Association Between Self-reported Importance of Religious or Spiritual Beliefs and End-of-Life Care Preferences Among People Receiving Dialysis

IMPORTANCE Although people receiving maintenance dialysis have limited life expectancy and a high burden of comorbidity, relatively few studies have examined spirituality and religious beliefs among members of this population. OBJECTIVE To examine whether there is an association between the importance of religious or spiritual beliefs and care preferences and palliative care needs in people who receive dialysis. DESIGN, SETTING, AND PARTICIPANTS A cross-sectional survey study was conducted among adults who were undergoing maintenance dialysis at 31 facilities in Seattle, Washington, and Nashville, Tennessee, between April 22, 2015, and October 2, 2018. The survey included a series of questions assessing patients’ knowledge, preferences, values, and expectations related to end-of-life care. Data were analyzed from February 12, 2020, to April 21, 2021. EXPOSURES The importance of religious or spiritual beliefs was ascertained by asking participants to respond to this statement: “My religious or spiritual beliefs are what really lie behind my whole approach to life.” Response options were definitely true, tends to be true, tends not to be true, or definitely not true. MAIN OUTCOMES AND MEASUREMENTS Outcome measures were based on self-reported engagement in advance care planning, resuscitation preferences, values regarding life prolongation, preferred place of death, decision-making preference, thoughts or discussion about hospice or stopping dialysis, prognostic expectations, and palliative care needs. RESULTS A total of 937 participants were included in the cohort, of whom the mean (SD) age was 62.8 (13.8) years and 524 (55.9%) were men. Overall, 435 (46.4%) participants rated the statement about religious or spiritual beliefs as definitely true,


Introduction
Spirituality, defined as "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," 1(p887) is an important dimension of overall wellness. Among those with underlying health conditions, spirituality has been associated with existential wellness and with the psychological and material experiences of illness. 2 Spirituality can help patients cope with serious illness and has been associated with better quality of life, whereas spiritual distress can contribute to feelings of hopelessness and depression. [3][4][5][6] An understanding of patients' religious and spiritual beliefs can be especially helpful in planning for serious illness, dealing with health challenges, and negotiating difficult treatment decisions at the end of life. 7,8 Spiritual assessment is a core domain of palliative care, a medical specialty that supports people with serious illness. 9 Although people receiving maintenance dialysis have lower life expectancy and a higher burden of comorbidity compared with those with normal kidney function, relatively few studies have examined spirituality and religious beliefs among members of this population. Previous studies on this topic have suggested that patients with advanced kidney disease have a substantial number of unmet spiritual needs [10][11][12] and that higher levels of spirituality are associated with better quality of life. 13 However, these previous studies offer few insights into the role of religious or spiritual beliefs in shaping patients' approach to serious illness. Among patients with cancer or chronic illness, spirituality or reliance on religious coping has been associated with a greater desire for life-extending interventions (particularly among racial/ethnic minority groups), [14][15][16] a lower likelihood of depression, 17 a lower overall symptom burden, 18 and less engagement in advance care planning. 19 In this study, we aimed to examine whether there is an association between the importance of religious or spiritual beliefs and care preferences and palliative care needs in people who receive dialysis. We hypothesized that most patients receiving maintenance dialysis would view religious or spiritual beliefs as important and that those for whom these beliefs are more important would be more likely to value life extension over relief of pain and discomfort, to favor aggressive lifeprolonging treatments, and to have more optimistic prognostic expectations and would be less likely to engage in advance care planning and to have unmet palliative care needs.
October 2, 2018. The survey included a series of questions assessing patients' knowledge, preferences, values, and expectations related to end-of-life care. To be eligible to participate in the survey, patients had to be at least 21 years of age, sufficiently fluent in English to complete the survey, and cognitively able to provide written informed consent. Study staff consulted with dialysis facility charge nurses to identify patients who met the eligibility criteria, and then approached eligible patients during their dialysis sessions to invite them to participate in the study. This process yielded a pragmatic consecutive sample of eligible patients who were receiving maintenance dialysis at participating facilities at the time of survey administration. Most patients were receiving in-center hemodialysis, but a small convenience sample was receiving peritoneal dialysis. Participants could choose to complete the paper survey themselves or to have a study coordinator record their verbal responses.
After an initial pilot phase, 1431 eligible patients were invited to participate in the survey, of whom 997 (69.7%) provided written informed consent and completed the survey. We excluded those who were missing information on the importance of religious or spiritual beliefs or any of the self-reported baseline characteristics that were included in the multivariable analyses, which yielded an analytic cohort of 937 participants or 65.5% of those who were invited to participate.

Exposure, Covariates, and Outcomes
The importance of religious or spiritual beliefs was ascertained using a single item from the Duke University Religion Index. 24 Study participants were asked to respond to the following statement: "My religious or spiritual beliefs are what really lie behind my whole approach to life." Possible responses included definitely true, tends to be true, tends not to be true, and definitely not true. 24 Multivariate analyses included the following self-reported participant characteristics ascertained at the time of survey administration that we postulated might be associated with the importance of religious or spiritual beliefs: age (<60, 60-74, or Ն75 years), sex, self-reported race with response options of home or home of a relative or friend or other setting; (7) preference for decision-making role, with response options of patient-centered, shared, or physician-centered; (8) previous thoughts or discussion about stopping dialysis; (9) previous thoughts or discussion about hospice; and (10) prognostic expectations, with response options of less than 5, 5 to 10, or more than 10 years or not sure ( Table 1). We also examined the association of self-reported importance of religious or spiritual beliefs with 18 different palliative care needs. 11

Statistical Analyses
We used a χ 2 test to describe the characteristics of participants with differing responses to the statement about religious or spiritual beliefs. We used logistic and multinomial regression as appropriate to estimate odds ratios for the association of the exposure variable with each outcome after adjustment for the aforementioned covariates and clustered by dialysis facility. The results of adjusted analyses are presented herein as estimated probabilities with 95% CIs, which were based on fixing the value of the adjustment variables at the mean value for the analytic cohort. The statistical significance of the adjusted associations with each outcome was assessed by testing for linear trends across the 4 categories of the exposure variable. Analyses for individual outcomes were restricted to participants with complete information on the relevant outcome, which ranged from 915 to 937 participants across outcome measures ( Table 2 and Table 3).

Study Participants
Of the 937 USTATE participants included in the analytic sample, the mean (SD) age was 62. 8   for a longer time (1-5 or >5 years), and those who were recruited from Nashville, Tennessee, were more likely to agree that their spiritual beliefs were important to them (Table 1). Participants who selfidentified as Christian were more likely and those who reported no religious affiliation were less likely to agree that religious or spiritual beliefs were important to them.

Association of the Importance of Religious or Spiritual Beliefs With Domains of End-of-Life Care
In analyses that were adjusted for age group, sex, race, ethnicity, self-rated health status, highest

Association of Importance of Religious or Spiritual Beliefs With Palliative Care Needs
In adjusted analyses, participants for whom religious or spiritual beliefs were important were no less

Discussion
To our knowledge, this study is the first to describe the association between the self-reported importance of religious or spiritual beliefs and knowledge, expectations, values, and preferences related to serious illness and palliative care needs of a cohort of patients who were receiving maintenance dialysis. Religious or spiritual beliefs were at least of some importance to most participants (70.1%), a finding that is consistent with results from previous work in various other populations with chronic illness, among whom the proportion who identified as religious or spiritual has ranged from 19% to 84%. 4,12,14,25,26 As we hypothesized and as consistent with the results of studies conducted in other populations, 14,19 the USTATE participants for whom religious or spiritual beliefs were more important were more likely to favor the use of life-extending interventions, such as CPR and mechanical ventilation. These respondents were also less likely to have ever thought or spoken about stopping defined as a perception of the importance of faith and the role it plays in coping with kidney disease, were high. Along with results from these earlier studies, the findings in this study suggest that an integrative approach to care that addresses the religious and/or spiritual beliefs of people who receive dialysis may be particularly beneficial for women and Black individuals. In addition, these findings suggest that the value of integrating spiritual beliefs into the care of people who receive dialysis may be greater for older individuals and those who have been receiving dialysis for a longer time and may vary geographically.

Limitations
This study has several limitations. First, the study question examined only the importance of religious or spiritual beliefs and did not explore the more specific concepts of spiritual well-being and distress, nor did the question distinguish between spirituality and religious beliefs. Although often conflated with spirituality, religion is a distinct concept, defined as an "organized system of beliefs, practices, and symbols designed to facilitate closeness to the transcendent or the Divine and foster an understanding of one's relationship and responsibilities with others living in a community." 8(p429) The results of this study do not account for the possibility that these separate constructs may have distinct associations with the outcome measures we evaluated. Second, the exclusion criteria and the composition of the cohort (predominantly English-speaking individuals who were receiving in-center hemodialysis at nonprofit facilities in Seattle, Washington, or Nashville, Tennessee) may limit the generalizability of the findings to other segments of the dialysis population. Sizeable differences in the importance of religious or spiritual beliefs between USTATE participants who were recruited from these 2 metropolitan areas suggest the potentially limited generalizability of the findings to other