Difficult dialogues about death: applying risk orders theory to analyse chaplains’ provision of end-of-life care

References

• Adams, J. (1995). Risk. Routledge.
   Google Scholar
• Afifi, T. (2009). Taboo topics, Encyclopedia of Human Relations http://go.galegroup.com.gate.lib.buffalo.edu/ps/i.do?p=GVRL&u=sunybuff_main&id=GALE|CX3207700550&v=2.1&it=r&sid=summon&userGroup=sunybuff_main&authCount=1
   Google Scholar
• Alvesson, M., & Skoldberg, K. (2009). Reflexive methodology: New vistas for qualitative research. Thousand Oaks, CA: Sage.
   Google Scholar
• Astrow, A. B., Wexler, A., Texeira, K., He, M. K., & Sulmasy, D. P. (2007). Is failure to meet spiritual needs associated with cancer patients’ perceptions of quality of care and their satisfaction with care? Journal of Clinical Oncology, 25(36), 5753–5757. https://doi.org/https://doi.org/10.1200/JCO.2007.12.4362
   PubMed Web of Science ®Google Scholar
• Balboni, T. A., Paulk, M. E., Balboni, M. J., Phelps, A. C., Loggers, E. T., Wright, A. A., Block, S. D., Lewis, E. F., Peteet, J. R., & Prigerson, H. G. (2010). Provision of spiritual care to patients with advanced cancer: Associations with medical care and quality of life near death. Journal of Clinical Oncology, 28(3), 445–452. https://doi.org/https://doi.org/10.1200/JCO.2009.24.8005
   PubMed Web of Science ®Google Scholar
• Baldwin, P. K. (2017). Death cafés: Death doulas and family communication. Behavioral Sciences, 7(4), 1–8. https://doi.org/https://doi.org/10.3390/bs7020026
   Google Scholar
• Beck, U. (1992). Risk society: Towards a new modernity. Sage.
   Google Scholar
• Becker, E. (1973). The denial of death. Simon & Schuster.
   Google Scholar
• Bennett, C. (2013). Death anxiety. In M. D. Gellman & J. R. Turner (Eds.), Encyclopedia of behavioral medicine (pp. 541–542). Springer.
   Google Scholar
• Bernacki, R. E., & Block, S. D. (2014). Communication about serious illness care goals: A review and synthesis of best practices. JAMA International Medicine, 174(12), 1994–2003. https://doi.org/https://doi.org/10.1001/jamainternmed.2014.5271
   PubMed Web of Science ®Google Scholar
• Byock, I. R. (2001). End-of-life care: A public health crisis and an opportunity for managed care. American Journal of Managed Care, 7(12), 1123–1132.
   PubMed Web of Science ®Google Scholar
• Carmack, H. J., & DeGroot, J. M. (2016). Development and validation of the communication apprehension about death scale. OMEGA—Journal of Death and Dying, 74(2), 239–259. https://doi.org/https://doi.org/10.1177/0030222815598440
   Web of Science ®Google Scholar
• Carmack, H. J., & DeGroot, J. M. (2020). Communication apprehension about death, religious group affiliation, and religiosity: Predictors of organ and body donation decisions. OMEGA – Journal of Death and Dying, 81(4), 627–647. https://doi.org/https://doi.org/10.1177/0030222818793294
   PubMed Web of Science ®Google Scholar
• Casarett, D. J., & Quill, T. E. (2007). “I’m not ready for hospice”: Strategies for timely and effective hospice discussions. Annals of Internal Medicine, 146(6), 443–449. https://doi.org/https://doi.org/10.7326/0003-4819-146-6-200703200-00011
   PubMed Web of Science ®Google Scholar
• Cherlin, E., Fried, T., Prigerson, H. G., Schulman-Green, D., Johnson-Hurzeler, R., & Bradley, E. (2005). Communication between physicians and family caregivers about care at the end of life: When do discussions occur and what is said? Journal of Palliative Medicine, 8(6), 1176–1185. https://doi.org/https://doi.org/10.1089/jpm.2005.8.1176
   PubMed Web of Science ®Google Scholar
• Charmaz. (2006). Constructing grounded theory : A practical guide through qualitative analysis. Sage Publications.
   Google Scholar
• Cohen, J. (2018). How is chaplaincy marginalised-by our faith communities and by our institutions and can we change it? Religions, 9(1), 24. https://doi.org/https://doi.org/10.3390/rel9010024
   Web of Science ®Google Scholar
• Collett, L. J., & Lester, D. (1969). The fear of death and the fear of dying. Journal of Psychology, 72(2), 179–181. https://doi.org/https://doi.org/10.1080/00223980.1969.10543496
   PubMed Web of Science ®Google Scholar
• Collier, A. (2016). Practice development using video-reflexive ethnography: Promoting safe space(s) towards the end of life in hospital. International Practice Development Journal, 6(1), 1–16. https://doi.org/https://doi.org/10.19043/ipdj.61.003
   Google Scholar
• Collins, A., McLachlan, S., & Philip, J. (2018). How should we talk about palliative care, death and dying? A qualitative study exploring perspectives from caregivers of people with advanced cancer. Palliative Medicine, 32(4), 861–869. https://doi.org/https://doi.org/10.1177/0269216317746584
   PubMed Web of Science ®Google Scholar
• Corr, C. A., & Corr, D. M. (2012). Death and dying, life and living (7th ed.). Wadsworth.
   Google Scholar
• Cramer, E., Tenzek, K. E., & Allen, M. (2013). Translating spiritual care in the chaplain profession. Journal of Pastoral Care and Counseling, 67(1), 1–15. https://doi.org/https://doi.org/10.1177/154230501306700106
   PubMedGoogle Scholar
• Cramer, E. M., Tenzek, K. E., & Allen, M. (2015). Recognizing success in the chaplain profession: Connecting perceptions with practice. Journal of Health Care Chaplaincy, 21(4), 131–150. https://doi.org/https://doi.org/10.1080/08854726.2015.1071543
   PubMed Web of Science ®Google Scholar
• de Vries, R., Berlinger, N., & Cadge, W. (2008). Lost in translation: The chaplain’s role in health care. Hastings Center Report, 38(6), 23–27. https://doi.org/https://doi.org/10.1353/hcr.0.0081
   PubMed Web of Science ®Google Scholar
• Doughty, C. (2022). The order of the good death. Death positive movement. Orderofgooddeath.com.http://www.orderofthegooddeath.com/resources/death-positive-movement
   Google Scholar
• Douglas, M., & Wildavsky, A. (1982). Risk and culture: An essay on the selection of Technological and environmental dangers. University of California Press.
   Google Scholar
• Du Pre, A. (2017). Communicating about health: Current issues and perspectives (5th ed.). Oxford.
   Google Scholar
• Fitchett, G. (2021). Transforming chaplaincy: The George Fitchett reader. (S. Nolan & A. Damen, Eds.). Wipf and Stock Publishers.
   Google Scholar
• Flannelly, K. J., Emanuel, L. L., Handzo, G. F., Galek, K., Silton, N. R., & Carlson, M. (2012). A national study of chaplaincy services and end-of-life outcomes. BMC Palliative Care, 11(1), 10. https://doi.org/https://doi.org/10.1186/1472-684X-11-10
   PubMedGoogle Scholar
• Fong, J. (2017). The death café movement: Exploring the horizons of mortality. Palgrave Macmillan.
   Google Scholar
• Foster, E. (2017). Communicating through health challenges. In J. Yamasaki, P. Geist-Martin, & B. F. Sharf (Eds.), Storied health and illness. Communicating persona, cultural, & political complexities (pp. 221–249). Waveland Press Inc.
   Google Scholar
• Giddens, A. (1991). The consequences of modernity. Stanford University Press.
   Google Scholar
• Gustafson, D. H. (2007). A Good Death. Journal of Medical Internet Research, 9(1), e6. https://doi.org/https://doi.org/10.2196/jmir.9.1.e6
   PubMed Web of Science ®Google Scholar
• Habermas, J., et al. (2010). An awareness of what is missing: Faith and reason in a post-secular age (English ed.). Polity.
   Google Scholar
• Handzo, G. F., Atkinson, M., & Wintz, S. K. (2020). National consensus project’s clinical practice guidelines for quality palliative care, fourth edition: Why is this important to chaplains? Journal of Health Care Chaplaincy, 26(2), 58–71. https://doi.org/https://doi.org/10.1080/08854726.2019.1582212
   PubMed Web of Science ®Google Scholar
• Heiss, S. N. (2011). ‘Healthy’ discussions about risk: The corn refiners association’s strategic negotiation of authority in the debate over high fructose corn syrup. Public Understanding of Science, 22(2), 219–235. https://doi.org/https://doi.org/10.1177/0963662511402281
   PubMed Web of Science ®Google Scholar
• Heyman, B., Alaszewski, A., & Brown, P. (2012). Values and health risks: An editorial. Health, Risk & Society, 14(5), 399–408. https://doi.org/https://doi.org/10.1080/13698575.2012.700050
   Web of Science ®Google Scholar
• Hoelter, J. W. (1979). Multidimensional treatment of fear of death. Journal of Consulting and Clinical Psychology, 47(5), 996–999. https://doi.org/https://doi.org/10.1037/0022-006X.47.5.996
   PubMed Web of Science ®Google Scholar
• Johnson. (2006). Privilege, power, and difference. (2 edition). McGraw-Hill.
   Google Scholar
• The Joint Commission. (2018). Part 1: Body, mind, spirit. The Source^TM for Joint Commission Compliance Strategies, 16(1), 1–22.
   Google Scholar
• Kaldhusdal, T., & Bernhagen, M. (2011). Consider the conversation, a documentary on a taboo subject. Burning Hay Wagon Productions.
   Google Scholar
• Keeley & Generous. (2017). Final conversations: Overview and practical implications for patients, families, and healthcare workers. Behavioral Sciences, 7(2), 17. https://doi.org/https://doi.org/10.3390/bs7020017
   Google Scholar
• Keeley, M., & Koenig Kellas, J. (2005). Constructing life and death through final conversation narratives. In L. M. Harter, P. M. Japp, & C. S. Beck (Eds.), Narratives, health, and healing: Communication theory, research, and practice (pp. 365–390). Erlbaum.
   Google Scholar
• LeBaron, V. T., Smith, P. T., Quiñones, R., Nibecker, C., Sanders, J. J., Timms, R., … Balboni, M. J. (2015 [2016]). How community clergy provide spiritual care: Toward a conceptual framework for clergy end-of-life education. Journal of Pain and Symptom Management, 51(4), 673–681. https://doi.org/https://doi.org/10.1016/j.jpainsymman.2015.11.016
   PubMed Web of Science ®Google Scholar
• Lester, D. (1990). The Collett-Lester fear of death scale. Death Studies, 14(5), 451–468. https://doi.org/https://doi.org/10.1080/07481189008252385
   Web of Science ®Google Scholar
• Lindlof, T. R. & Taylor, B. C. (2002). Qualitative communication research methods (2nd ed). Thousand Oaks, CA: Sage Publications
   Google Scholar
• Lupton, D. (1999). Risk. London: Routledge.
   Google Scholar
• Lupu, D., Deneszczuk, C., Leystra, T., McKinnon, R., & Seng, V. (2013). Few US public health schools offer courses on palliative and end-of-life care policy. Journal of Palliative Medicine, 16(12), 1582–1587. https://doi.org/https://doi.org/10.1089/jpm.2013.0161
   PubMed Web of Science ®Google Scholar
• Meier, E. A., Gallegos, J. V., Thomas, L. P. M., Depp, C. A., Irwin, S. A., & Jeste, D. V. (2016). Defining a good death (successful dying): Literature review and a call for research and public dialogue. The American Journal of Geriatric Psychiatry, 24(4), 261–271. https://doi.org/https://doi.org/10.1016/j.jagp.2016.01.135
   PubMed Web of Science ®Google Scholar
• Morhaim, D. K., & Pollack, K. M. (2013). End-of-life care issues: A personal, economic, public policy, and public health crisis. American Journal of Public Health, 103(6), e8–e10. https://doi.org/https://doi.org/10.2105/AJPH.2013.301316
   PubMed Web of Science ®Google Scholar
• Navasky, M., & O’Conner, K. (2010). Facing death. [PBS Frontline]. Mead Street Films, LLC.
   Google Scholar
• Neimeyer, R. A. (Ed.). (1994a). Death anxiety handbook. Taylor & Francis.
   Google Scholar
• Neimeyer, R. A. (1994b). The threat index and related methods. In R. A. Neimeyer (Ed.), Death anxiety handbook (pp. 61–101). Taylor & Francis.
   Google Scholar
• Nyatanga, B. (2018). Is death still a taboo subject in palliative care? British Journal of Community Nursing, 23(11), 570. https://doi.org/https://doi.org/10.12968/bjcn.2018.23.11.570
   PubMedGoogle Scholar
• Nygren, K. G., Olofsson, A., & Ohman, S. (2020). A framework of intersectional risk theory in the age of ambivalence. Palgrave MacMillian.
   Google Scholar
• Pearce, M. J., Coan, A. D., Herndon, J. E., II, Koenig, H. G., & Abernethy, A. P. (2011). Unmet spiritual care needs impact emotional and spiritual well-being in advanced cancer patients. Supportive Care in Cancer, 20(10), 2269–2276. https://doi.org/https://doi.org/10.1007/s00520-011-1335-1
   PubMed Web of Science ®Google Scholar
• Piderman, K. M., Marek, D. V., Jenkins, S. M., Johnson, M. E., Buryska, J. F., & Mueller, P. S. (2008). Patients’ expectations of hospital chaplains. Mayo Clinic Proceedings, 83(1), 58–65. https://doi.org/https://doi.org/10.4065/83.1.58
   PubMed Web of Science ®Google Scholar
• Prince-Paul, M., & DiFranco, E. (2017). Upstreaming and normalizing advance care planning conversations-A public health approach. Behavioral Sciences, 7(2), 1–7. https://doi.org/https://doi.org/10.3390/bs7020018
   Web of Science ®Google Scholar
• Puchalski, C. M., Lunsford, B., Harris, M. H., & Miller, R. T. (2006). Interdisciplinary spiritual care for seriously ill and dying patients: A collaborative model. Cancer Journal (Sudbury, Mass.), 12(5), 398–416. https://doi.org/https://doi.org/10.1097/00130404-200609000-00009
   PubMed Web of Science ®Google Scholar
• Quill, T. E. (2000). Initiating end-of-life discussions with seriously ill patients: Addressing the elephant in the room. JAMA: Journal of the American Medical Association, 284(19), 2502–2507. https://doi.org/https://doi.org/10.1001/jama.284.19.2502
   PubMed Web of Science ®Google Scholar
• Rao, J. K., Alongi, J., Anderson, L. A., Jenkins, L., Stokes, G., & Kane, M. (2005). Development of public health priorities for end-of-life initiatives. American Journal of Preventive Medicine, 29(5), 453–460. https://doi.org/https://doi.org/10.1016/j.amepre.2005.08.014
   PubMed Web of Science ®Google Scholar
• Sallnow, L., Tishelman, C., Lindqvist, O., Richardson, H., & Cohen, J. (2016). Research in public health and end-of-life care – Building on the past and developing the new. Progress in Palliative Care, 24(1), 25–30. https://doi.org/https://doi.org/10.1080/09699260.2015.1101260
   Web of Science ®Google Scholar
• Samuel, L. R. (2013). Death, American style. The Rowman & Littlefield Publishing.
   Google Scholar
• Schluter, J., Seaton, P., & Chaboya, W. (2008). Critical incident technique: A user’s guide for nurse researchers. Journal of Advanced Nursing, 61(1), 107–114. doi:https://doi.org/10.1111/j.1365-2648.2007.04490.x
   PubMed Web of Science ®Google Scholar
• Standards of Practice for Professional Chaplains (2015). Association of professional chaplains http://www.professionalchaplains.org/Files/professional_standards/standards_of_practice/Standards_of_Practice_for_Professional_Chaplains_102215.pdf
   Google Scholar
• Striley, K. M., & Field-Springer, K. (2014). The bad mother police: Theorizing risk orders in the discourses of infant feeding practices. Health Communication, 29(6), 552–562. https://doi.org/https://doi.org/10.1080/10410236.2013.782225
   PubMed Web of Science ®Google Scholar
• Striley, K., & Field-Springer, K. (2016). When it’s good to be a bad nurse: Expanding risk orders theory to explore nurses’ experiences of moral, social and identity risks in obstetrics units. Health, Risk & Society, 18(1–2), 77–96. https://doi.org/https://doi.org/10.1080/13698575.2016.1169254
   Web of Science ®Google Scholar
• Sunwolf, S. (2008). Peer groups: Expanding our study of small group communication. Sage.
   Google Scholar
• Tenzek, K. E. (2012). The role of chaplains in end-of -life-care: A coordinated management of meaning approach to interaction. ProQuest Dissertations Publishing.
   Google Scholar
• Tenzek, K. E., & Cramer, E. (2011). Legitimizing spirituality: Chaplain perspectives on education, training, and roles. National Communication Association.
   Google Scholar
• Tenzek, K. E., & Depner, R. M. (2017). Still searching: A meta-synthesis of a good death from the family perspective. Special issue family communication at the end-of-life. Behavioral Sciences, 7(4), 25. https://doi.org/https://doi.org/10.3390/bs7020025
   Google Scholar
• Thorson, J. A., & Powell, F. C. (1992). A revised death anxiety scale. Death Studies, 16(6), 507–521. https://doi.org/https://doi.org/10.1080/07481189208252595
   Web of Science ®Google Scholar
• Timmons, F., & Pujol, N. (2018). The role of healthcare chaplains in resuscitation: A rapid literature review. Journal of Religious Health, 57(3), 1183–1195. https://doi.org/https://doi.org/10.1007/s10943-018-0604-4
   PubMed Web of Science ®Google Scholar
• Tomer, A., & Eliason, G. (2000). Attitudes about life and death: Toward a comprehensive model of death anxiety. In A. Tomer (Ed.), Death attitudes and the older adult: Theories, concepts, and applications (pp. 3–22). Brunner-Routledge.
   Google Scholar
• Van Scoy, L. J., Watson-Martin, E., Bohr, T. A., Levi, B. H., & Green, M. J. (2018). End-of-life conversation game increases confidence for having end-of-life conversations for chaplains-in-training. American Journal of Hospice & Palliative Medicine, 35(4), 592–600. https://doi.org/https://doi.org/10.1177/1049909117723619
   PubMed Web of Science ®Google Scholar
• VandeCreek, L., & Burton, L. (2001). Professional chaplaincy: Its role and importance in healthcare. Journal of Pastoral Care, 55(1), 81–97. https://doi.org/https://doi.org/10.1177/002234090105500109
   PubMedGoogle Scholar
• Vossel, H. (2021, November 18). Pandemic spurred advance care planning. Hospice News https://hospicenews.com/2021/11/18/pandemic-spurred/
   Google Scholar
• White, K., Murphy, P. E., Jeuland, J., & Fitchett, G. (2019). Distress and self-care among chaplains working in palliative care. Palliative & Supportive Care, 17(5), 542–549. https://doi.org/https://doi.org/10.1017/S1478951518001062
   PubMed Web of Science ®Google Scholar
• Williams, K. D. (2001). Ostracism: The power of silence. The Guilford Press.
   Google Scholar
• Williams, J. A., Meltzer, D., Arora, V., Chung, G., & Curlin, F. A. (2011). Attention to inpatients’ religious and spiritual concerns: Predictors and association with patient satisfaction. Journal of General Internal Medicine, 26(11), 1265–1271. https://doi.org/https://doi.org/10.1007/s11606-011-1781-y
   PubMed Web of Science ®Google Scholar
• Wittenberg-Lyles, E., Oliver, D., Demiris, G., Baldwin, P., & Regehr, K. (2008). Communication dynamics in hospice teams: Understanding the role of the chaplain in interdisciplinary team collaboration. Journal of Palliative Medicine, 11(10), 1330–1335. https://doi.org/https://doi.org/10.1089/jpm.2008.0165
   PubMed Web of Science ®Google Scholar
• Wong, P. T. P., Reker, G. T., & Gesser, G. (1994). Death attitude profile-revised: A multidimensional measure of attitudes toward death. In R. Neimeyer (Ed.), Death anxiety handbook: Research, instrumentation, and application (pp. 121–148). Taylor & Francis.
   Google Scholar
• World Health Organization. (2019) What is the WHO definition of health? https://www.who.int/about/who-we-are/frequently-asked-questions
   Google Scholar
• Zedníková, K., & Pechová, O. (2015). Communication about death in the family. Central European Journal of Nursing and Midwifery, 6(2), 253–259. https://doi.org/https://doi.org/10.15452/CEJNM.2015.06.0012
   Google Scholar