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                                 Policy and Legislation

This page provides policy and legislation information related to care for the terminally 

ill and bereaved. If you have additional resources that you would like to have added 

to this page, please visit our Feedback Page.

You Need to Know                                                   

• Legislative Watch

• AARP

• Project on Death in America

• ABA-Commission on Law & Aging (For additional useful info, click on Legislative Updates)

• Patient Self Determination Act (1991)

American Academy of Family physicians: Policy & Advocacy

http://www.aafp.org/policy.xml

Find out what’s happening in Washington, D.C., and how it could affect doctors and patients. 

Make your voice heard.

American Academy of Pediatrics: Guidelines on Forgoing Life-Sustaining Medical Treatment.

http://www.aap.org/policy/00118.html

“Most children who become ill, even those with life-threatening disorders, recover to lead satisfying lives. Nonetheless, the course of disease may at times cause health care professionals and families to consider whether continued treatment truly represents the best option. Sometimes limiting or stopping life support seems most appropriate, especially if treatment only preserves biological existence or if the overall goal of therapy has shifted to the maintenance of comfort.”

American Pain Foundation

http://www.painfoundation.org/page.asp?menu=10&item=3&file=page_policy_intro.htm

Policy/Advocacy

http://painfoundation.org/page.asp?menu=1&item=7&file=PCPA2003_Intro.htm

National Pain Care Policy Act of 2003

American Public Health Association

http://www.apha.org/legislative/

Blumenthal and ConnPIRG Offer Checklist to Avoid Funeral Ripoffs

http://www.cslib.org/attygenl/consumer/prfuner.htm

Family Caregiver Alliance 

FCA: Policy Briefs & Reports

Public Policy

Families USA Foundation 

http://www.familiesusa.org/site/PageServer

This is a nonprofit foundation dedicated to achieving high-quality, affordable health and l

ong-term care for all Americans. The Families USA produces health policy reports, conducts 

public information campaigns, and provides training and technical assistance to state and community 

based organizations addressing health care problems.

Medicare 

http://www.medicare.gov/

(The Official U.S Government Site for People with Medicare)

The Centers for Medicare and Medicaid Services (CMS) is a federal agency within the 

U.S. Department of Health and Human Services that runs the Medicare and Medicaid programs. 

CMS site provides consumers and providers information about the program.

Public Policy Institute (PPI): End of Life Care.  

http://www.aarp.org/ppi/Articles/a2002-11-14-ppi_care.html

Last Acts is a campaign to improve end-of-life care, focused on palliative care, managing pain, a

nd making life better for individual