First, let me thank you for allowing us to present this morning. I want to extend especial thanks MP Marilyn Gladu for putting the motion forward. We're thrilled to be able to present today.
The Canadian Hospice Palliative Care Association is the national association that provides leadership in hospice palliative care in the pursuit of excellence regarding the care of persons approaching death so that the burdens of suffering, loneliness, and grief are lessened. Hospice palliative care is aimed at the relief of suffering and improving the quality of life of persons who are living with, or dying from, an advanced illness or who are bereaved.
I noticed in the motion that there was a question about definitions. There are a number of definitions. If you refer to the brief we've submitted, on the last page we provide definitions for “hospice palliative care”, “palliative approach to care”, and “advance care planning”. These terms tend to get intertwined in people's thinking. Hopefully, that will be helpful for you.
We are pleased that there is a desire to develop and implement a framework designed to guarantee that all Canadians have access to high-quality palliative care. The provision of specialist hospice palliative care in acute care hospitals and residential hospices and the palliative approach to care provided in the community—including home care, long-term care, and other settings—have not received the attention, funding, and support that's needed in light of our aging population. It's going to become a critical issue.
Now, if I may, I'd like to take a little time to highlight some of the existing resources and documentation that could help you in developing and implementing a palliative care framework. To be clear, we are not starting from scratch. We have a lot of information and there have been a lot of reports.
CHPCA, my association, serves as the secretariat for the Quality End-of-Life Care Coalition of Canada. It was formed in 2000, so we've been around for 17 years. I'd like to give a quick shout out to a few of the coalition members who are in the room today. The Canadian Nurses Association, Pallium Canada, the Canadian Cancer Society, and the Canadian Society of Palliative Care Physicians are all in the room today. There are 39 national associations, including all the professional associations and disease-specific groups, and they've been working together for 17 years to try to highlight the issue of hospice palliative care.
At the end of our brief, we've also listed the coalition members just for your information, because, obviously, we don't want to take up the time today.
The Quality End-of-Life Care Coalition produced a guiding document called, “Blueprint for Action 2010 to 2020”, and it identified four priority areas of focus. They have stood the test of time through the last decade. The first one is ensuring all Canadians have access to high-quality hospice, palliative, and end-of-life care. The second is providing more support for family caregivers, including bereavement support through the federal compassionate care benefit and other opportunities. We actually have about six or seven different ideas. The third is improving the quality and consistency of hospice palliative care in Canada, including research, training, and education. The fourth is encouraging Canadians to discuss their wishes for their care in the future, including at end-of-life. We've often referred to this as advance care planning. It's called different things, depending on where you are in Canada. It's so Canadian that in different jurisdictions they call it different things.
Between 2012 and 2015, the Government of Canada provided CHPCA and the Quality End-of-Life Care Coalition funding for a three-year initiative called, “The Way Forward: An Integrated Palliative Approach to Care”. This culminated in the development of a national framework and the dissemination of practical resources and tools to help governments, policy-makers, regional planners, health service organizations, and health care providers on the ground to adopt a palliative approach to care. Indeed, five provinces are using it as a foundational piece of work in trying to push out an integrated model.
“The Way Forward” was intended to be a catalyst for action by raising the awareness and understanding of a palliative approach to care. The initiative also defined “hospice palliative care”, a “palliative approach to care”, and “advance care planning”. I refer you to the lexicon of terms. At the end of our brief, we've put some links to some of these documents and in “The Way Forward” we have a lexicon of terms. Hopefully, that will help you with your deliberations.
Traditionally, the last days or weeks of life are the most common time for referrals to hospice palliative care programs and services, if at all, and these are often reserved for individuals designated as “dying”. Those tend to be the patient who is dying with an end-of-life experience that needs specialist care—cancer patients, or those with HIV or AIDS or some of those diseases—but not necessarily those patients who are not designated as dying, like the dementia patient. Indeed, about 65% of Canadians die of diseases that do not necessarily need specialist palliative care, but do need a palliative approach to care. There is this nuance between the two.
The overarching goal of the initiative was to ensure more Canadians can live well until dying by enhancing their quality of life through the course of illness and through the process of aging, and not just in the last days or weeks of life.
In December 2016, just two months ago, CHPCA undertook an environmental scan of all the provinces and territories, as well as the QELCCC members, to determine where they stood in the implementation of a palliative approach to care. Given that health is a provincial and territorial responsibility, it is absolutely imperative to understand where their priorities lie to best determine how we proceed federally. The surveys provided important information that will drive the adoption of a palliative approach to care. Remember that the initial project was only $3 million and was a catalyst project, so it was just the start of the conversation.
The two surveys offered the following highlights. I'll name a few of them.
While public awareness is one driver of adoption of a palliative approach to care, we need to do more to enhance the understanding of a palliative approach to care and advance care planning with the public and health care providers. I think the issue of public awareness is an interesting piece of work that we really need to do. Most Canadians are confused about what hospice palliative care is, what a palliative approach is, what “do not resuscitate” means, what sedation is, and what your rights are among hydration, nutrition, and treatment. It's all blurry in the minds of Canadians, and we really need to do a much better job of giving them that information.
Next, a national education curriculum and ongoing continuing professional development through enhanced skills and training are needed for all health care providers across all settings of care. As well, conversations about the palliative approach need to be better integrated into usual medical care. This would help to make a palliative approach part of ongoing treatment and not necessarily a separate specialized or referral-based program, so that it becomes part of the care that anybody will receive when they're coming to the end of their life.
Also, ongoing advocacy efforts for a palliative approach to care must continue, particularly in light of the introduction of medical assistance in dying, which has created a need to clarify what hospice palliative care is all about, where it is available, and what more needs to be done to ensure that it is accessible to all Canadians. We've often said that it would be a shame if a Canadian chose MAID when they could have benefited from hospice palliative care, so we need to be able to make sure that they're given that opportunity. In addition, current care pathways need to include a palliative approach, and tools and materials for health care systems and professionals must enable adoption.
Last, we must ensure resources are available and dedicated to hospice palliative care and flexible to meet population health needs, including those Canadians who are members of the indigenous culture or vulnerable groups.
This final report was given to Health Canada just on Tuesday. There are several other great reports, studies, environmental scans, and evidence, such as the recent consensus statement and lay panel recommendations coming out of a November 2016 three-day Palliative Care Matters consensus conference that was held here in Ottawa. You can see that a lot of this is very recent. All the findings are consistent with the “Blueprint for Action” and many of the other reports. They include calls for a national care strategy; a national secretariat, including a national centre for research; a national public awareness campaign regarding the palliative approach to care and advance care planning, for the public and for health care providers; education and training for health care professionals; and caregiver support. As you can see, there is a great consensus among all these studies.
I notice that Bill references all Canadians. It is imperative that policy-makers remember that not all Canadians have equal access to health care—especially hospice palliative care—in this country. Vulnerable populations, including those who are indigenous, disabled, homeless or vulnerably housed, impoverished, or incarcerated are often forgotten. Innovative models for delivering hospice palliative care are required to meet these populations' unique needs and to address the barriers they face when accessing services.
Barriers to accessing high-quality palliative care include non-malignant diagnoses, geography—we do a much worse job providing services to rural Canada—poverty, lack of supports, comorbidities, mental health, and substance abuse all play into how these people do not receive the care they need at the end of their lives. When you say “all Canadians”, we really need to think about all Canadians.
Another group who are often not considered are children. A recent study from SickKids in Toronto that was finished in 2012 cited that overall only 18.6% of deceased children who might have benefited from palliative care received the care based on their diagnosis, and 25.2% had their care only eight days before they died. We can do much better. Pediatric palliative care has developed as an integrated model of care and can successfully be adapted in the adult population. We can learn from their experience.
In summary, we really don't need to study the situation any further. The studies and reports have all been done. The ample evidence clearly points to one course of action, which is to support and fund the agreed-upon priorities to make hospice palliative care accessible to all Canadians. Governments, health care associations, and organizations have all been partners in this, but corporate Canada has a role to play. The Canadian Hospice Palliative Care Association, my association, has a champion's council that is made up of leaders of industry and commerce. They've just launched a program called Canadian compassionate companies that highlights companies and organizations that accommodate—
My name is Josette Roussel. I'm a registered nurse and senior nurse adviser for the Canadian Nurses Association, the national professional voice representing nearly 139,000 RNs and nurse practitioners, including almost 1,400 nurses with specialty certification in hospice palliative care.
Nurses are leaders with a fundamental role in developing and implementing a palliative approach to care, and therefore, I am pleased to inform the committee that CNA is supportive of this important bill. I will now turn to the CNA's four suggestions, including several amendments for the committee's consideration. These are outlined in detail in the brief that we will submit to the committee.
First is the need for greater emphasis on a palliative approach to care throughout the bill. CNA advocates for a palliative approach to care enabled by advance care planning. This approach is guided by core tenets of palliative care, such as dignity, hope, comfort, quality of life, and relief of suffering. This care is provided earlier in the course of the illness, in all health settings, by a range of health care professionals. It involves physical, psychological, social, and spiritual care. CNA believes that the proposed bill must speak to the palliative approach to care as opposed to limiting the discussion to a specific service provided in the patient's final days.
We therefore recommend that paragraph 2(1)(a) be as follows:
|defines what palliative care and a palliative approach to care is.
Second, we suggest expanding palliative care training and education beyond specialized palliative care providers. Research reveals that our country does not have adequate palliative care training for health care providers. One way to address this gap would be to include education and training in the core curricula for students in all health care disciplines. We, therefore, recommend that paragraph 2(1)(b) be amended as follows:
|identifies the palliative care training and education needs of palliative health care providers as well as other health care providers.
Third, CNA encourages the committee to support the development and implementation of national evidence-based standards for integrated palliative care. Currently, there are no nationwide policies and evidence-based standards of care to ensure integration of the palliative approach to care across the continuum. In addition to not having a framework for palliative care, there are no standardized and widely adopted methods to guide health care providers, including nurses, on when and how to implement the palliative approach to care.
The lack of national evidence-based standards for integrated palliative care renders it impossible to collect relevant data and to track and report on key indicators. Therefore, provinces and territories have limited capability to understand whether, where, and how to improve palliative care. Therefore, CNA recommends that paragraph 2(1)(d) be amended as follows:
|collects standards from research and data on palliative care.
Finally, I would like to address the provision of funding to develop a framework for palliative care in Canada. CNA supports the recommendations outlined in the 2015 Quality End-of-Life Care Coalition of Canada report titled “The Way Forward”.
The coalition calls for federal funding for the establishment of a national secretariat that would oversee development, implementation, and maintenance of a national palliative care framework. This would set strategic directions and lead to a coordinated, comprehensive, pan-Canadian approach to palliative care. Reinstatement of Health Canada's secretariat on palliative and end-of-life care is a move that CNA would support.
In closing, I emphasize that CNA is a strong advocate for high-quality palliative care that is accessible to all Canadians in settings that best suit their care needs.
I would like to thank the committee for providing CNA with the opportunity to speak on behalf of RNs and NPs in Canada on this important matter, and I look forward to your questions.
I have a number of questions, but before I do, I have to correct the record because Mr. Webber has misled the committee here.
There's been no cut by the Notley government of any spiritual specialists. I've just quickly Googled it. There was a decision to cut a specialist position at the Tom Baker Cancer Centre, which was made by the director of that centre. It was not a decision of the Notley government whatsoever.
As a matter of fact, I'll quote, “Alberta's Health Minister said [the centre] reassured her office that patients seeking spiritual guidance or comfort in the TBCC will receive it.”
In her quote, Minister Sarah Hoffman said, “Access to spiritual support can not only be crucial on a personal level to a patient, it can also have a meaningful effect on the patient's recovery and well being.” She added that Alberta Health “will be following up with AHS to monitor the transition” to ensure that spiritual services are provided.
I just wanted to clarify in case anybody was misled by Mr. Webber's comment.
What is true, though, is that the Conservative Party, which Mr. Webber is a member of.... One of the first acts of the Harper government was to eliminate the federally funded national secretariat on palliative and end-of-life care when they first took office in 2006. That cut the budget $1 million to $1.5 million from that secretariat. Over the last 11 years we've been without that funding.
I think it was you, Ms. Roussel, who referenced that it would be your advice that the government should re-establish a national secretariat to coordinate a national palliative care strategy.
It's a pleasure to be here. This is such an important issue that we are thrilled to be here to help support this.
To quickly come to the point of the matter, our society certainly recommends the acceptance of Bill . We've been supporting this concept for quite some time. We're thrilled to see this coming forward and to see the uniformity across all parties in understanding this need and the importance of this issue. We're happy that this is moving forward. We're here to help make sure it moves forward, and we'll do what we can to support it.
I know that you have already had several presentations and are getting the big gist of things, but I want to bring us back to a big picture and down to earth a little. Despite Dr. Oz and all the wonderful health care you get through Dr. Google, the world mortality rate unfortunately is still at 100%. We'll all die eventually, so this is really the only issue that is non-partisan. It's non-faith-based. It's women, it's men, and it's children. This is something that affects everyone.
We're all going to be dealing with this at some point, but dealing with this today is different than it was even 50 years ago. With the advent of some of the advances in health care, dying has changed. It has become more complicated and we need to be able to address that.
I think the aging demographics that we're facing have been discussed before. The graph I have here is a nice one to give a good visual of where we are and the urgency with which we need to move these things forward. If you look at where we are on the graph, you'll see a very large jump from 2011 to 2021 in the number of people who are going to be 65 and older. We know we're human beings. We know we have parts that wear out and break down, and we can't get replacement parts very readily, so things are going to happen. This is going to be the largest part of the population that ends up driving the demand for palliative care services. Again, as that baby boomer generation is hitting this age group, we can see very dramatic increases in the numbers, very significantly so.
I've actually put myself on the graph. I'm coming into this, too, so one could say that this is a very self-serving thing for me, because not only do I want to make sure that I can get the care I'm going to need down the road, but I've put in my son, who's now 15, at where he will be at 65, so that coming down the road for my children and my children's children we will have a strong foundation for the type of care they're going to need as well.
As I look around the room, I see a couple of grey hairs here and there, so you know what? If there's no other good reason, folks, this is for all of us sitting in the room, and also, some day, for some of the younger people sitting off to the side.
Where are some of our current gaps? I've broken it down very basically into professional and human resources. We've talked about that a bit, about just the sheer numbers of people with a bit more of that advanced training in palliative medicine, or the specialty training, and that builds into the skilled providers. Along with that aging demographic, it includes those of us working in palliative care. We have an aging demographic of skilled labour as well, and that too needs to be replaced as time goes on.
In the current gaps in terms of public issues, access now has been well documented as a big issue. There are pockets of places where access is pretty good but likely could be better. I know that in our neck of the woods—because on the east coast we do have some of that aging population—we're probably a little bit skewed on the curve. We have wait-lists now to access palliative care services, which is just atrocious, but that's the reality of the world right now.
As I said earlier, people are living longer with multiple comorbidities because we've been able to manage their renal failure and manage their heart failure. As well, they may have a couple of new arteries in their heart, so they're pumping longer. We've advanced some things, but at the end of the day we still have people with more chronic comorbidities that complicate things as they are getting older, and as these organs and parts still continue to wear out.
There's a higher complexity from the physical nature of it, but it's also a higher complexity because of our generation too. We have a lot of people who have been moving back and forth across the country for work opportunities the way our children do, so often there are not as many caregivers around family-wise to help provide the care in the home that we used to have years ago.
Again, with the aging demographic, we have higher numbers requiring care, and because people are living longer, often there are lower numbers of care providers. If someone is 91 and their spouse is 92 and a fair bit of physical care needs to happen, there are limitations, because of that age range, in what they can and cannot provide physically.
As far as informational gaps that we're facing go, again we still don't have national indicators for palliative care across the country. We don't have our national standards. There's no national reporting and there's no national oversight. That's one of the key things I think this bill can actually bring to the table and really needs to bring to the table. We need that large-scale look at how things are going in a unified way so we can start to look at how things are being done across the country and optimize best practices and make sure they get translated across the country so that we can all do better.
Some great work and some great projects have been done. Now is the time to be taking those and implementing those across the country. As I've said in the past, the time of pilot projects should be done. We need to be moving forward.
I'll just very briefly make one statement, and I think maybe Mr. Oliver made a comment on this earlier. Medically assisted dying is not a choice when there is no other choice. Unfortunately, that's the way it is in Canada right now because of the lack of access to palliative care services.
Bill would fulfill some of the recommendations that were brought forward in the Special Joint Committee on Physician-Assisted Dying. Specifically number 19 was to:
||re-establish a Secretariat on Palliative and End-of-Life Care; and that Health Canada work with the provinces and territories and civil society to develop a flexible, integrated model of palliative care by implementing a pan-Canadian palliative and end-of-life strategy.
Number 18 was to:
||ensure that culturally and spiritually appropriate end-of-life care services, including palliative care, are available to Indigenous [people].
This bill would also ensure that palliative care is provided to the people the federal government is responsible for providing health care to. The groups under federal jurisdiction include first nations people living on reserves, the Inuit, serving members of the Canadian forces, eligible veterans, inmates in federal penitentiaries, and some groups of refugee claimants. We need to ensure that we have national standards in this for that population as well.
The bill talks a little bit about the Canada Health Act. When we really start to look at the Canada Health Act, we see that it says that all Canadians should have universal complete access to care. Approval of Bill would ensure that Canada set the standards for access to quality palliative care for all ages including children, all geographies, and all diagnoses.
To ensure that Canadians have access to high-quality palliative care, we have developed a couple of documents recently that we sent to all the members previously and can certainly make available again. The web connection is present there for you. Basically we're stating clearly that we need to look at implementing the palliative approach to care as outlined in the national framework document “The Way Forward”, which you've heard about today and, I think, previously as well. That document is a good foundation for how things should be moving forward. We, along with many other palliative care organizations and other organizations throughout the country, have endorsed that.
Again, we don't need to start from scratch. One of our key messages is that we need to start to work on implementation as opposed to doing further development.
The second document, which we released just a couple of weeks ago, was looking at the cost-effectiveness of palliative care. Very briefly, some of the different studies looked at lowering costs of delivery by up to 30%. Even more importantly when you look at the delivery of this care, it will also help to free up scarce resources in acute care such as beds in intensive care units for patients who truly need them.
When palliative care can be involved early on, you start to have some of those discussions about goals of care and what the patients' wishes are and their understanding of their illness. They can realize that going into the ICU may not be what's really in their best interests. It's not going to fix things. If we can keep people out of the ICU, for whom there really isn't going to be true benefit, that will open up those beds for somebody else who truly can benefit from using up those very limited resources.
Again, we come back to that aging population. There's going to be a bigger demand on everything throughout health care. There are going to be more people who will need those intensive care beds, so we need to be really making sure we utilize our resources as efficiently as possible. At the same time, while we're offering the same type of care, we're improving quality of life and quality of care for patients with serious illnesses and for their families.
Health care costs have been escalating as a consequence of our failure to adapt to the changing demographics of Canadians and advances in chronic disease management, including cancer. Change is now long overdue. Continued failure to invest in palliative care will be a lost opportunity to achieve better efficiencies, improve outcomes, and reallocate budgets to other priorities. The status quo really neither meets Canadians' needs nor is financially sustainable.
What we're recommending certainly is the forward movement and acceptance of . We'd really like to see an established well-funded secretariat, and the formation of a small, nimble, high-level working group made up of key national organizations to start working with the secretariat on implementation.
Focus needs to be on administrative cost containment so that funds can see their way to the delivery of services. We've seen other projects go on and lots of money put into major infrastructure, which unfortunately hasn't translated into a lot of key things hitting...your rubber hitting the road. This is something where there's lots of good work happening across the country. We have shown in the palliative care world that we work well together. We've been doing things on a shoestring for years. This can be done efficiently. We want to see the monies get to providers out in the areas with increased resources so that we can actually make those differences that need to happen.
We need to bring in additional stakeholders, when and where required, to develop the efficiencies, gain the insights, and mobilize strategies. Having another 100-body committee to work on things is going to be very slow and tedious. Again, you see by that demographic curve, we're into it now. We don't have 10 or 15 years to be doing this. Our hospitals are already starting to be overloaded. I know in Nova Scotia they have overcrowding. They're having to develop new terms to label the levels of overcrowding we're having in some of our hospitals because of this aging demographic and the demands.
What is needed? Again, we need to start with what we know. We really need to be collecting standardized national data. That can happen as well through a national secretariat to help move that forward and make sure we're doing this: setting, monitoring, and enforcing national standards and indicators for palliative care in Canada; and making accreditation of health care services both in hospitals, long-term care homes, home care services, etc., all mandatory and contingent on palliative care services being provisioned to nationally accepted standards. We also need to—and my colleague here will be speaking to this, I think, a bit more—standardize and insist on integration of core competencies in the schools of health care professionals.
We had the opportunity to hear from the Canadian Nurses Association today. I know for medicine, for nursing, for social work, and for pharmacy in particular the core competencies are developed. The big challenge has been getting those integrated within the health care professional schools. That is something for which we may need some federal pressure to help make that happen. We've been advocating. We've been trying to get that to happen, but there's so much competition for that time within our professional schools that you have to look to take something out to add some more time in. But, at the end of the day, what we're doing is so fundamental it needs to be there.
Good afternoon to all of you.
I am a clinician in the trenches, and I think that what I'm going to say to you will answer a lot of those questions, because I'm going to show you that it's all practically possible and it delivers good results.
I'll present myself. I am from South Africa. I came here in 2004, to McGill, initially. Then I went to Ottawa, and I'm now in Brampton. I am a qualified internal medicine specialist, as well as a medical oncologist, and I also have a degree in palliative medicine.
In South Africa, which has the reputation of having the most hospices in Africa, we indeed have a recognized university degree. I was in the first class that got it, in 2004. We do see that having it formally recognized changed a lot of government policy.
I'm going to reference two documents. The first is Bill , which clearly says that in order for a patient to have a proper...and to really have a voluntary decision to participate in medically assisted dying, he must be given the choice of palliative care. I think that has motivated me a lot to develop what we've done.
I'm not sure if any of you know about the 2015 quality of death index. It's a report by The Economist's intelligence unit, and I think it is enough motivation to say that Canada is at number 11 on the list. This is not good enough. Before I got to Canada, I did read that the Honourable Irwin Cotler, in 2002, when he was justice minister, said that palliative care is a basic human right, and I think we should move forward on that one.
You may have heard many definitions of palliative care as an approach that looks at patients who have life-limiting disease and their families, and that is impeccable symptom management. It definitely involves the psychosocial, spiritual, physical, and every other domain of a human being. It's holistic care.
In the World Health Organization definition, there are little attachments that people don't know about, and I'm going to speak specifically about three of these attachments.
First, palliative care “affirms life and regards dying as a normal process”. It doesn't “hasten”, nor does it “postpone” death. It “offers a [full] support system to help patients live [as long as possible and] as actively as possible”, keeping people as comfortable as possible for as long as possible. It has a goal of enhancing quality of life, and once again, it is “applicable early in the course of illness”.
This is not just about end-of-life care. We now know from many clinical trials in patients.... The most topical one is in patients with metastatic lung cancer. The patients who were randomly assigned to receive palliative care and normal chemotherapy had less chemotherapy and lived longer.
This is the model that we put together, initially in Ottawa and now in Brampton. What it looks at is the four pillars. This is a model where we start with an in-patient palliative care service for those patients requiring specialist palliative care: terrible pain that's not controlled, extreme anxiety, or existential issues, so the patient needs to come into hospital to be treated in a palliative care unit.
We also have a consultative service in our hospital, where patients are referred to us from the different wards—orthopaedic, medical, geriatric, internal medicine—and I'll show you that. Patients are seen and treated in conjunction with the most responsible physician. We cannot see all the patients. There are more than enough patients, so our aim is to build capacity. I'm surprised that nobody is speaking about building capacity at such a great level, but we have an enormous obligation to build capacity.
Then, what we recently started is the ambulatory outpatient clinic; we have patients who are able to come to the clinic and are seen. We also—I'm going to show you some results of this—have a robust community service. We have patients being seen in their home by a physician, as well as a nurse. We work as a dyad.
Around the centre of these four pillars, we are embedded within education, because without education we will never be able to build capacity. In our specific area in the LHIN, we have made it a goal to have as many of the LEAP courses as we can to build capacity. I'm sure you've heard of that, learning essential approaches to palliative care, with the Pallium project.
Then, of course, we all need to know that research is important. Why is it important? Because research allows you to have that margin of error. It tells you you're not doing as well as what you want to do, that you need to research this to get better. It's a self-audit. Let's use our model, and it works.
Since I started this program in Brampton, these are the patients who have been referred to us as new patients, and you will notice that the majority, more than 765 patients have been referred to us from general internal medicine. Palliative care is not only about patients with cancer, and I will once again ask you to please not call them palliative care patients. They're patients with cancer, cardiac failure, renal failure, chronic obstructive airways disease. They're patients with a terminal disease.
We're getting patients from all spheres, and this brings in the question: how do we bring it in earlier? How do we start the earlier goals of care discussion? From the ER, we've had 104 patients referred directly to us. How do we start the discussion of advance care directives, not necessarily saying that a DNR doesn't mean any treatment? I like the term ANC, allowing natural causes, but, of course, explaining to a patient that it means that everything possible that can be done will be done to keep them as comfortable as possible for as long as possible.
Here are some little graphs that we can show you since we started the palliative care outpatient clinic at the Brampton Civic Hospital, as well as the Etobicoke General Hospital. We only got it going in April of last year, but you can see that we're having more and more patients referred to us on an outpatient basis. We have already admitted 60 patients into the ward directly from the community through the outpatient clinic. They have not gone to wait for a day or two in the ER, where you have 400 to 600 visits a day, where you have people coming from the long-term care facilities who can wait 30 hours there, where you have 300 patients from the long-term care facilities dying in the ER while waiting to see a doctor.
Seeing them in the community, putting them into the outpatient and then, if necessary, admitting the patients.... You will notice, of course, that the last month or two we've had a decrease in palliative care clinic visits, the reason being that we've had more home visits. We're taking the palliative care to the patients where they want it and wherever we can do it as is best, but it's a dyad. This is teamwork. This is about communication. This is not about the patient belonging to me, and that is where I appeal to you to try a funding model that is not fee for service.
If you have a funding model that's not fee for service, everybody can be obliged to do education, to do research, but when you have a fee-for-service model, it's about how many patients I can collect. That is the one recommendation I would say. We move the patients into the community, but of course, we change the funding structure of how people are paid.
The other program I'd like to speak to you about is the palliative rehabilitation program. This program was designed and implemented very successfully here in Ottawa at the Élisabeth Bruyère and the Ottawa Hospital. The goal of palliative rehabilitation is to enhance the physical, psychological, social, and professional well-being of the patient.
Answering the questions that were asked by Mr. Webber about whether we look at the spiritual aspect, each one of our patients gets a spiritual history. You can have a physical history: how is your pain, your nausea, your vomiting, your anxiety, your depression? But for your spiritual history, it's do you have faith? How important is it to you? Do you have a community that you work in? Do you have community support and how would you like me as your physician or your health care provider to provide a spiritual backup for you?
The palliative rehabilitation patients we're seeing here. I'm just going to show you. This was an eight-week program where we had the patient see the OT, the physio, the dietitian, the social worker, the nurse, and the doctor with the patient and the family at the centre of the team. These are values that are taken before the program and eight weeks later, and you can clearly see the statistical significance of the general activity of the patient that's improved, their mood, their working, their relationships with others, their walking, as well as an enjoyment of life. These are validated tests shown statistically significant.
I have to bring you one of these because this is the patient testimony, if we're talking about patient-reported outcomes and what it means to the patient and their family. They said, “I feel I have been remiss in not writing to you sooner. I cannot say enough about how positive I felt being involved with your team. The thing that impressed me most was your profound respect for me. I think that this was only surpassed by the admiration and respect you had for each other. This allowed me to open up and be more trusting. I knew that anything I shared of value and significance was relayed to other team members. My wife and I were no longer on our own.”
None of our patients want to feel helpless, hopeless, and abandoned. It's our job to take that away from a patient. “Simple things seem to take on a profound meaning 'you need to eat more', 'don't feel guilty about resting', 'you don't have to endure the pain, that's why we give you medication” are a few things that come to mind. As I write I realize that the most important thing is that we felt we were part of a team and that made all the difference.”
So how do I see the future? I see the future with public health, billboards at the side of the road saying, “This is palliative care. It is not physician-assisted suicide”. I also say to you palliative medicine specialty training needs to be brought to the fore. It's happening. It needs a push. The funding of hospital and community palliative care rehabilitation teams, which is not an expensive funding model, have been off course to push the leap as well as the Pallium educational sessions and research.
I thank you for your attention.
We're actually working right now on some staffing models. As my colleague here says, part of the problem with trying to develop what human resources are required for palliative care is that there aren't any good evidence-based models of the numbers of people they have. What is out there starts to talk about how many physicians you need, and that's all it looks at. This can't be looked at as a physician resource issue without looking at a whole-team approach. That's the model we're looking at.
You also can't look at it from a purely demographic numbers approach, either, which is often how it's done. You need x number of doctors per 100,000 people. Well, 100,000 people in an older part of the country is different from, say, Calgary, where you generally have a younger population. You have to look at the curves of that same 100,000 people. How many people are over the age of 65? Where are the demands at this time?
We're developing a model that really will be looking at the team approach of how many nurses, social workers, pharmacists with extra training in palliative medicine, and palliative care physicians as a specialty team need to be in an area based on, really, even going back and looking at our death rate, because that tells you how many people, as a better number than just pure population, are needing these kinds of services.
We're in the process of working on that right now, but that is something that's very much needed. There are great models across the country showing how this can be done. Again, I go right back to Dame Cicely Saunders, who was the founder of the modern hospice movement. She said this is best delivered by an interdisciplinary team having access to that good quality palliative care nurse.
Honestly, I see the palliative care nurse as the key ingredient to this whole mixture, especially for community, rural, urban, everywhere, because you can have more nurses out there working with the primary care teams, physicians, nurse practitioners, and so on, helping to guide them a little bit but also helping to ensure that the right assessments are being done, the right information is getting to the primary care team, and when it's more complex, being able to pull in the palliative care consultant to be able to help with more of that expertise.
I think that's the way we need to be looking at moving forward, so we are working on that. Hopefully, over the next few months, we'll have some better, clearer.... I know what we need, but I can't tell you it yet.
Yes. Almost across the country you can find a pocket of something where you go, “Wow, that's great”. I'm from the east coast, so I'll bring this one up. It's quite new. We did a project in partnership with Prince Edward Island where we did training with our paramedics. You may have heard of it. It started off with paramedics actually extending and doing a little bit more work in long-term care facilities. They have their advanced paramedics able to go to a long-term care facility and do a little bit more of an assessment, call back to a physician, and ideally keep that person in the long-term care facility.
Discussions started on whether or not we could do this for other special patient populations. We talked about palliative care. We thought that sounded like a great idea. As you start to look at that 24-hour coverage, how do you get access in the middle of the night, weekends, and so on? They said it was a great project, and we received some funding through the Canadian foundation for innovative health.
They started saying that we needed to do education, so I introduced that project to Pallium, who within a couple of months had developed LEAP Paramedic, which formed the standard training. Over about a month, we provided training to every EHS professional in Nova Scotia and Prince Edward Island and got the project up and running. Now there's a special patient population that we as a palliative care team or even a primary care physician can register the patient for. It provides more information to EHS so that they will know what potentially they will be responding to.
Within that, there are more goals of care for the person so that they will know, yes, they will respond here, but the person does not want to go to the hospital. They will know when they respond that they may need to help address some acute shortness of breath, or acute nausea and vomiting, or something like that, as opposed to needing to pick up the person and take them to hospital.
It has gone over tremendously. I still have on my to-do list a note that I have to write. Yesterday I had a case where one of our patients had developed nausea and vomiting through the night. She was quite dehydrated, quite elderly, and was probably heading toward going to the emergency department. Our EHS colleagues arrived, and the comment I heard from the daughter was that she so much appreciated that they stopped and said, ”Okay, let's look at what's going on here” as opposed to saying, “She has this symptom and that symptom. Let's get her to emergency.”
They asked what her goals were, and found out that ideally she didn't want to go to hospital. They were calm. They discussed it. They gave me a call. We did some interventions. They gave her some fluid at home and gave her some anti-nausea medication. I was able to drop in a little bit later on, and she was doing much better. So there was a patient who avoided an emergency room visit. She was happier. Her husband was happier. Her daughter was happier. They complimented the EHS team. It's on my to-do list that I need to send an email back through our folks to give a pat on the back to those EHS providers. It's always nice to hear that your work is appreciated.
That's one project, but there are many right across the country. Alberta is doing the same project, and now LEAP Paramedic has incorporated some of the Alberta things. It's been adapted a little bit. There are now really three provinces that this has had uptake in, and it's starting to spread across the country. There are lots of great examples of that. Ten years ago we wouldn't have thought of using EHS as a partner in this, but again, at two o'clock in the morning they can go and they have had some extra education. In Nova Scotia they have some different tools and medications on their buses that they didn't have previously, so now they are able to help make more things happen.