End-of-Life Care is Everyone’s Business: How Compassionate Communities Help Bridge the Support Gap
By Bonnie Tompkins, Compassionate Communities National Lead, Pallium Canada
In 2010, Ian, my partner, learned he had terminal cancer. In 2014 he was in the final weeks of his cancer journey – and I became his sole caregiver. We did not have a primary care provider at the time. His family physician had died a few months before, and the palliative care physician in our community had a four-month waiting list. We were left in the lurch.
I was in university, finishing my public health degree. Ian didn’t want me to quit school. But I was experiencing all those extra pressures caregivers often go through.
That’s when my neighbours stepped in.
People would visit Ian while I was attending classes. Sometimes they would bring me dinner or wine. They mowed my lawn. They planted my vegetable garden. This reduced my anxiety on many levels.
Even after Ian passed away, my neighbours offered to help for several months. One of them, an incredibly busy mother of four, walked my dog twice a day, every day. Another neighbour helped open up the house for the summer and closed it back up in the fall.
All of this added up to a huge amount of support. That is the essence of Compassionate Communities.
Defining Compassionate Communities
Compassionate Communities started as a social movement in the United Kingdom. It is built around the topic of death, dying, loss and care.
Basically, it is a theory of practice where:
· people see palliative and end-of-life care as a community responsibility, and
· the community helps bridge gaps in health and social care.
The Compassionate Communities concept has three social aims:
1. This includes sickness and health, love and loss, and birth and death. Once we accept those cycles, it makes us more comfortable, more open and better prepared at the time of end of life.
2. We have to stop thinking death only happens in certain places. The truth is, we interact daily with people who are affected by death, dying, loss and caregiving, even if we’re not aware of it.
3. It’s not just about health professionals and social service workers. Every single person plays an important part in a Compassionate Community.
Enhancing health care – together
Compassionate Communities are a complement to health care; they’re not supposed to be a replacement. It’s about everyone working together. If we can support patients and caregivers as health care providers and neighbours, then we’re providing more support.
It really doesn’t matter who you are or what you do. The biggest piece of Compassionate Communities is that absolutely anyone can do it. For example, there is no reason why you can’t cross the street and help someone, as my neighbours did. Or, if you operate a business, you can make sure your staff are aware of Employment Insurance benefits or leave programs, in the event a staff member needs to care for a family member.
Cost-effective support. Certainly, there is more focus than ever before in Canada on senior citizens. However, the bulk of public health services continue to focus on the early part of life, despite the fact that death, dying, loss and care affect the whole population.
You may be surprised to learn that the model of Compassionate Communities is that care can be provided without any new funding (or not much). It’s actually about what’s going on around us.
Look around your community, and you’ll quickly realize there’s a lot of cool stuff going on already. Compassionate Communities is about finding things that are complementary or that could be tweaked just slightly to enable everyone to work and provide care
I believe that if we can achieve the social changes that Compassionate Communities promotes, our country can provide a better quality of life for patients, caregivers and even families.
Compassionate Communities works. I know this not only because of my experience as a public health worker but also because of my personal experience, in the last days of my partner’s life. Compassionate Communities worked for me, and
Even the smallest effort can make a huge difference – especially when everyone participates. That’s when all those little teeny things add up to an enormous amount of help for people in need.
When you think about the impact it can have on society, the concept of Compassionate Communities just makes sense for all Canadians.
This article was written in partnership with Pallium Canada.
Pallium Canada is a national organization dedicated to palliative care education for all providers, as well as mobilizing Compassionate Communities. For more information about Pallium Canada, visit www.pallium.ca.