By Victor M Montori, Ian Hargraves, Annie LeBlanc
Policymakers fashionably prescribe shared decision making for patients who face fateful decisions. These patients have two or more medically reasonable courses of action that differ in important aspects. The extent to which these aspects differ in ways that matter to each individual patient justifies patient involvement in the decision-making process. Similarly, the extent to which clinicians can accurately predict the values and preferences of informed patients reduces the value of shared decision making. Only in circumstances where the distribution of patient preferences is very narrow can clinicians correctly deduct patient preferences (e.g., analgesics vs. no intervention for moderate to severe pain). This is often the case when the pros and cons of alternative courses of action are well known, their likelihood estimates are based on highly reliable research evidence, and difference between the benefits and the potential harms and inconveniences is large and clear. In such situations the distribution of patient preferences will be narrow enough that most clinicians can assume correctly what most patients will want. At the extreme, these decisions will seem purely technical, where the right course of action is apparent to those with a good understanding of the situation. This would include professionals with pertinent training. In situations that cannot be resolved by the application of technical knowledge, patients, when informed, will exhibit a range of preferences. It seems appropriate then that patients and clinicians partner to share information, deliberate, and arrive at a decision together. We call this process shared decision making.
Proponents of shared decision making assume that most clinicians and patients, when given the tools, time, and supportive setting necessary, will be able to implement shared decision making. Reality seems to behave differently: surveys suggest that patients are not universally inclined toward shared decision making, clinicians are often portrayed as barriers to this process, and environments have electronic medical records, phone calls, time pressures, competing demands, and noise that conspire to interfere with shared decision making. What’s going on if patients and clinicians aren’t adhering to the shared decision making prescribed on their behalf?
Our group, the KER UNIT, characterizes shared decision making as a conversation – an activity in which patients and clinicians turn with one another (the etymology of conversation—versare turn; con with). In conversation, the options with their attributes or issues are in dynamic interaction as the patient and clinician consider them and experimentally try them on. This highly interactive dynamic requires the active engagement and involvement of the patient and clinician. This turning-with of patients and clinician is the dance of shared decision making.
The clinician is used to contemplating the situations of patients and making tough decisions routinely; but for this patient, at this time, the task is anything but routine. Thus, it is natural to delegate to the more experienced and emotionally detached of the two the task of organizing the decision-making conversation. The clinician, leading the dance, will identify that a decision needs to be made, the relevant options and their relative desirable and undesirable features, and will invite the patient to consider these options and features. But, to what extent are patients willing and able to engage in deliberation?
We propose that the adequate way of answering this question is through empathy. In suggesting empathy we do not mean that clinicians should empathically divine the right decision for the patient; quite the opposite. We are suggesting that the co-creation of decision also involves the co-creation of the patient-clinician relationship and the conversational environment in which each decision is made. Empathy directs attention to the clinician’s active role in finding the right relationship and stance to join this patient at this time in decision making. Clinicians are trained and are expected to exhibit empathy when interviewing and examining patients, responding to patient concerns, and delivering bad news. The role of empathy in supporting decision making has not been fully discussed, to our knowledge. In this case, empathy requires attention to the situation of the patient and to the cues, verbal and nonverbal, the patient offers as the clinician invites the patient into the deliberative process. Some patients may be able to partner fully and co-create the decision; others may engage with the information, but delegate the rest of the tasks of deliberation and decision taking to the clinician. This is the expression of a preference that is being constructed on the spot (it follows that this preference cannot be adequately assessed with a survey tool, before the encounter and therefore out of context). The appropriate stance in the conversation is available to the clinician in subtle signs that the clinician can pick up through empathic attention to the patient. Focus on who the patient and clinician are, and can be, for each other in this conversation allows us to respect that the same patient may be willing to co-create one decision while preferring a lesser role for the next. The challenge for the clinician is to correctly respond, in real time, to these emerging preferences.
Shared decision-making tools produced for use during the clinical encounter need to account for this clinical task and be designed to support empathic decision making. When encounter tools offer too much information or script a step-by-step decision process, they may inadvertently limit the ability of the clinician to empathically guide the process. When tools are used in preparation for the visit, clinicians may assume that completion of the tool and associated worksheets signals that patients are fully engaged and ready to make decisions. That a tool should enable and support empathic decision making is not currently a requirement for their design of decision aids, or a metric for their impact.
In summary, shared decision making is one of an infinite set of ways in which patients and clinicians can engage in conversation about fateful decisions without a technically correct answer. To create the environment in which patients and clinicians co-create decisions, clinicians must actively invite and support patients in the process, empathically “reading” the patient to match their evolving preference for participation. Tools to support this process need to be designed to facilitate and not interfere with empathic decision making, and this may form the basis for new measures of decisional quality.
Thus, we are not just for shared decision making. We are for empathic decision making.