Palliative Care: Focused on the Physical and Emotional Health of People Living with Cancer
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A Q&A with Dr. Jonathan Ailon
Palliative care. Maybe you have questions about it. Or maybe you’ve heard of it, but feel it kinda sounds scary. We don’t blame you. The way palliative care has been discussed over the past several decades has caused a lot of misconceptions and confusion, mostly pertaining to end-of-life care, most of which just simply isn’t true.
So, we spoke to Dr. Jonathan Ailon, a physician at St Michael’s Hospital in Toronto who has a specialty in palliative medicine to decode and debunk misconceptions about palliative care. He told us about how palliative care has changed over the past several decades, who it can help and how. Read on to learn more.
Let’s start at the beginning – what is palliative care?
The word palliative comes from the medieval word ‘pallium’ which means to shield and protect. And that is the aim of palliative care – to protect patients from suffering and to support the best possible physical and emotional well-being. It doesn’t need to start when people are very sick or approaching end of life. Instead, it’s focused on treating the symptoms of the cancer and the symptoms of treating the cancer, and helping people live well with cancer.
Forty or fifty years ago, palliative care was primarily focused on end-of-life care, but professionals in the field have been working hard to evolve the approach of palliative care and improve how it’s understood.
Can you get a little more specific about what palliative care includes in the context of cancer?
A big part of what palliative care does is help people live with cancer. End-of-life care is also part of palliative care for individuals with more advanced illness.
Palliative care is about supporting physical and emotional health. We treat the symptoms of the cancer, and the symptoms of the cancer treatment, and the emotional impact having cancer can have on the individual.
We also try to understand the individual’s goals and care preferences. We can help them have a fulsome understanding of their illness, and we aim to have a growing understanding of their wishes. This includes honest conversations about what the outcomes of treatments may be.
And if the person’s illness progresses, palliative care has an integral goal to understand what the best possible quality of life is, but also what is the best quality of death. What does dignity mean to them? What are the resources they need? And how can we support them?
We also help people connect with community resources that will help them live their best life outside of the hospital. And we help support the well-being of the individual and families or care team, during the cancer journey.
What does the research say?
There have been studies that look at integrating early palliative care for people with advanced cancer, and what they showed is people lived better. They have lower symptom burdens, better illness understanding and there were better outcomes for families in terms of grief and bereavement. And surprisingly, they lived the same or longer than people who didn’t have early palliative care involvement.
A fulsome understanding of the illness and deliberate planning around treatment and care decisions will support the same or a longer life. As people get closer to end of life, a normal experience is to have anxiety and fear about death and want to have any treatment. But in actuality, some treatments like chemotherapy can actually shorten people’s lives when they already have advanced illness.
Why do you think more people aren’t accessing palliative care?
I think there are three contributing factors, and while well-intentioned, they are all based on the lingering idea that palliative care is only about end-of-life care and therein miss that palliative care is about supporting a better quality of life. There seems to be an idea that if you engage palliative care – or even talk about it – you “break the bubble” of hope.
First, sometimes healthcare professionals have a referral bias and only think about palliative care once they have exhausted all disease-targeting treatment options. Second, family and caregivers sometimes believe ‘if we keep only a potential cure in our minds and keep palliative care out,’ the person will live longer. Third, for patients with life-limiting illness, the thought of palliative care is very frightening. In a sense, avoiding palliative care can avoid being confronted with the reality that the illness is life-limiting. But we see when people come to learn about the value of palliative care, and understand it is more about improving life than about discussing death, they often benefit from it.
How are family members or caregivers involved in palliative care?
We always encourage collaborative meetings with patients and families because it’s equally essential that families share the knowledge – the illness, the implications, the treatments – and take a team-based approach to managing physical and emotional health. It’s also important to recognize that families can bear the weight of care responsibilities, and many people don’t realize there are many options available to support family and caregivers and prevent burnout. We can help them access them through community care services.
What are the steps someone should take if they aren’t accessing palliative care and they would like to?
The first step is to talk to their physician or nurse practitioner – this could be their oncologist or their primary care provider – and ask for palliative care involvement. There may be some pushback, but it would be rare for a patient to ask and be refused.
As a second step, try to educate yourself about palliative care. Two sources with great resources for people living with cancer and caregivers are Canadian Virtual Hospice and PlanWellGuide.com.
What is the one thing you want everyone to know about palliative care?
Palliative care does not need to start at the end of life. It’s about supporting people – supporting their physical and emotional wellbeing. Palliative Care is about helping individuals live the best possible life that they can.
Dr. Jonathan Ailon is an Assistant Professor in the Department of Medicine at the University of Toronto and is a specialist in General Internal Medicine and Palliative Medicine. He works as a Clinician Teacher at Saint Michael’s Hospital, an inner-city hospital affiliated with the University of Toronto.