CHAPTER 6. SPIRITUAL CARE ACROSS CULTURES
Charles Kemp
The purpose of palliative care is to relieve suffering in all dimensions of human life. Stated with greater precision, the purpose of palliative care is to facilitate an internal and external physical, psychosocial, cultural, and spiritual environment in which there is increased opportunity for a good death (dying), which may be seen as one in which reconciliation with God (or spirituality), self, and others occurs (Kemp, 1999). In this construct, symptom management (especially the physical environment) is a means to an end, not the raison d’être of palliative care.
DEFINITIONS AND CONCEPTS
▪ Spirituality is the incorporation of a transcendent dimension in life.
▪ Religion is an organized effort, usually involving ritual and devotion, to manifest spirituality. “Organized” does not necessarily imply group efforts; individual ritual and devotion are integral to all major world religions.
▪ Faith is the acceptance without objective proof, of something, such as God.
▪ Culture is “the learned and shared beliefs, values, and lifeways of a designated or particular group that are generally transmitted intergenerationally and influence one’s thinking and action modes” (Leininger, 2002).
▪ Cultural competence is the ability to “perform and obtain positive clinical outcomes in cross-cultural encounters” (Lo & Fung, 2003, p. 162).
▪ Spiritual care competence may be defined in a like manner: the ability to “perform and obtain positive clinical outcomes” in spiritual care encounters (Lo & Fung, 2003, p. 162).
Spiritual and cultural issues, characteristics, and needs are often intertwined and difficult to separate. In other cases, they may have little connection with one another and sometimes one is of greater importance than the other (Kemp & Rasbridge, 2004).
The incorporation of these concepts into the complex matrix of care for a person who is dying and her or his family enhances the opportunity for a good death—however one might define “good death.” The question then becomes, how does one incorporate these concepts into the care or, how does one perform such care? There are no universals in being able to provide the care. Unlike the use of opioid and adjuvant medications to treat pain, clear guidelines in providing culturally and spiritually competent care are difficult to establish on the shifting sands of individual differences in patients and caregivers, cultural and language barriers, religious and spiritual variables, changes in physical condition, and the myriad other factors affecting the patient and family.
As with the treatment of physical symptoms, failure also occurs in providing spiritual care and/or cross-cultural care. In postmodern society, radically different spiritual and cultural realities exist, and their intersection in, for example, the palliative care setting, is not always a success story. Spiritual care based on one faith (or on spirituality without a specific religious foundation) may not connect in any way with a person of a nonsyncretic faith such as evangelical Christianity or Islam (Narayanasamy, 2004a). Likewise, failure may accompany attempts to reach across the cultural chasm between a postmodern, high-tech culture and a traditional culture of the developing world. A myriad of individual, familial, systemic, gender, cultural, and other reasons for failure exist. Regardless of success or failure, working toward rapport and manifesting respect for all aspects of the patient’s life and being are essential qualities of health care.
There are, however, care-enhancing factors that have at least the potential to enhance the opportunity for a good death. For the sake of clarity these are considered separately here, but as with Yalom’s “curative factors” for group psychotherapy, they are intricately interdependent, part of a dynamic process, and of varying value in various situations and at various stages of the process (Yalom, 1995). The most straightforward way to use these care-enhancing factors is to operationalize them one by one or several at a time over time in providing palliative care. For example, clinical competence in physical care would be operational from the beginning of a particular care situation, as would nonjudgmental acceptance of the person receiving care. However, at the outset of care, the advanced practice nurse (APN) may lack cultural or spiritual care competence specific to the patient. This factor would be operationalized as the APN gains specific cultural competence or competence related to the patient’s religion. The term “over time” recognizes that the APN may require time to acquire or implement some factors and that the patient may not immediately (or ever) recognize that a factor is present, that the APN is accepting of the patient’s past, religion, or other aspects of the self.
CARE-ENHANCING FACTORS
Clinical Competence in Physical Care
Competent physical care is the first and an essential step in providing care in all human dimensions. While there may sometimes be exceptions (e.g., spiritual factors may transcend physical suffering), it is nearly always necessary to first or at least concurrently address physical issues (Kemp, 1999). The challenge for the APN is to maintain his or her physical care competencies and to apply evidence-based practice to the dynamics of palliative care. A rapid acquisition of new competencies may be required in the care of a patient with a diagnosis or problems such as an unusual paraneoplastic syndrome, cutaneous manifestation of a less common cancer, or other problem with which the APN is less familiar. Likewise, new and specific cultural or spiritual care competencies may need to be acquired.
Cultural Care Competence
As cited earlier, Lo and Fung’s definition of cultural competence is the ability to “perform and obtain positive clinical outcomes in cross-cultural encounters” (2003, p. 162). Within this broad competence are two more specific competencies:
▪ Generic cultural competence is “knowledge and skills applicable to any patient or community cross-cultural encounter” and is gained principally through ongoing mindful experience in cross-cultural encounters (Kemp, 2005). At least in part, such knowledge and skills include attributes such as those noted later (see Care-Enhancing Interventions).
▪ Specific cultural competence is “knowledge and skills applicable to patients and communities from specific cultural backgrounds” and is gained through study, investigation, and experience in working with specific cultures (Kemp, 2005, p. 45). It is important to recognize (1) how one’s own culture influences one’s perceptions (positive and negative) of other cultures and (2) that culture-specific knowledge is only a starting point to understanding individuals from that culture.
Spiritual Care Competence
As with cultural competence, spiritual care competence may be defined as the ability to “perform and obtain positive clinical outcomes” in patient care encounters that involve spiritual matters such as spiritual despair (or spiritual strength); similarly, there are two basic components in spiritual care competence (Lo & Fung, 2003, p. 162):
▪ Generic spiritual care competence is knowledge and skills applicable to any patient spiritual care encounter and is gained principally through ongoing mindful experience in spiritual care encounters. “Mindful” refers to participant-observer interactions The APN should remain aware of the effects of her or his care on patients and of personal reactions to patients in these situations—in terms of both individual patients and any patterns of effect(s).
▪ Specific spiritual care competence consists of knowledge and skills applicable to patients and communities from specific religious or faith backgrounds. Specific competence is gained through study, investigation, and experience in working with people from specific religions. It is important for the APN to recognize that (1) a person’s own faith background influences that person’s perceptions (positive and negative) of other faiths and (2) faith- or religion-specific knowledge is only a starting point for understanding individuals from that faith background.
Religion and faith are often highly charged or controversial topics. In some cases, books and other resources are attempts to justify the author’s position, positive or negative, about the topic, especially when writing about faiths other than the author’s. While it is impossible for most health professionals to read the scripture of every world religion, it will benefit professionals and their patients to be familiar with primary scriptural sources and commentary on faiths with which there is contact (e.g., practitioners who care for Muslim patients will benefit from reading the Qur’an and related commentary).
Care-Enhancing Interventions
The following discussion of care-enhancing factors is based on the idea of the existence of basic human needs that generally hold true across cultures and time. The factors/human needs as explicated here are not definitive, that is, there are authors who have noted more, fewer, or slightly different needs, but these are likely acceptable to most practitioners. Care-enhancing factors include the patient experiencing (and the APN promoting) the following (Bartel, 2004; Galek, Flannelly, Vane et al., 2005; Maslow, 1998; Narayanasamy, 2004b; Yalom, 1995):
▪ Self-actualization or growth and fulfillment
▪ Meaning
▪ Hope
▪ Relatedness (spiritually, to God, deity or deities, higher power; culturally, to culture)
▪ Forgiveness or acceptance
▪ Transcendence
Religion, faith, and culture offer answers or guidance to varying extents to answers to these issues. A lack (partial or complete) in religion, faith, or culture may result in difficulties for the patient in addressing these issues. Such a lack also, of course, guides the APN in providing care.
Self-Actualization or Growth and Fulfillment
Self-actualization or growth and fulfillment may be viewed as integral to spiritual growth. Indeed, in the discussions below, self-actualization or growth and fulfillment are implicit in almost every category of care-enhancing factors. In this section, however, the discussion is focused more on cross-cultural care.
Maslow (1998) was clear that self-actualization is the realization of the full human and preexistent potential of a person—which is not dissimilar to the purposes of palliative care given above. For the vast majority of humankind, self-actualization is not a state a person reaches and remains in. Rather, it is a process of progress mostly toward a higher state of being with all the shortcomings inherent in being human.
Assessment and Interventions
Tripp-Reimer, Brink, & Saunders (1984) published a definitive short cultural assessment tool, which is adapted here. Readers may note numerous potential connections to both spiritual issues (e.g., what do you think caused your problem?) and insights into individual or family issues in the context of palliative care (e.g., what problems has your sickness caused you or your family?):
▪ What do you think caused your problem?
▪ Do you have an explanation for why it started when it did?
▪ What does your sickness do to you; how does it work?
▪ How severe is your sickness? How long do you expect it to last?
▪ What problems has your sickness caused you or your family?
▪ What do you fear about your sickness?
▪ What kind of treatment do you think you should receive?
▪ What are the most important results you hope to receive from the care team?
Applying the questions to what one already knows about the patient—for example, a Mexican migrant worker who is Catholic, separated from family, depressed, and in pain—should generate at least a preliminary care plan related to the patient’s spiritual and cultural beliefs.
Finding or Searching for Meaning
The search for meaning is central in life and in the process of dying. In a strictly personal sense, this search may include a review of life and its events, fulfillments, inadequacies, positive aspects, and mistakes and an exploration of how to live the remaining days of life. In a broader, yet still personal sense, the search for meaning may also include the meaning of dying, human existence, and suffering (Buckley & Herth, 2004; Kemp, in press; Parker-Oliver, 2002).
Assessment and Interventions
Although patient behavior may offer clues to whether meaning (or its negative, meaninglessness) is an issue, direct assessment is usually the best way to (1) discover if meaning or meaninglessness or both are issues and, (2) if meaning is not an issue, build on or reinforce the presence of meaning as a strength. Direct assessment includes questions (Kemp, in press; Narayanasamy, 2004b) such as the following:
▪ “What gives you a sense of meaning or purpose in life—now or in the past?” Looking at present and past may yield insight into existing spiritual or cultural issues that have their basis in the past (e.g., a refugee who was an influential or important person in her or his homeland may exist in a state of meaninglessness and powerlessness in the present).
▪ “If you had your life to live over again, what would you want to be different?” The answers to this and other such questions are likely to be given over time as the patient has time to remember and reflect. This question is in some respects psychosocial in nature, but in other respects it is linked to spiritual issues in that it looks to the meta-question, “Is there judgment in the universe, and if there is, will I be found wanting?” (see Forgiveness or Acceptance).
▪ “What does it mean to you that this (e.g., end-of-life, suffering, and so on) is happening?” Religion, faith, and culture all may provide answers, and in some cases the answers may be problematic for the patient, such as when dying and suffering are perceived as punishment for sins.
In general, intervention focuses on supporting the patient on her or his journey through the issues related to these questions. Often, there is a reluctance to face mistakes or fears in life either with another person or even within oneself. At the same time, however, there may also be the recognition that this is the last chance to look back and perhaps find resolution. The central role of the APN in the patient’s search for meaning is to support and accept the person and be willing to listen to difficult thoughts and feelings. Often, the regrets are the common mistakes made in life, such as dishonesty and deceptions. In some cases, the story is more difficult, such as being a victim of sexual abuse (or an abuser).
Many Christians believe that anyone who is not a Christian will go to hell. This presents a potential for conflict among the APN (who does not wish for the patient to go to hell), the patient (who does not have the same belief and does not wish to change religions), and the institution (few Western health care institutions support attempts to change the faith of patients). In most cases, Western institutional policies on patient rights are sufficient to prevent conflict around religious and faith issues. Comforting the APN who is in this situation, Christian scripture is clear on the question of how one treats the afflicted (without respect to the other person’s faith): “I was hungry and you fed me … I was sick and you looked after me …” (Matthew 26: 35-36). Islam is also strongly evangelistic, but assignment to heaven or hell is based solely on whether a person is or is not a believer.
Experiencing Hope
In terminal illness, hope for a good outcome shifts from hope for cure to hope for a good death (although some hope for cure commonly coexists). In a few unfortunate cases, the loss of hope for a cure means the loss of all hope and a state of despair. Although the varieties of hope are as varied as the patients who are hoping, hope for a good death often includes hope for symptoms being managed with minimal suffering, living fully within the constraints of the illness, reconciliation (with self, others, and God), a good future for survivors, and life after death (Duggleby & Wright, 2004; Kemp, 1999; Little & Sayers, 2004).
Assessment and Interventions
As with meaning, a direct approach to understanding the patient’s sense of hope is often the best means of assessment, for example, “Let’s talk about hope, Mr. Simpson. Given your condition, what do you hope for?” A common answer to this question may elicit a humorous or wry response, which often includes the hope “to not die.”
▪ Hope for symptoms being managed/minimal suffering. This area is usually focused on physical care and, as has been previously discussed, is a primary concern. There may be no greater comfort to patient or family than a health team that vigorously and competently works to relieve pain, dyspnea, nausea, and the other physical symptoms that may accompany the illness.
▪ Hope for living as fully as possible. The hope for a full life within the context of terminal illness includes, but is not limited to, maintaining as much independence and control as is possible (including dying at home), maintaining or even increasing connections with loved ones, and maintaining or increasing connections with religion and faith (Buckley & Herth, 2004; Tang, 2003).
▪ Hope for reconciliation with self, others, and God was noted earlier to be central to the purposes of palliative care (indeed, to human existence) and may be approached as follows:
Reconciliation with self is addressed through exploration of the question of how life was lived in relation to what might have been. In a spiritual sense, reconciliation with self can be seen as self-realization and may be achieved through spiritual practice, study, or grace.
Reconciliation with others is focused on healing relationships with loved ones. Regardless of culture or religion, there are patients with highly conflicted or even toxic relationships (such as when there was extreme abuse) and reconciliation is not always possible. When this is the case, the goals of care shift toward understanding and acceptance.
Reconciliation with God presupposes (as do these other reconciliations) a previous relationship or “re” conciliation. The prior relationship might be seen as one in earlier years or as one that was always there, whether in consciousness or not. It is not uncommon for people who enter into a deep relationship with God or a state of enlightenment to say something such as, “It was like I came to myself [see Reconciliation with Self] and realized these were things I had always known.”
How are these reconciliations achieved? First, it must be recognized that these cannot be conferred by another. However, it is realistic to offer the hope that they are possible. One of the underlying, but not always expressed, questions in terminal illness is, “Can I do this?” The question may even be assumed by the APN, who might ask the patient, “Are you wondering if you can do this?” Or simply say to the patient, “You know, you can do this. You can go through this tough time and may even find there is more to learn in life” (Kemp, in press).
▪ As with the hope to live, hope for a good future for survivors is not always realistic. Among older patients, the death of one spouse often means a significant drop in income and a diminishment of social or other resources. In the case of a survivor with a disability such as mental illness, the future prospects may be markedly less when a loved one dies. On the other hand, reconciliation leaves a lasting positive memory (Duggleby & Wright, 2004).
▪ Hope for life after death, through either survival of the soul or transmigration of the soul, is a tenet in all major world religions, at least one of which is connected to some extent with every culture. Here, the role of religion and faith in palliative care settings is obvious (although certainly not limited to the issue of life after death) (Kemp, 1999).
A little over a month before he died, the famous atheist Jean-Paul Sartre declared that he so strongly resisted feelings of despair that he would say to himself, “I know I shall die in hope.” Then, in profound sadness, he would add, “But hope needs a foundation.” (Lugt, 1995).
Spiritual Relatedness
Relatedness in a spiritual sense is to God or some approximation of what would be considered as God, such as deity, higher power, and so on, and/or relatedness to religion or religious practice—not relatedness to other people (Kemp, in press; Narayanasamy, 2004b). As noted earlier, to at least some extent all cultures (although not all political systems) support religion and faith. Of course not everyone believes in God, and a lack of belief in God does not mean a bad death—whether among atheists or those whose religion does not have a god. In a formal sense, Buddhism denies the presence of God, but in a practical sense, the concept of God or deity is very much alive in the practice and devotion of many Buddhists.
Assessment and Interventions
Two questions that are helpful in terms of spiritual connectedness are, “Talk about what you believe in” and “Talk about what you believe about God or in religion.” Simply the opportunity to explicate and explore beliefs is enormously therapeutic in most cases.
In some instances, there is a negative view of religion and little or no relationship with God. It is helpful to determine when the negative view or relationship began because often there is a particular incident when a person felt failed by religion or faith. Exploration of such a situation may uncover a desire to return to an earlier, more positive view or relationship. Means of promoting a positive view or relationship are centered on creating or encouraging a therapeutic milieu that encourages spirituality and religion, regardless of patients’ faiths or cultures. This includes
▪ Individual staff members manifesting values consistent with spirituality—working in a loving, caring, respectful, accepting, and diligent manner
▪ Supporting patients and families in exploring and explicating their own beliefs
▪ Enabling prayer and religious ceremonies or rituals consistent with the patient’s religion and culture
People from “other cultures”—especially refugees and immigrants—may feel a strong sense of aloneness, especially at end-of-life. They are likely to be deeply touched by any attempt to reach across barriers or gaps between cultures. Being respectful and accepting of others is, of course, fundamental to cultural competence.
Forgiveness or Acceptance
A fundamental question at end-of-life is, “Is there judgment, and if so, how will I be judged?” Every major world religion says, unequivocally, yes, there is judgment and provides details on how one is judged. Judgment in the monotheistic religions (Judaism, Christianity, and Islam) is final and includes the possibility of forgiveness or punishment (or, in some cases, an intermediate state). In the case of Hinduism and Buddhism, how one lives determines the state in which one is reborn, and because there is an endless cycle of deaths and rebirths until enlightenment is achieved, there is no final judgment or forgiveness. The focus among Hindu or Buddhist patients would then be on acceptance of how life was lived rather than on forgiveness.
Assessment and Interventions
As with the question of relatedness with God or a higher power, assessment is part of the intervention, that is, the opportunity to explicate and explore beliefs and concerns regarding forgiveness or acceptance. A powerful question that goes to the heart of the issue is, “What do you think will happen to you?” (Narayanasamy, 2004b, p. 1143).
A therapeutic milieu that encourages spirituality and religion, regardless of patient faith or culture, is critical to intervention. Being accepting of patients as individuals, of their faiths, and of their cultures is probably the most important intervention. Acceptance is an individual characteristic of the APN but also may be an institutional value.
Although experienced as offenses against God, in many situations the acts of commission or omission for which people seek forgiveness were against people, either others and/or self (it is often easier to be forgiven by others than by oneself). No lay person or health professional can confer forgiveness, nor can clergy except as a representative of God, but acceptance and thus, indirectly, forgiveness can be manifested. Being accepted by another is an important first step on the journey toward being forgiven.
Transcendence
Transcendence is going beyond oneself or one’s circumstances—even going beyond the awesomeness of death. In several places in this chapter it has been noted that in life, things happen. In every life there are losses and mistakes, and in some respects life is painful and sad. How can a person go beyond the losses, mistakes, and sadness of life and thus come to redefine life, death, and relationships?
Assessment and Interventions
A person who has transcended the pain of life and awesomeness of death will generally lack anxiety, anger, or depression and will manifest peace and harmony, especially with respect to relationships with self, others, and God or faith. If there is any doubt, one could note the absence of conflict and presence of peace, and ask the patient if those perceptions are accurate, followed by something to the effect of, “Talk about how you feel or what is going on with you (and how did you get to this place?).”
Elisabeth Kübler-Ross’ (1969) final stage in dying is termed acceptance, but it might also be seen as transcendence. In Kübler-Ross’ construct, the patient worked through denial, anger, bargaining, and depression to reach a state of acceptance; indeed, working through these stages (or, more accurately, states of mind) tends to increase the likelihood of, but not necessarily lead to, acceptance or transcendence. The same holds true for the care-enhancing factors presented here: the presence of self-actualization, meaning, hope, relatedness, and forgiveness or acceptance in a person’s life increases the likelihood of, but does not lead directly to, transcendence.
Transcendence is not acquired by a set of behaviors or interventions. It is a great blessing that may or may not last. One can only give thanks.
CONCLUSION
The critical issues in providing competent spiritual care across cultures are
▪ Understanding that the ultimate purposes of end-of-life care are reconciliation with God (or spirituality), self, and others
▪ Acquiring general and specific knowledge of cultures, religions, and the common end-of-life problems
▪ Being accepting of faiths, cultures, and the people who find meaning in them
▪ Being willing to work through processes of care and to not always achieve success
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