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

[The Joint Chair, Hon. Kelvin Kenneth Ogilvie (Senator, Nova Scotia (Annapolis Valley - Hants), C)]

Colleagues, we have quorum. I'm calling the meeting to order.

I want to welcome you to the ninth meeting of the Special Joint Committee on Physician-Assisted Dying.

I'm Kelvin Ogilvie, a senator from Nova Scotia, and co-chair of this committee along with my co-chair, Mr. Robert Oliphant, the member of Parliament for Don Valley West.

In today's session we have two panels. We have the Canadian Cancer Society, represented by Gabriel Miller and Kelly Masotti. Appearing by video conference from the First Nations University of Canada, we have Carrie Bourassa, who is a professor in indigenous health studies.

Because of technology, I always invite the video conference contributor to go first.

I would remind you, Ms. Bourassa, that you will have 10 minutes.

Mr. Miller and Ms. Masotti, you have a total of 10 minutes together for your presentation.

With that, Ms. Bourassa, I invite you to make your presentation.

[Prof. Carrie Bourassa, Professor, Indigenous Health Studies, First Nations University of Canada]

Meegwetch. Thank you very much.

I don't have a very long presentation. I doubt that it will take 10 minutes. I want to thank you for this opportunity to present. I'm sorry that I couldn't be there in person today.

I want to start out with a few points, mainly around the health and history of indigenous people. I'm sure these are things you already know, but I want to state them for the record.

For indigenous people, given our history and the range of health and socio-economic issues and our age, our vulnerabilities are broad. Indigenous people have the highest suicide rates in Canada, with indigenous young women having the highest suicide rates in Canada, at nearly eight times the national average.

Compared to the general Canadian population, first nations people continue to suffer from high rates of chronic and infectious disease and higher mortality and infant mortality rates. Cardiovascular disease, diabetes, obesity, cancer, stroke, suicide, motor vehicle accidents, and homicide are the major causes of death among indigenous populations.

Preventable deaths due to circulatory diseases account for 23% of all deaths. Injuries account for 22% of all deaths. That is almost 50% of all deaths in our population.

For first nations aged 1 to 44, the most common cause of death was injury and poisoning. The primary cause of death for children less than 10 years old was classified as “unintentional”—or accidents. The potential years of life lost from injury alone were more than for all other causes of death and almost three and a half times that of the general Canadian population.

Consultations with indigenous communities across Canada need to take place with regard to physician-assisted dying. While I have engaged and worked with several different indigenous communities and I myself am indigenous, I cannot speak for them. Further, taking a pan-indigenous approach to policy is not a good idea, given the sensitive nature of this subject and the diversity of indigenous people and belief systems.

The issue of physician-assisted dying is not one that is taking place in communities. As noted, true engagement and communication surrounding this sensitive issue is necessary, and any legislation or policy implemented that affects indigenous people must not only include us but be appropriately communicated to us.

Health care practitioners have an obligation to provide culturally safe care to indigenous people, and that includes physician-assisted dying and understanding all sensitivities surrounding this issue. While strides are being made in palliative end-of-life care, there is still much work to be done, particularly in physician-assisted dying, as this is a very new area for indigenous people, and in my opinion, will require additional training.

That's really all I wanted to say. As I said before, I spent an hour with the committee that went across Canada, speaking about spirituality and belief systems. This is really so very new. Communities have not really had a chance to engage and discuss. There is no policy around this at any of the national levels—the AFN, the MNC, or the ITK. I think there are many sensitivities around this issue, so while I'm honoured to be here to perhaps provide some perspective, I certainly cannot speak for communities. From speaking with some of the community members who I've worked with and with some indigenous physicians, I know that certainly the greatest need is probably community engagement.

I will leave it at that.

[The Joint Chair, Hon. Kelvin Kenneth Ogilvie]

Thank you very much.

I will now turn to the Canadian Cancer Society.

Please begin your presentation.

[Gabriel Miller, Director, Public Issues, Canadian Cancer Society]

Thank you very much, Mr. Chair.

I am very happy to be here today.

My name is Gabriel Miller. I'm the director of public issues for the Canadian Cancer Society here in Ottawa. I'm joined today by my colleague and our assistant director, Kelly Masotti. I'll be delivering our opening comments, but Kelly will be here to help me answer any questions people may have for us.

It's a privilege to be here on behalf of the Canadian Cancer Society, which is Canada's largest national health charity. Canada faces no greater health challenge than cancer. Two in five Canadians can expect to develop the disease during their lifetimes. One out of every four of us can expect to die from cancer, making it our number one cause of death.

I want to thank you for inviting us today, and most importantly, thank you for dedicating your time and attention to this important issue. You're wrestling with some of the most difficult questions any parliamentarian could ever confront, questions about who should be able to seek assistance in dying and who should be able to provide it.

These are important and urgent questions; however, we're not here to help you answer them. We have neither the expertise nor the authority.

We are here to advise you on a related issue, and that issue is palliative care—care designed to protect the quality of life of critically ill patients and their families. Any serious conversation about the needs of severely ill Canadians must include palliative care, and any responsible policy on assisted dying must guarantee access to quality palliative care for all Canadians.

Three weeks ago, we released a new report entitled “Right to Care: Palliative care for all Canadians”. The report found that due to serious gaps in palliative care across the country, thousands of critically ill Canadians are not receiving proper care. That's hurting patients and families, and it's increasing health care costs.

In the absence of clear national standards and accountabilities, individual provinces and territories and health regions are left to develop their own policies, programs, and guidelines, which is resulting in inconsistent and inadequate palliative care in many parts of the country. In Ontario, 40% of cancer patients do not receive a palliative care assessment in their last year of life. In some regions of Atlantic and western Canada, less than half of the people who die in hospital receive palliative care.

Often, palliative care can be provided most effectively and affordably outside of hospitals, yet one of every two Canadian cancer deaths occurs in acute care hospitals, despite the preference of most patients to die at home. By global standards, Canada does a poor job of providing affordable end-of-life care, ranking 27th in a recent comparison of 40 countries. By expanding home care and improving support for caregivers, Canada can reduce hospital costs while protecting families from the potentially crippling financial burden of a critical illness.

A costly and confusing system that is failing too many patients, that's what our report found. But you don't need to take our word for it. This is an area where parliamentarians have done some outstanding work over the years. As the federal panel on assisted dying pointed out in their report, the Senate published studies on palliative care in 1995, 2000, 2005, and 2010. In addition, there are the findings of the federal and provincial panels. Also, the issue of palliative care and end-of-life care was touched on, importantly, in the Romanow report on health care.

Going back to 2000, the report led by Senator Sharon Carstairs found that palliative care was often based on the luck of the draw rather than being a basic entitlement of Canadians. It found that palliative care was provided in hospitals, long-term care facilities, and hospices, as well as through home care, and that when it was provided in hospital it was fully publicly covered, but when it was provided at home, only some services and some drugs were covered, depending on the territory, province, or region.

The Romanow report found that there were considerable disparities in access to palliative care across the country, and that these services had been developed on an ad hoc basis and were limited by the financial capability of communities and charitable organizations. Consequently, many Canadians did not have access to palliative care.

The root of this issue is that only medically necessary hospital services are currently insured under the Canada Health Act, with additional care and services paid for through provincial programs and private insurers, and by patients and families themselves. This complex and piecemeal funding is particularly problematic for palliative care, which often can and should be delivered outside of the hospital setting.

Other contributing factors include a lack of national standards and data collection, insufficient training for health care providers, insufficient information and support for patients, and inadequate investment in palliative care services.

How do we fix this?

We need to begin by making palliative care a top priority for federal and provincial governments as they craft a new health accord over the coming year. Specifically, we are calling on both federal and provincial governments to enact new legislation guaranteeing universal access to palliative care; to expand palliative care generally and home-based services in particular; to increase support for patients and family caregivers; to develop and implement national palliative care standards; and to increase training for health care providers in palliative care.

Palliative care doesn't have the same complexity as assisted dying. It is simply the notion that people should be well cared for—as people—to minimize their suffering and maximize their enjoyment of life. The only enduring mystery is how Canada has failed for so long to fix its broken palliative care system.

Canadians believe in the right of all people to access reliable, affordable, high-quality medical care. Palliative care is necessary, and the need will only grow more urgent as our older population grows. It's time to recognize the right to palliative care and to build a health system that delivers it.

Thank you very much.

[The Joint Chair, Hon. Kelvin Kenneth Ogilvie]

Thank you.

We'll now turn to questions.

For the benefit of the witnesses, I'll note that each member of the committee has five minutes. That includes the time for the question and the response. Because we have a video conference, I would ask members of the committee to make sure they direct their questions and identify the individual they want the question to go to.

Mr. Aldag.

[John Aldag, Liberal, Cloverdale—Langley City, BC]

Thank you.

I'm going to start with some questions for you, Professor Bourassa. That's where I'm going to aim the first bit of questioning.

I fully appreciate your comments about not being able to speak for the diversity of communities that we find within the indigenous populations of Canada. They are extremely diverse. I realize that one person simply can't represent them, but I would like your thoughts, if you can direct us, on pitfalls to avoid, perhaps, or on the types of discussions we should be having.

With that in mind, I've had the chance to live in a number of rural and remote areas, including eight years north of 60, and many indigenous communities are underserved medically. Part of the Carter decision talks about access. As we look at accessibility to physician-assisted dying for those who choose to participate, I'm wondering if you have any thoughts related to that question of access from what you know of the diversity of indigenous communities across a range of options in Canada. Are there any thoughts you can share on how we can consider the question of access?

[Prof. Carrie Bourassa]

That's a great question. As the previous speaker was speaking, I was agreeing—I apologize, but I've forgotten his name—because everything he was saying applies to indigenous people as well. If you think just about access to end-of-life and palliative care for indigenous people, it's even worse, particularly in northern and remote communities, so if you're talking about physician-assisted dying, I think that is one of the main issues.

You can't account for the diverse beliefs around whether or not physician-assisted dying will be accepted. I think it's something that will be the same in indigenous communities as it will be in broader communities. Some people are going to be accepting of it, and some people will not be. But when it comes to access, there are going to be issues that are similar to those right now about appropriate services. It's not only about appropriate services. It's about culturally appropriate end-of-life and palliative care services.

Right now, for indigenous people, it's not only about access to end-of-life care services. It's about culturally appropriate end-of-life care services. When I was referring to training for physician-assisted dying, that's what I was referring to. How are you thinking about the service itself and the training of the physicians? People are going to be seeking out culturally safe services. What will that look like? If we're just getting there for end-of-life and palliative care, what is it going to look like for physician-assisted dying?

It's about access, but it's also about access around culturally appropriate and culturally safe care and what that means in those communities. It might look different from community to community or region to region. Certainly, in end-of-life and palliative care, that's what we're talking about now: what culturally safe services would look like.

[John Aldag, Liberal, Cloverdale—Langley City, BC]

In your comments, you also talked about vulnerabilities, and I'd like to explore a bit of that. We'll be looking at culturally sensitive discussions on physician-assisted dying and looking at both on-reserve and off-reserve populations and trying to understand what additional vulnerabilities there are. You talked about some of the absolutely horrific statistics that the indigenous populations already are faced with concerning life and death in Canada.

One of the reports I read was a summary about people who have already had access to physician-assisted dying in other jurisdictions. In a lot of cases, they were talking about how it's almost a service that I interpreted to be for the elite. You have a lot of white men with a university education and with above average incomes who are accepting or taking advantage of physician-assisted dying. I'm really concerned. Given some of the vulnerabilities of the population, if we want this to be universally accessible, would you say that's a concern we should be looking at?

[Prof. Carrie Bourassa]

Yes, I spoke about this, of course, in the first consultation. It is a concern. The reason it's a concern is that in our population, end-of-life palliative care isn't necessarily for an elderly population. We have multiple deaths in our communities. We have multiple suicides. We have young people who are dying. It's a real issue in our communities that we have a lot of people dying in the younger populations.

When you think about physician-assisted dying, you think about what message that might send in a community where you've just had a number of youths who may have committed suicide or who have been in motor vehicle accidents. It might not be as accepted. It might not be something that is welcomed. That's why I was speaking to really communicating what physician-assisted dying could mean in communities and to really engaging communities around this. If you want it to be accessible, it's going to have to be well communicated.

You talked about access. Who would access it? Where might it make sense to have access to it? I can see it being used in cases where you have.... We talk about this concept of not wanting someone to “die hard”. If you have a terminally ill patient who is suffering, I could see a family wanting to access a physician-assisted death, but it would be in a very particular circumstance, because we don't want someone to suffer and die hard, if you see what I mean.

There are circumstances where I could see that access being welcomed, and then there are some circumstances where, if a community has just had some very tragic losses, I could see them not wanting anything to do with physician-assisted death. It's really about context, understanding the community, and understanding where it would be something that's acceptable and where it would not be acceptable.

[The Joint Chair, Hon. Kelvin Kenneth Ogilvie]

Thank you.

Mr. Warawa.

[Mark Warawa, Conservative, Langley—Aldergrove, BC]

Thank you, Mr. Chair. I will split my time with Mr. Deltell.

Thank you to the witnesses.

First, to the Canadian Cancer Society, thank you for your highlights on the importance of palliative care. You've shared the importance of palliative care and you've also highlighted the fact that in Canada right now palliative care is not readily available for a large percentage of the population. We were told by Health Canada that 70% of Canadians do not have access to quality health care.

The Supreme Court, on the other hand, has said that by June 6 we need to provide legislation that permits physician-assisted dying. Let's say palliative care were to be a component, one of the safeguards, to ensure that people were giving informed consent. In terms of some of the issues causing people to consider hastening their death, would you think palliative care would be a very important component to ensure that there is truly informed consent?

The second part of that question is this. Should the decision by the previous Parliament to ensure that we have a national strategy on palliative care, that we have this change of culture in Canada, start with, within this legislative requirement, palliative care being offered to people—anyone? We're not talking a large number, but it would be required to be offered to people who are considering hastening their death.

[Gabriel Miller]

Based on everything I've read about this, I think it makes a great deal of sense to say that palliative care needs to be available and that it needs to be an option in any scenario where assisted death is made available.

I would only go a step further to say that we need to think of palliative care as something that is provided to every Canadian who is dealing with a life-threatening illness and is part of their treatment. Managing their pain, dealing with their emotional and psychological needs, helping them to receive care in the best place possible—those will all be part of their treatment right through, with particular emphasis, of course, when people face end-of-life issues and also when they're confronting the kinds of choices you describe.

[Mark Warawa, Conservative, Langley—Aldergrove, BC]

Thank you.

[The Joint Chair, Hon. Kelvin Kenneth Ogilvie]

Mr. Deltell.

[Gérard Deltell, Conservative, Louis-Saint-Laurent, QC]

Thank you, Mr. Chairman.

Thank you, Mr. Warawa.

Ladies and gentlemen, welcome to your Parliament.

I will continue in English, because my question will be short.

We're not here to say whether physician-assisted dying is good or not. The main issue we're talking about today is “how”. The main question we're asking is this. Do you think the federal government should clearly indicate to the provincial legislatures how to deal with that, or do you think the federal government should let the provincial legislatures have their own definitions of how to help people at the end of their lives?

[Gabriel Miller]

I think I can speak on behalf of the organization on this point and say that we need national guarantees in terms of what Canadians can expect to receive in end-of-life care and a common set of standards and definitions around the terms we're using, so that there is a comparable experience for Canadians. As well, as I think Canadians expect, universal access to equal services and support will be guaranteed across the country.

[The Joint Chair, Hon. Kelvin Kenneth Ogilvie]

Thank you.

Mr. Rankin, I understand you're sharing your time with Madam Sansoucy?

[Murray Rankin, NDP, Victoria, BC]

No, not necessarily. She's been generous....

[The Joint Chair, Hon. Kelvin Kenneth Ogilvie]

Pardon me.

[Murray Rankin, NDP, Victoria, BC]

First of all, to Professor Bourassa from the First Nations University, thank you very much for your presentation.

You talked about the fact that there was no specific policy from leading indigenous organizations, the AFN and the like, yet you stressed the need for culturally adopted services in this field and in others. From your experience, do you see a role for traditional indigenous healers in this exercise of physician-assisted dying and constitutional rights? We've heard testimony that nurse practitioners in remote communities may well be able to play a role here. I'm wondering if you can envisage a role for traditional indigenous healers.

[Prof. Carrie Bourassa]

That would definitely be great.

The thing is, this is already happening. Maybe it's not with physician-assisted dying, but it's already happening in health care in general in New Zealand. They're recognized. They work alongside physicians and nurse practitioners, and they are as recognized as any other medical professional. I think Canada really needs to consider this.

In this particular instance, with this very sensitive issue, I think they would be most welcome. I think they would definitely enhance any kind of experience by indigenous people. Right now, even in end-of-life palliative care, we're getting to the point where most hospitals will at least allow an elder or a traditional healer to come in at end of life. It's not happening in every hospital, but it's happening in most. We're starting to get to that point where maybe they're not working alongside physicians but they're being recognized. I think we have to get to that point and that doing so would be highly recommended..

[Murray Rankin, NDP, Victoria, BC]

Thank you.

My next question is to the Canadian Cancer Society.

You talked very passionately about the need for improved palliative care in Canada. Given the requirement under the Canada Health Act for comprehensiveness and accessibility, and given the fact that those are just not there, I would like your reaction to having the federal government withhold funds, under the Canada health transfer, from those provinces that simply do not step up and provide funding for palliative care. Is that something you might be prepared to endorse?

[Gabriel Miller]

I heard a similar question put to the minister by the media. I thought she did a pretty good job of handling the question, so I'll borrow from her. I don't think anyone would want the conversation to begin with ultimatums being issued by one order of government to another on this. Hopefully, there's going to be enough of a sense of a common mission, partly as a result of the need to respond to the Supreme Court but also out of recognition of the need to address this issue, that the provinces and the federal government can come together and agree that, as part of the tens of billions that are spent on health care, Canadians deserve a guarantee that they'll receive access to palliative care.

I do think that, as part of an accountability framework for a new health accord, there need to be targets for palliative care, and home care in particular. Canadians need to see, in exchange for the money that goes out across the country for health care, the kinds of results being achieved in their communities compared to those in the rest of the country.

[Murray Rankin, NDP, Victoria, BC]

I know you've been reluctant to jump into the physician-assisted dying part of the equation, but I'm going to push it anyway, if I may. This is a requirement of the Constitution. As my colleague said, we're here to figure out how to implement the court's decision.

Given the experience the Canadian Cancer Society has with people suffering, I would presume that you take the position that we ought to be moving forward with doctors, perhaps with a conscientious right not to proceed, but that generally this service ought to be available at the end of life. I see you nodding.

In that case, do you agree that publicly funded health care institutions like hospitals and hospices should be required to provide physician-assisted dying on their premises?

[Gabriel Miller]

I won't speak to the question of where, because I wouldn't be speaking for anyone expect for me, and that's of no use to you whatsoever, I promise you.

Our view is that end-of-life care needs to be considered to be medically necessary care. We have a principle in this country that, just by virtue of being Canadian, people deserve access to that, regardless of their ability to pay. It seems, certainly, that as a result of the court's decision, this will now be part of the spectrum of care available to Canadians. Access to that care should not depend on people's pocketbooks.