By Deborah Cho
In recent years, providers have attempted to shift how health care is delivered so as to include the patient in the decision-making process. This concept of shared decision-making was most memorably relayed to me in medical school through a critical lesson during which we were instructed to replace the word “noncompliant” with “non-adherent” when describing patients who were unwilling or unable to stick with treatment regimens. Noncompliance painted a picture of a paternalistic provider mandating the rules of play, while the patient cowered below as a disobedient subordinate. It also implied that the patient did something wrong by breaking the rules and that the actions of the patient ought to be modified to fit the rules, rather than the other way around. On the other hand, non-adherence signified that the patient was a contributing partner in the development of the treatment plan and, further, that he may be justified for not abiding by the terms of his plan.
There were two overarching reasons for the shift to the shared decision-making model: first, that this would produce better overall clinical results and second, that this view shows more respect for patient autonomy. Providers were learning and accepting that treatment plans prescribed within their vacuums could fail to be affordable, intelligible, or even realistic given a patient’s life circumstances.
So how does this relate to law students and lawyers?
In my experience, the legal world, and more specifically the Social Security disability realm, also sometimes acknowledges that it is not always the “fault” of the patient when he fails to take his medications, make the appropriate lifestyle changes, or otherwise do as his provider has instructed. For example, a claimant for disability benefits may have legitimate justifications for failing to follow prescribed treatment (as the Social Security Administration refers to it) in financial hardship or if his mental illness causes that noncompliance. However, I argue that there is still room for improvement. Factors within the gray areas of noncompliance that the shift toward non-adherence attempts to address, such as cultural differences between a provider and her patient or a patient’s inadequate education, are left untouched. If a patient fails to comply with his treatment regimen because he didn’t understand the unduly complex instructions given by his provider and further failed to ask clarifying questions because of his cultural background, that patient will simply be seen as noncompliant. This is a significant issue, as noncompliance can be grounds for denial of a disability claim.
I recently spoke with a physician about the woes of the current scheduling method of follow-up visits. As a patient is leaving the office, he is handed a card with his follow-up date and time. He is instructed to call the office to reschedule if he cannot make his appointment time. This system has expectedly resulted in two major frustrations for providers: no-shows and double-bookings to compensate for anticipated no-shows. Also among the many problems of such a system is that when a patient fails to attend his appointments because of this wholly inadequate scheduling practice, he is penalized by the legal system for his “noncompliance.” Instead, the legal analysis here should involve looking into a health care system that has failed to appropriately involve the patient in scheduling appointments, thereby significantly decreasing the possibility that the patient could properly adhere to the plan.
I am not implying that patients should bear no responsibility in their medical care or that there should be a complete dismissal of professional judgment when providers make treatment recommendations. Rather, law, like medicine, should acknowledge that the health care world is difficult to navigate and should explore an individual’s circumstances further before labeling him as disobedient. This is particularly true in disability adjudications, where the role of the administration is not adversarial but is instead inquisitorial. As a first (but admittedly large) step, lawyers practicing health law should begin to replace the word compliance with adherence to encourage an appropriate change in attitude that is in line with the medical field.
I don’t think “non-compliance” cases are always as clear cut as the ones often proposed (not taking medication etc.). I had a gastroenteroscopy and they found a polyp. They took a sample. It wasn’t malignant. Then the surgeon told me they wanted to operate. Being a sportsman I know being cut open at the abdomen will preclude you lifting weights etc. for a long time if not forever. So I said ‘what for, it’s not malignant?’ – Well, you see, these polyps often are malignant at point A and we scrape off at point B, better get it removed. Then I said: ‘Ok, then tell me, if you did a ‘gastro’ on the entire population, how many polyps would you expect to find? Excluding all the ones diagnosed as malignant (where operation may or may not be the measure of choice, I don’t care, would you operate on each single non-malignant one just because you could?’ If not – why in my case. Well, in the end, even the head surgeon was summoned to my bed arguing. In the end, in desperation, he said: ‘You don’t believe I’d suggest an operation that was not necessary?’ Well, I wasn’t sure, but that wasn’t the point: the problem is that these “medicine men” cannot cope with patients who know a bit more about e.g. statistics or epistemology than they do. Then the call these people non-compliant instead of admitting their own ignorance. And yes, I do know homeless people with a Ph.D. – they just don’t look it. But at any time they can hold their own when talking to a doctor. But they will be ignored. They just don’t smell right. Medicine has a long way to go yet (and law as well) until they can recognize that I know more about my body than they, because I walk around with every day. And if that does not sound scientific or, as the scientist dismiss it as, “anecdotal”, well, see the example above. The last (and most eminent) doctor urging me hadn’t even worked on my case. So much for expertise.