On death doulas and confronting death on our own terms

I’ve been thinking a great deal about death lately, as one does. I know I talk rather a great deal about the world of alternative funerals, and departing from traditional ways of handling bodies and mourning, returning to a world and an approach where bodies are handled and honoured by the people who loved them, but that’s part of a larger framework that includes not just death, but dying. We live in a culture where we are expected to isolate ourselves from death, to wall it off and stick it in the corner because it is icky and unpleasant to think about, and that harms everyone — it harms dying people, it harms their survivors, it harms people who fear death, it harms us as a culture.

Growing up in the cultures I have, I’ve always had a slightly different approach to death. In Greece, it was natural to me to visit the dying on their deathbeds, and to have frank conversations about death — not just families but the community as a whole participated in people’s passings, especially when they were old and beloved. And as a community, we cared for them not just in death but after death, their families preparing their bodies for burial, but all of us carrying them to the graveyard, and participating in services, and mourning them. And when it came time to move remains to the ossuary, that was also something we did collectively.

It is hard to avoid death when it stares you in the face: When a trip to the graveyard comes complete with a glimpse of the ossuary, bones tumbling from their boxes, skulls grinning at you amidst headstones, widows coming to sit with their beloveds for a few hours. Death is everywhere, and that somehow makes it less frightening. It’s not an isolated unknown, but a reality. Returning to the United States and a relatively liberal part of Northern California that was also rural that was also filled with people from the counterculture that was also reeling from the HIV/AIDS epidemic, I also saw death in person. For many of our friends, dying at home was the only option, because hospitals refused to take them. They died with us in attendance because no nurses or home care assistances would come for them. We buried them because no funeral directors wanted to handle their bodies.

This culture felt normal, and right, and affirming to me — that of course we should know death, and interact with bodies, that of course we should sit with the dying, who wouldn’t fuck around with the truth. We all knew what was coming, and there was no need to sugarcoat it. Maybe we had different beliefs, different feelings about what was coming next, but we all knew it was going to happen. And people said the things that needed to be said, spoke honestly about what they were experiencing, and then, they died. Watching people die can be like watching a bathtub drain, water swirling at first in quiet eddies, creating a vortex as the pull of the drain grows stronger, and suddenly, snap, with a slurp, it’s gone, and all that’s left is a thin sheen, body still warm, but lifeless. Sometimes it is harsh and violent. Sometimes it is painful and sharp. But it always ends. Dead people do not look asleep. They look dead.

I have since learned that this is not the way other people live.

When I first heard about death doulas, I was intrigued, that people would need attendants facing death because the people around them find this awkward and clunky and uncomfortable, not really knowing how to deal with it. It made me a little uncomfortable, to be honest, to think that people would be so isolated and alone that they would need strangers to sit with them in the hours of their death, but my view on that has since shifted. Some people truly are alone, with no one available for them. Others have friends and family who are unable or afraid to attend them — should I look down on them for needing the voice and presence of a stranger when otherwise they would be meeting death alone?

Some doulas are nurses or other trained health professionals, while others are just people who feel passionately that the way we are dying is broken, and we need to fix it. They interact with people on their own terms, and help those people decide how they want to interact with death, how deep they want to go, how they want to communicate with the people around them. Maybe that’s counseling them and helping them advocate for themselves in a culture where refusing treatment, or wanting to control the degree of treatment people receive, is considered taboo — we are supposed to cling to life, to refuse death, rather than saying that we are done, and would like to go now.

For people who fear death, a doula can change the way they relate to it, can guide them not just through the mechanics of what to expect and how to deal with it, but the more psychological elements of fear and culture. While they are there for the dying, they are also there for the living who surround the dying, for the conversations about deep, dark things that frighten people because they are left in the darkness rather than being presented neutrally in the light for everyone to see.

Death doulas, unfortunately, are often available only to those who know about them, can afford them, or are referred to them by hospitals. The same holds true for birth doulas in many environments, despite the fact that using a doula actually improves birth outcomes and empowers patients. Similarly, death doulas improve the quality of dying — if such a thing does not sound strange — and should be available to everyone, regardless of how and when and where they want to die. I want to find a world where that’s possible, because everyone deserves the option of going into death in the company of someone who knows death, and does not fear it.

Image: Death, David Pettersson, Flickr