Justice Committee on May 3rd, 2016

[The Chair, Liberal, Anthony Housefather]

I hereby convene the meeting.

Thank you for coming to this meeting of the Standing Committee on Justice and Human Rights. It's a great pleasure to have everyone here as we continue our discussions of Bill C-14.

We have four witnesses today, Dr. Georges L'Espérance, President of the Quebec Association for the Right to Die with Dignity, who is accompanied by Dr. Nacia Faure.

We also have with us Sally Guy, who is with the Canadian Association of Social Workers. Thank you very much for being here.

As an individual, we have with us Dr. Theo Boer, who is a professor of ethics and has experience with this in Holland. Welcome, Dr. Boer.

[Prof. Theo Boer, Professor, Ethics, As an Individual]

Thank you.

[The Chair, Liberal, Anthony Housefather]

The way this will work, as I've explained, is that each of you will have eight minutes to speak to the committee. I would very much ask that you speak to the legislation in front of us, not your general views of the subject. We're not trying to replicate the work of the special committee; we want to hear your views on proposed amendments or your thoughts about the legislation before us. I very much appreciate your coming here.

We will begin with Dr. L'Espérance and Dr. Faure

Welcome. You have eight minutes for your presentation.

[Dr. Georges L'Espérance, President, Quebec Association for the Right to Die with Dignity]

Merci beaucoup.

On behalf of Dr. Faure, myself, and the Association québécois pour le droit de mourier dans la dignité, we are very pleased to be here and thank you very much for this opportunity to discuss this very important bill.

My name is Georges L'Espérance. I am a neurosurgeon and president of the Quebec Association for the Right to Die with Dignity.

Like all neurosurgeons, I have treated patients with brain tumours, brain hemorrhages, and major brain trauma during my career. Some of them do very well while others decline slowly, sometimes over many years. These are all human beings with a name and a life.

Other patients are still young, like my younger sister who died a year ago, at the age of 49, of ovarian cancer with brain metastases. She died while in palliative care, in deplorable suffering. This is also typical of a number of other neurological diseases, such as amyotrophic lateral sclerosis and dementia.

With me today is Dr. Nacia Faure, an endocrinologist by training who devoted the final years of her career to providing palliative care with compassion. She is perfectly placed to defend the idea that medical assistance in dying should be part of palliative care for the few people who request it.

We proudly represent the Quebec Association for the Right to Die with Dignity, founded in 2007 by Hélène Bolduc, who has since fought tirelessly for the right of each person to die in dignity and freedom, and in accordance with their values. We will be addressing the purely medical aspects and will leave the legal arguments to others.

The Association understands that Bill C-14 would amend specific provisions of the Criminal Code and is not specifically a bill on medical assistance in dying. As such, Bill C-14 does not have to reiterate the protection of the physician, nurse practitioner or pharmacist who conscientiously objects. These essential considerations on such a sensitive matter must be part of any provincial laws that provide a framework for medical assistance in dying.

Conscientious objection is a well recognized concept, founded in an individual's convictions, but it does not apply to institutions. Further to the Supreme Court's unanimous decision, two specific aspects of Bill C-14 should in our opinion be expanded upon: medical assistance in dying for persons with chronic, debilitating pathologies that are not terminal in the short or medium term, and the provisions on advance medical directives.

Regarding persons with chronic, debilitating pathologies that are not terminal in the short or medium term, the most striking cases and the ones of the greatest concern to the public are patients with neurodegenerative or traumatic pathologies. Informed consent is possible when cognitive abilities are intact. The same applies to patients with chronic, debilitating pathologies, such as respiratory or cardiac insufficiency, and so forth.

The way it stands, any competent person may refuse any test or treatment even if it endangers their life. Multiple supreme court decisions in Canada and the United States have consistently upheld the right of such patients to cease any treatment, even if death is the inevitable, immediate or short-term consequence.

Any adult with an incurable illness or enduring suffering that is intolerable should have the right to medical assistance in dying at the time and in the way they wish instead of having to put themselves through unnecessary suffering just to comply with overly restrictive legislation. This of course includes patients who decide to starve themselves to death, something that can take several weeks.

It would be quite the paradox for the patient to have the right to refuse treatment, with its accompanying suffering and often constant agony, while the caregiver would not have the right to administer a final compassionate act to help the patient. Despite its many benefits, palliative care does not solve everything.

There comes a time when medical options run out and when the patient, for the sake of their dignity, no longer wishes to endure the daily nightmare of their physical existence. It is incumbent on medicine to help the patient assert their dignity if that is their considered and repeated request.

The alternative for these patients—despite the best palliative care—is to kill themselves or to attempt to do so, often under appalling circumstances. It should be up to the patient, the main party concerned, to decide whether to request medical assistance in dying.

This is a very real clinical problem that should be included in subsection 241.2(2) of Bill C-14, as stated in the second recommendation of the report by the Special Joint Committee on Physician-Assisted Dying:

That medical assistance in dying be available to individuals with terminal and non-terminal grievous and irremediable medical conditions that cause enduring suffering that is intolerable to the individual in the circumstances of his or her condition.

As others have pointed out, the time limits set out in Bill C-14 open the door to legal challenges that would be very distressing to patients with chronic pathologies who wish to exercise their rights under the Canadian Charter of Rights and Freedoms.

[Dr. Nacia Faure, Former Endocrinologist and Palliative Care Doctor, Quebec Association for the Right to Die with Dignity]

The second major problem is that of advance medical directives.

The Association wholeheartedly supports the spirit of the seventh recommendation made by the Special Joint Committee on Medical Assistance in Dying, to allow for advance requests for medical assistance in dying for persons having received a diagnosis of a neurodegenerative disease that is reasonably likely to lead to a loss of competence, in order to enable the person or their representative to exercise this option when they wish. The alternative to terminal decline, inevitable in the short or long term, is the possibility but not the obligation to end one's life peacefully, in accordance with one's own beliefs, and not anyone else's, whatever they might be.

The Association therefore requests that subsection 241.2(1) include the following:

That the permission to use advance requests for medical assistance in dying be allowed after a person has been diagnosed with a grievous or irremediable condition that is reasonably likely to cause loss of competence. The same protections would apply for advance requests as for requests for immediate medical assistance.

I would like to say a few words about patients who are not competent, about minors, and about the issues relating to mental health.

As things stand, the Association is completely in favour of maintaining the prohibition pertaining to persons who are not competent and who did not make advance medical assistance requests, and to all persons born with a cognitive deficit or who have lost their cognitive abilities before clearly and explicitly stating their wishes. There must be no room for public confusion between medical assistance in dying and eugenics. As to minors and persons with primary psychiatric pathologies, further consideration is needed, as well as dialogue with countries grappling with the same issues. We could all benefit from joint reflection with several countries.

[Dr. Georges L'Espérance]

Finally, I have one more thought on assisted suicide.

The Association is concerned about section 241.1b) of BillC-14, which in our opinion opens the door to a type of assisted suicide. In our view, it must be very clear that medical assistance in dying is and must remain a strictly medical act, administered by a physician, nurse clinician or pharmacist, according to the legislative provisions of each province.

There are four reasons for this.

First, current medical science makes it possible for persons with serious and grave medical conditions to live very comfortably for a period of time. It is incumbent on medicine to help patients until the end and to respect their independence and dignity when they can endure no more, either physically and psychologically.

Second, the immediate and compassionate presence of a physician or nurse clinician is necessary to address any problem that might arise during the administration of medical assistance in dying.

Third, a very strict framework must be established as regards professional, ethical and moral conduct and responsibility.

Fourth, any confusion must be prevented between medical assistance in dying and an unexpected suicide, which is always a terrible tragedy.

We understand the objective of not making it a crime for someone to help another person choose assisted suicide, whether in Switzerland or elsewhere. Yet the possibility of obtaining medical assistance in dying in Canada should eliminate this alternative, and fairly, regardless of the physical, financial or psychosocial capacities of the person with the terminal condition.

Thank you for your attention.

[The Chair, Liberal, Anthony Housefather]

Thank you very much for your presentation.

[Sally Guy, Social Worker and Policy Analyst, Canadian Association of Social Workers]

Thank you and good morning.

On behalf of the board of the Canadian Association of Social Workers and our provincial and territorial partner organizations, I'd like to thank this committee for choosing to hear the perspective of social work on Bill C-14.

Our organization was founded in 1926. We're the national association voice for the social work profession. We have a dual mandate to promote the profession as well as to advance issues of social justice.

I will get right to the point on Bill C-14. Although social workers will not be administering or providing a substance to cause death, it's reasonable that they would be involved in the lead-up or the consultative process leading to the decision to undergo medical assistance in dying. Social workers may also be among the care providers to whom a client would bring their end of life concerns, and may actually be the first point of contact in this regard.

As key members of interdisciplinary teams, and quite often as the only health, mental health, or helping professional in certain rural, remote, or northern contexts, social workers must be able to provide therapeutic counselling services; support to clients, their families, and even their networks; and referrals to service on the subject of medical assistance in dying. They must be able to do all of that without fear of criminal consequence.

It is very important that clients who are considering medical assistance in dying are able to bring these end of life concerns to their preferred care provider. It's equally important that care providers who are entering into these end of life discussions, or even consultations, can do so without worrying that they are going to be party to an offence.

To this end, CASW is concerned about the lack of clarity around the exemption for persons aiding a practitioner and persons aiding a patient under paragraph 241(b) of the Criminal Code, specifically as this might apply to social workers. Furthermore, Bill C-14 focuses very much on the provision—the actual act of providing or administering the substance to cause death in medical assistance in dying—with little emphasis on the process beforehand, that consultative process, the lead-up.

We're seeking further clarity on paragraph 241(a), specifically as to whether social workers who will be participating in client care leading to a decision to undergo medical assistance in dying could potentially be seen as counselling or abetting a person to die by suicide. Of course we want to avoid that.

To address this, we would recommend that C-14 be amended to clarify the meaning of “counsel”. Mental health providers like social workers provide therapeutic counselling services and engage in therapeutic conversations with their clients all the time. In this sense, “counsel” has a very different meaning from the one that's intended by paragraph 241(a). We think that this could be easily addressed by simply revising the word “counsel” in 241(a) to “persuades or encourages”, so it would read, “persuades or encourages a person to die by suicide”.

On top of that, we would also recommend creating or amending some language to provide an exemption for social workers who would be engaging with clients on the subject of medical assistance in dying, whereas “engage” could be defined as the provision of therapeutic counselling, the referral to information, supports to clients, their families, and even their broader networks, and of course, referrals to service.

This would just ensure that no social worker who engages with a person or a client on the topic of MAID, or medical assistance in dying, whether preceding or following that person's decision to undergo it, would be party to an offence under paragraphs 241(a) and (b), and equally that no social worker who aids a practitioner or patient by engaging with the person on the topic of MAID would be party to an offence.

I hope I kept that brief.

With that being said, I want to thank you again for hearing from social workers and I look forward to any questions that you might have.

[The Chair, Liberal, Anthony Housefather]

Thank you very much. May I just say, that was completely on point and exactly what we were asking for. You stuck to the law and you told us exactly what you wanted to amend.

Dr. Boer, over to you.

[Prof. Theo Boer]

Ladies and gentlemen, I would like to thank the committee for inviting me today. I will make some remarks, but then I'll also go over to the bill itself.

In 2001 the Dutch Parliament adopted a law that is largely similar to Bill C-14.

For 10 years I was a member of a euthanasia review committee, a committee that decides after the fact whether a case of assisted dying was in accordance with the law. In those years I personally reviewed 4,000 euthanasia cases.

A 2012 government study, based on data collected as early as 2010, concluded that the Dutch law was solid. Until this day, the study is quoted to attest to the robustness of the law.

Admittedly, the Dutch euthanasia law does provide relief to many very ill patients. It provides doctors the necessary legal protection, and in doing so, it also provides transparency.

However, since 2010 the landscape has changed. Last week the euthanasia review committees presented their annual report, which I can show you here. It was presented just a week ago. It says that the numbers have gone up considerably, meaning that since 2010 the numbers went up from 3,000 to 5,500. Today one in 25 patients dies as a result of euthanasia, and we have seen a significant expansion in the pathology behind the euthanasia requests. The number of patients, for example, with dementia went up from 25 to 110 in five years. The number of psychiatric patients went up from two to 56 last year. Likewise, the numbers for euthanasia for people suffering from age-related diseases went up from a handful to 200. Contrary to what one might expect, the suicide numbers also went up, by 36% in the same period.

Before the end of this week, a person who is very dear to me will die through euthanasia. He is a man in his thirties suffering from the consequences of a sex-change operation, which he now sees as a crucial mistake. We have corresponded extensively, and I begged him not to make another decision that is irrevocable. However, the possibility of euthanasia has made him unwilling to seriously consider any other solution. In the words of your own bill, under proposed paragraph 241.2(2)(c), he says that this treatment is no longer acceptable to him.

In today's Canada, my friend would still be alive. My friend did not need pressure from outside, because what sufficed was loneliness, despair, self-contempt, and the societal climate in which euthanasia features as a remedy to serious suffering. I honestly think that the law has contributed to this climate. That's why I think Bill C-14 may need some adjustments. I do not doubt that Bill C-14 has good, noble, and important medical intentions, but I question the effectiveness of its criteria, which in its preamble, are referred to as “robust”.

In the Netherlands, we use exactly the same wording about our own criteria. Fifteen years later, however, I can tell you that even the most robust criteria may become like wax. Once new categories of patients start exploring the limits of the law, the criterion of intolerable suffering, for example, has become largely identical to what a patient wishes. After all, when a person insists on having euthanasia, who are we to question the intolerability of his suffering? Or when a person refuses palliative care, who are we to insist there are still ways that his suffering can be eased in a less radical way?

The developments in the Netherlands are even more remarkable given the increase in the quality of palliative care since the 1990s, the so-called pioneering years of the euthanasia law.

In an article in a journal of the Royal Dutch Medical Association, two ethicists and a doctor suggest 10 rules for patients who want to have euthanasia; for example, be verbally gifted but be humble; do not make a depressed impression on your doctor; if you still enjoy your hobbies, don't mention them; stress the seriousness of your physical suffering; etc.

According to an RDMA survey published last year, 70% of physicians in the Netherlands experienced pressure to perform euthanasia, and 64% are of the opinion that the pressure has increased.

Ladies and gentlemen, the decision you are about to take belongs to the most far reaching that Parliament can ever make. The outcome will influence the way that Canadians will die 30 years or 40 years from now. On a more fundamental level, it will impact the way people define suffering and cope with it. Please, therefore, allow me three remarks.

One, Bill C-14 exempts euthanasia from the Criminal Code. In normal life, any person has the right to do anything that is not unlawful. Consequently, doctors will have the right to perform euthanasia under the given conditions. This right to kill is among the most peculiar elements of the bill. To kill means that an intentional, direct, and irreversible act removes a person from the community of the living. Even on request, such a decision should always remain the exception. The society that legalizes euthanasia is bound to have an ambiguous relationship with the same society's resolve to prevent suicide. I do not think that the exemption from the Criminal Code is the right signal. I would suggest the Dutch system, in which physicians are punishable—hard as that may be—until they have provided proof that they have acted in accordance with the exceptions described in the law, in that order.

Two, given the intrinsically problematic, ethical character of killing, I think it is desirable that Bill C-14 contains unambiguous conscience protection for health care professionals.

Finally, I am probably not the only one who is puzzled by the fact that the requirement that a natural death should be reasonably foreseeable contains no specification. In hindsight wisdom, I think the biggest mistake of the Dutch is their failure to include a requirement of life expectation. This has made possible—and I have done research on this—that the average time between a euthanasia and the natural death that was expected has expanded from days or weeks to months, and in certain cases even years or decades.

Of course, any term has an element of randomness. However, not being specific about the term has even bigger disadvantages, because it gives away the only element that is left in the law that has an objective character. I would strongly suggest, even aware of the [Inaudible--Editor] advantages of it, to include a clear and unnegotiable term, such as a three-month or six-month requirement; and to initiate consultations, always, to alleviate the suffering; and to see to the needs of the people who have a longer life expectancy. Had the Dutch done so, we would not have seen much of the slippery slope that we find ourselves on now.

Thank you very much.

[The Chair, Liberal, Anthony Housefather]

Thank you very much, Dr. Boer. That was much appreciated.

Now we are moving to questions.

We will start with the Conservatives and Mr. Nicholson.

[Rob Nicholson, Conservative, Niagara Falls, ON]

Thank you very much for your testimony today.

Let me start with you, Professor Boer.

You said doctors in the Netherlands feel considerable pressure to perform this. Are there any conscientious objection provisions in the Dutch law?

[Prof. Theo Boer]

That is not needed [Technical difficulty--Editor] because euthanasia in principle is a punishable act. Nobody can ever be obliged to perform something that is an extreme emergency.

[Rob Nicholson, Conservative, Niagara Falls, ON]

But you said in your testimony that an increasing percentage of doctors feel the pressure to perform this. Why is that?

[Prof. Theo Boer]

The former health minister, Els Borst, was a liberal and introduced the law. She had insisted from the very beginning that all health care professionals were free in doing or not doing euthanasia. She also resented the development that doctors were held morally obligated to perform euthanasia. She was killed tragically one year ago.

I would say that it is in spite of the law that we have, there is a strong societal pressure....

[Rob Nicholson, Conservative, Niagara Falls, ON]

Monsieur L'Espérance, there are a number of assisted suicides and euthanasia taking place in Quebec at this time. Do you think this law will make any difference to what's actually happening there, and if so what difference would it make?

[Dr. Georges L'Espérance]

As I said, I think there should be a very clear-cut way of doing things and that it should be written somewhere that assisted suicide in our view is not a good thing, because the frontier with suicide is too short. That's why I strongly feel, and I'm not alone, that medical aid in dying should be medical, as said. There's no way that assisted suicide may be something we should go through with, because there are too many problems. The first one, I would say, is that the the person may just fail in trying to commit suicide, and it's horrible.

[Rob Nicholson, Conservative, Niagara Falls, ON]

In your opinion, will this law make much of a difference to what is taking place right now in Quebec?

[Dr. Georges L'Espérance]

There is no place for assisted suicide in Quebec. It is a medical matter.

It's strictly medical, and I think that is important.

[Rob Nicholson, Conservative, Niagara Falls, ON]

You mentioned as well that this would have to be carried out by...you mentioned doctors, but you said a clinician of some type. What would be your definition of a “clinician of some type”?

[Dr. Georges L'Espérance]

Under Quebec law, practical nurses are not included. That is why we are stressing that

it depends on each province's legislation, because in the federal law there's the perspective of a nurse clinician. That's why.

[Rob Nicholson, Conservative, Niagara Falls, ON]

Ms. Faure, do you think this law should be expanded to include minors?

[Dr. Nacia Faure]

In Quebec, as you know, the law has been ongoing for a few months from the time everything was done well. I believe the number of patients was, the Collège des médeciins thinks, about 15 or 20. Everything has gone very smoothly; everything is good.

As far as expanding the law to minors is concerned, I think it's a little early for us. These are very delicate questions. The population has to be—

[Rob Nicholson, Conservative, Niagara Falls, ON]

In your opinion, in the long term would it include minors?

[Dr. Nacia Faure]

We will have to consider this later. For the time being, we have an important law for patients and we will let it operate for a few months or a few years. We will discuss this possibility later on, bearing in mind the experience of other countries. For now, we believe that it would be premature to include minors.