The problem with patients

1234929_10153173963320487_1299285971_nA recent guest column in my favorite medical blog, KevinMD, was written by patient advocate and former medical reporter Pat Mastors. She blogs here. Her column, “We need a new word for patient”, is all about the terminology – specifically, terminology used to refer to people partnering with healthcare professionals to discuss their health problems. You can find the KevinMD column here.

People partnering with healthcare professionals. Hmmm. I could call them PPHP, for short, but this is far too close to the acronym for my personal favorite example of medical terminology – pseudopseudohypoparathyroidism – also called PPHP for short. That’s almost as confusing as the name of the disease. So I’ll just call people partnering with healthcare professionals to discuss their health problems patients for the moment. Which would not be cool with Pat Mastors.

What’s wrong with patient? A recent editorial by the marvelously named Dr. Hem, in a Norwegian medical journal, sums up the usual criticism this way [English language version on site]: “Others have pointed out that the concept of patient is historically charged. Previously, the treatment of patients was characterised by paternalism – an omniscient, imperious doctor and a passive, obedient patient; the archetype of a power disequilibrium.”

Pat Mastors similarly argues: “Why is “patient” not le mot juste? Because it means “one that is acted upon” (Merriam-Webster), and its origin means “one who suffers” (I don’t know about you, but my friends would not describe me that way.)” And the Norwegian Dr. Hem goes on in the same vein: “The current ideal is the knowledgeable and active expert patient who imposes requirements on his/her doctor … It can be claimed that the new patient role is so different from the old one that the concept of patient should be done away with altogether …”

Sociolinguistics 101: Language has power. We have seen a similar evolution in discussing what patients do. In the “old” model referenced by Dr Hem, patients always did what their doctors told them. If they did not, they were “bad patients”. “Bad” is a little crude, though, so they were described as noncompliant. Over time, an attempt was made to move towards a participatory model of care, and terminology moved along with it. Adherence, as in “adherence to treatment”, became the favored word. At least, in theory. Has that solved the terminology problem? Not according to JM Bissonnette, who in 2008 published a concept analysis of the terms adherence, nonadherence, and treatment refusal as found in the literature of medicine, nursing and allied health. In 114 papers, “no distinct differentiation” was found between adherence and compliance. The synonymy is apparently complete. But Bissonnette still takes the field(s) to task for adopting a healthcare-professional-centric view: “No definition of adherence exists that reflects a patient-centred approach, the dynamic nature of adherence behaviour and the power imbalance implied by these terms.”

Physicians – and nurses – are damned if they do and damned if they don’t, by Bissonnette’s logic. In my humble opinion, this is because there will always be a power imbalance in situations where one party to a conversation knows something the other one doesn’t. As a person who did not drive an automobile until the age of 35, I am mildly clueless about cars, and if Jiffy Lube Guy suggests that my car has a cracked veeblefetzer and requires major surgery, I am very likely to believe him. That’s a power imbalance. It does not mean I feel particularly inferior to Jiffy Lube Guy in a cosmic sense. But he’s totally in control of that conversation. That’s fine. That’s why I brought him my car in the first place.

It may not be obvious that power imbalance in healthcare communication cuts both ways. As readers of this blog know, I am fascinated by symptom expressions – verbal or text-based, as in my PatientsLikeMe paper.

Why? Because this is the part of the healthcare conversation in which the patient is in complete control. No care can actually take place until the patient has revealed why they are seeking treatment. In fact, in my exhaustive review of 19th-century medical records, I found the physician catchphrase “What brings you here today?” expressed in documents as old as 1888. It’s the healthcare conversation starter because without a response to that question, the physician is completely stymied. Not only is this catchphrase a conversation starter, but it’s a very long-lived piece of the medical record – paper and electronic – and, after a brief incarnation as “presenting complaint”, lives on today as ‘History of Present Illness’.

So if patient is historically and socioculturally loaded, what else can we call them? Pat Mastors lists some alternatives: consumer, partner, person. Dr Hem, in Norway, overlaps in saying user,consumer, customer. More on these alternatives in my next post. In the meantime, be patient.

References cited

Bissonnette JM. Adherence: a concept analysis. J Adv Nurs. 2008 Sep;63(6):634-43. doi: 10.1111/j.1365-2648.2008.04745.x. Review. PubMed PMID: 18808585

Hem E. Patient, client, user or customer? Tidsskr Nor Laegeforen. 2013 Apr 23;133(8):821. doi: 10.4045/tidsskr.13.0527. English, Norwegian. PubMed PMID:23612085.

Smith CA, Wicks PJ. PatientsLikeMe: Consumer health vocabulary as a folksonomy. AMIA Annu Symp Proc. 2008 Nov 6:682-6. PubMed PMID: 18999004; PubMed Central PMCID: PMC2656083

Author: cat

Associate professor at the University of Wisconsin-Madison

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