Additional Resources

State & Federal Legislation on Advance Directives & DNR Orders:

• California Effective January 1, 2009, AB 2747 (Berg-Levine), Terminal Patients' Right to Know End-of-Life Options Act, is claimed to be the first in the nation to require doctors to provide terminally ill patients with a full disclosure of, and counseling about, all available end-of-life care options accepted in law and medicine.
• Georgia
• Illinois
• Massachusetts
• Michigan
• New Hampshire
• New Jersey
• New York
• North Carolina
• Pennsylvania
• Tennessee
• Texas
• Vermont
• Virginia
• Wisconsin
• United States

End-of-Life Nursing Education Consortium (ELNEC)
The ELNEC project is a national education initiative to improve end-of-life care in the United States. Over the next 6 months, ELNEC is providing 3 critical care courses for nurses who work in critical care areas, including dialysis units. This is a train-the-trainer program; trainers will return to their institutions equipped to train others. Social workers and other disciplines are invited to attend, except for the January 2007 course.

Questions and Answers is a document intended to educate ESRD patients and their families about end-of-life care.

Supportive Care for the Renal Patient A book edited by E. Joanna Chambers, Michael Germain, and Edwina Brown, that provides comprehensive guidance in providing palliative care to dialysis patients.

Dying Well (book) A book written by Ira Byock, MD, that provides resources for individuals facing serious illness. Dr. Byock, a palliative care expert and advocate for enhanced end-of-life care, also offers information for families and professional caregivers.

Growth House has a collection of international resources for end-of-life care. This site includes a search engine to provide in-depth resources on compassionate care for those suffering from serious illnesses.

The Alliance for Care at the End of Life, a 501(c)4 organization, was created by the National Hospice and Palliative Care Organization (NHPCO) in April of 2007 to provide a more aggressive and comprehensive advocacy voice that will serve the entire field and, ultimately, one of America's most vulnerable populations - those nearing the end of life.


National Alliance for Caregiving is a non-profit coalition created in 1996 to support family caregivers and the professionals who serve them. Its membership includes more than 30 national organizations.

National Family Caregivers Association provides services, support, and education to improve the quality of life for caregivers and families. The association offers free membership for family caregivers.

MediCaring.net is a site sponsored by the Palliative Care Policy Center, formerly known as Center for Palliative Care Studies (CPCS). This site offers a variety of resources on improving end-of-life care such as caregiver guides and research on chronic illness.

www.polst.org The Physician Orders for Life-Sustaining Treatment (POLST) Paradigm program is designed to improve the quality of care people receive at the end of life. The term POLST Paradigm is used to describe several programs, developed on a state or community-wide basis, having different program names, forms, and policies. This website maintains a posting of states that have adopted such programs.

Federal Patient Self-Determination Act (PSDA) Final Regulations On November 5, 1990, Congress passed this measure as an amendment to the Omnibus Budget Reconciliation Act of 1990. It became effective on December 1, 1991. The PSDA requires many Medicare and Medicaid providers (hospitals, nursing homes, hospice programs, home health agencies, and HMOs) to give adult individuals, at the time of inpatient admission or enrollment, certain information about their rights under state laws governing advance directives, including

1. the right to participate in and direct their own health care decisions;
2. the right to accept or refuse medical or surgical treatment;
3. the right to prepare an advance directive;
4. information on the provider's policies that govern the utilization of these rights.

The act also prohibits institutions from discriminating against a patient who does not have an advance directive. The PSDA further requires institutions to document patient information and provide ongoing community education on advance directives.

American Bar Association offers information in layman's terms about Health Care Advance Directives. It describes the Patient Self-Determination Act (PSDA) and provides useful information to consider when drafting your own document.

California HealthCare Foundation provides an article and several resources on racial, cultural, and ethnic factors affecting the quality of end-of-life care.

Understanding End-of-Life Care: The Social Worker's Role (6/30/04) and
Achieving Cultural Competence to Reduce Health Disparities in End of Life Care are online courses developed and offered by the National Association of Social Workers. Free registration is required to access these courses, and social workers can earn CEUs for participation.

Advance Care Planning Brochure Talking about their wishes can help patients and their families plan for their future care.

Dying Well (online course) is part of the Digital Imaging Advancement Productions' (DIA) Learning division. This course contains high-quality video documentary, text, and quiz components and is approved by the National Association of Social Workers-Missouri Chapter for 12 continuing education hours.