Elisabeth Kübler-Ross in medical school
courtesy Ken Ross
A Revolution in Dying
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To grasp why hospice emerged and why it matters, it helps to remember how medicine evolved in the United States and some other rich countries.
Once, prior to World War II, doctors made house calls, carrying the rather meager tools of their trade in small black bags. A doctor's response to, say, a dying child was often to sit beside the bed and watch the child.
"What do you need a doctor to do that for? Well, because nobody else could do that. They can't watch their child die," says Eric Cassell, a retired New York physician and Cornell University professor who has written widely on the care of dying and suffering people. "Nobody does that now."
With the rise of modern, technological medicine in the last century, doctors no longer watched; they worked furiously to keep people alive, with heroic surgeries and life support machines. Kübler-Ross critiqued that reflex in a 1984 PBS documentary, "We have perfected the most sophisticated machines to keep bodies functioning. We never ask the permission of the patient, is that really what they want. To me that's a terrible dehumanization of the experience of dying."
"I took care of the dying ... before there were hospices," says Cassell. "And people died badly. We never gave enough pain medication. Never."
In the 1950s, Cassell recalls, hospitals avoided the most effective painkillers, such as morphine, for fear of addicting patients - never mind that the patient was going to die anyway. And most doctors never told their cancer patients they had the disease. "Because we thought if you told someone they had cancer, then that was the end because they would say, 'Well, what are you going to do?' And we would have to say, 'We don't know what to do. You know, we don't have anything to do.'"
Starting in the late 1960s, Elisabeth Kübler-Ross was the leading spokesperson for the idea that dying people needed more dignity and better care. But the real founder of the hospice movement lives in London. She's a formidable, white-haired Englishwoman most Americans have never heard of.
Next - Cicely Saunders