Getting Better: Avoiding a Bad Euphemism

Notes from a Family Meeting is a newsletter where I hope to join the curious conversations that hang about the intersections of health and the human condition. Poems and medical journals alike will join us in our explorations.

For those of you just joining, consider starting here to trace how I’ve been thinking about medicine and technology, a conversation I’ve been returning to time and again.

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I appreciate Shunichi Nakagawa’s inspiration for this idea and collaboration on a draft of this essay.

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“Her kidneys are better today.” The resident rounding on the intensive care team stood at the bedside of a woman who was intubated, receiving antibiotics and one pressor. Although no longer a candidate for further therapy for widely metastatic cancer, her family insisted on all other interventions to sustain her life. Her husband and adult daughter nodded and smiled pensively. Her kidneys were better, and because the physician said so, this also meant she was better. They had various other questions about blood glucose, ventilator settings, and the plan for the antibiotics which the resident dutifully answered.

When sharing diagnostic, therapeutic, or prognostic information with patients and their inner circle, clinicians need to be clear, accurate, and attuned. Clarity is a function of precision, parsimony, and timeliness in communication. Information needs to be accurate, meaning it both needs to be true and also sensitive to the broader context in which others make sense of the novel data. Attunement helps clinicians respond appropriately to the patient’s emotional, psychological, and existential needs, even and especially when sharing new information. The enormous amount of data collected while someone is seriously ill is difficult to track, understand, and appreciate. Clinicians can worsen confusion and mislead when they rely on small improvements in limited metrics leading others to believe those metrics suggest the person overall is doing better. Their status as clinicians exacerbates this because patients and families read more into their words than they intend, which is how their language functions pragmatically. If the clinician declares something “better,” why should a patient and their family make any decision that would appear to thwart that (e.g., withdraw life-sustaining therapy)?

Consider a simple scale in which 0 is death and 100 is excellent health. Someone with poor but stable health might have a health status of 40. This woman upon admission to the intensive care unit had a health status of 5. Today, as the resident gives updates to the patient’s husband, the woman’s health status is a 6, because all else is unchanged apart from the kidney function. In no way should the conversation highlight that things are “better.” Such a conversation will fail to offer a clear, accurate, and attuned description of her current health, direct toward a realistic prognosis, and help her family make important decisions about her health.

There are several reasons why a clinician speak this way. First, the clinician can feel like they themselves are hurting someone else when they give bad news therefore they want to lighten the load by offering some good news, even if it is irrelevant or confusing. Although we in no way impugn the motives of the clinician, this does help them to feel better about the situation; they can be self-deceived. Second, it is true the serum creatinine, in this case, is “better” relative to its previous value, and specialization and siloing within clinical medicine encourages decontextualized assessment, prognostication, and care planning which ultimately distracts clinicians from seeing patients as whole people. Third, those things most easily measured and tracked (e.g., serum creatinine) also most easily capture attention. Fourth, latching onto something that is “better” helps assuage discomfort with uncertainty and acknowledging the possibility of dying.

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Martin Johnson Heade. “Sunlight and Shadow: The Newbury Marshes.” 1871-1875.

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What can be done differently? First, data should be incorporated into a comprehensive, evolving assessment framed in terms of different scenarios. These scenarios can describe the best, worst, and most likely possibilities given different interventions (including no disease-targeted intervention at all), incorporating the clinical data as well as the patient’s goals and values. This guards against clinician bias in an overly optimistic or pessimistic direction and couches complex medical information in a story anchored in those things that matter most to the patient. The question is not whether the kidney function is “better,” but whether this patient is overall moving closer to the best, worst, or most likely outcome, all things considered.

Second, clinicians should be intentional with the words they use in high stakes conversations. Jargon oblivion is the gap between a clinician’s self-rated skill in communication and the patient’s capacity to understand what the clinician says. This mishandling of the word “better” does not fit within any of the seven categories of jargon oblivion, though it is somewhere between a euphemism (suggesting an attempt to soften the overall picture of what is happening) and medicalized English (in which the speaker probably means something different than what the receiver hears). However, their admonition applies just as well: “If we wish to provide safe, effective, patient-centered care, we must improve our ability to communicate with patients in ways that they find meaningful.” Lessons apply here from the misuse of other phrases like settling on an overall assessment that someone is “stable” when they have been at a very poor health status in the hospital for several days, claiming “we got it all” referencing cancer surgery, “it’s not curable but it’s treatable” usually also referencing cancer treatment, acquiescing to “do everything” without further clarification, the use of euphemisms to call a dying person “sick” instead, and the uncritical claim that a patient “needs” something without further clarification of their goals of care. Seemingly straightforward statements can mislead and confuse.

Third, clinicians should acknowledge that patients and their families need more than mere information to help them make medical decisions. They need to know what that information means to them. Decision-making is a complex process involving understanding, appreciation, emotion, deep-seated beliefs, relationships with other people, trust, and many other things. Clinicians disrespect patients and families when they uncritically offer information that is not clear, accurate, and attuned.

If this patient’s husband asks specifically about the serum creatinine, the resident could rely on the suggestions summarized here and reply, “That is one marker of kidney function we track, and it needs to be put in context with everything else that’s going on. I worry that as the days go by, some numbers might get better while others get worse. My job is to look at your wife and help her overall by integrating all that information.” As the conversation goes on, the resident can continue to explore and revisit hopes and worries, clarifying the boundaries of a time-limited trial and drawing out a time to decide when the goals of care could shift. This seems to us a better way of talking about new information in serious illness.