religions

Article
Spiritual Care in Palliative Care
Megan C. Best 1, * , Bella Vivat 2 and Marie-Jose Gijsberts 3

1 Institute for Ethics and Society, University of Notre Dame Australia, Sydney 2007, Australia
2 Marie Curie Palliative Care Research Department, Division of Psychiatry, University College London,
London WC1E 6BT, UK
3 End-of-Life Care Research Group, Vrije Universiteit Brussel & Ghent University, 1090 Brussel, Belgium
* Correspondence: [email protected]

Abstract: Palliative care has always included spiritual care, but the provision and inclusion of
spiritual care within and across palliative care services internationally is sub-optimal. In this summary
overview, we address understandings and meanings of spirituality and related terms, both generally
and in the context of healthcare, and outline the importance of spiritual well-being and spiritual care
at the end of life. We summarise what spiritual care involves, its benefits for palliative care patients
and their families, and consider how its provision might be helped or hindered. There is currently a
limited evidence base for the efficacy of interventions including spiritual and/or religious care, and
large-scale studies in particular are lacking. However, those mostly small-scale and/or qualitative
studies which have been conducted to date show that addressing the spiritual needs of patients in
palliative care is associated with many positive outcomes for both patients and their relatives. More
research in this area is necessary to develop and enhance the evidence base, and optimal provision of
spiritual care requires that providers explicitly recognise the need for such care, including through
providing training and support for staff.

Keywords: spirituality; spiritual well-being; spiritual care; palliative care; terminal care; end of life;
religion; well-being

1. Introduction
Citation: Best, Megan C., Bella Vivat, Palliative care has always included spiritual care (Saunders et al. 1981; Saunders 1967;
and Marie-Jose Gijsberts. 2023. Mount 1976). The World Health Organisation (WHO) recently reaffirmed that ‘palliative
Spiritual Care in Palliative Care. care improves the quality of life of patients and that of their families who are facing
Religions 14: 320. https://doi.org/ challenges associated with life-threatening illness, whether physical, psychological, social
10.3390/rel14030320 or spiritual’ (World Health Organization 2020). However, the provision of spiritual care in
palliative care is still patchy, for reasons including inadequate understanding and training
Academic Editor: Bill Schmidt
of staff (Best et al. 2016a; Selman et al. 2018). This paper provides a summary overview of
Received: 31 October 2022 the place of spiritual care in end-of-life care.
Revised: 23 January 2023
Accepted: 22 February 2023 2. What Is Spirituality?
Published: 28 February 2023 Many definitions of spirituality have been suggested, and health care discussions on
this topic have been dominated by debates over the meaning of the term (Reinert and
Koenig 2013; Tanyi 2002; Vivat 2012). Those attempting to find a workable definition
acknowledge the need to embrace the richness of spiritual diversity while at the same
Copyright: © 2023 by the authors.
time finding common ground (Nolan et al. 2011). Cultural diversity in understandings of
Licensee MDPI, Basel, Switzerland.
This article is an open access article
spirituality should also be considered (Hanssen and Pedersen 2013), and can particularly
distributed under the terms and
affect how the place of religion is understood in relation to human spirituality.
conditions of the Creative Commons The Spiritual Care Task Force of the European Association of Palliative Care (EAPC)
Attribution (CC BY) license (https:// has defined spirituality as ‘the dynamic dimension of human life that relates to the way
creativecommons.org/licenses/by/ persons (individual and community) experience, express and/or seek meaning, purpose
4.0/). and transcendence, and the way they connect to the moment, to self, to others, to nature,

Religions 2023, 14, 320. https://doi.org/10.3390/rel14030320 https://www.mdpi.com/journal/religions

Religions 2023, 14, 320 2 of 11

to the significant and/or the sacred’ (Nolan et al. 2011). Similarly, spirituality has been
described as the way people engage with the purpose and meaning of human existence,
and the way this informs their personal values (Cobb et al. 2012a).
Weathers and colleagues (Weathers et al. 2016) conducted a conceptual analysis of
spirituality, and, resonating with previous definitions, identified three defining attributes:
connectedness, transcendence, and meaning in life. In their analysis, transcendence refers
to the individual’s ability to see beyond the limitations of the present situation and any
suffering it might entail. Sulmasy (2002) conceptualises human spirituality as beings in a
relationship, employing a biopsychosocial–spiritual model of human beings, who identify
relationships with themselves, others, the environment, and/or the significant/sacred as
the source of their spiritual strength (Sulmasy 2002). Personal spirituality is shaped by
a person’s worldview and can be heightened by challenging experiences such as serious
illness. Weathers et al. (2016) also highlight the multidimensionality of spirituality, the
particularity of each person’s spirituality, and that it is broader than religious beliefs or
affiliations. The nature of any person’s spiritual beliefs can therefore only be known by
asking them.
It is salient here to clarify the contribution of religion to spirituality. It has been argued
that religion also has no universally accepted definition, and that it is not clear that it means
the same thing to all people (Koenig et al. 2012). However, it is usually understood as
explicit beliefs and formal, organized practices for people who share common beliefs in
a spiritual cognitive and behavioural context (Gijsberts et al. 2011). Hill and colleagues
(Hill et al. 2000) offered an operational definition of both religion and spirituality as: ‘a
search for the sacred’, but added that religion is also constituted by the means and methods
(e.g., rituals or prescribed behaviours) of the search that receive validation and support from
within an identifiable group of people. As a formal system of belief, religion can contribute
to a person’s spirituality, and should be considered as such for those with religious faiths,
and for some agnostics, who may move towards or away from religion across their lives
(Lim et al. 2010).

3. Why Include Spiritual Care in Healthcare?

Medicine and religion have a long joint history (Koenig et al. 2012). Spirituality is
a universal human characteristic and has always been an integral element of palliative
care, whether understood as religion specifically, or more broadly. However, interest in
incorporating spirituality into the role of healthcare professionals more generally has gone
in cycles, even in palliative care, and has only recently become prominent across all health
care. This recent increased interest is often attributed to scientific studies identifying links
between spirituality and well-being, and high levels of patient interest in having their
spiritual well-being addressed in the healthcare context (Best et al. 2015c; Koenig et al.
2012). However, even in the context of patient-centred care, patient wishes are not sufficient
to justify including spiritual care in healthcare. Further, the beneficial outcomes for spiritual
care identified in some studies, while encouraging, are not yet fully established empirically
(Steinhauser et al. 2017). The major warrant for addressing the spiritual needs of patients
lies in the nature of healing, and the complexity of human beings, who incorporate not
only the physical, but also the psychological, the social and the spiritual, all of which are
affected by illness (Sulmasy 2002).
However, Phelps and colleagues (Phelps et al. 2012) suggest that healthcare is enhanced
when staff are aware of patients’ strongly held religious and spiritual beliefs. Such beliefs are
known to influence decision-making, so when staff are aware of them, they can arrange more
appropriate and individualized care (Phelps et al. 2012; Pathy et al. 2011; Padela et al. 2012). It
has been argued that by ignoring spirituality, staff may be separating the patient from what may
be the most important part of a person’s coping mechanism (Pargament et al. 1998).
Some discussions of the spiritual domain focus on attempts to distinguish the spiritual
from the emotional/psychological and social domains. Relationships and connectedness
at the end of life can be considered as elements of all these domains. A recent systematic
Religions 2023, 14, 320 3 of 11

review considers how patients’ social and spiritual needs may overlap (Lormans et al.
2021), and a recent survey of nursing home physicians in the Netherlands had similar
findings (Gijsberts et al. 2020). Social workers, psychologists, and chaplains may all be
involved in addressing these overlapping needs (IKNL 2018). Acknowledging the fuzzy
boundaries between the dimensions of care other than physical care, the spiritual dimension
can become increasingly important for a person with increased seriousness of disease
(Koenig 1998).
Someone who receives a life-threatening diagnosis such as cancer is confronted with
existential questions such as ‘why is this happening to me?’, ‘what will happen after I die’,
or ‘will my family cope after I am gone?’. This has been described as the ‘existential slap’
(Coyle 2004), or personal crisis, which accompanies the realization that death is a possible
outcome, regardless of prognosis. Spiritual resources are required to cope with this crisis
and if the questions that arise are not resolved, existential (or spiritual) suffering can ensue
(Best et al. 2015a). Spiritual well-being can be valuable for coping with this event and can
help to bring about transformation through personal suffering (Pargament 1996; Best et al.
2015a). The healthcare professional as healer therefore needs to address the whole person
and will not practice exemplary medicine without attending to all patient needs, including
spiritual needs. On these grounds, Sulmasy suggests that attention to the spiritual needs
(that is, spiritual care) of patients is not only permissible, but a moral obligation for doctors
(Sulmasy 2006).

4. What Is Spiritual Well-Being?

Spirituality is a problematic concept as a health care outcome because levels of spiritu-
ality as a whole are challenging to assess, and particularly because a person’s spirituality
can have positive or negative effects on the person. Some spiritual and/or religious beliefs
can cause distress for some, and may increase the burdens of illness, for example, by
limiting treatment options (Conti et al. 2018; Pathy et al. 2011; Padela et al. 2012). Negative
religious coping, such as interpreting disease as a punishment from God, is related to
declines in spiritual, mental, and physical health and increased risk of mortality (Parga-
ment et al. 2013). Thus, assessing levels of spirituality, as opposed to spiritual well-being,
can have contradictory results. Health care outcome measures in this field therefore more
often assess functions of a person’s spirituality, such as spiritual well-being, or, conversely,
spiritual needs.
Spiritual well-being has been identified as a core domain in the assessment of quality
of life in the setting of serious illness (Brady et al. 1999; Peterman et al. 2002; Whitford et al.
2008). It has been shown to be as important as physical well-being when assessing quality
of life in cancer patients (Brady et al. 1999). Quality of life measures identify a unique effect
for the spiritual domain, distinct from psychosocial and emotional domains, and which
enables some patients to enjoy life even in the midst of experiencing unpleasant physical
symptoms (Brady et al. 1999; Peterman et al. 2002).
A frequently used measure of spiritual well-being, the Functional Assessment of
Chronic Illness Therapy—Spiritual well-being scale (FACIT-Sp) (Brady et al. 1999; Canada
et al. 2008), is multidimensional, with two or three subscales (Faith and Meaning/Peace, or,
separately as Faith, Meaning, and Peace). Faith refers to the perceived comfort derived from
a sense of connection to something larger than the self. Peterman and colleagues found
that the Faith subscale reflected measures of religious activity and intrinsic religiousness
(Peterman et al. 2002). Meaning is a cognitive measure of spirituality, related to both
physical and mental health, and correlating with one’s sense of meaning and purpose in
life (Canada et al. 2008). Whitford and colleagues found that Meaning correlated with
social well-being, but was not related to religiosity (Whitford and Olver 2012). Peace refers
to an affective dimension of SWB and harmony, for example that which is achieved by
reconciling oneself to one’s circumstances at the end of life, widely considered a feature
of a ‘good death’ (Canada et al. 2008; Whitford and Olver 2012; Olver 2013; Steinhauser
et al. 2000a). This measure has been translated into 38 other languages. It was, however,
Religions 2023, 14, 320 4 of 11

developed with non-palliative patients, and in a monocultural and monolingual context

(the USA), and has been criticised for its cultural particularity (Vermandere et al. 2016).
The Quality of Life Group (QLG) of the European Organisation for Research and
Treatment of Cancer (EORTC) employs a deliberate cross-cultural, multilingual approach
to developing quality of life measures (Wheelwright et al. 2021). Following this approach,
members of the QLG developed and validated a measure of spiritual well-being for people
receiving palliative care for cancer, the EORTC QLQ-SWB32 (SWB32) (Vivat et al. 2017; Vivat
et al. 2013). The measure was developed internationally from the outset, with collaborators
in multiple countries and using a variety of languages, and the final validation study
included 451 patient participants, in fourteen countries and ten languages (Vivat et al. 2017).
The SWB32 has four scales: Relationship with Self, Relationships with Others, Relationship
with Someone or Something Greater, and Existential, plus a global spiritual well-being
item and a single-item scale for Relationship with God, for those with a religious faith
including a personal God (op cit.). The measure has since been translated into another
nine languages (including Swedish, Finnish, Greek, and Croatian), and validated in other
countries and with people with illnesses other than cancer and with non-terminal diseases
(Dabo et al. 2021).

5. How Does Spiritual Well-Being Affect Patient Outcomes?

Multiple studies have highlighted the importance of spiritual well-being for people
living with advanced disease (Cobb et al. 2012b; Mesquita et al. 2017; Bandeali et al. 2020).
Spiritual well-being is associated with social, mental and emotional health (Koenig et al.
2012). For example, high levels of spiritual well-being have been shown to be protective
against depression and anxiety, and to promote adjustment to a cancer diagnosis and an
increase in cancer-related personal growth (Yanez et al. 2009; McCoubrie and Davies 2006;
McClain et al. 2003). Religion can be an important resource in coping with stress (Pargament
and Abu Raiya 2007), and spiritual well-being has been found to be protective against
distress for patients facing death, including that from pain, restlessness and symptoms of
despair (Wasner et al. 2005; McClain et al. 2003).
Spiritual well-being has also been identified as beneficial for family caregivers of
palliative care patients. Research suggests similar benefits for family members’ quality of
life as those seen for patients (Hebert et al. 2007; Best et al. 2015b; Delgado-Guay et al. 2013;
O’Callaghan et al. 2020).
However, although the overall thrust of the literature suggests a positive impact for spiri-
tual well-being, the underlying mechanisms for these associations have not been established
and a cause-and-effect relationship has still not been confirmed. More research is needed, from
all perspectives and using all methodologies: qualitative, quantitative, and mixed methods in
prospective, longitudinal studies (Steinhauser et al. 2017; Selman et al. 2018).

6. What Are Patients’ Spiritual Needs?

Qualitative research studies have explored patients’ spiritual needs and found that
these are numerous and broad in scope. Spiritual needs have been found to be common in
patients with a life-threatening disease (Grant et al. 2005; Steinhauser et al. 2000a). Spiritual
distress is prevalent amongst palliative care patients, ranging from 10–63% of inpatients,
and family caregivers (Egan et al. 2017; Roze des Ordons et al. 2018). Kellehear developed a
theoretical model of spiritual needs which characterized them as multi-dimensional, but all
directed towards finding meaning in the illness experience in order to overcome suffering
(Kellehear 2000). Hermann’s study of dying patients identified 29 unique spiritual needs
which were grouped into six categories: need for religion, need for companionship, need
for involvement and control, need to finish business, need to experience nature, and need
for positive outlook (Hermann 2001). Steinhauser and colleagues found that being at peace
with God was the second most important factor for quality of life at the end-of-life for
cancer patients after freedom from pain (Steinhauser et al. 2006; Steinhauser et al. 2000b).
Religions 2023, 14, 320 5 of 11

In their study with people with advanced cancer, Alcorn and colleagues (Alcorn et al.
2010) found that even those participants who claimed that religion and spirituality were
‘not important’ had at least one spiritual concern. Exline and colleagues found that half of
those who identified as agnostic, atheist or non-affiliated religion in their study expressed
anger towards God (Exline et al. 2011). These findings indicate that spiritual needs are not
limited to those who profess religious affiliation, and that healthcare providers should not
limit spiritual care to those who express or profess overtly religious beliefs.

7. What Constitutes Spiritual Care?

Spiritual care generally refers to recognizing and supporting patients’ spiritual well-
being in some way. Health literature often conflates the concepts of spiritual screening,
spiritual history-taking, and spiritual care. This may be partly because spiritual discussion
can itself develop into a therapeutic intervention, and some measures of spiritual well-being
explicitly acknowledge that the discussion of the measure with the respondent should be
recognised as a first step in an intervention (e.g., Vivat et al. 2017). It may therefore be
difficult to distinguish between these terms (Cobb 2001).
Chaplains (also known as spiritual care or pastoral care providers) are often the staff
members considered responsible for the spiritual care of patients, but the involvement of
other members of the healthcare team in spiritual care is increasingly recommended in
view of the benefits of a generalist-specialist spiritual care model (Puchalski et al. 2009).
This is particularly the case in those settings where chaplain services are insufficient to
meet patient need, or not available at all (Koenig 2014).
Engaging in spiritual care requires advanced communications skills and spiritual
awareness in the clinician (Best et al. 2016b; Paal et al. 2017; Ross et al. 2015; Ford et al.
2014; Anandarajah and Hight 2001). Attention to the clinician’s own spirituality is often
identified as the first step of spiritual care training (Best et al. 2020). Examining one’s own
spirituality not only improves awareness of patients’ spiritual needs, but also encourages
personal growth, and reduces the risk that clinicians’ own existential distractions impinge
on patient care (Koenig 2014; Jones 1999).
Routine questioning about spirituality can be included in the social history when
baseline information about a patient is collected. Some patients may not choose to share
their spiritual concerns with clinicians until a therapeutic relationship has developed, but
some research has found that patients are more likely to discuss spirituality in their first PC
consultation when their doctor asks them about their concerns (Best et al. 2019), so routine
questioning about spiritual concerns may be helpful. Regardless of the outcome of any
spiritual discussion, details should be recorded in the patient record and care plan, as with
any other relevant patient information.
Appropriate timing for spiritual inquiry requires careful interpretation of verbal and
nonverbal cues, which may indicate patients are reflecting on questions of purpose and
meaning. In the palliative care context, difficult to manage symptoms may indicate an
underlying spiritual problem (Best et al. 2015b). Experienced clinicians report that initiating
spiritual discussions is aided by observing patient characteristics such as choice of words
(particularly religious terms), body language, or objects in the patient’s room (religious
texts, family photos, etc.) (Best et al. 2020).
Skills in this sensitive area develop with experience, which newer professionals lack.
Experienced clinicians often prefer to develop their own form of enquiry, which may often
involve a single question prompting the patient to tell their story, such as ‘What is important
to you at this time?’ or ‘What gives you strength?’ (Best et al. 2015b; Paal et al. 2017). It has
been suggested that a prescribed set of questions may prevent clinicians from giving their
full attention to building a relationship with the patient, and responding to what is said
(Paal et al. 2017).
However, many tools are available to enable initiating discussion of spiritual well-
being with patients, or support spiritual history taking, and these may be helpful for less
experienced clinicians, who are uncertain of how to initiate such sensitive conversations
Religions 2023, 14, 320 6 of 11

(Nissen et al. 2020). Some examples include SPIRITual History (Maugans 1996), FACIT-Sp
(Brady et al. 1999), HOPE (Anandarajah and Hight 2001), FICA (Puchalski 2002), The Ars
Moriendi (“Art of Dying”) (Leget 2007), FAITH (Neely and Minford 2009), EORTC QLQ-
SWB32 (Vivat et al. 2017), and Q2-SAM (Ross and McSherry 2018). Tools may besuitable
for specific clinical settings depending on their context of development and validation, a
context which is particularly important for this area of care, where cultural variations are
significant. The countries and languages in which tools are initially developed may affect
their later transferability to other contexts (Vivat 2012).
It is known that patients’ spiritual needs fluctuate over time (Best et al. 2022), so it is
necessary to check with patients at regular intervals in case any new spiritual needs have arisen.
This ‘spiritual screening’ (Best et al. 2020) can be conducted regularly as part of initial intake
and subsequent routine check-ups. Short screening tools have been validated in palliative care
populations by Steinhauser et al. (2006) and King et al. (2017), although conversational prompts
can also be effective within an established relationship (Best et al. 2023).
Some palliative care patients have reported that they do not expect their clinicians
to provide spiritual guidance (Best et al. 2014). If a spiritual need is identified, and/or
the clinician feels unable to address the patient’s spiritual concerns, referral to a hospital
chaplain or other spiritual care specialist is recommended. The individual selected should
be appropriate to the spirituality of the patient and will be dependent on available resources.
Chaplains are trained to conduct an in-depth assessment and the effectiveness of care does
not depend on faith-concordance between provider and patient (Liefbroer and Nagel 2021).
Other patients may choose not to receive spiritual care from clinicians, or already have
or arrange their own support networks. These choices should be respected. People who are
living with terminal diseases wish for empathy, respect for their values, and legitimization
of their spiritual concerns (Ellis and Campbell 2004) and spiritual enquiry and care should
always be culturally appropriate (Best et al. 2020).

8. How Does Spiritual Care Help Patients?

Empirical studies have demonstrated that enquiry into a patient’s spiritual needs has
a number of benefits. Such enquiry enables clinicians to get to know patients better through
non-medical dialogue (Best et al. 2015b), and improves doctor-patient relationships by
increasing trust (Taylor et al. 2011). When patients feel valued and affirmed by healthcare
staff, it enhances their ability to cope and find a sense of meaning in their experience of
illness (Grant et al. 2005).
Spiritual care provision is also associated with patients’ improved quality of life at the
end of life (Balboni et al. 2010), increased satisfaction with care (Johnson et al. 2014), and
has also been shown to reduce healthcare costs (Balboni et al. 2011).
Failure to address the spiritual needs of cancer patients is associated with suffering, which
should be the primary target of care in medicine (Edwards et al. 2010; Boston et al. 2001).
Increasing numbers of randomised controlled trials are also being conducted to inves-
tigate the effects of religious and/or spiritual interventions on the well-being of people
receiving palliative care (Vivat et al. 2022). A Cochrane review conducted for 1980 to 2011
(Candy et al. 2012), identified five RCTs, all conducted in the USA. The update of this review
has identified 40 RCTs conducted from 2011 to 2022, and in far more diverse geographical
locations (Vivat et al. 2022). The interventions most frequently used by included studies
were reminiscence/life review (13 studies), and group or individual psychotherapy (14
studies), including Meaning-Centred Behavioural Therapy (Breitbart 2002) and Dignity
Therapy (Chochinov et al. 2005). Small positive effects from these interventions were found,
but meta-analysis was limited by the diversity of studies in the designs used and outcomes
assessed, so it is impossible to make recommendations on the basis of these studies. More
consistency between the designs of future RCTs and those of previous RCTs would facilitate
comparisons and meta-analyses, and thereby enable the drawing of conclusions on the
overall effects of such interventions (Vivat et al. 2022).
Religions 2023, 14, 320 7 of 11

9. How Can the Provision of Spiritual Care Be Helped or Hindered?

Recent reviews of spiritual care have identified factors which influence the introduction
of spiritual care in healthcare. In a review of the European palliative care literature, Gijsberts
and colleagues found that spiritual competency and visibility of spiritual care are necessary
for implementing spiritual care in palliative care (Gijsberts et al. 2019). Several studies have
found that spiritual care training is the strongest predictor of spiritual care provision by
clinicians (Balboni et al. 2013; Best et al. 2016a), and that spiritual care training and practice
was more likely to occur when it received institutional support (Jones et al. 2021).
A review exploring the reasons why doctors do not engage in spiritual discussion
found that the most frequent barriers to the provision of spiritual care identified were lack
of training and time, although, interestingly, when more time was available, the frequency
of spiritual discussion did not increase (Best et al. 2016b).

10. Benefits of Spiritual Care Training

Training in spiritual care provision benefits staff members as well as patients. High
levels of competence in spiritual care provision and of personal spirituality are associated
with reduced burnout in palliative care professionals (Paal et al. 2018; Wasner et al. 2005).
Paal and colleagues (Paal et al. 2015), have argued that, when spiritual care is successfully
integrated, it can ‘challenge the spiritual vacuum in healthcare institutions’, but point out
that, for spiritual care to be successful, institutions need also to attend to the spirituality of
their staff (op. cit.).

11. Conclusions
Studies to date have shown that addressing the spiritual needs of patients in palliative
care is associated with many positive outcomes for both patients and their relatives. Al-
though the evidence base for spiritual care interventions is currently limited, more studies
are currently being conducted. More consistency in the design of RCTs, in particular, would
enable meta-analysis and thereby the drawing of broader conclusions on the efficacy of
these interventions. Provision of spiritual care requires that institutions recognise the need
for such care, including through providing staff training and support, which benefits both
patients and staff, who are thereby also enabled to provide better support to patients.

Author Contributions: Conceptualisation, M.C.B., B.V. and M.-J.G.; writing—original draft prepara-
tion, M.C.B.; writing-review and editing, B.V. and M.-J.G., project administration, M.C.B. All authors
have read and agreed to the published version of the manuscript.
Funding: This article received no external funding.
Institutional Review Board Statement: Not applicable.
Informed Consent Statement: Not applicable.
Data Availability Statement: Not applicable.
Conflicts of Interest: The authors declare no conflict of interest.

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