The Care of Dying Patients

In our world of increasingly sophisticated medical technology, there is growing concern that the care of persons facing death is wanting and that many patients are dying in physical and mental anguish. This deficiency in care at the end of life is highlighted in the recent report from SUPPORT (the Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments) [1], one phase of which is described in this issue [2]. This study was a 5-year project designed to identify and correct problems in the care of patients approaching death. The project was done at five hospitals across the United States and was funded by the Robert Wood Johnson Foundation in the amount of $28 million.

Despite intense effort and dedicated input from many professionals, the results of SUPPORT have been disappointing. Proposed interventions have had no clear effect on improving patient–physician communication, facilitating the documentation of appropriate do-not-resuscitate orders, decreasing the number of days spent in intensive care units, relieving pain, or reducing the use of hospital resources. As Lynn and associates report [2], family members of patients in SUPPORT and HELP (the Hospitalized Elderly Longitudinal Project) have confirmed that dying patients are often left with a great deal of pain, anxiety, and dysphoria.

Why, despite our honest efforts, are we doing such an inadequate job with end-of-life care? Why did SUPPORT fail even to begin to alleviate the problems it set out to address? What are the implications of the public's perception that care is frequently impersonal and mechanical? And, finally, what can be done about this perception?

We must look beyond conventional explanations. There is no doubt that many physicians lack good communication skills, do not explain situations well, are trained to see death as failure, and may be too aggressive in treating dying patients. It is equally true that patients and families often have unrealistic expectations and false hopes. But the problems go deeper than that. There is a wide gap between what the public believes technology is capable of doing and what technology actually accomplishes. Only when serious illness strikes do families begin to realize that physicians can often do little to change outcomes. It is certainly not well appreciated that large gaps in medical knowledge remain and that many diseases elude treatment. For patients and families who have so little knowledge of our failings, the truth comes as a shock. For example, no one has publicized the dismal statistics about recovery from cardiopulmonary resuscitation in elderly patients; the results are far different from what is seen on television [3].

Many patients and families are ambivalent about what to do when serious illness strikes and death becomes a real possibility. Despite the Patient Self Determination Act of 1990 and campaigns to encourage written advance directives, only about 15% of persons in the United States have executed such documents. Patients are confused about having to make life and death decisions far in advance. How can one be sure about how much pain one would tolerate to see a grandchild's wedding or to spend a few more days or weeks with a loved one? This ambivalence also extends to the hospice movement. Hospice offers humane care with an emphasis on the relief of both physical and mental pain. But only a small percentage of patients avail themselves of this opportunity, perhaps because entering hospice means accepting death and “defeat.”

Faced with overwhelmingly complex technology, patients in the United States fear loss of autonomy. They may wish to be saved by technology, but they fear that it will cause them to lose control over their lives and experience a lonely and impersonal death. Fear of losing control has led to increasing interest in the “right-to-die” movement. Physician-assisted suicide, the legalization of euthanasia, medical futility, and the activities of Dr. Jack Kevorkian are discussed and debated throughout the United States. The growing interest in alternative medicine is at least partly due to a deep distrust of medical science.

Where will all of this lead? What can we do to resolve the justified concerns of our patients? We cannot turn the clock back like modern-day Luddites. Technology will not disappear. On the contrary, it is more likely to become more sophisticated and make these problems even more difficult to solve.

Because more than 50% of Americans die in hospitals [4], it has been suggested that special hospital units be established to separate dying persons from other hospitalized patients [5]. Trained nurses and physicians could provide humane and dignified care in such settings. However, although the proposal seems to make sense, it raises the specter of transferring seriously ill patients to the back room-the dying room-of the ward, as was done years ago.

Another option is to keep the dying patient out of the high-technology milieu of the hospital. Most patients do not stay home when death is approaching, even though they may initially have intended to do so. Whether because of the panic of family members or because of an inability to face the finality of death, most patients find themselves in a hospital at the end. However, other, more appropriate facilities, including extended care centers, nursing homes, and hospice, provide end-of-life care. Personal observations in a geriatric long-term care facility have suggested that dying in such a setting may be much more in keeping with the desires of patients and their families.

Significant change in the way we approach end-of-life care will require at least two difficult adjustments. First, we must change our cultural attitudes and accept death as a natural phenomenon. This will not be easy to do and will not happen quickly. The current debate over the right to die may help to focus society's viewpoints in this regard. Second, despite the apparent failure of SUPPORT, our health care institutions must commit more resources to improving end-of-life care. Hospitals will continue to have little interest in altering their approach to the dying patient unless public pressure for change increases.

Our society has not yet accepted the inevitability of death. We are impressed by the steady extension of life expectancy, but we forget that we have not extended, and probably cannot extend, our lifespan much beyond 100 years. How we deal with the final years of life does much to define the kind of society we have. We must provide our patients with a peaceful and dignified death, without pain and with as little anguish and anxiety as possible. We may finally consider SUPPORT (a valiant attempt to correct a serious shortcoming) a success if it is the beginning-and not the end-of our commitment.

• Copyright ©2004 by the American College of Physicians