Improving equity in access to palliative care

On March 1, 2023, Healthcare Excellence Canada (HEC) and the Canadian Partnership Against Cancer (the Partnership) announced the first 10 communities to receive support through a new program called Improving Equity in Access to Palliative Care. This initiative, launched in 2022, is a partnership between HEC and the Partnership that focuses on improving access to palliative approaches to care with and for people who are experiencing homelessness or vulnerable housing in Canada.

The first cohort was selected in fall of last year and will participate in the program until 2026. The cohort spans seven provinces across Canada and includes urban, rural and remote settings. Each project will receive funding of up to $100,000 over four years.

A second cohort is planned to start in 2024. In total, up to 20 communities will be part of the program.

Dr. Naheed Dosani, a palliative care physician based in Toronto, is the co-chair of the Steering Committee for the program. He is also a health equity expert advisor at the Partnership. We spoke with Dr. Dosani to learn about this new program, why equity matters in palliative care, and what drives him in this work. The interview was conducted in late February 2023.

As a co-chair of Steering Committee for this program and a health equity advisor at the Partnership, how are you involved in this initiative?

Through my role as a health equity advisor, I have been working with colleagues to make palliative care more accessible for structurally vulnerable populations. In this role, I am using my experience as an advocate, health system leader and front-line clinician to support, mentor and guide communities across the country who are trying to inspire and effect local change in their communities. It’s important to remember that this initiative is not just about funding new programs. It’s about learning. It’s about building a community of practice through networking opportunities with peers and experts.

Ultimately, this program will provide the opportunity for teams across Canada to co-design, implement, measure and evaluate equity-informed palliative care approaches. It’s about building a better system.

Why is equity important in palliative care, particularly for people who experience homelessness?

A lot of our community-based palliative care systems have been built in a way that structurally exclude people who do not have access to the social determinants of health that many of us often take for granted, like having a home. Our healthcare and social care systems often make assumptions that a person will have a stable roof over their head, money in their bank account, a phone, a network of family members or caregivers. Yet, many people who experience poverty and homelessness don’t actually have those things. So, what it means is that as people who are on the streets and in shelters get older and they start to progress through their illnesses, like cancer for example, they don’t always get access to the community-based care supports that they need and are typically available to other people. The result is devastating. Unhoused people live a life expectancy of around 34 to 47 years. They often experience significant symptoms. And worst of all, many face these circumstances alone, in isolation. This is exactly why we must urgently do all we can to improve our palliative care systems so that we are able to meet people where they’re at. A firm understanding of what health equity exactly is, is vital in achieving that.

Is cancer prevalent in the populations experiencing vulnerable housing?

People experiencing homelessness are four times more likely to have cancer compared to the rest of Canada. Personally speaking, as someone who’s provided palliative care for unhoused people on the streets for many years, I’ve come across so many people who are suffering due to cancer. And so, to me, it really makes a lot of sense that HEC and the Partnership would come together to share their expertise and perspectives to help communities make measurable improvement in access to palliative care for vulnerably housed people.

Both organizations have a set of ethos that are anchored in social accountability, and I think this project really brings that to the forefront.

What are some of the barriers experienced by people who are unhoused when it comes to accessing palliative care?

I think the first barrier is that the system we’ve designed, such as home care, structurally exclude people who do not have homes. For instance, if someone does not have a fixed address they cannot access home care services, and this means that a multitude of community services are unavailable to them. The second thing is that our palliative care systems often lack the specific supports that some people who experience homelessness need, like integrated mental health care and substance use supports. People who experience homelessness often feel that they are not welcome in typical mainstream healthcare settings, particularly because during their lives, some of them have experienced significant trauma while interacting with the medical system. And so, in their most vulnerable moments, they do not feel like they are welcome or included in hospital-based palliative care units or community-based hospices. As a consequence, people often deal with their medical illnesses and care issues on their own, in their street-based communities and with their street family.

While there is a resilience that exists in these communities, what it means is that many people don’t get access to the resources, supports and care that they need. The result? Many suffer as they approach end of life.

In the years that you’ve been involved in palliative care, have these issues gotten worse?

Certainly. What we’ve seen over the last few years is a widening gap between the haves and the have-nots, coupled with the COVID-19 pandemic. People experiencing homelessness in Canada have been hanging by a thread, and that thread has snapped. We’re seeing more people living on the streets and in shelters than ever before. More people who are sleeping rough and in encampment communities. This is all super imposed on a weakening social safety net that is impacting health care, social services and other sectors as well. The result is that many more people are falling through the cracks.

As a physician, what drew you to palliative care?

I always knew that health care could be a powerful conduit for social change. While working as a trainee in my residency program over a decade ago, I ended up working at a local shelter in Toronto where I cared for a young man who had a widespread head and neck cancer. He presented to our shelter in pain and crisis, and unfortunately, due to his mental illness and marginalization, was not able to follow up for his cancer care. What he needed was palliative care, but he could not access it. He eventually died due to an opioid overdose. This incident stuck with me and still to this day, quite frankly, haunts me that in a country as advanced and wealthy as Canada, we still have people who lack equitable access to end-of-life care. Palliative care is a fundamental human right that everyone should have access to.

I fell in love with palliative care because it is person-centered and because, fundamentally, it is a grassroots movement that was originally led by patients and caregivers who wanted a different approach to how their diseases were being dealt with. Now my colleagues and I are pivoting that grassroots advocacy towards a health equity approach to palliative care for society’s most vulnerable people.

The guiding principles of palliative care are based on dignity and compassion. How do you centre those values for the ones who are among the most marginalized in our communities?

The first way we approach that is to always meet people where they are at. That can mean in a geographical sense – conducting a visit for a client in an alleyway or a park or a shelter – but also in an emotional sense. Sometimes we are very quick in health care to apply a medical model of care and that doesn’t always work for some people. Some people want to be just heard, or want to focus on their finances or housing, or help with forms that need to be filled out. Some just need a bit of company to feel welcome and included.

We also have to recognize that many of the people we care for have faced significant trauma at the hands of health care, in clinics or hospitals. As a result, they may not actually be comfortable meeting a healthcare worker in a clinic or a hospital. But if we apply a trauma-informed care lens, often, we find that we are able to build trust, a connection and rapport, that can develop into a therapeutic relationship.

The Improving Equity in Access to Palliative Care initiative is a trauma-informed, macro-level policy response to the fact it is unacceptable that structurally vulnerable people are suffering as they approach end of life in this country.

I think this is something to be very proud of and it’s something that we need to continue to build on in our healthcare systems.

I feel very honoured to be a part of this program and an organization that isn’t just talking the talk when it comes to equity, but is walking the walk too.