Care of the young hemophiliac: new socioeconomic demands and the changing patient-physician relationship

Over the past two decades, greater knowledge about hemophilia and vastly improved treatment have led to a veritable revolution in the care of this crippling disease. In prospect is an era in which both short- and long-term sequelae may be avoided altogether. Much of the progress has been effected through novel methods of care delivery in which the relationship of the physician and his patient begins to resemble more a partnership between equals than the traditional dependency of the chronically handicapped on his doctor. Yet with, and because of, these changes ethical and legal aspects are inevitably introduced, some of which are discussed in the article. These deal with issues of public policy, distributive justice, avoidance of harm, risk imposition and risk-taking, confidentiality, and paternalism. When applicable, the discussion surrounds a prototypical case which illustrates the real dilemmas which treaters and patients may have experienced or may encounter. Following each issue is a discussion intended to show how the ethical and legal dimensions may be analyzed in a way which allows certain justifiable decisions. These analyses are themselves based upon ethical premises which are commonly accepted, legal precedent, or both. While some of these considerations are relevant to the older hemophiliac as well, most deal with topics affecting those most likely to benefit from the advances and to contend with the challenges of this new era of hemophilia care: the young hemophiliac and his physician.