Compassion and Support


Patients & Families

Advance Care Planning - Professionals

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Honoring patient preferences is critical to providing quality end-of-life care consistent with the individual’s values and beliefs, based on sound informed medical decision-making and evidence-based medicine.

In 1991, the federal government passed the Patient Self-Determination Act (PSDA), guaranteeing individuals the right to make health care decisions and indicate preferences regarding life-sustaining treatments. The PSDA requires any health care facility receiving federal funding to inform patients about advance directives. More importantly, patients should be counseled regarding the importance of completed advance directives. Studies have demonstrated that physician counseling markedly increases the completion rate of advance directives.

Unfortunately, advance directives have their own issues. Advance directives are not widely-utilized. The advance directive completion rate in the United States has not significantly increased since the passage of the Patient Self-Determination Act. In 1991, the year the PSDA passed, 75% of Americans approved of a living will, yet only 20% had some form of advance directives.  A 2002 study showed no improvement in the Advance Care Directives completion rate. The completion rate remained at 15-20%. Completion rates were no better for higher risk individuals. Only 20% of nursing home residents had any form of advance directive. A November 2005 poll by the Pew Research Center for the People and the Press revealed Americans are increasingly likely to plan for future health care. A recent poll performed after the Schiavo case unfolded before the nation indicated 29% of Americans have advance directives.

Meanwhile, many Americans die in pain, hospice remains underutilized and patients continue to suffer needlessly at the end of life. Research suggests a need for more comprehensive, system-based approach to ensure effective advance care planning and end-of-life decision-making.

The National Quality Forum Framework and Preferred Practices for Quality Hospice and Palliative Care outlines five preferred practices for advance care planning:
  • Document the designated surrogate/decision maker in accordance with state law for every patient in primary, acute, and long-term care and in palliative care and hospice care.
  • Document the patient/surrogate preferences for goals of care, treatment options, and setting of care at first assessment and at frequent intervals as conditions change.
  • Convert the patient treatment goals into medical orders and ensure that the information is transferable and applicable across care settings, including long-term care, emergency medical services, and hospital, such as, the Physician Orders for Life-Sustaining Treatment (POLST) Program.
  • Make advance directives and surrogacy designations available across care settings, while protecting patient privacy and adherence to HIPAA regulations, e.g., by Internet-based registries or electronic personal health records.
  • Develop healthcare and community collaborations to promote advance care planning and completion of advance directives for all individuals, e.g., Respecting Choices, Community Conversations on Compassionate Care.
Healthcare, legal and all community professionals have an opportunity and professional obligation to collaborate and make these preferred practices a reality in New York State.

To increase the completion rates of advance directives, professionals need to remove professional barriers to advance care planning discussions.

A self assessment of potential barriers to initiating conversations will help health care professionals overcome them. Consider the barriers that keep health care professionals from engaging in the process. Ask yourself the following questions:
  • Are you uncomfortable discussing death?
  • Do you believe that “accepting mortality” is “giving up hope”?
  • Are you afraid that a discussion about death will “make it happen”?
  • Are you unwilling and/or unsure how to broach the topic?
  • Do you understand the benefits of advance directives and advance care planning?
  • Are you able to find reliable resources related to advance directives and advance care planning?
  • Have you completed advance directives and shared your wishes with your family, your physician and trusted individuals?

Conversations should be based on the individual’s behavioral readiness to complete an advance directive.


Additional information is available at References  and Resources