Ethical Considerations in the Treatment of Head and Neck Cancer

David P. Schenck, PhD

Disclosures

Cancer Control. 2002;9(5) 

In This Article

Rethinking Rules and Principles

The best known approach to biomedical ethical problem solving that has developed over the past 30 years is principle ethics, or principlism. This approach involves examining pertinent aspects of a troubling ethical situation from the point of view of each of the now canonical "four principles": autonomy, nonmaleficence, beneficence, and justice.[22] Principlism requires examining not only the pertinent medical facts of the case, but also the effects of any decision on others (eg, physician, family, society) and any other factors that may have moral claims in the given situation. Because conflicts between principles frequently develop, and especially, it seems, between autonomy and beneficence, the challenge is to specify precisely what each means in a particular case and then balance the principles against one another in an effort to determine which one(s) should take precedence. In cases where the physician recommends continued treatment, believing that real medical good can be accomplished, and where the patient has decided that being allowed to die is appropriate according to his values and life story, autonomy and beneficence must be very carefully specified and balanced. Despite its prominence in the canon of bioethics, however, principlism has its critics. Some argue that principlism by itself is insufficient for ethical problem solving,[23] and others maintain that it is not a systematic method at all but rather a loose collection of principles with no structured process of decision making.[24] A discussion on the internal validity of principlism is not included in this article, but some specific aspects of it warrant rethinking, especially in view of disfigurement/ dysfunction,loss of the person,and intimacy problems as found in patients with head and neck disease. Particularly important are autonomy and beneficence,as well as sub-elements of each -- informed consent and paternalism, respectively.

In principlism, each of the four principles is theoretically equal to the others, at least until the process of specifying and balancing their individual importance in a specific case begins. While there is no hierarchy among them in the abstract, autonomy has effectively become the trump principle today. If a conflict arises between a patient's autonomy and one of the other principles, autonomy always seems to be the default (except when a patient demands something not medically indicated or that would violate the rights of someone else). The reasons for the ascendancy of autonomy in the 20th century are not reviewed here; suffice it to say that events such as the Holocaust, the Tuskegee Syphilis Study, and other violations of persons in the name of medicine or the good of humanity have been framed largely in terms of the lack of respect for persons and as cavalier paternalism. To respect other persons and their autonomy is to recognize their rights to self-rule or self-governance and their need to act freely, with understanding and without coercion if they are genuinely to act with true autonomy.[22] Given the emphasis Americans have historically placed on the rights of the individual, it is little wonder that autonomy would come to occupy a special place in ethical decision making. Where decisions in health care were once largely in the hands of the beneficent healer, they are now thought to be more appropriately in the hands of the autonomous patient.

This shift in healthcare decision making to the patient can be problematic. The pendulum has swung too far. It was appropriate for the kind of medical paternalism that prevailed up until approximately the midpoint of the last century to be countered by an assertion of the rights of individuals, but its replacement with an equally rigid principle of autonomy will not bear scrutiny as the obvious antidote. There is nothing that argues for autonomy as the antithesis of beneficence except that paternalism, a sub-element of beneficence, will violate another's autonomy if practiced in the extreme. The idea that paternalism, and beneficence by extension, are the opposite of autonomy has emerged as the result of a particular and unfortunate history. Events such as the Tuskegee Syphilis Study, although they are undeniable gross violations of the rights of vulnerable individuals and unquestioned abuses of other persons, are hardly analogous to the actions of the well-intentioned clinician who nevertheless violates a patient's autonomy with strong paternalism. Furthermore, as mentioned above, there is no theoretical hierarchy of principles. Principlists refer to them as prima facie, meaning that until it can be shown that one should take precedence over another in a given context, they should all be respected equally. In fact, save for some compelling factor to the contrary, there is no reason that autonomy and beneficence cannot be complementary.

Informed consent is also problematic and demands rethinking. It is generally understood that for consent to be truly informed,certain requirements must be met: the patient must be competent to understand what is conveyed, be able to make a rational decision, and be able to make the decision voluntarily and without coercion. The patient must also receive full disclosure of relevant information and must be given a recommendation by the physician.[22,25] Determining whether all of the elements are satisfied can be difficult, and even if they are satisfied in a legalistic sense, informed consent may still be merely illusory. How competent can patients be and how clearly can they understand the information given to them when they are faced with life-threatening disease? We know that patients do not "hear" all that is communicated to them when they are in a highly vulnerable state. In addition, can we genuinely affirm that patients make free, uncoerced choices when offered recommendations under the Aesculapian power of their physicians? If informed consent is truly meaningful beyond legal hoops to jump through to protect physicians and hospitals -- and it must be if we are serious about our ethics -- these are not just academic questions. In oncology of the head and neck, with its attendant issues of disfigurement, dysfunction, and/or loss of identity, it may be even less likely that any consent to treatment will be genuinely informed than in less threatening medical contexts. Unless these patients are extraordinarily endowed with coping skills and foresight, they are likely to either refuse the indicated treatment out of fear or decide they really have no choice other than to accept the recommendations. In the latter case, there is no truly informed consent. In the former, the coercion afforded by fear and/or the inability to have an accurate understanding of life posttreatment inhibits a truly autonomous decision.

Although the problematic nature of autonomy, informed consent, beneficence, and paternalism in medicine is a complex subject that cannot be covered adequately here, it is evident that these principles require careful consideration, especially in head and neck care. A man who presents with a massive tumor of the base of tongue, who will almost inevitably die of his disease, who receives a strong recommendation for total glossectomy so as not to succumb to an even more difficult disease process, and who nevertheless categorically refuses even to consider such an intervention can probably expect the surgeon to accede to his wishes, albeit reluctantly. The surgeon knows what the patient can understand only marginally at best, which is that the recommended therapy can make the dying process significantly easier, but he will nevertheless respect the patient's autonomy in refusal. This is not to fault the surgeon whose practice environment today will undoubtedly not allow the time to work through the issues with the patient in the hopes of bringing him to a properly autonomous, informed decision. However, if the issue of time constraints is set aside momentarily, there is a potential solution to the apparent conflict between the "beneficence" of the physician and the "autonomy" of the patient.

Pellegrino and Thomasma[26] offer possibly the best hope for resolution in their concept of "beneficence-intrust," by which they mean "that physicians and patients hold 'in trust' . . . the goal of acting in the best interests of one another in the relationship." They describe this relationship as a fiduciary one based on the possibility of negotiation and one that rests on treating the whole person. It is guided by beneficence, but not a beneficence that can become paternalistic as usually conceived. This beneficence secures the patient's autonomy through negotiation and an understanding of the patient's values. Under beneficence-in-trust, the physician is the steward of patient values and preferences in a relationship that neither abandons the patient to some radical notion of autonomy nor becomes outright paternalistic. It is a relationship in which the physician seeks to ensure that the patient acts with real autonomy and informed consent. In this relationship, autonomy and beneficence would appear to flow together and avoid becoming antagonists. This cannot occur, however, without making virtue as much a part of the equation as principles, an issue that will be discussed below.

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