Federal Patient Self-Determination Act

The Federal Patient Self-Determination Act requires that all Medicare-participating healthcare facilities inquire about and provide information to patients on Advance Directives; it also requires these facilities to provide community education on Advance Directives. See 42 C.F.R. § 489.102. All healthcare facilities are required to: 

  • Provide information about health care decision-making rights.
  • Ask all patients if they have an advance directive.
  • Educate their staff and community about advance directives.
  • Not discriminate against patients based on an advance directive status.


The U.S. Agency for Healthcare Research and Quality, in a 2003 article, “Advance Care Planning: Preferences for Care at the End of Life,” found the following:

  • Less than 50 percent of the severely or terminally ill patients studied had an advance directive in their medical record.
  • Only 12 percent of patients with an advance directive had received input from their physician in its development.
  • Between 65 and 76 percent of physicians whose patients had an advance directive were not aware that it existed.

Pew Research

"More Americans Discussing – and Planning – End-of-Life Treatment. The Pew Research Center, January 2006.

  • 42% of Americans have had a friend or relative suffer from a terminal illness or coma in the last five years and for a majority of these people and 23% of the general public, the issue of withholding life sustaining treatment came up.
  • An overwhelming majority of the public supports laws that give patients the right to decide whether they want to be kept alive through medical treatment.
  • By more than eight-to-one (84%-10%), the public approves of laws that let terminally ill patients make decisions about whether to be kept alive through medical treatment.
  • One of the most striking changes between 1990 and 2005 is the growth in the number of people who say they have a living will – up 17 points, from 12% in 1990 to 29% now.


Annals of Internal Medicine

Brief Communication: The Relationship between Having a Living Will and Dying in Place. Howard B Degenholtz, PhD, YonJoo Rhee, MPH, PhD; and Robert Arnold, MD. Annals of Internal Medicine. 2004; 141:113-117.

  • Having a living will was associated with lower probability of dying in a hospital for nursing home residents and people living in the community.
  • During advance care planning, physicians should discuss patients’ preferences for locations of death.

Appropriate Use of Artificial Nutrition and Hydration – Fundamental Principles and Recommendations. David Casarett, MD, Jennifer Kapo, MD and Arthur Caplan, PhD. New England Journal of Medicine. 353; 24.

  • Patients and families are often not fully informed of the relevant risks and potential benefits of artificial nutrition and hydration (ANH). In addition, financial incentives and regulatory concerns promote the use of ANH in a manner that may be inconsistent with medical evidence and with the preferences of patients and their families.
  • Because ANH is associated with uncertain benefits and substantial risks, it is essential to ensure that decisions about its use are consistent with the patient’s medical condition, prognosis, and goals for care. Therefore, decisions about ANH require careful consideration of its risks and potential benefits.