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It may seem ironic to many that only in 1996 are we beginning to acknowledge that some of the care delivered in hospitals is palliative, since the majority of deaths in the United States occur in the hospital and have occurred there for much of this century. Because medical care has become more technologically driven and is increasingly provided in the inpatient setting, it is also not surprising to find that more deaths are nosocomial. However, the quality of the care given to those dying in hospitals and the quality of the experience of death for them and their families have been criticized for decades. This is not surprising when these variables are viewed in the context of our infatuation with technology. As Dr. Joanne Lynn, director of the Center to Improve Care of the Dying, points out, in medical textbooks dealing with illnesses that are always terminal it is difficult to find references to death. What is not acknowledged can hardly be dealt with successfully.
Beginning with Dr. Elisabeth Kübler-Ross in the 1960s, critics acknowledge the denial of death by institutions of medicine — in particular, the acute care hospital — and physicians' inability, emotionally or clinically, to deal comfortably and competently with human mortality. Since then, Americans have been increasingly concerned by the deaths of family members who suffered alone during their final days and hours, treated not with comfort-providing medications and human contact but with unwanted and unwarranted technological intrusions. A number of changes occurred, but few had any effect in acute care hospitals.
One such change was the development of hospice care in the United States. Inspired by Dame Cicely Saunders's creation of the St. Christopher's Hospice in London, a movement in the United States to promote alternative ways of dying has been very successful. One mark of its success was the creation of a special Medicare benefit for hospice care, which explicitly allows beneficiaries to choose palliative care over curative services and to obtain Medicare payment for it. The hospice benefit includes the condition that the patient be predicted to survive for no more than six months, and it has been used mainly by patients dying of cancer, or more recently of AIDS, but nonetheless it has paved the way for an important alternative model of care. Beginning as an unusual form of care provided almost entirely by volunteers, hospice care has become an option in many health care plans and has in many ways become a mainstream choice for the patients given access to it.
Hospice care is the answer for only some dying patients, however. Although the limited availability of such care may be one reason why only 17 percent of dying patients are served by hospices, there are other reasons, some of which are related to the nature of hospice care itself. One reason undoubtedly is that physicians must talk to patients about the fact that they are dying far enough in advance for plans to be made to institute hospice care. This is difficult to do, and many physicians think it robs patients of hope. A second reason is the need to be relatively confident about a patient's shortened survival, and making such predictions may be easier for patients with cancer than for those with other diseases, such as end-stage cardiac disease, pulmonary failure, or Alzheimer's disease.2 Finally, hospice care has strongly emphasized and often required home care, and many hospices cannot provide care for people who do not have family members or other unpaid, supportive persons available around the clock in the home. For many people, home care is virtually impossible, either because they live alone or because their family members must work and cannot be home 24 hours a day to provide support.
Partly because the hospice movement has taken place outside the hospital setting, its success has not been accompanied by improvement in the way medical students and physicians-in-training are taught to care for dying patients. Most residents never receive any experience in hospice care, and medical students are offered at best a short elective course during their fourth year, one in which only a small minority of them participate. Because most Americans die in either hospitals (61 percent) or nursing homes (17 percent),3 improvement in the care of dying patients must take place in those settings as well as in homes. Expanded education for students in the health professions should include training at all these sites.
What else would it take to improve such care? The SUPPORT study, from which results have begun to be released, has already documented that the care of patients dying in our hospitals needs major improvement.4 In that study, half the physicians did not respect or know about patients' advance directives, the majority of do-not-resuscitate orders were not instituted until 24 hours before the patients' deaths, and most soberingly, 40 percent of patients had severe and potentially treatable pain for more than several days before they died. This study comes at a time when several activities focused on improving the quality of life of dying patients and their families and caretakers have already begun in the United States.
The front-page debate over the morality of physician-assisted suicide has stimulated some of this activity. Improvement in palliative care potentially affects many more patients than would be affected by any policy concerning physician-assisted suicide and has appropriately begun to take center stage for many people. The discussion will intensify further as we anticipate a Supreme Court decision on recent federal Appeals Court rulings that state laws forbidding assisted suicide are unconstitutional. Although physicians, nurses, and ethicists disagree, sometimes vehemently, about whether it is appropriate for a physician to assist in hastening a patient's death, all agree that the care of the dying in the United States badly needs improving, since so many patients seem to prefer suicide. What do such patients fear? They fear suffocation; they fear pain and suffering; they fear being a further burden. Perhaps if good palliative care were standard, these fears and the demand for physician-assisted death would abate.
End-of-life care should be viewed as an integral part of the continuum of care provided by the health care system. The hospice movement was a response to the need to improve the care in hospitals by getting patients out of hospitals as much as possible. It is now necessary to focus on the patients who remain in hospitals and die there. HCFA's announcement of the new diagnosis code for palliative care is an important step, but more remains to be done. The next area requiring attention is long-term care. Although the issues relating to nursing home care are similar to those relating to hospital care, the two are not identical, and they may require different solutions. For example, in some cases dying patients who receive appropriate palliative care should remain in the nursing home for their final hours instead of being transferred to a hospital. As mortality rates in nursing homes continue to rise, the nursing homes themselves can view such deaths as appropriate if they occur in the context of high-quality care.
Dignity, choice, comfort, and the involvement of family members and other loved ones are the basic principles that should govern care at the end of life. Appropriate care concentrates on quality of life in addition to quantity and is economically reasonable, centered on the patient, and supportive of the family. Clinical policies should include standards for measuring and monitoring the quality of care at the end of life, standards that are based on the continuity and type of care and on the patient's choices. Expanding the availability of palliative care must not create an assumption that all dying patients want to refuse life-prolonging measures, even though the palliation of symptoms is a goal. Clinical policies and the professional practices guided by them should be sensitive to and respectful of the wishes of the patient and the family and attentive to the control of symptoms, relief from pain and suffering, and the psychological, social, and spiritual needs of all involved.
We hope that the new diagnosis code will legitimize and encourage the use of palliative care. As with every aspect of our complex system of health care delivery, continuous monitoring is needed. Health care is undergoing sea changes, and there may be unexpected consequences, especially if the code is used incorrectly or not extensively enough. Furthermore, besides the standard DRG payments for hospitals, there are now many incentives for elderly patients to enroll in fully capitated Medicare risk contracts. In these, DRGs become less relevant, and it is important for other quality-of-care measures to be taken so that palliative resources are not withheld during this most critical time of life and particularly so that palliative care is not instituted inappropriately, merely out of concern for cost. When we change the financing of health care, we are aiming at a moving target. But there is no alternative.
The role of medicine is sometimes to cure, but always to comfort. It is ironic that the concept of comfort care has been in eclipse in this high-technology era. Nonetheless, it is never too late to provide greater comfort, especially since we have extraordinary pharmacologic and other tools with which to do so. Nothing is more gratifying than being able to relieve pain and suffering. Such gratification ought to be taught and modeled as one of the supreme satisfactions and rewards of the healing professions.
Christine K. Cassel, M.D.
Mount Sinai Medical Center
New York, NY 10029
Bruce C. Vladeck, Ph.D.
Health Care Financing Administration
Washington, DC 20201
We are indebted to the Milbank Memorial Fund for its strong support in creating the diagnosis code for palliative care; to Pat Brooks, Ann Fagan, and Amy Gruber of HCFA and Donna Pickett and Amy Blum of the National Center for Health Statistics for their important work; and to Carol Capello and Charlene Rydell, who have guided the many contributors to the Milbank Memorial Fund Working Group.
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Related Letters:
A New Diagnosis-Related Group for Palliative Care
Mahoney J. J., Cassel C. K., Vladeck B. C.
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Full Text
N Engl J Med 1997;
336:1029-1030, Apr 3, 1997.
Correspondence
This article has been cited by other articles:
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