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September 2021 Article of the Month
 
by John Ehman, Editor, ACPE Research Article-of-the-Month
and Manager for Pastoral Care, Penn Presbyterian Medical Center, Philadelphia PA

Rantanen, P., Chochinov, H. M., Emanuel, L. L., Handzo, G., Wilkie, D. J., Yao, Y. and Fitchett, G. "Existential quality of life and associated factors in cancer patients receiving palliative care." Journal of Pain and Symptom Management (2021): online ahead of print, 7/29/21. 10pp.

[Editor's Note: Because this article is available ahead of print, no final page numbers can be cited. References are to manuscript [MS] page numbers.]

SUMMARY and COMMENT: This month's article by leading researchers in the field of Spirituality & Health should strike chaplains as conceptually intriguing, though methodologically somewhat complex. It is geared to those with a good knowledge of quantitative investigation, but it could still be quite readable for those with a basic familiarity with the research literature, inviting them into greater exploration of research possibilities. [Since September aligns with the beginning of the academic year, ACPE Educators may wish to defer discussion of this article and choose for new students another recent feature from the Article-of-the-Month index.] For students new to the Spirituality & Health literature, the article can still be valuable, especially for raising the ideas of existential quality of life and distress and the roles of preparation and completion in the lives of people facing circumstances of existential import.

Suggestions for Use of the Article for Student Discussion: 

While this article may be challenging for students not familiar with statistics (and even for some with relatively good grounding), it could also be a useful exercise for chaplains to see how technical articles can still be accessible by focusing on the Introduction and Discussion sections that convey the intent and upshot of the investigation. Such readers cannot apply a critical eye to the statistics themselves, but they can think critically about the ideas presented and, with some caution, depend upon the imprimatur of an established peer-reviewed journal to vouch for the integrity of the statistical analysis. After all, if students simply avoided articles with complex quantitative analysis, they would ignore a great deal of rich and useful sources of scientific insight. So, for chaplain students who might find the statistics here to be stumbling blocks, discussion could first be about how to tackle an article of this kind. Then the group could consider the key ideas of Preparation and Completion in terms of the specific items of the QUAL-E [--see Figure 1, MS p. 5]. Another key concept in the study's measures include Terminal Illness Awareness (TIA), the meaning of which should be easily understood. Are the chaplains sensitive to patients' TIA in pastoral encounters? The concept of Dignity, as it plays into the Patient Dignity Inventory (PDI) used in the study, may not be obvious, but it could be noted as an idea for further reading [--see Related Items of Interest, §V, below]. The various findings could then be named and discussed. Which of these stand out as most intriguing? What may be the risk of the subset of patients for whom existential distress is problematic being overlooked, when many patients have a relatively high quality of life near the end of life? How do the students tend to discern existential distress in their work, and does the idea of existential distress encourage them to broaden their perspective in any way beyond the language of religious or spiritual distress? More advanced students should be able to delve into discussion of the various differences between the current findings and those of previous studies. There could also be some consideration of the authors' points about the relationship between "statistical significance" and "clinical significance" [--see especially MS p. 7]. Finally, the group could be asked how they might apply the ideas of Preparation and Completion when listening to patients not only at the end of life but in any circumstances when patients might be contemplating their mortal finitude.

Related Items of Interest:

I.  For the sources of the definitions of "Exintential QoL" and "Exintential Distress," see:

Gagnon, P., Fillion, L., Robitaille, M. A., Girard, M., Tardif, F., Cochrane, J. P., Le Moignan Moreau, J. and Breitbart, W. "A cognitive-existential intervention to improve existential and global quality of life in cancer patients: a pilot study." Palliative and Supportive Care 13, no. 4 (August 2015): 981-990. [(Abstract:) OBJECTIVE: We developed a specific cognitive-existential intervention to improve existential distress in nonmetastatic cancer patients. The present study reports the feasibility of implementing and evaluating this intervention, which involved 12 weekly sessions in both individual and group formats, and explores the efficacy of the intervention on existential and global quality of life (QoL) measures. METHOD: Some 33 nonmetastatic cancer patients were randomized between the group intervention, the individual intervention, and the usual condition of care. Evaluation of the intervention on the existential and global QoL of patients was performed using the existential well-being subscale and the global scale of the McGill Quality of Life (MQoL) Questionnaire. RESULTS: All participants agreed that their participation in the program helped them deal with their illness and their personal life. Some 88.9% of participants agreed that this program should be proposed for all cancer patients, and 94.5% agreed that this intervention helped them to reflect on the meaning of their life. At post-intervention, both existential and psychological QoL improved in the group intervention versus usual care (p = 0.086 and 0.077, respectively). At the three-month follow-up, global and psychological QoL improved in the individual intervention versus usual care (p = 0.056 and 0.047, respectively). SIGNIFICANCE OF RESULTS: This pilot study confirms the relevance of the intervention and the feasibility of the recruitment and randomization processes. The data strongly suggest a potential efficacy of the intervention for existential and global quality of life, which will have to be confirmed in a larger study.]

Lo, C., Panday, T., Zeppieri, J., Rydall, A., Murphy-Kane, P., Zimmermann, C. and Rodin, G. "Preliminary psychometrics of the Existential Distress Scale in patients with advanced cancer." European Journal of Cancer Care 26, no. 6 (November 2017): e12597 [electronic journal article designation], 8pp. [(Abstract:) Existential distress is of clinical concern in patients with terminal illness. Although existential distress has been used to describe a broad spectrum of psychological disturbances, its narrower definition may be confined to distress that arises when the meaning and value of one's life is unclear, and is comorbid with feelings of loneliness and low self-worth. To promote further study, we developed and pilot-tested a 10-item Existential Distress Scale (EDS). Twenty-one patients with advanced cancer were recruited from a palliative care unit. Measures of existential distress, death anxiety, depression, performance status and physical symptom burden were collected. The EDS showed promising psychometric properties, including significant associations with death anxiety and depression. Thirty-eight per cent of the sample reported great or unbearable distress on at least one existential concern. The EDS may be administered to measure existential distress in patients with advanced cancer and clinicians may find the instrument useful to initiate a structured discussion about this symptom.]

II.  The terms religious, spiritual, and existential appear in the healthcare literature is sometimes erratic ways, sometimes apparently according to certain conventions of phrase more than as a function of precise definitional distinction, as may be suggested by a Medline search analysis of how these terms are paired with other concepts: see "Terminology pairings in Medline articles, 2005-2015." There is much published about existential experience, but chaplains may find useful the following 2019 literature review that looks at 21 key articles.

Tarbi, E. C. and Meghani, S. H. "A concept analysis of the existential experience of adults with advanced cancer." Nursing Outlook 67,no. 5 (September-October 2019): 540-557. [(Abstract:) BACKGROUND: Attention to the existential dimension of an individual's experience during serious illness is important. However, existential concerns continue to be poorly defined in literature, leading to neglect in the clinical realm. PURPOSE: This concept analysis seeks to clarify the concept of the existential experience within the context of adults with advanced cancer. METHODS: Rodgers' evolutionary method of concept analysis was used. DISCUSSION: Existential experience in adults with advanced cancer is a dynamic state, preceded by confronting mortality, defined by diverse reactions to shared existential challenges related to the parameters of existence (body, time, others, and death), resulting in a dialectical movement between existential suffering and existential health, with capacity for personal growth. Personal factors and the ability to cope appear to influence this experience. CONCLUSION: These findings can drive future research and enhance clinician ability to attend to the existential domain, thereby improving patient experience at end-of-life.]

III.  For the QUAL-E and its development, see:

Steinhauser, K. E., Christakis, N. A., Clipp, E. C., McNeilly, M., McIntyre, L. and Tulsky, J. A. "Factors considered important at the end of life by patients, family, physicians, and other care providers." JAMA 284, no. 19 (November 15, 2000): 2476-2482. [(Abstract:) CONTEXT: A clear understanding of what patients, families, and health care practitioners view as important at the end of life is integral to the success of improving care of dying patients. Empirical evidence defining such factors, however, is lacking. OBJECTIVE: To determine the factors considered important at the end of life by patients, their families, physicians, and other care providers. DESIGN AND SETTING: Cross-sectional, stratified random national survey conducted in March-August 1999. PARTICIPANTS: Seriously ill patients (n = 340), recently bereaved family (n = 332), physicians (n = 361), and other care providers (nurses, social workers, chaplains, and hospice volunteers; n = 429). MAIN OUTCOME MEASURES: Importance of 44 attributes of quality at the end of life (5-point scale) and rankings of 9 major attributes, compared in the 4 groups. RESULTS: Twenty-six items consistently were rated as being important (>70% responding that item is important) across all 4 groups, including pain and symptom management, preparation for death, achieving a sense of completion, decisions about treatment preferences, and being treated as a "whole person." Eight items received strong importance ratings from patients but less from physicians (P<.001), including being mentally aware, having funeral arrangements planned, not being a burden, helping others, and coming to peace with God. Ten items had broad variation within as well as among the 4 groups, including decisions about life-sustaining treatments, dying at home, and talking about the meaning of death. Participants ranked freedom from pain most important and dying at home least important among 9 major attributes. CONCLUSIONS: Although pain and symptom management, communication with one's physician, preparation for death, and the opportunity to achieve a sense of completion are important to most, other factors important to quality at the end of life differ by role and by individual. Efforts to evaluate and improve patients' and families' experiences at the end of life must account for diverse perceptions of quality.]

Steinhauser, K. E., Clipp, E. C., Bosworth, H. B., McNeilly, M., Christakis, N. A., Voils, C. I. and Tulsky, J. A. "Measuring quality of life at the end of life: validation of the QUAL-E." Palliative and Supportive Care 2, no. 1 (March 2004): 3-14. [(Abstract:) OBJECTIVES: To validate the QUAL-E, a new measure of quality of life at the end of life. METHODS: We conducted a cross-sectional study to assess the instrument's psychometric properties, including the QUAL-E's associations with existing measures, evaluation of robustness across diverse sample groups, and stability over time. The study was conducted at the VA and Duke University Medical Centers, Durham, North Carolina, in 248 patients with stage IV cancer, congestive heart failure with ejection fraction < or = 20%, chronic obstructive pulmonary disease with FEV1 < or = 1.0 1, or dialysis-dependent end stage renal disease. The main outcome measures included QUAL-E and five comparison measures: FACIT quality of life measure, Missoula-VITAS Quality of Life Index, FACIT-SP spirituality measures, Participatory Decision Making Scale (MOS), and Duke EPESE social support scales. RESULTS: QUAL-E analyses confirmed a four-domain structure (25 items): life completion (alpha = 0.80), symptoms impact (alpha = 0.87), relationship with health care provider (alpha = 0.71), and preparation for end of life (alpha = 0.68). Convergent and discriminant validity were demonstrated with multiple comparison measures. Test-retest reliability assessment showed stable scores over a 1-week period. SIGNIFICANCE OF RESULTS: The QUAL-E, a brief measure of quality of life at the end of life, demonstrates acceptable validity and reliability, is easy to administer, performs consistently across diverse demographic and disease groups, and is acceptable to seriously ill patients. It is offered as a new instrument to assist in the evaluation of the quality and effectiveness of interventions targeting improved care at the end of life.]

Steinhauser, K. E., Clipp, E. C., McNeilly, M., Christakis, N. A., McIntyre, L. M. and Tulsky, J. A. "In search of a good death: observations of patients, families, and providers." Annals of Internal Medicine 132, no. 10 (May 16, 2000): 825-832. [(Abstract:) Despite a recent increase in the attention given to improving end-of-life care, our understanding of what constitutes a good death is surprisingly lacking. The purpose of this study was to gather descriptions of the components of a good death from patients, families, and providers through focus group discussions and in-depth interviews. Seventy-five participants-including physicians, nurses, social workers, chaplains, hospice volunteers, patients, and recently bereaved family members-were recruited from a university medical center, a Veterans Affairs medical center, and a community hospice. Participants identified six major components of a good death: pain and symptom management, clear decision making, preparation for death, completion, contributing to others, and affirmation of the whole person. The six themes are process-oriented attributes of a good death, and each has biomedical, psychological, social, and spiritual components. Physicians' discussions of a good death differed greatly from those of other groups. Physicians offered the most biomedical perspective, and patients, families, and other health care professionals defined a broad range of attributes integral to the quality of dying. Although there is no "right" way to die, these six themes may be used as a framework for understanding what participants tend to value at the end of life. Biomedical care is critical, but it is only a point of departure toward total end-of-life care. For patients and families, psychosocial and spiritual issues are as important as physiologic concerns.]

IV.  For more on the original study from which the baseline data for the present study was drawn, see:

Kittelson, S., Scarton, L., Barker, P., Hauser, J., O'Mahony, S., Rabow, M., Delgado Guay, M., Quest, T. E., Emanuel, L., Fitchett, G., Handzo, G., Yao, Y., Chochinov, H. M. and Wilkie, D. "Dignity Therapy led by nurses or chaplains for elderly cancer palliative care outpatients: protocol for a randomized controlled trial." JMIR Research Protocols 8, no. 4 (April 17, 2019): e12213 [electronic journal article designation]. [(Abstract:) BACKGROUND: Our goal is to improve psychosocial and spiritual care outcomes for elderly patients with cancer by optimizing an intervention focused on dignity conservation tasks such as settling relationships, sharing words of love, and preparing a legacy document. These tasks are central needs for elderly patients with cancer. Dignity therapy (DT) has clear feasibility but inconsistent efficacy. DT could be led by nurses or chaplains, the 2 disciplines within palliative care that may be most available to provide this intervention; however, it remains unclear how best it can work in real-life settings. OBJECTIVE: We propose a randomized clinical trial whose aims are to (1) compare groups receiving usual palliative care for elderly patients with cancer or usual palliative care with DT for effects on (a) patient outcomes (dignity impact, existential tasks, and cancer prognosis awareness); and (b) processes of delivering palliative spiritual care services (satisfaction and unmet spiritual needs); and (2) explore the influence of physical symptoms and spiritual distress on the outcome effects (dignity impact and existential tasks) of usual palliative care and nurse- or chaplain-led DT. We hypothesize that, controlling for pretest scores, each of the DT groups will have higher scores on the dignity impact and existential task measures than the usual care group; each of the DT groups will have better peaceful awareness and treatment preference more consistent with their cancer prognosis than the usual care group. We also hypothesize that physical symptoms and spiritual distress will significantly affect intervention effects. METHODS: We are conducting a 3-arm, pre- and posttest, randomized, controlled 4-step, stepped-wedge design to compare the effects of usual outpatient palliative care and usual outpatient palliative care along with either nurse- or chaplain-led DT on patient outcomes (dignity impact, existential tasks, and cancer prognosis awareness). We will include 560 elderly patients with cancer from 6 outpatient palliative care services across the United States. Using multilevel analysis with site, provider (nurse, chaplain), and time (step) included in the model, we will compare usual care and DT groups for effects on patient outcomes and spiritual care processes and determine the moderating effects of physical symptoms and spiritual distress. RESULTS: The funding was obtained in 2016, with participant enrollment starting in 2017. Results are expected in 2021. CONCLUSIONS: This rigorous trial of DT will constitute a landmark step in palliative care and spiritual health services research for elderly cancer patients.] [This article is available online from the journal at www.researchprotocols.org/2019/4/e12213 and from the National Library of Medicine at www.ncbi.nlm.nih.gov/pmc/articles/PMC6492061.]

V.  This month's research included use of the Patient Dignity Inventory. For more on that measure and on Dignity Therapy, in addition to the recent article by Kittleson, et al. (cited directly above in §IV), see our April 2015 Article-of-the-Month:

Fitchett, G., Emanuel, L., Handzo, G., Boyken, L. and Wilkie, D. J. "Care of the human spirit and the role of dignity therapy: a systematic review of dignity therapy research." BMC Palliative Care 14 (2015): 8 [electronic journal article designation]. [(Abstract:) BACKGROUND: Dignity Therapy (DT), an intervention for people facing serious illness, focuses on dignity conservation tasks such as settling relationships, sharing words of love, and preparing a legacy document for loved ones. Research on DT began more than a decade ago and has been conducted in 7 countries, but a systematic review of DT research has not been published. METHODS: Using a PubMed search with key terms of 'dignity therapy', 'dignity psychotherapy', 'Chochinov', and 'dignity care', we found 29 articles on DT and retained 25 after full-text review. RESULTS: Of these, 17 articles representing 12 quantitative studies establish that patients who receive DT report high satisfaction and benefits for themselves and their families, including increased sense of meaning and purpose. The effects of DT on physical or emotional symptoms, however, were inconsistent. CONCLUSIONS: Conclusions point to three areas for future research on DT, to determine: (1) whether the DT intervention exerts an impact at a spiritual level and/or as a life completion task; (2) how DT should be implemented in real world settings; and (3) if DT has an effect on the illness experience within the context of not only the patient, but also the family and community. Building on this body of DT research, investigators will need to continue to be sensitive as they involve participants in DT studies and innovations to facilitate the generation and delivery of legacy documents to participants near the end of life.]

IV.  In terms of facilitating Preparation and Completion in cases of end-of-life care, chaplains may be interested in the following studies, though they do not model bedside chaplaincy interventions.

Steinhauser, K. E., Alexander, S. C., Byock, I. R., George, L. K. and Tulsky, J. A. "Seriously ill patients' discussions of preparation and life completion: an intervention to assist with transition at the end of life." Palliative and Supportive Care 7, no. 4 (December 2009): 393-404. [(Abstract:) OBJECTIVE: Patients approaching the end of life not only face challenges to physical well-being but also threats to emotional and spiritual integrity. Yet, identifying appropriate, effective, and brief interventions to address those concerns has proven elusive. We developed an intervention based on life review and emotional disclosure literatures and conducted a pilot study to determine feasibility and acceptability. This article presents qualitative intervention responses. METHOD: We conducted a three-armed randomized control trial to evaluate the effects of preparation and life completion discussion on health outcomes in patients with advanced serious illness. Hospice-eligible subjects were randomly assigned to one of three groups: (1) intervention (life completion discussion intervention), (2) attention control (relaxation meditation), and control (no intervention). Subjects in the intervention arm met with a facilitator three times. Session 1 focused on life story, Session 2 on forgiveness, and Session 3, on heritage and legacy. RESULTS: Eighteen subjects participated in the pilot intervention interviews. Subjects from a range of socioeconomic backgrounds completed the intervention with equal facility. Results from Session 1 demonstrate narrative responses participants gave as they reconnected with previous life roles, values, and accomplishments. The second session illustrated reflections of choices one might have made differently and exploration of forgiveness offered and sought. Content from the first and second sessions laid the foundation for discussing Session 3's lessons learned and heritage and legacy. Responses are summarized to assist clinicians in anticipating life review content that may improve overall quality of life at the end of life. SIGNIFICANCE OF RESULTS: Discussions of life completion may improve important health outcomes for patients at the end of life. This intervention may provide a brief, standardized, and transportable means for improving the quality of life of patients with advanced serious illness.]

Steinhauser, K. E., Alexander, S. C., Byock, I. R., George, L. K., Olsen, M. K. and Tulsky, J. A. "Do preparation and life completion discussions improve functioning and quality of life in seriously ill patients? Pilot randomized control trial." Journal of Palliative Medicine 11, no. 9 (November 2008): 1234-1240. [(Abstract:) BACKGROUND: Significant palliative care intervention has focused on physical pain and symptom control; yet less empirical evidence supports efforts to address the psychosocial and spiritual dimensions of experience. OBJECTIVE: To evaluate the impact of an intervention (Outlook) that promotes discussions of end-of-life preparation and completion on health outcomes in dying persons, including pain and symptoms, physical function, emotional function (anxiety and depression), spiritual well-being, and quality of life at the end of life. DESIGN: A three-arm pilot randomized control trial. Subjects were recruited from inpatient and outpatient hospital, palliative care, and hospice settings. Intervention subjects met with a facilitator three times and discussed issues related to life review, forgiveness, and heritage and legacy. Attention control subjects met with a facilitator three times and listened to a nonguided relaxation CD. True control subjects received no intervention. MEASUREMENTS: Preoutcomes and postoutcomes included the Memorial Symptom Assessment Scale, QUAL-E, Rosow-Breslau ADL Scale, Profile of Mood States anxiety sub-scale, the CESD short version, and the Daily Spiritual Experience Scale. RESULTS: Eighty-two hospice eligible patients enrolled in the study; 38 were women, 35 were African American. Participants ' primary diagnoses included cancer (48), heart disease (5) lung disease (10), and other (19) Ages ranged from 28-96. Participants in the active discussion intervention showed improvements in functional status, anxiety, depression, and preparation for end of life. CONCLUSIONS: The Outlook intervention was acceptable to patients from a variety of educational and ethnic backgrounds and offers a brief, manualized, intervention for emotional and spiritual concerns.]

VII.  Another study, in print this month, has dawn from the same baseline data source.

Damen, A., Exline, J., Pargament, K., Yao, Y., Chochinov, H., Emanuel, L., Handzo, G., Wilkie, D. J. and Fitchett, G. "Prevalence, predictors and correlates of religious and spiritual struggles in palliative cancer patients." Journal of Pain and Symptom Management 62, no. 3 (September 2021): e139-e147. [(Abstract:) CONTEXT: Religion and spirituality (r/s) are important resources in coping with cancer. However, there are aspects of r/s, such as religious and spiritual struggles, found to be associated with poorer outcomes. A new measure has been adapted from the Religious and Spiritual Struggles Scale (RSS) to assess r/s struggles: the RSS-14. This concise measure allows for the assessment of multiple types of r/s struggles for people from different religious backgrounds or none. OBJECTIVES: The aim of the present study was to examine the prevalence, predictors and correlates of r/s struggles as measured by the RSS-14 and its subdomains in a cancer population receiving palliative care. METHODS: Data were collected from six outpatient palliative care services across the US. Inclusion criteria for patients were age 55 or older with a cancer diagnosis. In addition to demographic and r/s characteristics, study measures included the Edmonton Symptom Assessment Scale (ESAS), the Patient Dignity Inventory (PDI) and the Quality of Life at the End of Life (QUAL-E). RESULTS: The study included 331 participants. Some r/s struggle was reported by 66%, moderate to high struggle for at least one item was reported by 20% of the patients. In bivariate analyses, r/s struggle was associated with greater symptom burden, greater dignity-related problems and poorer quality of life; in multivariable analyses, dignity-related problems remained a predictor of total r/s struggle. CONCLUSION: R/S struggles may compromise well-being for cancer patients receiving palliative care. Clinicians should consider periodic screening for r/s struggles and referrals for spiritual care if indicated.]

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