Hostname: page-component-745bb68f8f-v2bm5 Total loading time: 0 Render date: 2025-01-12T08:39:44.991Z Has data issue: false hasContentIssue false
  • English
  • Français

Increasing our understanding of nonphysical suffering within palliative care: A scoping review

Published online by Cambridge University Press:  24 August 2021

Maxxine Rattner Open the ORCID record for Maxxine Rattner [Opens in a new window]
Maxxine Rattner*
Affiliation:
Lyle S. Hallman Faculty of Social Work, Wilfrid Laurier University, Kitchener, ON, Canada
*
Author for correspondence: Maxxine Rattner, Lyle S. Hallman Faculty of Social Work, Wilfrid Laurier University, 120 Duke Street West, Kitchener, ON, Canada N2H 6P6. E-mail: [email protected]
Get access Rights & Permissions [Opens in a new window]

Abstract

Objective

Nonphysical suffering is emotional, psychological, existential, spiritual, and/or social in nature. While palliative care is a discipline dedicated to the prevention and relief of suffering — both physical and nonphysical — little is known about existing research specific to nonphysical suffering within the context of palliative care. This scoping review helps to fill this gap.

Method

Three hundred and twenty-eight unique records were identified through a systematic search of three databases (MEDLINE, CINAHL, and PsycINFO). The following keywords were used: (suffering) AND (palliative OR “end of life” OR “end-of-life” OR hospice OR dying OR terminal* ill*). Thirty studies published between 1998 and 2019 met the inclusion criteria.

Results

Losses, worries, and fears comprise patients’ primary sources of nonphysical suffering. Patients face numerous barriers in expressing their nonphysical suffering to healthcare providers. The idea that patients can choose how they perceive their circumstances, thereby minimizing their nonphysical suffering, is pervasive in the research. The nature of nonphysical suffering experienced by family caregivers and palliative care clinicians is revealed in the review. The unique and sensitive interplay between nonphysical suffering and both palliative sedation and requests for hastened death is also evident. Overall, seven themes can be identified: (i) patients’ experiences of nonphysical suffering; (ii) patient coping mechanisms; (iii) efforts to measure nonphysical suffering; (iv) palliative sedation; (v) requests for hastened death; (vi) family suffering; and (vii) clinician suffering.

Significance of results

This is the first scoping review to map palliative care's research specific to suffering that is social, emotional, spiritual, psychological, and/or existential in nature. Its findings expand our understanding of the nature of nonphysical suffering experienced by patients, families, and palliative care clinicians. The review's findings have significant implications for front-line practice and future research.

Keywords

ExistentialPalliative carePsychosocialScoping reviewSuffering
Type
Review Article
Information
Palliative & Supportive Care , Volume 20 , Issue 3 , June 2022 , pp. 417 - 432
Check for updates
Copyright
Copyright © The Author(s), 2021. Published by Cambridge University Press

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

REFERENCES

Arksey, H and O'Malley, L (2005) Scoping studies: Towards a methodological framework. International Journal of Social Research Methodology 8(1), 19–32.CrossRefGoogle Scholar
Baines, B and Norlander, L (2000) The relationship of pain and suffering in a hospice population. American Journal of Hospice & Palliative Care 17(2), 319–326.CrossRefGoogle Scholar
Beng, TS, Guan, NC, Seang, LK, et al. (2013) The experiences of suffering of palliative care informal caregivers in Malaysia: A thematic analysis. American Journal of Hospice & Palliative Medicine 30(5), 473–489.CrossRefGoogle ScholarPubMed
Beng, TS, Guan, NC, Seang, LK, et al. (2014) The experiences of suffering of palliative care patients in Malaysia: A thematic analysis. American Journal of Hospice & Palliative Medicine 31(1), 45–56.CrossRefGoogle ScholarPubMed
Beng, T, Ann, Y, Guan, N, et al. (2017) The suffering pictogram: Measuring suffering in palliative care. Journal of Palliative Medicine 20(8), 869–874.CrossRefGoogle ScholarPubMed
Beng, TS, Jie, HW, Yan, LH, et al. (2019) The effect of 20-minute mindful breathing on the perception of suffering and changes in bispectral index score in palliative care patients: A randomized controlled study. American Journal of Hospice & Palliative Medicine 36(6), 478–484.CrossRefGoogle ScholarPubMed
Blondeau, D, Roy, L, Dumont, S, et al. (2005) Physicians’ and pharmacists’ attitudes toward the use of sedation at the end of life: Influence of prognosis and type of suffering. Journal of Palliative Care 21(4), 238–245.CrossRefGoogle ScholarPubMed
Bozzaro, C and Schildmann, J (2018) “Suffering” in palliative sedation: A conceptual analysis and implications for decision making. Journal of Pain & Symptom Management 56(2), 288–294.CrossRefGoogle ScholarPubMed
Browning, B (2004) Fragments of love: Explorations in the ethnography of suffering and professional caregiving. In Berzoff, J & Silverman, P (eds.), Living with Dying: A Handbook for End-of-Life Healthcare Practitioners. New York: Columbia University Press, pp. 21–42.Google Scholar
Bruce, A and Boston, P (2011) Relieving existential suffering though palliative sedation: Discussion of an uneasy practice. Journal of Advanced Nursing 67(12), 2732–2740.CrossRefGoogle Scholar
Bruce, A, Schreiber, R, Petrovskaya, O, et al. (2011) Longing for ground in a ground(less) world: A qualitative inquiry of existential suffering. BMC Nursing 10(2), 1–9.CrossRefGoogle Scholar
Byock, I (1994) When suffering persists. Journal of Palliative Care 10(2), 8–13.CrossRefGoogle ScholarPubMed
Byock, I (2009) Suffering and wellness. Journal of Palliative Medicine 12(9), 785–787.CrossRefGoogle Scholar
Cassell, E (1982) The nature of suffering and the goals of medicine. The New England Journal of Medicine 306(11), 639–645.CrossRefGoogle Scholar
Cassell, E (2004) The Nature of Suffering and the Goals of Medicine, 2nd ed. New York: Oxford University Press.CrossRefGoogle Scholar
Chapman, CR and Gavrin, J (1993) Suffering and its relationship to pain. Journal of Palliative Care 9(2), 5–13.CrossRefGoogle Scholar
Cherny, N (2015) The problem of suffering and the principles of assessment in palliative medicine. In Cherny, N, Fallon, M, Kaasa, S, Portenoy, R & Currow, D (eds.), Oxford Textbook of Palliative Medicine. 5th ed. New York: Oxford University Press, pp. 35–48.CrossRefGoogle Scholar
Cherny, N, Coyle, N and Foley, K (1994) The treatment of suffering when patients request elective death. Journal of Palliative Care 10(2), 71–79.CrossRefGoogle ScholarPubMed
Chio, C, Shih, F, Chiou, J, et al. (2008) The lived experiences of spiritual suffering and the healing process among Taiwanese patients with terminal cancer. Journal of Clinical Nursing 17, 735–743.CrossRefGoogle ScholarPubMed
Clark, D (2016) To Comfort Always: A History of Palliative Medicine Since the Nineteenth Century. Oxford: Oxford University Press.CrossRefGoogle Scholar
Daneault, S, Lussier, V, Mongeau, S, et al. (2004) The nature of suffering and its relief in the terminally ill: A qualitative study. Journal of Palliative Care 20(1), 7–11.CrossRefGoogle ScholarPubMed
Daneault, S, Lussier, V, Mongeau, S, et al. (2006) Primum non nocere: Could the health care system contribute to suffering? In-depth study from the perspective of terminally ill cancer patients. Canadian Family Physician 52(12), 1575.Google ScholarPubMed
Duggleby, W (2000) Enduring suffering: A grounded theory analysis of the pain experience of elderly hospice patients with cancer. Oncology Nursing Forum 27(5), 825–831.Google ScholarPubMed
Ellis, J, Cobb, M, O'Connor, T, et al. (2015) The meaning of suffering in patients with advanced progressive cancer. Chronic Illness 11(3), 198–209.CrossRefGoogle ScholarPubMed
Fishbain, D, Lewis, J and Gao, J (2015) The pain—suffering association, a review. Pain Medicine 16(6), 1057–1072.CrossRefGoogle ScholarPubMed
Karsoho, H, Fishman, J, Wright, D, et al. (2016) Suffering and medicalization at the end of life: The case of physician-assisted dying. Social Science & Medicine 170, 188–196.CrossRefGoogle ScholarPubMed
Klagsburn, S (1994) Patient, family, and staff suffering. Journal of Palliative Care 10(2), 14–17.CrossRefGoogle Scholar
Krikorian, A, Limonero, J and Mate, J (2012) Suffering and distress at the end of life. Psycho-Oncology 21(8), 799–808.CrossRefGoogle ScholarPubMed
Krikorian, A, Limonero, J, Roman, J, et al. (2014) Predictors of suffering in advanced cancer. The American Journal of Hospice & Palliative Care 31(5), 534–542.CrossRefGoogle ScholarPubMed
Kuuppelomaki, M and Lauri, S (1998) Cancer patients’ reported experiences of suffering. Cancer Nursing 21(5), 364–369.CrossRefGoogle ScholarPubMed
Levac, D, Colquhoun, H and O'Brien, K (2010) Scoping studies: Advancing the methodology. Implementation Science 5(69), 1–9.CrossRefGoogle ScholarPubMed
Montoya-Juarez, R, Pas Garcia-Caro, M, Campos-Calderon, C, et al. (2013a) Psychological responses of terminally ill patients who are experiencing suffering: A qualitative study. International Journal of Nursing Studies 50, 53–62.CrossRefGoogle Scholar
Montoya-Juarez, R, Garaa-Caro, M, Schmidt-Rio, V, et al. (2013b) Suffering indicators in terminally ill children from the parental perspective. European Journal of Oncology Nursing 17(6), 720–725.CrossRefGoogle Scholar
Morita, T (2004) Palliative sedation to relieve psycho-existential suffering of terminally ill cancer patients. Journal of Pain and Symptom Management 28(5), 445–450.CrossRefGoogle ScholarPubMed
Morrissey, MB (2011) Phenomenology of pain and suffering at the end-of-life: A humanistic perspective in gerontological health and social work. Journal of Social Work in End-of- Life & Palliative Care 7, 14–38.CrossRefGoogle ScholarPubMed
Mount, B (2003) Existential suffering and the determinants of healing. European Journal of Palliative Care 10(2), 40–42.Google Scholar
Nilmanat, K, Chailungka, P, Phungrassami, T, et al. (2010) Living with suffering as voiced by Thai patients with terminal advanced cancer. International Journal of Palliative Nursing 16(8), 393–399.CrossRefGoogle ScholarPubMed
Nilmanat, K, Promnoi, C, Phumgrassami, T, et al. (2015) Moving beyond suffering. Cancer Nursing 28(3), 224–231.CrossRefGoogle Scholar
Rodger, B and Cowles, K (1997) A conceptual foundation for human suffering in nursing care and research. Journal of Advanced Nursing 25, 1048–1053.CrossRefGoogle Scholar
Rodrigues, P, Crokaert, J and Gastmans, C (2018) Palliative sedation for existential suffering: A systematic review of argument-based ethics literature. Journal of Pain & Symptom Management 55(6), 1577–1590.CrossRefGoogle ScholarPubMed
Rousseau, P (2001) Guest editorial. Existential suffering and palliative sedation: A brief commentary with a proposal for clinical guidelines. American Journal of Hospice & Palliative Care 18(3), 151–153.CrossRefGoogle Scholar
Rousseau, P (2005) Guest editorial. Palliative sedation in the control of refractory symptoms. Journal of Palliative Medicine 8(1), 10–12.CrossRefGoogle Scholar
Rujs, C, Onwuteaka-Philipsen, B, van der Wal, G, et al. (2009) Unbearability of suffering at the end of life: The development of a new measuring device, the SOS-V. BMC Palliative Care 8, 1–10.Google Scholar
Rujs, C, Kerkhof, A, van der Wal, G, et al. (2012) The broad spectrum of unbearable suffering in end-of-life cancer studied in Dutch primary care. BMC Palliative Care 11(12), 1–10.Google Scholar
Rushton, C (2001) Caregiver suffering is a dimension of end-of-life care. The American Nurse 33(6), 9. 23.Google ScholarPubMed
Rydahl-Hansen, S (2005) Hospitalized patients experienced suffering in life with incurable cancer. Scandinavian Journal of Caring Sciences 19(3), 213–222.CrossRefGoogle ScholarPubMed
Sacks, J and Nelson, J (2007) A theory of nonphysical suffering and trust in hospice patients. Qualitative Health Research 17(5), 675–689.CrossRefGoogle ScholarPubMed
Sacks, J and Volker, D (2015) For their patients: A study of hospice nurses’ responses to patient suffering. Journal of Hospice & Palliative Nursing 17(6), 490–500.CrossRefGoogle Scholar
Saunders, C (1966) The care of the dying. Guy's Hospital Gazette 80, 136–142.Google Scholar
Saunders, C, Baines, M and Dunlop, R (1995) Living with Dying: A Guide to Palliative Care. Oxford: Oxford University Press.CrossRefGoogle Scholar
Schroepfer, T (2007) Critical events in the dying process: The potential for physical and psychosocial suffering. Journal of Palliative Medicine 10(1), 136–147.CrossRefGoogle ScholarPubMed
Smith, L, Amella, E, Edlund, B, et al. (2014) A dimensional analysis of the concept of suffering in people with dementia at end of life. Journal of Hospice & Palliative Nursing 16(5), 263–272.CrossRefGoogle Scholar
Strang, P, Strang, S, Hultborn, R, et al. (2004) Existential pain-an entity, a provocation, or a challenge? Journal of Pain and Symptom Management 27(3), 241–250.CrossRefGoogle ScholarPubMed
Sudore, RL, Villars, P and Carey, EC (2010) Sitting with you in your suffering: Lessons about intractable pain at the end of life. Journal of Palliative Medicine 13(6), 779–782.CrossRefGoogle Scholar
Tan, SB, Loh, EC, Lam, CL, et al. (2016) Psychological processes of suffering of palliative care patients in Malaysia: A thematic analysis. BMJ Supportive & Palliative Care, 1–6.Google ScholarPubMed
Tang, S, Chang, W, Chen, J, et al. (2016) Associations of prognostic awareness/acceptance with psychological distress, existential suffering, and quality of life in terminally ill cancer patients. Psycho-Oncology 25(4), 455–462.CrossRefGoogle Scholar
Terry, W and Olson, LG (2004) Unobvious wounds: The suffering of hospice patients. Internal Medicine Journal 34, 604–607.CrossRefGoogle ScholarPubMed
White, K, Wilkes, L, Cooper, K, et al. (2004) The impact of unrelieved patient suffering on palliative care nurses. International Journal of Palliative Care Nursing 10(9), 438–444.CrossRefGoogle ScholarPubMed
Williams, B (2004) Dying young, dying poor: A sociological examination of existential suffering among low socio-economic patients. Journal of Palliative Medicine 7(1), 27–37.CrossRefGoogle Scholar
Wilson, KG, Chochinov, HM, McPherson, CJ, et al. (2007) Suffering with advanced cancer. Journal of Clinical Oncology 25(13), 1691–1697.CrossRefGoogle ScholarPubMed
Witt Sherman, D (1998) Reciprocal suffering: The need to improve family caregivers’ quality of life through palliative care. Journal of Palliative Medicine 1(4), 357–366.CrossRefGoogle Scholar
World Health Organization (2021) Palliative care. Available at: http://www.who.int/cancer/palliative/definition/en/.Google Scholar