Share decisions because it is the right thing to do

Written by Victor M. Montori, MD and Jon C. Tilburt, MD

Lee and Emanuel raise the profile of the shared decision making (SDM) provisions in the Patient Protection and Affordable Care Act. We concur that those provisions should spur research and development in SDM. However, their claims, that we already know how to implement SDM and that it is time for pay-for-performance for use of certified decision aids, are both premature and misguided.

Studies of decision aids implemented outside clinical visits show improvements in patient knowledge about the available options and about their risks and benefits, but not in actual sharing of decision making. Decision aids for use by patients and clinicians during the visit may work better. Video data from hundreds of recorded visits show a stark difference: patients in decision aid visits are better informed and participate more in making decisions. Patients and clinicians end up more comfortable with decisions they made together. In-visit decision aids galvanize patients and clinicians around a shared a purpose – to make the best possible evidence-based decision given the patient’s values, preferences, goals, and context. Yet, getting this degree of patient engagement does not happen with the flip of a switch and routine implementation remains untested.

Lee and Emanuel rightly point out the potential utilitarian benefits of SDM, particularly about surgical decisions. However, in so doing they jeopardize the patient-centered vision at the core of SDM. Moreover, their economic claim of cost-savings overreaches the current state of the evidence, making their SDM-linked pay for performance proposal premature. Research on SDM implementation is green, clinicians and patients are not ready, training and tools are just evolving. Thus, we support the law’s push for research and development. Their proposal is also dangerous. A focus on cost containment and pay for performance can corrupt the journey toward implementing SDM for all: we fear that the next time a clinician pulls out a decision aid, the clinician will be thinking about reimbursement while the patient wonders whether the clinician has her back.

WIHI Talkshow: Minimally Disruptive Medicine

Drs. Montori and Shah from Mayo Clinic were featured on the August 9, 2012 WIHI (Institute for Healthcare Improvement) Talkshow in a discussion about minimally disruptive medicine. The 60-minute broadcast audio, with host Madge Kaplan, can be heard here.  Some chat responses to the opening question: “If you could change one thing in your interactions and discussion with patients with chronic conditions, what would that be?” included:

  • More of a partnership
  • Time to listen and be listened to
  • Base treatment on the patient’s goals, not our goals for them
  • A holistic approach to care
  • Clarify with the patient what his or her long-term goals are

These comments highlight the talkshow’s topic of minimally disruptive medicine. As Dr. Montori stated: “The goal needs to be shifting and sharing responsibility for chronic disease with patients and families — not shifting the burden.”

On what we believe to be the first interactive decision aid exercise on webinar, the listeners were offered the Statin Choice decision aid with a 20% risk of having a heart attack in the next 10 years. Over 2/3 of responders declined to take statins, although the guidelines would strongly recommend such people take statins!

Minimally disruptive medicine and shared decision making efforts at the Mayo Clinic were also mentioned in IHI’s Pursuing the Triple Aim (Maureen Bisognano & Charles Kenney, Jossey-Bass, 2012).

New treatment guidelines consider patient characteristics

A recent article in the Wall Street Journal, Health & Wellness magazine, New Strategies for Treating Diabetes, discusses new guidelines for treatment of Type 2 diabetes which were published in June. The new guidelines suggest patient preferences and characteristics such as age and general health be considered by doctors when treating patients with Type 2 diabetes. The Shared Decision Making National Resource Center has promoted this consideration of patient preferences and individualized treatment plans. Patient decision aids, which are developed through the Center, give voice to the patient, as Dr. Montori points out as important in the article.

A Provocative Quote

“(Patient-centered care) PCC can too easily become a signifier onto which too vast a variety of hopes and fears are displaced.  PCC is most dangerous when used to support the idea that fixes can be local, individually focused, and legislated.  If patient-centeredness is simply grafted onto existing medical systems, it will be a marketing slogan at best, and at worst will risk precipitating detrimental reallocations of resources.

For medicine to to become truly patient centered, medical workers . . . need to be supported in changing who they believe they are and how they see themselves in relation to their patients. . . .[P]atients . . . need to be shown that medicine does believe [they are] ‘worth it’, but without that worth having to be expressed in the currency of expensive and clinically counterproductive testing. . . .

[We] would not be speaking of PCC at all – instead patient-centeredness would be self-evident – if there were not deep professional institutional reasons for being centered on concerns other than patients.”

-Frank AW. Patient-Centered Care as a Response to Medification. Wake Forest Law Review 2010: 45(5): 1453-59

Creating shared decision making visuals

There is quite a bit of evidence about best ways to convey risk information to help with policy or clinical decision making. Pictographs and bar graphs along with numbers and descriptions are considered best.  Some emerging research suggests that some elements will help some patients more than others (for instance people with low numeracy).

Recently, Fagerlin, Zikmund-Fisher and Ubel published their decalogue of risk communication in the Journal of the National Cancer Institute.  Their ten steps to better risk communication were:

  1.  Use plain language to make written and verbal materials more understandable.
  2. Present data using absolute risks.
  3. Present information in pictographs if you are going to include graphs.
  4. Present data using frequencies.
  5. Use an incremental risk format to highlight how treatment changes risks from preexisting baseline levels.
  6. Be aware that the order in which risks and benefits are presented can affect risk perceptions.
  7. Consider using summary tables that include all of the risks and benefits for each treatment option.
  8. Recognize that comparative risk information (eg, what the average person’s risk is) is persuasive and not just informative.
  9. Consider presenting only the information that is most critical to the patients’ decision making, even at the expense of completeness.
  10. Repeatedly draw patients’ attention to the time interval over which a risk occurs.

Online software to create pictographs can therefore be quite handy.  Some do so without resorting to giving each “person like you” an anthropomorphic shape .

Our favorite however, is one that shows the outcomes showing visual cues that are easily relatable, based on the iconic smiley face. We are impressed by Dr. Chris Cates’ Visual Rx tool, which is a free online tool that creates “smiley face plots” to depict the impact of a treatment on 100 people.

~Victor Montori, MD

What patients want

An interesting article from was shared with us: “How much guidance do patients want with their medical decisions?”

Victor Montori, MD, comments:

While the surveys consistently show that not all patients would like to make the final decision about treatments, these surveys have two major flaws:  1) The majority of patients interview have never experienced a high-quality shared decision making interaction.  2) The decisions asked are infrequently described to the respondents of these surveys as being those in which there is no right or wrong choice.

Patients do not like to be asked to make a decision for which there is a technically correct choice. And who knows the right answer? The doctor. The decisions that are most amenable to shared decision making are nontechnical ones in which the options have trade offs that only the patient can seriously evaluate, with the help of a caring clinician. This last point is well illustrated in this piece.

We agree with the commentary writer that the context of primary care and healthcare in general is not conducive to shared decision making, and this is why this will require a patient revolution.

What shared decision making means to the patient

With shared decision making, patients have the opportunity to discuss their lifestyle and preferences with their physician (or nurse practioner or physician assistant) to make healthcare decisions that are right for them.  This can be especially beneficial to patients with chronic conditions.  In these videos, two Mayo Clinic patients share their personal experiences with shared decision making and how it has changed the management of their own health.