So you walk in to my clinic after a month of chest pain. After you climb a few flights of stairs, you feel tightness in your chest and feel short of breath. Your mind goes to the television ads with the person with an elephant sitting on his chest. You are concerned, and rightfully so, that something might be wrong with your heart. Your mind wanders to the memory of a close friend who had similar chest pain, ignored it, and one day was found dead running in the park. You are unsure about what to do and in your hand you are clutching a brochure the clinic receptionist gave you, emblazoned with a doctor in an impossibly white coat, titled ‘Shared Decision Making.’
Shared decision making is the newest member in a long list of popular medical terminology that is supposed to convey the patient-centeredness of modern medical care (see also: patient centered medical home, accountable care organization) and several recently published studies have espoused its many benefits. The idea emerged from the recognition that increasingly, patient preferences were not being taken into account to make important medical decisions. This is even more important given that most medical decisions are in fact not very clear cut, with ambiguous or divergent research providing enough wiggle room for a true conversation to be possible. While having physicians share information with engaged patients seems like a foolproof idea for providing great care, here’s why that’s far from being the case.
Much of how your hypothetical chest pain would be managed depends on whether it is defined as ‘stable’ or ‘unstable.’ There are no labs or imaging tests that could help me make this distinction but it’s a very important one. Stable would make me start medications while unstable would make me send you to the emergency room likely resulting in you getting a cardiac catheterization.
But how doctors think and share information is mired by biases. What if the last 20 cases of such patients I saw ended up having no disease with a few having major complications from the procedure such as bleeding or kidney failure. Conversely, if even one of the last 20 patients I saw dropped dead in a park, I would be much more inclined to maybe have him evaluated in the emergency room. This is among just one of many types of unconscious biases that affect how physicians may participate ineffectively in shared decision making.
But while bias is unconscious, physicians also have more conscious conflicts of interest. Data suggests that physicians are more likely to do tests or procedures that they get reimbursed for, which is why a primary care physician may be less excited about the cardiac catheterization compared to if this patient showed up to an interventional cardiologist’s office. But depending on that specialist’s experience, he may also be less likely to offer certain procedures. Studies have shown that cardiologists are less likely to perform cardiac catheterizations in states where they are required to publically report the outcomes of their procedures.
Biased decision making doesn’t occur on just one side of the table—you, the hypothetical patient, are also prone to having a skew. Research has demonstrated that patients with chest pain prefer invasive procedures far more than they do medications even though they may not be indicated. This is also reflected in a study that collected data from thousands of patients that patients who tended to get more (more medications, more doctor visits, longer hospitalizations) but not necessarily better care (higher mortality) had higher satisfaction. Terminology, can also affect patient preferences. In one study, when ‘Ductal Carcinoma In Situ,’ a limited form of breast cancer, was described as a form of ‘cancer’ as opposed to a ‘high risk condition,’ more patients opted for surgery.
Having patients participate in critical decision making may represent a rose tinted view of the clinical encounter with assumptions abound, including that physicians won’t be harried, there will be adequate time to discuss nuances of each option (the average time physicians spend in and outside the clinic per patient is 13.3 minutes) and that the patient will be completely stress free to make a rational and reasonable decision in spite of the stress of being in that situation. In fact there is data to suggest that patients who were more involved in the decision making for breast cancer treatment were more likely to regret their decision six months down the line. Another decision that may affect a patient’s decision may be cost due to the advent of high deductible health plans; patients may shirk away from potentially beneficial treatments because of cost concerns.
Outside of a few conditions, notably cancer, conversations about interventions rarely include more than the physician who is going to do the procedure and the patient. While physicians can be quite territorial, it is important that physicians a patient knows and trusts, such as the patient’s primary care physician, be also involved in critical decision making. A study showed that patients are more engaged in decision making when they trust their clinician; when patients don’t know a physician well, they are more likely to be passive in the process.
Patients don’t want to autonomously make decisions. In fact, a large study from researchers at Yale showed that a third of patients want no role in medical decision making.
Most patients look to their physicians for support and advice. More than information, patients seek their physicians’ judgment. But patients need to understand that with the power to choose comes a burden any physician is all too familiar with. The real choice is how much decision making they are willing to take on.