The method of clinical ethics in palliative medicine, outlined in the section on clinical ethics, will now be exemplified in a series of considerations of when and why it is ethically justified to withhold or to discontinue life-extending therapy. These considerations refer to the principles most frequently invoked when decisions about treatment have to be made with or for the dying. Specific real cases, greatly modified to protect confidentiality, are described to illustrate how principles have to be interpreted in the light of individual patient histories if they are to offer any practical guidance at the bedside.

When patients refuse treatment

If confusion, the undue influence of other persons, and pathologic depression can be excluded, many hold to the principle that ‘the will of the patient, not the health of the patient, should be the supreme law’ governing decisions about initiating or discontinuing life-prolongation measures. A classic expression of the principle of self-determination is Justice Benjamin Cardozo’s 1914 statement: ‘Every human being of adult years and sound mind has a right to determine what shall be done with his own body’.( In the same vein, the Law Reform Commission of Canada has proposed an amendment to the Criminal Code of Canada to prohibit any relevant paragraph of the code from being interpreted as requiring a physician ‘to continue to administer or to undertake medical treatment against the expressed wishes of the person for whom such treatment is intended’.

This clear and reasonable principle may conflict sharply with strongly held clinical perceptions and certain dominant values in our culture. People increasingly give public support to patient autonomy and to the value of self-determination against the potential abuse of medical technology. However, it is not always easy to live according to the same categories in which we think. People can generally agree on the justification of abandoning life-prolonging procedures when a patient’s loss of consciousness is irreversible. Many, however, experience a strong visceral opposition to discontinuing or withholding life-prolongation treatmentwhether this be respiratory support, chemotherapy, or total parenteral nutritionfrom an intelligent, conscious, and lucid patient.

This spontaneous opposition may be reinforced by bonds to the patient forged during the earlier fight for life. Decisive and distressed family members may also intensify the difficulty of respecting a patient’s refusal of life support. Moreover, although the principle of autonomy or of self-determination may be easy to state, it is often very difficult to ascertain whether some patients who are speaking coherently are not perhaps so dominated by a particular state of mind, such as a depression, that they really are unable to make decisions on their own behalf.

Case study Several years ago, a 27-year-old woman entered a hospital with leukaemia. She had been abandoned by her parents shortly after her birth, and subsequently lived in one foster home after another. Through adolescence she lived a wild sex and drug life and came to despise herself at the age of 19. At this time she met a couple who had never had children, and they offered her a room in their home. She gradually became their own child in fact, if not by law, and this young woman, highly intelligent, went on to finish her schooling, her university undergraduate studies, and had dreams of becoming an architect.

Her leukaemia was diagnosed at this point in her life. A young physician was very supportive, assuring this young woman that effective treatments were available, and that she had every chance of pursuing her professional dream. When he outlined the treatment plan, the young woman agreed to everything except the blood transfusions. She could not accept transfusions she said, because her new parents’ Jehovah’s Witness faith had become her own. She didn’t want to die but could not accept a treatment that for her was tantamount to betrayal of her faith, and to a betrayal of the parents and extended family who had given her a new life.

The physician opposed her refusal, insisted that she was not going to enter the cemetery because of some silly belief, and that she was totally wrong in refusing a treatment, when that refusal was, in his view, equal to a choice of death. When he threatened to force treatment on the young woman, the relationship broke down, and another, older physician entered the scene. He spoke to the younger physician, reminding him of their shared religious beliefs, some of which were looked upon as bizarre and even foolish by some of their very bright and competent colleagues. The older physician said ‘It’s not for us to judge her faith but to make sure she is really speaking her own mind and is not being pressured by others.’

It became quite clear over several considerations that this young woman was quite thoroughly independent, was not being pressured by family or friends, and held the Jehovah’s Witness belief as her very own. Her refusal of transfusions was then respected by the entire clinical team, with the young physician maintaining a very reluctant silence.

After the young woman’s death and funeral, that reluctant silence exploded in rage directed against the older physician who had orchestrated respect for the young woman’s decision. The young physician’s accusation? ‘If it were not for you and your ethics, doctor, she’d be at the university now, and probably dancing on Saturday. Now she’s dead, and you seduced me into betraying my basic mission as a doctor, which is to save life. I could have saved hers.’ The older physician’s response? ‘Do you think it is your mission to save life at all costs? Even at the cost of crushing a patient’s liberty? If you do, you’re wrong. At times liberty is a value higher than health or even life.’

This one case illustrates how difficult it can be at times to respect an instance of human freedom that is highly conscious of itself, superbly capable of self-expression, and articulating itself in a choice that affronts a dominant value or moral persuasion. This case also illustrates how the whole biography of this young patient, not only her clinical condition and the treatments available, entered into the deliberation required to reach a clinical decision. Many, but not all, would argue that the decision reached in this case, matched the full particularity of this young woman. For that reason, it was the right decision. However, if principles can be generalized, specific clinical-ethical decisions cannot.

Case study The clinical circumstances of the following case are quite different from those of the young woman with leukaemia, just discussed. This woman, 53 years old, entered a hospital in a state of renal failure. She was accompanied by her husband and her adult daughter. The physician explained to the woman that she would have to start dialysis, but she refused, stating that it was time for her ‘to go into the arms of God’. Over lengthy conversations that afternoon, the woman’s refusal of dialysis was persistent, and her refusal was strongly supported by her husband and daughter. She appeared lucid and coherent, but fatigued and withdrawn. She insisted on leaving the hospital and returning to her village many miles away, to be cared for by her doctor there, and basically to let nature take its course.

Her son, however, arrived at the hospital late in the afternoon, before her departure, and explained that his mother had been depressed over the last 10 years and had never, in his opinion, been adequately diagnosed or treated. Supported by her son, and against her protests and those of her husband and daughter, the doctor had the woman admitted to hospital and dialysis was started. The woman also received psychiatric attention. Over months she improved and changed her mind thoroughly about the dialysis, with which she collaborated enthusiastically, and about wanting to live. As she gradually rediscovered her former better self, she took up activities and re-established friendships she had long abandoned. Her husband and daughter changed too, recognizing in her the woman they had once loved but who, over years of depression, had become for them a constant source of stress and even a symbol of death.

It was not immediately obvious to the doctor, even after a lengthy conversation that afternoon, that this woman’s depression, not her genuine self, was refusing treatment and seeking death. This case illustrates a situation in which respect for a patient’s self-determination requires clinical opposition to a patient’s and to her family’s refusal of treatment.

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