Introduction
Spiritual care is essential to address the problems that arise when a person is diagnosed with a life-threatening disease. Life is forever changed, and existential questions arise about the meaning and significance of life, as well as the need for hope and fulfilment (Puchalski et al. Reference Puchalski, King and Ferrell2018). Palliative care should respond to suffering of any kind and should not only seek to prevent and alleviate physical and psychological suffering, but also the social and spiritual suffering of patients and their families (WHO 2022).
Individuals and their families experience suffering defined as “the specific state of distress that occurs when the individual’s imminent demise is perceived; it continues until the threat of disintegration has passed or until the person’s integrity can otherwise be restored” (Benito et al. Reference Benito, Barbero and Dones2014; Cassell Reference Cassell1999). Loss of meaning and purpose in life, despair, and hopelessness, not being remembered, feelings of guilt and shame, and feeling angry with God are some examples described in the literature in relation to the spiritual suffering experienced by patients. They also include inability to forgive, feelings of abandonment, loneliness, profound sense of lack of control over physical and mental function, loss of faith, need for reconciliation with self or others, and the feeling and processes associated with loss of people, health, and relationships (Puchalski et al. Reference Puchalski, King and Ferrell2018).
A sick and vulnerable person who senses the approach of death requires holistic care from a multidisciplinary team that more accurately understands the discomfort, spiritual needs, and spiritual suffering experienced at this stage of life. Studies indicate that patients expect nurses and other health-care professionals to provide spiritual care, especially in end-of-life situations (Ronaldson et al. Reference Ronaldson, Hayes and Aggar2017). However, it remains difficult for professionals to incorporate spiritual care into patient care (Ghorbani et al. Reference Ghorbani, Mohammadi and Aghabozorgi2021) and to demonstrate the health benefits for individuals.
Spiritual care is defined as “care that recognises and responds to the needs of the human spirit when faced with trauma, illness, or grief. It includes the need for meaning and self-worth, the need for self-expression, the need for faith support, or simply the need for a sensitive listener” (Hamilton et al. Reference Hamilton, Morrison and Macdonald2017). Other authors point out that spiritual care is a subjective and dynamic concept that has 7 defining attributes, such as healing presence, therapeutic use of the self, intuitive sense, exploration of spiritual perspective, patient-centered care, meaning-centered therapeutic intervention, and the creation of a spiritually enriching environment (Ramezani et al. Reference Ramezani, Ahmadi and Mohammadi2014).
It is unclear what interventions are used in the palliative care setting to alleviate suffering and address spiritual needs. Some of the interventions that are generally mentioned are: spiritual support, facilitating spiritual growth, giving hope, decreasing anxiety, emotional support, presence, and care in dying (NANDA 2023; Tordable Reference Tordable2015). On the other hand, there are specialists who have not received sufficient training to provide spiritual care and do not know how to approach it (Ghorbani et al. Reference Ghorbani, Mohammadi and Aghabozorgi2021). This paper provides a scoping review to identify studies on spiritual care interventions in palliative care and highlight the gap in this area for future research.
The results of a study related to spiritual care in palliative care showed that spiritual care helps 88% to feel hopeful, 83% to feel comforted, 79.1% to find meaning and 73.4% to understand meaning, and 95.2% value the spiritual care needed in illness (Bermejo et al. Reference Bermejo, Lozano and Villacieros2013).
A qualitative study on palliative care nurses in Australia aimed to identify spiritual care interventions used in palliative care services. This study classified the interventions into 3 categories: humanistic, pragmatic, and religious interventions (Ronaldson et al. Reference Ronaldson, Hayes and Aggar2017). However, the authors did not describe the population to whom the intervention is delivered, nor did they describe each intervention.
There are systematic reviews related to spiritual care in pediatric and adolescent patients (Robert et al. Reference Robert, Stavinoha and Jones2019) and end-of-life patients through telemedicine (Viana and Abejas Reference Viana and Abejas2022). In addition, a systematic review was found that includes spiritual/existential support to end-of-life patients only by the nursing professional and excludes the multidisciplinary team (Mascio et al. Reference Mascio, Best and Lynch2022). There is another review that seeks to identify conceptual models of spiritual care interventions with the main outcome being to improve the spiritual well-being of patients in the advanced stage (Liu et al. Reference Liu, Harding and Lin2019), not to mention the alleviation of suffering.
On the other hand, we found a scoping review conducted in 2017 with the aim of mapping an “intervention to facilitate forgiveness” implemented and evaluated in palliative care settings (Silva et al. Reference Silva, Caldeira and Coelho2020). While the latter review described may match some of the inclusion criteria for this study, this information is only a small part of addressing the spiritual needs of people in palliative care, so this result would only be a part of what we expect to find.
This review is different from the objectives set out in previous reviews. The difference is in the population and the concept which aims to identify spiritual care interventions that are in line with alleviating suffering and addressing the spiritual needs of adult patients in palliative care units by the multidisciplinary team. Thus, although there are reviews related to spiritual care in palliative care, no systematic review was found (published or ongoing) that comprehensively covers what this review aims to find.
The scoping review aims to examine and clarify broad areas to identify gaps in evidence, clarify key concepts, and inform the types of evidence that address and inform practice in a topic area (Peters et al. Reference Peters, Godfrey and McInerney2020). The aims were to identify and map spiritual care interventions to address spiritual needs and alleviate suffering of patients in the context of palliative care by the multidisciplinary team.
Method
Study design
This scoping review was conducted according to the guidelines of the JBI (Joanna Briggs Institute) methodology (Khalil et al. Reference Khalil, Peters and Tricco2021; Peters et al. Reference Peters, Godfrey and McInerney2020) and the PRISMA ScR (Preferred Reporting Items for Systematic reviews and Meta-Analyses extension for Scoping Reviews) checklist, in accordance with a protocol registered on Open Science framework (OSF) (Registration DOI 10.17605/OSF.IO/A327W) (Jaman-Mewes et al. Reference Jaman-Mewes, Caetano and Mazotti2022).
Review question
The main review question was: What spiritual care interventions are provided to adults and older persons in palliative care units to address spiritual needs and/or alleviate suffering? More specific review questions were:
(i) What are the characteristics of the spiritual care interventions: individual and/or group, name, resources, objectives, frequency, duration, theoretical reference of the spiritual care intervention?
(ii) Which members of the palliative care team developed the intervention?
(iii) What were the dependent variables and the instruments used to measure outcomes?
(iv) Which outcomes were found after the intervention was implemented?
Search strategy
The search was conducted from October 2022 to January 2023. The search strategy aimed to find published and unpublished studies. A 3-step search strategy was used in this review. The first step is a limited search on a small number of keywords in CINAHL and PsycINFO. Following this search, an analysis of the words in the titles and abstracts and the indexed terms was undertaken. The second step of the search strategy involved the use of the planned databases using all identified keywords and index terms extracted. The third step of the search strategy included articles from the reference lists of published studies and gray literature. A librarian contributed to develop the search strategy. Studies published in any language and in any year were considered for inclusion in this review. The full search strategies are provided in Appendix I and II.
The search terms of this review included: “Palliative Care,” “End of Life Care,” “Spiritual Care,” “Spiritual Intervention,” “Spiritual Needs,” “Suffering,” “Adult,” and “Older Adult.”
Information sources
The databases consulted were: CINAHL, PsycINFO (APA), MEDLINE/PUBMED, EMBASE (Elsevier), Scopus (Elsevier), ProQuest, Cochrane Library (John Wiley), LILACS, and CUIDEN. The search for unpublished studies included: RCAAP; DART-Europe; Tesis Capes; Cybertesis; TESEO and ProQuest. We also manually searched studies using other sources. The search on gray literature included WHO, health departments of different countries, such as the UK, Australia, Canada, Spain, United States, and Google Scholar. Other important sources of information such as peer-reviewed studies were considered. The authors of 1 primary study were contacted for full text access, however no response was obtained.
Study selection
Studies were included or excluded guided by the inclusion and exclusion criteria based on the Population, Concept, and Context framework in Table 1. All identified citations were copied and uploaded into ENDNOTE and duplicates were removed using the software and double validation by 2 reviewers. Retrieved articles were imported into the RAYYAN review manager for reviewing and screening. Two independent reviewers screened the titles and abstracts to identify potentially relevant articles. The 2 independent reviewers continued to assess the full texts of those relevant articles for including or excluding them in/from the review. Disagreements between the 2 reviewers were resolved through discussion or with a third reviewer, when required. The author further searched the reference list of included articles to identify any additional relevant articles.
Inclusion and exclusion criteria
Data extraction
The data extracted was in accordance with JBI and aligned with the objectives and question of this study. Two tables were developed by the research team for data summarizing. General information included author, year of publication, country of study, type of study (quantitative, qualitative, mixed, case study, report, review), population, and study setting (Table 2).
Summary of included studies and findings of spiritual care interventions
TP = target population; A = age; SS = sample size; YO = years old; NA = not appear; PC = palliative care; RCT = randomized controlled trial; CS = case study; F = frequency; D = duration; TM = theoretical model; SECPAL = Spirituality Group of the Spanish Society of PC; QS = qualitative study; MM = mix methods; SLR = systematic literature review; OS = observational study; QES = quasi-experimental study.
Other data extracted relevant to the research questions for the purposes of this publication are shown in Table 2, including name of the intervention, information of the spiritual care intervention characteristics (description, frequency, duration, and conceptual framework or theoretical model), and who from the palliative careteam carried out the intervention. The assessment tools for measuring suffering or spiritual needs were also mapped and the main results obtained were described in the findings. Three reviewers extracted data from included studies independently, and disagreements were resolved through discussion and consulting the third author. Any disagreements that arose between the reviewers were resolved through discussion or with a third reviewer.
Data presentation
The data were extracted from the included documents using a Microsoft Excel worksheet based on a preliminary document. This instrument was developed in accordance with the preliminary search and review questions. Two authors independently selected the data, and a third author was involved in case of disagreement.
Results
The electronic database search identified 1,254 studies, of which 401 were duplicates. The title and abstract screening excluded 777 studies. After full-text assessment, 31 studies were further excluded and 25 additional studies were identified through manual search via other sources: websites, organizations, and experts recommended. Finally, a total of 47 studies were included in this review. Figure 1 shows the PRISMA flow diagram (Page et al. Reference Page, McKenzie and Bossuyt2021) which describes the flow of decisions of this process and the exclusion reasons of studies.
PRISMA flow diagram.
Characteristics of the included studies
All articles selected in this scoping review were published between 2003 and 2022. Of 47 studies included in this review, 14 used a quantitative design, 8 mixed-methods, 5 qualitative, 9 case studies, and 11 reviews and reports. Regarding their origin, most studies were conducted in the United States (n = 14), followed by Spain (n = 8) and Australia (n = 4), and other countries such as Japan (n = 3), Malaysia, Brazil, the Netherlands, and the United Kingdom, with 2 articles each. One study found from each of: Germany, Italy, Switzerland, Belgium, Portugal, China, Pakistan, New Zealand, and Chile, and a report from Latin America. Most of the studies were written in English (n = 39), followed by Spanish (n = 7), and 1 article in Basque. All patients in the populations had an advanced incurable disease. The study settings varied and included communities, hospices, hospitals, palliative care units, and nursing homes. Table 2 presents a summary of the main characteristics of included studies and the main findings of the scoping review.
Spiritual care interventions for patients in palliative care
A variety of spiritual care interventions were identified. All interventions were individual, mostly based on a theoretical model and with a holistic approach. In total, 8 types of spiritual care interventions were identified to assess spiritual needs and/or alleviate suffering. They included: conversations between the patient and a team member (n = 33), religious practice interventions (n = 10), therapeutic presence (n = 8), music therapy (n = 6), multidisciplinary interventions (n = 4), guided meditation (n = 3), art therapy (n = 2), and combined interventions (n = 7) with multiple components such as music, art, integrative therapy, among others.
Guided conversations are interventions that are carried out by the palliative care team member and use a questionnaire of semi-structured or structured questions based on a specific theoretical model to facilitate dialogue and reflection with the patient. These interventions include legacy intervention (Allen et al. Reference Allen, Harris and Burgio2014), life review (Abad and López Reference Abad and López2020; Ando et al. Reference Ando, Morita and Akechi2010; Balboni et al. Reference Balboni, Fitchett and Handzo2017; Kearney et al. Reference Kearney, Fischer and Groninger2017; Kwan et al. Reference Kwan, Chan and Choi2019; Silva et al. Reference Silva, Caldeira and Coelho2020; Steinhauser et al. Reference Steinhauser, Alexander and Byock2008; Vuksanovic et al. Reference Vuksanovic, Green and Dyck2017a, Reference Vuksanovic, Green and Morrissey2017b; Wierstra et al. Reference Wierstra, Liefbroer and Post2023), meaning-centered therapy (Guerrero-Torrelles et al. Reference Guerrero-Torrelles, Monforte-Royo and Rodríguez-Prat2017; Kearney et al. Reference Kearney, Fischer and Groninger2017; Rosenfeld et al. Reference Rosenfeld, Saracino and Tobias2017; Universities of Hull and Aberdeen 2010), counselling (Amonoo et al. Reference Amonoo, Harris and Murphy2020; Rudilla et al. Reference Rudilla, Oliver and Galiana2015; Slootweg Reference Slootweg2013; Tang et al. Reference Tang, Nguyen and Bruera2020), Kibo therapy (Soto-Rubio et al. Reference Soto-Rubio, Perez-Marin and Rudilla2020), dignity therapy (Chochinov et al. Reference Chochinov, Hack and Hassard2005; Vuksanovic et al. Reference Vuksanovic, Green and Dyck2017a, Reference Vuksanovic, Green and Morrissey2017b), outlook intervention (Keall et al. Reference Keall, Butow and Steinhauser2013), spiritual conversation (Milligan Reference Milligan2011; Vermandere et al. Reference Vermandere, Bertheloot and Buyse2013), and forgiveness facilitation intervention (Silva et al. Reference Silva, Caldeira and Coelho2020). In addition, there are conversations through spiritual needs and spiritual suffering assessment tools that have both a therapeutic approach and use semi-structured assessment questionnaires (Balboni et al. Reference Balboni, Fitchett and Handzo2017; Benito et al. Reference Benito, Dones and Babero2016; Espinel and Colautti Reference Espinel and Colautti2020; Gomez-Castillo et al. Reference Gomez-Castillo, Hirsch and Groninger2015; Ichihara et al. Reference Ichihara, Ouchi and Okayama2019; Kestenbaum et al. Reference Kestenbaum, Shields and James2017; Milligan Reference Milligan2011; MINSAL 2022; Serrano-Pejenaute and Ortiz-Jauregui Reference Serrano-Pejenaute and Ortiz-Jauregui2018; Slootweg Reference Slootweg2013; Tamura et al. Reference Tamura, Ichihara and Maetaki2006; Walker and Waterworth Reference Walker and Waterworth2017). On the other hand, there are unstructured conversations that are characterized by free listening to the patient’s needs, acknowledging the patient’s problem and alleviating the patient’s spiritual suffering (Baumrucker Reference Baumrucker2003; Tordable Reference Tordable2015).
Interventions of religious practices (Balboni et al. Reference Balboni, Fitchett and Handzo2017; Baumrucker Reference Baumrucker2003; da Silva et al. Reference da Silva, da Araújo and de Cardoso2015; Gomez-Castillo et al. Reference Gomez-Castillo, Hirsch and Groninger2015; Ichihara et al. Reference Ichihara, Ouchi and Okayama2019; Kearney et al. Reference Kearney, Fischer and Groninger2017; Makhani Reference Makhani2015; Renz et al. Reference Renz, Schütt Mao and Cerny2005; Tang et al. Reference Tang, Nguyen and Bruera2020; Universities of Hull and Aberdeen 2010) include the intervention of a chaplain or facilitation of practices by a member of staff.
There is therapeutic presence, as another type of intervention described in some studies from different countries: Spain, New Zealand, United Kingdom, Chile, USA, and Latin America (Abad and López Reference Abad and López2020; Benito et al. Reference Benito, Dones and Babero2016; Espinel and Colautti Reference Espinel and Colautti2020; Kearney et al. Reference Kearney, Fischer and Groninger2017; Milligan Reference Milligan2011; MINSAL 2022; Universities of Hull and Aberdeen 2010; Walker and Waterworth Reference Walker and Waterworth2017). “Presence” is understood as giving time and being physically with the patient. It is also called “compassionate presence” (Benito et al. Reference Benito, Dones and Babero2016; Kearney et al. Reference Kearney, Fischer and Groninger2017) and “being there” (MINSAL 2022). It highlights the importance of the therapist’s presence as a form of spiritual care to facilitate the transcendence of suffering. In Latin America, compassionate presence is spoken of as a fundamental therapeutic tool.
Interventions through music are guided by the music therapist, who explores feelings in the person and significant aspects of life. It also uses predefined pre- and post-intervention questions (Ganzini et al. Reference Ganzini, Rakoski and Cohn2015; Pawuk and Schumacher Reference Pawuk and Schumacher2010; Peng et al. Reference Peng, Baxter and Lally2019; Warth et al. Reference Warth, Koehler and Brehmen2021). There are interventions by the interdisciplinary team (Balboni et al. Reference Balboni, Fitchett and Handzo2017; da Silva et al. Reference da Silva, da Araújo and de Cardoso2015; Sun et al. Reference Sun, Kim and Irish2016; Tang et al. Reference Tang, Nguyen and Bruera2020), such as Mindfulness interventions which are guided interventions that allow the patient to transform suffering by changing what the mind is processing (Lim et al. Reference Lim, Ang and Lam2021; Poletti et al. Reference Poletti, Razzini and Ferrari2019; Yik et al. Reference Yik, Ling and Ai2021). Art interventions are another way to address emotional and spiritual needs (Collette and Pascual Reference Collette and Pascual2010; Renz et al. Reference Renz, Schütt Mao and Cerny2005). Finally, Combination interventions combine any of the methods described above (Amonoo et al. Reference Amonoo, Harris and Murphy2020; De Araújo et al. Reference De Araújo, Giglio and de Mattos Pimenta2006; Kearney et al. Reference Kearney, Fischer and Groninger2017; Renz et al. Reference Renz, Schütt Mao and Cerny2005; Tang et al. Reference Tang, Nguyen and Bruera2020; Universities of Hull and Aberdeen 2010; Wierstra et al. Reference Wierstra, Liefbroer and Post2023).
Characteristics of the spiritual care interventions
All interventions were characterized as individual. The objectives of the interventions depended on the type of study conducted. For example, quantitative studies sought to examine the effectiveness or efficacy of an intervention or to assess the feasibility and acceptability of an intervention. The other types of studies remain at a more descriptive level of existing interventions.
Quantitative and mixed studies provide more information regarding the frequency and duration of interventions, unlike the other types of studies that do not present structured interventions. Specifically, the number of sessions (frequency of intervention) ranged between 1 and 11 sessions, separated by different intervals of time. The duration of the interventions ranged from 5 min to 3 h.
Regarding theoretical reference, multiple models exist depending on the type of intervention. A total of 39 out of 47 studies reported theoretical models. The main ones described were Christina model Puchalski’s in the United States stands out with the most references (n = 11) (Abad and López Reference Abad and López2020; Balboni et al. Reference Balboni, Fitchett and Handzo2017; Gomez-Castillo et al. Reference Gomez-Castillo, Hirsch and Groninger2015; Makhani Reference Makhani2015; Milligan Reference Milligan2011; MINSAL 2022; Serrano-Pejenaute and Ortiz-Jauregui Reference Serrano-Pejenaute and Ortiz-Jauregui2018; Slootweg Reference Slootweg2013; Tang et al. Reference Tang, Nguyen and Bruera2020; Universities of Hull and Aberdeen 2010; Wierstra et al. Reference Wierstra, Liefbroer and Post2023). In Spain, the spiritual model of SECPAL stands out (n = 5) (Benito et al. Reference Benito, Dones and Babero2016; Milligan Reference Milligan2011; Rudilla et al. Reference Rudilla, Oliver and Galiana2015; Serrano-Pejenaute and Ortiz-Jauregui Reference Serrano-Pejenaute and Ortiz-Jauregui2018; Soto-Rubio et al. Reference Soto-Rubio, Perez-Marin and Rudilla2020). In the Netherlands, there is the “Ars Moriendi model” (Slootweg Reference Slootweg2013; Vermandere et al. Reference Vermandere, Bertheloot and Buyse2013). For the interventions related to the meaning of life, Viktor Frank’s logotherapeutic model (n = 3)(Amonoo et al. Reference Amonoo, Harris and Murphy2020; Guerrero-Torrelles et al. Reference Guerrero-Torrelles, Monforte-Royo and Rodríguez-Prat2017; Rosenfeld et al. Reference Rosenfeld, Saracino and Tobias2017) and Park (Guerrero-Torrelles et al. Reference Guerrero-Torrelles, Monforte-Royo and Rodríguez-Prat2017; Wierstra et al. Reference Wierstra, Liefbroer and Post2023) and Folkman (Allen et al. Reference Allen, Harris and Burgio2014; Guerrero-Torrelles et al. Reference Guerrero-Torrelles, Monforte-Royo and Rodríguez-Prat2017) developed the “the meaning Making Model.” In Japan, there is the spiritual pain framework of Hisayuki Murata (Ichihara et al. Reference Ichihara, Ouchi and Okayama2019; Tamura et al. Reference Tamura, Ichihara and Maetaki2006) and Shoma Morita model (Guerrero-Torrelles et al. Reference Guerrero-Torrelles, Monforte-Royo and Rodríguez-Prat2017).
Nursing Intervention Classification was another frame of reference for some studies (Abad and López Reference Abad and López2020; Silva et al. Reference Silva, Caldeira and Coelho2020; Tordable Reference Tordable2015). Other interventions are based on Erik Erikson’s concepts of generativity and ego integrity (Keall et al. Reference Keall, Butow and Steinhauser2013; Vuksanovic et al. Reference Vuksanovic, Green and Dyck2017a, Reference Vuksanovic, Green and Morrissey2017b) and there are several other interventions with different currents in psychology such as Jung, Chodorow, Vaughn, Wilber (among others), and psychiatry such as Kubler-Ross. In meditation therapies, the models of Kabat-Zinn, Slazberg, Bishop, and the Cognitive constructivist framework were prominent (Lim et al. Reference Lim, Ang and Lam2021; Poletti et al. Reference Poletti, Razzini and Ferrari2019; Yik et al. Reference Yik, Ling and Ai2021). The founder of the field in music therapy was Therese Schroeder-Sheker (Ganzini et al. Reference Ganzini, Rakoski and Cohn2015), and Bonny Method (Pawuk and Schumacher Reference Pawuk and Schumacher2010), and Malchiodi and Wood in art therapy (Collette and Pascual Reference Collette and Pascual2010). Table 2 displays the characteristics of the spiritual care interventions.
Health team members
Regarding the question “Which members of the health-care team provide spiritual care?” the results demonstrate that in most of the studies (n = 19), spiritual care can be provided by any member of the interdisciplinary team, but the most involved are nurses, physicians, and psychologists. Some interventions were delivered by specific professionals: 10 interventions were delivered by nurses (Abad and López Reference Abad and López2020; Ichihara et al. Reference Ichihara, Ouchi and Okayama2019; Keall et al. Reference Keall, Butow and Steinhauser2013; Kwan et al. Reference Kwan, Chan and Choi2019; Makhani Reference Makhani2015; Milligan Reference Milligan2011; Sun et al. Reference Sun, Kim and Irish2016; Tamura et al. Reference Tamura, Ichihara and Maetaki2006; Tordable Reference Tordable2015; Walker and Waterworth Reference Walker and Waterworth2017), 5 were provided by psychologists (Renz et al. Reference Renz, Schütt Mao and Cerny2005; Rosenfeld et al. Reference Rosenfeld, Saracino and Tobias2017; Rudilla et al. Reference Rudilla, Oliver and Galiana2015; Vuksanovic et al. Reference Vuksanovic, Green and Dyck2017a, Reference Vuksanovic, Green and Morrissey2017b), 4 were given by music therapists (Ganzini et al. Reference Ganzini, Rakoski and Cohn2015; Pawuk and Schumacher Reference Pawuk and Schumacher2010; Peng et al. Reference Peng, Baxter and Lally2019; Warth et al. Reference Warth, Koehler and Brehmen2021), 3 were delivered by physicians (Baumrucker Reference Baumrucker2003; Lim et al. Reference Lim, Ang and Lam2021; Yik et al. Reference Yik, Ling and Ai2021), 4 were offered by chaplains (Baumrucker Reference Baumrucker2003; Kearney et al. Reference Kearney, Fischer and Groninger2017; Kestenbaum et al. Reference Kestenbaum, Shields and James2017; Wierstra et al. Reference Wierstra, Liefbroer and Post2023), 1 was given by an art therapist (Collette and Pascual Reference Collette and Pascual2010), 1 was offered by volunteers (Allen et al. Reference Allen, Harris and Burgio2014), and another intervention of spiritual care was delivered by a nonphysician clinician (Steinhauser et al. Reference Steinhauser, Alexander and Byock2008).
Assessment tools to assess suffering and/or spiritual needs in palliative care
Assessment instruments used as resources included: sociodemographic, clinical, psychological, and spiritual tools, and quality of life questionnaires. The instruments were used in quantitative studies, mixed-methods studies, and reports. The instruments were not required in qualitative studies and cases of patients, because numeric systems are not used in these types of studies.
Concerning clinical tools, the Edmonton Symptom Assessment Scale was the most used instrument (Chochinov et al. Reference Chochinov, Hack and Hassard2005; Kestenbaum et al. Reference Kestenbaum, Shields and James2017; Peng et al. Reference Peng, Baxter and Lally2019; Soto-Rubio et al. Reference Soto-Rubio, Perez-Marin and Rudilla2020). The questionnaire is used to rate symptoms experienced by cancer patients, encompassing pain, tiredness, nausea, depression, anxiety, drowsiness, appetite, well-being, and shortness of breath. Psychological tools were widely used in the selected studies and the prevalent scales found in the studies refers to anxiety and depression. Most of the studies applied spiritual tools to evaluate patients’ spiritual well-being, such as the Functional Assessment of Chronic Illness Therapy-Spiritual (FACIT-Sp) Scale (Ando et al. Reference Ando, Morita and Akechi2010; Ichihara et al. Reference Ichihara, Ouchi and Okayama2019; Kestenbaum et al. Reference Kestenbaum, Shields and James2017; Lim et al. Reference Lim, Ang and Lam2021; Milligan Reference Milligan2011; Sun et al. Reference Sun, Kim and Irish2016; Universities of Hull and Aberdeen 2010; Warth et al. Reference Warth, Koehler and Brehmen2021; Yik et al. Reference Yik, Ling and Ai2021), and the FICASpiritual Assessment Tool (F: Faith or Beliefs; I: Importance or influence; C: Community; A: Address) (Balboni et al. Reference Balboni, Fitchett and Handzo2017; Espinel and Colautti Reference Espinel and Colautti2020; Gomez-Castillo et al. Reference Gomez-Castillo, Hirsch and Groninger2015; Milligan Reference Milligan2011; Serrano-Pejenaute and Ortiz-Jauregui Reference Serrano-Pejenaute and Ortiz-Jauregui2018; Slootweg Reference Slootweg2013; Universities of Hull and Aberdeen 2010; Wierstra et al. Reference Wierstra, Liefbroer and Post2023). Although FACIT-Sp and FICA were more common in the included studies, other scales were also relevant, including the GES (Grupo Espiritualidad SECPAL: Spirituality Group SECPAL) Questionnaire (Espinel and Colautti Reference Espinel and Colautti2020; MINSAL 2022; Rudilla et al. Reference Rudilla, Oliver and Galiana2015; Serrano-Pejenaute and Ortiz-Jauregui Reference Serrano-Pejenaute and Ortiz-Jauregui2018; Soto-Rubio et al. Reference Soto-Rubio, Perez-Marin and Rudilla2020) and SPIRIT (Spiritual History) (Balboni et al. Reference Balboni, Fitchett and Handzo2017; Serrano-Pejenaute and Ortiz-Jauregui Reference Serrano-Pejenaute and Ortiz-Jauregui2018; Slootweg Reference Slootweg2013; Universities of Hull and Aberdeen 2010). Another way of assessing spiritual suffering was through the Pictogram suffering (Lim et al. Reference Lim, Ang and Lam2021; Yik et al. Reference Yik, Ling and Ai2021), and through the Spiritual Suffering Assessment Worksheet (Tamura et al. Reference Tamura, Ichihara and Maetaki2006).
Measurement of outcomes after intervention
The outcomes of spiritual interventions can approach different areas of the human being. In the spiritual dimension, the quantitative studies in this review shows interventions which increased patients’ spiritual well-being (Kestenbaum et al. Reference Kestenbaum, Shields and James2017; Lim et al. Reference Lim, Ang and Lam2021; Rudilla et al. Reference Rudilla, Oliver and Galiana2015; Sun et al. Reference Sun, Kim and Irish2016; Tamura et al. Reference Tamura, Ichihara and Maetaki2006; Warth et al. Reference Warth, Koehler and Brehmen2021; Yik et al. Reference Yik, Ling and Ai2021), alleviate suffering (Allen et al. Reference Allen, Harris and Burgio2014; Warth et al. Reference Warth, Koehler and Brehmen2021; Yik et al. Reference Yik, Ling and Ai2021), and increased ego integrity (Vuksanovic et al. Reference Vuksanovic, Green and Dyck2017a; Warth et al. Reference Warth, Koehler and Brehmen2021). Other interesting outcomes were reinforced spirituality (Soto-Rubio et al. Reference Soto-Rubio, Perez-Marin and Rudilla2020), increased spiritual assessment and treatment (Gomez-Castillo et al. Reference Gomez-Castillo, Hirsch and Groninger2015), end of life preparation (Ando et al. Reference Ando, Morita and Akechi2010; Steinhauser et al. Reference Steinhauser, Alexander and Byock2008), and acceptance (Yik et al. Reference Yik, Ling and Ai2021).
The main outcomes in studies with mixed-methods were related to improvement in physical and psychological symptoms that indicate suffering, such as improvements in breathing, reduced anxiety and depression, and reduced pain (Ganzini et al. Reference Ganzini, Rakoski and Cohn2015; Kwan et al. Reference Kwan, Chan and Choi2019; Peng et al. Reference Peng, Baxter and Lally2019; Renz et al. Reference Renz, Schütt Mao and Cerny2005). Furthermore, in the spiritual dimension, interventions presented improvement of spiritual well-being, provided improved sense of meaning, purpose, and continued sense of worth, and increased sense of wholeness, personal integrity, inner peace, and changed attitude toward life and death (Chochinov et al. Reference Chochinov, Hack and Hassard2005; Kwan et al. Reference Kwan, Chan and Choi2019; Renz et al. Reference Renz, Schütt Mao and Cerny2005).
Qualitative studies introduced the perspective of the patient and the professionals about spiritual care. They also presented the importance of establishing a relationship between the patient and health-care professional to improve care effectiveness (Abad and López Reference Abad and López2020; Tamura et al. Reference Tamura, Ichihara and Maetaki2006; Vermandere et al. Reference Vermandere, Bertheloot and Buyse2013; Vuksanovic et al. Reference Vuksanovic, Green and Morrissey2017b; Walker and Waterworth Reference Walker and Waterworth2017). The case studies presented relevant findings related to the treatment of spiritual pain and the recognition of spiritual needs (Amonoo et al. Reference Amonoo, Harris and Murphy2020; Baumrucker Reference Baumrucker2003; Benito et al. Reference Benito, Dones and Babero2016; Collette and Pascual Reference Collette and Pascual2010; da Silva et al. Reference da Silva, da Araújo and de Cardoso2015; Kearney et al. Reference Kearney, Fischer and Groninger2017; Tang et al. Reference Tang, Nguyen and Bruera2020; Tordable Reference Tordable2015).
Finally, the reports and literature review made the context of this type of care clear. The findings support that even though a substantial literature base for spiritual care can be found, many tools have been developed to detect, assess, and address spiritual needs, but there is a need to educate and raise awareness among professionals (Serrano-Pejenaute and Ortiz-Jauregui Reference Serrano-Pejenaute and Ortiz-Jauregui2018). These studies describe interventions which led to improved spiritual care, and reduced symptoms of psychological and spiritual distress (Balboni et al. Reference Balboni, Fitchett and Handzo2017; Guerrero-Torrelles et al. Reference Guerrero-Torrelles, Monforte-Royo and Rodríguez-Prat2017; Silva et al. Reference Silva, Caldeira and Coelho2020; Wierstra et al. Reference Wierstra, Liefbroer and Post2023), increased quality of life (Guerrero-Torrelles et al. Reference Guerrero-Torrelles, Monforte-Royo and Rodríguez-Prat2017), and well-being, peace, and hope (Silva et al. Reference Silva, Caldeira and Coelho2020).
Discussion
This scoping review analyzed 47 studies describing different interventions to assess the spiritual needs and/or alleviate suffering of adult and older adult patients in palliative care. This review provides systematic information for palliative care teams in different contexts and shows the need for further research on interventions to alleviate suffering and to report in detail the characteristics of these interventions for recommendations for clinical practice and/or to build on what has already been done to develop new interventions. A group of experts developed a Template for Intervention Description and Replication (TIDieR) checklist and guide (Hoffmann et al. Reference Hoffmann, Glasziou and Boutron2014) to improve the completeness of reporting, and ultimately the replicability of interventions.
The approach to spiritual suffering is a broad problem that needs to be addressed and defined when designing the intervention. The loss of meaning in life, the rupture of the person’s relationship with their inner world, the lack of inner peace, the loss of relationships with significant people, and the loss of faith or beliefs are different manifestations of suffering, and it has been shown that one of the most frequent intervention forms is through dialogue in a conversation with predetermined questions based on a model or theoretical referential that supports it. Countries such as the United States and Spain are benchmarks for what is currently published. Many countries are not mentioned and the information they report is brief and general. There is a need to know how to operationalize spiritual care. This review sheds light on this.
Sidani and Braden (Reference Sidani and Braden2021) propose a methodology that can contribute to the operationalization of complex health interventions. The initial stage involves gaining a thorough understanding of the problem, and this review highlights a significant gap in this aspect. It is crucial to comprehend suffering to effectively address it. Suffering, being a broad and intricate concept, possesses various attributes that require definition and analysis before the design of an intervention. This approach is essential for evaluating the future effectiveness and impact of spiritual care on individuals’ health. It becomes paramount to distinguish between different types of suffering, which are denoted in various terms and may lead to confusion for the reader. These include spiritual suffering, spiritual distress, existential suffering, spiritual pain, and total pain. Clarity is needed regarding whether distinctions exist between these terms or if they represent the same concept expressed in different ways. This clarification is essential for establishing a common language in future systematic reviews concerning spiritual care.
The phenomenon of spiritual suffering is profound and more specific, necessitating the development of instruments to assess this health issue and ascertain whether the provided intervention effectively addresses the problem.
The encounter between patient and therapist allows the patient to reestablish a sense of connection, achieving greater awareness on a personal level and in the relationship with others (Guerrero-Torrelles et al. Reference Guerrero-Torrelles, Monforte-Royo and Rodríguez-Prat2017), facilitating relief in difficult moments. These conversations not only influence the spiritual level of the person, but also have implications in a holistic way at the biopsychosocial level, so there are multiple assessment instruments reported in the studies. The interventions measured psychological aspects such as anxiety and depression, quality of life, clinical symptoms, and spiritual well-being. Spiritual well-being considers the aspects of meaning of life, peace, and faith, which when diminished can be interpreted as not having spiritual well-being, but it is not specified as suffering per se. However, the concrete measurement of suffering as an individual concept was seen in few studies through the suffering pictogram (Lim et al. Reference Lim, Ang and Lam2021; Yik et al. Reference Yik, Ling and Ai2021).
The interdisciplinary approach in palliative care allows patients’ individuality and multidimensionality to be preserved, because different professionals with specific competences together aim at healing or relieving (da Silva et al. Reference da Silva, da Araújo and de Cardoso2015). In our study, many of the spiritual interventions could be offered by any member of the team, although nurses stood out the most probably because this professional category is at the patient’s side most of the time. Music therapists, art therapists, chaplains, and volunteers are also part of the team, demonstrating the importance of the art and faith in improving spiritual well-being.
A spiritual care intervention that is little known to some health-care professional is the “therapeutic presence,” also referred as “Healing presence” in some studies (Ramezani et al. Reference Ramezani, Ahmadi and Mohammadi2014). In Spain it is called “Presencia terapéutica” and is defined as a way of being with the patient that enhances the therapeutic relationship. This approach allows practitioners to remain stable, open, attentive, and available to whatever arises in the encounter, facilitating the welcoming of the experiences of both the patient and the practitioner (Benito and Mindeguía Reference Benito and Mindeguía2021). Puchalski et al. (Reference Puchalski, King and Ferrell2018) calls it “compassionate presence,” emphasizing listening to the patient’s spiritual pain with compassion and without judgement. This practice helps patients gain a deeper understanding of their suffering and find peace over time in the presence of individuals who can listen in this empathic way. The practice of compassionate presence can be characterized as “being fully present with another as a witness to the patient’s suffering.”
The patient’s spiritual domain is a subjective topic, but there are some tools that can be useful to assess a patient’s spiritual needs and suffering. Clinical, psychological, spiritual tools, and quality of life questionnaires were found in our study. Regarding spiritual tools, FICA and FACIT-Sp were the most relevant in the included studies. The FICA Spiritual History Tool is an acronym that includes Faith, Belief, Meaning; Importance and Influence; Community; Address in Care (Puchalski et al. Reference Puchalski, King and Ferrell2018). FACIT-Sp was created to measure spiritual well-being in cancer patients, is not limited to religious tradition and includes 2 subscales: meaning/peace and faith (Peterman et al. Reference Peterman, Fitchett and Brady2002). The use of spiritual tools can be a great strategy to build a trust bond with the patient and a pathway to plan spiritual care.
There is a lack of studies with interventions which more precisely describe the intervention’s characteristics, including the duration, and the optimal frequency to achieve the desired outcomes. The duration of the intervention effect is also not described. On the other hand, it is striking that there are no interventions to alleviate suffering with the use of technology support, which could be an opportunity and innovation to design interventions with a technological approach, especially in the current times. It is important to consider the training of the professional implementing the intervention. Another opportunity for further research is in relation to the operationalization of the problem of spiritual suffering. The concept is so broad that this could explain the various interventions and their multiple measurement instruments. However, there are also specific interventions that address the problem of loss of meaning in life (Amonoo et al. Reference Amonoo, Harris and Murphy2020; Guerrero-Torrelles et al. Reference Guerrero-Torrelles, Monforte-Royo and Rodríguez-Prat2017; Rosenfeld et al. Reference Rosenfeld, Saracino and Tobias2017), lack of forgiveness and lack of relationship with oneself or a loved one (Silva et al. Reference Silva, Caldeira and Coelho2020), seeking to achieve relief from suffering.
The spiritual dimension and its components have been increasingly studied and described in recent years. However, more studies are needed to demonstrate the efficacy and impact of structured spiritual interventions in health care, which are necessary to help the patient and family to alleviate suffering and promote peace at the end of life.
Strengths and limitations
One of the strengths of this review is that it brings together spiritual care interventions from different parts of the world and has allowed us to integrate information from a range of different studies. There are limitations of this scoping review. We acknowledge that this review is limited to patients in palliative care only. All studies with interventions in patients with advanced cancer disease in the oncology service were not included. A serious limitation was that the exclusion criteria of the studies did not explicitly exclude pharmacological interventions, however, 2 studies that sought to alleviate suffering with drugs and other hallucinogens appeared and were excluded because drugs are not part of the study. We have included multiple databases, gray literature, and governmental websites to provide a comprehensive scope of the phenomenon studied. However, we did not assess the quality of the included studies or the quality of the gray literature, as this is not the focus of this type of review.
Conclusion
This scoping review provides a general analysis and mapping of current spiritual care interventions in palliative care for adult and older adult patients to alleviate suffering and/or assess spiritual needs. A gradual increase of studies has been observed in this review, moving from a descriptive approach, to demonstrating with evidence the effects of interventions at the biopsychosocial and spiritual level. The different interventions presented in this review can be a contribution to palliative care teams as they show how interventions are delivered, the contexts, the professionals involved, and the effects they have and could have.
Supplementary material
The supplementary material for this article can be found at https://doi.org/10.1017/S1478951524000592.
Acknowledgments
We would like to thank Juliana Takahashi and Fabiana Gulin Longhi, librarians at the University of Sao Paulo Brazil, for their willingness and assistance in the search strategy.
Author contributions
All authors designed the study, analyzed the data, drafted the manuscript, critically revised the manuscript, and approved the final version.
Funding
This study was financed in part by the Coordenação de Aperfeiçoamento de Pessoal de Nível Superior – Brasil (CAPES) – Finance Code 001.
Competing interests
The author(s) declare none.
Open access
