Palliative Care in Canada — Bernard Lapointe and Philippe Miquel

Alya Niang

It's a subject we don't like to talk about, but death is a fact of life. Over 320,000 Canadians die each year. And as our population ages, there's a growing need for palliative care, designed to ease suffering at the end of life. The Canadian Institute for Health Information (CIHI) has now published its second report on palliative care. The good news is that more Canadians are getting some form of end-of-life care than they were 5 years ago, and more are dying at home, their preferred choice. But there are also signs that many who need palliative care aren't getting it or can't get it because of who they are or where they live. Dr. Bernard Lapointe will tell us more.

Bernard Lapointe

It's an approach that focuses on quality of life, which can be in terms of physical, psychological or social suffering. It's really about support. It's comfort care. And we don't have to wait until someone reaches the end of their life to provide it.

Alya Niang

A pioneer of palliative care and a professor at McGill University, Dr. Lapointe has contributed to its development through his work with several provincial and national organizations, including the Canadian Hospice Palliative Care Association, of which he served as president. Dr. Lapointe has devoted his energy to education and clinical teaching in end-of-life care, inspiring many health care professionals to pursue careers in this specialty, which is essential to respecting human dignity. We'll also be talking to Philippe Miquel, who was a caregiver for his mother until she passed, with the invaluable help of the Palliative Home-Care Society of Greater Montreal.

Philippe Miquel

Palliative care allowed her to preserve her dignity and be in the privacy of her own home. Her friends could come see her. We could cook. She could use her own bathroom. It changed everything, really.

Alya Niang

Hello and welcome to the Canadian Health Information Podcast. I'm your host, Alya Niang. Please bear in mind that the opinions and comments of our guests do not necessarily reflect those of CIHI, but this is a free and open discussion. Today's episode is about CIHI's report on access to palliative care in Canada, which takes stock of the country's situation in terms of providing the best possible end-of-life care.

Hello, Dr. Lapointe. Welcome to the podcast.

Bernard Lapointe

Hello, Ms. Niang. Thank you for having me.

Alya Niang

Hello, Philippe, and welcome to the podcast.

Philippe Miquel

Hello. Thank you very much.

Alya Niang

Dr. Lapointe, you're a pioneer of palliative care in Canada, so you could say that you've dedicated your life to helping people end their lives with dignity. How did you decide this was your mission?

Bernard Lapointe

Well, most of my career has been spent in palliative care settings. However, I started out in 1981 as a family doctor in a community clinic in northern Quebec. I was a true family doctor there, handling everything from pediatrics to geriatrics, and then end-of-life care. That helped me really learn my trade and appreciate the exceptional contributions of other care partners. Because in a community clinic like that, nurses, social workers, orderlies, everyone contributes to the quality of care. That's not necessarily an experience you readily find in a big city like Montréal.

I moved to Montréal in 1985, around the time the first AIDS cases were appearing in the city. And from then on I gradually began caring for people with AIDS more regularly. As you know, at that time, if you had AIDS, there weren't any drugs for it. There were really no alternatives. Patients rapidly declined, quickly reaching the end-of-life stage, and I realized that I didn't know what to do. I didn't have the training to deal with all the existential issues, provide comfort, have the appropriate discussions and, beyond that, manage the symptoms or even the pain. That wasn't really part of the medical curriculum in the late '70s and early '80s. That's when I became interested in it. I got involved at the community level in Montréal by working with Sida-Aide de Montréal, an AIDS action committee, and later helped develop the first resources and palliative care residences for people living with HIV. Gradually, my career took a turn, and I became a full-time senior advisor in Ottawa in 1990 and 1991. My work involved the health care network, support for people living with Alzheimer's, and negotiations with the provinces and professional associations. Then I came back to Montréal in 1991 and joined Dr. Balfour Mount's team. He pioneered palliative care in Canada. Dr. Balfour started one of the first services. I think there's been some discussion as to whether Winnipeg or Montréal was the first, but his was certainly one of the first services. And it was exemplary because not only was it a hospital service, but it also included a consultation and liaison service for people who were mainly receiving active cancer treatment, as well as a home care service. So we covered the 3 major aspects of palliative care, which we should still have today and which aren't necessarily there.

Alya Niang

Absolutely. What is a palliative approach to care, and why is it important?

Bernard Lapointe

It's an approach that focuses on quality of life, which can be in terms of physical, psychological or social suffering. It's really about support. It's comfort care. And we don't have to wait until someone reaches the end of their life to provide it. It starts as soon as we come into contact with an individual presenting the symptoms. We'll come back to this in a moment, but palliative care is often confused with end-of-life care. And that's a major problem. We often hear doctors say to patients, “Well, we're not there yet.” The patient is in pain and they have needs, but they say they're not there yet. That means that by the time they get there, there's no more time. There's no time to initiate care, galvanize teams around the patient and their family, organize care and discuss what they want. That's one of the problems mentioned in your report that we've been highlighting for a long time, and it's nothing new. People feel rushed into an end-of-life experience that they didn't expect and, more importantly, wasn't what they wanted.

Alya Niang

Speaking of our report, since you've had time to read it, what is the significance of this latest CIHI report?

Bernard Lapointe

Well first of all, for once, we have some good news. And that's very important to me. We can see that people have a better understanding of palliative care, and that it's not just end-of-life care. Secondly, more people have access to palliative care now, meaning in 2022, than 4 years previously, in 2018. I think there are many reasons for that. There's more knowledge, a more widespread implementation of the palliative approach in care settings and a better understanding of what the care is. But more people are dying at home as well. That's the other good news, and in that regard I can't wait to see your next report. Because I wonder about COVID and the impact the pandemic had on people wanting to die in the hospital. As you may recall, and I experienced this with my patients, families weren't allowed in hospital rooms. There could only be 1 person at a time. It was difficult, and people were afraid of getting the virus. There really was a framework that made the hospital less appealing. So more people, many of my patients, decided they wanted to stay home. So that may be it, but I think beyond that, we'll see a distinction in a future report. I also think there's a growing desire to die surrounded by those we love in an environment we love that reflects who we are, and to be supported and get proper care where we want to get it, which is at home for most patients.

Alya Niang

Clearly, that's the ideal.

Bernard Lapointe

I had many virtual consultations with patients who stayed home throughout the pandemic, and they were very happy to be there. They were also very glad to have regular follow-up, to have virtual as well as in-person support from caregivers, whether they were nurses, social workers, natural caregivers or professional caregivers.

Alya Niang

Dr. Lapointe, one of the key findings was that 58% of those who died in 2021–2022 received some form of palliative care. And that figure was up 6% from 5 years prior. How do you react to that?

Bernard Lapointe

Well I'm very happy about that. It seems to be in line with developments in the clinical field. There has been a major effort in the last 40 years to develop and organize palliative care. Across the country, I see regions where there used to be very little such care and it's now very well organized. And it's really interesting to see how innovative we've been in distributing it. I'll give you just 1 example. You cited it in your report, but I think it's a great example: emergency medical technicians (EMTs). For people who live in very rural areas, which are often far from health centres such as hospitals, EMTs are the ones who are first called by family members to support patients who are suddenly in a lot of pain, very out of breath or agitated. And instead of putting them in the ambulance and taking them to the hospital to die, or even having them die in the ambulance, EMTs are trained to give people the care they need on the spot, alongside other caregivers, doctors and nurses. This training has helped many people get optimal relief and stay home in a crisis, which would otherwise be... Even in a big city like Montréal, you call an ambulance without thinking twice about it. You get in the ambulance and you go to the emergency room. That's often the reality.

Alya Niang

Philippe, can you tell us about your experience as a caregiver?

Philippe Miquel

My mother battled cancer for nearly 10 years. It was lung cancer and it started in 2014. In the beginning, it wasn't so bad. She didn't have too many health problems related to the cancer. It was the surgery that was more problematic. After that, she continued to get chemo treatments for several years, until November, when she started to have severe back pain. One of her vertebrae had been attacked by the cancer and had collapsed, so she started taking morphine.

And then, of course, her movements were more restricted because of her broken back. From that point on, she needed more help at home for day-to-day tasks. So I started to help her more, and her condition began to increasingly deteriorate. Over the holidays, I think she also had pneumonia.

Alya Niang

Mm-hmm.

Philippe Miquel

In any case, she really wasn't well. We thought she was dying. Fortunately, at the hospital, they were able to give her some medication that helped quite a bit. We wanted to be prepared for when she became less independent. That's when someone I knew told me about the Palliative Home-Care Society of Greater Montreal. They came to meet us right away. It was great, frankly, to have someone who was used to this kind of situation, was familiar with palliative care, and could advise us not only on the health care aspects, but also on how we should organize ourselves. We weren't really sure about it, because, you know, my mother was very proud. She wanted to be independent, so she didn't accept help easily.

Alya Niang

I can imagine.

Philippe Miquel

She wanted to do everything herself.

Alya Niang

Right.

Philippe Miquel

But gradually, we noticed she was having a little more trouble. The people from palliative care helped us understand things better by sharing their experiences caring for other people. So we had a nurse and a social worker come. They were very warm and highly skilled. They had a great deal of expertise and gave us a lot of guidance. Of course, my mother's health began to get worse. That's when the palliative care people helped us set up oxygen tanks and a compressor in the house. We had a hospital bed, a small chair for bathing and a small wheelchair, which we hardly used in the end. And it all happened quite naturally, which was really great. It was a big weight off our shoulders. I guess if I'd had to find a bed, I'd have had to call several places. I wouldn't know the right kind to get. In any case, it went very smoothly and organically. And that was a huge help. Obviously, when you have someone at home who's very ill, who's about to die, you're very preoccupied with that. And you don't have much time to start organizing other things, especially since your own life goes on, doesn't it?

Alya Niang

Absolutely. Philippe, I'd like to know, was it difficult to balance your work with caring for your mother? How did you feel emotionally and physically?

Philippe Miquel

Well, I'm a freelancer. So I don't have a 9-to-5 job every day. I quickly decided in early 2023 not to accept any new contracts to give myself some time. That was really my goal. My mother didn't want to die in the hospital. So we told ourselves that we'd try to keep her at home as long as possible. I decided not to take on any new contracts so I could be there more easily. And I'm glad I did that, because it took up a lot of my time. Seeing your parent decline, going from being a pillar, the person who always carried you, to this person you eventually have to carry yourself, is a really painful journey. It began long before palliative care, but in the end, it was still... I watched things get more difficult for my mother. She couldn't go out anymore. Just walking to the kitchen to get something to eat was a major challenge. Then to see her suffer — she was in so much pain, her breathing was laboured — was extremely painful. As far as work is concerned, with all the emotions, it really takes a back seat when someone that important to you is dying. I had a few small contracts, and I have to admit that I had a hard time focusing. In the last few weeks, it was hard to work more than 2 hours a day. Work seemed much less important, to be honest.

Alya Niang

I can understand that. So you were lucky enough to be able to balance the two and to take the time to be with your mother like you wanted. That was your priority.

Philippe Miquel

Exactly. I always said that I didn't want to find myself at the funeral home thinking, “I should have been there more.”

Alya Niang

You didn't want to have regrets.

Philippe Miquel

Exactly.

Alya Niang

Dr. Lapointe, the vast majority of people say they want to die at home, and the rate for those who did so rose from 7% to 13%. What's your reaction to those figures?

Bernard Lapointe

Well, I'm very happy. I'd like it to be an option for the vast majority of people. I think that's where we're heading. There are a few conditions we need to meet for that to happen. We have to stop saying that we'll talk about it when the time is right. I think we need to enable families and patients to say, “I don't know when it's going to happen, but when it does, my end-of-life choices are final. I want to be at home. I want to have comfort care. I want people to be able to visit me. I want my life partner to have supportive care.” I want people to be able to talk about it, because there are some who will say that they want all the available treatments. Okay? For some people, staying at home won't be an option. Some argue, and I think this is legitimate, that we aren't here to force a treatment protocol on anyone. We're here to help people and advise them as best we can. Someone might say, “If I get sick, I want to be in a hospital. I want to be treated. I want them to do everything they can.” Then they'll go to the hospital and they'll get every possible treatment, okay? So, to get back to the issue you mentioned, most people want to be at home, and we have to make sure that's possible.

Alya Niang

The report says that of some 44,000 end-of-life patients who went to the emergency department for some sort of palliative care, the majority, 66%, were admitted to the hospital. Those admissions were largely unplanned, and 1 in 4 died within 24 hours. So what happens when someone who's near death is sent to the hospital?

Bernard Lapointe

Well that's why this care is so important, so that care teams are already with the patient and their family. And they've built a relationship of trust with the care team. If the relationship with the home care or palliative home care team has just been established in the last few days, there hasn't been time to really build trust. Often, people are in crisis mode. The patient is having difficulty breathing, is very agitated or is in a lot of pain, and people don't want to wait. They want to solve the problem. So they head to the emergency room.

Alya Niang

Is that why these people end up in the hospital?

Bernard Lapointe

Yes, because people think it's the only possible solution. The rate of patients that go to the emergency room in the last 3 months of their lives is a performance indicator. The lower the rate, the better the home care is. And it goes without saying that we can manage a lot of things better: our time, the quality of care, support, and the anxiety and worry experienced by families. Again, it depends on how long you take to establish the relationship. So the earlier we refer patients the better. And I would even go so far as to say people shouldn't wait for a health care team to refer them to a palliative care team. They should refer themselves. They should be able to get palliative care. It might not be the norm in health care establishments, but a family or patient should be able to say, “I want palliative care. I want access to palliative care. Who can I talk to? Who can help me with that?” So I think it's very important to promote access, to spread this knowledge and familiarize people with what the team can offer. One of the best examples of palliative care at home is a Quebec model that's currently getting a lot of coverage in the papers. It's intensive home care, where doctors and a team of staff nurses provide care 24 hours a day, 7 days a week. And the patients who get this care generally die at home. In fact, I think 60% to 65% of people enrolled in the intensive home care program die at home.

Alya Niang

Right. I think you sort of answered my next question. The report found that, on average, 49%, or nearly half, of home palliative care programs reported that they were always or usually operating at full capacity. Do you think people are being referred to palliative care too late?

Bernard Lapointe

Many of the palliative care residences are community-supported, so they don't have vast resources in terms of the number of beds, for example. In Quebec, for example, there are a significant number of palliative care residences with 4 to 6 beds. 4 to 6 beds fill up quickly, and they don't empty quickly. So there's pressure. Generally speaking, our resources are operating at full capacity. That capacity is maintained, more or less, by a community's ability to raise funds and to mobilize a community volunteer effort. Everything is interdependent. So the longer you wait, the less likely you will be able to access this resource, that's for sure. The only way out is to increasingly mobilize the caring community movement that we're trying to get off the ground in Canada.

Alya Niang

Dr. Lapointe, I'd like to know who receives palliative care in Canada and who doesn't. And are there gaps or barriers to accessing this care? For example, some studies have shown that people of colour, recent immigrants and First Nations Peoples face barriers. Can you tell us a little more about that?

Bernard Lapointe

Well, I certainly think they're disenfranchised compared with the majority. I'll talk about sexual minorities, for example. They're likely to have much less access to end-of-life or palliative care. Also, there are those in shelters. In addition to being homeless, getting home care is very difficult. In spite of this, I've worked with shelters and community teams that have performed miracles to provide support. When it comes to homelessness, there's also the issue of opioids. There's always a fear that unless they're well managed, there can be opioid-related problems. But that's not necessary. We need to invest in this care. The health and social services authorities have to recognize that there's a need for people to have access to injection sites for pain treatment, pain relief and support. Of course, there's also the delicate situation that newcomers are in. They often come from countries where the medical profession has a less-than-stellar reputation for exercising power and listening to patients. Often, people get here and feel vulnerable. It's all new to them. But at the same time, there's what's going on in their bodies and with their health. At that point, they get anxious. In the past, their fears were often justified. We need to help them label their fears, bring them out in the open and provide support. That's certainly true for the homeless, recent immigrants — particularly from countries where medical care isn't very good — and for certain First Nations communities. I'm thrilled to see the efforts made in First Nations communities in the last 5 or 6 years to develop care programs that not only meet medical and nursing needs, but are also culturally safe. Because palliative care isn't just about the body. It's also about culture. It's about family. It's about relationships.

Alya Niang

There's a spiritual aspect as well.

Bernard Lapointe

And spirituality. Exactly.

Alya Niang

That's right.

Bernard Lapointe

Canada, like New Zealand, is a place where creative solutions are developing. I'm seeing a flurry of new concepts and new ways of practising medicine. It makes me really hopeful about the future. Yes, there are still a lot of issues. If you're a First Nations member who's homeless in downtown Montréal, for example, you certainly face more difficulties. That doesn't mean we can't make it work. But it's going to take more attention, more care and more funding.

Alya Niang

You could say that patient care should really be holistic. It isn't just physical, but psychological, social and spiritual, as well.

Bernard Lapointe

Yes, that's clear. I think that's why, for me, one of the keys to the solution is what I call “the caring community”: a community that recognizes that it's responsible for the well-being of its people.

Alya Niang

Right. Dr. Lapointe, are the provinces responding to the need to develop palliative care?

Bernard Lapointe

It depends on the province. I think there's a consensus among Canadians. Health Canada is working hard on the issue. The fact remains that there are multiple challenges facing the provinces and health care service organizations in meeting exponentially growing needs, particularly with the aging population. We also need to understand that the better we serve people at the end of their lives, the less it costs the system. If someone is kept at home, it doesn't cost as much as a hospital stay in intensive care. And that's something I think we should always keep in mind.

Alya Niang

Exactly. And, Dr. Lapointe, you've done a lot of work in this area. You've worked with palliative care patients. How do you feel personally about it?

Bernard Lapointe

I think for me, it's just the right thing to do. I've been lucky enough to support some close friends. I was also fortunate to be there for my parents. It's a great privilege. And I know that when my turn comes, I'll be able to count on caregivers who are as dedicated or more dedicated than I am, as knowledgeable or certainly more knowledgeable than I am, and competent, and that I'll have access to these services. I think that's what reassures me, to see that it's becoming. We didn't qualify the performance of the Canadian health care system in terms of the availability and quality of palliative care 15 years ago. Now it's practically one of the basic criteria for assessing the performance and quality of our health care services.

Alya Niang

What are your personal tips for moving things forward based on your experience and thoughts about this report?

Bernard Lapointe

I think we need to broaden the knowledge base of professionals. Knowledge about palliative care shouldn't be reserved for people who want to practise it. We need to ensure that all nurses, doctors, social workers and psychologists in post-secondary education, whether in colleges or universities, learn about it as part of their curriculum. I firmly believe this, and one of my proudest accomplishments is having succeeded in offering it at McGill University's Faculty of Medicine. It's not the only place. I know that in Ottawa and in many other places, there are great courses being taught. So no student is going to finish medical school without knowing about the basic tools. That's essential. The same goes for nurses and social workers. I think that would be my recommendation, because I don't want it to become optional. It needs to be understood as being an essential part of practising the profession.

Alya Niang

I think that's a great recommendation, and a much-needed one, as you say.

Bernard Lapointe

Yes. And we also need to take a good look at our resources. Of course, curing cancer is always more appealing. You see it happening everywhere, I don't know the statistics, but many patients are being cured. A lot more patients are being cured, but I think we also need to raise funds for care when it comes to cancer and other diseases. We don't just treat cancer and other diseases. We care for the people living with a disease. And I think that's important. Hospital administrations are often focused on the potential to raise funds for research and services. It's often less, excuse the term, “sexy” to ask for funds for supportive care, but I think it's essential. That's where public opinion comes in. For example, people listening to this podcast today can influence the decisions made by the administrations they interact with.

Alya Niang

Right. And Dr. Lapointe, to wrap up, what do you think families should do?

Bernard Lapointe

Simply be there, listen and respect the fact that the person going through it is the one going through it. All too often, I've seen children or life partners dictate how a person... They think they know more or they know the patient better than they know themselves. That's always dangerous. I think what I want is for families to listen and respect the patient. And secondly, I want to continue what Health Canada and the Canadian government have been doing, i.e., developing compassionate leave programs. These enable a partner or even a neighbour who's the primary caregiver to be paid for providing end-of-life care for up to 6 months. I think these are great programs, and I think that's what we should aim for, to help people get more support and guidance. I'll finish by saying that caregivers should have access to support resources. The Canadian Virtual Hospice portal has a real-time chat feature and offers support at all hours of the day. It's often at 11 p.m., when the person you're caring for is in bed and asleep, that you have time to chat and get support. I think resources like the Canadian Virtual Hospice portal are part of the solution. And I think it's extremely valuable.

Alya Niang

Philippe, what do you think your mother's experience would have been like without palliative care?

Philippe Miquel

I don't know. I can't even imagine. Because I know she sometimes went to the emergency room at the hospital, and it isn't easy there. You're in a hallway, and the nurses come to see you when they can. Everyone is so busy. You can't really be with your family, and the food isn't very good. It would have been really uncomfortable. I think it would have likely had an impact on my mother's dignity. On the other hand, I believe that palliative care allowed her to preserve her dignity and be in the privacy of her own home. Her friends could see her. We could cook. She could use her own bathroom. It changed everything, really. I think she had palliative care for a total of 3 or 4 months. In the beginning, my mother was fairly independent, so the nurse came once a month. But after Christmas, her condition deteriorated considerably, and she was very ill for the entire month of April. The nurse started to come more often, as did the doctor. And then my mother died on May 3, exactly 15 days ago. And what's interesting is that the nurse phoned me. She said, “I've just checked your mother's vital signs. They're really not good. That usually means the end is near.” Both of my daughters were here. So we got in the car with my life partner, and we went to my mother's house, which wasn't far. And by chance, my 2 other nephews, my nephew and my niece had come, and my brother was there. We were all there with her. We sat around her bed, and they gave her a sedative because she was so agitated. And then we each had just enough time to talk to her and say our goodbyes. Then, maybe half an hour later, she stopped breathing and died.

Alya Niang

She passed away.

Philippe Miquel

In her bedroom. That way, we were all with her. I don't think she could have wished for...

Alya Niang

A better death.

Philippe Miquel

Exactly. It was a really beautiful moment. That's what she wanted, to pass away like that, and that's what we were able to give her. Thanks to home palliative care, we managed to have that. And for all of us to be there. Thanks to the nurse's experience, we were able to be there at the right time, for her last breath.

Alya Niang

That's wonderful. Thank you very much, Philippe, for participating in this podcast, and my sincere condolences for your mother.

Philippe Miquel

Thank you very much.

Alya Niang

Thank you very much for your time, Dr. Lapointe. I appreciate having the chance to discuss such an important and sensitive topic with you. Thanks again.

Bernard Lapointe

It was a pleasure. And thank you to CIHI for its interest in these issues. I look forward to seeing your future reports. Thank you.

Alya Niang

CIHI's palliative care report can be found on our website for a closer look at the data and the implications. Thank you for listening in. Our executive producer is Jonathan Kuehlein. Special thanks to Avis Favaro, the host of our English podcast. To learn more about the Canadian Institute for Health Information, please go to www.cihi.ca. And be sure to subscribe to the CHIP wherever you get your podcasts. I'm Alya Niang. Talk to you next time.