Updated: Sep 13, 2020
Because I'm an End-of-life Navigator and deathcare professional I have closely followed the evolving conversations about end of life planning and death-wellness that have come on the heels (and in the heals) of the coronavirus pandemic. Thousands of people are training to be death doulas and medical practices are allowed to bill for advance directive consultations. It is actually cool to be a thanatologist! These are changes that indicate a deeper cultural shift, and if you've been following the 'death-positive' thread for any length of time you might ascertain that this growing 'industry' is seeing a moment of fame. Indeed, some death-wellness spokespeople have gained notoriety and become household names. I am guessing that Stephen Jenkinson is both gratified and wryly amused that traversing all those miles of hospital corridors, one patient room at a time, has led to bringing his message and qualities of presence to such a wide audience.
Now there is a death-wellness market, and a marketplace. And as we know, markets and their consumers can be manipulated. You may intuit, if you have read this far, that I am walking an edge here along the seam where the cloth of celebrating my profession's growth meets the warp and weft of my activism for social justice. The thread that pulls the two together is a cautionary tale.
Death consumers are being sold the idea that if we plan well and get our ducks lined up we are going to have a 'good death'. The end we want can be arranged using free online platforms like Cake, a neat and tidy 'have your's and eat it too' package. Meanwhile, sitting off in the corner of my mind's eye, Death is laughing their ass off (and yes, in my mind's eye Death is gender fluid). Because, any one who's walked this edge for a little bit learns that dying is usually both less and more than neat and tidy. Even if we do it really well, with planning and clear consciousness and flawless scripting there is likely to be a moment when the shit hits the fan. Death is inevitable and gets messy. A meditation about our end-of-life is not the same as being our own Endling. Now that consumers are being market-targeted so skillfully, I worry that a lot of people are not going to have the 'good death' they are promised and sold.
Much the way 'good birth' was marketed to white women who came to their OBGYNs clutching scripted birth plans and financing birthing centers along the way, 'good death' is being marketed to the same demographic. The folks who always get a say on how things trend are getting ready to have their say with Death too (more chuckling from the Boneyard's peanut gallery). And seriously, we are changing the options for, and quality of, end-of-life care for the better - but I hope we are all willing to share the benefits. Because the birthing statistics for women of color especially and poor women generally do not show the positive outcomes from the birth-wellness movement that benefited so many white women and their children over the course of time. And mostly the white people did not notice that we were the only ones gaining in the 'good birth' culture shift. Because comfortable white people are not good privilege sharers and cannot hear the pain of other people's labor. It is my deep hope and abiding intent that our current shift towards death-wellness is an opportunity we embrace to correct this pattern of injustice.
As a person who engages in and benefits from the death-wellness marketplace it is my responsibility to challenge the assumptions and practices which make this market grow. In my ethical universe it is wrong to sell a 'good death', promising care that our society cannot equitably deliver or letting consumers believe that the 'death-plan' package we offer means things will turn out the way we want. I mean, things may turn out the way we want, and it is more likely with a plan. But when Death calls, the most careful planning may come to nothing.
My beloved uncle believed he had planned his death carefully but was thwarted by a well-meaning home health aide who came on their day off, found him unresponsive, and dialed 911. Then everyone ignored the DNR taped to his fridge. They dragged him to the hospital to die in pain. He had prepaid his cremation expenses but I didn't find the note about which of the town's two funeral homes he engaged so his investment was lost (and we ponied up the cash) when the hospital sent him to the wrong place. Because we did not know better at the time. His careful planning had been immaculate, but Death is a trickster in traveling shoes. We do our best.
Deathcare is an intersection of community health and cultural identity, a bellwether of social wellness. When life is valued, end-of-life care and mourning are valued too. In a society where it can be too expensive to die with dignity and funeral rites are too costly to arrange, does it matter if you have a DNR on the fridge or a POLST (portable medical orders) and advance directives signed, sealed, and delivered? Since even death-wellness is now a corporatized marketplace and for-profit hospice is the norm, when that promised and imagined 'good death' does not materialize has a person failed to make a good plan? Or has the marketplace failed them with a mirage?
In 2020, death-wellness is a growth industry. Some people are going to ride the wave for their moment of fame; beware the promises you hear and invest wisely. I tell my clients we can plan for A, B, and C, but even if all goes well there are likely to be unforeseen circumstances and contingencies cobbled together on the fly. I advise my clients to plan but I cannot promise an outcome. I am committed to showing up and together we will do our best. To me, this is death-wellness. Showing up. Being aware. Doing our best. Because this is real life, not life according to our best laid plans or the latest market-guru's instruction. My confidence is ten out of ten that showing up and doing our best will bring the blessing of enough. But like most of real life, even if I can measure this it isn't marketable. I cannot teach it in a tidy webinar. There is no recipe for a good death.
Yes, the death-wellness marketplace and concurrent positive media coverage are combining in a gestalt that brings work I've been at for decades into new social relevance, educating my potential clients. Yes, it is cool to see our professions grow and evolve. Yes, it is good and even a little refreshing to make money along the way. And yes, in this moment of trending death-wellness access, practitioners (famous or otherwise) are responsible for building community health, nurturing cultural identity, and showing up in death rooms empty handed, open hearted, and able. Forget monetizing the 'good death' mirage. It isn't about the dollars, its about the sense.
Also here are a few more photos of the amazing art in the
Church of St. Michael in Bamburg, Germany