Resources on Palliative and End-of-Life Care
Advance Directive and Advance Care Planning
Ethical Wills. A program to preserve one’s values for the next generation.
Five Wishes. A tool for advance care planning, addressing five wishes of the patient, including 1) which surrogate to choose, 2) which treatment to accept, 3) how comfortable you want to be, 4) how you want people to treat you, and 5) what you want loved ones to know.
Caring Connections. A nonprofit organization that partners with organizations to improve how people die.
End-Of-Life Care
ALZwell. Our goal is to provide information, education and support to families caring for aging loved ones, especially those coping with Alzheimer's Disease and related dementias. To that end, we provide knowledge, tools and community to help caregivers improve the quality of life for both themselves and their aging loved ones.
American Pain Foundation. The American Pain Foundation is an independent nonprofit organization serving people with pain through information, advocacy, and support.
CaringBridge. CaringBridge offers free, easy to create web sites that help connect friends and family in times of need.
Growth House - provides both provider and public information, sponsors radio programs etc. Provides a large search engine and many links.
Hoag Hospital. Provides information and help to understand and respond to the symptoms indicative of impending death.
Hospice Net. For patients and families facing life-threatening illness. Contains a number of topics to explore, such as "When as co-worker is dying."
Oregon Health Sciences University Center for Ethics in Health Care.
The Center for Ethics combines the perspectives of health professionals, patients, and families to improve teaching, research and clinical consultation about ethical issues in patient care and health policy.
Promoting Excellence in End-of-Life Care. Dedicated to long-term changes to improve health care for dying people and their families. Through the work of innovative demonstration projects and national workgroups this program strives to address particular challenges to existing models of hospice and palliative care. University of Montana.
Education
Education for Physicians on End-of-Life Care (EPEC). EPEC’s mission is to educate all healthcare professionals on the essential clinical competencies in palliative care.
End-of-Life Nursing Education Consortium (ELNEC) Project. A comprehensive national education program to improve end-of-life care in nurses.
End of Life Physician Education Resource Center. A central repository for educational materials and information about end-of-life issues, sponsored by the Medical College of Wisconsin.
End of Life: Exploring Death in America. Programs produced by National Public Radio. Transcripts, bibliographies, readings, stories, and other resources are available.
On Our Own Terms: Bill Moyers on Dying in America. Resources are divided into seven sections: End-of-Life Tools Sites, Care Options Sites, Final Days Sites, Therapy & Support Sites, Books, Journals, Newsletters, Videos, Music, and Miscellaneous.
Grief
The Compassionate Friends. The Compassionate Friends is a national nonprofit, self-help support organization that offers friendship, understanding, and hope to bereaved parents, grandparents and siblings. There is no religious affiliation and there are no membership dues or fees.
American Association of Retired Persons: Coping With Grief and Loss. AARP offers a variety of resources that were developed especially for bereaved adults, their families, friends and others to help you cope with the death of a loved one.
Patient Education
www.getpalliativecare.org. A palliative care resource created for consumers that also includes sections for medical practitioners and policymakers. It is easy to navigate and provides clear, comprehensive palliative care information to patients and families coping with serious, complex illness.
Research
Toolkit to Measure End-of-Life Care These measurement tools are designed to identify opportunities for improving medical care, examining the impact of interventions or demonstration programs, and holding institutions accountable for their quality of care. The Toolkit takes steps toward crossing this measurement barrier by creating patient-focused, family-centered survey instruments that address the needs and concerns of patients and their families, as defined by them.
Toolkit of Instruments to Measure End of Life Care. The Center for Gerontology and Health Care Research at Brown University, and faculty and staff at the Center to Improve Care of the Dying, have assembled an annotated bibliography of instruments to measure the quality of care at the end of life.
The Harborview Medical Center University of Washington End-of-life Care Research Center: This site includes instruments assessing the quality of communication about end-of-life care and the quality of dying and death. These instruments have been used to assess quality of end-of-life care for patients with critical illness as well as patients with chronic disease including chronic lung disease.
National Palliative Care Research Center (NPCRC) NPCRC is a national initiative committed to stimulating, developing, and funding palliative care research directed at improving care for patients with serious illness and their families. Located at the Mount Sinai School of Medicine in New York City where it receives direction and technical assistance, the Center will solicit research proposals from investigators throughout the United States
National Organizations
American Academy of Hospice and Palliative Medicine. A resource for physicians and caregivers in hospice and palliative care, pain management and education.
American College of Physicians-American Society of Internal Medicine. A series of articles about end-of-life care developed by the ACP-ASIM End-of-Life Consensus Panel.
American Hospice Foundation. Links to hospice sites, articles, and publications on grief and End-of-Life Care courses, and workshops.
American Society of Law, Medicine & Ethics ("ASLME") ASLME provides scholarship, debate, and critical thought to the community of professionals at the intersection of law, health care, policy, and ethics.
Association for Death Education & Counseling. ADEC is one of the oldest interdisciplinary organizations in the field of dying, death and bereavement. The almost 2000 members are made up of a wide array of mental and medical health personnel, educators, clergy, funeral directors, and volunteers. ADEC offers numerous educational opportunities through its annual conference, courses and workshops, its certification program, and via its newsletter, The Forum.
Center to Advance Palliative Care. A resource at Mount Sinai School of Medicine, New York, for hospitals and health systems interested in developing palliative care programs. Features guidelines from JCAHO, National Consensus Project and others. Also provides tools for palliative care programs in the areas of billing, documentation, marketing, and financial analysis.
National Family Caregivers Association. NFCA is predicated on the belief that caregivers that choose to take charge of their lives, and see caregiving as but one of its facets, are in a position to be happier and healthier individuals.
National Hospice and Palliative Care Organization. Founded in 1978, the National Hospice Organization is the oldest and largest nonprofit public benefit organization devoted exclusively to hospice care. A site for professionals interested in hospice and palliative care with multiple end-of-life and palliative care resources and educational material.
Hospice & Palliative Nurses Association. HPNA is the nation's largest and oldest professional nursing organization dedicated to promoting excellence in pain management and end-of-life care.
These links are provided as additional resources for our Members and other users. No endorsement by the American College of Chest Physicians is intended or implied.
The ACCP does not support assisted suicide or euthanasia.
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