Abstract
Abstract
Background:
Palliative care (PC) programs utilize chaplains to address patients' spiritual care needs; however, there is no comprehensive description of chaplaincy in PC programs nationally.
Objective:
To describe chaplains working in PC across the United States, including their integration on the PC team and visit content.
Design:
National online survey conducted February–April 2015.
Subjects:
We invited participation from hospital-based chaplains belonging to four national professional chaplain associations who spent 15% or more of their working hours with PC teams.
Measure(s):
We developed a 41-item survey to investigate main outcomes of chaplain demographics, practice information, integration into the PC team, and visit content.
Results:
531 valid responses were received. We report on respondents who were full-time chaplains (n = 382). Almost half were women (46%), and the majority was Protestant (70%). The average number of PC patients seen per day was 5.2 (SD = 3.5, range 1–30). Half (52%) reported frequently participating in PC rounds. Primary chaplain activities were relationship building (76%), care at the time of death (69%), and helping patients with existential issues or spiritual distress (49%). Over half (55%) reported addressing goals of care 60% of the time or more.
Discussion:
This survey provides the first description of chaplains working in PC across the United States. We describe chaplains' critical role in attending to relationship building, care for the dying, and goals of care conversations. Our results highlight how the chaplains' level of involvement in PC affects the content of their visits. Our study suggests that when chaplains are more involved in PC teams, they provide more comprehensive support to PC patients and their families.
Introduction
P
While there are some data on chaplains 5 and PC chaplains in the pediatric setting, 6 there are no data describing chaplains working with adults receiving PC. Our purpose was to conduct a comprehensive survey of hospital-based chaplains working in PC across the United States. We describe their demographics and practice information, level of integration in PC programs, and content of their visits. In addition, we describe how chaplains' level of involvement in PC affects their responsibilities, integration, and visit content. These data provide a foundation for future research on chaplains working in PC and spiritual care among seriously ill patients.
Methods
Sampling frame
Invitations to participate in our online survey were sent to the members of four major associations of professional chaplains in the United States: the Association of Professional Chaplains (APC); the National Association of Catholic Chaplains (NACC); the National Association of Veterans Affairs Chaplains (NAVAC); and the Neshama: Association of Jewish Chaplains (NAJC). The APC and NACC, who endorsed the survey, are the largest professional chaplain organizations in the United States with 5300 and 2280 members, respectively. NAVAC has 579 members, and NAJC has 584. Inclusion criteria were employment in a hospital and spending 15% or more of professional time in PC, including PC clinical, PC teaching, and PC administrative hours. This study was approved by the Yale University Human Investigation Committee and the Rush University Committee on Human Research.
Survey development
We developed survey items based on a literature review of chaplain responsibilities and visit content, as well as PC chaplaincy. We grouped 41 items into eight sections: Consent and qualifying questions (3 items), Hospital and PC Program Data (5 items), Chaplain Involvement in PC (7 items), Chaplain Practices (7 items), Chaplain Distress/Satisfaction (3 items), Chaplain Self-Care (3 items), Chaplain Training (10 items), and Chaplain Demographics (3 items). Item format included multiple choice and free-text responses. Multiple choice answers assessing frequency were given in a 5-point Likert Scale as never/rarely (0%–14%), occasionally (15%–40%), about half the time (41%–60%), often (61%–85%), and frequently/always (86%–100%). We pilot tested initial drafts of the survey with three PC chaplains and one oncology chaplain and made minor revisions based on their feedback. In pilot tests, it took respondents ∼20 minutes to complete the survey.
Study procedures
The survey was open for eight weeks, February–April, 2015. We administered the survey using Survey Monkey, an electronic survey portal. In the recruitment e-mail, we sent a link to the survey and a brief description of its purpose. Before beginning the survey, respondents were prompted to provide consent by responding “yes” or “no” to the question of whether they had read the consent for participation and were providing consent. Following consent, respondents completed two questions to screen for meeting inclusion criteria. First, respondents were asked if they worked in a hospital, agency, or both. Second, respondents were asked, “In an average week, what percentage of working hours is dedicated to PC work (including any direct care with patients/loved ones who are also being seen by the PC program at your institution, and/or teaching or administrative work for the PC program)?” Chaplains who declined to consent, worked only in an agency, or spent less than 15% of working hours with PC received a thank you message and were not asked any further questions. Chaplains who met inclusion criteria were able to navigate the remaining sections of the survey.
Statistical analysis
We used descriptive statistics to describe study respondents and their spiritual care activities. To simplify the presentation of our findings, we collapsed data from similar categories. We grouped respondents into three levels of involvement in PC: occasional (15%–40% of their time was dedicated to PC), often (41%–85% of their time was dedicated to PC), and always (86%–100% of their time was dedicated to PC). We similarly collapsed chaplain engagement in particular activities into three groups: rare (0%–14%), sometimes (15%–60%), and frequent (61%–100%). We used the chi-square statistic to test differences in chaplain involvement in specific spiritual care activities across the three levels of chaplain involvement in PC. We used ANOVA to test differences in the number of PC patients seen per day across the levels of chaplain involvement in PC.
Results
Study respondents
There were 1007 survey respondents for an estimated response rate of 11.5%. We excluded 225 respondents who did not meet inclusion criteria. We also excluded 251 respondents whose surveys were substantially incomplete. We did not collect data to describe why these respondents did not complete the survey. One possible explanation is that participants did not read the instructions and upon reading the survey, they realized the survey did not apply to them. Valid responses were received from 531 chaplains. In this report, we describe the work of 382 chaplains who reported working full-time as chaplains and were involved in PC 15% or more of their working hours. We do not describe part-time chaplains for two reasons. First, among the part-time chaplains there was a wide range in the proportion of time worked as a chaplain (<0.10–0.90) and most (61%) worked half-time or less. Second, we assumed that part-time chaplains had fewer opportunities to be involved in many of the activities we assessed.
Chaplain demographics and practice information
We provide a sample description in Table 1. Almost half of the chaplains were women (46%), and the majority was White (89%) and Protestant (70%). Most (70%) were Board Certified Chaplains (BCCs). BCCs have completed a three-year Masters of Divinity (MDiv) or equivalent, four units (∼12 months) of Clinical Pastoral Education, and have demonstrated competency in the following four areas: (i) theory of pastoral care, (2) identity and conduct, (3) pastoral competencies, and (4) professional competencies. Most respondents (61%) were certified for more than five years and nearly two-thirds (64%) had been working in PC for five years or less. We present chaplains' practice information in Tables 2 and 3. The average number of PC patients seen per day was 5.2 (SD = 3.5), but the range was considerable (1–30).
BCC, board certified chaplain; PC, palliative care.
ANOVA F = 35.0, p < 0.001. Post hoc test: occasional is different from often or frequent; often and frequent are not different.
Values for frequency of engagement are: rarely (0%–14%), sometimes (15%–60%), and frequently (61%–100%).
Chaplains who spent more time in PC reported seeing more PC patients per day (7.2, SD = 3.3). Respondents reported their involvement in staff support, bereavement follow-up, and educational and administrative responsibilities. A large proportion (81%) reported involvement in staff support at least sometimes. Approximately half reported at least sometimes being involved in bereavement follow-up (55%), educational (51%), and administrative activities (50%). Chaplains who spent more of their time in PC reported significantly greater involvement in staff support, bereavement follow-up, and administrative responsibilities.
Integration into the PC team
We show chaplains' integration into a PC team, including chaplain funding source, visit referral source, and participation in family meetings and PC rounds, in Table 4. Funding for most chaplains came from the chaplaincy department; only 7.1% reported being paid completely and 4.5% partly by the PC program. Chaplains who were always involved in PC were five times more likely to have their salary completely paid for by the PC program than occasionally involved chaplains. Fifty-nine percent reported their visits were frequently initiated by referrals from the PC team. Half (52%) reported frequently participating in PC rounds. Approximately a third (32%) reported frequently participating in the family meetings held by their PC team. Chaplains who were always involved in PC reported significantly greater involvement in rounds and family meetings.
Values represent the number (percent) of chaplains within groups who report each activity 61% of the time or more.
Visit content
Visit content included items that described the extent to which chaplains engaged in four types of activities during their visits with PC patients and their loved ones: chaplain craft, addressing death/dying, addressing goals of care, and addressing existential and spiritual distress.
Chaplain craft
We defined chaplain craft as the primary activities of chaplaincy, such as building relationships, providing ritual support (e.g., prayer), introducing spiritual care, and connecting patients with communities of faith (Table 5). The most frequent of these activities were building relationships (76%) and providing ritual support (64%); however, the level of involvement in PC impacted these activities. Chaplains who were always involved in PC were more likely to report that they visited patients to build relationships (87%) than chaplains who were only occasionally involved in PC (68%).
Values represent the number (percent) of chaplains within groups who report each activity 61% of the time or more.
Death and dying
Sixty-nine percent of respondents reported that attending to death and dying was the second most frequent content of their visits (Table 5); however, chaplains who were always involved in PC were more likely to process questions and issues around death and dying (64%) than those who were only occasionally involved in PC (48%).
Goals of care conversations
Over half of the chaplains (55%) reported that they addressed goals of care 61% of the time or more (Table 5). Chaplains who were always involved in PC were more likely to engage in goals of care discussions (70%) than chaplains who were only occasionally involved (43%). Chaplains always involved in PC were also nearly twice as likely to facilitate communication between patients, the patients' family, and the healthcare team (65%) than occasionally involved chaplains (34%).
Existential and spiritual distress
Chaplains reported that conversations about existential questions and spiritual distress were a common part of their spiritual care (Table 6). Almost all of the chaplains reported at least sometimes discussing existential questions or spiritual distress (97%) or the patients' illness or hospitalization (94%) during their patient visits. Chaplains with greater involvement in PC were more likely to report such conversations. More than three-fourths of the chaplains also reported at least sometimes discussing the meaning of suffering, “Why me?”(82%) and “Why God allows this to happen to me?” (84%). Almost 75% of the chaplains reported at least sometimes talking with patients about anger with God. Two-thirds of the chaplains reported at least sometimes discussing loss of faith (67%) or loss of a community of faith with patients (66%).
Values for frequency of engagement are: rarely (0%–14%), sometimes (15%–60%), and frequently (61%–100%).
Discussion
In this study, we have created the first profile of chaplains working in PC across the United States. We have described their level of involvement in PC, their daily responsibilities, their integration in PC programs, and the content of their visits. Our study found that chaplains working in PC were providing care for the dying and their families, as well as spiritual assessment, including assessment of spiritual and existential distress, and spiritual care activities that are included in the National Consensus Project guidelines. 4 Our study indicates that there are important differences between chaplains who occasionally serve PC and chaplains who exclusively serve PC. Chaplains who always serve PC are more likely to build relationship, care for the dying, and attend to goals of care than their counterparts who serve PC only occasionally.
Previous research has shown that chaplains frequently engage in relationship building and care for the dying and grieving. In a small study three PC chaplains were paged at random intervals six times per day for 28 days and asked to describe their activity at the time. 7 The two most frequent direct care activities reported were “establishing a relationship of care and support” (21% of the pages) and “journeying with someone in the grief process” (19% of the pages). Similarly our study found that the most frequent content of chaplain visits was building relationships (76%) and care for the dying or deceased patient/family (69%). Our study confirmed previous research and further showed that chaplains who were more involved in PC were more likely to attend to these two activities than chaplains who were less involved in PC.
Our study results also reflect previous research on the extent to which PC patients report experiencing spiritual distress or concern. In a study of 91 PC patients in an outpatient PC clinic, Delgado-Guay et al. found that 44% of the patients reported spiritual pain. 8 In a study of 69 outpatients with advanced cancer receiving palliative radiation, Winkelman et al. found that 86% of the patients reported at least one spiritual concern. 9 Our data show that in their visits with patients, PC chaplains address key elements of spiritual distress such as loss of faith, loss of faith community, wondering “why God would allow this to happen to me,” anger with God, and questioning the meaning or purpose of suffering.
While relationship building, care of the dying, and attending to spiritual distress are traditional chaplain activities, we were impressed with the finding that over half of the chaplains working in PC are frequently involved in addressing goals of care with patients and their family. Formal goals of care conversations are often conducted by physicians; however, Massey et al. reported the most frequent direct care activity among PC chaplains to be “aligning care plan with patient's values” (26%). 7 Furthermore, in a study of ICU chaplains, Johnson et al. found that chaplains “discussed patient's wishes for end-of-life care” in nearly half of their encounters (45.4%). 10 This activity was significantly associated with higher overall family satisfaction scores and higher satisfaction with treatment decision-making scores. 10
In our study we found that the greatest difference in practice between chaplains who only occasionally serve PC and chaplains who always serve PC is the extent to which chaplains address goals of care. Chaplains who always serve PC are far more likely to address goals of care (70%) than chaplains who occasionally serve PC (43%). They are also twice as likely to facilitate communication between patients, family, and the healthcare team (65%) than occasionally involved counterparts (34%). Our results add to emerging evidence that chaplains play an important role in helping patients and their loved ones make significant decisions about end-of-life treatment.
The importance of these findings is underscored by a recent report done by Ernecoff et al. about the extent to which religion and spiritual concerns were ignored in 249 conversations with family surrogates of ICU patients. 11 Despite the fact that over three-fourths of the family surrogates reported that religion or spirituality were fairly or very important in their life, religious/spiritual considerations were raised in only 16% of these family meetings. In 65% of the meetings where they were raised they were initiated by the family and in one-third of those meetings the medical team changed the subject. It is notable that chaplains were present in only 2 of these 249 family meetings.
In light of the Ernecoff study and our findings, PC programs occasionally making use of unit chaplains or chaplains assigned to other areas of the hospital should consider increasing chaplain involvement in PC. Our findings suggest that by exclusively utilizing one chaplain rather than occasionally involving several chaplains, PC programs will increase spiritual care for the dying, relationship building, and engagement in and presence at key goals of care discussions.
Our results should be interpreted with some limitations in mind. There is neither a master list of healthcare chaplains in general nor of chaplains working in PC in the United States. By soliciting respondents through four major professional chaplaincy organizations, we were more likely to reach board-certified chaplains involved in professional chaplaincy and less likely to reach chaplains who are not BCC and who have no involvement in professional chaplaincy. However, this sampling frame enabled us to solicit participation from the vast majority of professional chaplains in the United States. Also due to our sampling frame, we were unable to estimate how many chaplains working in PC did not respond to the survey, so we were unable to calculate a precise response rate. In addition, while our survey was grounded in the literature and pilot tested, the reliability of our survey items is unknown. Although the survey appeared to have face validity, we do not know how the same item might have been interpreted by different respondents. Our results are also limited by self-reporting; respondents may have over- or underreported their activities. Despite these limitations, our data provide an important description of chaplains working in PC in the United States and their activities.
This study indicates the need for additional research about PC chaplains and their contributions to patient and family care. As noted, we relied on chaplains' self-report of their activities. Future investigators should compare these self-reports to documented care activities in patients' medical records. We found evidence that chaplains working in PC were frequently engaged in addressing issues of existential and spiritual distress. Investigators should examine the extent to which the content of chaplain visits is aligned with and effectively addresses the existential, religious, and spiritual needs of PC patients and their families. 1 Another important line of inquiry is to examine how other members of the PC team perceive PC chaplain activities and to explore their understanding of what chaplains do.
Conclusions
This national survey provides the first comprehensive description of chaplains working in PC and the activities in which they are involved. Our results highlight chaplains' critical role in attending to relationship building, care for the dying, and goals of care conversations. With greater integration of chaplains into PC teams, chaplains' roles are expanding to provide more comprehensive support for the needs of patients and families at the end of life.
Footnotes
Acknowledgments
The authors thank the four national associations of chaplains who distributed the survey: the Association of Professional Chaplains (APC); the National Association of Catholic Chaplains (NACC); the National Association of Veterans Affairs Chaplains (NAVAC); and the Neshama: Association of Jewish Chaplains (NAJC).
Author Disclosure Statement
No conflicts of interest or potential conflicts of interest were reported.
