By Ashley Mollison & Kara Whitlock
On behalf of our ePAC collaborative and with deep gratitude to our Inner City Action Team and ePAC Crew
“So I was one of the people that would not go to a hospital no matter what […] A lot of the people I know did not want to go there when they were really sick, and they didn't want to die in a hospital because of, you know, how would they get treated. So when this [advance care planning] came up, I found out that you had a choice, you could die at home with, you know, with your friends or family or whoever. You don't have to be in the hospital […] And so with this, we have a choice. We can choose, if, when that does happen. If we want to, you know, be in the hospital or be with our family, friends, whoever that may be. That's why this document is really beneficial. You can decide if you want to be cremated, and where your stuff is going to go, because before we didn't have a say.”
– ePAC Action Team participant
Members of our ePAC Inner City Action Team. Thanks to Chad Hipolito for the photo.
For years, workers and street family have witnessed their peers, clients, and loved ones end up in hospitals and other healthcare settings without their wishes documented and unable to speak for themselves. Without an equity-informed approach to ACP, “chosen” family caregivers are often unprepared to make important decisions, or they are excluded from these decisions altogether- leaving them dismissed, disrespected, and distraught.
At an ePAC meeting last year, Paige Phillips, formerly of SOLID Outreach Society, said she had gone through the 40-page “My Voice” document – a document used in British Columbia to support advance care planning. Paige pulled out some key questions that had come up in her interactions supporting people she loved and cared about in hospital. Inspired by Paige and her deep wisdom working with people in the inner city we began working with her initial drafts to create an advance care planning document and guide. We spent over a year workshopping it with our Inner City Action Team made up of housing, shelter, support, and peer workers from six inner city organizations. We held workshops at various organizations in Victoria to talk about the issues that were most important to people living in poverty, homeless, and facing class-based discrimination and racism in the healthcare system.
In our workshops, people were blown away to learn that you could write down what you want and that it would (or should) be respected in the healthcare system. They expressed a strong desire to name people who they wanted contacted should they wind up in the hospital, who should speak for them if they couldn’t speak for themselves, and to choose what should happen with their belongings.
As we began sharing the ACP with people working in the housing and healthcare system, they talked about their distress of not knowing who to call if someone overdosed or became seriously ill – did their clients have a “chosen” or “street family” that they would want to be part of their care? Did they have any connections with their biological family? What to do with their belongings left in the unit? We heard from hospital social workers that they are often tasked with figuring out who the person’s decision maker is, and they strongly supported a shortened, adapted version that could be used by a multitude of their patients who didn’t have access to mainstream ACP resources.
Advance care planning is always important but it can become even more significant in the context of structural inequities and barriers to care. The harms of poverty, the life-limiting effects of homelessness and racism, and the overdose crisis often result in unexpected and early deaths grimly exposing how desperately early planning is needed. People facing discrimination (and their family members) are less likely to be believed and listened to – so having a documented plan to fall back on is essential.
Whereas many people in the ‘general’ population avoid advance care planning, the people in our research program understand advance care planning as a tool for empowerment, as a chance to be heard, and as a way to push back against experiences of dismissal, disrespect, and paternalism in health care.
We are so excited to finally share our ACP work including our adapted ACP tools. ACP doesn’t fix structural barriers to care, but it’s a starting point to reorient care towards autonomy and self-determination. Equity-informed ACP means expanding our definition of care to include the relationships where people say they experience the most trust and love. It’s an opportunity to shift the way we think about help and caring to include asking people about their values and priorities. We look forward to hearing your feedback on these tools!
Ashley Mollison coordinates the ePAC collaborative & Kara Whitlock is the ePAC research assistant. Equity in Palliative Approaches to care (ePAC) is a community collaborative informed by a research program led out of the University of Victoria (PI, Dr. Kelli Stajduhar). Members of the collaborative work together to conduct research with local, national and international partners, and develop resources and tools, programs, and services aimed at improving access to quality care for people facing the end-of-life and who also face inequities like homelessness, poverty, isolation, racism, and stigma.
Website: www.equityinpalliativecare.com
Email: equitableaccess@uvic.ca
Twitter: @access2care