Evidence of meeting #44 for Health in the 42nd Parliament, 1st Session. (The original version is on Parliament’s site, as are the minutes.) The winning word was home.
A recording is available from Parliament.
Conservative
Marilyn Gladu Conservative Sarnia—Lambton, ON
Certainly I would like to see that Canadians actually have the choice now that we have assisted dying in place, and there will be money required to spend to get that to happen.
I'm a fan of doing that. As I said, I was not here during the Harper regime, so I can't fix the past. I can only improve the future.
Liberal
The Chair Liberal Bill Casey
Thank you very much for your contribution and presentation, and your motion. I hope we weren't too hard on you.
Conservative
Marilyn Gladu Conservative Sarnia—Lambton, ON
No. This group is great, and I thank you again for the ability to come and testify to you and for your interest. I can tell that you have been looking into this issue and have been studying it, and you're ready to see what we could do together.
Thank you.
Liberal
The Chair Liberal Bill Casey
It sounds like everybody is going in the same direction.
Thanks very much again. We're going to take a little break while we change witnesses. We'll resume in two or three minutes.
Liberal
The Chair Liberal Bill Casey
We'll reconvene now.
We would like to welcome our witness. We had two witnesses for this panel. Dr. David Henderson was scheduled to be here from the Canadian Society of Palliative Care Physicians, but his plane is stuck in Halifax.
We're now going to devote all our time to Dr. José Pereira. He has a very interesting background. He is the co-founder and scientific officer for Pallium Canada. He is also the director of research for the College of Family Physicians of Canada and has many other positions and appointments. He has appointments at the University of Ottawa and at McMaster.
Dr. Pereira, would you take it away and tell us about Pallium? Then we'll ask questions. You have 10 minutes.
Dr. José Pereira Chief Scientific Officer, Pallium Canada
Thank you very much, Mr. Chair and honourable members of the committee. Thank you so much for this opportunity to present today.
I think palliative and end-of-life care are very important to Canadians.
Thank you very much.
Today I'm here to speak on behalf of Pallium Canada and to share with you some personal reflections based on my 22 years as a palliative care physician, researcher, educator, and leader.
I and Pallium Canada recommend acceptance of this draft bill. I wish to share with you the main reasons we endorse this bill, and I'd also like to share with you some additional considerations and recommendations for a pan-Canadian palliative care framework.
I want to start with a story that changed my career completely and has inspired me and hundreds of people across the country to provide palliative care. The story goes back to the early 1990s. I was working as a family physician in a small rural community in southwestern Manitoba. One particular day a patient came to see me. His name was George. He asked me for help. Through that experience I learned the importance of palliative care and how we can make a difference when there is palliative care.
While things have improved much over the last two decades—and I've been privy to that, and I've worked alongside amazing colleagues across the country to do that—there are still significant gaps across the country, and these gaps do need to be addressed. However, there are wonderful centres of excellence, and we need to look at them as role models and try to scale them up and spread them.
George was in his early fifties. He was accompanied by his wife when he first came to see me. He said he had seen other doctors but none had been able to help him. He went on to say that he had advanced cancer and knew that he probably only had a few months to live. However, he was experiencing severe pain and could not spend the rest of his life in such suffering. I vividly remember feeling helpless. I can just imagine how he and his wife were feeling at the time.
Like many other colleagues and peers in those years—and unfortunately, still today—I had not received any palliative care training. He told me he was on a very small dose of morphine, a dose that I found out only later was woefully inadequate. Not knowing any better, I told him I could do nothing because he'd become addicted if I increased his morphine. I was not sure how to deal with the other symptoms and fears he was experiencing.
He got up, took his wife's hand, and started walking out of my office. I'll never forget the next moment, because he stopped, turned around, and said, “I hope that one day doctors like you are able to look after people like me.” I felt embarrassed that I could do no better. George and his wife were devastated.
The experience prompted me to look for some training in palliative care. To be quite honest, in those days I had never even heard the words “palliative care”. I found the course because the subtitle said “Caring for the terminally ill”, but I now know it's not just about caring for the terminally ill; it begins much earlier in the illness.
Palliative care courses for physicians and other health care professionals were very scarce. The only course I could find was in Hamilton, and at the time that course was held only once a year. A few weeks later, I flew to Hamilton to participate, and over the course of five days I came to learn a lot more about palliative care.
Equipped with this new knowledge and skills, I returned to Manitoba and called George. I told him I was sorry, that I had made a mistake, but now I knew better. I'd got some training. He very graciously accepted me to look after him, so I did, and I cared for him until his death a few months later.
This experience taught me several things. I learned that people like George experience many needs that we should be able to address, no matter where in Canada one lives. I learned that with a little training, a health care professional like me can make all the difference. I learned that it is not only patients who suffer but also their families.
I decided to pursue a career as a family physician working in palliative care. A year later, I was accepted into a clinical research fellowship at the University of Alberta to undertake further specialist-level training in palliative care, which I completed in 1995. I've worked in palliative care since then.
George inspired the creation of Pallium Canada in 2001 by his words, “I hope one day doctors and health care professionals like you can look after people like me.”
Pallium Canada is a non-profit pan-Canadian organization whose mission is to educate and support all health care professionals who are not palliative care specialists and other caregivers across Canada to provide a palliative care approach, those basic, essential skills that I learned and was able to apply in the case of George. Over the years, mainly with funding from Health Canada, we've been able to grow and reach out to more health care professionals across the country.
It is estimated that overall only between 15% and 30% of Canadians have access to palliative care services. These numbers vary considerably across the country, and there are regions with much higher numbers. As I said earlier, these are role models that we should try to emulate across the country.
However, those numbers may also reflect an overdependency on specialist-level palliative care services. While there are significant gaps in many such services, gaps that require more palliative care providers and services across many parts of the country—and I can give you examples of how, over the years, I've tried to get more of those resources in place in different provinces—another part of the solution involves making palliative care everyone's business.
There are, for example, tens of thousands of health care professionals who are not specialists in palliative care but who are involved in the care of patients with progressive incurable illnesses. They are at the forefront of diagnosing these illnesses, treating them, and providing care across the illness journeys. They include many professions, from doctors and nurses to pharmacists, social workers, therapists, personal support workers, chaplains, physiotherapists, and occupational therapists, etc., working in areas such as family medicine, primary care, internal medicine, oncology, nephrology, pulmonology, and geriatrics, and I could go on and on. They are committed professionals who want the best for their patients and, in many cases, acknowledge their need to upgrade their skills to be able to provide the care that George received.
There is significant evidence that the lack of palliative care-related training and services results in needless suffering, inappropriate use of health services, and often treatments that hardly provide any benefits. In fact, I can provide examples of treatments that do more harm than good.
Pallium Canada, through our modules and one- or two-day courses called “learning essential approaches to palliative care”, or LEAP, as well as other products such as our pocketbooks and app, is building system capacity to provide palliative care. Our LEAP courses bring together professionals from different professions, disciplines, and settings to learn together, allowing them also to work better together, transition between different settings of care, and help patients transition through those different settings. Our courses cover settings that range from homes and long-term care to outpatient clinics, hospitals, cancer centres, and emergency services. Our community consists of 540 trained and certified facilitators and organizers across the country, and that's our sustainability model. It's not us doing it from a small office in Ottawa; it's a whole community doing it across the country.
We are proud of the return on investment and value added that we have achieved. From 2001 to 2003, over the course of two years, we delivered 47 courses. In this past year, we delivered almost 210 courses across the country, with over 8,000 professionals. We've trained paramedics in Nova Scotia and P.E.I. We've trained nephrology teams all over Ontario. We've trained long-term care facilities with LEAP in British Columbia, Ontario, and other provinces, Nova Scotia included.
While these successes are very encouraging and our model is proving successful, we still have a very long way to go. There are still tens of thousands of health care professionals to be trained. There are still thousands of hospitals, long-term care facilities, family medicine clinics, heart institutes, etc., that need to get their staff trained and oriented toward the palliative care approach, thereby building system capacity.
One of the greatest challenges that I and Pallium have experienced over the years is that funding for the program, while precious and very much appreciated, has generally been piecemeal, temporary, and often not sufficient, given the scope of the challenge and the work at hand. We've had to spend a considerable amount of time and energy searching for sustained funding instead of actually doing the work at hand, at times. With adequate, sustained core funding, Pallium Canada would be able to further mobilize and grow our diverse network of committed palliative care professionals, providers, and volunteers and increase palliative care education in all regions of the country, be they urban, rural, remote, English, or French.
We would be able to spread to other provinces and territories successful programs such as LEAP paramedic, LEAP long-term care, and LEAP renal. We would be able to build upon our earlier work to ensure that the voices and wisdom of aboriginal peoples are included in palliative and end-of-life care education in the country.
This experience of piecemeal and non-sustained funding is a challenge faced by other organizations, not just Pallium, that are making a difference at the front lines of care, organizations such as the Canadian Society of Palliative Care Physicians, the Canadian Virtual Hospice, the Canadian Hospice Palliative Care Association, the Canadian Nurses Association, etc., all of which are trying to make a difference in their spheres of influence.
This brings me to my first recommendation for a Canadian framework: the framework should harness our existing strengths in these organizations and provide us with the capacity to scale up and spread our work by way of sustained and adequate core funding for these initiatives. Opportunities for renewal should be available if there is evidence of success and impact.
My experiences working in education—including co-chairing the education working group for the Secretariat on Palliative and End-of-Life Care from 2003 to 2005; developing a regional palliative care program, the first in Ontario, in the Ottawa area; developing education materials and curricula in universities; and trying to develop programs that are rural and programs that are urban—have brought me to the following recommendations.
The framework should include the development of standards on what constitutes key palliative care services for every region in the country. It should also include standards on how these services should be resourced. I would argue that it is no longer acceptable to have hospitals or community support teams without adequate staffing or resources. It is unacceptable in 2017 to have teaching hospitals such as a large hospital in Windsor without a proper palliative care team, a city such as Hamilton without a palliative care unit, a region such as Brampton without a hospice and with inadequate and inappropriate funding for palliative care physicians and teams. It's inappropriate and inadequate to have rural or urban regions without palliative care support teams to help patients with complex situations. It is no longer acceptable to have little or no palliative care education in the curricula of medical and nursing students and students in other care fields and residents across different specialty areas.
Liberal
The Chair Liberal Bill Casey
I hate to do it, but I have to cut you off.
We want to get to questions, and we're going to start with Dr. Eyolfson.
Liberal
Doug Eyolfson Liberal Charleswood—St. James—Assiniboia—Headingley, MB
Thank you, Dr. Pereira, for coming.
This is a topic that is near and dear to my heart. I am an emergency physician. I practised in Winnipeg for almost 20 years.
One of the challenges in palliative care is in addition to what we've talked about so far, such the lack of services. As you probably know from practising medicine, very often the court of last appeal for a patient in the extreme is the emergency department. One of the challenges we find is with pain control. You know this, practising in Manitoba. Not everyone on the board might know that. You're familiar with the triplicate prescription program.
Liberal
Doug Eyolfson Liberal Charleswood—St. James—Assiniboia—Headingley, MB
Anyone who wants to prescribe a medication stronger than Tylenol 3, such as Percocet or morphine, needs this special triplicate prescription that you apply to have. There are many physicians in primary care, either in walk-in clinics or some family doctors' offices, who are concerned about addiction issues in the community. They've chosen not to have triplicate prescriptions. There are clinics that actually have signs on their door saying, “We do not prescribe narcotics”.
What happens is that some palliative care patients who are on large doses of painkillers run out of them at inconvenient hours. Walk-in clinics are open or their family doctor's offices are open, but they say, “I don't have the triplicate prescription. Go to emergency.”
They might wait eight hours in our waiting room just so that we can write a prescription for Percocet because their doctors refuse to provide this service.
We've talked to our college in Manitoba, and I think other colleges feel the same: that there's no precedent for mandating that everyone in primary care has to be able to provide that service. Would you support mandating in all provinces that if you are providing primary care to patients, you at the very least be able to give adequate analgesia for patients in your care?
Chief Scientific Officer, Pallium Canada
I've heard another question that I think is extremely important, and that is the one about the use of emergency rooms to address palliative care needs. I believe that within systems we can do a much better job further upstream of preventing those sort of visits by being proactive.
I worked for three years as the palliative care lead for Cancer Care Ontario. We found some evidence that if you address symptoms beforehand, manage them, and are proactive in having goals of care discussions and advanced care planning, you actually start to reduce the number of visits to emergency rooms. When you train paramedics, you start reducing them, so I think it's important that there be strategies upstream to prevent those visits.
With respect to the issue of comprehensive care, I also work as research director for the College of Family Physicians of Canada, and we're very proud that we are really promoting the concept, through the “patient medical home”, of comprehensiveness and continuity of care. You will see with time those concepts moving much more to the forefront and becoming integrated as well in the training of family medicine residents. Comprehensive care will become integrated as well in what's expected of family physicians, so I think those sorts of programs need boosting and need encouragement, and it's not just the family physicians: it is all other physicians as well—oncologists, cardiologists, etc., who, with some basic training, can actually be part of the solution.
Liberal
Doug Eyolfson Liberal Charleswood—St. James—Assiniboia—Headingley, MB
Yes, and I couldn't agree more. Thank you.
Again, because these problems come down in the emergency department, we're often left knowing what this patient needs, but it's often hard to find the right thing, and it defaults to calling internal medicine to admit the patient.
You actually touched on the next question I was going to ask. One of the hats I wore during my career was provincial medical director of the land ambulance program for Manitoba. We were starting to make explorations into community-based paramedic care. There's a very good program in Winnipeg whereby paramedics go out and regularly assess high users of the emergency department to prevent emergency department admissions. For other areas that are very underserviced, paramedics can go out into the community and perform certain tasks, such as some home care tasks, immunizations, and medications. In the isolated, northern, and remote areas, do you see a role for an organized community-based paramedic strategy in the care of these patients in palliative care?
Chief Scientific Officer, Pallium Canada
I really believe that we should harness whatever resources we have, and if it is everyone's business, then absolutely, a PSW or a paramedic can play a critical role in helping out. In fact, we're seeing this happening in Nova Scotia and P.E.I., where we went out and developed a LEAP paramedics course. It's a one-day course that trains paramedics. They do some online learning beforehand and then they come together in a classroom.
We're beginning to see some of those early successes in reduced admissions or transfers to the emergency room. Why? Well, it's for two reasons. First of all, the paramedics are now equipped with some of that knowledge and the skill sets, and they are more comfortable addressing a situation, including undertaking some discussions about goals of care and even advanced care planning.
Second, it's part of a whole system. If we also train the emergency staff so that they often phone with the basic essential skills of palliative care, then everyone's talking the same language and everyone's on the same page, and you start seeing things changing. Instead of saying, “Bring the patient over”, it becomes, “Okay, let's look at this. What's the situation? Let's try to care for the person at home and let's put in resources that are available in the home.”
Liberal
Doug Eyolfson Liberal Charleswood—St. James—Assiniboia—Headingley, MB
Thank you very much. I have so much more to ask, but I think I only have about 15 seconds left, so thank you very much for coming.
Conservative
Rachael Thomas Conservative Lethbridge, AB
Thank you very much.
Thank you, José, for taking time to be here with us today. We certainly appreciate your comments.
I am going to split my time with my colleague over here, Mr. Webber, so I'm going to try to be quick.
You said that we often think of palliative care being necessary at a specialist level—that was your term—but you said this isn't always the case, that perhaps we should think beyond this idea. I'm wondering if you could expand on that thought for me.
Chief Scientific Officer, Pallium Canada
Sure.
It is well known that in any health care system we need a strong primary level base, and then a secondary and a tertiary level of care. The tertiary is the highly specialized care that a much smaller proportion of the population requires. You see that in the care of patients with hypertension, for example. Not all patients with hypertension need to go to a cardiologist; a lot of it can be really well controlled at a primary level.
It's the same thing for palliative care. If we provide what I say are the “generalists” with those basic competencies from a palliative care perspective—how to assess symptoms; how to start managing them; how to ask about the understanding of the illness; what the psychological, social, or spiritual needs are; and how one can help—then we start implementing that palliative care approach.
If we start equipping those professionals who are not palliative care specialists with those basic skill sets, they can start initiating a palliative care approach much earlier, which means the much smaller group of specialists can then focus on doing certain things, such as caring for patients and families with complex needs; leading education; leading quality improvement in hospitals, in long-term care, and at home to improve palliative care; and doing research.
Unfortunately, at the moment, in some provinces that triangle with primary care is upside down. Ontario is an example. In a study I published with some colleagues about a year and a half ago, we discovered that most of the palliative care, including primary level palliative care, was being done by a very small group of palliative care specialists. There are only about 260 palliative care specialists in this province to do all the care for cancer patients, heart patients, nephrology patients, and geriatric patients, etc.
First of all, there is a significant lack of those specialists' services in many parts of the country. We need them. Second, there are problems with funding mechanisms. In Ontario, for example, much of the funding of palliative care specialists is by a fee-for-service model, so it drives the specialists to take over palliative care, to do the clinical work only, but it doesn't pay the specialist to teach and build capacity. That needs to be changed to models using existing funding that can build capacity, rather than undermining that primary level that is so critical.
Conservative
Rachael Thomas Conservative Lethbridge, AB
Thank you very much.
Bill C-14 came into effect in June. Of course, it allows for medical assistance in dying, but it doesn't protect a person's choice of palliative care when only 15% to 30% of Canadians have access. Can you comment on how this bill will take care of people's right to choose?
Chief Scientific Officer, Pallium Canada
I can spend the rest of the day providing examples of cases of a palliative care intervention saving someone from saying they wanted to end their life earlier.
I worked for a few years in Switzerland, and one particular case comes to mind. A young man with advanced lung cancer came into the hospital in Lausanne saying that he couldn't live like this, that he wanted to end his life, and that he had the right of access to assisted suicide. We got the palliative team involved, controlled all his symptoms, and a few days later he went home again. He published a story in the newspaper saying that it helped him, because he could now spend quality time with his family.
I totally agree with your saying that if there is no palliative care, then there isn't any choice. Palliative care does make a difference for the overwhelming majority of people.
Conservative
Conservative
Colin Carrie Conservative Oshawa, ON
Mr. Webber said I could ask one really quick question, so I know I don't have a lot of time.
First, Dr. Pereira, I want to thank you for your compassion and commitment, because this is something Canadians are going to be dealing with. I think we're at a crossroads here, so it's a very timely bill and it's very timely for you to be here.
I know Bill C-14 concerned a lot of Canadians, and my colleague brought up the question about choice. Just so that moving forward we're doing the right thing, could you outline some of the current barriers to accessing palliative care services that Canadians face?
Chief Scientific Officer, Pallium Canada
I think there are many barriers, but let's not forget as well the examples of excellence across the country where they are able to overcome those barriers. We are known across the world as innovators. The problem is that we innovate a lot of pilot projects, and we need to scale them up.
In terms of barriers, there are numerous barriers. One of them, though, and an important one, and almost the elephant in the room, is a culture that refuses to talk about end-of-life care issues, a culture that unfortunately equates palliative care only with death and dying and does not see it as about living and improving quality of life, and a culture as well that is overreliant on the health care sector to come up with solutions. I firmly believe that it's time we started looking at other sectors, such as education, the financial sector, and social services. Can you imagine, for example, if our children, finishing K-to-12 school, ready to go into the world, are equipped with those life skills that allow them to have frank discussions about this, to talk about advance care planning, and importantly, to be able to care for their grandparents—even perhaps their parents, perhaps even friends, as my children have experienced—and able to have those skills to sit at the bedside of someone who's frail and elderly and listen to their stories and hear from them? We'd start getting this cultural shift occurring.
Imagine if companies were able to have programs in place so that they were aware that a staff member or family member had an advanced progressive disease and were able to put measures in place to help them out. I think there's a lot we can do as well from a non-health care sector.
If we look at the health care sector, there are a lot of resources we already have. It's a matter of reformulating and readjusting them. I gave the example earlier of the fee for service. If the ministries in those provinces, including Ontario, were to say, “Okay, we're already paying these doctors; let's pay them in a different way that helps them build capacity”, I think we might start seeing more capacity being built.
Liberal