Senate Special Committee on Aging Holds Hearing on Advance Care Planning
July 17, 2013 07:57 AM
The Senate Special Committee on Aging recently held a hearing entitled “Renewing the Conversation: Respecting Patients’ Wishes and Advance Care Planning.” The hearing was held to examine the role of the Federal Government in encouraging individuals to talk about end-of life care preferences with their families, loved ones and health professionals.
The hearing’s witnesses were: James Towey, Founder, Aging with Dignity and President, Ave Maria University; Harriet Warshaw, Executive Director, The Conversation Project; Gloria Ramsey, RN, Associate Professor, Uniformed Services University of the Health Sciences; Amy Vandenbroucke, Executive Director, National Physician Orders for Life-Sustaining Treatment Paradigm Task Force. The National Association of Home Care & Hospice (NAHC) attended the hearing and recently published an article, “Considering the Conversation: How do We Want it to End?” in the April 2013 issue of CARING Magazine that also relates to this topic.
The witnesses all emphasized a common theme during the hearing – that physicians, patients and their families should routinely engage in dialog about plans for end-of-life care to ensure that the patient’s preferences are known and that a proper plan of care can be implemented. Conversely, the witnesses emphasized that a lack of participation, planning or communication with respect to end-of-life care often leaves spouses, loved ones, or a proxy with emotional anguish and the stress of making vital medical decisions in times of need without knowing all of the patient’s preferences or care options.
Senator Susan Collins (R-ME), the Committee’s Ranking Minority Member, mentioned in her opening statement that 93 percent of Americans feel advanced care planning should be a priority, but only a small fraction of adult Americans have actually completed an advanced directive. “We are making some progress in meeting the wishes of those at the end of their lives. More people over 65 are dying at home and in hospice care, and fewer are dying in hospitals,” said Collins. “While most Americans say that they would prefer to die at home, studies show that the vast majority still die in institutions where they may be in pain, and where they may be subjected to high-tech treatments that merely prolong suffering.”
Committee Chairman Bill Nelson (D-FL) concurred with Senator Collins – stating that only 29 percent of people report having end-of-life planning in their will. Senator Nelson suggested that “one option would be for the Centers for Medicare and Medicaid Services (CMS) to revisit its decision to remove advance care planning as something that could be reimbursed as part of the Medicare’s new annual wellness provisions.” Another suggestion Senator Nelson has was “for the Department of Health and Human Services to update research on advance directives, which was last done under the Bush Administration.”
Senator Nelson expressed his strong personal support for hospice care based on his own experiences seeing many of his family members utilize hospice services at the end of their lives.
Senator Collins mentioned in her opening statement her ongoing work and interest in end-of-life issues, referencing a bill that she introduced with Senator Rockefeller (D-WV) in 1997 entitled the “Advance Planning and Compassionate Care Act.” That bill would have facilitated dialogue about end-of-life issues and encouraged advance care planning by requiring every Medicare beneficiary receiving care in a hospital, nursing home, or other health care facility to be given the opportunity to discuss end-of-life care - and the preparation of an advance directive - with an appropriately trained professional within the health institution.
During the hearing Mr. Towey advocated for an advance directive called Five Wishes, which is produced by Aging with Dignity. He stated that Five Wishes is in circulation around the world in 27 different languages among 35,000 partner organizations, including places of worship, hospitals, health systems, hospices, and other groups. Towey stated that Five Wishes is a tool that helps bring advance care planning out of the emergency rooms and into family living rooms to allow people to make important medical decisions on their own terms.
Amy Vandenbroucke, who testified on behalf of the National POLST Paradigm Program, noted the key differences between a POLST form and an advance directive in that a POLST form is a medical order rather than a legal document and is only intended for use by those with advance illness or frailty at any age, while an Advance Directive is for all competent adults over the age of 18, among other things.
Harriet Warshaw spoke of the Conversation Project’s national public engagement campaign to create a cultural paradigm shift so that it is no longer taboo for families and health care providers to engage in end-of-life conversations. One of the ways they intend to do this is by offering families a “Conversation Starter Kit.” Warshaw stated that 56 percent of adults in America have not communicated end-of-life wishes to their loved ones.
For more on this topic, a digital copy of the article “Considering the Conversation: How do We Want it to End” can be found by clicking here.
To watch the Aging Committee hearing on Advance Care Planning, or to read the materials submitted for the record, please click here.