Other studies have examined surrogate decision making.33–36
Unlike these, we examined the relationship of race and ethnicity on the experience of surrogate decision making and used a purposive sampling strategy to include equal numbers of African American, Caucasian, and Hispanic surrogates in separate focus groups led by race-concordant moderators. None of these previous studies used such a strategy or made the relationship of race/ethnicity on surrogate decision making their primary focus. A few other studies have focused on the decision-making experience of racially and ethnically diverse surrogates deciding for seriously ill patients, but rather addressed their treatment preferences7
or problems with health care provider communication.27
The dominant theme in our analysis is the tremendous burden of decision-making surrogates experienced that transcended race/ethnicity. Surrogates reported feeling burdened in their expected role in medical, personal, and family domains. In the medical domain, burden appeared to vary directly with uncertainty about outcome and patients’ preferences. In the personal domain, surrogates reported fearing the loss of a loved one and feeling the weight of responsibility for such an outcome. In the family domain, surrogates reported making decisions that both left them open to criticism from other relatives and affected other relatives’ lives. Burdens in these three domains can become synergistic, compounding the challenges of surrogate decision making. Responses to these burdens can vary by race and ethnicity, especially in the context of religious beliefs about God’s power and the limits of medicine.
Others have pointed out the burden of surrogate decision making.37,38
We go further and describe two apparent contributors to the creation of such burden, uncertainty of prognosis, and uncertainty about the patient’s wishes. Our data also suggest that the multifaceted burden of surrogate decision making is an insufficiently appreciated challenge to surrogates and their physicians. Physicians could make changes to assist surrogates in their decision making. Improved physician–surrogate communication, in particular, the longer time that physicians can spend with surrogates in family conferences,39
and changes in the organizational culture of health care institutions could alleviate some of these burdens. For example, for some surrogates, offering a trial of intervention might be a helpful and underutilized strategy for making the decision-making burden more manageable, but only if surrogates have a clear understanding that they can stop interventions once begun as some of our participants believed they lacked that authority. The American College of Critical Care recently issued guidelines to support the family in the intensive care unit40
suggesting staff training to recognize and respond to family members’ stress. Our study adds the important insight that staff should appreciate such stress may be owed to the uncertainty about prognosis and the patient’s wishes and that such burden of decision-making-induced stress may transcend ethnicity and culture.
Many of the study participants appeared to perceive that decision making using the substituted judgment standard was not making a decision at all, but merely reporting a decision already made by the patient. The surrogates were willing to fulfill the role of reporting a decision already made, because they were not responsible for making a decision that would result in (although not necessarily cause) the death of their loved one.
While our identified themes applied to all races/ethnicities, responses to burdens of decision-making varied by race and ethnicity. For example, African American surrogates emphasized faith and spirituality more than any other group as major resource upon which they relied. It is worth noting that the alternative of nonintervention is sometimes not experienced as a viable option. Therefore, the phrase “making a decision” does not capture the experience of surrogates in such situations as some surrogates noted they did not understand themselves to have a choice in the matter. Religiously or spiritually based requests to “do everything” in end-of-life treatment should be explored with surrogate decision makers with this aspect in mind and not be prejudged as “unreasonable”.41