and the Senate Appropriations Committees both detail a rich research agenda that covers many specific types of cancer, screening and early detection, and finding cures, but not a word about research to help alleviate the symptoms of cancer, either for those who survive or for those who die.
Societal attitudes have evolved, to some extent, as a result of public airing of the issues. Discussions about dying have become more acceptable, and patients and families have increasingly played greater roles in deciding on the goals and details of treatment. Yet the task of ensuring that the best care is available when people are dying and that avoidable distress is minimized to provide the best “quality of death” has to be accomplished even in the face of reluctance of the dying and those around them to grapple with key issues and necessary decisions. Fortunately, there is progress to report.
A constellation of factors has put palliative care on the agenda as a medical issue: the development of technology-intensive approaches for patients with advanced disease, advances in treatment for cancer patients and patients with AIDS, a large and aging elderly population, a growing population of patients with significant neurological and neurodegenerative diseases requiring continuous care, and limitations in health care resources. All of these issues have come together at a time when the country is trying to address how it cares for patients with serious life-threatening illness and the controversies of withholding and withdrawing care, physician-assisted suicide, euthanasia, and a U.S. Supreme Court decision on physician-assisted suicide that asserts a right to palliative care. It is also a time of medical advance and the potential for much greater advances.
The lead in tackling palliative care and improved end-of-life care has been taken largely by private foundations, in particular, the Robert Wood Johnson Foundation, the Nathan Cummings Foundation, the Fetzer Institute, the Commonwealth Fund, and the Project on Death in America, which together have underwritten a wide range of innovative research, training, and public awareness programs. They have laid the groundwork for moving forward, but the foundation focus does not represent a permanent presence in the field and is likely to be scaled back in the future.
Federal government efforts took shape in hospitals run by the Department of Veterans Affairs (VA), in their role as caregivers for elderly and dying veterans. VA developed a faculty scholars program in palliative care, the requirement that pain be recorded as a “fifth vital sign” for all patients, and hospice programs at all its major hospitals. Other early government steps include the Medicare hospice benefit and the efforts of the Health Resources and Services Administration (HRSA) in care provided within the prison system, as well as for patients with AIDS.