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Patients at the centre: in our practice, and in our use of language
  1. David S Goldfarb, M.D.1
  1. 1New York Harbor VA Medical Center
 NYU School of Medicine
 New York, USA
    1. Victor Montori, MD2,
    2. P J Devereaux, MD2,
    3. Holger Schünemann, MD2,
    4. Mohit Bhandari, MD2,
    5. Gordon Guyatt, MD2
    1. 2McMaster University
 Hamilton, Ontario, Canada

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      Dear editors,

      In their editorial about patients sharing decision making responsibilities with physicians, Guyatt et al1 review some of the evidence that patients favour involvement in their own care. They neglect a more complex body of evidence, however, that suggests that while patients like the idea of greater choice, they often find it to be less satisfying in practice.2 Just as the authors suggest that physicians incorrectly “assume that physiological outcomes will lead to improvements in mortality and quality of life,” they themselves assume that more choice will lead to greater patient satisfaction.

      As suggested by Barry Schwartz, a psychologist at Swarthmore College, the opposite may be true.3 Schwartz has identified a number of problems that arise as choices proliferate.4,5 Firstly, reliable information is difficult to obtain. The advent of the internet has increased access to information, as Guyatt et al contend, but this access may be to as much unreliable as trustworthy information. Obtaining to additional opinions and performing research are potentially costly and time consuming.

      Another problem is that as options multiply, patients’ standards for what is an acceptable outcome mount, with a loss of perspective of what may reasonably be achieved. Schwartz also notes that people may fear making the wrong choice and allow that fear to guide their choices. Or, post hoc, they may come to believe that an unacceptable result is their fault, and that their choice of therapy was mistaken. As the saying goes, good judgment is the result of experience, and experience is the result of bad judgment.

      In one example of a study that stands in contrast to those cited by Guyatt et al, people were asked to describe the role they would select in choosing their treatment plan if they had cancer.6 One hundred fifty women, newly diagnosed with breast cancer, were compared to 200 women with benign breast disease. The majority of the women with breast cancer preferred a passive role, leaving the decision making responsibility to their physicians; the benign disease control group preferred a collaborative role with decisions made jointly between the patient and the physician.

      Schwartz has written that “Indeed, there may be a point when choice tyrannizes people more than it liberates them.”7 Like the participants in the study cited above, my own mother, an intelligent and strong willed professional, was faced with the choice between lumpectomy and mastectomy for breast cancer. She sought opinions from 2 oncologists, an internist, a gynaecologist, and her son, a nephrologist. I thoroughly reviewed with her the medical literature of the day. Finally, after many weeks, her unwavering decision was a non-decision, to let me make the choice, without her offering any real guidance. For the rest of her life, she was grateful to me for having “saved her breast.”

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      In response:

      Dr Goldfarb is correct that patients may legitimately choose not to participate in decision making. Indeed, at the outset of our article, we described how in the past most patients may have preferred to leave decisions to their clinician.

      We argue for the importance of patient autonomy. That autonomy begins with a preference, on the patient’s part, about the extent to which the patient wants information, wants to participate in deliberations, and wants to take responsibility for the decision. We believe, as does Dr Goldfarb, that clinicians can harm patients by forcing them into a decision making role that they do not want. Some patients, however, may choose not to participate in the decision making process because they believe physicians will not present relevant information in a manner the patients can easily understand.

      Dr Goldfarb seems to believe that a study in which the degree of enthusiasm for active participation in decision making varied with the underlying condition somehow undercuts our point. Preferences will vary between patients and between contexts. Our contention is that evidence suggests that patients today are more inclined toward active participation in decision making than were those of several decades ago.

      Will patients be better off if they choose to participate more actively in decision making? This is an empirical question best answered by randomised trials of alternative decision making approaches. A systematic review of 34 randomised trials of use of decision aids, a process that promotes active patient participation, showed that in general these approaches reduce decisional conflict (weighted mean difference 19 on a 100-point scale, 95% CI 13 to 24).1 Furthermore, results of randomised trials have shown that coaching patients to become more involved in making decisions can improve patient wellbeing and some disease specific outcomes.2,3

      In our article, we stated that “Shared decision-making—like evidence-based medicine when in its initial phases, and perhaps even today—also faces risks of misunderstanding.” Dr Goldfarb’s letter vividly illustrates our point. In his final paragraph, Dr Goldfarb tells the story of his mother’s choice about lumpectomy or mastectomy for breast cancer. The patient sought opinions from 5 physicians. She ultimately reviewed the evidence with her son. In the end, having heard several opinions, and with an understanding of the evidence, she chose to leave the decision taking to her son. It appears that Dr Goldfarb’s mother was interested in obtaining the best understanding she could of the tradeoffs around her decision. Presumably, had there been a clear choice, she would have made it herself. In the end, it appears she concluded that the decision was closely balanced. Thus, she was most comfortable leaving the final choice to someone whom she trusted would have an indepth knowledge of the benefits and risks of the alternatives, and an equally deep understanding of her values and preferences.

      To the extent that this characterisation of events is accurate, Dr Goldfarb’s story is completely consistent with the shared decision making that our article advocates. Dr Goldfarb’s mother’s choice to have her son make the decision proved the right one because he understood her values and preferences—this is no doubt why she chose him, rather than the other 4 physicians she consulted, as the final decision-maker. Outcomes might be less happy if decision makers do not have a deep understanding of patients’ values and preferences—had, for instance, Dr Goldfarb’s mother relied on a physician who selected mastectomy as the best option for her cancer.

      Among the skills required by clinicians aspiring to evidence-based decision making are an appraisal of the complexity of the decision, the informational needs, and the decision style of the patient and the likelihood that patients with different values and preferences will make different choices after receiving the same information. In preparing information, clinicians must avoid framing bias and attend to uncertainty in knowledge about likely outcomes. Ultimately, whatever the degree of involvement the patient chooses, the clinician must focus not on clinically relevant but rather on patient important outcomes.

      References

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