End-of-life planning may be a hot potato in Washington, but for patients, families, and their providers it’s a serious concern, emotionally, financially and medically. A new study suggests that end-of-life discussions are vital, and that informal conversations may be best, especially in terms of preparing caregivers to take on the role of surrogate decision-maker.
Family caregivers who had not discussed life support measures with critically ill patients took nearly two weeks longer to decide to stop further medical intervention than those who had prior conversations about the subject, according to research presented in a poster presentation at the Society of Critical Care Medicine Congress in San Diego.
"The absence of prior discussions about treatment preferences is independently associated with low confidence among family members to act as surrogate decision-makers and a 40% longer time to withdrawal of life-sustaining treatments," they reported.
This is the first evidence to suggest that how a doctor guides family members through the foreign territory of critical illness may influence their ability to act as surrogates, according to senior investigator Douglas B. White, MD, MAS, associate professor and director of the Program on Ethics and Decision-Making in Critical Illness, Department of Critical Care Medicine, University of Pittsburgh School of Medicine and the Graduate School of Public Health.
Researchers surveyed 230 caregivers who were making decisions on behalf of incapacitated patients on ventilators with greater than a 50 percent chance of dying from their illnesses. They found caregivers who hadn't had a prior conversation with patients about treatment preferences were less confident about making decisions and it took them 40 percent longer--33 days versus 21 days--to decide to discontinue life support.
Researchers also found that a patient’s loved ones were more confident about acting as surrogate decision-makers when they perceived their communication with intensive care physicians to be of high quality. Teaching doctors to be better communicators may be an important step in improving end-of-life decisions for patients, they concluded. Such training isn’t limited to medical school; White points out that, increasingly, clinicians are encouraged to attend communication workshops that focus on end-of-life decisions.
What’s interesting, he tells HealthLeaders Media, is how valuable informal discussions are.
Healthcare reform will provide incentives for formal advance care planning between physicians and patients, such as the completion of advance directives and living wills. But these findings indicate that informal conversations between patients and their families may be very important for both patient-centered decisions and the family member’s comfort with the tremendous responsibility of being surrogates.
"We found it interesting that informal conversations between [patients and] families appeared to be beneficial even in the setting of acute critical illness, a situation that is rarely addressed in formal advance care planning," he says. Informal advance care planning discussions between patients and families may have salutary effects on both achieving patient-centered care as well as efficient use of scarce medical resources.
"Our results support the recent calls for a paradigm shift in advance care planning toward less formal mechanisms to prepare surrogates for their role," he and his colleagues concluded.