Abstract
Spiritual care specialists on the palliative care team are uniquely trained in performing spiritual assessments, a skillset necessary for identifying and treating spiritual distress (SD). While the importance of addressing SD as part of whole-person care has been explored in patients with diagnoses such as cancer and heart failure, the prevalence and treatment of SD in patients with dyspnea are not present in the literature. Using valid and reliable measurement tools to assess SD in severe dyspnea could improve patient-centered care at end-of-life, referring patients to spiritual care specialists and incorporating identified needs into the overall care plan. This paper reviews three tools designed to measure SD in patients with dyspnea. One tool, the Spiritual Distress Scale, has the greatest specificity and lowest patient burden. Recommendations for future research include creating and validating a shorter version of the tool to further reduce the burden on dyspneic patients.
Introduction
At its best, palliative care is designed to support patients encountering deep suffering in all domains (physical, social, spiritual, psychological) at the end of life, which Saunders dubbed “total pain” (Saunders, 2001). Yet, from its inception, palliative care has often-neglected the spiritual needs of seriously-ill patients (Saunders, 2001). Current research continues to highlight the unmet spiritual needs of palliative care patients and the ongoing importance of integrating spiritual care into treatment (Balboni et al., 2022; el Nawawi et al., 2012). To address patients’ unmet spiritual needs, the National Consensus Project Guidelines for Quality Palliative Care recommends that a spiritual care specialist complete a spiritual assessment, and spiritual needs should be integrated into the care plan (National Consensus Project for Quality Palliative Care, 2018). The recommendation is important since research has indicated that illness is a spiritual event, and most patients express spiritual concerns during extended illness (Balboni & Balboni, 2018). For this paper, spiritual distress (SD) will be defined in alignment with the North American Nursing Diagnosis Association (NANDA) definition as “impaired ability to experience and integrate meaning and purpose in life through the individual's connectedness with self, others, art, music, literature, nature, or a power greater than oneself” (Schultz et al., 2017, p. 66).
In patients who have a cancer diagnosis, for example, up to a quarter of seriously-ill oncology patients experience SD (Schultz et al., 2017). Research regarding SD in other types of chronic or life-threatening illnesses is lacking. Selman, et al. recommend further research into the SD levels of congestive heart failure (CHF) patients and potential non-pharmacological interventions that may benefit CHF patients, especially at the end of life when dyspnea is significant (Selman et al., 2007). Broadening the scope of SD research, specifically into serious illnesses that cause dyspnea, such as (CHF), Chronic Obstructive Pulmonary Disease (COPD), COVID-19, Interstitial Lung Disease (ILD), and chronic asthma, would expand understanding of how serious illness affects spiritual needs (Bahramnezhad & Asgari, 2021; Ferrell et al., 2020; Selman et al., 2007). Completing such research would require valid and reliable tools to measure SD in this group of patients. Thus, this paper aims to review the psychometric properties of measurement instruments that could measure spiritual needs in patients with dyspnea due to chronic or life-threatening illnesses.
Assessing for SD in palliative care patients with dyspnea is an advanced spiritual care skill best performed by the experienced palliative care chaplain. Jeuland et al. (2017) surveyed chaplains working in palliative care and found a high level of experience in addressing SD in patient care-half (49%), regularly assisting patients suffering from SD. The same study found that chaplains integrated into palliative care teams also regularly addressed goals of care in supporting patients and families. While other team members can be trained as spiritual care generalists and equipped to perform a spiritual screening, the spiritual assessment is administered by a board-certified chaplain (Puchalski, 2010). With the chaplain as a palliative care interdisciplinary team member, results from the assessment can be shared with the team and incorporated into the overall care plan.
Literature Review
To identify tools appropriate for measuring SD in patients with severe dyspnea, a literature search was conducted across multiple databases in September 2022, including PubMed, CINAHL, EMBASE, and PsycInfo. Search terms included spiritual distress assessment and palliative care, allowing for synonyms and similar words. Inclusion criteria required research articles detailing primary development and validation studies for measurement tools and the tools’ ability to measure SD. Exclusion criteria included a lack of specificity in measuring SD (i.e., tools measuring existential distress or spiritual pain) and the length of the measure. The use of valid and reliable tools in research with seriously-ill individuals is of utmost importance to ensure the integrity of the results and honor the participant's efforts. For patients with debilitating dyspnea, it is critical to ensure the length of the measure itself is as succinct as possible to reduce patient burden and support the reliability of results (Devon et al., 2007). With this in mind, the briefest versions of previously validated measures were included in this review, even if lengthier tools were available.
Findings
The following three instruments were identified and will be reviewed in subsequent sections: the Spiritual Distress Assessment Tool (SDAT), the Spiritual Distress Scale (SDS), and the Functional Assessment of Chronic Illness Therapy-Spiritual Well-Being-12 (FACIT-Sp-12). These tools are summarized and compared in Table 1.
Spiritual Distress Measurement Instruments.
Spiritual Distress Assessment Tool
The SDAT is a concise, 5-item instrument designed to assess unmet spiritual needs in hospital patients ages 65 years and older that requires 20–30 minutes of participants’ time in a semi-structured interview format. In the initial SDAT development and validation study, researchers developed a spiritual needs model, which includes five needs: for life balance (meaning), for connection (transcendence), for values acknowledgment (value 1), to maintain control (value 2), and to maintain identity (psychosocial identity) (Monod et al., 2012). The original study focused on spiritual needs in individuals facing death and decline. Study participants were interviewed by a research assistant using two other validated SD measures: the FACIT-Sp, a 12-item scale with two subscales representing meaning and faith, and the single question assessment “Are you at peace?” which is scored using a visual analog scale ranging from 0 to 10. Results were then compared with SDAT interview findings to establish validity. Length is a crucial limitation of the SDAT. Patients experiencing severe dyspnea may not be able to participate in a semi-structured 20–30-minute interview.
Monod's original study used a patient-centered approach to assess SD, finding the SDAT valid in older patients hospitalized in post-acute rehab. Until recently, this was the only population in which the SDAT had been studied. In 2022, Kim and colleagues found the SDAT reliable for use in Korean cancer patients with varied diagnoses, education levels, and religious backgrounds, a promising start for more cultural and age-diverse validations of the tool (Kim et al., 2022). In Kim et al.'s study, two hundred and three geriatric patients in a rehabilitation unit underwent a 20–30-minute semi-structured interview administered by a trained chaplain. Questions explored five different spiritual needs and whether these needs were met. Answers were scored using a 4-point Likert scale ranging from 0 = ‘no evidence of unmet spiritual need’ to 3 = ‘evidence of severe unmet spiritual need’ (Monod et al., 2012). Inter-rater reliability was rated via videotaped patient interviews and assessed by intraclass correlation coefficients between SDAT scores at the time of the interview and again three months later. Internal consistency was found to be acceptable, with Cronbach's α = 0.60. Criterion validity was established by correlating SDAT scores with two measures, the FACIT-Sp and the single question measure “Are you at peace?” with both showing significant correlation. FACIT-Sp (Spearman's Rho = -0.45, p < .001) and the scoring of single question measure “Are you at peace?” indicated higher SD scores on the SDAT correlated with less peacefulness and lower spiritual well-being (Monod et al., 2012). Face validity was established with hospital chaplains without experience with the SDAT (Monod et al., 2010). Concurrent validity was established via a significant positive correlation between SDAT and GDS scores, indicating that higher SD was associated with more significant depressive symptoms (Monod et al., 2012).
Spiritual Distress Scale
The SDS is intended to detect SD in four domains: relationship with self, relationship with others, relationship with God, and attitude toward death (Ku et al., 2010). Created based on qualitative interviews of 20 terminally-ill cancer patients, the SDS is a 30-item self-report instrument with each item scored on a scale of 1–4, with higher scores indicating higher levels of SD. The SDS's original development and validation study were completed in 2010, focusing on SD in a cohort of hospitalized oncology patients in Taiwan, ages 17–84. The sample comprised diverse religious traditions in which Buddhism and Taoism were the majority. The study results demonstrated content validity ranging from 0.79 to 0.89. The internal consistency of Cronbach's α measurement for the total scale was 0.95 (Ku et al., 2010). Each item correlated with its domain, or subscale, at a significant level. A literature review found comparative well-being and spiritual need scales associated with three sub-scales. The second sub-scale of the SDS, relationship with others, was identified as an essential aspect of spirituality.
The SDS was also validated and used in a study of 332 Portuguese patients with cancer who were initiating chemotherapy in a 2021 study (Martins et al., 2019, 2021). This cohort was predominantly Catholic, and most participants were diagnosed within the previous six months. The most common diagnoses were breast, colon, and lung cancer, and nearly 80% had stage III or IV cancer. The use of the tool in patients with stage III or IV cancer provides some precedent for broadening use into the palliative population.
Although initially developed in a Taiwanese cultural context, the SDS has also been translated into European Portuguese, adapted, validated, and found to be reliable in detecting SD in cancer patients initiating chemotherapy (Martins et al., 2021). Reliability in the initial cohort showed a total Cronbach's α score of 0.95, and Cronbach's α in the Portuguese study cohort was 0.91 (Ku et al., 2010; Martins et al., 2021). Ku et al. also reported a total content validity index of 0.83 and conducted factor analysis, showing that the four domains explained 64.831% of the total variance. The SDS shows promise as a tool designed specifically to detect SD and has been validated in multiple cultural, linguistic, and religious contexts.
Functional Assessment of Chronic Illness Therapy-Spiritual Well-Being-12
The FACIT-Sp-12 is a 12-item scale measuring meaning, peace, and faith. It is widely used as a measure in cancer patients and was initially constructed with interdisciplinary participation, including chaplains, psychotherapists, and cancer patients (Canada et al., 2008). The tool for spiritual assessment requires less than five minutes using a 5-point Likert scale. It can be administered independently via paper or electronic or during an in-person interview (FACIT-Sp-12, 2021). The development and validation study (Canada et al., 2008) of the FACIT-Sp-3 factor included 240 female cancer survivors who had received treatment at MD Anderson. The instrument is not faith-specific and encompasses the religious diversity and non-religious spirituality increasingly present in the American population (Peterman et al., 2014). Psychometric testing revealed that the 3-factor model better represented the data related to patient-reported faith, peace, and meaning than the FACIT-Sp’s original 2-factor design, which combined meaning and peace. Results also showed associations between meaning and physical and mental health, peace and mental health, and faith negatively associated with mental health. Physical health was measured using the SF-12, and mental health using the BSI 18, both independently validated and reliable tools (Canada et al., 2008).
Limitations of the 3-factor validation included the largely homogeneous initial sample. This was addressed in a later study across cancer survivors from diverse racial and ethnic groups, and it found that groups differ in how they interpret the meaning of the study questions (Murphy et al., 2010). The results support the need for future studies into how racial and ethnic differences might affect the interpretation of the assessment results. The FACIT-Sp-12 is now available in 39 languages and has been translated and used in diverse languages and religious groups, including Arabic-speaking Muslim populations (Lazenby et al., 2013) and Persian-speaking Muslims (Jafari et al., 2013). The FACIT-Sp 3 Factor scale has also been translated, culturally adapted, and validated in Greek (Fradelos et al., 2016). In initial studies of the FACIT-Sp-12, criterion validity was determined by comparing scores on FACIT-Sp, SF-12, and BSI 18 measures. Convergent validity has been established through a comparison of the tool. While the tool has been validated for cancer patients, Hasegawa et al. used the Japanese version of the FACIT-Sp-12 with other validated measures in patients with dyspnea. Confirmatory factor analysis was used to compare the two and 3-factor models’ associations between solutions and quality of life domains. The 3-factor solution improved the model from Δχ2 = 72.36, df = 2, p < .001 for the 2-factor solution, to Δχ2 = 59.11, df = 1, p = .13 for the 3-factor solution. While widely used to assess the connection between meaning, peace, faith, and physical and mental well-being, only the peace measure has been shown to correlate with SD (Schultz et al., 2017). It has been widely found to be a reliable tool validated in many cultural contexts.
Discussion
This review identified three tools: the SDAT, the FACIT-Sp-12, and the SDS. Of the three, the FACIT-Sp-12 is most utilized in research, translated into over thirty languages, and used as a criterion validity measure for other spiritual measurement tools, including the SDAT. It is the briefest tool of the three, consisting of 12 questions that can be administered as a survey. However, FACIT-Sp-12 has the least specificity in identifying SD. In a study designed to differentiate between SD and other types of distress in cancer patients, Schultz et al. (2017) found that the peace subscale correlated with SD, finding patient self-report of SD to be more effective than using the FACIT-Sp (Schultz et al., 2017).
In contrast, the SDAT is specifically designed to measure patients’ SD, utilizing a relatively comprehensive spiritual needs model that identified five essential needs. The SDAT may be the longest of the spiritual assessment tools, requiring a 20–30-minute patient interview by a chaplain trained in using the tool. This length may burden patients with dyspnea who may have limited ability to participate in prolonged conversations. The tool has been validated in older patients in post-acute rehab and, more recently, in a study that included Korean cancer patients of various ages (Kim et al., 2022; Monod et al., 2010). It has not been validated or explicitly studied in palliative care patient groups. However, Kim et al.’s (2022) study of cancer patients creates a precedent for further research in groups with serious illnesses.
The SDS is also specifically developed to measure SD in hospitalized patients, with its initial validity studies in Taiwanese cancer patients (Ku et al., 2010). Additional analysis of the scale also demonstrated validity and reliability in patients with cancer in Portugal (Martins et al., 2019). The SDS is a self-report 30-item instrument scored on a 1–4 scale. As it does not require a 1:1 interview format, the tool may be adaptable to use as a self-report survey via paper or electronic device, allowing it to be utilized by patients who cannot speak at length. It has not been explicitly studied in palliative care patients; however, Martins et al.’s (2019) study included a majority of patients with stage III and IV cancers, a population who would broadly qualify for palliative care support.
Of the three tools, the SDS and the SDAT have the most significant specificity in identifying SD. In contrast, the FACIT-Sp-12 has been used in studies with a broader range of patient populations. When comparing the SDS and the SDAT, the SDS has less patient burden, a factor of particular importance in patients with a critical illness. The SDS has also been used in a broader patient population than the SDAT, with some applicability to palliative care patients. Finally, the possibility of adapting the SDS to alternative formats, such as paper or electronic self-report methods, makes it more attractive for a study to identify SD in patients with dyspnea.
Conclusion
To provide whole-person care, palliative care must incorporate quality spiritual care into each patient's treatment plan. SD assessment is necessary but, unfortunately, infrequent for patients suffering from dyspnea at the end of life. A review of suffering in serious illness, including identifying the sources of suffering and ameliorating interventions, is essential. If only physical suffering is addressed, then we risk neglecting the complex human whose needs, values, and relationships must be attended to at the end of life (Miles & Asbridge, 2017).
To aid with such spiritual assessment and interventions, it is critical to identify the most appropriate tool for identifying SD in patients experiencing dyspnea. This paper identified the SDS as the tool best suited for identifying SD in patients with dyspnea. While the SDS is validated for use in patients with cancer, specifically in advanced cancer across diverse cohorts, further research is necessary to assess whether the measure is valid and reliable for dyspnea patients. It would be worthwhile for future research to explore whether the 30 questions in the SDS might be shortened while maintaining internal validity and the ability to detect SD across the four domains. Finally, researching spiritual care interventions to address SD detected by the tools effectively will be an essential component of improving care plans for patients with dyspnea. As these advanced spiritual care functions fall within the domain of the board-certified chaplain with advanced certification in the provision of palliative care, these specialized chaplains must be included in the interdisciplinary palliative care team to address SD effectively. Developing a research tool validated in identifying SD in patients with dyspnea and ensuring the tool does not pose an undue burden in this vulnerable population could empower palliative care teams to improve patient care.
Footnotes
Acknowledgments
The author wishes to acknowledge Dr. Patricia L. Wright, Dr. Joan Carpenter, and Allison Cress for their assistance in editing earlier drafts of this article.
Declaration of Conflicting Interests
The author declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding
The author received no financial support for the research, authorship, and/or publication of this article.
