Dr. English, a general surgeon who recently studied theology and ethics at Union Theological Seminary in Virginia, resides in Washington, D.C.
This article appeared in the Christian Century, May 14, 1986, p. 489. Copyright by the Christian Century Foundation and used by permission. Current articles and subscription information can be found at www.christiancentury.org. This material was prepared for Religion Online by Ted & Winnie Brock.
Unless changes in physicians’ attitudes and behavior are modified, most of us will experience death in a hospital or a nursing home. We can only pray that our last words will not be: "Why hast thou forsaken me?"
A 75-year-old woman was admitted to the hospital for treatment of a malignancy that had spread throughout her body. "Dismal prognosis" was noted on the chart. Many laboratory tests were performed and chemotherapy -- requiring intravenous punctures -- was resumed, even though studies had shown that this type of cancer does not respond significantly, if at all, to drug treatment, and even though complications and side effects from the drugs were expected. The day before she died, a large, painful tube was inserted between her ribs to remove chest-cavity fluid.
A young woman entered the hospital who was known to be dying of a rare, malignant tumor of the liver. At the time of this last hospitalization, she was deeply jaundiced. Most of her liver had already been destroyed by the tumor cells. Nevertheless, on the day before she died she was aggressively treated for a particular complication of her illness that required blood to be drawn from her frequently. Her blood pressure, pulse and temperature were also continually monitored.
In these real cases, were the attending physicians being faithful to their calling, even to the classical minimum medical ethic of "Do no harm"? Were the considerable resources of the intensive care unit (ICU) being put to the best use in these instances?
The ICU has helped in the healing of unknown numbers of people with severe injuries and acute illnesses. In some cases, life has been wrenched from death. For others, the ICU has provided attention and care not available elsewhere in the hospital. But for another group of patients, the ICU has simply become a place to die. The technology of the ICU can neither prevent their deaths nor even significantly delay them. For these unfortunates, the ICU only serves to turn their final days and hours into a virtual crucifixion.
Crucifixion, we know, was a torture reserved, in the time of Christ, for slaves and despised malefactors. Along with physical suffering, crucifixion meant isolation, restraint, nakedness, sedation (offered, at least) and piercing of the body. The sensory suffering of the victim can hardly be imagined, much less the psychological and spiritual agony.
Yet some of those same sensations are experienced by some patients in hospitals today, especially in intensive care units. For example, the ICU is an isolated place, where the patient is under the tight control of the medical staff. Visitors, even intimates, are strictly limited.
Because of the nature of the many mechanical devices that are part of the ICU, many patients have one or more of their limbs restrained. Improvements in the systems of restraint have been made to minimize pressure on the body and to accommodate normal body positions, but confinement is still required.
Like Jesus, the patients have their own garments taken away. A hospital gown lacks the comfort of familiar clothing, and frequent exposure of the body for examination provokes a sense of nakedness. If the patient is aware enough to care, the shame of nakedness is added to other assaults. "To be naked means, of course, to be defenseless, unguarded, exposed -- a sign of our vulnerability before the elements and the beasts" (Leon R. Kass, "Thinking About the Body," The Hastings Center Report [February, 1985], p. 27).
It is axiomatic that ICU patients receive drugs, which may not be limited to the sedatives or narcotics appropriate for alleviating restlessness or pain. Over-medication occurs regularly in hospitals, a tendency that scarcely diminishes in the ICU. Countless relatives have complained about the effects of excessive sedation on their loved ones.
For the seriously ill, repeated blood drawings and penetration of veins to administer fluids are routine. It should not be thought that patients become less sensitive to these punctures of the skin; only lowered consciousness relieves the sensation. Other invasive procedures can take place: bone-marrow aspirations, the insertion of various catheters into the circulatory system, the placement of large, plastic breathing tubes into the windpipe and so on. The most extreme example of such a technological invasion is the implanting of an artificial heart.
The ICU patient may also suffer from ICU syndrome or psychosis. This is a condition of confusion and disorientation, sometimes hallucination, that occurs, especially in older patients, because of sleep deprivation, drugs, stress and the experience of being in strange surroundings. Most of us deeply fear such an experience: losing control of one’s faculties suggests the beginning of death.
What types of illness are being futilely treated with this level of technical intervention? Any illness for which there is no effective treatment to control or reverse the pathologic process, or which no longer responds to aggressive measures. This is not to suggest that physicians should be quicker to predict death. Most of us who have ventured to answer the question, "How long, doctor?" have been proved wrong. Rather, the need is for a sensitive, honest and reasonable approach to deciding when to commit someone to the environment and the ministrations of intensive care.
The basic question to be raised concerns the experience of dying itself. Is there not a desired quality of dying? Is there a good death, or at least a less-than-bad death? If so, is that not a reasonable hope for everyone? And would not that better dying include, whenever possible, companionship and presence, freedom of movement, personal clothing and familiar surroundings, clear-headedness and absence of externally caused pain?
Ideally, questions of this sort should be resolved by the patient before the need to enter an ICU arises. It is still incompletely understood, by both professionals and the public, that the ethical and legal authority for deciding on treatment belongs to the patient, not to the family or physician. Although it too rarely happens, the patient can communicate his or her wishes on this score to the doctor, if there is a good patient-physician relationship. Also, the use of living wills, though imperfect, can provide a way of anticipating medical decisions. If these direct methods are not used, hospital bureaucracies and medical workers can obtain information at the time of admittance about the patient’s values and attitudes regarding levels of treatment and intervention. Informed consent is neither simple nor easily defined, but the need remains for those who are healers to be increasingly responsive to patients’ wishes.
Of course, some patients may avoid this dilemma by remaining outside a medically dominated institution, or by seeking a setting, such as a hospice, where medical authority is secondary. However, wealth and status don’t necessarily confer autonomy in this regard. Eleanor Roosevelt, for example, expected her physician to save her from a "draggedout, agonizing death. But Dr. -- was unable to comply with her wishes. And when the time came, his duty as a doctor prevented him" (Joseph P. Lash, Eleanor: The Years Alone [Signet, 1972], p. 324).
Once in the hospital environment, patients and their families, even strongly independent ones, frequently become passive. Illness, especially when severe, is very frightening, and it is automatic in such a situation to depend on a believed-in system or professional healers.
Contributing to the patients’ willingness to let physicians control treatment is the tendency of doctors to be overly optimistic in estimating the effectiveness of therapy. Physicians themselves may be unaware that they are offering far more hope than can be statistically defended. For instance, most common adult solid tumors that are not cured by surgical removal are resistant to chemotherapy or radiation control, yet drug therapy is frequently offered as a "possibly effective" treatment because both patient and physician want to believe it so. (Doctors frequently reply to criticism of this kind by saying that "hope" must be given to patients regardless of prognosis.)
Further complicating the problem is the fact that many physicians think that they do know what is the "good of the patient" and that they are empowered to act on that knowledge. This attitude represents a failure to distinguish between the personal, value-oriented aspects of illness decisions and the professional, technical ones. The former truly belong to the patient and include such questions as:
Should I go to the hospital? Should I accept drug treatment or an operation? Should I seek another opinion? Should I leave the hospital? Examples of issues that belong to the professional are: What examination is required? What tests are appropriate? What therapies can be offered? Physicians have often blurred this distinction to ensure that all the decisions are ours. And even with cautious or skeptical patients, our powers of persuasion are rarely unsuccessful.
Most serious of all is the fact that communication between doctor and patient is consistently short of what it might be. A study of cardiopulmonary resuscitation (CPR) at a well-respected Boston hospital revealed that physicians rarely discussed CPR with their patients, despite the fact that one-third of patients who die in the hospital first undergo CPR. Disturbingly, "the physician’s opinion about a patient’s desire for resuscitation correlated only weakly with the preference expressed by the patient" (Susanna E. Bedell and Thomas L. Delbanco, "Choices About Cardiopulmonary Resuscitation in the Hospital: When Do Physicians Talk with Patients?" New England Journal of Medicine, vol. 310 [April 26, 1984], pp. 1089-1093)
It is clear, then, that changes in physicians’ attitudes and behavior are required. Also, hospitals need to be restructured to provide appropriate levels of care. Awareness of these needs is increasing, but more education is necessary.
Clergy have a special role to play in mediating between the patient and the medical establishment. First of all, they can help people think ahead about how they would wish to be treated should they experience an intensive-care situation. Second, they can serve as patient advocates in the institutional setting. And third, they can help those physicians who are parish members to be more sensitive to the plight of the terminally ill. Clergy have unique opportunities to minister in these areas. Though agents of the medical model of illness may be reluctant collaborators with ministers, relationships between the professionals must become collegial and cooperative, not combative, if patients are to be served well by both.
For many cultural and sociological reasons, it may not be possible to reestablish home-care for the dying. A fortunate few may be granted a private death amid familiar surroundings, close to chosen intimates, and supported by holistic health personnel, of which clergy are significant members. But most of us will experience death in a hospital or a nursing home. We can only pray that our last words will not be: "Why hast thou forsaken me?"