By Brenda L. Mooney

Alan Makhoul, a Duke University student and volunteer at the Durham, NC, VAMC’s Hero’s Way Hospice Unit visited last year with Army Veteran Joe Bradford. Photo by Linnie Skidmore of the Durham VAMC

NEW HAVEN, CT — With a substantial number of older patients treated at the VA—more than 2 million World War II and Korean War veterans were among the patient population in 2015—how to manage their end-of-life care is an increasingly critical question.

The problem identified by a new study, however, is that few older veterans plan ahead for end-of-life medical decisions. And, even for those who do, many don’t do a very good job of communicating their preferences to family members or friends who serve as surrogates.

Previous research has demonstrated that surrogates often lack the knowledge they need to make decisions for patients, but a new study, published by the Journal of the American Geriatrics Society, is the first to examine the issue from both the patient and surrogate perspective.1

For the study, Yale University researchers interviewed 350 veterans 55 years of age or older, while separately interviewing the family members or friends chosen as surrogates by the veterans.

Treatment goals were assessed by veterans’ ratings of three health states: severe physical disability, cognitive disability, and pain, as an acceptable or unacceptable result of treatment for severe illness.

Surrogates then were questioned about whether the patient would prefer treatment, even if they were left severely impaired physically, cognitively or in severe pain. They were considered to have accurate knowledge if they correctly predicted all three responses.

Veterans and surrogates also were asked about living will and healthcare proxy completion and the level of communication about life-sustaining treatment and quality vs. quantity of life (QOL).

Results indicate that more than 40% of the pairs—veterans and surrogates—agreed that the veteran had not completed a living will or health care proxy and that there was no QOL communication. For each activity, meanwhile, 18-34% disagreed about participation.

In the pairs who agreed QOL communication had occurred, 30% of surrogates had knowledge, compared to 21% who agreed communication had not occurred and 15% who disagreed.

Researchers pointed out that, overall, only 20% of surrogates could accurately predict the patient’s wishes for life-sustaining treatment, which was only slightly better among pairs who had agreed they had communicated than those who did not agree.

The bottom line, according to study authors: “Disagreement about ACP participation was common. Agreement about communication regarding QOL was modestly associated with surrogate knowledge of treatment goals. Eliciting surrogates’ perspectives is critical to ACP. Even dyads who agree about participation may need additional support for successful engagement.”

“You can’t assume advanced care planning achieves the goal of making sure the surrogate understands what the patient wants,” explained lead author Terri Fried, MD. “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.”

The VA website already provides some guidance on advanced care planning, urging veterans to:

  • Think about the types of medical treatments you would choose to have, or refuse, if you were ill or injured and could not make those choices for yourself.
  • Choose your healthcare agent (surrogate) and talk with them about your values and choices.
  • Complete a VA Advance Directive.

It also provides some tools, including a link to the Conversation Project to help patients and their families prepare for advance care planning talks. Fried suggested that older adults and their surrogates might need extra help with planning, which could include a clinician facilitator or an internet-based tool. To that end, she and her colleagues are planning to study the effectiveness of using materials tailored to the patient, as well as the effect of conducting motivational interviews.

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

YOUR RIGHTS REGARDING ADVANCE DIRECTIVES

  1. Fried TR, Zenoni M, Iannone L, O’Leary J, Fenton BT. Engagement in Advance Care Planning and Surrogates’ Knowledge of Patients’ Treatment Goals. J Am Geriatr Soc. 2017 Mar 20. doi: 10.1111/jgs.14858. [Epub ahead of print] PubMed PMID: 28317097.