The Hospice Movement: Easing Death's Pains

The American hospice movement has done much to bring aid and comfort to the dying and their families. Nonintrusive, humane care for persons with AIDS, a special environment for children with terminal cancer, pain management, the option of letting death occur at home rather than in a hospital, the very acknowledgment and acceptance of death as a natural event in contemporary American culture - all have been made possible in small or large part by the hospice movement. Yet as told by some observers, its history has been marred by compromise and disappointment. The goal of an independent, nationwide network of hospice programs, completely attuned to the needs of the dying and unencumbered by the dictates of the traditional health care system and government bureaucracy, has not been realized. What had been intended as a full-fledged alternative to a system of care that seemed best suited to the interests of physicians and hospital staff, not the terminally ill, has for the most part been reduced to a mere extension of that system. Cathy Siebold, a social worker and psychotherapist who has witnessed firsthand the evolution of hospice care since its modern incarnation in the 1960s, presents a balanced and objective analysis of the movement's accomplishments and failings in The Hospice Movement: Easing Death's Pains. Using social movement theory to frame her discussion, Siebold traces the bell curve of growth, maturity, and decline that, to a point, has characterized the hospice movement. Founded by a diverse group of religious leaders, nurses, social workers, and laypeople, the movement was galvanized by the plight of a silent majority: dying patients, often isolated from family and friendsin a hospital where intensive, last-ditch efforts to "cure" them were valued more than their own comfort and wishes. In its struggle to survive, the movement coalesced fairly quickly around the goal of securing eligibility for reimbursement from federally funded and private insurers. The movement attained this goal in the 1980s, giving the entire concept of hospice care legitimacy and, ironically, a secure place within the same health care system early hospice activists had struggled to escape. Now in a fragmented state as different factions debate what has been accomplished and where to go from here, the movement has yet to enter the final phase of evolution predicted by social movement theory: demise. The reason, the author argues, is that the basic concerns raised by the movement's founders several decades ago persist. What kind of care should the dying receive? And, especially pertinent given the increasing sophistication of medical technology, when should someone be allowed to die? The Hospice Movement will make readers carefully consider the complex ethical and medical issues surrounding death and dying in America.