Medical Assistance in Dying Committee on April 28th, 2022

[Dr. Sandy Buchman]

I'm going to go right there with the question, and the answer is likely yes.

When an individual's suffering is a conglomeration of their past—they may have had severe trauma earlier in their life—we learn very much about performing trauma-informed histories. There's been a sequence of events, given the social and structural determinants of their life, everything from systemic racism perhaps, to mental health issues and addiction issues, that render them in the situation they are in.

We're working very downstream. I think it's really critically important to look at what's happening upstream very early on, not only the importance of directing the root causes of the social determinants, such as racism, sexism, homophobia, transphobia, colonialism, etc. Those are the roots of the social determinants of health and why it is key that we begin to address them at the roots. For those people who have gone through it, that's why it is so critical that we need equitable access to care, and particularly equitable access to palliative care.

We happen to have a program in downtown Toronto—and there are a handful of them across the country—but for the most part, folks don't have access to the palliative care services, or even the primary care services, the mental health and addiction services that are necessary to serve them. So we're down the road—we're downstream—and all we can do, then, is our very, very best to address their suffering, in all of its domains, as I referred to before.

[Alistair MacGregor, NDP, Cowichan—Malahat—Langford, BC]

Thank you for that.

In general, when you are meeting patients for the first time to have that very difficult discussion on what their options are, what's your sense of their familiarity with what palliative care involves or what medical assistance in dying involves when you first talk to them? Is that very vulnerable population aware of what those two types of care involve?

[Dr. Sandy Buchman]

It's hard to generalize, but as a rule, no. Most Canadians aren't really aware of palliative care, for example, until they happen to encounter it themselves or with a family member. The same is true for medical assistance in dying. A lot of the more vulnerable people haven't had the opportunities to have the same kind of education in health literacy as many other more fortunate Canadians. One of the reasons is that it's usually those of higher socio-economic and higher educational status who would opt for medical assistance in dying.

We have to do our best to educate them about their options, and if they express this wish to hasten death, then they have that right, like an option for any medical treatment. In this country they have a right to know about medical assistance in dying, but it's very important that we assess their vulnerability in a comprehensive way. That's why I stressed earlier that our education and competency in being able to assess this comprehensively is a critical issue.

[The Joint Chair, Hon. Yonah Martin]

Thank you.

At this time, I will ask my co-chair to step back in for questions from the senators.

[The Joint Chair, Liberal, Marc Garneau]

Thank you, Senator Martin.

We'll start off with Senator Mégie.

Madam Senator, you have the floor for three minutes.

[Marie-Françoise Mégie]

Thank you, Mr. Chair.

I thank the witnesses for their testimony.

I also thank my former colleague Dr. Tremblay for being here with us.

Dr. Tremblay, I know that you worked with the Quebec National Institute of Public Health on palliative care indicators. We have heard and we still hear that we need to improve palliative care, that we need quality palliative care.

Can you tell us about these indicators? What criteria were used to select them? How can these indicators enable various levels of government to improve palliative care?

[Dr. Marjorie Tremblay]

Thank you, Dr. Mégie.

The latest report is from April 2021. Unfortunately, in Quebec, data on palliative care are very scarce. In this study, which was conducted from 2002 to 2016, we collected data on eight palliative care indicators. These indicators had been used in the past and were reviewed. Of the 10 indicators previously used, we kept eight. In this report we looked at what was happening to the population that could benefit from hospice palliative care. This study did not look at people who were receiving palliative care at home or in settings such as residential and long-term care centres. These indicators provide a lot of information about what is happening in Quebec.

I'll give you an example. Thanks to these indicators, we now know the place of death in Quebec. The main place of death in Quebec is the hospital. Four out of 10 patients likely to benefit from palliative care will visit an emergency room in the last two weeks of their lives. One in 10 people likely to benefit from palliative care will stay in intensive care. These indicators show us that early identification is not happening and that there is no integrated palliative approach.

Patients are said to have access to palliative care, but they actually have access to end-of-life palliative care when a catastrophe or complication occurs and the patient did not know they were going to die. The patient is in shock and distress. That's what it's all about. The patient is in distress because of their imminent death. They are transferred to palliative care, because curative care is no longer possible, and medication is started to relieve their symptoms.

There is a misinterpretation by the general population, and even by some professionals, that a patient receiving morphine will soon die. If the patient had been started on morphine five years earlier for pain or shortness of breath due to heart failure, for example, no one would say that morphine killed him at the end of his life. The myths would stop and people would stop being afraid of drugs. Indicators are extremely important because they allow all responsible authorities to understand the impact of decisions on everyone and to monitor progress.

[The Joint Chair, Liberal, Marc Garneau]

Thank you very much, Dr. Tremblay.

We will now go to Senator Kutcher.

You have three minutes.

[Stanley Kutcher]

Thank you very much, Mr. Chair.

My questions are for Dr. Buchman.

We know that palliative care is inadequately funded and that there are substantial challenges to accessing public palliative care. We also know that access to MAID can be similarly problematic. Both areas are underfunded. Is the solution to fund one over the other by robbing Peter to pay Paul?

The second question is that quality palliative care has been sometimes characterized as needing to be provided by palliative care specialists in hospices. Others have noted that home-based palliative care can be provided by primary care physicians and it can be of very high quality.

What are your thoughts on these issues?

[Dr. Sandy Buchman]

I'm going to start with the second question first, if I may. I spend most of my time providing home-based palliative care or, as earlier mentioned, on the streets. I'm a very strong believer that the palliative care approach can be provided by primary care physicians, family physicians, nurse practitioners, etc. Probably about 70% of palliative care could be provided by primary care.

Unfortunately, due to many reasons, everything from a lack of sufficient training to even just lack of confidence, to payment models, etc., very few family physicians continue to provide home-based care of any sort, let alone palliative care.

I work very much on models that are just-in-time palliative care, 1-800 palliative care, where a family physician could call a palliative care specialist for just-in-time supports to manage pain crises or delirium in the middle of the night. I believe very strongly in supporting that, and continuing education.

With regard to your second point about inadequate funding, this is a problem throughout the health care system, of course. There is a fixed amount of money. We need to be able to support access to palliative care—hugely. I spend most of my life advocating for that. At the same time, there's inequitable access to medical assistance in dying across the country, and it's becoming even more so, after Bill C-7, and perhaps even in the future, in March 2023, when medical disorders as an underlying condition will be legal.

Having said that, we need huge amounts to be funded, from the very basics with regard to primary care, of course.... We advocated for that prior to the pandemic, with the current Liberal government, and never really got the funding for primary care that's needed. We need to be advocating all the time for sufficient training and access for both palliative care and medical assistance in dying, in my opinion.

[The Joint Chair, Liberal, Marc Garneau]

Thank you very much.

I now yield the floor to Senator Dalphond.

[Pierre Dalphond]

Thank you, Mr. Chair.

My question is for Dr. Buchman.

You work with the more vulnerable in society, those who are often isolated and have been left out by society in general. When they come to you, it's because they need palliative care or they want to receive MAID. You are a MAID assessor.

In your practice, have you noticed that this subgroup of most vulnerable persons are acting differently from the other subgroups of people, that they are more reliant on MAID than other groups, because they feel that their lives are worthless?

[Dr. Sandy Buchman]

No. That has not been my experience at all. In fact, it's very interesting. When I work with the more vulnerable patients, they very much want aggressive medical care.

Often we talk about goals of care, or have end-of-life discussions with our patients, and whether they want to go through resuscitation, more comfort measures. Most of those vulnerable patients have an extreme lack of trust, for many good reasons, in the health care system. They become kind of suspicious if you start talking about maybe proceeding with a “do not resuscitate” or that it might cause more harm than good, etc. In fact, they want everything possible done, even maybe, from another perspective, to their detriment.

The experience with more vulnerable people asking for medical assistance in dying is actually quite uncommon. As known from many data, it's usually those who have a sense of control over their lives, usually higher socio-economic status, Caucasian, etc. All of those factors are very clear.

I would have to say there are patients who have asked for that, and that's when we go into the mode of addressing all of the issues of suffering, including the psychosocial issues and the mental health issues they are experiencing.

[The Joint Chair, Liberal, Marc Garneau]

Thank you, Senator.

Go ahead, Senator Wallin.

[Pamela Wallin]

Thank you very much.

I have two questions to Dr. Buchman.

We have heard other testimony from professionals in the field of palliative care that somehow, when we get to the end of palliative care, it is not their responsibility to really offer the MAID option or to even have that discussion at the front end of opting for palliative care.

I keep coming back to this, and I'm not sure it's the right word, but do we have to on some level see this as a continuum and have that conversation at the front end?

You also said something that interested me and that is that the presence of a MAID option allows people to take on palliative care because they know there is another option if that doesn't work.

[Dr. Sandy Buchman]

A very interesting and challenging question is when to introduce the option or bring up the idea of MAID. In some jurisdictions such as in Australia, where I've spoken with regard to this, they prohibit physicians from bringing up the option of medical assistance in dying.

There's a power differential between physicians and our patients. They can be very influenced by that kind of authority. On the other hand, of course, it's like talking about cancer and not saying that there's a chemotherapy option available, so fully informed consent of what's available to a patient I think becomes critical as is their moral and ethical right to have all the information that's available.

This is where I go back to competency and skill in how we share information. Ultimately, yes, I think patients have the right to have full knowledge and information about it. When that is introduced is where skill and the best professional judgment come in.

For some patients, as you explore their various options and see where they're going, and as you work, as I said, towards trying to address their suffering—I keep coming back to it because it's key—we find that the majority of patients will accept what you are offering, but there's always going to be a subset who absolutely find whatever treatment you offer unacceptable. At that time, I think it's incumbent upon us as professionals to let them know that there is such an option as an eligibility assessment for MAID. I do not say they have a right to MAID; I say they have an eligibility assessment option for MAID. I think it's a key difference.

[Pamela Wallin]

I went through this process with a friend recently. It was almost the opposite way. She said to her doctors, when the diagnosis was terminal, that she wanted the MAID option, and then they had the discussion with her about using palliative treatment in the interim to maximize her quality of life until her chosen date.

[Dr. Sandy Buchman]

For that patient, it sounds like that was the best course for them. It sounds very reasonable.

[Pamela Wallin]

Thanks very much.

[The Joint Chair, Liberal, Marc Garneau]

We'll now go to Senator Martin.

[The Joint Chair, Hon. Yonah Martin]

Thank you, Mr. Co-Chair.

My question will be for Dr. Chochinov.

I thought the examples you gave us really help us understand what true autonomy means and how important it is for patients to have that real choice.

Dr. Chochinov, can you tell us about the kind of suffering you see in end-of-life patients? What else could be done to better remediate suffering in end-of-life patients?

[Dr. Harvey Max Chochinov]

I've heard several times today and from various different witnesses the idea that there really is nothing we can do for existential distress, that there is no effective treatment and that there's no effective approach. I have to say, I've been working in palliative care for the last 35 years exclusively in the area of looking at end-of-life distress, existential distress, psychiatric and psychological distress.

For 15 years, I've been the co-editor of the Handbook of Psychiatry in Palliative Medicine, psychosocial care for the terminally ill. This is a book that will be coming out in its third edition this coming September with 45 chapters from various different experts around the world, so the idea that there is nothing that can be done is really something that I have to take exception to.

There is a massive literature that is out there looking at ways in which we can start to mitigate end-of-life distress. I'm also the co-editor of a regular journal called Palliative & Supportive Care, a journal that is entirely devoted to addressing end-of-life distress of the existential kind. This notion that MAID is the only card in our deck I think is terribly unjustified, and there are various different approaches that are available.

For instance, one of the things that causes a great deal of suffering in patients nearing end of life is an undermining of their sense of personhood, an assault on their sense of dignity, if you will, so we find ways to try to affirm personhood. This has us looking at everything from the attitudes and disposition of the health care provider, teaching them and training them that their own outlook and their own disposition can have a profound influence on the patient's sense of well-being and sense of dignity, to more formatted kinds of interventions.

One intervention we call the patient dignity question, where we ask about what we would need known about that individual in order to take the best care of them possible. It's an opportunity to put personhood on the radar.

Then there are a number of psychotherapies. I mentioned in my brief that I've developed dignity therapy, which is based on generativity and giving people an opportunity to leave a legacy. Gary Rodin in Toronto is developing CALM therapy, and Bill Breitbart at Memorial Sloan Kettering has been looking at meaning-centred therapy.

I would not want to leave the committee with the impression that this notion that there is nothing to be done about existential distress. Unequivocally, obviously, that is being done with some intent or purpose that I can't claim to understand, but we need to understand. We need to know that there's a whole cadre of professionals around the world. This is not just a Winnipeg event or a Canada event; this is a global effort to try to address, understand and mitigate distress that is being tested, by the way, with research, including randomized control trials that show its efficacy.

[The Joint Chair, Hon. Yonah Martin]

That's a good way to end this panel.

[The Joint Chair, Liberal, Marc Garneau]

Thank you to the panel.

I'm afraid we're at the end of our hour, but it has been very, very helpful to hear you, Dr. Chochinov, Dr. Buchman and Dr. Tremblay. Thank you for taking part of your day to answer our questions. This will help us in what is a very important and difficult issue, as you've all clearly pointed out. We very much appreciate it. Thank you very much for coming.

With that, for the members of the committee, it looks like we will be meeting two times next week, on Monday night, of course, and it looks like Thursday as well. We will be focusing on advance requests.

I would like to adjourn this meeting. Thank you.