By Karen R. Sepucha. PhD, Instructor in Medicine, Massachusetts General Hospital, Harvard Medical School; and Michael J. Barry, MD, President, Foundation for Informed Medical Decision Making
A woman newly diagnosed with early stage breast cancer leaves a multidisciplinary clinic with an appointment for a lumpectomy to be followed by radiation therapy. Is the treatment decision a good one?
Successful reform of the US healthcare system will be determined not only by whether more patients have access to care, but also by how the system responds to growing consumer demand for an increased role in treatment choices.
Clinical guidelines, such as those of the National Comprehensive Cancer Network, indicate that for women like her, breast-conserving therapy is appropriate.1 Using the standard of guideline adherence, she has made a high-quality decision. But consider the following 2 quotes from breast cancer survivors who also were candidates for breast-conserving surgery:
“The doctor put down 3 things that I had to worry about: survival, recurrence, and cosmetics. She said the survival rates were the same, the recurrence rates were slightly different and cosmetic obviously was the big difference. I was fine with the lumpectomy. I was like, ‘No way do I want a mastectomy’”
“I really would rather have the breast off, to be honest. But that wasn't an option I was given. They told me that they would do the lumpectomy. I am very nervous. It's still a worry.”
The first patient was presented with options and received treatment that was consistent with her preferences. The second was presented with a recommendation, followed it, and has some regrets about her choice.
Treatment rates or adherence to clinical guidelines do not provide enough information to assess the quality of these types of decisions. A better approach would focus on determining how patient-centered the care was by assessing the degree to which patients are informed and the extent to which treatments meet their needs, wants, and values.2,3
Allowing patients' preferences for treatment to guide choices can be challenging, especially when they diverge from providers' treatment recommendations. With the advent of less invasive surgical techniques, it may be hard for doctors to imagine patients not always wanting them. For example, providers are often surprised to find that, when informed and asked, up to half of breast cancer patients do not believe keeping their breast is particularly important.4 When considering all factors involved in breast-conserving surgery (the likelihood of re-excision; weeks of daily radiation therapy; and, for some, increased anxiety associated with more intensive screening) many women prefer a mastectomy.
Breast cancer is not the only condition in which such engagement is needed. For example, men facing treatment decisions for early prostate cancer must determine whether the potential impact of sexual and urinary dysfunction is worth the benefit of radical prostatectomy. Patients' preferences also are critical in many common cancer decisions, such as determining the overall aggressiveness of treatment protocols, whether to enroll in a clinical trial or pursue standard care, and whether to stop active anticancer treatments and focus on palliative approaches.
In these situations, how often do patients receive treatments that they do not want? The Cochrane Collaborative systematic review of decision aids sheds some light. In studies of elective surgery, such as treatment of a herniated disc and benign prostate disease, patients who are better informed were found to be 25% less likely to undergo surgery compared with controls. Of course, treatment rates do not always decline. For some conditions, informed and engaged patients select surgery more often. The goal is not about lowering or raising treatment rates; rather, it is about making sure that the right patient is getting the right treatment.
Several institutions around the country have started to implement support systems to deliver patient-centered cancer care. Two core pieces include:
Patient decision aids: Booklets, videos, and worksheets that present high-quality evidence to patients in an understandable manner while helping them to identify their most important concerns and discuss them with their providers. (For example, see the inventory of decision aids maintained by researchers at the University of Ottawa, available at: http://decisionaid.ohri.ca/AZinvent.php.)
Decision quality instruments: Written surveys that can be used to determine whether patients are informed, what their goals and concerns are, and the extent of their engagement in making treatment decisions.6
These tools have been integrated into clinical care in both the primary and specialty care settings. Dartmouth–Hitchcock Medical Center's Comprehensive Breast Program in Lebanon, New Hampshire, has integrated health information technology with patient decision aids and decision quality assessments.4 The University of California, San Francisco's Carol Franc Buck Breast Care Center and Allegheny General Hospital's Breast Center in Pittsburgh, Pennsylvania, have also integrated such tools into routine care. Replicating this model in other cancers is possible, and efforts have begun in prostate cancer at a few sites.
Successful reform of the US healthcare system will be determined not only by whether more patients have access to care, but also by how the system responds to growing consumer demand for an increased role in treatment choices. Investing in systems choices. Investing in systems to support patients and providers with decision making will help ensure that the right care is given to the right patient every time. The news media features stories of physicians operating on the wrong body part or giving the wrong doses of chemotherapy, and these clearly are quality issues that need to be addressed. However, it is equally important to make sure that the right person is in the operating room or infusion center in the first place.