Reconceiving the family. The process of consent in medical decisionmaking

Medical ethics has rediscovered the family. At least two factors have contributed to widening the focus from the individual. There has been a general revival of communitarian rhetoric in the United States that, of course, brings the role of social relations to the fore. Similarly, we should not underestimate the natural progression and development of medical ethics. Having focused on the rights of the patient for so long, it follows that ethicists now wish to map the relationships surrounding the individual that may affect medical decisionmaking. Because this interest in the family is a concern with the significant relationships that surround the patient, the family is described in terms of "closeness," not biology. This way of describing the family is commonplace in medical ethics and is a meritorious convention.[1] Thus, when John Hardwig asks, "What about the Family?"[2] he asks whether there is any role in medical decision-making for those close to the patient This is the question because our thinking about medical decisionmaking is entirely patient-centered. This patient-centered ethic is systematized as the doctrine of informed consent. Without much exaggeration it can be said that all of medical ethics is but a footnote to informed consent. It is the concept that first called medicine out of its paternalistic slumber and into the open light of public scrutiny. Informed consent serves as the foundation upon which answers to new questions and problems are constructed. Informed consent is a kind of doctrine, that is, an amalgam of legal and philosophical reasoning with a conceptual framework and a number of specific prescriptions. This framework entails a few basic actions and presupposes certain conditions. At the heart of the doctrine is the legal principle that "the right of a competent person to refuse medical treatment is virtually absolute."[3] The exercise of this right presupposes that the patient must receive all information relevant to the decision to undergo or forgo a proposed treatment and that he or she must comprehend the information. The legal principle indicates that the patient needs to be competent and it is also implicit that the choice is relatively freely made. Although influence is acceptable, all forms of coercion are beyond the pale.[4] The individualistic nature of this line of thought is clear. The person is conceptualized as possessing a sphere of protected activity or privacy free from unwanted interference. Within this zone of privacy, one is able to exercise his or her liberty and discretion. Within this protected sphere take place disclosure, comprehension, and choice, which express the patient's right of self-determination over her body.[5] Of course, these are legal formulations. The philosophical justification for them draws on egalitarian or democratic intuitions regarding personhood. The person is opaque to others and therefore the best judge and guardian of his or her own interests. Although the physician may be the expert on the medical "facts," the patient is the only individual with genuine insight into his private sphere of "values." Because treatment plans should reflect personal values as well as medical realities, the patient must be the ultimate decisionmaker.[6] Once we sketch the person in this way, the problem for ethicists is obvious. The doctrine of informed consent is based on an individual profile rather than a family portrait. The individual is outlined first, and only then do we ask where close others may be added to the picture. Because the philosophical and legal premises of the doctrine leave few other reasonable options, the family is usually conceived as comprising competing interests. Such a result is not adequate to our ordinary intuitions regarding the relationship of the patient to the family. Furthermore, these premises limit ethicists to arguing about the relative merits of these rival bundles of interests. Once we understand the relationship between the doctrine of informed consent and the inability of medical ethicists to adequately describe role of the family in medical decisionmaking, the tasks become clear. …