Want to improve the end of life? Here’s how a McMaster researcher says it can be done

To many, palliative care is synonymous with the end of life. It’s often offered in the final weeks or months of life – when patients and their families are at their most vulnerable in the hopes of easing both the physical and emotional pain circling them near death. 

Palliative care offers a whole-person approach to care for patients and family caregivers, focusing on quality of life, not just treatment. 

Hsien Seow is one of the foremost experts on palliative care in Canada. He is a Canada Research Chair in Palliative Care and Health System Innovation and is a professor with McMaster University’s Department of Oncology. 

Seow has been working with Health Canada on creating education tools on palliative care that can be used by the public and by clinicians across the country, as well as leading education programs, hosting a podcast, and writing books. 

We spoke with Seow about palliative care in Canada and why he believes the system needs an overhaul, starting with how and when the first conversation about a palliative care approach begins. 

When people think of palliative care, they probably think about end of life. But you and some of your colleagues believe a different approach can be taken. What is that approach? 

Palliative care is an approach to care that looks at the whole person. This includes holistic care, and managing physical, spiritual, psychosocial, and emotional issues. The approach can complement curative treatment, it isn’t one or the other. Thus, for the patient and the family, a palliative approach to care should be offered early in an illness, even as early as the diagnosis. In the current model, palliative care specialists are often introduced when there’s nothing left to offer – when providers expect them to die in the next six months. There is absolutely a need for palliative care specialists, but the reality is, there’s just too many people who have needs to be cared for only by specialists. And the needs aren’t only at end of life, they’re all throughout the journey. So palliative care should not just be a specialty. It should be an approach that all health-care providers are able to offer. It’s everybody’s business.  

We as a field have been doing a lot of work to train all health-care providers on the basics of a palliative care approach. But it’s also important for patients and their families to know they can benefit from this approach early on in their illness. 

With that in mind then, what are three questions patients and their families should ask when they are diagnosed with a life-changing or serious illness? 

The first question I recommend is, ask your health-care provider what does it mean to have your serious illness? You’re aiming to find out if your illness is curable, will it get worse over time and will it shorten your life. 

Then you can ask the big second question: What can I expect now and into the future? Illnesses have a beginning, middle, late and end stage. Patients need to be able to understand where they are in the journey so that they can prepare and make good decisions.  

Finally, patients will want to ask: what is important to me? Really think about your personal values. Those values need to be infused at every decision along the journey. People are different, and they have different priorities. Knowing what is important to you, and then being able to communicate that, it is going to make the experience better. 

We can’t change the illness, but we can change the experience. And when you do these things, you’re going to be in a better position to take charge and have more choices about what to expect.  

These conversations can obviously be difficult. What’s the best way to start? 

You need to be brave and bold. You need to invite yourself and ask questions. You can’t wait for doctors to feel comfortable. In many cases, they’re reluctant to have these conversations because they worry, they will take away your hope. But information is power.  You can hope for the best and plan for the rest at the same time. 

At different parts of the palliative journey, there are a lot of things that can happen and there’s room for hope. But there’s also room for realism. Hope evolves. And people are resilient than they often give themselves credit for, when they have realistic information. 

I also recommend patients share their style with their doctors. Be clear that you want information straight up or the opposite. Maybe you like to live day to day, but it’s your partner who manages most things and they need to know what to expect. Know what your values and preferences are, communicate that to others, and don’t be afraid to invite yourself to the conversation. 

When someone understands the whole picture of their palliative care journey, how can it impact their planning? 

Every illness has a natural history of how it unfolds. If people understand this bigger picture, it can serve as a roadmap of what to expect along the way. With that information, people need to be able to understand the milestones along the way, what to prepare for, and the associated timelines for each stage of the disease. When you have this bigger picture, people might start using their time differently. They might make their interactions differently. They might even interact with the health system differently and say, ‘You know what? I don’t really want to spend the last three months of my life getting chemotherapy, I would rather spend two months on a beach with my family and feeling great and just letting my body die naturally.’ 

People need to know they have a right to understand the big picture of their illness, how it is likely to unfold, consider their values, and then think about how all health care decisions will impact them.