The first step is to determine whether there is a need within your service population for palliative care. National trends and statistics suggest there is a growing need for palliative care services. While most Americans would prefer to die at home, about 75% of deaths occur in hospitals and nursing homes (Lynn, 1996), where many patients receive medically futile, expensive care. Meantime, hospice programs, widely recognized as effective in improving quality of life for dying patients, go underutilized in part because seriously ill patients associate their services with imminent death (GAO, 2000).
That an unprecedented number of health care institutions have launched palliative care programs in the past five years, that interest in these services continues to grow, that more than one in four of the nation's teaching hospitals now offer palliative care clinical and educational programs — all these recent developments suggest that the national trends are expressing a local phenomenon. Are there unmet needs for palliative care within your community and your institution? There are several ways you can find out:
At TriCentral, for example, we conducted in 1996 a small retrospective exploratory study at one medical center to determine whether, as we hypothesized, there were seriously ill patients who did not access end-of-life care through hospice, but still needed palliative care services. We searched the hospital data base for the number of deaths from cancer, heart disease, and lung disease in the previous year and the number of hospital days related to those deaths either on a general medicine/surgical unit or in the intensive care unit (ICU). We found that 63% of the patients who died in the ICU and 54% of those who died in acute medical beds had a primary or secondary diagnosis of one of three commonly fatal, incurable conditions: cancer, congestive health failure, or chronic obstructive pulmonary disease. Together, these patients accounted for more than 3,000 hospital days over 12 months. At the same time, our hospice program was underused, as terminally ill patients waited to enroll until they had exhausted all other options. Average survival time for hospice patients was 48 days from the time of enrollment. Twenty-six percent of these patients died within the first week of admission; another 35 percent died within the next three weeks.
These findings supported two conclusions: 1) many very seriously ill patients were not accessing supportive end-of-life care at home, and 2) their cost of care at the end of life was very high. The question occurred to us: Wouldn't some of these patients prefer a blend of curative and palliative care, most of it delivered at home (and at less expense), if it were available to them? In 1997, we launched a palliative care pilot project to evaluate this question.
For more information about the TriCentral Palliative Care Toolkit visit www.growthhouse.org/palliative/. All content is Copyright © 2002, 2003 by Richard D. Brumley, M.D. All rights reserved. No part of this toolkit may be reproduced, stored in a retrieval system, or transmitted in any form or by any means, electronic, mechanical, photocopying, recording or otherwise, without written permission from the publishers. This guide to developing home-based outpatient palliative care services was developed through a grant to the Kaiser Permanente TriCentral Service Area from The Project on Death In America. The Kaiser Permanente TriCentral Palliative Care Program is a Sustaining Member of the Inter-Institutional Collaborating Network On End-of-life Care (IICN) which links major organizations internationally.
