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Sharing Medicine
July 10, 2017

Shared Decision Making—The Importance of Diagnosing Preferences

Author Affiliations
  • 1The Dartmouth Institute for Health Policy and Clinical Practice, Dartmouth College, Hanover, New Hampshire
  • 2Dell Medical School, The University of Texas, Austin
JAMA Intern Med. Published online July 10, 2017. doi:10.1001/jamainternmed.2017.1923

Shared decision making occurs when patients and clinicians reach a formulation about the presenting problem and discuss how to manage it. If there are several reasonable alternatives, the alternatives should be explicitly compared, using evidence about relevant harms and benefits. Such decisions should be informed by knowledge about the patients’ condition, about the evidence applicable to it, and the patient's goals and preferences. Eliciting patients’ views has been referred to as making a preference diagnosis,1 and eliciting it requires a blend of science and interpersonal skills.

The term shared decision making began to appear in health care discourse in the early 1980s, hard on the heels of the term patient-centered care. In the late 1990s a number of articles advocated for its central place in clinical practice. This led to a surge of academic interest, fuelled by the parallel innovation of patient decision aids, tools that help inform patients about options. Mention of shared decision making and patient decision aids in the Affordable Care Act (ACA) in 2010 initiated a policy emphasis on this approach.

In these publications (academic articles and in documents such as the ACA) shared decision making is often presented as an ethical imperative. There is evidence of the impact of shared decision making on patient outcomes.2 Evidence from clinical trials on the use of patient decision aids, often viewed as a proxy for a shared decision making process, provides evidence that they improve patient knowledge and risk perception and lead to higher-quality decision quality.3 There is also increasing evidence that decision aids can enhance adherence to recommended care2,4 and that that health care costs may decrease in some situations.3,5

There are gaps in research, such as how to encourage clinicians to achieve meaningful shared decision making rather than merely checking a box in the patient’s electronic health record. Evidence summaries should minimize bias and offer recommendations that take into account the role of patient preferences.6 Undertaking shared decision-making is a cultural shift—which is difficult to achieve when clinicians feel pressured by their workload and the burdens of clinical documentation.

It is essential to understand a patient’s preferences, including the role he or she wants to play in decision making. Without a sense of what each patient prefers, it is impossible to provide care that fits the individual’s situation. When medical evidence does not support a single option, patients should be informed about treatment alternatives in ways that are easy to grasp. A redirection of effort from the generation of multiple guidelines and systematic reviews toward forms of evidence synthesis that can be easily and directly applied to individual patient encounters would be desirable.6 Accurately presenting the potential harms, benefits, and uncertainties to support a collaborative dialogue is an essential task of evidence-based medicine.7

Diagnosing Preferences

To illustrate the shared decision making process, consider a hypothetical clinical scenario:

Peter is an 80-year-old man who has had severe congestive heart failure for 3 years. Despite maximal drug therapy, he is short of breath, made worse by the slightest exertion. Based on his low ejection fraction, his medical team raises the possibility of an implantable cardiac defibrillator (ICD).

Peter's cardiologist spends time explaining that ICDs can prevent sudden death but will not improve his tiredness and shortness of breath. She pulls her chair next to Peter and says: “People make different choices, depending on what matters most to them….” She explains a bit more: “Although we will adjust your medication regularly, it is also possible to consider placing a defibrillator.” Then they both look over information, which shows that, on average, without an ICD, about 36 in every 100 patients with heart failure will die in a 5-year period. Having an defibrillator will reduce that number to roughly 29 per 100 patients by preventing sudden death.8 In other words, 7 in 100 people who receive a defibrillator will avoid sudden death over a 5-year period.

Once the physician is sure that Peter understands she asks: “Peter, what is most important to you?” He replies, “What matters most to me is the quality of my life and I thought that this device would do more for that...And to be honest, the idea of a sudden death when I am asleep might be a blessing! I’d like some time to think this over and talk to my family.”

The example illustrates the key steps of shared decision making, namely, careful collaboration and deliberation. Diagnosing patient preferences begins with constructive engagement, helping patients learn about and compare alternatives. In the language of decision psychology, the physician supports a process of preference construction and preference integration. The example is of a single episode in a longer clinical journey. Each stage of heart failure involves choices. A person who is 80 years old and has heart failure will also have comorbid conditions. The challenge of shared decision making is to create an ongoing dialogue with the clinician in which the patient's perspective is central.

To respect patients’ autonomy and engage them in understanding and choosing the best treatment option, there is an increasing array of shared decision aids. These range from those addressing screening in individuals without symptoms, as in the case of screening for prostate cancer, to thrombolysis for acute stroke.9 However, there will never be an ideal decision aid for every clinical situation, and tools are only a start. Clinicians should develop skills that support patients in comparing alternatives, even when these tools are missing. The Box summarizes strategies for supporting shared decision-making.

Box Section Ref ID
Box.

Strategies for Supporting Shared Decision Making

  • Knowledge Tools: Clinical practice guidelines have limitations: they are not designed to inform clinical encounters; briefer, more accessible tools, such as the Mayo Diabetes Cards and Option Grids patient decision aids, are available and summarize the evidence about options.

  • Skills: Sharing decisions, and using these tools, requires skills in effective communication, especially in preference elicitation and risk communication. These skills can be taught, measured and monitored.

  • Measures: Patient experience measures that accurately reflect shared decision making, such as CollaboRATE patient-reported measure and the 9-item Shared Decision Making Questionnaire (SDM-Q-9), hold promise for assessment of clinician performance and setting new standards of care.

  • Team Approach: Sharing decisions is a team effort, and all clinicians in a care team should be involved and supportive. Patients may be distressed if some clinicians share decisions with patients and others do not.

  • Organizational Support: Executive leadership and resources are needed to introduce the systems for facilitating the use of knowledge tools, electronic records and resources.

The Centers for Medicare & Medicaid Services (CMS) has provided leadership is supporting shared decision making. For example, CMS requires that screening for lung cancer with low-dose computed tomography should always be accompanied by the use of a patient decision aid to counsel the patients about the potential harms of incidental findings as well as the benefits of early diagnosis. For percutaneous left atrial appendage closure therapy, CMS recommends that a patient decision aid be used and requires discussions with a clinician who does not perform the surgery.10

Conclusions

Sharing clinical decisions with patients requires new attitude and skills, as well as better clinical tools, for diagnosing and responding to patient preferences. Efforts to summarize evidence should be directed toward helping clinicians and patients to understand what is possible and how to work together to make the best possible decisions.

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Article Information

Corresponding Author: Glyn Elwyn, MSc, MD, PhD, The Dartmouth Institute for Health Policy and Clinical Practice, Dartmouth College, Hanover, NH 03755 (glynelwyn@gmail.com).

Published Online: July 10, 2017. doi:10.1001/jamainternmed.2017.1923

Conflict of Interest Disclosures: Dr Elwyn reports that he has advised or consulted with Emmi Solutions LLC, who develop patient knowledge tools; National Quality Forum on certification of patient knowledge tools; and Washington State Health Department on certification of patient knowledge tools. He has been the author and editor of books related to the topic of this article, and receives royalties on sales. He is a developer and principal investigator of the Option Grid Collaborative, which is supported by Dartmouth College and produces and publishes patient knowledge tools; he is also a co-owner of the registered trademark for the collaborative. As of March 2017, Dr Elwyn had received no compensation related to Option Grid. In April 2017, EBSCO Health licensed the Option Grid Trademark, and Dr Elwyn became a consultant for the company. Dr Pignone reports that he is a medical editor for the Informed Medical Decision Foundation and Healthwise, a manufacturer of patient decision aids. No other disclosures are reported.

Disclaimer: Dr Pignone is a member of the US Preventive Services Task Force (USPSTF); the views presented herein are his and not necessarily those of the USPSTF.

References
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Option Grid. Heart failure: implantable cardioverter defibrillator (ICD) placement or not? http://optiongrid.org/pdf/grid/grids/43/43.en_us.1.pdf?time=1470761006&signature=599af3a9a10a19a949d17d3484544d84. Accessed March 30, 2017.
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Centers for Medicare & Medicaid Services. Decision memo for percutaneous left atrial appendage (LAA) closure therapy (CAG-00445N). 2016. https://www.cms.gov/medicare-coverage-database/details/nca-decision-memo.aspx?NCAId=281. Accessed March 30, 2017.
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