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Patients frequently rely on religious faith to cope with cancer, but little is known about the associations between religious coping and the use of intensive life-prolonging care at the end-of-life (EOL).
To determine the way religious coping relates to the use of intensive life-prolonging EOL care among advanced cancer patients.
A US multi-site, prospective, longitudinal cohort of 345 advanced cancer patients enrolled January, 2003 –August, 2007. The Brief RCOPE assessed positive religious coping. Baseline interviews assessed spirituality, psychosocial measures, and EOL treatment preferences. Patients were followed until death, a median of 122 days after baseline assessment.
Intensive life-prolonging care, defined as receipt of mechanical ventilation or cardiopulmonary resuscitation in the last week of life. Logistic regression analyses were adjusted for demographic factors significantly associated with positive religious coping and any EOL outcome at p<0.05 (age and race/ethnicity).
Greater use of positive religious coping was associated with increased preference for heroic measures (38.3% vs 8.6%; OR 6.60; 95% CI, 3.53–12.36), and lower rates of DNR order completion (33.4% vs 49.4%; OR 0.53; 95% CI 0.34–0.81), living will completion (29.4% vs 68.1%; OR 0.20; 95% CI 0.12–0.31), and designation of a healthcare proxy (34.1% vs 63.9%; OR, 0.29; 95% CI, 0.19–0.46) at baseline. Positive religious coping at baseline was significantly associated with receipt of mechanical ventilation (11.3% vs 3.6%; AOR 2.81; 95% CI, 1.03–7.69) and intensive life-prolonging care in the last week of life (13.6% vs 4.2%; AOR, 2.90; 95% CI, 1.14–7.35) after adjusting for demographic confounds (age and race/ethnicity). In models that further adjusted for other coping styles, acknowledgement of terminal illness, support of spiritual needs, preference for heroics, and completion of advance directives, positive religious coping remained significantly associated with receipt of intensive life-prolonging care near death (AOR, 2.90; 95% CI, 1.07–7.89).
Religious coping in advanced cancer patients is associated with receipt of intensive life-prolonging medical care near death. Future research is needed to determine the mechanisms by which religious coping may affect the intensity of EOL care received.
In a recent multi-center study 88% of advanced cancer patients reported religion and spirituality to be personally important in adjusting to their illness.1 Similarly high rates of daily prayer, meditation, and religious study underscore the importance of religion in coping with cancer1–3 [Koenig, pargament, balboni]. According to theorists, religious coping can offer patients a sense of meaning, comfort, control, and personal growth while facing life-threatening illness3 [pargament]. Distinct from more general measures of religiousness, religious coping refers to how a patient makes use of his or her religious belief to understand and adapt to stress. Patients who use religion to cope with their illness most often rely on positive religious coping, which is characterized by a constructive reliance on faith to promote healthy adaptation (e.g., through “seeking God’s love and care”)1–3. Positive religious coping has been widely associated with improved psychological adjustment to stressors including serious illness4 [anos]. Negative religious coping is uncommon, tends to view illness as a divine punishment, and can herald existential crisis4–7 [pargament & anos].
Beyond the role of religious faith in coping and adjusting to illness, religion may influence patients’ medical decisions. In a recent study of lung cancer patients, faith was cited as the second most important factor influencing treatment decisions after oncologist recommendations8 [silvestri]. Research also indicates that religious factors affect medical decisions at the EOL. In a survey of 1006 members of the general public 68.3% of people stated that their religious beliefs would guide their medical decisions if critically injured, and 57.4% believed that God could heal a patient even if doctors had pronounced further medical efforts to be futile9 [Jacobs]. Religiousness and religious coping have been associated with increased preference for cardiopulmonary resuscitation, mechanical ventilation, hospitalization near death10, and heroic EOL measures1 [Balboni & Gala True, Sullivan?]. It has been suggested that lower rates of advance care planning among minority patients may arise partly from spiritual appraisals of illness and healing (e.g. belief that only God knows one’s time to die.)11–13 [tulsky, bullock, crawley]
Despite evidence that religiousness is associated with preference for aggressive EOL care, it is unknown if religious factors influence the actual intensity of care received near death. We hypothesized that patients who rely heavily upon their religious faith to cope with advanced cancer would be more likely to receive intensive medical care near death (e.g. mechanical ventilation and/or cardiopulmonary resuscitation). Data from the Coping with Cancer (CwC) study, a federally-funded, multi-site, prospective cohort of advanced cancer patients were used to examine the relationship between patients’ use of positive religious coping at baseline and the receipt of intensive medical care in the last week of life.
Patients included in the present study were recruited between January 1, 2003, and August 31, 2007, as part of the Coping with Cancer (CwC) Study, an NCI- and NIMH-funded multi-institutional investigation of advanced cancer patients and their informal caregivers. The CwC study was designed to examine the relationships between psychosocial factors, with a focus on religion/spirituality, and EOL outcomes such as utilization of aggressive medical care and quality of death. Participating sites included Yale Cancer Center (New Haven, CT), Veterans’ Affairs Connecticut Healthcare System Comprehensive Cancer Clinics (West Haven, CT), Simmons Comprehensive Cancer Care Center (Dallas, TX), and Parkland Hospital Palliative Care Service (Dallas, TX), Massachusetts General Hospital (Boston, MA), Dana-Farber Cancer Institute (Boston, MA), and New Hampshire Oncology-Hematology (Hookset, NH).
Eligibility criteria were 1) diagnosis of an advanced cancer with metastases; 2) disease progression following first-line chemotherapy; 3)age at least 20 years; 4) presence of an informal caregiver (e.g. spouse); 5) adequate stamina to complete the 45 minute interview; and 6) ability to speak either English or Spanish. Patient-caregiver dyads in which either party was significantly cognitively impaired (by neurobehavioral cognitive status examination with more than 5 errors) were excluded.14 Both patients and caregivers underwent written, informed consent in accordance with protocols approved by the institutional review board of each participating site.
Each week outpatient clinic lists were reviewed by research and clinical staff to identify eligible participants. To avoid selection bias, religion/spirituality was not mentioned as a focus of the study to eligible patients.
Patients and caregivers participated in separate baseline interviews ($25 compensation) in English or Spanish, conducted by assistants trained by Yale University staff. Outpatient charts were reviewed to confirm clinical information and disease characteristics. Within two to three weeks of each patient’s death, the formal or informal caregiver most involved in the patient’s last week of life was contacted to provide information regarding the patient’s care and quality of death. Further information on healthcare received in the last week of life was obtained from the patient’s medical chart.
Socio-demographic characteristics were recorded as reported by the patient. Patients were asked “What race or ethnicity do you consider yourself to be?” with available responses being White, Black, Asian (American, Pacific Islander, or Indian), Hispanic, or other. Race/ethnicity was considered important because of known racial/ethnic differences in treatment preferences, advance care planning, and healthcare utilization at the EOL [crawley, smith, goodlin].
Disease information was obtained from the medical chart. Performance status was determined by the trained interviewer using the Karnofsky scale15 (scale 0–100, where 0=”dead” and 100= “asymptomatic”). The McGill Quality of Life Questionnaire assessed patient QOL at baseline (scale 0–10, where 0=desirable and 10=undesirable).16, 17
Patients completed Pargament’s Brief RCOPE,3 a previously validated 14-item questionnaire that assesses religious coping. The extent to which patients engage in 7 types of positive religious coping (e.g., “seeking God’s love and care”) and 7 types of negative religious coping (e.g., “wondering whether God has abandoned me”) were rated on a 4-point Likert scale from 0 (not at all) to 3 (a great deal). It should be noted that positive and negative religious coping are not mutually exclusive. Both positive and negative religious coping scales had high degrees of internal consistency (Cronbach’s α=0.90, Cronbach’s α=0.81, respectively) in the present sample. Overall, 92% of patients endorsed at least one positive religious coping scale item, with a median score of 12 of a possible 21 (Mean=11.1, SD=6.4). Patients who scored at or above the median were designated “high” (51.6%), and patients who scored below the median were designated “low” (48.4%) for positive religious coping. Only 43% of patients endorsed any negative religious coping scale item (Mean=2.0, SD=3.5). Negative religious coping was dichotomized as some use (score above zero), versus none (score at zero). Other research has demonstrated that negative religious coping is uncommon in medical samples5, 7, 18, 19 and is a strong indicator of psychopathology4–7, 18, 19. For these reasons and our intention to study normative religious coping styles, patients’ positive RCOPE score was chosen as our primary predictive variable and primary measurement of religious coping.
The Brief COPE survey20, 21 [ref] is a well-validated, widely used research tool that assesses 14 methods of coping (2 questionnaire items per coping method). Response options are on a 4-point Likert scale from 0 (not at all) to 3 (a great deal). We examined 3 coping techniques with demonstrated predictive validity and relevance for cancer and other seriously ill samples22–25 [ref]: active coping, emotional support based coping, and behavioral disengagement. Scores for active coping and emotional support based coping were split into high or low use of that coping style. Because of its infrequent endorsement, behavioral disengagement was dichotomized as some (score above zero) versus none (score at zero).
Patients were asked: “How would you describe your current health status?” with 4 possible responses being “relatively healthy,” “relatively healthy and terminally ill,” “seriously ill but not terminally ill,” and “seriously and terminally ill.”. Patients who responded “Seriously and terminally ill” or “Relatively healthy and terminally ill” were considered to acknowledge terminal illness. This measure has been associated with completion of DNR orders and hospice utilization in studies of terminally ill patients.26, 27
Patients were asked “to what extent are your religious/spiritual needs being supported by the medical system (e.g., doctors, nurses, chaplain)?” with 5 response options ranging from not at all to completely supported. Patients who responded “to a large extent” or “completely supported” were coded as having support of spiritual needs.
The well-validated Structured Clinical Interview for the DSM-IV (SCID) Axis I Modules [ref] was used to assess if patients met diagnostic criteria for panic disorder, major depressive disorder, generalized anxiety disorder, or post-traumatic stress disorder.
Patients were asked “If you could chose, would you prefer: 1) a course of treatment that focused on extending life as much as possible, even if it meant more pain and discomfort, or 2) on a plan of care that focused on relieving pain and discomfort as much as possible, even if that meant not living as long?” Preference for heroics was assessed by “Would you want the doctors here to do everything possible to keep you alive even if you were going to die in a few days anyway?” Patients were asked if they had completed a do-not-resuscitate (DNR) order, living will, or a healthcare proxy/durable power of attorney (HCP/DPOA).
The primary outcome was intensive life-prolonging care, defined as receipt of ventilation or resuscitation in the last week of life. Secondary outcomes assessed included hospice enrollment and death in an ICU.
For the sample size in the present study (N=345), and for nearly equal proportions of those classified as scoring high (51.6%) and scoring low (48.4%) on positive religious coping, the present study had adequate (~80% or more) statistical power to detect odds ratios of 3.0 or more for associations between positive religious coping and infrequent end-of-life care outcomes such as intensive life-prolonging care (at a overall rate of 9.0% in the present sample) and death in an ICU (at an overall rate of 7.5% in the present sample) at a significance level of p<0.05.
Associations between positive religious coping (high versus low) and patient characteristics were assessed using chi-square and t tests where appropriate. Associations between positive religious coping and EOL care outcomes were assessed using multivariable logistic regression analyses, adjusting for significant socio-demographic confounds. Confounding factors were considered to be patient socio-demographic characteristics associated with both positive religious coping at p < 0.05, and associated with any EOL care outcome at p < 0.05. Patient age and race/ethnicity (white versus non-white) met these criteria and were included in multivariable models relating positive religious coping to EOL care. The primary outcome was intensive life-prolonging care, defined as receipt of ventilation or resuscitation in the last week of life. To identify psychosocial factors that might confound or mediate the relationship between positive religious coping and the primary outcome, logistic regression analyses assessed the relationships between positive religious coping and the following psychosocial measures assessed at baseline: other coping methods (negative religious coping, active coping, emotional-support based coping, behavioral disengagement), terminal-illness acknowledgement, support of spiritual needs, SCID-diagnosed mental disorders, care preferences, and advance directive completion. Psychosocial factors significantly associated with positive religious coping were then included along with demographic confounds (age and ethnicity) in multivariable logistic regression models relating positive religious coping to intensive life-prolonging care. Statistical analyses were conducted using SAS statistical software, version 9.1 (Cary, NC). Statistical inferences were based on two-sided tests with p<0.05 taken to be statistically significant.
Of the 941 eligible patients, 664 (70.6%) participated. The most common reasons for nonparticipation were “not interested” (n=106), “caregiver refuses” (n=32), and “too upset” (n=21). Participants and non-participants did not differ significantly in age, gender, race/ethnicity, or years of education.
The sample for the present study was restricted to deceased participants with postmortem data and complete baseline assessments of coping. At the time of analysis 385 (58.1%) participants had died. Post-mortem data were available for 369 (95.8%) deceased patients, and complete coping assessments were present for 345 (93.5%) of these. The cohort consisted of 345 terminally ill cancer patients who died a median of 122 days after baseline assessment. Baseline characteristics of the cohort are presented in table 1.
Separately from the brief RCOPE, patients were asked about how much they relied on religion to cope with illness. 272 (78.8%) of the total study sample reported “to a moderate extent” or more, and 109 (31.6%) patients agreed with the statement “it is the most important thing that keeps you going.” Most (193, 55.9%) patients endorsed engaging in times of prayer, meditation, or religious study at least daily. Positive religious coping was significantly associated with being Black or Hispanic (p<0.001). Patients high on positive religious coping were younger, less educated, less likely to be insured, less likely to be married, and more likely to be recruited from Texas sites (all p values <0.001) than those low on positive religious coping.
Positive religious coping at baseline was significantly associated with receipt of mechanical ventilation (11.3% vs 3.6%; AOR, 2.81; 95% CI 1.03–7.69) and intensive life-prolonging care (13.6% vs 4.2%; AOR, 2.90; 95% CI, 1.14–7.35) in the last week of life, after controlling for demographic confounds. Significant associations between positive religious coping and cardiopulmonary resuscitation (7.4% vs 1.8%; OR, 4.36; 95% CI, 1.22–15.59) and ICU death (10.7% vs 4.2%; OR, 2.73; 95% CI, 1.12–6.68) became nonsignificant after adjusting for age and ethnicity.
To identify potential psychosocial variables that might confound or mediate the relationship between positive religious coping and intensive life-prolonging care, univariate logistic regressions modeled the relationships between positive religious coping and other coping mechanisms, terminal illness acknowledgment, support of spiritual needs, SCID diagnosed mental illness, support of spiritual needs, care preferences, and advance care directives measured at baseline (see table 3). Positive religious coping was significantly associated with use of negative religious coping (57.9% vs 27.5%; OR, 3.61; 95% CI, 2.30–5.67) and active coping (56.2% vs 45.5%; OR, 1.54; 95% CI, 1.00–2.35), and greater acknowledgement of terminal illness (50.6% vs 37.5%; OR, 1.71; 95% CI, 1.10–2.64), and a greater support of spiritual needs (36.2% vs 14.6%; OR 3.30; 95% CI, 1.94–5.62). Positive religious coping was significantly associated with preferring heroic measures (38.3% vs 8.6%; OR 6.60; 95% CI, 3.53–12.36) and was associated with less advance care planning in all forms: DNR order (33.9% vs 49.4%; OR, 0.53; 95% CI, 0.34–0.81), living will (29.4% vs 68.1%; OR, 0.20; 95% CI, 0.12–0.31), and HCP/DPOA (34.1% vs 63.9%; OR, 0.29; 95% CI, 0.19–0.46). Positive religious coping was not significantly associated with use of emotional support based coping, SCID diagnosed mental illness, or preference for life-extending care.
The multivariable model of positive religious coping and intensive life-prolonging care was further adjusted for psychosocial variables significantly related to positive religious coping. The relationship between positive religious coping and intensive life-prolonging care remained significant after controlling for other coping methods (AOR, 3.21; 95% CI 1.24–8.30), terminal illness acknowledgement and support of spiritual needs (AOR, 2.94; 95% CI, 1.13–7.63), and preference for heroics and completion of advance directives (AOR, 2.65; 95% CI, 1.00–7.00). Positive religious coping remained a significant predictor of intensive life-prolonging care after simultaneously adjusting for each of these psychosocial variables (AOR, 2.90; 95% CI 1.07–7.89).
This study demonstrates that most advanced cancer patients rely on religion to cope with their illness and that greater use of positive religious coping is associated with the receipt of intensive life-prolonging medical care near death. This association was not attributable to other predictors of aggressive EOL care established in the literature, 28–30 and remained after controlling for advance care planning and other plausible psychosocial confounds. These results suggest that relying upon religion to cope with terminal cancer may contribute to receiving aggressive medical care near death.
To our knowledge this is the first study to examine the influence of any religious factor on medical care received near death, and it is novel in demonstrating that positive religious coping is associated with actual receipt of aggressive EOL care. Positive religious coping was very commonly endorsed within our sample, consistent with other studies that demonstrate it to be the normative mode of religious coping within predominantly Christian patient samples3, 4, 19 (pargament 2004, anos). Adjusting for negative religious coping did not alter the association of positive religious coping with intensive life-prolonging care, suggesting that these findings might not be attributable to religious struggle at the EOL.
In the absence of preexisting outcome data, previous studies support an association of several religious measures and preference for medically aggressive EOL care.1, 10, 31, 32 In a study of 68 ethnically diverse advanced cancer patients, belief in miracles, seeking guidance from God, and spiritual coping were associated with a preference for resuscitation, ventilation, and hospitalization in near-death scenarios.10 In a study from the trauma literature, over half of the respondents believed that God could heal a critically injured patient even when the physician stated that medical futility had been reached9. Religious copers may choose medically aggressive therapies because they believe God could use the therapy to provide healing. Alternatively, patients may seek aggressive therapies because they hope that God might miraculously intervene while the patient’s life is being prolonged through intensive medical care.
Sullivan et al31 found that religious cancer patients were less likely to understand the definition of a DNR order and were more likely to think a DNR order was morally wrong. Positive religious copers in the CwC sample were less likely than nonreligious copers to have a DNR order or other forms of advance care planning; however, these differences were largely attributable to the effect of race/ethnicity (analysis not presented). Indeed, lower rates of advance care planning did not mediate the relationship between positive religious coping and intensive life-prolonging care. The increased rate of intensive life-prolonging care among religious copers was also not mediated by baseline preference for aggressive care, suggesting a more complex relationship between religious coping and EOL care outcomes. Religious coping may influence medical decision-making rather than directly affecting treatment preferences or orientation toward care. Religious copers may decide to undergo therapies with high risks and uncertain benefits, because they trust that God could heal them through the proposed treatment.
Intrinsic to positive religious coping is the idea of collaborating with God to overcome illness and positive transformation through suffering. Sensing a religious purpose to suffering may enable patients to endure more invasive and painful therapy at the EOL.11, 12 Alternatively, religious copers might feel they are abandoning a spiritual calling as they transition from “fighting cancer” to accepting the limitations of medicine and preparing for death. Religious patients might thus equate palliative care to “giving up on God [before he has] given up on them.”33 Qualitative studies commonly report spiritual reasons for preferring life-sustaining treatments, including a belief that only God knows a patient’s time to die.11, 34, 35 Finally, high rates of intensive EOL care among religious copers may be attributable to religiously-informed moral positions that place high value on prolonging life.
Taken together, these results highlight the need for clinicians to recognize and be sensitive to the influence of religious coping on medical decisions and goals of care at the EOL. When appropriate, clinicians might include chaplains or other trained professionals (e.g., liason psychiatrists36 [cite Curlin]) to inquire about religious coping during ICU family meetings and EOL discussions occurring earlier in the disease course37 (cite Alexi). Because aggressive EOL cancer care has been associated with poor quality of death and caregiver bereavement adjustment37 [Alexi], intensive EOL care might represent a negative outcome for advanced cancer patients who rely on their religious faith to cope. These findings merit further discussion within religious communities, and consideration from those providing pastoral counsel to terminally ill cancer patients.
Clear associations are often elusive in religiousness/spirituality research because of the complex interactions between religious and other psychosocial factors38. Because the CwC study included comprehensive assessments of psychosocial measures, we were able to control for demographic confounds as well as more subtle potential explanatory effects. The effects of religious coping may have been confounded by other coping mechanisms; however, controlling for common non-religious coping styles did not alter its relationship with EOL care. Cancer patients with unrealistically optimistic expectations of survival prefer and receive more aggressive EOL care.25, 30 We attempted to account for this by controlling for acknowledgement of terminal illness, which did not alter the relationship between religious coping and the primary outcome. Failure to address the spiritual needs of terminal cancer patients could conceivably contribute to spiritual crisis at the EOL, thereby leading to more aggressive care. Similarly, adjusting for support of spiritual needs did not alter the main findings. Research is needed to determine the mechanisms by which religious coping might influence EOL care preferences, decision making, and ultimate care outcomes.
Strengths of this study include ethnic and socioeconomic diversity among participants, use of validated surveys, and its prospective design. The brief RCOPE is a well-validated research tool that enabled empiric observations about a complex psychosocial construct. Nevertheless, clinicians should appreciate that the effects of religious coping are likely to be moderated by the environment and belief system from which they arise. Our findings should not be misinterpreted as denying the experience of many patients who find peaceful acceptance of death and pursue comfort-centered care because of their religious faith. Although religious coping is a theoretically appealing measure of functional religiousness, we cannot say that positive religious coping rather than other religious factors (e.g. religiously based morals) completely accounts for the associations observed. Given the observational nature of this study, other hidden confounds are possible. Because our study sample was predominantly Christian, the applicability of our findings to non-Christian populations is uncertain. Religious coping is common among patients with a variety of illnesses,2 but attitudes toward EOL care vary substantially across diagnoses with intensive EOL care being much more prevalent among non-cancer populations.2, 29 Future studies are needed to determine the extent to which these findings apply to patients with other terminal illnesses.
Despite these limitations, this study demonstrates that positive religious coping is associated with receipt of more intensive life-prolonging medical care at the EOL. These results suggest that clinicians should be attentive to religious methods of coping as they discuss prognosis and treatment options with terminally ill patients.
Author Contributions: Dr. Prigerson had full access to all of the data in the study and takes responsibility for the integrity of the data and accuracy of the data analysis.Study concept design: Phelps, Maciejewski, Nilsson, Balboni, and Prigerson
Analysis and interpretation of data: Phelps, Maciejewski, Nilsson, and Prigerson
Drafting of the manuscript: Phelps, Prigerson
Critical revision of the manuscript for important intellectual content: Phelps, Maciejewski, Nilsson, Balboni, Wright, Trice, Paulk, Block, Schrag, Peteet, Prigerson.
Statistical analysis: Maciejewski, Nilsson, and Prigerson
Study supervision: Prigerson and Paulk
Administrative, technical, or material support: Prigerson