There is no doubt that Americans are frustrated with traditional models of end-of-life care. Frustrated and deeply conflicted, as evidenced by two polar-opposite patient-care movements in recent years. One has been the movement led by some patient advocates to legalize physician-assisted suicide as a means of ending the suffering of terminally ill patients. This movement, which in 1994 led to a voter-approved initiative in Oregon that legalized physician-assisted suicide under certain conditions, offers an extreme solution to a widespread problem of pain control and individual choice. Gone are the days — only a few generations ago — when Grandma lingered in the back bedroom under the watchful care of the family doctor and took her final departure surrounded by family members and close friends.
Although most Americans still prefer to die at home, about 75% of deaths occur in hospitals and nursing homes (Lynn, 1996). Indeed, most terminally ill Americans experience what has been called an "Invisible Death" (Nuland, 1995). Sequestered in healthcare institutions, they spend their last days — sometimes their last weeks and months — isolated from family and friends, under the care of medical strangers who have had little or no instruction in the "art of dying." For many of the dying, quality of life is sacrificed as they undergo "heroic" treatments that too often are medically futile and inappropriate, not to mention expensive. An estimated 10% to 12% of our nation's total health care costs each year are spent on end-of-life care (Scitovsky, 1994; Emanuel & Emanuel, 1994). "There is abundant evidence," write physicians Meier and Morrison, "that the quality of life during the dying process is often poor, characterized by inadequately treated physical distress, fragmented care systems, poor to absent communication between doctors and patients and families, and enormous strains on family caregiver and support systems (1999:6)." These outcomes are in large part a result of our recent healthcare revolution, which has given rise to high-tech treatments that can extend life but also prolong dying, leaving some desperate souls to wonder "When is enough enough?"
The opposite movement has not been political in nature but rather represents a shift in patient use of hospice care. Medicare introduced the hospice program in 1983 as an optional benefit for achieving a "good death" that substitutes "high-touch" for high tech. Widely recognized as effective in improving quality of life for terminally ill patients, hospice programs provide a range of services to control pain and provide comfort care, primarily to individuals in their own homes. In the past decade, the number of Medicare patients receiving hospice care has more than doubled. Today, about 20 percent of patients who die in the United States receive hospice care. But average lengths of stay in hospice have been dropping, from 64 days in 1992 to 48 days in 1999 (NHO, 2000). Twenty-eight percent of Medicare patients in the hospice program receive hospice care for one week or less (GAO 2000). One reason for this shift in hospice use is patient unwillingness to forego curative care—and to abandon hope despite a poor prognosis. The Medicare hospice program pays for medical procedures necessary for pain control and other symptom management, but not those aimed at curing the patient. As a result, many seriously ill patients resist the program because "it shuns treatment and is a strong marker for imminent death (The Center to Improve Care of the Dying, 2000)." Healthcare officials speculate that with the development of new treatment options for life-threatening conditions, terminally ill patients are waiting to enroll in hospice programs until after they have exhausted all other alternatives (GAO, 2000). As one healthcare observer put it, "They are simply unwilling to promise to die on schedule."
This see-sawing between medically inappropriate care and too little care has prompted calls for change and for blended models of care that view "relief of suffering and cure of disease...as twin obligations of a medical profession that is truly dedicated to patient care (Cassell, 1982)." One such blended model—and the basis for this toolkit—is Kaiser Permanente's TriCentral Palliative Care Program.
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.
