One of the most important goals of advance care planning is to prepare surrogate decision-makers for their role, according to Lingsheng Li, MD, MHS, a research fellow in geriatrics and palliative care at UCSF. Yet Li and colleagues often heard the opposite from surrogates. Many admitted being entirely unprepared for the decision-making process.
“In particular, given disparities in advance care planning engagement and healthcare access, we wanted to better understand the experiences of surrogates from historically marginalized communities,” says Li. The researchers combined data from two randomized controlled trials to look at a large dataset of 422 surrogate participants from diverse backgrounds.1 Most (73%) of the surrogates were from minoritized groups, 15% had limited health literacy, and 38% were Spanish-speaking. Some key findings:
• Almost half (46%) of the surrogates reported that the patient had never discussed end-of-life medical wishes with the surrogate.
• Fifty-one percent of surrogates said that there was no formal documentation of the surrogate’s role.
• All the surrogate participants in the study were identified by the patient participant as their medical decision-maker. However, 13% of surrogates reported that they had never been formally asked by the patient to play this role. Some surrogates only become aware of their role when clinicians contact them after patients lose decision-making capacity. “One of our roles as palliative care physicians is to help surrogates navigate this process,” says Li.
• The surrogate participants reported higher confidence for decision-making in the future than actual readiness for decision-making.
This reflects previous research suggesting that surrogates overestimate their confidence in advance of facing an actual decision.2 “It is incredibly important for clinicians to help facilitate and encourage conversations regarding the patient’s goals and wishes,” underscores Li.
• Among historically marginalized participants, confidence and readiness scores were lower.
“There are a lot of barriers to advance care planning access for historically marginalized communities,” observes Li. Disadvantaged socioeconomic status, language or cultural discordance, and mistrust of the healthcare system all contribute to lack of advance care planning. “We need more language-concordant and culturally aligned interventions and community outreach programs,” says Li.
Overall, the study findings demonstrate that surrogates often are in a difficult position. Many are called on to make difficult medical decisions for others in urgent or emergent situations that leave them feeling unprepared and highly distressed. “Clinicians can encourage and remind patients to include their potential surrogates in conversations about medical planning and preferences for end-of-life care,” offers Li. The Prepare for their Care program (https://preparefortheircare.org) is one resource that can prepare surrogates to start those conversations. More than 60% of surrogate participants had accompanied the patient to a doctor’s appointment or hospital visits. “These visits are important opportunities for clinicians to talk with both the patient and the surrogate about care planning, and provide resources that help improve surrogate preparedness,” says Li.
Even with preparation, many surrogates still find it difficult to make choices about withholding or withdrawal of life-sustaining therapies. Some family members were very clear that they would not want to be intubated or remain intubated and on mechanical ventilation, “Even so, there can be a sense of extreme guilt where surrogates feel they are responsible for the patient’s death,” says Ann L. Jennerich, MD, an assistant professor of medicine at University of Washington.
Some surrogates feel pressured to make decisions about code status or withdrawal of life-sustaining therapies when they are not ready to make those decisions.
“Often, we need to give people space and time,” says Jennerich. Clinicians may have very conclusive evidence that a patient’s outcome is not going to be acceptable based on the patient’s previously expressed values. However, it might take time for a surrogate to feel comfortable moving forward with a plan that reflects those values.
“Repeatedly asking about code status or having multiple providers bombard surrogates with negative news can generate distress,” warns Jennerich. This can prevent clinicians from reaching consensus on the next best steps for the patient’s care. Jennerich tries to emphasize that even though surrogates are the ones making decisions, “we are a team.” The ethicist’s job is to help elicit information about the patient, allowing the surrogate to make the decision the patient would have wanted given the circumstances. In some cases, that means discontinuing life-sustaining therapies. The surrogate, ideally, is guided to the ethical decision in a thoughtful way. “I emphasize the importance of honoring what the patient would have wanted,” says Jennerich. “In essence, the patient is making the decision through the surrogate decision-maker.”
REFERENCES
- Li L, Barnes DE, Nouri S, et al. Surrogate decision-makers from historically marginalized populations have lower levels of preparedness for care planning. J Am Geriatr Soc 2024;72:559-566.
- Fried TR, Zenoni M, Iannone L, O’Leary JR. Assessment of surrogates’ knowledge of patients’ treatment goals and confidence in their ability to make surrogate treatment decisions. JAMA Intern Med 2019;179:267-268.
One of the most important goals of advance care planning is to prepare surrogate decision-makers for their role, according to Lingsheng Li, MD, MHS, a research fellow in geriatrics and palliative care at UCSF. Yet Li and colleagues often heard the opposite from surrogates. Many admitted being entirely unprepared for the decision-making process.
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