(Image from: Social Innovation Camp)
Recently, an article from The Overtake called “The Death Trap” has been making the rounds and response has been varied. I know that it’s one that I can’t get out of my head. Mostly because of this line: “The question now is whether the emergence of mortality as a popular theme is having any practical effect: do we really know more about death and is that changing how we die?”
In other words, does talking about dying well actually lead to people dying well (whatever that means for them)?
I believe dying well requires people to understand they are going to die (and if you’re reading this, you are someone who will die), to think about what dying well means to them personally, to understand the complexities required to navigate dying well and the general messiness of death, have a community to support them, and to be able to communicate clearly about their wishes to their loved ones, doctors, and community.
Like most people who work with people either at or thinking about the end of life, the idea that talking about dying well doesn’t translate to at least a better death seems inimical. But, it’s an important question to ask. Within my “death positive” community people talk about death all the time, and work to ensure other people have “their own good deaths.” We’re not going to be objective about the subject.
Profession-related subjectivity is never more clear than when the article compares the beliefs of Hannah Merriman, a death doula, and those of Angela Halley, a palliative care doctor (both practice in the UK).
Merriman believes that the time has come for death “to come in out from the cold,” and stop being “a huge dark scary corner of the house, it’s not the attic we never go into.” The article says she is optimistic that our current trends towards openly talking about death and dying are changing the way people approach dying.
But, in Dr. Halley’s experience with the exception of “some sectors of society who are very mobilised and thoughtful about death and dying…the vast majority probably still don’t really want to discuss it unless they have to…when I bring it up in a social situations, people kind of move away and feel uncomfortable.”
So. There are small groups of people who are comfortable, or are at least willing, to accept the fact that everybody dies. But who do they talk to? Other people comfortable, or at least willing, to accept their own mortality. Unfortunately, that’s rarely their loved ones and care providers.
For example, movements like Death Cafe are fantastic. I’ve been co-facilitating the Death Cafe in my community for 4 years. BUT, many of our regulars still say the reason they come every month is because they don’t have anyone else to talk about death and dying with. This means they aren’t talking to their families, their loved ones, and certainly not their physicians- any of the people who could support them in dying well.
And, until those conversations start happening, there is no reason for our medical system to change and support people in having those conversations, let alone make the systemic changes necessary to support their wishes.
When I brought this article up on Twitter I wrote: “For me, the challenge implied is how to broaden the conversation and make people feel more empowered when talking with doctors.” I’ve worked in a major hospital and I’ve seen how even the most literate of patients and caretakers can get swallowed by a system that is designed to push one last treatment, this new drug, one more surgery- anything to forestall the “failure” of death. Patient empowerment is a part of what I offer in my community outreach work and incorporate into my work with patients and their families because it is hard to be heard.
Within medical circles, as Dr. Sarah Russell pointed out, it’s common for there to be courses for practitioners that focus on difficult conversations. Last year Dr. Danielle Ofri wrote the amazing book “What Patients Say, What Doctors Hear,” and in 2015, Dr. Angelo Volandes wrote “The Conversation” while Dr. Atul Gawande started a movement around “Being Mortal.” Dr. Jessica Zitter produced “Extremis”– a short documentary that shows the dangers of not knowing your own wishes. Conferences like the End Well Symposium (nice name!) are designed specifically so that professionals can come together and improve the experience of death and dying. Meanwhile non-medical practitioners like myself, my mentors, and my peers, work in the community- doing our best to educate people not only about their options, but how to advocate for them.
So, what’s the problem? The problem is none of us are having these conversations TOGETHER. Both the palliative care doctor and hospice director in my town are phenomenal women who make time to speak at community events about the importance of patient literacy and autonomy. Have we ever done a patient empowerment event together? Nope. (But stay tuned!)
So, does talking about death lead to better dying? Absolutely. But, to make sure you get the death you want you must be talking to everyone, not just the people who want to listen. It’s ok to make someone uncomfortable by talking about your wishes for dying well, it’s important to create space in family conversation for mortality, living well means talking to your doctor about dying well.
And for those of us who want to listen? Well, we need to make sure we’re not just listening, but talking to each other too.