THE STANDING SENATE COMMITTEE ON SOCIAL AFFAIRS, SCIENCE AND TECHNOLOGY
EVIDENCE
OTTAWA, Wednesday, October 25, 2017
The Senate Standing 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 5:15 p.m., to continue its study of this bill.
Senator Kelvin Kenneth Ogilvie (Chair) in the chair.
[Translation]
The Chair: Welcome to the Senate Standing Committee on Social Affairs, Science and Technology.
[English]
I’m Kelvin Ogilvie from Nova Scotia, chair of the committee. I will invite my colleagues to introduce themselves, starting on my right.
Senator Seidman: Judith Seidman, Montreal, Quebec.
Senator Stewart Olsen: Carolyn Stewart Olsen, New Brunswick.
[Translation]
Senator Mégie: Marie-Françoise Mégie, from Quebec.
[English]
Senator Eggleton: Senator Eggleton, deputy chair of the committee.
The Chair: We are here today to deal with Bill C-277, An Act providing for the development of a framework on palliative care in Canada. We have two groups with us today. We are delighted to have them. I’ll identify them as I introduce them, and I’m going to introduce them in the order they appear on the agenda.
In the first instance, we have the Canadian Cancer Society with Kelly Masotti, Director, Public Issues; and Shawn Chirrey, Senior Manager.
Ms. Masotti, I believe you will give the presentation.
Kelly Masotti, Director, Public Issues, Canadian Cancer Society: Thank you very much, Mr. Chair. It’s my privilege to be here on behalf of the Canadian Cancer Society, the country’s largest health charity and the only charity that supports people with all types of cancer.
Every single hour, about 24 Canadians hear the words “you have cancer,” joining the more than 810,000 Canadians already living with the disease. One in two Canadians are expected to be diagnosed with cancer in their lifetime, and by 2035, we expect 35 per cent more new cancer cases than in 2017.
We continue to make progress in having more Canadians survive cancer, but as many studies show, cancer patients, survivors and families still face challenges in getting the health information and the practical and emotional support they need.
The Canadian Cancer Society strongly supports Bill C-277. It’s estimated that up to 80 per cent of Canadians receiving palliative care are cancer patients. But, thousands across the country lack timely and affordable access to the high-quality care they need. As a result, 45 per cent of cancer patients die in acute care settings, which often does not reflect the patient’s wishes and puts pressure on costly hospital resources that could be better used to serve other needs.
It has been shown that palliative care has a significant and positive impact when delivered on its own or in combination with standard cancer treatments. That’s why the Canadian Cancer Society supports and promotes the need for improved development and delivery of early, active, competent and compassionate palliative care.
In 2016, the Canadian Cancer Society released a report, Right to Care: Palliative Care for all Canadians, which provided an overview of the state of palliative care in Canada. Based on a review of recent studies and the input of leading Canadian experts, the report identified gaps in palliative care across the country; considered their implications for patients, families and our health care systems; and made recommendations to address them.
In this context, Bill C-277 represents an important step forward. The adoption and implementation of a national framework with clear standards, definitions and data collection requirements will contribute to addressing some of the key obstacles Canadians face in assessing palliative care.
The Canadian Cancer Society is asking you to implement this bill and is eager to work with you to realize these goals. We are Canada’s primary source for trusted cancer information, and every year our services help millions of people access treatment, care and support, often while they continue to work and live at home or in a community setting.
We want to work with the federal government to expand our reach and increase our capacity in providing information and emotional support so that we can help Canadians learn more about their diagnosis, so they can locate home and palliative care support, and so they can connect with peer support programs and navigate the health, social and financial services available to them.
On behalf of the one-in-two Canadians who expect a cancer diagnosis, their families and their loved ones, we ask that you adopt and implement this bill. It’s no longer the time to talk about palliative care; it’s the time to act on palliative care.
Thank you very much for your time.
The Chair: Thank you very much.
Now I’m going to turn to Pauline Tardif, Chief Executive Officer of the Alzheimer Society of Canada. Welcome back.
Pauline Tardif, Chief Executive Officer, Alzheimer Society of Canada: Thank you very much, Mr. Chair. Good afternoon and thank you for the invitation to appear before this committee to comment on Bill C-277.
[Translation]
I am very pleased that the committee has once again invited the Alzheimer Society of Canada to contribute to such an important health policy issue as a national palliative care framework.
[English]
Right now, well over half a million Canadians are living with dementia, and as you very well know, those numbers are growing exponentially. Access to palliative care has become important today, which is why we have been following Bill C-277 very closely and with great interest.
It is also why the Alzheimer Society of Canada has been a long-standing member of the Quality End-of-life Care Coalition of Canada and is supportive of their efforts to improve access to high-quality hospice palliative end-of-life care.
This afternoon, I would like to address two issues, the first being the role of palliative care in dementia diagnosis, treatment and care; and, second, how a framework for palliative care would align and support a national dementia strategy for Canada.
Alzheimer’s disease is progressive, life-altering and ultimately fatal, even if people live with dementia for many years.
[Translation]
In fact, palliative care is about providing the best possible quality of life for people with life-threatening illnesses like dementia, right up to and through their final days. The Alzheimer Society of Canada encourages people with dementia to do advance-care planning as soon as possible after diagnosis. Access to quality palliative care helps minimize unnecessary suffering and improves the quality of dying for people with life-limiting illnesses.
[English]
A palliative care treatment plan must start early for Canadians, including those living with dementia. That’s why the Global Action Plan on the Public Health Response to Dementia, adopted by 194 countries of the WHO in May 2017, explicitly refers to palliative care as a core component of the continuum of care for people living with dementia.
Palliative care planning, says the WHO, should begin at the point of diagnosis and extend through the end of life and into the bereavement stage for families and care partners. Because dementia is progressive and therefore grows worse over time and will impair the many functional abilities of the individual, policy and practice guidelines must cover the entire course of living with dementia, from diagnosis to end of life.
This approach was also clearly stated in your own committee’s landmark study on dementia in Canada. Your report stated:
Integrating appropriate palliative and end-of-life care has become an important component of the care offered, regardless of where dementia patients live out the last of their days.
In June, the Senate helped Canada make history by approving the National Strategy for Alzheimer’s Disease and Other Dementias Act. At that moment, you are very aware that we became the thirtieth country in the world to announce plans to develop a national dementia strategy. I would be remiss if I did not take this opportunity to thank each and every member of this committee for your landmark study and the energy you gave to move this important legislation forward.
The development of a palliative care framework, as proposed by Bill C-277, would help inform the work that is already under way to create the national dementia strategy. Much like the national dementia strategy, the bill is designed to support the provinces and territories in developing better palliative care plans and advancing best practices across the country. A strong palliative care framework will be inclusive and collaborative and will complement our work in developing the national dementia strategy.
To inform our work, Canada also has the opportunity to learn from palliative care best practices that have been integrated into national dementia plans in 29 countries. For example, dementia-friendly communities like Japan have set a global example in implementing responsive end-of-life and palliative care practices. In addition, Alzheimer’s Disease International recommends that in view of the growing number of people dying with dementia, preparation for the last phase of their lives should be added to these strategies.
We all want and we all deserve to access comprehensive palliative care services, and people with dementia are no different; they want the same thing.
I would like to make one comment regarding subclause 2(1) of the bill.
[Translation]
The Alzheimer Society of Canada firmly believes that stakeholders also need to be engaged in the creation of the framework, not just provincial and territorial governments responsible for health, as well as palliative care providers. Canadians who will be impacted by the outcomes of this framework also need to be involved in the conversation, including caregivers and persons in the earlier stages of dementia.
[English]
A framework for palliative care will be better informed and responsive to Canadian needs if it is informed by Canadians as well as provincial and territorial health care leaders.
Mr. Chair, on behalf of the Alzheimer Society of Canada let me conclude this afternoon by pledging our support for initiatives that will improve and provide greater access to palliative care for all Canadians, and especially in our case for those living with Alzheimer’s and dementia.
Again, I thank you for the opportunity to present today and I would welcome your questions.
The Chair: Thank you very much.
I’m now going to move to questions and we will invoke the one-question-per-round rule.
Senator Eaton: Thank you very much. I apologize that I was late; I was at a special meeting.
You said two very interesting things. You said that palliative care should be started at the diagnosis of Alzheimer’s. Can you give me specific things you would tell my family and me that you could do to improve my quality of life if I was diagnosed today or tomorrow?
Ms. Tardif: One of the biggest challenges in accessing palliative care is we delay the conversation about palliative care to the very end stages of life. Good, strong, robust palliative care practices encourage discussions about advanced care planning from diagnosis.
We know with dementia that people will pass away from dementia or Alzheimer’s — as with cancer or other terminal diseases — and they might speed up the pace of that progression. But our experiences and the health care professionals and staff in hospices who live with dementia tell us that resources are so limited. Even GPs aren't talking about accessing palliative care until very end late stages.
What would we encourage you to access in early diagnosis? We would encourage you and your family to have those conversations with your health care professionals and be supported. We know that palliative care, death and progression of chronic diseases impact the families. Palliative care isn’t about the person who will die in three months; this is about bringing people through the end-of-life process.
Ms. Masotti: From the cancer perspective, we know that if palliative care is started at the beginning of the cancer journey, it has the ability to actually extend the lifespan of the person going through cancer. We would argue the same thing; it needs to start right at the point of diagnosis to allow for that to happen and to allow for those services that are outside of the typical scope — the psycho-social services — to begin at that starting point.
Senator Cordy: One of our witnesses last week said that our mortality rate is still 100 per cent, so I think it’s important that we all have the conversations, as you were saying.
I’ve been reading that Canadians are reading a lot about palliative care and they really want to be part of it. We know that most Canadians want to die in their homes and, in fact, the reverse is happening. Ms. Tardif, you said they need to start having the conversations.
Ms. Masotti, you talked about having to start at the beginning, as soon as we have a diagnosis. That’s a big change in palliative care from “You have two days to live, so you will get palliative care now.”
One of the challenges is that people don’t know how to start the conversations with their health care team. While they may be reading about it, they are not having the conversations. How do we engage Canadians and educate Canadians so that in fact they are having those conversations at the diagnosis stage, or if not at the diagnosis stage, certainly in the beginning?
Shawn Chirrey, Senior Manager, Canadian Cancer Society: Definitely the research is showing that both with survivors and palliative care, you need to have advance care plans or survivorship plans and that they add a lot of value to the experience of the patient and the family. Doing that very early on tends to make the difference.
Ms. Tardif: Senator Cordy, I would add that organizations such as ours, the Cancer Society, and many others can only do what we can do. Even if we inform people and we encourage them to have that conversation with their families and health care professionals, there is too little space for them to do that. I’m not sure that the health care providers are having the conversations, to answer the question that you pose.
My hope is that this framework would impose upon them the mandate to do that and to include, as I mentioned in my presentation, Canadians who actually need or have gone through a palliative care process with their loved ones. If it’s not informed by Canadians, we risk having a siloed approach again that might take care of health care concerns, if you will, and system concerns but not address the very important question that you pose.
Ms. Masotti: I also think it speaks to the need and the importance around a public education piece or strategy or whatever we’re going to call it. I don’t think Canadians know to even start that conversation. I don’t think they know what to say, so it’s important that a public education piece takes place.
There are best practices around this country. I came from working for the Canadian Psychiatric Association. I think we just need to turn to the mental health community and have a look at what they did and all of the wonderful work done around the stigma and destigmatization of mental health. They’ve done it. They’ve got the Bell Let’s Talk campaign and all of these wonderful things that are happening. If we can do that around mental health, I think we can do that around palliative care; it’s just a matter of education.
Senator Eggleton: Thank you very much to the three of you being here today.
Yesterday I spoke to the Alzheimer Society in Toronto, and Pauline Tardif was there to make sure I didn’t go too far off my remarks. I presented this committee’s study on the matter to a number of people, some of whom are caregivers and others who are Alzheimer patients.
A national framework is what this is about. We use similar words in both cases of cancer and dementia. In the dementia report, we did say that there should be a partnership. You made this point, Ms. Tardif, about partnership being more than just the governments. I totally agree.
We recommended that the partnership in the case of dementia be similar to the partnership against cancer that already exists. I’m interested to know how your two organizations are helping people in a partnership framework to prepare and plan for palliative care. I’d like to know whether the partnership against cancer is helping in that regard. How does it work into that framework as well?
Mr. Chirrey: They have been fabulous. They just put out this great report looking at the palliative care issue. It just came out in September, and they’ve identified a bunch of gaps. They’re showing the challenges and what is working in other provinces. They have done a great job at shining a spotlight on that, definitely.
For us, it’s mostly about providing the informational and psycho-social supports to patients and loved ones when they need it and at the stage they need it. We provide online, in-person and on-the-phone supports to people. It’s really having that breadth of information across the cancer journey, from diagnosis to palliative care planning, having that information available to them when they need it and making it easy for care providers to share that information. That’s been our main role.
The partnership has been a great model in keeping a good sense of what is happening in the country. The provinces weren’t able to talk to each other in the same way before the partnership. I’m part of many of their screening networks, and the same thing happens there; there is a lot of knowledge sharing and learning, and quicker changes are happening because of the partnership’s work.
Ms. Tardif: Of course, you know that we look toward the cancer partnership as a great model in the area of dementia care, and we are looking forward to a national dementia strategy to bring us towards that in a more comprehensive way.
Very similar to the Canadian Cancer Society, our role is to bring people through the dementia journey, so we have discussions with them about palliative care at the point in time where they come to us. And, of course, they go from early stage to mid-stage to end stage, and the conversation changes throughout that progression because their questions change as well and the way they engage with their health care professionals changes.
What I would say, if I dare be so bold, organizations such as ours are very good at engaging individuals in that palliative care discussion. In fact, we are very bold in doing that and very honest, open and transparent when people connect with our organizations.
I would suggest that the gap in partnership is with the health care professionals. So this framework mandates health care professionals and palliative care experts to come together. That’s why I think the partnership that you signal would be much stronger if it went beyond those individuals named in the framework to engage organizations such as ourselves and the coalitions that we are part of, whether it’s cancer or the broader Quality End-of-Life Care Coalition that I mentioned. We are part of those. Those coalitions do exist, but they are more siloed from the health care and palliative care approach. The framework speaks to the health care piece but doesn’t speak to the community benefiting from palliative care or needing palliative care. My hope would be that we could be engaged in the creation and the delivery of the framework objectives.
Senator Eggleton: Thank you.
Senator Seidman: Thank you all for being with us today. I appreciate the importance of this legislation for cancer patients and the need for early integration of palliative care for patients with cancer. I would like to begin by addressing my question Ms. Masotti.
The committee heard broad support from all witnesses who have come before us, telling us two things: First, the time to act is now. Indeed, you finished up with that in your presentation. And, second, that we are not starting from scratch, recognizing that an enormous amount of good work has already been done toward the development of a framework. It’s our hope, of course, that once the bill passes, the government will move immediately in order to complete the consultations within the one-year framework laid out in the legislation.
My question to you is about what comes next. In your view, how can we all ensure that these consultations meet their objectives and produce a fulsome report to Parliament with an actionable framework within the allotted amount of time?
Ms. Masotti: You are correct. We would agree that there is a necessity to move this piece of legislation forward.
The palliative care community is an interesting one, because there seems to be right now consensus among many organizations. There aren’t conflicts within these groups of organizations.
Pauline keeps mentioning the Quality End-of-life Care Coalition of Canada. Each one of our organizations participates in that coalition. I think that’s probably the place to start, speaking with those organizations who helped to influence the framework that was created from that coalition.
Bringing in and continuing to consult with the organizations that work in this area, to really hear from them, I think that’s the place to start.
We don’t have this in our notes, but I do agree with making sure that you’re bringing in the patient perspective. That’s a very important piece of all of this, which I’m not certain has taken place yet.
Mr. Chirrey: There are some huge data gaps about the best things to do. We need better evidence. We have great evidence at diagnosis and death evidence, but we don’t have the in-between data. It’s hard to make good decisions when you don’t have good data, so we need better standards around the data.
We also need better education for the public and health care providers. There is limited education. If you’re in the cancer system, it’s a little better, but if you’re with your primary care provider or others, it’s the question about doing it earlier and how you do that; and it’s partly the provider side and having better education for providers.
We’ve heard that with survivorship as well; there is a big gap there on provider education.
[Translation]
Senator Mégie: I met recently with a group of ambulance drivers who helped me understand the important role they play in remote regions. They are not just emergency responders, but also contribute to community life for seniors and persons with dementia. They also provide support to persons in palliative care. At first, I asked them how they saw their role, and they explained it to me. With regard to the plans being developed, for remote regions where it is more difficult to obtain training, have you thought of including these ambulance drivers in your national training program for stakeholders?
[English]
The Chair: And if you could tie this into the palliative care piece in your answer.
Mr. Chirrey: That was happening in Nova Scotia, and I believe P.E.I. is the other province that is looking at it. Many provinces are looking to see what happens there, but I know that paramedics are providing palliative care and dealing with pain issues in the community, and it seems to be working very well there. I haven’t seen a full evaluation, but many of the cancer agencies are looking at what is happening there. We’re hopeful, but it seems a much better way to provide care in the home from what’s happening in that one model.
Ms. Masotti: To speak to your point about remote communities, we know there are disparities across the country in palliative care and there are even greater disparities in remote and indigenous communities.
While different approaches to care delivery may be needed given our vast and diverse geography, our expectation would be that we should expect that the quality of and access to care would remain consistent across the country.
[Translation]
Senator Mégie: We know that a great deal of training is needed for palliative care. So perhaps that kind of model should be used for other regions as well. That is what I would suggest.
Ms. Tardif: May I add something? I would say that partnerships with people working in the health care system are critical, whether in urban centres or in the regions. Our approach with organizations is very consistent. The challenges are perhaps much greater in the regions. We must be more creative in the way palliative care is delivered. We need and want to work with the stakeholders who provide community health care, such as ambulance drivers. I do not think there is any resistance in our groups. The way health care is delivered, whether in urban areas or in the regions, must include all those people, and I hope the framework being put forward here will include that approach. For our part, we want partnerships that work.
Senator Cormier: Thank you for your presentations. The way Canadians deal with the end of life obviously differs according to their culture and beliefs. Cultural security has been mentioned here. Ms. Tardif, you referred to the stakeholders who should be present. Are the stakeholders identified in the act able to consider the culture, beliefs and spirituality of persons at the end of life?
Ms. Tardif: As I understand the bill, those who participate in care at the end of life are not mentioned. I think this is a major weakness because, if you look at subclause 2(1), it refers to people who are health care professionals. Considering the group that will gather, there could be significant gaps in terms of offering perspectives such as those you suggested, which are very interesting. I do not know who will be around the table, but given their role, I would expect them to offer a very specific perspective. I would of course like it to be broader, and I would tell those in a leadership role to develop that perspective, that action plan. In order to have an impact, I would suggest including the people who are involved and those who are affected in their work. I would recommend including them in the consultation, but in the bill, the consultation does not include Canadians who are not involved in the health care system. That is how it is worded.
[English]
Ms. Masotti: It speaks to the importance of the definition of palliative care. Maybe I’m thinking about it in too simplistic a fashion, but if we define palliative care properly, some of those concerns can be incorporated.
I’ll read our definition that you can find in our report:
Palliative care focuses on quality of life of patients with progressive, life-altering illness. Palliative care includes expert pain and symptoms management; skilled psychosocial, emotional and spiritual support; and comfortable living conditions with the appropriate level of care -- whether at home, in a hospital or any other settings of patients’ choice. Palliative care is applicable early in the course of illness, in conjunction with other therapies and uses a multidisciplinary team approach to address the needs of patients and their families. End-of-life care is a component of palliative care focusing on specific care needs for someone who is dying.
I think if we pay close attention to how we define it, maybe some of those concerns can be addressed in there.
Mr. Chirrey: Within the cancer role, there has been a fair bit of work in recent years on person-centred care models. A lot of the cancer agencies and CPAC are focused on the person-centred approach, so within that, there should be room for those differences to come to light.
Senator Stewart Olsen: Thank you for being here today.
Ms. Masotti, I’m really grateful for the definition you just read because it involves my question directly. I’ve noticed that when we say, “I think we should talk about palliative care,” many patients have abandoned all hope and will say, “That’s the end of me; there’s nothing left.” I wonder how you would address that.
Ms. Masotti: Again, it speaks to the need for a public education campaign around a definition of palliative care and the importance of speaking to Canadians about why this doesn’t have to only refer to end-of-life care. I think that’s where the education needs to take place, that it is okay to start talking about palliative care at the beginning of your diagnosis.
That’s not an easy thing to do. I have my own personal experience with that right now, speaking to my father about the need to start talking about palliative care.
Mr. Chirrey: We know many Canadians are aware of palliative care, but very few people access it. About 54 per cent of Canadians are aware that it exists, but the action is what’s not happening.
Senator Omidvar: Thank you to all of you for being here.
This is framework legislation. Amongst other things, the framework would identify how to provide consistent access to palliative care across Canada. I want to ask any of you or all of you whether you think that consistency is possible given the fact that it is not the federal government that is responsible for the provision of health care; iIt is the provinces. How do you see this rolling out?
Ms. Tardif: I will counter what I said to Senator Cormier. The legislation proposes a framework that will be designed and created by the health care community, and that might create gaps for people in that experience, if you will. The positive part of that is that although the federal government doesn’t have oversight over health care, the framework does mandate health care professionals to come together throughout the country. That’s where the framework is strong. So I think it would address some of your concerns.
Is it possible? Absolutely, I think it’s possible. Bringing people together to talk about the definition of palliative care, how this impacts Canadians, what kind of best practices are happening across the country and who can learn from whom not only in this country but elsewhere are elements that reinforce my conviction that it is possible to bring people together and to increase our capacity for better palliative care for all Canadians.
Ms. Masotti: We also spoke to the need for ongoing and consistent data collection. I think that would be helpful, as well as developing and implementing measurable palliative care standards. I think that would be helpful to ensure consistency across the country.
Senator Omidvar: If benchmarks are developed nationally, would you see the federal government putting out at some point a report on consistent access to palliative care, which the provinces, I imagine, would have to sit up and take note of?
Ms. Masotti: Yes.
Mr. Chirrey: Yes.
Ms. Tardif: Absolutely. It’s written in the framework that there would be an expectation to report to the federal government on how this approach is working. So, yes, that would be my expectation.
The Chair: Just before I turn to second round, I want to pick up on a couple of things.
In each of our reports, benchmark identification and the dissemination of it across the country has been identified as a major gap existing in the country. So it would be overwhelmingly the case in this particular situation as well.
I want to go back to where we started in the very first answers, and that was the issue of early information on palliative care for the patient or the person identified as needing it.
I’m going to speak specifically with regard to the dementia study that we did. By the way, we had five persons appear before us who actually had dementia and had an early onset diagnosis. What one said and all agreed emphatically with was that you go to the doctor because you think you may have signs that signify this, and they are confirmed. What happens next is that you’re told to go home and wait to die. That was the blunt summary message: You’re told to go home; get rid of your driver’s licence; don't work; everything ends.
They contrasted that to what happens if you go to a hospital and are identified as having a heart or stroke issue, where you’re immediately sat down with a team. The same occurs with cancer in many places and most other major diseases.
At the point that the GP tells them, “Yes, you’ve got the clear signs of dementia,” instead of getting a package telling them about all the things they need to do, they’re hit first with a palliative care impact. I’m bringing that out to say to you that we really have serious issues in the dementia side of health in terms of bringing together the full package. I completely agree with what you’ve all said about early access to information and guidance as they go forward in terms of the role of palliative care. However, in the dementia category, the recommendations in our report have got to be met in order to get to the point where the person isn’t scared to death by having no good advice on how to deal with their life and immediately having to go into a palliative care discussion.
The issue we have is that even though there are Alzheimer’s societies in every province, in many provinces there are separate organizations dealing with it. This obviously would not be the case for every single person going forward. I’m referring to specific testimony as opposed to making a generalization here. But, clearly, it was significant since they represented the dementia organization of Ontario.
Along with this issue of informing on palliative care options, there’s got to be movement on our recommendations with regard to the information and even getting people identified to the dementia societies in their province and the Alzheimer’s societies, if the GPs are not able to give them a summary of that. We have to move toward a point where they get brochures and things that are comparable to what is given out regarding various forms of cancer and, certainly, in the heart and stroke area, which is really advanced with regard to the information on everything from diet and exercise right from the start.
I really wanted to emphasize that part as being so important with regard to the dementia issue and critical to them getting the support they need overall, let alone what is going to happen down the road.
I really appreciated the answers you all gave, but I wanted to highlight that gap currently in the first diagnosis issue with the dementia sector.
I’m going to remind you that this session will end no later than 6:15. We will begin the second round of questions with Senator Cordy.
Senator Cordy: This bill requires the minister to evaluate the advisability of re-establishing the Secretariat on Palliative and End-of-Life Care. So I asked the sponsor of the bill why it was just evaluated and why don’t you just say we need it back again? It was established in 2001 with Senator Carstairs, who did an incredible job as the minister, and the secretariat caused a focus. Then in 2007 the funding ended and the secretariat was gone. The reason she gave me, which was accurate, was that you couldn’t get a Royal Recommendation because it would involve funding. There is no need to bring in an amendment to ask for it because it would defeat the bill.
Aside from this bill, do you think that another bill could re-establish the secretariat? Would that be beneficial in focusing all the groups and indeed bring funding with it?
Mr. Chirrey: Yes, we think it would make a lot of sense to have it. It would provide that consistency and oversight. We know that under the Minister of Health there is palliative work currently happening at Health Canada, CIHI and CPAC under their mandate already, and some of that work can move forward. Having a secretariat would provide that oversight and consistency that you will require for this bill.
Senator Cordy: Maybe we can put it in observations.
The Chair: It is hard to conceive of a national strategy that doesn’t have some sort of secretariat. My own opinion it that’s automatically implied if you’re going to have a national strategy. The issue with the first round was that it was three or four years, but it was really a pilot. There was no ongoing funding in that particular area. If we can get a national strategy, it has to be an ongoing strategy.
I would hope, and with the testimony we’ve had and your questions on this, which is evidence with regard to a strategy being forwarded, that there has to be a coordination of some sort, whether you call it that or not. I think there would be no harm for us to point it out, obviously, as an essential feature.
Senator Eggleton: I want to ask about the burden of costs, particularly on low-income people. I’ve asked this of a couple of other witnesses as well.
People in palliative care services can find themselves in hospitals, acute care beds; they can find themselves in hospices or long-term care facilities; or, of course, preferably for a lot of them, at home. But there is uneven coverage here in terms of government’s contribution to the cost of these. If it’s in the hospital, it’s covered under the Canada Health Act. But in some of these other facilities, part of the cost would have to be borne by the patient, and some of them find that very challenging to do. Yet, hospices or home care or long-term care facilities can be more comfortable for a lot of these people in palliative care, as opposed to being in an acute care hospital.
Governments will say they are contributing to long-term care facilities; the current federal government has put money into home care, et cetera. But in the case of Alzheimer’s and dementia, we’re projecting over the next 15 years that the number of people will double, so it’s hard to keep up with all of this.
Are there other ways that we can help to reduce the burden of costs? One thing I would ask you about specifically is if any of the hospices or long-term care facilities should be affiliated with hospitals and then bring them under the Canada Health Act. Is that one thing that is possible to do?
Mr. Chirrey: Currently there are $25 billion of unpaid home care in the country. We know that for cancer patients, in particular, 77 per cent of the cost gets shifted on to them when home care happens. Part of it is lost wages and part of it is paying for things that are normally in the health care system. I think we have to look at models that are working.
As we said earlier, it’s about the choice of where people want to be in order to receive their care, palliative or end of life. So it’s not just looking at the cost savings and saying we’ll just shift this all lower down the chain where it is much more affordable. We need to figure out ways, and I think it’s by looking at models. I don’t think we have a clear idea of how to do that.
We know that currently the benefit provided to caregivers has been extended, and that has been great, but the same has not been matched with patients themselves. I think that is one of the issues still.
Ms. Masotti: The Canadian Cancer Society is talking about the sickness benefit and the need for expansion. We were certainly thrilled that the government expanded the compassionate caregiver benefit, but we’re in a situation now where the patients receive less coverage and financial support than the caregivers themselves. That’s something that definitely needs to be looked at. But then we are looking at the EI system as a whole, and we know that will be a challenge and won’t be changed overnight.
Ms. Tardif: I think your question about aligning hospitals and hospices is an interesting one. I don’t have the answer, except to say that in servicing people living with dementia, who we follow through the journey of dementia, we see that it really doesn’t matter where they are in the health care system. Unfortunately, palliative care as a whole, because of fear, because of stigma and because of the challenges in education that we’ve already mentioned, all of those are challenged.
So I don’t know whether aligning hospitals in hospices will save money or reduce their burden of cost. Multiple studies show that home care is much more affordable than hospital care, but all of those players need to be part of the palliative care framework. That’s where I think there needs to be collaborative work to see what each of these elements needs to deliver, which pieces of this are they best suited to deliver, and ultimately, of course, which one is more affordable to invest in. It’s an interesting question.
Ms. Masotti: I would like to add one more thing about the caregiver benefit. This benefit was recently expanded, which we support entirely, but the uptake of some of these benefits is pretty low. We are in a situation where you have families and caregivers, and the last thing on their minds is how they are going to seek some of those financial support systems.
Again, I speak to education and campaigns. We need to let Canadians know that these benefits are in existence and that they are there for them to take advantage of and help with that financial support.
Senator Eggleton: The caregiver credit is non-refundable, though, isn’t it, which means it doesn’t go to people with very low income?
The Chair: Yes. That was one of the issues in our recommendation, that it become refundable.
Senator Seidman: Ms. Tardif, we know that palliative care research has suffered historically from a lack of strong public advocacy, limiting our ability to measure and report on palliative care services and practices across a spectrum of care because data is so limited. All three of you, in fact, mentioned this in your presentations.
I was interested to read that hospice palliative care for people with dementia was identified as a specific research priority in the 2010 Blueprint for Action by the Quality End-of-Life Care Coalition.
Could you speak to this research gap in greater detail, if that’s possible, and tell us where the research priorities are in this particular area going forward?
Ms. Tardif: I’ll be honest with you, Senator Seidman; I’m not familiar with that report. It’s a good catch for me. I will, in my six months being at the Alzheimer Society, have to read up on that. I’m sorry I can’t comment on that.
The Chair: That’s fine. There is no comment here either.
This is clearly an issue. It was identified in our last meeting as well: Which of the three types of care locations is best in these areas? We heard tremendous support for the hospice issue. The suggestion came up again as to whether that would work or not if it were tied into a hospital operation. One is always afraid that anything that comes under the Canada Health Act will soon disappear into that monstrous bureaucratic organization. Your costs will go instantly from whatever they were in the hospice to the full cost of care.
I will not go further than that. You all know well the difference between the care in the two locations at that particular stage. We want to move forward in a way that ensures the the best of the palliative care concepts emerge, not just the location of it, and I think that will be critical in this area.
We’ve gotten out a lot of important issues here today, so I want to thank you. I know from past experience that you come from organizations that have enormous experience in these areas, and we greatly value your being here.
Thank you to my colleagues for their questions.
(The committee adjourned.)