Ethical Considerations in the Treatment of Head and Neck Cancer

David P. Schenck, PhD

Disclosures

Cancer Control. 2002;9(5) 

In This Article

Disfigurement and Dysfunction: Loss of the Person

Patients with life-threatening disease are faced with the burden of trying to approach the final chapter of their life narratives in a way that fits their values and prior life experiences. As Conley[14] has noted,we in the West tend to view death as either an outside agent "intruding into human existence as the ultimate mutilation" or an integral, natural part of the human experience. Regardless of our views,we are dealing with the end of being. Nothingness, the void, the end to consciousness are all offensive to the human spirit. The fear and anguish accompanying such thoughts can be overwhelming in contemplating death.

In the patient who also suffers disfigurement or loss of function, that fear and anguish may be compounded due to several factors. One is that disfigurement may be perceived as a manifestation of the grotesque. The disfigured person is seen, at least subconsciously or symbolically, as something less than fully human, even to those close to him. The individual is surely no less human than before, but a radical change in appearance to the "unnatural" is suggestive of the monstrous, which may then become threatening or frightening and thus repulsive. This can then result in the change of identity of the person, if only minimally and symbolically. Those visible aspects by which we are known in our uniqueness -- our facial appearance and the sound of our voice -- cannot radically change without that identity being altered and thus "lost." What is lost, then, is not only the unique identity of the individual, but also the "humanness" of the person.

Another factor that compounds fear and anguish is the very loss of personal self. The individual who existed prior to the disfigurement or dysfunction is gone, even while the body continues to live. An enormous gap is then opened between the altered individual and others. The patient is now a stranger in what can be a frightening space without the usual network of connections. The mere suggestion of the grotesque has a distancing effect. The patient is now a person apart, with relationships with others having been broken at some level. Like the protagonist in ancient Greek tragedy who must suffer removal from society because something in his character renders him incompatible with the establishment, the disfigured patient is also seen as someone estranged, at least symbolically. The separation of the protagonist in Greek tragedy may be effected by his actual death; the disfigured individual may suffer a symbolic death.

Therefore, in head and neck cancer cases, attention must be paid to a loss of or potential change in identity, a loss of the self, or the death of the person within an otherwise living body. Experience shows that some patients do cope well. Studies have also demonstrated that while psychological problems may increase in severity over time,[6] appropriate interventions to develop coping skills can mitigate these problems.[4,19] This may seem to be intuitive, but it would be insufficient to teach coping skills without also addressing the loss of self such that patients may be enabled to make their "death of self," as well as their impending physical death, part of a meaningful whole life narrative that they author. That is, they must be returned to control of their situation. This depends on many factors, such as length and history of the illness, as well as psychological and spiritual issues. Most important is that patient values and a narrative construct compatible with them be seriously addressed if the healthcare team is to help patients make appropriate choices in terms of their care.

To help their patients make those appropriate choices,physicians must develop some understanding of each patient's value system and life view, whether it be profoundly religious, philosophically highly sophisticated, or relatively simple and unsophisticated. Some argue that it is unrealistic to expect the physician to develop such an understanding.[20] Others argue that acquiring some understanding of a patient's values and life history is not unreasonable.[21] This article makes the argument that some understanding, albeit limited, of the patient's value system is possible, and that the physician has a moral imperative to make the attempt to understand it if a true fiduciary commitment is to be kept.

A final point should be made here. Even without the threat of disfigurement or dysfunction in a given case, there remains a problem of intimacy. With head and neck disease being the site of much of the visible manifestation of the person,and to the extent that this is related to the unique character and personality of the individual, head and neck disease affects intimate aspects of the person. The treatment of patients with cancer of the head and neck requires sensitivity to this issue, even if disfigurement or dysfunction does not occur.

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