Language Matters, especially with end-of-life care

While I strongly support the need for more thoughtful approaches to end-of-life care with an emphasis on personal autonomy and medical care providers eliciting and honoring an individual’s wishes in how that care is undertaken, as a retired physician living with a disability and an advocate for disability rights I was struck by the labeling used in this New York Times piece. And, perhaps the most concerning is the apparent lack of awareness of the author or the editorial staff to the issue.

Within the community of differently-abled people (a term I prefer to “disabled”), we have experienced the damage that semantics and labels can do. “Handicapped”, “deaf and dumb” and “retarded” are but a few of the pejorative labels used both in the past and even now.

The sentiment that an individual needs to be treated not as a thing defined by the label of a condition they have but as the individual they are is a trend in most areas of our society. Medical practice is an arena in which this progressive thinking is lagging.

For me, the most impactful part of the article was the personal story the article began with. However, it is telling that the term “patient” gets used at least ten times after the ninth paragraph. In fairness, some of those were direct quotes from researchers and physicians but many were not.

End-of-life care is an issue of concern to many who do not identify themselves as “patients”. “Patient” is a label used by health care providers when directly referring to individuals under their care but the use of the term in this context should not leak other contexts.

Further, what does being a patient mean? Who amongst us has never been a patient? Most of us have been “patients” even before birth when our mothers sought prenatal care and then when we went to see our pediatrician and so on.

So, why is the term “patient” used so freely as if it actually means something specific? I would suggest that it is a label that serves little purpose for the lay public.

For instance, the third to last paragraph of the article starts, “Some patients want every possible action taken to extend their lives, even briefly” [emphasis added]. Why is that wording any more informative or exact than, “Some individuals want every possible action taken to extend their lives, even briefly.”

Labels can harm. Personally, I am not a “patient” to anyone other than my medical caregivers, just as no disease process or disability type defines me as a person.