INTRODUCTION — The experience of serious illness is multifaceted and dynamic, impacting the physical, psychological, social, and spiritual dimensions of the human person. Dame Cecily Saunders, founder of the hospice and palliative care movements, recognized these four distinct yet intertwined domains in defining the concept of “total pain” in the 1960s, a holistic and enduring framework to guide the care of seriously ill persons [1,2].
The relationship between spirituality and health has gained increased attention in the United States and elsewhere. Spirituality (which includes religious and existential aspects of care) is one of eight specific domains of quality within palliative care, endorsed by the National Consensus Project (NCP) for Quality Palliative Care and international palliative care organizations [3,4]. However, spirituality has historically been one of the least studied and addressed domains within the care of the seriously ill [5,6]. A growing body of literature supports the notion that spiritual care is an important patient need in palliative care, that spiritual distress is a significant component of overall distress in palliative care patients, and that patients’ spirituality affects health care decision-making and health care outcomes, including coping, quality of life, and pain management.
This topic will review the available evidence linking spirituality and palliative care outcomes. An overview of spirituality in palliative care, which includes how to address spirituality with patients, methods of spiritual assessment, taking of a spiritual history, and approaches to spiritual distress, is addressed elsewhere. (See "Overview of spirituality in palliative care".)
DEFINITIONS
●Spirituality is multidimensional and highly variable in its individual and/or communal experiences and expressions. It is often understood as encompassing the relationship to and experience of transcendence [7] or sense of peace, purpose, and interconnectedness, including beliefs about the meaning of life [8].
Because of the need to standardize a definition for spirituality in palliative care, a group of interdisciplinary experts in palliative and spiritual care produced a consensus definition of spirituality as the aspect of humanity that refers to the way individuals seek and express meaning and purpose, and the way they experience their connectedness to the moment, to self, to others, to nature, and to the significant or sacred [9]. Spirituality may include religion and other worldviews but encompasses far more general ways in which these experiences are expressed, including through the arts, relationships with nature and others, and, for some, through the concept of secular humanism, the latter of which emphasizes reason, scientific inquiry, individual freedom and responsibility, human values, compassion, and the needs for tolerance and cooperation [10].
●Religion is a structure through which a person or group of persons expresses spirituality within a community. A religious community is one that is organized around common beliefs, attitudes, practices, traditions, and relationships [11].
SPIRITUAL DOMAINS AS FUNCTIONAL STATES AND AS OUTCOMES — Religion and spirituality [12] play a multidimensional role for patients and families in the setting of serious illness. The most frequently explored spirituality domains in palliative care include the importance of spirituality, spiritual experience, positive and negative religious/spiritual coping, the spiritual needs of patients and caregivers, religiousness (eg, religion, religious affiliation), and spiritual/religious practices. These religious/spiritual domains have been found to relate to a variety of patient and family outcomes, such as medical decision-making and quality of life for patients/caregivers [5,6,13-36]. (See 'Influence of spirituality and religiousness on outcomes' below.)
Evaluating research exploring the impact of spirituality on outcomes in palliative care requires a framework of specific spiritual domains being assessed (independent predictors) as well as the outcomes being examined (dependent variables). Spiritual predictor variables generally include spiritual functional states such as religious coping or spiritual practices. Dependent variables can include a variety of outcomes that are hypothesized to be influenced by such spiritual predictors, eg, quality of life, medical decision-making at the end of life. Outcomes may also include specific spiritual dependent variables, such as spiritual wellbeing, a domain of patient quality of life (often conceptualized as multidimensional, with domains including meaning, peace, and faith [37]), or the outcome of spiritual distress (sometimes termed “spiritual pain”). Although spiritual outcome variables can be conceptualized as outcome predictors (eg, examining the relationship of spiritual wellbeing or distress to medical decision-making), care should be taken in outcomes research to clearly define the conceptual model, such as when examining spiritual wellbeing as a predictor of patient quality of life, given the conceptual overlap between these constructs [11,37].
In addition to considering the diversity of spiritual variables and their relationships to outcomes in serious illness, there are many potential persons influencing patient and family outcomes (the patients themselves, family, their faith community, and medical caregivers) that need to be considered in research examining the link between spirituality and outcomes in palliative care patients (table 1).
MEASURING SPIRITUALITY AND RELIGIOUSNESS — There are a variety of tools for measuring patient spirituality and religiousness. One of the most comprehensive tools for general health research is the Multidimensional Measures of Religiousness and Spirituality (MMRS), which was developed by an expert panel working group convened by the Fetzer Institute and the National Institute on Aging [38]. The tool identifies 12 domains of spirituality/religiousness, with scales for each domain, including measures of spiritual experiences such as the Daily Spiritual Experiences Scale [39] and the forgiveness scale [39]. As highlighted by the MMRS, spirituality/religiousness are multidimensional constructs. In general, spirituality and religiousness are conceptualized as separate, though often highly related, dimensions, commensurate with the aforementioned definitions of these terms. Measures of spiritual dimensions generally refer to an individual’s search for or experience of spirituality (eg, meaning, purpose, connection to God or higher power). By contrast, religious dimensions in general refer to communally structured forms of spirituality, such as attendance of religious services. A systematic review of spirituality measures provides guidance regarding each scale’s validation, cross-cultural applicability, and dimensions of spirituality examined [40].
INFLUENCE OF SPIRITUALITY AND RELIGIOUSNESS ON OUTCOMES — Patients’ spirituality and religiousness can influence health care decision-making and health care outcomes including coping, quality of life, and pain management.
Religiousness and health care decision-making — A growing body of literature supports the view that religion affects health care decision-making, particularly at the end of life [33,34]. Several studies have shown that religious factors, including religiousness [6,35] and religious beliefs about specific end-of-life treatment preferences [36,41], are associated with reduced acceptance of the terminal nature of illness and preferences for more aggressive medical interventions at the end of life.
To our knowledge, there are few prospective studies that link patient religious domains to the types of medical care received at the end of life:
●The Coping with Cancer I study, a multisite, prospective cohort study of 345 advanced cancer patients, found that patients exhibiting high levels of positive religious coping at baseline received more aggressive interventions in the last week of life (eg, care in an intensive care unit [ICU], resuscitation) even after controlling for confounding factors including race and other coping characteristics [42]. Additional results from this study are presented below. (See 'Medical team interventions and outcomes' below.)
●On the other hand, a secondary analysis of a randomized trial that evaluated the influence of physician communication style on patient resuscitation preferences found no significant association between intensity of patient religiosity and preference for resuscitation at the end of life [43].
Differences in religious beliefs may explain some of the reported health care disparities in end-of-life medical care. Studies show that race/ethnicity (largely African American and Latino) is associated with greater endorsement of religiousness and religious beliefs about care [6,35,36,44] and religious coping [35], factors that are likewise associated with a greater preference for aggressive end-of-life interventions [35,36,45] and reduced advance care planning [35]. However, to our knowledge, there are no prospective studies that provide a link between race/ethnicity and religiousness/spirituality, to care received at the end of life, and especially to the patient-centered outcome of goal attainment in end-of-life medical care (eg, place of death and end-of-life medical care consistent with patient goals/treatment preferences).
The Religious Beliefs in EOL Medical Care (RBEC) scale was developed for use in patients with advanced cancer and measures religious beliefs regarding end-of-life care [41]. The seven-item scale assesses the influence of four concepts (God’s sovereignty, sanctification through suffering, sanctity of life, and miracles) on preferences for end-of-life care in general, with one question regarding do-not-resuscitate orders. In this validation study, most patients (87 percent) reported at least some endorsement of one or more of the RBEC items. In adjusted models, increasing RBEC scale endorsement was associated with reduced acceptance of the terminal nature of illness. The study was performed among 275 racial/ethnically diverse patients recruited from cancer centers across the United States. However, limitations include those relevant to a United States setting, most notably the population being predominantly Christian. Furthermore, the wording of the items is specific to cancer, limiting its applicability to other diseases and hence requiring wording adaptation and additional validation to have utility in other settings.
Impact of spirituality/religion on quality-of-life outcomes — Most of the outcomes research in spirituality and palliative care has focused on the influence of religion, spirituality, and spiritual wellbeing on patient quality of life and its subdomains (eg, psychological, social, physical, spiritual wellbeing). The available data suggest that palliative care patients with higher levels of spirituality have better quality of life and that supporting spiritual wellbeing is useful, especially as patients approach the end of life. The impact of formal spiritual care interventions or palliative care interventions that have a spiritual or religious component on measures of quality of life is less certain, but available studies suggest their association with improved quality of life outcomes among palliative patient populations.
Spirituality is associated with an improved quality of life for those with chronic and serious illness [46], which appears to hold true regardless of life expectancy [47]. The vast majority (although not all [48]) studies involving palliative care populations demonstrate significant, positive associations between measures of patient spirituality and quality of life [19,22,28,31,39,49-62]. As examples:
●In one trial of 103 patients with advanced cancer, spiritual wellbeing (measured by a Linear Analogue Self-Assessment scale) was strongly associated with overall quality of life, mental wellbeing, physical wellbeing, emotional wellbeing, and social wellbeing [54].
●A systematic review of the association between spiritual wellbeing and quality of life in 36 studies (32 cross-sectional, 4 longitudinal) of patients with cancer found that the majority of studies found a positive association between spiritual wellbeing and quality of life, but the impact was stronger for emotional and functional than for physical dimensions of quality of life [57]. Of the 18 studies that examined the faith factor of spiritual wellbeing, most (but not all [63]) concluded that faith was positively associated with quality of life, even after controlling for demographic and clinical variables.
●In other studies, spiritual wellbeing has been associated with lower levels of depression, better quality of life near death, and protection against end-of-life despair and desire for hastened death in patients with cancer [62,64,65].
●Three meta-analyses examining the relationship between spirituality/religiousness and physical, mental, and social health encompassed 1341 effects drawn from more than 44,000 patients with cancer [59-61]. The results suggest that each of the evaluated patient-reported health domains was significantly, albeit modestly, related to overall religiousness/spirituality (table 2).
●Among patients living with HIV disease, spiritual wellbeing was positively related to quality of life, social support, and effective coping strategies and negatively related to perceived stress, uncertainty, and emotion-focused coping [52].
●Similarly, among patients with advanced chronic kidney disease, spiritual beliefs and existential wellbeing correlate positively with health-related quality of life [53,66].
●Studies in a variety of palliative care populations have also demonstrated negative associations of spirituality measures with measures of psychological distress, including depression [19,22,50,62], anxiety [19], and hopelessness [49], and that patients with chronic illness, patients with cancer, or those who are older adults who experience spiritual distress are at risk for poorer health outcomes, including worse physical health, worse quality of life, and greater depression [67-69]. Patients who report longstanding spiritual or religious struggles were at greater risk of disability [70], higher indices of pain and fatigue, and more difficulties with daily physical functioning [67]. Although more limited data are available, spiritual distress may also predict a greater mortality risk, even when controlling for demographic, physical health, and mental health factors [67].
These studies examining associates of measures of spirituality are limited by key weaknesses, including predominantly cross-sectional designs, inadequate adjustment for potential confounding factors (such as social class), and potential for conceptual overlap between the measures of spirituality and quality of life.
Few studies have examined specific patient spiritual practices (eg, prayer, meditation, reading of sacred texts, sacred rituals [eg, communion]) and their relationship to quality of life outcomes in the setting of advanced illness, particularly among patients with spiritual struggles. While two small single-arm mindfulness-based stress reduction (MBSR) intervention studies suggest that mind-body meditation is associated with modest positive improvements in psychological and spiritual quality of life for patients [71,72], the results of two randomized trials in palliative care populations have been mixed (see 'Specific interventions' below):
●One randomized study [73] showed no evidence of improvements in quality of life with MBSR alone, compared with usual care, but found quality of life benefits when MBSR was combined with massage.
●On the other hand, a second randomized trial [74] found no quality of life benefits with MBSR compared with usual care.
Impact of spiritual needs — Although studies suggest that patients with advanced illness frequently have spiritual needs (eg, seeking meaning, needing forgiveness) [20,29,75], few data are available to describe the relationship between spiritual needs and overall quality of life. One study among patients with advanced cancer (with 86 percent having one or more spiritual concerns) showed that higher levels of spiritual concerns (including spiritual struggles [feeling abandoned by God] or spiritual seeking [seeking forgiveness, thinking about what gives meaning in life]) had worse psychological and overall quality of life [29]. Similarly, another study of 727 racially/ethnically and religiously diverse patients seen in oncology clinics found that spiritual needs were present for 79 percent and that greater spiritual needs were associated with less satisfaction with care and lower perceptions of the quality of care [75].
Impact of religiousness — In contrast to spirituality, studies examining religiousness and its associations with patient quality of life are few, and they have not demonstrated consistent associations with patient quality of life:
●In a report of 53 patients with end-stage kidney disease treated with hemodialysis, greater perception of religiosity correlated with an increased perception of social support and quality of life and less negative perception of illness effects and depression [76].
●Multiple studies have examined positive and negative religious coping, often assessed using Pargament’s validated RCOPE tool [77], as predictors of patient quality of life. Positive religious coping has had inconsistent associations with improved quality of life in the setting of advanced illness; while some studies indicate a positive association with quality of life [28], many report no association [6,26,78,79]. By contrast, negative religious coping has been consistently found to be associated with decrements in patient quality of life [6,26,78-80].
Family spiritual domains and outcomes — Data exploring spiritual domains and outcomes among caregivers are limited, though the available data suggest that spirituality/religion plays an important role in caregiver wellbeing. Spiritual pain appears to be frequent among caregivers of patients with serious illness and is associated with poorer caregiver quality of life, though the data are scant and limited by such factors as the frequent use of cross-sectional designs.
There are few studies exploring the relationship of family caregiver spiritual domains and outcomes in the context of a loved one’s serious illness [15,27,81,82]. As examples:
●One cross-sectional study of 1229 family caregivers of patients with dementia (the REACH study [15]) demonstrated that the majority of caregivers consider religious faith/spirituality to be important to them. Additionally, the study found that faith, spiritual practices (eg, prayer/meditation), and attendance of religious services were each associated with reduced depressive symptoms and less complicated grief among bereaved caregivers in adjusted analyses.
In another study of caregivers of persons with Alzheimer disease, among caregiving wives, spiritual behaviors such as prayer and spiritual reading improved depression and enhanced social support [83].
●A cross-sectional study of caregivers of cancer patients in India found greater posttraumatic growth among those family caregivers exhibiting higher positive religious coping with illness [27].
A survey-based study of 174 bereaved siblings of cancer patients employed qualitative methods to assess the siblings’ coping, showing four primary coping methods: (1) engaging in spiritual and religious activities; (2) expressing grief for their deceased sibling; (3) distracting themselves; and (4) waiting for time to pass. Of these coping strategies, only spirituality was significantly associated with the sibling’s self-assessment of having worked through their grief two to nine years after the death [82].
Influence of the medical teams and faith communities on outcomes — Support of spiritual needs by the medical teams and faith communities can influence patient and family health care outcomes, although the contribution of specific spiritual or religious interventions to enhance wellbeing in palliative care patients is less certain.
Medical team interventions and outcomes — The available data examining the impact of spiritual care provided by medical teams on patient outcomes demonstrate a positive impact of spiritual support by the medical team on patient and family quality of life, while more limited data among patients suggest that spiritual support facilitates transitions to more quality of life-focused forms of end-of-life medical care (eg, greater hospice use, fewer aggressive interventions). A survey-based study of 339 physicians and nurses examining predictors of spiritual care provision to advanced cancer patients found that spiritual care training was the main predictor of spiritual care provision (adjusted odds ratio [OR] for physicians = 11.20, 95% CI 1.24-101; and adjusted OR for nurses = 7.22, 95% CI 1.91-27.30, respectively). Notably, most oncology physicians (88 percent) and nurses (86 percent) reported that they received no spiritual care training [84]. Training programs to teach health care providers to provide spiritual care can increase the frequency of religious/spiritual care that is provided [85]. Other predictors of spiritual care provision, such as having an integrated structure for spiritual care (multidisciplinary teams inclusive of chaplaincy), are among other potential factors that may influence medical team spiritual care provision, though data are required to explore and validate these relationships.
The available data linking interventions by the medical care team to patient outcomes are as follows:
●The previously mentioned Coping with Cancer study was designed to prospectively assess the roles of psychosocial and spiritual factors on end-of-life outcomes in patients with advanced, incurable cancers [42]. As part of the baseline interview, support of patient spiritual needs by the medical team was assessed by the patient with a single item. Patients reporting high spiritual support by the medical care team at baseline experienced significantly higher quality of life scores at the end of life (as reported by caregivers present in the last week of life). Furthermore, patients reporting high support of their spiritual needs were significantly more likely to receive hospice care and they had significantly fewer aggressive interventions (adjusted OR 0.23, 95% CI 0.06-0.79) and fewer deaths in the ICU. (See 'Impact of spirituality/religion on quality-of-life outcomes' above.)
●Another study of spiritual care and its impact on outcomes employed a semi-structured exploration of religious/spiritual concerns among oncologists seeing patients (n = 118) in an outpatient clinic setting [86]. At three weeks post-intervention, intervention patients had greater reduction in depressive symptoms, more improvement in overall quality of life, and improved sense of interpersonal caring by the clinician.
●In a cross-sectional study of patients’ views and receipt of spiritual care by their medical teams, patients reporting that their spiritual needs were not met by their medical teams had lower ratings of quality of care and of satisfaction with care [5].
●In a prospective cohort study of 233 advanced cancer patients recruited from Soweto, South Africa, 39.5 percent received religious or spiritual care from their medical team. Those receiving spiritual care reported less pain, used less morphine, and were more likely to die at home compared with patients who did not receive spiritual care [87].
Many palliative care intervention studies include a spiritual component to the intervention, and there are variable associations with improved wellbeing and quality of care, among other outcomes, for patients and family caregivers. A key limitation of all of these trials is uncertainty as to what component of the intervention (or combination thereof) impacted these outcomes and the content of the spiritual interventions provided. Nevertheless, they provide additional support for the benefit of medical team interventions on outcomes. The data from trials of interdisciplinary interventions are as follows:
●A randomized trial of an interdisciplinary team intervention (including chaplains) to provide assessment and recommendations to the patient’s primary care provider in 90 patients with advanced illness (prognosis one to five years) addressed five domains: physical, psychological, social support, spiritual, and advance care planning [88]. There was less anxiety and dyspnea, improved sleep quality and spiritual wellbeing, and decreased primary care and urgent care visits in the intervention as compared with the control group.
●A second randomized trial of an eight-session educational intervention focusing on strategies to improve quality of life in five domains (cognitive, emotional, social, physical, and spiritual) conducted in 115 advanced cancer patients receiving palliative radiotherapy demonstrated better maintenance of quality of life (including the spiritual subdomain) among intervention patients [89].
●Another randomized trial examined the impact of an interdisciplinary home-based health care program (delivered by an interdisciplinary team, including chaplains) to address physical, medical, psychological, social, and spiritual needs of 298 seriously ill patients (prognosis <1 year) and their families [90]. There was greater satisfaction with care, greater home deaths, fewer emergency department visits, fewer hospitalizations, and reduced costs in the intervention as compared with the control group.
●A randomized trial of an inpatient palliative care intervention that included assessment and management of patient psychosocial and spiritual needs in 517 terminally ill patients showed no differences in patient-reported symptom control, quality of life, or spiritual support [91]. However, there was improved patient satisfaction with the care experience and provider communication, fewer ICU admissions, longer hospice stays, and lesser health care costs six months post-discharge among intervention as compared with control patients.
●Finally, a prospective study of 491 patients with lung cancer tested the effectiveness of an interdisciplinary palliative care intervention addressing patient wellbeing in four domains (physical, psychological, social, and spiritual) and found better quality of life (including better patient spiritual wellbeing), lower psychological distress, better symptom control, and significantly higher rates of completion of advance directives (44 versus 9 percent) in the intervention as compared with the control group [92].
●Addressing family caregivers, a prospective study of an interdisciplinary palliative care intervention for 366 family caregivers of patients with lung cancer that addressed caregiver wellbeing in four domains (physical, psychological, social, and spiritual), found better social and psychological wellbeing as well as less caregiver burden in the intervention versus usual care group [93].
Specific interventions — Specific psychotherapeutic spiritual care interventions have been developed and investigated with the aim of improving the quality of life of patients with advanced illness and existential concerns about the meaning of illness (ie, its impact on independence, control, self-determination, and self-worth). These include Breitbart’s meaning-centered psychotherapy [94-96], Steinhauser’s “Outlook” life review therapy [97], and Chochinov’s dignity therapy [98] (see "Assessment and management of depression in palliative care", section on 'Existential psychotherapy' and "Psychosocial issues in advanced illness", section on 'Common issues for patients with advanced illness'):
●Meaning-centered psychotherapy (a manualized, eight-session intervention aimed at improving meaning and spiritual wellbeing) has been tested in a pilot randomized controlled trial and demonstrated modest improvements in quality of life and spiritual wellbeing in the intervention group [96].
●Steinhauser’s Outlook is a manualized, three-session intervention sequentially focused on three areas: (1) telling of one’s life story; (2) forgiveness; and (3) heritage and legacy [97]. In a three-arm randomized controlled trial of 221 participants, the intervention demonstrated improvements in preparation for death and social wellbeing.
●Chochinov’s dignity therapy is a single session intervention based on the construct of dignity (independence and control), including spiritual, psychosocial, and existential elements. The tape-recorded session results in a document that loved ones can keep. In a randomized trial comparing dignity therapy with standard palliative care and with client-centered care, dignity therapy resulted in significant improvements in patient quality of life and spiritual wellbeing as compared with the other arms, though it did not impact levels of patient distress (the primary endpoint of the study) [98].
A final category of spiritual interventions provided in the medical setting is mind-body based interventions, such as MBSR and massage. Among patients, there are minimal data to inform its impact, with mixed findings regarding benefit. More data are available to inform the impact of mind-body interventions for caregivers, with a suggestion of potential quality of life benefits. (See 'Impact of spirituality/religion on quality-of-life outcomes' above.)
●A small pilot randomized study of 58 AIDS patients compared MBSR, massage, combined MBSR, and massage versus standard care [73]. The combination of meditation and massage has a significantly favorable influence on overall and spiritual quality of life in late-stage disease relative to standard care, or either intervention component alone.
●By contrast, another randomized study among 167 patients enrolled in hospice or palliative care or diagnosed with AIDS or incurable cancers failed to show a significant difference in quality of life outcomes among those randomized to massage or MBSR versus usual care [74].
●On the other hand, a systematic review of MBSR among family caregivers (10 studies, 7 of which involved patients with dementia, with 432 caregiver participants) concluded that MBSR is feasible and acceptable for caregivers, with five of seven studies showing reduced depression and four of five showing reduced caregiver burden [99]. However, the effects were not as robust as in the wider mindfulness intervention literature.
●In addition, in the pediatric setting, the Project ROSE study examined the impact of a physical contact initiative on the spiritual wellbeing of 331 caregivers of children admitted to a pediatric ICU. The pre- and postintervention study demonstrated that caregivers who had increased physical contact with their critically ill child had statistically higher spiritual wellbeing scores compared with caregivers not receiving the intervention [100]. Safety, as assessed by the frequency of unplanned extubations, was not different between the two groups.
A Cochrane review of five trials of spiritual and religious intervention in palliative care patients included three trials of a multidisciplinary approach that included the support of a chaplain (905 participants) [88,90,91], but there was no significant difference in wellbeing or quality of life between the arms in any of the three trials [101].
Faith communities and outcomes — Although faith communities play a key role in providing spiritual care to many patients and families, it remains unclear how spiritual support from faith communities influences patients’ medical care or quality of life at the end of life.
Few data exist regarding the impact of faith community involvement in terms of patient outcomes:
In the Coping with Cancer study described above, patient-reported high spiritual support by faith communities at baseline was associated with a significantly lower likelihood of hospice care (adjusted OR 0.37, 95% CI 0.20-0.70), and patients were significantly more likely to receive aggressive measures at the end of life (adjusted OR 2.62, 95% CI 1.14-6.06) and more likely to die in an ICU [42]. Associations with aggressive care were stronger in ethnic/minority patients. Although a high level of religious community spiritual support was positively associated with baseline patient-reported quality of life, it was not significantly associated with patient quality of life near death.
In a nationally representative survey study of United States religious community leaders (n = 1005), 92 percent reported having had a conversation about end-of-life medical decisions with their last congregant who had died. Clergy end-of-life medical knowledge influenced the types of discussions they had with patients. Reduced clergy end-of-life medical knowledge was related to fewer hospice discussions, conversations about stopping treatments, and discussions about do-not-resuscitate orders with ill congregants. Congregants whose religious community leader had discussed hospice with them were more likely to go on to receive hospice care and less likely to receive ICU care at the end of life. These findings suggest that religious community leaders play an important role in assisting religious patients in making end-of-life medical decisions, and providing clergy with end-of-life medical education may result in greater end-of-life discussions promoting quality of life-focused end-of-life care, such as hospice [102].
SOCIETY GUIDELINE LINKS — Links to society and government-sponsored guidelines from selected countries and regions around the world are provided separately. (See "Society guideline links: Palliative care".)
SUMMARY
●The experience of serious illness is multifaceted and dynamic, impacting the physical, psychological, social, and spiritual dimensions of the human person. Spirituality (which includes religious and existential aspects of care) is one of eight specific domains of quality within palliative care, endorsed by the National Consensus Project (NCP) for Quality Palliative Care and other palliative care organizations, but it is one of the least studied and addressed domains within the care of the seriously ill. (See 'Introduction' above.)
●Spirituality and religiousness are distinct yet related entities. Spirituality has been broadly defined in terms of the ways individuals “seek and express meaning and purpose, and the way they experience their connectedness to the moment, to self, to others, to nature, and to the significant or sacred.” Spirituality may include religion and other worldviews but encompasses far more general ways in which these experiences are expressed. By contrast, religion represents the communal structures and expressions of spirituality that are shared by a group of people.
●A growing body of literature supports the notion that a patient’s spirituality/religiousness affects health care decision-making and health care outcomes, including coping and quality of life:
•Religious factors (eg, religious coping, religiousness, and religious beliefs about care) are associated with a greater preference for and (in the case of positive religious coping) actual receipt of aggressive medical care at life’s end. Furthermore, religiousness and religious beliefs about care are more commonly endorsed among certain racial/ethnic minority groups, most notably African Americans and Latinos, which, given their role in end-of-life decision-making, may account for some of the observed racial/ethnic disparities in end-of-life care. (See 'Religiousness and health care decision-making' above.)
•The available data support the view that palliative care patients with higher levels of spirituality have better quality of life and that supporting spiritual wellbeing is useful, especially as patients approach the end of life. Studies examining religiousness and its associations with patient quality of life are few, and they have not demonstrated consistent associations between positive religious coping and improved patient quality of life. By contrast, negative religious coping has been consistently found to be associated with decrements in patient quality of life. (See 'Impact of spirituality/religion on quality-of-life outcomes' above.)
●The spiritual practices of caregivers and families can influence both patient and caregiver outcomes (table 1). Although the number of studies exploring spiritual domains and outcomes among caregivers is limited, the available data suggest that spirituality/religion plays an important role in caregiver wellbeing. Spiritual pain appears to be frequent among caregivers of patients with serious illness and is associated with poorer caregiver quality of life. (See 'Family spiritual domains and outcomes' above.)
●The available data specifically examining the impact of spiritual care provided by medical teams on patient outcomes demonstrate a positive impact of spiritual support on patient quality of life, while more limited data suggest that spiritual support facilitates transitions to more quality of life-focused forms of end-of-life medical care (eg, greater hospice use, less aggressive interventions). Specific spiritual interventions (eg, dignity therapy, meaning-based psychotherapy) demonstrate modest improvements in quality of life outcomes. Many studies of palliative care interventions have included a spiritual component as a key domain, with these studies variably demonstrating benefits to patient quality of life and care quality, though it is unclear to what degree the spiritual component of these interventions contributed to those outcomes. Finally, data informing mind-body interventions for patients are few and thus far have not consistently demonstrated benefits to patient wellbeing; whereas among caregivers, the available data suggest that mindfulness-based interventions have modest benefits to caregiver quality of life. (See 'Medical team interventions and outcomes' above.)
The adoption of spiritual care training for medical professionals caring for patients with serious illness could increase spiritual care provision and hence improve patient wellbeing and quality of medical care.
●There is a need for further research to better understand the complex relationships between spirituality/religiousness and patient outcomes in a palliative care population and to guide evidence-based spiritual care provision to patients and families facing serious illness.
1 : Care of patients suffering from terminal illness at St. Joseph's Hospice, Hackney, London
2 : The symptomatic treatment of incurable malignant disease
3 : The symptomatic treatment of incurable malignant disease
4 : National Consensus Project Clinical Practice Guidelines for Quality Palliative Care Guidelines, 4th Edition.
5 : Is failure to meet spiritual needs associated with cancer patients' perceptions of quality of care and their satisfaction with care?
6 : Religiousness and spiritual support among advanced cancer patients and associations with end-of-life treatment preferences and quality of life.
7 : Provision of spiritual care to patients with advanced cancer: associations with medical care and quality of life near death.
8 : Provision of spiritual care to patients with advanced cancer: associations with medical care and quality of life near death.
9 : Improving the quality of spiritual care as a dimension of palliative care: the report of the Consensus Conference.
10 : What's the problem? A response to "secular humanism and scientific psychiatry".
11 : State of the Science of Spirituality and Palliative Care Research Part I: Definitions, Measurement, and Outcomes.
12 : State of the Science of Spirituality and Palliative Care Research Part I: Definitions, Measurement, and Outcomes.
13 : "If God wanted me yesterday, I wouldn't be here today": religious and spiritual themes in patients' experiences of advanced cancer.
14 : Spiritual issues and needs: perspectives from patients with advanced cancer and nonmalignant disease. A qualitative study.
15 : Religious beliefs and practices are associated with better mental health in family caregivers of patients with dementia: findings from the REACH study.
16 : The degree to which spiritual needs of patients near the end of life are met.
17 : The influence of spiritual beliefs and practices on the treatment preferences of African Americans: a review of the literature.
18 : Religious attitudes and practices of hospitalized medically ill older adults.
19 : Is there a correlation between spirituality and anxiety and depression in patients with advanced cancer?
20 : Seeking meaning and hope: self-reported spiritual and existential needs among an ethnically-diverse cancer patient population.
21 : Religiousness and spirituality in fibromyalgia and chronic pain patients.
22 : Spirituality, religion, and depression in the terminally ill.
23 : Religious coping and use of intensive life-prolonging care near death in patients with advanced cancer.
24 : Effect of Religion on End-of-Life Care Among Trauma Patients.
25 : Importance of faith on medical decisions regarding cancer care.
26 : Religious coping is associated with the quality of life of patients with advanced cancer.
27 : Religious coping and posttraumatic growth among family caregivers of cancer patients in India.
28 : The role of spirituality and religious coping in the quality of life of patients with advanced cancer receiving palliative radiation therapy.
29 : The relationship of spiritual concerns to the quality of life of advanced cancer patients: preliminary findings.
30 : An exploratory factor analysis of existential suffering in Japanese terminally ill cancer patients.
31 : A case for including spirituality in quality of life measurement in oncology.
32 : Do spiritual patients want spiritual interventions?: A qualitative exploration of underserved cancer patients' perspectives on religion and spirituality.
33 : A healing curriculum.
34 : A biopsychosocial-spiritual model for the care of patients at the end of life.
35 : Treatment preferences and advance care planning at end of life: the role of ethnicity and spiritual coping in cancer patients.
36 : Racial/ethnic differences in end-of-life treatment preferences: The role of religious beliefs about care, Abstract 6529
37 : Spiritual Well-being as a Component of Health-Related Quality of Life: The Functional Assessment of Chronic Illness Therapy - Spiritual Well-Being Scale (FACIT-Sp)
38 : Spiritual Well-being as a Component of Health-Related Quality of Life: The Functional Assessment of Chronic Illness Therapy - Spiritual Well-Being Scale (FACIT-Sp)
39 : Dimensions of religiousness and spirituality as predictors of well-being in advanced chronic heart failure patients.
40 : The measurement of spirituality in palliative care and the content of tools validated cross-culturally: a systematic review.
41 : A scale to assess religious beliefs in end-of-life medical care.
42 : Provision of spiritual support to patients with advanced cancer by religious communities and associations with medical care at the end of life.
43 : The association between religiosity and resuscitation status preference among patients with advanced cancer.
44 : The association between religiosity and resuscitation status preference among patients with advanced cancer.
45 : Racial and ethnic differences in end-of-life costs: why do minorities cost more than whites?
46 : Do religious/spiritual coping strategies affect illness adjustment in patients with cancer? A systematic review of the literature.
47 : Psycho-spiritual well-being in patients with advanced cancer: an integrative review of the literature.
48 : Spirituality, religiosity, and spiritual pain in advanced cancer patients.
49 : Effect of spiritual well-being on end-of-life despair in terminally-ill cancer patients.
50 : Spiritual well-being and depression in patients with heart failure.
51 : Spirituality as a core domain in the assessment of quality of life in oncology.
52 : Spirituality and psychosocial factors in persons living with HIV.
53 : The relationship between spirituality, psychosocial adjustment to illness, and health-related quality of life in patients with advanced chronic kidney disease.
54 : Measuring spiritual quality of life in patients with cancer.
55 : Factors considered important at the end of life by patients, family, physicians, and other care providers.
56 : The impact of spirituality on health-related quality of life among Chinese older adults with vision impairment.
57 : A systematic review of associations between spiritual well-being and quality of life at the scale and factor levels in studies among patients with cancer.
58 : Exploring the relationship between spiritual well-being and quality of life among patients newly diagnosed with advanced cancer.
59 : A meta-analytic review of religious or spiritual involvement and social health among cancer patients.
60 : Religion/spirituality and health in the context of cancer: Cross-domain integration, unresolved issues, and future directions.
61 : A meta-analytic approach to examining the correlation between religion/spirituality and mental health in cancer.
62 : Relationship Between Spirituality, Meaning in Life, Psychological Distress, Wish for Hastened Death, and Their Influence on Quality of Life in Palliative Care Patients.
63 : Spirituality and quality of life in low-income men with metastatic prostate cancer.
64 : The delirium experience: delirium recall and delirium-related distress in hospitalized patients with cancer, their spouses/caregivers, and their nurses.
65 : Cancer and the experience of meaning: a group psychotherapy program for people with cancer.
66 : ESRD patient quality of life: symptoms, spiritual beliefs, psychosocial factors, and ethnicity.
67 : Religious coping methods as predictors of psychological, physical and spiritual outcomes among medically ill elderly patients: a two-year longitudinal study.
68 : Religion, spirituality, and health care: social, ethical, and practical considerations.
69 : Religion, spirituality, and health care: social, ethical, and practical considerations.
70 : Taking a spiritual history allows clinicians to understand patients more fully.
71 : The efficacy of mindfulness-based meditation therapy on anxiety, depression, and spirituality in Japanese patients with cancer.
72 : A non-randomized comparison of mindfulness-based stress reduction and healing arts programs for facilitating post-traumatic growth and spirituality in cancer outpatients.
73 : A randomized controlled trial of meditation and massage effects on quality of life in people with late-stage disease: a pilot study.
74 : Might massage or guided meditation provide "means to a better end"? Primary outcomes from an efficacy trial with patients at the end of life.
75 : Spiritual Needs and Perception of Quality of Care and Satisfaction With Care in Hematology/Medical Oncology Patients: A Multicultural Assessment.
76 : Psychosocial variables, quality of life, and religious beliefs in ESRD patients treated with hemodialysis.
77 : The many methods of religious coping: development and initial validation of the RCOPE.
78 : Religious struggle and religious comfort in response to illness: health outcomes among stem cell transplant patients.
79 : Positive and negative religious coping and well-being in women with breast cancer.
80 : Positive and negative religious coping, depressive symptoms, and quality of life in people with HIV.
81 : Spiritual well-being associated with personality traits and quality of life in family caregivers of cancer patients.
82 : Spirituality and religious coping are related to cancer-bereaved siblings' long-term grief.
83 : Spirituality among caregivers.
84 : Why is spiritual care infrequent at the end of life? Spiritual care perceptions among patients, nurses, and physicians and the role of training.
85 : Teaching health care providers to provide spiritual care: a pilot study.
86 : Oncologist Assisted Spiritual Intervention Study (OASIS): patient acceptability and initial evidence of effects.
87 : Spiritual Care, Pain Reduction, and Preferred Place of Death Among Advanced Cancer Patients in Soweto, South Africa.
88 : The comprehensive care team: a controlled trial of outpatient palliative medicine consultation.
89 : Impacting quality of life for patients with advanced cancer with a structured multidisciplinary intervention: a randomized controlled trial.
90 : Increased satisfaction with care and lower costs: results of a randomized trial of in-home palliative care.
91 : Impact of an inpatient palliative care team: a randomized control trial.
92 : Interdisciplinary Palliative Care for Patients With Lung Cancer.
93 : Effectiveness of an interdisciplinary palliative care intervention for family caregivers in lung cancer.
94 : Spirituality and meaning in supportive care: spirituality- and meaning-centered group psychotherapy interventions in advanced cancer.
95 : Psychotherapeutic interventions at the end of life: a focus on meaning and spirituality.
96 : Pilot randomized controlled trial of individual meaning-centered psychotherapy for patients with advanced cancer.
97 : Addressing Patient Emotional and Existential Needs During Serious Illness: Results of the Outlook Randomized Controlled Trial.
98 : Effect of dignity therapy on distress and end-of-life experience in terminally ill patients: a randomised controlled trial.
99 : Evaluating the effects of mindfulness-based interventions for informal palliative caregivers: A systematic literature review.
100 : Prospective Evaluation of Physical Contact with Critically Ill Child on Caregiver Spiritual Wellbeing.
101 : Spiritual and religious interventions for well-being of adults in the terminal phase of disease.
102 : U.S. Clergy Religious Values and Relationships to End-of-Life Discussions and Care.