National Cancer Institute
Last Modified: September 20, 2012
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 Yet even widely held beliefs, such as survival of the soul after death or a belief in miracles, vary substantially by gender, education, and ethnicity. 2
Research indicates that both patients and family caregivers 3 4 commonly rely on spirituality and religion to help them deal with serious physical illnesses, expressing a desire to have specific spiritual and religious needs and concerns acknowledged or addressed by medical staff; these needs, although widespread, may take different forms between and within cultural and religious traditions. 5 6 7
A survey of hospital inpatients found that 77% of patients reported that physicians should take patients' spiritual needs into consideration, and 37% wanted physicians to address religious beliefs more frequently. 8 A large survey of cancer outpatients in New York City found that a slight majority felt it was appropriate for a physician to inquire about their religious beliefs and spiritual needs, although only 1% reported that this had occurred. Those who reported that spiritual needs were not being met gave lower ratings to quality of care (P < .01) and reported lower satisfaction with care (P < .01). 7 A pilot study of 14 African American men with a history of prostate cancer found that most had discussed spirituality and religious beliefs with their physicians; they expressed a desire for their doctors and clergy to be in contact with each other. 9
Sixty-one percent of 57 inpatients with advanced cancer receiving end-of-life care in a hospital supported by the Catholic archdiocese reported spiritual distress when interviewed by hospital chaplains. Intensity of spiritual distress correlated with self-reports of depression but not with physical pain or with perceived severity of illness. 10 Another study 11 of advanced cancer patients (N = 230) in New England and Texas assessed their spiritual needs. Almost half (47%) reported that their spiritual needs were not being met by a religious community, and 72% reported that these needs were not supported by the medical system. When such support existed, it was positively related to improved quality of life. Furthermore, having spiritual issues addressed by the medical care team had more impact on increasing the use of hospice and decreasing aggressive end-of-life measures than did pastoral counseling. 12
Paying attention to the religious or spiritual beliefs of seriously ill patients has a long tradition within inpatient medical environments. Addressing such issues has been viewed as the domain of hospital chaplains or a patient's own religious leader. In this context, systematic assessment has usually been limited to identifying a patient's religious preference; responsibility for management of apparent spiritual distress has been focused on referring patients to the chaplain service. 13 14 15 Although health care providers may address such concerns themselves, they are generally very ambivalent about doing so, 16 and there has been relatively little systematic investigation addressing the physician's role. These issues, however, are being increasingly addressed in medical training. 17 Acknowledging the role of all health care professionals in spirituality, a multidisciplinary group from one cancer center developed a four-stage model that allows health care professionals to deliver spiritual care consistent with their knowledge, skills, and actions at one of four skill levels. 18
Interest in and recognition of the function of religious and spiritual coping in adjustment to serious illness, including cancer, has been growing. 19 20 21 22 23 New ways to assess and address religious and spiritual concerns as part of overall quality of life are being developed and tested. Limited data support the possibility that spiritual coping is one of the most powerful means by which patients draw on their own resources to deal with a serious illness such as cancer; however, patients and their family-member caregivers may be reluctant to raise religious and spiritual concerns with their professional health care providers. 24 25 26 Increased spiritual well-being in a seriously ill population may be linked with lower anxiety about death, 27 but greater religious involvement may also be linked to an increased likelihood of desire for extreme measures at the end of life. 28 Given the importance of religion and spirituality to patients, integrating systematic assessment of such needs into medical care, including outpatient care, is crucial. The development of better assessment tools will make it easier to discern which aspects of religious and spiritual coping may be important in a particular patient's adjustment to illness.
Of equal importance is the consideration of how and when to address religion and spirituality with patients and the best ways to do so in different medical environments. 29 30 31 Although addressing spiritual concerns is often considered an end-of-life issue, such concerns may arise at any time after diagnosis. 24 Acknowledging the importance of these concerns and addressing them, even briefly, at diagnosis may facilitate better adjustment throughout the course of treatment and create a context for richer dialogue later in the illness. One study of 118 patients seen in follow-up by one of four oncologists suggests that a semistructured inquiry into spiritual concerns related to coping with cancer is well accepted by patients and oncologists and is associated with positive perceptions of care and well-being. 32
In this summary, unless otherwise stated, evidence and practice issues as they relate to adults are discussed. The evidence and application to practice related to children may differ significantly from information related to adults. When specific information about the care of children is available, it is summarized under its own heading.
Specific religious beliefs and practices should be distinguished from the idea of a universal capacity for spiritual and religious experiences. Although this distinction may not be salient or important on a personal basis, it is important conceptually for understanding various aspects of evaluation and the role of different beliefs, practices, and experiences in coping with cancer.
The most useful general distinction to make in this context is between religion and spirituality. There is no general agreement on definitions of either term, but there is general agreement on the usefulness of this distinction. A number of reviews address matters of definition. 1 2 3 Religion can be viewed as a specific set of beliefs and practices associated with a recognized religion or denomination. Spirituality is generally recognized as encompassing experiential aspects, whether related to engaging in religious practices or to acknowledging a general sense of peace and connectedness. The concept of spirituality is found in all cultures and is often considered to encompass a search for ultimate meaning through religion or other paths. 4 Within health care, concerns about spiritual or religious well-being have sometimes been viewed as an aspect of complementary and alternative medicine (CAM), but this perception may be more characteristic of providers than of patients. In one study, 5 virtually no patients but about 20% of providers said that CAM services were sought to assist with spiritual or religious issues. Religion is highly culturally determined; spirituality is considered a universal human capacity, usuallybut not necessarilyassociated with and expressed in religious practice. Most individuals consider themselves both spiritual and religious; some may consider themselves religious but not spiritual. Others, including some atheists (people who do not believe in the existence of God) or agnostics (people who believe that God cannot be shown to exist), may consider themselves spiritual but not religious. In a sample of 369 representative cancer outpatients in New York City (33% minority), while only 6% identified themselves as agnostic or atheist, only 29% attended religious services weekly; 66% represented themselves as spiritual but not religious. 6
One effort to characterize individuals by types of spiritual and religious experience 7 identified the following three groups, using cluster analytic techniques:
Individuals in the third group were far more distressed about their illness and were experiencing worse adjustment. There is as yet no consensus on the number or types of underlying dimensions of spirituality or religious engagement.
From the prospective of both the research and clinical literature on the relationships between religion, spirituality, and health, it is important to consider how these concepts are defined and used by investigators and authors. Much of the epidemiological literature that has indicated a relationship between religion and health has been based on definitions of religious involvement such as membership in a religious group or frequency of church attendance. Somewhat more complex is assessing specific beliefs or religious practices such as belief in God, frequency of prayer, or reading religious material. Individuals may engage in such practices or believe in God without necessarily attending church services. Terminology also carries certain connotations; the term religiosity, for example, has a history of implying fervor and perhaps undue investment in particular religious practices or beliefs. Religiousness may be a more neutral way to refer to the dimension of religious practice.
Spirituality and spiritual well-being are more challenging to define. Some definitions limit spirituality to mean profound mystical experiences; however, in considerations of effects on health and psychological well-being, the more helpful definitions focus on accessible feelings, such as a sense of inner peace, existential meaning, and purpose in life, or awe when walking in nature. For the purposes of this discussion, it is assumed that there is a continuum of meaningful spiritual experiences, from the common and accessible to the extraordinary and transformative. Both type and intensity of experience may vary. Other aspects of spirituality that have been identified by those working with medical patients include a sense of meaning and peace, a sense of faith, and a sense of connectedness to others or to God. Low levels of these experiences may be associated with poorer coping (refer to the Relation of Religion and Spirituality to Adjustment, Quality of Life, and Health Indices section). 3
The definition of acute spiritual distress must be considered separately. Spiritual distress may result from the belief that cancer reflects punishment by God or may accompany a preoccupation with the question Why me? A cancer patient may also suffer a loss of faith. 8 Although many individuals may have such thoughts at some time following diagnosis, only a few individuals become obsessed with these thoughts or score high on a general measure of religious and spiritual distress (such as the Negative subscale of the Religious Coping Scale [the R-CopeNegative]). 8 High levels of spiritual distress may contribute to poorer health and psychosocial outcomes. 9 10 The tools for measuring these dimensions are described in the Screening and Assessment of Spiritual Concerns section.
Religion and spirituality have been shown to be significantly associated with measures of adjustment and with the management of symptoms in cancer patients. Religious and spiritual coping have been associated with lower levels of patient discomfort as well as reduced hostility, anxiety, and social isolation in cancer patients 1 2 3 4 and in family caregivers. 5 Specific characteristics of strong religious beliefs, including hope, optimism, freedom from regret, and life satisfaction, have also been associated with improved adjustment in individuals diagnosed with cancer. 6 7
Type of religious coping may influence quality of life. In a multi-institutional cross-sectional study of 170 patients with advanced cancer, more use of positive religious coping methods (such as benevolent religious appraisals) was associated with better overall quality of life and higher scores on the existential and support domains of the McGill Quality of Life Questionnaire. In contrast, more use of negative religious coping methods (such as anger at God) was related to poorer overall quality of life and lower scores on the existential and psychological domains. 8 9 A study of 95 cancer patients diagnosed within the past 5 years found that spirituality was associated with less distress and better quality of life regardless of perceived life threat, with existential well-being but not religious well-being as the major contributor. 10
Spiritual well-being, particularly a sense of meaning and peace, 11 is significantly associated with an ability of cancer patients to continue to enjoy life despite high levels of pain or fatigue. Spiritual well-being and depression are inversely related. 12 13 Higher levels of a sense of inner meaning and peace have also been associated with lower levels of depression, whereas measures of religiousness were unrelated to depression. 14
This relationship has been specifically demonstrated in the cancer setting. In a cross-sectional survey of 85 hospice patients with cancer, there was a negative correlation between anxiety and depression (as measured by the Hospital Anxiety and Depression Scale) and overall spiritual well-being (as measured by the Spiritual Well-Being Scale) (P < .0001). There was also a negative correlation between the existential well-being scores and the anxiety and depression scores but not with the religious well-being score (P < .001). 15 These patterns were also found in a large study of indigent prostate cancer survivors; the patterns were consistent across ethnicity and metastatic status. 16
In a large (N = 418) study of breast cancer patients, a higher level of meaning and peace was associated with a decline in depression over 12 months, whereas higher religiousness predicted an increase in depression, particularly if meaning/peace was lower. 17[Level of evidence: II] A second study with mixed gender/mixed cancer survivors (N = 165) found similar patterns. In both studies, high levels of religiousness were linked to increases in perceived cancer-related growth. 17[Level of evidence: II] In a convenience sample, 222 low-income men with prostate cancer were surveyed about spirituality and health-related quality of life. Low scores in spirituality, as measured by the peace/meaning and faith subscale of the Functional Assessment of Chronic Illness TherapySpiritual Well-Being (FACIT-Sp), were associated with significantly worse physical and mental health than were high scores in spirituality. 18
A large national survey of 361 paired U.S. survivors and caregivers (caregivers included spouses and adult children) found that for both survivors and caregivers, the peace factor of the FACIT-Sp was strongly related to mental health but negligibly or not at all related to physical well-being. The faith factor (religiousness) was unrelated to physical or mental well-being. Fifty-two percent of the survivors in this survey were women. 19 These findings support the value of the FACIT-Sp in separating people's religious involvement from their sense of spiritual well-being and that it is this sense of spiritual well-being that seems to be most related to psychological adjustment.
Another large national survey study of female family caregivers (N = 252; 89% white) identified that higher levels of spirituality, as measured by the FACIT-Sp, were associated with much less psychological distress (measured by the Pearlin Stress Scale). Participants with higher levels of spirituality actually had improved well-being even as caregiving stress increased, while those with lower levels of spirituality showed the opposite pattern, suggesting a strong stress-buffering effect of spiritual well-being. This finding reinforces the need to identify low spiritual well-being when assessing the coping capacity of family caregivers as well as patients. 5
One author 20 found that cancer survivors who had drawn on spiritual resources reported substantial personal growth as a function of dealing with the trauma of cancer. This was also found in a survey study of 100 well-educated, mostly married/partnered white women with early-stage breast cancer, recruited for the study from an Internet Web site, in which increasing levels of spiritual struggle were related to poorer emotional adjustment, though not to other aspects of cancer-related quality of life. 21 Using path analytic techniques, a study of women with breast cancer found that at both prediagnosis and 6 months postsurgery, holding negative images of God was the strongest predictor of emotional distress and lower social well-being. 22 However, longitudinal analyses failed to find sustained effects for baseline positive or negative attitudes toward God at either 6 or 12 months. One possible explanation for these findings is that such attitudes are somewhat unstable during a period of uncertainty (e.g., at prediagnosis). 22
Engaging in prayer is often cited as an adaptive tool, 23 but qualitative research 24 found that for about one third of cancer patients interviewed, concerns about how to pray effectively or the questions raised about the effectiveness of prayer also caused inner conflict and mild distress. In a study of reported use of spiritual healing and prayer by a sample of 123 patients hospitalized on a palliative care unit, 26.8% reported having used spiritual healing and prayer for curative purposes, 35% for improving survival, and 36.6% for improving symptoms (note: these percentages overlap). Higher levels of faith on the FACIT-Sp were associated with greater use of complementary and alternative medicine techniques in general and with interest in future use, whereas the level of meaning/peace was not. The study also looked at the general use of complementary therapies. 25 A useful discussion of how prayer is used by cancer patients and how clinicians might conceptualize prayer has been published. 26
Ethnicity and spirituality were investigated in a qualitative study of 161 breast cancer survivors. In individual interviews, most participants (83%) spoke about some aspect of their spirituality. Seven themes were identified: God as a Comforting Presence, Questioning Faith, Anger at God, Spiritual Transformation of Self and Attitude Towards Others/Recognition of Own Mortality, Deepening of Faith, Acceptance, and Prayer by Self. A higher percentage of African Americans, Latinas, and persons identified as Christians were more likely to feel comforted by God than were other groups. 27
Positive religious involvement and spirituality appear to be associated with better health and longer life expectancy, even after controlling for other variables such as health behaviors and social support, as shown in one meta-analysis. 28 Although little of this research is specific to cancer patients, one study of 230 patients with advanced cancer (expected prognosis <1 year) investigated a variety of associations between religiousness and spiritual support. 29 Most study participants (88%) considered religion either very important (68%) or somewhat important (20%); more African Americans and Hispanics than whites reported religion to be very important. Spiritual support by religious communities or the medical system was associated with better patient quality of life. Age was not associated with religiousness. At the time of recruitment to participate in the study, increasing self-reported distress was associated with increasing religiousness, and private religious or spiritual activities were performed by a larger percentage of patients after their diagnosis (61%) than before (47%). Regarding spiritual support, 38% reported that their spiritual needs were supported by a religious community to a large extent or completely, while 47% reported receiving support from a religious community to a small extent or not at all. Finally, religiousness was also associated with the end-of-life treatment preference of wanting all measures taken to extend life. Another study 30 found that helper and cytotoxic T-cell counts were higher among women with metastatic breast cancer who reported greater importance of spirituality. Other investigators 31 found that attendance at religious services was associated with better immune system functioning. Other research 32 33 suggests that religious distress negatively affects health status. These associations, however, have been criticized as weak and inconsistent. 34
Several randomized trials with cancer patients have suggested that group support interventions benefit survival. 35 36 These studies must be interpreted cautiously, however. First, the treatments focused on general psychotherapeutic issues and psychosocial support. Although spiritually relevant issues undoubtedly arose in these settings, they were not the focus of the groups. Second, there has been difficulty replicating these effects. 37
These approaches have different potential value and limitations. Patients may express reluctance to bring up spiritual issues, noting that they would prefer to wait for the provider to broach the subject. Standardized assessment tools vary, have generally been designed for research purposes, and need to be reviewed and utilized appropriately by the provider. Physicians, unless trained specifically to address such issues, may feel uncomfortable raising spiritual concerns with patients. 3 However, an increasing number of models are becoming available for physician use and training. 4
Numerous assessment tools are pertinent to performing a religious and spiritual assessment. Table 1 summarizes a selection of assessment tools. Several factors should be considered before choosing an assessment tool:
The line between assessment and intervention is blurred, and simply inquiring about an area such as religious or spiritual coping may be experienced by the patient as an opening for further exploration and validation of the importance of this experience. Evidence suggests that such an inquiry will be experienced as intrusive and distressing by only a very small proportion of patients. Key assessment approaches are briefly reviewed below; pertinent characteristics are summarized in Table 1.
One of several paper-and-pencil measures can be given to patients to assess religious and spiritual needs. These measures have the advantage of being self-administered; however, they were mostly designed as research tools, and their role for clinical assessment purposes is not as well understood. These measures may be helpful in opening up the area for exploration and for ascertaining basic levels of religious engagement or spiritual well-being (or spiritual distress). Most also assume a belief in God and therefore may seem inappropriate for an atheist or agnostic patient, who may still be spiritually oriented. All of the measures have undergone varying degrees of psychometric development, and most are being used in investigations of the relationship between religion or spirituality, health indices, and adjustment to illness.
The questions are worded well and may provide a good initiation for further discussion and exploration.
The following are semistructured interviewing tools designed to facilitate an exploration, by the physician or other health care provider, of religious beliefs and spiritual experiences or issues. The tools take the spiritual history approach and have the advantage of engaging the patient in dialogue, identifying possible areas of concern, and indicating the need for provision of further resources such as referral to a chaplain or support group. These approaches, however, have not been systematically investigated as empirical measures or indices of religiousness or of spiritual well-being or distress.