EXPANDING BOUNDARIES,OVERCOMING BARRIERS
A
CCESS TO
BRUCE JENNINGSTRUE RYNDESCAROL D’ONOFRIOMARY ANN BAILY
A S
PECIAL
S
UPPLEMENT TO THE
H
ASTINGS
C
ENTER
R
EPORT
Hospice Care
I
n January 2000 The Hastings Center and the NationalHospice Work Group, in collaboration with theNational Hospice and Palliative Care Organization,began a project on Increasing Access to Hospice Care, with support from The Arthur Vining Davis Foundationsof Jacksonville, Florida, and the Nathan Cummings Foun-dation of New York, New York. A preliminary planninggrant from the Nathan Cummings Foundation helped tolaunch the project with a meeting of hospice and palliativecare leaders in September 1999.The work of the project was organized around thedeliberations of a national task force of distinguishedexperts 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 mul-tidisciplinary group of researchers, scholars, policy ana-lysts, health care executives, and health care providers frommedicine, nursing, philosophy, theology, the social sci-ences, and hospice. The task force met four times duringthe period 2000-2002 to review hospice policy and prac-tice, engage in discussion of the ethical and social valuesserved by hospice care, investigate the barriers to greateraccess and earlier access to these services, and hear presen-tations on many facets of care of the dying and health pol-icy. Many of our discussions and much of our analysis were oriented around the perspectives and viewpoints of several stakeholder groups, including: (1) consumer andpatient groups, (2) health professionals, (3) the hospicecommunity, (4) policymakers from both the public andthe private sector, and (5) the community of professionalethicists and other scholars in the area of health policy andhealth systems research. In between project meetings, dis-cussion and debate continued through a lively forum setup on a special web site made possible through the sup-port 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, Over-coming Barriers,” written by the project co-directors, pro-vides a comprehensive report on the deliberations andconclusions of the project. It is not a consensus documentin the sense that each member of the task force endorses itin all details, but we have done our best to present anaccurate 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. Theaccompanying essays by task force members Ira Byock,Stephen Connor (writing with Jocelia Adams), CarolD’Onofrio, Linda Emanuel, Bruce Jennings, Hilde Nel-son, True Ryndes, Jack Stanley, and Daniel Sulmasy dis-cuss in more detail several key issues that surfaced duringthe course of our deliberations but could only be touchedon briefly in the project report. These thoughtful essaysalso 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 pro- ject participants, this supplement and the project on which it is based would not have been possible withoutthe extraordinary support and assistance of many people. We would like to thank, first, colleagues at The HastingsCenter for their contributions, encouragement, and sup-port. An equal measure of credit and gratitude should goto the members of the National Hospice Work Group.They have been more than good colleagues and collabora-tors throughout the project; they have been constructively critical friends who have kept us on track and kept usclose to the practical realities of care for the dying andtheir families. We are indebted, too, to the board andexecutive staff of the National Hospice and Palliative CareOrganization (NHPCO), especially former president andchief executive officer Karen Davie. Stephen Connor andChris Cody provided invaluable advice and technical assis-tance. The current president and chief executive officer of NHPCO, Donald Schumacher, was also an active mem-ber of the task force throughout the project in his capacity as president of the Center for Hospice and Palliative Carein Cheektowaga, New York. We thank Tammy Choateand her colleagues at Bondware for providing invaluable web-site support and services, which greatly facilitated the work of our project. We especially thank Ann O’Keefe of The Arthur Vin-ing Davis Foundations and Andrea Kydd of the NathanCummings Foundation for their unflagging vision,encouragement, and support.Finally, we gratefully acknowledge the many hours of hard work devoted to the project by our administrativeassistants, Donna Tipps of the San Diego Hospice andEllen McAvoy of The Hastings Center.
❧
The Project on Increasing Access to Hospice Care
T
ABLEOF
C
ONTENTS
The Project on Increasing Access to Hospice Careinside front cover
Access to Hospice Care: Expanding Boundaries, Overcoming Barriers3
by Bruce Jennings, True Ryndes,Carol D’Onofrio, and Mary Ann Baily
I. What is Hospice Care?6II. The Ethical Imperative for Access to Hospice Care13III. Barriers Impeding Access27IV. Race, Ethnicity, and Culture39V. Toward New Models for Hospice44VI. Approaching Just Access: Recommendations53Caregiving at the End of Life8
by Stephen Connor and Jocelia Adams
Healthcare Justice and Hospice Care14
by Daniel P. Sulmasy
Pictures of Persons and the Good of Hospice Care18
by Hilde Lindemann Nelson
What the People Would Want If They Knew More About It: A Case for the SocialMarketing of Hospice Care22
by John M. Stanley
Hospice and Alzheimer Disease: A Study in Access and Simple Justice24
by Bruce Jennings
The Relevance of Public Health in Improving Access to End of Life Care30
by Carol D’Onofrio and True Ryndes
Rediscovering Community at the Core of the Human Conditionand Social Covenant40
by Ira Byock
Is Discontinuity in Palliative Care a Culpable Act of Omission?45
by True Ryndes and Linda Emanuel
Hospice Access and Values Project Task Force Participants60Hospice Access and Values Project Task Force Members
inside back cover
Search History:
Result 00 of 00
00 results for result for
p.
Access to Hospice Care: Expanding Boundaries, Overcoming Barriers
This report looks at issues of social justice, access, and public policy in hospice and palliative care. As it examines the issues from the perspectives of social justice and fairness, it also recommends ways in which…
(More)
6.9K
Reads
10
Readcasts
2
Embed Views
More From This User
Notes
Load more
