Shared Decision Making With Vulnerable Populations in the Emergency Department

Abstract

The emergency department (ED) occupies a unique position within the healthcare system, serving as a safety net for vulnerable patients, regardless of their race, ethnicity, religion, country of origin, sexual orientation, socioeconomic status, or medical diagnosis. Shared decision making (SDM) presents special challenges when used with vulnerable population groups. The differing circumstances, needs, and perspectives of vulnerable groups invoke issues of provider bias, disrespect, judgmental attitudes, and lack of cultural competence, as well as patient mistrust and the consequences of their social and economic disenfranchisement. A research agenda that includes community-engaged approaches, mixed-methods studies, and cost-effectiveness analyses is proposed to address the following questions: 1) What are the best processes/formats for SDM among racial, ethnic, cultural, religious, linguistic, social, or otherwise vulnerable groups who experience disadvantage in the healthcare system? 2) What organizational or systemic changes are needed to support SDM in the ED whenever appropriate? 3) What competencies are needed to enable emergency providers to consider patients’ situation/context in an unbiased way? 4) How do we teach these competencies to students and residents? 5) How do we cultivate these competencies in practicing emergency physicians, nurses, and other clinical providers who lack them? The authors also identify the importance of using accurate, group-specific data to inform risk estimates for SDM decision aids for vulnerable populations and the need for increased ED-based care coordination and transitional care management capabilities to create additional care options that align with the needs and preferences of vulnerable populations.

Shared decision making (SDM) has great potential to reduce health disparities since it may empower vulnerable populations to better understand treatment options and tailor decisions to their individual preferences, thus improving the quality of the care they receive.¹ Patients are part of a “vulnerable population” when they share a condition, situation, or set of characteristics that interacts with the environment, context, system, or society in a way that adversely affects their ability to obtain the resources necessary to attain and sustain good health.^2,3 This disadvantage might be temporary or permanent, depending on the circumstances.

It is well known that there are intransigent health disparities among groups of vulnerable patients due, in part, to differential experiences in the healthcare system and disproportionate suffering from increased chronic and acute disease burden.^4,5 Despite the recent implementation of U. S. healthcare insurance reform, the emergency department (ED) remains the only available source of care for many vulnerable and disenfranchised individuals.⁶ Because of its unique position within the healthcare system and the federal legislation protecting rights of patients to access emergent medical care, the ED continues to serve as a safety net for all vulnerable patients, regardless of their race, ethnicity, religion, country of origin, sexual orientation, socioeconomic status, or medical diagnosis.⁷ As ED providers adopt SDM approaches, they must consider the differing circumstances, needs, and perspectives of these groups, many of whom disproportionately use the ED for care.^8,9

RACE AND ETHNICITY

Significant and persistent disparities in disease rates and health outcomes for certain racial and ethnic groups have been well documented; these need to be addressed in shared decision making for vulnerable populations. In particular, Blacks, Latinos, Native Americans, Alaskans, and Hawaiians suffer disproportionately from many conditions including cardiovascular diseases, stroke, diabetes, asthma, influenza, and pneumonia.¹⁰ Racial and ethnic minorities have excess morbidity and mortality, as well as decreased life expectancy, at every level of socioeconomic status.^4,10 Because of their excess morbidity and mortality, data derived from clinical trials regarding the risks and benefits of various diagnostic and treatment strategies may not be applicable to these groups. Accurate, group-specific information on disease incidence and prevalence, as well as racial/ethnic differences in treatment efficacy, should be used whenever they are available, in explaining the various options when engaging in SDM.

A full discussion of the multifactorial causes of racial/ethnic health disparities is beyond the scope of this paper; however, there are aspects particularly relevant to SDM in ED settings.¹¹ According to the Institute of Medicine Report, Unequal Treatment, “stereotyping, biases and uncertainty on the part of healthcare providers all contribute to unequal treatment.”⁴ The report explains that certain types of situations promote these biases—those with time pressure, incomplete information, and high demand on attention and cognitive resources; these are conditions almost invariably present in the ED. Provider behavior that reveals implicit bias or explicit stereotypes may evoke responses of mistrust in minority patients. Patients may also hold beliefs, attitudes, or stereotypes toward providers, independent of provider behavior, that adversely impact provider–patient communication.^12-15

Deliberation of choices inherent with SDM requires partnership between patient and provider and may be more difficult among populations with less trust in the healthcare system.¹⁶ Power differentials between providers and patients can inhibit SDM. Patients raise concerns about providers “talking down” to them¹⁷ and feeling they are unable to express a lack of understanding.¹⁸ These effects may be strongest in those with limited health literacy,^16,18 emphasizing the challenge of providing information at an appropriate level without being perceived as condescending. Implicit bias has been documented across a wide range of healthcare settings,¹⁹ including the ED.²⁰ Implicit bias “occurs without conscious awareness and is frequently at odds with one’s personal beliefs,”²¹ but may still result in stereotyping.¹⁹ This bias could affect communication and interaction across all three domains of SDM: information sharing, deliberation/recommendation, and decision making.¹⁹ Assumptions about class and education may also limit provider’s information sharing, with minority patients being less likely to report doctors discussing clinical experience and research, but having no differences in discussions of cost.²²

CULTURE AND RELIGION

Understanding acculturation and nativity as factors influencing individual preferences within groups may impact a patient’s decision-making preference.¹⁶ People from different cultural and religious backgrounds may have differing norms, values, patterns of communication, beliefs about health and illness, and approaches to decision making.^23-26 The U.S. healthcare system is often ethnocentric in the way it imposes its attitudes toward illness, injury, and individual autonomy without considering the traditional beliefs and health practices embraced by many patients seen in the ED and assumes that the decision maker will be the individual patient, perhaps in consultation with family members. In some cultures, a woman may defer decision making to her father or husband; in others, all individuals will defer to an elder or chieftain. African American patients report the importance of “being heard” and having their specific concerns addressed by the provider as part of a SDM strategy, yet Caribbean Americans or recent immigrants from Africa may have other cultural influences, for example, greater expectations for physicians to make treatment decisions. Some cultures, including Chinese-speaking patients, instill complete faith in their traditional healer or physician’s judgment, making SDM ineffective in this population (KM N. DECODE [DEcisions COmpartidas DEpartamento de Emergencias] Shared Decisions in ED, unpublished, personal communication, 2016). It is important not to make assumptions about culture based on preferred language or self-identified race as individuals demonstrate a spectrum of conforming to their cultural beliefs. Physicians require cultural competency when conducting SDM in vulnerable populations.

LIMITED ENGLISH PROFICIENCY

The most recent report from the American Community Survey (2009–2013) shows that more than 380 languages are currently spoken in American homes.²⁷ Individuals who do not speak English as their primary language and who do not speak and understand English very well are defined as having limited English proficiency (LEP). Patients with LEP who require interpreter services have significantly more ED visits and hospitalizations than patients who do not require interpreter services.^28-30 Despite the requirements of the National Standards for Culturally and Linguistically Appropriate Services in Health and Health Care, originally promulgated in 2000 and most recently updated in 2015,^33,34 appropriate interpreter services may not always be immediately available in the ED. Patients with LEP pose special challenges to the use of shared decision making. It is important that culturally and linguistically fluent interpreters be used.^33,34 Providers who do not have that level of fluency should not use their own second-language skills, as is often done in clinical encounters. Additionally, it is not optimal to simply translate SDM clinical decision tools into other languages.³⁵ Ideally, SDM materials and decision aids should be specifically developed for each LEP population.

SOCIOECONOMIC DISADVANTAGE

Individuals who are uneducated, unemployed, uninsured, undocumented, or undomiciled face both practical and attitudinal barriers to obtaining high-quality healthcare.³⁶ These may affect patients’ health status, access to medical care, and ability to navigate the healthcare system.^37-41 Additionally, all of these groups have increased rates of ED utilization.^9,10,40,41 Judgmental attitudes from providers, even if not explicitly expressed, negatively affect physician–patient trust. For example, patients may be regarded as noncompliant, irresponsible, or unconcerned when social, financial, or organizational barriers shape their behaviors. Socioeconomic disadvantage may also affect patients’ ability to participate in decision making, to articulate their values and preferences, or to complete outpatient treatment plans after ED discharge. This is particularly true for patients who are being trafficked or are incarcerated or in police custody.^42-44

Shared decision making in the ED setting among patients with socioeconomic challenges may be inhibited by a perceived power differential between physicians and their patients, beyond that experienced by more affluent patients. While many patients are able to articulate their view of healthcare as a service, the impact of a perceived inherent power differential may manifest in various modes of patient behavior that create significant barriers to effective communication with the ultimate outcome of decreased participation by the patient in SDM.^45-48 The patient may fail to articulate their preferences and values and to participate in the decision-making process. In the absence of patient participation, even an emphatic physician may fail to present options that best suit patients’ preferences and values.

GENDER IDENTITY AND SEXUAL ORIENTATION

Individuals who self-identify as lesbian, gay, bisexual, transgender, intersex, and questioning (LGBTIQ) have historically faced discrimination, marginalization, and stigmatization throughout society, including when interfacing with the healthcare system. A lack of provider awareness, paucity of health-related data, and lack of research regarding their healthcare needs all contribute to frequent negative experiences with the healthcare system, resulting in avoidance and mistrust of providers.^49-53 Lack of knowledge and/or experience treating these individuals could potentially translate to provider attitudes of disapproval or discomfort that impede or prevent attempts at using SDM. Additionally, inherent biases toward patients may impede information exchange, which may result in ignored evidence, preferences, or general information. Removing these impediments to SDM is essential for clinicians to properly understand and elicit their patients’ specific preferences and needs, so that the LGBTIQ population engages in SDM freely and without prejudice. Strategies and decision aids may be developed with patient representatives from these populations for diseases and conditions common among the unique subgroups for maximal impact.

DISEASE STIGMA

Just as some individuals experience bias or discrimination based upon their race or gender identity, patients with certain diagnoses or conditions face special barriers to obtaining equitable care due to social stigma. The negative consequences of stigma associated with HIV/AIDS, psychiatric illness, substance abuse, anorexia and bulimia, sickle cell anemia, and certain physical disabilities are well described.^54-60 For example, sickle cell disease patients were informally interviewed for participation in a patient and physician panel on SDM in the ED with participants’ experiences echoing the literature recounting pervasive stigmatism that damages doctor–patient relationships.^58-60 One participant recounted how an emergency physician after initial contact, ordered pain medications and blood work, and later admitted her to the hospital even though her pain was largely relieved. The admitting physician informed her that the ED physician had concern for drug-seeking behaviors since she seemed comfortable but requested IV opioids with the admission decision based on an elevated reticulocyte count. She felt insulted and marginalized. She was in a large amount of pain but had used proven distraction techniques such as playing video games on her phone to tolerate her symptoms. The emergency physician interpreted her cell phone use as a sign that her pain was not real while the patient relayed that she frequently had high reticulocyte counts and would have appreciated being involved in the decision to admit because she felt safe following up with her hematologist as an outpatient. This case exemplifies how special consideration should be given to addressing disease stigma issues when developing or implementing SDM processes.

MITIGATION STRATEGIES AND FUTURE RESEARCH

Despite its potential to improve the patient experience of care, SDM with vulnerable populations presents special challenges since SDM requires 1) clear communication between physicians and patients; 2) transmitting accurate information regarding the risks, benefits, and alternatives of each diagnostic or therapeutic option; 3) conveying information so that it may be understood by patients and surrogate decision makers; 4) patients articulating their preferences and values; and 5) competency from physicians to conceptualize how to navigate patients toward selecting treatment options that best match their patients’ preferences and values. It is imperative that physicians maintain respect and be nonjudgmental during SDM to elicit patient engagement and trust, and patients must actively participate in the SDM process. These conditions may be particularly difficult to achieve when working with vulnerable populations particularly in the ED where compressed time and competing demands often interfere with effective patient communication and interactions. In the sickle cell disease case, a SDM model that incorporates factors relevant to the decision about what treatment modalities to use for acute pain (e.g., risks and benefits of intravenous vs. subcutaneous vs. oral administration, opioids vs. nonopioid analgesics), admission risks and benefits, and sources of physician bias related to using opioids for individuals who appear comfortable could potentially mitigate bias from disease stigma.

Alternatively, if a middle-aged homeless man, recovering from alcohol addiction, is offered an admission/observation stay versus discharge with close follow-up for community-acquired pneumonia, many factors might influence the decision. Comorbidities for this patient include type II diabetes mellitus and hypertension. Noting the time is 3:15 pm, he states that he needs to leave by 4 pm if he wishes to keep his bed at his residential recovery house. A case for inpatient observation is made from his potential inability to adhere to medication regimens, monitor for changes in symptoms, and access transportation to return to the ED. A concerned, well-meaning physician may discuss the benefits of admission in the setting of the aforementioned barriers. Likewise, the patient may articulate that his current path to sobriety is more important to him. Rather than engaging further in “challenging” physician advice, the patient may simply think to himself, “Next time I just won’t come.”

To avoid this dilemma, a physician empowered to offer a treatment plan aligned with the patient’s preferences would have access to 1) a case manager to provide vouchers and in-hospital filling of prescriptions prior to ED discharge; 2) brief assignment of a home health nurse to check on the patient at his recovery house once daily over the next 48 hours; 3) a cab voucher for use by the discharged patient to return to the ED outside of the hours of bus operation or facilitation of patient sign up for a City Mobility Van (frequently offered by many cities for transportation to healthcare-related needs for qualifying patients). While these options may not be available at all EDs nationally, these types of resources are increasingly being offered across the country, particularly those adjacent to inner city or socioeconomically–disadvantaged neighborhoods.

A useful adjunct to assisting physicians with SDM in vulnerable populations is use of decision aids. Decision aids are known to increase patient knowledge, reduce decisional conflict, and increase patient involvement in SDM. Given these findings, decision aids could have a potentially significant impact on healthcare disparities.⁶¹ Although decision aids are being tested in the ED setting,^62,63 none has been explicitly adapted for vulnerable patients. With a user-centered approach, a patient representative of the vulnerable population, for example, from undomiciled urban populations, could be involved in the design and testing of these tools, that at least take in consideration the specific context, culture, and language of each patient. One might design an aid that considers the socioeconomic context in addition to the clinical implications of decisions.

It is important to note that it is often difficult to find accurate, group-specific data on the risks, benefits, and outcomes of diagnostic and therapeutic options presented by clinical decision aids. Using standard risk calculations for populations who experience excess morbidity and mortality from a particular clinical condition may result in giving faulty information to patients. Careful collection of data on race, ethnicity, language preference, gender identity and sexual orientation, and socioeconomic status should be embedded into research studies of all types, as well as in all clinical databases to allow extraction of accurate, group-specific data to guide SDM as well as interventions to eliminate healthcare disparities.⁶⁴

The literature on issues of bias and trust in SDM is limited and mostly drawn from primary care, endocrinology, and oncology. More work is needed to understand the effects of implicit bias on emergency care communication and the factors driving the decision to pursue a SDM strategy. Such work should focus not only on the population of interest, but also on the clinical scenario, as there is some suggestion that decision ambiguity interacts with race and bias in determining optimal decision-making strategy.^65,66 Whether all patients should be asked about decision-making preferences and best practices for standardization of information sharing and for deliberation and decision making remain to be described. Consideration of the special needs and challenges of vulnerable populations should inform such investigations and researchers should make every effort to foster interest in promoting SDM with community representatives. Community needs assessments and focus groups conducted among vulnerable population groups may help to ascertain how physicians, and the broader healthcare system, can help these patients overcome the barriers they encounter when trying to engage in SDM.

Further research is needed on systems and guidelines to support SDM in the ED in ways that limit potential for bias. The effects of SDM strategies on trust in the healthcare system, disparities in care provision, and patient outcomes will need to be characterized. Investigations of training methods, such as the use of simulated patients for learning SDM strategies,⁶⁷ have shown some promise in the literature, but require additional investigation. Development of culturally appropriate SDM methods will require close collaboration between culturally competent researchers and representatives of vulnerable populations. Community-engaged programs to help identify patients’ main concerns and problems should be developed with patient representatives and identified solutions should be implemented systematically.

Emergency department–based care coordination and transitional care management will facilitate additional diagnostic and treatment options that can be offered to patients in the ED. Such services (e.g., case managers, medication vouchers, nontraditional home health nursing provision, mobile integrated healthcare) may require upfront investments of resources from healthcare institutions and insurers but may prove to be particularly effective for vulnerable and disenfranchised populations. Mixed-method studies will be needed to understand the optimal design of such services and evaluate their cost-effectiveness in reducing potentially avoidable admissions for vulnerable populations.

Cultural awareness and competency training for physicians and medical students should be mandatory and introduced in every emergency medicine residency curriculum. Empathic SDM should be practiced by focusing attention to verbal and nonverbal patient cues about the desired degree of engagement. Understanding how patients’ individual beliefs and customs interact with their community and culture could help clarify their values and preferences, as well as helping the physician present options for care.

The research agenda for developing culturally competent shared decision-making strategies and tools in ED settings will require that the following critical questions be addressed:

1. What are the best processes/formats for SDM among racial, ethnic, cultural, religious, linguistic, social, or otherwise vulnerable groups who experience disadvantage in the health care system?

2. What organizational or systemic changes are needed to support SDM in the ED whenever appropriate?

3. What competencies are needed to enable emergency providers to consider patients’ situation/context in an unbiased way?

4. How do we teach these competencies to students and residents?

5. How do we cultivate these competencies in practicing emergency physicians, nurses, and other clinical providers who lack them?

SUMMARY AND CONCLUSIONS

The ED occupies a unique position within the healthcare system, serving as a safety net for vulnerable patients, regardless of their race, ethnicity, religion, country of origin, sexual orientation, socioeconomic status, or medical diagnosis. As ED providers increasingly adopt shared decision-making approaches, they must consider the differing circumstances, needs, and perspectives of vulnerable groups who disproportionately use the ED for care. A research agenda that includes community-engaged approaches and mixed-methods and cost-effectiveness analysis is needed to identify best practices for shared decision making among vulnerable groups, organizational and systemic changes needed to support shared decision making, and competencies to minimize bias in the use of shared decision making. Increased ED-based care coordination capabilities and resources to support the ED-to-home transition are needed to create additional care options that align with the needs and preferences of vulnerable populations. It is the duty of the healthcare system to create a safe environment for open communication to facilitate shared decision making with all patients. Fulfilling this research agenda is the first step in realizing this goal.