Studying death and dying has taught Chris Lo the importance of living meaningfully.
As a research psychologist in Supportive Care at the Princess Margaret Cancer Centre, Chris' goal over the past decade has been to find ways to alleviate death anxiety and promote preparation for the end of life in patients with advanced-stage cancers.
Slowly, he noticed that his experiences with death were changing his perspective on life.
"Speaking with people near the end of life makes you realize your own mortality," he says. "As you struggle with that truth, you begin to think: death is frightening but there's nothing I can do to stop it from happening, when it's my time.
"The best I can do is to try to live in a life-affirming way. So I began to pursue things I had always regretted leaving behind."
Chris returned to acting and improvisation – pursuits he had given up early in his university career. He also took up the guitar and found a gift for music.
"My research at Princess Margaret has inspired me to do things that I never would have done otherwise," he says.
'It can rob people of hope'
Chris' research focuses on two main themes: alleviating death anxiety for patients who have reached end-of-life due to disease, and ensuring patients and their loved ones are equipped to have meaningful conversations about end-of-life care.
"We know that discussing death is difficult because it can rob people of hope," Chris says. "But avoiding planning with family or the healthcare team doesn't really make things better, and in fact, can make outcomes much worse.
"Without talking about death, no one is ready."
Working closely with Drs. Sarah Hales, Co-Lead, Psychosocial Oncology, Gary Rodin, Head, Supportive Care, and Camilla Zimmermann, Head, Palliative Care, Chris has helped to develop a guide to having conversations about the end-of-life.
He likens it to a map that helps healthcare professionals address a variety of topics with the patient and their loved ones, including the discussion of one's values and beliefs, changes in relationships and dependency needs, symptom management, advance care planning, and the promotion of a sense of life completion and legacy.
One of the foundational steps of this research was his development of a tool, the Death and Dying Distress Scale (DADDS), to assess death anxiety in patients with terminal illness.
"Oddly enough, despite its relevance to palliative care, there wasn't a measure of death anxiety that had been designed for patients facing this situation," Chris explains.
"I first pinned down the fear of death to two broad areas. One is the process of dying - will it be painful, will you be alone - which can be alleviated with good palliative care," he says. "The other is more psychosocial in nature – and that has to do with regrets about unfinished business and the effect of one's death on people close to them.
"More so than any other concern, people are most worried about the impact their dying will have on loved ones."
Using DADDS can also help patients to voice their fears to family and caregivers, and which can sometimes be resolved through simple conversations.
In one instance, a patient in the palliative care unit was completing the measure. With a family member in the room, the patient admitted their greatest fear was dying alone. Because no one had asked about death anxiety before, the patient's worries had never surfaced. The family member then was able to ensure that someone would be with the patient at all times, comforting the patient.
Contributing to the next generation
Designing tools to measure and alleviate death anxiety and encourage end-of-life planning propelled Christopher to start exploring some of the more positive outlooks at end of life.
"Almost universally among these patients, there's an idea of contributing to the next generation – this sense of having given to others more broadly," Chris explains. "This is a major source of comfort at end of life, and at root, it's a major source of meaning."
This is an area he's looking to research in the future: whether there's a way to measure or to empower dying patients who want to leave legacies that are meaningful to them.
"When you ask people what really matters to them, it's relationships," he says. "So is there a way for us to help patients strengthen the relationships they'll leave behind?"
One example is a young parent who left letters and videos for their children to open and view in the future. Another is a patient who had two estranged sides of the family and decided to spend the last year of life being the bridge between them – to leave a legacy of family peace.
"These are things that you'd have to think through, of course, which also entails really thinking about your mortality," he says.
"If you don't want to think about being at end of life, you may not think about life closure at all. So how do we start the conversations to enable this planning?"
A balancing act
Though there's been a shift in people's desires to talk about death publicly with the implementation of Medical Assistance in Dying as law across Canada, there are still barriers that remain.
"Culturally, it is definitely becoming easier to talk about this," Chris says. "The fact that assisted dying is law is important. But the larger conversation, just about death, is still hard because in society it seems like it's all or nothing.
"It's either all optimism, cure, and fight, or it's all failure – there's no hope portrayed in death. But it's really a balancing act.
"It's to hope for the best while preparing for the worst, to hope for what is achievable and to make the most of whatever time remains. Our research aims to help patients, families and care teams encourage that thinking."
