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Viewpoint
July 25, 2019

Realizing Shared Decision-making in Practice

Author Affiliations
  • 1Berman Institute of Bioethics, Johns Hopkins University, Baltimore, Maryland
  • 2Division of General Internal Medicine, Johns Hopkins University School of Medicine, Baltimore, Maryland
JAMA. Published online July 25, 2019. doi:10.1001/jama.2019.9797

Shared decision-making (SDM) is integral to clinical practice. In medical training, clinicians are encouraged to engage patients in SDM so that clinical care is consistent with patients’ values and preferences. Professional societies and other groups generating screening and treatment guidelines specifically recommend SDM. In 2015, reimbursement from Medicare for lung cancer screening was made contingent on SDM.1

Shared Decision-making in Clinical Practice

Although particular definitions and articulations of SDM vary, the core attributes of explaining different clinical options and taking explicit steps to elicit patients’ values and preferences rest on ethical grounds. SDM is intended to respect patients’ autonomous preferences and is supported by the ethical principle of beneficence because it is likely to increase patients’ adherence to treatment plans. As such, SDM may help protect the rights and welfare of patients.

Nevertheless, SDM is rarely achieved in practice2; the reasons for this are likely multifactorial. One possible reason might be that measuring SDM using observed dialogue underestimates the degree to which SDM is achieved. Studies show that patients tend to think they have been involved in making decisions when direct observation suggests they have not. This may be because patients are unaware that a decision was made, the measurement standards for observed behavior are too dogmatic, or both. In terms of measurement, some coding schemes require explicit articulation of actions that are often conveyed implicitly. For example, ensuring that patients understand there is a decision to be made may be achieved implicitly through discussion of the pros and cons of various choices. Explaining to patients that they have a role in decision-making or assessing their desired role in making decisions, which are familiar criteria for evaluating SDM, may be unnecessary when it is clear that patients understand their role by asking questions and expressing their ideas. Although explicit communication about these issues may have additional value, the potential added benefit is unclear and clinicians may sense a marginal return on the required investment of time.

Practical Suggestions for Enhancing Shared Decision-making

Setting aside technical issues about how SDM should be measured, and even granting that the actual degree to which SDM occurs might be higher than studies suggest, it still seems clear there is less SDM occurring than there should be. When SDM does not occur, diagnostic and treatment courses may be inconsistent with what patients would want if they had been informed and involved. This problem deserves attention. Among a complex set of factors influencing the uptake of SDM, 2 main limitations stand out. First, clinicians are under a great deal of time pressure and meaningfully involving patients in decisions requires time.3 Second, clinicians may be unaware that some, even routine, decisions are sensitive to a patient’s preferences. For example, some clinical guidelines make unequivocal recommendations about screening or treatment interventions, such as routine mammography or lipid-lowering treatments, for certain patients. These decisions thus seem straightforward to clinicians, who may overestimate the benefits and not fully understand the tradeoffs involved. Given these issues, 5 potential solutions may enhance patients’ engagement in their care.

Include Specificity of the Task in Calls for SDM

Calls for SDM in guidelines and recommendations alone, which appear to be becoming more common, are insufficient. To be meaningful, a specific recommendation for SDM should clearly outline the particular values, as well as the risks, benefits, and consequences, of different decisions for patients. Such an approach could better position clinicians to understand the rationale for SDM and help prioritize it along with other issues and concerns. It would also be helpful if groups and organizations that generate recommendations for SDM identified or created patient decision aids that can guide clinicians and patients through the process.

Use Decision Aids

Increasing the availability and routine use of patient decision aids could help patients engage more meaningfully in SDM. Studies demonstrate that the risks presented by clinicians in patient encounters are rarely comprehensive.4 An unstructured conversation without well-developed, comprehensive written materials is not the best format for conveying the complexity of information that a patient needs to absorb to be able to participate meaningfully. One systematic review found that the use of decision aids nearly always improved the quality of SDM, with the authors concluding that “it seems unrealistic to ask healthcare providers to bear the responsibility of involving their patients in health-care decisions single-handed—the patients themselves and communication tools are also a big part of the solution.”2

Prioritize Decisions That Require SDM

It is impractical to engage explicitly in SDM for every clinical decision. A standard for SDM that all decisions should be shared, even routine and obvious ones (such as managing cellulitis with antibiotics), seems impossible to meet and would likely frustrate clinicians (and potentially patients) aiming to deliver good care. There is limited time in each encounter. As Schneider5 noted, “Every time a doctor listens to a heart, palpates a liver, or reads an EEG, a decision follows about whether there is a problem worth pursuing. Patients cannot make an informed choice about each such issue.” For every moment spent reviewing the risks and benefits of each basic decision, there is a moment not spent doing something potentially more valuable. Braddock et al6 described a graduated standard of communication behaviors for SDM with increasing decision complexity. Whitney et al7 suggested that SDM be reserved for decisions in which there is clinical uncertainty or equipoise, and others have proposed using SDM for “preference-sensitive” decisions.8 More work needs to be directed at when and how to make these trade-offs. In the meantime, it would seem reasonable for clinicians to prioritize explicit SDM efforts for clinical decisions that have substantial consequences for patients and are likely to be preference sensitive.

Create an Interpersonal Environment That Facilitates Engagement

The ideal environment for SDM is egalitarian and respectful and persists throughout the medical encounter. When multiple decisions are likely to be made over time, including those that are routine or basic, an explicit acknowledgment about how the clinician plans to approach decision-making with the patient, along with an open invitation for the patient to engage, might be useful. For example, a clinician might say to a patient at the outset of a clinical relationship, “Whenever I think that there are more than one reasonable option, I’ll tell you about those options and you can weigh in on what you think is best for you. Whenever I think a situation is straightforward, I will make a recommendation for what I consider standard care. Even then, if I suggest something that doesn’t seem right for you, you should let me know and we can talk about all the other possible options. How does that sound?” Thereafter, the clinician could proceed without engaging in SDM for every simple decision, but patients would likely feel more in control and free to ask questions and disagree when they want to do so.

Give Recommendations With Prudence

Some communication models regarding SDM seem asynchronous with the moral intuitions of clinicians, which may contribute to underutilization of SDM. For example, strict SDM standards do not include behaviors that provide emotional support to help patients make decisions. Some standards for SDM even discourage clinicians from making a recommendation at all. However, patients often want a recommendation, and failure to provide one could create substantial emotional distress for the patient as well as conflict for the clinician concerned about unduly influencing patients by imposing their own values. There are communication strategies that help the patient reason through options, such as, “if you’re the type of person who doesn’t like the idea of taking a medication every day, then you might want to…,” “if you’re afraid of anesthesia, then it would also be reasonable to…,” or “if you’re not able to take the time off work right now, then maybe….”

Conclusions

SDM is a means to an end. The principal goals of SDM are to respect patients as individuals and to deliver care consistent with their values and preferences. Achieving these goals will sometimes involve explicitly engaging patients in decision-making. But decision-making can be emotionally demanding, and imposing a standard by which patients are expected to engage in all (or even most) decisions is not only unrealistic and inefficient, but also potentially burdensome to patients and clinicians. SDM might be better realized in practice by including specificity for particular decisions in professional guidelines, using decision aids for consequential choices, prioritizing decisions that require SDM, creating interpersonal environments that facilitate engagement, and giving clinical recommendations with prudence.

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Article Information

Corresponding Author: Jeremy Sugarman, MD, MPH, MA, Berman Institute of Bioethics, School of Medicine, Johns Hopkins University, 1809 Ashland Ave, Deering Hall 203, Baltimore, MD 21205 (jsugarman@jhu.edu).

Published Online: July 25, 2019. doi:10.1001/jama.2019.9797

Conflict of Interest Disclosures: Dr Sugarman reported receiving grants from the National Institutes of Health and personal fees from serving as a member of Merck KGaA’s Bioethics Advisory Panel and Stem Cell Research Oversight Committee, IQVIA’s ethics advisory panel, and consulting for Portola Pharmaceuticals Inc. Dr Beach reported receiving payment from Merck for giving non–product-related presentations on cultural competency and relationship-centered care and a grant from the National Institutes of Health (K24 DA037804).

References
1.
Decision memo for screening for lung cancer with low dose computed tomography (LDCT) (CAG-00439N). Centers for Medicare & Medicaid Services website. https://www.cms.gov/medicare-coverage-database/details/nca-decision-memo.aspx?NCAId=274. Accessed June 11, 2019.
2.
Couët  N, Desroches  S, Robitaille  H,  et al.  Assessments of the extent to which health-care providers involve patients in decision making: a systematic review of studies using the OPTION instrument.  Health Expect. 2015;18(4):542-561. doi:10.1111/hex.12054PubMedGoogle ScholarCrossref
3.
Pieterse  AH, Stiggelbout  AM, Montori  VM.  Shared decision making and the importance of time.  JAMA. 2019;322(1):25-26. doi:10.1001/jama.2019.3785PubMedGoogle ScholarCrossref
4.
Callon  W, Beach  MC, Links  AR, Wasserman  C, Boss  EF.  An expanded framework to define and measure shared decision-making in dialogue: a ‘top-down’ and ‘bottom-up’ approach.  Patient Educ Couns. 2018;101(8):1368-1377. doi:10.1016/j.pec.2018.03.014PubMedGoogle ScholarCrossref
5.
Schneider  C.  The Practice of Autonomy: Patients, Doctors, and Medical Decisions. New York, NY: Oxford University Press; 1998.
6.
Braddock  CH  III, Edwards  KA, Hasenberg  NM, Laidley  TL, Levinson  W.  Informed decision making in outpatient practice: time to get back to basics.  JAMA. 1999;282(24):2313-2320. doi:10.1001/jama.282.24.2313PubMedGoogle ScholarCrossref
7.
Whitney  SN, McGuire  AL, McCullough  LB.  A typology of shared decision making, informed consent, and simple consent.  Ann Intern Med. 2004;140(1):54-59. doi:10.7326/0003-4819-140-1-200401060-00012PubMedGoogle ScholarCrossref
8.
O’Connor  AM, Wennberg  JE, Legare  F,  et al.  Toward the “tipping point”: decision aids and informed patient choice.  Health Aff (Millwood). 2007;26(3):716-725. doi:10.1377/hlthaff.26.3.716Google ScholarCrossref
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    4 Comments for this article
    EXPAND ALL
    Ethical and Good Practice
    Edward Schor, MD | Stanford School of Medicine
    Shared decision-making is certainly recommended on ethical grounds, but there are practical underpinnings to that activity. Previous research on shared decision-making has shown that it increases patients' adherence to the treatment plans and thus improves clinical outcomes. When patients' outcomes are less than expected, physicians who have not truly partnered with patients and have not provided appropriate self-management supports share responsibility for poor outcomes.
    CONFLICT OF INTEREST: None Reported
    Enlightened SDM
    R Reginald, MA | OCC
    Shared Decision Making is a concept whose time has come. However, to some patients, medical terminology is analogous to ancient Latin. One needs to know that he/she has truly communicated the options available in terms understandable to patients. Towards this end, the physician might consider recommending videos which are made of surgical (or other) procedures done by personnel (doctors, PA’s, nurses) at one’s facility. (Obviously, permission would be obtained from the patient on which the procedure was performed and filmed.) These videos could be made available for the prospective patient to view. The video would show all aspects of the procedure from prep through recovery. After viewing the video, the patient would then be truly informed re his/ her proposed procedure. Patient concerns could then be formulated and addressed based upon patient knowledge of what would actually happen at that facility. The mystique and fear would be eliminated, and the patient would actually know what was going to occur. Another benefit to these videos is that they virtually eliminate the possibility for the patient stating, "I wasn't informed regarding …." Are videos also a concept whose time has come?
    CONFLICT OF INTEREST: None Reported
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    Shared Decision Making is Often Highly Dependent on Context and Venue
    Donald DeNucci, DDS | Research Consultant
    I learned late in my career as a dental surgeon that shared decision making is highly contextual and may not be appropriate in certain circumstances. As a staff periodontist in one of the nation’s largest health care systems, I was asked by my Service Chief early one morning to attend to the Chief of Cardiology’s painful and infected molar. The cardiologist arrived in the dental clinic both fearful and in significant pain. I seated him in the dental chair and administered local anesthesia which significantly reduced his discomfort. Feeling compelled to present my senior colleague with several treatment alternatives for his compromised tooth including extraction, I launched into a detailed discussion of each. My colleague politely stopped me and said, “I’m vulnerable right now and incapable of making a decision. Please do whatever you think is best of me”. I extracted the tooth. Our patients, regardless of their educational or socioeconomic status, expect that we possess the expertise and knowledge to make decisions that are in their best interests. This should not be ignored or forgotten in the rush to deploy “shared decision making” as an overarching maxim in clinical care. To do so is an abrogation of our responsibility to our patients.
    CONFLICT OF INTEREST: None Reported
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    Shared Decision Making, To The Extent That Patients Desire, Should be Routine and Not an Add-on
    Andy Tan, PhD, MPH, MBA, MBBS | Dana-Farber Cancer Institute
    The suggestion in this Viewpoint that SDM should be prioritized for certain decisions and not others could be an impediment to realizing SDM in routine clinical practice rather than enhancing the practice of SDM. We need to create the normative expectation that offering SDM, to the extent that patients desire, is simply part and parcel of routine care, just as widely as we use the SOAP note (Subjective, Objective, Assessment, and Plan) to document history, signs, findings, and care. SDM should not be something special, optional, or an additional burden to the responsibilities of clinicians and providers. It is well within their duty of care owed to their patients to ensure that patients are involved in decisions about their care, as much as they wish to be involved, bringing together both clinicians' expertise of evidence-based care and patients' expertise of their own bodies as co-equal partners. Medical, nursing, PA and health professional training and also continuing education and accreditation could ensure that SDM is taught, assessed, and reinforced just as all other clinical skills are treated. By embedding SDM as a routine skill that is expected of all clinicians and providers, we will have a higher likelihood of achieving "No decision about me, without me" as the norm rather than the exception.
    CONFLICT OF INTEREST: None Reported
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