Why do families have different expectations at the end of life than physicians?

I have a friend who is a funeral director. I am a family physician. One of the things that we have in common is that we both deal with death and dying and how families deal with the death of a loved one. The other day he was wondering out loud why families call the ambulance service when their loved one is clearly dead, and we talked about the difficulty that we all have in accepting the reality of the death of those that we love.

The most common ethical issues in clinical medicine relate to end-of-life decision-making. It has been estimated that nearly half of adults near death in the US were unable to make decisions for themselves about life-sustaining treatments.(Silviera) This leaves the responsibility for making end-of-life decisions to family members or other surrogate decision-makers. This can be a problem if family members have difficulty accepting the reality of the impending death of their loved one.

A recent article in JAMA by Douglas White et al. looked into some of the thought processes that are going on when surrogate decision-makers have a different understanding of a patient’s prognosis than the involve physicians. They studied a series of patients who were being treated with ventilators in an ICU and had APACHE II scores that indicated at least a 40% risk of inpatient mortality whose decisions were being made by a surrogate decision-maker. They asked both the physicians and surrogate decision-makers to estimate the chances of the patient surviving the hospitalization. In over half of the cases (122 of 229) there was more than a 20% difference in the estimate of survival. In order to look at some of the thought processes impacting this difference they ask this surrogate decision-makers to say what they thought the physician would say the chance of survival was and what they believed the chance of survival to be. By doing this they tried to distinguish the difference between misunderstandings by these surrogate decision-maker of the physicians’ assessments of prognoses and differences in beliefs about patients’ prognoses.

Out of the 122 instances of discordance, 65 were related to both misunderstandings by surrogates and differences in belief about prognosis, 38 were related to misunderstandings only, seven were related to differences in belief only, and data were missing for 12. I find it interesting that in well over half of these cases the surrogate decision-maker estimated the likelihood of survival as being different from what the surrogate decision-maker perceived the physician to think the likelihood of survival to be. The investigators asked 71 surrogates who had more optimistic estimates of survival then the physicians why they were more optimistic. The most common reasons were a need to maintain hope to benefit the patient (34), a belief that the patient had unique strengths unknown to the physician (24), and religious belief (19).

The reasons these surrogate decision-makers gave for having more optimistic estimates of survival are interesting, but my own experience with family members of those who are dying is that they commonly are struggling with accepting the reality of their loved ones impending death and at times are in denial of that reality. It would be difficult to evaluate how much denial of the reality of impending death was a source of increased optimism since that is not something that a surrogate decision-maker would be able to self-report. Those of us who work with the dying and their families need to recognize the difficulty that families have inaccurately understanding the likelihood of death and incorporate that in our compassionate care for both our patients and their families.

Silveira MJ, Kim SY, Langa KM. Advance directives and outcomes of surrogate decision making before death. N Engl J Med. 2010;362(13):1211-1218.
White DB et al. Prevalence of and Factors Related to Discordance About Prognosis Between Physicians and Surrogate Decision Maker of Critically Ill Patients JAMA. 2016;315(19):2086-2094.

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