When I worked briefly as a Buddhist chaplain in a Medical ICU I was shocked by the suffering I watched every day as families anguished over what to do next. There are no words to adequately describe an ICU death. It is most often preceded by medical interventions that are barbaric – machines, wires, drugs, and pumps sustain a body until bereft family members can find a way to stop the aggressive medical treatment and let nature take its course, often feeling like they are committing a crime rather than releasing someone from prison. The ICU is no place for siblings or children to have conversations about what a parent or loved one would have wanted at this point. It’s like trying to teach a drowning man to swim. The die is cast.
What if families talked about end of life care over dinner? What if priests and rabbis and pastors fostered values-based “upstream” conversations not just about how we want to live but how we want to die, knowing they are intimately connected? What if it was not taboo to talk about the kind of treatment you want – or don’t want – before you die? How can we help families, neighbors, faith communities and clinicians to stop being fearful, maybe stop wasting time watching television or shopping and turn attention to the most important event that we will all inevitably face?
The pain I saw on the MICU was not just physical but the most excruciating emotional suffering I have ever witnessed. And yet, that rare family that truly knew and understood the patient could firmly direct clinicians toward the end of life their loved one envisioned. Most people (about 80%) want to die at home, yet 70% die in institutions. Where is the disconnect? Why does this happen? Not surprisingly, nearly 88% of physicians say they would not want the aggressive end-of-life care their patients endure. How can we bring our culture back from the brink of often brutal over-treatment to the death most people want – a mostly pain-free natural ending at home with loved ones?
With the force of weapons of war, physicians and medical machinery can easily overwhelm patients and families. But we can reclaim the power we have given over to the sainted notion of longevity. We can, in fact, be encouraged and taught to talk to each other about what we want our dying to look like. The Conversation Project, for instance, is a grassroots vehicle for helping communities have these difficult, yet oddly sometimes joyful, conversations about life and death. Neighborhoods band together to keep their streets safe; they can be powerful change agents on the block. What if we had devoted champions embedded in neighborhoods and churches? We can help to gently guide people and their loved ones to “take back the night.”
I remember one amazing black family that sang their mother into her life’s exit. It is possible to “take back the night” and, in fact, find our way to go gently into it. Fifty percent of us will be unable to make decisions about end-of-life treatment. So now, while we can, we just need to open our hearts and start talking to those who will. I want to spare my three boys the anguish inflicted on families by fear and aggression. I’d like them to sing me out of this life, untethered to machines or specialists, their loving arms catching me as I fall.