The Beginning of The End?

What the limitations of corporate hospice tell us about the future of community deathcare

This is something I’ll never get used to as a hospice volunteer — going to check on a patient and walking into an empty room.

Communication is everything. It’s the means by which we express ourselves, ask for what we need, share our stories, tell each other what feels good, where it hurts.

Communication is how I came to know M. It’s how I learned she once had a garden filled with gladiolas. It’s how I understood that she wanted a pink straw shoved through the aluminum tab on every can of Coke I held for her.

M died this afternoon in hospice, but I didn’t know. I hope she had all of her people around her, but I’ll never know. I love hospice in theory but in practice, something is missing. Large, corporate, for-profit healthcare institutions are no longer serving us properly. Patients, families, doctors, nurses, therapists, volunteers: we’ve become pawns in a rigged game. It’s time for change. We need to reclaim end-of-life care.

One of the reasons I became a Death Doula is because I believe we can do better. I believe we can work to ensure that no one dies alone. I believe we can create conditions that are free from avoidable distress and suffering. I believe the best death is one that takes place surrounded by the loving support of others, not at the end of expensive, unnecessary medical interventions. I believe we inherently know how to transition peacefully (wherever it is we’re headed) but fear gets in the way. I believe our culture perpetuates that fear. I believe we can care for our dying at home, say goodbye over the course of many days, and then grab a shovel and dig the grave and bury our dead in the places they have chosen for themselves.

These ideas are not new. In fact, they’re very old. With communication, I believe we can get back to where we need to be. To a place where we care for ourselves and each other because we know and trust that we have the skills to do it more patiently and tenderly than any institution can. Back to a place where we value the dying process as much as we value being alive.

M was a fiercely independent woman. She worked hard, raised her kids, took care of her home and her beautiful gardens. She had a long life that I only witnessed for a few months, but I learned a lot from her. She knew what she wanted — out of life and death. She talked openly about her plans and had a habit of bossing me around when something started to go off course. I didn’t mind a bit. We should all be so sure of ourselves on our deathbeds.

M was fiercely independent, until she wasn’t. If she could’ve ordered someone to call me this afternoon, she would have. If she could’ve lifted her phone (the one that hadn’t been touched in weeks) and texted me (with fingers that hadn’t moved in days) she would have. She would’ve told me to get over there for one last goodbye. But she couldn’t and so our last goodbye was yesterday, when she was still in this bed.

Communication is everything. It’s the reason I’ll be okay with this ending because the two of us communicated well. We talked and listened and said deep, authentic goodbyes every time I left. We never knew if it was the last time and so we acted is though it was.

Communication is everything. It’s the reason I’ll keep blasting my death trumpet every day, blabbing about green burials and living funerals and asking all my friends if they’ve completed their advance directives. Communication is the key to change. I believe as a community we have what it takes to change the face of death and dying and I’m not going to stop until we’re there. I hope you’ll join me.