REVIEW URRENT C OPINION
Spirituality and religiosity in supportive and palliative care Marvin O. Delgado-Guay
Purpose of review To provide an updated overview about the role of spirituality and religiosity in the way patients with lifethreatening illnesses cope, and the importance of providing a comprehensive spiritual assessment and spiritual care in an interdisciplinary team work setting, such as supportive and palliative care. Recent Findings Spirituality is a lifelong developmental task, lasting until death. Spirituality and religion continue to play an important role across cultures globally. Spirituality is seen as a vital element connected to seeking meaning, purpose, and transcendence in life. Many individuals recognize their life-threatening illness as an opportunity for spiritual growth; therefore, these individuals who have access to spirituality through meaning, purpose, connections with others, or connections with a higher power will have the spiritual resources necessary to adjust to adverse circumstances. It is extremely important to pay attention to patients’ and caregivers’ cultural and spiritual identity and spiritual needs. Summary The interdisciplinary supportive and palliative care model of spiritual care proposes inclusion of the spiritual domain in the overall screening and history-taking process and spiritual care by all members of the team, including a full spiritual assessment by a professional chaplain. Research in this extremely important field needs to continue growing. Keywords palliative care, religion, spirituality, supportive care
INTRODUCTION Spirituality is a dimension of personhood, a part of our being, and religion is a construct of human making, which enables the conceptualization and expression of spirituality [1]. Therefore, religiosity relates to the expression of one’s spirituality through behaviors and practices grounded in a particular religious denomination [1]. Spiritual and religious beliefs can affect the way patients cope with illness-related stress and disease burden [1–3]. Spirituality contributes to health in many people, and it is an important component in the care of patients with life-threatening illnesses [3,4]. Spirituality is a lifelong developmental task, lasting until death. It serves several purposes in different stages of life [5]. National surveys consistently support the idea that religion and spirituality are important to most individuals in the general population. More than 90% of adults express a belief in God, and slightly more than 70% of individuals surveyed identified religion as one of the most important influences in their lives [1,6]. www.supportiveandpalliativecare.com
A key goal of supportive or palliative care services is to alleviate sufferings of patient and caregivers. Suffering is a biopsychosocial, multidimensional construct that includes physical, emotional, as well as spiritual pain or struggles. The presence of spiritual pain can be an important component not only of patients’ distress with life-threatening illness with chronic or acute pain and other physical and psychological symptoms [7], but also a significant source of suffering for caregivers [8]. Spiritual care is an important part of healthcare, especially when facing the crisis of advanced illnesses
Department of Palliative Care and Rehabilitation Medicine, Unit 1414, University of Texas MD Anderson Cancer Center, Houston, Texas, USA Correspondence to Marvin Omar Delgado-Guay, MD, Department of Palliative Care and Rehabilitation Medicine, Unit 1414, University of Texas MD Anderson Cancer Center, 1515 Holcombe Blvd., Houston, TX 77030, USA. Tel: +1 713 745 8190; fax: +1 713 792 6092; e-mail: [email protected] Curr Opin Support Palliat Care 2014, 8:308–313 DOI:10.1097/SPC.0000000000000079 Volume 8 Number 3 September 2014
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Spirituality and religiosity in supportive and palliative care Delgado-Guay
KEY POINTS Many patients report spiritual concerns and needs arising within illness. Many patients desire spiritual care from medical providers, but its provision remains infrequent. Religion and spirituality play an important role in coping with disease-related symptoms, improves quality of life, and impacts medical decision making near death. Existential and spiritual suffering is among the most debilitating conditions in end-of-life care, and yet it lacks a clear definition, concept, effective assessment, and measurement. The process of spiritual assessment of patients with lifethreatening illnesses and their families/caregivers starts with a spiritual screening/history that can lead to an in-depth complete spiritual assessment of their spiritual needs, struggles and spiritual interventions. Family caregivers may experience typical patterns of spiritual well being and distress in parallel with patients. Research is needed to better understand the role of medical professionals in spiritual care provision. Spiritual care is part of the all members of the supportive and palliative care team. Multidisciplinary team approach to provide a touch of hope, and a touch of love, to decrease suffering and to improve the quality of life of patients with lifethreatening illness and families in distress.
and at the end of life. Spiritual care is an essential domain of quality supportive and palliative care [3,9]. Unfortunately, medical systems often fail to sufficiently address and provide for the spiritual needs of patient’s facing advanced illness [10]. When spiritual needs and spiritual distress are not addressed, patients are at risk of depression and reduced sense of spiritual meaning, peace, and dignity [11]. The purpose of this review is to provide an updated overview about the role of spirituality and religiosity in the way patients with life-threatening illnesses cope, and the importance to provide a comprehensive spiritual assessment and spiritual care in an interdisciplinary team work setting, such as supportive and palliative care.
SPIRITUALITY AND RELIGIOSITY IN THE CONTINUUM OF CARING FOR PATIENTS LIVING WITH LIFE-THREATENING ILLNESSES Spirituality and religion continue to play an important role across cultures globally. Spirituality is
experienced broadly as an important dimension of how patients live with advanced and terminal illness [12]. Factors that help and give strength during the illness process include strong spiritual components of family relationships, the meaning of God or a higher being, and spiritual practices [12]. It is always important to remember that patients facing life-threatening illness and nearing the end of life have the need to be taken seriously, independently of what their spirituality consists of [13]. Spirituality is seen as vital element connected to seeking meaning, purpose, and transcendence in life [3,12,14] and direction to find self-worth and to belong to community, and to love and be loved, often facilitated through seeking reconciliation when relationships are broken [15]. This is particularly the case in the USA where 93% of the population holds belief in God or a higher power [16]. In a cohort of advanced cancer patients evaluated in the palliative care outpatient clinic, almost all of them considered themselves spiritual (98%) and religious (98%). The patients also reported spirituality and/or religiosity help them in coping with their illness (99%), as a source of strength (100%), and have a positive impact on their physical (69%) and emotional (84%) symptoms [7]. Many individuals recognize their life-threatening illness as an opportunity for spiritual growth. Therefore, these individuals who have access to spirituality through meaning, purpose, connections with others, or connections with a higher power will have the spiritual resources necessary to adjust to adverse circumstances [17]. The greater level of spirituality through internal spiritual practices and experiences is associated with less severe depression. In this matter, spirituality provides a system of meaning that emphasizes hope, adaptation, insight, and the belief that circumstances are not senseless or meaningless [18]. Thune´-Boyle et al. [19] reported that using religious or spiritual resources in the coping process during the early stages of breast cancer may play an important role in the adjustment process in patients with breast cancer. It is extremely important to recognize, independently of the stage of the illness, that patients may benefit from having their spiritual needs addressed, as experiencing some form of religious or spiritual struggle may serve as a barrier to illness adjustment. In a semistructured qualitative interview of a sample of cardiac and cancer survivors, Young et al. [20] found that these individuals often accessed spirituality by enhancing connections in their own lives: with a higher power, people, their work, or themselves. Having these connections helped the individuals to have greater meaning and purpose in
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their lives, and to adjust to their life-threatening illnesses. Renz et al. [21] documented advanced cancer patients’ spontaneous expressions of spiritual experiences during hospitalization and found that 135 out of 251 patients communicated spiritual experiences of transcendence. These experiences were associated with healing connections with profound and powerful reactions: physically (less pain, sometimes less dyspnea), psychologically (less anxiety, better coping with illness, life, and death), and spiritually (altered spiritual identity). Facing a life-threatening illness and the end of life can be a spiritual crisis, and having a sense of spirituality has been identified as an important coping resource. The assessment of spiritual or religious needs can identify the specific services and assistance which the patient most desires and is a first step in designing needs-tailored interventions [22].
RECOGNIZING SPIRITUAL OR RELIGIOUS NEEDS OF PATIENTS LIVING WITH LIFETHREATENING ILLNESS AND THEIR CAREGIVERS It is always important to consider that the words which patients use to communicate the perceptions of their end-of-life needs reveal how important it is to assess the dynamics of patient–clinician communication [22,23]. At the same time, clinicians caring for persons with life-threatening illness need to recognize that persons who have spiritual distress and thus need spiritual care are the least likely to ask for it [24]. Although the importance of religion and spirituality in coping with cancer and other diseases is high for many people and well documented, healthcare providers and medical institutions often do not do a good job of attending to this dimension of the patient’s care [25]. It has been reported that over 70% of cancer patients said that their spiritual needs were minimally or not at all supported by the medical system [26]. Most importantly, the attention to religious or spiritual issues has been shown to have a significant influence on several important indicators of quality care. Several studies have documented the positive relationship between meeting spiritual needs and patient satisfaction [27,28]. Several other findings suggest that attention to spiritual needs improves quality of life and reduces use of aggressive care at the end of life [29]. In a study by Delgado-Guay et al. [7], among a palliative care population, 44% of advanced patients reported experiencing ‘spiritual pain.’ Patients with spiritual pain had significantly lower self-perceived 310
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religiosity and spiritual quality of life. Likewise, in a study by Alcorn et al. [30] of advanced cancer patients receiving palliative radiation therapy, 85% identified one or more spiritual issues with a median of four issues per patient among 14 spiritual issues assessed. The most common spiritual issues reported were as follows: ‘seeking a closer connection with God or one’s faith,’ 54%; ‘seeking forgiveness (of oneself or others),’ 47%; and ‘feeling abandoned by God,’ 28%. Patients with life-threatening illness struggle with spiritual or existential concerns alongside the physical and emotional challenges of their illness. It also described that as an advanced heart failure patient’s condition deteriorates, the emphasis shifts from ‘fighting’ the illness to making the most of the time left. These spiritual concerns could be addressed by having someone to talk to, supporting caregivers, and staff showing sensitivity or taking care to foster hope [31]. It is also important to notice that caregivers of patients of advanced illnesses have spiritual needs or concerns and suffering. Persons who take responsibility for caregiving are engaging in ‘meaning-making’ activities by expressing important values such as hope, dignity, togetherness, involvement, and continuity, and demonstrating their desire to strengthen family ties and deepen personal growth [32]. People who are more religious feel more positively about their role as caregivers, get along better with those for whom they provide care, and express less caregiver distress [33]. Faith communities play an important role in fostering belief systems of responsibility and compassion that are likely to help caregivers doing the emotionally difficult work of caring for others [32]. Caregivers’ quality of life might decrease in direct proportion to declines in the patient’s functioning and health and increases in the patient’s need for care and the intensity of his or her symptoms and distress [34]. Although caregivers have reported that their satisfaction in the spirituality and meaning domains increased over time, they might be less satisfied during the bereavement period [35], most likely because their spiritual needs have not been optimally addressed during the dying phase [36]. A study by Delgado-Guay et al. [8] involving 43 caregivers of patients with advanced cancer in an outpatient palliative care clinic reported that all the caregivers considered that spirituality and religiosity helped them to cope with their loved one’s illness, and many of them reported that spirituality and religiosity had a positive impact on their loved one’s physical and emotional symptoms. Interestingly, Volume 8 Number 3 September 2014
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also it was reported the presence of spiritual pain in 58% of these caregivers. Caregivers with spiritual pain had higher levels of anxiety, depression, denial, more behavioral disengagement, more dysfunctional coping strategies, and worse quality of life than those who did not have spiritual pain. Communication with patients and caregivers about spiritual issues ranges from a preliminary screening to identifying potential spiritual issues to a spiritual history to a spiritual assessment and, in some instances, if appropriate, spiritual interventions to decrease spiritual pain or suffering of patients and caregivers [8]. It is extremely important to pay attention to the patients’ and caregivers’ cultural [37] and spiritual identity and spiritual needs upon admission and throughout the course of their illness [38]. The use of a formalized screening tool and the increased awareness and sensitivity of the health care providers can assist patients and caregivers in naming their spiritual needs and better provide spiritual care through referrals to a board certified chaplain or other spiritual counselor [38].
HEALING THROUGH SPIRITUAL CARE INTEGRATED INTO THE SUPPORTIVE AND PALLIATIVE CARE SETTING The process of good spiritual care involves all healthcare professionals and mimics the process for other domains of care. Studies have consistently indicated the desire of patients with serious illness and end-oflife concerns to have spirituality included in their care. Although there is emerging scholarly bodies of literature to support the inclusion of spiritual care as part of a biopsychosocial-spiritual approach to healthcare, palliative care programs are working for strategies for effecting institutional change and resources to assist in improving the delivery of spiritual care [39,40,41 ]. Spiritual care is an essential domain of quality palliative care [3,9]. Spiritual care (both religious and nonreligious) is a vital factor in well being and quality of life at the end of life, and the multidisciplinary supportive and palliative care is needed in acute and long-term care settings [41 ,42] to address spiritual and psychosocial needs. One of the issues which often arise with regard to spiritual care is that even when teams accept the necessity of participation in spiritual screening and history taking, they are uncomfortable taking on any role in the delivery of spiritual care itself. In a multi-institution study involving patients with advanced cancer, physicians, and nurses, it was found that the more than 70% of them believed that routine spiritual care would have a positive impact &
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on patients. Unfortunately, only 25% of patients had previously received spiritual care, and physicians held more negative perceptions of spiritual care than patients [43]. Practitioners who are personally uncomfortable with religious or spirituality should respectfully identify if a patient has spiritual needs and then refer the patient to chaplaincy or clergy. This approach, however, might best be understood as what is minimally appropriate in spiritual care rather than its gold standard [40,44]. It will be important to continue developing interdisciplinary training programs through a comprehensive curriculum for medical schools, schools of nursing and social work, allied health, and clinical pastoral programs. The interdisciplinary palliative care model of spiritual care proposes inclusion of the spiritual domain in the overall screening and history-taking process, as well as a full spiritual assessment by the professional chaplain as needed. Again, the generalist or specialist model presumes the professional chaplain as the specialist [25]. The plan should include the spiritual care interventions for all members of the healthcare team. It is extremely important to emphasize that the provision of spiritual care is shared by all members of the team in the same way that documentation of spiritual need is shared. It is important to remember that taking time with a patient and being empathetic and compassionate is healing, and it is spiritual care. Any staff member can take the time to listen to a patient’s story, to listen to a patient’s angst, and to be a compassionate presence with that patient. Many times this is all that the patient asks. The patient is not looking for answers. What is spoken as a spiritual question is most often not a question at all, but an expression of spiritual pain. Spiritual interventions can be understood as therapeutic strategies that incorporate a spiritual or religious dimension as a central component of the intervention. This practice advocates for a holistic view of health. Spirituality is interwoven in the therapeutic process and cannot be separated from it [45]. Religious or spiritual activities can be practiced through the continuum of care to help support persons with life-threatening illness. Religious interventions are more structured, cognitive, denominational, external, ritualistic, and public, whereas spiritual interventions are more crosscultural, affective, transcendent, and experiential. Interventions should be agreed with the patient, and tailored to their worldly perspectives to help them during an illness or crisis [45]. Chaplains can help patients and families find meaning in their hospitalization and illness
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experiences. At the same time, to provide traditional rituals including prayers, blessings, baptisms, funerals, and periodic memorial services at the hospital for families of patients who have died. When appropriate, another service provided by the chaplain is to serve as a liaison to the patient and family’s faith community [46].
CONCLUSION In the supportive and palliative care setting, we need to be aware of the very strong spiritual and religious needs of the patients with life-threatening illness and their caregivers and also of the varieties of ways in which they can access this type of support either by providing them access to chaplains within the supportive or palliative care team or by facilitating and encouraging patient access to religious leaders or traditional healers. Maintaining communication and the friendly welcoming attitude toward these individuals will further personalize care for patients and caregivers in this setting, and it is usually associated with increased satisfaction of care from the patient and caregivers. It is with priority to continue growing in the development of a biopsychospiritual personalized approach caring patients with life-threatening illness and their caregivers, training of healthcare professionals in assessing and integrating spirituality into healthcare, and the active participation of trained chaplains to be involved in the care of patients with complex spiritual suffering. Another priority is to continue supporting research in this area in different settings as research to date are limited by reductive representations of spirituality and religiosity, and the conduct of research by health professionals within healthcare communities has been demarcated from disciplines and interpretive traditions of spirituality or religion [47]. Acknowledgements None. Conflicts of interest The author has declared no conflicts of interest.
REFERENCES AND RECOMMENDED READING Papers of particular interest, published within the annual period of review, have been highlighted as: & of special interest && of outstanding interest 1. National Cancer Institute. Spirituality in cancer care. September 2012. http:// www.nci.nih.gov/cancertopics/pdq/supportivecare/spirituality. [Accessed March 2014]
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2. Peteet JR, Balboni MJ. Spirituality and religion in oncology. CA Cancer J Clin 2013; 63:280–289. 3. Puchalski C, Ferrel B, Virani R, et al. Improving the quality of spiritual care as a dimension of palliative care: the report of the consensus conference. J Palliat Med 2009; 10:885–904. 4. Puchalski CM. Spirituality in the cancer trajectory. Ann Oncol 2012; 23 (suppl 3):49–55. 5. Neuman ME. Addressing children’s beliefs through Fowler’s stages of faith. J Pediatric Nurs 2011; 26:44–50. 6. Gallup G. The religiosity cycle. Gallup Tuesday briefing [on-line] 2 June 2002. Available at http://www.gallup.com/poll/6124/Religiosity-Cycle.aspx. [Accessed May 2014] 7. Delgado-Guay MO, Hui D, Parsons HA, et al. Spirituality, religiosity, and spiritual pain in advanced cancer patients. J Pain Symptom Manage 2011; 41:986–994. 8. Delgado-Guay MO, Parsons HA, Hui D, et al. Spirituality, religiosity, and spiritual pain among caregivers of patients with advanced cancer. Am J Hosp Palliat Care 2013; 30:455–461. 9. National Consensus Project: the development of clinical practice guidelines for quality palliative care. http://www.nationalconsensusproject.org/. April 24, 2013. Accessed May 2014. 10. El Nawawia NM, Balboni MJ, Balboni TA. Palliative care and spiritual care: the crucial role of spiritual care in the care of patients with advanced illness. Curr Opin Support Palliat Care 2012; 6:269–274. 11. Pearce MJ, Coan AD, Herndon JE, et al. Unmet spiritual care needs impact emotional and spiritual well being in advanced cancer patients. Support Care Cancer 2012; 20:2269–2276. 12. Asgeirsdottir GH, Sigurbjo¨rnsson E, Traustadottir R, et al. , et al. ‘‘To cherish each day as it comes’’: a qualitative study of spirituality among persons receiving palliative care. Support Care Cancer 2013; 21:1445–1451. 13. Vermandere AM, Lepeleire J, Van Mechelen W, et al. Outcome measures of spiritual care in palliative home care: a qualitative study. Am J Hosp Palliat Care 2013; 30:437–444. 14. Dobratz MC. ‘‘All my saints are within me’’: expressions of end-of-life spirituality. Palliat Support Care 2013; 11:191–198. 15. Shields M, Kestenbaum A, Dunn LB. Spiritual AIM and the work of the chaplain: a model for assessing spiritual needs and outcomes in relationship. Palliat Support Care 2014; 10:1–15. 16. Gallup Poll. Graph illustration of results from the 2011 Gallup Poll on religion. 2011 a. http://www.gallup.com/poll/1690/Religion.aspxS. [accessed May 2014] 17. Nadarajah S, Berger AM, Thomas SA. Current status of spirituality in cardiac rehabilitation programs: a review of the literature. J Cardiopulm Rehabil Prev 2013; 33:135–143. 18. Peselow T, Pi S, Lopez E, et al. The impact of spirituality before and after treatment of major depressive disorder. Innov Clin Neurosci 2014; 11:17–23. 19. Thune´-Boyle ICV, Stygall J, Keshtgar MRS, et al. Religious/spiritual coping resources and their relationship with adjustment in patients newly diagnosed with breast cancer in the UK. Psychooncology 2013; 22:646–658. 20. Young WC, Nadarajah SR, Skeath PR, Berger AM. Spirituality in the context of life-threatening illness and life-transforming change. Palliat Support Care 2014. doi:10.1017/S1478951514000340. 21. Renz M, Mao S, Omlin A, Bueche D, et al. Spiritual experiences of transcendence in patients with advanced cancer. Am J Hosp Palliat Care 2013. doi: 10.1177/1049909113512201. 22. Lunder U, Furlan M, Simonic A. Spiritual needs assessments and measurements. Curr Opin Support Palliat Care 2011; 5:273–278. 23. Arnold BL. Mapping hospice patients’ perception and verbal communication of end-of-life needs: an exploratory mixed methods inquiry. BMC Palliat Care 2011; 10:1. 24. Fitchett G, Risk JL. Screening for spiritual struggle. J Pastoral Care Couns 2009; 62:1–12. 25. Handzo G. Spiritual care for palliative patients. Curr Probl Cancer 2011; 35:365–371. 26. Balboni T, Vanderwerker L, Block S, et al. Religiousness and spiritual support among advanced cancer patients and associations with end-of-life treatment preferences and quality of life. J Clin Oncol 2007; 25:550–560. 27. Williams JA, Meltzer D, Arora V, et al. Attention to inpatients’ religious and spiritual concerns: predictors and association with patient satisfaction. J Gen Intern Med 2011; 26:1265–1271. 28. Astrow AB, Wexler A, Texeira K, et al. Is failure to meet spiritual needs associated with cancer patients’ perceptions of quality of care and their satisfaction with care? J Clin Oncol 2007; 25:5753–5757. 29. Balboni TA, Paulk ME, Balboni MJ, et al. Provision of spiritual care to patients with advanced cancer: associations with medical care and quality of life near death. J Clin Oncol 2010; 28:445–452. 30. Alcorn SR, Balboni MJ, Prigerson HG, et al. ‘If God wanted me yesterday, I wouldn’t be here today’: religious and spiritual themes in patients’ experiences of advanced cancer. J Palliat Med 2010; 13:581–588. 31. Ross L, Austin J. Spiritual needs and spiritual support preferences of people with end-stage heart failure and their carers: implications for nurse managers. J Nurs Manag 2013; 1–9; DOI: 10.1111/jonm.12087. 32. Sand L, Olsson M, Strang P. What are motives of family members who take responsibility in palliative care? Mortality 2010; 15:64–80.
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Spirituality and religiosity in supportive and palliative care Delgado-Guay 33. Kim Y, Wellisch DK, Spillers RL, Crammer C. Psychological distress of female cancer caregivers: effects of type of cancer and caregivers’ spirituality. Support Care Cancer 2007; 15:1367–1374. 34. Stajduhar KI, Funk L, Toye C, et al. Part 1. Home-based family caregiving at the end of life: a comprehensive review of published quantitative research. Palliat Med 2010; 24:573–593. 35. Heyland DK, Frank C, Tranmer J, et al. Satisfaction with end-of-life care: a longitudinal study of patients and their family caregivers in the last months of life. J Palliat Care 2009; 25:245–256. 36. Rosenbaum JL, Smith JR, Zollfrank R. Neonatal end-of life spiritual support care. J Perinat Neonatal Nurs 2011; 25:61–69. 37. Smith AK, McCarthy EP, Paulk E, et al. Racial and ethnic differences in advance care planning among patients with cancer: impact of terminal illness acknowledgment, religiousness, and treatment preferences. J Clin Oncol 2008; 26:4131–4413. 38. Piotrowski Lf. Advocating and educating for spiritual screening assessment and referrals to chaplains. Omega 2013; 67:185–192. 39. Otis-Green S, Ferrel B, Bomeman T, et al. Integrating spiritual care within palliative care: an overview of nine demonstration projects. J Palliat Med 2012; 15:154–162. 40. El Nawawi NM, Balboni MJ, Balboni TA. Palliative care and spiritual care: the crucial role of spiritual care in the care of patients with advanced illness. Curr Opin Support Palliat Care 2012; 6:269–274.
41. Balboni MJ, Sullivan A, Enzinger AC, Epstein-Peterson ZD. Nurse and physician barriers to spiritual care provision at the end of life. J Pain Symptom Manage 2014. doi:10.1016/j.jpainsymman.2013.09.020. A multisite study aimed at describing nurses’ and physicians’ desire to provide spiritual care to terminally ill patients and assess potential spiritual care barriers. 42. Nichols SW. Examining the impact of spiritual care in long-term care. Omega 2013; 67:175–184. 43. Phelps AC, Lauderdale KE, Alcorn S, Dillinger J, et al. Addressing spirituality within the care of patients at the end of life: perspectives of patients with advanced cancer, oncologists, and oncology nurses. J Clin Oncol 2012; 30: 2538–2544. 44. Balboni MJ, Babar A, Dillinger J, et al. ‘It depends’: viewpoints of patients, physicians, and nurses on patient-practitioner prayer in the setting of advanced cancer. J Pain Symptom Manag 2011; 41:836–847. 45. Brown O, Elkonin D, Naicker S. The use of religion and spirituality in psychotherapy: enablers and barriers. J Relig Health 2013; 52:1131– 1146. 46. Lyndes KA, Fitchett G, Berlinger N, Cadge W, et al. A Survey of chaplains’ roles in pediatric palliative care: integral members of the team. J Health Care Chaplain 2012; 18:74–93. 47. Cobb M, Dowrick C, Lloyd-Williams M. What can we learn about the spiritual needs of palliative care patients from the research literature? J Pain Symptom Manage 2012; 43:1105–1119.
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Spirituality and religiosity in supportive and palliative care Marvin O. Delgado-Guay
Purpose of review To provide an updated overview about the role of spirituality and religiosity in the way patients with lifethreatening illnesses cope, and the importance of providing a comprehensive spiritual assessment and spiritual care in an interdisciplinary team work setting, such as supportive and palliative care. Recent Findings Spirituality is a lifelong developmental task, lasting until death. Spirituality and religion continue to play an important role across cultures globally. Spirituality is seen as a vital element connected to seeking meaning, purpose, and transcendence in life. Many individuals recognize their life-threatening illness as an opportunity for spiritual growth; therefore, these individuals who have access to spirituality through meaning, purpose, connections with others, or connections with a higher power will have the spiritual resources necessary to adjust to adverse circumstances. It is extremely important to pay attention to patients’ and caregivers’ cultural and spiritual identity and spiritual needs. Summary The interdisciplinary supportive and palliative care model of spiritual care proposes inclusion of the spiritual domain in the overall screening and history-taking process and spiritual care by all members of the team, including a full spiritual assessment by a professional chaplain. Research in this extremely important field needs to continue growing. Keywords palliative care, religion, spirituality, supportive care
INTRODUCTION Spirituality is a dimension of personhood, a part of our being, and religion is a construct of human making, which enables the conceptualization and expression of spirituality [1]. Therefore, religiosity relates to the expression of one’s spirituality through behaviors and practices grounded in a particular religious denomination [1]. Spiritual and religious beliefs can affect the way patients cope with illness-related stress and disease burden [1–3]. Spirituality contributes to health in many people, and it is an important component in the care of patients with life-threatening illnesses [3,4]. Spirituality is a lifelong developmental task, lasting until death. It serves several purposes in different stages of life [5]. National surveys consistently support the idea that religion and spirituality are important to most individuals in the general population. More than 90% of adults express a belief in God, and slightly more than 70% of individuals surveyed identified religion as one of the most important influences in their lives [1,6]. www.supportiveandpalliativecare.com
A key goal of supportive or palliative care services is to alleviate sufferings of patient and caregivers. Suffering is a biopsychosocial, multidimensional construct that includes physical, emotional, as well as spiritual pain or struggles. The presence of spiritual pain can be an important component not only of patients’ distress with life-threatening illness with chronic or acute pain and other physical and psychological symptoms [7], but also a significant source of suffering for caregivers [8]. Spiritual care is an important part of healthcare, especially when facing the crisis of advanced illnesses
Department of Palliative Care and Rehabilitation Medicine, Unit 1414, University of Texas MD Anderson Cancer Center, Houston, Texas, USA Correspondence to Marvin Omar Delgado-Guay, MD, Department of Palliative Care and Rehabilitation Medicine, Unit 1414, University of Texas MD Anderson Cancer Center, 1515 Holcombe Blvd., Houston, TX 77030, USA. Tel: +1 713 745 8190; fax: +1 713 792 6092; e-mail: [email protected] Curr Opin Support Palliat Care 2014, 8:308–313 DOI:10.1097/SPC.0000000000000079 Volume 8 Number 3 September 2014
Copyright © Lippincott Williams & Wilkins. Unauthorized reproduction of this article is prohibited.
Spirituality and religiosity in supportive and palliative care Delgado-Guay
KEY POINTS Many patients report spiritual concerns and needs arising within illness. Many patients desire spiritual care from medical providers, but its provision remains infrequent. Religion and spirituality play an important role in coping with disease-related symptoms, improves quality of life, and impacts medical decision making near death. Existential and spiritual suffering is among the most debilitating conditions in end-of-life care, and yet it lacks a clear definition, concept, effective assessment, and measurement. The process of spiritual assessment of patients with lifethreatening illnesses and their families/caregivers starts with a spiritual screening/history that can lead to an in-depth complete spiritual assessment of their spiritual needs, struggles and spiritual interventions. Family caregivers may experience typical patterns of spiritual well being and distress in parallel with patients. Research is needed to better understand the role of medical professionals in spiritual care provision. Spiritual care is part of the all members of the supportive and palliative care team. Multidisciplinary team approach to provide a touch of hope, and a touch of love, to decrease suffering and to improve the quality of life of patients with lifethreatening illness and families in distress.
and at the end of life. Spiritual care is an essential domain of quality supportive and palliative care [3,9]. Unfortunately, medical systems often fail to sufficiently address and provide for the spiritual needs of patient’s facing advanced illness [10]. When spiritual needs and spiritual distress are not addressed, patients are at risk of depression and reduced sense of spiritual meaning, peace, and dignity [11]. The purpose of this review is to provide an updated overview about the role of spirituality and religiosity in the way patients with life-threatening illnesses cope, and the importance to provide a comprehensive spiritual assessment and spiritual care in an interdisciplinary team work setting, such as supportive and palliative care.
SPIRITUALITY AND RELIGIOSITY IN THE CONTINUUM OF CARING FOR PATIENTS LIVING WITH LIFE-THREATENING ILLNESSES Spirituality and religion continue to play an important role across cultures globally. Spirituality is
experienced broadly as an important dimension of how patients live with advanced and terminal illness [12]. Factors that help and give strength during the illness process include strong spiritual components of family relationships, the meaning of God or a higher being, and spiritual practices [12]. It is always important to remember that patients facing life-threatening illness and nearing the end of life have the need to be taken seriously, independently of what their spirituality consists of [13]. Spirituality is seen as vital element connected to seeking meaning, purpose, and transcendence in life [3,12,14] and direction to find self-worth and to belong to community, and to love and be loved, often facilitated through seeking reconciliation when relationships are broken [15]. This is particularly the case in the USA where 93% of the population holds belief in God or a higher power [16]. In a cohort of advanced cancer patients evaluated in the palliative care outpatient clinic, almost all of them considered themselves spiritual (98%) and religious (98%). The patients also reported spirituality and/or religiosity help them in coping with their illness (99%), as a source of strength (100%), and have a positive impact on their physical (69%) and emotional (84%) symptoms [7]. Many individuals recognize their life-threatening illness as an opportunity for spiritual growth. Therefore, these individuals who have access to spirituality through meaning, purpose, connections with others, or connections with a higher power will have the spiritual resources necessary to adjust to adverse circumstances [17]. The greater level of spirituality through internal spiritual practices and experiences is associated with less severe depression. In this matter, spirituality provides a system of meaning that emphasizes hope, adaptation, insight, and the belief that circumstances are not senseless or meaningless [18]. Thune´-Boyle et al. [19] reported that using religious or spiritual resources in the coping process during the early stages of breast cancer may play an important role in the adjustment process in patients with breast cancer. It is extremely important to recognize, independently of the stage of the illness, that patients may benefit from having their spiritual needs addressed, as experiencing some form of religious or spiritual struggle may serve as a barrier to illness adjustment. In a semistructured qualitative interview of a sample of cardiac and cancer survivors, Young et al. [20] found that these individuals often accessed spirituality by enhancing connections in their own lives: with a higher power, people, their work, or themselves. Having these connections helped the individuals to have greater meaning and purpose in
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their lives, and to adjust to their life-threatening illnesses. Renz et al. [21] documented advanced cancer patients’ spontaneous expressions of spiritual experiences during hospitalization and found that 135 out of 251 patients communicated spiritual experiences of transcendence. These experiences were associated with healing connections with profound and powerful reactions: physically (less pain, sometimes less dyspnea), psychologically (less anxiety, better coping with illness, life, and death), and spiritually (altered spiritual identity). Facing a life-threatening illness and the end of life can be a spiritual crisis, and having a sense of spirituality has been identified as an important coping resource. The assessment of spiritual or religious needs can identify the specific services and assistance which the patient most desires and is a first step in designing needs-tailored interventions [22].
RECOGNIZING SPIRITUAL OR RELIGIOUS NEEDS OF PATIENTS LIVING WITH LIFETHREATENING ILLNESS AND THEIR CAREGIVERS It is always important to consider that the words which patients use to communicate the perceptions of their end-of-life needs reveal how important it is to assess the dynamics of patient–clinician communication [22,23]. At the same time, clinicians caring for persons with life-threatening illness need to recognize that persons who have spiritual distress and thus need spiritual care are the least likely to ask for it [24]. Although the importance of religion and spirituality in coping with cancer and other diseases is high for many people and well documented, healthcare providers and medical institutions often do not do a good job of attending to this dimension of the patient’s care [25]. It has been reported that over 70% of cancer patients said that their spiritual needs were minimally or not at all supported by the medical system [26]. Most importantly, the attention to religious or spiritual issues has been shown to have a significant influence on several important indicators of quality care. Several studies have documented the positive relationship between meeting spiritual needs and patient satisfaction [27,28]. Several other findings suggest that attention to spiritual needs improves quality of life and reduces use of aggressive care at the end of life [29]. In a study by Delgado-Guay et al. [7], among a palliative care population, 44% of advanced patients reported experiencing ‘spiritual pain.’ Patients with spiritual pain had significantly lower self-perceived 310
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religiosity and spiritual quality of life. Likewise, in a study by Alcorn et al. [30] of advanced cancer patients receiving palliative radiation therapy, 85% identified one or more spiritual issues with a median of four issues per patient among 14 spiritual issues assessed. The most common spiritual issues reported were as follows: ‘seeking a closer connection with God or one’s faith,’ 54%; ‘seeking forgiveness (of oneself or others),’ 47%; and ‘feeling abandoned by God,’ 28%. Patients with life-threatening illness struggle with spiritual or existential concerns alongside the physical and emotional challenges of their illness. It also described that as an advanced heart failure patient’s condition deteriorates, the emphasis shifts from ‘fighting’ the illness to making the most of the time left. These spiritual concerns could be addressed by having someone to talk to, supporting caregivers, and staff showing sensitivity or taking care to foster hope [31]. It is also important to notice that caregivers of patients of advanced illnesses have spiritual needs or concerns and suffering. Persons who take responsibility for caregiving are engaging in ‘meaning-making’ activities by expressing important values such as hope, dignity, togetherness, involvement, and continuity, and demonstrating their desire to strengthen family ties and deepen personal growth [32]. People who are more religious feel more positively about their role as caregivers, get along better with those for whom they provide care, and express less caregiver distress [33]. Faith communities play an important role in fostering belief systems of responsibility and compassion that are likely to help caregivers doing the emotionally difficult work of caring for others [32]. Caregivers’ quality of life might decrease in direct proportion to declines in the patient’s functioning and health and increases in the patient’s need for care and the intensity of his or her symptoms and distress [34]. Although caregivers have reported that their satisfaction in the spirituality and meaning domains increased over time, they might be less satisfied during the bereavement period [35], most likely because their spiritual needs have not been optimally addressed during the dying phase [36]. A study by Delgado-Guay et al. [8] involving 43 caregivers of patients with advanced cancer in an outpatient palliative care clinic reported that all the caregivers considered that spirituality and religiosity helped them to cope with their loved one’s illness, and many of them reported that spirituality and religiosity had a positive impact on their loved one’s physical and emotional symptoms. Interestingly, Volume 8 Number 3 September 2014
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also it was reported the presence of spiritual pain in 58% of these caregivers. Caregivers with spiritual pain had higher levels of anxiety, depression, denial, more behavioral disengagement, more dysfunctional coping strategies, and worse quality of life than those who did not have spiritual pain. Communication with patients and caregivers about spiritual issues ranges from a preliminary screening to identifying potential spiritual issues to a spiritual history to a spiritual assessment and, in some instances, if appropriate, spiritual interventions to decrease spiritual pain or suffering of patients and caregivers [8]. It is extremely important to pay attention to the patients’ and caregivers’ cultural [37] and spiritual identity and spiritual needs upon admission and throughout the course of their illness [38]. The use of a formalized screening tool and the increased awareness and sensitivity of the health care providers can assist patients and caregivers in naming their spiritual needs and better provide spiritual care through referrals to a board certified chaplain or other spiritual counselor [38].
HEALING THROUGH SPIRITUAL CARE INTEGRATED INTO THE SUPPORTIVE AND PALLIATIVE CARE SETTING The process of good spiritual care involves all healthcare professionals and mimics the process for other domains of care. Studies have consistently indicated the desire of patients with serious illness and end-oflife concerns to have spirituality included in their care. Although there is emerging scholarly bodies of literature to support the inclusion of spiritual care as part of a biopsychosocial-spiritual approach to healthcare, palliative care programs are working for strategies for effecting institutional change and resources to assist in improving the delivery of spiritual care [39,40,41 ]. Spiritual care is an essential domain of quality palliative care [3,9]. Spiritual care (both religious and nonreligious) is a vital factor in well being and quality of life at the end of life, and the multidisciplinary supportive and palliative care is needed in acute and long-term care settings [41 ,42] to address spiritual and psychosocial needs. One of the issues which often arise with regard to spiritual care is that even when teams accept the necessity of participation in spiritual screening and history taking, they are uncomfortable taking on any role in the delivery of spiritual care itself. In a multi-institution study involving patients with advanced cancer, physicians, and nurses, it was found that the more than 70% of them believed that routine spiritual care would have a positive impact &
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on patients. Unfortunately, only 25% of patients had previously received spiritual care, and physicians held more negative perceptions of spiritual care than patients [43]. Practitioners who are personally uncomfortable with religious or spirituality should respectfully identify if a patient has spiritual needs and then refer the patient to chaplaincy or clergy. This approach, however, might best be understood as what is minimally appropriate in spiritual care rather than its gold standard [40,44]. It will be important to continue developing interdisciplinary training programs through a comprehensive curriculum for medical schools, schools of nursing and social work, allied health, and clinical pastoral programs. The interdisciplinary palliative care model of spiritual care proposes inclusion of the spiritual domain in the overall screening and history-taking process, as well as a full spiritual assessment by the professional chaplain as needed. Again, the generalist or specialist model presumes the professional chaplain as the specialist [25]. The plan should include the spiritual care interventions for all members of the healthcare team. It is extremely important to emphasize that the provision of spiritual care is shared by all members of the team in the same way that documentation of spiritual need is shared. It is important to remember that taking time with a patient and being empathetic and compassionate is healing, and it is spiritual care. Any staff member can take the time to listen to a patient’s story, to listen to a patient’s angst, and to be a compassionate presence with that patient. Many times this is all that the patient asks. The patient is not looking for answers. What is spoken as a spiritual question is most often not a question at all, but an expression of spiritual pain. Spiritual interventions can be understood as therapeutic strategies that incorporate a spiritual or religious dimension as a central component of the intervention. This practice advocates for a holistic view of health. Spirituality is interwoven in the therapeutic process and cannot be separated from it [45]. Religious or spiritual activities can be practiced through the continuum of care to help support persons with life-threatening illness. Religious interventions are more structured, cognitive, denominational, external, ritualistic, and public, whereas spiritual interventions are more crosscultural, affective, transcendent, and experiential. Interventions should be agreed with the patient, and tailored to their worldly perspectives to help them during an illness or crisis [45]. Chaplains can help patients and families find meaning in their hospitalization and illness
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experiences. At the same time, to provide traditional rituals including prayers, blessings, baptisms, funerals, and periodic memorial services at the hospital for families of patients who have died. When appropriate, another service provided by the chaplain is to serve as a liaison to the patient and family’s faith community [46].
CONCLUSION In the supportive and palliative care setting, we need to be aware of the very strong spiritual and religious needs of the patients with life-threatening illness and their caregivers and also of the varieties of ways in which they can access this type of support either by providing them access to chaplains within the supportive or palliative care team or by facilitating and encouraging patient access to religious leaders or traditional healers. Maintaining communication and the friendly welcoming attitude toward these individuals will further personalize care for patients and caregivers in this setting, and it is usually associated with increased satisfaction of care from the patient and caregivers. It is with priority to continue growing in the development of a biopsychospiritual personalized approach caring patients with life-threatening illness and their caregivers, training of healthcare professionals in assessing and integrating spirituality into healthcare, and the active participation of trained chaplains to be involved in the care of patients with complex spiritual suffering. Another priority is to continue supporting research in this area in different settings as research to date are limited by reductive representations of spirituality and religiosity, and the conduct of research by health professionals within healthcare communities has been demarcated from disciplines and interpretive traditions of spirituality or religion [47]. Acknowledgements None. Conflicts of interest The author has declared no conflicts of interest.
REFERENCES AND RECOMMENDED READING Papers of particular interest, published within the annual period of review, have been highlighted as: & of special interest && of outstanding interest 1. National Cancer Institute. Spirituality in cancer care. September 2012. http:// www.nci.nih.gov/cancertopics/pdq/supportivecare/spirituality. [Accessed March 2014]
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2. Peteet JR, Balboni MJ. Spirituality and religion in oncology. CA Cancer J Clin 2013; 63:280–289. 3. Puchalski C, Ferrel B, Virani R, et al. Improving the quality of spiritual care as a dimension of palliative care: the report of the consensus conference. J Palliat Med 2009; 10:885–904. 4. Puchalski CM. Spirituality in the cancer trajectory. Ann Oncol 2012; 23 (suppl 3):49–55. 5. Neuman ME. Addressing children’s beliefs through Fowler’s stages of faith. J Pediatric Nurs 2011; 26:44–50. 6. Gallup G. The religiosity cycle. Gallup Tuesday briefing [on-line] 2 June 2002. Available at http://www.gallup.com/poll/6124/Religiosity-Cycle.aspx. [Accessed May 2014] 7. Delgado-Guay MO, Hui D, Parsons HA, et al. Spirituality, religiosity, and spiritual pain in advanced cancer patients. J Pain Symptom Manage 2011; 41:986–994. 8. Delgado-Guay MO, Parsons HA, Hui D, et al. Spirituality, religiosity, and spiritual pain among caregivers of patients with advanced cancer. Am J Hosp Palliat Care 2013; 30:455–461. 9. National Consensus Project: the development of clinical practice guidelines for quality palliative care. http://www.nationalconsensusproject.org/. April 24, 2013. Accessed May 2014. 10. El Nawawia NM, Balboni MJ, Balboni TA. Palliative care and spiritual care: the crucial role of spiritual care in the care of patients with advanced illness. Curr Opin Support Palliat Care 2012; 6:269–274. 11. Pearce MJ, Coan AD, Herndon JE, et al. Unmet spiritual care needs impact emotional and spiritual well being in advanced cancer patients. Support Care Cancer 2012; 20:2269–2276. 12. Asgeirsdottir GH, Sigurbjo¨rnsson E, Traustadottir R, et al. , et al. ‘‘To cherish each day as it comes’’: a qualitative study of spirituality among persons receiving palliative care. Support Care Cancer 2013; 21:1445–1451. 13. Vermandere AM, Lepeleire J, Van Mechelen W, et al. Outcome measures of spiritual care in palliative home care: a qualitative study. Am J Hosp Palliat Care 2013; 30:437–444. 14. Dobratz MC. ‘‘All my saints are within me’’: expressions of end-of-life spirituality. Palliat Support Care 2013; 11:191–198. 15. Shields M, Kestenbaum A, Dunn LB. Spiritual AIM and the work of the chaplain: a model for assessing spiritual needs and outcomes in relationship. Palliat Support Care 2014; 10:1–15. 16. Gallup Poll. Graph illustration of results from the 2011 Gallup Poll on religion. 2011 a. http://www.gallup.com/poll/1690/Religion.aspxS. [accessed May 2014] 17. Nadarajah S, Berger AM, Thomas SA. Current status of spirituality in cardiac rehabilitation programs: a review of the literature. J Cardiopulm Rehabil Prev 2013; 33:135–143. 18. Peselow T, Pi S, Lopez E, et al. The impact of spirituality before and after treatment of major depressive disorder. Innov Clin Neurosci 2014; 11:17–23. 19. Thune´-Boyle ICV, Stygall J, Keshtgar MRS, et al. Religious/spiritual coping resources and their relationship with adjustment in patients newly diagnosed with breast cancer in the UK. Psychooncology 2013; 22:646–658. 20. Young WC, Nadarajah SR, Skeath PR, Berger AM. Spirituality in the context of life-threatening illness and life-transforming change. Palliat Support Care 2014. doi:10.1017/S1478951514000340. 21. Renz M, Mao S, Omlin A, Bueche D, et al. Spiritual experiences of transcendence in patients with advanced cancer. Am J Hosp Palliat Care 2013. doi: 10.1177/1049909113512201. 22. Lunder U, Furlan M, Simonic A. Spiritual needs assessments and measurements. Curr Opin Support Palliat Care 2011; 5:273–278. 23. Arnold BL. Mapping hospice patients’ perception and verbal communication of end-of-life needs: an exploratory mixed methods inquiry. BMC Palliat Care 2011; 10:1. 24. Fitchett G, Risk JL. Screening for spiritual struggle. J Pastoral Care Couns 2009; 62:1–12. 25. Handzo G. Spiritual care for palliative patients. Curr Probl Cancer 2011; 35:365–371. 26. Balboni T, Vanderwerker L, Block S, et al. Religiousness and spiritual support among advanced cancer patients and associations with end-of-life treatment preferences and quality of life. J Clin Oncol 2007; 25:550–560. 27. Williams JA, Meltzer D, Arora V, et al. Attention to inpatients’ religious and spiritual concerns: predictors and association with patient satisfaction. J Gen Intern Med 2011; 26:1265–1271. 28. Astrow AB, Wexler A, Texeira K, et al. Is failure to meet spiritual needs associated with cancer patients’ perceptions of quality of care and their satisfaction with care? J Clin Oncol 2007; 25:5753–5757. 29. Balboni TA, Paulk ME, Balboni MJ, et al. Provision of spiritual care to patients with advanced cancer: associations with medical care and quality of life near death. J Clin Oncol 2010; 28:445–452. 30. Alcorn SR, Balboni MJ, Prigerson HG, et al. ‘If God wanted me yesterday, I wouldn’t be here today’: religious and spiritual themes in patients’ experiences of advanced cancer. J Palliat Med 2010; 13:581–588. 31. Ross L, Austin J. Spiritual needs and spiritual support preferences of people with end-stage heart failure and their carers: implications for nurse managers. J Nurs Manag 2013; 1–9; DOI: 10.1111/jonm.12087. 32. Sand L, Olsson M, Strang P. What are motives of family members who take responsibility in palliative care? Mortality 2010; 15:64–80.
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Spirituality and religiosity in supportive and palliative care Delgado-Guay 33. Kim Y, Wellisch DK, Spillers RL, Crammer C. Psychological distress of female cancer caregivers: effects of type of cancer and caregivers’ spirituality. Support Care Cancer 2007; 15:1367–1374. 34. Stajduhar KI, Funk L, Toye C, et al. Part 1. Home-based family caregiving at the end of life: a comprehensive review of published quantitative research. Palliat Med 2010; 24:573–593. 35. Heyland DK, Frank C, Tranmer J, et al. Satisfaction with end-of-life care: a longitudinal study of patients and their family caregivers in the last months of life. J Palliat Care 2009; 25:245–256. 36. Rosenbaum JL, Smith JR, Zollfrank R. Neonatal end-of life spiritual support care. J Perinat Neonatal Nurs 2011; 25:61–69. 37. Smith AK, McCarthy EP, Paulk E, et al. Racial and ethnic differences in advance care planning among patients with cancer: impact of terminal illness acknowledgment, religiousness, and treatment preferences. J Clin Oncol 2008; 26:4131–4413. 38. Piotrowski Lf. Advocating and educating for spiritual screening assessment and referrals to chaplains. Omega 2013; 67:185–192. 39. Otis-Green S, Ferrel B, Bomeman T, et al. Integrating spiritual care within palliative care: an overview of nine demonstration projects. J Palliat Med 2012; 15:154–162. 40. El Nawawi NM, Balboni MJ, Balboni TA. Palliative care and spiritual care: the crucial role of spiritual care in the care of patients with advanced illness. Curr Opin Support Palliat Care 2012; 6:269–274.
41. Balboni MJ, Sullivan A, Enzinger AC, Epstein-Peterson ZD. Nurse and physician barriers to spiritual care provision at the end of life. J Pain Symptom Manage 2014. doi:10.1016/j.jpainsymman.2013.09.020. A multisite study aimed at describing nurses’ and physicians’ desire to provide spiritual care to terminally ill patients and assess potential spiritual care barriers. 42. Nichols SW. Examining the impact of spiritual care in long-term care. Omega 2013; 67:175–184. 43. Phelps AC, Lauderdale KE, Alcorn S, Dillinger J, et al. Addressing spirituality within the care of patients at the end of life: perspectives of patients with advanced cancer, oncologists, and oncology nurses. J Clin Oncol 2012; 30: 2538–2544. 44. Balboni MJ, Babar A, Dillinger J, et al. ‘It depends’: viewpoints of patients, physicians, and nurses on patient-practitioner prayer in the setting of advanced cancer. J Pain Symptom Manag 2011; 41:836–847. 45. Brown O, Elkonin D, Naicker S. The use of religion and spirituality in psychotherapy: enablers and barriers. J Relig Health 2013; 52:1131– 1146. 46. Lyndes KA, Fitchett G, Berlinger N, Cadge W, et al. A Survey of chaplains’ roles in pediatric palliative care: integral members of the team. J Health Care Chaplain 2012; 18:74–93. 47. Cobb M, Dowrick C, Lloyd-Williams M. What can we learn about the spiritual needs of palliative care patients from the research literature? J Pain Symptom Manage 2012; 43:1105–1119.
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