Canadian Medical Association Journal 1996; 155: 893-895
[résumé]
Paper reprints may be obtained from: Dr. Michael Gordon, Baycrest Centre for Geriatric Care, 3560 Bathurst St., North York ON M6A 2E1
© 1996 Canadian Medical Association (text and abstract/résumé)
From a legal and professional perpective, upholding the patient's right to self-determination in medical care is relatively straightforward. Physicians and other health care providers should welcome the patient's participation in decision making and, when appropriate, accept the involvement of a substitute decision-maker or comply with the patient's wishes as expressed in an advance directive. In actual practice, however, problems of clinical and ethical judgement can arise. Those involved may not agree that the directive applies to the situation at hand or may feel that acting upon it would be illegal, immoral or contrary to professional ethics. The case reported here raises issues that must be resolved in order to achieve an outcome acceptable to a patient, his or her family and the professional caregivers involved.
Although the patient received attentive care, his clinical condition gradually deteriorated. He required diaphragmatic pacemakers to assist respiration and, later, a respirator to supplement and, ultimately, sustain his breathing. He needed total nursing care but was able to eat and communicate adequately until very late in his illness. Four years previously he had stated in writing that he did not wish to be maintained alive if he were a "vegetable" or required "permanent artificial feeding." His only living relative and designated substitute decision-maker lived in another city.
Over the next few months the patient experienced recurrent lung, urinary tract and skin infections, poorly controlled seizures and variable but often diminished levels of consciousness. The issue of the living will was raised by his relative. Although the patient required nasogastric feeding and his mental function was vastly diminished, the attending physician and other professional staff were unsure whether his directive clearly applied. They sought to clarify what the patient had meant by the word "vegetable." A comprehensive assessment of competence was made to determine whether, during his state of best wakefulness, the patient could competently clarify, confirm or redirect his plan of treatment. The assessors believed that he could not and that the existing instructions, although vague, provided the only directive obtainable and would have to be interpreted.
The attending physician and other members of the health care team were emotionally and morally uncomfortable in complying with the implied instruction to stop life-sustaining treatment. The patient's relative vacillated and hoped that the clinical ethics committee of the hospital would help resolve the issue.
The committee agreed to help clarify the issues within an ethical and legal framework. After deliberating with the committee the physician and team agreed that the living will was valid and relevant to the current situation. However, some of the team members, especially the physician, were reluctant to stop the respirator in accordance with the living will. They agreed to remove the nasogastric feeding tube and to withhold antibiotic or other therapy in the event of acute illness. The patient succumbed to an infection soon afterward.
Normally the substitute decision-maker and the members of the health care team would be expected to comply with a patient's advance directive unless there was compelling reason to the contrary.[8] The substitute decision-maker would be required to request that any treatments that maintained the patient in a vegetative state be withheld. According to legislation such as Ontario's Substitute Decisions Act (1995), the failure of the substitute decision-maker to comply with the patient's advance directive can be challenged by the attending physician through the office of the Public Guardian and Trustee.[9]
Physicians who accept the principle of patient autonomy and the validity of advance directives are able to follow the instructions of a living will without personal conflict, even when this requires them to stop life-maintaining respiratory support.[10] The main issue in this case was the physician's view that it would be wrong to personally and directly cause the death of a patient.[11] This was complicated by the will's vagueness, the patient's inability to clarify his position and his relative's reluctance to take a stand.
This apparent conflict between the rights of the patient and the values of the attending physician must be examined. A living will is an instrument of a patient's autonomy. When the patient is able to express his or her wishes actively, it is more difficult for a physician to refuse them. A living will is static, however, and some physicians may not consider it to be as authoritative as personal discussions.[12]
How should physicians respond when their ethical or moral principles conflict with the patient's expressed wishes? Codes of ethics such as those of the CMA and the American Medical Association[13,14] state that physicians are not required to carry out instructions that conflict with their own ethical principles. If a physician cannot comply with a patient's wishes he or she is obliged to find another physician to take over the case. But what are the attending physician's obligations if there is no other physician willing to carry out the patient's legally binding directives? One could argue that if the patient's request is legal and consistent with the standard of care established in the jurisdiction, then the physician's objections must be set aside in favour of the patient's wishes.
The ethical and legal basis for patient autonomy is clear. The case for physician autonomy is less compelling, although it does have some basis in tradition, practice and religious belief. In the case reported here, once the physician decided that it was not possible personally to carry out the patient's directive the voluntary transfer of care to another physician was agreed to as a back-up. To avoid such circumstances, physicians should, if possible, inform their patients at the time a living will is drawn up of any difficulties they foresee in carrying out its instructions.[15]
The nonmedical members of the team who felt uncomfortable in complying with the living will were caught in the same quandary. Should nurses and other health care providers have the option of transferring care to other caregivers in the event of a moral or ethical conflict? In particular cases it may be possible to accommodate a nurse's strong ethical or religious beliefs by having another nurse carry out directions, but this is not necessarily translated into institutional or professional policy. In general, the implications for care of such an option would be unacceptable, and professional standards do not appear to allow nurses to ignore the legally acceptable wishes of patients under their care, whether expressed orally or in writing. If the withdrawal of treatment results in the termination of breathing and other physiologic activities, nurses are expected to provide the best level of care to assure comfort and to avoid unnecessary suffering even if they do not agree with the patient's decision.
Although most physicians support conceptually the use of advance directives,[16] they are not always comfortable with their implementation, especially when the withdrawal rather than noninitiation of treatment is required. Such conflict could potentially lead to situations in which patients are not offered the option of trying a therapy which, if not successful, would be withdrawn.[17] A trial of an intervention such as tube feeding or dialysis is attractive to many practitioners because it allows observation of the effect of potentially beneficial therapies without commitment to permanent therapy that may not achieve the desired goal. The difference between not initiating therapy and withdrawing unsuccessful therapy is perhaps illusory, although these two approaches often prompt different emotional responses on the part of care providers.[18,19]
The ultimate professional and moral obligation of physicians whose religious or ethical principles conflict with the expressed wishes of a patient can be examined only within socially and professionally acceptable standards of medicine.[20,21] A patient cannot expect a physician to carry out a request for treatment for which there is no reliable evidence of benefit.[22] Conversely, a competent patient may decline a highly effective available treatment even though the physician strenuously disagrees with this decision, and the physician must, ethically and legally, comply with that wish.[23]
The withdrawal or noninitiation of potentially life-saving treatment is perceived by some physicians as tantamount to euthanasia or physician-assisted suicide. However, in such situations no deliberate action is taken by the physician to end life; therefore, contemporary ethical and legal opinion is that the patient has a right to expect such nondirect action on the part of the physician in accordance with an advance directive.[24] In contrast, proposed physician-assisted suicide legislation in most jurisdictions does allow physicians to choose not to comply with the patient's request.[25]
When ethical conflicts arise physicians have the option of transferring their responsibility to another practitioner. However, this does not address the moral issue of the physician's ultimate obligation and responsibility.[26] If such a transfer is not feasible is it the responsibility of the physician always to comply with the patient's wishes?[27] Strong arguments support the principle that the patient's wishes take precedence over the physician's personal views.[28] This is the essence of medicine as a "serving profession." The patient must never be abandoned by a physician,[29] even at the expense of the physician's personal code, unless honouring the patient's request would result in the certain death of the physician (such as by giving mouth-to-mouth resuscitation for a patient with a lethal communicable disease). A physician's discomfort in living with the consequences of a medical act that favours a patient's bona fide and legal rights over the physician's personal moral or religious principles does not appear to be an excessive price to pay for patients to feel confident that their reasonable wishes will have meaning at the end of their life.
I thank Dr. Peter A. Singer, director of the University of Toronto Joint Centre for Bioethics, and Ms. Gilda Berger, who, at the time of writing, was an articling student at the Willowdale Community Legal Services, for their assistance in the preparation of the manuscript.