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.
I was very sad when I read your recent article Sad that you had to leave the hospice. Sad that they made your life so difficult But happy that you are taking on the advocacy role more actively People in charge do not listen to people like me but they do listen to “experts” in the field
You are a spiritual person I think which is not the same as a religious person
I love you Let’s talk. Fri or sat evening work for me
Judy
Sent from my iPhone
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Thanks Judy. I really appreciate your support.
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As you move through this transition remember
the labyrinth. You walk along joyfully and all of a sudden there is a turn — it shifts your view and many times your experience— the goal for labyrinth walkers is to keep walking. Sometimes you must pause and reflect at these turns but trust the path ahead— it does keep going. Appreciate the path behind you and accept a new direction when you are ready. There is no right or wrong way to walk a labyrinth— everyone does it their own way. Your way will be unique to you. Be open and mindful as you go forward. You are not alone Katherine— many many people support you.
I am pleased to count you as a friend— one thing you taught me is that our ideas and insights about any “status quo” is first met with denial and anger- blaming and shaming. Over time change occurs but often after our efforts.
As an example look at the expert witness job that you testified about lesbian/gay parenting. You had valuable experience to share and excellent sources of research. Change occurred over time- often when you least expected it to happen.
Your blog post under “concern” has aroused many denials and anger. This will open the organization to change— sooner or later.
It is the nature of leadership for you to have climbed the tree in the forest to point the way.
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Thanks Dianne for this beautiful message and your reminder to me of the labyrinth and of the process of change. I know you too have had experiences of being the one who says “the emperor has no clothes!” and ends up being ostracized for your honesty. So many volunteers and others have come forward to support me, and it helps to break that feeling of isolation that the process with hospice created.
sending my love, Katherine
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Katherine, thank you for your courage in writing this post and tackling it in a professional manner. Organizations truly need to hear your story. I mean really hear your story. While change is often unavoidable, how an organization implements change is within their control. Volunteers, in my humble experience are the mission voices. They are the ones who are connected to mission goals and keep us focused on why we became organizations in the first place. Volunteers come with passion, oftentimes having had their own profound experience. Volunteers are the ones who can help organizations go through change while keeping the essence of the work alive. How? By having honest conversations with volunteers and asking questions such as, “how can we keep our focus on our clients while changing XYZ?” “Will you help us retain our mission while we have to ABC?”
Your new role, my friend, may be daunting, and you may grieve for what once was. But, your courage and fortitude and unwavering commitment to serving others will see you through. And, you have many of us out here supporting you.
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Love this!!!
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As bad as it was, I found value in your experience and in the posts that followed it. I have also found myself out in the cold in volunteer work due to “uproar”. I found the uproar more damaging than I could support by staying, and I left. The spirit of volunteering has never left me. It simply departed one experience to fasten hopes on another. I am having to return to work because of financial reasons, so I can no longer volunteer. To put it bluntly, I’m not especially happy about this, but there are some situations that have to be met and cannot be ignored. I appreciate your candor. Thank you for sharing this experience.
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Thanks so much for writing, Mary. I’m sorry that you too have experienced uproar and damage in your volunteer work. Although I’m not a naive person, I kept thinking (and still do think) that hospice is a sacred space and shouldn’t be affected by internal politics or nastiness. Alas, such things are everywhere, I guess, and we have to learn to follow our hearts to find places that treat us with the respect we deserve. I’m sorry you’re not able to volunteer at this time, but hopefully another opportunity will come your way. All the best, Katherine
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dear Katherine, What a powerful expression of being a heart of hospice! I have known you and shared some of the hospice experiences for a long time. I have also shared your concerns. It has been costly to you to speak those concerns aloud and I am deeply sorry and outraged that it has led to your resignation. I believe you will indeed find your unique and invaluable contributions to hospice and palliative care in other ways – your resilience is an inspiration. May your heart be broken open to receive the love that is available to you from so many. Hope to see you soon. Janice
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Thank you, Janice. Yes, you know these issues well – I’d love to talk further about paths that may be open to me now. It is such a shame that people who really want to do this work are prevented from doing so.
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