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Spirituality and religiosity in supportive and palliative care

Delgado-Guay, Marvin O.

Current Opinion in Supportive and Palliative Care: September 2014 - Volume 8 - Issue 3 - p 308–313
doi: 10.1097/SPC.0000000000000079
GENERAL SUPPORTIVE AND PALLIATIVE CARE: Edited by Eduardo Bruera

Purpose of review To provide an updated overview about the role of spirituality and religiosity in the way patients with life-threatening 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.

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: Marvin.Delgado@mdanderson.org

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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].

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 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.

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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].

Thuné-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 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].

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RECOGNIZING SPIRITUAL OR RELIGIOUS NEEDS OF PATIENTS LIVING WITH LIFE-THREATENING 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 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, 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].

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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-of-life 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 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 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].

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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].

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Acknowledgements

None.

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Conflicts of interest

The author has declared no conflicts of interest.

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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
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Keywords:

palliative care; religion; spirituality; supportive care

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