Conversations with families of critically ill patients

Models of medical decision making

Physician-patient or physician-surrogate involvement in decision making regarding life-sustaining treatments can be conceptualized on a spectrum, with parentalism at one end, autonomous decision making at the other, and shared decision making in between. Shared decision making describes a relationship in which information is passed back and forth between physician and patient or surrogate, and both parties share opinions about treatment choices before a decision is jointly reached. There is a consensus among multiple critical care societies in Europe and North America that shared decision making should be the default model for physician-patient and physician-surrogate decisions regarding continuing, withholding, or withdrawing life support in the ICU setting. ^, Although most patients and family members prefer a shared decision-making approach, there is considerable heterogeneity among patients and families with regard to their desired level of decision control. In the interest of patient- and family-centered care, it is imperative to individualize one’s approach. One study showed that American physicians use the full spectrum of decision-making models but do not routinely assess the surrogates’ desired level of involvement in medical decision making: rather than individualizing their approach to match surrogate preferences, individual physicians often have one approach that they use with all surrogates.

Surrogate decision makers

The experience of family caregivers and surrogate decision makers is undeniably challenging. Surrogates struggle with emotional conflict and competing values, attempting to honor the wishes of their loved one, meet their own psychological needs, and promote harmony within the broader family. Caregivers are often under tremendous stress and have higher rates of psychological symptoms than the general public. Specifically, the prevalence of anxiety and depression symptoms in family members of critically ill patients is remarkably high, ^, and the symptoms of posttraumatic stress have been shown to be present in a majority of family members of critically ill patients.

In addition to the affective difficulty inherent in coping with a sick loved one, surrogate decision makers are asked to participate in complex medical decision making with which they may have very little prior experience. One study showed that 82% of family members who were asked to participate in medical decision making demonstrated symptoms of posttraumatic stress 90 days after patient discharge or death. Communicating clearly about the goals of care and the withdrawal of life-sustaining interventions, in addition to exploring patients’ and families’ wishes, can contribute to family support and satisfaction. Interprofessional family support interventions involving regular family conferences and emotional support in between meetings have been shown to improve surrogate ratings of communication quality and patient-centered care and a reduction in ICU length of stay.

Though clinicians may be familiar and comfortable with the fast pace of ICUs, the tempo of medical decision making can pose a particular challenge to surrogate decision makers. One study showed decreased family satisfaction associated with a longer ICU stay, but also showed increased satisfaction when the process of withdrawing life-sustaining interventions was prolonged, suggesting family members may need time to adjust. This indicates that families may benefit from time to come to terms with medical decisions and their personal feelings of loss.

Substituted judgment and best-interest standards

Substituted judgment is upheld as the highest standard for surrogate decision makers. ^, In the absence of an existing and specific healthcare directive, clinicians ask that surrogate decision makers imagine what the patient would want were they able to participate actively in decision making. Despite widespread endorsement of the substituted judgment standard by the medical community, ethical and practical concerns have been raised, including the fact that patients frequently change their minds regarding medical decisions and preferences, making an estimation of a patient’s wishes more difficult. This is especially true among patients who have not completed an advance directive. That said, though many patients evolve and change with regard to treatment preferences, most studies evaluating preference stability have shown that a majority maintain consistency in their wishes regarding medical decisions, ^, particularly patients who have engaged in advance care planning and those who are seriously ill.

Some authors have raised concerns about the accuracy with which surrogate decision makers can predict what choices patients would make. A meta-analysis by Shalowitz and colleagues found that surrogate decision makers were 68% accurate in their predictions regarding patient treatment preferences. In cases in which surrogates are inaccurate in substituted judgments, their stated preferences on behalf of the patient more closely represent their personal beliefs about end-of-life care. ^, A majority of seriously ill and older patients prefer to defer complex decision making to their physicians and family rather than having their advance directive strictly followed, perhaps reflecting the understanding that it can be difficult to imagine what one’s preferences might be given the many variables and perhaps unimaginable subjective experience of being critically ill.

Although there is significant variability in the amount of decisional leeway that patients would like their designated surrogates to have, the majority of patients prefer the implementation of a substituted judgment standard over the best-interest standard. Furthermore, there is heterogeneity in the factors weighed by surrogates in medical decision making, including substituted judgment, but also factors such as shared experiences with the patient and the personal values and preferences of the surrogate decision maker. ^, Most of the time, clinicians do not explicitly frame the roles and responsibilities of surrogates. Although this is a complex issue, substituted judgment should be a preferred standard for decision making when possible. By using phrases such as “Your role is to bring the voice of [the patient] into the room. What do you think they would say if they could be a part of this decision today?,” the more abstract principles of substituted judgment can effectively frame a surrogate’s responsibility.

Role of advance directives

The absence of an advance directive has been identified as a barrier to effective end-of-life care in the ICU setting, although significant and valid concerns have been raised as to their usefulness and relevance. Advance directives were not widespread in the past, with some prior studies describing rates of advance directive use between 5% and 11%. More recent data suggest that about a third of patients in the United States have completed some type of advance directive. Although advance directives have not consistently been shown to change the type of care provided to dying patients, ^, some studies have shown that the presence of an advance directive is associated with higher family assessment of the quality of the dying process for patients in the ICU, greater use of hospice, improved communication, an increased frequency of do not attempt to resuscitate (DNAR) orders, and better quality of life in the final week of life. Advance directives can be helpful to surrogate decision makers, lessening the burden involved in attempting to employ accurate substituted judgment. Importantly, advance directives should be completed as part of a process of advance care planning that allows patients, their family members, and clinicians to explore the patient’s values, goals, and preferences before documenting those preferences in an advance directive. Therefore although more progress needs to be made in the role advance directives play in guiding end-of-life care, there is value in advance care planning for those patients who ultimately require critical care.

Importance of family conferences for all critically ill patients

Robust communication among clinicians (physicians, nurses, and other clinicians) and families of all critically ill patients is important, not only for families of patients who are imminently dying. Family members who felt that communication in the ICU was inadequate were at higher risk for posttraumatic stress disorder, even those with loved ones who survived their ICU stay. Furthermore, families of patients who survived their ICU stay are actually more likely to be dissatisfied with their ICU care with respect to domains such as inclusion in decision making, communication, emotional support, and respect and compassion shown to family, in addition to the consideration of family needs.