The Heart of Hospice (continued)

A month and a half ago I wrote a blog post that I entitled “Hospice volunteers: the heart of hospice.” I didn’t invent the term – it’s one I’ve encountered countless times over the years in my research, interviews with volunteers, conversations with death professionals, and visits to residential hospices. The term doesn’t mean that volunteers are the only people who provide the heart in hospice care. Rather, it points to the unique role that volunteers can play – they are the only ones whose primary role is to simply be with dying people and their families – to listen, to sit in silence, to share a book or story, to sing a favourite song, to visit the garden.

It was that role that drew me to hospice volunteering almost 17 years ago. I can still vividly remember the evening I walked into the orientation meeting. The fact that the meeting took place on September 11, 2001 could have something to do with why that evening is etched in my mind (yes, that September 11!) but it’s also the feeling I had when I entered the building. Somehow I knew I had entered sacred space (not a term I normally used, as I described myself as the “least spiritual person I know”). But there was something about the building, the space, the people who worked there, that told me something very special was happening inside.

That feeling remained with me for many years, as I volunteered in the residence each week. Though sometimes I felt that I might not be up to the task, my experiences in caring for my sister when she was dying had taught me that dying didn’t need to be scary. Indeed, when my sister died, I was by her side, singing to her, and after she breathed her last breath, I thanked her for making it “not scary.”

I’ve carried that knowledge with me ever since. And I’ve shared it with families as I accompanied them as the person they loved was dying. I’ve sat with people as they died when family couldn’t be there. And each time I’ve considered it an honour to be with someone as they left this world. And increasingly I felt that it was what I was meant to do (another phrase I never would have uttered before I became a hospice volunteer!)

After all these years, I know that it’s what I’m meant to do. As a life coach, I work with people to help them uncover their “life purpose,” something people feel they lack in this modern world of disposable everything, including jobs. Sometimes my clients will remark upon how “lucky” I am to have found my calling with hospice.  I was none too sure it was luck that brought me to hospice – more like the benefit I got from losing my beloved sister all those years ago. But yes, I would say, I am very blessed to be a hospice volunteer.

I am saying all this by way of explanation for why I wrote that post in late June. I was feeling that what the core of hospice volunteering was getting lost in all the busyness of our shifts. And as someone for whom “hope springs eternal,” I hoped that I could help us to recapture that core. In writing what I did, I never for one minute intended to point fingers at or criticize anyone. I was trying to identify a shift I felt had happened slowly over time in the culture of the place I loved.

I’m not going to detail here what’s happened since I posted that piece in late June. Suffice it to say, it’s been one of the most devastating experiences of my life (and trust me, I’ve had a few!). In the end, I chose to resign from my volunteer role with this hospice organization. Since then, I’ve been ricocheting through what Elisabeth Kubler-Ross identified as the five stages of grief, something that’s familiar to all of us in hospice work. Some days I’m bouncing between bargaining and denial. I sleep poorly, wake up remembering that I don’t have a weekly shift any more, and feel the sadness all over again.

Most days I trust that I’ll find other ways to serve dying people and their families. And in the meantime, I’m stepping up my work as a hospice palliative care activist and advocate. I’ll start visiting hospice residences that have opened since I did my original road trips a few years ago. I’ll lobby for greater access to hospice palliative care across the province and the country. And I’ll write this blog because I’m still a hospice volunteer – it’s in my heart and soul and I’ll continue to do this work wherever and whenever I can. Hospice is not a place – it’s a philosophy of care, a practice, and a way of being.

Thank you to everyone who commented on that June blog post. It meant a great deal to know I wasn’t alone. So please keep reading and sharing about the work that you do.