Jana Buhlmann: Why I’m speaking out about hospice care and assisted dying

In this post for the Dying With Dignity Canada blog, Jana Buhlmann, who supported her husband on his assisted dying journey last year, writes a thoughtful reflection on hospices that refuse to offer medical assistance in dying (MAID). She also contemplates how she and others might use their voices to effect change.

I attended my first meeting of the Dying With Dignity Canada (DWDC) Vancouver volunteer team a few months ago. As the wife of an assisted dying recipient, I was floored by this group of people. For some reason I thought they would all have a personal story related to medical assistance in dying, but how could they? It is still so new. Instead, they have a kindness and a commitment to being there for others. And I am sure underneath this commitment, they have personal stories about death — stories that keep them coming back to the table. And the bedside.

I thought that I would become a volunteer too, but I see that my role will be different. I am not entirely sure yet what it is that I will give based on my experience with MAID, but I trust that time will show me. I can feel that meeting this amazing group of people will help me find my way.

Jana and her husband, Chris, who accessed MAID last September. (Screenshot courtesy of CTV)

I was also blessed to hear DWDC’s CEO Shanaaz Gokool speak — freely, fluidly, and with passion — for at least a half an hour. She left me wanting to learn more, to find my place in this change. She spoke of the unique place the MAID dialogue holds not just in Canada, but in the world. Universal health care and a Charter of Rights and Freedoms set a tone in Canada that allows for a dialogue and a change not occurring in any other country with rights to die.

Apart from wanting to raise my voice about how supporting a medically assisted death has changed me personally, I can also feel the fire I am stoking around knocking down barriers to access. In particular, I am trying to understand the perspective of hospices who want to deny MAID to their residents.

When I wanted to understand chemotherapy further, I turned to my science friends. “Palliative” meant comfort, they told me. So palliative chemo was meant to keep someone comfortable, not remove the cancer from their body. I then extended this definition to palliative care itself — comfort — and it was certainly what I observed in the team that cared for my husband. And so I assumed that had we needed hospice care, it too would have offered comfort. For my husband, the ultimate comfort came with an assisted death.

Creating new definitions

So now that hospices very close to my home — this home in which my husband found his last physical comfort — are raising loud voices against MAID in their spaces, I want to understand. In one hand, I hold the definition of “palliative” that has been active for me, as mentioned above. In the other, I have picked up the international definition of “hospice care,” which is not hastening or prolonging death.

To me, language is a living thing. It should not bind us; we change it to reflect our living. And dying. So perhaps it is time to change some definitions.

Through my writing, I want to contribute to an awakening in our discussion of death. Dying, or so I believe, should be a part of living. As I write, I think a lot about fear. I think about my own fear, so that I might offer it up to lessen the fear of others. How do we open doors? And how do we help those actively holding this definition of “hospice” — not hastening or prolonging death — to release fear and to grow understanding?

Jana and Chris (Photo credit: Ellie Ericson Photography)

The palliative nurses that attended my husband’s MAID chose to be there. They were supported in this choice, and in how they processed its impact afterward. There is room for choice in the provision of support, just as much as there is now choice in death itself.

It strikes me that a medically assisted death does actually fall under the international definition of “hospice,” as it aids those who do not want their death prolonged, even naturally. And beyond looking for data to make my case, I return to the word “comfort.”

My offering to this discussion — and I will say it to hospice boards and staff as often as they will listen to me — is that a medically assisted death is comfort, for those who choose it. If hospice care is about empowerment and dignity, I would think there is no more ideal a place for MAID.

How do we make comfortable those who offer comfort? I am quite certain there is no international definition in this regard. For this, I hold space. And I raise my voice.

Jana Buhlmann lives in New Westminster, British Columbia, a city her husband loved and which comforts her with its sense of community. You can read her personal blog, Bring the Joy, here.