- The Past and Future of Palliative Care
A national dialogue is now in full flower on how to advance palliative care and expand hospice services in the United States. Driving this discussion are concerns about an aging population, the changing trajectory of illness, advancements in high-tech life support systems, limitations in health care resources, and issues surrounding patient autonomy and the right to a dignified death. The public concern has been magnified by media attention to the legal, ethical, and moral issues surrounding end of life care—withholding and withdrawing care, Kevorkian's advocacy for assisted death, Oregon's legalization of physician-assisted suicide, and health care professionals' support for futility decision-making. In the last fifteen years, the convergence of the hospice and palliative care movements reflects a growing response by a wide range of stakeholders to improve the quality of living for patients and families with serious chronic illness.
Hospice care in the United States began as a grassroots movement to improve the quality of dying for patients at home. It has evolved into a fully funded entitlement program providing care to more than 50 percent of Americans who die of cancer and to approximately 20 to 30 percent of those who die from other chronic diseases. Health care professionals have fostered the more recent palliative care movement, which aims to improve the care of the seriously ill and dying in the hospitals and nursing homes where more than 55 percent of Americans die. The two initiatives share a common philosophy and goal—to improve the quality of life for patients with serious, chronic illness, and for their families as well.
A tipping point in the history of these movements and in public and professional discussions about end of life care came with the publication of the SUPPORT study, which validated widespread concerns among the public and health care professionals about the barriers and challenges to providing humane, compassionate care. This pivotal two-phase study of almost 10,000 patients in five major American hospitals revealed serious limitations in the care of patients with life-threatening illness. Patient and family communication with health care professionals about care at the end of life was poor, the cost of care depleted some family's life savings, and half of patients experienced moderate to severe pain in the last three days of life. Interventions to address communication and pain management were not successful. This study, coupled with surveys of public attitudes and beliefs and focus group discussions, led to a growing consensus that significant barriers—organizational, institutional, educational, and economic—had to be overcome before end of life care could be improved. Three reports from the Institute of Medicine frame the problem and provide solutions by offering evidence-based recommendations to address the field's most challenging issues: the lack of professional education and knowledge on end of life care, and the need to develop and expand hospice and palliative care services to hospitals and nursing homes, where the majority of Americans die. These reports represented the first time the IOM had specifically addressed care of the dying. [End Page S42]
The Hospice Movement
The United States has had a rich tradition in providing hospice care for the terminally ill at home. Initially an advocacy movement, hospice responded to the public's concern about the overmedicalization and institutionalization of care of the dying. In 1975, the first free-standing hospice opened in Connecticut, modeled after the innovative program of Dame Cicely Saunders at St. Christopher's Hospice in London, the 1967 birthplace of the modern-day hospice movement. The movement resonated with a growing number of charismatic nurses, physicians, and volunteers who started community hospice programs to care for the dying at home. Initially, this grassroots effort, with its community-based, home-centered care programs, operated outside the traditional hospital-based health care system, as a parallel initiative for those with terminal illness. By 1982, it had sufficient political and social force to successfully lobby Congress for the passage of the Medicare Hospice Benefit, whose reimbursement formula focused on home-based care and has defined hospice care in the United States.
The Medicare Hospice Benefit is an...