End-of-life discussions shouldn’t be saved til the end, ACPEL conference urges

The message emerging from this week’s International Society of Advance Care Planning & End of Life Care (ACPEL) conference is clear:  End-of-life issues are too often left out of the U.S. long-term care conversation.

The conference gathers clinicians, legal experts and medical ethics specialists from around the world to discuss topics including advanced illness, elder rights, advanced care planning, community involvement initiatives, and the medical and ethical responsibilities of caregivers and families of those in long-term care. This year’s Chicago venue is the first time the conference has been held in the United States.

The advanced medical technology enjoyed in the United States can be a double-edged sword, leading to extensive tests and procedures that are performed simply because the technology exists, explains Bill Silvester, director of Respecting Patient Choices, a national project in Australia designed to promote awareness of advanced directives. Physicians, given no clear instructions otherwise, will tend to choose aggressive treatment, he adds.

“Doctors are trained to preserve life, which is what we want,” Silvester says. “But people have the right to say no to aggressive interventions if they will not help them to live as they would wish.”

Avoidance is another counterproductive issue, conference  presenters insist. As the U.S. population continues to live longer, the country can no longer afford a status quo where end-of-life decisions are either postponed until they are at-large, or are not discussed at all, notes Bernard Hammes, PhD, the ACPEL conference chair and director of medical humanities and the Respecting Choices program at Gundersen Lutheran Medical Foundation, La Crosse, Wisc.

People with advanced illnesses who participate in advanced care planning are much more likely to have their wishes respected by caregivers, according to a 2010 study conducted by Silvester and published in the British Medical Journal. Likewise, the surviving family members tend to experience “significantly less” stress, anxiety and depression than those who were not involved in the advanced planning process, the report notes. But despite the Patient Self-Determination Act, many more people have thought about an advanced directive than have actually created one.

As the topic continues to be discussed at the federal level, states have grappled with the subject of informed decision-making on their own. Several states, including California and New York, have laws requiring physicians to inform patients with a terminal illness of their options for end-of-life care. Massachussettes passed a similar measure last week.

“End-of-life care and planning is something that will impact every one of us at some point,” Hammes reflects. “Unfortunately, America’s healthcare system as a whole is not well designed to provide appropriate care to those with advanced illness or support their families.”

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