End-of-life planning talks often fail to communicate goals

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Too few older adults plan ahead for end-of-life medical decisions. Even when they do identify a loved one to make decisions for them, their preferences are not always communicated or understood, according to a new study led by a Yale researcher.

The study was published March 20 by the Journal of the American Geriatrics Society.

Advance care planning allows older adults to prepare for future treatment decisions, and ideally involves a surrogate who can make decisions on the patient’s behalf. One key goal of planning is to increase the surrogate’s knowledge of the patient’s preferences. While research has shown that surrogates often lack this knowledge, no prior study has examined both the patient and surrogate perspective. 

To investigate the issue, Yale’s Dr. Terri Fried and her colleagues interviewed 350 veterans 55 years of age or older, and separately interviewed the individuals the veterans had selected as their surrogates. To gauge the surrogates’ knowledge, they asked whether the patient would prefer treatment even if that treatment would leave the patient severely impaired physically, cognitively, or in severe pain.

The research team found that overall, advanced care planning was lacking. Over 40% of the veteran-surrogate pairs agreed the veterans had not communicated their wishes with their surrogates, or completed a living will or health care proxy.

The researchers also learned that patients and surrogates frequently disagreed about whether they had communicated about end-of-life decisions. Only 20% of surrogates could predict the patient’s wishes for life-sustaining treatment. That knowledge was only slightly better among pairs who had agreed they had communicated than those who did not agree.

The data strongly suggest that surrogates must be more involved in advance care planning. “You can’t assume advanced care planning achieves the goal of making sure the surrogate understands what the patient wants,” said Fried. “Planning needs to include a facilitated discussion between the patient and the surrogate to make sure they are hearing each other and talking about things that are important to the patient.”

To that end, older adults and their surrogates may need extra help with planning, she said. That help may take the form of a clinician facilitator or an internet-based tool. Fried and her colleagues are planning to study the effectiveness of using materials tailored to the patient. They will also assess the impact of conducting motivational interviews.

“The jury is still out on the best way to help people,” said Fried.

Other study authors are Maria Zenoni, Lynne Iannone, John O’Leary, and Brenda T. Fenton.

The study was supported by the U.S. Department of Veterans Affairs Health Services Research and Development Service, and the Claude D. Pepper Older Americans Independence Center at Yale University School of Medicine.

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