Proceedings of the Subcommittee to
Update "Of Life and Death"
Issue 5 - Evidence
OTTAWA, Tuesday, February 29, 2000
The Subcommittee to Update "Of Life and Death" of the Standing Senate Committee on Social Affairs, Science and Technology met this day at 8:30 a.m. to examine the developments since the tabling in June 1995 of the final report of the Special Senate Committee on Euthanasia and Assisted Suicide, entitled "Of Life and Death."
Senator Sharon Carstairs (Chairman) in the Chair.
[English]
The Chairman: Honourable senators, today is our fifth day of hearings under our mandate to update the recommendations of the 1995 report on euthanasia and assisted suicide entitled "Of Life and Death". I would remind honourable senators, witnesses and those watching that this committee is not reopening the debate on assisted suicide and euthanasia. It is dealing strictly with the areas of the report where the original committee made unanimous recommendations. I ask you to bear that in mind as we proceed.
Before us today is Marion Chapman, Chair, "Of Life and Death" Update Task Force from the Council on Aging of Ottawa-Carleton. She is joined by Professor David Bernhardt, President of Canadian Council on Aging. We also have Dr. Douglas Martin from the University of Toronto. I welcome you all to our committee. I must also tell you that we have a special problem today, in that an emergency caucus has been called for ten o'clock, and we must finish shortly before then in order that Liberal members can get to that caucus.
Let us begin with Ms Chapman.
Ms Marian Chapman, Chair, "Of Life and Death" Update Task Force, Council on Aging of Ottawa-Carleton: Madam Chair and honourable senators, the Council on Aging is honoured to be invited once again to address your committee. We called together the group who met five years ago. A few were too frail, and the two francophone members were away, but we remain 12 strong with the addition of the present president and vice-president.
One true story set the stage for our discussion on advance directives, and I would ask Professor Bernhardt to share it with you.
Professor David Bernhardt, President, Council on Aging of Ottawa-Carleton: I am, as has been mentioned, President of the Council on Aging of Ottawa-Carleton, and for the past 35 years I have been a member of the Psychology Department of Carleton University. I am here to support Ms Chapman, our past president, in her presentation, which, as President of the Council on Aging, I have approved and authorized.
For the past 18 years, my mother lived in a seniors' residence in Toronto with some 200 other seniors. Unlike most of the residents there, she had signed an advance directive that, among other things, included directions not to resuscitate. In August of 1999, shortly before her ninety-sixth birthday, as she returned from the dining room outside the nurses' station, where her advance directive was housed, she dropped dead. An ambulance was called and within minutes the paramedics arrived. For the next hour, they attempted unsuccessfully to revive her.
This story illustrates two of the significant concerns of our presentation: that most seniors have not set up advance directives and that, even when they are set up, they are not always followed. As Ms Chapman has said, this particular story was one that we turned to repeatedly as we went through our deliberations.
Ms Chapman: The Council on Aging of Ottawa-Carleton is a bilingual, non-profit, voluntary organization dedicated to enhancing the quality of life for all seniors in Ottawa-Carleton. The council works with and for seniors to voice issues and concerns to all levels of government and to the general public.
In 1995, the Special Senate Committee on Euthanasia and Assisted Suicide held hearings on issues related to death and dying. The Council on Aging of Ottawa-Carleton was pleased to participate in those hearings. At that time, our brief discussed such issues as palliative care, advance directives, individual rights, and the law and legal options. We made recommendations to the committee on those issues.
Today, it is our understanding that the focus of this hearing is on advance directives. It has been useful for us to examine our original position in relation to the recommendations in the report and in relation to the Ontario provincial legislation, the Health Care Consent Act of 1996.
In 1995, we presented principles to guide discussion, and I hope there is time to read them. I feel they are just as significant now as they were then, and they really apply to the advance directives. The council has the basic belief that every human being of adult years and sound mind has the right to determine what shall be done with his or her own person. From this, the Council developed the following 10 principles:
1. We believe in the inherent worth and dignity of every person;
2. We believe in justice, equity and compassion in human relations;
3. We support and promote the concepts of autonomy, independence and informed choice;
4. We acknowledge the diversity of the senior population in relation to culture, religious beliefs and language, and we respect the rights of individuals to make individual decisions based on these realities, which is particularly important as our population is changing;
5. We believe that seniors should be informed regarding all aspects of issues that impact on their well-being in order that they may make informed choices regarding the physical, mental and social aspects of their treatment and care;
6. We believe that individuals have the right to expect a death with the best pain control possible;
7. We believe that all seniors have the right to make decisions regarding a dignified dying process and death;
8. We recognize that there are differences in individuals' perceptions of what constitutes quality of life;
9. We believe that all individuals with a terminal illness should have access to palliative care services that include skilled, compassionate care and pain control; and
10. We believe that if persons are not able to make decisions for themselves, that their committee, a person to whom the care of a mentally incompetent person or his or her property was entrusted by a court, or attorney for personal care be given adequate information, counselling and support in making these decisions.
As people on the committee commented on our brief, I received many phone calls saying how important that support was, both during the process and after any decisions are made. We still believe that any discussion on advance directives must follow these principles.
With respect to the recommendations in your report "Of Life and Death", our 1995 brief to the Special Senate Committee spoke to the issue of advance directives and the importance of recognizing an individual's wishes regarding level of care and the importance of full information regarding advance directives for the individual, his or her family, the attending physician, and any institution involved.
We recommended that advance directives be enshrined in provincial legislation across Canada to facilitate the individual's wishes concerning either the level of care or the withholding or withdrawal of treatment as he or she reaches the terminal stages of life. We were pleased to see your report's recommendations, which I will cite again:
The committee recommends:
those provinces and territories that do not have advance directive legislation adopt such legislation.
the provinces and territories establish a protocol to recognize advance directives executed in other provinces and territories.
Where is the Council on Aging today? The council still adheres to its 1995 recommendation in respect of the assured availability of advance directives in every province and territory and, as a consequence, the recognition of advance directives from other provinces and territories. In Ontario in 1996 the Health Care Consent Act was adopted; it recognized and set conditions for the use of advance directives. The Council on Aging supports the principles contained in this legislation as an important step toward facilitating an individual's wishes about the conduct of the final stages of his or her life. In particular, the legislation covered the following principles, and we list only a few:
An individual has the right to choose treatment, including withholding or withdrawal of treatment and levels of care, to choose admission to a care facility and to choose personal assistant services;
The right to choose is based on informed consent and conditions to determine if appropriate consent was given. It must be related to treatment, be informed, be voluntary, and not be the result of fraud or misrepresentation;
Competency is defined as the ability to understand information and to appreciate the consequences of treatment. Recognition is given to competency in some areas and not in others;
Provision is made for situations of incompetency through the use of advance directives, either through instruction directives, or proxy directives, or through surrogate decision-makers;
A "best interests judgment" protocol is established for surrogate decision-makers in order to reflect the values and beliefs of the individual concerned, and to consider such factors as whether treatment is to improve, to maintain, or slow the deterioration of the individual, encompassing as well whether treatment could be used to relieve suffering even it means the shortening of life; and
The legislation provides for a process to recognize loss of competency, return of competency, and the right to change instructions.
As a result, there were certain issues that the Council on Aging addressed. The Council on Aging, however, is concerned about provisions in the legislation permitting health care professionals to take over treatment of an individual in emergency situations contrary to his or her explicit instructions. Here a mechanism should be developed to ensure that the individual's explicit wishes are respected in these circumstances.
Attached as an appendix to our brief is a sample of a series of possible advance directives provided to palliative care patients at the Sisters of Charity of Ottawa Health Service. They illustrate the range of choices for an individual in the terminal stages of life. I will not read those, but they are there for your information.
The Council on Aging remains concerned about the issue of portability of advance directives, that each province and territory recognize properly executed advance directives from other provinces and territories. Portability of advance directives between sites -- home, hospital, institutions -- is essential in order to maintain a consistent level of care. This is an important issue that continues to need attention, and we ask that your report emphasize this.
However, an equally important issue is the need for public education about choices regarding the final stages of life, choices that go beyond simply having a will and an arranged funeral. Through public education, the value of an advance directive can be reinforced. For the individual this means that his or her wishes will be respected. For family and caregivers the stress of making decisions at a time of uncertainty can be avoided. This information -- and we are thinking in terms of federal initiatives -- could be transmitted through inserts with Old Age Security pension cheques or Revenue Canada inserts, for example.
The final issue addressed by the Council on Aging concerns the availability of information contained in the advance directives to those who must act on it. The individual, or his or her substitute decision-maker, has the responsibility to inform health care professionals and care facilities of the existence of an advance directive. This can be of critical importance in case of emergencies. The Council on Aging recommends the development of a recognizable wallet-sized card or bracelet, carried or worn at all times, that would outline the individual's wishes or where that information can be found.
In our technological age one would think one could do these things. Good communication between the individual, the family, the substitute decision-maker, the physician, health care providers and the lawyer, who is drawing up these directives, is essential both in the development of an advance directive and in its implementation.
In summary, in updating its 1995 deliberations on advance directives:
The Council on Aging reaffirms its original recommendation;
The Council on Aging supports the recommendations concerning advance directives contained in the Senate committee report "Of Life and Death";
The Council on Aging supports the portability of advance directives, both between provinces and territories and between sites -- homes, hospitals, institutions;
The Council on Aging recommends clarification regarding the use of advance directives in emergency situations so that an individual's wishes may be respected;
The Council on Aging recommends the development of a public education campaign to encourage the use of advance directives; and
The Council on Aging recommends the development of a means of readily accessing the information in an advance directive.
Dr. Douglas K. Martin, Research Associate, Joint Centre for Bioethics, University of Toronto: Madam Chairman, honourable senators, it is a great privilege for me to address you today concerning advance care planning and its role in Canadian policy regarding end-of-life care. My statement will consist of two parts. First, I will review the meaning and purpose of advance care planning. Second, I will make recommendations for your consideration.
Quality in end-of-life care is increasingly recognized as a health care issue that deserves more attention. Four in ten people die in severe pain. Incurably ill patients with advance dementia receive non-palliative treatments. Improving the quality of care available to the 220,000 of our fellow Canadians who die each year is a moral imperative.
Advance care planning is an important part of initiatives to improve end-of-life care. Advance care planning may, and often does, include written advance directive forms. The concerns associated with advance directive forms are well documented. People like them, but, they do not use them. Interventions have increased the use of advance directive forms, but only to modest levels. When decisions need to be made, advance directive forms are difficult to interpret. The key question is "Why?" One answer may be that our traditional understanding of advance care planning was not rooted in the needs and experiences of patients.
Traditionally, advance care planning was assumed to help people prepare for treatment decisions in times of incapacity, to be based on the ethical principle of autonomy, to focus on the completion of written advance directive forms, and to take place within the context of the physician-patient relationship. In a series of research studies at the University of Toronto, we asked patients who were involved in studies of advance care planning what it meant to them. From the perspective of patients, advance care planning helps patients prepare for death. It is influenced by social relationships, is a process of communication, and takes place in the context of people and their loved ones.
From the perspective of patients, advance care planning helps people prepare for death and dying. People in our society are struggling to find ways to cope with death. Once a central ritual of social and religious life, death has been privatized, desacralized and hidden behind institutional walls.
Advance care planning can help people face death and prepare for dying, which from the patient's perspective means three things: achieving a sense of control, relieving burdens on loved ones, and strengthening relationships with loved ones.
Advance care planning helps people achieve a sense of control by helping them focus on the larger issues related to dying. Autonomy is central to advance care planning but not primarily in the sense of micromanaging each treatment decision. Emphasizing informed consent for each treatment decision is probably a way to avoid confronting the larger issue of death and dying. Although informed content for treatments is legally required and therefore necessary, it is not sufficient. Patients want a voice in their end-of-life care rather than control over each treatment decision.
Advance care planning helps people relieve burdens on loved ones. Patients fear that their dying may place upon their loved ones three burdens: witnessing their death, providing physical care, and substitute decision-making for life-sustaining treatments.
Advance care planning helps people relieve burdens on their loved ones by helping determine settings for care and limits for life-sustaining treatments. It helps prepare loved ones who may serve as substitute decision-makers in a crisis.
Advance care planning helps people strengthen relationships with loved ones. Facing death in the context of loved ones, may be an important redeeming accomplishment. People live in a web of social ties and often fear dying in isolation. Dying offers important opportunities for growth, intimacy, reconciliation and closure in relationships.
To summarize, advance care planning is a process of communication that helps people prepare for death in the context of their loved ones. However, often when we think of advance care planning we think of advance directive forms. So what is the role of the advance directive form?
From the patient's perspective an advance directive form is not the central or defining feature of advance care planning. Advance care planning is a process of communication, and advance directive forms are best viewed as an assisting device embedded in the advance care planning process.
Many people consider themselves satisfied with their advance care planning without the completion of an advance directive form. They use advance care planning to prepare for dying and are often satisfied that discussions achieve that goal.
Advance directive forms can facilitate advance care planning by serving as educational tools or worksheets that can guide discussions about death and end-of-life care. Thus, an advance directive form is not simply a legal document that records a person's proxy choice and treatment preferences. In addition, when substitute decision-makers must make difficult decisions concerning life-sustaining treatments, advance directive forms can provide guidance and support, which may mitigate any guilt decision-makers might experience over their decisions.
However, advance care planning is only one piece in the broader picture of end-of-life care. Your 1995 report "Of Life and Death" was an important benchmark in the development of quality end-of-life care in Canada because it dealt with advance care planning and also three other topics of clear importance to Canadians who are dying -- namely, palliative care, pain control and sedation, and withholding and withdrawing life-sustaining treatments.
In the context of research conducted at the University of Toronto, dying patients repeatedly told us that they define quality end-of-life care as: adequate pain and symptom control; appropriate use of life-sustaining treatments; and support of patients and families. From the perspective of patients, "Of Life and Death" was right on target.
"Of Life and Death" was also extremely valuable because it reinforced the critical distinction between these important issues in quality end-of-life care, on the one hand, and euthanasia and assisted suicide, which are not important to, and may detract from, quality end-of-life care on the other hand.
Let me now turn to what the Senate of Canada can do to help improve end-of-life care for the 220,000 Canadians who die each year.
First, when you update "Of Life and Death," include a chapter that draws together issues in pain and symptom control, appropriate use of life-sustaining treatments and support for patients and families into a coherent, conceptual framework of quality end-of-life care in Canada. This single, unified conceptual framework can then ground the development of indicators of quality end-of-life care and, subsequently, strategies to achieve them.
Second, when you update "Of Life and Death," ensure that the importance and role of advance directive forms are put in their proper context. Although recognized in legislation, advance directive forms are not simply legal documents that record a patient's preferences. They are primarily tools that can facilitate discussions between people and their loved ones, and they may provide guidance and support for substitute decision-makers who must make difficult decisions regarding life-sustaining treatments.
In your update, emphasize that patients consider advance directive forms neither necessary nor sufficient. Therefore, advance directive forms should not be mandatory, and advance care planning should not be evaluated by rates of advance directive form completion. From the patient's perspective, advance care planning is a process of communication between people and their loved ones that helps them face death and prepare for dying.
In closing, let me say thank you again for the privilege of speaking to you on this important topic. I would be honoured to work with you to improve the quality of end-of-life care available for you, for me and for our fellow Canadians.
The Chairman: Thank you very much, Dr. Martin. We will begin with the questions.
Senator Beaudoin: Thank you for your very good presentations.
We agree, of course, that we should have advance directives, and we know that it is not the case in every province of this country. However, I was a bit surprised to hear Professor Bernhardt say that, although his mother, if I understood correctly, had an advance directive will, they tried to resuscitate her, and did so for one hour.
Mr. Bernhardt: One hour, yes.
Senator Beaudoin: Surely we should avoid that kind of situation, but what is the best means to achieve that goal, in your opinion? She had an advance directive and it was not very useful. Should it be registered? In my own province, Quebec, if you have a testament or a will it is registered, and we may always find that; but in the other provinces is it the same thing, when they have wills? Should the advance directive be registered? How do you envisage getting rid of that problem?
Mr. Bernhardt: This is something that certainly our committee struggled with. As Ms Chapman has mentioned, we struggled with finding some way of identifying that the individual has this advance directive.
In the case of my mother, she was living in a seniors' residence, and she died just outside the nurse's station where the advance directive was housed. But there are two things involved here. First, the individuals who were there in the evening were not aware of the directive's being there, and, second, there is the problem that once an ambulance is called, there is a requirement to do what can be done to save the life of the individual.
Certainly, this tends to be somewhat of a contradiction as far as these two pieces of legislation are concerned.
[Translation]
Senator Beaudoin: The Senate is an important legislative chamber and our role is to improve legislation. Dr. Martin, you are asking us to pass legislation concerning advance directives. Death is an inevitable fact of life and it is better that we be proactive on this front.
Refusing treatment and the withdrawal of instruments in the final stages of a person's life are largely matters that should be dealt with in provincial and, obviously, in federal legislation. What kind of federal legislation would you like to see in place?
[English]
Mr. Martin: That is a good question. It highlights the key issue that advance directives will not solve the problem and avoid situations as were described here.
Senator Beaudoin: They are helpful, but they do not solve the problem entirely.
Mr. Martin: In the kinds of situations we are discussing here, the issue was that the focus was on the form and the form was not useful. If the form is in a drawer somewhere or, worse, locked in a security deposit box somewhere, it is of no help to anyone. The key message here is that advance directives do not speak to health care professionals; advance directives speak to substitute decision-makers. In the case described by Professor Bernhardt, the substitute decision-maker becomes, in a de facto way, the nurse or whoever called the ambulance. In the process of communication that prepares substitute decision-makers, whoever takes on that role must be prepared and must know what the person's wishes are in the event of the kind of emergency described. If they are not part of that communication process, a form will not help them.
[Translation]
Senator Beaudoin: A legal document is a document intended for the public's eyes. When a person's draws up a will, that person's wishes must be respected. If you state in your will: "The following directives are to be followed in the event I become seriously ill or mentally incapacitated", then your final wishes must be respected. I think the Mandate in Case of Inability, or power of attorney in case of incapacity, is directed to everyone. The proof is that it is supported by provincial legislation.
[English]
The same thing happens with respect to withholding an instrument or refusing treatment. It is addressed to everyone, and that is why, in my opinion, we should enshrine it in a statute so that everyone will be bound by the law. You can say, "Well, it is not addressed to the professionals," but the law is binding for everyone.
Mr. Martin: I understand your point, and I think you are trying to achieve a noble end. However, there are two problems with making an advance directive mandatory. One is that it is not always there. In this case, it was in a drawer somewhere. It may be at home. It may be in your purse.
Senator Beaudoin: That is not useful.
Mr. Martin: It is not useful if it is not present, and a piece of paper is not necessarily present. Second, it is not always clear. It is too often vague, too often unspecific, too often difficult to interpret. Some people may write on their advance directives, "No heroic measures." What does that mean? People in the midst of a crisis must interpret that, and it becomes impossible. Because of the problem of visibility and also because of the problem of clarity, advance directives are a useful tool, but they will not solve this problem. The only way this problem can be solved is to have decision-makers on the spot who are prepared in an emergency situation, as described. If it cannot be a family member or a loved one, and they cannot be there 24 hours a day, whoever is there must be prepared and must be included in the circle of communication.
Ms Chapman: You were pointing out the issue we were addressing: Having something on the person at all times, whether it is a bracelet with information on it, a card with information on it, or a place where that information can be retrieved.
In the 1996 legislation, the Consent to Treatment Act in Ontario, the advance directive can be in many forms. It can be a form, as Dr. Martin mentioned, but it can also be oral. It can be changed at any time, so that the last information you gave your daughter supersedes what you gave your son six months previously. Therefore, there is this difficulty with the advance directive not being in a form, such as a will, that can be made a legal entity. If you have a substitute decision-maker, though, I understand that you do have a legal document that defines that person.
[Translation]
Senator Pépin: I understand Senator Beaudoin's legal approach to this matter, but when feelings are involved, I prefer to stay away from legal considerations, because it is quite difficult to bring legalities into this. However, on a preventive level, there are certain things that can be done.
In seniors' residences, different colours are used on charts to indicate whether a patient has diabetes, a heart problem and so forth. Nursing staff should be trained to ask seniors what their preferences are as soon as they are admitted to care.
Steps should also be taken to sensitize staff to the wishes of seniors. I think the idea of a bracelet is a good one because on seeing the bracelet, emergency care workers would immediately know what the patient's wishes were, even if that patient had never openly expressed them.
The education and training process could involve a push to encourage people to wear a bracelet like this or to carry a card. Whether in a hospital setting or seniors residence, the nursing staff should always be aware of a person's last wishes or of the location of the advance directives. Are you recommending something similar to this?
[English]
Ms Chapman: It is important to have those instructions known ahead of time. In talking to a member of the Ontario Ministry of Health in long term care yesterday, they are not stipulating that one must have an advance directive before going into an institution. Therefore, it becomes facultatif -- you can have it or not. It is very difficult to legislate that one must have an advance directive. The answer may be that there should be a public education program advising that it would be in your interest to have it.
Senator Pépin: In your presentation, you state:
Competency is defined as the ability to understand information and to appreciate the consequences of treatment. Recognition is given to competency in some areas and not in others;
Which areas are not included?
Ms Chapman: That is straight out of the Health Care Consent Act.
Senator Pépin: Could you give me an example of an area which is not included?
Ms Chapman: If someone is very seriously ill, he or she could be competent in the sense of being a capable individual, but not really capable, at that time, of being able to make decisions. Thus, someone would need to make decisions on behalf of that person. That would be my understanding of the situation.
Senator Corbin: In your opinion, is there a Canadian policy regarding care at the end of life? I would refer to your first statement.
Mr. Martin: The policy regarding end-of-life care in this country is evolving in the same way that it is evolving in many other countries. That is, it is evolving, one narrow piece at a time.
Senator Corbin: Jurisdiction by jurisdiction?
Mr. Martin: Issue by issue. Palliative care, decisions regarding life-sustaining treatments, pain and symptom control, euthanasia and assisted suicide, advance directives, are all pieces. They are all evolving at their own rates and own time, according to front pages of the newspapers and particular issues upon which the legislatures focus. It is the same in the U.S. and in Europe.
The problem is that individual pieces of end-of-life care are evolving in different directions at different rates. There is no coherent framework to draw them together.
Senator Corbin: It is a piecemeal approach.
Mr. Martin: Yes. You probably recognize that many of my remarks are similar to those made by Dr. Singer yesterday. In this country, we need a national strategy for improving end-of-life care -- a holistic approach, a unified framework that incorporates all these pieces into an identifiable goal of improving end-of-life care for the 220,000 people who die each year in this country. That does not exist currently.
Senator Corbin: I will move on to another part of your statement. You comment on page 2 of your presentation that AD forms are difficult to interpret. Where does the problem of interpretation lie? Is it with the professionals in medicine? Is it a language issue? What specifically is the major challenge there?
Mr. Martin: That is an excellent question, and one that I think could evoke multiple answers. Let me give you my opinion on it.
An institution, such as a hospital or a health care facility, embodies certain institutional values. An individual embodies values. The advance directive form is supposed to translate an individual's values into the language of the institutional values. It cannot.
I can bring before you a 50-page advance directive, with details that are minutiae, to say the least. You would not be able to interpret it. It is that much more difficult when the information is on a bracelet, which has very little room for explaining your values and why you want what you want.
The simple fact is that a tool such as a piece of paper or some other medium may not be sufficient. I have seen a person who had a tattoo on their chest with the picture of those resuscitation paddles and a big line through it. That is an advance directive. What does it mean? It is the same whether you have a bracelet, a form, or whether you can say words like "no heroic treatment" or "no life-sustaining treatment".
What does that mean, and in what circumstances does it apply? The key issue is communication. It involves a discussion of values with those involved. There must be discussion of what is important and why it is important. That cannot be communicated through a simple tool.
Senator Corbin: Thank you very much for clarifying that.
I have one final point to raise for this round. It concerns all three of you, if I may say. The council takes objection, or worries...
[Translation]
The Council on Aging is concerned about provisions in the legislation which allow health care professionals to take over treatment of an individual in "emergency" situations.
[English]
Dr. Martin also referred to substitute decision makers in a crisis. In such situations, health professionals can, and indeed do, go in opposite directions to the express wishes of the patient. The council suggests that we should design a mechanism to ensure that the explicit will of the person would be respected in such urgent or crisis situations.
I wonder why this was introduced in the Ontario law in the first place. Would it not be, first and foremost, to protect health care professionals -- to reduce their liability, or are there other considerations?
Ms Chapman: Certain sections in the Health Care Consent Act provide that the health care professionals are not deemed liable for taking over. However, you are right in saying that it can be seen as a liability issue.
For our point of view, there is one very glaring problem area. It involves ambulance workers. If a person is being transferred from one institution to another, having had perhaps treatment at one place and is going back to another, or being transferred to a palliative care hospice from an acute care place, and if the person has a cardiac arrest during that time, the person must be resuscitated even if there is a Do Not Resuscitate order. It is that kind of issue that we find very difficult.
In emergency situations where it seems black and white to the individual, the person who has power of attorney for the person is not able to speak. However, we also realize the complexities of what happens in the emergency situation. The Ontario legislation does allow the health care professional to assess and determine whether in fact some treatment is necessary. We need to keep the person with the power of attorney apprised all along the way so that he or she knows when it is time to step in and say "yes" or "no" to certain treatment.
In our discussions with our group, we found that the emergency issues are complex. They are not simple issues. We, as individuals dealing with the health care professionals, need to be educated and we need support and help in making those decisions.
Mr. Martin: I might just take few seconds to try to put this very important issue into context. In all of Canada, in every province, before an individual treatment can be applied, informed consent must be given by the individual. That applies across the board. If an individual is incapable of giving consent, then a substitute decision maker must give consent before treatment can be started. We are talking here about an exception to that general, broad, countrywide law that applies to every single treatment. That exception is when there is an emergency situation and consent cannot be achieved. A health care professional is then mandated to do what is in the best interests of that patient, according to their standards and practice.
This particular problem, although important, arises less than 1 per cent of the time. Let us keep that in focus here. The Ambulance Act does not concord with the rest of the health care consent acts, and that is an important problem. The issue is consent. Consent is mandatory except in certain circumstances of emergency when consent cannot be achieved.
The Chairman: Dr. Martin, while I agree with 99 per cent of what you have said, I disagree with 1 per cent. Of the nine of us sitting around this table, two of us have been in situations where our mothers, who had "Do Not Resuscitate" orders on their medical charts, were given treatment despite their clear statement to the contrary. In my own view, it is an abusive use of power on the part of the medical professionals, whether they are ambulance workers or physicians. In my case, it was done by a physician despite the "DNR" on her chart. Unfortunately, ambulance attendants are faced with a more difficult issue because they have to conform to their rules which compel them to do this.
My disagreement with you comes from your statement that advance directive forms are neither necessary nor sufficient. I would agree with you totally that they are not sufficient because of your whole thesis, which is extremely supportive, that it cannot take place in isolation and that you need a whole care plan involving all of the people. Surely you must believe, as I do, that the advance directive is frequently the means by which this care plan is developed.
Mr. Martin: I do not think we are in so much discord. The example highlighted by Professor Bernhardt's evidence is that the advance directive did not work. It was there. She filled it out. It said, "Do not resuscitate". It was in a drawer somewhere. The nurse called the ambulance, and they resuscitated. It did not work. It is not always present, and when it is present it is not always clear. You need human beings to interpret the general guidance provided by directives. In that particular case, if trusted loved ones are not present, then whoever is present must be part of that, as you term it, care plan. Apparently, this nurse was not.
The Chairman: Surely that is a breakdown in the communication system.
Mr. Martin: Absolutely.
The Chairman: The care home, the seniors' home, the hospital, whatever, must have an adequate communication policy. That means that when nurses go on the seven o'clock shift, they sit down and assess the plans for the care of each individual patient. Surely that should be part of the information package. Should it not also apply to people who live in a senior citizens' home or, indeed, to people who live in their own homes?
Without the advance directive, which you state is not necessary, I would suggest to you that the discussions that are required will not happen.
Mr. Martin: I have talked to many patients in the conduct of research who do have those discussions without the completion of a form. Forms can be very useful. They can stimulate discussion. They can provide structure and guidance to discussion. In fact, the exercise of completing a form is a useful intellectual exercise in thinking through the issues and discussing them. They are very useful. However, when substitute decision makers are prepared, the forms are not necessary. They can be prepared through communication. Moreover, when the forms are completed, they are not always helpful. They are insufficient.
Mr. Bernhardt: Of a group of seniors, 30 per cent or so do not have loved ones consistenly involved in the picture. In those particular situations, some form of advance directive certainly sets the stage for some consistency. In the situation where the family is not there and we have a revolving group of individuals associated with that senior, there is certainly a need for something to provide consistency that would not be there otherwise.
The Chairman: We heard one anecdotal report today, but I certainly know of others in which there is some confusion between the concept of power of attorney and advance directive. Would you like to comment on that? My 87-year-old father-in-law suffered from metastasic cancer. We did not have his power of attorney. We had his advance directive or living will. We knew what it was he wanted with respect to that. Frankly, there was no need for us to have the power of attorney. My experience was that people thought the two things were the same.
Mr. Bernhardt: In Ontario, certainly since this new legislation which has been in force for almost five years now, the situation has not become clear to most individuals. I find that very few individuals understand this division as far as the power of attorney is concerned and what is involved in that.
Ms Chapman: Under the legislation, if a person has not been named as a substitute decision maker, there is a list of people by a hierarchy who can speak for the person who is incapable of speaking for himself. I can give power of attorney to my daughter, but if I want it to have the force of a legal document, I must consult a lawyer and do it in a proper legal fashion.
Mr. Martin: This speaks precisely to Senator Corbin's question: Do we have a strategy for end-of-life care in Canada? We have a piecemeal approach. These things are called different things in different statutes. What can be more confusing? We have advance directives, living wills, powers of attorney for personal care, powers of attorney for health care, and so on. Advance directives have two parts -- the "who" part and the "what" part -- and the best way I know to confused the public is to call them by different names in different legislation. This highlights the problem raised by Senator Corbin -- that we do not have a unified approach to issues in end-of-life care in this country.
[Translation]
Senator Pépin: Under what circumstances might a decision be made to resuscitate a person despite the existence of an advance DNR order?
[English]
Mr. Martin: People's wishes regarding what they want and what they do not want vary according to the state of their health, that is, it depends on what is wrong with them and how they feel. When they have problems that are reversible, they are more likely to want intervention. If they have problems that are not reversible, they are much less likely to want intervention. Therefore, a Do Not Resuscitate order must be linked to the state of health of the individual. That creates a second level of complexity. That, then, must be linked to the overall wishes of the individual regarding the quality of his or her life in general. That creates a third level of complexity.
I could go on, but I think you can see how quickly it becomes difficult to interpret what people mean when they say, for example, "If I am dying, let me die." If you stop breathing, are you dying? If you stop breathing and drugs can be administered or machinery can be used to help you breath again, are you dying? The situation is very confusing.
Senator Corbin: I will make a biographical revelation. I do not have an advance directive, and neither does my wife or my children, but we discuss this issue very comfortably quite often. In fact, it happened again last evening. That is fine as far as it goes. By that I mean I travel in my political work as a senator and my family may be far away. I may fall into the hands of unknown professionals in a strange hospital, and they do not know what my end-of-life or cultural or religious preferences are and, if I am comatose, they ethically must do what is best for me, according to accepted professional standards.
I am prepared to accept that. On the other hand, if I happen to go to hospital with my family present, I know they will do the right thing. In the end, it really does not matter. In an hour I will be dead or in two days I will be dead. They are left with many problems.
What we are discussing amongst ourselves is really a matter of easing the passage, making everyone comfortable, and by all means avoiding developing a sense of guilt. To me, there is a grave danger that the survivors may awake the next morning with a sense of guilt that they could have done more, or that the professionals could have done more. I do not wish to have too much legalese attached to end-of-life issues. This would create great opportunities to enrich already rich lawyers, and no matter what the law says in terms of liability in Ontario, for example, an enterprising lawyer can take anything to court and wreak havoc with the legal system. In the best of worlds, I like your soft approach, Dr. Martin. I categorize it as "soft" because it makes sense.
I do not know if I interpreted Senator Beaudoin's comments correctly, but Senator Beaudoin is a jurist. To his way of thinking, everything must be clear-cut in the law, and you must take into account all possible situations. To me, that is not what life is about. Life is a continuum, and I accept what life and death offer me.
Perhaps I went too far in telling you how I feel but, for God sake, spare us the legalese.
Senator Beaudoin: I must defend myself.
I think the "law of health", if I may refer to it as that, is just beginning. People are afraid of talking about death, sickness, et cetera. I am the first to admit that. I do not say that everything should be legalized. That is going much too far. I have prepared a will because, in my opinion, it is necessary.
However, I think it will become increasingly important to have legislation, in a general sense. Special arrangements can be made way of a will, and although you may write a directive, the question of interpretation is a major consideration. Even the most brilliant people sometimes do not express themselves clearly. This is part of life. We may try to remedy that, but it will always be there.
Therefore, I think we should have general legislation, but we should still allow everyone the option of preparing his or her own directive. I believe in that. I also believe that being able to designate the power of attorney is very useful. I do not have that, but I probably should.
The preparation of directives should be available but, in their absence and having regard to human nature, I believe it is the duty of Parliament to legislate generally, in the event that people do nothing. If people do not do anything, we will be stuck with the problem. It is a compromise.
There should be general legislation for practitioners, that is, doctors and nurses, but we must leave some decisions to the individual. The Charter of Rights and Freedoms is a very important statute. We may have wars, but we have charters to protect rights and freedoms.
We know we need some general principles to guide us and, within those principles, every individual would be free to do what he or she wants.
Civilization started with the enactment of laws, and we will always have laws. The law of health is just starting. I do not say that we must put everything in writing because that would be foolish, but we should put in writing the general principles which shall apply to everyone.
The Chairman: There is very little disagreement between the two senators. Senator Beaudoin is saying that everyone should have the right to make an advance directive if they want, and Senator Corbin is saying no one should be compelled. We are unified on that.
Ms Chapman: I would like to emphasize that the people sitting around the table at the Council on Ageing -- people from all different walks of life -- were very firm in their support for the need for an advance directive. They wanted to be part of the decision making that took place once they came to that interface and beyond with the medical profession.
You do your planning and thinking with family. That is important and, in fact, wonderful. However, that must carry over when dealing with the health care professionals.
It is absolutely essential that the thinking is done ahead, but then it must carry over into the other realm so that all those end-of-life issues can be carried out as determined by the person who must go through the whole process.
Mr. Martin: If the focus of general legislation setting out general principles is on advance care planning as a process of communication, then all these other things will follow quite naturally and in a common-sense manner. If you focus on the form, you will miss out on the social aspects of communication.
Senator Beaudoin: We are sensitive to communication.
The Chairman: I wish to put a question to Professor Bernhardt. Senator Corbin raised a very interesting point of view, and one in which I think he is absolutely correct. We die and it is the bereaved ones who are left with some sense of guilt that not everything was done that should have been done.
I, personally, have an enormous sense of guilt about the circumstances surrounding my mother's illness. She had had a cardiac arrest before, and knew she was likely to have others, so her Do Not Resuscitate order was very clear. If she had a cardiac arrest, she did not want to be resuscitated. She did not want to have the paddles applied. My guilt arises from the fact that they were applied. I have always felt that I let her down because, as her substitute decision maker, they did something without her permission, and with which I did not agree.
Professor Bernhardt, you have been in exactly the same situation. What was your reaction when you learned that they had tried to resuscitate your mother for an hour?
Mr. Bernhardt: I was not quite in the same situation you were in, and I did not feel the same sort of guilt. I was in Ottawa and she was in Toronto, thus I was not there. The resuscitation did not work, so there was not the same sort of situation that you faced. My bad feelings came when I went to Toronto to make the funeral arrangements and talked with mother's friends in the residence where she was living who had spent an hour there watching this. For them, this was a horrendous experience.
There was no reason for me to feel guilt, and I did not in that situation. The guilt was more in the fact that I was in Ottawa and she was in Toronto through this last 10 years of her life. It is very difficult to be a caregiver from a distance. That is where my guilt came in.
The Chairman: Thank you very much. It has been extremely useful to have had this discussion with you today. I can assure you that the views of all of you will form a significant part of our recommendations.
Senators, our next meeting is Tuesday, March 14, 2000. We have no meetings scheduled for next week because the Senate will not be sitting.
The committee adjourned.