Nonphysical Suffering: An Under-Resourced and Key Role for Hospice and Palliative Care Social Workers

References

• Abell, J., & Myers, G. (2008). Analyzing research interviews. In R. Wodak & M. Krzyzanowski (Eds.), Qualitative discourse analysis in the social sciences (pp. 145–161). Palgrave MacMillan. doi:10.1007/978-1-137-04798-4_7
   Google Scholar
• Absolon, K. (2022). Colonialism: A commentary. In S. Shaikh, B. LeFrançois & T. Macías (Eds.), Critical Social Work Praxis (pp. 363–368). Fernwood Publishing.
   Google Scholar
• Albertín Carbó, P., Vàzquez Ahumada, M. A., Dorado Caballero, A., & Lezama Argüelles, G. A. (2016). “How do I do discourse analysis?” Teaching discourse analysis to novice researchers through a study of intimate partner gender violence among migrant women. Qualitative Social Work, 15(3), 363–379. doi:10.1177/1473325015617233
   Web of Science ®Google Scholar
• Algu, K. (2021). Denied the right to comfort: Racial inequities in palliative care provision. EClinical Medicine, 34(100833), 1–2. doi:10.1016/j.eclinm.2021.100833
   Google Scholar
• Allen, S., Chapman, Y., O'Connor, M., & Francis, K. (2008). Discourses associated with nursing aged people who are dying in the Australian context: A review of the literature. International Nursing Review, 55(3), 349–354. doi:10.1111/j.1466-7657.2008.00628
   PubMed Web of Science ®Google Scholar
• Arbore, P., Katz, R. S., & Johnson, T. A. (2016). Suffering and the caring professional. In R. S. Katz & T. A. Johnson (Eds.), When professionals weep: Emotional and countertrans- ference responses in end-of-life care (pp. 13–26). Taylor & Francis Group. doi:10.4324/9781315716022-3
   Google Scholar
• Back, A., Rushton, C., Kaszniak, A., & Halifax, J. (2015). “Why are we doing this?”: Clinician helplessness in the face of suffering. Journal of Palliative Medicine, 18(1), 26–30. doi:10.1089/jpm.2014.0115
   PubMed Web of Science ®Google Scholar
• Berkman, C., & Stein, G. L. (2018). Palliative and end-of-life care in the masters of social work curriculum. Palliative & Supportive Care, 16(2), 180–188. doi:10.1017/S147895151700013X
   PubMed Web of Science ®Google Scholar
• Berzoff, J., Dane, B., & Cait, C. (2005). Innovative models for developing post-masters curriculum in end-of-life care. Journal of Teaching in Social Work, 25(3-4), 63–88. doi:10.1300/J067v25n03_05
   Google Scholar
• Blacker, S., Head, B., Jones, B., Remke, S., & Supiano, K. (2016). Advancing hospice and palliative care social work leadership in interprofessional education and practice. Journal of Social Work in End-of-Life & Palliative Care, 12(4), 316–330. doi:10.1080/15524256.2016.1247771
   PubMed Web of Science ®Google Scholar
• Booker, R., & Bruce, A. (2020). Palliative sedation and medical assistance in dying: Distinctly different or simply semantics? Nursing Inquiry, 27(1), e12321. doi:10.1111/nin.12321
   PubMed Web of Science ®Google Scholar
• Borgstrom, E., & Walter, T. (2015). Choice and compassion at the end of life: A critical analysis of recent English policy discourse. Social Science & Medicine (1982), 136-137, 99–105. doi:10.1016/j.socscimed.2015.05.013
   PubMed Web of Science ®Google Scholar
• Bosma, H., Johnston, M., Cadell, S., Wainwright, W., Abernethy, N., Feron, A., … Nelson, F. (2010). Creating social work competencies for practice in hospice palliative care. Palliative Medicine, 24(1), 79–87. doi:10.1177/0269216309346596
   PubMed Web of Science ®Google Scholar
• Bosma, H., Johnston, M., Cadell, S., Wainwright, W., Abernathy, N., Feron, A., … Nelson, F. (2008). Canadian Social Work Competencies for Hospice Palliative Care: A Framework to Guide Education and Practice at the Generalist and Specialist Levels. http://cms.virtualhospice.ca/Web/CVH/Assets/Social_Work_Competencies_July_2009_20150708134353.pdf.
   Google Scholar
• Breaden, K., Hegarty, M., Swetenham, K., & Grbich, C. (2012). Negotiating uncertain terrain: A qualitative analysis of clinicians’ experience of refractory suffering. Journal of Palliative Medicine, 15(8), 896–901. doi:10.1089/jpm.2011.0442
   PubMed Web of Science ®Google Scholar
• Bruce, A., Schreiber, R., Petrovskaya, O., & Boston, P. (2011). Longing for ground in a ground(less) world: A qualitative inquiry of existential suffering. BMC Nursing, 10(1), 2. doi:10.1186/1472-6955-10-2
   PubMedGoogle Scholar
• Cadell, S., & Bosma, H. (2022). Palliative social work in Canada. In T. Altilio, S. Otis-Green & J. Cagle (Eds.), Oxford textbook of palliative social work (pp. 482–484). Oxford University Press. doi:10.1093/med/9780197537855.003.0047
   Google Scholar
• Cadell, S., Johnston, M., Bosma, H., & Wainright, W. (2010). An overview of contemporary social work practice in palliative care. Progress in Palliative Care, 18(4), 205–211. doi:10.1179/096992610X12775428636700
   Google Scholar
• Cadell, S., Hemsworth, D., Smit Quosai, T., Steele, R., Davies, E., Liben, S., … Siden, H. (2014). Posttraumatic growth in parents caring for a child with a life-limiting illness: A structural equation model. The American Journal of Orthopsychiatry, 84(2), 123–133. doi:10.1037/h0099384
   PubMed Web of Science ®Google Scholar
• Cait, C., Lafrenière, G., Coakley, L., & Godin, M. (2019). Re-imagining hospice volunteering and thinking about community engagement. Vancouver, BC: Congress of the Humanities and Social Services, CASWE.
   Google Scholar
• Campbell, L., & Amin, N. (2012). A poststructural glimpse at the World Health Organization’s palliative care discourse in rural South Africa. Rural and Remote Health, 12, 2059. doi:10.22605/RRH2059
   PubMed Web of Science ®Google Scholar
• Canadian Institute for Health Information. (2023). Access to palliative care in Canada 2023. https://www.cihi.ca/sites/default/files/document/access-to-palliative-care-in-canada-2023-report-en.pdf.
   Google Scholar
• Canadian Society of Palliative Care Physicians. (2016). How to improve Palliative Care in Canada. https://archive.cspcp.ca/wp-content/uploads/2016/11/Full-Report-How-to-Improve-Palliative-Care-in-Canada-FINAL-Nov-2016.pdf.
   Google Scholar
• Cheek, J. (2000). Postmodern and poststructural approaches to nursing research. SAGE. doi:10.4135/9781452204895
   Google Scholar
• Cheek, J. (2004). At the margins? Discourse analysis and qualitative research. Qualitative Health Research, 14(8), 1140–1150. doi:10.1177/1049732304266820
   PubMed Web of Science ®Google Scholar
• Clark, D. (1999). ‘Total pain,’ disciplinary power and the body in the work of Cicely Saunders, 1958-1967. Social Science & Medicine, 49(6), 727–736. doi:10.1016/S0277-9536(99)00098-2
   PubMed Web of Science ®Google Scholar
• Clark, D. (2016). To comfort always: A history of palliative medicine since the nineteenth century. Oxford University Press. doi:10.1093/med/9780199674282.001.0001
   Google Scholar
• Clark, E. J. (2011). Self care as best practice in palliative care. In T. Altilio & S. Otis-Green (Eds.), Oxford Textbook of Palliative Social Work (pp. 771–777). Oxford University Press. doi:10.1093/med/9780199739110.003.0083
   Google Scholar
• Currow, D., & Hegarty, M. (2006). Suffering—At the bedside of the dying. Journal of Religion, Spirituality & Aging, 18(2-3), 123–136. doi:10.1300/J496v18n02_10
   Google Scholar
• Dahlborg-Lyckhage, E., & Liden, E. (2010). Competing discourses in palliative care. Supportive Care in Cancer, 18(5), 573–582. doi:10.1007/s00520-009-0691-6
   PubMed Web of Science ®Google Scholar
• Delgado-Guay, M., Ferrer, J., Rieber, A., Rhondali, W., Tayjasanant, S., Ochoa, … Bruera, E. (2015). Financial distress and its associations with physical and emotional symptoms and quality of life among advanced cancer patients. Oncologist, 20(9), 1092–1098.
   PubMed Web of Science ®Google Scholar
• Gardner, D., Gerbino, S., Warner Walls, J., Chachkes, E., & Doherty, M. (2015). Mentoring the next generation of social workers in palliative and end-of-life care: The Zelda Foster studies program. Journal of Social Work in End-of-Life & Palliative Care, 11(2), 107–131. doi:10.1080/15524256.2015.1074142
   PubMed Web of Science ®Google Scholar
• Grassau, P., Stinchcombe, A., Thomas, R., & Wright, D. K. (2021). Centering sexual and gender diversity within Compassionate Communities: Insights from a community network of LGBTQ2S + older adults. Palliative Care and Social Practice, 15, 26323524211042630. doi:10.1177/26323524211042630
   Google Scholar
• Gregory, D., & English, J. (1994). The myth of control: Suffering in palliative care. Journal of Palliative Care, 10(2), 18–22. doi:10.1177/082585979401000204
   PubMedGoogle Scholar
• Gwyther, L., Altilio, T., Blacker, S., Christ, G., Csikai, E., Hooyman, N., … Howe, J. (2005). Social work competencies in palliative and end-of-life care. Journal of Social Work in End-of-Life & Palliative Care, 1(1), 87–120. doi:10.1300/J457v01n01_06
   PubMedGoogle Scholar
• Hall, S. (2001). Foucault: Power, knowledge and discourse. In M. Whetherell, S. Taylor, & S. Yates (Eds.), Discourse theory and practice: A reader (pp. 72–81). SAGE.
   Google Scholar
• Health Canada. (2018). Framework on Palliative Care in Canada. https://www.canada.ca/content/dam/hc-sc/documents/services/health-care-system/reports-publications/palliative- care/framework-palliative-care-canada/framework-palliative-care-canada.pdf
   Google Scholar
• Healy, K. (2005). Social work theories in context: Creating frameworks for practice. Palgrave.
   Google Scholar
• Hegarty, M., Breaden, K., Swetenham, C., & Grbich, C. (2010). Learning to work with the “unsolvable”: Building capacity for working with refractory suffering. Journal of Palliative Care, 26(4), 287–294. doi:10.1177/082585971002600405
   PubMed Web of Science ®Google Scholar
• Henderson, D., Boyle, A., Herx, L., Alexiadis, A., Barwich, D., Connidis, S., … Sinnarajah, A. (2019). Staffing a specialist palliative care service, a team-based approach: Expert consensus white paper. Journal of Palliative Medicine, 22(11), 1318–1323. doi:10.1089/jpm.2019.0314
   PubMed Web of Science ®Google Scholar
• John, L. (1994). Borrowed knowledge in social work: An introduction to post-structuralism and post-modernity. In A. Chambon & A. Irving (Eds.), Postmodernism and social work (pp. 47–60). Canadian Scholars’ Press.
   Google Scholar
• Jorgensen, M., & Phillips, L. (2002). Discourse analysis as theory and method. SAGE. doi:10.4135/9781849208871
   Google Scholar
• Karsoho, H., Fishman, J., Wright, D., & Macdonald, M. (2016). Suffering and medicalization at the end of life: The case of physician-assisted dying. Social Science & Medicine, 170, 188–196. doi:10.1016/j.socscimed.2016.10.010
   PubMed Web of Science ®Google Scholar
• Kortes-Miller, K., Boulé, J., Wilson, K., & Stinchcombe, A. (2018). Dying in long-term care: Perspectives from sexual and gender minority older adults about their fears and hopes for end of life. Journal of Social Work in End-of-Life & Palliative Care, 14(2-3), 209–224. doi:10.1080/15524256.2018.1487364
   PubMed Web of Science ®Google Scholar
• Lavallee, B., & Harding, L. (2022). How Indigenous-specific racism is coached into health systems. In A. Gebhard, S. Mclean & V. St. Denis (Eds.), White benevolence: Racism and colonial violence in the helping professions (pp. 51–68). Fernwood Publishing.
   Google Scholar
• Livholts, M., & Tamboukou, M. (2015). Discourse and narrative methods. SAGE.
   Google Scholar
• Lupton, D. (1992). Discourse analysis: A new methodology for understanding the ideologies of health and illness. Australian Journal of Public Health, 16(2), 145–150. doi:10.1111/j.1753-6405.1992.tb00043.x
   PubMedGoogle Scholar
• Nagington, M., Walshe, C., & Luker, K. (2016a). Quality care as ethical care: A poststructural analysis of palliative and supportive district nursing care., Nursing Inquiry23(1), 12–23. doi:10.1111/nin.12109
   PubMed Web of Science ®Google Scholar
• Nagington, M., Walshe, C., & Luker, K. (2016b). A poststructural rethinking of the ethics of technology in relation to the provision of palliative home care by district nurses. Nursing Philosophy : An International Journal for Healthcare Professionals, 17(1), 59–70. doi:10.1111/nup.12099
   PubMed Web of Science ®Google Scholar
• Native Women’s Association of Canada (n.d). Sex and gender inclusive terminology. https://nwac.ca/assets-knowledge-centre/NWAC-2SLGBTQ-Factsheet-EN.pdf.
   Google Scholar
• O'Connor, M., & Payne, S. (2006). Discourse analysis: Examining the potential for research in palliative care. Palliative Medicine, 20(8), 829–834. doi:10.1177/0269216306072348
   PubMed Web of Science ®Google Scholar
• O’Connor, M., Mellar, D., & Abernethey, A. (2010). Language, discourse and meaning in palliative medicine. Progress in Palliative Care, 18(2), 66–71. doi:10.1179/096992610X12624290276421
   Google Scholar
• Park, Y., & Bhuyan, R. (2012). Whom should we serve? A discourse analysis of social workers’ commentary on undocumented immigrants. Journal of Progressive Human Services, 23(1), 18–40. doi:10.1080/10428232.2011.605745
   Google Scholar
• Pesut, B., Thorne, S., Huisken, A., Wright, D. K., Chambaere, K., Tishelman, C., & Ghosh, S. (2022). Is progress being made on Canada’s palliative care framework and action plan? A survey of stakeholder perspectives. BMC Palliative Care, 21(1), 182. doi:10.1186/s12904-022-01074-4
   PubMed Web of Science ®Google Scholar
• Prince, H., Kortes-Miller, K., Stajduhar, K., & Marshall, D. (2022). Public health palliative care, equity-oriented care, and structural vulnerability. In J. Abel & A. Kellehear (Eds.), Oxford textbook of public health palliative care (pp. 197–208). Oxford University Press. doi:10.1093/med/9780198862994.003.0021
   Google Scholar
• Prince, H., Nadin, S., Crow, M., Maki, L., Monture, L., Smith, J., & Kelley, M. L. (2019). “If you understand you cope better with it”: The role of education in building palliative care capacity in four First Nations communities in Canada. BMC Public Health, 19(1), 768. doi:10.1186/s12889-019-6983-y
   PubMedGoogle Scholar
• Rattner, M. (2019). Tellable and untellable stories in suffering and palliative care. Mortality, 24(3), 357–368. doi:10.1080/13576275.2018.1530206
   Google Scholar
• Rattner, M. (2020). Navigating the intangible: Working with non-physical suffering on the front-lines of palliative care. OMEGA - Journal of Death and Dying, 81(4), 670–684. doi:10.1177/0030222818797171
   PubMed Web of Science ®Google Scholar
• Rattner, M. (2022). Increasing our understanding of non-physical suffering within palliative care: A scoping review. Palliative and Supportive Care, 20(3), 417–432. doi:10.1017/S1478951521001127
   PubMed Web of Science ®Google Scholar
• Rattner, M, (2023). Disrupting and expanding the discourse: Palliative care clinicians’ experiences with patients’ non-physical suffering. (Doctoral dissertation). Wilfrid Laurier University. https://scholars.wlu.ca/etd/2530
   Google Scholar
• Rattner, M., & Berzoff, J. (2016). Rethinking suffering: Allowing for suffering that is intrinsic at end of life. Journal of Social Work in End-of-Life & Palliative Care, 12(3), 240–258. doi:10.1080/15524256.2016.1200520
   PubMed Web of Science ®Google Scholar
• Reimer-Kirkham, S., Stajduhar, K., Pauly, B., Giesbrecht, M., Mollison, A., McNeil, R., & Wallace, B. (2016). Death is a social justice issue: Perspectives on equity-informed palliative care. ANS. Advances in Nursing Science, 39(4), 293–307. doi:10.1097/ANS.0000000000000146
   PubMed Web of Science ®Google Scholar
• Relyea, E., MacDonald, B., Cattaruzza, C., & Marshall, D. (2019). On the margins of death: A scoping review of palliative care and schizophrenia. Journal of Palliative Care, 34(1), 62–69. doi:10.1177/0825859718804108
   PubMed Web of Science ®Google Scholar
• Rushton, C. H., & Ballard, M. K. (2011). The other side of caring: Caregiver suffering. In Palliative Care for Infants, Children, and Adolescents: A Practical Handbook (pp. 309–342). The Johns Hopkins University Press.
   Google Scholar
• Sacks, J., & Volker, D. (2015). For their patients: A study of hospice nurses’ responses to patient suffering. Journal of Hospice & Palliative Nursing, 17(6), 490–498. doi:10.1097/NJH.0000000000000197
   Web of Science ®Google Scholar
• Shahid, S., Taylor, E. V., Cheetham, S., Woods, J. A., Aoun, S. M., & Thompson, S. C. (2018). Key features of palliative care service delivery to Indigenous peoples in Australia, New Zealand, Canada and the United States: A comprehensive review. BMC Palliative Care, 17(1), 72. doi:10.1186/s12904-018-0325-1
   PubMedGoogle Scholar
• Stein, G. L., Berkman, C., & Pollak, B. (2019). What are social work students being taught about palliative care? Palliative & Supportive Care, 17(5), 536–541. doi:10.1017/S1478951518001049
   PubMed Web of Science ®Google Scholar
• Talja, S. (1999). Analyzing qualitative interview data: The discourse analytic method. Library & Information Science Research, 21(4), 459–477. doi:10.1016/S0740-8188(99)00024-9
   Web of Science ®Google Scholar
• Tanuseputro, P., Budhwani, S., Bai, Y. Q., & Wodchis, W. P. (2017). Palliative care delivery across health sectors: A population-level observational study. Palliative Medicine, 31(3), 247–257. doi:10.1177/0269216316653524
   PubMed Web of Science ®Google Scholar
• Taylor, S. (2013). What is discourse analysis? Bloomsbury Academic. doi:10.5040/9781472545213
   Google Scholar
• Thompson, M., & Wainwright, W. (2016). Transitions in dying and bereavement: A psychosocial guide for hospice and palliative care. Victoria Hospice Society.
   Google Scholar
• Vachon, M., & Guité-Verret, A. (2020). From powerlessness to recognition the meaning of palliative care clinicians’ experience of suffering. International Journal of Qualitative Studies on Health and Well-Being, 15(1), 1852362. doi:10.1080/17482631.2020.1852362
   PubMed Web of Science ®Google Scholar
• White, K., Wilkes, L., Cooper, K., & Barbato, M. (2004). The impact of unrelieved patient suffering on palliative care nurses. International Journal of Palliative Nursing, 10(9), 438–444. doi:10.12968/ijpn.2004.10.9.16049
   PubMedGoogle Scholar
• WHO. (2022). Palliative care. https://www.who.int/health-topics/palliative-care
   Google Scholar