What caring for Joe taught me about privilege, forgiveness, and love

Folks facing life-limiting illness often find themselves wading through uncomfortable feelings such as fear, uncertainty, grief, regret, hopelessness, disappointment, anger, and confusion. These emotions are a normal part of facing one’s mortality, and with the support of family, friends, and professional service providers, these feelings can be faced and processed on the journey toward end of life.

Now imagine facing the end of your life without the consistent support and comforting care that loved ones and professionals can provide. Imagine also living in poverty, and suffering with untreated mental illness. Not only are you journeying toward end of life full of difficult feelings, but due to your life circumstances, you may also be experiencing multiple and intersecting discrimination and stigma, and a lack of meaningful resources.

Receiving a diagnosis of a life limiting illness is uprooting. Receiving that same diagnosis without equitable access to palliative resources, services, and companionship is inhumane.

Fortunately, ePAC and PORT (Palliative Outreach Response Team) are working hard to break down the barriers to compassionate and consistent end of life care for people who face inequities and declining health in Victoria, BC. As a member of the ePAC Crew, I had the profound privilege of supporting one such client in the final six weeks of his life.

On Valentine’s Day this year, I was introduced to a PORT client, a gentle-souled man named Joe in need of a supportive friend. When I met Joe, he didn’t have the resources that many of us easily take for granted, including close friends or family, and was facing end of life in relative isolation.

As Joe and I got to know each other, and I earned his trust, he began to share more of himself with me. I learned that he was an artist, a fan of music, a connoisseur of film and history books, and a lover of being outdoors with the sun on his face. Joe was a sensitive sort, happy to pass the time in his own good company, but also grateful for friendship, laughter, and intimate conversation.

As his illness progressed, Joe revealed that he had been estranged from his family for many years. He expressed deep remorse in having lost touch with them, particularly his son, and asked if we could try to find them. With only a name, and having no idea where this leap of faith would lead, I began searching for Joe’s family. To my surprise I found his ex-partner online fairly easily, and though Joe was prepared for a negative response, her note back to me was simple and kind. It read, “How can I help?”

Within a week of finding them online, Joe was reunited with his sister and brother-in-law, and the following week with his nieces, and his son, who he hadn’t seen in 25 years. Joe and his family were gifted the opportunity to say, “hello,” and then, “goodbye,” within three weeks of Joe dying. This is one example of the myriad of special ways that ePAC and PORT are able to provide comforting care and improve quality of life for individuals and their loved ones facing end of life.

In the six weeks that I had the genuine pleasure of spending time with Joe, I experienced many firsts in my practice as a Death Doula, and I was forced to look at my own privilege and prejudice on a daily basis. I’m used to working with folks who already have a network of support to rely on, including loved ones, financial stability, and access to a variety of wellness services. In contrast, Joe was living with an understandable lack of trust in institutions, and experiencing the ever-changing health care team and room change that so often accompanies long hospital stays. Without the consistency that a well-established community of care can provide, Joe was often in an anxious state when we met.

Joe’s needs were very high because he was dealing with multiple inequities, and his needs were unique to him. On a practical level, along with searching for his family, Joe also needed help with documenting end of life wishes for the care of his body and the allocation of his modest finances. On a physical level, Joe needed and benefited from assistance getting outside, gentle movement, and comforting touch. On an emotional level, Joe needed the regular presence of a friend.

PORT is successful because they work to support each client individually and holistically. The next client that I’m fortunate enough to support will come with their own unique story and needs, and thanks to the research and program development of ePAC, we are continually getting better at recognizing and fulfilling those needs.

Due to the COVID-19 pandemic, visiting Joe became challenging in the last days of his life. Because Joe didn’t have a phone, his sister and I relied on communicating to Joe through the caring and attentive social worker on his unit. We sent daily emails which she would print out and read to Joe. When Joe was moved to the Victoria Hospice, which the PORT team had been tirelessly advocating for, his newly found family were no longer able to visit due to COVID-19. Due to the strange circumstances, I had the special honour of spending the last seven hours of Joe’s life with him. His sister was able to be with Joe over my phone, and he was lovingly and skillfully supported by the exemplary medical team at Victoria Hospice.

I received countless gifts from having the privilege of meeting and spending time with Joe. When I think of him now, I’m reminded of courage, vulnerability, love, compassion, gratitude and kindness. Joe had a family that loved him and forgave him when he believed he was unforgiveable. Along with his sense of humour and warmth, meeting Joe’s family and witnessing their kindness, love and forgiveness in action will stay with me forever.

A tenet that I live by in my practice is that no one should die alone. Thanks to ePAC, PORT, and the ePAC Crew, Joe’s final wishes were fulfilled, and he died supported by community, knowing that he was loved.

Jenafor Ryane, Death Doula & ePAC Crew Member

Equity in Palliative Approaches to care (ePAC) is a community collaborative informed by a research program led out of the University of Victoria. 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.