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Lessons of the Angel of Death

Lesson 3 - Limitations of the Hospice Solution

As I was looking at my own death and wondering about how I would die and where I would die and what I would need and what Pam would need and how it would all shake down, I became convinced that there was one thing I knew about this business of dying in America. In twenty-five years of working with dying children and their families, I had come to know that there is one group of people who are seriously pursuing this idea of caring for the dying in the United States. It is the people who have been part of the hospice movement for the past twenty-five years.

So I became convinced that for me my dying was going to take place under the care and support of a hospice and that I was going to avail myself of this wonderful mechanism of getting oneself and one's family necessary care and support. However, as I began to do make arrangements for that, I began to learn a lot about hospice in America and what's happening with hospice in America. And, I have become convinced that this hospice solution to the problem of dying in America is profoundly inadequate. It's not going to work, at least not the way we have structured it right now. What's happened? What's happened is that what began as a social movement in which volunteers and volunteer professionals played the major role in providing care for people who were dying has been transformed into an industry. When hospice was forming as a counter-cultural alternative to mainstream health care, money was the last thing that people worried about. Sure there were bake sales and car washes and other kinds of fund-raisers and solicitations aimed at keeping a little bit of money coming in the door. But there was little if any billing or concern about reimbursement for services by third-party payers.

That changed in 1983 when the United States decided that hospice had come of age and what we needed was a hospice Medicare benefit. So the leaders of the hospice movement including the fledgling National Hospice Organization sat down with the people at HICFA and designed a hospice benefit for the Medicare program. The creation of this revenue stream has radically transformed hospice from a social movement into an industry. There's actually a significant for-profit presence in hospice in the United States today. Hospice care has become part of the medical industrial complex and it has radically changed to the point that a lot of people who have been part of the movement for twenty years are disgusted with it and are getting out. And other veterans of the movement are trying hard to figure out how to reclaim something of the character of the original movement.

There are a number of problems with it. Let me mention just two. One is that the hospice benefit as it's set up right now requires that the patient be certified as terminally ill with an estimated six months to live before they can be admitted into a hospice program. There are some real serious problems with that. One is that there are some physicians, not a majority but clearly a significant minority of physicians, who never have terminally ill patients. They don't believe in it. If you're their patient, you're either sick and in need of no-holds-barred medical care or you are dead and beyond the reach of medicine. Another problem is that the revenue stream has locked hospice into a little niche and only about 15 percent of Americans who die on an annual basis are being served by hospice. That means 85 percent of us who die in America are getting nothing as we die and 15 percent of us are getting Cadillac treatment. It's a haves' and have nots' thing. The people who have homes, caretakers, health insurance and access to lots of social resources; the people who could probably do fairly well without hospice services are being served. People without these resources are not being served. It's crazy. Something has to be done.