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Toward a clinical model for patient spiritual journeys in supportive and palliative care: Testing a concept of human spirituality and associated recursive states

Published online by Cambridge University Press:  30 July 2020

Rebecca Johnson Open the ORCID record for Rebecca Johnson [Opens in a new window] ,
Joshua Hauser  and
Linda Emanuel
Rebecca Johnson*
Affiliation:
Department of Medical Social Sciences, Northwestern University Feinberg School of Medicine, Chicago, IL
Joshua Hauser
Affiliation:
Northwestern Feinberg School of Medicine, Jesse Brown (Chicago) VA Medical Center, Chicago, IL
Linda Emanuel
Affiliation:
Department of General Internal Medicine, Northwestern University Feinberg School of Medicine, Chicago, IL
*
Author for correspondence: Rebecca Johnson, Department of Medical Social Sciences, Northwestern University Feinberg School of Medicine, 633 N St Clair St, 19th Floor, Chicago, IL 60611, USA. E-mail: rebecca.johnson@northwestern.edu
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Abstract

Objective

In 2015, a Chaplaincy Research Consortium generated a model of human spirituality in the palliative care context to further chaplaincy research. This article investigates the clinical fit of (a) the model's fundamental premise of universal human spirituality and (b) its 4 proposed stage descriptors (Discovery, Dialogue, Struggle, and Arrival).

Method

First, we collected qualitative data from an interdisciplinary palliative care focus group. Participants (n = 5) shared responses to the statement “the human spirit has essential commonalities across [ … ] groups and [ … ] attributes.” Participants also shared vignettes of spiritual care, and 48 vignettes illustrating patients’ spiritual journeys were subsequently taken from the transcript of that group. Second, we invited different mixed discipline palliative care professionals (n = 9) to individually card sort these vignettes to the model's 4 stage descriptors; we conducted pattern analysis on the results. We then administered a third step, convening six physicians to complete the card sort again, this time allowing designation of cards to one or two of the 4 stage descriptors.

Results

Focus group participants were supportive of the model's all-encompassing definition of spirituality. The concept of “connectedness” was a shared focus for all participants, connectedness and spirituality appearing almost synonymous. Pattern analysis of assigned 48 vignettes to the 4 stages showed stronger consensus around Discovery and Arrival than Struggle and Dialogue. Results of the additional card sort suggested Struggle and Dialogue involve oscillation and are harder to think of as a steady state as distinct from processes associated with Discovery or Arrival.

Significance of results

“Connectedness” is a productive concept for modeling human spiritual experience near the end of life. As one healthcare professional said: “this connectedness piece is [ … ] what I always look for … ” Although further work is needed to understand struggle and dialogue elements in peoples’ spiritual journeys, discovery and arrival shared consensus among participants.

Keywords

CancerCluster analysisConceptual modelEnd of lifeSpirituality
Type
Original Article
Information
Palliative & Supportive Care , Volume 19 , Issue 1 , February 2021 , pp. 28 - 33
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Copyright
Copyright © The Author(s), 2020. Published by Cambridge University Press

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References

REFERENCES

Adler, JM (2010) Rising to the challenges of identifying and analyzing clients’ narratives. Pragmatic Case Studies in Psychotherapy 6(3), 189–202.CrossRefGoogle Scholar
Adler, JM (2012) Living into the story: Agency and coherence in a longitudinal study of narrative identity development and mental health over the course of psychotherapy. Journal of Personality and Social Psychology 102(2), 367.CrossRefGoogle Scholar
Ahluwalia, S, Johnson, RE, Reddy, N, et al. (2020) A dyadic model of adaptation to life-limiting illness. Journal of Palliative Medicine. In Press.CrossRefGoogle ScholarPubMed
Amoah, CF (2011) The central importance of spirituality in palliative care. International Journal of Palliative Nursing 17(7), 353–358.CrossRefGoogle ScholarPubMed
Aslakson, R, Kweku, J, Kinnison, M, et al. (2017) Operationalizing the measuring what matters spirituality quality metric in the population of hospitalized, critically ill patients and their family members. Journal of Pain and Symptom Management 53(3), 650–655.CrossRefGoogle ScholarPubMed
Barnard, M, Strasser, F, Gamondi, C, et al. (2017) Relationships between spirituality, meaning in life, psychological distress, wish for hastened death, and their influence on quality of life in palliative care patients. Journal of Pain and Symptom Management 54(4), 514–522.CrossRefGoogle Scholar
Bech, P (2004) Measuring the dimension of psychological general well-being by the WHO-5. Quality of Life Newsletter, pp. 15–16.Google Scholar
Best, M, Butow, P and Olver, I (2016) Palliative care specialists’ beliefs about spiritual care. Supportive Care in Cancer 24, 3295–3306.CrossRefGoogle ScholarPubMed
Bonsignore, M, Barkow, K, Jessen, F, et al. (2001) Validity of the five-item WHO Well-Being Index (WHO-5) in an elderly population. European Archives of Psychiatry and Clinical Neuroscience 251(Suppl 2), 27–31.Google Scholar
Boston, P, Bruce, A and Schreiber, R (2011) Existential suffering in the palliative care setting: An integrated literature review. Journal of Pain and Symptom Management 41(3), 604–618.CrossRefGoogle ScholarPubMed
Breitbart, W (2002) Spirituality and meaning in supportive care: Spirituality- and meaning-centered group psychotherapy interventions in advanced cancer. Supportive Care in Cancer 10(4), 272–280.CrossRefGoogle ScholarPubMed
Breitbart, W (2007) Who needs the concept of spirituality? Human beings seem to!. Palliative & Supportive Care 5(2),105–106.CrossRefGoogle ScholarPubMed
Breitbart, W, Rosenfeld, B, Gibson, C, et al. (2010) Meaning-centered group psychotherapy for patients with advanced cancer: A pilot randomized controlled trial. Psycho-Oncology 19(1), 21–28.CrossRefGoogle ScholarPubMed
Breitbart, W, Pessin, H, Rosenfeld, B, et al. (2018) Individual Meaning Centered Psychotherapy for the treatment of psychological and existential distress: A randomized controlled trial in patients with advanced cancer. Cancer 124(15), 3231–3239.CrossRefGoogle ScholarPubMed
Ching, SS, Martinson, IM and Wong, TK (2009) Reframing: psychological adjustment of Chinese women at the beginning of the breast cancer experience. Qualitative Health Research 19(3), 339–351.CrossRefGoogle ScholarPubMed
Cooper, RS (2011) Case study of a chaplain's spiritual care for a patient with advanced metastatic breast cancer. Journal of Health Care Chaplaincy 17(1–2), 19–37.CrossRefGoogle ScholarPubMed
Damen, A, Delaney, A and Fitchett, G (2018) Research priorities for healthcare chaplaincy: Views of U.S. chaplains. Journal of Health Care Chaplaincy 24(2), 57–66.CrossRefGoogle ScholarPubMed
Delgado-Guay, M (2018) Developing a healing environment for broken souls of patients with life-threatening illnesses and their caregivers. Journal of Pain and Symptom Management 55(4), 1231–1236.CrossRefGoogle ScholarPubMed
D'Souza, K and Astrow, A (2020) Patient spirituality as a component of supportive care: Assessment and intervention. Current Treatment Options in Oncology 21(2), 11.CrossRefGoogle ScholarPubMed
Elo, S and Kyngas, H (2008) The qualitative content analysis process. Journal of Advanced Nursing 62(1), 107–115.CrossRefGoogle ScholarPubMed
Emanuel, L, Handzo, G, Grant, G, et al. (2015a) Workings of the human spirit in palliative care situations: A consensus model from the Chaplaincy Research Consortium. BMC Palliative Care 14(1), 29.CrossRefGoogle Scholar
Emanuel, L, Powell, R, Handzo, G, et al. (2015b). Validated assessment tools for psychological, spiritual and family issues. In Cherney, N, Fallon, M, Stein, K, Portenoy, R and Currow, D (eds), Oxford Textbook of Palliative Medicine. New York, NY: Oxford University Press, pp. 398–406.Google Scholar
Emery, E (2013) Who am I with Parkinson's disease? A psychologist response to chaplain intervention in the context of identity theory. Journal of Health Care Chaplaincy 19(3), 120–129.CrossRefGoogle ScholarPubMed
Fitchett, G, Pierson, A, Hoffmeyer, C, et al. (2020) Development of the PC-7, a quantifiable assessment of spiritual concerns of patients receiving palliative care near the end of life. Journal of Palliative Medicine 23(2), 248–253.CrossRefGoogle ScholarPubMed
Flannelly, K, Flannelly, L and Jankowski, K (2018) Threats to the internal validity of experimental and quasi-experimental research in healthcare. Journal of Health Care Chaplaincy 24(3), 107–130.CrossRefGoogle Scholar
Hall, S, Goddard, C, Opio, D, et al. (2012) Feasibility, acceptability and potential effectiveness of dignity therapy for older people in care homes: A phase II randomized controlled trial of a brief palliative care psychotherapy. Journal of Palliative Medicine 26(5), 703–712.CrossRefGoogle ScholarPubMed
Hall, S, Goddard, C, Martin, P, et al. (2013) Exploring the impact of dignity therapy on distressed patients with advanced cancer: Three case studies. Psychooncology 22(8), 1748–1752.CrossRefGoogle ScholarPubMed
Johnson, R, Wirpsa, MJ, Boyken, L, et al. (2016) Communicating chaplains’ care: Narrative documentation in a neuroscience-spine intensive care unit. Journal of Health Care Chaplaincy 22(4), 133–150.CrossRefGoogle Scholar
Kenne Sarenmalm, E, Thoren-Jonsson, AL, Gaston-Johansson, F, et al. (2009) Making sense of living under the shadow of death: Adjusting to a recurrent breast cancer illness. Qualitative Health Research 19(8), 1116–1130.CrossRefGoogle ScholarPubMed
Klemens, R (2004) Freedom from Essentialism: Introduction to Existential Psychotherapy. North Zeeb Road: Proquest Information and Learning Company.Google Scholar
Knight, S and Emanuel, L (2007) Processes of adjustment to end-of-life losses: A reintegration model. Journal of Palliative Medicine 10(5), 1190–1198.CrossRefGoogle ScholarPubMed
Ledbetter, TJ (2001) A pastoral perspective on pain management. Journal of Pastoral Care 55(4), 379–387.CrossRefGoogle ScholarPubMed
LeMay, K and Wilson, KG (2008) Treatment of existential distress in life threatening illness: A review of manualized interventions. Clinical Psychology Review 28(3), 472–493.CrossRefGoogle ScholarPubMed
Lopez-Sierra, H and Rodriguez-Sanchez, J (2015) The supportive roles of religion and spirituality in end-of-life and palliative care of patients with cancer in a culturally diverse context: A literature review. Current Opinion in Supportive and Palliative Care 9(1), 87–95.CrossRefGoogle Scholar
Low, J, Serfaty, M, Davis, S, et al. (2016) Acceptance and commitment therapy for adults with advanced cancer (CanACT): Study protocol for a feasibility randomised controlled trial. Trials 17, 77.CrossRefGoogle ScholarPubMed
Marchand, WR (2012) Mindfulness-based stress reduction, mindfulness-based cognitive therapy, and Zen meditation for depression, anxiety, pain, and psychological distress. Journal Psychiatric Practice 18(4), 233–252.CrossRefGoogle ScholarPubMed
Murillo, M and Holland, J (2004) Clinical practice guidelines for the management of psychosocial distress at the end of life. Palliative & Supportive Care 2(01), 65–77.CrossRefGoogle ScholarPubMed
O'Reilly, M, Larkin, P, Conroy, M, et al. (2016) The impact of a novel tool for comprehensive assessment of palliative care (MPCAT) on assessment outocmes at 6 and 12 month follow up. Journal of Pain Symptom Management 52(1), 107–116.CrossRefGoogle ScholarPubMed
Pargament, KI (2011) Spiritually Integrated Psychotherapy: Understanding and Addressing the Sacred. New York, NY: Guilford Press.Google Scholar
Prizer, L, Kluger, B, Sillau, S, et al. (2020) Correlates of spiritual wellbeing in persons living with Parkinson disease. Annals of Palliative Medicine, 9(Suppl. 1), S16–S23.CrossRefGoogle ScholarPubMed
Puchalski, C, Ferrell, B, Virani, R, et al. (2009) Improving the quality of spiritual care as a dimension of palliative care: The report of the consensus conference. Journal of Palliative Medicine 12(10), 885–904.CrossRefGoogle Scholar
Rego, F, Pereira, C, Rego, G, et al. (2018) The psychological and spiritual dimensions of palliative care: A descriptive systematic review. Neuropsychiatry 8, 2.CrossRefGoogle Scholar
Rippentrop, EA, Altmaier, EM, Chen, JJ, et al. (2005) The relationship between religion/spirituality and physical health, mental health, and pain in a chronic pain population. Pain 116(3), 311–321.CrossRefGoogle Scholar
Rodin, G, Lo, C, Rydall, A, et al. (2018) Managing cancer and living meaningfully (CALM): A randomized controlled trial of a psychological intervention for patients with advanced cancer. Journal of Clinical Oncology 36(23), 2422–2432.CrossRefGoogle ScholarPubMed
Shields, M, Kestenbaum, A and Dunn, LB (2015) Spiritual AIM and the work of the chaplain: A model for assessing spiritual needs and outcomes in relationship. Palliative & Supportive Care 13(1), 75–89.CrossRefGoogle Scholar
Snowden, A and Telfer, I (2017) Patient reported outcome measure of spiritual care as delivered by chaplains. Journal of Health Care Chaplaincy 23(4), 131–155.CrossRefGoogle Scholar
Steinhauser, KE, Alexander, SC, Byock, IR, et al. (2009) Seriously ill patients’ discussions of preparation and life completion: An intervention to assist with transition at the end of life. Palliative & Supportive Care 7(04), 393–404.CrossRefGoogle ScholarPubMed
Sulmasy, DP (2002) A biopsychosocial-spiritual model for the care of patients at the end of life. Gerontologist 42.CrossRefGoogle ScholarPubMed
Sumathy, R (2019) A prescription of poetry to help patients speak their minds. The Wall Street Journal. Available from: https://www.wsj.com/articles/a-prescription-of-poetry-to-help-patients-speak-their-minds-11575196200?Google Scholar
Vyjeyanthi, S, Periyakoil, A, Noda, M, et al. (2010) Assessment of factors influencing preservation of dignity at life's end: Creation and the cross-cultural validation of the preservation of dignity card-sort tool. Journal of Palliative Medicine 13(5), 495–500.Google Scholar
Williams, AL (2006) Perspectives on spirituality at the end of life: A meta-summary. Palliative & Supportive Care 4(4), 407–417.CrossRefGoogle ScholarPubMed
Young, W, Nadarajah, S, Skeath, P, et al. (2015) Spirituality in the context of life-threatening illness and life-transforming change. Palliative & Supportive Care 13(3), 653–660.CrossRefGoogle ScholarPubMed