Search terms in quotations are provided as finding aids and refer to the location of relevant material within multi-topic websites. Terms and locations are current as of June 11, 2012 .

Agency for Healthcare Research and Quality (AHRQ)

  • “End of Life Care” subdirectory includes link to AHRQ-funded studies of advance care planning, with citations to empirical research

Alzheimer’s Association

  • helpline (1-800-272-3900) is toll-free and staffed twenty-four hours a day, seven days a week, for patients, loved ones, and professionals
  • helpline offers confidential care consultation by masters-level clinicians, and information on available services
  • website includes information on advance care planning (including financial planning), written for the person with early-stage Alzheimer’s disease
  • “Professionals” area includes practice recommendations for end-of-life care in assisted living facilities and nursing homes
  • “Facts and Figures” reports include annual data on Alzheimer’s disease and other dementia in the United States and each state

American Bar Association (ABA)

  • “Commission on Law and Aging” includes list of ABA publications on topics including “health care: decisionmaking”

Center to Advance Palliative Care (CAPC)

The Conversation Project

  • starter kit for patients and families, providing tools and tips for thinking and talking about wishes for end-of-life care

Dartmouth Atlas of Healthcare

  • key topics include “End-of-Life Care”
  • website includes datasets for key topics

Education in Palliative and End-of-life Care (EPEC)

  • EPEC for Veterans curriculum addresses relevance of combat history to care planning

End-of-Life Nursing Education Consortium (ELNEC)

  • ELNEC for Veterans curriculum addresses relevance of combat history to care planning

End of Life/Palliative Education Resource Center (EPERC)

Handbook for Rural Health Care Ethics: A Practical Guide for Professionals

  • website houses full text of the Handbook, which includes chapters on end-of-life decision-making and related topics, plus a selected bibliography

The Hastings Center

Hospice Foundation of America

  • website includes downloadable versions of HFA’s Living with Grief annual book series and other educational resources for professionals, paraprofessionals, and family caregivers

Initiative for Pediatric Palliative Care (IPPC)

  • website for interdisciplinary pediatric palliative care educational program off ers twenty-five hours of peer-reviewed and fi eld-tested instructional materials, including cases, slide sets, and films on DVD
  • topics include improving communications with patients and families, relieving pain and symptoms, analyzing ethical challenges, and responding to suffering and bereavement

Lambda Legal

  • includes “Tools for Protecting Your Health Care Wishes,” a publication off ering detailed information on advance directives (including hospital visitation directives) for LGBT patients and their loved ones

The Merck Manual Online

  • “Special Subjects” include the “Dying Patient,” written by Joanne Lynn, MD, MA, MS

National Center for Ethics in Health Care

  • “Catalog of NCEHC Material” offers publications on many topics relevant to treatment decision-making and care near the end of life, including processes
  • for ethics consultation and for surrogate decision-making for patients who lack decision-making capacity and also lack surrogates for VHA Handbooks: www.va.gov/vhapublications/

National Center for Health Statistics

  • “National Health Care Surveys” includes results of the National Nursing Home Survey, the National Hospice and Home Care Survey, and surveys of other care settings and professional and paraprofessional workforces involved in care near the end of life
  • “National Health Care Surveys” also includes summaries of survey data on topics such as the prevalence of different types of advance directives among different long-term care populations
  • “National Vital Statistics System” includes mortality data for the United States and for geographic areas within the United States

National Consensus Project for Quality Palliative Care

  • website houses Clinical Practice Guidelines for Quality Palliative Care , 2d ed. (2009)

National Guideline Clearinghouse

National Hospice and Palliative Care Organization: (NHPCO)

  • “Hospice Statistics and Research” page includes links to annual “Facts and Figures” reports on hospice utilization in the United States
  • “Caring Connections” portal includes link to state-specific advance directive forms

Respecting Choices

Physician Orders for Life-Sustaining Treatment Paradigm (POLST Paradigm)

Uniform Law Commission