Thank you and good morning.
I thank the committee for the opportunity to appear today and for the unanimous support the bill received at second reading.
I think this bill is timely. Our population is aging and only 30% of Canadians currently have access to any type of palliative care service. The special committee that studied the Carter decision on assisted dying stated that without quality palliative care, a true choice was not possible.
I was surprised to find out that not every location in Canada has the benefits of the integrated palliative care that is offered in my home riding of , where we have more than five palliative care specialists, palliative beds in hospital and in hospice, and an excellent network of home care, counselling, and crisis response services.
I began to ask about this. I found that an all-parliamentary committee in the 2011 session had studied palliative care and brought forward a report with recommendations. Although a motion was made, not much further action occurred.
With an aging population, the implementation of Bill , and the desire to innovate and to get more out of the health care dollars that we invest in our system, we can see that the time is right for this bill,
Bill proposes a framework for palliative care in Canada, including a definition of the services to be covered, a definition of the training required at the different levels of service provision, care for those giving palliative care services, collection of appropriate data, and the development of a plan to get consistent access to palliative care for all Canadians.
During debate, amendments were suggested to add first nations to those covered by this framework and to ensure that the language of the bill reflects the proper balance of provincial and federal jurisdictions. I'm very happy to work with the committee should they choose to adopt these or any other changes.
My theme today will be to explain the sections of the bill and recommend to the committee how I see the framework proceeding.
I'll start with services to be covered.
Palliative care can begin more than a year before end-of-life care, and end-of-life care is defined as the last two weeks of life. Pain control, including the cost of the drugs, along with spiritual and emotional counselling, home care, hospice care, and home crisis intervention are the basic services that I would like to see covered. Today some of these are covered in part, and only in some provinces. Others are not covered at all. It's important to note that the costs associated with palliative care in hospital can be $1,200 a day, versus $400 a day in hospice and $200 a day, on average, in home care.
As compared to intensive care, palliative care in a hospital could save our health system between $7,000 and $8,000 per patient. Recent data suggests that, in Ontario, transferring just 10% of end-of-life patients from intensive care to home care could yield $9 million in savings annually. That is a better use of health care dollars in order to get better results for Canadians.
The second part is with regard to training. Different levels of training are required for the various types of care providers. There is currently a shortage of palliative care specialists in Canada. We have 200, versus a need for at least 600.
General practitioners receive two months of palliative care training as part of their medical degree. Registered nurses may not receive any palliative care training at all, but they should take training as offered today by organizations like Pallium Canada or equivalent.
Home care providers and personal support workers, when trained, would provide a cost-savings delivery model that would be effective, especially in remote regions where innovative solutions to delivering service will be needed. More registered nurses, RPNs, and personal support workers will be needed with our aging demographic. As the provinces are introducing training, it would be wise to set a standard terminology, set the training requirements, and have interprovincial recognition of those standards.
We also need measures to support those who are giving palliative care services. As you can appreciate, watching people die and seeing the emotional and physical agony they are in can bring symptoms similar to PTSD, and there is some need to provide support in the care system for those people, as well as for care providers who may be needing respite and rest. It's important to consider them.
Moreover, the lack of data on the need for palliative care, the total average cost, and the breakdown of services should be addressed by collecting data in order to standardize and monitor the provision of palliative care services.
I encourage you to consult the Minister of Health, who already has some ideas on what she would like to see in this regard.
With respect to research data, there's not really even a baseline of how many people are in need of palliative care or how much palliative care can be expected to cost per person. These are the kinds of numbers we would like to benchmark and monitor.
We also need a plan to develop consistent access for all Canadians. This is one of the most important parts of this framework.
The plan should have several pillars. We've already talked about the trained resources that will be needed. Second, infrastructure will be needed to achieve consistent access for all. There's an opportunity for the government to put money into building hospices and palliative care centres. Canada has about 30 hospices compared to the United States, which has 1,300. Building this infrastructure will create jobs and will address a need.
Finally, in order to service rural and remote communities in Canada, use of innovative ideas will be needed. One such idea is the virtual palliative care centre in Winnipeg, where home care nurses or doctors can call in on a 24-7 basis and get access to palliative care specialists who can guide remote treatment. Web and Skype consults will rely on the government's current infrastructure plan to address Internet in the rural and remote north. Training paramedics, nurses, and home care workers in palliative care and combining this with the fly-in crisis response teams has been shown to work effectively in other parts of Canada, and doing so should be levered as part of the overall plan.
Choosing the mechanism to implement this framework is also important. There are various options. One of them is to add palliative care to the services covered by the Canada Health Act. Another option would be to include palliative care in the new health accord. A final possibility would be to create a government palliative care program to fund the infrastructure, establish training standards, and work with the provinces to implement best practices.
I think any one of these options could work. There are probably other mechanisms I have not thought of, but it is up to the government to provide direction on implementation through the budget.
The $3 billion that is currently promised in the 2016 budget is a good start and I hope to see more in the 2017 budget.
The government should leverage the many national organizations that have supported this bill, each of which has solutions to help deliver the services. These organizations include the Canadian Medical Association, the Canadian Cancer Society, the Canadian Nurses Association, the Canadian Society of Palliative Care Physicians, Pallium Canada, ARPA, the Canadian Hospice Palliative Care Association, and many other member hospices, such as Bruyère Continuing Care, St. Joseph's Hospice, West Island Palliative Care Residence, the Heart and Stroke Foundation, the Kidney Foundation, the ALS Society, and the Canadian Association of Occupational Therapists, as well as the more than 50 member organizations of the Quality End-of-Life Care Coalition of Canada and the many faith organizations across the country, including the Canadian Conference of Catholic Bishops.
In addition, coming up with a standard definition of services to be covered and of the training requirements will be a priority, as provinces are already progressing in their offerings in different ways. Now is the time to act to address this important issue so that Canadians can choose to live as well as they can for as long as they can.
I appreciate your time. I'd be happy to answer any of your questions, and I look forward to our discussion.
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.
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.