Improving Decision-Making in ICUs

Scholar: Douglas B White, MD, MAS

Each year 500,000 Americans die after decisions are made to forego medical intervention.  Greenwall Faculty Scholar Dr. Douglas White’s research has shown how to improve decision-making for patients on breathing machines who cannot make decisions for themselves.  These decisions are emotionally difficult for families and health care workers.

 Dr. White's research has illuminated how family members think about a patient's prognosis.

Dr. White and his team analyzed actual discussions between physicians and family members of ICU patients.  Even when relatives understand physicians’ estimates of the patient’s prognosis, their own estimates of prognosis may differ sharply. In estimating prognosis, relatives rely not only on the physician’s advice but also on the patient’s strength of character, will to live, unique medical history, physical appearance, and on their own optimism, intuition, and faith. Moreover, family members may believe that their presence at the bedside improves prognosis. Thus, doctors trying to improve communication about prognosis cannot just simply provide clearer information but must also address the relatives’ emotional and psychological needs.

A doctor discussing a patient's prognosis with relatives must address their emotional and psychological needs.

Families value physicians’ estimates of the patient’s prognosis, even though they also take other factors into account. Eighty-seven percent of family members want physicians to discuss prognosis even if it is uncertain. Family members believe that prognostic uncertainty is unavoidable and that discussing uncertainty leaves room for realistic hope, increases their trust in the physician, and prepares them for possible bereavement. Moreover, 93 percent of relatives believe that it is inappropriate to withhold information to maintain hope.  Instead, they believe that timely discussion of prognosis allows family members to prepare for a patient’s possible death.

 Dr. White has identified a role for physicians in the ICU that had not been previously described.

In the facilitative role, the physician does not provide a recommendation, but instead coaches the family through the decision-making process, focuses their attention on key trade-offs, summarizes and reflects back to families their statements about the patient’s values, and helps them apply these values to the decision. This role allows physicians to use their medical expertise to guide surrogates while still relying on surrogates to articulate the patient’s values. This work earned Dr. White the 2008 Outstanding Research award in Bioethics from the Society for Critical Care Medicine and is being used by other NIH-funded investigators to study decision-making in other domains of medicine. 

Families vary in their desire for an ICU physician to make recommendations about treatment.

Dr. White found that families varied in their desire for the ICU physician to make recommendations about treatment. Fifty-six percent of surrogates preferred to receive a recommendation, believing that it ‘‘took some pressure off’’ families and meant that ‘‘the burden of the final decision isn’t completely on the surrogate.’’ In contrast, 42% preferred not to receive a recommendation from the physician, believing that it could hinder the family’s ability to reach the best decision. These findings suggest that the physician should ask surrogates whether they wish to receive a recommendation regarding life support and should be guided by their preferences.

Dr. White characterized decision-making practices for ICU patients who cannot make decisions for themselves, have no relatives or other surrogates, and have not indicated their preferences for life-sustaining interventions. This group accounts for approximately five percent of ICU deaths but presents very difficult ethical dilemmas. The research revealed that physicians’ actual decision-making practices diverged substantially from state laws and professional society guidelines.

Support from the Greenwall Foundation allowed Dr. White to develop innovative policy solutions to ethical dilemmas

In addition to his empirical research on bioethics, Dr. White has written articles recommending how ethical dilemmas should be resolved. Drawing upon empirical studies, he argues that physicians generally should not make unilateral decisions to forego “futile” or “inappropriate” interventions. Such judgments about futility are commonly inaccurate or inconsistent. In addition, his own work has shown that families base their decisions on many factors other than the physician’s predictions of prognosis. Thus Dr. White argues that physicians generally should discuss “futile” interventions with patients or surrogates, in the context of the patient’s values and goals. In most cases the family agrees to forego the interventions. Such discussions can be facilitated by palliative care specialists, ethics consultants, or hospital ethics committees. Dr. White also suggests that courts have valuable role to play in some cases involving futile interventions.

The Greenwall Foundation provided time for Dr. White to think through the ethical and policy implications of his empirical studies of decision-making in ICUs. Discussions at Faculty Scholars meetings helped him sharpen his ideas, particularly regarding philosophical and legal issues related to his work. Some of these discussions developed into formal interdisciplinary collaborations.