End-of-Life Lost in Translation

For some illnesses, the end times come slowly over a long enough period that the anxiety provoked in discussing what to do as death nears is eased and plans can be made. For some of us, end times appear suddenly, and our families left without explicit guidance frequently opt for “doing everything,” the guilt-free default. The recent study, blessedly qualitative, so there is no need to consider p-values, looks at how our surrogates interpret their role – are they advocates or decision-makers?

The findings come from a small set of in-depth interviews of surrogates caring for patients with late-stage disease, e.g., cancer, heart, lung, or kidney failure, several weeks to months after the patient had died and the surrogates had acted on their behalf. The surrogates’ demographics were not imbalanced, although only Blacks and Whites participated. Based on the interviews, the researcher categorized surrogates actions as decision-making or advocacy. Of course, as we will see, those categories are permeable, blending into one another.

When considering their decision-making role, surrogates overwhelmingly (50%) describe themselves as “making the final decision on behalf of another person,” quickly adding the patient’s inability to act independently. As a surgeon, this was what I most often heard; not surprisingly, as it turns out, most conceptualizations of “final decisions” revolve around procedures and treatments that you can see, like surgery or dialysis. I have always found it interesting that other therapies that are invisible, like adding or stopping antibiotics or life-sustaining drugs, don’t cause as much emotional turmoil.

The second most common role in decision-making (22%) was “doing what is best for the patient.” When only one option exists, this may indeed be decision-making, but in the presence of more than one choice, it blends into advocacy. There is another facet of this role that is of particular note. As one surrogate said,

“You make the best decision for that person with unconditional love and not for any benefit and it’s got to be a decision that you will not regret.”

Regret is a crucial hurdle to overcome, especially in a setting with multiple family members with differing opinions. I felt a dual responsibility to act on behalf of my patient and their family. Regret can often tear at the fabric of a family as it devolves into blame and guilt, especially when some of those family dynamics exist before these last moments.

Other conceptualizations of decision-making by surrogates were to respect the patient’s wishes or similarly be the “voice” of the patient; although here, the voice simply reflects the patient’s explicit wishes, not interpreted by the surrogate. The researchers also describe a decision-maker who finds “out all you can about the situation…and then look at benefits and disadvantages,” applying their own trade-off calculus. I think that is more a reflection of how they attempt to wall off their emotional responses; that is how I have acted in cases where I have operated and had a bad outcome in separating from my emotional attachment to the patient and my efforts.

The researchers found that surrogates described advocacy in much the same terms as decision-making but perhaps with a bit of a nudge. Here the different views were more evenly divided between “doing what was best,” “fulfilling” patient wishes, or being “a voice,” especially in situations where the patient could not or would not speak on their behalf.

Some surrogates viewed their role as “providing support,” primarily emotional and moral. To me, these individuals seemed to be the opposites of the decision-making involving trade-offs. These “supportive” surrogates led with their hearts, those looking for pros and cons, leading with their mind—two coping strategies.

Other surrogates viewed their role as asking questions, clarifying situations, and gathering information. I have seen this a great deal, and it underlies those two coping strategies providing the grist for the mills of the heart and mind. The role of asking questions is crucial, even before end-times when one spouse sees “the doctor” on a routine basis. My experience has been that wives have been far more adamant about being in the room during a discussion about their husbands than husbands during the wife’s visit. Sometimes, when we deliver unwelcome news, the patient hears just the opening sentence. Having their spouse present means someone has heard the paragraphs that follow.

The researchers conclude there is,

“…substantial variability in how spokespersons for patients with advanced illness conceptualized what it means to make a surrogate decision, with significant overlap in how they understood surrogate decision-making and advocacy.”

They use those findings to argue for better definitions of outcomes in end-of-life research. We should note their results as potential surrogates. Initiating and having end-of-life discussions is awkward and anxiety-provoking. Still, it is often less anxiety provoking than having to make unexpected choices and less regretful than simply defaulting to “do everything.”

Source: Conceptualization of Surrogate Decision-making Among Spokespersons for Chronically Ill Patients JAMA Network Open DOI: 10.1001/jamanetworkopen.2022.45608