Resources on End-of-Life Care
End-of-Life Care – Additional Resources
Books and Booklets
Journal Articles
Web Sites
Educational Videos
Books and Booklets
American Medical Association (1999). Cultural Competence Compendium. Chicago: The American Medical Association.
American Medical Association 515 North State Street, Chicago, IL 60610 312-464-4697 http://www.ama-assn.org
As the first product of the AMA's broad-based Cultural Competence Initiative, the Cultural Competence Compendium results a comprehensive application to the term "culture." The publication includes resources for health care and communication issues confronting people from underrepresented and undeserved racial, ethnic and socioeconomic groups and those with physical or mental illnesses or disabilities. The publication also features resources for children and adolescents, older adults, and people at the end of life, as well as for those dealing with issues related to domestic violence, genetic conditions, organ donation and sexuality.
American Pain Society (1999). Principles of Analgesic Use in the Treatment of Acute Pain and Cancer Pain, 4th Ed.
http://www.ampainsoc.org
A 64-page pocket guide containing practical information on pain assessment and treatment for acute cancer pain.
Barlow, Bruce (2000). Medical Care of the Soul. Johnson Books: Boulder, Colorado.
A Practical and healing guide to end-of-life issues for families, patients, and healthcare providers, exploring addressing advance directives, dealing with illness, goals, hopes and fears for the end of life and includes several valuable planning worksheets and copies of standard forms
Braun, K., Pietsch, J., & Blanchette, P. (2000). Cultural Issues in End-of-Life Decision Making. Sage Publications.
http://www.sagepub.com
Chapters on philosophical topics are interwoven with clinically-oriented ones including case examples that ground the reader in the reality of most human decisions at the end of life. The book is intended to prepare nurses, physicians, and other health care workers to guidance to patients and family members through challenges if decision making. Medical, Legal and Ethical context of the dying experience, discussing ethnic perspectives and religious issues are explored, presenting issues and a broad overview of culture and common religions in America.
Bruera, E. and Fainsinger (1995). Palliative Care Medicine: Patient-Based Learning. University of Alberta.
http://www.palliative.org
A 171-page manual based on 31 different clinical problems in end-of-life care, each presented in a case presentation format, followed by discussion, references, and multiple choice questions.
Bugen, L. (1979). Death and dying: Theory, Research, Practice. W. C Brown, Co. 1979. Dubuque, Iowa.
Huber, M.. (Ed.) (1994). Clinical Protocols for Care of Hospice Patients: An Interdisciplinary Approach. Hospice of Michigan Programs.
http://www.hom.org
Hospice of Michigan Corporate Headquarters, 400 Mack Avenue, Detroit MI 48201, 1-313-578-5000.
Iserson, K. (1999). Grave Words: Notifying Survivors About Sudden, Unexpected Deaths. Galen Press.
1-800-442-5369
A 342-page manual covering all imaginable aspects of adult and pediatric death notification, along with relevant aspects of grief/bereavement and communication skills.
Lynne, J. (2000). Improving Care for the End of Life. Oxford University Press.
http://www.mywhatever.com
Basic issues such as advance care planning and pain management are explored, and how groups can become change agents with a positive effect not only on care for the dying, but on care for other patients.
MacDonald, N. (1998). Palliative Medicine, a Case-Based Manual. Oxford University Press.
A 318-page manual containing 27 common end-of-life issues, including symptoms, ethics, home care, and spirituality. Each chapter contains learning objectives, followed by a case presentation, discussion of key learning points, and references.
Meyers, Charles (1998). A Good Death. Twenty-Third Publications: Mystic, CT.
Twenty-Third Publications. P.O. Box 180, Mystic, CT 06355 1-800-321-0411
Practical guide to options for a good death that has had national distribution by Last Acts and has been added to the curricula for numerous institutions teaching end-of-life care.
Sheehan, D.C. and Forman, W.B. (1996). Hospice and Palliative Care: Concepts and Practice. Jones and Barlett.
A 199-page manual divided into three sections: Introduction to Hospice, Common Challenges Faced by the Team, and Future of Hospice; covers the common physical and psychological end-of-life symptoms.
Storey, P. (1994). Primer of Palliative Care. American Academy of Hospice and Palliative Medicine.
http://www.aahpm.org
A 57-page guide to assessment an treatment of common physical and psychological symptoms in end-of-life care.
Weissman, D; Griffie, S; and Matson, S. (2000). Improving Pain Management in Long Term Care Settings. Medical College of Wisconsin.
This resource manual is for Long-Term Care facilities - designed to assist staff members improve pain management across the entire facility. The manual provides a comprehensive plan, tools and sample documents including: facility standards and policies, staff education resources, and quality improvement information. Cost: $52.08 ea. (includes sales tax $2.80 required by WI State and 4th class S/H).
Woodruff, R. (1993). Palliative Medicine. Asperula Pty, Ltd Publishers.
A 421-page manual covering all common aspects of end-of-life care, divided into seven sections: Introduction to Palliative Care, Pain, Other Physical Symptoms and Clinical Problems, Psychological Aspects of Care, Alternative and Complementary Medicine, AIDS, and the Practice of Palliative Care.
Journal Articles
Pan, C. X. & Meier, D.E. (2000). Clinical Aspects of End-of-Life Care. Gerontology and Geriatrics. 20, 273-308.
Christakis, N.A., Clipp, E C., McIntyre, L., McNeilly, M., Steinhauser, K.E., Tulsky, J.A. (2000). Factors Considered Important at the End of Life by Patients, Family, Physicians, and Other Care Providers. Journal of the American Medical Association (JAMA). 284 (19), 2476-2482.
Gorlin, R., Strain, J. J., Rosamond, R. (2001). Cultural Collisions at the Beside: Social Expectations and Value Triage in Medical Practice. Cambridge Quarterly of Healthcare Ethics. 10, 7-15.
Crawley, L., Payne, R., Bolden, J., Payne, T., Washington, P., September, W. Palliative and End-of-Life Care in the African-American Community. Journal of the American Medical Association (JAMA). 284 (19), 2519-2521.
Web Sites
Aging with Dignity (Five Wishes) http://www.agingwithdignity.org
The Aging with Dignity Web site contains the Five Wishes, a document that helps the aging express their final wishes and, unlike other living wills and advanced directives, sees to all of the person's needs: medical, personal, emotional and spiritual.
American Geriatrics Society http://www.americangeriatrics.org/index.shtml
The American Geriatric Society has a long history of effecting change in the provision of health care for older adults. In the last decade, the Society has become a pivotal force in shaping attitudes, polices and practices regarding health care for older people.
American Academy of Hospice and Palliative Medicine http://www.aahpm.org/
An International organization of physicians dedicated to the advancement of hospice and palliative medicine in the management of the terminally ill.
American Hospice Organization http://www.americanhospice.org
The American Hospice Foundation is the voice of those who face life-limiting illness and significant loss. The foundation advances the hospice concept of care and promotes hospices that seek to meet growing and complex needs. By forging new partnerships at the local and national levels, the foundation ensures the availability of hospice care for many who might otherwise fall through widening gaps.
American Medical Association (AMA) http://www.ama-assn.org
Articles published in AMA publications, including JAMA, relating to palliative, hospice, and improving end-of-life care for patients, are available through the EPERC Search option.
American Pain Society http://www.ampainsoc.org
A multidisciplinary educational and scientific organization serving people in pain by advancing research, education, treatment, and professional practice.
Association for Death Education and Counseling http://www.adec.org
The Association for Death Education and Counseling (ADEC) is a multidisciplinary organization dedicated to improving the quality of death education and death-related counseling to and care-giving; to promoting the development and interchange of related theory and research; and to providing support, and interchange of related theory and research; and to proving support, stimulation and encouragement to its members and those studying and working in death-related fields. ADEC provides opportunities for its members to develop professional identities as death educators and grief counselors while taking an active role in educating the public on death-related issues.
Center for Applied Ethics and Professional Practice http://www.caepp.edc.org/
Research and clinical practice activities focusing on improving clinical practice in bioethics, pain management, and end-of-life care.
City of Hope Pain/Palliative Care Resource Center http://mayday.coh.org
City of Hope Pain/Palliative Care Resource Center Nursing Research and Education Website, serves as a clearinghouse to disseminate information and resources that will enable other individuals and institutions to improve the quality of pain management.
End-of-Life Nursing Education Consortium http://www.aacn.nche.edu/elnec/
The End-of-Life Nursing Education Consortium (ELNEC) project is a comprehensive, national education program to improve end-of-life care by nurses, and is funded by a major grant from the Robert Wood Johnson Foundation. Major project goals are to develop a core of expert nursing educators and to coordinate national nursing efforts in end-of-life care.
Foundation Center http://fdncenter.org
The mission of the Foundation Center is to foster public understanding of the foundation field by collecting, organizing, analyzing, and disseminating information on foundations, corporate giving, and related subjects.
Grief Journal http://www.griefjournal.com/
This site gives an overview of The Grief Journal by Linda Andreozzi,in which the author offers her story as a guide to help others write their own story. Information on how to order The Grief Journal is offered.
GriefNet.org http://griefnet.org/
This web site is an internet community of persons dealing with grief, death and major loss. There are 37 e-mail support groups supervised by Cendra Lynn, Ph.D., a clinical grief psychologist, death educator and traumatologist from Michigan. The site is supported by volunteers and donations of individuals and organizations. The site offers a variety of written resources that are free of charge, as well as a newsletter. The site also provides links to other related sites. GriefNet is operated as a nonprofit corporation under the name of Rivendell Resources.
Harvard Medical School Program in Palliative Care Education and Practice http://www.hms.harvard.edu/cdi/pallcare/
Offers intensive learning experiences for physician and nurse educators who wish to become experts in the clinical practice and teaching of comprehensive, interdisciplinary palliative care, as well as gain expertise in leading and managing improvements in palliative care education and practice at their own institutions.
Health A to Z http://www.healthatoz.com
A public education website with definition and discussion about palliative care and hospice.
Hospice Foundation of America http://www.hospicefoundation.org
Hospice Foundation of America is a not-for-profit organization that provides leadership in the development and application of hospice and its philosophy of care. Through programs of professional development, research, public education and information Hospice Foundation of America assists those who cope either personally or professional with terminal illness, death and the process of grief.
National Hospice and Palliative Care Organization http://www.caringinfo.org/
Provides free consumer focused documents (e.g. Advance Directive) and other community outreach tools and resources for organizations promoting quality end-of life.
National Reference Center for Bioethics Literature http://www.georgetown.edu/research/nrcbl/
Specialized collection of books, journals, newspaper articles, legal materials, regulations, codes, government publications, and other relevant documents concerned with issues in biomedical and professional ethics.
New Hope Center for Grief Support http://www.newhopecenter.net
This is the site for the New Hope Center for Grief Support. The Center was founded by Cathy Clough, a former Hospice Director of Bereavement Services. The center offers groups for adults, children and teens, led by professionals or trained volunteer facilitators. The center's philosophy is based on Christian principles.
On Our Own Terms http://www.pbs.org/onourownterms
In depth assortment of articles written by experts in the field on end-of-life care.
Palliative Care Nursing http://www.palliativecarenursing.net
Through a partnership between the Institute for Johns Hopkins Nursing and Sigma Theta Tau International, a new website has been developed to provide nurses with access to resources for palliative and end-of-life care. This site is a work in progress - there will be many additions and improvements in the months to come.
Patient Communications http://www.patientcommunications.com
This site is dedicated to improving clinician-patient communication skills by providing tools, links and information for educators and providers.
Supportive Care of the Dying http://www.careofdying.org/
The Supportive Care of the Dying coalition develops and tests innovative projects and provides support to member organizations as they initiate systemic change in the care of persons affected by life-threatening illness.
The End of Life: Exploring Death in America http://www.npr.org/programs/death/
National Public Radio's transcript of programs in its ongoing series about death and dying in America are available on the Web site, along with a resource guide and personal stories posted by visitors to the site.
The Grief Recovery Institute http://www.grief-recovery.com/
This web site offers information on the Institute's Grief Recovery Certification Program, professional training which encompasses the principals and actions developed over the past 25 years by John W. James and Russell Friedman, the founders of The Grief Recovery Institute, Grief Recovery Personal Workshops, and books Published by The Grief Recovery Institute.
The Holistic Healing Web Page http://www.holisticmed.com/www/death.html
This site provides various links related to holistic and alternative medicine. Death Preparation and Grieving links are provided.
The National Hospice and Palliative Care Organization http://www.nhpco.org/
The National Hospice and Palliative Care Organization is the largest nonprofit membership organization representing hospice and palliative care programs and professionals in the US. The organization is committed to improving end-of-life care and expanding access to hospice care with the goal of profoundly enhancing quality of life or people dying in America and their loved ones.
World Health Organization (WHO) Programme on Cancer Control http://www.who.int/ncd/cancer/index.htm
WHO publications, documents, and abstracts related to cancer pain, terminal illness and palliative care.
Educational Videos
A Conspiracy of Silence: Helping the Patient and Family Live with Terminal Illness.
VHS 20 minutes, Video Press, $300.
University of Maryland School of Medicine, 100 Pen Street, Suite 133, Baltimore, MD 21201-1082, 1-800-328-7450.
Effective care for terminally ill patients and their families involves education about death and dying.
A Death of One's Own.
VHS 90 minutes, Films for the Humanities & Sciences, $129.00.
Films for the Humanities & Sciences, P.O. Box 2053, Princeton, NJ 08543-2053, 1-800-257-5126.
Bill Moyers explores the complexities underlying the many choices at the end of life.
A Different Kind of Care.
VHS, 24 minutes, Films for the Humanities & Sciences, $129.00
Films for the Humanities & Sciences, P.O. Box 2053, Princeton, NJ 08543-2053, 1-800-257-5126.
Bill Moyers presents important strides being made in the area of palliative care.
A Fate Worse Than Death? Dealing with Artificial Life Supports.
VHS, 50 Minutes, $145.00.
Fanlight Productions, 47 Halifax St., Boston, MA, 1-800-937-4113.
A Practical Guide to Communication Skills in Clinical Practice Buckman, R. (1999). http://www.mavc.com
This is a comprehensive communication skill curriculum, available as either CD-ROMs or videotapes. Topics include basic and end-of-life communication skills, handling emotions, genetic testing and more.
Advance Directives: Assisting Patients with End-of-Life Decisions
VHS, $229.00.
Insight Media, 2196 Broadway, New York: NY 10024-6620, 1-212-721-6316
Alternative Medicine
VHS, 29 minutes, Films for the Humanities & Sciences, $129.00.
Films for the Humanities & Sciences, P.O. Box 2053, Princeton, NJ 08543-2053, 1-800-257-5126.
A panel of experts explores alternative, or complementary, health systems that are being integrated into American culture.
Care Beyond Cure: Hospice Helping Physicians Treat the Terminally Ill - 2nd Edition.
VHS, 30 minutes, National Hospice Organization. $15.95.
NHO Store, 200 State Road, South Deerfield, MA 01373, 1-800-646-6460
Interviews with patients and physicians which help bring into focus issues like how to cope with pressures to cure, the physician's role in care team, discussing hospice with patients, reimbursement concerns, nurse-physician interaction, and more.
Caring for the Terminally Ill
VHS, 19 minutes, Films for the Humanities and Science, $89.95.
Films for the Humanities & Sciences, P.O. Box 2053, Princeton, NJ 08543-2053, 1-800-257-5126.
A Social Worker explains how terminally ill patients often feel abandoned by family members because of emotional and financial stress.
Comfort Measures at the End of Life.
VHS, 20 minutes, Video Press, $300.00
University of Maryland School of Medicine, 100 Pen Street, Suite 133, Baltimore, MD 21201-1082, 1-800-328-7450
Examines issue of physiological ramifications and basic ethical principles of withholding artificial nutrition and hydration, and involving the family in supporting and implementing decisions.
Controlling Pain
VHS, 23 minutes. Films for the Humanities, $89.95.
Films for the Humanities & Sciences, P.O. Box 2053, Princeton, NJ 08543-2053, 1-800-257-5126
Describes the complex process of pain, and the ongoing research to find ways to alleviate it.
For more information about the End-of-Life Care training modules, or to suggest additions to this page, please e-mail Dr. Jennifer Mendez at jmendez@wayne.edu.