Why families and advocacy groups accept the torture of dying patients

by Aroop Mangalik, MD

A man has lung cancer that has spread to the brain. The cancer in the brain has been growing despite full dose radiation. His lungs have failed and he has been on a respirator for 10 days with progressive worsening of lung function.

Despite multiple discussions between the doctors and the Intensive Care Unit’s team with the family, they do not accept the doctor’s advice to let the patient die in peace. There is no possibility that the patient’s cancer in the brain or his failing lungs will improve. The medical team is continuing a treatment that will not work except to keep his heart beating for a few more days and some oxygen will be provided to the body until his lungs fail completely. The doctors and I.C.U. team are providing futile treatments.

By all medical standards, they are doing something that will not work. They are allowed by law and by accepted medical standards to stop the treatments and provide comfort care to the patient. Why is it that the doctors do not stop the treatments which they know will not work, will not help the patient or the family and are stressful, even traumatic for the staff in the I.C.U.?

One big reason is that the current social environment is one of giving a lot of importance to autonomy of the patient/family. Autonomy to refuse treatments is accepted and is an improvement over the forced treatments that were common just a few decades ago.

Yielding to autonomy that leads to demands for unreasonable/futile/unworkable treatments is not the same. The assessment that the treatment will not work, in cases similar to that described above, is based on solid evidence. It is an independent assessment made by multiple professionals after due deliberation. Yet the treatment is continued only because the family asks for it to be continued.

It is worthwhile to look into and try to understand why such demands are made by families (in most cases when the patients are that seriously ill, they are not in a position to make informed decisions).

One of the statements made by the family is that the patient wanted “everything” to be done to keep them alive. This, on the face of it, goes along with the general principle of an advance directive and patient autonomy and should be respected – as far as it goes. Problems arise when there is uncritical acceptance by the medical professionals of the statement as given by the family. It is not possible to accurately interpret the phrase “try everything”. No person, even medically trained persons, can gauge the complexity of the actions that are required when body functions are severely impaired. These are step by step decisions and actions and have to be made by specialized professionals. The nuances, the changing circumstances and the body’s response are complex and dynamic. They often reach a point when the damage to the body is irreversible. Thus, “everything” has limits, limits that can only be determined by highly trained and experienced professionals. The patient’s advance directives should be respected but physiological reality must be understood and yielded to.

In the same vein, family members say that the patient was a ”fighter” and did not want to give up. This again is a generalization and often an interpretation by the family. Accepting reality is not a defeat but accepting the inevitable. A common statement is a mix of thoughts. It manifests in different ways and is a combination of hope and denial of reality. Some will say you doctors are wrong, you don’t know everything and we are hoping for improvement. Yes, doctors do not know everything and doctors have been wrong. “Certainty” has many levels. One way to look at it is to think of what we say when we part from our friends, family or co-workers. We say to our partner, as we go to work “See you in the evening” or to our co-workers as we go home “See you in the morning”. Sometimes that does not happen. But we maintain a certainty in our statements. We don’t say “See you in the morning unless I have an accident on the way home”. Yes, mistakes have been made and a rare patient may do better than predicted by the health care team. In the circumstances described in the case above (it is a real patient where I was involved in his case) there was “absolute” certainty. This was based on medical and biological facts and the assessment by multiple professionals who have seen many similar cases. Thus here there is certainty. A certainty that has to be accepted to provide the maximum comfort to the patient.

The related statement about hope is more difficult to deal with. Hope comes from multiple sources. Wishful thinking is to me a major reason for hope. The two are difficult to separate. We must be sympathetic to hope and wishful thinking, we must understand that for the family, this is reality. Often religious beliefs are added to strengthen hope and make the wishful thinking seem real and generate a feeling of certainty for the family – certainty that the patient will recover, but this should not be allowed to overshadow reality.

Societal issues also come into play. There are a variety of advocacy groups who state that patients are allowed to die, indeed some say they are “killed” by doctors, because of something in the patients’ background. The most vocal of these groups are those that advocate for the disabled. They suggest, even aggressively make the point, that doctors withhold treatments from the disabled because they are disabled. They ignore the basic fact that even the disabled get to the point when the body cannot function with or without medical intervention. The outrage expressed by these advocacy groups affects the thinking of the public at large. Race, socioeconomic status, age for example are perceived as reasons why doctors withhold treatments. This zeal distorts thinking and unrealistic expectations arise. This brings out demands for treatments that, in the considered analysis and judgement of the professionals, will not work. “Will not work” has many levels. The patient’s lung and heart and other vital functions will not be sustained except through intensive medical interventions. The primary goal of the medical team is to have a self sustaining body. If that is not feasible, then that intervention should be stopped. There are exceptions of course. If the family wants the patient “alive” until another friend or family member who is away can come to see the patient, that is different. Just to keep the heart beating by artificial means is a goal that is not acceptable to most medical professionals. The discussion and clarification of the implications of such goals is an important part of the process. Religion, faith and belief in god is another factor which some into play in these end of life situations. The way these are dealt with will vary with the “faith” of the medical team. However, it is clear that the chaplains, priests and other religious “professionals” understand death, it’s inevitability and usually advocate comfort measures in situations like the one described above. Their input to help resolve such conflicts is valuable. Death is inevitable, it is also irreversible, therefore, it brings out in many of us, a rational irrationality. We do not know how to deal with that kind of finality. For a variety of reasons our society does not know how to deal with death. Our response is to deny it, postpone it or blame it on others.

As medical professionals, we need to be kind, sympathetic and understanding. But we have to be firm and must guide the family through the goals, the reality and take them towards a rational understanding of what is happening to the patients body.

Ultimately, I feel that medical professionals, after due analysis and consensus, should have the responsibility and authority to stop the treatments they know are only prolonging the process of death, and provide a good death to patient and comfort to the family.

Aroop Mangalik is a Professor of Medicine at the University of New Mexico Cancer Center.

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