Lessons in Helping

I learned a lot about death and dying before I knew much about palliative care. My career began at an emergency shelter that provided drop-in and shelter services to about 200 people daily. I was fresh out of my undergraduate program and eager to help this community – not yet sure what this would look like. Those using the shelter were bright, strong, and full of funny stories and quick comebacks. I was shocked to see the depths of pain and suffering this community was experiencing, and amazed at the resiliency I saw every day.  

The shelter was a challenging place to be. Staff members responded to multiple overdoses daily. Often, members of the shelter community had started their own overdose response by the time we got there with naloxone kits. I’d often see people who were struggling with their own problems step up to care for their friend who was sick or in need of food or clothes. These examples showed me that this was a community that had the tools and knowledge to care for itself limited only by structurally imposed poverty and homelessness.

Another thing I learned is how ill-equipped the medical system is to meet the needs of people who are living in poverty. The lack of primary care in the city meant very few people staying at the shelter had a family physician and health issues could spin out-of-control quickly. There were limited options once a health issue reached the point of requiring emergency intervention.

I regularly witnessed people going to the hospital, waiting hours in the emergency room or waiting days in a hospital bed. Loneliness, boredom, challenges navigating the healthcare system, and stressful and harmful interactions with healthcare staff create intolerable conditions and prompt people to return to the familiarity of the shelter. As people bounce between hospital and shelter their health continues to deteriorate. Eventually, the shelter becomes unable to support someone so unwell with serious health issues.

Sometimes a hospital social worker or family member would tell us the person we’d been worrying about had died. Often, that person just stopped coming back, and we reluctantly “moved on” with the assumption that what we’d been anticipating for months had happened.

I moved on from the shelter after a few years and continued to work with people who were homeless or vulnerably housed. I crossed paths with the clinicians of the Palliative Outreach Resource Team (PORT), a newly-formed service that had begun after a decade of street nurses and frontline workers advocated for an end to unjust deaths. I joined the team as an outreach worker feeling equally hopeful and suspicious. I was eager to see change, but knowing the struggles of the communities I worked in, how was our little team going to do anything differently?

The first person I worked with in my role was a kind, quiet, and proud man. We met in the emergency room. I sat with him as a physician diagnosed him with cancer and gave him a few months to live. After that, I dropped him off at his little apartment, sparsely furnished with a sleeping bag in the middle of the floor, and little food in the cupboards. The injustice and absurdity of the situation was incomprehensible but helped me understand why people had been advocating so long for a team like PORT.

When I returned a few days later, I was ready and motivated to get in there and help. I had brainstormed some ideas like good food, new medications, and phone calls to his estranged family. I assumed I knew what he needed, and I was ready to do it all. That’s why I was so surprised at his request that day: suspenders and a bedside lamp. “Okay,” I said, “That’s fine but what about all these other ideas I have?” “No thank you, just the suspenders and lamp please.”

He explained that he had been doing research and knew that he would start losing weight, and spending more time in bed as his cancer progressed. He just wanted to make sure he’d be comfortable for that time. The thrift store was too far for him to bus, so he just needed me to give him a ride, “please.”

These were my first lessons in helping. First, don’t assume you know what people need because you’re probably going to be wrong. Second, don’t think that someone becomes helpless as soon as you’re there to help them. This man had survived a lifetime of poverty and unjust circumstances and had the tools he needed to keep surviving. All he needed from me was a ride to the thrift store. That was enough.

From there, the lessons in helping kept coming. Have you ever snuck a cat into a hospital? I can tell you, it’s not easy. First, you’ve got to catch the cat who is terrified because her mama has been in the hospital for weeks and you’re yet another strange staff member barging into her supportive housing unit. Lugging a large, yowling pet carrier down the halls of a very quiet hospital invites all sorts of attention you’re trying to avoid. Once you’ve got the cat in the hospital room, it takes a coordinated effort to ensure nobody barges in and exposes the furry-little-secret. This was not a task I could have pulled off alone – it required coordination with others to access the spaces and stand guard while cat and mama enjoyed some snuggles.

The systems we work in are very fractured and disconnected – my advice is to find co-conspirators who will use their knowledge to help you navigate barriers and rules in creative ways to meet the needs of the person you’re supporting. 

Some of the biggest lessons came in small moments. One of the most intimidating things about supporting someone who is dying is the feeling that you need to accomplish so much in a race against the clock. Really, though, dying is often a slowing down and softening as someone reaches the end of their life. You start to slow down with that person, appreciating the small pleasure of a good meal or an afternoon sitting in the sunshine telling stories. And the stories are fascinating, of course: bank robberies, car crashes, partying with Mick Jagger. But there are quieter stories as well: lost children, broken relationships, regrets and mistakes.

To sit with someone as they review their life is a monumental gift and an important act of service. When I think of all the time I spent alongside clients of PORT, these are the moments that stick out to me as the most meaningful and important. Quiet, gentle moments where someone feels safe enough to explore the story of their life with you.

The longer I did this work, the more my understanding of helping and my identity as a helper changed. Every person I met was a lesson in open-minded listening and not assigning my values onto the lives of others. I had to shed the idea that I was there to single-handedly fix the problems that plagued people. Over time, I saw that I was there to use my power, privilege, and resources to highlight and circumvent barriers in systems, and advocate for their removal. I was never there to “carry” people I worked with down a path; I was there to contribute to clearing the path for everyone.

I started my career by jumping into the overdose crisis and spending every day fearful of death. It’s ironic that it took an introduction to palliative care to really start understanding the importance of living well. Death never feels far away when working with people who have been marginalized and harmed by systems because poverty and social exclusion create conditions where it is hard to access good health care.  

Incorporating a palliative approach to care into practice provides a framework to focus on well-being and self-determination. This approach gives you freedom to slow down, focus on the small things that are often the most important, find allies to help you along the way, and most importantly, listen to the person you are there to support. You don’t need to know everything to be a helper, you just need to know how to listen. The person you’re there to help already knows what they need, and you already know how to help make it happen.

Robyn Kyle is a current UVic Masters of Social Work student and, formerly, the outreach worker with the Palliative Outreach Resource Team in Victoria, BC.