5 Cultural Humility, Social Determinants, and Disparities in Pediatric Palliative Care

Danielle Jonas, Alexis Morvant, and Sara Munoz-Blanco

Introduction

Pediatric palliative care (PPC) is known for its holistic approach in the care of patients and families facing a serious illness. Diversity is recognized by the Institute of Medicine as a core value in healthcare.¹ Human identity is complex, nuanced, and diverse, and it may include such factors as race and ethnicity, cultural values and norms, religious or spiritual beliefs, cumulative personal or familial experiences, and social environment.¹ As is the case in the adult world, various studies across pediatrics have elucidated the ways in which social disparities in healthcare directly impact access to critical aspects of PPC such as goals of care conversations, continuity in care, symptom management, resources, end-of-life care, and bereavement support.^2,3,4,5 For example, in their study out of California, Johnston and colleagues found that pediatric patients with complex chronic conditions (CCCs) who identified as Hispanic, as well as teenage/young adult patients, were two populations that were more likely to die in the hospital as compared to other children.⁵ Further research is needed to understand if dying in the hospital was in line with these patients’ goals or if they died in the hospital because of barriers to accessing alternative resources.^3,5

Recognition of each patient’s and family’s human identity is a central part of high-quality PPC; it allows us to optimize relational building and trust and align family identity to goals of care and interventions. It is important to recognize that many human identity factors are also sources of disparities in healthcare, whereby families from minority ethnic and/or religious backgrounds and economically disadvantaged communities receive lower quality care. PPC is not exempt from these disparities in care. In addition, power imbalance and differences between providers’ and families’ values and social environment can be a source of conflict that can negatively affect the provider–family relationship. The practice of cultural humility invites us to reflect on our beliefs and biases and exercise genuine openness with and curiosity about learning about “the other.” This can be applied within the culture of medicine with the hope of addressing factors that contribute to disparities in care.

In this chapter, we provide suggestions for how to assess communication preferences of pediatric patients and families, a framework on how to be culturally humble and curious, practical tips regarding the clinical PPC role, factors that contribute to disparities in PPC access, and an exploration of the concept of cultural humility within the social context of PPC. Figure 5.1 illustrates how social disparities and cultural humility impact provider care of patients and families, incorporating the identity factors of all parties involved.

Communication in the Context of Social/Cultural Norms

In considering communication with families that is socially and culturally informed, it is crucial to remember that children exist within the context of a social system and within unique world paradigms. These paradigms may include cultural, religious, spiritual, or linguistic norms that inform the lens through which families view and accept their individual and group experience with the child’s illness. While family-centered care should universally consist of relationship building, trust, and shared decision-making, differing familial backgrounds will result in differing communication preferences and needs from providers throughout the disease trajectory. Assessing and factoring in the individual and unique needs of families is a crucial component of providing ethical and compassionate PPC.

Communication as a Pillar of Pediatric Palliative Care

Optimizing communication between providers and families in the context of social/cultural norms can also include the use of medical interpreters. Language barriers can hinder shared decision-making, rapport-building with patients and families, health quality, symptom management, utilization of services, and end-of-life outcomes.⁶ Effective medical interpretation in the hospital is a crucial aspect of culturally sensitive care for patients and families with limited English proficiency.⁶ A systematic review of the literature found that patients with limited English proficiency had poorer discussions regarding quality goals of care and end-of-life care when professional medical interpreters were not used.⁶

Furthermore, several studies suggest that pre-meetings between providers and interpreters during which topics and terminology could be discussed and explained were important in optimizing goals-of-care conversations during encounters with patients and families.⁶ Including medical interpreters along the care continuum can help to ensure that their perspective is fully informed to the nuances of the patient’s condition, as well as the patient and family’s framework, needs, and goals. Some studies have illuminated how interpreters may filter prognostic information at times, which may be due to cultural norms and/or fear of upsetting families or taking away hope.⁷ Clarification of how prognostic information as well as other sensitive topics are interpreted within the social/cultural constructs of the family can improve medical interpretation and overall patient care. At the conclusion of meetings, it may also be helpful to debrief with the medical interpreter to gain insight into their own experiences and exchange feedback. For instance, an interpreter could point out, “when you said X, it did not really translate well.” The debrief could also be an opportunity to check in on the interpreter’s well-being and offer support if it was a particularly challenging or emotional meeting. This debrief can facilitate emotional processing and acknowledgment of their own pain in being the messenger delivering difficult news.

Assessing Communication Preferences and Expectations in Pediatric Palliative Care

Patient and family communication preferences in PPC can be influenced by a variety of factors including culture of decision-making, religious or spiritual beliefs, ideas around communication about death with children and as a family, as well as global notions about suffering, pain, and the meaning of death.⁸ One study found that a majority of parents of children with cancer preferred detailed, longitudinal prognostic information and verbalized a preference for more information rather than less.⁹ Another study found that pediatric organ failure and transplant physicians do not regularly discuss end-of-life and prognostic information and that further research is needed to better understand how to optimize compassionate and honest information with patients and families within this population.¹⁰

Concise clinical assessment and rapport-building over time are crucial components for determining how each family system and each individual family member makes decisions. For example, some families may feel that it is best for the parents to receive all information before any information is shared with their child; whereas some families may prefer that providers be the ones to update the child about their condition. Adolescents and young adults (AYA) may or may not want to receive all information, even serious information, alone, and some may want to receive all information even before their parents. It is important to assess this dynamic in the AYA population.

Decision-Making Styles

Decision-making style can be influenced by culture and religious/spiritual beliefs as well as by familial norms and/or past life experiences. Styles are likely to be unique to each family or individual and can vary depending on the magnitude and type of decision. Assessing a family’s decision-making style early on in the relationship can foster trust, as the family will likely appreciate that their preferences and needs are being considered. Trust has been shown to influence decision-making style in adults, with low-level trust resulting in more autonomous decision-making preference (i.e., less shared decision-making).¹¹ Providers should carefully assess who the patient and family consider to be part of their decision-making “team.” It is generally accepted that in Western culture the family unit tends to consist of immediate family members. Decision-making, therefore, may be up to the family nucleus, usually the parents and/or primary caregiver. In other cultures, this is not always the case. For example, Familismo, a Latino cultural construct, emphasizes the commitment and loyalty to family, immediate as well as extended.¹² Thus, some Latino families may prefer to consult with multiple family members to reach consensus before making a medical decision, which, if not known beforehand, can lead to delays in care and decision-making.¹² On the other hand, for some families of Latino or Asian descent, decision-making relies on the primary caregiver, usually the mother.⁸ It is important to maintain a sense of cultural curiosity and avoid assumptions based on culture/ethnic background alone and clarify with the family who is/are key decision-maker(s). This can allow for timely planning of family meetings and goals of care setting, ensuring that all key players are present for important discussions.

Various factors may influence family engagement in medical decision-making, such as the opinions or preferences of a religious leader or past familial experiences with medical decision-making and/or end-of-life care. It may be helpful to assess if the family has had to make other difficult decisions for their child or another loved one in the past and to understand what was most supportive to them as they were faced with that decision or what was problematic in the past. It may be helpful to understand if they preferred a concrete medical recommendation or if there were other stakeholders who were involved in the process, such as extended family members or a religious leader.

In addition, some families may oppose involving the child in decision-making, which can cause significant distress among providers, especially for those patients able to participate in decision-making from a developmental standpoint. Generally speaking, pediatricians and other pediatric professionals tend to assume that children who function cognitively as a 7-year-old or higher should be given the opportunity to be included in their care and assent to medical decisions if they desire to do so. However, some families are resistant to involving their child in information-sharing, particularly when their child has a life-limiting illness. This resistance to involve the child can be due to cultural factors (children are not involved in decision-making, period) or to religious/spiritual beliefs, where speaking the truth out loud may cause the child to give up or the sickness to worsen.¹³ Assessing decision-making style can result in better quality of care, family satisfaction, and trust. When tensions are particularly high around how and when to include the patient in the decision-making process, it may be helpful to consult additional resources such as the ethics committee, patient relations, or the hospital-based legal department.

Considering and Assessing Health Literacy

In considering how to most effectively communicate with patients and families in a culturally and socially sensitive manner, providers must consider health literacy and developmental stages. Health literacy is defined as “the degree to which individuals have the capacity to obtain, process and understand basic health information and services needed to make appropriate health decisions.”¹⁴ The literature highlights that risk factors for low rates of health literacy include lower socioeconomic status (SES), limited English-language proficiency, and identification with minority racial/ethnic groups.¹⁴ One comprehensive national study found that a significant portion of parents in the United States have limited health literacy and recommended that efforts to reduce literacy demand on parents would improve overall healthcare for children.¹⁴

In practicing culturally sensitive PPC, providers must be aware of individual health literacy levels and be willing and able to tailor communication given variations in literacy level. For example, providers commonly assume that parents know the name and function of each human organ system. Anecdotally, authors of this chapter have encountered parents who do not understand the basic functions of some organ systems affected by their child’s illness. This was uncovered by explicitly asking parents if they knew what x organ did in the body; this anecdotal discovery has been a consistent experience across several diverse institutions. Therefore, when communicating the severity of a child’s illness, a careful explanation regarding how and why the child’s organ is not functioning properly may help to bridge communication and facilitate shared medical decision-making. Routinely including such explanations in discussions may help to ameliorate feelings of shame and embarrassment for parents who may be hesitant to ask questions regarding information that they are assumed to know. Child life specialists, child psychologists, and social workers can be particularly helpful in explaining serious illness to children and adolescents.

Future Clinical Development of Culturally Sensitive Communication in Pediatric Palliative Care

In recent years there has been a shift in medicine from cultural competency to cultural humility. Cultural competency is focused on learning specifics about different cultures and then applying that generalized knowledge to culturally diverse healthcare encounters. However, some argue that this lends itself to stereotyping and ignoring the diversity of individuals within cultures.¹⁵ Cultural humility, on the other hand, invites providers to reflect on individual beliefs and biases (i.e., personal culture) and exercise genuine openness with and curiosity about the “other” (i.e., our patient/family). Within the culture of medicine this is referred to as culturally humble care or cultural humility.¹⁶ There is limited information in the literature regarding how to best practice cultural and social humility and curiosity within the field of PPC. Further development of interventions and clinical practices that support patients of diverse backgrounds is needed.⁷ This is especially pertinent in this field, as prognostic communication, the balance of hope and medical information, and end-of-life care are influenced by culture and religion. The tendency toward medical Western values and ethics does not always meet the needs of diverse patient populations.⁷ If possible and as appropriate, it may also be beneficial to involve a clinician from the family’s cultural background or consult with a provider or community member who may serve as a cultural ambassador to help navigate the clinical situation.

Cultural Humility

Palliative care as a specialty aims to provide culturally humble care to all patients and their families. Recently, the term “cultural humility” has almost universally replaced “cultural competency,” though at times the terms are mistakenly used interchangeably. So, what is cultural humility, exactly? Foronda and colleagues performed a concept analysis on the term “cultural humility” and described it as a life-long process with attributes of (1) openness (being open to new ideas, including interacting with others from different cultural backgrounds), (2) self-awareness (“What do I think/believe/feel about x-y-z? What are my implicit biases?”), (3) being egoless (being humble, neutral, and viewing everyone as equals), (4) embracing supportive interactions (having positive human interactions), and (5) self-reflection and critique (“What went well in that interaction, and what can I improve on?”).¹⁶

Some providers suggest that cultural differences frequently present barriers to providing quality palliative care.¹⁷ Cultural, religious, and spiritual norms, values, and beliefs, as well as our social environment and past experiences shape human perceptions of the world, including what happens to individuals and their families. These factors influence how individuals make decisions and perceive quality care as opposed to care that does not feel helpful or therapeutic. Therefore, working with, instead of against, these differences is imperative in optimizing the care of seriously ill children. Because cultural humility discourages overgeneralization in clinical care, suggested language is highlighted in Table 5.1.

Interpretation of illness, coping, and bereavement can also be influenced by individual family factors. Families with prior loss or previous hospice experience may be more or less amenable to palliative care services depending on their history. Some families who have had previous hospice experience may have a challenging time differentiating between palliative care and hospice, worrying that palliative care may carry the same prognostic implications as hospice did previously. Parents who have lost another child because of a genetic condition may be familiar with the interdisciplinary team approach and/or the trajectory/prognosis of their child’s condition. Parents may have access to external resources, such as online support groups or relationships with other parents who have a child with the same or a similar diagnosis. Ensuring a full bio-psycho-social-spiritual assessment early in the care process can be helpful in assessing the family’s experience of services and access to support systems. Palliative care providers are trained to compassionately ask about previous loss and offer families opportunity to reflect on these past experiences and process how their grief or trauma may be influencing their current illness experience. Interdisciplinary providers should be aware of how past experiences with loss and/or trauma may impact individual and family coping with serious illness.

Another crucial role for the palliative care team is to support discussions of medical information that exist alongside spiritual beliefs and coping. Often, families cope with difficult news by balancing their processing of medical information with enhanced religious faith and belief in a Greater Being and the power of prayer. The ability to balance worries with some semblance of hope and faith is nuanced. Expressions of faith and hope in the face of a terminal medical diagnosis can often be confused with a lack of understanding regarding the provider’s assessment.¹⁸ Furthermore, providers may feel inclined to reinforce their prognostic indications in the face of hope in the form of badgering or repeating information multiple times to “ensure” the family has heard a prognosis, which some family members may perceive as unhelpful or even disrespectful.

Communicating permission for continued parental hope is crucial for parental functioning. When difficult information is being shared or processed, the optimal provider response is to sit with suffering and reflect a position of comfort and presence during moments of silence. In some cultures, the ability to be present with expressions of grief is considered to be supportive and helpful. However, in other cultures, individuals prefer to express their grief privately. Palliative care providers can explicitly ask how to be most helpful during these moments if they are unsure of family or individual preference.

When a child dies it is reported to be the “worst loss” that a human being can experience.¹⁹ Culturally sensitive care and decision-making support is imperative in optimizing parental and family bereavement outcomes.¹⁹ The literature highlights how parental demographics can affect the grief experience and overall bereavement outcomes.

Given the high risk for poor grief outcomes and prevalence of posttraumatic stress disorder, bereavement support is particularly important.¹⁹ The majority of children die in hospitals, and, unfortunately, very few hospitals offer quality bereavement programs that are institutionally funded, meaning that families must turn to their own communities, resulting in the secondary loss of a connection with familiar hospital-based teams and longitudinal relationships.¹⁹ Future prospective studies looking at this particular patient population could be helpful in fully grasping the nuances of this complexity.

In a similar manner, culture and religious/spiritual practices can also have a meaningful influence on how families process grief and bereavement. For some families, performing certain spiritual or religious rituals prior to the death of the child may be important. Burial within 24-48 hours of death is preferred, and cremation is usually forbidden in Islamic and Jewish traditions, for example. Catholic families may want their loved one to receive the sacrament of the sick and Holy Communion by a Catholic priest. In addition, autopsies, which are often valued by providers, may not be acceptable for some families due to cultural or religious beliefs, as in Hinduism or Jehovah’s Witnesses religions. The information we may obtain from an autopsy, which can support healing or even genetic information that could influence future children of an affected family, must be balanced with respect for that family’s cultural or religious/spiritual beliefs.

Organ donation can help some families find purpose and meaning in their loved one’s death, which can aid the bereavement process. However, anecdotal experience highlights how discussion about organ donation may result in an added layer of distrust of the medical system, as some minority groups worry that their care may be compromised for the sake of saving the lives of more advantaged groups. In general, facilitation of religious and spiritual rituals that are important to the family can be enhanced by providers remaining culturally curious, asking questions about familial needs as end of life approaches, and making accommodations on visitation policies, presence of particular religious/spiritual leaders, or expedited burial arrangements when needed.

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Quality in Pediatric Palliative Care Program Development Fatigue Practical Aspects of Palliative Care Communication Advanced Heart Disease Children’s Voices: The Experience of Patients and Their Siblings

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