On this episode, we hear from palliative care experts Drs. James Downar, Kieran Quinn and Sandy Buchman who discuss the challenges within the province’s palliative-care system and their hope to improve access by restructuring the current system.
On this episode, we hear from palliative care experts Drs. James Downar, Kieran Quinn and Sandy Buchman who discuss the challenges within the province’s palliative-care system and their hope to improve access by restructuring the current system.
Spotlight on Health – Palliative Care
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Georgia Balogiannis: In this podcast the Ontario Medical Association looks at current issues of interest in health care. Spotlight on Health gives you all the straight talk. We're Ontario's doctors and your health matters to us. I'm Georgia Balogiannis for the Ontario Medical Association.
On this episode, doctors address the restructuring of palliative care in Ontario.
Dr. James Downer is an ICU physician and head of the Division of Palliative Care at the University of Ottawa.
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Dr. James Downer: Our system is very poorly set up to handle end of life care. When someone comes at or near the end of life, there's really limited options for them. They can die at home. That's actually pretty rare. But as the needs go up, homecare goes up, but often can't go up sufficiently. There's a very large portion of outpatients that cannot manage at home, either because homecare depends heavily on families and other unpaid caregivers.
Homecare does not pay for a 24-hour caregiver, reliable 24-hour caregiving. You can address that to a certain degree by increasing homecare funding. There really are very limited non-hospital options, so what happens is patients stay admitted to hospital until the end of their life or spend a good chunk of the remainder of their life admitted to an acute care bed, but not getting acute care.
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Dr. Downer: There's two problems. One of them is that we don't necessarily pick up when people are nearing the end of their life, number one. Number two, the biggest problem probably is the criteria for admission to palliative care units is that people need to be really, because — because we have so few resources in that area, you really have to be quite certain that this person is in the final few weeks of their life, otherwise, they won’t take them.
The system is set up for this badly because you actually get penalized if patients stay longer than 30 days. Whereas a good proportion of, a fairly substantial proportion of people, admitted to palliative care units actually leave the place alive.
We have to create a situation where people don't get penalized for over surviving. You need to get situations where you'll accept people who have purely comfort- measures goals but may live for months. And we would call that more of like a chronic palliative thing or like a long-term palliative approach. And there are a lot of people out there like that. Long-term care is maybe not ideal. Palliative care is what they want, but they can't go there because the prognosis is too long.
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Dr. Downer: People tend to make very late transitions to a palliative approach. I mean, in my experience, the biggest barrier to initiating a palliative approach is that nobody brings it up. There are cultural factors about people being sort of death denying and stigma associated with discussing such things, sometimes opting for very aggressive therapies and not necessarily being prepared to accept limitations of medical care.
We have to start recognizing it in a bit more of a timely manner when somebody is nearing the end of their life. We've relied heavily on people to recognize this spontaneously on their own. And clinicians are notoriously bad at picking those up. So, we're not very accurate when we use our own provider mechanism.
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Dr. Downer: The big things that we need to do structurally, is start to create the infrastructure, change the rules so that the infrastructure will be used more equally and fairly and frequently so that we can unload acute care, and put better systems upstream to start to flag people earlier and start to push and nudge people to approach them and engage in this topic because that would lead, I think, ultimately to a better alignment of the care with the care needs.
People are always moving between settings, home to hospital, hospital to home, home to hospice to hospital to hospice — you're bouncing around constantly. And one of the things we are really terrible at, in healthcare in general, is transitions, right? It's always an opportunity for mistakes.
Also, palliative care is often kind of been a bit of a banker's hours service. We're not available after hours, on weekends, in many settings, or we're only available for our own patients. You can't start palliative care after hours and on weekends. That's the, the aspirational goal is the ability to start it for anyone at any time. I think that that's probably a two steps away from where we are now situation, where I think we need to get to the point where we can deliver good palliative care and supportive palliative care to people wherever they are 24/7.
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Dr. Downer: It will require some upfront investment. It will, right? Like we need to build some of this infrastructure to accommodate this. But acute care is so expensive — so expensive — and we rely on it for hotelling; more than $1,000 a day for somebody who would be happy in a bed that cost $300 a day.
We will always procrastinate on the important, to deal with the urgent, regardless of how important the urgent actually is. You know, we continue to leave our taxes to the last minute, and we never exercise, but we always pick up the phone. The challenge that we have here is trying to get people to deal with something that's super important before it becomes urgent.
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Balogiannis: Dr. Kieran Quinn is an internist and palliative care physician at Sinai Health System in Toronto.
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Dr. Kieran Quinn: My passion for palliative care really came from an experience as a resident in my first year in internal medicine after a night on call, and I was asked to see an older gentleman who had very advanced dementia. And his suffering was really palpable to anybody who came across him. He lived in a nursing home, he was completely bed bound, and his dementia was so, so advanced that he couldn't even recognize his own family members.
In the next day, I spoke to my staff physician who was supervising me and I said that this cannot be what our healthcare system is designed to do. I can't imagine that anybody who would tell you that this is what they would want for their life, if they found themselves in this circumstance, you know, repeatedly going back to hospital.
He said to me, at that point, the system is very difficult to change, but if you're persistent and you stay at it long enough, you might be able to just make a difference. And that's really what started my path around trying to improve care for people with diseases that led them to be near the end of their life.
There are countless frustrations, both at the individual level when dealing with people who you, you know, may not have the most realistic expectations given their circumstances, and that can be morally distressing. But more I would say that affects me is the systemic issues, that we just have some incredibly large gaps in our healthcare system to support people at certain stages of their life, because they don't fit into these buckets of eligibility criteria, or certain sectors are woefully underfunded and just aren't able to support the intense needs that people have as they approach the end of their life. So, it's navigating the system and trying to advocate and get what your patient needs that can be very, very frustrating when — when you just get, you know, nothing but roadblocks.
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Dr. Quinn: Most Canadians will tell you, if you ask them where, where would you like to die? Most people — the large majority up to about 80% of people — will tell you that they would like to die at home, if they could. And that's just sadly not the reality because the care needs that they have are not able to be met with the resources we have in our system. So, unless you have financial resources to hire extra additional private supports, and live in regions of the province that have better resources, or more developed and robust homecare programs that, unfortunately, there are large disparities in access to high quality end-of-life care in the places that you want to receive it. And those are all heavily intertwined with race and ethnicity and income and education, all of these socio-economic determinants of health, which ultimately really influence the quality of care that people get, including end of life care and palliative care.
There just simply isn't enough end of life care beds. Hospitals often will have specialized palliative care beds or palliative care units, and then there's hospices that
are more of a residential type of care setting with specialized end of life beds. That comprises only about 10 — less than 10% of all hospital beds in the entire province of Ontario.
There are 90,000 Ontarians who die every year. Our populations are getting older and sicker because of some of the miracles of medicine to help people live longer. It also means that they are accumulating an increasing number of medical issues and then their care needs become more intense. We need to find a way to build more beds to be able to care for these people because care at home can be challenging, and that's a whole other area that needs to be addressed.
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Dr. Quinn: And the last thing is really around barriers to home and community care. Everyone wants to be home — home is where the heart is. There are still ongoing significant gaps in funding and resourcing for home care. But we have to do with the best we can with what we've got currently, and what I'm hoping is that we can make those choices better in the future. I see some very positive signs that I hope will continue. And I think on both sides of the equation, at the policy level, people are recognizing the importance. And now I hope that we can just start to be innovative and implement solutions to these gaps and these problems.
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Balogiannis: Dr. Sandy Buckman is a palliative care physician and the medical director of the Freeman Centre for the Advancement of Palliative Care.
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Dr. Buckman: It's almost difficult to talk about palliative care in a uniform way across Ontario. You can take certain parts of a large metro area like the City of Toronto or Ottawa, for example, and you can have excellent palliative care — you have excellent in-hospital palliative care services, you have access to palliative care specialists to full interprofessional teams with huge amount of expertise. They are often hooked up with superb community-based programs. In certain areas, we have residential hospices and palliative care units, which are just incredible places.
So, we do know how to do it. Maybe that's a little bit of the frustration is that we have these centres in areas of excellence that provide really easily accessible, quickly responding, high- quality palliative care. And then there are others, of course, that — often more small town, more rural, remote — can provide very good personal care, but have more difficulty doing so. The other part of it has to do with the inequitable access of various different groups within Ontario. People of lower socio-economic status, racialized populations, any kind of the BIPOC code, can have more difficulty accessing us. There can be cultural issues, communication issues.
The long and short of it is that I think when we look at overall statistics, things are slowly improving from accessibility to high quality care services across the province is inequitable and could vastly be improved.
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Dr. Buckman: Well, I've actually founded and leading the development of a new residential hospice in North York. We actually hope to be putting a shovel in the soil this year, but it's a charitable basis. You know, real estate prices in Toronto, I — most rural Ontario actually has an advantage. This is a sort of inequity where you open up in a farmer's field. And there are some hospices, I know of a few, have been going for 25-30 years trying to raise the funds.
Why is palliative care not an essential service? Why do I have — my team and I — have to raise multi-millions to provide a service that should be essential. We have great centres, we have great service, we need to be able to improve upon that in many, many areas. And even within those areas that we provide great service, we need greater supports, we need far more support of primary care to provide palliative care in the community, we need to train far more team members in the field.
If you look at — the greatest example is the Windsor hospice. It's like a place where death and dying are, are normalized and legitimized, part of a compassionate communities approach, which is health-promoting palliative care. It's a whole movement about getting the community involved in normalizing, legitimizing death and dying because people are grieving, people are bereaved. And I think we have to understand that for palliative care.
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Dr. Buckman: So, the pandemic has taught us so many things. I'm going to go into the long-term care situation. We know that many people just died without any type of care. And even in the current state, many people who are living with frailty and many other diseases, they're all life limiting, don't get an opportunity really to talk about their hopes or wishes, goals of care, what they want. And they're often receiving treatment that they might not want. Even discussions around resuscitation.
We need to do better in integrating a long-term care approach in palliative care. It would be incredibly effective for patients and families and also cost effective. People wouldn't be ending up in the emergency room with, in these difficult situations, or being admitted to a hospital. We could do vastly better. So, we need to provide palliative care services in long-term care and as well in retirement homes and seniors in the community.
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Dr. Buckman: We have a ton of data that shows that investing in palliative care makes a huge difference. It's incredibly cost effective. So, if we had hospices, if we had improved healthcare, if we had 24/7. You know, imagine my group had the 24/7 call, we could manage 50%, 40% of the calls that we get that don't go to the emerge. You know what we're saving? Huge for a, a tiny little pittance of supporting physicians to do this. It's short-term pain, though for long-term gain because it's money up front.
Downtown Toronto, working with those various populations, particularly with, you know, a huge percentage of our homeless population is Indigenous, we probably have the largest population within the province in terms of the number of Indigenous peoples. We are working, you have to work with the Indigenous community. We began to do that as an example.
People with mental health problems — again, this requires collaboration, cooperation between the many facets of the healthcare system. You're directed to who that person is — their values, their goals, their culture, their faith. Whatever it is, you make it very person-centred and family-centred.
They are the steps that we have to take to achieve improved access and equitable distribution, no matter where a person lives or what backgrounds they are from or what their socio-economic status is. We have to reach that level for all Ontarians.
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Balogiannis: This podcast is brought to you by the Ontario Medical Association and is edited and produced by Jodi Crawford Productions. To learn more about the Ontario Medical Association, please visit oma.org.
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