. Clearly, whatever mechanism replaces the Advocacy Commission must address this issue. Conflicts of interest are bound to arise and vulnerable people need to be assured that a non-partisan body exists to protect them. The need to have some advocates granted with legislated powers to investigate alleged abuses cannot be overlooked as well.
The importance of having properly trained advocates who are qualified cannot be emphasized enough. One of the criticisms of the Advocacy Commission was regarding the lack of training of the advocates and the lack of set standards for conduct. Guidelines, standards, codes of conduct and training programs need to be created to ensure consistency and quality in the provision of advocacy services.
Community groups, families, friends and other stakeholders do want to participate with the government in discussion of how to best provide advocacy services which meet the needs of vulnerable people in our society. It is encouraging to see that the Ministry of Citizenship, Culture and Recreation has already begun holding focus groups to solicit ideas and viewpoints.
In closing, Alpha Court would like to thank the committee for hearing our comments today. As mentioned at the outset of our presentation, Bill 19 is amending some very complex pieces of legislation that were intended to ensure that the rights of the individual were protected and respected, while at the same time providing a vehicle to carry out society's moral obligation to protect and care for the most vulnerable. It is our sincere hope that this committee will be able to utilize the comments by ourselves and others to work towards achieving this goal.
Mr Ron Johnson (Brantford): I want to thank you for your presentation. It was certainly insightful. I just want to make a couple of points. You indicated that practitioners could do some rights advice work on their own, and of course no part of the clinical team which we're dealing with will be the rights adviser. The reason for that is conflict of interest, and I want to make that point clear.
You also indicated that your concern was that there was no requirement for a practitioner to inform somebody that they've been found incapable. I want to let you know right off that I have some concerns with that as well. What we've been hearing -- we had presentations from the College of Physicians and Surgeons of Ontario and from the College of Nurses and they are clearly saying -- and this has been said by a number of the groups -- that informing them and going through that process could result in the deterioration of the health of the individual.
We've heard that from the College of Physicians and Surgeons. They've all said that it's their standard of practice to give that advice when they feel appropriate and to let them know that they've been found incapable. My question to you is, would you feel comfortable if this issue was addressed through regulation within the colleges? Would that make you more comfortable? Does it have to be legislated?
Ms Koziy: I'm of two minds, I think. I would like to see people do it because I think people do have a right to be informed that they are being rendered incapable. If you and I were ever in a position where we were having those rights taken away from us, we would like to know it and the reason why. We wouldn't necessarily be happy with it, but we have a right to know it. The reason we're asking for it to be legislated is that I think just common experience is you can ask somebody to do something, but it doesn't necessarily mean they follow through with it.
As a consumer agency and as a family member myself, if I could be assured that the regulatory bodies, the physicians, nurses or any health care practitioner, would advise people of their rights, that they would do this as a matter of fact, then yes, I would feel more comfortable with it. Right now, I'm not feeling terribly confident. I think a lot would but some may not.
Mr Ron Johnson: I want to thank you for the answer. I'm going to yield to Mr Clement.
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Mr Tony Clement (Brampton South): Thank you for your presentation. I will ask one of the two questions I was going to ask. In regard to your commentary on the definition of "treatment" and the problematic wording, in your view, of the "little or no risk of harm" and how that could be interpreted, my concern is, if you put something in legislation -- we're dealing with a very fluid situation in terms of treatment practices, which change month to month, let alone year to year, in certain cutting-edge aspects of health care. Would it be satisfactory from your perspective if we dealt with that in the regulations, with having that dialogue with the CPSO among others? Would that be a way to get at the concern you've expressed, or do you have to see it in legislation?
Ms Koziy: I think regulations would be sufficient, acknowledging that treatments do change over the course of time. But as long as there's something there that people can refer to, to provide some guidance, because I'm terribly concerned that with that, it's going to open up a whole can of worms from a legal position. I'm not a lawyer, but I can see somebody having a heyday with this if we don't put some guidelines in place.
The Chair: I was remiss and I did not identify our local member. Mr Gravelle is with us for the day and I understand Mr Duncan has the great, enjoyable task of being with us for a week.
Mrs Elinor Caplan (Oriole): Thank you for an excellent presentation. First, the ministers said that they had an opportunity to consult with groups and organizations. I'm just wondering whether you were part of that consultation.
Ms Koziy: Not yet, no.
Mrs Caplan: You were not.
Second, I'm going to pick up on Mr Johnson's point, because I think what was pointed out to us by the colleges on this issue of informing people of their incapacity and their right to appeal was the fact that there is so much inconsistency. As I understand it, are you asking for something that would oblige professionals, all professionals no matter which college they are accountable to, to inform of a finding of incapacity, inform people of their right to appeal and let them know how to go about doing that? Was that what you were requesting?
Ms Koziy: Yes, that's what I am, especially if somebody has taken the onus, the professional who is responsible declaring somebody incapable, I think they also have a professional obligation to let them know that they have done that.
Mrs Caplan: And that could be in the standards of practice or, since there is such inconsistency in approach -- what we heard is that that is part of the College of Nurses' standards of practice and if someone didn't do that, they could be disciplined for not living up to the standards of practice. But the College of Physicians and Surgeons said that getting informed consent was, but informing of incapacity was not presently part of their standards of practice and someone would not necessarily be disciplined.
Ms Koziy: I think what our concern is, again, the person who's responsible for making the decision, because I think what happens is you get into a team situation with different health care practitioners, and some may have an obligation but if they didn't render the capacity, I think it's easy to shift it around: "I don't have to do it. You have to do it." So I'd like the onus to rest with the person who is making the finding.
Mrs Caplan: The last point I want to make, I think it's a very legitimate concern you have about the appointment of rights advisers. What we've heard from the government is that the PPAO will remain intact in the provincially run psych facilities but it could be a hospital administrator in a general hospital with a psych unit who could appoint a rights adviser. What we've been suggesting is that the mandate of the PPAO be expanded to include the psych facilities in general hospitals. Would you support that kind of an approach?
Ms Koziy: Yes, we would. I think a lot of provincial psychiatric hospitals are obviously in their communities where there are schedule 1s. We've already got a resource. If you're looking at a cost perspective, maybe looking at how busy they are, can they go over in smaller communities, I imagine, though, in large areas like Metro Toronto and stuff, you'd have to have separate rights advisers.
Mrs Caplan: What about in community mental health programs where someone may require treatment, they may be in and out of what would be considered capability but they don't require hospitalization? I think the PPAO, the Psychiatric Patient Advocate Office, could also be the one that could identify people in the communities, that they could ensure the training and the standard and perhaps even certify those who were capable of rights advice from which people could choose. Would you be comfortable with that kind of approach?
Ms Koziy: Yes, we would.
Mrs Marion Boyd (London Centre): I really enjoyed hearing your presentation. One point you talked about was the issue of the person who is witnessing a power of attorney and this issue of it now being taken out that they have to understand that the person is incapable.
We have many pieces of legislation where we rely on reasonable belief, and it seems to me that I couldn't agree with you more. I think there has to be at least some requirement on the part of that person to assume that the person is not being coerced into signing that power of attorney or indeed does not understand what they are signing. This has been sort of our common law for many, many years in terms of wills and so on. So it seems to me you're right that we need to put some protection in there for people who are in that situation.
Would you say your experience would lead you to be concerned about the way in which people who may or may not be in conflict of interest might make assumptions about their ability to do this when it wasn't appropriate?
Ms Koziy: Yes, I am very concerned about that, especially when there are significant financial estates involved. Also, the fact is that a power of attorney may not even be signed by a person's family member. There are a lot of con artists out there who are willing to take advantage of vulnerable people, and I'm very concerned that all of a sudden you may get somebody who is incapable, somebody out there whose sole purpose is to deplete their monetary estate, getting involved and signing this, and the individual's immediate family may not even be aware of it.
Mrs Boyd: That cuts both ways, because we certainly have heard the other side of this, that all families are not the loving, helpful people we would like to believe they are, and indeed the families may have a great deal to gain as well. That's the balance that we want to reach. Where families are willing and able and are the most appropriate people to make substitute decisions, that's fine, but where that's not the choice of the person -- and I'm sure you have many clients where there may be the case, they have reason not to trust, particularly because we know that familial abuse is often a very common experience for people who have mental illnesses -- they may find it a very threatening prospect to have a person who may have been abusive in the past have complete power over them at that point in time.
Ms Koziy: Yes.
Mrs Boyd: Mr Chair, are we going to be able to have a copy of this presentation? It was an excellent presentation and there were a lot of very good ideas in it.
The Chair: It will be copied and distributed once we get back to Queen's Park.
THUNDER BAY REGIONAL HOSPITAL
The Chair: Thunder Bay Regional Hospital, Ms Homeniuk. Welcome. If others are to take part in the actual submission, I would ask that they also be identified for the purpose of the record.
Ms Sandi Homeniuk: Certainly. Thank you for inviting us to make a presentation at these hearings. My name is Sandi Homeniuk. I'm the manager of mental health services at Thunder Bay Regional Hospital, and with me this morning is Hazel McLean, the manager of psychosocial services, and Sally Hamilton, the quality management coordinator. They will also present with me today.
We welcome the opportunity to participate in these hearings on behalf of Thunder Bay Regional Hospital. As health care practitioners, we must be knowledgeable about the impact of the current legislation and the proposed amendments. At Thunder Bay Regional Hospital we provide a broad range of specialty services to individuals throughout northwestern Ontario. The hospital is a 463-bed acute care general hospital which is also designated as a schedule 1 facility.
The Substitute Decisions Act, the Consent to Treatment Act and the Advocacy Act, although necessary to protect the rights of Ontario's citizens, have proven to be cumbersome for health care providers to interpret and apply. The amendments articulated in Bill 19 clarify and simplify the current legislation. Thunder Bay Regional Hospital supports the amendments in principle, with some recommendations which we will outline.
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In this hospital, we have established an interdisciplinary committee which has been meeting for several months to develop practical policies and procedures for implementation of this legislation. Despite numerous educational sessions and availability of guidelines provided by OHA, the College of Physicians and Surgeons and the College of Nurses, policy development has been a very complex task.
One dilemma which arises for health care professionals who treat a variety of patients in a schedule 1 facility, particularly in a general hospital, is whether to regard as psychiatric patients those patients who have "disorders of the mind" such as dementia. These patients are most often being cared for outside of the psychiatric unit; for instance, in a medical or a surgical area. Applying the Mental Health Act is often more manageable than existing legislation. This dilemma may not be clarified as a result of Bill 19, but it is one the general hospital schedule 1 facilities will need to resolve.
For Thunder Bay Regional Hospital, the major issue which arises from Bill 19 with respect to the Mental Health Act is the issue of provision of rights advice to psychiatric patients. A rights adviser means "a person or a member of a category of persons designated by a psychiatric facility or by the minister to perform the functions of a rights adviser under this act in the psychiatric facility."
The Lieutenant Governor in Council will stipulate the designation, qualifications and requirements of these rights advisers, yet it would seem that the rights adviser would or could be an employee of the psychiatric facility. Such an arrangement would be a clear conflict of interest. An employee of the facility should not provide rights advice in respect of a decision rendered by another employee of the same facility.
Moreover, a rights adviser who is an employee of the facility might be perceived as influencing the patient with respect to options, such as application to the Consent and Capacity Review Board. Any influence might be the result of the adviser's concern for the patient's best interests. A rights adviser not associated with the facility will function according to the directions of the patient and present factual, objective options to him or her, regardless of best interests.
We would like to recommend that the provincial Psychiatric Patient Advocate Office designate an individual to provide rights advice at Thunder Bay Regional Hospital. This office has been established for some time and is very knowledgeable about advocacy issues. Thunder Bay Regional Hospital would also accept other options for the provision of rights advice, provided the individual or category of individual is not an employee of our corporation.
Ms Hazel McLean: As Sandi has stated, the amendments do clarify and simplify some sections of the current legislation. There are many aspects of the Advocacy Act, Consent to Treatment Act and Substitute Decisions Act which we do and have supported. For instance, under the current Consent to Treatment Act, patients must be informed when they have been assessed as incapable for a treatment decision and notified of their rights in regard to this assessment.
Our concern is the removal of any reference to rights advisers in the proposed Health Care Consent Act. The system will no longer ensure that patients' rights are respected. We acknowledge that since the enactment of the legislation, rights notification has not been provided consistently. This inconsistency is related to the complexity of developing policies and educating health care practitioners.
We recommend that Bill 19 require health care practitioners to inform patients of a determination of incapacity, with the obvious exception of comatose patients. We also recommend a role for rights advisers in the Health Care Consent Act.
We support the current mandate of the public guardian and trustee to intervene when equal decision-makers are in conflict or if no substitute decision-maker is available. The establishment of a public guardian and trustee office in Thunder Bay has significantly improved our access to these services. We appreciate their prompt attention to referrals and requests.
Bill 19 defines "course of treatment" and provides for a "plan of treatment." We support these changes to the current legislation.
The amendments also significantly improve the process for admission to a long-term care facility when a person is considered incapable of making this decision. We support this section of Bill 19.
The principle of presumed capacity and the guidelines for assessment of capacity will improve the ability of health care practitioners to reliably assess capacity. The challenge for most health care institutions is to provide information to staff at all levels, to ensure they have the knowledge to follow the legislation. We expect that these amendments will facilitate this process.
In summary, Thunder Bay Regional Hospital generally supports Bill 19. We hope that our recommendations with respect to patients' rights will be considered.
Thank you again for allowing Thunder Bay Regional to participate in today's hearings.
Mrs Caplan: I appreciate that. I share the concerns that you have. Also, I've said on numerous occasions that there are many parts of the bill which are an improvement over previous legislation, and you've pointed many of those out. The first question I would have is, were you part of any consultation with any of the ministers involved in this legislation prior to the tabling of the act?
Ms Homeniuk: No, we weren't.
Mrs Caplan: You've raised a couple of issues that I raised with the previous presenter, and I just want to make sure that we clarify that. You said you identified as a major issue the potential conflict of having the hospital administrator appoint a rights adviser, and you go on to suggest that the provincial Psychiatric Patient Advocate Office could have its mandate expanded. You then go to say it could be someone else, and my question is, why duplicate? If you have an office that's working well, which could look after the setting of standards and the training for rights advice and the certification and designation of an individual, why would we want to reinvent the wheel and find some other place to do it?
Ms Homeniuk: Absolutely; our first recommendation or first choice would be the provincial Psychiatric Patient Advocate Office. If, for whatever reason, this committee or legislators determine that another group should provide this rights advice, that's fine with us, but we don't believe it should be an individual of Thunder Bay Regional Hospital.
Mrs Caplan: I'll just restate again, the concern I have is that when you have something that is working well, if you want to have consistency, especially if you want standards and training to make sure that those people are in the community, are well respected, my own view is that there is absolutely no need to reinvent the wheel and set up another body. It's likely that would bureaucratize it, and then you'd have competing interests, so my support has been for the expansion of the mandate of the PPAO. I think they're quite well respected by those in the field, and I appreciate your comments.
The other point that you make is the inconsistency among the professions. I think there is a view that all have the obligation to seek consent before treatment. The issue comes around the obligation to inform someone of a finding of incapacity, and so I think it's important to separate those two concerns. So the question there is, should the legislation have a statement of principle, for example, that all providers who have the ability to determine incapacity have a obligation to see that the patient is informed of their incapacity and also informed of their right to appeal? Then, in the Regulated Health Professions Act, the individual colleges could determine how they, within their standards of practice, would go about doing it.
The other thing is the act could just say that this should form part of the standards of practice of the profession. How specific do you think this act should be in defining the obligation?
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Ms Homeniuk: We support that the act should include the provision to inform the individual when there has been a finding of incapacity. One of the problems we encounter with the Regulated Health Professions Act is the exclusion of social workers. Particularly when it comes to admission to long-term care facilities, social workers are very often involved. So trying to cover, through RHPA, all of those criteria would leave social workers out.
Mrs Caplan: That's an excellent point. For those who have been arguing "Leave it to RHPA," social work is not included under RHPA. While no one wants to offend self-governance, you want to make sure that all the providers, whether they are covered by RHPA or not, have that same obligation. I think that's an excellent point.
There's one other point that hasn't been brought up yet and I thought of it while you were speaking, and that is that this act now allows for the appointment of a representative if a patient doesn't object, whereas prior to this, before you could have a representative for the purpose of disclosure of information, you had to have overt consent. I thought of that when you talked about the comatose patient, because of course in this kind of arena there's the black, the comatose patient, and then there are those who are caught in and out of capacity or capability all the time. Then there are those who may not appear competent, because of some communication barrier or whatever, but in fact are.
You also raised the issue of the difference between a clear mental disorder under the Mental Health Act and those with a physical injury, such as brain injury and so forth. That's why I was also thinking about the fact that people now, if they're silent on the appointment of a representative and the differences of those kinds of patients under the different acts -- I thought you might want to just comment a bit about the different kinds of patients you're dealing with and also the fact that right now you have to get their consent before a representative, no matter which act they're under.
Ms Homeniuk: It's been our experience in psychiatry that although every patient on admission is given the option to appoint a personal representative should he later become incapable, I believe maybe one individual in the past two years has chosen to follow that option. I think it should still be an option for people; it's just not utilized very often.
Mrs Caplan: You ask them?
Ms Homeniuk: Every single patient.
Mrs Caplan: What would happen if they say no, they don't want to appoint anybody on admission? When they become incapable, then the procedure is --
Ms Homeniuk: We follow the act as it's set out.
Mrs Caplan: Do you see any reason for the change in this legislation? Everyone I've spoken to has said that process has worked just fine.
Ms Homeniuk: The process has worked fine. In a general hospital schedule 1 psychiatric facility, we may or may not have the volume of treatment-incapable psychiatric patients that, say, a tertiary provincial psychiatric facility might have. We've not done any comparison in statistics, but just offhand I would say we probably have fewer treatment-incapable individuals than tertiary care.
Mrs Boyd: Thank you very much for your presentation. One of the things that makes it really interesting for us is hearing from you because of the breadth of experience you have, having acute-care as well as psychiatric facilities in the same hospital. It interests me that when you talked about the rights advice, you were talking about the psychiatric part of that, but really, it's true in the other series of situations as well, isn't it? You would see a lot of people in the geriatric area, you would see a lot of people who were accident victims, you would see a lot of people who might have diseases such as MS or AIDS. All of those might be in and out of capacity for various reasons at different times, so it's quite a lot of experience you have of the full range of situations.
I certainly agree with you that, as regards the Mental Health Act, the psychiatric patient advisers have really been wonderful. I remember working with them at the beginning, with great resistance on the part of most of the professionals in the health field to the psychiatric advisers initially because it was assumed they would be interfering with the prerogatives of those particular professionals. I think they have become part of the team in a way that's most appropriate. They're not part of the team in that they're employees of the same facility, but they're seen as being helpful rather than obstructive. I would agree with you that it really has worked very well.
We've heard from physicians particularly on this issue of harming people by telling them about incapacity, and Mr Johnson raised this. One of the things that really concerns me is that professional assumption that somehow the physician knows better than the patient. It worries me. I think it's out of a caring aspect -- I'm not suggesting there's any other motivation -- but I think we know now, with the experience we've had in geriatrics, for example, that we made assumptions about what people were capable of doing and deciding that have proven to be absolutely wrong, and I think the rights advisers in the mental health field have shown the same thing, that once you're clear with people, they very often are quite prepared to make sensible decisions. Could you comment on that?
Ms McLean: Actually, I'd really like to comment. It's something that health care practitioners in the acute-care field are not necessarily comfortable with yet. I don't think it's really been our practice to inform people that we don't think they're capable so we're going to a substitute decision-maker. The previous legislation, in terms of the way we had to do it -- to read a form that was very long and wordy -- was not a humane way of doing it, and I can understand the physicians objecting to that. But if they're allowed some latitude in judgement about how to communicate with this patient, "I really think I'm going to have to go to your wife or to your son to make this decision in a humane way," I think that's reasonable. We need to teach health care practitioners that it's our responsibility that we should do that.
There still has to be the rights adviser who comes in and explains about the review board, that aspect. That should not be the responsibility of the health care practitioner. The health care practitioner should in some way inform the patient, "We don't consider you capable of making this decision." I don't know whether Sally would like to add to that from a risk management point of view, because we've had a couple of situations with surgeons where Sally's worked through this with them.
Ms Sally Hamilton: My experience is that we had to coach the health care professionals through the process, because it really is quite a complex one and something they've had to learn as we've gone along. Once they've been coached through it, I don't think they find it as onerous as they thought it would be. Our experience has also been that the patients have appreciated having that opportunity to know more about what is going on with their care. I think it's been a very positive experience, in fact. I appreciate the fact that it needs to get less complex, and I think the legislation helps to do that, but I like the fact that our patients have that opportunity to respond to being told they are incapable. Overall, for hospitals in general and for patients, it is a much better situation.
Mrs Boyd: It's often a relief, isn't it, for a patient? They may have been feeling confused and feeling the huge burden of this, particularly in the geriatric area. Often, having somebody say, "Do you really feel you're able to make this decision? How about some help?" would be very helpful to a lot of them.
Ms Hamilton: Our experience with that -- and again, it's limited -- is that there may be some disbelief on the part of the patient. That leads them to request the rights adviser to come in and they work their way through that and feel very comfortable with the decisions being made, whereas in retrospect, if that had not happened, there's a good possibility that they would feel they had not been given an opportunity to respond to being found incapable.
Mr Rosario Marchese (Fort York): It's interesting how various people in the field treat these concerns differently. We had -- I believe she may have been a nurse, but I don't remember. She read out the form, and the way she read it, all of us were offended.
It's interesting that what you're suggesting is that rights notification is important, but how you handle that is the way to deal with rights advice. You can either decide, "This is so complicated and cumbersome that we don't want to do it," or "Rights advice is important, but this is cumbersome and perhaps we can make it a little more flexible." I appreciate that you take rights advice seriously. What you didn't say -- and I want to hear it -- is why you think informing the individual is so important.
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Ms Homeniuk: One of the reasons we feel quite strongly about the provision of rights advice is that it speaks to our corporation's values to respect the patient and to treat the patient in a manner that promotes his dignity. We believe providing rights will support those values.
Mrs Boyd: One of the issues that has arisen with respect to the plan of treatment and to what is treatment and what is non-treatment -- several different speakers have talked about it -- is where nutrition and hydration fits into that picture, whether that's treatment or non-treatment, and the issue of consent to non-nutrition, non-hydration. Could you comment on that.
Ms Homeniuk: I can comment on that with respect to mental health because it does crop up periodically that individuals with mental illness will need to be nourished and hydrated when they would perhaps choose otherwise. We've not had a problem in doing those kinds of things under the existing Mental Health Act, in describing that as a plan of treatment. I guess it's not been challenged.
Mr Frank Klees (York-Mackenzie): Thank you for your presentation. I would like to follow up on the conflict-of-interest issue you raised. It's certainly a recurring theme, and we want to make sure we get this right. Your specific concern is the possibility of having an employee of a facility appointed as a rights adviser, that this would create a conflict situation. Given that the regulation under Bill 19 regarding rights advisers would not restrict a hospital from making arrangements with a third party to provide that rights advice, would that flexibility by regulation give you a level of comfort? Would that address your concern?
Ms Homeniuk: Partially. There would still be a perception that the third party had a direct-line authority to the corporation and in some way the corporation might still be pulling the strings with respect to rights advice. It's further removed than having a front-line employee providing that advice, but I think it would be better to have an independent office.
Mr Klees: I'm interested in that. You have some broad experience in this. Do you have specific experiences in your own practice within your facility that give you reason to believe that if a third party were appointed by the hospital itself, there would be a conflict situation? Are you speaking from experience on this? We have to get to the root of this, why we feel this issue of trust isn't there.
Ms Homeniuk: I can't say from direct experience that I've been aware of other potential conflict-of-interest situations due to a third-party or purchased-service arrangement for rights advice or for any other kind of service. Whether or not the system is fair, there needs to be a perception of fairness. To create a perception of fairness, you have to remove the office that provides rights advice from the facility making the decisions whereby the individual is rendered incapable.
Mr Klees: The PPAO would in fact be used to train rights advisers. Right now the PPAO, I believe, serves 10 psychiatric facilities in the province, and one of the problems is ready access. We're trying to streamline this process and make sure that rights advice is available when it is needed. To broaden the scope in terms of who can provide that rights advice is really an integral part of bringing that efficiency to the system. Given the fact that we would use the PPAO as the trainers for individuals who would provide that rights advice, does that give you a sense of comfort? Do you feel we could work with that to ensure that we have qualified people in the field to provide that rights advice?
Mr Homeniuk: I think that would alleviate the concern about a trained individual providing rights advice. It doesn't answer the question of who that individual would be, whether that individual would be an employee of the hospital or an employee of an external agency contracted to provide a service.
Mr Klees: It's been my experience in the short time I've served as a member of the Legislature that employees of psychiatric facilities as well as schedule 1 hospitals have come to me advocating on behalf of patients within the facilities they serve. I have no doubt that the nurses and the professional people serving in these facilities care deeply about the people they are serving. To get back to the core issue -- I don't want to debate this, because we want to get it right, as I said before, but given what I've seen from professionals in the field, who care deeply about their patients, why don't we believe we could trust employees of a facility to provide this advice?
Ms Homeniuk: Your comment is one I can use and build upon to explain why I think that person shouldn't be an employee. I'll use the example of an individual who's quite mentally ill and perhaps is paranoid or delusional and doesn't want to take his medication. As a health care practitioner, I believe that individual should take it, that he is suffering unnecessarily and that if he were to take medication it would alleviate the symptoms he is experiencing and his suffering. In the best interests of the patient I might believe he should take that medication. I may not maybe emphasize strongly enough, or might soft-pedal, his option to apply to the review board or his right to continue to refuse to take that medication. As a health care practitioner, I'm involved with this individual on a different level and I want what's best for him. I might not even tell him of the option to apply to the review board. I know what that does to an organization. It's time-consuming; it takes people away from their practices to prepare for a board hearing, which can be lengthy. There's also an avenue to appeal a review board decision. As a health care practitioner, in the best interests of the patient, it might be best if he just takes that medication. So if it were entrusted to me to provide that rights advice, I couldn't say I would be as objective, fair and unbiased towards that patient, and he needs to have his rights explained in a fair, objective and unbiased manner.
Mr John L. Parker (York East): The question was raised earlier of whether you had been consulted in the process of establishing this new bill. Did you attempt to contact the Attorney General's office or the Health ministry in any respect in the preparation of the bill?
Ms Homeniuk: No, I didn't.
Mr Parker: I just wanted to make the point that about 80,000 people did by telephone and 30,000 did by letter, which makes it a bit difficult for us to get back to all those people who volunteered input and even more difficult to follow up with others who we hadn't heard from, but there is this process of consulting. We think we've recognize the message that was coming to the government. We tried to address the message we received loud and clear in the bill we have prepared. We're fine-tuning some of the details now and we're very grateful to you for your help in that process.
On the subject of disclosure to someone who has been found incompetent that that finding has been made, we're grappling with that. We're receiving different advice from different quarters on whether that should be done or shouldn't be done, and if it's to be done, just how it should be done. Could you give us your guidance on how you would like to see this bill amended to address that point?
Ms McLean: As I said earlier, it needs to be amended to allow the health care practitioner to develop a humane way of doing it. They need to know it is their responsibility to inform the patient that they do not feel that patient is capable of consenting to the treatment that's being proposed and that they will be going to see a substitute decision-maker. Likely there should also be something in writing left for the patient, but something that's more user-friendly, that's written in lay terms so they can understand the language, and that they still have the right to request a rights adviser or not.
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The Chair: May I thank you for taking the trouble to come today. We really appreciate the practical application of the philosophy we're discussing here. It's been most valuable input. Thank you.
Mrs Caplan: I have a question while we're waiting for the next delegation. Mr Klees, could you just point out to me what section of the act gives the PPAO a mandate for training rights advisers; I can't find it.
Interjection.
Mrs Caplan: I think people would have more comfort if the mandate was in the act. If you want to bring in an amendment, I'd support that.
PERSONS UNITED FOR SELF-HELP, NORTHWEST
The Chair: We have the Persons United for Self-Help in northwest Ontario; Mr Rick Elms, president. Good morning. Could you identify everyone who will be taking part; this is for the purpose of Hansard.
Ms Marilyn Warf: Rick Elms is president of PUSH Northwest, Janet Turner is a community development worker with PUSH Northwest and Floyd Balius is a member. I'm Marilyn Warf, regional director.
Thank you very much for the opportunity to address this group regarding Bill 19. Just for background information, PUSH, Northwest is an organization of people with disabilities. It is of great concern to individuals with disabilities because they are the ones deemed vulnerable in this bill. This is the voice of those consumers. Our presentation doesn't refer to specific sections or subsections, it won't be technical, it will be our opinions of what the impact is for people with disabilities regarding the information that is in Bill 19. These are the people who are deemed vulnerable, and included in that as well are seniors, who become vulnerable due to circumstances relating to aging.
Beyond our first impressions is the fact that we don't believe this bill is what's quoted, that the act creates a presumption of capacity for all persons. We believe Bill 19 will make it easier to obtain an incapacity assessment. We believe this bill makes more people vulnerable under conditions for substitute decision-makers and makes it harder to reverse a decision. Rather than capacity review, the bill refers to an appeal to reverse an assessment, so we're looking at a lot of general comments regarding the bill and some specifics regarding incapacity.
You will hear from individuals with psychiatric disabilities with their consumer organization that's presenting later in the day.
It was the opinion of some people that the previous Advocacy Act, although it did address some of the same things we're talking about with the companion legislation, in some small ways gave too much absolute power to the person with the disability themselves. There was some concern about that and there were some groups that spoke to the government about that. I think that was considered prior to the drafting of Bill 19, but it's our opinion that it's gone too far the other way -- that there is no balance, it's lost its balance, it's too far in the hands of caregivers and substitute decision-makers without the individuals themselves. That was certainly addressed in the previous presentation, where they were saying, don't assume that a person with a disability doesn't have the capacity to make those decisions when they have the respect given them to accommodate whatever their disability is and the time to think about and be given the information regarding their own choices in relation to their own care, their own property, or whatever it is.
We do need an Advocacy Act of some form with consent and substitute-decision-making components in it, but we need independent community-based rights advisers and advocates to go with it. So information provided in this presentation, and many more that I'm certain you'll hear across with your consultations -- it's really a very big fear and a very real fear that those who are vulnerable will be more so under this bill.
Three key areas concern us. The legislation eliminates independent advocates and rights advisers who could provide information about rights to vulnerable people and assist them in asserting those rights. There is an assumption that the family and paid caregiver will always act in the best interests of vulnerable people, justifying the removal of the accountability mechanisms. There is also a concern that the legislation makes it easier for someone to gain control over all of a vulnerable person's decision-making rather than working with the vulnerable person to allow them the greatest degree of autonomy possible.
Bill 19 will have significant impact on the lives of vulnerable persons like those with disabilities and seniors. Bill 19 will have an enormous impact on the lives of vulnerable people. It will eliminate fundamental rights and protection intended to ensure that people could retain as much autonomy as possible in their lives.
The government describes Bill 19 as a way of getting the government out of the lives of citizens and returning decision-making to the families when in fact the changes will mean that vulnerable people will have the government more able to have a controlling role in their life. They've lost some of those rights to have their own voice heard in relation to decision-making. Of paramount concern is the definite possibility of an increased risk of abuse by vulnerable people.
Bill 19 removes reference to advocates and rights advisers who, under the old Advocacy Act and the companion legislation, provided those rights. There will no longer be advocates and rights advisers to help vulnerable people understand their rights and express their wishes. Gone are plans to develop systemic advocates to promote the rights of vulnerable people and identify and try to remedy situations which put vulnerable people at risk.
Under Bill 19 the only situation where rights advisers will be permitted is in psychiatric facilities. It talks directly about psychiatric facilities, and we really weren't sure, because of the wording of the bill, whether that also means in the psychiatric wards in the general hospitals. Do they not have the same rights? Does it have to be within a psychiatric facility? I don't know whether you realize -- I'm sure some of you do -- that we are in that whole situation right now where we're looking at mental health care and planning for that. What does Bill 19 mean about rights advice, even in facilities, when they change?
The other concern of ours is, does this mean that the government assumes that the only time people are vulnerable or need rights advice is when they're institutionalized? What about situations that arise in day-to-day living? Where are the rights advisers for the general public? Rights advisers help families too. It's not just the individuals rights advisers help; it's families that are involved in situations that happen when you get into an incapacity assessment or capacity assessment. So don't just think of it in terms of an individual; it's a broader thing than that.
Without community-based advocates who take responsibility for those who are vulnerable in the community, where do they go? Who looks after those individuals? In northwestern Ontario, we have a lot of individuals who come into this area -- examples are to cut timber or to work in the lake systems -- and they end up staying here. They don't always have the support mechanisms of family. This bill assumes that everybody has support mechanisms that always will look after them and look after their best interests. That's not true.
We had a situation just recently where we had very vulnerable men, older men who were those kind of people who were without family supports. They weren't living in adequate living conditions. They were not healthy because of being improperly fed. Nobody was looking after them. They were vulnerable, very vulnerable. Nobody was there to help them and they actually died in a rooming house fire. Where is Bill 19 covering that extent? Those people are not institutionalized. Without community-based advocates, where is the assistance for those people who are vulnerable, not necessarily through disability or aging but in those other situations as well?
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Under capacity assessments, the capacity assessors will only be required to inform a person being assessed regarding the purpose of the assessment and the consequences of a finding of incapacity. Capacity assessors under Bill 19 are not obligated to inform the person being assessed of their right to refuse the assessment. There's no obligation under Bill 19 to inform the person of their rights to challenge the finding of incapacity, either at the Consent and Capacity Board or in court, depending on the circumstances under which the assessment was done.
Where's the right of the individual for information regarding a procedure that can have profound repercussions? If we're setting this person up in a situation where whatever the finding is will greatly impact their life, where are the advocates and where are the rights advisers outside of those institutional care settings?
Bill 19 must include a directive for informing individuals of their rights to refuse a capacity assessment. So although you have instructions, you don't have the guidelines, you don't have the accountability built into this bill.
Under the statutory guardianship division, on the finding of incapacity the vulnerable person under Bill 19 no longer has an opportunity to prevent statutory guardianship by objecting. This means that the public guardian and trustee becomes the statutory guardian of a person with complete control over all of their property as soon as they receive a capacity assessment that the person is incapable. Bill 19 removes the requirement that the vulnerable person have an opportunity to meet with the rights adviser before the public guardian and trustee becomes their guardian to ensure that they understand the implications of statutory guardianship and their rights.
Instead, Bill 19 simply requires that the PGT inform the person "in a manner that the public guardian and trustee considers appropriate" that the PGT has become statutory guardian and that they may apply to the Consent and Capacity Board for a review of the assessor's finding that they are incapable. The incapable person cannot terminate a statutory guardianship without a court order or another capacity assessment. With the elimination of advocates and rights advisers, how will a vulnerable person know that under Bill 19 they are required to object to a guardianship order?
Under Bill 19 there is potential for serious invasion of privacy for the vulnerable person by specifying persons to whom personal information about vulnerable persons may be disclosed without their consent and possibly without their knowledge. Those are two key components. The bill is not tight enough in requiring anybody to make sure that you know that I'm going to go and check out what your private information is without your knowledge and without your consent. Those are two key components that, if you're going to write any kind of legislation to protect vulnerable people, have to be there.
Under Bill 19 guardians will now be free to use restraints and monitoring devices without any accountability or even provide information pertaining to the intended use of restraints.
Under Bill 19 a person who is paid to provide health care or residential social or support services to an incapable person can be appointed as the guardian of the property of the vulnerable person. This sets up a very definite conflict of interest situation with a person who has the power to make decisions about how to spend a person's money, where they live etc when that decision-maker will be the direct beneficiary of those decisions that are made.
Bill 19 is assuming that all paid caregivers are acting in the best interests of the individuals. What if the individual is non-verbal and living in a support service living unit and a paid caregiver is the communicator for that individual, but the paid caregiver is also the abuser? Who speaks for the vulnerable individual? So you've got a person who's non-verbal living in an SSLU with a paid caregiver who is the abuser. Where is the help? You don't have anything that supports that individual. That person is vulnerable to start with due to disability and you haven't protected that vulnerable person under Bill 19. There is nothing in that legislation that provides anything that would guarantee that person has a place to go for their own protection.
Bill 19 gives paid caregivers priority over the public guardian and trustee as the court-appointed guardian. This allows for the creation of a high-risk situation for vulnerable persons, particularly in light of the elimination of rights advisers and advocates, who may be able to identify abusive caregivers. The elimination of accountability for financial reports and the use of restraints makes the situation even more of a dangerous one for those who are vulnerable. So it's easy to get control, it's easy to get access of money, it's easy to make decisions and it's really dangerous. You've put vulnerable people at a higher risk because you haven't covered all the holes in the legislation.
If the paid caregiver has rights for decision-making and care and property, who's going to intervene when the paid caregiver decides to spend the individual's money, not on more services but on a fancier apartment or trips or dining out? You've given that person total autonomy over the care and the decision-making for spending that money. If you think it's unrealistic to think that those situations happen, it's not. It's more prevalent than you would like to believe it is; it's not a realistic expectation to think that everybody who is in that position is going to do it appropriately, with the best interests of those individuals coming first. The fact is that this situation is a very real concern for persons with disabilities. I think that as the understanding of this bill increases, you will find far more feedback from seniors when they realize that their vulnerability is increased under this bill too.
Powers of attorney for property and personal care. The changes to this section dealing with the powers of attorney for personal care and property now allow an individual to specify what criteria are to be used to determine when the power of attorney comes into effect, and if they choose, who should assess their capacity. Of concern under Bill 19 is the elimination of any requirement or obligation on the person who has the power of attorney to explain to vulnerable individuals personal care options and decisions and inform them that they have the right to object to any decision.
We're not playing fair here. Unless it's legislated, you don't have the clout. The legislation doesn't specify what the requirements are to inform, and make sure that people know it's not going to happen unless it's legislated. We'd like to believe that people are always going to do good things, but again, if you're going to build it to cover people who are vulnerable, write something into the legislation that makes it mandatory. With those kinds of requirements, it means that vulnerable people may easily be excluded from the decision-making regarding their own care and may be treated against their will. It also takes away the autonomy of the vulnerable person and may lead to abuse by the person with the decision-making power.
Powers of attorney for personal care with special powers. Under previous legislation, there were controls and systems in place to attempt to ensure that the use of force and confinement with this type of power of attorney was not abused. There was also provision for the vulnerable person to challenge a capacity assessment. Bill 19 removes all procedural protection for the vulnerable person, not just for future powers of attorney but for those that have already been validated. Bill 19 removes the requirement that a capacity assessment be completed prior to the power of attorney coming into effect. People who thought they were protecting their vulnerability by preparing powers of attorney are in fact very vulnerable due to the gross lack of accountability. For those becoming decision-makers under Bill 19, as a final step in increasing the vulnerability of individuals, the person granting the power of attorney must waive his or her right to challenge a finding of incapacity at the Consent and Capacity Review Board. The provisions under Bill 19 basically eliminate the right of the grantor to be presumed capable and increase the possibility that the power of attorney will be abused.
There is great need to provide public information as to the status of the power-of-attorney kits which were widely used under the previous government. People need to know if their written wishes are still valid in light of the repeal of the Advocacy Act, Consent to Treatment Act and Substitute Decisions Act. People also need to know the reality that their potential vulnerability is increased under Bill 19. What we're talking about there is that there was wide distribution and use of the power of attorney kits that came with the other legislation. Is that in place under Bill 19? Is it safe? Does it have to be rewritten? Should we redistribute? Should they be somehow filed in a different manner? We're not sure, that's not clear and there's not a lot of public information regarding that.
Breach of privacy, public records. The government will be allowed to create public records of information relating to the guardians of property and the person, as well as the attorney for personal care and property. It's a total invasion of privacy to allow this type of information to become public record. I think you have more protection under criminal activities than you do under this component of Bill 19. If there is a need to disclose the fact that there's a substitute decision-maker for a person, then it should be done so only when there's a compelling need to disclose the information, and under strict legislated criteria for the release of such information. Unless you tighten it up, it's open for abuse and it will not be respected; and if you don't respect it, the person is not respected.
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To give you a bit of background, for people with disabilities -- I don't see anybody with a disability on your panel. You're talking a great deal about legislation that impacts directly on their lives. I'm accompanied by three people whom you're talking about who are very vulnerable to other people making decisions on their behalf. I would certainly hope that at some point the government consults with the people who have their lives impacted by this kind of legislation.
Bill 19 permits health care providers regarding the Regulated Health Professions Act or any person providing health care or residential social training or support services to disclose personal information, including medical information, about a vulnerable person. Information may be given to a capacity assessor, to persons who have made or stated in writing that they intend to make an application to appoint a guardian of property or for personal care, or to the public guardian and trustee.
Why is your right to privacy violated when you're deemed to have become vulnerable? When you're most vulnerable, you're more vulnerable because you've lost your right for privacy. Do you lose fundamental rights at a time when you need them the most? There's nothing to ensure that a person is knowledgeable about the violation of their privacy or any opportunity for them to challenge this violation. This has great potential for the abuse of power, and there's no justification for access to this kind of information prior to any court hearing. In that case, you can see having to provide that information, but until such point as there is a real need for that kind of information being released, people have the right to that privacy, and it's not protected the way Bill 19 is written.
Under the expanded definition of "family," the scope of the Health Care Consent Act goes beyond that of the Consent to Treatment Act and encompasses the admission of a person to a facility even when no treatment is necessary. This act also allows for consent in areas of personal assistance plans and activities of daily living. The power for decision-making under this act is given to a person holding power of attorney, a spouse or partner, a child or parent, followed by other members of the family. The problem with this section is the broadened definition of "family" to include anyone related by blood, marriage or adoption. There's no definition of how close the relationship needs to be. For example, it's not clear whether the brother of a sibling's spouse would be a relative under this definition. So if you're going to define a person who is designated as a decision-maker, let's make sure that's tight enough so that it doesn't become someone who doesn't know anything about an individual who's very far removed.
Under Bill 19, there's no provision for the relationship of those who fit the definition of "family." Under previous legislation, there was a requirement that persons acting as substitute decision-makers make a statement that they had been in contact with the person within the last 12 months and believed that the person would want them to be their decision-maker. There's no such provision under Bill 19. Even the word "contact" left much to be desired in the previous legislation, but under Bill 19 there's no requirement at all for the type of relationship the family members have, only that they fit the definition of "family." This is a critical condition of who has the right to make decisions for an individual, particularly in light of the reduced accountability and increased power given to the family under Bill 19.
How, under Bill 19, can individuals be sure that their wishes that were declared when they were capable are being followed once they are vulnerable? During preliminary discussion regarding the implications of the bill, a young woman involved in a meeting was absolutely appalled by that section of the legislation. This is a young woman who is very competent, who works in public radio. We were talking about doing public information sessions regarding Bill 19, and she went: "Oh, my God, that's me. I am very vulnerable under Bill 19. I'm totally healthy right now; I'm very capable, but should I become incapable through accident or disability -- I haven't seen my family for 10 years. My friends know what I want; my friends know my wishes." Under this legislation her family, and it could be anybody who fits that description of "family," could come in and make decisions they thought were appropriate and they don't even know this young woman any more, but her friends would not be allowed to do that under the way this bill is written.
There's a concern for us in discrimination against persons with a disability. Under Bill 19, health care practitioners are allowed to treat capable people without consent if they cannot communicate because of disability or language. If you haven't noticed, Janet's deafened. She's reading my lips. It's an oral translation, and she's extremely good at lip-reading and you would forget that she's deafened. But in a situation where she's been in an accident, she is not going to be calm enough to be able to read lips; if someone has a mustache, it's all over. Or say they have a speech difficulty themselves: Janet's non-communicative.
Does that mean that she, as a very capable, intelligent person, loses her ability to make her own decisions because a health care practitioner no longer has to accommodate? What about those who are culturally deaf and do not lip-read? Are you going to call an ASL interpreter in or are you just going to assume that this person no longer has the right to make her own decisions because she can't communicate? How are you going to cover those bases? It has not been addressed. You're not addressing people with disabilities under this legislation. Those are real people, very intelligent people who have the right to make their own decisions and they have not been addressed in this bill at all. There's no provision at all for accommodating the disability, and it's a violation. Because the practitioner is covered under the common law for any liability relating to decision-making, challenging a decision made for individuals in that situation would be extremely difficult.
The HCCA does not make any requirement that persons found to be incapable be told that they are being treated as persons who are deemed incapable or that they have the right to challenge the assessment or that they may apply to the Consent and Capacity Review Board to have someone other than the one who is acting in the role of decision-maker replaced by another person. Who is going to be out there to tell her that she doesn't have to put up with whoever is making the decisions? Again non-verbal; it's supposed to be an indication of not wanting the treatment that is being offered, but where is the person to advise that individual that she doesn't have to do that, and where is the individual to come in and be the rights adviser or the advocate?
How is the young woman in the previous scenario to know that she does not need to have an absentee family member reappear to make decisions on her behalf? Where are the rights advisers? How can this legislation pretend to be protection for those who have become vulnerable? We haven't made any provisions in this at all. If you're going to have a bill that covers this kind of stuff, you have to do some community awareness. We know about it because we're dealing with people who are deemed vulnerable. What about the general public? What information have you got out there to tell the general public what their vulnerability is under this bill as well? They're not going to address it until they're in the situation, and with no advocates and rights advisers, who's going to step in and tell them? They've never known about this before, nor are they going to have anybody to address that with them.
Many people in the government have said that the outcry against the provisions of Bill 19 is only the response of special-interest groups. Persons with a disability and seniors are not special-interest groups. They are the fibre of our society. So when you're looking at this legislation, don't think that it only applies to a very small segment of the population. This bill has far-reaching implications not only for those who are vulnerable now, but for anyone.
Just to give you a bit of a scenario: If, say, you and your wife are in a car accident and your wife dies and you sustain head injuries so that you are non-verbal, and it is determined that you are incapable of making your own decisions, you are now vulnerable under this bill. The same scenario can be repeated in cases of stroke or other injury. In a case where you are declared incapable and you are vulnerable, you'd better hope that your family members will make the decisions on your behalf that are aligned with your wishes.
What if the decision-making was, under the definition of "family," given to an estranged child or another family member? Would your wellbeing be the priority? Or when there are estates involved, does money become the motivator rather than the priority for health care? We'd like to think that isn't out there, but that's not the real world. In a perfect world that would be the issue, but we don't live in a perfect world and the lack of accountability in Bill 19 allows too much room for the abuse of power.
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A scenario that would be possible under Bill 19 is that a son declares he's intending to have himself appointed as the guardian for his aging mother. She's aging and has taken mood-altering drugs during the sickness and death of her husband. The son has access to personal information. The scene is set for the son to declare himself as his mother's decision-maker for property and care. The mother is moved out of her luxury apartment to a one-bedroom apartment. The mother is told she spends too much money on her annual trip to Florida and the son refuses to give her the money. Who is going to advise the mother that she has to take her son to court to overturn him being appointed as her decision-maker and guardian? That's our impression of the degree of vulnerability even for the general public under this bill.
We believe that Bill 19 was written with a bit of a Pollyanna attitude that everyone who is a family member or caregiver is always acting in the best interests of the individual. Reality tells us differently. Statistics show that 40% to 45% of abuse is caused by a family member and that another 40% to 45% is caused by caregivers. Those are shocking statistics, but what is even more shocking is that Bill 19 was written supposedly to protect vulnerable people when in fact it has removed the independent advocates and rights advisers and rendered vulnerable people even more vulnerable.
How can Bill 19 eliminate the role of trained advocates and allow medical staff to be advocates? Would the rights and the best treatments be awarded to individuals or would the issues relating to the medical facility and biases enter into the decision-making, and who would make that decision-maker accountable? We heard that in the previous presentation. That is a very real concern. That's coming from those health care practitioners in those facilities and they know the possibility is there.
If Bill 19 was intended to protect vulnerable individuals, it certainly missed the mark. If the intent was to allow situations where vulnerable people are more at risk for abuse by family and caregivers, it's hit the mark.
We would like more consultations with people with disabilities. That's not being done. We would like you to understand the situations, the realities and all perspectives of people with disabilities and seniors in relation to not just this bill but any bill that's coming down from the present government. Consult, then create the legislation.
The Chair: Your time is up. I thank you all for attending for your presentation. I understand the written submission will be forwarded to the clerk of the committee
PATIENTS' RIGHTS ASSOCIATION, THUNDER BAY CHAPTER
The Chair: The Thunder Bay chapter of the Patients' Rights Association, Prue Morton, secretary. Welcome. You have one half-hour including questions.
Ms Prue Morton: The Thunder Bay chapter of the Patients' Rights Association is a grass-roots organization whose members have encountered a wide variety of health concerns. We appreciate the opportunity to appear before you, and while congratulating the government on the overall intentions of Bill 19, we would like to comment on certain aspects of it.
I'd like to say that it was only by luck that we heard this presentation was taking place. There was one small notice, I believe, in the paper, just after Christmas when a lot of people were away. That didn't even say what date it was going to be in Thunder Bay; it just said there were going to be hearings in Thunder Bay, or it would be one of the places. I've talked to quite a lot of people who said they didn't know this was happening at all. So I think the PR of the committee could be improved to let people know.
The Chair: You can blame me, ma'am, because we attempted to restrict -- traditionally, some $20,000 or $30,000 was spent on advertising and I felt as Chairman that was a little much in the way of money and I did cut back on the advertising, so you can blame me for that.
Ms Morton: It may be a bit like from one bill to the other that goes from one extreme to the other a bit.
The purpose of the bill is to ensure that all people, particularly vulnerable people, can make their own fully informed decisions regarding their health and property, yet at the same time the bill has to afford protection to those who by reason of mental incompetence might endanger themselves or others. Obviously, these two objectives sometimes conflict and it is difficult to place limits on either without producing many bureaucratic, legalistic and expensive safeguards. The old bill had so many of these that it was extremely cumbersome, but in some respects Bill 19 has too few.
The Advocacy Act was a good example of top-heavy bureaucracy, but to repeal it without putting anything in its place leaves too many people at risk and ignores the wide public input which preceded it. Vulnerable people are sometimes abused and do need more protection than can be provided by community advocates with very little power.
A vague promise that the Ministry of Citizenship, Culture and Recreation will work with such groups and that priority will be given to dealing with abuse and neglect of vulnerable adults is hardly reassuring given the present government's preference for laissez-faire policies. It was the inadequacy of advocacy provided by government operated or government funded programs which led to the enactment of the Advocacy Act in the first place. Systemic advocacy is particularly necessary and particularly difficult for individuals or small groups to address since institutions are hard-pressed to maintain reasonable standards with the present cutbacks in funding. Already what is deemed acceptable would probably not always be tolerated for their loved ones by those with enough money to seek alternatives.
Patients' advocates in Ontario's mental hospitals are now independent of those institutions and to fulfil their function properly this still needs to be the case. They have been able to bring about changes for the benefit of all their patients because being on the spot and independent they can see more clearly and press more effectively for change without endangering their jobs. In fact, there should be independent advocates in all hospitals and long-term-care institutions, although not necessarily one full-time advocate for each. These measures could well be incorporated in the bill, and judging by the former presentations here, maybe their training and mandate could include rights advisers as well.
Instead of one Consent and Capacity Board there should be numerous ones appointed, but only paid when their services are required. This would obviate the need for expensive travel and should make hearings quickly accessible. It would also make unnecessary the unsatisfactory provision that a board can operate with only one member and that it can operate without a member present who has experience in evaluation.
The new Health Care Consent Act is an improvement over the Consent to Treatment Act which it replaces. However, there are several more safeguards which need to be put in place. One is where the bill states that emergency treatment can be given without consent if that consent cannot be obtained because of a language barrier or disability, although attempt must be made to find a way of communication and there must be no reason to believe that the person does not need treatment. Guidelines need to be developed to ensure that the attempt is adequate and that the reasons for lack of belief are firm.
Another instance is permission for the health professional to perform a treatment without first obtaining consent if he or she believes that the treatment can cause little or no harm. Without safeguards, this vague statement could be interpreted very differently by different professionals and sometimes the patient may receive psychological damage and other damage through the treatment which has not even been considered by the professional.
A third place in the bill which needs safeguards is where an evaluator may authorize an incapable person's admission to an institution without necessarily needing treatment. Relatives or neighbours may feel that frail people are not capable of looking after themselves safety and may persuade an evaluator to declare such a person incompetent, whereas in fact he or she is perfectly capable of deciding whether or not to take the risks of independent living. The power invested in professionals is apt to make them think paternalistically and therefore safeguards need to be in place to protect individual rights.
The ability of family members to become statutory guardians has been usefully enlarged by the amendments to the Substitute Decisions Act. We wonder if it's not possible to make provisions for non-related people to become guardians also under certain circumstances. For example, if a person has given power of attorney for property to a friend some time ago, when the power of attorney for personal care did not exist, and that person subsequently developed Alzheimer's disease or a stroke, for example, then in the absence of relatives that friend should be able to apply for the additional power.
Also, there are always going to be people who have not appointed anyone as their attorney and who unexpectedly become incapacitated and have no relatives able and willing to assume guardianship, yet some of these people will have devoted friends who could fill that role if suitable guidelines were developed, and sometimes they do know more than distant relatives.
Finally, safeguards need to be in place to see that these measures can be put in place quickly, without costing more than a low-income person can afford.
This bill should enable better treatment for a great many people. However, it needs a few more checks and balances and it should not be too difficult to add them. We hope that the government will agree and will take time to construct them carefully so that they do not prevent access to this treatment from being swift and efficient. That includes the amount of money it takes to challenge these things.
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Mr Marchese: Thank you, Ms Morton, for your presentation. This government has made it very clear -- during the election as well -- that it would repeal the Advocacy Act. It seems very clear now, unless otherwise stated by some of the government members, that that will remain that way and that the rights advisers are gone. I'm not quite sure how we convince the government members that we should restore some rights to individuals so as to make sure we protect individuals where there is a potential for abuse. I'm not sure we've been able to reach the government members so far, even though many of you have said over and over again that we need an Advocacy Act and that we need rights advisers.
Do you have any suggestions for the government members with respect to advocacy and with respect to rights advisers, as to how we might convince them that perhaps we should restore some of those rights?
Ms Morton: As I said in this presentation, perhaps if they provided independent advocates who could also be rights advisers in hospitals -- not necessarily one in each hospital because that might be economically impossible -- they could prevent it perhaps in hospitals, at least. I'm not sure if it would overload it to make them available to the general public as well, but it might be possible that way. At least in cases like northwestern Ontario, where everything is so far removed from anywhere else, it would probably be a good deal cheaper to do it that way.
Mr Marchese: Sure. But a number of people have said this with respect to some of your suggestions: Under the Mental Health Act, they still retain the power to have rights advisers in that case, and that's good, on the one hand. On the other hand, they allow the hospitals to determine who would give that advice, and a number of people, including the Thunder Bay Regional Hospital people who were here this morning, said that that's a problem --
Ms Morton: Yes, it is.
Mr Marchese: -- that it does constitute a conflict, and that should be addressed. There were some questions from Mr Klees with respect to that and how to deal with that. We think there's a possible conflict that needs to be dealt with. They should be independent. I suppose you're saying they should have a rights adviser in a hospital, let's say, whatever setting, but they should be independent from the hospital. Is that correct?
Ms Morton: Yes. It might be possible in a psychiatric hospital; I don't know the logistics of this, but it might be possible for the advocate to be a rights adviser as well, perhaps, which would mean one person instead of two, which would at least give people some independent resource.
Mr Marchese: Let me ask you something else, because this has come up often. What this bill allows is for paid caregivers to be guardians, and it gives priority to the caregiver over the public guardian and trustee as a court-appointed guardian. So we now have no rights advisers; we're not sure whether they will have them, in spite of what you and others say. We have no requirement to produce financial reports any more. We have the elimination of the restriction on the use of restraint. Does this clause worry you, that we would allow paid caregivers to become guardians?
Ms Morton: Yes, it does.
Mr Marchese: Can you tell us why?
Ms Morton: Really, you have said it very well; I'm not sure I can say it any better. If you're vulnerable, apart from anything else, you very often don't know about these things, particularly if you don't know there's any recourse that you can challenge it. It seems to me that a lot of very vulnerable people are not really in a position to know what's happening till too late.
Mr Marchese: That's true.
Mrs Boyd: On the issue of independence, the suggestion Mr Klees made about contracting with an outside organization and that solving the problem, we've had a model like that with the advocates for the developmentally handicapped, who were contracted, usually through Family Services Association members but some other agencies, to offer that kind of advice. When we did the consultations in working on the Advocacy Act, many of those people working as advocates came forward to say they were in a conflict of interest when the agency providing services was their agency. It is a fairly complex issue, and we need to think very carefully about that.
Conflict of interest, whether it's the conflict of interest for health care professionals around wanting to provide what they regard as the best treatment despite what the patient says; or conflict of interest in terms of property, which is of great concern where there is property -- often there isn't, but often there is; or conflict of interest when it comes to the emotional baggage that families may have, becomes a real issue. It's my sense that people don't really understand conflict of interest very well and how that can impact on a vulnerable person. Would you say that's true?
Ms Morton: I think that's entirely true. One of the problems is that a lot of safeguards were put into the old act, and they were so time-consuming and expensive that no one could lift hand or foot, practically, for ages, without spending a lot of money. Obviously, there's never going to be an ideal system, particularly in a legalistic society where everybody has to conform to the laws exactly.
Mr Clement: Thank you very much for your presentation and for your thoughts. It's very helpful to hear clear presentations such as the one you gave to focus our minds a bit. I want to cover a couple of things, some issues raised by your presentation.
I agree with you when you said the Advocacy Act created a top-heavy bureaucracy and that perhaps there are alternative ways of doing some good and achieving some justice. We are consulting with a number of groups, as many as we can, to try to come up with some creative ideas to do that. I thank you for your input on that.
I want to assure you that the Consent and Capacity Board can be regionalized -- it doesn't have to be one big board -- so there will be some opportunity for some regional input.
I also want to assure you that under the acts as presented, persons who are not relations but are friends can be made guardians, so it need not be strictly, in terms of hierarchy, a family member. So there is that possibility.
I want to come up a bit higher now and talk about the differing philosophical bases of dealing with this. Mr Marchese, in his usual way, has done an excellent job of presenting a particular philosophical view, and maybe he and I will just have to disagree. Having heard all the evidence the first go-round -- because there was a lot of input into the Advocacy Act in the first go-round -- there were two very clearly defined points of view. I do not mean to demean his point of view when I describe my point of view, which is that, by and large, friends and family who love the vulnerable person are able to deal in the vulnerable person's best interests in the best way; and by and large, persons who do not love that person, if they are part of the process, do not have the same stake, as it were, and might gum up the process rather than help the process.
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We're coming at it from that point of view. We want to give as much power as possible to the reasonable friend or family member who is acting in a reasonable way. But sometimes, as Ms Boyd has pointed out, they don't act reasonably. So what we need to do is set up a series of whistle-blowing techniques to ensure that in the minority of cases where vulnerable people are being handled in a terrible way, there are some checks and balances in the legislation. I want to get your comment on a particular section that may allay some of your concerns.
Under section 35 of the Health Care Consent Act it states very specifically -- page 85 of the legislation, for those who are reading along -- if I may paraphrase, that if the substitute decision-maker is making some very wrong decisions and the health practitioner is kind of scratching her head and going, "This is not in the best interests of the patient," that practitioner can appeal to the board. In fact, it says specifically in the legislation that the incapable person is a party to that appeal, so she's not cut out of the process if there's a bit of a bun fight over what's in the best interests of the patient.
That's just one example of a whistle-blowing section that allows a proper balance between the friend or family member who by and large loves the person but in some cases may not be acting in that person's best interests, and the health practitioner who's saying: "Wait a minute, this doesn't work. This is going to hurt the person, not help the person." Is that a way to look at this legislation that allays some of your concerns?
Ms Morton: It might be of some help, but if it were a property decision, it's likely that the practitioner wouldn't be involved at all, or quite possible they wouldn't be. There are several restrictions which have been removed; for example, any kind of vetting of the regulations that the person who's applying does have to be shown to be someone who really does have the person's interests at heart, and also that the witnesses have to specify that they believe the person to be capable for the power of attorney and so on. I think it just needs a few more regulations, which need not necessarily be very expensive, I don't think, to ensure that the people who are empowered are suitable.
Mr Parker: Maybe in that minute I can make one point, which is to reassure you on one concern you raised, and we've heard this concern before, about the capacity in the act to appoint a care provider as the substitute decision-maker. That causes you some concern, and we've heard it before, basically that we're putting the fox in the henhouse and that's where some of the trouble arises. The assurance I want to give you is that if a care provider is appointed as the substitute decision-maker by a court, the court has ultimate control over that relationship and the care provider is accountable to the court for the behaviour and conduct under that appointment. It's not quite as though the care provider is appointed and everyone walks away from the matter. There are very strict rules of accountability that would arise under those circumstances, and the matter would be appropriately supervised.
I just want to give you some reassurance on that point -- because I recognize it's a concern you have, and we've heard it from others as well -- that there is a strong line of accountability to the court when the care provider is appointed in that capacity.
Ms Morton: Yes. It's a rather legalistic accountability, though, and I doubt, if it were some kind of treatment which the patient wouldn't want and which the caregiver felt they had to approve because of conflict of interest, that it would ever come before a court.
Mr Michael Gravelle (Port Arthur): Good morning, Prue. I just want to mention that when we were aware the hearings were being held in Thunder Bay, our office, and I know Lyn McLeod's office as well, attempted to contact as many groups as possible. If our office didn't call you directly, I apologize, because we were trying to let as many people as possible know about the hearings being in Thunder Bay and wanted them to take advantage of the opportunity. I apologize if they didn't get to you, and we will next time. Thank you for all the good work you're doing here in Thunder Bay.
I apologize if I missed part of the discussion Mr Clement was having, but it's certainly an aspect that's been brought up, also by Persons United for Self-Help, PUSH: first of all, the definition of a blood relative, which probably does need to be defined; and the fact that there are many situations when a friend or someone you designate would be closer to understanding your needs and someone you'd be more confident with. I want to ask you to expand on the need for that, because the hearings are to try to bring together the best legislation possible to help people the most. My colleague -- Elinor, I read somewhere that you said that even with legislation, often you don't find out until it's actually in legislation whether it's working, so obviously you want to get as close as you can when it's put in legislation.
This aspect is important, the concept of a friend being able to be in that position to be a Substitute Decisions Act person. I want to ask you to comment on the importance of that, and the definition of a blood relative.
Ms Morton: This happens particularly with elderly people, where a lot of their very close relatives have died and anyone who is related is rather distantly related and not in close contact. I know several cases where they have got a close friend who should have priority, but you need to make regulations about this so it wasn't just a question of relatedness but also some kind of -- for example, I believe it's been cut out that they had to have been in contact with that relative fairly recently. I believe that doesn't exist any more.
Mr Gravelle: You could argue that it not necessarily even be in cases such as yours, but something that simply in terms of fairness should be in there.
Ms Morton: Yes.
Mrs Caplan: You raised a new issue that we haven't heard before, and it's hopefully one where the government will bring an amendment in. In the list of hierarchy, I think the point you're making is that where someone has designated an attorney for the purposes of property, that person should be considered before the public guardian and trustee for the purposes of guardianship. Is that correct?
Ms Morton: Yes, that's right.
Mrs Caplan: I think that would be a worthwhile amendment. It acknowledges that you thought about it before the law came in; maybe you didn't get around to -- certainly if you've decided on someone for the purposes of an attorney under the Substitute Decisions Act for your property, it would be reasonable to assume, before you bring in the office of the public guardian and trustee, that that individual should be able to make decisions for you when it comes to personal care. It's a new concept.
Ms Morton: Yes. We have been in touch with people who have been in that situation, and they've said: "Why can't we be responsible for this? We are the people who were actually dealing with that particular person."
Mrs Caplan: Of course, it would be better if they executed a new power of attorney, but there are many people at this point in time who --
Ms Morton: It's too late.
Mrs Caplan: Exactly. I think that in the hierarchy, that would be a reasonable amendment.
You raised many things, and the one I'd like to go back to is the elimination of all the checks and balances. While Mr Clement read out one section for those people on treatment, I'm wondering whether you think the office of the public guardian and trustee should be able to question whether a power of attorney was made fraudulently or under compulsion. If there is evidence to suggest there is, there is nothing to allow the public guardian and trustee's office to investigate, even. Do you think they should be able to do that, to protect people who perhaps were coerced into giving a direction?
Ms Morton: It sounds like an excellent idea. I hadn't thought of it, but it sounds like something which would be really useful.
Mrs Caplan: It seems to me, if you're going to remove all those legalistic checks and balances, that where there is a question of coercion or of a power of attorney done in a really questionable way, at least they should be given the opportunity to investigate and seek out evidence from other family members or friends to overturn that. Right now they have no authority to investigate.
Ms Morton: And perhaps people could write in to the office of the guardian and trustee and say, "We have this concern." People have nowhere, really, where they can write in or phone and say: "Look, there is this problem. What do we do about it?"
Mrs Caplan: In fact, if you have no other place, that letter or phone call today does no good; they have no power to investigate, as I understand it.
Interjection.
Mrs Caplan: They do?
The Chair: Thank you, Mrs Caplan.
Mrs Caplan: I would like to have the question answered. Apparently the ministry says they do have the power to investigate.
Ms Trudy Spinks: Section 27 and section 62.
Mrs Caplan: That's under the Substitute Decisions Act? That's very helpful. Thank you.
Mr Ron Johnson: Great idea, Elinor. Thanks.
The Chair: Thank you, Ms Morton, for expressing your concerns before the committee.
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Mrs Caplan: I have a question that can be easily answered. Last week I asked who had carriage of this bill. I was told it was Mr Turnbull. I note that he is not --
Mr Clement: Tilson.
Mrs Caplan: Mr Tilson, as the parliamentary assistant. Where is he, and since neither he nor Mrs Johns is here, who is carrying this bill for the government? How do we get questions answered?
Mr Parker: I will, Elinor.
Mrs Caplan: Why don't you tell us?
Mr Parker: I just did.
Mrs Caplan: So you're carrying it in what capacity? As the chairman of a committee?
Mr Parker: I'm sitting in for David Tilson.
Mr Clement: Subbing in.
Mrs Caplan: Are you the sub on the committee or do you have carriage of the legislation?
Mr Parker: For all purposes of these proceedings, I'm David Tilson for the next two weeks.
Mrs Caplan: That is very unusual.
Mrs Boyd: Mr Clement is actually parliamentary assistant for one of the ministers involved.
The Chair: Yes, Mr Tilson is the parliamentary assistant, as you know, and he is on holidays.
Mrs Caplan: I understand that. I understand that Mr Parker is the sub for Mr Tilson on committee. I'd like to know who is carrying --
The Chair: He is not the sub. Mr Parker is a regular member of this committee, and he is carrying the legislation.
Mrs Caplan: He has carriage of the legislation on behalf of the government?
The Chair: Yes.
Mrs Caplan: Thank you. I appreciate the clarification.
ONTARIO MEDICAL ASSOCIATION
The Chair: Our next submission is from the Ontario Medical Association. Dr Warrack is the president of the Ontario Medical Association. He is accompanied today by Dr Ken Arnold, who is secretary of the Thunder Bay Medical Society, and Ms Barb LeBlanc.
Dr Ian Warrack: Thank you, Mr Chairman. I guess I don't really need to repeat what you just said, so I don't need to introduce ourselves.
The Ontario Medical Association represents Ontario's 23,000 physicians in economic and policy matters. We appreciate the opportunity to be heard by the justice committee today and express our support for the general thrust of Bill 19. Most of our comments will focus on the practical issues around consent to treatment, but we will also comment briefly on advocacy and substitute decisions.
I'll start my comments today by acknowledging that the current Consent to Treatment Act does the job the former government intended it to do. It creates a legal framework to protect incapable people from receiving dubious treatments from malintentioned health care providers at the behest of equally nefarious families. Unfortunately, the government apparently believed that the way to deal with the bad apples, be they practitioners or families, was to cast a legislative net so wide that it would capture each and every encounter with an incapable person. Our experience suggests that this approach hasn't worked. In fact, it has created backlash in the broader medical community because the law is so blatantly anti-practitioner and anti-family. It is also highly impractical.
I'm hopeful that the new Health Care Consent Act will remedy these problems, and believe that one of the most significant amendments in the new act is the introduction of the purpose section at its start. While the Consent to Treatment Act has an underlying note of suspicion towards families and providers, the new Health Care Consent Act starts by outlining some very positive values. The OMA believes that the purposes of the act as set out in section 1 create a balance between patient autonomy on one hand and a patient's need for timely care on the other, a balance that is lacking in the current law. We are pleased that this balance between rights and needs is reflected throughout the body of the act.
The result is that Ontarians will enjoy access to a rights tribunal for a wide variety of purposes and the state removes itself from the doctor-patient encounter. The OMA strongly supports this direction and is pleased to see the removal of the rights advice provisions of the legislation and the repeal of the Advocacy Act. The OMA recognizes the need to assist vulnerable people and agrees that society should strive to enhance their autonomy and dignity. However, we don't believe the current system meets those objectives. We would encourage government to hold firm on its resolve to move away from a costly and adversarial rights-based system, and suggest that attention be directed towards systemic advocacy issues.
Dr Ken Arnold: There are a number of provisions in the current Consent to Treatment Act that make it unworkable in practice. I have not been involved in the legislative process for either Bill 19 or the previous legislation, but as a family physician here in Thunder Bay, I can state that my colleagues and I find the Consent to Treatment Act to be complex, intrusive and, in some cases, counterproductive to good patient care. In reviewing the new Health Care Consent Act, I notice several things that will help me provide good medical care within the bounds of the law.
The first is the removal of mandatory rights advice. Neither my colleagues nor I are comfortable with providing a US-style Miranda warning to our patients advising them of their rights. This is simply not appropriate within the doctor-patient relationship.
The second is the work done to clarify that minor variations to a treatment or a treatment plan are legal. This makes good clinical sense, and I support it. Similarly, I think the addition of the definitions for "plan of treatment" and "course of treatment" are a useful clarification, as is the exclusion of non-risky treatments from the definition of treatment. I also believe that acknowledging the right of substitute deciders to make decisions around withdrawal and withholding of treatment is useful and brings the law into line with common practice. End-of-life decisions are difficult for families and health care providers in any circumstance, but they are made much more so by worries that one might be inadvertently contravening the act.
I am hopeful that the changes introduced to the consent scheme through the Health Care Consent Act, in addition to some of the positive features of the initial Consent to Treatment Act such as the hierarchy of substitute deciders, will enhance my ability to provide appropriate and timely care to my patients. Unfortunately, the current law has not been written with real-life practice in mind, and physicians have found it difficult to comply with its requirements.
Dr Warrack: In addition to solving some of the major issues of concern to physicians in their day-to-day practice, the new Health Care Consent Act fixes a number of smaller problems or omissions in the existing act. Examples include the de-linking of admission to long-term-care facilities with treatment, improvements in the substitute decisions hierarchy, changes regarding the Consent and Capacity Board, and removal of the rigid rules for the assessment of capacity.
I would now like to raise a few issues for the committee's attention. The OMA believes the introduction of the hierarchy of substitute deciders under the Consent to Treatment Act was very useful, and we believe it should be expanded to apply to all treatment, whether covered under this act or common law.
I am concerned by comments from some groups that government has introduced age limits for capacity into the act. Our reading of the law does not suggest this, and we would not support this notion. We believe it is important to preserve decision-making rights for capable adolescents. Another area of concern also related to treatment of young people relates to conflict between the Health Care Consent Act and the Child and Family Services Act. The conflicting provisions affect only a small number of adolescents, but these kids are very troubled, and even though they might be considered capable under the Health Care Consent Act, they are often lacking the insight necessary to begin treatment. We would ask that the Health Care Consent Act contain an exemption to treatment initiated under the Child and Family Services Act. This could be accomplished by removing subsection 84(2) from the act.
The next comments I'd like to make deal with the Substitute Decisions Act. The OMA is supportive of government's attempts to reduce the cost and complexity of the processes around powers of attorney and guardianship; however, we are still concerned that the capacity assessment process is unnecessarily bureaucratic. Many physicians are well trained to perform capacity assessments as part of their regular work. The week-long training required to become a designated capacity assessor under the Substitute Decisions Act serves as a disincentive for physicians to become involved.
A second issue under the Substitute Decisions Act involves the new streamlined process for activating powers of attorney for personal care. While the OMA supports this move, we wonder whether physicians will be expected to verify such documents and what the extent of their duty to inquire would be.
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Our last point regarding the Substitute Decisions Act relates to the new provision which allows disclosure of patient information to the public guardian and trustee, capacity assessors and to persons who have made application to become a guardian. The OMA recognizes and supports the need for this provision in order to permit appropriate sharing of patient information but believes the clause should be strengthened to ensure that practitioners recognize that disclosure is at their discretion and relates only to information that is relevant in the circumstances.
In closing, the OMA would like to commend government for moving to make much-needed changes to the consent, advocacy and substitute decisions package. The OMA hopes that the introduction of clinically sound principles around consent to treatment will enable us to move beyond the paralysis created by the existing act to a new model that is designed to facilitate appropriate treatment while recognizing the rights of individuals to question decisions about their incapacity.
One final comment I'd like to make relates to implementation of the new laws. The OMA would urge government to provide the appropriate time and resources necessary for education regarding the legislation. There is bound to be confusion, and we need to try to minimize it to the greatest extent possible.
Thank you for your attention. We'd be pleased to answer any questions you may have.
Mr Klees: Thank you for your presentation. I would like to get your thoughts on a matter that several presenters last week and I believe Mrs Caplan as well suggested, that we should provide, by legislation, the requirement for colleges to implement specific guidelines with regard to rights advice. I'd like your comments on that.
Dr Warrack: As an association, we would prefer that the colleges would provide the guidelines for rights advice rather than it being in legislation. Barb?
Ms Barbara LeBlanc: In terms of the rights advice provisions, the first thing that we'd probably have to say is that a lot of our membership don't believe that physicians have a role to play in rights advice. The OMA hasn't taken a formal position, but generally the view is that as health care practitioners they're inclined to be spending their time providing care, not quasi-legal advice.
I suppose the other issue is, whether or not there's rights advice is really a political decision. If that decision is taken and rights advice is part of the scheme, then I think the OMA would rather see the College of Physicians and Surgeons responsible for setting standards than having a rigid legislative format.
Mr Klees: Just to follow up on that, can you be a little more specific for me? I think what we're trying to get at here is what your position would be. Would you be in favour of or opposed to legislation requiring the colleges to establish the guidelines and to enforce them?
Dr Warrack: Yes.
Mr Klees: I'm not asking the question right. Are you opposed to it or in favour?
Dr Warrack: Oh, sorry; in favour of the college being involved rather than it being mandatory under the act.
Mr Klees: You have no objection to a legislation requirement for the colleges to provide those guidelines?
Dr Warrack: No, I have no objection to that.
Mr Klees: Okay. I'd like to move on to another question relating to the definition of "treatment." There has been some concern expressed about the exclusion of treatment that in the circumstance poses little or no risk of harm. There was some suggestion that a practical way of dealing with this concern is perhaps to allow the physician to opt in to the act given certain circumstances. Do you agree that this would alleviate some of the concern around this definition of "low-risk treatment"?
Ms LeBlanc: What do you mean by "opt in"?
Mr Klees: In other words, right now the way the term "treatment" is defined, it actually excludes low-risk treatment. Under circumstances, it's been suggested that perhaps a practical way of dealing with this would be to allow the practitioner to opt in, to actually place himself under this definition.
Dr Warrack: You mean still -- what?
Mr Klees: So he would still be covered under the act.
Ms LeBlanc: I guess it appears that what you're doing is giving the provider discretion as to whether or not they want to access the hierarchy and so forth. The way we've approached that is just a little bit different, and that is to leave the exclusion the way it's written and to suggest that in section 18, when you're outlining the hierarchy, you include not only treatments under this act but treatments under common law as well. Same idea; I guess a different approach.
Mrs Caplan: I appreciate the clarification. The concern has been raised that there's no consistent obligation. My view was always that it could be and should be the colleges which actually establish that, through standards of practice. However, one concern has been raised, and that is that social workers are not under the Regulated Health Professions Act, and so an obligation by providers to inform the patient that they've been deemed incapable and inform them of their rights would cover social work but would also allow the colleges then to establish that as part of their standards of practice under the Regulated Health Professions Act.
That was the debate and the discussion that we've had around here as to whether or not there should be that obligation for all providers. But as far as I'm concerned, there's never been an intention that in fact we should interfere with self-governance; I've felt we should not and that it should be the college's role to determine how to proceed to do that individually with the different professions. I wanted to clarify; there wasn't a question there.
I did have a question as it related to your concerns about privacy. We've had an assurance from the government that it will be bringing forward amendments that the privacy commissioner is recommending, which I think will address the concerns you have. However, you've approached it from the practitioner's need to have confidence about disclosure. One of the other concerns that we had was that it could be any person. I don't have a problem with disclosure to the office of the public guardian and trustee, because it's covered by the freedom of information and protection of privacy legislation. Similarly, I think the assessors would be covered if they were connected with the PPAO, which is one of the reasons that I want them to be involved not only in training but also in supervision and coordination. The concern that I have is that anyone not covered by that legislation would have access to information, because I think that also would put the doctor or the provider in a terrible situation of feeling that the law allowed them to release it. So it's a safeguard to the providers.
Dr Warrack: As you may know from other bills, we have a little concern about privacy.
Mrs Caplan: Yes. My hope is that we will see those amendments before the end of the committee so that organizations such as yours would have an opportunity to review them and see if they do solve the problem.
Do I have time for one more question? Actually, there are two more if there's time. One was on what the effect would be of the removal of subsection 84(2), and that's a question for the government to answer, whether it would accomplish your concern or whether it actually goes further than that. So the question that I have for you has to do with the risk of harm. My concern there is that unless we see an amendment that would allow the act to apply where there is low risk and you don't have consent; in other words, on those -- I think Mr Klees raised the issue. It's not whether the physician could opt in to the act, it's whether or not there could be a determination that the act would apply to those low-risk procedures, because I think you've foreseen what others have foreseen, and that is that where a person comes in and maybe is just fearful of even the most minimal, low-risk procedure, it could develop into something far more serious than that. I think that's the example of the unfortunate inquest that's being held.
I wondered if you'd like to just talk about that a little bit more and how you think that could be accomplished, whether the act should apply to everything or whether there's a mechanism that you foresee that would allow a physician to say, "Look, I think the act should apply in this case, and even though it's low-risk, we should have somebody here to help us"?
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Dr Warrack: I think it's very difficult to define what is low-risk. That's the biggest problem. Pretty well everything that we do -- potentially, giving an Aspirin to somebody for some people is a risk. Walking across the street is a risk. So I guess the definition is or the real problem is to define "low-risk." We would presume that anything that we don't anticipate is likely to have a high incidence of adverse effects is probably -- the problem is how intrusive is this going to be.
Mrs Caplan: That's the concern.
Dr Warrack: I know.
Ms LeBlanc: We're supportive of clause (g) in the exclusions list; I should probably state that straight out. One of the things that we saw (g) doing, and this is an example that we had through our offices -- there was a nursing home resident who needed to have her ear syringed. It ended up being three phone calls: one to husband -- husband wasn't available; called the son -- son wasn't available. They somehow connected, heard that they both had messages, worried that there was something dreadful happening to mom in the nursing home. Both called the nursing home and discovered it was for a syringing of ear wax. That's the sort of thing that the non-risky clause is meant to cover, as far as we can see.
Mr Marchese: I have one question and my colleague has another. I was trying to understand the vigour of your opposition to rights advisers. Before you comment, we heard this morning from Thunder Bay Regional Hospital -- a mental health services manager, a psychosocial support person manager and a quality assurance risk management coordinator -- and they were quite strongly supportive of rights advisers and felt that they needed to be there, as is in the act. We heard from Persons United for Self-Help, Northwest, talking about this. In fact she was very strongly concerned that we're losing, through this act that has been presented, some of the autonomy we were trying to restore to individual people -- seniors and people with disabilities. We were informed by those kinds of people who were telling us that we needed to respect and be concerned about either individuals who had no family or individuals where family may have been the abuser, so we have to build in support for people like that. Why is that you're so strongly against rights advice for individuals where with people like this are now concerned we have totally shifted the balance once again?
Dr Warrack: One of the problems is that advising about rights in a physician's office is a very abnormal relationship, in that the formal way that it's done under the existing act seems abnormal. It just doesn't fit in with the normal doctor-patient relationship. On that basis, for every practitioner, I think, that formal mechanism strains the relationship. It's very difficult when you're talking about treatment to actually get into a legal discourse.
Mr Marchese: I understand. The way it was read and the way one person read it last week in committee, it was dreadful; I understand that.
Dr Warrack: I wonder who that was.
Mr Marchese: On the other hand, this morning, I think it was Sandi Homeniuk, the manager of health services, who said that was a bit burdensome, but there are ways we could have done the same thing. So do you agree that we could do it differently? Yes, it's strange to be reading it so technically and legalistically, as it seems, but the rights adviser is important. How we do it is the question.
Dr Warrack: We still think that during the doctor-patient relationship the advice about rights is not the way to go.
Ms LeBlanc: Just to expand a little bit, the one thing that we've learned about rights advice is that very few people actually go on and seek a hearing before the Consent and Capacity Review Board, and those people are in generally what we would call the grey zone of capacity. So it seems to us that the rights advice system isn't really targeting the frail and the most vulnerable; it's actually helping the people who probably least need the help. I think we'd rather see the scarce resources that we can devote to advocacy set out towards systemic advocacy and the broad issues around what's happening in various sectors; for example, the unregulated boarding homes, those sorts of things.
Mrs Boyd: I wanted to ask a question. You talked a bit about what is treatment and what isn't treatment, and what is low-risk and what isn't. We've had several people raise the issue of nutrition and hydration and how that fits into treatment or just activities of daily living. Certainly, when we think of anorexics or when we think of people who are in their last days of life, we see a contrast between the issues of nutrition and hydration. I wonder if I could get a sense from you whether you think that actually ought to be clearly defined as a treatment or not. I worry a great deal. We certainly have heard a lot about the withdrawal of nutrition and hydration without consent in certain circumstances, but also the force-feeding issue, particularly for disabled people who are saying they do not wish to continue. I think it's a very, very difficult, ethical issue, but when we're doing an act like this, I wonder whether it fits under treatment or just activities of daily living.
Dr Warrack: I think under certain circumstances hydration and nutrition in fact are the only way of handling a particular situation. So again, under some instances, you might well consider that as the only activity that's going on that's making a change to their being or wellbeing. In some instances, extreme instances, it could be considered to be a treatment, although most of us I don't think would assume that that's treatment. But it certainly doesn't follow our normal definition of treatment.
Ms Boyd: Certainly, one of the issues around all this is the reality that we're trying to protect vulnerable people, whether they're vulnerable because they're unable to express their own wishes and whether they may in fact be nearing the end of their lives and how do we keep them comfortable in those circumstances. But also, if we think of young anorexics and the decision very often to feed by tube, which is not accepted by that young person, we are getting into a very clear consent issue.
Dr Warrack: But a tube changes it, in my mind. A tube stops it. Then I would think --
Mrs Boyd: Then it's treatment.
Dr Warrack: I would say so.
Mrs Boyd: But offering food is the issue that was raised by one of the people last week, that food ought to be offered, whether or not it's accepted, just as a part of the activity of daily living.
Dr Warrack: Yes.
The Chair: Thank you, doctors, Ms LeBlanc, for your suggestions about possible clarifications in the act. That's very valuable to the committee.
FAMILY AND SERVICE PROVIDER ADVISORY COMMITTEE
The Chair: The next submission is by Ms Gillingham representing the Family and Service Provider Advisory Committee. Welcome. You have one-half hour, including questions. Please proceed.
Ms Eve Gillingham: I I won't take half an hour.
My first name is Eve and I am a member of the Family and Service Provider Advisory Committee. On behalf of the chair and other members of the Family and Service Provider Advisory Committee who could not be here today, I would like to take this opportunity to thank the standing committee on administration of justice for the opportunity to speak to Bill 19 today.
Before I begin my presentation, I think it would be helpful for this committee to know a little bit about the Family and Service Provider Advisory Committee, to hear our views in context, because the FSPAC, as it is known by its acronym, is a relatively new committee. It was established in April 1995 in accordance with the provisions of section 11 of the Advocacy Act. According to the legislation, FSPAC was created with three main purposes: (1) to comment on the impact of the advocacy services provided by the commission on the families and providers of health and social services of vulnerable people; (2) to advise and consult on the policies and procedures of the commission as it carried out its legislated mandate; and (3) to appoint two members to the Advocacy Commission's complaints review committee which would, if necessary, deal with complaints about advocates.
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We are required to report annually to the minister, now the Minister of Citizenship, Culture and Recreation.
We are a small committee composed of five members and a chair. Three of us represent service providers and three of us represent families. I am a nurse by training and I have been involved in direct care and supervision for more than 15 years. I have worked in acute care settings, long-term-care facilities and other institutions. The other service provider members of FSPAC include a hospital administrator and the manager of policy for a provincial mental health association. The family members of our committee include the father of a multihandicapped daughter, the mother of an adult schizophrenic son and the son of an elderly mother suffering from Alzheimer disease. We come from all parts of the province: from Toronto, Brockville, Windsor, Dundas and Thunder Bay.
Since our inaugural meeting in April, we have held five meetings. In a relatively brief period of time we've determined how we would operate, we established a cordial working relationship with the chair and staff of the Advocacy Commission and we began developing contacts outside of our respective institutions and organizations in order to carry out our mandate of gathering information on the impact of the commission's activities on families and health and social service providers. Last month we participated in a focus group session organized by the ministry.
Although FSPAC is a relatively young committee and its brief history will likely go unrecorded if the Advocacy Act is indeed repealed, we FSPAC members nevertheless would like to raise our concerns about Bill 19. Through our personal and professional lives, we represent many decades of expertise and experience in providing service, care and support for vulnerable people throughout the province of Ontario. We represent the many professionals, parents, children, partners and friends involved in the lives of vulnerable people.
Because of FSPAC's mandate, my remarks today will deal primarily with the first part of Bill 19, the repeal of the Advocacy Act.
We sympathize with the government's struggles to rein in the deficit. Nevertheless, we strongly recommend that the government not repeal the Advocacy Act unless and until some other independent system of advocacy is in place throughout the province. We believe that it is the obligation of government, not just families, service providers and volunteers, to offer support for advocacy so that the rights of vulnerable people in Ontario are respected and vulnerable people are able to make their own life decisions. Over the past 15 years, it has been demonstrated again and again that there is compelling need for a system of independent advocacy in Ontario. Please ensure that the work of the past decades will not have been wasted.
As family members and service providers, we play an important role in advocating on behalf of vulnerable people and assisting vulnerable people to advocate on their own behalf. However, there are limits to what we can do. We cannot be there for every vulnerable person. While most families act as powerful advocates on behalf of their vulnerable family members, there are unfortunately some families that are either unable or unwilling to care for their vulnerable family member. In some cases, even caring families may sometimes burn out as a result of being pushed beyond their ability to cope, and reluctantly they sometimes abdicate their responsibilities.
You must also recognize that there is the potential for conflict of interest between what the family and vulnerable person or service provide and vulnerable person consider to be in the vulnerable person's best interests. In addition as service providers, we sometimes find that our organizational or professional goals are in conflict with our ability to successfully advocate on behalf of the vulnerable person. From my own experience, I know of health care professionals who have had their jobs threatened as a result of trying to advocate on behalf of a patient. Therefore, we believe that it would be best to avoid any situation that may pose a conflict of interest.
As for relying on volunteers to act as advocates for vulnerable people, it is true that there are many willing and capable volunteer advocates working alongside paid staff in a variety of facilities and community agencies. However, volunteers come and go. Before they can be effective, they need to be trained. Once they are trained, they may burn out. Community agencies are also a source of advocates, some of whom are paid through government funding and through other funding sources. However, as these agencies experience cutbacks in funding, their staff is increasingly overworked and, as you know, underpaid. Consequently, waiting lists for community services continue to be long.
Advocacy for vulnerable persons, we believe, requires the government to take two approaches:
Individual advocacy with a primary focus on promoting self-advocacy, as well as encouraging such models as the personal support network or circle of friends for those who cannot advocate on their own behalf, and to protect the vulnerable from abuse;
Secondly, systemic advocacy, which offers the possibilities for broad change at the provincial level that will benefit all vulnerable people. We recommend a cross-disability approach. After all, every vulnerable person needs shelter, transportation, sufficient income to cover his or her basic needs and so on.
Systemic change can make a difference for not just one vulnerable person, but for all. It also decreases the need for individual advocacy services.
Allow me to offer an example of a systemic problem that came to the attention of one of our members last week. The problem occurs with transportation that requires a wheelchair going from Hamilton to Toronto or from Toronto to Hamilton. GO Transit has an exclusive licence to carry wheelchair passengers on this route, but the station in Hamilton is not wheelchair-accessible. Apparently, the Hamilton station will be refitted at some unspecified time. At the same time, there are Greyhound buses that have been modified to take wheelchairs, thanks to large grants from the federal government. They do not make a stop in Hamilton en route because Go Transit has the exclusive licence for this route. It seems that buses are not allowed to carry wheelchair passengers from Hamilton to Toronto or from Toronto to Hamilton.
Just this week, our committee member checked back with the bus company about the possibility of stopping in Hamilton for a wheelchair passenger. When pressed, the company official agreed that a special stop could be made for a wheelchair passenger, but if there was another bus on the platform, that there would not be enough room to use the lift and the person in the wheelchair would have to stay on the bus. There must be a solution to the problem, but there does not seem to be any united effort or any coordination in addressing the issue.
In addition to coordination, much of what is required for successful advocacy involves training and support:
Rights education for clients of service or care facilities, as well as for families, friends, care/service providers and volunteers;
Education about treatments, types of residential facilities and caregiving services and supports;
Ongoing assistance to families, caregivers and volunteers in caregiving, and for volunteers, in particular protection from liability;
Knowledge about where to raise concerns about care or service, and how to be an advocate for oneself or another person; and
Ongoing professional development for caregivers on rights, complaints, newly introduced legislation, regulations and procedures.
If the Advocacy Commission, as it exists today, must be dismantled because of financial considerations, we recommend that the government consider funding a less costly entity: one that is at arm's-length from the government, one that has broad representation from a variety of disability and seniors groups, one that could act as a coordinating body.
This would, in turn, offer policy advice on issues affecting the vulnerable:
To ensure that essential advocacy assistance be made available 24 hours a day, seven days a week, as required;
To encourage the involvement of volunteers working on behalf of vulnerable people, but not to the exclusion of paid staff. For example, a corps of regional facilitators could not only train volunteers, but they could address the need for local accessability to services and advocacy, focus on local issues using local resources, as well as address the need for accountability for the quality of services provided;
To make available information pertaining to advocacy in a variety of alternative formats to address some of the barriers obstructing the provision of advocacy, such as education level, speech ability, comprehension, language and culture of the vulnerable person;
To offer the possibility of flexibility in advocacy, depending on the particular circumstances and/or disability of a vulnerable individual;
To provide opportunities for consumers to dialogue and consult with care and service providers that allow for all of their concerns to be raised and, hopefully, addressed;
To make any complaints system both easily accessible and user-friendly;
To ensure that confidentiality be respected for those seeking advocacy.
Above all, we ask you to ensure that independent advocacy and rights advice are provided consistently through the various pieces of legislation.
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We also believe there is valuable information available from the Advocacy Commission, information that should not be lost. For instance, the statistical data collected by the Advocacy Commission on rights advice, as well as intake and referral, would prove useful to any future advocacy entity -- for example, how much demand for advocacy services occurs after normal business hours -- and it may be economical to build on the Advocacy Commission's existing database that is used for intake and referral. This database of care and advocacy services could be maintained and updated and perhaps made available on CD-ROM through public libraries. We recognize, of course, that resources will be required to keep such a system up to date.
We urge the government to offer key leadership as well as ongoing support and resources in retaining comprehensive legislated advocacy. We further urge you to use your government powers immediately to improve the situation for vulnerable people in this province: Ensure compliance with existing legislation and regulations that affect vulnerable people; consider individualized funding for people with disabilities who do not fit the criteria for specific programs -- in other words, focusing on client needs rather than on program needs; and consider offering support for Ontarians with the Disabilities Act.
Finally, after all of your considerations, should you decide to repeal the Advocacy Act, we ask you to create a bridge between existing services provided by the Advocacy Commission and whatever plans the government intends regarding advocacy, to ensure that all vulnerable people in Ontario will be protected and that no one will ever again fall between the cracks.
Thank you. I would be more than pleased to entertain any questions.
Mrs Caplan: Thank you for an excellent presentation. I think that your suggestions for what could be put in place are reasonable and realistic and I hope that the government will listen. The Australian model -- I don't know if you're familiar with that.
Ms Gillingham: No, I'm not.
Mrs Caplan: In Australia, they have three advisory committees which deal with the policy issues and an opportunity for cross-dialogue. One policy committee is for professionals, one is for families and providers and the third is for consumers and patients. The three advisory committees act in a way that helps with policy development, pointing out where the legislation is in need of improvement. In the annual report of their consent and capacity board, they notify the government of suggestions that have come forward, so it goes beyond their quasi-tribunal role and it also allows for a vehicle. Because they have a coordinating role as well, they can refer to identified community advocate organizations or just answer questions. They have a mandated education role, and I noticed that you recognize that.
Just as something to explore and look into, would you support that kind of compromise between nothing and something?
Ms Gillingham: Yes, I would.
Mrs Caplan: Do you think it's at least a good idea to look at what's happening in Australia? It's my understanding that it's relatively inexpensive, that it's a way to have a foundation so that not all advocacy services are lost and that you do have the opportunity for education. So you would support that?
Ms Gillingham: Yes, I would.
Mrs Caplan: The other point you make that I think is an important one is consistency. We know that is lost in the legislation, because individuals are informed of their rights only under the Mental Health Act if they are presently, under this new legislation, in a facility. The consistency that we're looking for, the minimum, is that they also be informed when they are found incapable and know what their rights are under the Mental Health Act, no matter where they are.
I'm suggesting, actually, that the definition be changed from facility to program, so instead of being a psychiatric facility it would be a psychiatric program, and that would encompass all the schedule 1 and community hospitals, plus community-based mental health programs. Would you support that kind of an amendment that would allow for consistency?
Ms Gillingham: Yes, I would.
Mrs Caplan: Similarly, I believe the issues of confidentiality will be addressed by the privacy commissioner and I hope those amendments will be tabled in enough time for us to review them before clause-by-clause.
The last point I would make is the consistency of the providers having an obligation to inform an individual when they have been found incapable. There's no consistency right now among the colleges, and we know that social workers are not under the Regulated Health Professions Act. Would you support a statement of obligation that would be consistent to ensure that all providers, whether they're under the RHPA or not --
Ms Gillingham: Absolutely.
Mrs Caplan: -- and that that obligation would be to inform of a finding of incapacity, to inform of the right to appeal and how to appeal?
Ms Gillingham: Yes, I would.
Mrs Caplan: Those are the three. Thank you very much for an excellent presentation. Was your group consulted by the government?
Ms Gillingham: No, we weren't.
Mrs Caplan: You were not. Just to put it on the record, I did ask the Ontario Medical Association if it was. Their staff was consulted, although they did not have a meeting with the minister on this.
In the time remaining, could you tell us a little bit more about the Ontarians with Disabilities Act? I haven't heard of that legislation. It's on your page 7.
Ms Gillingham: Actually, I inquired, because this paper was composed by a number from our group. What it is is an act that has been proposed to protect the rights of disabled people with regard to their employment.
Mrs Caplan: I see.
Mr Dwight Duncan (Windsor-Walkerville): Is that taken from the Americans with Disabilities Act? Is it intended to act as that statute of the government of the United States does?
Ms Gillingham: I'm sorry, sir, but I can't answer your question.
Mr Duncan: I think it does. I think it has been proposed and is very similar to that law.
Mrs Caplan: If you find out what it is, you can just let us know in writing to the committee and it will become part of the record.
Ms Gillingham: Okay.
Mr Marchese: Thank you for your presentation. This government has been very clear about its desire to repeal the Advocacy Act. They were clear before and they're very clear now. They're not very clear about what to replace it with, if indeed they're going to replace it with something. My sense is that we're not going to get much of a replacement with respect to advocacy or the work the Advocacy Commission did, was about to do and so on. It eliminates the rights advisers as well.
You made a number of very interesting points, and you haven't been the only one who has been saying it. There's a recurring theme with respect to what you're saying. Just to repeat, some of the stuff you've said is: "We believe that it is the obligation of government -- not just families, service providers and volunteers -- to offer support." I agree with that. I think this government takes a different position, but many of us take the position that government has an obligation to provide support in this particular field. I agree with you that there should be independent advocates in Ontario.
You talk about some of the difficulties with family members taking care of individuals. Some are very caring, of course, but some, you say, may not be prepared to do the caring or are incapable of doing the caring, and some don't have families, so how do you protect those individuals?
You also said you know of health care professionals who have had their jobs threatened as a result of trying to advocate on behalf of patients. That's the first time I've heard that from any submission, but that's a reality as well that complicates advocacy in general. Even those who could potentially be doing it in some cases are threatened by their employers about doing that.
Ms Gillingham: That's true.
Mr Marchese: You talked about volunteers, not that you're opposed to volunteers, because they're there and you welcome them, but that they need training, they need a great deal of support to be able to do that work, and eventually they leave. I'm not quite sure how we deal with some of your suggestions, except that I support them. I supported the commission. I support the rights advisers because it gives protection to individuals who otherwise may not get it or may not have it.
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Do you have any other suggestions to the government members with respect to advocacy or rights advisers in terms of restoring that, or can you find a way to reach some of the members perhaps?
Ms Gillingham: Gee, I'm not sure I can do that. Upon review of the Advocacy Commission, I'm sure you're aware that it was composed of 13 members. Eight of those members represent essentially the province of Ontario through their disabilities, their locations, their cultural aspects as to how they actually receive their physicians within the community. I think if it was going to be considered that there be a group of people who represent those disabled, certainly there is a core group that has been established.
Mrs Boyd: I want to go back to the two issues you raised about, first of all, the vulnerability of someone within the health care professions in advocating on behalf of patients. We talk a lot about team providers, but we all know that even under the Registered Health Professions Act, everybody works under the physician. I certainly, during the time we were talking about how to do advocacy in Ontario, heard from many nurses in particular, working often in home care situations, who were concerned about the care that was being given to people and, because the physician did not agree, were not able to make those wishes known. I think that happens in many other settings as well. We've heard about it in nursing homes.
Part of the issue in this whole rearrangement and ensuring there's advocacy is somehow getting beyond those professional protocols, if you like, about who is able to speak to whom about what. That never seems to come out, so I'm glad you raised it, because I think it's a very real problem and certainly it's not one we've heard thus far in the committee. I'm very glad you raised it. I can think of three instances myself where a VON nurse in one case, a nurse in a long-term-care facility and a nurse in an acute care hospital had disciplinary notes on their records because they went around a physician because of a real concern about the wellbeing of their patients. I think that's a real concern, and I'm awfully glad you got it on the record.
The second thing is the fatigue aspect, caregiver fatigue in terms of families. One of the real issues around long-term care is the issue that you may have a willing and loving family, but 24 hours a day, seven days a week, often for many years, becomes a very real problem for many of those families. I think in looking at both long-term care and this act, we probably haven't made enough recognition of how those well-meaning families become unable to give the kind of care that they started out to give as that fatigue comes forward.
I'm glad that you mentioned that, and for volunteers as well, the burnout issue. It is a very real issue when we look at these kinds of things. People's lifespan is often longer than was expected initially, for example, or the care becomes heavier than was initially expected. It puts a real burden on families that hasn't been recognized, and that makes people more vulnerable.
Ms Gillingham: Very much so.
Mr Clement: Thank you very much for your presentation and also for participating in the focus group which you mentioned in your presentation with respect to the Ministry of Citizenship, Culture and Recreation and some of our attempts to have a dialogue with interested parties about, in the absence of an Advocacy Act, how and in what manner government can concern itself with this area. I just want to thank you publicly for participating.
Ms Gillingham: I think I should interject at this point. I missed that particular meeting. We had a large dumping of snow here in Thunder Bay, so that was the one meeting I did miss, but it did go on.
Mr Clement: Let me thank you institutionally then, for participating, rather than personally.
Ms Gillingham: All right.
Mr Clement: I did want to touch on a couple of aspects of your presentation. I want to return to something I said last week in terms of my reading of the O'Sullivan report, which really has been a touchstone for many of the groups we heard last week in regard to how to orient oneself with advocacy. I found it very compelling, upon reading sections of that report, that Father O'Sullivan was talking about the general moral duty of human beings to always, to the best of their ability, act as advocates for their fellow citizens who were vulnerable.
Last week I expressed my concern that if we have a whole hierarchy and bureaucracy of government involvement, we would be detracting from that, because there does tend to be a tendency sometimes, when people see government involved in something, they think that everything's all right and they don't think they have any more personal responsibility for that particular aspect of society. I would be concerned about that.
Related to that -- and I would like your response to this line of reasoning -- our view is that rather than being a conflict of interest, it is precisely those who are the most knowledgeable and the most concerned about the vulnerable person who make the best advocates, whether it be a family or friend or health practitioner. Those persons seem to be the most connected to the vulnerable person. I'm not saying they always act perfectly, and there have to be safeguards, but by and large, that would be the case.
I would put on the record again, we as MPPs, whenever we go back to our ridings, constantly deal with situations where our constituents are coming to us because the state has acted in an uncaring, unthinking way which genuinely hurts them and their family. I would put it to you that we have no guarantee -- in fact quite the opposite of a guarantee -- if the state concerns itself with vulnerable persons in vulnerable situations, they might make a mess of it to a far greater magnitude than those who love or are knowledgeable about a vulnerable person.
Am I barking up the wrong tree in thinking that way, or is there a way to reconcile what you've been saying with what I've been saying, do you think?
Ms Gillingham: No, I think there cannot be an exclusion of any group, whether it be a volunteer group, a government group, a nursing agency, a physician group. We all have an obligation to our vulnerable population.
Mr Clement: Do you share my fear -- I sense that you don't and I'd like you to explain why -- that the more we have state-sponsored advocates, state-sponsored advocacy commissions, the more we're getting away from those who are knowledgeable or who love the vulnerable person? You don't share that concern.
Ms Gillingham: No, I do not.
Mr Clement: Can you elaborate on that just a bit?
Ms Gillingham: I think when you speak of state, you're elected by all groups of people, whether they be vulnerable or well, and when you have their best interests at heart, you've listened to them. So why would I have a concern about the decision? Hopefully, you've made a very knowledgeable decision based on facts and data as opposed to emotions and feelings.
The Chair: Thank you, Ms Gillingham, for your presentation.
The room will be secured, if you wish to leave your documents here, and will be open at 1:20. We are recessing to 1:30.
The committee recessed from 1158 to 1335.
The Chair: I call the meeting to order. It would seem that the 1:30 and 2 o'clock are not here yet.
Mr Len Maki: We're here, sir. I'm here for 1:30.
The Chair: You'll have to step down until we do the third one then, if you would. She's already at the table
AIDS COMMITTEE OF THUNDER BAY
The Chair: Then 2:30 is the AIDS Committee of Thunder Bay and we have before us Sheila Berry, the support services coordinator. Ms Berry, you have one-half hour, including any questions that you might wish to answer. You can proceed.
Ms Sheila Berry: You'll have to excuse me. I'm operating with a cold.
Mr Pius White, who also had a lot of input into the information that you're going to get, is a person living with AIDS. He tried to be here, but he's ill this morning so he's not able to be here. Hopefully, I can do a good job of representing his interests too.
I work at the AIDS Committee of Thunder Bay. Many of the people I work with may or may not have health care directives done in advance, so a lot of the time we, as support workers, will work with them and advocate to make sure that they get a good level of care because there is still a lot of misinformation and unacceptance of the disease, mainly in how the disease is transferred from one person to another. Having said that, this is why I'm very interested in presenting to your committee.
I'm just going to read some of my stuff and I may add some stuff as I go. If you have questions, that's fine.
Having reviewed Bill 19, we realize the impact it will have on a person's right to determine the direction that their personal health care will take if a health care directive or living will or power of attorney is not in place before that person becomes unable or is deemed incapable of making decisions. We are therefore proposing the following recommendations to allow all persons the right to self-determination regarding their own care.
The first point is that we would ask that you rethink your position on the Advocacy Act and not repeal the act in its entirety because there are many good things proposed by the Advocacy Act that do ensure that an individual who may be vulnerable will therefore get the level of care they need and also be informed properly at each step of the way. The purposes and principle upon which the act was based do encourage empowerment of vulnerable persons and do respect their rights, freedoms, autonomy and dignity. That's very important.
We ask that you provide advocacy services in some mechanism when you're rethinking Bill 19, to have something in there where there are avenues for advocacy and a recognized advocacy person in the community or in the institution who again will ensure that the rights of the individual are looked after properly. If the proposed methods outlined in the act are not feasible and are confusing, then we ask you to rethink them and make the necessary adjustments.
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A rights adviser is a must to ensure objectivity and fairness to persons already marginalized and systemically discriminated against. In those people, we include aboriginal peoples we work with, people who are drug users, gay and bisexual men and women, transsexuals. We may be working with all kinds of different people, handicapped people. Where empowerment was encouraged through the Advocacy Act, it seems now that it's on the flip side, and that's not a comfortable position for many people whom I work with.
Involve people affected by the proposed legislation at the committee level. Get their input, find out what works, work with them. They have good brains and life experience that can add and help and make a good comprehensive package that we can all live with.
Point 3: As I mentioned before, parts of Bill 19 take power for decision-making out of the hands of the affected individual and encourage dependence and disempowerment. How it does that is, when you bring people into the decision-making process who do not have an established, long-term relationship other than a family by blood or by marriage -- there could be an estranged, long-term separation from the family of origin and there could be people at the community level who would have more information and know what more this person who is requiring treatment would like.
It may be totally inappropriate for a relative or family member to intervene in personal care if the affected person does not wish it. In the case of estranged family ties, there has not been the continuity of relationship and communication between the two relatives. Therefore, the substitute decision-maker may have no idea what the incapacitated person may want. There may be deep-rooted differences and resentments present that will in themselves affect the decision-making process. We cannot assume that the person making the decision in these cases will have the best interests of the incapable person at heart, whereas a friend, roommate or other significant person may know the incapable person very well and be aware of their wishes with respect to health care.
In situations where the family has not been supportive or respectful of a person's lifestyle choices, how can a relative or family member put aside their personal prejudice to make an appropriate choice for the incapable person? There could be a lot of very strained relations. I see it every day. When we have a person living with AIDS, on one hand, who has chosen the life they have, they're entitled to the same level of care, although we as support workers try to work with the family unit and to mend, to heal, to do this, usually by the time a person comes home to their community. In some cases, they choose to the community of choice which may be, for instance, the gay community in Toronto. There is a very close-knit community and they're very supportive of each other and provide care and support for each other.
Sometimes what will happen is, those old wounds, those strained positions, those sort of polarized views about lifestyle can affect and can be more damaging than someone who lives closely with the person or around the person and that person's network and would know more what the person wants and be able to carry it out without those engrained prejudices, biases, whatever you will.
This in fact could add more stress to the person's recovery. If a choice was made or the family was making decisions and -- let's take a wild case where, for instance, someone is gay and it could be an ex-partner who comes to support the person, and the family is not in tune or does not agree with the lifestyle. They may try to disbar that person who could offer a lot of support emotionally, psychologically. That could be very damaging to the person's recovery mentally, emotionally and psychologically, so somehow we have to have a balance there.
Like I say, we always try to work with the opportunity to bring families closer together, but when someone is dying that's not always first on their mind. Sometimes people can't put those things aside until it's too late.
On point number 4: Bill 19 favours relatives and family over relationship and community. In the case of close-knit and supportive communities in which the individual may reside, care must be taken in choosing who might be the most appropriate person to represent the best interests of the incapable person. There must be guidelines in place to ensure that the vulnerable person's right to appropriate decision-making is ensured. I would ask that you think about that when you are redoing Bill 19. There are a lot of good things in Bill 19 that I like, one of them being the process of appeal and the process of advocacy. However, without a rights person in there somewhere to intervene, we need to take that into account. I think the two can be worked out somehow.
With the abolition of the Advocacy Commission, how will the rights of the incapable person be guaranteed? We urge you to think about how this can happen and incorporate this into the proposed Bill 19. Having come so far to ensure that all Ontarians are entitled to assert their rights, what mechanisms are there to guarantee that this will happen without a body to oversee this? That's a question that I put to the committee and to our current government.
Regarding the Substitute Decisions Act, will the existing power of attorney kits still be used to indicate a person's choice of power of attorney for personal care and continuing power of attorney? Can anyone answer this for me?
Mr Klees: Yes.
Ms Berry: Yes, they will? They're still using the kits? There's nothing to replace them?
Mr Klees: No.
Ms Berry: Thank you.
Regarding the power of attorney for personal care, are there any changes in who can and who cannot be named? There's very specific information in the Substitute Decisions Act. It specifies that the following persons cannot be named: a person who is 16 years old or more -- wait, is that a mistake? "Sixteen years and under" that should be -- cannot be named; so 15 and under. A person who is providing you with health care or residential care, social, training, advocacy or support services for compensation -- are there are changes as to --
Mr Parker: The answer I'm getting is just advocacy. Basically it's the same list but with some minor adjustments.
Ms Berry: That could be a problem then, because if there is no provision for advocacy in this particular section here -- part of my job is advocacy. Part of my job description is advocacy so if I could know what the changes are, that would help. This was a question that Mr White wanted to know because he's in a situation right now where the best person to advocate for him would be his support worker, who knows him and has done his health care directive with him. So we want to know if there are going to be possibilities there.
Mr Parker: Did you want the response now? One of the concerns we're receiving is precisely the other side of that argument, that those people who are in a position of care have that degree of control over the person, and there's the concern that they might exercise that control against the interests of the person. So that's the consideration that has to be balanced off in that discussion.
Ms Berry: Perhaps there could be a way to set out some criteria, if that were to be allowed.
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Mr Parker: We will get into an opportunity for dialogue later on. I don't know how you want to use your time, but those issues can be addressed.
Ms Berry: Okay. I've never done this before, so I don't know.
Bill 19, part II, Health Care Consent Act. Under the existing act, if consent to treatment is refused on an incapable person's behalf by the authorized substitute decision-maker, the health practitioner may treat despite refusal, only if the decision-maker did not comply with the principles set out in the act. In the new Health Care Consent Act, the practitioner may treat the incapable person at his or her own professional discretion even if the authorized person refuses treatment in compliance with the principles of the act. Is this true? This is how I read it. Maybe we can save that till the end.
Mr Marchese: You only have half an hour, and we may not have a chance to ask too many questions, so if you want the members or a ministry person to answer your questions, maybe you should decide that, because you won't have much time left. If you want answers you should just indicate that as you go along.
Ms Berry: Yes, I do. I would like an answer to that, please.
Mr Parker: Could you repeat the question?
Ms Berry: It's right in number 8, put as a question.
Mr Marchese: Mr Chair, can I recommend that the ministry people come forward to the table, closer to the parliamentary assistant, to provide that advice.
Ms Halyna Perun: My name is Halyna Perun. I'm legal counsel at the Ministry of Health.
Section 15 of the Health Care Consent Act says: "If after consent to a treatment is given or refused on a person's behalf and the person becomes capable in the opinion of the health practitioner, the person's own decision to give or refuse consent governs." Therefore, even if you have substitute consent and the health practitioner is treating on the basis of the substitute consent, when the person becomes capable, this act clearly says that the health practitioner should take the consent or the refusal of the capable individual.
I think there was a section like that in the Consent to Treatment Act. There may have been just some minor word clarification to make sure the intent is accurate.
Ms Berry: As I read it, I had a different perception.
Ms Perun: So is that clearer?
Ms Berry: No, but maybe I could find out the answer to that.
Ms Perun: I can speak to you later if you'd like.
Ms Berry: That will be fine.
Mr Parker: My problem is with the question. Once we've got the question clearly understood, we'll get you the answer.
Ms Berry: It's clarified in number 8.
What if the health care directive clearly states refusal of the procedure or treatment? Because of the number of opportunistic infections with which a person may be infected, and because many treatments and drugs are not proven, a person may not wish to continue aggressive treatment. Is this allowed? I'm feeling vague about what I read in the new act. It's allowed?
Mrs Boyd: Yes.
Ms Berry: Even if the person is incapable and the substitute decision-maker makes that decision based on written evidence in the health care directive?
Mrs Caplan: The directive takes precedence. That's why people should be careful how they write the directive. It's very important that people know they must be very careful about how they write a directive, because the advance directive takes precedence. The only time it can be challenged is if the substitute or the attorney believes there's new information that would govern a wish different from the directive. They can go to the capacity board to make their case, but even then, a lot of weight is given to the advance directive. That would be in the case of a new cure.
Ms Berry: Yes, or a new treatment.
Mrs Caplan: Or a new treatment that was not known when the directive was made.
Ms Berry: Also, if a Do Not Resuscitate order is on the health care directive, can a health care practitioner overrule this?
Mrs Caplan: Again, be very careful. If it's a blanket Do Not Resuscitate, it may not be in the event of a terminal illness; you may have an arrest in a person who could regain full consciousness and awareness and full use of their body and independence and so forth. It's important for anyone when they write that to contemplate under what circumstances they would want a DNR.
Ms Berry: Thank you. This was a question from Mr White. That's the gist of my presentation.
Mrs Boyd: What your presentation has made very clear is how very important it is going to be for the AIDS community to educate itself and its members about the importance of the personal health care directive and having a power of attorney, particularly, where we do know there often is a conflict between the family's values and the person's values around lifestyle and around choices, that it's important for people to do that. We understand it's very difficult to talk to people about that and to help people understand the complexity of this whole thing.
In answer to your question in part 8, I think your friend may have been more concerned about section 16, which follows on section 15, where it says that if the health care practitioner is still saying that the person is incapable and there has to be a board hearing, there are certain circumstances after 48 hours in which the health care professional can go ahead and give the treatment that was originally ordered by the substitute decision-maker. That may have been where the issue was, and that's why you need to talk about all those things, but it's kind of at a remove from just overruling a personal directive.
Mr Parker: I just want to help you out with one point that, if I understood you correctly, caused you some concern. In your capacity as an advocate, your concern is that you may not be entitled to be appointed as a substitute decision-maker, and I want to reassure you that that need not be a concern under the proposed bill, that you are fully entitled to be selected as a substitute decision-maker. There's no bar against you per se.
Ms Berry: But there would be in my capacity as a support worker providing services for compensation. Now I'm just wondering, is that the same?
Mr Parker: That the same concern is being addressed there, the issue of the control over the individual; that's the consideration that has to be balanced off. The point has been made, and I think it bears repeating, that the solution to all these concerns, of course, is for the individual to take out a power of attorney for personal care before the issue arises.
There will always be situations where an individual, for one reason or another, won't be comfortable with the laundry list of selections available under the statute. For their own particular reason, they will want somebody else to be chosen as their personal decision-maker, and they have that right under this legislation. Frankly, they have the right under the existing legislation also to designate anyone they choose by their own criteria. They don't have to have a family member, if they're not comfortable with a family member having that degree of influence over their life. The bill allows that flexibility. They're not bound to have a family member make their decisions for them if they would rather have a friend or a member of the community or someone else of that sort. That flexibility is in the bill, and that's the solution, I would suggest, for most people who have the concern you're raising.
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Mrs Caplan: I'd like to pursue that a little further, and I'd like the ministry to give us some clarification to see if I'm correct about how it would work. There are several different notions here: First is the notion of attorney under the Power of Attorney Act, the second is guardian, and the third is the substitute decision-maker. It's my understanding that you or anyone could choose anyone they wish to be their attorney, and as long as the attorney does not witness the power of attorney, it is a valid power of attorney. So your friend could name you, even though you are a paid caregiver, under a power of attorney as the decision-maker when it was necessary to have a substitute.
Where you would have a difficulty is if there is no power of attorney. The question then is, are you in the hierarchy? The answer in this legislation is that it would permit a caregiver, but you're down the list on the hierarchy. A third question is, who can apply for guardianship? It's my understanding that anyone can apply for guardianship as long as they don't have a conflict. That's where I'd like some clarification, because I think these are the questions you wanted answered, correct? Let's see if we can get the ministry to go on the record and straighten that out.
Ms Spinks: Under the current legislation it works this way: for the power of attorney for property, you can name anyone you choose. As to a guardian for property that's appointed subsequently, after incapacity, usually because there is no power of attorney, at present a person who provides residential, social training, advocacy, or support services for compensation cannot be appointed by the court unless that person is also an immediate family member.
The same applies with respect to court-appointed guardians for personal care. However, unlike powers of attorney for property, there is a restriction in the current legislation on who can be named as attorney under a power of attorney for personal care. That extends to a person who provides residential, social training, support or advocacy services for compensation, unless that person's a relative.
The amendments will continue that restriction on powers of attorney for personal care. The rationale is that the level of capacity required to make a power of attorney for personal care, unlike a power of attorney for property, is extremely low. However, the change being made is that "advocacy services" are being removed from that excluded list for powers of attorney for personal care, mainly because of the repeal of the Advocacy Act. The term was included to address advocates who were in the business of doing advocacy for the commission; that was the original intention.
However, as you've heard from a number of presenters, if the court is looking at an issue and a judge is there to examine the merits of the case and impose terms and accountability on the person who's appointed, the judge can make a decision to appoint a service provider, but only a judge can do that.
Mrs Caplan: So your concerns are valid. The answer you've just had is that your concerns are valid under this legislation. If you want to make suggestions on proposed changes that would deal with the circumstance, feel free to do that, but it's important that the clarification we've had suggests that the situation you've identified would not be possible under this legislation.
The Chair: Thank you, Ms Berry. Your time is up. I think you've reinforced the need for education, with the confusion that surrounds not only this proposed act but the prior act. We'll be considering that.
JOCELYN HUCULAK
The Chair: Ms Huculak. Please proceed.
Ms Jocelyn Huculak: As you know, my name is Jocelyn Huculak. I'm a lawyer who practises in the community of Thunder Bay. Primarily my practice is in the area of wills and estates administration as well as powers of attorney. Because of the nature of my practice, I've had considerable to exposure to areas concerning consent and capacity, and that's my reason for coming before the committee today.
I have taken the time to review Bill 19, and while there are probably a number of areas in Bill 19 I would like to address, I understand that time is short today so I intend to focus my comments on the proposed Health Care Consent Act and, in particular, I have three points I would like to raise or discuss with the committee with respect to that.
The first point I would like to bring to the committee's attention is one that I call objective versus subjective standards, and in particular, the part of the Health Care Consent Act I'm referring to is the definition of "treatment" you'll find under section 2 of that act.
It's probably an oversimplification but the whole point of this act, as well as the current act, the Consent to Treatment Act, is to provide a framework for obtaining consent to treatment. I understand that one of the present concerns with the definition of "treatment" under the existing legislation is that it may be too broad or it may not exclude situations where consent may not be necessary or where something may or may not properly be considered to be a treatment.
I note that in the new definition of "treatment" there has been an attempt to try and provide a little more guidance and a little more clarity as to what a treatment is or is not. In doing so, though, I think the definition that is proposed opens up a loophole. My particular concern is with clause (g) of that definition. The section basically provides what a treatment is and then it goes on to say that a treatment shall not or does not include "a treatment that in the circumstances poses little or no risk of harm to the person." My concern with that is the standard that would be used in deciding what poses little or no risk of harm and how that decision should be made.
It's my submission that the way that definition is written right now leaves it open to a great deal of interpretation and primarily leaves it open to a subjective interpretation by the health practitioner who would be asked to decide if a proposed treatment actually is not a treatment because it doesn't pose a significant risk of harm or poses little or no risk of harm.
I would advocate that section be tightened up so that rather than using a subjective basis for deciding what should not be a treatment, I would suggest or advocate that be determined on an objective basis, and the way I believe that should be determined is by asking that the standard be raised to what would be reasonable in the circumstances or, in other words, to add the word "reasonably" in there so that section would read, "a treatment that in the circumstances reasonably poses little or no risk of harm to the person."
I believe that by doing that we would tighten that section and require that not just in the health practitioner's opinion alone the treatment poses little or no risk of harm, but we would actually require that determination be made in the mind of a reasonable health practitioner. The point of doing that, I think, would be to provide a protection, so that in circumstances where there may be a tendency to call something or to decide that something is not a treatment because it's expedient, I believe we would impose a greater standard on the health practitioners.
If I could give a particular example, if we're dealing with perhaps an elderly patient and someone who is probably not capable of making their own treatment decisions, it's probably a lot easier to deal with, or administer treatment to that individual in certain circumstances if we decide that something is not a treatment, because then it means the health practitioner doesn't have to go through the exercise of determining capacity, and if there is no capacity then finding a substitute decision-maker.
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If we tighten that section up and make it a little bit more difficult or impose a higher standard on deciding what should not be a treatment, then I believe there's less likelihood that section would be abused so that things that should properly be considered treatments are not considered treatments just simply because it's expedient to do so. That would be my suggestion with respect to that particular subsection.
The next section of the Health Care Consent Act I'd like to deal with is one I've entitled "Notice of Rights Upon Finding of Incapacity." I guess what I'm looking for here is a little bit more protection for the incapable person. At present under the Consent to Treatment Act, if a health practitioner finds that an individual is incapable with respect to treatment decisions, there is an obligation imposed on the health practitioner to not only inform the incapable person of the finding of incapacity, but also to inform that person that they have the right to have that finding reviewed and also to meet with a rights adviser if the person so indicates.
Under the proposed legislation, much of that is gone, so while the health practitioner still has the power to decide whether or not someone is capable or not capable, there is no requirement for communication to the incapable person that they have the right to have that finding challenged. It's my submission that taking that away or removing that obligation from the health practitioner to make that information available to the incapable person really provides them with a very hollow or a very limited right. Certainly their right to appeal does exist, and that hasn't been taken away, but unless the individual is provided with some information or is given some notification of it, it may be a useless or a very hollow right that is not used.
It would be my submission that this section should be reworked so that the obligation is still imposed on the health practitioner. I don't believe it is asking too much of the health practitioner to pass that information along. I can't say whether or not that currently happens in all practical situations now, but if we go by the letter of the law, of course it should. I suggest that something similar to the existing legislation be continued in the Health Care Consent Act.
In addition, along with that, I have some concerns about the fact that under the present situation, when a finding of incapacity is made, there is a 48-hour waiting period that's imposed upon the health practitioner before treatment is administered, and the purpose of that 48-hour waiting period is obvious: obviously to allow the incapable person time to decide whether or not they wish to challenge the finding of incapacity.
With the new or the proposed legislation, it reads such that the health practitioner may go ahead and administer treatment as long as they don't know that the person intends to appeal the findings. I believe there's the possibility there that we may see situations where a person simply hasn't been given enough time to make their decision about whether or not they want to challenge the finding of incapacity, and yet because there was no mandatory waiting period or simply because they didn't know their patient intended to appeal, the treatment may already have been administered. In that sense, I think that clearly there would be a violation of the individual's right. Although the appeal could still go ahead, it would probably be quite useless if the treatment had already been administered.
In summary, my suggestion with respect to that point would be as well that some type of a mandatory waiting period be reinstituted along the lines of what currently exists in the Consent to Treatment Act.
The last section I'd like to address is one that I've entitled "Offence Provision for Health Practitioners." When I've talked with friends of mine who are health practitioners, this usually gets them excited.
Much of what we see in the existing legislation and also in the proposed legislation seems to be addressed at the substitute decision-maker. We tell the substitute decision-maker that if you don't make decisions in keeping with wishes that may have been set out or if you don't make decisions that are in keeping with statutorily prescribed principles, there are going to be penalties for you. We don't just leave the penalties as they may exist at the common law or the civil law, but it's been taken one step further with this legislation and the penalties have actually been included in the legislation. For example, if a substitute decision-maker makes a decision regarding treatment that goes against wishes that are known to that person, that person may subject themselves to a fairly stiff monetary fine in the event they are convicted of that breach.
While we've gone a long way I think to strengthen or to give weight to the fact that wishes and instructions must be followed by substitute decision-makers, I'm not sure we've done the same with respect to health practitioners. An example of that would be wishes or a living will or an advanced health care directive that an individual may have made.
We've made it very clear to the substitute decision-maker, "Follow what's set out or there is a penalty prescribed by the legislation that will be applicable." We haven't said the same, though, to the health practitioner. Certainly, if a health practitioner was to go against known wishes, it doesn't mean there aren't civil remedies that would be available, but I think we would strengthen or perhaps bring home the importance of the individual's wishes to health practitioners if similar offence provisions were provided in this legislation directed at them.
Naturally, as I've said, there are civil remedies. An individual or their family may decide to pursue a civil remedy. They may decide to pursue a remedy that deals with the particular disciplinary board that regulates that profession. However, I'm not sure that's enough to help bring home the point to health practitioners that they are obligated to not substitute their own judgement, but to follow the wishes of their patient, regardless of whether or not that person is capable.
I would strongly suggest, along the lines of what has been imposed for substitute decision-makers, that similar offence provisions be included that would apply to health practitioners who breach their duties that are imposed by this legislation. Whether or not the offence provisions need to be as stiff as the monetary fines that are imposed, I'm not going to comment on, but I think there needs to be something more. If the point of this legislation is to make it easier for people to know that they can express their wishes and know they'll be followed, we need to impose the same requirements on both substitute decision-makers and health practitioners.
Those are the comments I wish to make with respect to this legislation. I'm open to questions now or comments, if there are any.
Mr Ron Johnson: Thank you very much for your presentation. It was very insightful. I want to ask a question with respect to your concern on the advice of rights. You specified that in every case the least the practitioner can do is advise of the rights. I want to know how you feel that can work, because even under the current legislation and the current Consent to Treatment Act, it doesn't impose a positive duty on a health care provider to advise of rights in every case. You can look, for example, that it doesn't apply when someone's under 14 or in an emergency situation or where there's not a controlled act. I want to get your feeling on when you feel it's imperative this happen.
Ms Huculak: I guess it wouldn't be too hard to take those parameters you've just set out and say that in those situations, except for those you've just set out, there is a positive duty to provide rights advice. I know that under the Mental Health Act, for example, rights advice is often provided, and I think something similar to the manner of delivery of rights advice under the Mental Health Act would work here.
I don't know that we still need to have the rights advisers, but we need to at least make some effort to communicate to people that they have the right to challenge this finding of incapacity, and whether it's simply providing them with a form or reading a notice to them, something along that line so they are at least aware that if they want to challenge it, they do have that right. I know that under the Mental Health Act, the system they presently have seems to work very well, so it may be just a matter of importing that into this legislation.
Mr Parker: I want to pursue the same point because it's one that's on the minds of all of us on this committee, and the minister on day one indicated that he was open to suggestions on this point, so he's anxious to get some advice on it.
We're getting different points of view from different witnesses. Some are saying that it should be left to the discretion of the medical profession. Some have said that the way the news is broken to the individual should vary under the circumstances, that the practising physician should vary the message according to the circumstances and sometimes tell them point-blank and other times just sort of let them know, "Oh, by the way, somebody else is going to be making this decision; is that all right?" that sort of thing. Can you give us some guidance, your thoughts, on just how the legislation should address the point, how much detail it should have and have much should be left for regulation or for the professional bodies?
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Ms Huculak: It's not an easy question. I guess whether or not the information is passed on to the individual in some sort of a softened fashion, it still needs to be communicated a way that is appropriate to the situation and to the individual's background so that he clearly understands the nature of what is occurring to him. They need to understand they're being told that they cannot make this decision for themselves and that the health practitioner is going to look to someone else to make that decision.
I don't know that it would be appropriate in the legislation itself to set out in detail those circumstances. It may be that by regulation some guidelines could be proposed, but I think that it shouldn't be too difficult if we're going to decide on, for example, an age at which point this rights advice should occur if for example we're going to decide what types of treatments should fall under this. It may be just a matter of dealing with this idea of controlled acts and what should be excluded.
Because we're telling someone in this situation, "You can't make this decision for yourself," it's very serious. I don't know that we should provide something in the legislation that softens it. I think we should make it clear to the health practitioners that they are obliged to explain clearly to their patient that this is what they have found, and to make it clear they understand that they do have that right to appeal it or to question it.
Mr Parker: One of the concerns we've heard from the medical profession is that sometimes merely breaking that news is in itself counter to the clinical treatment that they're trying to administer to the patient and that it harms the patient. How do we reconcile that concern over the concern that you're articulating here?
Ms Huculak: It's a tough balancing act. I don't know, though, that merely informing someone that they're incapable -- I can see that it's going to perhaps delay the administration of treatment, but ultimately it shouldn't affect the overall course of the treatment. If the person's incapable, and whether or not an appeal goes ahead, ultimately the substitute decision-maker will make the decision to accept the treatment or not. So the end result should still be that the treatment hopefully, if it's accepted, wouldn't be delayed all that long. I guess there's no easy way. There's no easy way to tell somebody, "Look, you can't make this decision for yourself." But, given the consequences that it carries with it, I'm not sure that there should be an easy way to tell people that.
Mr David Ramsay (Timiskaming): I'd like to follow up on this point and maybe have a discussion with government members also. I am very concerned too about this omission in the bill and I'm pleased to hear from Mr Parker that the minister is looking for some advice.
The problem here seems to be as to the method of delivery of rights advice, though unfortunately the whole principle there is omitted from the bill. I strongly believe that the rights advice should be there and should be administered to the person who's been deemed to be incapable. Do you think then, if we put that in the bill, that maybe we could leave the delivery mechanism to the discretion of the professional but we do spell out that the person is notified of his right to appeal that decision, that finding?
Ms Huculak: At the very least, I think there should be some positive obligation to inform them of their rights under the circumstances. Whether delivery is to occur orally or in written form, it may be possible that you can leave that up to the discretion of the individual, but there should at least be that positive obligation.
In thinking along with that, though, obviously, if there's a written communication of the rights advice, it's a better way for us to know that the information was communicated. That may raise all kinds of problems of, "Does the individual understand the written communication that's given?" that type of thing too, but at the very least there should be that positive obligation to provide it.
Mr Ramsay: Mr Chair, could I address the question to Mr Parker about that? Do you think that would be an acceptable way of finding the middle ground on this, that we would put in the act that rights advice would have to be delivered but that the method of delivery could be left to the discretion of the health care practitioner?
Mr Parker: I would suggest that's one of the tasks before this committee. Maybe we'll have to give that some consideration when we get to clause-by-clause.
Mr Ramsay: So you're saying we are open to have that discussion?
Mr Parker: I'm saying that's what the minister said on the very first day, so certainly if it remains of interest to the committee, then we'll get to it.
Mr Duncan: Substantively, from your position -- I recognize you're not here representing physicians and professionals -- because you've put some very substantive arguments, do you see anything that would concern a practitioner about having a positive duty to inform of a right of appeal available to a person?
Ms Huculak: From my experience I know that practitioners don't like to be involved with doing that. A lot of times they view their schedules as being under a great deal of stress and they may see this as the imposition of one more thing they have to do in an already overcrowded day.
None the less, because they are the ones being asked to make a determination of somebody's ability to make their own decision, I don't think it's asking too much of them to impose this duty on them. In doing so, it's probably going to take a great deal of education to help them understand the reason why they're being asked to do this and also to help them to provide the delivery of that service or of that rights advice to their patient.
Mr Duncan: Let me just ask you hypothetically -- let's say the government imposes this positive duty, and then a practitioner fails to advise somebody of their right to appeal -- what, potentially, could happen to that person. There would be a violation of the statute.
Ms Huculak: Beyond that, it's a violation of the statute. In addition, though, you may see that physicians or health care practitioners could put themselves in a situation where they're going to be subject to civil suit or perhaps disciplinary proceedings from their own governing board. I guess maybe this ties into where I talked earlier about the need to impose offence provisions for health practitioners as well, and perhaps this is one area where that would be imposed, but failure to provide the rights advice may lead to some particular offence that is specified right in the act.
Mr Marchese: Thank you, Ms Huculak, for your presentation. I want to agree with you on the whole point about notice of rights upon finding of incapacity. I should tell you that the majority of deputations agree with you, with the exception of people like the Ontario Medical Association.
Ms Huculak: Why does that not surprise me?
Mr Marchese: I wanted to get to the point soon that you made in the third recommendation as well.
Other than that group of people, the majority said rights notification is a right and an obligation on the part of health practitioners, and I agree. The medical association says that doctors are not lawyers, and I think they pointed out that this is almost a legal matter. What is your response to that kind of response?
Ms Huculak: We're not asking the doctors to explain to them what their rights are, how the appeal works and what the consequences of it may be. All we're asking of them is to tell their patient: "If you don't like what I'm telling you, you have the right to challenge this. If you choose to do so, hire a lawyer or go to legal aid; probably legal aid wouldn't fund this, but you have certain legal rights in this case. If you wish to pursue them, you should go contact your lawyer." So we're not asking them to interpret their rights or to provide them with advice; just to tell them that they exist.
Mr Marchese: I agree. My colleague and I were talking about this, and a number of people were saying that to give rights advice could harm the patient. We were just saying to each other that not to give information to the patient could be harmful to the patient. Would you agree with that?
Ms Huculak: Yes, I would agree with that.
Mr Marchese: On your third point, about offence provisions for health practitioners, I think it's a reasonable thing to do. The medical profession says that what we had in our current bill was very adversarial. I would presume that if we included such a thing as making it an offence with a liability for monetary fine upon conviction for breach of duty under the HCCA by a health practitioner, they would similarly think that this is of course controversial, adversarial, doesn't trust the practitioners and so on. But I think if we apply those standards to substitute decision-making people, why couldn't we do that with health practitioners? I think it's reasonable.
Ms Huculak: Yes, I agree with that.
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Mrs Boyd: On your first point about treatment and defining treatment under clause (g), I agree with you that the reasonable prospect is probably the thing we ought to put in there, because we all know, and as in fact the OMA admitted this morning, in almost any treatment something can go wrong and they need protection as well in terms of that.
I have a different concern about this, though, because there isn't a clear definition of what is treatment and what is called "personal care plan" in here, or "daily activities," which I think is what people want. One of the issues has been around nutrition and hydration for people. What goes on all depends on what side of the fence you sit on. But there are other issues around treatment that really call out for a bit more definition. Would you agree that we need at least some kind of schedules or something attached to this that give us a much better idea about what is treatment according to the act, what is a daily activity and where there might be a crossover?
Ms Huculak: I think that would be helpful. Also, I think it would be helpful because we're asking the health practitioner who proposes the treatment to determine if it is a treatment or not. While in most cases we may be dealing with physicians, we may not be dealing with physicians; they may be people who are coming to it with a different perspective or from a different educational background, so it would probably be useful to have something that is more explicit to everyone who is being asked to make this determination.
Mrs Boyd: Yes, because it's almost a truism that in some cases, where people are close to the end of life, they cease to be offered food. That really becomes a bit of a problem in terms of where that crosses the line into withholding the necessities of life.
Ms Huculak: Yes.
The Chair: Ms Huculak, thank you very much for attending. It indicated a lot of interest from the committee members. I commend you on your presentation.
PEOPLE ADVOCATING FOR CHANGE THROUGH EMPOWERMENT
The Chair: People Advocating for Change Through Empowerment. Mr Len Maki, I understand you're accompanied by Ms McKnight. I thank you for your patience in waiting to be heard. You have half an hour, including questions. Please proceed.
Mr Len Maki: I thank you for this opportunity. I was very interested to hear the discussion that took place beforehand. I'm getting a better sense of why so many people who choose a career in politics are themselves lawyers.
Mr Marchese: Some of them.
Mr Maki: Some of them; not all of them.
I am presenting on behalf of People Advocating for Change Through Empowerment, PACE, for short. PACE is a membership-driven, psychiatric consumer-survivor group. Our definition of a consumer-survivor is an individual who has been hospitalized and/or has used mental health services for psychiatric reasons or has been diagnosed with a psychiatric disability.
PACE welcomes the opportunity to speak to this committee and to this government in regard to Bill 19. We hope this is a sign that the government will have a meaningful dialogue with community groups such as PACE and hope that our comments will be treated with due notice and respect. This comment is made not out of disrespect for the members present, but because one of the ongoing concerns that people with psychiatric disabilities have is a general lack of understanding and respect from members of the public. Inherent in this is also an historic lack of consultation with such individuals and lack of opportunity for involvement in the decision-making process.
Bill 19, an act to amend the Substitute Decisions Act, repeals the Advocacy Act and Consent to Treatment Act and introduces the Health Care Consent Act. In this presentation I will refer to the above as Bill 19. Because so many of the amendments are interconnected, I find it difficult to speak about them in discrete sections. We have no lawyers on the staff at PACE to read this lengthy and complicated legislation. What follows is a presentation based upon the views of the membership of PACE, many of whom have ongoing need of institutional health care facilities, have at times the need to appoint substitute decision-makers or have them appointed for them. Many of the members also face systemic factors, including lack of education opportunities, and therefore have a hard time understanding the significant consequences and ramifications of appointing decision-makers or having knowledge available to them concerning their basic rights, including the right to appeal certain decisions.
The issues relating to advocacy and rights advice are of particular concern to us. We feel that an independent rights adviser or advocate is the only way to truly ensure that objective advice is given. This is not to take away from the well-meant intentions of family members, many of whom are extremely effective and have had to deal with family members' problems or issues for far longer than anyone else. We value their contributions, but it should be remembered that being a member of a family in no way guarantees objectivity or following the wishes of that individual.
One may compare the personal care and treatment wishes with a person's religion. How many of you know of a person who has either renounced their family of origin's faith or has converted to another faith altogether? Their family goes along with this to humour the individual, but in a time of crisis or fatality the family will often conduct religious services within the faith base of their choice, knowing what is best for the person, rationalizing their actions with such thoughts as, "He didn't really meant that. It was only a phase," or, "What he really meant was this." Of course, from their point of view they are right, they are the family, they know best. The individual's wishes, however, are ignored, left aside, given no validity. Historically, people with psychiatric disabilities have had their desires and wishes ignored and left aside.
Individuals' wishes regarding treatment and disbursement of personal property are analogous to religious convictions, with the underlying fact remaining that it should be left to the individuals to decide for themselves as much as possible. Objective third-party advocacy is one of the ways in which to remedy this situation and ensure the individual's wishes towards treatment and personal care are kept in mind. We feel there is a need to have this formal mechanism in place.
I don't know if any of you have ever known someone with a psychiatric disability or if you have ever suffered from any yourself. The concept brings fear and anxiety to many people's minds. It is an image of a psychological nightmare, the image of the lunatic wrapped in a straitjacket which is pervasive in movies, literature and television. It is an historical image which groups like PACE work hard towards dispelling, yet the image remains. It is an image that people do not want to be associated with, for people do not want to lose control. In short, no one wants to be crazy.
The facts, unfortunately, are that people do suffer from psychiatric problems of varying degrees. How this society deals with them in terms of treatment and in terms of basic human rights, including the right to information, is one of the equations which governments and their policymakers must deal with. It is hoped that this is done with compassion and fairness, keeping each citizen's rights in mind.
I would like to ask the indulgence of the members of this committee for a brief time. I would ask that they try to imagine what it must be like to live with a disability, in this instance a psychiatric disability. You may be aware that your disability is going into an active cycle, meaning that you need some form of treatment, and you have taken the appropriate steps to secure treatment. Imagine that treatment decisions begin to be made for you. This is because someone has made an assessment of incapability. You are not informed of this, nor are you given any reason why things are being done to your person, things which are intrusive and to which you personally object.
If you value having control over life, as most human beings do, you may wonder why such things are happening and also wonder why they are happening without your consent or knowledge. It could make one feel hijacked by the health care system. It could also make them think that they are more profoundly sick than diagnosed, for no one has ever asked them any questions regarding permission and no one has told them that a substitute decision-maker has been given legal authority to sanction treatment decisions on their behalf.
No rights advice has been allowed for. Above and beyond the disabling symptoms of your disability, which may leave one in a state of confusion, this is possibly compounded by the side effects of psychotropic drugs used in an effort to treat your illness. Consequently, you have no idea why things are happening or why all your decisions are being made by other people without you knowing it. This scenario is what could happen to a person upon admission under the amendments made through Bill 19.
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The concept of suffering from a psychiatric disability or illness is a frightening concept to most anyone. People do not envy the idea of being at a loss of control of their mental functions or having their thought processes in a state of confusion. Having information regarding decisions being made and rights available to you can and, we feel, does help relieve some of the anxiety associated with being admitted for treatment -- not only for individuals with psychiatric disorders but for any kind of illness.
Just as people have wanted the opportunity to have input on this and other bills this government is enacting, people want and need input and information on all important decisions affecting their lives. In a democratic country such as Canada, one expects such things. People feel disempowered when this opportunity is taken away. When people with psychiatric disabilities feel disempowered, one of the results could very well be despondency and a lack of cooperation with health care providers.
When people feel a sense of control, they respond better to their environment. It could be argued that people could respond less favourably to treatment if they fall into a pattern of despondency, feeling out of touch, disrespected, treated as unimportant. A general feeling of self-worth is necessary in all human beings. This necessary self-worth is undermined by policy decisions which disregard the rights of all people, including those with disabilities of all kinds. It makes people feel worthless, unwanted, uncared for by specific people around them and by society in general.
Fear is one of the biggest issues facing individuals with psychiatric disabilities. Fear of society, fear of specific people around them, fear of their own illness all play into this web of mistrust. People have to work very hard to overcome this disabling emotional state. Providing information to people is one way of easing the fear around treatment and consent issues. When people fear something, they have a natural tendency to avoid it. If there are further reasons to fear an assessment of incapacity, fuelled by the fact that a substitute decision-maker can decide things for you without even the basic dignity of being informed when this happens, it could result in people avoiding going for an assessment even if they know they are getting sick.
If this government wants its citizens to participate, then it must allow them access to information, including information about treatment, and also allow them the basic dignity of informing them when it has been deemed that they are no longer able to make their own decisions. Some form of rights advice is what we would like to see. Discussion on what form of rights advice is available within a cost-effective scheme is a question which the members of PACE would be very interested in being a part of.
There is a concern regarding the story in the February 9 edition of the Toronto Star which, although it does not speak directly about this bill, does relate to the availability of legal services, possibly including rights advice. This is the issue of cutting funding to Ontario's community legal clinics. We believe this would be a mistake and in fact we would endorse the expanded funding of their operations as a possible solution to the issue of how to ensure that rights advice is continually available to vulnerable people, including people with disabilities of all kinds.
It is because we live in a democratic province that these hearings are taking place, and it is because this government is willing to listen and make changes that are necessary for the inherent rights of the person to be recognized and enshrined as a part of the amendments to this bill. This government was elected in a democratic process. As a part of that process, it informed the general public of its views and concerns. The public made an informed choice. What we are asking for is the same thing. We want the ability to make informed choices about treatment and to be informed and advised on a continuing basis when it has been deemed necessary to have others make those choices for us.
There are other specific concerns about the changes that need to be addressed as well.
I would like to ask the members present if they would envy anyone who received a jolt from a cattle prod. I am sure that if you were in a hospital or another type of treatment facility and a health care provider zapped you with a cattle prod or you received some other form of electrical shock as part of treatment, you would question the appropriateness of such pervasive and extreme tactics. Anyone who has accidentally given themselves a shock from a frayed electrical cord knows the sensation of voltage running up your arm. Imagine this as a form of therapy. Imagine that people providing care to you were under no obligation to justify this. This is one of the potential outcomes from the amendments found within Bill 19, specifically subsection 43(5). While we do not feel it is the intent of this government to allow willy-nilly use of such things, we hope you will consider putting legislative safeguards restricting the use of such techniques to only those circumstances where it is absolutely necessary.
We are concerned that consent to treatment in one facility can be transferred to another facility. We believe this should be limited in its application.
We believe that a statement of relationship to the person still be required to be signed by a family member acting as a substitute decision-maker.
We believe it is a mistake to allow health care providers to become guardians for vulnerable people. This has the potential for serious conflict of interest.
One of the positive changes we see is the move to standardize capacity assessments and to control the cost of these assessments.
Overall, we would encourage the committee to review the decision to totally repeal the Advocacy Act, believing that some form of rights advice is essential for people with disabilities in a democratic and just society. We understand the need to be cost-effective in this procedure but hope that this government does not simply throw away all the hard work, time and money already spent by dedicated bureaucrats, community representatives and volunteers, including people from consumer groups like PACE, in establishing the Advocacy Act. We hope that a middle ground can be reached between the government of the day, professional and family groups, many of whom are opposed to the Advocacy Act, and groups like ourselves.
In the final analysis, we all want much of the same thing; we want productive, healthy communities with their citizens acting in a responsible and inclusive manner. Rights of the individual are one of the flagstones of a democratic society. Advocacy is a way of ensuring that the rights of all citizens are heard and respected. It is a way of making sure that people understand the laws under which they are governed, thereby allowing the democratic process to take place.
The Vice-Chair (Mr Ron Johnson): Thank you, Mr Maki, for your presentation. We're going to entertain questions now.
Mrs Caplan: Thank you for a very thoughtful presentation. I'm going to address a couple of the things that you've stated. I thought you made the case extremely well for individuals having the right to be informed and how they react and how people react when they feel powerless and hopeless and helpless. I think that's very instructive and I hope the government is listening, because right now -- and we've heard this from actually a psychiatrist who made a presentation before the committee; he was from Hamilton-it's standard procedure, and it has been for many years, that individuals in a psychiatric facility who are deemed incompetent under the Mental Health Act are told. They engage in a conversation and it hasn't adversely affected their health. While it's difficult, it's an important part of their therapy and wellbeing.
So I think you make the point extremely well, and while there may be other providers who are not used to engaging in those kinds of conversations, and granted it is difficult, I think the government shouldn't fear requiring that obligation from all providers who will have that power, especially given the fact they didn't mention it, but this legislation, section 27, on page 78 of the Health Care Consent Act, frees providers from any liability for any treatment given if they believe it is in good faith. I don't have an objection to that, provided that the other side is the obligation that people be informed and know their rights and be assisted in an appeal, if that's their request. I thought you'd make that point, because you've made it extremely well in your presentation.
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The other concern I have, and you raised it, has to do with faradaic therapy, the use of electroshock. I don't think people realize -- I'm not even sure the government members realize that what they've done in the legislation would allow that therapy outside of a Comsoc facility if any professional deemed it to be a treatment, under the consent act.
While we do have in place standards and protections in the Comsoc facilities, this opens the door to a professional, a psychologist, for example, providing the treatment in his or her office. You might say and I might say that no reasonable person would do that, but there would be no penalty or sanction under this law if they did that. If you don't believe me, check with the lawyers. That's why I believe very strongly that while it's a treatment of last resort and I don't believe in an absolute ban, I do think there are very few cases, particularly the one we heard of the young man who inflicts serious damage on himself --
The Vice-Chair: I'm sorry, we're going to have to move on.
Mrs Caplan: I thank you for your presentation. I hope the government has heard you. I don't have any questions of you. I think you've been very clear.
Mr Marchese: Thank you, Mr Maki, for your presentation. Most of the delegations that have appeared before us in Toronto and here and I'm sure everywhere else have agreed that some sort of advocacy needs to go on and it should be done as part of an obligation of government, and that rights advice is critical and important. Other than the Ontario Medical Association, most people have agreed.
It would seem to me absurd that the government or most of these members would not do something with respect to changes or amendments to this bill, having heard most people say we need something. What most of you are proposing is that if you're going to get rid of advocacy and the commission altogether, then there be some middle ground, whatever that middle ground is. Some of the people talked about having legal clinics provide that. I'm not convinced that is the best route, given that they're losing a great deal of financial support; understaffed as they are, I'm not sure that's the best place to provide it. But the government has a duty to be able to provide what was in the previous government in some form, so I hope they're hearing you.
Another thing that many other people have spoken to is that many believe the statement of relationship to the person should still be required to be signed by a family member, as the way it existed. What it does, as some other people have said, is to trigger the sense of duty and obligation on the part of the other person in terms of what he or she is assuming. So you're not the first, you're one of many saying, "Retain that statement of relationship."
Mr Maki: I'm glad to hear that.
Mr Marchese: On the conflict-of-interest issue, that too is something that most people have raised with respect to caregivers, so you're not the first.
On the whole issue of electric shock, many have spoken about that as well. The reason it's important for us is that it's people like you who have this experience and have worked with people who have these experiences, and if we don't listen to you, who should we be listening to? We're happy that you're making these interventions, because we are or should be informed by your experiences.
The Vice-Chair: Your party has a minute left, if you want another quick question.
Mrs Caplan: Ask if they were consulted.
Mrs Boyd: We don't need to ask if you were consulted, because you weren't, were you?
I too want to thank you for being very frank and for giving us a vision from the eyes of the people with whom you work all the time. That is very helpful.
On the faradaic stimulation issue, Mrs Caplan is quite right: Taking this away means it could happen anywhere. Quite frankly, having been responsible for stopping this in the particular facilities, there was always an urge to expand it, not to restrict it, because it is a way of controlling behaviour that appears to work very quickly.
When we look at some of the psychiatric treatments like initiating sexual experiences in order to get people over phobias and using electric shock therapy to control behaviours, using some of the other methods of ego destruction that have been used in psychiatry over the years, we know there are so-called treatments that may look as though they work to make people compliant but in fact are very destructive. I'm very glad you've made the statements that you've made.
Mr Maki: I would be very interested when and if the government has any sort of user-friendly guidelines when this legislation is in its final form. I would certainly encourage that so people such as our membership could have something clear to read and understand the total package involved.
Mr Clement: Thank you very much for being part of our process here. In fact, to perhaps recharacterize the record a bit, we on the government side consider this an integral part of our consultation. Rather than hold consultations behind closed doors with certain designated persons, we're having a public consultation. I want to thank you for being part of it, and please consider yourself part of the consultation, because we're listening very, very closely to what you have to say.
I just want to touch upon a couple of points. First, with respect to your submissions on electric shock treatments, faradaic stimulation, I want to thank you very much for your comments on that. It's certainly an area that has a lot of emotion and something we want to get right.
Typically, legislation of this sort can be permissive and then the government has the ability through consultation to be more restrictive once the general rule is in place in the legislation. So it may in fact be the case that we will be in a position to restrict that sort of treatment to specific facilities, like Comsoc facilities, or restricted to certain types of individuals in the treatment and care field. We would love to have more of your views on that. The minister has the power to regulate once the general rule is in place and you can start restricting it to specific circumstances, and we may be taking that into consideration.
With respect to your very forceful points on advocacy and rights advice, I couldn't agree with you more that it's an essential component of a free and democratic society. In fact, I would say it's a moral component. It's what makes us humans and full of morality, to have that moral duty there.
From your perspective, is it possible to have that moral duty more in terms of friends and family, with perhaps the government there to ensure that there's some training, some education, some backup, but that the intent is that it should be more in the framework of private individuals helping other private individuals? Is that not a way to construct this?
Mr Maki: As the individual representing the AIDS committee pointed out, I certainly encourage the concept of friends acting on that behalf, but once you get into family members, you can't always guarantee that the person is going to act in an objective fashion.
Mr Clement: Quite right, and you can't always guarantee that a government-sponsored or -hired person would act in the same way either. Really, we're all individuals and none of us corners the market on being correct 100% of the time.
I come back to this. As an MPP, all of us around the table, every time we're in our community or constituency offices, we have a long train of people who come in and say, "I thought this government was here to help me, but person X in bureau Y has done this to me and it's totally unjust." I get a bit sceptical when someone says, "I'm from the government and I'm here to help." It doesn't always work out that way. That's why I want to keep injecting in there the friends and the family. They're the ones who love the person or who know about the person's treatment. If there are exceptions to that, which there always are, let's deal with those exceptions, but let's not make the blanket rule. Is that an unfair characterization?
Mr Maki: I agree that one has to be careful, and I'd return to the point I made that family members cannot always be guaranteed to be that objective individual. In essence, what you're saying is that neither can the government, and that's an interesting point. I don't quite know how to respond to that.
Mr Clement: That's fair. Maybe we could work together to figure this out.
The Vice-Chair: I want to thank both of you for your presentation. It was certainly appreciated.
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BARBARA ECCLES
The Vice-Chair: Our final submission of the day will be from Barbara Eccles. Good afternoon. You have 30 minutes for your presentation, and you may want to leave some time at the end for some questions.
Ms Barbara Eccles: If I'm lucky there will be lots of time at the end for questions.
I'd like to start by telling you a little about my background, for what it's worth. I was called to the Ontario bar on Wednesday --
Mrs Caplan: Congratulations.
Ms Eccles: Thank you. I'm not looking for laurels here, but --
Mr Klees: You're looking for a job, right?
Ms Eccles: That's right. I've been a lawyer for five days, but all through law school I've had an interest in the proposed changes to the health care legislation, the Consent to Treatment Act, the Advocacy Act and the Substitute Decisions Act. I studied what was then proposed legislation when I was in law school. Now that Bill 19 has come out, I had a look through that and had an interest in that, and since I don't have to write law school papers any more, I thought I'd write something for you people.
I prepared a short, five-page submission which basically outlines some suggestions I have for mostly nitty-gritty changes to the legislation, changes to bits of the wording to try to make it what in my opinion would be a bit more workable.
I'd like to start by saying there's a particular section of the Health Care Consent Act which is a very good change to see, and that's in section 16. Under the Consent to Treatment Act, I understand it used to be that if there were a finding of incapacity, the health practitioner would have to wait until an appeal period had run out before they could treat. I see that's been removed under section 16 of the HCCA, which I see as a positive change, because it will hopefully make the provision of health care a lot more efficient. Beds won't be sitting full while the health practitioners cannot treat. I think that's a positive change.
I've only set out five points in my submission. There is a lot of other things, but I know many people are talking about the removal of the rights advice, so I won't get into those issues.
I'd like to talk about five sections. First of all, section 18(1)5. That's the section regarding the hierarchy of substitute decision-makers under the Consent to Treatment Act, particularly paragraph 5, dealing with custodial versus access parents. I'll talk about that first.
Then I'd like to get into section 35.1, the proposed new section of the Substitute Decisions Act regarding the guardian of property and their treatment of property when the incapable person has written a will.
The third item I'd like to discuss is the role of the Consent and Capacity Board, the new name of the board under the new legislation, and I'd like to submit that the role of this board may be expanded to give them more things to keep them busy.
The fourth point I'd like to talk about is section 23 of the HCCA regarding emergency treatment, specifically the provision of emergency treatment to apparently capable people.
The last point I'd like to talk about is the three sections of the HCCA regarding when a health practitioner believes a substitute decision-maker has not acted in accordance with the act.
Getting right into it -- or should I wait till the phone stops --
Mrs Caplan: Just ignore the phone.
Mrs Boyd: It's not for you.
Ms Eccles: I hope not. They can take a message.
I've set out the legislation in my paper. Page 1 is paragraph 18(1)5 of the Health Care Consent Act, which is on page 73 of the bill. It says that the parents of an incapable child -- it must be, since it's a parent -- can consent to or refuse treatment on the child's behalf. However, it says, "this paragraph does not include a parent who has only a right of access." Paragraph 6 goes on to say that a parent of an incapable person who only has a right of access can also give consent, so the way the scheme seems to be that the custodial parent has priority over the access parent, regardless of what any separation agreement may say.
In the interests of the right, hopefully, of people to order their own lives, it might be nice to change this section somewhat so the parents are allowed to change the order in a separation agreement so that if, say, the access parent has the child on the weekends and the custodial parent has the child during the weekdays, the access parent, if the parents so desire, will be able to make decisions on the child's behalf when the access parent has the children.
The suggested revision I've set out on page 2 of my paper is just to add a line in paragraphs 5 and 6 saying, "unless otherwise provided by court order or written separation agreement." This allows the parties to organize their lives in a way that's a little different from the strict thing set out in the legislation. That's the first point. I'm just going to highlight them rather quickly so we leave time for you to ask me questions that I can't answer.
Moving on to section 35.1 of the Substitute Decisions Act, the proposed section set out at section 22 of Bill 19, it deals with the duties of the guardian of property, if there is a guardian of property in place. It states, "A guardian of property shall not dispose of property that the guardian knows is subject to a specific testamentary gift in the incapable person's will." There are three points I'd like to make here. The first one is that the definition of "specific testamentary gift" is not necessarily very clear, and to avoid a plethora of litigation and more money in lawyers' pockets, it might be nice to hone the definition of "specific testamentary gift" a little so we know whether that means a specific gift of property. Does the piece of property have to be mentioned in the will? Or if there's a residual clause in the will giving anything left over to little Joey, it doesn't look like that should be included in the definition of "specific testamentary gift," but it's not quite clear. It just leaves a little bit of uncertainty in the legislation.
The other interpretation of that, we were thinking, is that it could mean a gift to a specific person. I've set out an example in my paper on the bottom of page 2, "My CD collection to my nieces and nephews." Is that a specific testamentary gift, or is the guardian allowed to liquidate the CD collection in order to pay the bills? It's not quite clear, and it might be nice if there was a definition of "specific testamentary gift" offered. I haven't gone as far as drafting one, because I didn't know how we could draft it. This is just a suggestion for the committee.
A little bit more substantial, it says that if a guardian of property knows there's a will, the guardian of property can't dispose of the property unless they meet the other provisions of the section. I would like to suggest that the legislation be amended to make this a more positive duty on the guardian of property to find out if there is a will, because it's sort of an empty protection if the guardian of property has no duty to look and see if there is a will. This may be accomplished through fiduciary duties of guardians and that kind of stuff but it might be clearer if it's made --
Interruption.
Am I over?
Mr Clement: You are being defeated by technology.
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Ms Eccles: Yes. It might be a little bit more clear and easier to interpret if it was set out in there, so I have a proposed amendment on the top of page 3 of my paper. The words are added: "A guardian of property shall not dispose of property that the guardian knows or ought reasonably to have known is subject to a specific testamentary gift." That will accomplish, I hope, that goal of putting a little bit more duty on the guardian to be careful.
I'm not going to talk about the third point that I've put in my paper. You can read that. It's not really clear in my head -- well, I'll bring it up. If you look at subsections 35.1(1) and (2), the effect of these two subsections together could be an unequal division of property to the beneficiaries. The example I'm thinking of is if a parent, in their will, leaves their house to one child and all the money to another child, under this section the guardian of property can get rid of all the money in order to fulfil his duties, and it seems like they have to do that before liquidating the property and selling the property off to pay for the bills and the other duties that the guardian of property has to fulfil. The result of this could be an unequal division of property in this circumstance where the testator has drafted their will in that way. I just wanted to bring this up to the committee that if this was the intended result of this section, then that's good, but if it wasn't, the committee may want to revisit that particular section.
The third thing I'd like to discuss is the role of the Consent and Capacity Review Board now, and the name will be the Consent and Capacity Board under the new legislation. As the committee may be aware, there's a general move in society towards giving more responsibility to administrative tribunals and that's what has been done in this case by creating a Consent and Capacity Review Board. The Consent and Capacity Review Board is assumed to have specific expertise or to develop the expertise throughout their decision-making process, in assessing incapacity and other aspects that they have to deal with.
It might be nice, in order to utilize this expertise, to transfer more decision-making powers to the Consent and Capacity Board and away from the courts. I've listed a few on page 3, the last paragraph of my paper, mostly decisions which are made by the courts under the existing Substitute Decisions Act and also under the proposed Substitute Decisions Act, things like appeal of the refusal of the public guardian and trustee to issue a certificate for statutory guardianship or an application to appoint a guardian of property or a guardian of personal care.
These decisions may be more appropriately made by the Consent and Capacity Board instead of the courts. This will have a couple of benefits such as I've already mentioned, utilizing the expertise of the Consent and Capacity Board; also reducing costs of applications to be appointed guardian, which can get rather expensive if you have to go to court with an application.
My fourth point: I'd like to draw the committee's attention to section 23 of the HCCA, and specifically clause 23(3)(e). This section deals with the ability of a health practitioner to administer mostly emergency treatment to an apparently capable person if there is some barrier to getting consent such as a language barrier. The health practitioner, according to subsection (3), is able to administer the emergency treatment if they satisfy the five criteria listed in subsection (3), and I'd like to focus specifically on clause (e), which states that the health practitioner may treat if there is no reason to believe that the person does not want the treatment.
In my submission, this is a bit too strict of a test to put on the health practitioner and may result in people not receiving emergency treatment who would not have refused the treatment. The example I have in mind is if there's a person with a language barrier who is a capable person but can't understand what's going on because they can't understand the language, and somebody tries to stick a needle in their arm and they flail around and push them out of the way. Is this a reason to believe that the person is refusing the treatment? I'm not sure. You would think that a court would say it wasn't, but it may put a doubt in the health practitioner's mind.
I just would suggest a revision, on page 5 of my paper: instead of saying "there is no reason to believe that the person does not want the treatment," to change it to "it is reasonable to believe that the person does not wish to refuse the treatment." This allows a health practitioner to still treat, even if there's just an inkling of a doubt that the person pushes the needle out of the way. That might be a nice revision.
The last point I'd like to bring up: I'll just draw the committee's attention to subsection 35(1) of the Health Care Consent Act, also section 52 and section 67, which contain very similar provisions. This one states that if consent to treatment is given or refused by a substitute decision-maker and the health practitioner is of the opinion that the substitute decision-maker did not follow the steps that they're supposed to follow in coming to their decision, then the substitute decision-maker may apply to the Consent and Capacity Board for whatever: to appeal, to have the substitute decision-maker removed or to have a different decision made.
It's my submission here that again the test is a little bit too lax. Just to backtrack a little bit, under the common law, as I'm sure you all know, health practitioners have a fiduciary duty to their patients to not kill them, to treat them properly and make sure that they get better. Are there any doctors here? I hope I have that right. That's not legal advice, mind you.
They're under a fiduciary duty, common law, that's outside of this statute. Subsection 35(1) and sections 52 and 67 give the health practitioner a discretion. They say they may apply to the board if they think the substitute decision-maker has done something fishy. It may be that this section, when you put it together with the common law fiduciary duty, imposes a higher standard on the doctor or the health practitioner to apply to the board if they think there's something fishy going on.
In light of that -- and the law's not there, because the act isn't in place yet; we don't have any court decisions on it -- it may be apropos to change the test and make it more of an objective test instead of a subjective test. Instead of saying, if the doctor is of the opinion that the substitute decision-maker blah, blah, blah, you may want to say it's reasonable, if the doctor is of the opinion on some reasonable basis that the substitute decision-maker did not follow. That might make the sections a little bit more workable from the health practitioner's point of view.
Those are my submissions. If there are any questions, I'll see if I can answer them.
Mrs Boyd: You may have only been a lawyer for five days, but I can tell you I've had many briefings from lawyers. This was very succinct and clear.
On your first point, I think I would agree with the suggestion you're making. Custody and access issues are tough enough and the kinds of disputes that occur are tough enough, and very often those disputes are around such things as making decisions about a child's health care; not so much where the child lives but those decisions around that kind of thing.
Your addition of "unless otherwise provided by court order or written separation agreement" I think is an excellent one because that would give more freedom, particularly in these days when we're trying to get people to fashion these agreements without going to court and to do it in an alternative manner. I think it might be helpful.
I can think of many cases where children, for example, spend 10 months of the year with one parent in one province and two months in another province with another parent. If the non-custodial parent happens to be in Ontario and that child is here, we'd really like that parent to be able to give consent to treatment while that child is here. I think that's a very reasonable kind of a situation.
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On your disposal of property, I suspect that the disposal of a testamentary gift was probably largely to try and protect property like a family farm or a specific piece of jewellery or a painting or something like that. I think you're right that it may well lead to an unequal division, not so much on insurance, because of course unless you name the estate the beneficiary, that wouldn't be a problem because you'd be naming a person. But certainly people sometimes leave their investment funds to one child and property to another, and you're right that it could end up being unequal.
I suspect that's a real challenge for the bar association and the law society in terms of making sure that lawyers, in helping people make wills, understand that's the situation, and in reviewing wills. I'm not sure there's any other way, but putting in "ought reasonably to have known" is probably a good protection in terms of knowing whether or not a will occurred.
On the role of the Consent and Capacity Board, I would agree that one of the big challenges with this kind of an act is the educational role, and particularly the educational role with health professionals, who have tended to be a bit resistant around a lot of this. I would certainly concur with you that a good use of those experts might well be in that way and in conjunction with the various colleges involved.
On emergency treatment, I don't know. I understand what you're saying, but it's a little bit difficult to think that it's really necessary in a lot of cases.
I do agree, though, in (e) with your opinion on the substitute decision-maker. There ought to be some reasonable basis for this belief. If you have a physician who will never, ever agree to a do-no-resuscitate order or to a palliative care order, and a substitute decision-maker who knows clearly that that's the wish of the person, you may get into this without a reasonable belief that they're actually contravening the act. They're just not doing what the physician wants to do. So I think you've got a good point there.
The Vice-Chair: Thank you, Mrs Boyd. We're going to move to the government side now. I've got Klees, Clement and Parker with only about four minutes, so you have to juggle the time.
Mr Klees: We'll just talk fast. Congratulations to you on being called to the bar. You've done a great job here today.
I'd like to quickly address your first point with regard to the access parent. I think, for clarification, I'd like to draw your attention to subsection 18(4), which was really intended I think to address the issue you're concerned about. It indicates that despite subsection (3), which is the section you're dealing with, anyone else will in fact have the authority to give consent.
You're dealing with a situation here where you might have an access parent and a custodial parent where there isn't contention between the two. Certainly, if the access parent shows up at the hospital with the child, that access parent, under the terms of this legislation, has the right to make that substitute decision. We'll certainly look at your proposed wording, but I think what you're trying to do has been caught in this subsection (4). Maybe you can have another look at it as well and comment to us.
Ms Eccles: I've thought about that too. Your assumption is that there is no contention between the two. If it is a contentious situation, which it is in many divorce and separations, that's where the problem would come in.
Mr Klees: Actually, with regard to that, that's one of the reasons it is worded as it is here in terms of priority, because what we're trying to do is avoid an extended conflict between two parents. If there is a person who has custody, then if there is not an agreement between the two, let's make sure that one parent has the right to make the decision so the treatment can proceed. It's a very complex issue, but we want to do what's right for the child here.
Mr Clement: On clause 23(3)(e), which you were discussing on pages 4 and 5 of your brief, just a quick point: In clause (e) in Bill 19 there's a double negative, and I notice that yours is not a double negative. I thought maybe the double negative would give us a little bit of latitude for the practitioner, but I'm wondering whether it's possible that yours is more restrictive than a double negative.
Ms Eccles: Certainly. It's certainly possible. Double negatives are always quite confusing in legislation to anybody but somebody who deals with this all the time.
Mr Clement: Do I go either way on this one?
Ms Eccles: I think mine is less because it's putting a reasonableness in instead of an absolute. Clause (e) seems more of an absolute.
Mr Clement: Okay. I was just thinking if all you needed was one scintilla of evidence that they didn't want the treatment and that test would be made, whereas here he's got to reasonably try to figure out one way or the other.
Ms Eccles: I guess here I'm looking at if from the doctor's point of view and the provision of treatment, with the assumption that the provision of treatment is good. The amendment was suggested so that more emergency treatment could be --
The Vice-Chair: Thank you. I'm sorry, we do have to move on to the Liberal caucus.
Mr Duncan: My colleague Mike Gravelle, who has been here all day and has some constituency meetings -- we caught each other in the hall -- had a couple of questions related to section (c) on pages 3 and 4. First of all, he wanted to comment that the second-last paragraph, where you talk about the Consent and Capacity Board's expanded powers in education, we fully concur with that and think it's quite consistent with the Australian model. We think makes a lot of sense.
The one concern we had with the first part of your presentation, that section, the expanded powers and taking in all kinds of new things that are currently handled by the General Division, we'd be a little bit concerned -- I'd like your comments on this. Perhaps it's unfair because you're a new lawyer and new lawyers would benefit from appeal tribunals that have more powers -- but we'd be a little bit worried about creating more of a quasi-judicial body that wouldn't be as accessible, particularly to the types of folks who would access it.
I think, for example, of a tribunal like the Workers' Compensation Appeals Tribunal, which has evolved into a quasi-courtroom where there are rules of evidence and precedent and all kinds of problems that were never envisioned by Weiler when he wrote his report on that. I wonder if you could comment on that and, as somebody who's beginning a long and I'm sure successful practice of law, would you not be concerned that by expanding the roles and powers you may be creating another form of court that wouldn't be accessible to the people who really need decisions?
Ms Eccles: I don't think so in this case, because the way the Consent and Capacity Review Board stands right now, it has the power to make rules under the SPPA, the Statutory Powers Procedure Act. So if they want to right now, subject to any legislative changes that come out of this committee, they can go to the quasi-judicial model right now. The proposal here is to just give them some more things to do basically.
Mr Duncan: You don't think if they had more things to do they'd have to, through the SPPA, take on to themselves a more rigid process and set of procedures governing their conduct and their decision-making?
Ms Eccles: Not necessarily, if the funding is there to increase the numbers on the board. The question is, are we going to pour the money into the Ontario Court (General Division) in order to do the work, or are we going to give it to the Consent and Capacity Board to do the work? Somebody has to do it, and traditionally, administrative tribunals are less rigid and less court-like than a court. Right now, the things that I've listed that are under the SDA are adjudicated in a very court-like setting, and by moving it to the Consent and Capacity Board, in my opinion anyway, it would be increasing access to it.
The Vice-Chair: Thank you very much, Ms Eccles. That will conclude your presentation for today. We are out of time. On behalf of the committee, I want to thank you very much. This committee is now adjourned until tomorrow morning at 9 am in Ottawa.
The committee adjourned at 1530.