Fernanda Bellolio1, Erik P. Hess2 and Christopher R. Carpenter3 1 Department of Emergency Medicine, Mayo Clinic, Rochester, MN, USA 2 Vanderbilt University, Nashville, TN, USA 3 Department of Emergency Medicine, Washington University School of Medicine, St. Louis, MO, USA Shared decision‐making (SDM) is a conversational dynamic in which clinicians and patients discuss the best available evidence relevant to a medical decision.1 It is a collaborative process that allows patients (in conjunction with their caregiver or care partner) and their clinicians to make healthcare decisions together, taking into account the best scientific evidence available, as well as the patient’s values and preferences. In SDM, both parties share information: the clinician offers evidence‐based options and describes the potential harms and benefits of each choice, and the patient expresses his or her preferences and values. SDM is a key component of patient‐centered care.2, 3 A patient’s ability to engage in conversation and to understand the risks and benefits of diagnostic testing options is essential to effective SDM. In urban U.S. emergency departments (ED) the average health literacy is at a seventh grade level and that of rural EDs remains unquantified.4, 5 Although an objective assessment of health literacy or numeracy is not routine in the ED (or any medical) settings, the clinician must elicit the patient’s understanding of risks and benefits during the conversation to ensure patient comprehension.6 There are often clinical scenarios in which more than one course of action is medically reasonable. Even in the chaotic ED in scenarios such as these, clinicians can engage patients in SDM.10 SDM is appropriate for key decisions where there are multiple options equally supported by the weight of evidence. SDM is not appropriate when there are clinical pathways or scenarios in which there is clearly a single effective and appropriate decision, like, for example, obtaining an electrocardiogram (ECG) in a middle‐aged patient presenting to the ED with acute retrosternal chest pain. (Figure 59.1) There are several factors to consider when determining the appropriateness of SDM for diagnostic testing:6 To engage in SDM we need to know the probability that the patient might have the disease. When available, clinical decision rules are a good tool to determine pretest probability (see Chapter 4). Tests that will not meaningfully alter the pretest probability should not be performed and therefore should not be considered as part of a SDM discussion. A situation in which the evidence clearly suggests an optimal diagnostic approach is different from a situation in which there is equipoise between two or more different diagnostic approaches. Of these only the second scenario is appropriate for SDM.6 Both benefits and harms of diagnostic tests as well as alternatives should be presented and contemplated in a way that patients can understand. Potential harms with imaging might include exposure to ionizing radiation, cost, and incidental findings that may lead to potentially harmful downstream testing.12 Harms to the healthcare system at large (e.g., expensive, low‐yield tests that contribute to the high cost of healthcare) should be considered. Clinicians may not consider SDM an option for situations in which there is only one testing option, but in these situations, there is still a decision to be made: to test or not to test.6 Engaging patients in a SDM discussion provides patients the information they need to make decisions that affect their desired health outcomes. Patients want to be involved in decisions regarding their care and doing so respects their autonomy.13, 14 SDM in emergency medicine (EM) can improve the quality, safety, and outcomes of ED patients. Evidence alone is never sufficient to make a clinical decision, and the better the quality of the available evidence, the higher quality of the decision. SDM has been reported to improve patient satisfaction15 and reduce malpractice claims.16, 17 The process of SDM can occur informally, via conversation, or in a more standardized fashion using decision aids. Decision aids are evidence‐based tools designed to increase patient understanding of medical options and possible outcomes, facilitate conversation between patients and clinicians, and improve patient engagement. These tools are developed for a particular decision‐making context and identify the social, emotional, environmental, and cultural barriers that may need to be addressed for conversations to occur.18 Decision aids increase patient involvement and patient–provider communication, improve patient knowledge and realistic perceptions of outcomes, and do not adversely affect health or patient satisfaction.18 Decision aids are the most common tools used to support SDM in clinical encounters and have been shown to positively affect decisional quality7 and increase knowledge when compared to usual care.19 SDM can be used in different clinical settings during the continuum of care including: The goal of SDM is to ensure that patients are well informed, meaningfully involved in the decision‐making process, and receive tests and treatments concordant with their goals.9, 36 In this chapter, we focus our examples on the use of SDM for diagnostic testing. Tests are not perfect tools, and clinicians need to have a good understanding of the limitations of each test ordered. Clinicians should understand how to apply the results to the individual patient, and how a positive or negative test result alters the probability of having a specific diagnosis. As discussed in previous chapters, if a test will not change management, it should not be ordered unless there are extenuating circumstances. Diagnostic testing is used to determine the presence or absence of a disease. The tests can be used to rule in or rule out a disease (see Chapters 1 and 3). As the “front porch” of the hospital straddled between inpatient and outpatient resources, as well as the safety net for an often frayed and inaccessible medical system, the focus of EM is often to definitively exclude threats to life. Ruling out worst‐case scenarios has led to increasing rates of diagnostic test utilization without improved patient outcomes, as well as increased ED costs and incidental findings requiring further workup.6, 12 Reducing inappropriate utilization of advanced imaging is a research and public health priority.12, 37, 38 Sharing the diagnostic test accuracy and associated health care utilization with patients is beneficial and appropriate. Translating validated risk estimates to practice and engaging patients in care decisions through SDM might tailor testing to disease risk in a way that is acceptable to patients, clinicians, and policymakers.39, 40 A common scenario for SDM of diagnostic testing is a 55‐year‐old patient with hypertension and diabetes mellitus presenting with 2 hours of chest pain. He has a normal ECG and negative initial troponin. Your plan is to repeat the troponin at 2 hours (if using high sensitivity troponin) or 3 hours (if using a fourth generation assay). Subsequently, there are several equivalent options such as observation unit admission for cardiology consultation, consideration of stress testing, overnight observation, or dismissal home. You decide to use the history/ECG/age/risk factors/troponin (HEART) score pathway41 and the patient has a moderate risk score (see Chapter 21). You decide to engage the patient in SDM to reach consensus on the best next step for this patient. From the emergency physician’s point of view, the decision regarding admission versus discharge for chest pain patients at moderate risk for acute coronary syndrome relies on the concern of missing acute myocardial infarction. From the patients’ perspective, time spent in the ED and cost, are also concerns. Hess et al. compared the effectiveness of SDM with usual care in choice of admission for observation and further cardiac testing or for referral for outpatient evaluation in patients with possible acute coronary syndrome. SDM facilitated by a decision aid increased patient knowledge and patient engagement, decreased decisional conflict, and did not affect trust in the physician. Use of the decision aid took an average of one additional minute of clinician time, decreased the rate of admission to an observation unit for advanced cardiac testing, and decreased cardiac stress testing within 30 days of the ED visit. There were no major adverse cardiovascular events (MACEs) related to SDM.42 Patients presenting with a sudden onset, severe headache, and normal neurological exam represent a diagnostic challenge. Clinical decision rules exist to avoid missing potentially catastrophic diagnoses like SAH (see Chapter 46).35 Less than 10% of patients with thunderclap headache are diagnosed with SAH, and no single characteristic of the history or physical exam is sufficient to rule in or rule out SAH.33 A noncontrast CT of the head is extremely sensitive within the first 6 hours, and its sensitivity decreases over time.34 Patients presenting after 6–12 hours of initial symptoms represent the ideal group for SDM regarding diagnostic testing. Lumbar puncture appears to benefit relatively few patients within a narrow pretest probability range.33 CT angiography and no further testing are alternatives that need to be discussed with the patient.43 Another scenario is the care of a child with minor head trauma Parents want to be informed of the risks of tests their child might be exposed to.44 There are clinical decision rules available to guide the use of diagnostic imaging in the case of children with head trauma (see Chapter 11).45 These rules were incorporated into a decision aid and demonstrated the potential benefit of the use of the decision aid to facilitate SDM with parents of children with mild head trauma. A multicenter trial demonstrated increased parent knowledge, decreased decisional conflict, and increased involvement in decision‐making. The decision aid did not reduce the CT rate but decreased health care utilization 7 days after injury.31 Similar to the example of SDM for imaging in head trauma, SDM could apply to many decisions around diagnostic testing. Engaging patients in SDM with respect to diagnostic imaging has been viewed as an essential component of evidence‐based medicine.46–49 For example, in a young patient with abdominal pain concerning for renal colic, the added diagnostic certainty to identify a nonobstructive kidney stone in which noninterventional symptom management is the next step, might not be worth the radiation risk, cost, and time associated with abdominal CT imaging.50, 51 While clinicians who are unaccustomed to SDM may believe that patient satisfaction is always linked to more testing, this bias may be a fallacy in many situations.52, 53 Even during times of emergency, many patients value inclusivity in decision‐making.54 For example, more than one‐third of patients deferred imaging for pulmonary embolism based on low clinical probability and a D‐dimer less than twice the normal threshold in a hypothetical scenario, suggesting that SDM was acceptable to patients and may decrease imaging for pulmonary embolism.32 The access and use of additional testing to help make a diagnosis can lead to overutilization, increased unnecessary cost, and incidental findings. SDM in diagnostic imaging can help mitigate the issue of overutilization.49, 55 Diagnostic imaging has increased significantly over the last 15 years, and in a survey study emergency physicians reported that a significant proportion of advanced imaging studies were medically unnecessary, and likely obtained due to fear of litigation related to missing a low‐probability diagnosis.40 Factors to consider when engaging patients in SDM in the ED are the timing of the interventions, cost to patients and the health system, resource utilization (hospital admissions, return visits, imaging, laboratory tests, ED length of stay), and other circumstances such as language and cultural differences, vulnerable populations, low literacy, and numeracy.56 Some decisions vary by practice setting (academic versus community versus private), as well as incentives (bundle payments) risk tolerance, and the availability of close follow‐up. SDM is applicable to vulnerable populations, and the use of accurate, group‐specific data to inform risk estimates is recommended.56 The differing circumstances, needs, and perspectives of each patient need to be considered when sharing decisions.56 Recommendations to improve health communication so that patients can participate in SDM include assessment of literacy, use of plain language at a fourth to sixth grade level, use of multiple forms of communication (written, oral, and visual), encouragement of questions, and confirmation of patient comprehension.57 When providing numeric information, report probabilities in terms of numbers rather than percentages (e.g., 1 in 20 rather than 5%); keep the denominator consistent (e.g., do not change between 1 in 10 and 1 in 1000); and avoid discussing relative risk.6 Another consideration is the risk tolerance of patients and clinicians as discussed in Chapter 1. Individual clinician’s risk tolerance may evolve over a career by increasing in relationship to recent bad outcomes. A potentially missed diagnosis, the medico‐legal environment, hospital reimbursement systems, and incentives can affect risk tolerance. Although generations of physicians undoubtedly view their impactful interactions with patients during a health emergency as consummate and compassionate decision‐making that is shared between the clinical team, patient, and family, the science of SDM is something more.11, 58 Consequently, misconceptions about SDM are common. SDM is not synonymous with informed consent, which is a legal construct focused on the benefits and harms of individual approaches to a medical situation.59 SDM melds patient’s values and preferences with the balance of risks and benefits. Similarly, the motivation for SDM is not to save resources or deny care, but rather to ensure that medical or surgical decisions do not occur without the individual most affected to be fully informed and engaged – “nothing about me, without me.” SDM is also not a substitute for clinician guidance to educate and counsel patients through complex scenarios and possible consequences amidst a sea of uncertainties. In other words, SDM is not a vehicle to offload malpractice risk of decisions to patients. Clinicians leveraging SDM are not abandoning patients to make decisions alone, but rather creating opportunities for patients to collaborate in the conversations to the extent they feel comfortable.60 Finally, SDM is not a transformation of medicine into a restaurant buffet in which patients select from a menu of options without regard to futility or biological plausibility. Clinicians and patients will often require education and experience regarding what SDM is and what SDM is not as EM adapts to this evolving paradigm. Barriers and facilitators of effective communication in SDM on diagnostic testing are displayed below. These barriers and facilitators may be influenced by patients’ cultural background and health literacy.6 Source: Adapted from [6]. SDM can be beneficial for patients, providers, and healthcare systems and should be incorporated in clinical practice. Incorporating SDM for diagnostic decisions in the practice of EM provides the information needed for patients and clinicians to make decisions that affect patients’ desired health outcomes. SDM in EM has the potential to improve quality, safety, and outcomes in ED patients, while potentially reducing overall healthcare costs by eliminating medical waste catalyzed by malalignment of patient priorities with test and treatment options.61 In order to attain the full potential of SDM, medical educators will need to adapt,62 decision aids for more common scenarios need to be developed,63 meaningful and sustainable funding opportunities must accelerate,64 and implementation science must be utilized.65
Chapter 59
Shared Decision‐Making in Diagnostic Testing
What is SDM?
When is it appropriate to engage a patient in SDM?
Why use SDM in EM?
What are decision aids?
SDM in clinical settings
Examples of SDM for diagnostic testing
Chest pain
Thunderclap headache
Head trauma
Considerations for SDM
Misconceptions about SDM
Barriers and facilitators of SDM
Barriers
Facilitators
Being in poor health
Limited debility and intact cognition
Cognitive impairment (e.g., dementia, intoxication)
Prior exposure to a similar process
Timing relative to the disease course (e.g., will the diagnostic test change management)
Physicians who effectively listen to patients, respect their concerns, and seek to understand individual needs
Power imbalance in the patient–clinician relationship
The presence of an advocate or caregiver
The desire to be a “good” patient and perceived benefits that might arise (e.g., lack of conflict in the encounter)
Perception that there are “right” and “wrong” decisions
Perceived unacceptability of asking the physician questions and raising options
Summary