C
Examples of Initiatives to Improve
Care at the End of Life*
This appendix illustrates the variety of initiatives being undertaken to improve end-of-life care. It is not intended to be comprehensive, and inclusion does not imply endorsement by the Institute of Medicine. A more extensive database is being developed by Americans for Better Care of the Dying (202-530-9864) and will be used to facilitate further collaborations and sharing of information. Information for this resource will be appreciated. Initiatives are listed alphabetically by organization.
Alliance for Aging Research
Health Care Costs of the Elderly, Terminally Ill
Contact: Daniel Perry, Executive Director
2021 K Street, NW, Suite 305
Washington, DC 20006
202-293-2856
Research reveals that physician and hospital costs for people in their 80s and 90s are lower than for younger groups. Aggressive technological interventions are more likely to go to people with good functional status and prospects for recovery rather than to older terminally ill people. Despite such scientific evidence, the view of the elderly, terminally ill patient consuming large amounts of resources shortly before he or she dies still pervades our national consciousness. The alliance has examined that view in a recently released study entitled Seven Deadly Myths: Uncovering the Facts about the High Cost of the Last Year of Life. This document provides up-to-date data on health care costs during the last year of life in the very old. The study provides an analysis of the most current literature and scientific data available on the topic.
American Academy of Hospice and Palliative Medicine (AAHPM)
and American Board of Hospice and Palliative Medicine (ABHPM)
Physician Hospice/Palliative Care Training
Contact: Dale Smith, Executive Director
PO. Box 14288
Gainesville, Florida 32604-2288
352-377-8900
The long-term objective of the AAHPM's physician training project is to improve the care of patients with active, progressive, far advanced disease for whom the prognosis is limited and the focus of care is on improving quality of life. To improve the care of terminally ill patients, the Academy is developing a 20-hour curriculum entitled Physician Hospice/Palliative Care Training that promotes physician competence in end-of-life care. The curriculum consists of a series of integrated, clinically-oriented, self-contained, self-instructional modules called UNIPACs that apply adult learning theories and practices to end-of-life care. Each of the approximately 100-page modules follows the recommended format for self-instructional learning and includes behavioral objectives, a pretest, reading material, problems commonly encountered in end-of-life care and suggested interventions, clinical situations for demonstrating knowledge application, a posttest, and references. Several of the UNIPACs also include detachable reference tables that address topics such as oral morphine equivalents, suggested adjuvant drug dosages, causes and treatments for dysphagia and dyspnea, pharmacological treatments for the pain, nausea, and constipation associated with bowel obstruction, and depression assessments.
The UNIPACs are designed for use by practicing physicians, by medical students and residents in academic centers of medicine, and by hospice/palliative care programs that offer clinical rotations for physicians in training. The curriculum focuses on many of the fundamental elements of end-of-life care identified by the Institute of Medicine, including: 1) effective techniques for assessing and controlling pain and other distressing symptoms, 2) alleviating death-related psychological and spiritual distress, assessing and managing complicated grief reactions, 4) communicating effectively with patients and family members, 5) making ethical decisions, 6) participating on interdisciplinary teams, and 7) cultivating empathy and sensitivity to religious, ethnic, and other differences. The UNIPACs are as follows: 1) The Hospice/Palliative Approach to Caring for the Terminally Ill; 2) Alleviating Psychological and Spiritual Pain in the Terminally Ill; 3) Assessment and Treatment of Pain in the Terminally Ill; 4) Management of Selected Nonpain Symptoms in the Terminally Ill; 5) Caring for the Terminally Ill: Communication and the Interdisciplinary Team Approach; and 6) Ethical and Legal Decision Making When Caring for the Terminally Ill.
The ABHPM has developed a palliative care certification program that includes requirements for licensure, medical specialty certification, clinical and interdisciplinary care experience, and active care of at least 50 terminally ill patients in the last three years. The first certification examination was offered in November 1996.
American Board of Internal Medicine
Project to Improve End-of-Life Patient Care
Contact: Linda Blank
Vice President for Clinical Competence and Communications
American Board of Internal Medicine
510 Walnut Street, Suite 1700
Philadelphia, PA 19106-3699
(215) 446-3500
www.abim.org
In October 1993, the American Board of Internal Medicine (ABIM) began a special project dedicated to improving end-of-life patient care. The fundamental goals of this project were to identify and promote physician competency in the care of dying patients during internal medicine residency and subspecialty fellowship training. Internal medicine program directors were informed about the project and were invited to contribute examples of curricula, conference topics, and educational and experiential activities organized around the care of dying patients and support of family. National meetings and projects of health-related organizations continue to provide a forum for learning from and talking to audiences of physicians, patients, health care professionals, and medical educators. These have included the Association of American Medical Colleges (AAMC), American College of Physicians (ACP), Association of Professors of Medicine (APM), Association of Program Directors in Internal Medicine (APDIM), Clerkship Directors in Internal Medicine (CDIM), International Congress on Palliative Care, and Residency Review Committee for Internal Medicine (RRC-IM).
The ABIM End-of-Life Patient Care Project has created several products including Caring for the Dying: Identification and Promotion of Physician Competency—Educational Resource Document, which was developed primarily for program directors and faculty in residency and subspecialty training programs. The companion volume of Personal Narratives presents personal stories contributed by physicians that illustrate the special and rewarding connection between doctor and patient in life and in death. Independently developed films, On the Edge of Being...When Doctors Confront Cancer and Notes from the Edge, Diary of Peter Morgan, MD, created and produced by Ruth Yorkin Drazen, are also provided by ABIM at no cost. Over 30,000 copies of the resource documents have been distributed to training programs, hospices, and nursing homes and at national meetings of various medical organizations. Other products of the project include a set of educational objectives, slide packet, and collection of reprints—all designed for use in educational programs. In addition, a self-assessment survey of internal medicine residents was developed and piloted in 60 representative training programs training over 1600 residents from June 1995 to June 1997 to seek their perceptions. The directors of these programs have also been surveyed. These surveys establish a starting point from which to monitor the project's impact.
Among other steps, the ABIM is encouraging continued development of test items on end-of-life patient care for use on ABIM certification and recertification examinations, the ACP/APM/APDIM in-training examination, and the ACP medical knowledge self-assessment programs. It is also encouraging the American Board of Medical Specialties member boards to include test items on end-of-life patient care on their certification and recertification examinations.
American Medical Association
Program to Train Physicians in End-of-Life Care
Contact: Linda Emanuel, M.D.
Vice President for Ethics Standards
American Medical Association
515 North State Street
Chicago, IL 60610
312-464-5619
www.ama-assn.org
This is a major, profession-wide educational program on how to provide quality advance care planning and comprehensive palliative care. The program combines a top-down approach and a professional grass roots model. The top-down approach provides education at national and regional conferences and workshops and is intended to directly reach about 10 percent of all United States physicians, most of whom will be leaders and role models in their medical communities. To reach the roots of the profession, the program disseminates specially developed continuing medical education materials to all direct patient-care physicians in the United States. This program, along with parallel activities already under way at the AMA, will secure endorsement for end-of-life care skills among the leaders and role models in medicine.
This program seeks to educate physicians throughout the country in the practicalities of discussion and completing advance care planning, and in the goals and interdisciplinary clinical skills of palliative care. The program is intended also to promote endorsement of these skills by the leadership and general culture of medicine. The Advance Care Planning activities provide training in practical skills, including role play as well as instruction.
The philosophy of this intervention is that every physician should be able to recognize palliative care needs and either provide them personally, or secure help from an appropriate colleague. Evaluation of the program will occur at predetermined stages. At each step, data will be analyzed, interpreted, and used in a continuous quality improvement approach to insure maximal efficacy of the intervention.
A follow-through program will be designed to consolidate and sustain the intervention effects. It will involve the establishment of a network of centers of expertise that will continue to create the core group of experts who will be the role models and educators of the future. These centers will provide medical school, residency, and fellowship training within integrated programs at health care delivery sites.
Association of Academic Medical Centers
Education of Physicians about Dying
Contact: R. Knight Steel, M.D.
Hackensack University Medical Center
30 Prospect
Hackensack, NJ 07601
201-996-2503
Despite the changing nature of disease, from acute to chronic, and the aging of the population, much of medicine continues to focus on the three-step sequence of diagnosis, treatment, and cure. Often the medical educational process fosters an attitude of disinterest in managing the care of those who may not be appropriate candidates for "aggressive" intervention. To influence educational policy on the issue of dying, the project will review (1) the requirements of the residency review committees of internal medicine and family practice; (2) the examinations of the primary boards of internal medicine and family practice; and (3) the requirements and examinations for the subspecialties of geriatrics, oncology, and cardiology. The review will determine the extent to which these examinations and training programs are directed to care of the dying, control of pain, and advance directives.
Barnard College
Cross-Cultural Dimensions of Death and Mourning in Relation to
Organ Donation
Contact: Lesley A. Sharp, Ph.D.
Barnard College
Columbia University
3009 Broadway
New York, NY 10027-6598
212-854-5428
This project is an anthropological investigation into the cross-cultural dimensions of death and mourning, and their specific relevance to professional versus lay attitudes in the context of organ donation and procurement in urban Manhattan. Preliminary research reveals that the donation process alters grieving and may, in fact, prolong and even intensify the period of grief and mourning. The final objective of the anthropological findings of this project will be to suggest future policies and training guidelines for procurement professionals.
Baystate Medical Center
Dialysis Discontinuation: The Decision to Die and the Quality of Dying
Contact: Lewis M. Cohen, M.D.
759 Chestnut Street
Springfield, MA 01199
413-784-3376
A bioethical, psychiatric, and clinical study of the decision by patients to terminate life-sustaining kidney dialysis treatment. Approximately 75 patients with end-stage kidney disease will be observed, interviewed, and evaluated to explore their decisionmaking processes and to examine their quality of death. In a smaller pilot study, Dr. Cohen found that patients and their families usually made the decision to stop treatment because of progressive deterioration, often sought spiritual counseling in making the decision, did not view the decision as being a suicidal act, and did not appear to be unduly influenced by psychiatric disorders such as depression. Seven of 11 patients were judged to have had a "good" death, dying shortly after stopping dialysis without evident physical or psychological suffering.
Colorado Collective for Medical Decisions, Inc.
Contact: Susan Fox Buchanan, J.D.
Executive Director, CCMD
777 Grant Street, Suite 206
Denver, CO 80203
303-832-3002
The Colorado Collective for Medical Decisions (CCMD) is a nonprofit organization and tax-exempt public charity comprised of health care professionals and lay citizens. Its mission is to create clinically sound, community-based guidelines for appropriate end-of-life medical treatment. Draft guidelines are currently being presented to a broad variety of public groups and medical providers in community workshops, clinic interviews, public forums, telephone surveys, and questionnaires. These include recommendations on appropriate end-of-life care, comfort care, shared decision making, cardiopulmonary resuscitation, permanent vegetative state, end-stage dementia, tube feeding, and dialysis.
As a separate phase, CCMD is developing a pilot project to improve medical decisionmaking for patients who are critically ill, permanently unconscious, or debilitated by a progressive and ultimately fatal disease with death expected within one year. The project offers involved parties access to a medical advisory panel, coupled with mediation, as a supplement to existing case conferences and ethics committees. The goal of this project is to contribute to an evolving climate of non-adversarial communication and constructive participation among patients, providers, case managers, and payers. It hopes to minimize poor communication, litigation, and media exposure that can drain and polarize parties.
The pilot project offers two phases to supplement existing ethics committees: mediation and medical review panels. Mediation facilitates non-adversarial communication and resolution among the parties to a conflicted case while the medical review panel makes neutral, non-binding clinical information available to all parties. Innovative aspects of the CCMD pilot project include
• clinical review panels constituted as needed from practitioners in fields of practice unique to each case; there is a pool of variously credentialed physicians rather than a single standing review panel.
• clinical review panels and mediation providing advisory information and facilitated dialogue, not binding administrative decisionmaking; and
• utilization review, case management, and insurance coverage issues introduced in a controlled, neutral environment that is intended to bring resource considerations, as well as clinical information, into decisionmaking.
Dartmouth College
Multi-Method Research to Understand the Experience of Dying
in Seriously Ill Adults
Contact: Marguerite M. Stevens, Ph.D.
Associate Professor
Community and Family Medicine
Dartmouth College
7927 Strasenburgh
Hanover, NH 03755
603-650-1538
A multi-method, cross-disciplinary analysis will be developed to understand more about the dying experience of seriously ill adults through analyzing patient and family reports of severe pain and developing descriptive models of "good" and "bad" dying experiences from the viewpoints of the patient and family. Some of the uniquely detailed database and innovative methods to be used will be from an already successfully developed pain intervention database titled, "the Study to Understand Prognoses and Outcomes of Risks of Treatments" (SUPPORT). This database consists of an innovative method of integrating and summarizing findings via the use of interview, narrative, and quantitative data. One hundred thirty two cases will be studied.
Edmonton General Hospital
An Integrated Multidimensional Tool Kit for the Assessment of
Terminal Cancer Patients and Their Families
Contact: Eduardo Bruera, M.D.
Palliative Care Program
Grey Nuns Community Health Centre
1100 Youville Drive West, Room 4324
Edmonton, Alberta, T6L 5X8 Canada
403-450-7730
The project will develop a simple, multidimensional kit for the daily or weekly evaluation and follow-up of terminally ill cancer patients and their families. The key component of the kit is an assessment tool for patients to describe their physical and psychological symptoms, cognitive function, spiritual needs, and family support. The tool will enable the health care provider to be aware of these symptoms together with the patient's other vital signs. The design of the kit lends itself to use in the acute, long-term care, home health, or hospice setting.
Episcopal Diocese of Washington
Committee on Medical Ethics
Contact: Cynthia B. Cohen, Ph.D., J.D., Chair
Committee on Medical Ethics
PO Box 569
Garrett Park, MD 20896
301-942-6077
In the Diocese's project Are Assisted Suicide and Euthanasia Morally Acceptable for Christians?: Perspectives to Consider, the Committee on Medical Ethics "addresses the issue of assisted suicide/euthanasia as part of a larger report they are developing entitled, Toward a Good Christian Death. They believe that an adequate examination of the morality of assisted suicide and euthanasia requires exploring a whole set of moral and social questions about appropriate and compassionate care near the end of life."
Science has brought tremendous force to bear on the lengthening of life by all possible means in the form of technological advancement. This sometimes leads to a lingering and painful death for loved ones, which has prompted forceful debate about the acceptability of assisted suicide and euthanasia. In this document, the Episcopal Diocese has attempted to provide guidance to its members on the place of these concerns in end-of-life decisionmaking within the boundaries of the Christian faith.
The document examines contemporary factors which have brought the issues of assisted suicide and euthanasia to the forefront of end-of-life discussion. It defines for its constituency the key terms of the debate and discusses the distinction between assisted suicide and euthanasia as well as that between providing adequate pain relief to the dying and assisted suicide/euthanasia. Concluding arguments explore the current debate in detail.
The Fred Friendly Seminar
Before I Die: Medical Care and Personal Choices
Contact: Barbara Margolis
Seminars, Inc. - WNET
356 W. 58th St., Room C1035
New York, NY 10019
212-560-4944
www.wnet.org/bid
The Fred Friendly Seminars are an ongoing series of public TV programs exploring important contemporary issues. Invited experts and other panelists engage in a Socratic dialogue to "confront what they would do in complicated situations where the 'right' choice is not clear." In April 1997, Before I Die: Medical Care and Personal Choices, funded by the Robert Wood Johnson Foundation, was broadcast nationally. The program's panel of guests confronts a series of hypothetical scenarios dealing with problems of patients and families as they face serious illness, dying, and death. It aimed to illustrate the difficulties of decisionmaking in the context of the current cultural and medical environment.
Concerns addressed in the broadcast included
• whether patients and families expect too much of their physicians;
• how the high financial costs of dying burden patients and their families;
• whether all Americans should be required to clearly state their wishes regarding end-of-life care;
• whether pain at the end of life is necessary and can be alleviated;
• whether medical training related to end of life can be improved;
• why physicians treat patients with aggressive care, despite wishes to the contrary; and
• whether spirituality can be better brought into the dying process.
Videocassettes of the program are available (PBS Video at 1-800-424-7963) along with a companion viewer's guide that includes discussion questions, essays, information about advance planning. A website (www.wnet.org/bid) is intended to encourage ongoing education and dialogue.
Georgetown University St. Francis Center
The School-Based Mourning Group Project: A New Approach
to Assisting Bereaved Inner-City Youth
Contact: Janice L. Krupnick, Ph.D.
The Georgetown University School of Medicine
Department of Psychiatry
3800 Reservoir Road, NW
Washington, DC 20007
202-687-1496
The aim of this program is to further develop, evaluate, and disseminate new service delivery programs involving therapies and techniques for further expression of pain and loss for bereaved school-age children in low-income, inner-city public schools who have experienced the death of a parent/parents due to violence, substance abuse, and, increasingly, HIV infection and AIDS.
The George Washington University Center to Improve Care of the Dying
Contact: Joanne Lynn, M.D., Director
1001 22nd Street, NW, Suite 820
Washington, DC 20037
202-467-2222
www.gwu.edu/~cicd
The Center to Improve Care of the Dying is an interdisciplinary organization engaging in research, advocacy, and education to improve the care of dying patients and those suffering with severely disabling diseases. Center staff encourage the development and realignment of health care funding to engender effective care. The center continues to address spiritual issues and the development of measures of quality of end-of-life services in health care. It was founded on the belief that life under the shadow of death can be rewarding, comfortable, and meaningful for almost all persons—but achieving that goal requires real change in the care system.
For the American Geriatric Society, CICD prepared an amicus brief for U.S. Supreme Court hearings on physician assisted suicide. The brief opposed constitutional recognition of a right to such assistance. The center has also described dying and decisionmaking in seriously ill adults, developed measurement tools for assessing quality of care and to foster development of accountability in care services, and carried out a project to evaluate the treatment of the dying process in medical textbooks.
CICD staff are developing a proposal called MediCaring. This project extends the concept of hospice to include a broader population of terminally ill individuals than that which currently benefits from the Medicare hospice program. CICD is responding to a need for comprehensive, supportive, community-based services that meet personal and medical needs, enhance the prioritization of patient autonomy and preferences, provide good symptom management, and ensure family counseling and support. Among other things, MediCaring will define financing strategies, recognize the family's role, and identify appropriate limits on medical interventions.
Effective reform will arise from an understanding of how our care system now responds to persons who are dying and from the educated design of improved processes and systems.
City of Hope National Medical Center
HOPE: Homecare Outreach for Palliative Care Education
Contact: Betty R. Ferrell, Ph.D., F.A.A.N.
Associate Research Scientist
City of Hope National Medical Center
1500 E. Duarte Road
Duarte, CA 91010-3000
818-359-8111
This is a pilot demonstration to improve the quality of care for patients and families in non-hospice home care agencies through design, implementation, and evaluation of a model education program. The objective is a model program that can be disseminated widely through home care agencies to improve care for terminally ill patients and families. Over two years, a curriculum will be developed to test in five home care agencies that represent various models of home care delivery and provide care to culturally diverse populations.
Institute for Healthcare Improvement
Breakthrough Series Collaboration on Improving Care at the End of Life
Contact: Penny Carver
Institute for Healthcare Improvement
135 Francis Street
Boston, MA 02215
617-754-4800
Approximately forty health care organizations will be selected to work intensively for 12 months to implement the best available ideas for change and improvement in end-of-life care. The goal will be to achieve rapid, breakthrough change: significant improvement in comfort and satisfaction with reductions in the use of unwanted, non-beneficial, and other wasteful care. IHI will provide process improvement and other information, coaching, and communication strategies. Organizations will provide implementation teams and resource support as well as evaluation and sharing of details of change processes and results.
Areas for improvement include using palliative/supportive care; improving pain management; meeting the needs of families; improving communication among family and health professionals; reducing transitions at the end of life; decisionmaking about treatments; making advance planning work; identifying non-beneficial care; overcoming administrative/legal barriers to optimal care; educating and supporting professionals; promoting multidisciplinary care; and increasing community support for end-of-life care.
Johns Hopkins University
A Problem Solving Approach to Helping Families Care for the
Dying Person with Cancer
Contact: Matthew Loscalzo, M.S.W., Director
Oncology Social Work
Johns Hopkins Oncology Center
600 North Wolfe Street
Baltimore, MD 21287
410-955-5668
People who die of cancer and other chronic diseases receive most of their care, during the period just prior to death, from family members who are often unprepared and unskilled in dealing with the complex and demanding tasks they face. This project will develop a program to better prepare family members for caregiving responsibilities. Family caregivers will receive problem solving education, information for solving caregiving problems, and continuing support for their problem solving efforts from health professionals and peers.
Marquette University
Fostering Humane Care of Dying Persons in Nursing Homes
Contact: Sarah A. Wilson, Ph.D., R.N.
PO Box 1881, Clark Hall 319
Milwaukee, WI 53201-1881
414-288-3812
This project will develop an educational program for staff and administrators aimed at improving the care of the dying in nursing homes (long-term care facilities). A qualitative research program will be pursued to identify the difficulties in providing humane care to dying residents in long-term care facilities. The qualitative research will include focus groups consisting of staff and administrators as well as interviews with the family members of recently deceased nursing home residents.
Medicare Rights Center
Initiative for the Terminally Ill on Medicare
Contact: Mary Ann Etiebet, Education Director
Diane Archer, Executive Director
Medicare Beneficiaries Defense Fund
1460 Broadway, 8th Floor
New York, NY 10036-7393
212-869-3850
Lack of information about financing options for end-of-life care is a substantial barrier to quality care at the end of life. This initiative will educate consumers, their families, caregivers, professional counselors, and clinicians about Medicare hospice and home health care benefits for the terminally ill in both fee-for-service and HMO settings. The initiative will include an aggressive public relations campaign and consumer guide.
Missoula Demonstration Project, Inc.
The Quality of Life's End
Contact: Ira Byock, M.D., President
Missoula Demonstration Project, Inc.
1901 South Higgins Avenue
Missoula, MT 59801
406-728-1613
This is a long-term, community-based organization which was created to study and transform the culture and experience of dying, wherein research will be done to define the attitudes, expectations, and experiences related to death and dying in Missoula County, Montana. The results will provide the platform for future interventions and research in the next 15 years focused on bringing quality to life's end.
Mount Sinai Medical Center
National Committee on Financing Care at the End of Life
Contact: Christine K. Cassel, M.D.
Professor and Chairman, Geriatrics and Adult Development
Mount Sinai School of Medicine
Box 1070, One Gustave L. Levy Place
New York, NY 10029
212-355-8400
This program, designed as a task force project, is to create a Diagnosis Related Group (DRG) for payment for terminal care services delivered to hospitalized patients and all palliative care. This new code will validate and legitimize the practice of palliative medicine by hospital professionals on behalf of their dying patients, since a reimbursed activity is much more likely to be viewed as an appropriate function for doctors and hospitals.
The National Hospice Organization
Medical Guidelines for Determining Prognosis in Selected
Non-Cancer Diseases
Contact: Chris Cody
The National Hospice Organization
1901 North Moore Street, Suite 901
Arlington, VA 22209
703-294-4421
www.nho.org
The NHO Standards and Accreditation Committee Medical Guidelines Task Force has developed this document as a guideline for hospice care or for Medicare/Medicaid hospice benefit eligibility for non-cancer patients. Based on medical criteria, the guidelines are designed to aid in identification of patients with a likely survival prognosis of six to twelve months.
General guidelines for determining life expectancy relate to clinical progression of the disease, nutritional status, and patient and family circumstances. In addition, specific criteria are included for heart and pulmonary disease and dementia.
National Prison Hospice Association
Development of Hospice Care in Correctional Facilities
Contact: Elizabeth Craig
PO Box 941
Boulder, CO 80306-0941
303-666-9638
www.npha.org
NPH provides information to correctional facility professionals on good yet cost-effective care of dying patients. In order to get the message out about the importance of providing compassionate care to dying individuals, NPH produces informational literature, makes presentations, does site visits, promotes inmate volunteer training, and advises in the development of prison hospice programs to promote hospice and similar palliative care programs in local, state, and federal correctional facilities across the country. The promotion effort includes the development of inmate-staffed hospice volunteer programs, development of national prison hospice guidelines, and the creation of a national network for the exchange of information between hospices and prisons.
The Neurologic Institute at Columbia-Presbyterian Medical Center
Palliative Care Decisionmaking and Outcomes in Amyotrophic
Lateral Sclerosis
Contact: Lewis P. Rowland, M.D.
Peregrine L. Murphy, M.Div.
Dale Lange, M.D.
Columbia-Presbyterian Medical Center
710 W. 168th Street, #1311
New York, NY 10032-2603
212-305-8551
This project is a longitudinal investigation of the patterns of palliative care in patients with amyotrophic lateral sclerosis (ALS, also known as Lou Gehrig's disease) from diagnosis to death. ALS is an inexorably progressive disease, for which there is no cure. The investigation will examine the relationship between physicians' preferences for and attitudes toward life-sustaining treatment, patients' responses to the options offered, and the medical outcomes. Physicians' attitudes and practices regarding palliative treatment may determine whether patients receive appropriate palliative support and care throughout the course of their illness.
Open Society Institute
Project on Death in America
Contact: Julie A. McCrady
Project Officer
Open Society Institute/PDIA
888 Seventh Avenue
New York, NY 10106
212-887-0150
www.soros.org/death.html
The Faculty Scholars Program
The Faculty Scholars Program of the Project on Death in America supports outstanding clinicians, educators, and researchers in disseminating existing models of good care, developing new models for improving the care of the dying, and creating new approaches to the education of health professionals. One of the goals of the scholars program is to promote the visibility and prestige of clinicians committed to this area of medicine and to enhance their effectiveness as academic leaders, role models, and mentors for future generations of health professionals.
From its inception in July 1994 to the present, the program funded 32 PDIA and six Open Society Institute Soros Faculty Scholars, representing 23 medical schools out of 125 in the United States and 16 in Canada. The awards of $70,000 a year provide scholars with up to three years of support for 60 percent of their time on activities to improve professional practices and education related to end-of-life and bereavement issues.
An illustrative list of scholars and their work follows.
Harvey Max Chochinov, M.D., F.R.C.P.C.
Manitoba Cancer Treatment and Research Foundation, University
of Manitoba, Winnipeg, Manitoba
Timothy J. Keay, M.D., M.A.—Th., C.A.Q.G.M., F.A.A.F.P.
University of Maryland School of Medicine, Baltimore, Maryland
David R. Kuhl, M.D.
University of British Columbia, Palliative Care Program, St. Paul's
Hospital, Vancouver, British Columbia
Marcia Levetown, M.D.
University of Texas Medical Branch at Galveston, Galveston, TX
Michael Lipson, Ph.D.
Columbia College of Physicians and Surgeons and Harlem Hospital,
New York, NY
Susan J. McGarrity, M.D.
Penn. State University Hospital, Milton S. Hershey Medical
Center, Hershey, PA
Walter M. Robinson, M.D., M.P.H.
Harvard Medical School and Children's Hospital, Boston, MA
John Lee Shuster, Jr., M.D.
University of Alabama School of Medicine, University of Alabama at
Birmingham, Birmingham, AL
Daniel P. Sulmasy, O.F.M., M.D., Ph.D.
Georgetown University Medical Center, Washington, D.C.
Sharon M. Weinstein, M.D.
University of Texas M.D. Anderson Cancer Center, Houston, TX
Grants Program
To date, the Grants Program of the Project on Death in America has supported 81 innovative approaches to understanding and changing the process of dying and bereavement. Grants have been disbursed in the following areas:
• the physical, emotional, spiritual, and existential components in dying and bereavement
• the contribution of the arts and humanities
• new service delivery models for the dying and their family and friends
• educational programs for the public about death and dying
• educational programs for the health care professions
• the shaping of governmental and institutional policy
Oregon Health Sciences University Center for Ethics in Health Care
Research on End-of-Life Care in Oregon
Contact: Susan W. Tolle, M.D.
Virginia P. Tilden, R.N., D.N.Sc.
Oregon Health Sciences University
3181 SW Sam Jackson Park Rd., L101
Portland, OR 97201-3098
503-494-4466
This study compares end-of-life care in the three major settings where death occurs in Oregon: acute care hospital, nursing homes, and home hospice. Using death certificates of recently deceased adults, the study will contact families and providers and collect data on the following key variables related to the patients and their deaths: (l) advance directives; (2) the extent to which deaths followed advance planning; (3) access to hospice; (4) preference for location of death versus location of actual death; (5) degree of pain and suffering versus effectiveness of comfort care efforts; (6) decisionmaking about level of aggressiveness of treatment; (7) family satisfaction with care and identification of problems; and (8) provider identification of barriers to compassionate care.
The Center is also a locus of continuing medical education activities for the State of Oregon and convened the statewide Task Force to Improve the Care of Terminally Ill Oregonians described later in this appendix.
The Park Ridge Center
Retrieving Spiritual Traditions in End-of-Life Care
Contact: Laurence J. O'Connell, Ph.D., S.T.D.
211 E. Ontario St., Suite 800
Chicago, IL 60611-3215
312-266-2222
This education program is being developed to foster the establishment of structured, supportive environments in which individuals and faith-based communities can draw upon, revitalize, and expand the spiritual and practical resources offered by their religious and cultural traditions for understanding and facing death and dying. The lay ministry program will give participants an opportunity to provide and revitalize spiritual, emotional, and practical support to the dying and their families.
The Pennsylvania State University College of Medicine
McGill University Palliative Care Program
Case Narratives in Palliative Care
Contact: David Barnard, Ph.D.
Anna Towers, M.D.
P.O. Box 850
Hershey, PA 17033-0850
717-531-8779
dxb12@psu.edu
The objective is to construct a set of case narratives in palliative care that describe the experiences of dying patients, their families, and health care providers as they interact with each other over the course of the patient's illness and treatment by the palliative care team. The emphasis in each narrative will be the patient's "inner life" or subjective experience and the caregivers' experiences of giving care. The narratives will depict how patients, families, and providers find personal meaning in illness and how personal meanings influence the experience and outcome of care.
Robert Woods Johnson Foundation
Last Acts
Contact: Victoria Weisfeld, M.P.H.
The Robert Wood Johnson Foundation
College Road East
P.O. Box 2316
Princeton, NJ 08543-2316
609-452-8701
www.lastacts.org
Responding to distressing findings from SUPPORT, the largest clinical study ever conducted with dying patients, a coalition of 72 prominent organizations was initiated to improve the quality of care for dying patients in the United States. Former First Lady Rosalynn Carter is the Honorary Chair of Last Acts, a collaboration initially supported by a grant from the Robert Wood Johnson Foundation. The coalition will seek specific reforms aimed at altering the behavior of physicians and other health care providers, payers of care, hospitals and nursing homes, and consumers themselves.
The project began in March l996 with a conference bringing together leaders from both consumer and health care organizations to explore issues raised by the current end-of-life care system. An outgrowth of this meeting was the formation of six Last Acts Task Forces: The Family, Financing, Workplace, Service Provider, Provider Education, and Palliative Care. Each task force will approach care of the dying from a different perspective. Supporting the task forces are five resource committees covering spirituality, evaluation and outcomes, diversity, standards and guidelines, and communications. The Task Forces will report on their progress at the second Last Acts conference to be held on October 30, 1997.
Sacramento Health Care Decisions
ECHO (Extreme Care, Humane Options)
Contact: Marjorie Ginsberg, Project Director
ECHO
4747 Engle Road
Carmichael, CA 95608
916-484-2485
Community Recommendations for Appropriate, Humane Medical Care for Dying of Irreversibly Ill Patients proposes goals and strategies to be adopted by acute care facilities and providers in northern California's health care system. The document resulted from a multi-year inter-organizational project called Extreme Care, Humane Options (ECHO) under the direction of Sacramento Healthcare Decisions (SHD), a nonprofit, nonpartisan community organization. It is based on the work of multidisciplinary committees composed of local physicians and other health care professionals, and the views and values of local citizens.
The recommendations are predicated on five underlying principles. In summary:
• When cure is no longer possible and death is imminent or a profoundly diminished condition unacceptable to the patient is expected, health care professionals should not recommend procedures that increase patients' pain and suffering.
• The treatment provided by the health care team for those terminally or profoundly, irreversibly ill must be purposefully and conscientiously aimed at meeting the patients' physical, psychological, social, spiritual, and emotional needs in an environment of caring and support.
• The goal of treatment should be improvement of the patient's prognosis, comfort, well-being, or general state of health or maintenance at a level of functioning that constitutes a quality of life satisfactory to the patient. This includes not creating unrealistic expectations about the value of further interventions.
• Though the cost of treatment should not be the primary reason for precluding a treatment option, health care providers and consumers have a duty to be wise stewards of communal resources. Likewise, all must be aware of the financial burdens often borne by patients and families.
Five goals are identified for acute care facilities: develop treatment options responsive to the needs of dying or irreversibly ill patients and their families; identify patients at risk of inappropriate or unwanted medical treatment; improve communication among patients, families, physicians, other health care team members and health care settings to foster informed, timely and mutually satisfactory treatment decisions; assure that the patient/surrogate is the primary decisionmaker in choosing among appropriate treatment options; and support effective processes for preventing and resolving conflicts regarding treatment decisions that respect patient values and the professional integrity of health care providers.
Indicators for offering comfort care are outlined. For instance, comfort care must be an option in the event of persistent vegetative state, minimal cognitive function, irreversible and irreparable organ failure, imminent demise, and if the burdens to the patient of cure-oriented treatment are greater than the medical benefit to the patient.
Roles of other key health care providers are suggested. These include physicians, medical groups, long-term care settings, and health plans and payers. The guidelines identify key elements that could be incorporated into the policies and procedures of healthcare services to improve communication about treatment decisions.
St. Jude Children's Research Hospital
Deciding to End Curative or Life-Sustaining Efforts for Children
or Adolescents with Cancer
Contact: Pamela S. Hinds, Ph.D., R.N., C.S.
Wayne L. Furman, MD
332 North Lauderdale
Memphis, TN 38105
901-495-3679
pam.hinds@stjude.org
Many health care professionals desire to include the adolescent patient in end-of-life decisionmaking, yet they are reluctant to do so because of a fear that the child may lack sufficient understanding of his or her situation to participate competently. No research-based guidelines exist to help the physician resolve this dilemma. This study will define the factors that pediatric oncology patients, their parents, and health care providers consider when deciding to end curative treatment or life-sustaining efforts. It will also identify the actions of health care providers that contribute to the ability of parents to cope with the death of their child. Guidelines will be developed from the research findings.
Supportive Care of the Dying: A Coalition for Compassionate Care
Contact: Alicia Super, B.S.N., R.N.
Project Coordinator
4805 NE Glisan Street, 2E09
Portland, OR 97213
503-215-5053, or
Larry Plutko, Chairperson
206-464-3392
An interdisciplinary consortium from the Carondelet Health System, Catholic Health Association of the United States, Catholic Health Initiatives, Daughters of Charity National Health System, PeaceHealth, and Providence Health System committed to advancing supportive care and compassionate outreach to persons with life-threatening illness and their families and communities. With support and resources from Catholic health care leaders, administrators, and clinicians, the Supportive Care of the Dying: A Coalition for Compassionate Care (SCD:CCC) is developing comprehensive supportive care delivery models for adaptation to any and all communities in the United States. These models will, initially, be implemented in Catholic health care communities; thereafter, assistance will be offered for implementation within the broader community. It is estimated that this project will be completed in two to three years.
The model of comprehensive supportive care is founded on the moral values and social traditions of Catholic health care. Care of persons with life-threatening illness recognizes the last phase of life as rich and meaningful when multidimensional support for physical, psychosocial, and spiritual suffering are provided not only to the ill person but also to the person's family and the community in which they live. While the dying process is specifically addressed in the comprehensive supportive care model, early assessment and intervention are emphasized as key to achieving goals of relieving pain and minimizing suffering. To this end, the model extends it to non-traditional service areas and beyond the current restraints of hospice.
The initial product of the SCD:CCC is important research into the needs of persons with life-threatening illness, their families, and their communities. The Supportive Care Delivery Model is Catholic health care's compassionate response to this research. This comprehensive model is based upon the actual needs and perceptions of those individuals dealing with life-threatening illness rather than health care providers' assumptions about those needs.
In addition, SCD:CCC is producing the practice guidelines, leadership competency guidelines, educational programs, modules, and teams necessary for successful implementation of the model. All products of the committee shall be piloted in Catholic health systems in selected sites across the nation as determined by SCD:CCC. Products and implementation strategies will be monitored for quality throughout the process. Health care providers, persons with life-threatening illness, families, and community members are active participants in the project due to ongoing outreach from SCD:CCC for input and suggestions.
Task Force to Improve the Care of Terminally Ill Oregonians
Contact: Patrick M. Dunn, M.D.
Task Force Chair
Oregon Health Sciences University
3181 SW Sam Jackson Park Rd., L101
Portland, OR 97201-3098
503-494-4466
The task force was convened in January, 1995 by the Oregon Health Sciences University's Center for Ethics in Health Care. Members include state health care professional organizations, state governmental agencies involved in health care, and health systems from the Portland area.
The task force was not designed to develop public policy but rather to act as a resource for those who do. It can tell policy makers what the medical community is doing to improve care for the dying in areas such as pain control and physician-patient-family communication. It can suggest ways in which proposed legislation might help or hinder good care at the end of life. It can provide technical consultation on various aspects of end-of-life care. The task force takes a position of neutrality with respect to physician-assisted suicide.
The Task Force has published a booklet, The Final Months of Life: A Guide to Oregon Resources, that is being distributed to all primary care physicians in Oregon.
Task force organizational membership list:
Center for Ethics in Health Care, Oregon Health Sciences University
Department of Veterans Affairs Medical Center (Portland)
Health Law Section, Oregon State Bar
Kaiser Permanente, Northwest
Legacy Health System
National Association of Oncology Social Workers
Oncology Nursing Society, Mt. Hood Chapter
Oregon Alliance of Senior and Health Services
Oregon Association for Home Care
Oregon Association of Hospitals and Health Systems
Oregon Board of Medical Examiners
Oregon Board of Pharmacy
Oregon Health Care Association
Oregon Health Division
Oregon Hospice Association
Oregon Medical Association
Oregon Nurses Association
Oregon Psychiatric Association
Oregon Psychological Association
Oregon Society for Social Work Administrators in Health Care
Oregon State Board of Nursing
Oregon State Pharmacists Association
Sisters of Providence Health System
Tri-County Physician Supervisors Group and State EMS Committee
United Hospital Fund
Hospital Palliative Care Initiative
Contact: Connie Zuckerman, Project Director
Hospital Palliative Care Initiative
United Hospital Fund
350 Fifth Avenue, 23rd Floor
New York, NY 10118
212-494-0729
www.uhfnyc.org/initiat/initiat.htm
The United Hospital Fund's Hospital Palliative Care Initiative is a multi-year, multimillion dollar, 12-hospital research and demonstration initiative with goals to analyze and improve the quality of hospital care for persons near the end of life and to develop new hospital-based palliative care services in New York City hospitals. This initiative seeks to assess and fundamentally change the way hospitals in New York provide care for persons near the end of life and for their families. The initiative blends collaborative analysis and grantmaking to support demonstration projects at five New York City hospitals. Fund staff are directing a rigorous program evaluation and a dissemination strategy involving invitational meetings, conferences, and targeted publications.
The initiative is now in its second phase, following a one-year planning and development phase, in which 12 New York City teaching hospitals, academic medical centers, community hospitals, and municipal hospitals were awarded grants to conduct the research and data collection activities necessary to understand barriers to providing palliative care services and to develop appropriate models of palliative care service delivery within their institutions. In phase II, which began March 1997, 5 of the 12 hospitals were awarded $225,000 grants over a two-year period to implement programs based on the findings from Phase I. The five participating hospitals are:
Brooklyn Hospital Center: Building Expertise, Respecting Boundaries
Montefiore Medical Center: Changing Physician Behavior
Mount Sinai Medical Center: Putting Education into Practice
Saint Vincent's Hospital and Medical Center: Raising Consciousness, Integrating Services
To supplement the individual planning projects and the collaborative efforts of grantees working with fund staff, the fund will also conduct its own research activities within these hospitals to further the role of hospital culture and organization as they relate to the delivery of care near the end of life. The fund will publish a report on end-of-life issues in the summer of 1997, drawing heavily on data provided by the hospitals participating in the initiative. It has also used its own grant program to support the work of other experts working in the field. The fund has awarded a one-year grant to support a medical sociologist's study of patterns of end-of-life care and decisionmaking in several NYC hospitals and has awarded another grant to the New York Academy of Medicine to develop an educational program for physicians and other clinicians in palliative care.
University of California—San Diego
A Comparison of Treatments Provided to Terminally Ill Patients
in Managed Care and Fee-for-Service Settings
Contact: Lawrence J. Schneiderman, M.D.
Department of Family and Preventive Medicine
9500 Gilman Drive
La Jolla, CA 92093-0622
619-534-4206
The purpose of this study is to measure the effects of managed care on the types and volume of care delivered to the terminally ill. The study focuses on Medicare beneficiaries for two reasons: first, because fee-for-service data are readily available on all Medicare decedents, and second, because large numbers of decedents are enrolled in Medicare. The study seeks to determine whether the medical care delivered to Medicare enrollees in HMOs is any different from the medical care delivered to their fee-for-service counterparts.
University of New Mexico
Project with Hospices
Contact: Walter Forman, M.D., F.A.C.P.
2100 Ridgecrest Drive, SE
Albuquerque, NM 87168
505-272-6082
This is a collaborative project with the hospices in Taos, Santa Fe, Gallup, and Alamogordo to develop a permanent regional educational, training, consulting, and research service in palliative care, including culturally sensitive palliative care.
University of Pittsburgh Medical Center
Evaluating Health Providers' Communication with the Terminally Ill
Contact: Gary Fischer, M.D.
Assistant Professor of Medicine
Division of General Internal Medicine
Montefiore University Hospital, Suite W933
200 Lothrop Street
Pittsburgh, PA 15213-2582
412-692-4857
Over the last ten years, medical educators have identified deficiencies in the care of the terminally ill and developed interventions to correct the problems, yet it is difficult to know if these interventions are improving physicians' interactions with dying patients. This physician-patient communication project will develop a tool for teaching and evaluation purposes. The tool will be used to assess the behavioral skills of health care professionals who care for the terminally ill by using four standardized patient scenarios regarding both giving bad news and eliciting patient preferences.
University of South Florida College of Medicine
Decision to Enter Hospice in the 90s
Contact: Ronald S. Schonwetter, M.D.
University of South Florida College of Medicine
Division of Geriatric Medicine
12901 Bruce B. Downs Blvd., Box 19
Tampa, FL 33612
813-877-2200
The purpose of this project is to identify the factors that affect the decision whether to choose palliative/hospice care or to continue with a traditional/curative approach to care for a group of cancer patients with limited life expectancy. Structured interviews will be conducted with cancer patients, their caregivers, and physicians to examine this decision. Interviews will be conducted at The Hospice of Hillsborough, Inc., H. Lee Moffitt Cancer Center and Research Institute, and Tampa General Hospital. Programs should be developed as a result of this study to overcome barriers to receiving hospice care and increase access for terminally ill patients in need of such care.
University of Washington
Assessing Physician Performance in End-of-Life Care
Contact: Paul G. Ramsey, M.D.
Professor and Chair, Department of Medicine
University of Washington, Box 356420
Seattle, WA 98195-6420
206-543-4043
Physicians have a key role in directing care and resources to dying patients. Physicians are in a position to provide support and information to patients and their families as well as facilitate a team approach. Despite increasing interest in improving end-of-life care, no systematic method to assess a physician's performance in this area has been developed.
The evaluation system being developed will be a reliable, valid and comprehensive tool to evaluate physicians' care of dying patients. It will use ratings from peer physicians and nurses, as well as ratings from patients and their primary surrogates (family or close friends) to assess the physician's skills at the end of life.
University of Wisconsin Comprehensive Cancer Center
A Resource Program to Address Barriers to Availability of Opioids
for Pain Relief
Contact: David E. Joranson, M.S.S.W., Director
Policy Studies, Pain Research Group, WHO Center
1900 University Ave.
Madison, WI 53705-4013
608-263-7661
www.biostat.wisc.edu/cancer/homepage.html
Although most pain associated with cancer and AIDS for both adults and children can be relieved by the use of opioid analgesics, such as morphine, there are barriers to adequate availability of opioid analgesics for medical use. These barriers include inadequate knowledge of pain physiology, pain management, and pharmacology; exaggerated fear of addiction; legal and regulatory restrictions; uneven health care coverage; lack of funding for health care services; high costs of some opioid medications; lack of opioid policy-related studies; and lack of opioid policy initiatives in the United States and in other countries.
A resource program will be developed to improve the capability of the Pain and Policy Studies Group to provide expert assistance to those seeking to reduce barriers to appropriate use of opioids in the United States and to help develop a cancer pain and palliative care initiative for central and eastern Europe. The center already provides expertise in the area of global pain and opioid availability policy studies and communications, including productions of the WHO newsletter Cancer Pain Release. A Resource Guide will be produced and disseminated and a World Wide Web site will be created.
Vermont Ethics Network
Contact: John Campbell, Executive Director
Arnold Golodetz, M.D.
Vermont Ethics Network
City Center—89 Main Street
Drawer 20
Montpelier, VT 05620
802-828-2909
The Vermont Ethics Network is a private, nonprofit educational organization consisting of professional and laypeople throughout Vermont who are interested in medical ethics, and who participate as volunteers in VEN's educational work. The mission is to promote public and professional awareness and understanding of ethical issues in modern health care, and to enhance decisionmaking based on values and principles on both personal and social levels.
Using a grassroots approach, VEN designed the Journey's End Project. They will hold a series of community forums to discuss what Vermonters generally think is the proper distribution of health care resources between hospital care, home care, hospice, and long-term care. The results of the forums will be discussed with health care providers in order to develop practical guidelines for achieving the public's goals. The goals and guidelines will then be presented to policymakers for further discussion and eventual implementation. The group has also published a booklet, Taking Steps, which provides a useful information format and worksheet for the public on advance directives.
The Whitmore Foundation
Hospice for the Deaf
Contact: Judith Lauterstein, Ph.D.
The George Whitmore Foundation
33 East 38th Street, Suite 3A
New York, NY 10016
212-867-6521
When hospitalized, the deaf frequently sustain long periods of social isolation. They cannot communicate with doctors and other hospital staff unless a qualified interpreter is present. Currently, there are no hospice programs actively serving the deaf community. The George Whitmore Foundation, in collaboration with the Jacob Perlow Hospice, will create a program of hospice care for the deaf at the end of life. A key component of this pilot program will be the collection of data from the deaf community about their experiences with end-stage illness.
Additional Internet Sites of Interest
The Compassionate Friends: longhorn.jjt.com/~tcf_national
Growth House, Inc.: www.growthhouse.org
The International Work Group on Death, Dying, and Bereavement: www.wwdc.com/death/iwg/iwg.htm
The Union of American Hebrew Congregations: rj.org/uahc/conv/adres/care.html
Health Care Financing Administration: www.hcfa.gov
Agency for Health Care Policy Research: www.ahcpr.gov