Traditions of kindness for sick and dying patients are to be found in all societies from antiquity. The beginning of the modern hospice movement is usually attributed to Dame Cicely Saunders, who founded St. Christopher's Hospice in London in 1967.9 Two years later Elizabeth Kübler-Ross published her landmark book, On Death and Dying, based on her experiences talking with dying patients in a Chicago hospital.10 Was it a coincidence that these two landmark events occurred in such close temporal proximity? I do not think so.
In 1953 the first advanced mammal, a dog named Knowsy (because he knew what was on the "other side") was successfully resuscitated.11 Further advances in resuscitation and advanced life-support led to the propagation of cardiopulmonary resuscitation (CPR) and intensive care units during the early 1960s. Early articles on CPR reflected a naïve optimism and lack of concern for the possible consequences of resuscitation. The development of CPR and advanced life-support was symbolic of much broader changes in how we understand illness and the role of medicine. The goal of medicine shifted from healing to cure, or the elimination of disease. Given early successes in curing such diseases as pneumococcal pneumonia with penicillin, people began to believe that everything could be cured - a "cult of cure" of sorts.12 The trick seemed to be to break down the human body as a machine into its constituent parts and then figure out how to keep all the parts working or, when irrevocably damaged, how to replace the broken parts. Then, if we knew and could fix all the parts in theory, our body-machines could live on forever. Great idea. Unfortunately, things did not quite work out that way. People grew old, developing aches, pains, and debilitations that the new system of medicine seemed incapable of addressing. Clinicians also become frustrated. Patients, once "fixed," did not stay fixed - they kept bouncing back to the hospital. Somewhere, there was a big mistake.
In retrospect, it seems inevitable that a backlash to such blind optimism would arise. Cicely Saunders and Kübler-Ross, as pioneers, were remarkable in having recognized the mistake far before the rest of us did. It was easiest to recognize the mistake in considering those patients who were overtly dying, yet the power of belief in the cult of cure was (and still too often is) so strong that it denied the very existence of dying patients as a class of people. Deaths, if they occurred, were aberrations; in the cult of cure people did not die, they coded. Kübler-Ross wrote that the greatest barrier to her initial request to speak with dying patients in the hospital was a broad denial that such patients even existed.10 Cicely Saunders's experiences as a nurse, social worker, and physician convinced her that dying patients were often neglected and ignored, suffering unnecessarily for want of both basic symptom management and attention. A new social institution was needed. This institution became known as hospice.
Early hospices arose as sanctuaries from traditional hospitals.4,13 The first hospices in North America were founded in 1975 in Connecticut, New York, and Montreal.14 They were all inpatient units, operating on grants and contributions. In 1979 a hospice was started in Marin, California. That same year the VA Palo Alto Health Care System started a small three-bed inpatient hospice within its newly built nursing home in Menlo Park, California, making it one of the first publicly funded hospices in the country. That hospice evolved into the VA Hospice Care Center, where I currently work. All such early hospices were inpatient facilities. Home hospice, which for many Americans has become synonymous with hospice, was a later development, spurred on in the United States by the creation of the Medicare Hospice Benefit in 1983. This benefit overtly emphasized the provision of hospice at home and more subtly discouraged the creation of dedicated inpatient hospice facilities. The net result in the United States is over 3000 hospice agencies, which provide the vast majority of their care in the home. Few dedicated inpatient hospice units currently exist in the United States. Inpatient hospices like the VA Hospice Care Center have continued within the Department of Veterans Affairs. Hospice care within the Department of Veterans Affairs has evolved independent of Medicare rules.
The Medicare Hospice Benefit did many wonderful things for dying patients. Most obviously, it provided the first funding mechanism dedicated to end-of-life care. The benefit also pushed clinicians to consider healing beyond the narrow medical paradigm. Support for family as "the unit of care" was emphasized. Bereavement follow-up was mandated as a part of the benefit package. However, the package also contained major flaws. In emphasizing care at home, the benefit seemed to ignore the obvious: the majority Americans die in institutions in either acute care or nursing homes. Paraphrasing the words of bank robber Willy Sutton, hospice did not "go where the money is," where most Americans were dying-acute care hospitals. Hospice care was also narrowly defined as applicable only to dying patients. Begging the obvious, it is not only the imminently dying who wish not to suffer during episodes of illness. A broader concept was needed that could build on the strong base established by the hospice movement to address the needs of the dying and nondying beyond home hospice, a concept that has come to be known as palliative care.
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Palliative Care Perspectives
James L. Hallenbeck, M.D.
Copyright © 2003 by Oxford University Press, Inc.
The online version of this book is used with permission of the publisher and author on web sites affiliated with the Inter-Institutional Collaborating Network on End-of-life Care (IICN), sponsored by Growth House, Inc.