Shared Decision Making or Paternalism?

tered the term, “shared decision making” (SDM) for the first time. It was in a paper that stated that a doctor needs to use SDM before instituting an antipsychotic drug with a “black box warning” to treat psychotic symptoms in people with dementia with Lewy bodies (DLB). DLB is a variant of Parkinson’s disease (PD) in which dementia precedes motor signs, whereas PD with dementia starts with motor features, followed by dementia, which occurs in about 80% of PD patients. The rationale for SDM lies in the observation made in several distinct studies of demented elderly, that all antipsychotics are associated with an increased mortality rate, although in none of the studies is it clear what the cause of the increase is. In some of the reports the increase is clinically significant, but not in all. What was striking in the paper was that SDM was invoked for trying the antipsychotics because they have “black box” warnings, but SDM was not invoked for trying dementia drugs, or reducing the medications that treat the PD motor symptoms, but which contribute to the psychotic symptoms. This sounds reasonable. One type of drug is associated with black box warnings while the other approaches are not. This got me to thinking about I r e c e n t l y e n c o u n how I approach decisionmaking in cases of PD psychosis and found that I do the exact opposite. I can’t recall ever introducing the topic of the black box warning. These drugs have the mortality risk only over the course of several months. The problems are not immediate. It is unknown if the mortality is a result of the drugs or an associated effect, and, in my extensive experience, the benefits so far outweigh the risk that there is really no choice. But, of course, the patients and the families lack the experience to make the choice. In treating people with PD, I use a SDM paradigm for everything but psychosis. If I introduce L-Dopa or a dopamine agonist, I discuss side effects and benefits and weigh this against the no-treatment option. I always reassure my patients that I do not subscribe to the “my way or the highway” approach to compliance with my recommendations. I always tell patients that I view my role as being similar to that of a financial advisor. I make educated recommendations, but that doesn’t mean they must be followed. In reflecting on my approach, using SDM for medications considered benign, but not for the only drugs I use that have black box warnings, I realize that there is an element of legal risk taking, and a larger element of paternalism. If my patient dies unexpectedly, which, of course, would raise no eyebrows, because all my patients are ill, many are elderly and most are frail, there will be no statement in the chart that we discussed the increased mortality, that the drug I introduced had a “black box” warning, and that it was not FDA approved for the indication. I would also have to admit that I was biased by my extensive use of the drugs for over 30 years, and that I am quite expert in this area. In my mind, a patient can decide whether to take L-Dopa or not. It is not life saving and may be associated with long-term side effects. It improves quality of life, but who am I to judge where the proper balance lies? If a patient would prefer to be slow and stiff rather than to take a medication, because of concern for side effects or for whatever reason, that is their choice. But to choose to remain psychotic, to embrace paranoia, or to have a family choose that for a patient who cannot reasonably choose, is not a choice I offer. I do not know how my colleagues discuss these drugs with patients. I think much depends on the relationship between them. In most cases I know my patients and their families fairly well. This is unlike the situation where psychiatrists use the same drugs on patients they have only recently met, or when the drugs are used in nursing homes. These doctors are usually involved only when the patient is in extremis. They