First Annual Activities Report 1996

...to care always

The Center to Improve
Care of the Dying

Mission

The Center to Improve Care of the Dying (CICD) was founded in 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.

CICD is a unique, interdisciplinary team of committed individuals, engaged in research, advocacy, and education activities to improve the care of the dying.

CICD's major areas of focus include :

* understanding current practice and outcomes

* measuring quality and
developing accountability

* educating practitioners,
managers, and the public

* improving service through
innovation and evaluation

* changing the practice
environment

The Center to Improve Care of the Dying

First Annual Activities Report 1996

Institute for Heal th Policy, Outcomes, and Human Values

The George Washington University Medical Center

1001 22nd Street, N.W., Suite 820

Washington, DC 20037

Joanne Lynn, M.D., M.A., M.S., Director

For reports or other information:

Phone: (202) 467­2222 * Fax: (202) 467­2271

E-mail: cicd@gwis2.circ.gwu.edu

December 1996

From The Director

Death in the past was mostly from infectious disease and accidents. Now chronic illnesses such as dementia, stroke, heart disease, and obstructive lung disease are the major causes of sickness and death. We are living longer, often into our eighties and nineties, yet we still die. Our health care system does very little to meet the needs of those who are dying.

People facing the end of life often die in demeaning and undesirable circumstances. The end of life, which could grant immediacy and meaning to the rest of living, has been both trivialized and brutalized.

We should listen to the voices of suffering patients whose reasonable claims to comfort and compassion have largely fallen on deaf ears. In a health care system that has

failed to provide good care, physician-assisted suicide sometimes appears to be the only recourse. In turn, as controversial social issues become legal issues, our thinking becomes constrained by stereotyped language, and we become blind to our responsibilities to care. Effective reform arises from an understanding of how our care system now treats persons who are dying and from understanding how we could do better. The Center to Improve Care of the Dying is dedicated to having people confident of a comfortable and meaningful time as their lives come to a close.

 
Joanne Lynn, M.D., M.A., M.S.
 

2

Year In Review

 

Highlights Of The Year Include:

convening a national symposium designed to explore
the meaning of a "good death" and to develop policies and systems to achieve such a death

writing an amicus brief on behalf of the American Geriatrics Society for cases coming before the U.S. Supreme Court on physician-assisted suicide

defining quality care at the end of life and
developing ways for facilities to measure and to begin
to improve quality

publishing 18 professional articles focusing on
patient decision-making, advance directives,
patient-provider communication, re source use,
prognostic models, and long term care

serving as a resource for hundreds of inquiries from
the news m edia, the public, policy makers,
researchers, and students

providing clinical care to several nursing homes
and h ospice facilities

speaking to professional and public audiences

growing to a dynamic multi-disciplinary staff of 15,
with additional volunteers

 

Initiatives

1. Understanding Current Practice And Outcomes

Costs of care and quality of life for the seriously ill

Resource Use in Seriously Ill Medicare Patients will estimate costs for the care of seriously ill, hospitalized patients age 80 and older. CICD investigators are analyzing the effects of patient, family, and care system characteristics. Quality of life for each of various kinds of care will be characterized. This project is funded by the Agency for Health Care Policy and Research.

The process of dying: patient decision-making and palliative care

The Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatment (SUPPORT), a 10-year project, provided information on the process of dying for over 5,000 hospitalized patients. This multi-center study, co-directed by CICD Director, Dr. Joanne Lynn, aimed to increase patient control over care decisions at the end of life and to reduce the frequency of a mechanical, painful, and prolonged process of dying, so often imposed by a technology-oriented health care system. The study highlighted the complexity
of large-scale intervention in the established health care milieu; it also described outcomes, patient preferences, processes, and costs. The Robert Wood Johnson Foundation provided funding and continues to build allied projects in this area.

The Hospitalized Elderly Longitudinal Project (HELP) expanded SUPPORT to a group of hospitalized persons 80 years and older. The project describes their health care decision
making. As in SUPPORT, a prognostic model for mortality and severe functional impairment in older persons has
been developed.

2. Measuring Quality And Developing Accountability

Performance measures and procedures to measure quality of care

Health care institutions cannot improve what they cannot measure. CICD is developing a Toolkit with a set of performance measures and procedures to assess quality of care at the end of life. The Nathan Cummings Foundation, the Agency for Health Care Policy and Research, and the Robert Wood Johnson Foundation provided the funding to begin this project.

Defining the domains to measure

CICD developed, on behalf of the American Geriatrics Society, a paper calling upon funders and providers to learn to measure and improve quality of care at the end of life. It lists the Domains which should be addressed, including physical and emotional symptoms, support of function and autonomy, advance planning, global quality of life, and patient and family satisfaction. More than three dozen organizations have signed onto the "Measuring Quality of Care at the End of Life" statement, including hospice and nursing organizations, the American Medical Association, the American Association of Retired Persons, and the American Pain Society. The paper was presented at a hearing before the Institute of Medicine's Committee on Care at the End of Life and was the conceptual anchor for CICD's national symposium, "A Good Dying: Shaping Health Care and Finding Meaning for the Last Months of Life." Funding for this project was provided by the AARP Andrus Foundation.

 

3. Educating Practitioners, Managers, And The Public

What to expect when dying: Resources for dying persons, their families, and caregivers

 

The Handbook for Mortals, to be published by Oxford University press in 1998, will be a resource for dying persons, their families, and caregivers who want to know what to expect when dying. With its help, the dying person and the family can live fully in the time remaining. The book will characterize what decisions will be faced, what choices are (or should be) available, how to negotiate the health care system, how to ease pain and other symptoms, where to look for spiritual and emotional solace, and whom to ask for help. Funding from the Sloan Foundation and the Retirement Research Foundation has made this project possible.

Patients' faith and belief systems enhancing medical student
education

Integrating Faith and Medicine Throughout Medical School Training: An Integrated Curriculum, a graduate level course, is being developed to increase medical students' awareness of the importance of patients' faith and belief systems. Throughout the four years of academic training, medical students will learn how to ask about patients' belief systems and to help patients use their beliefs in dealing with their illnesses and preparing for death. This project is funded by the National Institute for Healthcare Research.

First-hand experience in care of the dying: residency training

CICD has developed and continues to refine a mentoring program, working with medical students and
residents at several metropolitan Washington area medical facilities. Focusing on the integration of palliative care into the educational training program, trainees learn the critical elements of providing good care, including pain and symptom management and communication skills.

Evaluating the quality of medical education texts

The Textbook project reviewed and evaluated general medical textbooks to determine how well information was presented to guide physicians in caring for the dying patient . The conclusion was that these medical textbooks provided little practical information on the care of the dying patient. CICD is encouraging editors and authors to focus attention on these issues. Editors of The Merck Manual, a medical text for doctors, have made it a priority to address important aspects of dying in their next edition. Funding for this project was provided by the Open Society Institute.

Public speaking

Public speaking allows for dissemination and exchange of information with a variety of audiences, including professional and consumer groups and organizations. With a multi-disciplinary staff, presentations include the ethical, legal, medical, philosophical, policy, research, and socio-cultural issues surrounding care of the dying. Staff also contribute scientific and conceptual articles, editorials, and commentary to a wide array of publications.

CICD has taken an ongoing interest in helping the news media to explore the rich and complex experience of dying. For example, Dr. Lynn participated in the PBS special Who Plays God? Medicine, Money, and Ethics in American Health Care, produced by WETA, Washington, D.C. This program, developed for public television, portrays poignant stories of families grappling with their problems and the role their medical providers play in their decisions about life and death situations.

The World Wide Web

A Web Site is being developed that will allow for the collection and dissemination of information. CICD plans to be on-line in early 1997.

4. Improving Service Through Innovation And Evaluation

Model programs for care of the dying: a resource for professionals

CICD is developing a comprehensive guide, The Sourcebook on Dying, for those who aim to improve their care systems. It will focus on the epidemiology of dying, patterns of treatment and service, the experience of dying persons, family roles, and financing for the dying. Dying of specific diseases, socio-cultural factors influencing how we die, and differences in dying by age will be examined. Model programs will be highlighted. Funding is provided by the Retirement Research Foundation.

National symposium: defining a good death

A symposium entitled "A Good Dying: Shaping Care and Finding Meaning for the Last Months of Life" engaged participants from academic, professional, consumer, and governmental groups in defining what we mean by a "good death" and in exploring what policies and systems might improve care of the dying in our health care system. Co-sponsored by The Corcoran Gallery of Art, the symposium was held in conjunction with the Corcoran's exhibition, "Hospice: A Photographic Inquiry." This project was funded through the generosity of a number of donors, including The Greenwall Foundation.

Intervention program to improve communication

The project called Advance Care Planning for Improved Care at the End of Life in Managed Care is working with consumers, health care providers, and experts to guide managed care organizations in their care of dying persons. The focus of this project is to design and pilot a way to plan ahead, before the patient is unable to participate in decision-making. This project is funded through the Open Society Institute Project on Death in America.

5. Changing The Practice Environment

Beyond hospice: Comprehensive, supportive, community-based
services for a broad population of dying persons

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 currently benefits from the Medicare hospice program. MediCaring would provide 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 family role, and identify appropriate limits on medical interventions. The short-term goal is to have managed care organizations, Veterans Administration medical centers, and the Medicare program implement demonstration programs to learn how best to shape policy.

Physician-assisted suicide: further debate needed

On behalf of the American Geriatrics Society, CICD responded to the pending U.S. Supreme Court cases regarding whether a citizen has a right to physician-assisted suicide. The amicus brief said that the cases were misleading in disease type, patient age, and absence of poverty or social or physical disability. Futhermore, all the constraints being proposed (terminal
illness, competence, no undue influence, etc.) were unworkable. Since wise policy about good care of the dying is dependent upon better information and more debate, physician-assisted suicide, it was argued, should not be protected by the Constitution.

 

 "They kind of turned us over to hospice when we
got home--there should have been more overlap in time between the
health care team and the hospice...I still should be able to talk to the doctor when I am at home, and not just be turned over all at once to people that I don't know."

Part of a family report in CICD research to
improve services in integrated care systems.

"


"During her last week, she had no indication that her life would be ending. She trusted the recommendations of her physician, even though it was against her own judgment to have chemo to prolong her life..."

Interview with a family member for CICD research to better understand the needs of patients and their families.

 

 "How people die remains
in the memories of those
who live on."

Dame Cicely Saunders, founder
of the modern
 

 "Improvement is within our reach. Not marginal improvement, but fundamental, breakthrough-level changes that are better for patients, families, clinicians, and payers."

Donald M. Berwick, M.D. in "Quality Comes Home," Annals of Internal Medicine 1996;125(10):841.

 

The Future

 

CICD will:

develop demonstration projects to
understand and improve particular
aspects of end of life care

develop a care system for the end of
life through substantive reform-- MediCaring

stimulate widespread quality
improvement in caregiver
organizations with the aid of
the Toolkit

improve medical and continuing education for healthcare
professionals

complete several SUPPORT/HELP projects: e.g., defining the meaning of pain and identifying t he role of nursing in the intervention

shape opportunities for reform through better information and by stimulating public demand

develop and implement quality of care at end of life demonstration projects

create measurement instruments
to measure patient and family
satisfaction

support and collaborate with others in this work

ensure visibility to end-of-life issues
 

 In the coming year ,
CICD will build upon
the momentum of its first year to identify and
develop projects that
will continue to improve
end of life care.

 

Staff

 

The Center to Improve Care of the Dying's promise, "...to care always," embodies the sentiment and commitment of its staff.

Joanne Lynn, M.D., M.A., M.S.

Director

Dr. Lynn is a professor of Health Care Sciences and Medicine at The George Washington University Medical Center. She is a geriatrician and the founder of CICD. Dr. Lynn
has served as medical director of several nursing homes and hospice facilities,
co-directed the Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments (SUPPORT), served as project director of the President's Commission for the Study
of Ethical Problems in Medicine and Biomedical and Behavioral Research, and was principal writer of that Commission's book, Deciding to Forego Life-Sustaining Treatment. As an expert on end-of-life issues, she has been on the Institute of Medicine's Committee on Care at the End of Life, on the American Bar Association's Commission on Legal Problems of the Elderly, and on the Hastings Center Task Force, which wrote Guidelines for the Termination of Treatment and the Care of the Dying.

Joan M. Teno, M.D., M.S.

Associate Director

Dr. Teno is a geriatrician-internist and health services researcher. Her research focus has been on measuring and evaluating interventions to improve and enhance the quality of medical care for seriously ill and dying patients. Dr. Teno led the effort in design of the SUPPORT intervention analysis and has served as lead author in 12 publications from that research effort, ranging from the role of advance directives to describing the dying experience of the seriously ill and older adults. In the past year, Dr. Teno has received funding from the Nathan Cummings Foundation, Robert Wood Johnson Foundation, and the Project on Death in America to develop new measures of end of life care and assess the quality of medical care in managed care.

Anne Boling, M.S.

Executive Coordinator

Ms. Boling has a background
in health care administration and is currently pursuing studies in psychology. She previously served as assistant to the CEO at Howard University Hospital and to the vice president for Administrative Services at Children's Hospital. She has also worked as a financial manager for Michigan State University. At CICD, Ms. Boling is responsible half-time for administrative coordination and ha lf-time for research and writing for Center projects.

Felicia G. Cohn, Ph.D.

Senior Scientist

Dr. Cohn is a research adjunct assistant professor in the Department of Health Care Sciences where she develops core curriculum and teach es ethics and humanities courses for students with multi-disciplinary backgrounds. Dr. Cohn also serves on the University Hospital's ethics committee. She
previously served as a member of the Ethics Consultation Service at the University of Virginia' s Health Care Sciences Center. At CICD, Dr. Cohn is co-course director of the curriculum integrating faith and medicine throughout medical school training.

Joan K. Harrold, M.D., M.P.H.

Physician Researcher

Dr. Harrold, a primary care physician, is an associate medical director of the Hospice of Northern Virginia. Her background includes epidemiological methods, patient and professional education, and public health research. As a fellow in the Division of Cancer Prevention and Control, National Cancer Institute, Dr. Harrold evaluated cancer prevention education materials for low literate adults. She also co-developed a proposal to improve physicians' efforts to educate their patients about cancer prevention. At CICD, Dr. Harrold is developing a curriculum for hospice and palliative care for medical students and residents and is mentoring students and residents at Hospice of Northern Virginia. She is also the co-principal investigator for the Handbook on Dying, a consumer resource o n dying, and co-course director of the curriculum integrating faith and medicine throughout medical school training.

Anne Wilkinson, Ph.D., M.S.

Senior Scientist

Dr. Wilkinson is an associate professor of Health Care Sciences and Medicine. A gerontologist and health services researcher, she was previously a senior research associate with the Institute for Health and Aging, School of Nursing, University of California, San Francisco. Dr. Wilkinson has worked as project director for the Medicare Alzheimer's Disease Demonstration Evaluation, funded by the Health Care Financing Administration (HCFA) and has been involved in numerous health services and aging-related research projects, funded by the National Institute on Aging, the Administration on Aging, and HCFA. In addition to her extensive research experience, Dr. Wilkinson has worked in a number of public service agencies related to aging, community action, and health systems. Dr. Wilkinson is directing work on several projects at CICD, including the MediCaring project for improving the care of the dying in a managed care system, and the development of the Sourcebook on Dying and Handbook for Mortals.

Zhenshao Zhong, M.S.

Ph.D. Candidate
Research Associate

Mr. Zhong is a statistician whose areas of specialization include survival analysis, the testing of hypotheses, regression analysis, ANOVA, numerical analysis, and operations research. Mr. Zhong is a Ph.D. candidate in statisti cs at the University of Maryland. At CICD, he is analyzing data for the SUPPORT study.

Support Staff

Elise Ayers, M.P.H., L.S.W.

Coordinator, Special Projects

Prior to coming to CICD, Ms. Ayers served as the director of a statewide women's cancer screening program in South Carolina, funded by the Centers for Disease Control and Prevention. She has worked as a health research analyst in women's health, ethics, and cancer. In addition, she has been a social worker in a gero-psychiatric nursing home and an assistant to the chairman in an academic public health setting. At CICD, Ms. Ayers is responsible for the oversight of several special projects, including this annual report.

Kristen Landrum, M.P.H. Candidate

Research Assistant

Ms. Landrum's work focuses on measuring end of life care in an HMO
setting and designing measurement tools for use by hospitals and integrated health systems. Prior to working at CICD, Ms. Landrum served as a health care consultant to a local health care advisory board.

Joel Smith

Research Assistant

Mr. Smith's work focuses on supporting the substantive and technical aspects of CICD's research projects relating to the study of preferences and practices in end of life care and the development of The Handbook on Mortals and the Sourcebook on Dying. Mr. Smith previously worked as a paralegal at Perkins Coie in Washington, D.C.

Lisa Spear

Medical Secretary

With an admini strative background in academic and medical settings, Ms. Spear provides administrative support to CICD. She has a degree in dance, with an emphasis in art management and has served on local and national advisory boards.

John Thompson

Research Aide

Mr. Thompson is responsible for compiling research efforts and maintaining the reference file management system. Mr. Thompson previously worked as a certified technician in a variety of United States Air Force clinical settings, including allergy and immunization.

Comings and Goings

In our first year, we also benefited from having Ellie Carper as administrative associate, Donna Hawkins as secretary, and Patrick Keaney as research assistant. As we start our second year, we have regular part-time involvement of Phyllis Schmitz, R.N., Anna Moretti, R.N., J.D. and Christine Puchalski, M.D. who are working on The Handbook for Mortals, the Sourcebook on Dying and the curricula on spirituality.

< /TABLE>

 

 "We had no part in the medical decision making. My uncle was not involved with the doctors about choices. They just decided what to do. I am sorry, that really bothered me..."

From a family
interview after death, part of CICD research aimed to understand patient and family needs.
 

 CICD has advised and assisted dozens of researchers, educators and innovators seeking to understand and improve current care. We are especially concerned that society value the roles of families and that we explore changes in roles for professional caregivers.

 

 

 "...death, a necessary end, Will come
when it will come."

William Shakespeare,
Julius Caesar

 

 

Publications 1995­1996

Articles From The SUPPORT Study:

Covinsky KE, Landefeld S, Teno J, Connors AF Jr., Dawson N, Youngner S, Desbiens N, Lynn J, Fulkerson W, Reding D, Oye R, Phillips RS, for the SUPPORT Investigators. Is economic hardship on the families of the seriously ill associated with patients and surrogate care preferences?
Arch Intern Med 1996;156:1737-1741.

Hakim RB, Teno JM, Harrell FE Jr., Knaus WA, Wenger N, Phillips RS, Layde P, Califf R, Connors AF Jr., Lynn J, for the SUPPORT Investigators. Factors associated with do not-resuscitate orders: Patients' preferences, prognoses, and physicians' judgment.
An n Intern Med 1996;125:284-293.

Hamel MB, Goldman L, Teno JM, Lynn J, Davis RB, Harrell FE, Connors AF, Califf R, Kussin P, Bellamy P, Vidaillet, Phillips RS. Identification of comatose patients at high risk for death or severe disability.
JAM A 1995;273:1842-1848.

Hamel MB, Phillips RS, Teno JM, Lynn J, Galanos AN, Davis RB, Connors AF, Oye RK, Desbiens N, Reding DJ, Goldman L, for the SUPPORT Investigators. Seriously ill hospitalized adults: Do we spend less on older patients?
J Am Geriatr Soc 1996;44:1043-1048.

Knaus WA, Harrell FE, Lynn J, Goldman L, Phillips RS, Connors AF, Dawson NV, Fulkerson WJ, Califf RM, Desbiens N, Layde P, Oye RK, Bellamy PE, Hakim RB, Wagner DP. The SUPPORT prognostic model: Objective estimates of survival for seriously ill hospitalized adults.
Ann Intern Med 1995;122:191-203.

Layde PM, Beam CA, Broste SK, Connors AF, Desbiens N, Lynn J, Phillips RS, Reding D, Teno J, Vidaillet H, Wenger N. Surrogates' predictions of seriously ill patients' resuscitation preferences.
Arch Fam Med 1995;4:518-523.

Layde PM, Broste SK, Desbiens N, Follen M, Lynn J, Reding D, Vidaillet H. Generalizability of clinical studies
conducted at tertiary care medical centers: A population-bas ed analysis.
J Clin Epidemiol 1996;49:835-841.

Lynn J, Harrell FE, Cohn F, Hamel MB, Dawson N, Wu A, for the SUPPORT Investigators. Defining the terminally ill: Insights from SUPPORT.
Duquesne L Rev 1996;35:311-336.

Lynn J, Teno JM, Harrell FE.
Accurate prognostications of death: Opportunities and challenges for
clinicians.
West J Med 1995;163:250-257.

Phillips RS, Hamel MB, Teno JM, Bellamy P, Broste SK, Califf RM, Vidaillet H, Davis RB, Muhlbaier LH, Conn ors AF, Lynn J, Goldman L, for the SUPPORT Investigators. Race, resource use, and survival in seriously ill hospitalized adults.
J Gen Intern Med 1996;11:387-396.

Phillips RS, Wenger NS, Teno JM, Oye RK, Youngner S, Califf R, Layde P, Desbien s N, Connors AF, Lynn J, for the SUPPORT Investigators. Choices of seriously ill patients about cardiopulmonary resuscitation: Correlates and outcomes.
Am J Med 1996; 100:128-137.

Rosenfeld KE, Wenger NS, Phillips RS, Connors AF, Dawson NV, L ayde P, Califf RM, Liu H, Lynn J, Oye RK, for the SUPPORT Investigators. Factors associated with change in resuscitation preference of seriously ill patients.
Arch Intern Med 1996;156:1558-1564.

Teno JM, Hakim RB, Knaus WA, Wenger N, Phillips RS, Wu AW, Califf R, Layde P, Connors AF, Dawson NV, Lynn J for the SUPPORT Investigators. Preferences for CPR: Physician-patient agreement and hospital resources.
J Gen Intern Med 1995; 10:179-186.

Teno JM, Lynn J, Phillips RS, Murphy D, Yo ungner SJ, Bellamy P, Connors AF, Desbiens NA, Fulkerson W, Knaus WA. Do formal advance directives affect resuscitation decisions and the use of resources for seriously ill patients?
J Clin Ethics 1994;5(1):23-30.

The SUPPORT Investigators. A controlled trial to improve care for seriously ill hospitalized patients: The study to understand prognoses and preferences for outcomes and risks of treatments (SUPPORT).
JAMA 1995;274: 1591-1598.

Wenger NS, Oye RK, Desbiens NA, Phillips RS , Teno JM, Connors AF, Liu H, Zemsky MF, Kussin P. The stability of DNR orders on hospital readmission.
J Clin Ethics 1996;7:48-54.

Wu AW, Damiano AM, Lynn J, Alzola C, Teno J, Landefeld CS, Desbiens N, Tsevat J, Mayer-Oakes A, Harrell FE, Kn aus WA. Predicting future functional status for seriously ill hospitalized adults: The SUPPORT model.
Ann Intern Med 1995;122:342-350.

Lynn J, Teno JM, Phillips RS, Wu AW, Desbiens N, Harrold J, Claessens MT, Wenger N, Kreling B, Connors A, f or the SUPPORT Investigators. Perceptions by Family Members of the Dying Experience of Older and Seriously Ill Patients.
Ann Intern Med 1997;126(2):97-106.

Lynn J, Harrell F, Cohn F, Wagner D, Connors AF, for the Support Investigators. Prognos es of seriously ill hospitalized patients on the days before death: Implications for patient care and public policy. New Horizons. (In press)

Teno JM, Licks S, Lynn J, Wenger N, Connors AF, Phillips RS, O'Connor MA, Murphy DP, Fulkerson WJ, Desbie ns N, Knaus WA, for the SUPPORT Investigators. Do advance directives
provide instructions which direct care?
(In press)

Teno JM, Lynn J, Connors AF, Wenger N, Phillips RS, Alzola C, Murphy DP, Desbiens N, Knaus WA, for the SUPPORT Invest igators. The illusion of end-of-life resource savings with advance directives. (In press)

Teno JM, Lynn J, Wenger N, Phillips RS, Murphy DP, Connors AF, Desbiens N, Fulkerson W, Bellamy P, Knaus WA, for the SUPPORT Investigators. Advance directive s for seriously ill hospitalized patients: Effectiveness with the patient self-determination act and the SUPPORT intervention. (In press)

 

 "Everyone should be
confident of receiving
compassionate and
appropriate care as he
or she enters the valley
of the shadow of de ath."

Joanne Lynn, M.D., M.A., M.S., Director, Center to Improve
Care of the Dying

 

 "It is a great art
to die well..."

Seventeenth-
century English cleric Jeremy Taylor, The Rules and Excercises
of Holy Dying
 

 With a full year be hind
us, the work of CICD
has been marked
by challenges,
promise, and, most
importantly, progress.
.

 

 

Other Selected Articles:

 

 "It hath been often said, that it is not death, but dying which is terrible."

Henry Fielding, Amelia [1751].
Book III, Chap. 4

 

Amicus Brief for the American Geriatric Society, Quill v. Vacco, 80 F.3d 716 (2d Cir.1996) and Compassion in Dy ing v. State of Washington,
79 F.3d 790 (9th Cir.1996).

Council on Scientific Affairs, AMA. Council report: Good care of the
dying patient.
JAMA 1996;275 (6)474-478.

Harrold JK. Last Wishes Ignored:
Why we must protect end-of-life
decision making.
Aging Today, American Society on Aging, January­February 1996.

Harrold JK. New study reveals many patients die high-tech, painful deaths--efforts to improve communication not enough to effect change. Comm unique, American Nurses Association Center for Ethics and Human Rights,
Winter 1995-96.

Lynn J. Caring at the end of our lives.
N Eng J Med 1996;335:201-202.

Newcomer RJ and AM Wilkinson, eds. Focus on Managed Care & QualityA ssurance Integrating Acute & Chronic Care. vol. 16 Annual Review of Gerontology and Geriatrics,
vol. 16. (New York: Springer Publishing Company, 1996.)

Wilkinson AW. "Past Research on Long Term Care Demonstrations." In Annual Re view of Gerontology and Geriatrics,
vol 16. (New York: Springer Publishing Company, 1996.)

Lynn J and Teno J. "A Care Provider Perspective on Advance Directives and Surrogate Decision-Making for Incompetent Adults in the US" in Adva nce Directives and Surrogate Decision-Making in Transcultural Perspective, eds. Sass, Hans-Martin, Veatch, Robert M, Rihito Kimura.
(In press)

Please tear here

Publications / Materials Order Form

The Center to Improve Care o f the Dying

George Washington University

1001 22nd St., N.W.

Suite 820

Washington, D.C. 20037

Phone: (202) 467­2222

Fax: (202) 467­2271

Email: cicd@gwis2.circ.gwu.edu

Ship to:

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We are happy to make available an array of our materials.
Please let us know if there is somethin g else you need.Quantity Materials to be ordered # of Slides in Set Cost Total Slides

SUPPORT Core Slides 38 $150

Advance Directive Slides 21 $80

Prognostic Slides 8 $30

Futility Slides 4 $15

Cost-Effectiveness Slid es 4 $15

AHCPR Slides 2 $10

Lessons from SUPPORT Slides 16 $65

Cruzan Gravestone Slide 1 $10

Publications

Amicus Curiae Brief $25

Domains Paper, with signatories $5

SUPPORT Bibliography--lists all articles from SUPPORT and HELP
(including CICD authored)

Any reprint--single copies free,
multiple copies for $0.15/page

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Thanks

For their cooperation and assist ance in
preparing this report, we would like to
give special thanks to:

The Hospice of Nortern Virginia

Thomas House, Washington, D.C.

Production:

The GW PR Group

Photography:

Doug Barber Photograp her

Design:

Manger & Associates, Inc.

 

The Center to Improve Care of the Dying

George Washington University

1001 22nd St., N.W.

Suite 820

Washington, D.C. 20037 capt