You Have a Right to Choose if we Agree

My first encounter with informed medical consent came as a young law student. I was assigned to assist a lawyer in the defense of an older man who had refused treatment for leukemia. His daughter objected, and asked the court to appoint her to be his conservator so she could compel him to undergo treatment.

When the father spoke to my supervisor, his position became clear. His atypical choice was informed by his cultural background and personal character. An immigrant from Eastern Europe, he was adamantly against yielding control of his life to his daughter. He had tried the medicines, and found they sapped his strength and made him weak. He would rather go on strong for as long as possible and remain his own master.

At the hearing, the lawyer told the judge that his client understood his illness and the prospect of oncoming death, and still chose for his own reasons to turn down further treatment. After confirming this with the man himself, the judge denied the daughter’s request, leaving him to live or die on his own terms.

In the aftermath, it occurred to me that there had been no true issue concerning the man’s ability to comprehend the situation or express his feelings. Yet, he was still forced into a court fight because he decided to turn down treatment. Shouldn’t his clearly stated opinions be enough?

Dr. Alec Buchanan of the Yale Department of Psychiatry evaluated the existing state of law and practice concerning informed consent and reported his findings in a paper in the Journal of the Royal Society of Medicine. Examining medical and legal approaches to the issue of capacity in such matters, he found that “mental capacity is not the sole determinant of what will happen when a patient chooses a course of treatment that doctors consider against the patient’s best interests.” Other factors included the views of relatives, “previous expressed views of the patient,” the opinions of medical staff, and the values of society as a whole.

Buchanan pointed out that acceptance of a patient’s medical decision by professionals and family depends in part on the complexity and gravity of the issue. The harder the choice, or the more grave the potential outcome, the higher the level of scrutiny to which any choice will be subjected. Legal opinions have also followed this logic, holding that “the more serious the decision, the greater the capacity required.”

Such scrutiny is in conflict with the value of autonomy, the ability of the individual to act freely in accordance with their own perceptions and belief. Buchanan says that in the context of medical consent, the importance of autonomy increases with the level of a person’s capacity.

While it is clear that these observations correctly describe how the real world works, it is disturbing that they reflect true disrespect of individual autonomy. If it is acceptable to drag clearly lucid people into court to measure their mental capacity for medical consent, why not question capacity for other decisions? The potential outcome of a poorly chosen marriage might be a devastating divorce, with tragic paths for children of the union. A business contract might eventually lead to unforeseen results which could end in someone’s lifetime ruin. Yet we do not find clearly lucid individuals brought into court in advance so they may be judged as to their ability to make those decisions. At most, poor outcomes in domestic or business pursuits might result in a later determination of incompetence.

Of course, in the area of medical treatment, a poor choice may result in permanent injury or death. For this reason, the law permits family, medical staff, and “other interested parties” the option of advance intervention in health care decisions. Such action is a direct negation of the individual’s right to choose in the most crucial and intimate of matters.

How to both assure competence and maintain autonomy?

From the standpoint of the medical profession, the appropriate emphasis should be on ethical and legal education for professionals to assure that the rights of individuals are not violated.

From the standpoint of the patient, there is no substitute for a properly drafted advanced medical directive or power of attorney which clearly sets forth his or her specific desires and which names an individual who can honestly, quickly, and accurately discern a patient’s wishes in the context of medical treatment. Such an individual can sustain the decision of a patient if a question of capacity arises.

The ability of a physician or of the state to override the wishes of a patient and to violate their body should be closely and exhaustively controlled. It should not depend on the subjective assessment of capacity made by someone else, regardless of their qualifications.

Reference

Buchanan, A. (2004). Mental capacity, legal competence and consent to treatment Journal of the Royal Society of Medicine, 97 (9), 415-420 DOI: 10.1258/jrsm.97.9.415