Here at Berrybird, we think a lot about how Americans approach aging as a country. As more of us approach our 60s, I've been seeing a lot more articles and discussions about the challenges of getting older and sicker. One increasingly urgent issue is how we want to think about the very end of our lives.
Last year, I visited a unique place where people go to die. Enso House is an end-of-life care facility in Washington State, on remote Whidbey Island. Accessible only by ferry, the setting is serene and meditative, a landscape that encourages its viewers to turn inwards. For those who founded the facility, this is exactly the point. The facility cares for the dying, but it does so through a unique model: by hosting just one dying individual at a time. Terminally ill people spend their last days at Enso House, cared for by a team of volunteers, nurses, and a palliative care doctor. Those who apply to Enso House must sign a “Do Not Resuscitate” Form. The medical team ensures that the individual feels as little pain and discomfort as possible, but they do not undertake interventions that may prolong life but are unlikely to improve its quality, like inserting a feeding tube. Families and friends are invited to join the dying individual, and food and rooms are provided for anyone who wants to visit or stay at the facility.
The land for Enso House was donated by a wealthy student of the Buddhist teacher Shodo Harada, the head of the Sogen-ji temple in Japan. But it was Roshi Harada himself who determined that the facility would be a hospice. For him, caring for the dying was a way to confront the full journey of life. The Roshi’s philosophy is embodied in the facility’s name: An Enso is a circle made with a single pen stroke, in which the end of the stroke is simply a part of the circle, connected to the whole, as opposed to an ending. The Roshi felt that putting Zen students near the dying would deepen their urgency to learn, and monks from his temple are regularly assigned to the care team at Enso House.
Enso House is part of a growing movement in America to rethink the way in which we die. The artist Jae-Rhim Lee created a burial suit seeded with flesh-eating mushrooms to push us towards “death-acceptance” rather than embalming and other “death denial” practices of the funeral industry. Green burials, without embalming fluids or burial vaults and using biodegradable caskets or shrouds, are becoming more popular. More widely, there has been a push to rethink the American system of hospital care, which pushes invasive and expensive treatments for the terminally ill that are not delivering better outcomes in terms of either the length or quality of life. These are clearly pressing issues for us as a country: BJ Miller's TED talk about his work at Zen Hospice has more than 6 million views, and Atul Gawande's book Being Mortal has spent 70 weeks on the best seller list.
Indeed, many of those who work at Enso House seem to be refugees from this very broken system. When I visited the facility, nobody associated with Enso House received a salary. The head doctor, Dr. Ann Cutcher, had worked for many years in hospitals in Arizona before seeking out a different model, and many of the rotating staff of nurses who come to Enso House are burned out from the traditional health care system, and looking for alternatives. They come to Enso House to learn a better way.
With its enlightened approach to death, Enso House seems like the kind of place that would be attractive for people all over the world. Yet, there is no waiting list, and there are periods of time at the facility (as when I visited) when they do not host anyone at all. Part of the reason, as Dr. Cutcher told me, is that even when people want a more deliberate kind of death, they still prefer to die at their homes, surrounded by familiar people and objects. As a result, many of those who do choose to die at Enso House are from Washington State and in and around Whidbey Island.
But there are other hurdles that the movement to re-think the end of life must overcome before Do Not Resuscitate orders and fewer late-stage interventions become the norm. Even as Americans facing potentially terminal illnesses are increasingly seeing their treatments as a choice between dying at a hospital or spending their final days at home, how do you draw the line between being more thoughtful about how you die, from simply choosing to die? How does anyone facing the certainty of death choose to do less instead of more to survive? These are the kinds of choices that will face us as a society more and more in the coming years as the number of older people swells, one that we must grapple with.