Response to "End-of-Life Family Decision-Making from Disclosure of HIV through Bereavement"

Article excerpt

When AIDS and HIV first began to arouse public notice as an incipient epidemic, I was introduced to its complexities by a friend, Pat Biernacki, who was becoming one of the pioneers in outreach work in the streets of San Francisco. At the time, I recollect saying that for a few years we would all be concerned with issues of mortality and prevention, but that a major persisting problem, in America at least, would be to manage this new form of chronic illness. It did not take much foresight to predict that, with improved treatment, the people with HIV would be living longer-though eventually dying from AIDS-and would be cared for, like those with other chronic illnesses, both at home and in health facilities. This recollection leads me to the main theme of my commentary on Stewart's article, a commentary stimulated especially by the richness of her quotations from family members and lovers but also by my knowledge both of chronic illness and of behavior around people who are defined as dying.

As with all chronic illnesses, one useful way of thinking about this particular one is to identify some of its major features. Among those are its physiological, social, and psychological ones, but also its political features. Thus, AIDS leads inexorably eventually to death, but when and with what symptomatology are uncertain. Like many other chronic illnesses, it is treated with medications that may bring about many discomforting side effects. Social and psychological responses are also uncertain, both those of the sufferers and their families, friends, and other people. Among the more conspicuous responses are blaming of self and/or victim, rejecting, and stigmatizing, but also forgiving, closing ranks, and so on. The political aspects of HIV/AIDS are startling: the passionate debates, the legislative fights, the assertion of rights. AIDS has certainly contributed to the growing willingness in the media and in common speech to talk openly about death, as compared, say, with the 1960s, when the death and dying movement sought to counter this silence. An integral aspect of this public openness is the public visibility of the AIDS death rate, as knowledge of that rate affects both the immediately involved populations and gets filtered through the media.

But to return to the issue of the "features" of HIV/AIDS: Some of these are certainly shared with other chronic illnesses. Yet some of them are, if not unique, at least more rarely characteristic of other illnesses-especially the political and the stigmatic (caused by "gay" activity) aspects. If one scrutinizes the extensive quotations in Stewart's article, in which family members so freely and passionately express themselves, it can be seen that many of their dilemmas, decisions, reactions, and behaviors are not at all unique to families where a member is defined as dying. To mention just a few commonalities: Despair follows the dread diagnosis (especially if death is involved)-the many autobiographies of people who have written about this are vivid in their description. Not unusual either is the anger at and acute hopelessness of family members when they find they cannot prevent hospital staffs from keeping their relative or lover alive beyond the point where it is senseless, they believe, to do so. Also, the many closure gestures and rituals that are reflected in Stewart's quotes are well known by anyone who has lived through or studied the last phases of dying and those shortly after death. Also, certain other illnesses precipitate civic action by family members, as they find relief and gratification in working in organizations or groups associated with one or another illness. …