Access to Hospice Care: Expanding Boundaries, Overcoming Barriers

Bruce Jennings
True Ryndes
Carol D'Onofrio
Mary Ann Baily

In January 2000 The Hastings Center and the National Hospice Work Group, in collaboration with the National Hospice and Palliative Care Organization, began a project on Increasing Access to Hospice Care, with support from The Arthur Vining Davis Foundations of Jacksonville, Florida, and the Nathan Cummings Foundation of New York, New York. A preliminary planning grant from the Nathan Cummings Foundation helped to launch the project with a meeting of hospice and palliative care leaders in September 1999. 

The work of the project was organized around the deliberations of a national task force of distinguished experts on hospice, palliative care, and end of life care. Working with numerous other experts on health policy from around the country, the task force comprised a multidisciplinary group of researchers, scholars, policy analysts, health care executives, and health care providers from medicine, nursing, philosophy, theology, the social sciences, and hospice. The task force met four times during the period 2000-2002 to review hospice policy and practice, engage in discussion of the ethical and social values served by hospice care, investigate the barriers to greater access and earlier access to these services, and hear presentations on many facets of care of the dying and health policy.

Many of our discussions and much of our analysis were oriented around the perspectives and viewpoints of several stakeholder groups, including: (1) consumer and patient groups, (2) health professionals, (3) the hospice community, (4) policymakers from both the public and the private sector, and (5) the community of professional ethicists and other scholars in the area of health policy and health systems research. In between project meetings, discussion and debate continued through a lively forum set up on a special web site made possible through the support and technical assistance of Bondware, Inc.

This special supplement grows out of the project as a whole and the work of the task force. The lead article, "Access to Hospice Care: Expanding Boundaries, Overcoming Barriers," written by the project co-directors, provides a comprehensive report on the deliberations and conclusions of the project. It is not a consensus document in the sense that each member of the task force endorses it in all details, but we have done our best to present an accurate and faithful reflection of the group's thinking, and this analysis certainly would not have been possible without the benefit of their insight and expertise. The accompanying essays by task force members Ira Byock, Stephen Connor (writing with Jocelia Adams), Carol D'Onofrio, Linda Emanuel, Bruce Jennings, Hilde Nelson, True Ryndes, Jack Stanley, and Daniel Sulmasy discuss in more detail several key issues that surfaced during the course of our deliberations but could only be touched on briefly in the project report. These thoughtful essays also reflect the breadth and complexity of the issues with which the project as a whole had to grapple.

In addition to the Task Force members and other project participants, this supplement and the project on which it is based would not have been possible without the extraordinary support and assistance of many people.