Death with Dignity Withdrawal of Life Support.

Through the cobwebs of childhood memory, I can still remember the strange smell that hit my nostrils when I opened the front door of my home in Poland, curious to see whether the new day had brought any change to my grandmother's state of health. Earlier full of wit and life, she was now fading away with renal failure and other complications, as well as a consciousness swollen with hatred toward her quality of life and guilt that she was a burden to us. As I entered the dining room, the scent got stronger and the image of my grandmother spread comfortably on the couch struck me with a realization of what had happened.

Despite my views now, the first impulse of my eight-year-old self, other than opening all windows, was to dial the Polish equivalent of 911 and Mom's work number. This should have been the end to my grandmother's suffering but, despite her comatose state and my mother's pleas to take her off life-support, she awakened again, after three weeks in a coma, only to face another six long months of unbearable suffering. Why did the physicians insist on keeping her on life-support despite their knowledge of her well-thought-out opinions, this obvious "quitting" attempt, and the requests of my mother (who was her health care proxy) to end her suffering? I cannot vouch for the personal philosophy of the physicians who took care of Grandma. Nor can I bear witness to their training and ethical framework. Nonetheless, I would like to explore the issue of the withdrawal of life-support as it stands now, after sixteen years of heated debate.

With the advancement of humankind via medicine and technology that combat the natural course of action come the ethical dilemmas intrinsic to anything that is not of supernatural origin. These are especially evident in the arena of terminally ill patients or those who wish to die. The request for withdrawal of life-sustaining treatment put forth by the family, as in Grandma's case, burdens physicians with fear that they would be committing an illegal act of physician-assisted suicide by doing so. Physicians may be concerned about the violation of the principles of beneficence and nonmaleficence sworn to in the Hippocratic oath, as well as the damage to the integrity of medicine as a healing art that might ensue from such an act. In my opinion, in addition to these concerns, the more modern ethical issues at stake here could be the principle of patient autonomy and the idea of the quality of life as chosen and perceived by the patient--both key components in the patient-physician relationship.

In view of my medical training and current personal opinion, had I been on an ethical committee (granting there ever was one) advising the physician on this issue, I would--respecting my grandmother's autonomy as expressed by the substituted judgment of her surrogate agent and consistent with the principle of nonmaleficence--recommend that her life-support be disconnected and she be allowed to die in her own house, according to her wishes and life values. Not doing so would be a violation of her autonomy and would, as it had done, subject her to long months of pain and suffering that would breach the principles of nonmaleficence. The course of action the physicians chose to take was quite alienated from the wishes my grandmother had expressed throughout her years of treatment.

It must be said, however, that sixteen years ago, in a paternalistic communist country that Poland was, the doctor-patient relationship had a very different premise: one of authoritarian physician and submissive patient. To add to that, the strength and prevalence of the Roman Catholic church was the driving factor for many of the medical decisions made at that time and does not so strongly apply to the current situation in the United States.

The rationale behind foregoing life-sustaining treatment as not an act of killing is a multifaceted one. First of all, it needs to be stressed that the causative agent for the fatality is the disease already present. Technology is controversial in that it equips us to prevent the natural course of action in terms of disease, yet in many cases it has the negative effect of delaying the inevitable death and prolonging suffering. It is indeed true that physician-assisted suicide is currently illegal in order to prevent a slippery-slope situation. However, as established by courts, the removal of life-sustaining treatment is not legally considered an act of physician-assisted suicide. In addition, as it has been shown in the case of Dr. Timothy Quill, in some cases sufficient moral reasons exist to justify physician-assisted suicide.

The deliberation about "killing versus letting die" has an additional interesting twist in the comparison of the evil of taking human life to the perception of what this life means to the individual and how that affects the degree of this misdeed. The general attitude about taking a life is that it causes the loss of one's capacity to plan and choose a future and deprives one of life's goods and joys. One reason why many physicians object to the withdrawal of life-sustaining treatment is that they see it as an active action of this evil--an action that might not be in agreement with their medical integrity or religious beliefs. As I mentioned above, the fact that my grandmother's physicians were Catholic most likely had some bearing on their decision. Nevertheless, we need not forget that she had suffered increasingly from her disease and advancing age and had decided there was not much left to live for. It is an autonomous perception that she had upheld for a long time and as a competent adult had a right to make. This sort of decision should be sacred to a physician, regardless of how it may interfere with the Hippocratic oath.

Naturally, some would argue against such a decision based on the view of the sanctity of life: that is, everyone, not only physicians, has an essential task to preserve life; therefore ending life is not justifiable under any circumstances. The problem with using the sanctity of life as an argument is that, as it turns out, it is not always an absolute. There are instances when taking a life, especially one's own (in defense of certain beliefs or as a sacrifice for loved ones), is accepted even by the strongest believers in the concept. Is life of infinite value then? It would appear that life itself doesn't present any value; rather, it serves as a vehicle for realizing other values--the basic gear in the human quest for fulfilling goals and desires.

One would have to agree then that, in my grandmother's case, as evidenced by her suicide attempt, life no longer held major values and no longer served as a vehicle for realizing those values. Consequently, even though I agree that the sanctity of life view is an important concept to prevent the slippery-slope phenomenon, it is my belief that the autonomy, value of life, and suffering of patients have to be considered and regarded on an individual basis.

The remaining issue is the perceived legal implications of withdrawing life-sustaining medical treatment. Although many believe it to be an action of physician-assisted suicide, in reality withdrawing life-support has been affirmed in court many times (Quinlan, Herbert, Linares, and the like). If certain conditions are fulfilled, it is a procedure in which the physician (or health care proxy) is acting within the limits of the law. The conditions required are the following:

* It is virtually certain that further medical intervention will not attain any of the goals of medicine other than sustaining organic life.

* The preferences of the patient are not known and cannot be expressed.

* The quality of life clearly falls below minimal.

* Family and members of the staff are in accord.

The first condition was fulfilled in my grandmother's case, for the physicians gave no hope of her recovery. Additionally, based on the 1984 California Appellate Court ruling in Bartling v. Superior Court, I would argue that this condition is not necessary to make the refusal of treatment honored within the legal limit. As shown in Bartling the ethicists and courts primarily consider the patient's autonomous choice or, if that's not available, the substituted judgment of the health care proxy or family.

The second condition--the issue of capacity--is often an object of controversy, as it is very difficult to determine in terminally ill patients. One of the prerequisites for deciding capacity is the ability to make and communicate one's preferences. In the case of my grandmother, it was obvious to the family that she had always retained the aware-ness of her situation. Her drive toward choosing death was quite understandable to us, considering her remarks on her current quality of life. Regardless of that, if the case were such that she was fully lacking the capacity to make a decision about her medical treatment, we are under the obligation to respect the substituted judgment of her health care proxy. Once again, this is based on the ethical principle that the autonomy of a competent patient should be the prevailing factor in all decision-making processes in a medical setting.

The third point in the set of criteria for legal withdrawal of medical treatment is a controversial one because quality of life is a value judgment that might be subjective and often divergent between physicians and patients. The search for objective criteria is a question of great complexity that would require a philosophical debate. However, several conditions were determined in 1992 under which most people, were they able to choose, would prefer death. It is generally agreed that minimal quality of life can be described as a condition that has deteriorated beyond recovery and under which the patient appears to suffer discomfort or pain. The quality of life descends below minimal when the patient suffers extreme debilitation as well as complete and irreversible loss of sensory and intellectual ability (for example, patients on opiates for pain).

In my grandmother's case, it could be argued that, given her diagnosis of terminal renal failure with other complications and advanced age, her quality of life was minimal or below. This can be further supported by her understanding that her life no longer carried a quality she had learned to expect from it, which ultimately led her to the act of trying to end it.

As was already mentioned, the fourth condition of family agreement was fulfilled, and the staff disagreement stemming from legal concerns would nowadays be expected to change with the reassurance that withholding or withdrawing treatment are both legal procedures.

In conclusion, I would like to underline several concepts that I see as most important in the ethical decisions regarding terminally ill individuals. Refusal of treatment is controversial in terms of the physician's principle of beneficence. Perhaps a way to avoid this dilemma, however, would be to develop a list of conditions (age, life expectancy with and without treatment, the level of incapacity with and without treatment, the degree of pain and suffering, and so forth) that would be used to determine whether the right to refuse treatment should be respected. The flaw with this view is that the focus shifts to the patient's physical condition rather than her or his choice. This ultimately leads to decision making about the patient instead of by the patient, thus violating the most salient feature of modern ethics and the physician-patient relationship: the patient's autonomy.

Since I have already described the role of autonomy in medical decision making, I want to stress a fact that is often forgotten: refusal of treatment is not a privilege of terminally ill patients but, rather, a right that all patients have and is accordingly respected in the courts. The decision of burdens--versus-benefits as they are reflected in the patient's quality of life is one that can only be made by the patient in compliance with his or her values. This has even been recognized by presidential commission: "Quality of life is an ethically essential concept that focuses on the good of an individual ... whether [his or her] condition will allow the individual to have a life that he/she views as worth living." It is my main recommendation that these words be taken deeply into consideration by both physicians and families involved in making decisions about the lives of patients. In modern "democratic" medicine, the physicians are there to serve and advise, and only in extreme situations of incapacity, emergency, lack of available health care proxy, or patient's waiver of decision making can they decide for a patient.

Agata A. Bednarz is a twenty-four-year-old medical student at the University of Rochester, New York.