Spring 2002

Refusal of Life-Sustaining Treatment and Euthanasia 

A Demand to Die 

Two months after being discharged from three years of military service as a jet pilot, the world of Donald C. exploded in a flash of burning gas. He was then twenty-six years old, unmarried, and a college graduate. An athlete in high school, he loved sports and the outdoors. Rodeos were his special interest, and he performed in them with skill. Upon leaving the military in May 1973, Donald joined his father’s successful real estate business. The two of them had always had a close and warm relationship. On July 25, 1973, they were together, appraising farmland. Without realizing it, they parked their car near a large propane gas transmission line; the line was leaking. Later, when they started their automobile, the ignition of the motor set off a severe and unexpected explosion. Donald, his father and the surrounding countryside were enveloped in fire. The father died on the way to the hospital and Donald was admitted in a critical but conscious state. He sustained second-and third degree burns. Both eyes were blinded by corneal damage, his ears were mostly destroyed and he sustained severe burns to his face, upper extremities, body, and legs. 

During the next nine months, Donald underwent repeated skin grafting, enucleation of his right eye, and amputation of the distal parts of the fingers and both hands. The left eye was surgically closed in order to protect it from the danger of infection; the cornea was badly scarred and the retina was partially detached. His hands, deformed by contractures, were useless, unsightly stubs. When admitted to the University of Texas Medical Branch Hospitals in April 1974, the patient had many infected areas on his body and legs. He had to be bathed daily in the Hubbard tank to control infection.  

From the day of the accident onward, Donald persistently stated that he did not want to live. Nonetheless, he had continued to accept treatment. Two days after admission to the University hospital, however, he refused to give permission for further corrective surgery on his hands. He became adamant in his insistence that he be allowed to leave the hospital and return home to die-a certain consequence of leaving since only daily tanking could prevent overwhelming infection. The tankings were continued despite his protests. His mother, a thoughtful and courageous woman, was frantic; his surgeons were frustrated and perplexed. 

Although calm and rational most of the time, the patient had frequent periods of child like rage, fear, and tearfulness. He engaged his mother by the hour in arguments regarding his demand to leave the hospital, which of course he was physically incapable of doing unless she agreed to take him home by ambulance. 

At this juncture, Dr. Robert B. White was asked to see the patient as psychiatric consultant. Prior to seeing the patient he was given the impression that Donald was irrationally depressed and probably needed to be declared mentally incompetent so that a legal guardian could be appointed to give the necessary permission for further surgery and other treatments. The patient’s mother was understandably in favor his remaining in the hospital. She was deeply concerned about her son’s welfare, and the prospect of taking him home to die from pus-covered sores on his body was more that she could bear. She was a deeply religious woman and was also concerned lest her son die without re-accepting the church, which he had left some time prior to his burns. 

Donald was the eldest of three children. By his family’s account, he was an active, assertive, and determined person, who since child hood had tended to set his own course in life. What or whom he liked, he stuck to with loyalty and persistence; what or whom he disliked, he opposed with tenacity. His mother stated. “He always wanted to do things for himself and in his own way.” Dr. White soon concluded that the mother’s summary was apt. In the course of the first few interviews it was apparent that Donald was a very stubborn and determined man; he was also bright, articulate, logical, and coherent, not by any criterions mentally incompetent. He summarized his position with the statement, “I do not want to go on as a blind and crippled person.” Arguments that surgery could restore some degree of useful function to his hands, and perhaps some useful vision to his remaining eye, were of no avail. His determination to leave the hospital was unshakable, and he demanded to see his attorney in order to obtain his release by court order if necessary. 
 

Dax’s Case Commentary

Robert B. White 

Donald’s wish seemed in great measure logical and rational; as my psychiatric duties brought me to know him well, I could not escape the thought that if I were in his position I would feel as he did. I asked two other psychiatric colleagues to see the patient, and they came to the same conclusion. Should his demand to die be respected? I found myself in sympathy with his wish to put an end to his pathetic plight. On the other hand, the burden on his mother would be unthinkable if he left the hospital, and none of us who where responsible for his care could bring ourselves to say, “You’re discharged: go home to die.” 

Another question occurred to me as I watched this blind, maimed and totally helpless man defy and baffle everyone: could his adamant stand be the only way available for him to regain his independence after such a prolonged period of helplessness and total dependence? 

Consequently, I decided to assist him in the one area where he did want help-obtaining legal assistance. He obviously had the right to legal recourse and I told him I would help him obtain it. I also told him that I and the other doctors involved could not accede immediately to his demand to leave; we could not participate in his suicide. Further more, he was, I said, in no condition to leave unless his mother took him home, and that was an unfair burden to place on her. I urged him to have the surgery; then when he was able to be up and about, he could take his own life if he wished without forcing others to arrange his death. 

But Donald remained adamant, and the patient, his attorney, and I had several conferences. Finally, the attorney reluctantly agreed to represent the patient in court. The patient and I agreed that if the court ruled that he had the right to refuse further treatment, the life-sustaining daily trips to the Hubbard tank and all other life-sustaining treatment would be stopped. If he wished, he could remain in the hospital in order to be kept as free of pain as possible until he died. 

Had Donald been burned a few years ago, before our increasingly exquisite medical and surgical technology became available, none of the moral, humanitarian, medical, or legal questions his case raised would have had time to occur; he would simply have died. But Donald lived, and never lost his courage or tenacity. He has imposed upon us the responsibility to explore the questions he has asked. On one occasion Donald put the matter very bluntly: “What gives a physician the right to keep alive a patient who wants to die?” 

As we increase our ability to sustain life in a wrecked body we must find ways to assess the wishes of the person in that body accurately as we assess the viability of his organs. We can no longer hold our instinctive tendency to regard death as an adversary to be defeated at any price. Nor must we accept immediately and at face value a patient’s demand to be allowed to die. That demand may often be his only way to assert his will in the face of our unyielding determination to defeat death. The problem is relatively simple when brain death has occurred or when a patient refuses surgery for cancer. But what of the patient who has entered willingly on a prolonged and difficult course of treatment, and then at the point at which he will obviously survive if the treatment is continued, decides that he does not want further life that his injuries or illness will impose upon him? 

The outcome of Donald’s case does not resolve these questions but it should add to the depth of our reflections. Having won his point, having asserted his will, having thus found a way to counteract his months of total helplessness, Donald suddenly agreed to continue the treatment and to have the surgery on his hands. He remained in the hospital for five more months until medically ready to return home. In the six months since he left, Donald has regained a considerable measure of self-sufficiency. Although still blind, he will soon have surgery on his eye, and it is hoped some degree of useful vision will be restored. He feeds himself, can walk as far as half a mile, and had become an enthusiastic operator of a citizens’ band radio. When I told him of my wish to publish this case report, he agreed, and stated the he had been thinking of writing a paper about his remarkable experiences. 

Commentary 

H. Tristram Engelhardt Jr. 

This case raises a fundamental moral issue: how can one treat another person as free while still looking out for his best interests (even over his objections)? The issue is one of the bounds and legitimacy of paternalism. Paternalistic interventions are fairly commonplace in society: motorcyclists are required to wear helmets, no one may sell himself into slavery, and so forth. In such cases society chooses to intervene to maintain the moral agency of individuals so that their agency will not be terminated in death or in slavery. Society chooses in the purported best interest (i.e., to preserve the condition of self-determination itself-freedom) of the would-be reckless motorcyclist or slave. Or in the paradigmatic case of paternalism, the choice by parents for their children is justifiable in that at a future time as adults, the children will say that their parents chose in their best interests (as opposed to the parents simply using their children for their own interests.) That is, the paternalism involved in surrogate consent can be justified if the individual himself cannot choose, and one chooses in that individual’s best interest so that if that person were or is in the future) able to choose, he or she would (will) agree with the choice that has been made in his or her behalf. 

Thus one can justify treating a burned patient when first admitted even if that person protested; one might argue that the individual was not able to choose freely because of the pain and serious impact of the circumstances, and that by treating initially one gave the individual a reasonable chance to choose freely in the future. One would interpret the patient to be temporarily incompetent and have someone decide in his behalf. Burt once that initial time has passed, and once the patient is reasonably able to choose, should one respect a patient’s request to refuse life-saving therapy even if one has good reason to believe that later the patient might change his or her mind? This is the problem that this case presents.  

Yet, what are the alternatives which are morally open: (1) to compel treatment, (2) at once to cease treatment, or (3) to try to convince the patient to persist, but if the patient does not agree, then to stop therapy. Simply to compel treatment is not to acknowledge the patient as a free agent (i.e., to vitiate the concept of consent itself), and simply to stop therapy at once may abandon the patient to the exigencies of unjustified despair. The third alternative recognizes the two values to be preserved in this situation: the freedom of the patient and the physician’s commitment to preserve the life of persons. 

But in the end, individuals, when able, must be allowed to decide their own destiny, even that of death. When the patient decides that the future quality of life open to him is not worth the investment of pain and suffering to attain that future quality of life, that is a decision proper to the patient. Such is the case even if one had good reasons to believe that once the patient attained that future state he would be content to live; one would have unjustifiably forced an investment of pain that was not agreed to. Of course, there are no easy answers. Physicians should not abandon patients when momentarily pain overwhelms them; physicians should seek to gain consent for therapy. But when the patient who is able to give free consent does not, the moral issue is over. A society that will allow person to climb dangerous mountains or do daredevil stunts with cars has no consistent grounds for paternalistic intervention here. Further, unlike the case of the motorcyclist or the would-be slave, in the case one would force unchosen pain and suffering on another in the name of his best interests, but in circumstances where his best interests are far from clear. That is, even if such paternalistic intervention may be justifiable in some cases (an issue which is different from the paternalism of surrogate decision making, and which will not contest at this point), it is dubious here, for the patient’s choice to avoid considerable hardship. Further, it is uniquely intimate choice concerning the quality of life: the amount of pain, which is worth suffering for a goal. Moreover, it is, unlike the would-be slave’s choice, a choice, which affirms freedom on a substantial point-the quality of one’s life. 

In short, one must be willing, as a price for recognizing the freedom of others, to live with the consequences of that freedom: some persons will make choices that they would regret were they to live longer. But humans are not only free beings, but also temporal beings, and the freedom that is actual is that of the present. Competent adults should be allowed to make tragic decisions, if nowhere else, at least concerning what quality of life justifies the pain and suffering of continued living. It is not medicine’s responsibility to prevent tragedies by denying freedom for that would be the greater tragedy.

Course Overview Lecture Schedule Faculty Assignments Handouts Cases Small Groups Contact Us Links Home