◆ Quality palliative care requires attention to patient and family cultural values, practices, and beliefs.
◆ A multidimensional assessment of an individual and family’s culture is essential to providing palliative care.
◆ An individual’s culture encompasses multiple components, including race, ethnicity, gender, age, differing abilities, sexual orientation, religion and spirituality, and socioeconomic status.
This chapter defines culture and the complexity of its components as they relate to palliative care. It emphasizes how recognizing one’s own values, practices, and beliefs impacts care. Finally, it discusses selected palliative care concepts and issues influenced by culture. This chapter is intended to be not a “cookbook” approach to describing behaviors and practices of different cultures as they relate to palliative care but rather a guide to raising awareness of the significance of cultural considerations in palliative care.
Culture and palliative care nursing
The essence of palliative nursing is to provide holistic supportive care for the patient and the family living with a serious or life-limiting illness. Palliative nursing strives to meet the physical, emotional, social, and spiritual needs of the patient and family across the disease trajectory.2 To meet these needs, nurses must recognize the vital role that culture has on one’s experience of living and dying. The beliefs, norms, and practices of an individual’s cultural heritage guide one’s behavioral responses, decision-making, and actions.3 Culture shapes how an individual makes meaning out of illness, suffering, and death.3,4 Nurses, along with other members of the interdisciplinary team, partner with the patient and family to ensure that patient and family values, beliefs, and practices guide the plan of care.5
The National Consensus Project (NCP) Clinical Practice Guidelines for Quality Palliative Care5 define the core concepts and structures for quality palliative care delivery. The guidelines comprise eight domains with corresponding criteria that reflect the depth and breadth of the specialty. Cultural aspects of care constitute one of the eight domains, emphasizing the central role that culture plays in providing strength and meaning for patients and families facing serious illness.5 Within this domain, two overarching guidelines define culture and outline cultural competences for interdisciplinary team members (Box 36.1).
Source: Adapted from National Consensus Project for Quality Palliative Care. Clinical Practice Guidelines for Quality Palliative Care 2013. www.nationalconsensusproject.org.
Clinical implications of the NCP guidelines
Culture is a source of resilience for patients and families and plays an important role in the provision of palliative care. It is the responsibility of all members of the palliative care program to strive for cultural and linguistic competence to ensure that appropriate and relevant services are provided to patients and families. The following case illustrates the distress experienced by the patient, family, and healthcare team when cultural implications of care are not considered.
Mrs. S is a 79-year-old female admitted to the hospital with decompensated congestive heart failure. She and her husband moved to the United States from China in the early 1970s and raised a daughter and son in the United States. Her 85-year-old husband is in good health. On morning rounds, the medical team spoke to the patient about her diagnosis, prognosis, likely disease course, and advance care planning concerns without any other family present. The palliative care service was consulted in the afternoon to assist the primary team after the nurse found Mrs. S’s husband helping her to dress and stating he was taking her to another hospital which would respect their ways.
Questions to consider in this case
1. What cultural issues are likely the basis for the conflict between the husband and medical team in this case?
2. What cultural, religious, and/or spiritual issues might impact decision-making?
3. Whom might the palliative team involve to assist in ascertaining religious or cultural aspects of care?
4. What are some techniques that the nurse and other health providers might use to both respect the patient’s right to be involved in their care and ascertain what she wants to know as well as who makes decisions for this patient?
As the United States becomes increasingly diverse, the range of treasured beliefs, shared teachings, norms, customs, and languages challenges the nurse to understand and respond to a wide variety of perspectives. The total US population in 2013 was estimated to be 317.3 million and was projected to cross the 400 billion mark by 2051.6 (Population statistics from the US Census Bureau illustrate that cultural diversity is increasing among the five most common panethnic groups, which are federally defined as American Indian/Alaska Native, Asian/Pacific Islander, Black or African American, Hispanic, and White (Table 36.1).7
Table 36.1 Ethnic groups, Census 2013
Black or African American
American Indian/Alaska Native
Hawaiian and Other Pacific Islanders
Source: https://www.census.gov/newsroom/releases/archives/population/cb14-118.html (accessed July6, 2014).
Asians and Hispanics are the nation’s fastest-growing race or ethnic groups. From 2012 to 2013 the fastest-growing racial group was Asian, with more than 60% of the growth stemming from international migration. By comparison, Hispanics represent the second-fastest-growing group, with the population increase mostly owing to births. Hispanics remain the second largest racial/ethnic group in the United States behind non-Hispanic Whites. Rates of growth in 2013 for other groups were as follows: Native Hawaiians and Other Pacific Islanders (climbing 2.3% to about 1.4 million), American Indians and Alaska Natives (rising 1.5% to a little over 6.4 million), and Blacks or African Americans (increasing 1.2% to 45 million) followed Asians and Hispanics in percentage growth rates.8
Census projections suggest that by 2060 the combined minority groups, which currently make up 37% of the US population, will constitute the majority (57%).7 Diversity among age groups is also changing as the population ages. By 2060 the number of citizens aged 65 years and older will more than double and the number of the “oldest old,” the 85-and-older age group, is expected to more than triple. It is likely that intergroup diversity will also increase, adding to the complexity of culturally competent care and the potential for cultural clashes.
With the changes in cultural diversity in the US population come increasing diversity in the nursing workforce. Nurses must be aware of how their own cultural beliefs and norms shape their professional practice and differ from the beliefs and norms of the patients and families for whom they care.
Culture is the “learned, shared and transmitted values, beliefs, norms and life ways of a particular group that guide their thinking, decision, actions in patterned ways—a patterned behavioral response.”9 Culture is shaped over time in a dynamic system in which the beliefs, values, and lifestyle patterns pass from one generation to another.4 This dynamic organizing system of life is adaptive, designed to ensure survival and well-being and to find a common purpose or meaning throughout life.4
Although culture is often mistakenly thought of as simply race and ethnicity, the definition of culture is multidimensional, encompassing such components as gender, age, differing abilities, sexual orientation, religion, and socioeconomic factors (financial status, residency, employment, and educational level).3 Each cultural component plays a role in shaping individual responses to life and in particular to serious illness and death.3,4
A broad definition of culture recognizes the various subcultures within the dominant culture an individual may associate with that shape experiences and responses in any given situation. The nurse must be constantly aware that the culture of the healthcare system and the culture of the nursing profession, as well as personal beliefs, shape how he or she responds to interactions with patients, families, and colleagues.
Components of culture
The commonly held misconception that “race” refers to biological and genetic differences and “ethnicity” refers to cultural variation is outmoded. Race exists not as a natural category but as a social construct.10 Any discussion of race must include the harsh reality of racism issues and disparities that have plagued society and continue to exist even today. Recent studies have demonstrated the discrimination of persons of certain races regarding healthcare practices, treatment options, and hospice utilization.11,12,13,14 When viewed in relation to specific races, morbidity and mortality statistics point to serious gaps in access to quality care. Racial disparities are still evident even after adjustments for socioeconomic status and other access-related factors are taken into account.15
There is often an underlying mistrust of the healthcare system. Memories of the Tuskegee syphilis study and segregated hospitals remain with older African Americans.16 The combination of mistrust and numerous other complex variables influence palliative care issues such as medical decision-making and advance care planning.4,17,Compounding the situation is the fact that healthcare providers often do not recognize existing biases within systems or themselves.15,18 These unknown biases may add to the perceived discrimination experienced.15,18,19
Researchers have tried to identify causal mechanisms for healthcare disparities in psychosocial, cultural, and spiritual palliative care; however, the work is sparse and limited by methodological flaws. Evans and Ebere13recommend using a conceptual framework such as that used in the National Healthcare Disparities Report to explore causal mechanisms, which include access to care, receipt of care, quality of care, and examination of barriers, usage, and costs of care and effectiveness, safety, timeliness, and patient centeredness.
Ethnicity refers to “a group of people that share a common and distinctive racial, national, religious, linguistic, or cultural heritage.”19 The values, practices, and beliefs shared by members of the same ethnic group may influence behavior or response. Ethnicity has been identified as a significant predictor of end-of-life preferences and decision-making.20 Currently, there are more than 100 ethnic groups and more than 500 American Indian Nations in the United States.19
Ethnicity has been shown to influence utilization of hospice and palliative care service. Ethnic minority groups are less likely to use hospice services when compared with non-Hispanic Whites. Furthermore, there has been little increase in hospice utilization in Black, Hispanic, or Asian populations in recent years. 17,21 Researchers have demonstrated an understanding of disparities in quality end-of-life care among ethnicities but have not yet identified why this is happening.13Further study into the multiple factors influencing utilization of these services is needed.22
It is important to note that although an individual may belong to a particular ethnic group, he or she may not identify strongly with that group.3,9Members of the same family from the same ethnic group may have very different ideas about what is acceptable practice concerning important palliative care concepts such as communication with healthcare professionals, medical decision-making, and end-of-life rituals. In multigenerational families, some members may hold to traditional beliefs and practices of their ethnic community of origin. Other family members may have a bicultural orientation, moving between the family culture of origin to the host society, and others may have left their cultural roots and identify with the host society.24
For example, in the United States, second- and third-generation members of immigrant families may be more assimilated into Western culture than first-generation members. This can lead to cultural conflicts around sensitive palliative care concepts.
The tendency to assume that an individual will respond in a certain way because he is a member of an ethnic group contributes to stereotyping. This can lead to inappropriate interventions and unnecessary distress. The nurse should assess each individual’s beliefs and practices rather than assuming that he or she holds the beliefs of a particular group. Note that many studies have demonstrated that regardless of race or ethnicity, all persons share common needs at the end of life: being comfortable, being cared for, sustaining or healing relationships, having hope, and honoring spiritual beliefs. 23,24,25,26
Cultural norms dictate specific roles for men and women. The significance of gender is evident in areas such as decision-making, caregiving, and pain and symptom management. It is important to have an awareness of family dominance patterns and determine which family member or members hold that dominant role. In some families, decision-making may be the responsibility of the male head of the family or eldest son; in others, the eldest female may hold that responsibility. For example, those of Asian ethnicity who follow strict Confucian teaching believe that men have absolute authority and are responsible for family decision-making.27 Discussing prognosis and treatment with a female family member is likely to increase family burden and distress and may result in significant clashes with the healthcare team.3,23
In addition to decision-making, cultural expectations exist regarding the responsibilities of caregiving. In many families, women have traditionally been expected to take on the role of caregiver when someone in the family is facing a serious illness. This responsibility, in addition to responsibilities at work and for children has been overwhelming for many, affecting their physical and emotional well-being. Research has demonstrated that female caregivers tend to experience greater caregiver burden, anxiety, and depression than male caregivers.28,29 Support for family caregivers is an essential component of palliative care.
Age has its own identity and culture.3 Age cohorts are characterized by consumer behaviors, leisure activities, religious activities, education, and labor force participation.24 Each group has its own beliefs, attitudes, and practices, which are influenced by their developmental stage and by the society in which they live. The impact of a life-limiting illness on persons of differing age groups is often influenced by the loss of developmental tasks associated with that age group.24,30 As the US population ages, the importance of addressing the unique needs of elders becomes more evident. Consider also the cultural impact of this aging population on caregiving issues, medical decision-making, healthcare resources, and end-of-life choices.
Myths about the impact of age on pain management continue to exist, with some professionals believing that children and older adults do not perceive pain as strongly as the middle-aged population.31,32 These beliefs result in undertreatment of pain and unnecessary suffering of patients in these vulnerable age groups.26
Individuals with physical disabilities or mental illness are at risk of receiving poorer quality healthcare. Those with differing abilities constitute a cultural group in themselves and often feel stigmatized. This discrimination is evident in cultures where the healthy are more valued than the physically, emotionally, or intellectually challenged.3 If patients are unable to communicate their needs, then pain and symptom management and end-of life wishes are not likely to be addressed. Additionally, this vulnerable population’s losses may not be recognized or acknowledged, putting individuals at risk for complicated grief. Challenges to providing palliative care and hospice services to those with intellectual disabilities have been identified and include limited knowledge about palliative care among providers in residential facilities as well as a need for increasing the palliative care providers’ knowledge about caring for patients with intellectual disabilities.33 Taking time to determine an individual’s goals of care—regardless of differing abilities—and identifying resources and support to improve quality of life is essential.
Sexual orientation may carry a stigma when the patient is gay, lesbian, or transgendered. In palliative care, these patients have unique needs because of the legal and ethical issues of domestic partnerships, multiple losses that may have been experienced as a result of one’s sexual orientation, and unresolved family issues. Domestic partnerships, which are sanctioned by many cities and states in the United States, grant some of the rights of traditional married couples to unmarried homosexual couples who share the traditional bond of the family.3However, many cities and states do not legally recognize the relationship. A Durable Power of Attorney for Health Care form must be completed. Without such documentation, decision-making follows state guidelines. If legal documents have not been drafted prior to death of a partner, then survivorship issues, financial concerns, and failure to acknowledge bereavement needs may cause additional distress and complicate grief.34,35
Unresolved family issues can make end-of-life complicated. The patient who is gay, lesbian, or transgendered may have been estranged from his/her family of origin. Reconciliation with family, old friends, or children may be desired as the patient prepares for coming to the end of life, or it may be challenging and distressing when family dynamics prohibit this opportunity for healing.34
Religion and spirituality
Religion is the belief and practice of a faith tradition, a means of expressing spirituality. Spirituality, a much broader concept, is the life force that transcends our physical being and gives meaning and purpose.30 Although religion and spirituality are complementary concepts, these terms are often mistakenly used interchangeably. It should be noted that an individual may be very spiritual but not practice a formal religion. In addition, those who identify themselves as belonging to a religion may not necessarily adhere to all the practices of that religion. As with ethnicity, it is important to determine how strongly the individual aligns with his or her identified faith and the significance of its practice rituals.
Religious beliefs can significantly influence a person’s decisions regarding treatment and care. These beliefs can be at the cornerstone of decisions regarding continuation or discontinuation of life-prolonging therapies for some people.11,27 Additionally, religious beliefs can strongly influence how patients and families understand illness and suffering.4,11
Chaplains, clergy from a patient’s or family member’s religious group—ideally their own community clergy—are key members of the interdisciplinary palliative care team. Those who turn to their faith-based communities for support may find the emotional, spiritual, and other tangible support they need when dealing with a life-limiting illness.13,25 Keep in mind, however, that some individuals who are struggling with misconceptions of the tenets of their own faith may experience spiritual distress and need spiritual intervention from caring chaplains or spiritual care counselors. Also be aware that many community clergy are not trained in end-of-life care and may need assistance from the palliative care team in order to support the patient’s spiritual journey.
Spirituality is in the essence of every human being. It is what gives each person a sense of being, meaning, purpose, and direction.36,37 It transcends the self to connect with others and with a higher power, independent of organized religion.13,30,36 One’s sense of spirituality is often the force that helps transcend loss and suffering.25,26,30 Spiritual distress can cause pain and suffering if not identified and addressed. Assessing spiritual well-being and attending to spiritual needs, which may be very diverse, is essential to quality of life for patients and families confronting end of life.
One’s socioeconomic status, place of residence, workplace, and level of education are important components of one’s cultural identity and play a role in palliative care. For example, those who are socioeconomically disadvantaged face unique challenges when seeking healthcare and when receiving treatment. Financial costs, including pain medications, medical tests, treatments and drugs not covered by limited insurance plans, transportation, and childcare, add additional burden.
It is important to note however that regardless of financial status, an estimated 25% of families are financially devastated by a serious terminal illness.3 Patients experiencing disease progression, or in whom treatment side effects preclude the ability to work, are forced to confront profound losses: loss of work and income, loss of identity, and loss of a network of colleagues.
Those who are educationally disadvantaged struggle to navigate the healthcare system and to find information and support. The educationally disadvantaged may lack knowledge about resources such as palliative care services and may not have the skills or access to the global Internet and social networking. Access to services is challenging for some depending on their geographic location. For those living in rural areas, access to palliative care services is inadequate when compared to urban areas.38 Only 57% of public hospitals, which serve those without health care insurance or those in rural areas, provide palliative care services.39 Hospice services are also lacking, with 62%-92% of rural counties in selected states reporting no access to community-based hospice services.40 Patients and families in a supportive community have increased access to resources at end-of-life compared to other more vulnerable populations.3A very vulnerable population with limited community resources are the unauthorized immigrants. It is presumed that there are about 11.5 million unauthorized immigrants in the United States, (2012), most of whom are educationally and socioeconomically disadvantaged and living in the country without access to healthcare.41 Most of unauthorized immigrant care is emergent only; little is known about access to palliative care within this population.
Conducting a cultural assessment
There are many tools available to help with cultural assessment. These tools include the components of culture discussed in this chapter. However, doing a cultural assessment involves questions that necessitate the development of a trusting relationship. When meeting the patient and family early in the disease trajectory, the palliative care nurse has the advantage of time to establish such a relationship. This luxury of time is not always available. Using the skill of presence and active listening is often more beneficial than using a standardized tool. Checklists do not necessarily build trust and can be burdensome. Simple inquiries into patient and family practices and beliefs can assist the nurse in understanding needs and goals. Asking the patient and/or the family member to tell you about him/herself or the family and then listening to those narratives is powerful. The patient and family often give clues that trigger important questions to ask to clarify patient and family needs and goals. Box 36.2 provides examples of trigger questions.
Selected palliative care issues influenced by culture
Culture impacts all aspects of palliative care. This section focuses on cultural considerations regarding selected palliative care issues and concepts.
Communication is the foundation for all encounters between clinicians, patients, and family members.42 When the clinicians and the patient-family unit are from different ethnic or cultural backgrounds, relating news regarding serious illness or a poor prognosis can be challenging. Communication disparities may lead to poorer outcomes and reduced patient and family satisfaction.4,43 Increasing diversity in the US population challenges clinicians to gain competency in cultural aspects of communication. Each individual brings his or her own cultural experiences and assumptions about the world, health, and illness to each new encounter. It is important to assess and respect differing viewpoints.10,24 The establishment of a relationship with the clinician, where the clinician seeks to understand individual concerns of the patient and family provides a foundation for all future communication and decision-making.23
Communication is an interactive, multidimensional process, often dictated by cultural norms, and provides the mechanism for human interaction and connection. Given the complexities of communicating diagnosis, prognosis, and progression of a life-limiting disease, there is no “one size fits all” approach.44 Cultural assessments, including cultural norms related to communication, should occur early in the initial assessment, and findings should be clearly documented and shared with all health providers involved in the care of the patient and family (Box 36.3).
Source: Adapted from C. Long. Ten best practices to enhance culturally competent communication in palliative care.24
General communication principles should be utilized at all times. These include (1) adequate preparation for communicating medical facts; (2) selecting a setting that is private and free from distractions; (3) using appropriate nonverbal communication styles, sitting down, maintaining eye contact, and conveying that the clinician is not rushed; and (4) expressing empathy and responding to patient and family emotional responses.45
One of the most important cultural communication assessments involves determining how information is shared within the family unit. Determine who the decision-maker is, whether it is the patient or a specific family member or members, and with whom information should be shared. For example, relating a diagnosis or poor prognosis to the patient may go against some cultural norms. Ideally, preferences for communication, including full disclosure of a terminal diagnosis and poor prognosis, are best discussed early in the clinician-patient relationship when the patient is relatively healthy. When this is not possible, clinicians should take time to reflect on their own bias, listen to patient and family concerns, determine individual and group norms, and engage in an ongoing dialogue about such preferences. Such measures will strengthen the relationship and show respect for the unique ways in which a family group functions.45,46
Determine the dominant language and dialect spoken and the literacy level of both the patient and the family. If there is a language barrier, a professionally trained interpreter of the appropriate gender should be contacted. If such services are not available, health providers, ideally trained in palliative care, may serve as interpreters. Family members should only act as interpreters in emergency situations and only if they agree to do so, as family members placed in this role may feel uncomfortable should sensitive issues or questions arise.3,5 Always determine what is culturally appropriate to disclose prior to discussion regardless of who is involved in the communication of medical information.4 When using an interpreter, direct all verbal communication to the patient/family rather than the interpreter. Ongoing clarification that information is understood is critical.
Active listening is one of the most important communication techniques to master for the palliative care nurse. Elicit patient and family concerns, customs, norms, beliefs, and values, and take time to reflect back what is heard. Encourage patients and families to also reflect back what they have heard. Listening to words alone is not enough. Pay attention to nonverbal cues (e.g., gestures, posture, use or avoidance of eye contact). Nonverbal communication will give valuable information and insight into the emotional impact of what is being said, and will help inform the clinician regarding how to behave as well. The reader is referred to chapter 5 for a further discussion on communication in palliative care.
Over the past 45 years in the United States, ethical and legal considerations of decision-making have focused on patient autonomy.11,20 This focus replaced the more paternalistic approach, decision-making as solely the physician’s responsibility, with an approach that emphasizes a model of shared responsibility with the patient’s active involvement.17 The Patient Self-Determination Act of 1991 sought to further clarify and to protect an individual’s healthcare preferences with advance directives.47 The principle of respect for patient autonomy points to a patient’s right to participate in decisions about the care he/she receives. Associated with this is the right to be informed of diagnosis, prognosis, and the risks and benefits of treatment to make informed decisions. Inherent in the movement for patient autonomy is the underlying assumption that all patients want control over their healthcare decisions. Yet, in fact, for some individuals, patient autonomy may violate the very principles of dignity and integrity it proposes to uphold and may result in significant distress.4,11
This European American model of patient autonomy has its origin in the dominant culture, a predominantly white, middle-class perspective that does not consider diverse cultural perspectives.4 In fact, in some cultures, patient autonomy may not be viewed as empowering but rather as isolating and burdensome for patients who are too sick to have to make difficult decisions.4,11
Emphasis on autonomy as the guiding principle assumes that the individual, rather than the family or other social group, is the appropriate decision-maker.4,17 However, in many non-European-American cultures, the concept of interdependence among family and community members is valued more than individual autonomy.4,11,20 Cultures that practice family-centered decision-making, such as the Korean American and Mexican American cultures, may prefer that the family, or perhaps a particular family member rather than the patient, receive and process information.11,13,48 For example, the traditional Chinese concept of “filial piety” requires that children, especially the eldest son, are obligated to respect, care for, and protect their parents.49 Based on the values and beliefs of this culture, the son is obligated to protect the parent from the worry of a terminal prognosis.
Although full disclosure may not be appropriate, it is never appropriate to lie to the patient. If the patient does not wish to receive information and/or telling the patient violates the patient’s and family’s cultural norms, the healthcare provider may not be respecting the patient’s right to autonomously decide not to receive the information. Some cultures believe that telling the patient he has a terminal illness strips away any and all hope and causes needless suffering and may indeed hasten death.11,24 For example, imposing negative information, such as prognosis of a life-limiting illness, on the person who is ill is a dangerous violation of traditional Navajo values.11
The nurse must consider the harm that may occur when the health system or providers violate cultural beliefs and practices. Assessing and clarifying the patient and family’s perspectives, values, and practices may prevent a cultural conflict.3,46 The nurse is in a key position to advocate these critical patient and family issues (see Box 36.2 for examples of questions to ask). By asking how decisions are made and whether the patient wishes to be involved in both being told information or participating in the decision-making process, clinicians respect patient autonomy and honor individual beliefs and values.46
Discontinuation of life-prolonging therapies
Another issue with the potential for cultural conflict surrounds decision-making regarding the discontinuation or withholding of life-sustaining treatments. Inherent in the decision is that the patient will most likely die. Attitude surveys evaluating initiating and terminating life-prolonging therapies have demonstrated differences among several ethnic groups. Research suggests that groups including African Americans, Chinese Americans, Filipino Americans, Iranian Americans, Korean Americans, and Mexican Americans were more likely to start and to continue such therapies than were European Americans when such measures were felt by the healthcare team to be futile.11,20,48,49
When making difficult decisions, family members often feel that by agreeing to withdrawal of life-prolonging therapies, they are in fact responsible for the death of their loved one. For families who believe that it is the duty of children to honor, respect, and care for their elders, they may feel obligated to continue futile life-sustaining interventions. Allowing a parent to die may violate the principles of “filial piety” and bring shame and disgrace on the family.49
Religious beliefs may also play a role in the complexity of withholding or withdrawing medical interventions. For example, in the Christian Philippines, removing the ventilator is synonymous with euthanasia.20 For those practicing Orthodox Judaism, the values that all life is precious and only God can decide our time to die, agreeing to withdrawal of life-prolonging therapies may be in violation of their beliefs.50 In both examples, involving a priest or rabbi may help the families and the healthcare team integrate religious tenets into the culturally appropriate plan of care.
A shared decision-making conversation emphasizing goals of care rather than focusing on “medical futility” may help the family struggling with discontinuing life-prolonging therapies.20,42 Recognize also that the words used by the healthcare team in these decisions, including “do not resuscitate” and “withdrawal of life support” all have negative connotations and involve the removing of something or the withholding of a particular intervention. Words and phrases that may seem clear to the health professional often literally get lost in translation regardless of whether the parties are speaking the same language. “Withdrawal of life support” may easily be confused with stopping all care, which is not the intention. Feelings of abandoning or “giving up on the patient” can be the result of this misinterpretation, resulting in family suffering, isolation and distress.24 The nurse is encouraged to be acutely aware of how information and/or questions are phrased. A suggestion is to use words that convey benefit versus burden of all therapies, always beginning the conversation with what the team will do to care for the patient rather than what burdensome interventions should be stopped.
Because many ethical conflicts arise from differences in patients’, families’, and providers’ values, beliefs, and practices, it is critical that individual members of the healthcare team be aware of their own cultural beliefs, understand their own reactions to the issue, and be knowledgeable about the patients’ and families’ beliefs to address the conflict.3,46
Meaning of food and nutrition
Across cultures, there is agreement that food is essential for life to maintain body function and to produce energy.27 Food serves another purpose in the building and maintaining of human relationships. It is used in rituals, celebrations, and rites of passage to establish and maintain social and cultural relationships with families, friends, and others. Culturally appropriate foods may be used to improve health by groups who have strong beliefs about particular foods and their relationship to health.27 Because of food’s importance for life and life events, a loss of desire for food and subsequent weight loss and wasting can cause suffering for both the patient and family.
Families need clear guidance and explanations when a patient is no longer able to enjoy favorite foods or family mealtime rituals because of declining physical ability. Families often struggle when the patient is no longer taking in any nourishment or fluids, fearing that the patient will “starve to death” or suffer from dehydration. It is imperative that the healthcare team understand the meaning attached to food and nutrition when decisions regarding the potential burden of providing artificial nutrition and hydration for an imminently dying patient are discussed. Exploring alternative ways in which the family can care for the patient through physical, spiritual, or emotional means of support will allow families to interact with the patient in ways that are meaningful to them and reflect individual beliefs, values, and preferences. The Hospice and Palliative Nurses Association Position Statement on Artificial Nutrition and Hydration in Advanced Illness can assist the nurse in understanding the benefits and burdens associated with this medical intervention.51
Pain and symptom management
Pain is a highly personal and subjective experience. Pain is whatever the person says it is and exists whenever the person says it does.52 Culture plays a role in the experience of pain, the meaning of pain, and the response to pain. The biospychosocial model of pain suggests that pain perception and response is influenced by biological, psychological, social and cultural factors.18 The meaning of pain varies among cultural groups. For some, pain is a positive response that demonstrates the body’s ability to fight against disease or the dying process. For others, pain signifies punishment and its value lies in the patient’s ability to withstand the suffering and work toward resolution and peace.18,53
Strong beliefs about expressing pain and expected pain behaviors exist in every culture.53 Pain tolerance varies from person to person and is influenced by factors such as past experiences with pain, coping skills, motivation to endure pain, and energy level. Western society appears to value individuals that exhibit a high pain threshold. As a result, those with a lower threshold, who report pain often, may be labeled as “difficult patients.”
Pain assessment should be culturally appropriate, using terms that describe pain intensity across most cultural groups. “Pain,” “hurt,” and “ache” are words commonly used across cultures. These words may reflect the severity of the pain, with “pain” being the most severe, “hurt” being moderate pain, and “ache” being the least severe.3 The healthcare team should focus on the words the patient uses to describe pain. To help facilitate an understanding of the severity of the pain experienced by someone who does not speak English, the providers should use pain-rating scales that have been translated into numerous languages.52 Although it is important to base the assessment on the patient’s self-report of pain intensity, it may be necessary to rely on nonverbal pain indicators such as facial expression, body movement, and vocalization to assess pain in the nonverbal, cognitively impaired patient, the older adult, or the infant, who are all at risk for inaccurate assessment and undertreatment of pain.3,52 A consistent approach to assessing pain and pain relief in a particular patient should be used by all those caring for the patient and documented in that manner.
Racial, ethnic, age, and gender biases in pain management have been identified and documented.31,53 Studies of gender variations in pain response have identified differences in sensitivity and tolerance to pain as well as willingness to report pain.53 Compared with men, women are more likely to report pain and have a lower pain threshold and tolerance in experimental settings.53 Underidentification and undertreatment of pain is a well-recognized phenomenon in elder care.54 Studies reveal that Hispanics, African Americans, and females are less likely to be prescribed opioids for pain or may be unable to fill opioid prescriptions depending on community access to pharmacies.18
Like pain, symptoms described by patients receiving palliative care may have meanings associated with them that reflect cultural values, beliefs, and practices. Assessment and management of symptoms such as fatigue, dyspnea, depression, nausea and vomiting, and anorexia/cachexia should be addressed within a cultural framework. For example, some cultural groups may be hesitant to disclose depression because it is considered a sign of weakness; instead, it may be referred to as a “tired state.” Using culturally appropriate language, the nurse will need to evaluate whether the symptom experienced is fatigue or depression.
Incorporating culturally appropriate nondrug therapies may improve the ability to alleviate pain and symptoms. Herbal remedies, acupuncture, and folk medicines should be incorporated into the plan of care if desired. Keep in mind that certain nondrug approaches, such as hypnosis and massage, may be inappropriate in some cultures.46
Death rituals and mourning practices
The loss of a loved one brings sadness and upheaval in the family structure across all cultures. Each culture responds to these losses through specific rituals that assist the dying and the bereaved through the final transition from life.30,46 It is important to note that rituals may begin before death and may last for months or even years after death. Respecting these rituals and customs will have tremendous impact on the healing process for family members following the death and leave a positive lasting memory of the loved one’s end-of-life experience. The nurse should make sure that any required spiritual, religious, or cultural practices are known so that there is appropriate care of the body after death.
For example, dying at home is especially important for Hmong American elders who follow traditional beliefs.55 The nurse in an acute care setting can be the advocate to ensure this tradition is honored. The family may consult a shaman to perform a ceremony to negotiate with the “God of the sky” to extend life. Additional ceremonies follow. Request for an autopsy or organ donation at the time of death is inappropriate because of the belief that altering the body will delay reincarnation. After the death, there is often much wailing and caressing of the body. The family prepares for an elaborate funeral with rituals to ensure that the loved one will “cross over” and continues with ceremonies for days following the funeral to make sure the soul joins its ancestors.55
The tasks of grieving are universal: to accept the reality of the loss, to experience pain of grief, to begin the adjustment to new social and family roles, and to withdraw emotional energy from the dead individual and turn it over to those who are alive.56 The expressions of grief, however, may vary significantly among cultures. What is acceptable in one culture may seem unacceptable, or even maladaptive, in another. Recognizing normal grief behavior (vs. complicated grief) within a cultural context therefore demands knowledge about culturally acceptable expressions of grief.3,56
Consider the following case study scenario and questions from a cultural perspective having read about the components of culture and some of the culturally important topics in palliative care.
Mr. M. is a 62-year-old Vietnam War veteran who came to the Veteran’s Affairs Medical Center for an evaluation of a cough, fatigue, weight loss and pain in his right hip. He had not sought medical care for these symptoms, which had been going on for over three months. The out patient oncology team was consulted for a new diagnosis of stage IV non-small-cell lung cancer at the same time the palliative care service was called to assist with his care. Despite increasing pain in his hip and later in his chest wall, he refused any pain medication other than ibuprofen. He repeatedly stated, “I am a tough Marine, I can take it, this is nothing compared to what some of my buddies went through in Nam.” He confided in the chaplain that, “I deserve this, after all the people I hurt and killed in the war—this is payback.” His anxiety and depressive symptoms worsened as the disease progressed. His wife and adult daughters were extremely distressed witnessing his suffering.
Questions to consider in this case
1. What cultural issues may be contributing to the challenges of pain and symptom management for Mr. M.?
2. What spiritual issues need to be addressed for a peaceful death?
3. What are some techniques that the nurse and other health care providers might use to help the family as well as the staff with moral distress surrounding poor pain control?
Striving for cultural competence
Palliative care nurses value the importance of being culturally sensitive and striving for cultural competence. This sensitivity and competence is critical when working with patients with a life-limiting illness and their families.
Cultural competence refers to a dynamic, fluid, continuous process of awareness, knowledge, skill, interaction, and sensitivity.57 The term remains controversial, as some question whether one can ever become “culturally competent.”3 However, cultural competence is an ongoing process, not an endpoint or something to be mastered.23 It is more comprehensive than cultural sensitivity, implying not only the ability to recognize and respect cultural differences but also to intervene appropriately and effectively. According to Campinha-Bacote’s model for enhancing cultural competence, there are five components essential in pursuing cultural competence: cultural awareness, cultural knowledge, cultural skill, cultural encounter, and cultural desire.57
Integrating cultural considerations into palliative care requires, first and foremost, awareness of how one’s own values, practices, and beliefs influence care. Cultural awareness begins with an examination of one’s own heritage, family’s practices, experiences, and religious or spiritual beliefs.57 Because culture is a dynamic concept, it is important to reassess one’s own beliefs on a regular basis, reflecting on beliefs that may have changed with increasing knowledge and cultural encounters.
Each nurse brings his or her own cultural and philosophical views, education, religion, spirituality, and life experiences to the care of the patient and family. Cultural awareness challenges the nurse to look beyond his or her ethnocentric view of the world, asking the question “How are my values, beliefs, and practices different from those of the patient and family?” rather than “How is this patient and family different from me?” Exploring one’s own beliefs will raise an awareness of differences that have the potential to foster prejudice and discrimination and limit the effectiveness of care.3,46 Exploring answers to the same cultural assessment questions used for patients and families increases self-awareness (Box 36.2). Often this exploration identifies more similarities than differences. The universal aspects of life, family, trust, love, hope, understanding, and caring unite us all.
Acquiring knowledge about different cultural groups is the second component to striving for cultural competence, but knowledge alone is insufficient in providing culturally appropriate care.57 No one can expect to have in-depth knowledge of all cultural variations of health and illness beliefs, values, and norms. A suggested strategy is to identify the most common ethnic group/cultures living in the nurse’s community and to integrate a basic understanding of norms and practices impacting issues likely to arise in palliative and end-of-life situations. To strengthen knowledge, one should seek out community members, organizations, faith communities, and leaders in a shared understanding of needs and concerns.
It is important to be aware that knowledge gained of a particular group should serve only as a guide to understanding the unique cultural needs of the patient and family, which comes through individualized assessments. Other resources, such as cultural guides, literature, and Web-based resources, are available to assist the nurse in acquiring knowledge about specific groups.27 Box 36.4 lists several useful Web-based resources. It is important to remember that relying on culturally specific knowledge to guide practice, rather than individual assessment, is incongruent with culturally competent care.
This list offers suggestions of several useful resources. The list is not intended to be exhaustive but serves as a starting point for gaining more information.
Cultural skill is the third component of cultural competency.57 Skills in cultural assessment, cross-cultural communication, cultural interpretation, and appropriate intervention can be learned. Multiple tools are available to assess cultural behavior and beliefs. For the new nurse, key assessment questions, applicable in the palliative care setting, may be helpful in guiding the assessment (Box 36.2). However, nothing can replace sitting with the patient and family and asking them to tell the story of their heritage/family history and their cherished practices and beliefs.
The fourth component encompasses the concept of cultural encounters.57 Individuals with different ways of relating often misunderstand each other’s cues. The more opportunities we have to engage with persons with differing values, practices, and beliefs, the more we learn about others and ourselves and the less likely we are to draw erroneous conclusions about each other. Active engagement with community leaders and use of learning tools such as case studies and role plays all help expose nurses to varied cultural experiences.57 Increasing exposure to cultural encounters may also improve confidence in one’s ability to meet the needs of diverse populations.57
The fifth and final component of Campinha-Bacote’s model for cultural competence is cultural desire.57 This is the interest and openness with which the nurse strives to understand patients and families and the communities from which they come. Cultural desire is motivation to “want to” engage in the process of cultural competence as opposed to being “forced to” participate in the process. The desire is genuine and authentic and encourages the nurse to take advantage of cultural encounters and explore worlds beyond his/her own ethnocentric perspective. Such experiences lend opportunities for the nurse to grow both personally and professionally.57
Some researchers suggest that the term “cultural humility” is more acceptable than cultural sensitivity or cultural competence when trying to provide culturally appropriate.58 They have suggested that multiple generations of blended families and intercultural marriages have made it nearly impossible to know all about healthcare practices of particular communities. These social scientists and writers recommend that nurses strive to mindfully respect each patient/family member as unique individuals rather than the components of culture (ethnicity, religion/spirituality, place of residence, etc.) that might label them.23 We believe that integrating the proposed model of cultural competence with cultural humility into clinical practice will strengthen nurses’ ability to respect and support patient and family wishes in palliative care settings.
Given the changing population of the United States, we as nurses must advocate for the integration of cultural considerations in providing comprehensive palliative care. It is imperative that each of us move beyond our own ethnocentric view of the world to appreciate and respect the similarities and differences in each other. We are challenged to embrace a better understanding of various perspectives. Striving for cultural competence first requires an awareness of how one’s own cultural background impacts care. In addition, acquiring knowledge about cultures and developing skill in cultural assessment and communication are essential to improving palliative care for patients with life-limiting illnesses and their families. Most importantly, maintaining a sense of cultural humility, caring for each patient/family member as a unique human being with unique needs, and attending to those needs with dignity and respectfulness is the essence of providing culturally sensitive care.
This chapter encourages nurses to integrate cultural assessment and culturally appropriate interventions into palliative care. It is the hope of the authors that readers will enrich their practice by seeking new knowledge about different cultures through available resources and, most importantly, by respectfully interacting with the most valuable resources on cultural considerations we have—our patients and their families.
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