V Selected Resources on Advance Care Planning and End-of-Life Care
This chapter includes selected resources on advance care planning (ACP) and end-of-life (EOL) care, including selected state and national initiatives, professional associations, books, and journals, as well as items of general interest. It is not intended to be inclusive but rather to point to a growing array of resources currently available on EOL decision making and care. Readers should be aware that web links are subject to change.
Aging With Dignity
Resources, action, and advocacy to promote better care at EOL. Promotes “Five Wishes,” a popular guide to communicating about EOL care and preparing advance directives (ADs). Documents translated into 24 languages. Includes Voicing My Choice: A Planning Guide for Adolescents and Young Adults, a guide to help young persons living with serious illness communicate their preferences.
agingwithdignity.org American Bar Association
Consumer's and Lawyer's Tool Kits on ACP, emphasizing conversations with clients. Includes a Proxy Quiz to assess the agent's knowledge of the principal's wishes.
Americans for Better Care of the Dying
Dedicated to improving EOL care, including building momentum for reform, exploring new models and systems for delivering care, and shaping public policy through evidence-based understanding.
A program of the National Hospice and Palliative Care Organization (NHPCO); national consumer and community engagement initiative to improve care at the EOL. Has provided more than 1.3 million ADs to individuals free of charge since 2004. Links to download ADs for each state.
Caring Conversations (Center for Practical Bioethics)
Provides a booklet and other resources designed to help guide individuals and families through the process of ACP.
Center to Advance Palliative Care (Robert Wood Johnson Foundation)
Palliative care tools, education, resources, and training for health care professionals.
Centers for Disease Control and Prevention
Information on ACP; online course for professionals. cdc.gov/Features/AdvancedCarePlanning
Coalition to Transform Advanced Care
Promoting best practices in care for advanced illness. Education for the public and professionals, creating policy change.
Compassion and Choices
Provides education and advocacy to change attitudes, practices, and policies to assure patients' rights and provide choices related to EOL. Chapters throughout the United States.
Consider the Conversation
One-hour video produced by Rainbow Hospice Foundation (Jefferson, Wisconsin) that promotes communication about EOL choices. Links and resources, including podcasts on conversations about EOL.
The Conversation Project
Collaboration including columnist Ellen Goodman, the Institute for Healthcare Improvement, and other leaders to encourage conversations about dying, death, and EOL care. Provides a “Starter Kit” to facilitate conversation and features real-life stories of persons dealing with death and dying.
Initiative of the Institute for Healthcare Improvement to give health systems and providers the skills to communicate with patients and families about EOL preferences and to document and carry out their wishes.
Website for Dr. Ira Byock, author and palliative care physician. Includes free “Assessment and Outcome Measure for Palliative Care,” which helps assess quality of life for persons experiencing life-threatening illness.
Education in Palliative and End-of-Life Care
Develops curricula and training products, including distance learning, in palliative and EOL care.
epec.net End-of-Life Nursing Education Consortium (ELNEC), American Association of Colleges of Nursing
National education initiative to improve palliative care. The project provides undergraduate and graduate nursing faculty; continuing education providers; staff development educators; specialty nurses in pediatrics, oncology, critical care, and geriatrics; and other nurses with training in palliative care so they can teach this essential information to nursing students and practicing nurses.
Five Wishes Online
Step-by-step guide for completing an AD using popular “Five Wishes” model; initiative of Aging with Dignity.
Hospice Foundation of America
Discussion and explanation of ACP and documents. hospicefoundation.org/advancecare
International Palliative Care Initiative (Open Society Foundations)
List of International Palliative Care Initiative Grants. opensocietyfoundations.org/about/programs/public-health- program/grantees/international-palliative-care-initiative-grants-0
Institute of Medicine
Has convened Committee on Transforming End-of-Life Care to examine the current state of EOL care with respect to delivery of medical care and social support; patient–family–provider communication of values and preferences; ACP; health care cost, financing, and reimbursement; and education of health professionals, patients, and their loved ones.
Life and Death Matters
Teaching resources, online newsletter, and online training and courses in hospice and palliative care.
Making Your Wishes Known (American Geriatrics Society)
Provides guidelines for legal and ethical decision making, including ACP. healthinaging.org/making-your-wishes-known MediCaring Project
Working to improve the health care system for people living with serious and chronic conditions. Includes Action Guides for care transitions.
Project on Death in America (Open Society Foundations)
Report on Project on Death in America, 2001–2003.
Talk Early Talk Often
Website of Rev. Dale Susan Edmonds on dealing with aging parents, including talking about EOL decision making.
Your Life Your Choices (Veterans Affairs Health Services Research and Development Service)
Comprehensive booklet and planning guide for future medical decisions. innovations.ahrq.gov/content.aspx?id=795