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Journal of Pediatric Hematology/Oncology:
doi: 10.1097/MPH.0b013e318230daf3
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Cultural and Spiritual Considerations in Palliative Care

Long, Carol O. PhD, RN, FPCN

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Capstone Healthcare Group, Phoenix, AZ.

Financial Disclosure: There is no financial interest to disclose regarding the submission of this paper. The author declares no conflict of interest.

Reprints: Carol O. Long, PhD, RN, FPCN, Geriatric Consultant, Capstone Healthcare Group, Co-Director, Palliative Care for Advanced Dementia, Beatitudes Campus, 1610 W. Glendale Ave, Phoenix, AZ 85021 (e-mail: carollong@cox.net).

Received August 2, 2011

Accepted August 2, 2011

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Abstract

Culture is a fundamental part of one’s being. Spirituality is integrated with culture and both play a significant role in a person’s journey through life. Yet, culture and spirituality are often misunderstood and may not seem to be important in healthcare settings. For adults with cancer and their families, this cannot be ignored. This paper reviews The Purnell Model of Cultural Competence as a framework for considering culture and spirituality in healthcare and discusses the importance of acknowledging and incorporating practices that support culture and spirituality in healthcare settings. Examples of how to include cultural and spiritual care in palliative and end-of-life care in healthcare settings are provided.

Culture is frequently equated to differences among race, ethnicity, or religious affiliation; however, this is a narrow view. Culture includes the knowledge, beliefs, art, morals, law, customs, and other capabilities and habits acquired by members of a society.1 Culture is the complex whole and reflects an ideal system of shared ideas, values, concepts, rules, and meaning about life.1–3 Culture is constantly evolving and is never homogeneous.4 Rather, it is the totality of group values, beliefs, and behaviors that are influenced by social and cultural contexts.5 Culture is shaped by historical, economic, social, political, and geographical events at any given point in time and guides an individual’s values, beliefs, and behavior. Culture defines who an individual is within the context of society and life itself. When a person’s culture is not acknowledged or valued, conflicts or cultural clashes can occur. These arise from actual or perceived injustices, inequities, power struggles, lack of trust, the presence of threats, biases and prejudices, discrimination, unfilled promises, communication barriers, and differences in styles of decision-making, to name a few.6 Inequality of care and healthcare disparities are 2 such outcomes.

Transcultural healthcare is directed toward holistic, competent, and beneficial healthcare.7 Culture impacts every day of our life and will influence how a person will interact with the healthcare system throughout an illness and at end-of-life.8 Suffering, illness, and death are culturally interpreted by the individual. A person’s beliefs, values, rituals, and outward expressions can impact care either positively or negatively.4

Spirituality is one component of culture that is often overlooked. Lack of attention to spirituality can lead to spiritual distress for adults facing life-threatening illness. In the end, a person’s needs may not be met. Thus, it is critical that healthcare professionals understand and implement best practices in attending to cultural and spiritual needs for the adult with cancer during their cancer diagnosis, recovery, and illness journey.

The purpose of this paper is to describe spirituality within the context of culture and its impact in palliative and end-of-life care for older adults with cancer. A theoretical framework is presented that assists healthcare professionals in understanding the key aspects of culture and spiritual care adopting a philosophy of cultural competence or the adaptation of care in a manner that is consistent with the culture of the client (person).9 Further, the approach in this paper is person-centered and person-directed care. Finally, practical recommendations are made to assist healthcare professionals assess and address culturally competent care for adults with cancer receiving palliative and end-of-life care services.

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ASSUMPTIONS ABOUT TRANSCULTURAL CARE

In this paper, there are 5 broad assumptions about transcultural care. The first is healthcare professionals’ desire to deliver culturally competent care. Healthcare professionals need to be culturally aware, acquire cultural knowledge, develop cultural sensitivity, and demonstrate cultural competency in their practice.10,11 Assessing a person’s cultural and spiritual background is the first step in assuring culturally competent care for adults with cancer.

The second assumption is that there is interrelatedness among multiple factors that create a worldview for the person. This highlights the need for healthcare professionals to recognize that culture is manifest in each person differently, and that every encounter with a person is a cultural encounter.10 Holistic healthcare for adults with cancer is essential.

The third factor is that spirituality is a fundamental dimension of quality of life and spirituality is one aspect of culture care.12 As such, spiritual well-being is an essential component of palliative and end-of-life care for the adult with cancer.

Fourth, the interdisciplinary team is essential in addressing spirituality and each member of the team has a unique contribution in meeting the spiritual needs of the person for whom they are caring. In the United States, there is an ongoing effort to achieve cultural competence in the healthcare workplace. In palliative and end-of-life care, the interdisciplinary team approach is vital to culturally competent care.

Finally, theoretical models or conceptual frameworks help to guide research and practice. These models ask questions such as: What factors influence cultural competence in healthcare? How can healthcare professionals deliver culturally congruent care? The theoretical model chosen for this paper is The Purnell Model of Cultural Competence. This framework has practical application across the lifespan and in the final stages of life. It incorporates the 12 Domains of Culture and acknowledges health within the metaparadigm of person, family, the community, and a global society (Fig. 1).9,13

Figure 1
Figure 1
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The primary characteristics of culture in this model include age, generation, nationality, race, color, sex, and religion. One of the 12 domains is spirituality. All healthcare professionals caring for adults with cancer along the continuum of care must acknowledge and understand the key components of spirituality within a cultural context to maximize positive caregiving in palliative and end-of-life care. Although this paper focuses on spirituality, this domain is interrelated and interactive with all other domains in this model.

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SPIRITUALITY

What is the spirituality domain? The spirituality domain attends to the following concepts within this model: knowledge of religious practices and beliefs, the use of prayer, the meaning of life, individual sources of strength, and spirituality and healthcare practices.9,13 These concepts need to be acknowledged, assessed, and addressed in palliative and end-of-life care if a holistic approach is endorsed. These ideas are described and expanded further.

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Spiritual and Religious Beliefs are Intertwined and Influenced by Culture

Religion is a formal and organized system of beliefs, values, and ideologies that are shared by an identifiable group of people as an expression of spirituality. Spirituality is a broader belief system and not the same as religion.14 It is a part of a person’s being and plays an important role in one’s life journey.15 Spirituality gives a person transcendence and connects the person with a higher being or other entity. This connectedness bridges to one’s faith system. Although these are overlapping concepts, spirituality and religiosity is unique to the individual. A person can be spiritual without ascribing to a specific faith belief or religion; thus it is important to ascertain the person’s religious or spiritual faith and practice.

Spirituality and religiosity are not stagnant; they evolve over time. One’s spiritual or religious beliefs may be challenged or become more important and relevant when a person has a life-threatening illness, such as cancer. Some examples when spiritual or religious beliefs may be questioned include decisions regarding initiating, withholding, or withdrawing life-sustaining treatment (eg, chemotherapy, artificial hydration and nutrition, surgery); the acceptance of organ donation, transplantation, and blood products; and decisions about autopsy or other end-of-life care rituals or beliefs.

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Prayer and Religious Practices are Outward Expressions of One’s Spiritual or Religious Belief System

Rituals, ceremonies, and special observances create stability, purpose, and understanding. Specific customs, folk medicines, and traditional therapies and prayer may give meaning and support to the person at end-of-life. Inquiring about the use of prayer and other religious practices is essential in the care of adults with cancer.

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The Meaning of Life and the Meaning of Illness is Grounded in One’s Connection to Spirituality or Religion and Their Health Belief System

Health beliefs may be strongly tied to a person’s cultural background and spiritual or religious affiliation. Expert communication skills are necessary when ascertaining a person’s health beliefs, what brings meaning to their life, and how illness impacts them. For example, should the adult know his/her cancer diagnosis? What family members will care for the person at life’s end? Is there certain healthcare practices prohibited owing to the person’s religion? Also, the healthcare professional needs to determine how the person prefers to be included in decision-making and if full disclosure is acceptable.16 These determinations are often culturally based with spiritual or religious implications.

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Inner Strength Draws Upon Hope in the Face of Uncertainty

It is important to facilitate the person’s awareness of their sources of strength and hope. Religious or spiritual practices may generate significant support and peace in trying times for the adult with cancer and their family.17 The question to a person who is facing terminal illness, “What gives meaning to your life?” assists healthcare professionals to address person-directed goals of care for the adult with cancer along the continuum of care.

Barriers to integrating spirituality may emerge in palliative and end-of-life. Healthcare professionals may have little understanding or display unintentional disregard for spirituality. They may assume that spiritual care is best left to religious counselors or the pastoral care team. It may be considered taboo to get too close to the person regarding spiritual matters that may be uncomfortable to discuss.

Adults with cancer may be hesitant to voice their religious beliefs or spirituality to healthcare professionals. Individuals may not believe that spirituality is relevant in their illness. They may possess fears that they may be misunderstood or their concerns considered unimportant if they discuss their religious or spiritual beliefs.

Dane Cicely Saunders refers to the concept of “total pain.” Total pain includes physical, psychological, social, and spiritual pain.18 Spiritual pain is real. It translates into a loss of meaning, hope, abilities, fear, and need for reconciliation. Additional symptoms include the feeling of abandonment, remorse, and betrayal.19 Suffering and conflict may be the end result if a person’s spiritual or cultural needs are not met. Characteristics of spiritual suffering may be physical (eg, pain, insomnia); emotional (eg, anger, depression, guilt, hopelessness, despair), behavioral (eg, refusal, self-harm, isolation), or mixed.20 Spiritual distress can occur when spirituality has been challenged in the face of illness or loss or when spiritual healing has been hindered. Like physical illness, spiritual healing is necessary.

Spiritual healing can occur even when relief from physical suffering cannot. Restoring meaning, hope, and expressing emotions are some ways to relieve spiritual suffering. Tapping into one’s own inner resources and strengths can lead to a greater transcendence of meaning and purpose in life. Using interdisciplinary team members, such as chaplaincy services or pastoral care team can facilitate this process. However, all members of the interdisciplinary team must share the responsibility in addressing spiritual needs of the adult with cancer.

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PRACTICAL WAYS TO INTEGRATE CULTURE AND SPIRITUALITY IN PALLIATIVE AND END-OF-LIFE CARE

Assuming the healthcare practitioner desires to provide culturally competent care; what are the practical ways that these aforementioned principles can be incorporated into the healthcare system or for the individual adult with cancer?

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Adopt Standards of Practice That Support Culturally and Spiritually Congruent Care

Healthcare professionals can increase their knowledge about culture and spiritual care through learning about and incorporating standards of practice in healthcare organizations. Specifically, professional nurses can adopt standards of practice that support culturally competent nursing care. The 12 standards from the American Academy of Nursing and the Transcultural Nursing Society, and reviewed by nurses from 78 countries, embraces the values of global perspectives within practice, administration, education and research for the individual, family, the community and population they serve.21 A second version if the standards will be presented at the International Council of Nurses in Malta, May 2011.

Another way is to adopt evidence-based palliative and end-of-care practices. The National Consensus Project Clinical Practice Guidelines for Quality Palliative Care stipulates the core precepts and guidelines of practice for healthcare professionals in clinical palliative care programs.22

* Domain 5 addresses spiritual, religious, and existential aspects of palliative care. Guideline 5.1 states: “Spiritual and existential dimensions are assessed and responded to based on the best available evidence, which is skillfully and systematically applied.” (p49).

* Domain 6 addresses cultural aspects of care. Guideline 6.1 stipulates that “the palliative care program assesses and attempts to meet the needs of the patient, family and community in a culturally sensitive manner.” (p56).

Preferred practices are listed after each set of guidelines and exemplars follow each of the domains.

With the National Consensus Project in place, the National Quality Forum adopted the Clinical Practice Guidelines for Quality Palliative Care.23 A list of 38 Preferred Practices in palliative care align with each of the National Consensus Project domains. This framework is currently under revision to align with the second edition of the National Consensus Project Guidelines.

The Joint Commission, an accreditation agency for hospitals and other healthcare settings in the United States, requires the routine assessment of spiritual needs.24 Table 1 provides an illustration how clinicians can include spirituality during assessment and care planning. Physician and chaplain roles are identified as key participants in the assessment process.

Table 1
Table 1
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Legislation in the United States has targeted cultural competence in healthcare settings. The National Standards for Culturally and Linguistically Appropriate Services in Health Care stipulates recommendations to make healthcare more culturally and linguistically practical within a healthcare organization and a community.25 These standards highlight measures to overcome cultural, language, and communication barriers. Three of these recommendations are listed below.

* Provide an environment in which the persons from diverse cultural backgrounds feel comfortable discussing their cultural health beliefs, spiritual beliefs, and practices in the context of negotiating treatment options

* Healthcare professionals need to be familiar with and respectful of various traditional healing systems and beliefs and, where appropriate, integrating these approaches into treatment plans

* When individuals need additional assistance, it may be appropriate to involve a patient-advocate, case manager, traditional healer, or ombudsperson with special expertise in cross-cultural issues/spirituality

Finally, in 2009, a consensus conference was held to analyze the research, solidify agreement about the importance of spirituality in healthcare, and make recommendations on how to improve the quality of spiritual care within the context of palliative care.26 The final Consensus Report recommendations noted 7 areas for improvement that included the necessity of spiritual care models, spiritual assessment, spiritual treatment/care plans, the interprofessional team, training/certification, personal and professional development, and quality improvement.

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Complete an Assessment and Plan of Care That Includes Aspects of Culture and Spirituality

There are several cultural and spiritual assessment tools that can be used in the clinical setting.27 Cultural identity should be included in all assessments. The CONFHER Model can be used as a systematic framework to obtain information necessary to develop a culturally appropriate plan for meeting the person’s needs.28 CONFHER captures information on the person’s communication style, orientation, nutrition, family relationships, health and health beliefs, education, and religion.

One tool for spiritual assessment is known as FICA (Faith, Importance, Community, Address), developed by Dr Christina Puchalski.29,30 The FICA tool collects information about and the importance of a person’s religion or spiritual beliefs, the involvement of a person’s community or social support, and how the healthcare provider can address spiritual or religious needs (Table 2).

Table 2
Table 2
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The SPIRITual Interview is another assessment tool.17,31 SPIRIT ascertains a person’s spiritual or religious belief system, integration with a spiritual community, ritualistic practices and restrictions, implications for medical care, and end-of-life care planning.

The person’s plan of care should incorporate findings from the assessment process into care planning and the person’s self-identified goals of care. Considerations should include identifiable spiritual distress and ways to enhance and promote or maintain spiritual health. Maintaining hope in the face of terminal illness, to some, may seem futile. Yet, religious involvement and spirituality are associated with better health outcomes.32 Thus, it is important to institute strategies for hope and minimize the opportunity for spiritual distress.

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Incorporate Members of the Interdisciplinary Team to Include Spirituality in Healthcare Practice

Interdisciplinary team members need to assess and address spirituality as part of their everyday practice. Nurses and physicians play an integral role in the assessment and care-planning processes. Additional team members who are instrumental in guiding assessments and interventions may be psychologists, the pastoral care team or clergy, and social workers. Interdisciplinary team meetings address spiritual assessment and implement care planning that attends to the cultural and spiritual needs of an adult with cancer. Key spiritual interventions in palliative and end-of-life care most important for the healthcare team include compassionate presence, bearing witness, and compassion at work.33 If care is to be holistic, healthcare professional must join the journey with the person and his or her family. The interdisciplinary team should consider the adoption of spiritual care models that incorporate spirituality assessment and intervention strategies in healthcare settings.26

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Create Community-based Outreach Initiatives That Support Culturally Based Cancer Care

Reaching out into the community with educational or service-related programming through community-based outreach initiatives achieves 2 primary objectives. It promotes awareness of community and individual needs and it acts on these needs through selected projects or activities. Table 3 identifies several community-based outreach initiatives that support individual and collective needs of adults with cancer.

Table 3
Table 3
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In summary, the attention to cultural and spirituality in all aspects of cancer care is essential. Healthcare professionals must be sensitive to the influence of culture when providing care for adults with cancer. Spirituality plays a significant role in quality of life. Culture and spirituality may be overlooked in the assessment and care planning at the end-of-life. Healthcare professionals may not know or understand how to incorporate best practices in these 2 areas into healthcare practice.

This paper provided insight into the fundamentals of cultural competence through The Purnell Model of Cultural Competence. The domain of spirituality is part of cultural practice and must be incorporated in the assessment and care-planning process. Various sources of information were provided that clinicians can access as they are creating culturally congruent and spiritually sensitive healthcare practices. Examples of best practices and ways to integrate these best practices are readily available for use in healthcare settings.

Finally, none of this work can be done alone by a single individual or discipline. Interdisciplinary collaboration is necessary when developing systems of care that include attention to culture and spirituality. For the adult with cancer, it takes a team of highly skilled healthcare professionals working together to maximize strategies that address the person and family’s goals of care. Healthcare services are incomplete if culture and spirituality is not assessed or addressed within the context of holistic care.

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ACKNOWLEDGMENT

The author thanks Larry Purnell, PhD, RN, FAAN for his thoughtful review of this paper.

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Keywords:

culture; transcultural; spirituality; religion; cancer

© 2011 Lippincott Williams & Wilkins, Inc.

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