Article Text
Abstract
Discrimination and inequalities in healthcare can be experienced by many patients due to many characteristics ranging from the obviously visible to the more subtly noticeable, such as race and ethnicity, legal status, social class, linguistic fluency, health literacy, age, gender and weight. Discrimination can take a number of forms including overt racist statement, stereotyping or explicit and implicit attitudes and biases. This paper presents the case study of a complex transcultural clinical encounter between the mother of a young infant in a highly vulnerable social situation and a hospital healthcare team. In this clinical setting, both parties experienced difficulties, generating explicit and implicit negative attitudes that heightened into reciprocal mistrust, conflict and distress. The different factors influencing their conscious and unconscious biases will be analysed and discussed to offer understanding of the complicated nature of human interactions when faced with vulnerability in clinical practice. This case vignette also illustrates how, even in institutions with long-standing experience and many internal resources to address diversity and vulnerability, cultural competence remains a constant challenge.
- Clinical Ethics
- Cultural Pluralism
- Minorities
- Patient perspective
- Decision-making
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Introduction
Cultural diversity in clinical practice is increasingly common in healthcare settings of industrialised countries. Patient diversity entails a number of challenges for healthcare professionals, including linguistic and cultural barriers, differences in patient knowledge and experience of local healthcare facilities, and difficulties accessing healthcare. Health inequalities of racial and ethnic minorities in the USA have been well documented.1 The racial factor can be considered an independent factor to explain the worsened health outcomes and lower quality healthcare received by ethnic minorities, but discrimination also acts as a social stressor with a negative impact on physical and mental health of minorities.2 ,3 In Europe, inequalities and discrimination have been documented in healthcare services, both through direct ‘person to person’ racism and indirectly through policies based on the needs of the majority population.4 Inequalities may also occur through more subtle and often unconscious forms of discrimination, such as stereotyping or implicit bias.5 These biases are directed towards minority groups possessing some characteristic that deviates from the majority ‘norm’, such as race, religion, sexual orientation or body mass index.6
Healthcare systems may either ignore this patient diversity while expecting minorities and newcomers to adapt to majority services or they may respond to the needs of these new patient populations by offering specific services, such as interpreter services for allophone patients or by training health professionals in cultural competence issues. Cultural competence offers an engaging conceptual model to reduce health disparities.7 Betancourt defines cultural competence in healthcare as understanding the importance of social and cultural influences on patients' health beliefs and behaviours, considering their influence at multiple levels of the healthcare system and providing interventions that take these into account to deliver quality healthcare to diverse patient populations.8 To be effective in improving cultural competence, interventions must take place at multiple stages: clinical, structural and organisational and should focus on knowledge, skills and attitudes.
Cultural consultation services are one example of the specific services that healthcare institutions may offer to improve care in contexts of high patient diversity.9 Culture shapes the way patients present with disease, interpret their symptoms, seek healthcare or cope with illness or other serious life events; but it also impacts on the way healthcare providers and institutions will respond to patient needs.10 Cultural consultation services evaluate patients referred by a healthcare provider in order to offer a comprehensive assessment and identify relevant social and cultural factors influencing the clinical situation.11
Cultural consultation process
The Transcultural Consultation (TC) was initiated in 2007 in response to the important diversity of patient population (50% foreigners) in a university hospital in Switzerland. This consultation is a part of a larger institutional network, the ‘Health for All’ network, which aims to provide equal access to quality healthcare for all patients, including migrant and vulnerable patient populations.12 The TC offers support to clinicians encountering difficulties providing care in cross-cultural situations, explores the cultural and social factors influencing diagnosis, prognosis and treatment, and provides feedback, information and recommendations to help clinicians provide care to their diverse patients. The TC staff consists of a physician, a medical anthropologist and occasionally a nurse, with the contribution of a network of community interpreters and cultural brokers. The information obtained through the consultation process provides a clinical ethnography structured by the ‘cultural formulation’ outline into four topics: cultural identity, illness explanations, cultural factors related to the psychosocial environment and cultural factors influencing the clinician–patient relationship.13 ,14 The information gathered and the ensuing recommendations are transcribed in a TC report, sent to the referring clinician and included in the patient's electronic medical record.
Case vignette: Sonia and Justin
Through a clinical situation encountered at the TC, I will describe the difficulties encountered by a hospital team and by the patient's mother in the context of cultural difference and vulnerability. I will attempt to deconstruct both parties' reactions and attitudes, whether conscious or unconscious, to illustrate how implicit and explicit bias can interplay in the clinic and generate misunderstandings and mistrust. To protect the main protagonists, their names have been changed, the vignette has been modified and personal information withheld.
A TC was requested for Sonia, the young mother of Justin, 6 months old, by the team caring for her son. The reason stated for this referral was ‘difficult communication between mother and health care team, linked to cultural differences’. The team explained that Sonia was having trouble agreeing to a medical procedure needed by Justin. Justin had been born with a congenital malformation and had been operated on soon after birth. This operation had been a success, but the current procedure was needed because of a complication that commonly occurred secondary to the initial surgery. Justin and Sonia had been on the ward for many weeks now, and because of Sonia's hesitation, the intervention date was constantly postponed.
During my first encounter with the team caring for Justin, I was struck by how emotionally fraught this case had become for them. They expressed intense frustration and irritation related to the difficulties encountered in interacting with Sonia, linked to the fact that ‘she changes her mind all the time and says different things depending on which health professional is present’. They also expressed a high degree of concern about Justin's future health ‘because refusal of this procedure could worsen his prognosis’. Moreover, Sonia did not have a housing strategy for herself and Justin after hospital discharge. The team's concern was such that they were considering involving child protective services because they equated Sonia's behaviour with child neglect. Sonia's social isolation and extreme vulnerability made them particularly worried about the need to safeguard Justin's well-being. Finally, they insisted that she must ‘hurry up and make up her mind about the procedure’ because they felt under pressure by the hospital administration due to the length of Justin's hospitalisation and fears that his health insurance would refuse to cover such a prolonged stay. I inquired about their explanation for Sonia's refusal. They hypothesised that ‘the medical information is too difficult for her to understand as she has had little schooling’. They described her as mistrustful and defensive, to a degree that led a few team members to suggest a possible psychiatric disorder.
I then met with Sonia in the presence of an interpreter and the unit head nurse. Sonia was indeed very guarded at first, refusing to discuss past events, showing irritation and sometimes verbally aggressive behaviour when inquiries were made about matters she considered private. She relaxed slowly and shared some personal information. She also brought up her difficulties communicating with the team. Her interview revealed that she had been living and working without legal status for the past 8 years. She spoke her mother tongue and a few words of the local language. She remained vague on certain aspects of her history and current life, and sometimes contradicted information the team had on file. Her child's father was currently not involved and she had no life partner. She appeared quite isolated; all of her family was living in her homeland. She was unemployed, after taking legal action against her former employer who owed her several months of salary. Sonia had gone to school until 12th grade. She claimed to understand her son's health issues very well, but that ‘her heart has not yet accepted that he is not a healthy baby’. She expressed shock that they would propose such invasive procedures on a very small infant. She believed he needed to be bigger and stronger before they could perform the pending intervention.
Because of Justin's chronic need for specialised medical care, she was forced to entirely revise her plans for the future, which so far had been to return to her home country and start a small business with the money she was to receive from the lawsuit. She explained finding life as an illegal immigrant harsh beyond expectations, and that she had suffered a lot from repeated discrimination and from dire living conditions. She was living with a fellow countrywoman who did not accept the baby's presence and she had to find a new place to live (an arduous task in the absence of legal status or stable income). She believed that some members of the healthcare team were hostile towards her. Most medical encounters concerning Justin had taken place through an interpreter, except for one important medical encounter that was held in the local language despite the fact that she voiced her lack of fluency in this language and asked for an interpreter, which was not provided. She felt disrespected, interpreted many of the team's behaviours as discriminatory and expressed mistrust towards them. She also entertained the idea that maybe the complication Justin experienced was due to a medical error during the early operation. She believed that the doctors had not given her enough information about this possible complication. She was very distressed by all of these issues and had not yet been able to imagine an alternative plan for her future in Switzerland. She made constant requests to the team (including requests for several medical certificates in order to access social benefits), while rejecting the solutions they proposed because she considered them inadequate for her specific predicament.
My role as a consultant was particularly complex in this situation where conflict had escalated over several weeks and both the team and mother were distressed. Offering a distanced neutral standpoint to each party was essential. Showing Sonia empathy for her hardships was a necessary first step. Transmitting the mother's perspective to the team (with her permission) and allowing them to understand the complexity of her predicament prompted more empathic attitudes on their part. Demonstrating understanding for the team's frustration and feelings of helplessness was also necessary. Raising consciousness that this may lead to negative attitudes helped them to avoid falling into that track, but was difficult to maintain on the long term due to work shift changes and inevitably incomplete information transmission on these aspects between team members. After validating the difficulties she had experienced, I also pointed out to Sonia the team's important efforts to take into consideration both Justin's needs and hers, including giving her enough time to think about the procedure and collaborating with her social worker and lawyer.
The recommendations issued in the TC report were to consistently use interpreters for relevant clinical encounters, to include potential allies in the management (such as Justin's private paediatrician or Sonia's lawyer), to recognise Sonia's distress explicitly and give her time to build a new life project, to maintain clarity on their professional role and expertise as well as on their limits and the reasons for these, and to obtain team supervision. In the end, Sonia gave oral consent for the intervention but maintained her refusal to sign the written consent form. The surgical team considered this acceptable and proceeded with the surgery, which was successful. Postoperative care was medically uneventful. Discharge was postponed until Sonia found a place to live. This created more tension because she turned down several options that the social worker proposed and that the team considered perfectly adequate.
Discussion
I will now attempt to examine attitudes and biases arising in cases like this one and consider the different individual and contextual factors that may have exacerbated miscommunications and tensions in this case.
First I want to turn to the possible influence of Sonia's status as a migrant. In contrast to the USA, in Europe there is often more focus on nationality, religion and legal status in the host country than on race, with certain categories of migrants being unfavourably portrayed politically, in the media, and by the general public. Due to the current unfavourable economical context, Switzerland—as most Western countries—is restricting access to the country and reducing rights and privileges of immigrants through a number of new laws proposed by increasingly popular extreme right-wing parties. These parties frame migrants as abusers of the host country, agents of social unrest or even criminals.15 This economic and political context also influences health institutions' policies that tend to cut or restrict interpreters' budgets and discourage their use, in addition to other restrictions that affect migrants' health.16 These contextual factors may influence health professionals' attitudes and communication styles towards migrant patients, consciously or not. Some health providers may even find themselves in contradiction between their personal political opinions and their duties as professionals, for instance, when a patient asks for a medical certificate to justify their request for a humanitarian permit.17 In such cases, clinical assessment of the request may involve subjective factors and these can be interpreted by health providers according to their convictions and biases. The issue of language is also at stake, the explicit attitude being that foreigners should adapt to the host society and master the locally spoken language, with healthcare providers often unaware of the importance of language barriers in healthcare inequalities.18 In our case, Sonia might have perceived negative attitudes towards a number of minority characteristics such as her lack of legal status, her lack of mastery of the local language, her claims for welfare or simply because of her status as single mother.
The team had to perform many additional steps to care efficiently for Justin, such as organising the presence of an interpreter. This ‘extra bit’ that is often required to care for migrant patients might also kindle negative attitudes in health professionals, which may be amplified in contexts of economic constraints experienced in many public institutions. Requesting procedures that are unfamiliar to clinicians, such as writing a medical certificate to give grounds to a humanitarian permit or working with an interpreter, calls for specific competence that may bring clinicians out of their ‘comfort zone’. Hill, in his review article on clinicians' moral judgements of patients, shows how clinicians tend to judge and label negatively patients that do not legitimate their efficacy.19 His synthesis of functional neuroimaging research shows that stereotypes are triggered by negative emotions, heavy workload and time pressure; they are decreased by prompts to individualise stereotyped images. Stimulation of interest and curiosity may prevent clinicians from making moral judgement but this strategy will be successful only if the stimulus is within the person's capacity to understand and act upon. A predicament such as Sonia's might indeed have been perceived as quite outlandish for many members of the team and thus difficult to relate to. When narratives differ too much from what the listener knows and understands, ‘failure of imagination’ can occur.20 According to Kirmayer, disbelief serves a protective function. It helps individual avoid ‘a destabilizing otherness that would call their assumptive world into question’ and ‘keeps the privileged from having to recognize the legitimacy (and urgency) of the moral claim of large numbers of people, not only for our compassion and concern but also for a share of our resources, time and space’ (ref. 9, pp. 180–181). Grove and Zwi also describe how public and political discourse of ‘othering’ refugees and forced migrants distances, marginalises and disempowers migrants by portraying them as deviant from the host society and a threat to national security, scarce resources and public health.21 In this perspective, in order not to be assimilated with this deviant portrait, the expectation is that migrants must be content with their fate of poverty, hardworking, pursuing integration, respectful of authority and compliant with procedures. Even when professionals do not accept these discourses, such assumptions may nevertheless find their way into clinical practice. Sonia's refusal of the intervention and proposed housing solutions, her multiple and sometimes aggressive requests, and the ‘suspicious’ inaccuracies of her narratives to different healthcare providers paint a portrait far from the expected one. In such cases, deviating from the expected norm can have a negative impact on the provision of empathy, explicitly or implicitly, even despite the skills and good intentions of health professionals.
Rather than cultural aspects linked to Sonia's origin, the evaluation pointed out the relevant social aspects and how many of her behaviours and attitudes were guided by precariousness and the ‘culture of survival’. Wilkinson and Marmot22 have pointed to the importance of social determinants on health, illness and premature mortality. Sonia's situation combines many adverse social determinants, that is, unemployment and lack of income and security, social exclusion due to the lack of legal status, lack of social support as single mother without close family present, major stress with Justin's illness and dissolution of her life plan, and low position on the social ladder making this new life transition difficult. Exposure of Justin to these adverse circumstances may also impact on early development and future health. The paradox with such patients is that healthcare providers will recognise these factors of vulnerability and often involve the social worker to provide assistance to these patients. Nevertheless, the sum of vulnerabilities also seemed to act as a framework for healthcare providers to question Sonia's competence as a parent. Although Sonia's social predicament did make for a very vulnerable start in life for Justin, the healthcare team seemed to consider Sonia as having full agency, as if her choices in life were real, rather than accounting for the adversity of her life circumstances and the concrete contextual barriers that she encounters in attempting to overcome them. This was illustrated by remarks such as ‘now that she has a child, she has to become responsible’ or by the proposition of certain members to call upon child protective services. In an ethno-psychiatric perspective, Sonia is also at risk because she lacks the protective framework offered by family and community that will help her with the adjustments required by her recent parenthood and will help her give acceptable meaning to the current problem.23 This may have affected her ability to create sense of Justin's illness and to come to decisions regarding his health and their future.
Sonia's biases were also many, and she explicitly expressed her lack of confidence in the team. Whereas some recriminations seemed justified (not providing an interpreter for an important medical consultation with the specialist), Sonia also misinterpreted many common everyday institutional vexations (the nurses not answering her call immediately, the belated administration of medical treatment, changes in schedule of a diagnostic exam) as evidence that the team provided lower quality care to Justin. Her prior experiences of negative attitudes and constant discriminations in everyday life as illegal ‘visible minority’ immigrant likely influenced these perceptions. Her mode of functioning was that of fighting the attacks of a hostile environment. Indeed, her requests would often become quite vehement if they were not met rapidly, which irritated the team even further and prompted their concern that she would not handle issues regarding Justin's upbringing adequately. Whereas each party rightly perceived the other's implicit and explicit attitudes of mistrust, they misinterpreted the reasons behind them.
In this impass, the healthcare team's request for the mother to come to a rapid decision on the pending procedure and to comply with the living arrangements obtained by the social worker did not take into account the time needed for Sonia to accept the chronic nature of her son's condition, the shock that her life plans had to be revised or her fear of invasive medical procedures on her infant son, in addition to her very vulnerable social and administrative situation. The accumulation of negative experiences and contextual factors on each side prevented the team's provision of normal empathy towards the mother's predicament and fostered the mother's reluctance to trust the team. My role as transcultural consultant was complex and delicate, and the effect of the intervention was modest. The situation had evolved over several months and tensions were substantial between Sonia and the team caring for Justin. Our experience at the TC is that providing an extensive narrative of patients and their families triggers interest or curiosity in teams and allows clinicians to overcome negative first impressions. In this situation, the narrative provided by the TC could not compete with the overarching narrative constructed by the team over several months and with their position as guardians of an extremely vulnerable child's well-being. Furthermore, the description of Sonia's predicament seemed to overwhelm clinicians and bring on feelings of helplessness, thus feeding their negative moral judgement.
Conclusion
Neutrality with all patients is an impossible goal to reach. Each clinician comes with his own experiences and attitudes, is subject to emotions and opinions, all tainted by his specific cultural context, whether personal, professional or institutional. Negative attitudes, both implicit and explicit, will inevitably occur and must be accounted for. This is an ethical as much as a public health issue in order to improve access and quality of care as well as health outcomes for vulnerable populations. Sensitisation to these issues and training in cultural competence must occur early on and should ideally be included longitudinally in health professionals' training. Institutional awareness of these potential downfalls should foster actions to improve institutional cultural competence. At our hospital, besides the TC and other migrant-specific consultations, an interpreter bank is available for 50+ languages, cultural competence training is offered to qualified health professionals and mandatory for undergraduate students of most health professions, and information about institutional migrant-specific resources is provided to collaborators through informative sessions, the hospital website, flyers and brochures. Despite the availability of these resources, many situations remain where the diversity of patients' backgrounds generates misunderstandings and tensions with the team, and sometimes triggers implicit and explicit negative attitudes. It remains a challenge for healthcare institutions, regardless of the larger economic and political context, to transmit effectively and to all healthcare providers the necessary knowledge and skills needed to care for migrant and vulnerable patients and to engage health professionals to reflect on their personal attitudes towards vulnerable patients.
References
Footnotes
Contributors MDD is the sole author of the paper. Samia Hurst and Patricia Hudelson contributed to this paper by providing useful comments on earlier versions of this manuscript.
Competing interests None declared.
Provenance and peer review Not commissioned; externally peer reviewed.
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