Proceedings of the Standing Senate Committee on
Social Affairs, Science and Technology
Issue No. 30 - Evidence - October 18, 2017
OTTAWA, Wednesday, October 18, 2017
The Standing Senate Committee on Social Affairs, Science and Technology, to which was referred Bill C-277, An Act providing for the development of a framework on palliative care in Canada, met this day at 4:16 p.m. to give consideration to the bill.
Senator Kelvin Kenneth Ogilvie (Chair) in the chair.
[Translation]
The Chair: Welcome to the Standing Senate Committee on Social Affairs, Science and Technology.
[English]
I am Kelvin Ogilvie from Nova Scotia, chair of the committee. I will invite my colleagues to introduce themselves.
Senator Eggleton: Art Eggleton, senator from Toronto, deputy chair of the committee.
Senator Omidvar: I’m Ratna Omidvar from Ontario.
Senator Dean: Tony Dean, Ontario.
[Translation]
Senator Petitclerc: Senator Chantal Petitclerc from Quebec.
Senator Cormier: Senator René Cormier from New Brunswick.
[English]
Senator Stewart Olsen: Carolyn Stewart Olsen, New Brunswick.
Senator Seidman: Judith Seidman, Montreal, Quebec.
[Translation]
Senator Dagenais: Senator Jean-Guy Dagenais from the Montreal region, in Quebec.
[English]
The Chair: Thank you, colleagues. I remind us now that we are here today to deal with Bill C-277, An Act providing for the development of a framework on palliative care in Canada.
This bill was introduced on May 30, 2016, by Marilyn Gladu, MP, in the House of Commons, and the bill passed in the House of Commons and referred to the Senate on May 30, 2017.
On September 26, 2017, the bill was referred to the Standing Senate Committee on Social Affairs, Science and Technology for study. Today we will hold our first meeting on this bill, and I am delighted to welcome Marilyn Gladu, Member of Parliament for Sarnia–Lambton, sponsor of the bill, to our committee to present to us.
[Translation]
Marilyn Gladu, Member of Parliament for Sarnia—Lambton, sponsor of the bill: Thank you very much. I am pleased to appear before the committee today.
[English]
I am so happy, senators, to be able to talk about this bill, which I think is coming at the right time. I will tell you a little bit about how the bill came forward, describe what’s in the bill and then open it up for your questions.
It was at the time that the assisted dying legislation was coming through Parliament, and the special committee that studied the assisted dying legislation made recommendations that, without good-quality palliative care, it was not possible to make a true choice. At that point, I turned to my seatmate, who was Mark Warawa, Langley, B.C., and I said, “Well, it’s a good thing we have good palliative care in Canada.” And he said, “What do you mean?” And I said, “Well, in my riding of Sarnia–Lambton, we have five or six palliative care specialists, we have 20 palliative care beds and fully integrated home care,” and he said, “70 per cent of Canadians don’t have any access to palliative care.” I was astounded. I said, “Well, has this never been raised in Parliament?” And he said, “There was an all-party parliamentary committee in 2011 that brought forward a report and recommendations that went to a motion but really went nowhere with action.” With that, this is why I brought the bill forward, with the intent to get consistent access to palliative care for all Canadians.
Now, the bill itself recognizes that there are jurisdictions for the federal government and jurisdictions for the province. The federal government can play a role in leadership, in setting standards, in providing funding and in helping to leverage the best practices and innovations that will come.
The first part of the bill is to define what palliative care is. Palliative care is so many different types of services. Pain control is only one. It also comprises crisis intervention and the spiritual and emotional counselling that people require as they go through the experience and all the levels of care. Determining what will be covered will be critical and, from there, looking at the palliative care training and education needs of all of the people who are giving palliative care.
Today in Canada, we have about 200 palliative care specialists, and the need is apparently for about 600. We have an aging population, as you know: one in six in Canada today is a senior, and that will be about 1 in 4 in just a few years. We need to get more people trained, but it’s not just the specialists. At the general practitioner level, in some cases they don’t even get two months of palliative care training, and nurses are graduating with no palliative care training. Home care and hospice workers sometimes don’t have the level of training they need, and in rural and remote communities many times it is family members that are giving the palliative care. There is an opportunity to provide that training and set some standards in that area.
The third part identifies measures to support the palliative care providers. When you’re at the end of life, it’s a hugely emotionally draining experience for everyone involved — the family, the person impacted and the caregivers themselves — so we need to make sure that their mental and physical health is maintained.
Then we need to have some benchmarking on palliative care. Today, we’re not really sure exactly how many Canadians need palliative care. We don’t know how much it really costs on the average, and we haven’t done a lot of comparisons of the different technologies to see which ones would be more beneficial or cost-efficient. There is an opportunity to do research and to collect data so that we can measure the improvement as we go forward.
Part E identifies measures to facilitate a consistent access to palliative care across Canada. In my view, this is probably the most important part of the bill because this is how we get palliative care delivered for all Canadians. Within this, the plan will have to contain a number of measures.
It will have to address the resource gaps we talked about in terms of palliative care specialists, but also it will have to address some infrastructure concerns. Today, there are fewer than 90 hospices in Canada versus about 1,300 in the U.S., so there is an opportunity to build hospices. The advantage there is a cost advantage. If we deliver palliative care in hospitals, an acute bed typically costs $1,200 a day. Think of that compared to hospice care, which is about $300 a day, or home care which is $200 a day. And in some of the innovative models they are using currently in Nova Scotia, they have paramedics delivering some of the pain control for about $90 a day. There is a huge opportunity to get better health care efficiency, and that will be especially important with an aging population.
Then, in order to take advantage of some of the innovations that exist, in some places they have 24/7 palliative care centres where there are multiple palliative care specialists, and remote locations can call or dial in to get the guidance they need for the palliative care interventions that they’re doing. In order have that access work, you need to have rural high-speed Internet in remote places, so that is another infrastructure piece the government is already working on.
The next part says we should take into consideration existing palliative care frameworks. The federal government had funded a quality coalition to come and development a framework on palliative care several years ago. This is available as a starting point so the government doesn’t need to begin with a blank page; they can go from there and add or subtract as needed to begin quickly to get this plan in place.
Finally, there is a call to evaluate the advisability of re-establishing Health Canada’s Secretariat on Palliative and End-of-Life Care. The idea here was to have a focal point that could drive this plan. We’re behind the eight-ball already and need to get this in place. If you had a person, especially someone expert in the area of palliative care, it would be great to have them drive this program forward to get that consistent access for all Canadians.
I was pleased when this went to committee and that when it went back to the House of Commons it received unanimous support there. My hope today is that you would recognize that this is the time, and when people have good quality palliative care, 95 per cent of them will choose to live as well as they can for as long as they can, and that’s what I would hope for all Canadians.
With that, I will finish and take questions.
The Chair: Thank you very much. Colleagues, there is a great deal of interest from all of you in this bill so we will use the one-question-per-round approach in the hope that everyone gets at least one question in. We will start with the critics, of which there is a flotilla now in the situation. All the other terms have been used for other flocks.
Senator Eaton: I congratulate you on the bill. It’s very exciting. One thing I’d like you to comment on is that when your original bill was before the house, it included the phrase “implement a palliative care framework.” The house changed it to “support a palliative care framework.” What long-term effects do you think that will have? Do you think that change weakened it considerably in terms of pushing it to get done?
Ms. Gladu: I don’t believe it weakened it, because the provinces actually have the jurisdiction to implement, so the federal government’s role, then, is one of a support role. They support by applying funds, by setting standards, by leveraging things across the provinces and by getting the provinces together to have the conversations of sharing, so it was a jurisdictional clarification that they were looking for there.
Senator Cordy: Thank you very much, Ms. Gladu, for the work that you have done on palliative care, because you’re absolutely right: Seventy per cent of Canadians don’t have access, particularly in small communities, isolated communities in the North and indigenous communities, so thank you so much for raising this issue once again. It’s extremely important.
Thanks to Senator Eaton who has also spoken many times in our chamber about palliative care.
The bill requires that a consultation process evaluate the advisability of re-establishing the Secretariat on Palliative and End-of-Life Care. In June of 2001, the Secretariat on Palliative and End-of-Life Care was established within Health Canada with an annual budget of between $1 million and $1.5 million, and former Senator Carstairs was actually the minister responsible for palliative care. By having a secretariat and having a minister responsible, things moved ahead considerably and, in fact, it was during that time period where medical schools started training doctors in palliative care.
Unfortunately, despite the great strides, this strategy, the secretariat and the ministership ended in 2007 under the previous government. If there’s not a secretariat, then what mechanism should be put in place to be sure that the efforts are coordinated?
The special joint committee that you referred to earlier on physician-assisted dying recommended that Health Canada re-establish the Secretariat on Palliative and End-of-life Care. Why are you saying that we should evaluate the advisability of it and why aren’t you just saying we need a secretariat?
Ms. Gladu: Well, this amendment was an amendment brought by the NDP, and the government of the day didn’t want to just add that we were going to put that in the bill because then there is a cost associated that requires Royal Assent. The idea was to evaluate the advisability, and it doesn’t cost anything to think about it. Once they decide if they want to do it, I think they would agree that would move things forward quickly. Otherwise, the health minister, in conjunction with Health Canada, would be in charge of this and, with the opioid crisis, the suicide crisis, the marijuana legislation and all the other things going on, I think that palliative care could get lost in the shuffle, and that would be a shame.
Senator Cordy: I wondered if it was the financial end of it when I was reading it. My preference would be that it be established quickly.
Ms. Gladu: The will of the committee was that you would have a focal point, and there was some discussion afterward about whom the individual might be, because there are a lot of talented people in Canada that might be very good for that role.
Senator Petitclerc: Thank you for the important work that you have done and are still doing on this bill.
I would like you to reassure me that this bill will cover something that I did not see specifically in the bill, and which I think is very important: pediatric palliative care. From my reading, there are different sets of needs and research and maybe support for families when it comes to pediatrics and palliative care, and often it is not addressed as well as it should be. I want you to tell me how you feel this will be addressed and how confident you are that it will be addressed.
Ms. Gladu: The discussion that we had in the bill was about making sure we had consistent access for all Canadians. Included in the “all Canadians” is, of course, indigenous people, people from the provinces and territories of all ages. If we look at hospices across Canada, we see an increasing number of children getting palliative care through the hospice mechanism. They are intended to be included, and I believe that if we put the infrastructure in place that we’re talking about in terms of hospices — you can see the scope in the opening part of the bill covers everything from hospitals, home care, long-term care, residential hospices — then they will be included in that totality.
Senator Eggleton: Thank you and congratulations. This is a lovely piece of work.
One of the first points you make is a need to define what palliative care is. Is there not a consensus already on what palliative care is?
Ms. Gladu: In the palliative care field, physicians across the provinces have agreed with what ought to be covered. The problem is the government has not agreed to cover them. In some provinces, 43 per cent of palliative care in hospice is covered; in other provinces, not at all. In hospital, palliative care is covered but at quite a large expense, and then home care is variable as well across the country. Many home care organizations, like the Victorian Order of Nurses that deliver palliative care, rely on fundraising. The question is defining what palliative care is to the government that will take out their chequebook and put money on the table.
Senator Seidman: Thank you very much, MP Gladu, for appearing before our committee. I want to offer my sincere appreciation for your tireless work on this file and extend my congratulations for the broad support that you have received from all sides.
I was privileged to sit on the Special Joint Committee on Physician-Assisted Dying along with fellow senators and colleagues from the other place. Indeed, all witnesses addressed this issue and agreed that Canada could and should do more to improve access to palliative care. I know we all understand how important this is.
I would like to ask you very specifically: You have in this bill consultations and a report to Parliament with a six-month to one-year period of time. What were you hoping to achieve with that particular request?
Ms. Gladu: The whole point of this legislation was to drive action on the part of the government. Originally, in Budget 2016, the government had announced $3 billion for home and palliative care, but those words didn’t appear in the budget. In 2017, I’m happy to say, by working with Minister Philpott at the time, that $11 billion was put in the budget for home care, palliative care and mental health care. So even in advance of the legislation, action is being taken.
But we wanted to make sure things didn’t drag on, so within six months, consultations with the provinces to agree what services should be covered and then within a year to come up with a framework. That doesn’t need to take a year because the Quality End-of-Life Care Coalition, of course, with the federal funding has already got a document that is well supported by the palliative care physicians of Canada, Pallium Canada and a number of the stakeholders that are involved.
I would suggest that the government, if they had a will, could very quickly get a framework in place across the country. They are having meetings with the provinces. They tend to work collaboratively that way. I think the next meeting doesn’t need to take six months.
[Translation]
Senator Cormier: Thank you very much for your work. I am from New Brunswick, a province where the aging population poses the greatest problem right now.
You talked a bit about the possible secretariat. I’d like you to elaborate on that. What I’m concerned about is the relationship between such a secretariat and the provinces. How would that relationship be set up to make sure that the care provided in every region reflects that region’s cultural and spiritual realities?
[English]
Ms. Gladu: Basically, how this would work is the secretariat would report to the Minister of Health federally. This secretariat then would be the one who would be meeting with the provinces to get agreement on how they will leverage best practices or if there is a standardization of terms and those kinds of discussions. It’s really to get a devoted, full-time person. It is not intended to replace the provincial authority that is in place.
[Translation]
Senator Dagenais: I’m not normally on this committee, but I do have a question for you. You may find it a bit political. At a time when the government is preparing to legalize marijuana, why did the Standing Committee on Health remove the language “give Canadians access to palliative care,” which very clearly and appropriately described the goal of the framework? The committee replaced it with “support improved access for Canadians to palliative care,” which denotes less of a commitment. What led to the change in language?
[English]
Ms. Gladu: You’re going to get access to palliative care. You will define which things are covered. Specifically from a marijuana point of view, I will tell you that palliative physicians today are using medical marijuana to address pain control in some patients, so that would probably be part of the discussion the government would have on what would be covered.
[Translation]
Senator Mégie: Thank you for efforts to get this bill passed.
I heard my colleague say that the language “support improved access for Canadians to palliative care” was a bit weaker than what had been there previously. I find that unfortunate.
My second comment has to do with what Senator Petitclerc said to you earlier about pediatric palliative care. Oftentimes, when we talk about palliative care, people tend to think only in terms of adult palliative care, and in fact, all of the hospices set up by non-profit organizations are for those 18 years of age and older. Facilities for children are strictly for children. The reason is simple: they have specific needs. They are not just palliative. These children look fine today and are already on death’s door tomorrow, so their situation is somewhat different from that of adults.
I would suggest specifying the word “pediatric,” so that the regions with the resources to do so — or depending on how the government decides to organize the funding — know that facilities for adults and facilities for children will be funded. That would provide greater clarity, given that when we refer to palliative care in general, everyone thinks in terms of adults.
[English]
Ms. Gladu: I think we can look at some of the better models. I visited several hospices across the country to see what people were doing, and there are a couple of really great models. In Montreal, there is one, and also one in my riding, where they are so integrated with the hospital and they don’t separate the pediatric palliative care from the palliative care, but the pediatricians do come in and there’s a team assigned. I would say that my hope is that we would have that kind of integrated service because I think it gives better service than a siloed approach.
As far as providing access, this was another discussion. There was a lot of concern on the part of the government to make sure that, jurisdictionally, they didn’t step on what is considered to be a provincial responsibility, and the provinces have strong feelings about that, as you know. Providing access implies they do what the federal government does, which is pay, so that all the people can take advantage of it. The difficulty, if we amend the bill at this stage, is it has to go back for another round in the House of Commons. One would hope it would receive unanimous support again, but politics being what they are, we can never be sure of that. We know as well that the timing on that will cause a delay, and I think it’s an urgent need. The intent is there and there is enough flexibility to achieve what you are looking for, which is a good thing.
Senator Stewart Olsen: Thank you for being here. In my province of New Brunswick, palliative care is very difficult to access. We have very few centres, mostly in small hospitals. The hospitals put together their palliative care unit. You have a hospice in Fredericton, and then you have home care. My concern is that the three are functioning as you said, in silos, and there’s not an overall umbrella to provide the direction that they would all need. I’m wondering how you might see that we could approach that and perhaps help the provinces find a way through.
Ms. Gladu: I think it’s an excellent question. When it comes to the discussions that will go on with the provinces to develop the plan to get the consistent access, that’s where there has to be an analysis of what’s in place in the provinces today. What do you have in terms of hospice and home care? How is it working? And then agree on which model is the efficient one. The integrated one is the one I favour, but I defer to the Minister of Health to choose the one that works for the government. Then you have to fill the gaps.
That’s going to be a multi-year plan because of the amount of money needed to get the infrastructure and address the needs of all the people in Canada that are currently under-served, and it is something that will have to be paced.
Senator Omidvar: Thank you for your work on this. It is much appreciated. We did have a lot of conversations about palliative care when we were debating assisted dying, so I’m glad we’re coming at it with this bill.
I wanted to ask you whether your research had extended to best practices in other jurisdictions that share the jurisdictional sharing of responsibility. So much of what you have in the bill is framework legislation. The real work gets done by the provinces. I wonder if your research led you to this framework legislation, or is there something out there we should be aspiring to look at?
Ms. Gladu: As I began to have stakeholders jumping on board with this bill, the Canadian Society of Palliative Physicians was one of the groups that came along. They opened up information on what’s happening in the world in terms of the World Health Organization, their approach to palliative care and some of the best practices that have been implemented, like this virtual palliative care centre that has been leveraged over to Canada. This is a great way of learning lessons from those that have gone before and picking the things that are good and will fit into our framework.
Senator Eaton: I feel spoiled; I’m getting a second question. You mentioned earlier that the minister had allocated $11 billion for home care, palliative care, in the last budget. How will you know how it will be distributed and what will be directed to palliative care? Dr. Philpott has begun to consult with the provinces, but she’s no longer Minister of Health. There is a new minister, so I guess the consultations start over again. Do you have any idea how she will negotiate with the various provinces, and do they see a figure out of the $11 billion?
Ms. Gladu: The division originally was $3 billion for home care, $3 billion for palliative care and $5 billion for mental health care, but that was the granularity level that existed. Beyond that, I haven’t seen any actual plan. My hope was to arrive with this legislation and an opportunity to take up that whole $3 billion of the palliative care money right away and get started.
The Chair: Good planning.
Senator Cordy: I think it’s great planning.
It was interesting to see your numbers, $1,200 a day in hospital for palliative care, and for home care, $290 a day in Nova Scotia. I’m from Nova Scotia and we have established a palliative care commission with extremely capable people on it, so that’s probably an indication of what it is. But many people don’t understand that if it’s at home, they’re paying for it unless they have private health care, as opposed to when they’re in the hospital. I think that’s the kind of dynamic that has to change, but that wasn’t my question.
Within the bill, it talks about training and education for health care providers and care givers, but it doesn’t talk about education of the general public. The general public doesn’t always understand what’s available to them if they are going to make personal long-term arrangements for themselves and what they want to happen, particularly if they have a disease. Was there any consideration when you were doing the bill that you would have education for the general public as to what palliative care is, what it could provide for individuals and that it could be in the hospital or in the home or hospice, if that’s available?
Ms. Gladu: The discussions were held. It’s a logical progression but, in order to educate people about what palliative care is, the federal government has to decide what they’re going to say it is. It’s hard to educate people on what it is when the service is not available to them, so the idea is to begin the progression of getting those services in place, and then I think that would be a natural next step.
[Translation]
Senator Petitclerc: You touched on this, but I am curious to hear your observations and to find out whether you had any discussions with the provinces about the implementation of the strategy. Is there a preferred model for each of the provinces, or, conversely, will the model be adapted to what the provinces are already doing? Or is it a combination? This strikes me as being quite a complex initiative, so I’d like to know how you envision it.
[English]
Ms. Gladu: The reason this is timely is that the provinces are already marching ahead and implementing some plans. Quebec, Ontario and B.C. are three that are really marching quickly, and Nova Scotia has some pockets of excellence.
From the Canadian Society of Palliative Care Physicians, Dr. David Henderson has developed a model in conjunction with all of the provinces where they putting together their data about what they know — — and it’s piecemeal — to try and get a picture of how much palliative care service we need in Canada and what kind of resources we need in each area to be able to model that.
That’s the kind of initiative we’re going to need. If the federal government waits too long, the provinces will all have something different in place with different standards, and then it becomes difficult to leverage and it’s less efficient.
Senator Eggleton: You quite properly point out that there needs to be consultation between the federal and provincial ministers and provincial and territorial governments on these provisions. There are some parts of the population that the federal government has direct responsibility for. How do you envision this would apply to those people, particularly indigenous and veterans, and how would that be different from what it is now? I’m not sure what degree they’re getting now, so perhaps you can indicate what degree of support they are already getting.
Ms. Gladu: I would say things are even more dismal within the indigenous communities in Canada because many of them are remote, want to remain at home and don’t have access to funding to get home care. I think it’s a dire problem. It’s definitely included.
The discussions we had with the health minister were before they separated into the separate ministries. I’m not sure that that will have an impact on this bill — this bill is holistic — but it may mean that this will be under the bucket of Minister Philpott, who now has responsibility for indigenous health. If there’s that secretariat of palliative care that’s driving the whole thing, then I would imagine he would be working with her and with the Minister of Health to make sure there’s progress on both.
Senator Omidvar: Ms. Gladu, you referenced the different speeds and efforts at the provincial level. On the one hand, I think that provincial variation leads to provincial innovation; there’s risk-taking and some kind of healthy competition. On the other hand, you run the risk of access to palliative care being determined solely based on where you live and maybe you go shopping. Maybe you say, “Okay, I want to end my life in British Columbia after three months, et cetera. I’ll go there because the access is better there.” Will your framework legislation address some of these variations in service delivery and access?
Ms. Gladu: Yes. The bill will certainly set the minimum standard of the services that will be available everywhere. Within that, there will still likely be room for innovation. I look at some of the examples, and I mentioned paramedics doing pain control on their off time in Nova Scotia in a cost-efficient way. There are other teams doing crisis fly-ins to remote locations. When we look at these things, they’re such good practices that we should be sharing them across the provinces and they should be taking advantage of them because it’s a benefit to them in terms of the efficiency of their health dollar spend.
The Chair: This has been an excellent discussion. I want to join my colleagues in commending you for bringing the bill forward.
We have studied a number of issues in which palliative care has emerged as part of that and certainly, as has been pointed out, the medical assistance in dying. It is clear that one of the problems we have in Canada is sharing best practices across the jurisdictions, and without some sort of organization to bring about collaboration in the area, it just doesn’t happen. Even the Canadian Public Health Service doesn’t have portals dedicated to best practices in issues across the country. I think your bill is extremely important in terms of bringing about that dialogue across these various jurisdictions to deal with the many issues raised here. If Canadians as a whole are going to benefit from the excellence that occurs in one location, we have to be aware of it across jurisdictions. Indeed, by having the provinces, the federal government and the various important identified communities working together, hopefully that dialogue will lead to identification of the major barriers to delivery and availability of care in this area, but just as important, the identification of the very best practices to provide under the different circumstances, and you have listed a number of those for us today.
On behalf of the committee, thank you very much.
Ms. Gladu: Thank you, senators.
Ms. Baxter, I’m just going to go over a couple of things with you. The way we will operate is that I will invite you to present first. I always have the video conferencee present first, just in case the marvels of modern technology don’t continue throughout. Then I will invite our witnesses in the room to present, and then I will open it up to questions.
Now, colleagues, we do have someone by video conference, so I am going to ask you, when we get to questions, that you direct your question, that you don’t just lob it out there. Identify who you would like to respond first. Then I will always give the other witnesses a chance to respond as well.
With that, Ms. Baxter, if you don’t have any questions before we proceed, I am going to invite Ms. Sharon Baxter, who is Executive Director of the Canadian Hospice Palliative Care Association, to present to us first.
Sharon Baxter, Executive Director, Canadian Hospice Palliative Care Association: Welcome everybody, and thanks for having me on this call. It’s unfortunate that I couldn’t be in Ottawa today. I’m at national cancer palliative care meetings in St. John’s, Newfoundland, so I’m calling in remotely.
We clearly support Bill C-277. The Canadian Hospice Palliative Care Association, as the national association providing leadership in hospice palliative care, would like to thank you for considering Bill C-277 and for holding these presentations. We’re quite excited about this, and I think it’s an important issue for all Canadians. We are truly encouraged by the attention paid in the last year to this pressing issue of palliative care in both the upper and lower houses of Parliament. We are pleased that there is a desire to develop and implement a strategy — we’re calling it a strategy, not a framework, because there are a number of other frameworks going on in palliative care right now, so, just for ease, we’re calling it a strategy but you’ll call it what it is called in the bill — that will guarantee all Canadians access to high-quality palliative care.
The provision of specialist hospice palliative care and acute care in hospitals and residential hospices and the palliative approach to care provided in the community are important issues for Canadians, and they need to receive the attention, the funding and the support to be able to handle Canada’s aging population.
Now, if I may, I’d like to highlight some existing information and resources that will help with the development and implementation of this palliative care strategy, some of which is noted in the bill’s current iteration, as well as some suggestions for some minor adjustments.
As the secretariat for the 39-member Quality End-of-Life Care Coalition, CHPCA regularly facilitates exchanges around hospice palliative care. The QELCC, as we often call it, produced a guiding document called the “Blueprint for Action.” I know a number of you have seen the action plan. It’s from 2010 to 2020. In it, we identified four areas of action, and I think the bill outlines some of them fairly well. Recommendation one was all about ensuring access, including access to high-quality palliative care and a palliative approach to care. Recommendation two was all about providing some support to family caregivers, including bereavement support. Recommendation three was about funding research, training and education, and recommendation four was all about encouraging Canadians to discuss their wishes, which we often refer to as advanced care planning. All are taken into some consideration in the bill. A lot of this can be worked out once the bill is in place, if that so happens.
Between 2012 and 2015, the Government of Canada provided funding to CHPCA, my association, for a three-year initiative called The Way Forward. It was around an integrated palliative approach to care. This culminated in the development of a national framework and the dissemination of practical tools and resources to help governments, policymakers, regional planners, health service organizations and health-care providers to adopt a palliative approach to care. But it ended two years ago, and there hasn’t been much movement since then, so it’s good to see it having some legs going forward.
This framework is particularly important to help with palliative care in rural and remote settings and across cultural communities, including our indigenous peoples as well as marginalized and at-risk populations. We don’t do a very good job with some of these populations. We need to do much better.
The Way Forward was intended to be a catalyst for action by raising awareness and understanding of this palliative approach to care. It’s sort of a new way of thinking for us. While about 35 per cent of Canadians require a specialist palliative care approach, often those with cancer and those with a definite dying experience, the vast majority of Canadians, 65 per cent, do not require this level of care, and that’s why we started this project.
The Way Forward initiative also defined the terms “hospice palliative care,” a “palliative approach to care” and “advanced care planning,” and these are included at the end of the brief that we submitted to you. As you continue to study Bill C-277, please keep in mind that we have good definitions, and they already exist, looking at palliative care across various settings of care. This does not necessarily need to be integrated into the bill.
More recently, CHPCA undertook an environmental scan of all of provinces and territories, as well as the Quality End-of-Life Care Coalition members, to see where they stood on the implementation of a palliative approach to care. I know Dr. Pereira is going to speak in more depth about a palliative approach to care after me, so I won’t go into too much depth on that. Given that health is a provincial and territorial responsibility, we thought it was really important that we actually tested the waters on where the provinces and territories were. They came up with a number of recommendations. One is that, while public awareness is one driver of the adoption of a palliative approach, there is more that we can do to enhance the understanding of a palliative approach to care and advanced care planning with both the public and health-care providers.
A national education curriculum and ongoing professional development, through enhanced skills and training, is important. Conversations about a palliative approach need to be better integrated into usual medical care, looking at health-care providers that don’t necessarily work in hospice palliative care so that there is a broader awareness.
Ongoing advocacy efforts for a palliative approach to care must continue, particularly in light of the MAiD legislation. We need to clarify what hospice palliative care is and to provide that. It’s one of those things that I think has been muddied in Canadians’ minds as to exactly what their end-of-life experiences could be.
Current care pathways need to include a palliative approach, and tools and materials need to be developed with the professional associations and in training in the schools.
Finally, we found that we must ensure that resources are available to dedicate to hospice palliative care and flexible to meet the diverse health-care needs of Canadians. We need to take into consideration those Canadians who are poorly served by our health-care system right now, which is our indigenous peoples and cultural and vulnerable groups. Bill C-277 is a positive step. I wanted to reinforce the idea that the health-care associations and organizations are all partners in this.
CHPCA and its provincial palliative care associations would strongly support the inclusion of language in the final iteration of Bill C-277 that recognizes the role that community must play in the successful development and implementation of a palliative care strategy. The majority of funding for residential hospices — this is just one setting of care — is delivered in the community and must be raised by the community that it’s located in. It’s a good model, but it requires a lot of work and a lot of buy-in from those communities to fund these programs. We feel that the community needs to be an equal and valued partner in the strategy being developed, and we often refer to it as an FPTC, or a federal-provincial-territorial and community response.
Even corporate Canada has a role to play. CHPCA’s Champion’s Council, made up of leaders in industry, launched a program called Canadian Compassionate Companies in November 2016, and we have recognized five national companies that are going beyond the call of duty to support their caregivers in the workforce. I think there is a role for us all to come together in this new vision.
In summary, studies and reports have been done, and the ample evidence clearly points to one course of action: that we should support and fund the agreed-upon priorities to make hospice palliative care accessible to all Canadians. We need to look at Bill C-277 as a good first step towards this reality. With the development of an administratively lean, action-oriented, evidence-based national palliative care strategy, major progress can be made. We have made progress in the last 10 years, and we’re at a unique time in history when we can take a leap forward.
CHPCA and its partner organizations strongly support Bill C-277 and commend all parliamentarians who are throwing their support behind it. Finally, I’d like to thank the Standing Senate Committee on Social Affairs, Science and Technology for your work in reviewing this legislation.
The Chair: Thank you very much. I turn to our guests in the room, and we have Dr. Jose Pereira, Scientific Officer, and Gerald Savoie, Board Chair, from Pallium Canada. I understand you will start, Dr. Pereira.
Dr. Jose Pereira, Scientific Officer, Pallium Canada: Good afternoon, Mr. Chair and honourable members of the committee, and thank you for the opportunity to present today and to share our insights, experiences and thoughts.
We would like to start by complimenting Ms. Gladu in moving Bill C-277 and all the members of Parliament and honourable members of the Senate who have recognized the importance of ensuring access to palliative care for all Canadians and have contributed to the development of this bill.
Mr. Savoie and I have both had the privilege of serving in various capacities within our Canadian health-care systems. Pallium Canada’s founding in 2000 was inspired by an encounter I had with a patient when I was a family physician in a small rural community in Manitoba many years ago. I learned that, with some training, we were able to make a big difference as health care providers.
Over the years, I have also worked as a palliative care specialist in various hospitals and community settings. I’ve seen patients in their homes, in hospitals and in palliative care units. I’ve set up palliative care units and have helped set up hospices, and I’ve done it in different jurisdictions, in Alberta and in Ontario. I have been involved in developing palliative care services locally, regionally and provincially, participated in research and served as a teacher in several Canadian universities. As a participant in the initial Secretariat on Palliative and End-of-Life Care from 2002 to 2005, where I served as co-chair of the education working group, I witnessed and saw its early successes.
Gerald Savoie, Board Chair, Pallium Canada: Thank you, senators. My name is Gerald Savoie, and I have been involved in health care as a leader and administrator for the past 40 years. I ran the most expensive part of the health care system — a hospital — from small community hospitals to academic teaching hospitals.
Our health care system is at an important juncture. This legislation and framework are greatly needed. The insights and thoughts we share today have been shaped by our collective experiences.
Dr. Pereira: We will first highlight what we believe to be some of the key strengths of the bill and then provide some insights for possible amendments we believe will strengthen it further.
First, in clause 2(1), the bill correctly identifies the importance of making palliative care available across a spectrum of settings from community to hospitals. Patients and their families experience different needs across their illness trajectories and often require palliative care-related services in different settings and at different times, which include care in the community, at home and also in hospital settings, particularly for the most complex situations.
Secondly, clause 2(1)(b) stresses the importance of training and education. We wholeheartedly endorse this. The World Health Organization framework and many other national frameworks stress the importance of a trained workforce that is prepared to initiate palliative care early and across the whole illness trajectory. Education initiatives are also needed to educate the public and care providers so that palliative care and the palliative care approach are no longer narrowly defined and linked to death and our last few days.
Clause 2(1)(d) stresses research and the collection of data on palliative care. As a researcher, I have experienced many challenges to accessing research funding, but I have also benefited from when such funding was available. I would suggest that the framework should not only promote but should also ensure adequate research funding. We need infrastructure in Canada to support the collection of this type of data. Some of it already exists in different places. We have amazing institutions across our country and within provinces, but they require scaling up so we can start collecting the data specific to this area.
One such example is the Canadian Primary Care Sentinel Surveillance Network, also referred to as CPCSSN, which is a pan-Canadian organization housed at Queen’s University. Case in point: It collects data from more than 1,500 family medicine practices across the country on eight different illness groups. If we could tweak it, we could start getting some excellent data on what the situation is at a primary level.
I now wish to address areas where perhaps some amendments could strengthen the bill.
With respect to clause 2(1)(a), the Canadian Hospice Palliative Care Association, with significant input from experts and stakeholders from across the country, have a very good nationally and internationally recognized definition of what palliative care is and what it offers. We do not need to redefine it; rather, we need to implement it.
With respect to clause 2(1)(e), we believe that the framework should develop national standards across several areas, including education and access to palliative care services. Such standards exist or are being developed in other countries, including right across Europe. There is current little too much variability across Canada; it truly is a patchwork within provinces and also across provinces.
Palliative care, for example, is well represented in the undergraduate and postgraduate curricula of some medical and nursing schools but lacking or absent in others. The absence is even more glaring in curricula of other health-related programs, such as pharmacy and social work. There are insufficient training and work opportunities for palliative care specialists, be they physicians, nurses or other disciplines, despite the high need. The gap will worsen in the future if we don’t address it. Professional bodies in provinces whose members and workforces care for patients with progressive life-threatening illnesses should promote and support palliative care education.
There are communities and hospitals across Canada with excellent coverage by adequately resourced palliative care specialist teams, while coverage is poor and even absent in many others. There are adequate numbers of palliative care unit beds and hospice beds in some regions and provinces and grossly inadequate numbers in others. Accreditation standards of hospitals and long-term care and retirement homes are needed to ensure workforce preparation within those settings. The patchwork that exists across Canada in these areas needs to be turned into a complete quilt.
In terms of clause 2(1)(g), I believe the Secretariat on Palliative and End-of-Life Care, or a variation thereof, should be implemented as a fundamental element of the proposed legislation. My previous experiences with the secretariat, and work with similar bodies in other countries, are that such an entity provides focus, attention and much-needed visibility. It provides an important and sustained platform to bring together the best minds and different perspectives from across the country and inspire collective change. It provides accountability at a federal level and direction provincially.
Finally, in the case of clauses 2(1) and 2(1)(f), we believe there is no need to reinvent frameworks, as they are already in place. Instead, we should be operationalizing the national framework of the Canadian Hospice Palliative Care Association. Like other countries known for high levels of access to palliative care, this framework stresses the importance of a health care system that has the capacity to provide primary or generalist-level palliative care as well as specialist palliative care. It’s everyone’s business and everyone’s responsibility.
Pallium Canada is proud of the work of our Pallium community across the country to help build primary level capacity and accessibility in the community and in other settings, such as hospitals and long-term care facilities. We would also like to add that Pallium Canada has its roots in delivering palliative care education in rural and remote communities. That’s where we started.
There are, between Pallium’s education model and three or four excellent rural palliative care services across the country, some noteworthy rural-based models that can be scaled and spread. We have a lot of pilot models and fantastic innovation in our country. We are very proud of it, and we are known for it internationally. Some of these pilots need to be scaled up.
From 2003 to 2007, we worked with indigenous leaders to start exploring how to address palliative care needs in their communities. We developed the In Our Own Voices: Aboriginal Perspectives in Hospice Palliative Care video segments. We helped adapt the handbook A Caregiver’s Guide into Inuktitut and contextualized it to the realities of the North. From 2015 to 2016, we engaged some Ontario-based First Nations communities and asked them for guidance and tried to implement their words of wisdom in our programs.
Mr. Savoie: I would like to offer a few additional thoughts. The Mental Health Commission of Canada may provide some components of a useful framework. Current efforts to inform the Canadian public about palliative care have to be significantly enhanced. It is time for systems thinking and coordination. We would be happy to elaborate further with some examples from our respective experiences during the discussion period.
The Chair: Thank you to all our witnesses. I will open up the floor to questions.
Senator Eaton: Thank you very much for your presentations. As you probably realize, this bill was very long and hard in the making. Getting it passed in the House and into the Senate is a major undertaking. We’ve done a bit of a study with former Premier Lord which showed us definitely that provinces across Canada have very different demographics and that one size doesn’t fit all necessarily. Have you been able to identify what each province and territory needs to ramp up access for their populations?
Dr. Pereira: Indeed, there is a lot of variation. I want to stress here that there are some provinces that I believe are ahead of the game and have been able to implement models and frameworks that actually provide very high levels of access of palliative care to their citizens. Alberta is a case in point, as is Fraser Health in British Columbia. We see areas in Nova Scotia doing it. Some areas in Ontario are beginning to get there.
Although there is variation, I think there is something that is common right across the board, and that is a model whereby one has a strong primary level. When I say “primary level,” I don’t mean just the family physicians and home care nurses, I mean the cardiologists, the nephrologists, everyone who is seeing patients with life-threatening illnesses with those basic skill sets. In those provinces and programs achieving excellent access, they have developed a strong primary level base supported by a strong specialist level group. They have addressed similar urban areas, rural and to a certain degree remote. I think that model is transferable right across the country. We see it in countries around the world. In some provinces, there are some weaknesses in some of these elements that we can improve upon. How that is done can differ from province to province to account for those local realities, but I think there is more commonality than we think.
Ms. Baxter: One of the initiatives of The Way Forward was to look at some models of care. We have a national document that looked at 10 models of care that were exceptional across the country.
The other point is the document I referenced in my speaking notes about the survey of the provincial-territorial governments done in February. Each of the provinces wrote their own sections of where they wanted to look in advancing a palliative approach to care. There were more similarities than differences. Each of the provinces look at things a slightly different way, but there were a lot of similarities in what needs to happen. There wasn’t one cookie-cutter approach. We need to look at maybe a basket of services, using some old terms.
But I agree with Jose around the primary, secondary and specialist level. We know some of these programs are gold standards. We just need the availability to roll some of them out. We have good working relationships with many of the provinces starting to work in this area. Five of the provinces have endorsed a national framework on palliative approach, so they are already starting to work on it. They just need the initiative and funding for them to happen.
In closing, here I am in Newfoundland, and Newfoundland has come up with a terrific plan to take a palliative approach to their home care programs across the province. They haven’t implemented it yet. They are in the thinking stage. But it’s very exciting. The provinces are starting to get their heads around some of these issues.
Senator Cordy: Thank you very much to the three witnesses here today. It has been very helpful.
I’d like to talk about clause 1(a) in the bill, which says we have to define what “palliative care” is. Ms. Baxter, in your comments, you said we have the definitions and they don’t have to be in the bill. Dr. Pereira, you said we already have nationally and internationally accepted definitions of “palliative care” is.
Should the bill contain this element, or will we get caught up in trying to develop a definition, which will waste time? Instead of moving forward, we will be looking at definitions when the definition is already out there. In light of all the good work The Way Forward initiative has done, should we just remove that part of the bill?
Ms. Baxter: Trying to be pragmatic, obviously we want the bill to be as least complicated as possible when it gets to the votes, so we’ll leave that up to the experts. I don’t think it needs to be in there. If it stays in there, we need to make sure we don’t spend a lot of effort and time in developing something that is already done. I think we need to be pragmatic around that.
One of the issues around the definition is the people who work in hospice palliative care and in our sector of the health care system have a general understanding about what we’re talking about, but it’s the other parts of the health care system that don’t. We need to put effort into rolling out our definitions and ensuring that they understand what we’re talking about as opposed to reinventing the wheel again.
Dr. Pereira: The definitions do exist. I agree as well. I think we can be pragmatic and work through it. Whether it stays the way it is or is changed, I think we can work through it.
It is important to acknowledge that it’s generally accepted internationally that palliative care begins much earlier and it’s not only limited to last days or weeks of life. As a health administrator, I experienced some of the tensions, and we acknowledge that it has to begin much earlier. For example, you have home care services and X amount of dollars to share those services with the community. Sometimes you are faced with, on the one hand, recognizing the broadness of what palliative care is and how to address it and get it earlier, and on the other hand, limited dollars on how we can spread that around. I can understand sometimes the challenges with that.
Mr. Savoie: I’d like to add for clarification. What we were specifying was that the Canadian Hospice and Palliative Care Association already has this definition, and it is recognized nationally and internationally. We’re not trying to reinvent the wheel here.
I’d say probably everything that we have been talking about today are elements that would be dealt with normally within the regulations under the act. It’s really not tweaking the act but ensuring that elements are there, and the elements usually would be in the regulations.
[Translation]
Senator Petitclerc: I’d like you to elaborate on the importance of the secretariat, providing more detailed information. The bill stipulates that the advisability of re-establishing the secretariat be evaluated, and I see that you were involved in the secretariat from 2002 to 2005. You spoke briefly about that. Could you give us some insight into the importance of re-establishing a secretariat with the same role, a different role or one that has evolved?
Mr. Savoie: I’m going to answer that in another way and, then, I’ll turn the floor over to Dr. Pereira.
I mentioned something at the end of my presentation regarding the Mental Health Commission of Canada. When I started in the hospital sector 40 years ago, 80 per cent of all mental health spending went to hospitals, where the patients were admitted. Only 20 per cent went to so-called community-based resources. Today, the split is reversed: 80 per cent of spending goes to communities. Innovative models are being used and a number of taboos have been broken along the way. Tremendous strides have been made.
Another $5 billion is being invested in mental health care. The $3 billion for home care is the largest investment in palliative care. We can make a dramatic shift with that money. It’s the time when the federal government is channelling its investments towards the provinces. There is no better opportunity for the two elements to come together, in other words, the money along with the necessary structure, thinking, design and so forth. We must not limit ourselves to the implementation. We need to take a step back. I’m very much in favour of creating such a secretariat.
[English]
Dr. Pereira: Perhaps I’ll try to answer your question by sharing my own experiences. In the secretariat, if I recall well — the years are getting on; I’m getting greyer — we had five working groups, and I was the co-chair of the education working group, and the group was comprised of people from across the country. First of all, it was incredible to be able to connect with people across the country, to see what was happening and start spreading their know-how and knowledge.
Our group, which was from different professions from across the country, set out first to identify what we thought, in broad terms, were the competencies required at a primary or generalist level. That was key. Why? Because it actually informed several activities, including our Pallium program, which was about three years old at that time. It gave us some direction because now we’ve heard from people across the country what the common things were so we could start developing a common ground.
We developed the competencies. Those competencies were then used in another area I was involved in, and that was in the development of curricula in medical schools. We use those curricula to help us.
The work done by the secretariat working group on education then gave rise to what became known as the Educating Future Physicians in Palliative and End-of-Life Care, which is a project that was funded by Health Canada, guided and informed by the work we did at the secretariat, to set up teams in each of the 17 medical schools across the country to advance palliative care. Some of them did a great job and went far, others not so far, but that’s just an example of what happened. Similar things were happening in the different action groups.
Ms. Baxter: I was actually the co-chair of the national strategy in its first iteration, and we did some good work.
One of the things that has changed at this point in time is the relationship among federal, provincial, territorial and community. The idea of the secretariat being not within Health Canada but maybe a commission like the Mental Health Commission is really quite exciting, and I think it should be something that we consider. I think it would go a long way to building relationships among the partners in the endeavour.
Senator Eggleton: My question will go to Ms. Baxter. If the other witnesses want to comment as well, that would be fine.
Ms. Baxter, in your opening comments, you talked about the government’s funding of a three-year initiative called The Way Forward, an Integrated Palliative Approach to Care, which culminated in the development of a national framework and dissemination of practical resources and tools to help governments, policymakers, regional planners, health service organizations and health care providers adopt a palliative care approach.
Here we are again today talking about a bill that’s relevant to a national framework. What happened to that national framework that you described, and what happened to the secretariat? Why did they come to an end?
Ms. Baxter: CHPCA, my association, was actually the association that got the money over the three years. It was a one-time initiative that was funded, and we were told that it was a one-time initiative, $3 million,$1 million a year for three years, and we had that amount of time to produce the work that we did.
It was a catalyst project. We did a phenomenal amount of work, and at the end of the three years we produced this national framework that was well endorsed. Many of the health care associations and also the provincial governments have endorsed it, and indeed, some of the provinces are actually using it as their foundation. It was the start of a discussion around a palliative approach to care. It was a new philosophy to Canada at the time.
We completed phase one, and there was no other funding available. It has had some legs over time. The provinces are still using it and we are still getting many calls and the website is still very active. It’s not finished, but there was no other funding available at that time. We’re all scurrying around trying to make sure that it has its legacy issues. We were thrilled it was referenced by Marilyn Gladu in the bill and that it’s being considered because I think it was a great piece of work, but it was really phase one.
Dr. Pereira: I would like to give two examples of how it’s being implemented. In this very region, the Champlain region, in 2009 we were able to implement the first regional palliative care program in Ontario.
Again, in terms of a patchwork across the country, a regional palliative care program was implemented in Edmonton when I was working there in 1995. In 2009, we were able to implement the first one here in Ontario. We actually used the emerging work at the time of that framework to think about how we were going to develop it, so it informed the work that happened here.
At the moment in Ontario, we have the Ontario Palliative Care Network, which is the provincial secretariat. That framework and elements of it are being explored and looked at to also inform the development of a more provincial coordinated strategy.
Senator Seidman: Thank you to our witnesses for being here today. I actually have a different question for each of the witnesses, if I might, a question that’s different for Dr. Pereira.
The Chair: You get one question this round.
Senator Seidman: So I’ll come back next round, if I can.
This piece of legislation will look for a framework that identifies palliative care training and education needs, so obviously that is a big issue. Dr. Pereira, Pallium Canada focuses on education.
Dr. Bernard Lapointe, who is the Director of Palliative Care at McGill and the Chief of Palliative Care Services at the Jewish General Hospital, had this to say about the importance of education:
Death is not optional, we will all face it one day; the teaching and learning about death should not be optional. Every provider should have core knowledge of palliative care.
What I would like to ask you is, what is your uptake of your education programs among health care providers?
Dr. Pereira: If I look back, we started from 2001 to 2002 and 2003, and we were piloting concepts. At that time, the one thing we were doing was actually bringing the doctors, nurses and pharmacists, the different disciplines, together. That had never really happened at a continued professional development level.
When we speak about education, for the purpose of trying to organize, we think of undergraduate education and, in fact, I would add schools, because I think it’s absolutely time in our school systems that we start introducing life skills around this so we can start having these discussions, so with undergraduate, with postgraduate, which are things like the residents who are training in specialty areas, and then what we call continuing professional development, or CPD, for those health care professionals already in practice.
Interprofessional was something new. We pioneered that. We pushed it. We did roadshows and started going into small rural communities and took our teaching there. We have developed it over the years.
Over the last three years, we have been spreading it further, not just for community-based teams but going into long-term care facilities and emergency departments. We worked with our colleagues in Nova Scotia and the paramedics.
I’ve spent the last month working and analyzing the data. Every one and a half days in Canada, there is a Pallium course happening, with an average of 25 learners in each course. In the last two fiscal years, there have been over 400 courses across the country at a CPD level, so health care professionals who are already in practice. We have trained over 9,000 learners across the country. I say “we.” It is the whole Canadian community. It’s not us who fly out to do it. Our model is local growth, local development, local organization and local spread.
I believe we need to reach the tipping point. In some areas, we have. We now need the resources, the push and buy-in from the provincial ministries to say, “This is important,” support it and put in place the conditions to allow this to spread.
Just this afternoon, I did a keynote presentation in Toronto before coming here and I showed some data on the medical schools. My other work is with a fantastic organization called the College of Family Physicians of Canada, and I’m director of research there. We were looking at the data recently. Across the 17 family medicine residency programs in the country, 65 to 70 per cent of the residents are now saying that when they get into practice, they will be doing it. We’re getting places. We now need to scale it up and move to the next level.
Senator Dean: Thanks to all of you. There’s nothing like having experience and experts in the room. I appreciate very much the answer to the question about regional variation and how we can learn from pilots. I’m going to shift topics to something that hasn’t been discussed much.
One of the elements in the overall strategy relates to caregiver supports. Perhaps the best way to ask the question is as follows: In those successful pilots that you’ve identified and worked in and that we’re learning from, what can we learn from those successes about the sort of caregiver supports that were in place there? We’ve heard about bereavement support. I’m thinking about that part that is pre-bereavement. In the broader sense, what can we expect to see in terms of that caregiver support?
Mr. Savoie: This is something that Pallium Canada has been addressing for quite some time. When we talk about carers or caregivers, we often think about health care providers. They’re already well addressed in our LEAP programming. The family caregiver or friend who is there requires a tremendous amount of support.
We have a LEAP for carers that we have developed and tested. We tested it internationally before bringing it here to Canada. The carer takes care of the individual who is facing the life-threatening or life-ending challenge. They’re taking care of 90 per cent of the care that is being offered. Within the formal health care system, we take charge of the patient. We direct. We don’t necessarily ask the patient about all of their needs. We don’t even necessarily address the carer. What we see is both the patient and the carer are a team, and if you bring that team together and support them, we’re looking at “just in time kinds” of support that can be brought in an evolutionary and innovative way directly at the carer.
There is programming. There is learning. If we expand this into the school program, life skills are part of it. But there’s another large component. It’s the compassionate community. It’s something for which we are trying to be a catalyst across the country. We just had the international conference here in Ottawa on that very topic. CHPCA, Pallium and other great support brought this together. There’s tremendous opportunity here on how to turn the community on.
As an example, we have more than 15,000 trained learners to date. We also have facilitators. These are practitioners who say, “I want to do more. I want to train others.” We have a certification where people are engaged and they sign a document saying they will practice this. We follow up with them six months later to see what’s being done. Imagine if we turned it on its ear, modified it, brought in the community through community development and that volunteer support to come in and support the carer. Compassionate communities in other places in the world are there to support the carer, 100 per cent. We already have interest from several of the provinces. Nova Scotia and other provinces are already looking at this. B.C. is very advanced. They have a directional piece there.
I’ll stop there, but there is a lot to be done. This framework, the creation of what you’re trying to do now, would support those types of developments.
Ms. Baxter: We haven’t done a great job of supporting caregivers in this end-of-life experience. The friends and family of the loved ones who are dying are the ones making a good death possible. We have more than 35,000 volunteers trained in hospice and palliative care in this country. We have a lot of things we could be doing. Unfortunately, caregiving is not part of the traditional health care funded programs and we haven’t really given a lot of consideration to it. Even the compassionate care benefit that was recently extended two years ago, the uptake on it is not as good as it could be because we don’t market it or tell Canadians much about it. There’s a lot we need to do.
The senator mentioned bereavement. It’s one of the areas of the continuum at the end of life that is never funded through any of the health care programs. It’s one of those lost things. November 21 this year will be the first ever national bereavement day in Canada. We need to pay more attention to it.
A lot of these programs that we are looking at, and Mr. Savoie mentioned compassionate communities, have to be on the local ground provided by local groups. We’re at the early stages of some of that, but we need to spend more effort on how we support caregivers in this country.
[Translation]
Senator Mégie: You were part of the Secretariat on Palliative and End-of-Life Care. Do you think it could oversee palliative and end-of-life care training in all the provinces? It wouldn’t mean interfering in the provinces’ affairs given that each of their training plans is tailored to their respective requirements, but there are a number of deficiencies when it comes to training. Some people do not have access to training and do their best. Some employees are well-trained, and others less so. Is there a way to standardize training, and do you think the secretariat could play that role?
Dr. Pereira: Developing a standardized program for the entire country is extremely difficult. Why? Because each curriculum is different. It’s important to have a flexible mechanism that can be used in different situations.
[English]
Even in medicine, each curriculum is different. In the 17 medical schools, curricula are different. Some are problem based, others are case based, et cetera. What we can do is define the standards.
For example, I lived for a few years in Switzerland and we did a study of the five medical schools there. We didn’t say, “This is what the curriculum has to be,” but we said, “At the very least, this amount of hours has to be covered.” We actually exposed the experiential learning to patients, because that is extremely important, and then you leave it up to each medical school, and we’ve done the same in Canada. At the College of Family Physicians, for example, we put up what the standards are but we don’t tell each program this is what the curriculum has to be.
A secretariat can very much say, “Look, we need this number of hours.” In the medical schools, for example, don’t wait for the last year of medical school, but integrate it throughout, and in the nursing programs. There should be standards regarding pharmacists and social workers. Those are standards that a secretariat can put in place and, because it’s pan-Canadian, you can bring the wonderful richness together. I don’t think developing a standardized curriculum is possible, and I’m not so sure that is the right thing, but putting in place the standards and accreditation, absolutely.
Ms. Baxter: I just wanted to take a slightly different angle to the question. The reason I’m actually in Newfoundland is I’m at the Canadian Partnership Against Cancer meeting and they’re doing lots of work in palliative care amongst other areas of cancer care. It’s a standalone secretariat for cancer money, and as Mr. Savoie mentioned, the Mental Health Commission. Both are great models to look at when we talk about a secretariat.
Senator Omidvar: I’m curious about your answer to this question, if you have one. Do any of you, as experts, have an average figure of what it would cost to provide palliative care on an average, regardless of who pays for it?
Mr. Savoie: It costs an awful lot. Let me put it in perspective. We often get tied up in this costing mechanism. There are lots of avenues to look at. You have to think about it differently in the sense of where our patients with issues around end-of-life end up. They end up in emergency departments and are admitted into beds, and these are avoidable admissions. We are spending a huge amount of money in the most expensive part of the system, whereas most of the care could be provided within the community.
I don’t necessarily get caught up in the cost issue because we’re already spending it multiple times over within the system, and we are at a juncture whereby, with the aging population and chronic disease management, the volumes are already crushing our system. Something that has always focused our health care system is a good financial crisis, and we’re facing that. If you look at the exponential curve that’s occurring within the next couple of years and what it will do to our hospital system, we’re already overcrowded in emergency departments, we don’t have sufficient beds and they’re being occupied by patients who are not properly cared for and people are dying within the emergency department.
In the example where the paramedics in Nova Scotia and P.E.I. have come in, they’ve actually reduced the number of visits to emergency. We’re reducing use of beds and so forth.
I would flip it on its ear and say that we already have a huge amount of money we spend on inappropriate settings and supports. Imagine if we invested a portion of this. Link that to the new monies being tabled within the health accord, where it’s additional funding to this new access called home care and better access to palliative care.
There’s lots of room for costing. It just depends which way you want to come at it, whether it’s avoidance or not. It’s much less costly developing it within the community.
The Chair: I sense that wasn’t quite the answer you were looking for.
Senator Omidvar: I got context, and I appreciate that, but I still want the answer, if they have one.
Dr. Pereira: If we take the money that exists and use it more wisely, I think we can do better.
There are studies looking at the costs. There’s one study — and I don’t have it in front of me so I can’t remember the exact figures, but I can refer you to it — by a colleague named Konrad Fassbender out of Alberta, who is working with colleagues from across the country. They looked at the costs in the last few months of life, and they were very high. They not only calculated the cost in terms of the health care components or the health care system we’re using, but they also calculated it in terms of hours lost to family members away from work, et cetera. They calculated $25,000 per month in the last few months. Obviously, there are variations. That’s an average. In some places it’s higher or lower, and it varies a lot across the country.
For example, in some provinces, such as Ontario, hospice is not covered entirely in the integrated health care system. If one has a heart attack and ends up at the Heart Institute here, they’re not going to say to me, “We’ll cover 30 or 40 per cent of it through funding and the rest is through fundraising and charity.” Why do we do the same with hospices across the country?
For a hospice, for example, we know it costs $430 in Ontario, per day, to care for someone. For palliative care units, it’s $800 to $850 a day. I want to stress that we need both hospices and palliative care units and there’s an important reason why. In the acute care sector, as my colleague was saying, it runs into $1,100 on average but it can get much higher than that if you have a patient in an ICU, for example, where there have been no discussions about what’s important for you at end-of-life.
There’s been fantastic work done in Alberta on the implementation of a regional palliative care program. It has components that include enough hospice beds for patients at end-of-life who are not complex but can’t be cared for at home. It has a strong community building up of family doctors involved and a specialist team that goes out to support the family physicians and goes to long-term care homes to help out as well. It has a specialist palliative care unit for very difficult cases in a hospital setting. So it has all these components and it has palliative care teams inside the hospital.
What they showed was that over a number of years, for every patient, they ended up saving just over $1,000. It may not sound high, but they invested money up front, because before 1995 in Edmonton, there were no hospice beds, no strategy and no consult teams in the hospitals. It was a small palliative care unit. They took the money, invested it and, at the end of the day, are now showing much better palliative care, phenomenal access levels to palliative care and savings that, cumulatively over the years, are in the millions of dollars. There’s some good data around that.
The Chair: Ms. Baxter, do you have any quick comments on that?
Ms. Baxter: No, I think both the fellas there did a great job, so I’ll leave it at that.
[Translation]
Senator Cormier: Thank you very much for your presentations and the work you are doing in the health care field. Mr. Savoie, I’d like to commend you for your work at the Montfort Hospital and, if memory serves me correctly, Campbellton Hospital, in a different time.
I imagine you’ve clearly understood the importance being placed on the famed secretariat. The sense is that the secretariat will serve as the main implementation mechanism for the bill.
In fact, I have questions about how that will work on a practical level. The bill refers to supporting improved access for Canadians to palliative care. It refers to the notion of equal access. I’m not sure, though, that the term “consistent access” is actually equivalent to equal access, or “égal accès” in French.
If you were hired to head the secretariat — whose leadership would have more than one person, I hope — what key measures would you put in place with the provinces to ensure equal access, knowing that the regions are very different and have very different looking health care systems?
Mr. Savoie: Very briefly, I think it starts with a cultural change. We need to think differently. If we have to direct services out to the community, we need to establish empirically validated best practices. As Dr. Pereira mentioned, we would be making a dramatic shift if we were to train enough health professionals from a best practice standpoint, bringing them to the point where they wouldn’t want to use anything other than best practices.
What matters are the education and training standards as well as the modes of knowledge transfer. We would approach the implementation, as you said, in such a way as to get everyone to use only those methods.
[English]
The Chair: Ms. Baxter, any comments on that? I take that as a no. We will now move on to the second round. Now, this meeting will end at 6:15, andI want to try to get as many more questions in as we can. Quick questions, to the point, and responses equally. I suggest you direct it to one witness. We’ll leave it at that, and we’ll keep going in that fashion.
Senator Seidman: Ms. Baxter, the legislation before us today identifies home care as an access point for palliative care, and we know that Canadians prefer to receive care at home. We’ve also discussed that home care can contribute to lower costs in the health-care system. We heard also, and we know, that the 2017 federal budget committed $6 billion over 10 years for home care, including palliative care services. There’s my question for you: Has your association received any further details about how this money will be spent?
Ms. Baxter: I’m not an expert on this, and we were actually talking about it at our meeting today. Right now, the provinces and federal government are negotiating what will be included in each of the plans.
To date, besides Newfoundland, which I know has included palliative care in their plan, the other provinces we haven’t heard much about. So I’m not really sure where they’re going with that. Obviously, we’re encouraging the provincial and territorial governments to take advantage of documenting palliative care in their home-care plans to access the additional funds. We’re not in the inner circle on those discussions, but we’re trying to push that forward.
I just wanted to comment that the federal government is actually the fifth-largest health care system in this country behind Ontario, Quebec, B.C. and Alberta, so when we talk about provincial-territorial, we really need to talk about the federal government as health-care-provider players too because they provide different quality services to Aboriginal people versus veterans versus prisoners. That is something to consider too.
Senator Eaton: If you had one message to give the health minister, what would it be? One thing.
Ms. Baxter: To me?
Senator Eaton: No, I’m asking the gentleman at the end.
Mr. Savoie: Implement.
Senator Eaton: Dr. Pereira?
Dr. Pereira: I totally agree. It’s everyone’s business.
Mr. Savoie: It’s everyone’s business. Let’s implement. It’s time. We know enough.
The Chair: Senator Cordy is asking her question through Senator Eggleton.
Senator Eggleton: I still have a question of my own.
The Chair: Not yet.
Senator Eggleton: This deals with public education. The bill does mention palliative care training and education needs of health care providers, as well as other caregivers, but it doesn’t talk about public education on the issues of palliative care and advanced care planning. Why not, and should it? I’ll start with Sharon Baxter.
Ms. Baxter: I’m thrilled that you asked that question.We actually are a big proponent of the need to have a public awareness campaign or education campaign, and it was part of the comments that I made. It is not in the bill as it is, and, if there were amendments to the bill, it might be a good thing to have. I don’t think that it not being in the bill means that it won’t happen either. I think that we’ve all agreed that we need to look at advanced care planning. We need to look at public awareness and how it rolls out to Canadians, so it’s very important. I’m glad you brought it up.
Senator Petitclerc: The bill calls for providing development of a framework, but, the more I hear everybody, the more I get a feeling that it’s not about developing and that lots has been done. How much has been done already? Should we start from scratch, or is it, like you said, just about implementing? How are they going to do that? Quickly.
Dr. Pereira: We have examples across Canada where it is being implemented. Let’s go across Canada and say, “How did you do this,” and let’s do it quickly and move forward on it. Each province actually has some richness and a beautiful shining light. If we bring in all of those shining lights, we’re going to have this wonderful lit up country that our Governor General may see next time from space.
Senator Eggleton: Now, my own question. I’m interested in the burden of cost to patients and caregivers. If someone gets palliative care services in a hospital, it comes under the Canada Health Act. It’s hospital services. But if it’s in a hospice or a long-term care facility or at home, it doesn’t. There could be other programs, perhaps, in provinces that help with some of these costs in those other facilities, but I’m interested in just how much of a burden it’s going to be to somebody out of pocket. Some of them may have insurance, but a lot of them may not. They may have to pay it out of their own pocket or their families pay it out.
Would it be possible, in that context, I wonder, since we see hospitals now where they seem to have satellite services, for a hospice, for example, to be attached to a hospital? It would still provide the kind of efficiency of scale and services, but it could be brought under the Canada Health Act. So I’ll start with you two gentlemen. Oh, did I say Sharon Baxter first? I did.
The Chair: You say one.
Senator Eggleton: Dr. Pereira looked anxious to answer, so Dr. Pereira can start.
Dr. Pereira: You just identified a big glaring gap. Are there models to be able to give broader access? Absolutely. Again, I’ll go back to Edmonton, Calgary, where I worked for quite a few years. We were able to open up hospices in long-term care facilities, applying standards of hospice care, palliative care, and the appropriate staffing ratios in a hospice. But we don’t have to build the brick and mortar. We don’t have to go looking for the money for the brick and mortar and maintain the building. There are models out there where you can use existing resources and reduce the costs.
But remember as well that when you don’t have hospices, a lot of our patients are lying in emergency rooms or sitting in hospital corridors. I work at Brampton hospital. I was there the night before last. People waiting.
There are models where we can use existing facilities. In some parts of the country, there aren’t those existing facilities, so you have to build them from scratch. But your point about economies of scale is so important, and I think that that’s also a lesson to us, as a palliative care community, to take into account that we need to think about economies of scale as well.
The Chair: Ms. Baxter, hold your thoughts on that. I’m going to go to Senator Omidvar and then come back to you if time permits.
Senator Omidvar: I understand the background, the need, the urgency, in fact. I’m not quite sure I understand why legislation is required to fix the problem. Dr. Savoie, perhaps you can help me to understand what will happen if there is no legislation of this kind.
Mr. Savoie: If there is no legislation, there is very little guidance. We have pockets of excellence within health care across the country in almost any dimension you look at. What brings us together and gets it concentrated and focused? This is the importance of what you’re trying to do at the moment. The parties are all there. It’s just what direction are we going to take? So everyone pulls in their own direction, and we get inconsistencies. We get development in a certain way. There is no basic minimum standard of care, of education, of anything. I think that’s the short answer.
The Chair: Ms. Baxter, did you have a quick observation on the financial question?
Ms. Baxter: Yes, I wanted to say something about the burden of cost. The Economist’s report put out a study in 2010 and 2015. In 2010, Canada rated 27 out of 40 out of OECD countries around the burden of cost for home care. We did quite badly considering that, on the other scales, we did quite well. One of the issues that has been a startling fact to me is that all of Europe did better than Canada, so we need to look at how, on the burden of cost to the pockets of Canadians, we can do better with that. One of the things is having this sort of balance between all of the various settings of care. We need to look at some of those things. We have talked about it enough tonight, I think, but, just to let everyone know, we have a lot of ground to gain on that. There are a lot of models that we can look at. It comes back to the Canada Health Act and what is covered and what is not covered and the disparities between the provinces. But I think it can be tackled.
The Chair: Thank you very much. This has provided quite a range of important issues and discussion here. It clearly emphasizes the need to bring a focus nationally on cooperation across the jurisdictions. I think this bill may very well be a catalyst to moving in that direction.
Dr. Pereira, at the start, I was struck when you spoke about the wonderful pilot projects that have occurred but haven’t been implemented. Through our many studies, we have learned that Canada is a country of pilot projects, and we have great difficulty in implementing. Once again, I think it’s important for the provinces, the federal government and the other stakeholders to be engaged together to have a mechanism by which those results can be transferred. Hopefully they can ultimately be implemented through a recognition of their value to the overall health care system.
Finally, both our sets of witnesses emphasized that palliative care has been well defined. My experience on the MAID Committee was that, yes, everyone has a pretty good idea of what they think the definition of palliative care is. How they interpret applying it appears to vary widely. Therein, I think, is the substantive issue. For example, on the question of when it should begin and in what disease pattern and so on, we heard a lot of different views. I would suggest that the knowledge you have with regard to the definition is likely to form a good basis to answer the framework questions. We know what it is. How do we apply it within a system that will be effective across those jurisdictions?
I want to thank the witnesses. Obviously, the three of you have tremendous experience in this, practical and long. You have a great deal to offer as this goes forward. It’s why I think the bill again indicates that all the stakeholders have to be involved in this discussion. We’re seeing that increasingly in key issues that have a national kind of context. On behalf of the committee, I want to thank you for your answers to our questions.
Colleagues, once again, I thank you for those questions. With that, I declare the meeting adjourned.
(The committee adjourned.)