Physician-Assisted Dying Committee on Feb. 1st, 2016

[Dr. Francine Lemire, Executive Director and Chief Executive Officer, College of Family Physicians of Canada]

Good afternoon. As mentioned,

my name is Francine Lemire. I am the Executive Director and Chief Executive Officer of the College of Family Physicians of Canada. I am a family physician myself. I want to thank you for inviting me. It is a privilege to be presenting to you today.

That is as much French I'm going to use in the presentation, but I will be pleased to entertain questions in both official languages. I'm glad that I'm here now, because judging by the lunch you're having, you may be quite sleepy this afternoon. You need to be thinking about that.

[Voices]

Oh, oh!

[Dr. Francine Lemire]

I'm also glad that I was here for the first part of this discussion, which has given me the flavour of the kinds of questions we may be discussing.

The College of Family Physicians of Canada represents 35,000 members across Canada. We are the professional organization that is responsible for establishing the standards of training and certification for family physicians. We also accredit continuing professional development programs, enabling family physicians to maintain certification in family medicine and meet licensing requirements regarding their commitment to lifelong learning.

We accredit the postgraduate family medicine residency training in each of Canada's 17 medical schools. We provide quality service, support family medicine teaching and research, and advocate for family physicians and the patients they serve.

As the voice of family medicine as an academic discipline, we are expected by physicians to reflect on and express an informed approach, expectations, needs, and concerns on important issues such as physician-assisted dying.

After listening to the first part of the presentations, I could say that my remarks could probably be summarized by saying that we believe it is important that this discussion be part of the context of a patient-physician relationship and not be purely a process-focused exercise. I'm not saying that process is not important, but I would say that the context of the relationship and how that fits is probably the most important element of this discussion.

In 2013 the college established a task force on end-of-life care. It examined ethical issues on which family doctors might require further education and guidance. The task force recently released a guide that addresses key ethical questions family physicians may have as a result of the recent changes in Canadian law affecting physician-assisted dying. This guide has been shared with the committee. I'm assuming that you can refer to it in your deliberations.

In these difficult situations, as in any clinical decision-making process, family doctors are responsible for ensuring that our patients have all the relevant information to make the most informed and consensual decision regarding their care. A patient's medical diagnosis, their prognosis, what their life expectancy is, the potential risks and consequences associated with treatment or the withholding thereof, as well as the procedure that would result in their death, are just a few examples of information that a patient will need. Because it is a component of comprehensive care that our members offer, family doctors will ensure support is available for the patient's family or other caregivers. The family physician will educate the patient about all other therapeutic options and their consequences and will stress that a patient is able to rescind a request at any time and in any manner.

As family physicians, we must also offer the patient time to discuss complex concerns about their medical condition. This process includes determining with the patient and their loved ones what values, hopes, and fears lie behind the request. These might not always be the same as the patient's stated reasons.

For this process to be meaningful, the physician needs to know his or her patient well and needs to engage in attentive non-judgmental listening. Family physicians know that they should not take over the decision-making of competent patients, nor should they project or impose their own values on their patients. They must always avoid allowing their own perceptions to prejudge the quality of their patients' lives.

Family doctors need to be attentive to signs of not only biological or psychological distress but also of existential suffering. These often arise when individuals face declining health, diminished function, or the reality of impending death. Because patients might not always be aware of or be able to articulate their thoughts regarding these struggles, physicians have to be adept at discussing feelings and interpreting behaviours, and they have to be able to draw on the expertise of others to do so. The physician's attentive and empathetic listening, availability to discuss issues of concern, offer of appropriate supports, and expression of commitment to continuing care throughout the patient's illness are in themselves important therapeutic responses for patients and their loved ones.

We recognize that no other group of practitioners in the Canadian health care system is better placed and better equipped to take on this important and difficult role with Canadians than family physicians working in communities, large and small, across our country. The college intends to leverage the knowledge of its members and experts in the area to develop appropriate education resources and ensure that appropriate guidance is available to our members.

A physician who refuses to fulfill a patient's request for physician-assisted death for reasons of conscience still holds some responsibilities to the patient. As the primary providers of care, family doctors can assist their patients in finding a willing physician. This can be done through directly referring the patient to a willing physician, providing their patient with advice on how to access a separate referral service, or notifying the medical administrator at an institution, who would arrange for another referral.

A central information system for patients would support this process and help a great deal to avoid feelings of abandonment and confusion. It would also improve the standardization of information available across Canada on this important issue. The objecting family physicians will provide continuity of care and transfer the patient's medical record promptly and effectively if requested. Above all, the CFPC opposes any action that would abandon a patient without any options or direction.

The college believes that Canadians should have access to quality palliative care in their communities. Permitting physician-assisted dying should not be considered a substitute for efforts to improve comprehensive medical, mental health, and palliative care. Rather, these efforts should be intensified.

Individual physicians and the medical profession should recognize and act to support patients who have serious illnesses or disabilities and those who are dying. Physicians need to consider the patient's assessment of the overall balance of benefits and burdens of life-sustaining interventions for himself or herself. They also need to be able to maintain continuity of care when referring patients to the appropriate specialized care, provide coordination of care among different parts of the health care system, and ensure that patients are cared for by physicians and a team of health care providers whom they trust and who know them well.

As with any medical changes that arise in the legal context, ethical issues will need to be deliberated within medical colleges and by individual physicians. We maintain that family physicians should, above all, remain committed to their relationships with their patients and their patients' loved ones during this last chapter of life. Recognizing that those who have serious illnesses or disabilities and those who are dying are among their most vulnerable patients, family doctors are expected to be health advocates on behalf of such patients.

We believe that in order to be able to provide consistent and compassionate care for patients in this exceptional context, Canadian family physicians need to have a simple and achievable expectation of the legal and licensing entities that touch this aspect of their practice. They need clarity and consistency in the standards and requirements that govern what they can and cannot do and how their discussions and decisions with patients need to be documented.

We recognize the complexity of the issue and the concerns it will raise among some of our members. Poll after poll, however, confirms that this is a service that the people of Canada find necessary, and we will work with the physicians willing to provide this service to deliver it in a compassionate, ethical, and professional manner.

I want to thank you once again for the opportunity to present a family medicine perspective on this issue. We look forward to the legislative framework that will emerge and we are ready to continue the collaboration and discussion in this important area.

Thank you.

[The Joint Chair (Mr. Robert Oliphant), Liberal, Rob Oliphant]

Thank you, Dr. Lemire.

We'll continue with the Alzheimer Society. Ms. Lowi-Young will begin.

[Mimi Lowi-Young, Chief Executive Officer, Alzheimer Society of Canada]

Thank you very much.

I would like to introduce Debbie Benczkowski, who is with me. She's the chief operating officer of the Alzheimer Society of Canada.

Good afternoon, joint chairs Senator Ogilvie and member of Parliament Oliphant, and to all the members of this special joint committee. Thank you for the invitation to appear this afternoon before this committee as it prepares to make recommendations on the framework of a federal response to physician-assisted dying.

Let me begin by saying that the Alzheimer Society acknowledges the necessity of the pending legalization of physician-assisted dying. The legislation that you will develop will shape end-of-life rights for many years to come.

The significant outcome of the Supreme Court decision of February 6, 2015, is that physician-assisted dying will no longer be considered murder under the Criminal Code of Canada. For people living with dementia and those who care for them, the related issues are both practical and ethical in nature.

This is a complex issue. The Alzheimer Society believes that Canadians living with dementia, and their families, should have the right to access palliative care and services and to have realistic choices on where and how they wish to live and die.

To begin, consent-to-treatment legislation is solely within the jurisdiction of provincial legislatures. In Ontario, for example, the Health Care Consent Act has been in place since 1996. It provides safeguards for people who are capable, or incapable, with respect to decisions for treatment.

Because of the progressive and ultimately fatal nature of Alzheimer's disease and other forms of dementia, this disease has become a special focus in the debate about physician-assisted dying. Alzheimer's is a progressive degenerative disorder that affects the brain. More than 747,000 people in Canada live with Alzheimer's disease and other forms of dementia. That number is expected to double to 1.4 million in the next 15 years. This is a growing public health concern. Recently the WHO, the World Health Organization, stated that dementia must be treated as a global health priority.

Given the nature of the disease, a person's ability to communicate needs and preferences diminishes over time. For those who care for them, it is difficult or impossible to know what the person with dementia comes to value over time, especially if those values are at odds with previously expressed desires.

Progression over time will vary from person to person. No matter the stage of the disease, people with dementia remain unique. They are whole people. Their rights and their needs must be recognized and respected.

Living with dementia brings enormous challenges, making end-of-life issues complex and personal. People with dementia deserve access to the highest possible quality of support and care throughout their lives. This reality contributes to concerns that a person with dementia will be vulnerable at the end of life, and at risk for untoward pain and treatment.

A diagnosis of dementia does not render someone immediately incapable, but anyone who has received the diagnosis will need considerable information and support in order to make an advance care directive. This is why end-of-life planning and care are so critical. The Alzheimer Society promotes early diagnosis so that people can make their wishes known and plan with their families for their future care.

With accessible, high-quality palliative care, Canadians with dementia may feel more confident about facing the end of their lives. Therefore, I'd like to stress three points.

First, people are not able to predict the exact nature of the progression of their own disease.

Second, people's wishes may change significantly over the course of the disease, which can last up to 10 years and more.

Third, and crucially, at the end of their lives, people with dementia would not be considered competent under the law to make a decision to end their lives.

In light of these points and with respect to physician-assisted dying specifically, the Alzheimer Society agrees with the view that doctor-assisted dying should only be considered under conditions when the person is deemed competent at a given point in time. If the person is not deemed competent, then the risks of abuse are simply too great.

It's conceivable that some people with early dementia, perceiving difficulty with family or friends, may make an early decision to request doctor-assisted death. This might take the form of a formal advance care directive provided to the next of kin. However, given the high degree of variation in the evolution of each person's potential path with dementia and also the possibility that their values and beliefs may change over time, we recommend that advance care directives for physician-assisted death should not have standing when the person lacks competence at the time of the potential health care provider intervention. The risks are just too great.

Today only 16% to 30% of Canadians who die have access to or receive specialist hospice palliative care and end-of-life care services, and this access depends on where they live in Canada.

To be clear, the Alzheimer Society believes that Canadians living with dementia and their families should have the right to access palliative care and hospice service and to have choices on where and how they wish to spend the latter parts of their lives if they live with dementia.

For these reasons, the Alzheimer Society advocates for a national dementia strategy, a pan-Canadian, collaborative partnership of experts to support quality care nationwide to provide governments, NGOs, and individual Canadians with the evidence-based information and tools they need to make informed decisions about living with dementia. A national dementia strategy will ensure that all Canadians with dementia, regardless of where they live, will have access to the same level of quality of care and services. To achieve this strategy, the Alzheimer Society has proposed the creation of the Canadian Alzheimer's disease and dementia partnership. The Alzheimer Society of Canada is looking to the federal government to fund this partnership.

Life does not end when Alzheimer's begins. The right to wellness must be protected, and stigma must be mitigated. The stigma associated with this disease can be as devastating as the changes that will occur in someone's life. Often it prevents people from even seeking a diagnosis and is a barrier for health care providers who must make it.

The Alzheimer Society launched the #StillHere campaign at the beginning of January for Alzheimer Awareness Month. The society is challenging Canadians today to recognize the people who are living with dementia in their communities and to think about ways to help them live better lives.

Let me conclude by reiterating the views of the Alzheimer Society on the topic at hand, physician-assisted dying.

Regardless of where legislation leads, the Alzheimer Society emphasizes that improving access to quality palliative care for all Canadians and their families facing life-threatening diseases, including dementia, must remain a public health priority. Federal legislation should enable the provinces to determine within each jurisdiction how provisions for advance care planning by people with dementia will be accommodated.

A national dementia strategy will help realize this goal for people living with dementia. It is an essential step in managing the dementia crisis for Canadians today and for changes that the journey might bring to Canadians' views and practices in the future related to individual autonomy and empowerment at the end of life.

Thank you very much.

[The Joint Chair (Mr. Robert Oliphant), Liberal, Rob Oliphant]

Mr. Lemieux.

[Denis Lemieux, Liberal, Chicoutimi—Le Fjord, QC]

Thank you, Mr. Chair.

My question is for Ms. Lowi-Young, from the Alzheimer Society of Canada.

In your presentation, you talked a lot about advance consent.

When someone who is still competent under the law wants to write an advance directive, how can we refuse them a physician-assisted death?

[Mimi Lowi-Young]

I think we're saying that this issue is a very complex one. It's important to express one's values and beliefs to family members at a time when one can. I think we're saying that physician-assisted dying is a very difficult issue in terms of context and the timing of such consent being given.

[Denis Lemieux, Liberal, Chicoutimi—Le Fjord, QC]

I have no further questions, Mr. Chair.

[The Joint Chair (Mr. Robert Oliphant), Liberal, Rob Oliphant]

Would you like to give the floor to one of your colleagues?

Go ahead, Madame Shanahan.

[Brenda Shanahan, Liberal, Châteauguay—Lacolle, QC]

Thank you very much. My question is for Madame Lemire.

You spoke very eloquently about the role of the family physician in assisting patients with end-of-life options. We heard testimony earlier from Mr. Jay Cameron from the justice centre, who said that these decisions should be referred to a superior court judge.

What is your reaction?

[Dr. Francine Lemire]

It is one of concern, in terms of where a request of this nature would fit in the context of the continuum of care that exists in a family physician-patient relationship. We would have concerns with that. We would prefer to see this as a medical act that is part of tons of other medical acts that physicians are involved in and are considering with their patients.

Obviously, there would need to be the appropriate consultations, documentation, and all of that, but we would view this with concern.

[Brenda Shanahan, Liberal, Châteauguay—Lacolle, QC]

I have another question.

We are currently going through this in Quebec. Can you tell us a bit about the experience of Quebec family physicians in this area?

[Dr. Francine Lemire]

I cannot make specific comments because I have not spoken to any family physicians who have been involved in the process. However, we do know that, since December, assisted suicide has been used in some cases.

Over the next few months, we intend to carry out a somewhat more appropriate consultation through the Quebec College of Family Physicians to better understand how things are going.

Generally speaking, we are impressed by the process currently in place in Quebec. Through the Collège des médecins du Québec—Quebec college of physicians—physicians will have to be prepared to incorporate the procedure into their scope of practice.

[Brenda Shanahan, Liberal, Châteauguay—Lacolle, QC]

I would like to ask one last question. Is palliative care part of that range of available services?

[Dr. Francine Lemire]

There is no doubt that palliative care is very important and that what is currently being done in Canada in that area must be improved. However, I believe that Canadians have been very clear. Although quality palliative care is provided in Canada, Canadians want a separate right to have access to that service, where assisted suicide would be considered.

We have to remember that most palliative care in Canada is currently being provided by family physicians, that they are the ones incorporating that care into a complete and comprehensive scope of practice and the ones who have additional qualifications in palliative care. Those physicians are telling us that they do not want to see assisted suicide as the end of what is happening in palliative care. They really want to be able to keep things separate.

[The Joint Chair (Mr. Robert Oliphant), Liberal, Rob Oliphant]

Merci.

Mr. Albrecht.

[Harold Albrecht, Conservative, Kitchener—Conestoga, ON]

Thank you, Mr. Chair.

Thank you to all of our witnesses for being here today.

Many times we hear the criticism of the medical profession that they are too focused on the medicalization of dying, and I found your presentation to be refreshingly different from that. You're addressing what I believe are many of the ethical and moral issues that underlie this big question we are facing as parliamentarians, which is what does it mean to be human, and what gives human life meaning?

I was especially pleased to see these kinds of thoughts coming from those who are charged with the responsibility of licensing our physicians and surgeons. It is really encouraging for me.

I want to read into the record some of the statements you made in your paper, because I think it is crucial for all Canadians to hear this, and, unfortunately, they won't all be able to read your paper.

The term dignity can have different meanings and is open to interpretation.....

There is a general agreement that dignity is intrinsic in all human beings because all have equal worth and belong to the human community. Dignity in this sense cannot be diminished or lost by such changes as disfigurement, illness, or decline in capacities.

There is another sense of dignity that is related to the flourishing or well-being that patients experience in their lives. Dignity as associated with flourishing and well-being can be subject to variation with illness and disability for some individuals, particularly for those who are concerned with their loss of control or independence. These concerns in many patients can be mitigated and addressed by effective care, so that their dignity in this sense can be preserved or even enhanced. In other patients, their adjustment to and acceptance of the limitations imposed by illness, disability, and death can result in overall well-being and the patient and can provide a sense of meaning and inspire their loved ones and others in the midst of suffering.

A third sense of dignity, attributed dignity, is connected with how patients perceive themselves or how they perceive others' regard for them. Negative self-perception and concerns about being a burden to others can often lead patients to consider physician-assisted suicide and euthanasia.

In another paragraph, you indicate that one of our challenges is in challenging attitudes and behaviours that regard some patients as non-productive and costly members of society—for instance, referring to the demographic of aging Canadians as the “silver tsunami”. These attitudes and behaviours among care providers can reinforce patients' sense of being a burden to others and their perception that they have a duty to die.

One of the foundational concerns I have, as a member of Parliament charged with the responsibility of making recommendations to the government as to how we craft legislation, is how we can be 100% certain that what today could be a right to die could, through some kind of coercion, moral or otherwise, become the duty to die. How can we be 100% sure? What kind of safeguards can we put into our recommendations to the government that we will do all we can to be sure that does not happen?

[Dr. Francine Lemire]

You expect an answer from a family doctor in a minute or less.

Some of the segments of the paper produced by the college that speak to dignity have also been covered by my colleagues from the Alzheimer Society in terms of the slippery slope that we are on, and yet, at the same time, we need to stand up and be counted and listen to what Canadians have told us.

I don't have magic recommendations other than to suggest that there ought to be clarity around the process and clarity around what is expected of physicians. I've already expressed my concerns around referral to a court. I would suggest that the concept of consultation by two physicians is important. The process of a request that is first expressed but must be expressed verbally within a certain period of time is also important in making sure a rash decision is not being made. During the time between the first request and the second request, including what happens before, really good consideration between the team that is looking after that patient and the patient himself or herself needs to take place to make sure there is good consideration of the options and everything that is described in the paper and of what I've said. However, once that second verbal request is made and a written request follows, we must ensure that not too much time elapses between meeting the request and providing the required care in a caring and compassionate manner.

I think clarity around what is expected of the profession, clarity of the documentation, and safeguards around the process so that there are two requests, including one verbal one, are all important.

[The Joint Chair (Mr. Robert Oliphant), Liberal, Rob Oliphant]

Thank you, Dr. Lemire.

Mr. Rankin.

[Murray Rankin, NDP, Victoria, BC]

Thank you, Chair. I'll be sharing my time, please, with Madame Sansoucy.

I would like to first ask Ms. Lowi-Young of the Alzheimer Society for clarification. I just want to make sure I've grasped the perspective.

I believe your position as an organization is that there should not be advance directives for Alzheimer's patients because the risks are too large. I'm wondering if you were here this morning when we had testimony from the Dying With Dignity people. They mentioned Gillian Bennett, whose blog, deadatnoon.com, talked about her difficult choice in this area when she had advanced dementia. They also made reference to a nurse, Ms. Bentley, who made it clear that she did not want to be in this situation. She had stage seven dementia and was still being spoon-fed, contrary to her wishes and the wishes of her family.

Those are examples, I think, on the other side of this issue. I just want to make crystal clear whether or not your view is that it ought not to be allowed to Ms. Bennett or Ms. Bentley.

[Mimi Lowi-Young]

No, we do believe that the advance directive is appropriate for the substitute decision-maker. I think what we're saying is that with dementia it's very complex, only because the disease happens and progresses over a long period of time, and the context may be different during the various stages of the progression of the disease.

I think I want to clarify that. I mean that there needs to be a substitute decision-maker. That's what we were saying.

[Murray Rankin, NDP, Victoria, BC]

That's very helpful. Thank you. I just wanted to clarify that.

Dr. Lemire, I would like your comments on whether there should be two physicians to confirm the consent or whether just one is sufficient in the family doctor context. Is one likely to be adequate, or would you suggest the need to have two, as other witnesses have sought?

[Dr. Francine Lemire]

We support having two physicians, with the most responsible provider being that first person who can view the request in the larger context as described, and then a second consultation by another physician.

[Murray Rankin, NDP, Victoria, BC]

Should it be a specialist, or is that not material?