Drs Kim Acquaviva and Naheed Dosani will be teaming up at the for a passionate and insightful discussion on equity-oriented and justice-oriented palliative care. In their plenary entitled, , they will be examining fundamental systemic flaws and pushing for a paradigm shift to end stigmatisation for the many people who experience discrimination and poor end-of-life care due to multiple factors including precarious housing, mental health status and sexual orientation. Drs Acquaviva and Dosani were interviewed by Emily Adam, Specialist Trainee Registrar in Palliative Medicine, UK.
Emily Adam (EA): Could you each give a bit of a background about yourself and your previous work?
EA: Could you give a brief overview of the session you'll be giving at the Congress in October?
ND: Our focus is the idea that while we've made a lot of progress in advancing access to palliative care for people in countries like the United States and Canada, still, the way our systems are designed is that if you don't fit this normative kind of description, you're not going to get equitable high-quality access to palliative care. In our palliative care delivery systems, there are often a lot of assumptions that are made about your housing status, your mental health, your social supports, your sexual orientation, or the money in your bank account. So what Kim and I are going to do is start to explore the difference between equality and equity oriented palliative care, and through our own journeys describe how we got into this, and pass on some pearls of wisdom.
KA: I think what's exciting about this presentation is Naheed and I both do different work, yet very much similar work, in that we're trying to think of ways to make sure that people who are often pushed to the side receive the same high quality care that everyone else has access to. We'll be talking about equity oriented and justice-oriented strategies for increasing access and enhancing the delivery of inclusive palliative care.
EA: What led you into this work and why is it so important?
KA: I had just finished my masters in social work, and was working with people with HIV and AIDS. I was really interested in doing end of life care work, and then got my doctorate and became interested in sexuality and end of life. Then when working in a Hospice, I noticed that LGBTQIA patients and families weren't understood by people. Care teams treated them either nervously, anxiously or with outright bias. Clinicians would go into the room and bring their own religious beliefs to bear on the care that the patient was receiving, or make comments that weren't intended to be harmful, but were in fact harmful. During that time, I also lost my Mom to ovarian cancer when she was 52. As a queer family member, the experience of navigating hospice and palliative care was confusing. And I remember thinking at the time; this would be even harder if I were the patient, would they even know how to deal with me? And so the meandering journey of my career has taken me down a path where I'm continually revisiting those questions.
ND: I'm the son of two refugees who came to Canada in the 1970s, so I knew full well growing up that health inequities existed and can have devastating outcomes. As a first year resident trainee at the University of Toronto (over ten years ago), I cared for a young man in his early 30s with a widespread head and neck cancer who was simply looking for pain control, but was denied access to medicines that would treat his quality of life. I built a rapport and trust with him, and despite my best efforts, he died via an overdose from a combination of alcohol and drugs. It was too little, too late. This was a turning point in my life. It really showcased for me the haves and the have nots, and really begged the question of what a human life is worth. Further, it taught me that if we can't get it right at the end of life, well then, what are we really doing in healthcare? Where is the humanity? So my interest in global health and health equity became focused on palliative care, and I started to realize unhoused people in Toronto and across Canada are really suffering. People experiencing homelessness are 28 times more likely to have hepatitis C, 5 times more likely to have heart disease, and 4 times more likely to have cancer. Unhoused people in Canada live an average life expectancy of 34 to 47 years old. So their life spans are half of those who have homes. Homelessness is a terminal diagnosis of the social determinants of health. It is a palliative care illness. So I pursued further training, connected with people across Canada and around the world, and started the PEACH program on July 1st, 2014. In fact, it started out of the back of my Honda Civic, working one day a week with a street nurse, and fast forward 10 years later, we've cared for 1000 clients. The PEACH program is a 24/7 model of care with 7 Palliative care doctors, a psychiatrist, 3 nurses, 2 Social Workers, a peer worker and a home care coordinator, caring for 120-130 clients on caseload at any time. Furthermore, it's been replicated in cities across Canada and around the world; and is now the standard of care for what equity-oriented palliative care should look like for structurally vulnerable populations.
EA: Can you describe some of the challenges around equity in palliative care?
ND: A lot of our palliative care models make major assumptions about the social circumstances of the people we care for. We call it 鈥榟ome鈥� palliative care in the community a lot of the time. Well, what if you don't have a home? Over 300,000 Canadians experience homelessness each year, and that's a huge undercount. So there's a structural incongruence with our ability to deliver palliative care for people who don't have homes. There's a lot of assumptions that people have family and support. What about those who are socially isolated and can't fill in the extra hours when home care isn't around to provide support for people who want to be at home? The way we practice is often stigmatizing and perpetuates those stigmas. The fact that the palliative medicine community still has not fully adopted harm reduction as a best practice basically means that if you're a person who uses drugs, you'll probably never get the high quality access to palliative care that you deserve.
KA: For LGBTQIA individuals in the United States, we have many palliative care programs that do not have an LGBTQIA inclusive, non-discrimination statement saying that at the bare minimum, they won't treat people badly because of their sexual orientation or gender identity. That is a very real and tangible barrier for accessing care. When my wife was dying, we had palliative care, which was fantastic. But when it came time to consider hospice care, we discovered that there were no hospice programs in Charlottesville that had an inclusive, non-discrimination statement that said they would do the bare minimum of not treating us badly because of who we are. So she died at home without hospice care because of that. Also in the United States we are still not teaching medical and nursing students to ask people questions about their sex assigned at birth and their current gender identity, and role modelling; what our pronouns are, asking people what name they want to be called. We've known for over 10 years that it鈥檚 best practice to ask a 2 step sex and gender question, but people aren't teaching it. So many LGBTQIA plus people feel unseen and unheard. And that in itself is a barrier to accessing care. When you think about palliative care, someone with a serious or life limiting illness is already vulnerable. The last thing they need is to feel judged or treated differently because of who they are. In the United States, where there are lots of people with very strong religious beliefs, around homosexuality in particular, but also around people who are trans, that can be pretty scary for folks to access care and not know if they're going to be treated poorly because of the religious beliefs of the provider who's caring for them.
EA: Many interdisciplinary professionals from around the world will be hearing you talk at the Congress. How do you see the role of the Congress in the international palliative care landscape?
KA: I think it plays an essential role. It is the place where people from around the world are coming together to have dialogue around the issues of greatest importance to palliative care. It's not a typical conference where people just go to listen to someone drone on about their work. It's a conversation starter. And the people in the room are the people to have those conversations with us. We can ask tough questions of each other and of ourselves; How are we falling short in our own practice? How's our organization falling short in increasing access? I see it as an incubator for progress.
ND: The Congress is an interesting place where hopefully Kim and I can also be provocative and challenge people to think differently about how we can do more, and to perhaps think about how palliative care in general needs to be transformed and redefined. To think about a paradigm shift around equity. I think that's what our session is really going to zone in on.
EA: Palliative care has always been a speciality that has had to fight to get its voice heard, but you both go one step further and extend it to the people that have to fight to get their voices heard. How as palliative care professionals, can we be advocates for our specialty and the things we're passionate about?
KA: As an academic, but also as a social worker, a human, and a widow, I've come to believe that data and facts really change the way people think, but stories change peoples鈥� hearts. So we need to keep telling the stories, as well as using the data and facts. Because when you put those two together, you help people understand what needs to change and why changing it now is imperative.
ND: We need to really centre the voices of people with lived experiences to be able to speak for themselves about what they need. We've done a lot of great things over the last few decades in palliative care as a field, but when it comes to equity deserving populations, we haven't really listened to them and their needs. We haven't supported them enough and we haven't resourced communities who are in greatest need. If we did, we probably wouldn't have designed our models in the way that they are delivered now. So hopefully through our talk, people will get a better sense of why it's important to centre the voices of people with lived experiences so that we can empower those voices and resource those voices to make change.
EA: The last word is yours, are there any final messages that you'd like to convey?
KA: When we are looking at palliative care, we need to look at it as the germ of a good idea that needs to be totally different. In the United States, so much of what we do in terms of end of life care has been shaped by reimbursement models. For example, our vision for hospice care was shaped around what Medicare would pay for. But if we were to wipe the slate clean, what do we really need? Let's be excited about what we've accomplished in palliative care, but be visionary about reinventing it.
ND: What I'd love at the congress is for us to talk more about what is driving the inequities in the social determinants of health. If we think palliative care is immune to the factors that are driving inequities in the social determinants of health such as racism, xenophobia, transphobia, colonialism, capitalism, ableism, then we're wrong. We need to start normalizing conversations about these factors, and only then will we be able to actually address inequities in the social determinants of health for equity deserving populations.
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