THE STANDING SENATE COMMITTEE ON SOCIAL AFFAIRS, SCIENCE AND TECHNOLOGY
EVIDENCE
OTTAWA, Thursday, October 19, 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 10:30 a.m. to continue its study on 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 invite my colleagues to introduce themselves, starting on my right.
Senator Doyle: Norman Doyle, Newfoundland and Labrador.
Senator Seidman: Judith Seidman, Montreal, Quebec.
Senator Eaton: Nicky Eaton, Ontario.
Senator Poirier: Rose-May Poirier, New Brunswick.
Senator Stewart Olsen: Carolyn Stewart Olsen, New Brunswick.
[Translation]
Senator Mégie: Marie-Françoise Mégie from Quebec.
Senator Petitclerc: Chantal Petitclerc from Quebec.
Senator Cormier: René Cormier from New Brunswick.
[English]
Senator Eggleton: Art Eggleton, Toronto, deputy chair of the committee.
The Chair: I remind everyone in the viewing audience that we are here today to continue our study of Bill C-277, An Act providing for the development of a framework on palliative care in Canada.
We have two panels today. On the first panel we have the Canadian Nurses Association, represented by Carolyn Pullen, Director, Policy, Advocacy and Strategy; from the Canadian Society of Palliative Care Physicians, J. David Henderson, President; and from the Canadian Geriatrics Society, Dr. Frank Molnar, President. Welcome back.
With that, I invite our panellists to start. Following your presentations, I will invite my colleagues to ask questions.
Carolyn Pullen, Director, Policy, Advocacy and Strategy, Canadian Nurses Association: Thank you, Mr. Chair and committee members, for the opportunity to speak today.
I am a registered nurse and director of policy for the Canadian Nurses Association. We are the national professional association representing more than 139,000 registered nurses and nurse practitioners from every province and territory across Canada. I am proud to say the CNA membership includes 1,350 nurses who have achieved CNA specialty certification in hospice and palliative care.
CNA is supportive of Bill C-277, An Act providing for the development of a framework on palliative care in Canada. In March 2017 we presented recommendations on the proposed bill to the House of Commons Standing Committee on Health. In follow up, most of our recommendations were adopted by the committee, and we continue to support the bill as it was passed by the House of Commons.
Today, I offer four recommendations to further strengthen a comprehensive regime for palliative care in Canada.
First, there is a need for greater emphasis in the bill on a palliative approach to care. I offer that for consideration.
We advocate for a palliative approach to care enabled by advance care planning. This evidence informed approach focuses on improving quality of life for patients with a life-limiting illness by reducing suffering through early identification, assessment and treatment of physical, cultural, psychosocial and spiritual needs. With the required education and training, a palliative approach to care could be taken in all health care settings by members of an integrated care team.
As you have heard from other witnesses, this could not only improve end of life experiences for patients and families, but it could improve the quality and sustainability of a publicly funded health system.
To further strengthen the bill, we suggest a revision to subclause 2(1)(a) as follows: The language would be: “Defines what palliative care and a palliative approach to care are.”
Second, we encourage the committee to support the development and implementation of national evidence informed standards for integrated palliative care.
At the moment there are no nationwide policies and evidence informed standards to ensure integration of the palliative approach to care across the continuum. In addition to not having a framework, there are no standardized and widely adopted methods to guide health care providers, including nurses, on when and how to implement a palliative approach to care.
The shortage of high quality, comprehensive health information also confounds the design and delivery of palliative care. Across jurisdictions we still lack consistent data definitions and interoperable data collection systems. Sharing and linking data to other health and social data sets is challenging, if not impossible.
Underserved populations, such as First Nations, Inuit and Metis, are not well represented in the data, which impedes our ability to understand, assess and improve care for these populations.
Without being able to follow and compare performance, provinces and territories have a limited capacity to understand whether, where and how to improve palliative care. National standards for integrated palliative care and comprehensive, high quality data would greatly enhance our understanding of system gaps and the impact on quality improvement initiatives.
Therefore, we recommend that subclause 2(1)(d) could be revised to read as follows: “Promotes research and reporting on indicators related to national evidence informed standards on palliative care.”
Third, CNA supports for the need to increase public awareness on palliative care via a national campaign that would include caregiver targeted information on current federal government programs.
Once legislation is adopted, the Minister of Health could play a key role in raising public awareness especially among patients and caregivers.
A recent report from the Canadian Partnership Against Cancer highlighted key factors to support a seamless patient experience. Nurses play an essential and central communication and navigation role leading and supporting care teams, including patients and families, and nurses are central in ensuring smooth transitions in care.
We have long known the most positive patient experiences occur when care is patient and family centred and models accommodate patient and family preferences.
On its own, the fact that the majority of deaths in Canada still occur in hospital, while the vast majority of Canadians tell us they would prefer to die at home or in a home-like setting, indicates there is still work to be done.
As an association we promote promising models for palliative care and are proud to support nurses in Canada to achieve specialty certification.
Finally, we support a key recommendation proposed by the Canadian Indigenous Nurses Association, CINA, in its prebudget submission to the House of Commons Standing Committee on Finance. Together we call on the federal government to provide $25 million each year over four years for improved home care services, which include palliative care, to address the needs of rural and remote indigenous communities.
Every level of government must support equitable delivery of services to Canada’s indigenous populations, including access to culturally safe, high quality health services on reserve and in rural and remote locales.
A sustainable approach would be for all those who care for patients at the end of life in the settings to be knowledgeable about and have the tools available to provide a palliative approach to care.
We also support CINA’s recommendation that indigenous knowledge and healing practices be incorporated into the service delivery framework and the management of those with chronic disease and requiring end of life care. We are currently working with CINA to find the best ways to incorporate indigenous knowledge into home care services and delivery.
In closing, I emphasize CNA is a strong advocate for high quality palliative care and a palliative approach to care accessible to all Canadians regardless of where they live and in settings that best suit their individual needs.
Thank you. I look forward to your questions.
The Chair: Thank you very much.
J. David Henderson, President, Canadian Society of Palliative Care Physicians: I think it is good to share a little background, seeing as there is quite a strong maritime influence on your committee. I am a palliative care consultant. I went to medical school in Newfoundland. I grew up in New Brunswick. I currently work and live in Nova Scotia.
The Canadian Society of Palliative Care Physicians represents over 500 physicians working as consultants in palliative care or as family physicians and other physicians who have a special interest in palliative care.
This group makes up the physicians who are very much involved with teaching and leading many of the palliative care programs from across the country. It gives us good insight into what is happening in the academic centres and every day around the country in rural, remote and urban areas.
I will not repeat several things because Ms. Pullen did a great job outlining some of the concerns about standardization and guidelines needed throughout the country to level the playing field.
I will remind everyone of two things. Our mortality rate is still 100 per cent. There was that case about 2,000 years ago in the literature that talked about that one individual, but since then it has been at least 100 per cent.
We are in this aging demographic curve. In 2011 about 14 per cent of us were 65 or older. Around 2025, at which time I will be included in the 65 and older group, we will be at about 20 per cent at that point. It will go up to as high as 25 per cent by 2061, which will include one of my children, as I look forward.
We need not to be thinking just about today. We are into that curve now, and that will exponentially grow over the next 30 or 40 years. What we do today will not only impact our lives and deaths but our children’s and our grandchildren’s as well. We have to be aware of that.
I will mention a few of the current gaps that have already been identified. There are human resource issues. There are many places around the country that still don’t have good access to even primary care, family physicians and home care. When you break it down even further, there are that many more people who don’t have access to physicians, nurses, social workers, pharmacists and so on who have some extra training in palliative care to support the primary care folks who are doing most of the legwork.
Another thing to remember as I talk about that aging demographic is that we are also included in that aging demographic. Will we have enough human resources to even replace us as we retire and die to fill up those gaps?
Turning to public gaps, access has been an issue that was identified across the country. Access to home care is important for all communities, including our native communities. With living longer and older we are finding that the complexity is growing all the time as well. Studies are indicating that as most people over the age of 65 get older, they will have two or more chronic comorbidities. They will have a couple of conditions that can compound and make life more challenging as we get toward the end of their lives.
With that also we have to look at our caregivers. As we are living older and starting to approach the time when we will be dying, usually our partners, our families and our caregivers are aging too. In a country where our families tend to be dispersed, it is not uncommon to have one family member in their advanced 80s or 90s with a partner also in their 80s and 90s. That is another challenge. We have to be ready for trying to provide and to help accommodate that caregiving responsibility.
As was said, we need national indicators, standards, reporting and oversight to help level the bar here to make a good system that will be sustainable and effective across the country.
I will make one comment about medically assisted dying. It is actually not a choice when there is no other choice. It has been documented in all the research and studies done throughout the development and legalization of medical assistance in dying that it was virtually mandatory that we have a good, sustainable palliative care system throughout the country so that people didn’t have to make choices because they didn’t have access to good quality palliative care.
Approving and developing this bill can ensure that palliative care be provided and meet federal government’s requirements, too. First Nations people, Inuit, serving members of the Canadian Forces, eligible veterans, inmates in federal penitentiaries, and some groups of refugee claimants are all people who rely on the federal government to ensure that we provide good quality care.
The Canada Health Act states that all Canadians should have universal comprehensive access to care. The approval of Bill C-277 would ensure that Canada sets standards for access to quality palliative for all ages, including children. We need to make sure that we do not ignore that population as well in all geographies and all diagnoses.
We try to emphasize that much good work has been done in the country and the federal government has been part of that in funding the development of The Way Forward initiative. That provides a good framework for how a program or national guideline can start to work, but there does need to be investment in oversight and implementation of those kinds of guidelines. It is shown that we can have high quality, cost effective service delivery that can help Canadians with life-threatening illnesses.
For most of us this is common sense and we know it needs to happen, but someone has to pay the bills at the end of the day. So we, the CSPCP, submitted a report to government last year. It can certainly be made available for you folks. It is on our website. It looked at the cost effectiveness of palliative care. Throughout the literature it has been shown that it can reduce the cost by up to 30 per cent. It can also free up scarce resources, such as intensive care beds for people who don’t necessarily need to be there.
We are recommending that Bill C-277 move forward. There needs to be some funding attached to it to some extent. There needs to be that oversight by the federal government to help ensure that this moves forward.
We don’t want to see the development of a large bureaucratic organization. So much good work has been done that I think it needs to be implemented by a small, competent and nimble group that can pull in all key stakeholders at the appropriate times to ensure we can make it work.
I will finish there, and I am open to questions.
The Chair: Thank you. I note with great interest the irony of steering the rudder on the ship. For those who know the story, they will understand immediately.
I now invite Dr. Molnar to present.
Dr. Frank Molnar, President, Canadian Geriatrics Society: Thank you for the opportunity to contribute to an issue that touches on the lives of all Canadians. I will provide a complementary approach by discussing those who refer to palliative care and how we can better support palliative care.
As a specialist in geriatric medicine I care for seniors in the years, months and days before they choose palliative care. The lead-up to palliative care, which includes advance care planning and goals of care discussions, cannot and should not be divorced from the palliative care framework. These preceding discussions create the foundation for the palliative care experience.
Prior to the involvement of palliative care, we encounter three major challenges. The first is that patients and families are not prepared to engage in advance care planning and palliative care discussions. We have excellent resources for advance care planning, such as the Speak Up toolkit at advancecareplanning.ca.
Unfortunately, patients and caregivers have told us that they do not know how to use advance care planning resources. They can read the material but do not know how to initiate the conversations. They do not know what to say. They also find the material is not disease specific enough. There is little to no information regarding common diseases such as dementia, heart failure and chronic lung disease to allow them to anticipate and discuss prognoses and the expected symptoms. The information is very generic.
Some potential solutions for consideration include developing an enhanced patient and family education strategy regarding how to hold advance care planning discussions. These skills eventually translate into skills in holding end of life discussions. The skills are one and the same.
Another potential solution is working with other specialties to develop disease specific modules for common diseases people die of, such as dementia, heart failure, chronic lung disease and cancer, and then integrating these modules into advance care planning resources such as Speak Up. That is the first challenge.
The second challenge is that physicians themselves are not prepared to engage in advance care planning and palliative care discussions. Physicians are poorly trained to recognize the final stages of diseases. Consequently, they often do not initiate or review advance care planning in a timely manner.
In hospital, we often don’t recognize that a patient is dying in front of our eyes. We wait so long that the person is in their final days before it is recognized. There is no time to negotiate an excessively complex process of setting up community palliative care to organize a plan for the patient to die at home, surrounded by their loved ones. The process becomes very rushed, and families are shocked and traumatized.
Some potential solutions might be developing an education strategy for health care providers regarding how to recognize when patients are entering the final stages of a disease. We can provide an article on heart failure that would illustrate the point. The recognition that a patient is in the final stages should then trigger more detailed and informed advance care planning and goals of care discussions.
For this to happen, we need two things. We need provincial advance care planning and end of life family conference billing codes to incentivize physicians to hold these detailed and difficult discussions without rushing. We also need online education modules and real-time courses to train physicians regarding how to hold advance care planning and end of life discussion. These educational resources need to be accredited by the Canadian College of Family Physicians and the Royal College of Physicians and Surgeons of Canada.
The third challenge, which you have already heard, is that there is inadequate training in palliative care for health care providers caring for dying patients. In hospital, most physicians are not trained to provide palliative care. Consequently, we often use the wrong medications and/or the wrong doses. We use doses that are too low for fear of hastening death. This commonly results in unnecessary suffering of patients and family members.
Some potential solutions might include developing an approach that copies the cardiac life support approach. We have basic cardiac life support, or CPR, and we have advanced cardiac life support involving drugs and intubation.
Can we similarly develop basic palliative care approaches for the first hours and days until the palliative care team can arrive to provide advanced palliative care?
Can we ask that every service or ward that cares for patients at risk for dying have adequate numbers of palliative care champions, people certified in basic palliative care, and that we have adequate numbers to ensure 24-7 coverage?
For specialists still in training, can we ask the Royal College of Physicians and Surgeons of Canada to integrate the need for basic palliative care training in the training and licensing requirements of all specialists who will practise in fields where they will care for patients who are dying?
For practising physicians who have already passed their exams and who don’t need to pass licensing exams, can we develop accredited online education modules and real-time courses to teach basic palliative care?
A complementary approach might be one borrowed from protocols we use in the hospital. We have protocols for different issues such as pain. Can we develop basic palliative care protocols that describe the common drugs to start that might be tailored to a specific disease such as heart failure and describe the doses to overcome the knowledge gap and the reluctance to use higher doses for fear of hastening death?
Nothing replaces the contributions palliative care teams make. They go far beyond medications. They include the compassion, knowledge, wisdom and experience of the teams that is reflected in their interactions with patients and families as they counsel and support them. The ideals described are not intended to replace advanced palliative care but rather to ensure that some basic palliative care is provided while awaiting the palliative care team to arrive, as well as to ensure the palliative care teams have capable partners to work with. This does not negate the fact that we need greater investment in palliative care, as the previous speakers have described.
I hope some of these upstream ideas from a specialty that refers to palliative care will be helpful. Thank you.
The Chair: I realize that many on the committee may not understand my reference to the ship, but this is the Bluenose which just underwent a major renovation in Nova Scotia. The rudder was causing remarkable difficulties. It is a very apt note here, so I wanted to point it out.
We have three witnesses. We will use one question per round. Please direct your question, if possible. Otherwise I will point to one of our witnesses.
After the first person has answered, the other witnesses will have an opportunity to come in. Only do so with something new to add, please, as I would like to get as many questions on the table as possible with the expertise we have here.
Senator Eaton: Ms. Pullen, we realize there is a shortage of generalists who are trained in the geriatrics field. We also heard yesterday about some really interesting programs that various provinces are doing, such as Alberta and B.C. As the chairman says, the problem in the country is that everything is so siloed between provinces and jurisdictions.
Have you thought about how to break down those silos and share the various best programs among all of us, all provinces and jurisdictions?
Ms. Pullen: Part of the role of a national professional association is to achieve goals such as those. We really act as a hub in a hub and spoke model. We work collaboratively with the jurisdictions that we represent.
An example of where we have tried to identify promising or best practices and disseminate them as broadly as we can, would be the example of specialty certification for nurses. In 21 different specialty areas, the CNA offers certification exams. One that has good uptake would be the one in hospice palliative care.
That is one example of how we can encourage nurses who are working in an area where they frequently interact with patients at end of life to specialize in that area and to achieve what we would view as a national level standard that is as evidenced and informed as it should be.
Senator Eaton: Do you share those programs? This is what I am asking. Do they cross over jurisdictions?
Ms. Pullen: Yes. As an example, any nurse in Canada who qualifies to take those exams is eligible to take them.
Beyond that, as a national association we also have many free online and in-person opportunities to learn and to share information. In fact, it’s not just available to nurses. Right now in CNA’s current context many of our resources are available to all health care providers.
That is an essential consideration as we have this discussion because in some arenas you will see resources that are restricted to only one discipline. Whereas they may have received federal funding to develop those programs or resources, that seems to contradict an aim to raise the bar across all health professionals so that you could have best practices, let’s say, in integrated palliative care espoused by all team members.
We know those examples exist in pockets across the country where we can identify and share them. We do our best to share them across as many disciplines as we can reach. We try to remove artificial barriers to access to that information and really promote those models. We are very supportive of that approach and, with the resources we have, we do everything to achieve precisely that.
The Chair: Dr. Henderson, do you have a quick comment?
Dr. Henderson: Yes. I want to make a comment specifically to that. There is an organization based out of Ottawa called Pallium Canada which has developed excellent learning materials that are available right across the country. The process was developed out west and then brought here to Ottawa, where the home base is now. They have had some federal funding to help develop these educational materials. They are designed to be core competency based. They are for nurses, physicians, social workers and pharmacists.
There is LEAP, which Learning Essential Approaches to Palliative and end of life care. There is Core, which is the basic concepts that everyone should have coming out of their professional schools. Now they’ve gone on to actually developed a program called LEAP long-term care, which focuses on long-term care facilities. Part is dedicated toward long-term care nurses and the physicians who work in those facilities, but there is a separate part that works in conjunction with that, focusing on CCAs or PSWs, depending on what terminology is used in each province. They make up the vast number of people who are working in long-term care.
There are wonderful national tools like these that are available across the country. If anyone wants to look at it, pallium.ca is the website.
The Chair: Dr. Molnar, do you have a quick comment on this question?
Dr. Molnar: I think there are great resources. What we need are incentives to get physicians, especially those already in practice, to start using them. There are far too many specialists practising in areas where their patients are dying, such as cardiology and respirology, who really don’t have any experience with palliative care, advance care planning or goals of care conversations. There’s a huge gap. I am not certain this has really been taken up by the Royal College. It is definitely needed, and we now need to find a way to integrate it and to incentivize it.
Senator Petitclerc: Thank you so much for your presentations and involvement.
All of you talked about gaps and challenges. Perhaps I will hear from Dr. Henderson first. The bill calls for evaluating re-establishment of the secretariat which was there from 2002 to 2005, if I am correct. I want to hear about how you see that and what you think about the possibility of re-establishing the secretariat.
Dr. Henderson: I think the secretariat would be the central person or location that brings together some of the key stakeholders. Again, our idea would be to have the person responsible at that federal level bring in some of the key organizations from across the country, the national organizations, to start looking at an implementation model, as opposed to starting from scratch and redeveloping everything, and then pulling in other key stakeholders as you start to move forward.
To me, other key stakeholders would be asking the provinces. The nice thing with our national organizations is that we have people who are working in all the provinces. Within our provinces we are developing relationships with our provincial governments. Truly, it is important to identify those champions in each province and bring them to the table so that it is not a federal body telling the provinces what to do. It is federal group working with people from the provinces to say, “It’s time that we do this a lot better than we’re doing it.” Again, we know we are in that curve of aging demographics. There is no time to waste. We are already behind the ball. That’s what needs to happen.
Senator Eggleton: Thank you for your presentations. I will direct my question to Dr. Molnar, but I would certainly be happy to hear everyone’s view on it.
The previous federal government put in place The Way Forward initiative, an integrated palliative approach to care which provided some $3 million over three years. A framework was created and I think that is where the secretariat comes into play. It was part of that.
How do we move this along to a further stage? Rather than just reinventing this framework, how do we take what we’ve learned from that exercise and build upon it to make this a much more fulsome implementation of a palliative care program?
Dr. Molnar: I think my fellow speakers might be more qualified to answer the question in greater detail. I would come at it from a hospital perspective and ask what the drivers are. The drivers are: Can we decrease length of stay? Can we save money? We can. The research shows that if you look at palliative care as a cost saver and a resource saver that can be reinvested then you have a driver that can be integrated into hospital function and into ministry function.
If the CEOs of all the hospitals get a sense this can save money and we can move people to where they want to spend their last days, then I think you’ll have some traction.
Ms. Pullen: I would add that it’s an evolution. I don’t view past initiatives that have taken root and then gone dormant or haven’t progressed as rapidly as failures. They were steps.
When I graduated from nursing in the early 1990s we weren’t talking about palliative care. It wasn’t part of the curriculum at all. Yet, here we are almost 25 years later and it’s an important part of the conversation that has been advanced by the debates around assisted dying and changes in demographics, et cetera.
I would see the next step as building on the work that has already been done, but I think it can be done in a lean way that can rapidly advance us from where we are at right now. I think the signals are all very good. You have the national organizations and stakeholders across the whole health care and social services spectrum aware of and talking about palliative care. It’s a great time to take advantage of a crisis and complete the work or take very substantial strides forward in making palliative care part of the lexicon and the practice of all health care practitioners regardless of the setting.
Dr. Henderson: I’m glad Senator Eggleton brought that up because it is a key piece of work that has been done and can lead the way.
There are some key things that we need to focus on. The way forward is with the skeleton. We need to put the meat on the bones, and there are a few key things we need to get on with right away.
As Ms. Pullen said, in 1990 there was very little palliative care education in nursing school, as in medical school and so on. Unfortunately, today, despite the fact that core competencies have been developed for nursing, social work, medicine and spiritual care, the challenge has been getting those integrated within all the schools and seeing new graduates come out with those basic skill sets. That has been a huge challenge. We know that in medicine, nursing, pharmacy and so on. That is something we have to do.
At this national level we could reinforce those core competencies. We can make sure our schools recognize that as professional educating bodies they’re not meeting the needs of Canadians. These core competencies have to be integrated within the school systems to ensure that all new people coming out will have education in those core competencies to be able to deal with it. That’s the palliative approach. We need everyone to be taking responsibility for it.
Another thing needs to happen at the federal level. We need to look at human resource issues across the country. We need to upgrade everyone’s ability to do this kind of work, from nurses to social workers. There is a big movement on now about something called compassionate communities, which will look at our communities becoming more responsible for palliative care too. There needs to be a structure in place to look at what human resources we need to support these people who are doing it.
I will talk a bit about those specialty teams. Our goal is to encourage all family doctors, all gerontologists and all cardiologists to do their part, but they need the support of that palliative care team for education, for guidance, to be able to ask questions, and do shared care in really complex cases to provide the care that’s needed.
In my opinion, and with the formula we’re working on at the national level, nursing will be key. The programs I’ve worked on show the nurses as taking the leadership in a lot of this role, especially with providing the palliative care approach. Nurses are used to working efficiently with physicians to make it happen on the ground and move it forward.
Senator Seidman: Thank you all very much for being here and for your presentations. I will address my question to you, Dr. Henderson.
We have heard that this bill isn’t perfect. Of course, no bill ever is. However, this bill requires consultations within six months, the development of a framework and the reporting back of that framework to Parliament within one year of the bill coming into force. I say all this because we have heard from people about potential amendments and things of that sort.
I do note that the Canadian Society of Palliative Care Physicians recommends the acceptance of this bill. In fact it’s on the front page of your presentation to us, Dr. Henderson. You say here that approval of the bill would ensure that Canada sets standards for access to quality palliative care for all ages, including children, all geographies and all diagnoses. It’s really important for us to hear from you as to why you are saying to us we must approve this piece of legislation.
Dr. Henderson: Great question. I’ve talked a bit about a sense of urgency. I like the comments about some of the amendments. The emphasis of the palliative approach is key. I see that within it as well. As soon as you pull the stakeholders together, that will be a huge focus. We can’t say we need a number of specialty teams that will look after everyone. That’s not wanted. It’s not reasonable. It makes no sense.
The Way Forward documents have shown us a great strategy on how to do this. What we’re lacking is the guidance and support to pull it together, the education that needs to happen for the human resources, and the education that needs to happen for the public so they can understand what we’re talking about. We can do that with some public awareness, but you still need to have boots on the ground out there in the communities sharing, talking about this, and educating not only other health care professionals but educating our communities as well.
This is the place to start where we can really make a big impact. People are as aware of palliative care as they’re ever going to be because euthanasia and assisted suicide became legal. We knew for years that would be the only thing that would make the public pay any attention because no one wants to talk about death and dying in our culture and in our society. It has been a taboo. We’re in a very disposable society where people don’t even want funerals anymore. Let’s get this done. You’re not supposed to grieve. This should be over with.
Part of what we need to do is a culture shift because life doesn’t work that way. It’s a huge endeavour but there are many good things that can happen and many good things already happening. As we discussed earlier, pockets of things are happening in different places around the country. How do we capture that and make it happen right across the board?
I work in a smaller area. It’s a vast country. We need to be flexible, nimble and able to adapt. We need to look at technologies for reaching people who are remote. You will not have a specialist in every town. People need access to information. Again, home care programs will be important. They need to be linked with the palliative care program so they know who to call when they run into situations.
This is all very doable. It doesn’t need to cost a lot more money. We need to invest in the human resources. Again, the studies show that we can be cost effective with this. That’s important, but more important is that people have an improved quality of life. Their symptoms are better managed and they’re able to experience a good death. Our culture starts to change by saying that death isn’t something that needs to be feared and avoided at all costs.
Ms. Pullen: I agree with the statements made. I have nothing to add.
The Chair: I see that Dr. Molnar has nothing to add.
Senator Stewart Olsen: I view this bill as an aspirational bill, but I wanted to talk with you particularly, Ms. Pullen, on the thought that perhaps you would be ready for when the bill comes into force by perhaps hiving off a group of researchers in nursing and other organizations as well and by presenting doable ways to accomplish the goals in the bill.
Going back to Senator Eggleton's question, no matter how many meetings you have, you need to have people coming forward with concrete proposals. I lean to nursing because I think nurses, generally speaking, have common sense to propose good ways. To serve our rural and far north areas, we will need to come up with some innovative thinking.
We can say all we want to say about having to do this and this would be wonderful, but we need ideas and out of the box thinking, which each one of you, I’m pretty sure, can provide. Have you given any thought to the Canadian nurses taking the lead on this?
Ms. Pullen: I must say we have given tremendous thought to this because this is how the CNA and other like organizations respond in these types of situations. A good example would be following the MAID legislation. We convened a group similar to what you described. To a certain extent it was multi-disciplinary but definitely the expertise was tapped within the nursing field and developed a national framework for the provision of MAID within the nursing profession.
I have to say that the uptake and the reach of that document has transcended the borders of Canada and the profession of nursing. We’re very proud of that work. It has had influence and impact, which is precisely what we needed.
Whether or not this bill goes forward, we will continue the work in the palliative care arena that we have been active on for many years because nursing and palliative care really go together. It’s as old as the hills. I was reflecting, as my colleague was speaking, that my mom is a volunteer in a local hospice. She and all of her co-volunteers are retired nurses. It’s such a progression.
In short response, that would be precisely the tactic that we would take. Hopefully, the legislation will pass. In the absence of the legislation, the work would probably progress. We have the incentive, the experience and many of the resources to make it happen. Especially when you consider rural and remote locations, those sites pose some of the greatest challenges. The nurse practitioners provide the bulk of the primary care in the North, serving over three million Canadians as primary care practitioners. Many innovative practices are already under way. They access specialists remotely or they have developed specialized expertise on their own and share that with colleagues. Use of technology and use of other strategies so that good palliative care is as widespread and high quality as can be, will certainly remain one of our goals.
The Chair: Dr. Molnar, do you have any comment?
Dr. Molnar: The Canadian Geriatrics Society certainly wouldn’t have the resources to lead this. What we do have is content expertise in some populations that are underserved: frail seniors, medically complex patients who have four or five active diseases, and persons with dementia. We have the content expertise. We’d be happy to partner and collaborate with larger organizations that could lead this.
Dr. Henderson: Our organization, as well, has a group of volunteers that run it. That forms a challenge, but even with that we’re working on various things such as an integrated staffing model for palliative care, which really doesn’t exist anywhere in the world right now. That has been a huge challenge. How many people do you need to do this kind of work?
It’s based on a model that has been piloted and trialled in Canada. We see that it can work. It’s just getting to the next stage. We’re in the process of doing some more consensus building around that at this time.
To speak also about further education, we’re forming a work group to focus on the core competencies for specialist physicians, non-family physician specialists, the cardiologists, nephrologists, neurologists and so on who will be working with people with terminal illnesses and helping the Royal College actually start to integrate some of that within their education as well.
So far the Royal College has been very open and interested in that, which is wonderful. The college has become much more open to that concept. There is now the subspeciality in palliative care that started in 2017. There has been good movement on that. There is recognition within the college that this is something that’s needed and is moving forward.
[Translation]
Senator Cormier: Ms. Pullen, in your presentation, you talked about the delivery of services including access to culturally safe high-quality health services. I would like to know how service delivery takes into account cultural considerations and how that translates into the training available to service providers and caregivers.
Ms. Pullen: That’s a great question. In fact, we are in talks nationally on that very subject.
[English]
We are very proud that we have a partnership accord with the Canadian Indigenous Nurses Association. In partnership with them and with our membership, really quite embedded one with the other, we are highly attuned to the need to improve cultural safety within health services, social services and other services in Canada. To that end, we are working hand in hand with CINA. It is an indigenous-led organization that really guides the CNA on understanding better what it will take to develop a health care system, including a palliative care component, that really ensures cultural safety for patients and families and espouses a sense of cultural humility among the care providers who are interacting with patients and families every day.
To support that we do the obvious usual structural things like position statements on the subject, which describe what we mean and knowledge translation around those tools to try to educate and share information. Beyond that, there needs to be a much more significant investment in awareness, development of competencies and a true cultural shift in understanding among mainstream health care professionals around what is required on our behalf to deliver culturally safe care.
I will add that we work really closely with the most knowledgeable experts within the Canadian Indigenous Nurses Association to help us to understand what is missing currently in curriculums and in other resources that reflect indigenous ways of knowing, and what is missing in the way care is actually delivered.
Good examples that come to mind in the palliative care context would be things like: Do you have policies in institutions where people can smudge and the fire alarms won’t go off or you won’t be prevented from doing it? There are beautiful examples from the First Nations Health Authority in British Columbia where they have been able to set up wall tents outside the concrete walls of the physical plant so that people can spend their last days in precisely the setting that is most comforting to them and their family, in light of the fact that specialized care may not have been available in their remote community and we’ve asked them to move in order to spend their last days in a completely foreign setting.
There is an enormous amount of work to be done. We are really trying to demonstrate that we respect and don’t have the arrogance to believe that we know all the answers. We know that our sister organization, the indigenous nurses, the indigenous physicians and other similar groups are really the wisdom we have to tap to understand this better.
Dr. Molnar: I have nothing to add.
Dr. Henderson: I agree 100 per cent. I will mention another great organization. The Canadian Virtual Hospice has done a lot of work around indigenous health and palliative care. Some programs on cultural competency have been developed through the Canadian Virtual Hospice in partnership with Pallium as well.
We are trying to educate our health care providers more around that. That being said, there are variations right across the country. One size doesn’t fit all. The key is having the people in the local environments meet to start having open discussions around how to better we can support them in their culture. Don’t be afraid to ask those questions.
Senator Omidvar: My question is on the same line. I just saw the statistic, which is surprising even to me, that 28 per cent to 29 per cent of Canada’s seniors are immigrants. That means they weren’t born in Canada or did not have Canadian citizenship when they arrived. Most of them live in Toronto and Vancouver.
There is another fact that I think plays into this, and you know this. The older you get, the more pain you have and the more likely you are to lose your second language. Language attrition happens with age and with pain and suffering. Could comment on the public policy response to the huge representation of immigrant seniors in the Canadian senior demographics in the particular context of language and services in a language? Is that public policy response contained in Bill C-277? Can we see some response in the bill?
Ms. Pullen: That is a very important question and I’m not sure I’m fully equipped to give you much information. What my mind goes to as you are speaking is a separate issue that is a confounding factor in your question. Let's say not only 30 per cent of Canadians are originally from another country, but that proportion would also translate to the nursing profession. We do not have perfect systems in place right now for migration of nurses into Canada to achieve their registered nursing status.
There are challenges in the system that we continue to work on. Not only do we want new Canadians to have the viable employment and excellent opportunities, they’ve come to Canada for. They are representative of the different languages and cultures that we care for in hospital.
There are a number of moving parts here. I don’t want to bring information to the table that is inaccurate or misleading, but I would say you are asking a very important question. Having a nursing workforce or a health care workforce overall that is reflective of the Canadian population as it exists is very important.
Dr. Molnar: The concept of losing language is interesting. It can happen for a number of reasons. One of the reasons is dementia. One of the earlier signs of dementia is that immigrants will lose their French and English and revert to their native tongue. Their dementia is often diagnosed much later so can no longer engage in those advanced planning goals of care, end of life discussions, so that creates a lot of challenges.
We need to think about dementia as a terminal illness. It’s often not thought about in those terms. The Royal College isn’t thinking of it in those terms, as far as I know. We need to start folding that in because dementia is fairly unique. Any situation where you lose language is fairly unique because you cannot engage in the important discussions.
Dr. Henderson: I’m not qualified to comment on this a lot, but I will say there has been development of a lot of good evaluation tools and communication aids. There’s a tool used across the country called ESAS, or the Edmonton Symptom Assessment System. That has been translated into many different languages. Some of those things are happening, but I don’t think they are happening consistently enough.
Ultimately, with the bill addressing the needs of all marginalized participations within the country, has to be part of it. There is an ongoing program Ottawa called Humanizing Health Care. A speaker from Denmark was talking about long-term care facilities and things to enrich the lives of people there, but within that video they talked about anybody in a long-term care facility now essentially becoming a marginalized population in many regards. Often families are not coming to see them anymore. There are people who never leave the building.
Just being in long-term care can place you in a marginalized population, let alone losing your ability to communicate. It has to be part of the bill and the overall approach to any palliative care strategy.
The Chair: Once again we’ve heard a wide range of existing issues of which our expert witnesses are aware. They have been looked at or and understood to be issues that have to be dealt with. They have been thought about in detail. There is a need for Canada to develop a very clear strategy that incorporates all the groups. Of course, it has to start with the provinces and the federal government working together, along with the major subgroups within these issues.
In our study on dementia I’m struck by the need to increasingly have a health care responder force that is aware of the issues and how to deal with them in an overall context. That translates back, as you’ve described here, into the training of health care professionals from the beginning. I’m beginning to think of the tremendous amount of knowledge that a modern health care worker, particularly on the front line, will be required to have.
From our recent study on artificial intelligence I can see there is not enough time to train individuals at the beginning in everything. There may be a way, through our access to intelligent understanding of recognition of symptoms and so on, to add to the amount of training that can be there which will give the trained health care workers the opportunity to use tools that will help them very quickly.
Getting back to reality, that is the current real situation and what we can do, you have shown that there is so much knowledge on the ground today that if we can get a strategy under way, it should move forward very quickly, especially if it does the proper thing and interacts with groups like the ones that are represented here today.
I want to thank you on behalf of the committee and once again thank my colleagues for their questions.
On our next panel we have HealthCareCAN and the Ontario Long Term Care Association. I will go right to identifying witnesses and then we’ll get on with the presentations and questions by the committee.
I am pleased to see, from HealthCareCAN, Jennifer Kitts, Director of Policy and Strategy; and Dr. Jill Rice, Interim Medical Chief, Department of Palliative Medicine, Bruyère Continuing Care centre.
Jennifer Kitts, Director of Policy and Strategy, HealthCareCAN: We are here to support Bill C-277. For those who may not know us well, HealthCareCAN is a national organization that represents Canadian hospitals and regional health authorities. Ensuring a high quality palliative health services for all Canadians is a key priority for our organization and all our remembers.
As we all know, far too few Canadians, indeed only about 30 per cent, have access to high quality palliative care when they need it. This challenge is particularly acute in rural and remote areas, as we heard today.
In 2016, HealthCareCAN made numerous submissions to the government with respect to Bill C-14, the medical assistance in dying bill, including to the Standing Senate Committee on Legal and Constitutional Affairs. In all of our submissions, similar to national associations and stakeholders across the country, we strongly supported the government’s commitment when it introduced Bill C-14 to improve palliative care. We see that as part of this initiative.
We support increased federal investments in and enhancements of high quality palliative care services, and we see Bill C-277 as an important step in support of this goal.
For us, palliative care means not only more appropriate care but, in many cases as we heard today, more economical care. The top priority for our Canadian health leaders from our hospitals and regional health authorities is the provision of high quality patient-centred care.
At the same time, many of our hospitals are coping with reduced health care budgets. We know that good access to palliative care is both the right thing to do and makes economic sense.
I am pleased to be here with Dr. Jill Rice from the Department of Palliative Medicine at Bruyère Continuing Care. She is an expert in this area and will continue our presentation. I will now turn the floor over to her.
Dr. Jill Rice, Interim Medical Chief, Department of Palliative Medicine, Bruyère Continuing Care, HealthCareCAN: I want to thank HealthCareCAN and Bruyère Continuing Care for asking me to express their views.
Bruyère Continuing Care is a local organization in Ottawa that was founded more than 170 years ago. Palliative care has been fundamental to its work for most, if not all, of those 170 years. It is also a core site of the division of palliative medicine of the University of Ottawa, so we are an academic site in an academic centre.
I have worked as a family physician in remote and semi-rural Newfoundland and small town Ontario before doing specialist palliative care level training. I now work exclusively in palliative care. It works in many settings. In all of the settings there has been huge variability about access and quality of palliative care comfort among my colleagues and providers.
Some of us obtained foundational training in palliative medicine early in our careers as part of our family medicine training but many did not. That inconsistency leads to a lot of variability and access to care and knowledge.
A national framework can help. It outlines the development of those educational and training needs. Having them identified is the first step to having them embedded in accreditation mechanisms for hospitals and health care education societies. Once we have identified in the medical schools and training programs, then we can put teeth into enforcing them. That is an important first step.
If all health care providers have a solid foundation in education on palliative care, it will address a lot of the issues of geography. If every specialist, family doctor, nurse and physiotherapist has some founding understanding of palliative care and the ability to identify patients with those needs. Even in a tiny town in rural Newfoundland like the one where I was I could identify those patients and knew when to reach out because I was trained to have that recognition. I could start with the recognition and conversation. If we embed them at all levels of health care, that will take us a long way to addressing rural and remote issues.
There is a lot of appetite. We cannot meet the need requests we have from health care students for education and training in palliative care. We don’t have enough space and people to train. There is a huge appetite.
I would like to see the education targets expanded further. Right now, it mentions for health care providers; but in other countries there are education curriculums in palliative and end of life care at elementary and secondary school levels. That is part of shifting our cultural views and attitudes toward death and dying, not only targeting health care providers but all of our children and all our people so that death and dying get incorporated into their understanding. Our children and adolescents experience death and dying, but we often don’t teach them how to cope with it.
The second piece that has now been recognized is the need to develop systems to promote access to medical specialty in core specialties like cardiology and respirology, let alone something that is a small specialty. We need to develop systems to promote access. We are piloting locally a pilot in telepalliative medicine so that we can potentially have specialist access to telemedicine. I work with a combined nursing/nurse practitioner team, which allows us to reach a much wider geography.
Lots of good initiatives are under way. Extending the framework, the elements that talk about research and data collection will help us figure out those ways. We have key members of our team focusing on data collection and strategies for data collection now among our academic group. Those things will help us identify ways to reach niche areas with specialized access.
Currently, when we look at the research, the standard of practice is for an interprofessional health care team. Unfortunately in many ways for functional and funding reasons the team is limited to doctors and nurses. Access to other members of the team, especially in community settings, can be very limited. Ways to improve that true access to team would be important.
Another issue we face is transportability. If I have a patient who wants to come from British Columbia to Ontario for end of life care, we have transportable health care but it only applies to hospitals and doctors. I can’t access them home care until the three-month waiting period has passed. Three months when you’re near the end of life is an insurmountable barrier. The framework could help address some of the issues of transportability across country for things like palliative care where those home care limits are critical.
The framework shows great potential. How we add the meat to the framework will be important in the development of that framework, but it gives us a great opportunity to start to create the structures that will allow us to address some of those issues.
The Chair: I will now turn to the Ontario Long Term Care Association. Welcome back to our committee, Candace Chartier.
Candace Chartier, Executive Chair, Ontario Long Term Care Association: It is great to be here again. I thank all senators for investing their time in this incredibly important study.
I have the distinct pleasure of serving the long-term care sector in two different capacities. As executive chair of the Canadian Association for Long Term Care, I serve a national organization comprised of all provincial associations and long-term care providers that deliver publicly funded health care services for seniors across Canada. CALTC members represent care providers delivering home support services as well as care for younger disabled adults. Additionally in the province of Ontario I serve as the chief executive officer for the Ontario Long Term Care Association.
Today, we are the only association that represents the full mix of long-term care operators, private, not for profit, charitable and municipal. We represent 70 per cent of Ontario’s 630 long-term care homes located in communities across the province. Our members provide care and accommodation services to over 100,000 seniors each year.
Seniors today are the fastest growing demographic. In the next few years seniors will outgrow our youngest for the first time in our country’s history. The senior's population grew from 8 per cent of the total population in the 1970s and is now on track to make up 25 per cent of it. Coupled with the challenge that we face with the sheer number of seniors who will need assistance, residents in long-term care homes are living longer. They are entering our homes at a later stage of life with much more complex health issues and are much more physically frail. The number of residents with dementia continues to grow as well as seniors with other health challenges.
We know that 9 out of 10 residents have some cognitive impairment. One in three is severely affected. The vast majority of residents have multiple chronic conditions that have seriously compromised their health. Almost all need some level of assistance with activities of personal hygiene, dressing and eating.
Since 2010 the proportion of long-term care residents with Alzheimer’s and other dementias have been growing steadily with two of every three residents now affected with these diseases. As you can imagine, the population in long-term care is very specific: our society’s most vulnerable, the elderly and those with complex medical conditions that require 24-7 care.
In Ontario there is currently a process in place to standardize care through Health Quality Ontario. Structures are being established through the local health integration networks to support providers. Ontario is also committed to developing stand-alone hospices. However, the hospices will not be able to substitute the type of care we provide to complex patients in long-term care.
Those living in our homes are also dying in our homes. In Ontario alone, 20 per cent of all deaths that occur have taken place in our homes. Standards, amount of care and quality of care, vary across the country. Each long-term care home does the best within their physical resources of their building. Ideally everyone should have a private room and the physical setup to accommodate family members. It can be done in some homes but not others, and it is disappointing when it can’t always be accessed.
In Winnipeg, for instance, they have one freestanding hospice with six beds and one associated with a hospital that has about 28 beds. They also have one hospital with a palliative care ward with 24 beds. Around the province likely each large hospital would have one or two beds for this, but there is a long wait list due to the underserviced communities that you have heard about today.
In New Brunswick, as well as many other areas in Canada, geriatricians, pain control specialists or palliative physicians are accessible in urban areas. It is not possible in all rural areas, and that access to quality won’t change without a provincial standard.
We appreciate this study and this bill because more attention needs to be paid to the palliative care structures, which are truly person centred across the country, from developing the infrastructure to access care, calling for standardized care practices, supports to make that a reality, and to providing training and supports to staff.
Our residents across the country are serving a specific population. High quality palliative care initiatives will help us improve the type of care for the population that we serve. These initiatives will help understand what the goals are for individuals in that advanced stage and point in their life, help them live to the best quality of life, and help them be comfortable near the end of their life.
In June we launched a three-year program fully funded by the Ministry of Health and Long-Term Care to implement clinical support tools across every long-term care home in the province with plans to take that outside of Ontario and across Canada through CALTC.
End of life is one of the focuses we chose in the first six areas. Basically we are looking at that point of care for every person that touches a resident inside a home, including the PSWs, who are the eyes and ears of the home.
Thank you very much. I truly appreciate being here today.
The Chair: Colleagues, I remind you that this session will end no later than 12:30 p.m.
We will use one question per round, and please direct your question in the first instance. Each pair of witnesses will have a chance to respond.
Senator Petitclerc: Dr. Rice, we have heard a lot about palliative care, obviously. There are many issues and challenges.
I want to bring the question back specifically to the bill. In your view, when we look at everything that is addressed within the bill, whether it is the definition, education, support or access, is it your feeling that this bill is comprehensive and specific enough to ensure that none of the important things mentioned will fall in a gap or be missed? Is everything covered by the bill? That is my question.
Dr. Rice: It will depend a bit on how the people operationalizing the bill do so. If people take a narrow view of education and health care providers, then things can fall through the gap. It all depends on how you build around the framework.
The key elements are all there and can be developed from the elements without additions. It is to interpret those pieces as widely as possible to make sure that we address those gaps.
Ms. Chartier: I agree. If we truly put the patient at the centre of the whole framework, then that seamless transition will hopefully catch those gaps. Right now there are significant gaps.
Senator Eggleton: I want to address the issue of the burden of cost, particularly for low and moderate income people.
If a patient is in a palliative care facility in a hospital, it is covered under the Canada Health Act; but if they are in a hospice or a long-term care facility or in home care, it is not so, although there is other government funding at the provincial level, for example, which helps out. Sometimes people will have insurance but in a lot of cases they won’t have insurance.
How much will they have to pay or how much are they paying for all of these services? We want to provide quality service and we want to have access, but we want to have access for everyone who is in need. What do we need to do to change the funding situation? For example, could hospices or maybe long-term care facilities become affiliates of hospitals and then maybe the hospital can take them under the Canada Health Act? I don’t know if that is possible, but that is certainly where the costs get better covered.
Tell me what you think we need to do about the burden of cost, particularly for low and moderate income people.
Dr. Rice: I agree with you completely. I work mostly in community settings and cost is a huge factor for the people I work with every day. They have to rent equipment. They have to supplement home care. The irony of it is that part of it is a function of our siloing.
Unfortunately, the default for many people who don’t have insurance and can’t fund privately is to go to a hospital. We know that is not a cost effective solution. It addresses the cost issue for that person, but the fact that we have siloed long-term care and home care out of hospitals and health care, as opposed to having it again as a health care system issue, aggravates the problem. It actually increases our cost. Right now the only way people can offset those costs is to go into a hospital. Addressing that is very critical.
It would be lovely to see the changes at a system level, so that not only are our hospitals transportable but other parts of the health care system are transportable as well.
Ms. Chartier: We have done a lot of research with Colin Pereira around the capacity in Ontario, and we have come up with six models of care going forward outside of the silos that we are currently in long-term care-plus. Palliative is one of those models. For $175 a day, you can die in peace in a long-term care home as opposed to a hospital at $900 a day.
I truly think no one should die in a hospital. It is a waste of our valuable resources. Personally, I lost my sister four years ago. There is a gap in home care so that you can die at home. For example, your family can be shearing you across mattress and all of a sudden you have gaping wounds because you don’t have a lift at home. That can’t possibly be done for everyone in a home care setting. It depends on the degree of palliation.
I sat there and watched her die for four weeks in a hospital with three RNs on shift. I am an RN. I just wanted to pick her up and take her down the road to the little nursing home that I worked in because I had PSWs that stay around the clock to care for people outside of being paid for it.
The research in Ontario that came out this year shows that of the four settings hospice was number one, long-term care was number two, hospital was third, and home was number four. That is what the general public is telling you.
Ms. Kitts: I certainly support the issue that you are raising. HealthCareCAN would want to ensure there is equal access to palliative and all health care services for all Canadians regardless of where they live and regardless of income.
I have some recent stats from the OECD about how overcrowded our hospitals are. I don’t know if people are aware that Canada has some of the highest capacity rates among OECD countries. In 2015, it was 91.6 per cent, exceeded only by Israel and Ireland and way ahead of the United States. That has grown since the 1960s from 75 per cent.
Senator Eggleton raised the concept of satellites during the hearings last night. Hospitals could perhaps have satellite places where people were being provided with more care. The hospital CEOs I have the privilege to be around when looking at various areas, whether mental or child health issues, support the idea of satellite hubs of care outside of our overburdened facilities. I definitely support the premise of your question.
Senator Seidman: I would like to address my question to Dr. Rice at the outset, if I might.
I am troubled by an article published by the Canadian Medical Association at the end of 2012, and I would like your response. It starts by saying:
If someone wants to start administering palliative, end of life or home care in Canada to the terminally ill or elderly, do they need training? Certification? Accreditation? Are they obliged to periodically demonstrate competence or compliance with any manner of standards?
The short answer to all of the above?
For the most part: No. . . .
The absence of national standards and legal requirements essentially means that, in most parts of the country, almost anybody can set themselves up as a provider of the non-pharmaceutical facets of end of life care . . . .
Accreditation of health care providers and facilities is mostly voluntary in Canada. There are few exceptions.
Is that true?
Dr. Rice: I believe it is. There are many accreditation standards, obviously, if you’re setting up as a palliative care provider. We see this with home care agencies that provide palliative care. They are private businesses and some of them have staff with fully appropriate training and some may not. I agree that this is an issue.
Even among certified health care providers, whether they actually have palliative care skills has been a variable. Unfortunately, I think it is probably true.
Senator Stewart Olsen: Dr. Rice, I want to congratulate you on this concrete list of what can be done to move forward more easily. I want to speak about accreditation as well, but mostly hospital accreditation or facility accreditation.
If each hospital and facility were required to provide a palliative care facility, be it large, one or two beds or whatever they can, to receive accreditation, in your opinion would that move us forward on the palliative care availability?
Dr. Rice: There might be some things we could even do preceding that, very simple things like ensuring that an appropriate substitute decision maker is identified on entry to hospital. Often in hospital records you often still see things like next of kin. That doesn’t tell me anything about whether that is the appropriate substitute decision maker for that patient.
Having accreditation requires systems to have a properly documented substitute decision maker to move this forward hugely. It would also help to have steps to say whether there has been any advance care planning done prior to this person coming to hospital; if yes, identify it so that the health care providers then have a mechanism to know, to follow it up and to include it. If not, have a system in place to follow it up.
Those would be very basic foundational things that could be standardized nationally. Things like individual beds and so on will vary with regional needs but the very foundational things would move us forward easily: Do we know who is making the decisions? Do we know what people have said? Have we had those conversations?
Ms. Chartier: I have personally worked in long-term care corporately and at every level for about 20 years. One of the reasons why the project we are doing on clinical support tools is so essential is that it is multi-disciplinary in every aspect. It is also patient and resident centred.
If you just go with accreditation, I find that accreditation is very high level. It is the administrative aspect. We are helping Health Quality Ontario to put their quality stamp on it so that it is patient centred. We will see more tangible outputs when it comes to the care of the patient, and not as an administrative focus.
Senator Dean: First, thank you for the work that you do. I suspect that most of us around this table have been touched by it in one way or another. I have had one parent die in hospital and one parent die in a hospice. They were materially different experiences for all of the reasons that you have spoken about. It turns out, too, that the better one was the much more cost effective one.
It leads me to observe, as you said, Dr. Rice, that this is all about dying and whether we are talking about medically assisted death or palliative care, which connotes death, we are talking about assisting people in dying. I’d suggest that in many cases there is probably no clear dividing line between those two fields of practice and there is a continuum, but I am not asking you a question about that.
You have all been in close contact with family caregivers. One element of this legislation would require us to identify the supports that caregivers need. Could you give us a sense from your experience of the range of supports that you think caregivers would most benefit from? I know these are all individual circumstances but what jumps up to the surface in terms of those things that would most benefit family caregivers?
Ms. Chartier: If you look at the person and at every aspect of your daily living as a person, you have to start there. That is why I alluded to the gaps in my sister’s instance, because everyone was focusing on the bed and her in the bed, and not everything else that had to happen around it.
I was also dumbfounded as an RN working in every setting in health care that her journey started in August and she passed away the following November. Two weeks before she passed away she asked me what palliative meant. My son is 13 years old and he didn’t know why everyone was talking about what palliative meant. I firmly believe that they need to do that. Dr. Rice made a comment about the school system. Because I’m a family nurse out of eight, I had to tell her that she was dying.
No one understands the plain, simple language of what palliative care entails. I think that has to be a huge piece of this, as well as ticking off the “look at you getting up every day; you need to focus on everything you’re doing internally and externally.” That’s what this framework has to cover off.
Dr. Rice: I meet with families almost every day. One of the key things that comes up is that they need to know who to call when they have a question or when they don’t know what to do. Early stages of disease can be very difficult because they’re dealing with multiple health care providers. Nearer end of life and when in a home care setting it becomes even more critical. The 24-hour piece of it is very critical: who to contact 24 hours a day. What phone number do I dial? Can they reach out to the people I need? The 24-hour accessibility is key.
Information about what’s available, the illness and the disease processes, and the service sectors is often complicated for people to navigate. A lot of the work we do is often on information and navigation. Who to call when and what is available are key.
Another thing is recognition of the work they do: hundreds or thousands of hours of unpaid work for their loved ones. That takes a toll on their own health. It means they can’t go to work and they can't contribute. Recognition of that is a key piece, as well as the mechanisms to support it.
I’m always very relieved when the family doctor who cares for the whole family is helping look after the person at home with our special support. Then I know that he or she can help watch over the family members and help look after elements of their health because they are often severely compromised. Research shows that it can take years after a caregiving experience for the family to recover. We underestimate the burden of that.
Ms. Kitts: I’ll add one point to your final point. We are moving to appreciate the whole notion of the workplace understanding the demands on people, whether for palliative care or caring for aging parents. I think all of us have either been in that situation or will be in that situation. We’re moving toward that a bit more.
There has been mention of compassionate care leave and flexibility in the workplace. Sometimes it’s a day here and then two months later a day there. It’s not necessarily taking two months off. We need to have a workforce that understands that people are valuable and employees periodically need to take time off to care for aging parents.
Senator Dean: You’ve covered the areas that I wanted covered.
[Translation]
Senator Mégie: In Quebec, we have home care and hospital care. In terms of palliative care, we have facilities paid for through fundraising, given that they are managed by non-profit organizations. Are hospices across the country funded in the same way?
Dr. Rice: Some elements are the same, and others are different. Ontario has fewer of them. A portion of hospice funding comes from the government, and a portion comes from the community. I have friends who work in hospices in Quebec, and the services are more or less the same.
Senator Mégie: Yes, a portion of the funding comes from the government, and the rest comes from fundraising.
Dr. Rice: Other variations are possible from province to province, because some provinces receive more government funding than others.
[English]
The Chair: Before I go to a second round, Dr. Rice, you mentioned something that struck me. It’s the way the world used to be when I was a child and a family had a doctor. My experience as an aging adult is that families do not have a common doctor. You have described the benefit and enormous importance of a health care practitioner being able to size up the needs and capabilities of a family in these situations, which, of course, includes dementia in that compendium.
You have added a specific point to our conversation that I think was very helpful, so thank you.
Senator Petitclerc: When it comes to health care and palliative care, a lot is left to the provinces.
Ms. Chartier, how good are we at gathering and sharing best practices? How important will it be to be great, or if not to be good, when it comes to consultation and implementation of the coming strategy?
Ms. Chartier: For years there has been very concrete palliative care networks in Ontario that were established when the local health integration networks came into play. My fear is that everyone will create new programs when there are already some proven best practices out there. It’s a matter of coordinating those best practices.
That’s why we chose end of life with this project. At the same time as we’re doing this project, we’re turning our protocols, once complete, into actual apps that we’ll be able to use virtually. We'll take what we’re doing in long-term care and actually plunk it in the community setting and seamlessly go across the care so that it is there when a patient comes in.
This why the steering committee we’ve created has expert physician groups, has the pharmacy, has the ministry, has Health Quality Ontario and has family caregivers. We’re starting off by gathering all of those best practices by everyone sitting at that table. We’re really excited that there will be that consistency.
If you top that off with the remoteness of our country, long-term care homes in Ontario are in 634 communities. In some communities we’re the only health care provider and the major employer, so we are looking at how we can still maintain those small communities but build on them. What else do we need for that community because of the rurality of our province and our country?
Ms. Kitts: It’s absolutely a challenge. I’m sure you’ve heard from other stakeholders in terms of sharing of best practices.
As Ms. Pullen, my colleague from the Canadian Nurses Association, mentioned earlier today, as a national association we, with our member hospitals, play a role in that way.
I should also point out that many of the people who are before you are part of a coalition called the Quality End-of-Life Care Coalition of Canada. We work well together. We convene and share best practices. It’s work that is done very much on a shoestring. Sharon Baxter is very much a leader in that area. It really is about political will, resources and catalytic change.
People talked about the secretariat that is mentioned in the bill. People also brought up the Mental Health Commission as a model and so on. You may be aware that our health minister last week announced a review of all the federally funded organizations, the C groups, as we call them, such as the Canadian Foundation for Healthcare Improvement, CPSI, CIHI, the Mental Health Commission and so on.
As part of this review it might be interesting to look at where our attention to seniors is placed within these organizations. To what extent is it coordinated and collaborative work? In the context of all the work we’re doing to advance palliative care, this other analysis might feed into this work. I just wanted to raise that.
Senator Omidvar: My question is for Dr. Jill Rice. I note in your handout that you conclude with the observation that while the bill is looking for a framework, it cannot directly address care because the federal government doesn’t deliver the services.
We’ve heard a lot about standardization and benchmarks. What aspects of palliative care should be standardized and what aspects should be left up to variation and innovation? Do you have a sense of where the balance lies on the question?
Dr. Rice: Some of the things we’ve talked about certainly can be standardized, such as exploring minimum education standards for all health care providers at elementary and other educational levels as well. Is there any way a framework could address the transferability piece, where for palliative care patients core services are in fact not hospital and necessarily physician based but actually include the other sectors and those could become transferable? How those are operationalized at a local level will vary a lot whether you’re in northern Ontario, rural Quebec or downtown Toronto. There has to be latitude for individuals, but those big structural transferability access issues can be addressed at a framework level.
I will make a point on the issue of best practice. Palliative care is a relatively new discipline. From a medical perspective in some areas we still don’t know what best practices are. That framework point about research is critical because there are huge areas of palliative medicine where we are still doing the research to establish what the best practices are.
The Chair: Excellent point, thank you.
Ms. Chartier: There could be a standardization as well when it comes to human resources. Human resources are very scarce in the country. With the rising tide of seniors outnumbering children under 15, we have to be a lot smarter in how we work.
I would be hesitant for anybody to put restrictions on who delivers palliative care. There is a lot of value in the multi-disciplinary. Everyone needs to be a part of that patient centred care. It can’t be just RNs. It can’t just be RPNs. It has to be multi-disciplinary with that sociological piece attached to it as well.
The Chair: Thank you all very much. Again, we have heard from another panel with tremendous experience and expertise with regard to this issue and identifying aspects of it.
We’ve now had several witnesses recognize that if one could take a realistic approach to dealing with this issue, the amount of money currently being spent in the system could be redistributed in a way that would bring so much better help across the system.
However, there’s something called the Canada Health Act. It is very specific with regard to those issues. Attempts to introduce those in other places appear to have failed, at least at committee stage, and likely would have at a higher level as well had that come through.
This shows not only in what I would say is almost a crisis facing the health care system, in that we have great difficulty working across jurisdictions in a practical sense. As we saw in an earlier study across professions within the system, we have enormous difficulty in finding financial models that are much more flexible than a really nice bureaucratic approach. I’m not being offensive here, because you have to be able to check things. The system has to be able to approve monies out for the billing that comes in, so having specific categories is the easiest of all those cases. It hasn’t yet been able to develop a flexible approach to even allow cooperation among different health providers in a clinic setting.
For example, we have all kinds of pilot studies that show how effectively that works but at the end of the pilot study particularly the province that has funded it is not able to continue funding because there is no billing mechanism to accommodate that. These issues will have to be addressed very quickly with some innovation. This one area where innovation will be critical if there is to be any other innovation.
Thank you for bringing these issues before us. We’ve appreciated your expertise in the past as well. I thank you for being here today. Again, I thank my colleagues for bringing these issues out and getting them on record because if this bill goes forward the record is part of the experience that will be referenced and brought to the implementation, we hope, in that regard.
(The committee adjourned.)