Sharing Treatment Decision-Making With Patients: Where’s the Evidence of Value?

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Steven J. Katz, MD, MPH

Though certainly not new to oncologists, “shared decision-making” between doctors and patients is receiving increased attention in the medical community today. While it’s an idea with merit, Steven J. Katz, MD, MPH, a specialist in quality care issues, maintains that expectations about the potential value of shared decision-making may be too high. 

Dr. Katz is Professor of Medicine and Health Management and Policy at the University of Michigan, Ann Arbor, and a member of ASCO. He heads up research projects on the quality of cancer care delivery, including a National Institutes of Health–funded study aimed at better understanding treatment decision-making.

Dr. Katz recently authored a “Viewpoint” appearing in the Journal of the American Medical Association, questioning the quality of the evidence offered in support of shared decision-making and its benefits to patients, providers, and the health-care system.1 Dr. Katz recently spoke with the The ASCO Post to elaborate. 

“We have seen an overexuberance regarding the bang for the buck, with regard to increasing the patient’s engagement in clinical encounters,” he said. “While greater patient engagement, in itself, has value—the enhancement of knowledge and improvement in patient satisfaction—whether this results in more evidence-based treatment decision-making  is the question mark.”

Does Shared Decision-Making Aim Too High?

The aim of shared decision-making, according to Dr. Katz, is to incorporate patient values and preferences into treatment decisions. He noted that shared decision-making—which strives for greater engagement of patients with their physicians—is being strongly promoted as an ethical responsibility, a way to facilitate understanding about treatment risks and benefits, and a means toward greater patient satisfaction.

But shared decision-making is also being touted as a strategy to reduce overtreatment and costs. The rationale is that better-informed patients will be more likely to choose more conservative treatments and avoid unnecessary ones.

“The increasing expectations about the role of [shared decision-making] in clinical and health policy warrant closer scrutiny of the evidence,” Dr. Katz wrote in the JAMA article. “Despite some well-documented benefits of [shared decision-making], the literature does not support its potential to reduce overtreatment and costs.”

Dr. Katz made several observations in support of his argument:

  • Studies of shared decision-making do not clearly differentiate (“disentangle”) whether the effects of an intervention can be attributed to patient- or physician-level factors.
  • There is inadequate appreciation of the complexity of how patients construct and express their preferences for treatment.
  • It is assumed, with little evidence, that patient preferences would inherently favor less extensive treatment; to the contrary, some studies suggest patients have unrealistically high expectations about what treatments can offer them.
  • There is an oversimplistic view of the clinical encounter, with blanket assumptions about which conditions or treatments are more or less sensitive to patient preferences.

Patient Engagement Will Not Reduce Costs

“In the age of cost-containment and concerns about overtreatment, we can’t assume that involving patients more in treatment decision-making will help solve these problems,” Dr. Katz said.

The concept of “cost-effectiveness” is generally applied at the system or patient population level, but patients in the exam room are not focused on cost-effectiveness; individual patients are not interested in the population, but themselves, he maintained.

“Patients are not looking to cut corners and minimize cost, unless they are held accountable.  Patients participate in overtreatment. The key issue is that patients are not good arbiters about the cost-effectiveness of their treatment,” he insisted. He suggested that the growing use of contralateral prophylactic mastectomy is an example of the influence of patient preferences on potential overtreatment in cancer.  

Dr. Katz and Monica Morrow, MD, a breast surgeon at Memorial Sloan-Kettering Cancer Center, New York, recently coauthored a “viewpoint” in JAMA that examined this issue.2 They maintained that the substantial increase in contralateral prophylactic mastectomy (from 39 to 207 per 1,000 between 1989 and 2008) stems from a number of factors, including a sense of urgency in treatment planning, the belief that “bigger is better,” the overestimation of recurrence risk and benefit of prophylactic treatment, the influence of word of mouth and high-profile patients, and the use of more sensitive imaging techniques that reveal suspicious lesions.

But a strong determinant of the use of contralateral prophylactic mastectomy, he pointed out, is “the desire of patients to reduce the fear of recurrence, if not the actual likelihood.”

In fact, thanks to highly effective systemic therapies, the likelihood of a second primary breast cancer is exceedingly small, except in patients with BRCA mutations. It is only for this subset that contralateral prophylactic mastectomy is recommended.

Surgeons also contribute to this overtreatment for breast cancer, he said. They may be convinced that aggressive surgery will improve long-term quality of life (which cannot be proven), or they may acquiesce to patients’ desires. The availability of insurance coverage for contralateral prophylactic mastectomy regardless of risk reinforces the notion that the procedure is medically indicated in any patient, he added.

“The use of contralateral prophylactic mastectomy has been growing over 7 years, and many surgeons are becoming increasingly uncomfortable with removing the unaffected breast when this will have no effect on distant disease or death but may contribute to morbidity.  In an atmosphere of patient-centered care, refusing a patient request for contralateral prophylactic mastectomy is difficult,” Dr. Katz emphasized.

Call for Validation

“Ultimately, we ought to share decision-making, but the responsibility for cost-containment is in the hands of the doctors,” he said.  Thus, he added, ASCO is “spot on” in its Choosing Wisely campaign.  The focus should be on educating providers, addressing the system-level factors that drive overtreatment, and breaking down the system barriers that lead to undertreatment, according to Dr. Katz.

The breast cancer treatment context is an excellent model for evaluating the value of shared decision-making, since treatment planning and management are already highly interdisciplinary, and interdisciplinary care links well with shared decision-making.  “Breast cancer can be a model for proof of concept and implementation of shared decision-making,” he suggested.

“Shared decision-making is not yet a quality measure, but we are headed in that direction as patient-reported outcomes—the patient’s appraisal of care—is of growing importance,” he concluded. “But we are in the infancy of standards about what shared decision-making is or should be, and a lot can go wrong while we figure this out.” ■

Disclosure: Dr. Katz reported no potential conflicts of interest.


1. Katz SJ: The value of sharing treatment decision making with patients: Expecting too much? JAMA 310:1559-1560, 2013.

2. Katz SJ, Morrow M: Contralateral prophylactic mastectomy for breast cancer: Addressing peace of mind. JAMA 310:793-794, 2013.

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