Shared decision-making (SDM) depends on high-quality communication between the physician and the decision maker. The shared beliefs, values, behaviors, and traditions that make up an individual’s culture affect the way he or she communicates and receives information and impacts complex decision-making. Cultural differences between medical providers and patients or their families may lead to wrong assumptions, disparate priorities, a lack of shared goals, and conflict. When it comes to SDM in cross-cultural encounters, we recommend that clinicians acknowledge their own cultural beliefs and values (including those stemming from the culture of medicine), maintain awareness of potential biases and assumptions, appreciate the complexity of patient and family identities and narratives, practice cultural humility, understand the moral relevance of culture, and respect patient and family preferences for SDM. We present a case that illustrates many of these issues.
Shared decision-making (SDM) that is patient and family centered is increasingly accepted as the optimal approach to making medical decisions.1,2 This framework is heavily dependent on the quality of communication between the physician and the decision maker (eg, patient or parent) and is therefore particularly vulnerable to the complexities that are introduced when the provider and the decision maker come from different cultures. In this article, we offer a closer look at the concept of culture as it relates to communication and decision-making, with special attention being paid to the pediatric context. Specific recommendations are provided to improve cross-cultural communication to optimize the process of SDM.
Mateo (not his real name) was 3 years old when he underwent a stem cell transplant for relapsed leukemia. His posttransplant course was complicated by severe graft-versus-host disease (GvHD) of the gastrointestinal tract that was unresponsive to aggressive treatment, including both standard and experimental therapies. His abdominal pain was so intractable that he required heavy sedation in addition to high-dose opioids.
Mateo’s parents were in their early 20s and had high school educations. They spoke only Spanish and preferred interacting with Spanish-speaking providers, of whom there were few. The staff in the PICU found it difficult to form a connection with either parent. In addition to the language barrier, there was a general perception that neither parent was engaged with Mateo. They rarely touched him even before the use of heavy sedation, when Mateo was frequently awake and crying in pain and distress. His mother was almost always present but spent the bulk of the time lying on the couch provided for caregivers toward the back of the room either sleeping or using her smartphone. On Sundays, Mateo’s mother left his bedside to spend time with Mateo’s 5-year-old brother, and his father stayed with him, usually sitting in a chair several feet away from his bed watching sports on the television. Neither parent asked many questions or seemed overly concerned by the increasingly pessimistic medical updates provided by physicians.
After several months in the PICU, all treatment options to address Mateo’s GvHD were exhausted, and he demonstrated no meaningful signs of improvement in his overall clinical status. Providers from the PICU and the stem cell transplant team agreed that there was no reasonable hope that Mateo could survive and that given his persistent suffering (as demonstrated by an inability to tolerate weans in sedatives or opioids), the most appropriate course of action was to withdraw life-sustaining therapies and allow a peaceful death. They also agreed that Mateo’s parents were unlikely to ever be able to actively choose withdrawal given what was perceived to be their general level of passivity and the fact that they had declined to make any such decision over the past month. Therefore, the team agreed to provide a strong, unified recommendation for the withdrawal of life-sustaining therapies and to allow the parents to acquiesce via the absence of dissent.3,4
It surprised everybody except for the Spanish-speaking chaplain when Mateo’s parents pushed back against the providers’ recommendation. They spoke passionately about their love for their son, their belief that his strength and fighting spirit would allow him to recover, and their commitment to “not give up on him.” The medical team agreed to continue supportive care and explained that if Mateo stabilized, he would need a tracheostomy and long-term mechanical ventilation. The parents agreed to this intervention. Approximately 1 month later, Mateo’s GvHD symptoms had diminished and his lung function had improved. He underwent tracheostomy placement. Over the next several weeks, his sedation was weaned and ventilatory support was gradually decreased. He demonstrated extended periods of wakefulness and engagement, during which he was clearly comfortable and regaining strength. He was transferred to the stem cell transplant unit and then eventually to a nearby rehabilitation facility. He remained dependent on parenteral nutrition, but ultimately, mechanical ventilation, opiates, and sedatives were discontinued. His parents successfully learned tracheostomy care and were actively engaged with him and the rehabilitation team.
This case illustrates several layers of cultural differences and reveals the difficulties in communication and decision-making that may occur when cultural values are incongruent. Culture has traditionally been defined as “the shared values, beliefs, and behaviors by which people interpret life events.”5 Although medical organizations have embraced the idea of “cultural competence” as being important to patient care, such programs often have a narrow view of culture as arising from one’s race, ethnicity, or religion. Although these characteristics are certainly important sources of cultural differences, a broader interpretation reveals a host of others: socioeconomic status, geographic location, type and extent of education, and community or family traditions, to name a few. In addition, globalization, among other forces of change, has resulted in the erosion of many of the distinctive qualities and boundaries among cultures. Culture is no longer a static characteristic that can be studied and mastered; rather, culture seems to be fluid, subjective, and as multifaceted as the individuals within it.6 Moreover, a single individual may be influenced by or feel that he or she belongs to different cultures. For this reason, the concept of “cultural humility” has been suggested as a more fitting skill for health care providers to attain.7,8
Cultural differences are known to affect how patients receive information and express emotion, the degree of trust they feel in health care providers and institutions, and the types of information they deem to be important when making a decision.9 At the same time, racial, ethnic, and language disparities in the quality of communication and the degree of SDM are well documented.6,10 However, little evidence exists to guide best practices for clinicians when communicating with patients of various cultural and individual backgrounds.
In its idealized form, SDM involves a medical provider eliciting a patient’s beliefs, values, and knowledge and then sharing information about the patient’s current medical condition and the options for treatment and alternatives, each with its attendant risks and benefits, in a way that is relevant and can be clearly understood by that individual. The patient then weighs the information shared by the provider in the context of his or her own beliefs and values and makes a decision. In reality, SDM encompasses a spectrum, from decisions that are heavily directed by the physician, through decisions made jointly between the patient and the physician, to decisions made independently by the patient.11 The appropriate weight of each party in the equation varies with the clinical situation and the patient’s (or surrogate’s) preference.12,13
Fundamentally, this idealized construct of SDM reflects the core components of informed consent as well as important relational aspects of decision-making. Grounded in the ethical principle of autonomy, the concept of informed consent emerged to give respect to the individuals’ right to self-determination.14 Implementing informed consent requires a provider to identify the unique needs and preferences of the individual because what constitutes adequate information for individual autonomous decision-making is necessarily contextual. Consideration of cultural differences promotes autonomous decisions by ensuring communication of relevant information in a culturally sensitive manner, empowering each patient to express an authentic choice that is congruent with his or her unique values and beliefs. With this type of approach, providers also honor the ethical principle of nonmaleficence by seeking to avoid potentially serious harm that can arise when the collaboration between provider and patient is hampered by culture clashes and miscommunication.15
The SDM process can easily be impaired when assumptions are made about what is known, understood, or prioritized. Although assumptions are a real threat even when the provider and patient are from similar backgrounds, they are even more likely, and potentially more problematic, when cultural differences are present. When dealing with people from unfamiliar cultures, providers (consciously or subconsciously) may rely on stereotypes in an attempt to understand reactions, behaviors, and choices. These interpretations are highly likely to be incomplete or even completely wrong.8 In this way, cultural competence programs in which broad generalizations about certain ethnic or racial groups are taught may cause more harm than good.16 Instead, programs in which awareness of bias and avoidance of stereotypes are taught and those in which culture is conceptualized as part of an individual’s moral experience may be more effective.16,–18
In Mateo’s case, providers found it difficult to get to know his parents as individuals in part because of the language barrier and in part because they were quiet and unassertive. Despite good intentions and outward respect, the staff therefore tended to categorize or label Mateo’s parents in several ways that had unflattering and even disparaging connotations: young (and potentially immature), with limited education (and of uncertain intelligence), and withdrawn (and perhaps disinvested). Assumptions were made that impacted the way clinicians shared information and the approach and response to decision-making about life-sustaining treatments. Some providers believed that because of their Hispanic ethnicity, Mateo’s parents were more likely to defer to recommendations from the medical team. Even after the decisive care conference, staff continued to express distress about the plan for tracheostomy placement, assuming the parents would have trouble fulfilling the requirements for training in tracheostomy care.
Cultural differences contribute to disparate values and priorities and may therefore interfere with SDM in both outpatient and inpatient settings. For example, a family who refuses vaccines may identify with a culture that prioritizes “natural” approaches to optimizing health and preventing illness, which may or may not include religious beliefs or past experiences that contribute to a distrust of Western medicine. As another example, food and mealtime traditions are deeply embedded in culture, which can significantly hamper providers’ attempts to address obesity. In the hospital, cross-cultural tensions become more apparent as the decisions being faced become weightier, such as decisions about risky surgeries or withholding or withdrawing life-sustaining treatments. One poignant example of this relates to the variability with which those of different cultures treat the dying process. Those of some cultures prioritize remembering a person as alive and vibrant and discourage being present at the time of death; when parents leave the hospital before their child’s death, it may stir up strong emotions in hospital staff from Western backgrounds, who see this as abandonment. Respecting a family’s culture and ensuring that a child does not feel alone at the time of death requires a compassionate adaptation of traditional expectations.
Across a variety of practice settings, providers are likely to encounter cross-cultural tensions with families who hold different beliefs about the origin and meaning of their children’s illnesses or who disagree with providers about the proper role for the children in receiving medical information or participating in decision-making. Families from some cultures may even disagree with providers about the utility of SDM itself.19 Cultural differences between medical providers and parents or other caregivers may involve race, ethnicity, language, education, religion, or socioeconomic status and often some combination of >1 of those factors. Most of the time, patients and their families will be outsiders to the culture of medicine itself. Providers may be so steeped in medical culture that they fail to recognize the many assumptions they hold about shared understandings, values, and priorities.
Western biomedicine tends to be focused on the physical aspects of illness and disease to the neglect of psychosocial, emotional, and spiritual components. The focus is primarily on the patients as individuals rather than as members of families, communities, etc. There is a momentum toward technological and interventional therapies.20 All of these biases influence the expectations that providers have of patients and families who are engaged in an SDM process.
In pediatrics, these expectations take on special weight because of the unique role that parents hold as default surrogate decision-makers for their children. As pediatric providers, we expect parents to be at their children’s bedsides a majority of the time, to be present for rounds, to be available at any time for medical updates or informed consent conversations, to ask thoughtful questions, and to respect our expert opinions. In a sense, we expect parents to reflect a culture of collaboratively caring for a child who is sick and often struggle when parents do not demonstrate behaviors that are consistent with our expectations. We form expectations of norms for parents of children who are sick in the same way we frame other beliefs, influenced by our own individual experiences with other families of children who are sick. Yet in doing so, we miss that there may be reasons why parents don’t conform to the “parent of a sick child” culture; fear, language and knowledge barriers, and influences from cultures outside of medicine may all play a role. In Mateo’s case, for example, the family may have feared that touching him would make him worse. They might have needed permission to do more. They might have worried that their expression of emotion would be perceived as not being strong enough. In a process of SDM, providers would work to uncover their understanding of what it means to be a good parent to a child who is sick and may have challenged the health care team’s norms for parents of children who are sick.21
In 2009, feminist writer and activist Chimamanda Adiche22 gave a powerful technology, entertainment, and design talk (or TED talk) in which she described the concept of the “singular story” and the dangers that extend from stereotypes. Adiche22 argues that the singular story, in its incomplete nature, does not honor the complexity of human existence and impairs our ability to regard others with dignity. Within the context of SDM, the singular story may interfere with our ability to guide patients toward care that takes all aspects of their existence into account. In applying this concept to the case of Mateo, the singular story that medical providers told themselves about Mateo’s parents is that they would be unable to decide on withdrawal of life-sustaining therapies for Mateo because after several months of critical illness and an extended PICU admission, they had not clearly expressed any preferences for Mateo’s care nor had they expressed their perception of Mateo’s experience. The chaplain, however, had spent time eliciting this family’s heterogeneous story, in which the parents’ cultural tendency to be relatively reserved in communicating with health care providers, their belief in God’s granting of miracles through modern technology as dictated by their Christian faith, and their conviction that the parents’ duty is to remain hopeful and fight for their child’s life despite the odds were told. Over a series of regular visits in which active listening was the therapeutic intervention, the chaplain had been able to ascertain the parents’ deepest values as they pertained to their son’s health and wellbeing. In cases such as this, engaging interdisciplinary team members, such as those in chaplaincy, social work, and palliative care, leverages the expertise of those who have advanced training in communication to understand how patients’ cultures impact their values, goals of care, and medical decision-making.23,–25
Honoring the principles of SDM in practice requires flexibility and taking extreme care when eliciting contextual characteristics that are relevant to a particular patient or family. The following recommendations may be particularly useful to providers when considering cultural influences on the practice of SDM.
If we assume that our understanding (of a particular situation, ethical norms, or the world in general) is the only correct one, we will find ourselves in conflict with others on a regular basis.20 Feminist standpoint theory reminds us that we are all “situated knowers,” that is, what we believe we know is dependent on our social location and individual experiences.26 Regardless of whether we share the same racial, religious, socioeconomic, educational, or geographic background as our patients and families, we are always inherently operating within a cross-cultural dynamic because of the culture that medicine bears within itself. That culture is associated with its own language, values, and worldview, which will ultimately be distinctly different from those of our patients and families.
Beware of Homogenization
Often, we will take 1 aspect of our patients’ and families’ existence and use it to create a narrative to presumptively explain their reality from 1 vantage point. However, within each of our circumstances are multiple, heterogeneous truths that dictate our life experiences. Avoiding the singular story can help us to uncover the multiple truths and may reduce communication breakdown along cultural lines.22
Practice Cultural Humility
The concept of cultural humility goes beyond cultural competence to incorporate lifelong learning, inquisitiveness, and self-reflection and critique.7 It is especially important in the context of medical decision-making, in which power imbalances are always present. Cultural humility reminds us to ask questions and listen with an openness that helps us avoid the traps of cultural stereotypes and assumptions. Cultural humility also reminds us of the fluid nature of culture and the importance of revisiting the values, beliefs, and behaviors of patients and families, whose cultural influences may shift during the experience of caring for a child who is sick.
An element of the art of medicine lies in a consciousness of the cultural biases we carry as health care providers and the ability to transcend the differences between ourselves and our patients by finding points of human connection. Engaging our skills in empathy, the willingness to be present with our patients, to listen, and to genuinely attempt to understand what they are feeling, is a key component of this process.
Respect Patient Preferences for SDM
It is important that providers recognize that the spectrum of SDM may require varying participation on the part of the provider in different contexts. Individual patients and families will have different preferences for their level of involvement in decision-making and their desire for the provider to participate in or make medical decisions. Some will prefer high levels of patient- and/or family-directed decision-making, whereas others will prefer a high level of provider involvement and/or direction in decision-making. Both perspectives are likely to be deeply influenced by culture, and the most effective providers will be able to shift their level of involvement in decision-making on the basis of patient and family needs.13
Acknowledge the Moral Relevance of Culture
Although behaviors are a manifestation of culture, the essence of culture runs deeper than action to encompass powerful and defining moral experiences that are at the core of one’s identity.16 Failure to acknowledge culture as an important aspect of moral experience (for providers as well as patients and families) has important ethical and social implications. Such oversight risks underappreciating the foundation of SDM in informed consent and respect for persons. Moreover, it risks denying the individual’s inherent sense of connection to the social structures and communities that are essential to coping with a significant health care experience. Conversely, taking the time to understand the cultures, values, and beliefs of patients and families will help providers support the families in an SDM process that leads to well-informed and authentic decisions.
Effective SDM requires a recognition that individual beliefs and values, all of which are in some way influenced by culture, underlie complex decisions. Avoiding assumptions and giving careful attention to the complexities of interpreting cultural influences will optimize the process of SDM between providers and patients and/or families and further honor the goals of patient- and family-centered care.
Drs Derrington, Paquette, and Johnson contributed to the conceptualization and design of this article and the drafting and review of the manuscript; and all authors approved the final manuscript as submitted and agree to be accountable for all aspects of the work.
FUNDING: No external funding.
POTENTIAL CONFLICT OF INTEREST: The authors have indicated they have no potential conflicts of interest to disclose.
FINANCIAL DISCLOSURE: Dr Derrington received an honorarium from the Florida Bioethics Network for a speaking engagement; Dr Paquette received honoraria from the Society for Social Work Leadership in Healthcare and The University of Chicago for speaking engagements and reimbursement from the American Association for Clinical Chemistry (formerly the American Association of Clinical Chemists), none of which were for talks on shared decision-making; and Dr Johnson has indicated she has no financial relationships relevant to this article to disclose.