Life-Sustaining Decisions & the Caregivers

Decisions about whether or not to institute life-sustaining treatments would be relatively easy if it were known in advance whether or not the patient would survive, for how long, and in what condition. But, variations in patients' physiological and psychological adjustment, and in the quality of care they receive, make highly uncertain the outcomes of any treatment for any given patient. Prognosis is especially difficult when the patient is elderly.

The inability to identify patients who will benefit from treatment arises because, contrary to popular belief, life-sustaining technologies are frequently ineffective. For acutely ill patients, aggressive treatment is associated with high death rate and serious complications. At best, one-third to one-half of all in-hospital resuscitation attempts succeed; and only one-half of the patients who are successfully resuscitated survive long enough to be discharged from the hospital. In acute episodes of respiratory failure, adults treated with mechanical ventilation have about a 50 percent change of surviving; for acute kidney failure, only 20 percent of persons over age 70 survive. Patients receiving antibiotic therapy or nutritional support have a relatively high, but not necessarily predictable, chance of survival.

Treatments whose goal is to control pain and suffering, even at the risk of hastening death, are regarded by many people as reasonable alternatives to aggressive life-sustaining medical treatment. Also there are legal and ethical uncertainties regarding when or how it may be appropriate to limit treatment. Medicare reimbursement for hospice care is currently available only in special circumstances, only to patients who have been diagnosed as "terminally ill" and then where hospice facilities and personnel are available.

Decisionmaking problems are made still more complex by the fact that, in most cases, there is not one decision to be made (e.g., whether or not to start dialysis), but rather a series of decisions (e.g., whether to hospitalize, to do a particular diagnostic test, to put the patient in ICU, to continue treatment, etc.). And separate from the question about what the decision should be are serious questions about how the decision should be reached. If, for example, the patient disagrees with medical advice, what should be done? If the patient is not decisionally capable, who shall be the surrogate if one is not named?

There is an important need for education of the public and health care providers regarding the nature and appropriate use of life-sustaining technologies.

Quantity vs. Quality of Life
Questions about life-sustaining medical care frequently resolve around judgement about what constitutes acceptable "quality of life" (and, implicitly at least, "quality of death") and deep-seated beliefs about the relevance of this consideration. Evaluations of "quality" are subjective and personal; what is an acceptable quality of life to one person may be a fate "worse than death" to another. Similarly, life-sustaining treatment that some would gladly endure, others would reject as "too burdensome" or "undignified."

Many people believe that life, whatever the quality, is sacrosanct. Under this view, the possibility of sustaining life justifies, or even dictates, the use of all potentially effective means. In contrast, many other people believe that the present and expected future quality of life are valid, even essential, considerations indecisions about whether or not to apply life-sustaining treatments. These fundamental disagreements about quality vs quantity are frequently expressed in terms of treatments that "prolong life" vs. treatments that "prolong dying."

Caregivers
Caring for critically ill, terminally ill, or severely debilitated patients who may be treated with life-sustaining technologies is demanding and highly stressful for health care providers. In addition to the emotional load of dealing with very ill patients and grieving relatives, health professionals are constantly reminded of their own mortality and their fallibility. Emotional detachment from patients, avoidance of patients' families, and overuse of technologies are not uncommon responses.

Almost no training is available now to help caregivers deal with their own feelings of loss, grief, and self-doubt. They are left on their own to develop coping strategies, which at times are detrimental to their own well-being or may affect their professional performance. Physicians' responses to patients' death may bring emotional and behavioral symptoms that can lead to such negative behaviors as minimizing contact with the patient or family, blaming others, and turning to alcohol or drugs. The ability of caregivers to resolve their personal feelings requires the kind of understanding that death education may help to provide.