In the discussions about how to bring the humanities into medicine, one essential feature often gets lost. The attempts to make care more human and more humane aren’t being done for the sake of warm fuzzies. There are concrete ways medical outcomes suffer when healthcare practitioners and patients aren’t communicating well.
Writing in The BMJ, Christine A. Barry, et al. provide one of the clearest discussions on medical outcomes suffering from ineffective communication, and why both patients and doctors are hesitant to change communication for the better.
There were two large barriers to understanding the link between medical results and good communication. The first is a lack of concrete ways to talk about patients’ desires. The notion of an “expectation” is vague. An expectation might be explicit or unconscious, specific or a broad sense of hope. Barry et al. shift the notion of patient desires from “expectation” to “agenda”. The patient agenda, a concept introduced by Levenstein et al.1, focuses on items which the patient has expressed they want to discuss in consultation with a doctor.
The second hurdle is that most research focuses on what is said in a consultation. The authors specifically set out to interview patients beforehand, record the encounter with a doctor, and determine the outcomes after that visit.
For these reasons, Barry et al. were able to list and categorize what patients wanted. They could itemize what remained unspoken. Then they could match what was unsaid to specific medical outcomes, and even comment on the reasons patients didn’t receive what they had wanted.
On a larger level, this article on agendas ties together several different important themes, like patient autonomy, medical outcomes, and treatment options.
When the patient decides to seek treatment, they do so with autonomy. They are
socially and contextually situated, thinking, feeling people, with their own ideas on their medical condition and opinions and possible criticisms of medical treatments. In this light, Barry et al. describe patients being interviewed before their consultation as
more fully present.
Patients develop an agenda for their visit to the doctor which reflects them as a whole person. The data Barry et al. collected points to the fact that patients see their illness or symptoms in the context of their entire lives, and not just in terms of bodily fitness.
From the complete studies the authors collected, they determined 35 cases to be representative, and analyzed them in detail:
Agendas were classed as symptoms, diagnosis theories, illness fears, wanted and unwanted actions, self treatment, and emotional and social issues.
Of the 35 patients in this study no one had only one agenda item and most had five or more.
Only four of the 35 patients voiced their full agendas. These items tended to represent biomedical issues, mainly symptoms… Only two patients did not have symptoms to report and of those 33 who did, 24 managed to relay all their symptoms to the doctor.
Eight, however, only managed to impart some of their symptoms and one did not mention his symptoms at all. Unvoiced agendas tended to represent psychosocial issues and reflected patient’s autonomy.
In an effort to explain why patients rarely voice their complete agenda, the authors turn to Mishler’s medical application2 of Jürgen Habermas’ Theory of Communicative Action (Theorie des kommunikativen Handelns). Habermas distinguishes whether action is communicative or strategic. In other words, he distinguishes whether an action sets out to find the best course of action or sets out to achieve a predetermined goal. Mishler paralleled these ideas in medicine as either encompassing a patient’s
grounded experience of events or viewing them in medical isolation.
This is a theoretical and sociological way to introduce the concept that patients feel they have to leave a part of themselves behind when they go to a doctor’s office. Healthcare providers may feel unprepared to consider the agenda items touching a person outside of isolated symptoms. They may also feel those agenda items aren’t relevant to the medical relationship. Whatever the reason, the part of the patient left in the waiting room is the same part of the patient which a physician won’t see coming into their consultation.
This [model] suggests that in the consultation the patient is most commonly construed as a purely “biomedical” entity—that is, a person with disconnected bodily symptoms, wanting a label for what is wrong and a prescription to put it right. Even under this guise the patient still sometimes fails to report their full biomedical agenda. Not all symptoms were reported (nine patients) and not all desires for a prescription were voiced (nine).
[The medical anthropologist Ellen S.] Lazarus3 showed that although patients’ interactions with their doctors coincided with their versions of the biomedical model, they did not coincide with their expectations of health care and how it should be delivered. Maybe patients are behaving as they believe they are expected to rather than as they would like.4
To put this in terms of the patient as an autonomous person,
In consultations patients seem only partially present, with only limited autonomy—that is, to make requests but not to suggest solutions. This all ties together agenda, presence, and autonomy, but Barry et al. go one step further. They observe that issues with communication negatively effect outcomes and treatment.
The authors followed up after the initial interview and physician consultation. Two of the authors
coded all cases according to these outcomes and independently produced a composite rating on a scale of 1 (good outcome) to 4 (problem outcome).
Fourteen of the 35 cases studied had a “problem outcome” rating. In all of those 14 cases,
at least one of the problems was associated with an unvoiced agenda item. … Irrespective of whether or not the patients thought it was important to voice their agendas, there were often ensuing problems.
Barry et al. detail two separate case studies to illuminate how patients don’t feel able to discuss all of their concerns.
The first describes a mother concerned about her daughter’s prolonged cold, coughing at night, and insomnia, among other symptoms. The mother is hesitant to put her daughter on antibiotics, and wants to mention that her daughter has a history of ear infections. Instead, the mother only mentions her daughter’s cold and “chest”. The physician
assumed that [the mother] had come for antibiotics and prescribed amoxycillin. The mother, in turn, assumed that if antibiotics were prescribed, the infection must be serious. She filled the order right away, and her daughter took the entire course of antibiotics. In the follow-up with the researchers, the physician realized that he had misunderstood the mother, and that he had prescribed a completely unneccesary medication.
The second case study details a truck driver whose agenda was mostly expressed, due to the physician’s patient-centered approach. The driver expressed many of his symptoms, although he never mentioned that he had had an ulcer before and was worried that one had returned. Talking to the authors he mentioned,
My dad died four years ago of cancer of the stomach. I’m also worried generally at my age or,
I just want advice on my eating habits. He never mentioned either to the physician. Maybe most importantly, he never voiced that he had had antidepressants before. They made him sleepy and sluggish, and because of his profession, he absolutely did not want them again. The doctor prescribed “sleeping tablets”. The truck driver
mistook them for antidepressants, did not present the prescription, and was feeling awkward about how to admit this to the doctor at his next appointment. This may have been a factor in his not returning to the doctor as requested.
If there are consequences for patients not being able to express their complete agenda, why are physicians and even patients resistent to changing their communication? As one clue, the authors detail some of the
quite strong reactions physicians have had to these findings:
I got so depressed when you described [the truck driver] whose list of expectations went on to about 18 (sic) points … There’s no way that I am ever going to be able to address even three of these, let alone 18 expectations.
Barry et al. touch on the idea of complexity:
Even apparently simple presentations, for example a child’s chesty cough, can mask more complex agendas. Health care providers like simple agendas. Simple agendas are, well, simple. There is a simple biomedical problem that can be solved or treated with a routine pharmeceutical or intervention.
Complex agendas force both the physician and the patient to work together. Habermas would call this “communicative action”. The patient is faced with the prospect of opening up not just about biomedical facts, but personal experiences to a person who is at their core a well-educated, busy authority figure. The authors put this succinctly: patients are
worried about what is deemed appropriate to communicate and about wasting doctor’s time.
Physicians, as mentioned, either don’t feel qualified to handle complex agendas, in particular the emotional and social aspect of a complex agenda. Even if they do, physicians are worried about indulging “heartsink” patients, or that hearing a complete agenda is fundamentally a waste of time.
To that, Barry et al. merely comment that when a patient does not voice their complete agenda — even if the physician is extremely patient-centered — medical outcomes suffer.
This is why it’s essential to switch the way we think about medical communication from a neat, “simple” exchange of diagnoses and treatments to a more complex, narrative approach. The concern that a “heartsink” patient will schlepp
18 points with them into the consult and that the physician will have to answer each one individually and painstakingly is understandable. Healthcare providers are under extreme pressures to deliver results quickly. In the example of the truck driver presented, though, the agenda items included personal and family history, medical and medication history, a desire to be more healthy and to exercise more in general, in addition to specific possibilities for a diagnosis from personal experience, and current symptoms.
Of course it’s daunting to handle all of that information. Much of it, though, hangs together in a coherent picture of that person’s world. If health is not merely the absence of disease, but the presence of well-being, then “complex” agendas like the truck driver’s should be welcomed. An agenda like his shows that the patient has some idea of how to be healthier, whether or not all of the specifics are correct.
The authors make the point that a patient not being able to fully express their agenda means that health outcomes will suffer. The goal, then, is to have a patient who fully articulates their agenda receive improved health outcomes.
Patients feel they’re only able to articulate what we might call the “beginning” of their story, and health care providers are eager to get to its “finish”. The patient feels that the medical relationship only permits them to talk about symptoms, while the physician often feels the visit is driving towards a particular treatment.
The idea of patient agendas is a way to flesh out how patients and providers can connect more deeply. It allows both the patient and provider to lift their eyes up from the domain of their own thoughts, and tie their ends together. The patient can tell their entire story, from history and current symptoms to their ideas about what might be wrong, to their hopes and reservations about particular treatments. The physician can get a complete view of the patient’s history and desires for treatment.
Teasing out the particular points of an agenda is useful for study, but they ultimately hang together in one narrative. When the patient is allowed to bring their entire story into the consultation, they’ll bring with them where they’ve been, what brought them to that office, and what they want when they leave. Only then will the entire patient agenda be heard and utilized in treatment.
The article reviewed: Barry, Christine A., Colin P. Bradley, Nicky Britten, Fiona A. Stevenson, and Nick Barber. “Patients’ Unvoiced Agendas in General Practice Consultations: Qualitative Study.” BMJ 320, no. 7244 (May 6, 2000): 1246–50. https://doi.org/10.1136/bmj.320.7244.1246.
1 Levenstein, J. H., E. C. McCracken, I. R. McWhinney, M. A. Stewart, and J. B. Brown. “The Patient-Centred Clinical Method. 1: A Model for the Doctor-Patient Interaction in Family Medicine.” Family Practice 3, no. 1 (March 1986): 24–30. ↑
2 Mishler, Elliot George. The Discourse of Medicine: Dialectics of Medical Interviews. Norwood, NJ: Ablex Publishing, 1984. ↑
3 Lazarus, Ellen S. “Theoretical Considerations for the Study of the Doctor-Patient Relationship: Implications of a Perinatal Study.” Medical Anthropology Quarterly 2, no. 1 (March 1988): 34–58. https://doi.org/10.1525/maq.1988.2.1.02a00030. ↑
4 Stimson, Gerry V., and Barbara Webb. Going to See the Doctor: The Consultation Process in General Practice. London: Routledge and Kegan Paul, 1975. ↑