Hastings Center Report

The shocking, clamoring, and very public intrusion into the life and death of Terri Schiavo underscored the damage done over recent decades to the personal nature of medical care and to the privacy many desire for such personal matters. But medical care is personal, and in more than one sense. It is personal because it involves the care of persons by persons. It is personal because it rests on a relationship between the caregivers and the patient or the patient's surrogates. Most of all, it is personal because sickness, whatever other professional or community ramifications it may have, is something that happens to a person. Except in trivial illness, almost nothing of persons is untouched, including their past and future, everyday life, spirituality, knowledge—everything. Especially deeply touched, however, are the sick person's relationships. Sickness highlights the intricacies and complexities of families and relationships and how these change as we grow up, marry, acquire new responsibilities, and so forth, all of which is determined in part by our culture and society. The intervention of the law into Schiavo's care is a reflection of the complications that relationships may present when personal troubles arise.

A smooth-running society requires a certain sameness or conformity of persons, and this expectation of conformity easily tricks us into believing that people are really pretty much the same. Persons, however, are all different, and those differences are compounded by sickness. The abnormal biological processes that express themselves in sick persons are each as different as the persons themselves. We may think otherwise because the names we give diseases and the way we analyze and compare cases and decide on treatment guidelines strongly emphasize sameness and suppress differences. For care to be good, however, it must be individualized (except in trivial instances), and its individuality becomes more striking as the care unfolds over time—occasionally, as with Terri Schiavo, over a very long time. If you think of her care as consisting of the feeding tube or her life support, you may wonder how it could be different for anyone else, but widen your view to include the myriad details of how these things are managed and how their frequent complications are avoided or dealt with, and the individual nature of care is again evident. Everything that happens to the patient has antecedents and consequences that, along with the pathophysiology, make any case what it is. It is for these reasons that the relationship between patients and physicians is a legitimate, indeed essential therapeutic tool in medical care. It takes individuals to deal with individuality. People do not take measures for their own care or for the care of others because they should, but because someone they trust encourages the action, and they believe that person. Yes, care is frequently rendered in the absence of a good therapeutic relationship, and while such care may be adequate, it is seldom the best.

Traditionally in American and other individualistic Western societies, things personal have also been private. In many other cultural and religious traditions, this is not the case. What people do is seen as part of the family and the community, and their actions are part of the family or community's life, honor, and blame. This previously valued distinction between the personal (and therefore private) and the public has eroded considerably since the 1960s and 1970s. A feminist slogan of that era, "the personal is the political," caught on, and its influence spread. Invoked in connection with gender-related injustice, the phrase implied that as long as male-female relationships were kept only personal, inherent wrongs could not be righted. Slogans like this are proposals for action, disguised as truths about the world. As Kenneth Minogue recently observed, their meaning is often obscure, but they contain sleeping implications that may awaken in new circumstances and demand policies that affront other cherished values, such as individual freedom.

Fundamentalist religions expect personal relationships and professional activities to accord with their religious principles and values. As these religions in the United States have extended their political influence, their principles have come into conflict with the values...