December 12, 2018

75% of end-of-life surrogates are 'extremely confident' they know patients' wishes. (They're mostly wrong.)

Daily Briefing

    Read Advisory Board's take: How providers can help patients discuss their wishes with surrogates

    Surrogates can play a vital role in patients' end-of-life care and decisions, but too often these individuals are not as prepared as they think they are to carry out the heavy task of making life-and-death decisions—and lean heavily on the patient's care team, according to a study recently published in JAMA Christopher Cheney reports for Health Leaders Media.

    Surrogates are 'overly confident' in their decision-making

    For the new study, the researchers asked 349 patients and their surrogates to rate the patient's preferences for care in the event of three health outcomes: severe pain, cognitive disability, or physical disability.

    The majority of surrogates, 75%, said they were extremely confident in their knowledge of their loved ones' preferences, but only 21% chose the same care ratings as their patient, according to the study. "Surrogates' confidence in their ability to make treatment decisions ... far exceeded and was not associated with their actual knowledge of [the patients'] ratings," the researchers wrote.

    The results were consistent with another study published in the Journal of Palliative Medicine, which revealed that 79% of surrogates said they were confident in their knowledge but only 35% actually knew the patients' care preferences.

    How providers can prepare surrogates and take the pressure off of care teams

    Surrogates who are unprepared to make the necessary end-of-life decisions present a challenge for hospitals, as they often lean heavily on care teams, which then become tasked with the "heart-wrenching struggle" of devising an appropriate care plan for the patient, Cheney reports.

    Fortunately, there's some steps providers can take to better prepare surrogates, Terri Fried, of the VA Connecticut Healthcare System and lead author of the new study, said. For instance, Fried said providers should include surrogates in advance care planning discussions.

    "Unfortunately, health care organizations can think their work is done when the patient formally names a surrogate," Fried said.

    According to Fried, hospital can implement programs to facilitate these end-of-life conversations with both patients and their surrogates. For example, Fried said the program Respecting Choices "utiliz[es] a specially trained facilitator to conduct conversations with patients and their surrogates." Though Fried noted that these programs are "probably best suited for patients with advanced illness and a high likelihood of needing a surrogate decision maker in the near future" (Cheney, HealthLeaders Media, 12/4).

    Advisory Board's take

    Deirdre Saulet, Practice Manager, Oncology Roundtable

    Over the past year, we've shared our thoughts on end-of-life care and the importance of making sure patients and the care team understand the patient's goals for care. One critical member of the care team we can't forget about: The patient’s friends and family, who will often serve as end-of-life surrogates.

    “ It's critical that providers include surrogates in discussions around care goals.”

    The data in this report is striking, and underscores the disconnect between patients and their loved ones—as well as the challenges surrogates face when making these tough decisions. What these challenges highlight, as the article mentions, is how critical it truly is that providers include these surrogates in discussions around their goals for care.

    We know that these conversations are vital to have, and that they make a difference. For instance: 

    1. In a pilot study run by the University of Rochester Medical Center (URMC), patients with advanced cancer and their caregivers met with social workers to discuss their top concerns and learn how to best raise these issues with their care team. When patients and caregivers received that coaching session, they were twice as likely to ask end-of-life questions at the next doctor's appointment.
    2. City of Hope Medical Center has developed a robust, three-step palliative care program centered on lung cancer patients. First, nurses meet with patients and caregivers to assess quality of life. Then, the nurse meets with a multidisciplinary team to discuss urgent needs and develop a plan of action. Lastly, the nurse provides education sessions to patients and their caregivers covering physical, psychological, social, and spiritual wellbeing. They've found that, not only has this intervention improved patient survival (by an average of six months) and enhanced symptom management, it's also improved caregiver quality of life.

    These case studies demonstrate two effective ways to help patients voice their fears, wishes, and priorities. Our hope is that these programs also create venues for making sure caregivers hear them.

    To learn more about these programs, how you can best support patients at the end of life, and for a list of available end-of-life-care training programs, view our research report on Improving End-of-Life Care for Cancer Patients.

    Download the Report

    Next, get URMC's end-of-life conversation prompts

    When it comes to end-of-life care, most organizations struggle to meet patients' needs. In a recent poll, 87% of Americans age 65 and older said that they believe their doctor should discuss end-of-life issues with their patients; however, only 27% of those polled had actually discussed these issues with their doctor.

    Download URMC's conversation prompts to start improving end-of-life care for patients.

    Download Now

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