by John Parry
MPDLR/Vol. 9, No. 3

Past attempts by policy experts and scholars to synthesize the legal policy considerations behind a general limited right to refuse treatment and specific legislative efforts to regulate the use of electroconvulsive therapy (ECT) have met with considerable controversy, confrontation, and misunderstanding. It will be argued on the basis of the following legal analysis that the parameters of the law of informed consent and substituted decisionmaking, as articulated in the leading court decisions and state legislation, provide a reasonable framework upon which to develop sound policy judgments about the right to refuse electroconvulsive therapy.

The components of the law that form the basis for this conclusion, from the most general to the most specific, are: the decisionmaking rights of mentally disabled persons; the principle of informed consent; the law of substituted consent for mentally incompetent persons; and informed consent as applied to ECT. Together, these interrelated and pyramidal legal concerns provide a framework that defines what the law requires before mentally disabled persons may accept or refuse ECT.

Decisionmaking Rights of Mentally Disabled Persons

A broad overview of the decisionmaking rights of mentally disabled persons indicate that while the law could be improved through finer discriminations in the establishment and application of standards that address more precisely the actual abilities and disabilities of each individual, the law does recognize a right of self determination expressed by mental patients or their authorized substitute decisionmakers The free expression of this right usually takes legal precedence over the patient's medical best interests alone.

While conditions have improved in the institutional "snake pits," still of recent memory, extremely serious problems persist, as evidenced by testimony before the Senate Subcommittee on the Handicapped earlier this year. From experts that appeared before the subcommittee and other sources, it is known that mentally disabled persons, particularly those individuals who reside in public psychiatric hospitals and other state institutions, are too frequently victims of discrimination, neglect, and abuse.

Beyond the issues of poor care that are identified with inadequate resources and incompetent, or on occasion, mean spirited caregivers, several structural issues involving the law and outmoded models of institutional care exist. In general, mentally disabled persons remain the subjects of overinclusive limits on their decisionmaking rights that are based on labels and categorizations that tend to ignore or exclude individualized assessments of their actual abilities and disabilities. Examples of this phenomenon of unnecessary restrictions can be seen in voting and driving, the overuse of plenary forms of guardianship, and the tendency to rely on institutional care when better, no more expensive placements could be funded in the community, just to cite a few. The medical and social service models often reinforce this tendency towards overinclusive categorizations, due in large part to sincere paternalism and professional self interest.

At the other end of the spectrum, the legal advocacy model of patient representation often tends towards underinclusive categorizations, based on an equally sincere belief in the principle of self determination and similar professional interests.

When this model is used, some individuals who clearly will benefit from care and treatment are allowed to follow the counsel of their own minds, even in circumstances in which caregivers, but not the legal system, are convinced the patients are incompetent to decide for themselves.

What is difficult for many service providers to accept is that the legal advocacy model is consistent with traditional American beliefs and thus reflective of the law as it has been applied to everyone in our society. Even though there have been notable exceptions in which notions of self determination have been compromised where mentally disabled persons were concerned, in general, modern legal theory presumes that every person, mentally disabled or not, is capable of functioning normally in exercising any right or privilege unless facts can be marshaled to demonstrate that specific incapacities exist. The law generally endorses the view that, until a person has been adjudicated incompetent or a legitimate emergency exists and can be demonstrated after the fact, the principle of self determination will win out over the best interests of the individual as reflected by community or medical standards.

Mentally Disabled Persons and Voluntary, Knowing, and Competent Consent

Informed consent is actually three concepts merged together: voluntary, knowing, and competent consent. In general, the principle of informed consent governs the administration of medical care, defining the legal relationship between the patient and the medical provider. Before major changes are recommended and implemented in the existing law of informed consent for mentally disabled persons, it is important to consider that substantial empirical data is missing on how the present laws operate as viewed by patients, the medical providers, and society.

To date, relatively few empirical studies have evaluated the elements of informed consent, particularly the adequacy of the information needed for mentally disabled persons to make informed medical choices. The most comprehensive study to date suggests that the provision of information is inadequate and many patients are not primarily concerned with utilizing available information to make their own decisions. However, even this study was limited in scope, focusing on just three psychiatric units, an evaluation center, a research ward, and an outpatient clinic, all associated with the same university hospital.