Photo by Long Lim/Flickr, cc by-nc-sa 2.0
It's difficult to believe these days, when so many of us have had some experience of moving toward death with a loved one in hospice, or even a stranger on the CaringBridge website, how "badly" people died in this country until very recently. That's the word Dr. Ira Byock uses. He began his life in emergency and family medicine and recalls that when people were deemed to be dying — when what was wrong with them was beyond "fixing" — they too often died in pain in the hospital or were simply sent home. Doctors practicing now still recall their training, implicit and explicit, that death was a failure of the body, and of medicine. We turned away from it, scientifically and culturally.
The palliative care and hospice movement arose first in England and then took hold in the U.S. in the 1970s and 80s to compassionately treat the pain of chronic illness and all the suffering — physical and otherwise — as the end of life approaches. Its spread has converged with the continued advance of medicine. In our lifetimes, many forms of cancer have transformed from fatal diagnoses to chronic illnesses.
As I was preparing for my interview with Dr. Byock, I re-read a gripping New Yorker article by the surgeon Atul Gawande. It chronicles the increasingly blurring boundaries between treating illness, prolonging life, and staving off death. When one woman asks him if her sister is dying, he realizes, "I wasn't even sure what the word ‘dying' meant anymore."
Dr. Byock sees this as a human opportunity and challenge. Medicine is remarkable, he knows from the inside, and will continue to get more remarkable with the passage of time. But we must "grow the rest of the way up" and acknowledge that we have yet to make one person immortal. Even while we fight for life with all the tools at our disposal, we have to reckon with the reality of death. The good news, as he tells it, is that there are riches to be gained in that reckoning. That edge of life — which our miraculous medicine allows some to perch on longer than ever before — can be a time of unparalleled repair and celebration. Like it or not, as Dr. Byock says, death completes us. These days more than ever before, we can shape that moment of completion together with those we love.
With this kind of thinking, Dr. Byock is taking the impulse behind hospice to a new place. He goes so far as to suggest that dying can be a developmental stage of human learning and actualization — like adolescence or mid-life accomplishment. He names "the four things that matter most" — words that can be transformatively spoken and enacted — at the end of life: Please forgive me. I forgive you. Thank you. I love you. These are four sentences, a mere eleven words, with a power to call up a lifetime of struggle in so many of our families.
I think here of that phrase attributed to Oliver Wendell Holmes that has recurred so often in my interviews: the "simplicity that lies on the other side of complexity." For in the time of life we call dying, as Dr. Byock describes, these elemental human capacities like thanks, love, and forgiveness can unfold in their most complex and immediately redemptive power. I love this quote of the theologian Paul Tillich, which he put in the preface of his book The Four Things That Matter Most, and which points at the way being with dying has opened Dr. Byock's imagination about the word "forgiveness":
"Forgiving presupposes remembering. And it creates a forgetting not in the natural way we forget yesterday's weather; but in the way of the great "in spite of" that says: I forget although I remember: Without this kind of forgetting no human relationship can endure healthily."
One difficulty of this conversation is that there are no rules for when, in any life or any course of medical treatment, we can know we have crossed the boundary between fighting death and facing it. Dr. Byock suggests that this is not an either/or but a both/and. Still, there is something fierce and sacred in us that resists the end of our life and the death of those we love. That same impulse resists the kind of contemplation that happens in this conversation as well. One of Dr. Byock's most basic insights may be his most helpful: we must remember that, even in the 21st century, death is never really a medical event but a human and personal event. Dying is a defining feature, strange and mysterious as it remains, of living.