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Palliative and Supportive Care
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Original Article
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Palliative
and Supportive Care
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Abstract
Objectives. Advance care planning (ACP) conversations require the consideration of deeply
held personal values and beliefs and the discussion of uncertainty, fears, and hopes related
to current and future personal healthcare. However, empirical data are limited on how
such spiritual concerns and needs are supported during ACP. is study explored board-
certied healthcare chaplains’ perspectives of patients’ spiritual needs and support in ACP
conversations.
Methods. An online survey of 563 board-certied chaplains was conducted from March to July
2020. e survey included 3 open-ended questions about patients’ hopes and fears and about
how the chaplains addressed them during ACP conversations. Written qualitative responses
provided by 244 of the chaplains were examined with content analysis.
Results. e majority of the 244 chaplains were White (83.6%), female (59%), Protestant
(63.1%), and designated to one or more special care units (89.8%). Major themes on patients’
hopes and fears expressed during ACP were (1) spiritual, religious, and existential questions;
(2) suering, peace, and comfort; (3) focus on the present; (4) hopes and fears for family; and
(5) doubt and distrust. Major themes on how chaplains addressed them were (1) active listen-
ing to explore and normalize fears, worries, and doubts; (2) conversations to integrate faith,
values, and preferences into ACP; and (3) education, empowerment, and advocacy.
Signicance of results. ACP conversations require deep listening and engagement to address
patients’ spiritual needs and concerns – an essential dimension of engaging in whole-person
care – and should be delivered with an interdisciplinary approach to fulll the intended
purpose of ACP.
Introduction
Advance care planning (ACP), according to an international multidisciplinary Delphi panel, is
dened as “a process that supports patients at any age or state of health in understanding and
sharing personal values, life goals, and preferences regarding future medical care” (Sudore et al.
2017, p. 826). Over the years, the focus of ACP has shied from the narrow goal of comple-
tion of advance directives to preparing patients and surrogates for communication and medical
decision-making (Sudore et al. 2022), with the general consensus that ACP is a critical element
of high-quality care that facilitates respecting and honoring patients’ autonomy and supports
patients’ families (Jimenez et al. 2018; McMahan et al. 2021). For those with serious illnesses
that come with a high risk of mortality and burden for function or quality of life, ACP can
elicit serious conversations about illness that help to align patients’ values, goals, priorities, and
preferences with goals of care so that care can become goal concordant (Jacobsen et al. 2022).
ere are, however, several notable psychosocial barriers to engaging in ACP because
it is a process that addresses complex, weighty topics. International studies of patients’
perceptions of ACP have highlighted a sense of optimism, fears of death and dying, and
worries about family members as main issues that prevent individuals from readily engag-
ing in conversations about goals of care (Bernard et al. 2020; Cheung et al. 2020; Jimenez
et al. 2018). Some patients believe they are “too young” or “not sick enough” to partake
in ACP, whereas others are daunted by the emotional diculty of such discussions. ey
worry that the content of ACP conversations may place a burden on family members and
loved ones, straining close relationships. Many of these barriers are linked to spiritual con-
cerns, with spirituality here dened as “the way individuals seek and express meaning and
purpose and the way they experience their connectedness to the moment, to self, to others,
https://doi.org/10.1017/S1478951522001560 Published online by Cambridge University Press
et al.
to nature, and to the signicant or sacred” (Puchalski et al. 2009,
887). ACP oen requires contemplating what is unknown and
uncertain, accompanied by naturally occurring fears surrounding
the end of life. Yet it also involves considering what is personally
meaningful to the patient in order to inform treatment decisions
consistent with the patient’s values and beliefs. Accordingly, impor-
tant facilitators of ACP amid barriers include a strong patient–
provider relationship that is rooted in trust, involvement of loved
ones, conversations about goals of care, and proper timing (Jimenez
et al. 2018; Oyedeji et al. 2020).
Given the particularly important role of providers in initiating
and facilitating ACP, various national organizations and consen-
sus statements call for ACP facilitation with interdisciplinary care
models (Institute of Medicine 2015; National Consensus Project
for Quality Palliative Care 2018). Providers indicate that discus-
sions would be most eective with an interprofessional approach
(Institute of Medicine 2015; Kwak et al. 2022; National Consensus
Project for Quality Palliative Care 2018). As key members of inter-
disciplinary care teams, board-certied healthcare chaplains are
specialists who have a master’s degree in a spiritual care-related
eld and have been clinically trained in chaplaincy. Healthcare
chaplains communicate with both patients and their families by
assessing their spiritual and cultural contexts, needs, hopes, and
resources, with careful consideration of their unique beliefs. ese
abilities help to make chaplains skilled in navigating matters that
involve spiritual care, including engagement in ACP conversations
(Lutz et al. 2018). Indeed, a study documented that chaplains were
able to facilitate ACP conversations eectively in outpatient set-
tings (Lee et al. 2018). Another study of hospital-based chaplains
found that over half (55%) chaplains addressed goals of care 60%
of the time or more in their practice (Jeuland et al. 2017). A more
recent survey of 585 board-certied chaplains in the US has found
that over 90% saw ACP as an important part of their role and over
70% felt condent or very condent in completing various ACP
tasks (Kwak et al. 2021).
Nevertheless, despite the importance of exploring and address-
ing spiritual concerns and needs during conversations about
ACP and serious illness, and despite the fact that chaplains rou-
tinely engage in these conversations with patients, there is lim-
ited empirical data on how patients’ spirituality is addressed
during these conversations. To address this knowledge gap, the
present study explored the spiritual concerns and needs that
chaplains observe and address during ACP conversations with
patients.
Methods
Design
An online survey of board-certied chaplains was conducted to
examine the role of board-certied healthcare chaplains in con-
versations about goals of care, decision support, and spiritual care
for patients across various healthcare settings (Kwak et al. 2021).
A pragmatic perspective guided the survey design (Hanson et al.
2005). Pragmatists value both objective and subjective knowledge,
and this perspective is considered as an appropriate philosophi-
cal basis of mixed methods research (Hanson et al. 2005). For the
present study, there were 2 main questions: (1) What are the spir-
itual needs and concerns of patients expressed during ACP? (2)
How do chaplains address patients’ spiritual needs and concerns
during ACP? e study protocol was reviewed and approved by the
BLINDED Institutional Review Board.
Population, sample, and recruitment
e target population was board-certied healthcare chaplains in
the US. Using convenience sampling, healthcare chaplains were
recruited from 3 US chaplaincy organizations: the Association
of Professional Chaplains, the National Association of Catholic
Chaplains, and the Spiritual Care Association. ese are large
North American certifying bodies for chaplains with a formal sub-
specialty certication in hospice and palliative care. e survey
was available online from March 16 through July 31, 2020. e 3
organizations distributed information about the survey primarily
through emails sent from their national oces in March 2020 to
their members; reminder emails to complete the survey were sent
to members at the end of June 2020. e emails about the study
described its purpose and the online survey method, and they pro-
vided the principal investigator’s contact information and a link to
the online survey site. e survey site stated that participation was
voluntary and anonymous and that submission of the online survey
signied consent to participate. Respondents were not compen-
sated for their time. ey were asked to self-report whether they
were board-certied chaplains or not before they could start the
survey. e nal sample included 563 board-certied healthcare
chaplains.
Data collection
e survey was cross-sectional, intended to take about 15–30 min-
utes to complete. It included closed- and open-ended questions,
and it was conducted with Qualtrics soware. e study team
developed and piloted the survey’s questions for demographic and
professional background characteristics (e.g., employment status,
chaplaincy designation, and practice setting), the types of patients
whom the chaplains served (e.g., the percentage of patients with
serious life-threatening illnesses), and roles and experiences in
facilitating ACP. e survey oered Sudore et al.’s (2017) deni-
tion of ACP as “a process that supports patients at any age or
state of health in understanding and sharing personal values, life
goals, and preferences regarding future medical care” (p. 826).
ree open-ended questions about ACP were asked: “What are
the most common fears, worries, or doubts you hear your patients
express during ACP conversations?” “What are the most com-
mon hopes your patients express during ACP conversations?” and
“How do you address these fears, worries, and doubts during ACP
conversations?”
Data analysis
e sample’s overall characteristics and relationships among key
themes (e.g., frequency distributions and percentages for cate-
gorical variables; means and standard deviations for continuous
variables) were examined using SPSS Statistics v25. e constant
comparative method was used to analyze the chaplains’ free-
text responses (Maxwell 2010). An audit trail was maintained by
the rst author – a gerontologist and academic researcher who
designed and implemented the survey, tracked the research team’s
developing ideas, and participated in coding and thematic analysis.
Multiple coders were engaged to enhance analytical rigor. e rst
author worked with research team members including co-authors
to conduct the initial coding of free-text responses and develop an
initial code book. Each of the 3 open-ended questions was initially
assigned to 2 coders, who individually coded responses to the same
https://doi.org/10.1017/S1478951522001560 Published online by Cambridge University Press
Palliative and Supportive Care
question. e 2 coders met with each other to compare and dis-
cuss the codes until complete agreement was reached. en the
rst author, who coded the rst 20% of the data separately from
the 2 coders, met with them and discussed codes until complete
agreement was reached again. e 2 coders then met to review and
nalize the coding. e same process was used in coding the other
2 open-ended questions. Following procedures outlined by Braun
and Clarke (2006), the team members then collated codes into
potential themes, using thematic mapping to visualize relationships
between themes. is dialogue was ongoing, and the research team
met several times throughout the thematic analysis to review and
rene codes, themes, and subthemes and to reach a nal agree-
ment. Reexivity was maintained by the research team throughout
the analysis and writing, by recording, discussing, and challenging
assumptions about responses.
Results
Participants’ characteristics
Of the 563 board-certied chaplains participating in the survey,
244 responded to the 3 open-ended questions (see Table 1 for
details). Community hospitals were their most common place of
employment (46%), followed by academic medical centers (33%).
Over half of the 244 chaplains (57%) were designated for inten-
sive or critical care units. Over one-third (37%) reported that over
80% of their patients had a serious life-threatening illness; most of
the chaplains worked with nurses (96%), social workers (93%), and
medical doctors (91%).
Salient themes for patients’ hopes and fears
Five major themes emerged from the chaplains’ responses about
patients’ hopes and fears during ACP: (1) existential, religious, and
spiritual questions; (2) suering, peace, and comfort; (3) focus on
the present; (4) hopes for family; and (5) doubt and distrust.
Existential, religious, and spiritual questions
Many patients’ hopes and fears during ACP discussions were inter-
twined with existential matters. ese included faith in God to
heal and/or forgive them, desire for reunication with deceased
loved ones in the aerlife, and discomfort regarding the uncer-
tainty and great unknown of death. For some patients, the faith
that “God decides whether and when I die” led to “limiting their
options” because of the belief that they “could recover” or that
“ACP is a slippery slope to doubting God.” As an intensive care unit
(ICU) chaplain at an academic medical center noted from personal
experience, “even aer making the patient DNR or no escalation
of care, there is usually some sort of mention of a miracle to be
had” (ID:30). Other patients found “hope in their medical team
(chaplain included) as agents of God to render the care needed.”
Additionally, chaplains recounted patients’ “hope of being reunited
with deceased loved ones in the aerlife” (ID:24). ese hopes,
reported by chaplains, were oen accompanied by patients’ fear of
the unknown at the end of life. is uncertainty in the ACP process
was highlighted by one ICU and oncology chaplain at a community
hospital who stated that
Most patients with chronic illnesses only hear about treatment options
from physicians/specialists. Never what a chronic illness trajectory really
looks like. When a chaplain sees someone inpatient, it is typically later in
Table 1. N=
n
Chaplain characteristics
<
>
Work setting characteristics
Continued
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et al.
Table 1. Continued.
n
their treatment cycle. People are unsure where they are and are uncom-
fortable (as well as family members) entering into EoL [end-of-life] discus-
sions. (ID:12)
Chaplains also described patients’ fears that ACP is somehow
indicative of, or inviting, or hastening death. A chaplain from an
inpatient/home hospice agency (ID:25) reported that some indi-
viduals believed that “making a plan ‘makes’ it [death and dying]
happen. [e] concept of advanced planning may/does imply giv-
ing up hope under this mindset,” which can elicit heightened
unease about this unknown frontier.
Suering, peace, and comfort
ACP conversations encourage patients to think tangibly about the
elements that constitute a “good death” aligned with their own
meaning-making or spirituality, with their own deeply held values.
According to the chaplains, among the salient hopes expressed by
patients about the process of death and dying was the wish to avoid
and reduce suering. Although each individual understands and
views suering in a dierent way, one ICU chaplain at a commu-
nity hospital summarized this as patients’ hope to be “pain free in
the[ir] concluding days of life on earth” (ID:22). For some patients,
mitigating pain and suering specically meant avoiding unnec-
essary use of life support. As one hospice chaplain described, for
some this is about “not prolong[ing] life unnecessarily if the quality
of life is not there” (ID:11).
In tandem with a desire to ease pain, chaplains reported
patients’ hopes for a peaceful, comfortable death. e responses
from the chaplains suggest that denitions of a “good death” that
brings peace and comfort are personal and unique to the patient,
oen reecting that individual’s personal values and idiosyncratic
spiritual beliefs. One palliative chaplain at a community hospital
described this as patients’ “hoping to be comfortable at home sur-
rounded by loved ones at the end of life” (ID:26). Another chaplain
from an ICU in an academic medical center noted, however, that
“peaceful” death is not universal: “most oen they [patients] want
a peaceful death, sometimes they want to ght to the last breath”
(ID:33).
Focus on the present
Many chaplains shared patients’ renewed hopes that ACP would
in turn enable them to focus on the present, although the idea of
ACP generally evokes the immediacy of death and dying in people’s
minds. Chaplains noted that patients felt that ACP provided them
with a “new sense of empowerment and personal agency,” allowing
them to “nd meaning and purpose in the time they have.” As an
ICU chaplain at a community hospital stated,
Oen people express that they hope they never need to have these [ACP]
decisions come up. Butthey feel better knowing that they’ve had at least one
of these necessary conversations with someone who can communicate to
other medical professionals and get the documents into their chart. (ID:4)
inking about patients’ perspectives, a palliative chaplain pro-
vided the following thoughts expressed by an individual who
began participating in ACP conversations: “I am grateful we did
this [ACP], now I can relax and live the rest of my life know-
ing this is complete, and that we will revisit during every PC
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Palliative and Supportive Care
[primary care] visit to redene my wishes” (ID:27). In this way,
ACP oered the opportunity to both clarify goals of care and
continue engaging in moments that brought joy, meaning, and
fulllment.
Hopes for family
Family was an important reason why patients engaged in ACP.
Patients expressed hope for their families during ACP discussions:
“ey have made their wishes known to their family and the family
won’t be stuck having to make that decision,” wrote one chaplain
who worked in a specialty hospital (ID:16). Another ICU chap-
lain at a community hospital referred to “a sense of relief that their
family knows their desires” (ID:29).
Healthcare chaplains also reported that patients desired a sense
of belonging and connectedness with family and/or loved ones at
the end of life: Patients were “hoping to be comfortable at home
[and] surrounded by loved ones at the end of life” (ID:26, palliative
care chaplain at a community hospital) and “wanting to be able to
interact with loved ones to the end, hoping to die at home” (ID:1,
ICU chaplain at an academic medical center). At the same time,
patients were also concerned for their families, expressing that they
were “fearful of how EOL decisions may aect their family” (ID:5,
inpatient chaplain at a hospital) and hoping to “protect their fam-
ilies from grief, hurt, or confusion during the ACP process” (ID:6,
oncology and palliative chaplain at a community hospital).
Doubt and distrust
With regard to ACP, patients expressed some doubt: “Will my
healthcare representatives follow my directives?” (ID:22). “Will the
medical team do what I want them to do?” (ID:23). An ICU chap-
lain from an academic hospital described concern about families
following patients’ wishes as “lack of condence in their decisions
being carried out, especially family members who are not named
as decision-makers being able to strong-arm the decision-maker at
end of life” (ID:15). Other patients’ lack of trust in institutions par-
tially accounted for the concern that “ACP documents will not be
honored by institutions” (ID:3). As a chaplain from an academic
hospital explained,
Patients doubt that the legal document’s wording will lead providers to end
life sooner than necessary (feels like giving up too much control – due to
the poor legal wording and lack of clarity – even when explained, the terms
and phrasing are too ambiguous to trust completely). (ID:7)
Another chaplain, who worked in a VA hospital, noted that
“some believe we’re looking for a reason to stop medical treatment,
regardless of their preferences” (ID:4). Although an ICUchaplain at
a community hospital described documented wishes as being hon-
ored by family, healthcare providers, or institutions as “the most
common hope,” patients had doubts about ACP’s ability to honor
their wishes and protect their interests.
Salient themes for how to address hopes and fears
ree key themes emerged from the chaplains’ responses about
how to address patients’ hopes and fears during ACP conversa-
tions: (1) active listening to explore and normalize fears, wor-
ries, and doubts; (2) conversations to integrate faith, values, and
preferences into ACP; and (3) education, empowerment, and
advocacy.
Active listening to explore and normalize fears, worries,
and doubts
Chaplains emphasized the importance of intentional, nuanced
proactive listening, frequently described as “thoughtful active lis-
tening,” “active and empathetic listening,” or “always listening more
than I speak, examining the idea of the heart” as they worked to
identify and explore the fears, doubts, worries, uncertainties, and
other emotions of patients during ACP conversations. Empathetic
active listening was a necessary part of acknowledging, validat-
ing, and normalizing patients’ various emotions. As one hospice
chaplain stated, “In addressing these fears, I nd that empathic lis-
tening, arming the fears and allowing the patient to feel heard
and respected in the conversation is a good starting point which
can move the conversation forward” (ID:19). Another chaplain
from a community hospital described the process as “listening and
arming the patients’ hopes and desires. Accompanying them and
letting them lead the way in terms of their personal comfort with
the conversation” (ID:12). One chaplain from a specialty hospital
wrote the following: “Validate their concerns and emotional reac-
tions by arming the resources/inner strengths they may already
possess, such as their family, connection to a faith community, per-
sonal faith, resilience, humor etc.” (ID:31). With active listening
and validating, chaplains aimed to arm and normalize patients’
experiences and feelings and to reassure and support patients’
resources.
Conversations to integrate faith, values, and preferences
into ACP
During ACP conversations, chaplains from various settings – aca-
demic hospitals, long-term care facilities, and other facilities –
focused on having conversations with patients about their faith,
values, and preferences. ey explored how to best integrate these
into advance directives and goals of care, for example, by “focusing
conversations about their values and work to try to direct treat-
ment to match their values” (ID:18). Others oered descriptions
in the form of recommendations: “Utilize patient’s spiritual world
view and assistance in relating that world view to Advance Care
Planning” (ID:3). “Assure that the patient’s preferences are included
in the plan of care. Reinforce that agent only comes into play when
the patient is unable to express his/her wishes directly”(ID:21).
Chaplains also addressed broader religious and spiritual needs
of patients from various faith traditions during ACP conversations.
As one chaplain from a long-term care facility noted,
For those who believe in a God/higher power we remind them they are
never alone. rough the gi of the HolySpirit God abides in us and healing
is attainable. For Native Americans/First Nations to be part of nature (Hopi
prayer) is comforting. If a person is Jewish or Muslim for example we will
call clergy Rabbi or Imam. Recently we have Buddhist monks chanting.
ere is too much to list here on how we support our precious residents.
Peace. (ID:34)
Another community hospital chaplain described integrating
faith into ACP by asking questions as follows:
“We want to honor your faith and your beliefs. When the time comes, who
can help us know what your wishes are?” “I appreciate your willingness to
share your faith with me.I’ve known of situations where it wouldhave really
helped a medical team to hear directly from the patient about their wishes,
but the patient couldn’t talk in that moment. Would you be willing to put
some of those beliefs and preferences on paper, so that if we can’t ask you
directly we can have that?” (ID:17)
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et al.
Chaplains also oen mentioned their role in explaining the
connection between ACP and family. One chaplain who worked
in both a community hospital and outpatient settings described
saying the following to patients:
“When your healthcare wishes are discussed with family, loved ones, and
your physician and documented, you can be assured that your wishes will
be honored.” And, “Making your wishes and decisions known will take the
burden o of your loved ones in the future.” (ID:10)
Chaplains worked to “process their [patients’] emotions, deter-
mine how their spirituality connects to their beliefs, and facilitate
conversations with family around the patients end of life prefer-
ences” (ID:11) and “invite them to reect on these fears and worries
and, when possible, invite their families or loved ones into that
conversation” (ID:8).
Education, empowerment, and advocacy
Chaplains identied providing education and information about
ACP as an integral component of their work. One community hos-
pital chaplain described the attempt to assist patients “with facts
…palliative and hospice care oen actually prolongs someone’s
life because of the knowledgeable care being provided, directing
care gives clear guidance to those who will make decisions should
the patient be unable to do so” (ID:2). Chaplains also described
the role of connecting and mediating between patients and clinical
team members. Activities included “help[ing] them identify those
important wishes, write them on the document, and communicate
via electronic medical record the wishes to clinicians” (ID:13) and
“assur[ing] them of their personal agency and support of health
care team to honor their choices” (ID:32). rough these eorts,
chaplains wanted to empower and facilitate informed decision-
making, honor patient autonomy, and advocate for patients’ val-
ues and preferences. A chaplain working in an academic hospital
described
focusing on their goal and what they want and how they want to LIVE
instead of dying. Facilitate their agency and power to incorporate their
beliefs, values, sense of meaning and purpose into actions they can take
now to ensure their choices are realized. (ID:14)
Chaplains worked to advocate for patients, particularly to
“encourage patient conversation with HCR and assure patient that
medical sta has the same desire to keep the patient pain free”
(ID:22).
Discussion
Conversations about ACP and serious illness require the contem-
plation of deeply personal values and beliefs, as well as concerns
about the unknown and uncertainty in death and dying, which
are spiritual in nature. With 244 chaplains’ free-text online sur-
vey responses, this study explored spiritual concerns and needs
observed by chaplains in these conversations with patients and how
chaplains address them.
During ACP conversations with patients, the chaplains met with
existential, religious, or spiritual questions and issues, such as fear
of the unknown, hope for miracles, concerns about the aerlife,
and the individual’s relationship to God or a higher power. Patients
turned to their faith and deeply held values to seek healing and
recovery as well as guidance during decision-making, oen con-
current with the overall ACP process and ongoing discussions.
Chaplains also reported that patients experienced feelings of uncer-
tainty, being unprepared, or being fearful of impending death while
hoping to avoid suering and to achieve peace and comfort at the
end of life.
Although some patients apparently continued to ght their ill-
ness, an important priority among patients was their relief from
suering, oen through the limiting of unnecessary aggressive
care, which made ACP conversations all the more important.
Moreover, chaplains reported that ACP helped patients renew their
resolve to focus on and make the most of the present moment
of living. Families and loved ones were also important. Hope for
closeness with family members and loved ones throughout the
ACP process was followed by fears of having dicult conversations
with family members and placing emotional and other burdens on
them. Finally, patients hoped that their wishes would be shared
with and honored by their families and their health-care teams.
Letting families know of their wishes was a major motivation for
patients to engage in ACP. At the same time, chaplains noted
that patients feared that families, designated agents, health-care
providers, medical teams, or institutions might not honor their
documented wishes. Distrust, especially of health-care providers
and institutions, was a major reason for this fear.
Many of these ndings are not surprising, given the nature of
ACP conversations and the circumstances in which these conversa-
tions take place in health-care settings. Patients’ concerns reported
by the chaplains in this study were oen existential and spiritual,
even if without explicit, verbal expression or use of the words spiri-
tuality or faith. Chaplains reported that as patients contemplated
their health, illness, and mortality, the patients’ hopes and fears
involved how to live fully in the present, how to live and die peace-
fully and avoid suering as much as possible. Patients desired to
be connected with their families and loved ones, to consider and
seek the sacred and meaning-making, and to contemplate the great
unknown. It may be that patients were encouraged to express these
hopes and fears because they were talking with chaplains rather
than clinicians. Still, the chaplains’ observations of patients’ hopes
and fears corroborate ndings from past studies on psychosocial
barriers to ACP such as patients’ sense of optimism, fears of death
and dying, and worries about family members (Bernard et al. 2020;
Cheung et al. 2020), as well as ndings regarding the spiritual needs
of patients with life-threatening illnesses (Balboni et al. 2010).
e ndings of this study strongly suggest that patients want to
have their religious and spiritual needs taken into account in plan-
ning for the end of life. Medical teams including chaplains should
explore and address a broad range of existential, spiritual, and reli-
gious concerns, so that fears and doubts can be aired and assurance
can be given. Helping patients explore, share, and translate these
weighty topics into decisions about how certain medical treatment
decisions should be made in the future requires special knowledge,
deep listening, strong communication skills, time, and resources
on the part of healthcare providers. Moreover, topics discussed
during ACP conversations such as the aerlife or the patient’s
relationship to a higher power require the engagement of a pro-
fessionally trained health-care chaplain. e healthcare chaplain is
the “spiritual care specialist” on the interdisciplinary team, the team
member most equipped to lead such discussions with patients.
Organizations such as Vital Talk (https://www.vitaltalk.org) oer
training programs in communication for clinicians, but the knowl-
edge and skills to address the deeply personal, spiritual concerns of
patients have always been part of the training and board certica-
tion of professional healthcare chaplains. us, the chaplains in our
study described their approach to addressing patients’ hopes, fears,
and distrust as consisting of active listening to explore and nor-
malize fears, worries, and doubts; the integration of faith, values,
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Palliative and Supportive Care
and preferences within ACP; and education, empowerment, and
advocacy.
Nevertheless, spiritual or religious support is not consistently
oered during ACP conversations with patients and families. For
example, a study of family meetings in ICUs (Erneco et al. 2015)
found that 77% of the 249 participating families wanted religious
issues included in their discussions, but that this happened only
16% of the time; indeed a chaplain was present in only 2 of the
meetings. A recent meta-analysis of spirituality in serious illness
(Balboni et al. 2022) has concluded that (1) spirituality is impor-
tant for most patients; (2) spirituality can play a role in medical
decision-making; (3) spiritual needs are common; (4) spiritual care
is frequently desired by patients, yet spiritual needs are infrequently
addressed in medical care; and (5) unaddressed spiritual needs are
associated with poorer patient quality of life, whereas provision
of spiritual care is associated with better patient end-of-life out-
comes. Balboni et al. (2022) concluded that spiritual care should
be incorporated within medical care for serious illness, that edu-
cation about spiritual care in serious illness should be provided to
interdisciplinary teams, and that spiritual care specialists – board-
certied chaplains – should be included in serious illness medical
care.
One reason for the limited spiritual or religious support for
patients with serious illnesses may be that many settings where
these discussions take place do not have the regular services
of a professional chaplain as the team’s spiritual care specialist.
Although almost half of the survey responses in this study came
from chaplains working in community hospitals, assisted living
facilities, or nursing homes, these facilities are also least likely
to have adequate professional chaplain resources. e disconnect
between what patients clearly desire or need and what is oered
by clinical teams could be bridged by integrating board-certied
chaplains as members of teams who participate in processes, as well
as by providing potential training and education for nonchaplain
clinicians on interdisciplinary teams.
Moreover, oen the chaplaincy resources in various types
of facilities do not have advanced, specialized training or spe-
cialty certication in having conversations about serious illness
or ACP or in working as members of interdisciplinary teams.
Chaplains have specialized training in addressing existential, spiri-
tual, and religious needs, but their training in certain communica-
tion skills is limited – training in how to elicit goals and values and
how to productively participate in or even lead family meetings.
Instruction on how to address issues raised in ACP discussions
and in the dynamics of family meetings as parts of health-care
chaplain training and certication may help. In the past, the isola-
tion of facilities in small communities, oen in rural areas, made
the delivery of training to their chaplains dicult. Today, many
online educational resources for ACP discussions are available to
facilitate the eective engagement of healthcare chaplains in crit-
ical conversations with patients (e.g., Respecting Choices, https://
respectingchoices.org/advance-care-planning-courses).
ese ndings and implications, however, should be inter-
preted with caution due to limitations in our study’s design. e
study’s ndings are based on written responses to open-ended
questions by a convenience sample of board-certied health-
care chaplains recruited from 3 of 14 North American certifying
bodies for chaplains. e majority of chaplains in our sam-
ple were White (84%) and Protestant (63%). us, we may not
have fully captured the perspectives and experiences of chap-
lains from racially and/or ethnically minoritized backgrounds or
with dierent religious aliations with regards to facilitating ACP
conversations. Past studies have consistently documented dierent
attitudes and practices toward ACP among diverse racial/ethnic
groups (Peterson et al. 2019). As such, racially/ethnically minori-
tized or non-Protestant chaplains may have dierent perspectives
on the patient’s need for ACP, spiritual, or religious concerns
expressed during ACP, or how to facilitate ACP among various
patient populations that are dierent from those of White and
protestant peers. Also, only 40% of survey participants responded
to the survey’s 3 open-ended questions. e views of chaplains who
did not respond to these questions or who were members of other
organizations (and therefore were not included in our sample) may
not be reected in our ndings. In addition, our ndings may lack
the depth that might be found in face-to-face interviews, the main
method of data collection in qualitative research.
Nevertheless, this study contributes to the small but growing
body of literature on the role of chaplains in facilitating goals of
care conversations. Our study ndings document the personal,
existential, and spiritual nature of conversations about ACP and
goals of care, and that patients want to have their religious and
spiritual needs taken into account in planning for the end of life.
ACP conversations involve medical, psychosocial, familial, and
spiritual concerns, and there is a need for deeper listening and
engagement by providers to provide holistic support during these
important conversations. e healthcare chaplain as the “spiri-
tual care specialist” on the interdisciplinary team may be most
equipped to lead such discussions with patients. Yet, many pri-
mary care and long-term care institutions do not have the regular
services of a professional chaplain. erefore, more concrete, sys-
tematic eorts should be made to have specialty-trained chaplains
integrated within care teams at various settings, especially outside
acute, inpatient settings where chaplain services are most likely to
be found, and promote interprofessional communication and col-
laboration between team members to best address and meet the
spiritual and existential needs of the patients and families whom
they serve.
Acknowledgments. e authors would like to acknowledge the Association
of Professional Chaplains (APC), National Association of Catholic Chaplains
(NACC), and Spiritual Care Association (SCA) for their recruitment eorts.
ey thank the participants for their time. Editorial support with manuscript
development was provided by the Cain Center for Nursing Research and
the Center for Transdisciplinary Collaborative Research in Self-Management
Science (P30, NR015335) at the Universityof Texas at AustinS choolof Nursing.
Conflicts of interest. Nothing to disclose.
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