Care workers’ experiences discussing financial issues with families facing end-of-life decisions
Numerous studies have confirmed the presence of financial difficulties for families when a loved one is at the end of life. However, few studies examine the discussions family members have with care workers about financial issues during end of life. The research presented here examines the experiences that care workers have with family members expressing financial concerns and how care workers respond. I conducted in-depth interviews with fifty-eight care workers, defined in this study as clergy, patient advocates, and nurses who had experiences talking with families about financial issues. Transcripts of the interviews served as the data set. I transcribed, coded and analyzed the data. Families talk about financial issues openly, although sometimes guiltily. Some families express difficulties implicitly, and in these cases, care workers often had to piece together information based on other statements and behaviors of the family. Care workers suggest solutions at the interpersonal, organizational, inter-organizational, social, and national levels. Findings also support prior research that it is important for families to have end-of-life discussions before death is imminent so that families may plan accordingly, and offer insights about care workers and their role in making financial discussions easier for families.
Aoun SM, Kristjanson LJ, Currow DC, Hudson PL. Caregiving for the terminally ill: At what cost? Palliative Med 2005;19:551-5. DOI: https://doi.org/10.1191/0269216305pm1053oa
Bossuyt N, Van den Block L, Cohen J, et al. Is individual educational level related to end-of-life care use? Results from a nationwide retrospective cohort study in Belgium. J Palliat Med 2011;14:1135-41. DOI: https://doi.org/10.1089/jpm.2011.0045
Gott M, Allen R, Moeke-Maxwell T, et al. 'No matter what the cost:' A qualitative study of the financial costs faced by family and whanau caregivers within a palliative care context. Palliative Med 2015;29:518-28. DOI: https://doi.org/10.1177/0269216315569337
Kelley AS, McGarry K, Gorges R, Skinner JS. The burden of health care costs in the last 5 years of life. Ann Intern Med 2015;168:729-36. DOI: https://doi.org/10.7326/M15-0381
Gardiner C, Brereton L, Frey R, et al. Exploring the financial impact of caring for family members receiving palliative and end-of-life care: A systematic review of the literature. Palliative Med 2014;28:375-90. DOI: https://doi.org/10.1177/0269216313510588
Zafar SY, Peppercorn JM, Schrag D, et al. The financial toxicity of cancer treatment: A pilot study assessing out-of-pocket expenses and the insured cancer patient's experience. Oncologist 2013:18;381-90. DOI: https://doi.org/10.1634/theoncologist.2012-0279
Tilden VP, Thompson S. Policy issues in end-of-life care. J Prof Nurs 2009;25:363-8. DOI: https://doi.org/10.1016/j.profnurs.2009.08.005
Covinsky KE, Landefeld CS, Teno J, et al. Is economic hardship on the families of the seriously ill associated with patient and surrogate care preferences? Arch Intern Med 1996;156:1737-41. DOI: https://doi.org/10.1001/archinte.156.15.1737
Tucker-Seeley RD, Abel GA, Un~ H, Prigerson H. Financial hardship and the intensity of medical care received near death. Psycho-Oncol 2015;24:572-8. DOI: https://doi.org/10.1002/pon.3624
Hawkins NA, Ditto PH, Danks JH, Smucker WD. Micromanaging death: Process preferences, values, and goals in end-of-life medical decision making. Gerontologist 2005;25:107-17. DOI: https://doi.org/10.1093/geront/45.1.107
Alexander GC, Casalino LP, Meltzer DO. Patient-physician communication aboutout-of- pocket costs. J Am Med Assoc 2003;290:953-8. DOI: https://doi.org/10.1001/jama.290.7.953
Lathan CS, Cronin A, Tucker-Seeley R, et al. Association of financial strain with symptom burden and quality of life for patients with lung or colorectal cancer. J Clin Oncol 2016;34:1732-40. DOI: https://doi.org/10.1200/JCO.2015.63.2232
Masel EK, Berghoff AS, Schur S, et al. The PERS20N score for systemic assessment of symptomatology in palliative care: A pilot study. Eur J Cancer Care 2016;25:544-50. DOI: https://doi.org/10.1111/ecc.12419
Donley G, Danis M. Making the case for talking to.patients about the costs of end-of-life care. J Law Med Ethics 2011;39:183-93. DOI: https://doi.org/10.1111/j.1748-720X.2011.00587.x
Widera E, Steenpass V, Marson D, Sudorc:~ R. Finances in the older patient with cognitive impairment: He didn't want me to take over. J Am Med Assoc 2011;305:698-706. DOI: https://doi.org/10.1001/jama.2011.164
Martinez-Hume AC, Baker AM, Bell HS, et al. "They treat you a different way:" Public insurance, stigma, and the challenge to quality health care. Cult Med Psychiatry 2017;41:161-80. DOI: https://doi.org/10.1007/s11013-016-9513-8
Allen H, Wright BJ, Harding, Broffinan, L. The role of stigma in access to health care for the poor. Milbank Q 2014;92:289-318. DOI: https://doi.org/10.1111/1468-0009.12059
Hirsch JK, Sirois FM, Visser PL, et al. Perceived stigma and health-related quality of life in the working uninsured: Does thwarted belongingness play a role? Stigma Health 2019;4:1-10. DOI: https://doi.org/10.1037/sah0000116
Whittle HJ, Palar K, Ranadive NA, et al. "The land of the sick an4 the land of the healthy": Disability, bureaucracy, and stigma among people living with poverty and chronic illness in the United States. Soc Sci Med 2017;190:181-9. DOI: https://doi.org/10.1016/j.socscimed.2017.08.031
Patton M. Qualitative evaluation and research methods. Beverly Hills, CA: Sage Publications; 1990.
Baldwin MA. Patient advocacy: A concept analysis. Nurs Stand 2003;17:33-9. DOI: https://doi.org/10.7748/ns.17.21.33.s55
Petronio S, Sargent J, Andea, L, et al. Family and friends as healthcare advocates: Dilemmas of confidentiality and privacy. J Soc Pers Relat 2004;21:33-52. DOI: https://doi.org/10.1177/0265407504039838
Schwartz L. Is there an advocate in the house? The role of health care professionals inpatient advocacy. J Med Ethics 2002;28:37-40 DOI: https://doi.org/10.1136/jme.28.1.37
Ford T, Tartaglia A. The development, status, and future of healthcare chaplaincy. South Med J 2006;99:675-9. DOI: https://doi.org/10.1097/01.smj.0000220893.37354.1e
Wittenberg-Lyles E, Parker Oliver D, Demiris G, et al. Communication dynamics in hospice teams: Understanding the role of the chaplain in interdisciplinary team collaboration. J Palliat Med 2008;11:1330-5. DOI: https://doi.org/10.1089/jpm.2008.0165
Johnson KS, Elbert-Avila KI, Tulsky JA. The influence of spiritual beliefs and practices on the treatment preferences of African Americans: A review of the literature. J Am Geriatr Soc 2005;53:711-9. DOI: https://doi.org/10.1111/j.1532-5415.2005.53224.x
Bailey JJ, Sabbagh M, Loiselle CG, et al. Supporting families in the ICU: A descriptive correlational study of informational. support, anxiety, and satisfaction with care. Intens Crit Care Nur 2010;26:114-22. DOI: https://doi.org/10.1016/j.iccn.2009.12.006
Hebert K, Moore H, Rooney J. The nurse advocate in end-of-life care. Ochsner J 2011;11:325-9.
Spradley JP. The Ethnographic Interview. Long Grove, IL: Waveland Press; 1979.
Spradley JP. Participant Observation. Long Grove, IL: Waveland Press; 1980.
Tracy SJ. Qualitative research methods: Collecting evidence, crafting analysis, communicating impact. Malden, MA: Wiley-Blackwell; 2013.
Li H, Stewart BJ, Imle MA, et al. Families and hospitalized elders: A typology of family care actions. Res Nurs Health 2000;23:3-16. DOI: https://doi.org/10.1002/(SICI)1098-240X(200002)23:1<3::AID-NUR2>3.0.CO;2-U
Miller SC, Mor VNT. The role of hospice care in the nursing home setting. J Palliat Med 2002;5:271-7. DOI: https://doi.org/10.1089/109662102753641269
Lo B, Ruston D, Kates LW, et al. Discussing religious and spiritual issues at the end of life: A practical guide for physicians. J Am Med Assoc 2002;287:749-54. DOI: https://doi.org/10.1001/jama.287.6.749
Koenig HG. Spirituality in patient care: Why, how, when, and what 2nd ed. West Conshohocken, PA: Templeton Press; 2007. DOI: https://doi.org/10.1345/aph.1K479
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