That was two decades ago. The hospice movement was just picking up steam in the U.S., the AIDS epidemic was about to burst upon the national conscience. Uncounted thousands were dying every day alone, in pain, in impersonal surroundings or in the perpetual darkness of obscure nursing-home rooms. One significant voice had been raised against this over the previous decade: Elisabeth Kübler-Ross.
Kübler-Ross gave us the courage we needed. A gifted physician, writer, and speaker, she had already taken on the medical establishment for its failure to look death in the eye. She had already begun to fight for the right of dying people to speak of their own impending deaths, to talk openly with doctors and family members alike, and to embrace their own dying for what it is, part of the process of living.
Walking hesitantly into the opening session of hospice volunteer training in the mid-1980s I was still uncomfortable saying the D-word aloud. The same was true of many in end-of-life care including nurses, social workers and physicians; death was somebody's failure and they didn't want it to be theirs. As a lay person who volunteered to work with the dying, I was cut more slack than my medically-trained associates--I escaped that personal-failure complex. Still, I was embroiled in the wide-ranging emotional swings of my dying friends and patients, and their honesty could often leave me exhausted and bewildered. Many of my colleagues were similarly at sea.
Kübler-Ross gave us the understanding we needed. "On Death and Dying" was our bible of the dying process. We could see things going on with our patients that have been going on with dying people since time immemorial, and suddenly it all made more sense: the angry outbursts, the unreasonable denials, even the endless questions. We didn't know the answers, but Kübler-Ross's work helped us understand the questions.
Her example also gave us strength. It can be a raw and beautiful thing to accompany another person to the border of this life. It can also be a terrifying test, when all you have to offer is your presence - which can often seem woefully inadequate. Kübler-Ross' fierce commitment to the dignity and humanity of the dying told us we were not wrong to be at strangers' bedsides.Kübler-Ross also had a talent for raising the hackles of her foes, and they were legion. Beginning with medical professionals offended by her insistence that death will happen regardless of medical progress and skill, and later extending to professionals and lay people offended by her involvement with questionable spirit-world issues, she drew increasing numbers of opponents. She gave them plenty of ammunition.
In recent years the movement for a humane and dignified death has taken on a life of its own. Medical students take classes on dying, not just curing. Adequate pain control for the dying is increasingly seen as a human right. In Oregon, dying people may ask their physicians to help them legally hasten their own death when physical or existential suffering is unbearable. Young and old everywhere are encouraged to write their advance directives, to talk about what they would or would not want for their own final moments and days. And legions of ordinary people like me continue to work for expanded choice and improved end-of-life care for all.
Thanks, Elisabeth, for kick-starting the movement. We may not agree with your every word, but we are deeply in your debt.