https://doi.org/10.4081/qrmh.2017.6152

Resisting the hospice narrative in pursuit of quality of life

Vol. 1 No. 2 (2017)
Submitted: 11 July 2016
Accepted: 14 March 2017
Published: 21 July 2017
Death, End of life, Medical communication, Palliative care
Abstract Views: 2315
PDF: 1005
Publisher's note
All claims expressed in this article are solely those of the authors and do not necessarily represent those of their affiliated organizations, or those of the publisher, the editors and the reviewers. Any product that may be evaluated in this article or claim that may be made by its manufacturer is not guaranteed or endorsed by the publisher.

Authors

Jillian A. Tullis
jtullis@sandiego.edu
Department of Communication Studies, University of San Diego, San Diego, CA, United States.
Lori A. Roscoe
Department of Communication, University of South Florida, Tampa, FL, United States.
Patrick J. Dillon
School of Communication Studies, Kent State University at Stark, North Canton, OH, United States.
The overall hospice philosophy is to provide care that enhances a dying person’s quality of life. Most individual’s quality of life is improved when they embrace hospice eligibility and reimbursement requirements, such as stopping burdensome and ineffective curative treatment, addressing pain and other symptoms, and seeking avenues for closure. However, this institutionalized prescription for enhancing quality of life at the end of life does not work for all patients. This article considers what happens when patients’ personal definitions of quality of life at the end of life resist the prevailing narrative of appropriate hospice care. Using a series of examples from more than 600 hours of participant observation, our findings reveal narratives of resistance that fall into three themes: i) patients and/or family members who deny the imminence of death despite an admission to hospice; ii) patients who request treatments usually defined as curative; and iii) patients who resist the organizational constraints imposed by the institutionalization of the hospice model of care. Analysis of these themes illustrates the subjective nature of quality of life at the end of life and the pressures of standardization that may accompany the growth and maturity of the hospice industry in the United States.

Dimensions

Altmetric

PlumX Metrics

Downloads

Download data is not yet available.

Citations

Crossref
Scopus
Google Scholar
Europe PMC
National Hospice and Palliative Care Organization. What hospice means: learn what hospice care really means to patients and their families [Internet]. Alexandria, VA: National Hospice and Palliative Care Organization; 2014 May 8. Available from: http://www.nhpco.org/press-room/press-releases/what-hospice-means
Clark D. Total pain', disciplinary power and the body in the work of Cicely Saunders, 1958–1967. Social science & medicine. 1999 Sep 30;49(6):727-36. DOI: https://doi.org/10.1016/S0277-9536(99)00098-2
Byock IR, Merriman MP. Measuring quality of life for patients with terminal illness: the Missoula–VITAS® quality of life index. J Palliat Med. 1998 Jun 1;12(4):231-44. Available from DOI: 10.1191/026921698670234618 DOI: https://doi.org/10.1191/026921698670234618
Centers for Medicare and Medicaid Services. Medicare Care Choices Model. Baltimore, MD: Centers for Medicare and Medicaid Services; updated 2016 May 6; Available from: https://innovation.cms.gov/initiatives/Medicare-care-Choices/
Emmanuel, LL, Alpert, HR, Baldwin, DC, Emanuel, EJ. What terminally ill patients care about: toward a validated construct of patients’ perspectives. J Palliat Med [Internet]. 2000 Winter; 3(4):419-31. Available from: DOI: 10.1089/jpm.2000.3.4.419 DOI: https://doi.org/10.1089/jpm.2000.3.4.419
Johansson, CM, Axelsson, B, Danielson, E. Living with incurable cancer at the end of life—patients’ perceptions on quality of life. Cancer Nurs. 2006 Sep-Oct;29(5):391-9. DOI: https://doi.org/10.1097/00002820-200609000-00007
Singer, PA, Martin, DK, Kelner, M. Quality end-of-life care: Patients’ perspectives. JAMA. 1999;281(2):163-8. Available from: DOI:10.1001/jama.281.2.163. DOI: https://doi.org/10.1001/jama.281.2.163
Steinhauser, KE, Christakis, NA, Clipp, EC, McNeilly, M, Grambow, S, Parker, J, Tulsky, J A. Preparing for the end of life: Preferences of patients, families, physicians, and other care providers. J Pain Symptom Manage. 2001 Sep;22(3): 727-37. Available from: DOI: 10.1016/S0885-3924(01)00334-7. DOI: https://doi.org/10.1016/S0885-3924(01)00334-7
Steinhauser, KE, Christakis, NA, Clipp, EC, McNeilly, M, McIntyre, L, Tulsky, JA. Factors considered important at the end of life by patients, family, physicians, and other care providers. JAMA. 2000 Nov 15;284(19):2476-82. Available from: DOI:10.1001/jama.284.19.2476. DOI: https://doi.org/10.1001/jama.284.19.2476
Teno, JM, Casey, VA, Welch, LC, Edgman-Levitan, S. Patient-focused, family-centered end-of-life medical care: views of the guidelines and bereaved family members. J Pain Symptom Manage. 2001 Sept; 22(3):738-51. Available from: DOI: 10.1016/S0885-3924(01)00335-9. DOI: https://doi.org/10.1016/S0885-3924(01)00335-9
Gill, TM, Feinstein, AR. A critical appraisal of the quality of quality-of-life measurements. JAMA. 1994 Aug 24; 272(8):619-26. DOI:10.1001/jama.1994.03520080061045. DOI: https://doi.org/10.1001/jama.1994.03520080061045
Schonwetter, R. S., Roscoe, L. A., Nwosu, M., Zilka, B., & Kim, S. Quality-of-life and symptom control in hospice cancer patients receiving chemotherapy. J Palliat Med. 2006 Jun 9, 638-645. Available from: DOI:10.1089/jpm.2006.9.638 DOI: https://doi.org/10.1089/jpm.2006.9.638
Bochner, A. P., Ellis, C., & Tillmann-Healy, L. Relationships as stories. In S. Duck
(Ed.), Handbook of personal relationships: Theory, research, and interventions (2nd ed., pp. 307-324). New York: John Wiley; 1997.
Bruner, J. (1990). Acts of meaning. Cambridge, MA: Harvard University Press.
Temel JS, Greer JA, Muzikansky A, Gallagher ER, Admane S, Jackson VA, Dahlin CM, Blinderman CD, Jacobsen J, Pirl WF, Billings JA. Early palliative care for patients with metastatic non–small-cell lung cancer. New England Journal of Medicine. 2010 Aug 19;363(8):733-42. DOI: https://doi.org/10.1056/NEJMoa1000678
Connor SR, Pyenson B, Fitch K, Spence C, Iwasaki K. Comparing hospice and nonhospice patient survival among patients who die within a three-year window. Journal of pain and symptom management. 2007 Mar 31;33(3):238-46. DOI: https://doi.org/10.1016/j.jpainsymman.2006.10.010
Stanford University Palliative Medicine. Where do Americans die? [Internet]. Palo Alto, CA., Stanford School of Medicine; 2017. Available from: https://palliative.stanford.edu/home-hospice-home-care-of-the-dying-patient/where-do-americans-die/
Ariès, P. Western attitudes toward death: from the Middle Ages to the present. Baltimore, MD: Johns Hopkins University Press; 1974.
Kübler-Ross, E. On death and dying. New York: Macmillan; 1969.
Nussbaum, J. F. Giles, H. Worthington, A. (Eds). Communication at the end of life. New York: Peter Lang Publishing; 2015. DOI: https://doi.org/10.3726/978-1-4539-1366-6
Whitney, A. Discourse on or about dying: Palliative care. In Nussbaum, J. F. Giles, H. Worthington, A. (Eds). Communication at the end of life. New York: Peter Lang Publishing; 2015.
Tullis Owen, J. A. Communicating spirituality, dying and a "good death" at the end-of life:
The role of hospice interdisciplinary team members. Graduate Theses and Dissertations. University of South Florida. Available from: http://scholarcommons.usf.edu/etd/56
Mishler, EG. Patient stories, narratives of resistance and the ethics of humane care: a la recherché du temps perdu. Health (London). 2005 Oct 9(4):431-51: Available from: DOI: 10.1177/1363459305056412. DOI: https://doi.org/10.1177/1363459305056412
Stone-Mediatore, S. Reading across borders: storytelling and knowledges of resistance. New York: Palgrave Macmillan; 2003. DOI: https://doi.org/10.1007/978-1-137-09764-4
Dutta, M. Communicating health: a culture-centered approach. Cambridge: Polity; 2008.
Removed for blind review
Removed for blind review
Removed for blind review
Removed for blind review
Morse, JM. Confusing categories and themes. Qual Health Res 2008 June;18(6):727-28. Available from: DOI: 10.1177/1049732308314930 DOI: https://doi.org/10.1177/1049732308314930
Christakis, NA. Death foretold: Prophecy and prognosis in medical care. Chicago, IL: University of Chicago Press; 2001.
Roscoe, LA, Tullis, JA, Reich, RR, McCaffrey, JC. (2013). Beyond good intentions and patient perceptions: competing definitions of effective communication in head and neck cancer care at the end of life. Health Commun. 2013;28(2):183-192. Available from: DOI: 10.1080/10410236.2012.666957 DOI: https://doi.org/10.1080/10410236.2012.666957
Quill, TE. (2000). Initiating end-of-life discussions with seriously ill patients: addressing the “elephant in the room.” JAMA. 2000 Nov 15;284(19): 2502-2507. Available from: DOI:10.1001/jama.284.19.2502. DOI: https://doi.org/10.1001/jama.284.19.2502
Ellis, C. Beyond measure: The role of stories, conversations, and personal narratives in quality of life research. J Med Pers. 2008 Sept; 6:104-112.
Bochner, AP. Vulnerable medicine. J Appl Commun Res. 2009;37:159-166. Available from: DOI: 10.1080/00909880902792214 DOI: https://doi.org/10.1080/00909880902792214
Teno, J. M., Plotzke, M., Gozalo, P., & Mor, V. (2014). A national study of live discharges from hospice. Journal of palliative medicine, 17(10), 1121-1127. DOI: https://doi.org/10.1089/jpm.2013.0595
Dillon, P. J., & Basu, A. (2016). African Americans and hospice care: A culture-centered exploration of enrollment disparities. Health Communication, 11, 1385-1394. DOI: https://doi.org/10.1080/10410236.2015.1072886
Dillon, P. J., & Roscoe, L. A. (2015). African Americans and hospice care: A narrative analysis. Narrative Inquiry in Bioethics, 5, 151–165. DOI: https://doi.org/10.1353/nib.2015.0049
Zellner, RA, Aulisio, MP, Lewis, WR. Should implantable cardioverter-defibrillators and permanent pacemakers in patients with terminal illness be deactivated? Circ Arrhythm Electrophysiol. 2009;2:340-44. Available from: DOI: 10.1161/CIRCEP.109.848523 DOI: https://doi.org/10.1161/CIRCEP.109.848523
Sulmasy, DP. Within you/without you: biotechnology, ontology, and ethics. J Gen Intern Med. 2008 Jan; 23(Suppl 1): 69–72. Available from: DOI: 10.1007/s11606-007-0326-x DOI: https://doi.org/10.1007/s11606-007-0326-x
Kay, GN, & Bittner, GT. Deactivating implantable cardioverter-defibrillators and permanent pacemakers: an ethical distinction. Circ Arrhythm Electrophysiol. 2009;2:336-39. Available from: DOI: 10.1161/CIRCEP.108.821975 DOI: https://doi.org/10.1161/CIRCEP.108.821975
Kapa, S, Mueller, PS, Hayes, DL, Asirvatham, SJ. Perspectives on withdrawing pacemaker and implantable cardioverter-defibrillator therapies at the end of life: results of a survey of medical and legal professionals and patients. Mayo Clin Pro. 2010 Nov;85(11):981-90. Available from: DOI: http://dx.doi.org/10.4065/mcp.2010.0431 DOI: https://doi.org/10.4065/mcp.2010.0431
Morganweck, CJ. (2013). Ethical considerations for discontinuing pacemakers and automatic implantable cardiac defibrillators at the end-of-life. Curr Opin Anaesthesiol. 2013 Apr;26(2):171-5. Available from: DOI: 10.1097/ACO.0b013e32835e8349. DOI: https://doi.org/10.1097/ACO.0b013e32835e8349
Medicare Program; FY 2017 Hospice Wage Index and Payment Rate Update and Hospice Centers for Medicaid and Medicare Services Department of Health and Human Services. 5 Aug 2016 Available from: http://federalregister.gov/a/2016-18221
Stevenson, D. & Huskamp, H. Hospice Payment Reforms Are A Modest Step Forward, But More Changes Are Needed. 4 Jan 2016. Available from: http://healthaffairs.org/blog/2016/01/04/hospice-payment-reforms-are-a-modest-step-forward-but-more-changes-are-needed/
Ahrne, G. Agency and organization: towards an organizational theory of society. Thousand Oaks, CA: Sage; 1990.
Jillian A. Tullis, Department of Communication Studies, University of San Diego, San Diego, CA
Assistant Professor
Lori A. Roscoe, Department of Communication, University of South Florida, Tampa, FL
Associate Professor
Patrick J. Dillon, School of Communication Studies, Kent State University at Stark, North Canton, OH
Assistant Professor

How to Cite

Tullis, Jillian A., Lori A. Roscoe, and Patrick J. Dillon. 2017. “Resisting the Hospice Narrative in Pursuit of Quality of Life”. Qualitative Research in Medicine and Healthcare 1 (2). https://doi.org/10.4081/qrmh.2017.6152.

PAGEPress has chosen to apply the Creative Commons Attribution NonCommercial 4.0 International License (CC BY-NC 4.0) to all manuscripts to be published.