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Evidence of palliative care stigma: The role of negative stereotypes in preventing willingness to use palliative care

Published online by Cambridge University Press:  06 December 2018

Megan Johnson Shen Open the ORCID record for Megan Johnson Shen [Opens in a new window]  and
Joseph D. Wellman
Megan Johnson Shen*
Affiliation:
Department of Medicine, Weill Cornell Medicine, New York, NY
Joseph D. Wellman
Affiliation:
Department of Psychology, California State University San Bernardino, San Bernardino, CA
*
Author for correspondence: Megan Johnson Shen, Psychology in Medicine, Weill Cornell Medicine, 525 East 68th St, Box 39, New York, NY 10065. E-mail: mes2050@med.cornell.edu
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Abstract

Objective

Although palliative care is critical to managing symptoms, pain, and transitions to end-of-life care among those facing serious or chronic illness, it is often underused, which may be due to stigma associated with palliative care representing giving up fighting one's illness. The goal of the present studies was to test the theoretical framework of stigma within the context of palliative care to inform future work on intervention development that addresses potential barriers to palliative care utilization.

Method

In study 1, participants (n = 152) had an oncologist describe two treatment options to a terminally ill cancer patient: (1) palliative care and (2) chemotherapy. Participants were then randomly assigned to read that the patient chose palliative care or chemotherapy. In study 2, these stereotypes about those receiving palliative care were examined as a potential mediator between perceived palliative care stigma and prospective palliative care use. Participants (n = 199) completed self-report measures of palliative care stigma, negative stereotypes about palliative care users, and prospective use of palliative care. Mediation analysis tested the mediational effects of stereotypes on the relationship between palliative care stigma and prospective usage of palliative care.

Result

In study 1, those in the palliative care condition endorsed significantly higher levels of negative stereotypes about the patient, viewed the decision more negatively, and saw the patient as less afraid of death. In study 2, palliative care stigma was associated with less prospective usage of palliative care for self and for one's family member. This relationship was mediated by negative stereotypes about individuals receiving palliative care.

Significance of results

Results suggest that palliative care stigma exists (study 1) and that this stigma may be a barrier to the utilization of palliative care (study 2). Future research should examine stigma reduction as a potential intervention target to improve palliative care utilization.

Keywords

Palliative careStigmaStereotypes
Type
Original Article
Information
Palliative & Supportive Care , Volume 17 , Issue 4 , August 2019 , pp. 374 - 380
Copyright
Copyright © Cambridge University Press 2018 

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Footnotes

*

Megan Johnson Shen and Joseph D. Wellman are sharing first authorship.

References

Ablon, J (2002) The nature of stigma and medical conditions. Epilepsy & Behavior 3(6), 2–9.Google Scholar
Aries, P (1981) The Hour of Our Death. New York: Vintage books.Google Scholar
Carter-Harris, L, Hermann, CP, Schreiber, J, et al. (2014) Lung cancer stigma predicts timing of medical help–seeking behavior. Oncology Nursing Forum (3), E203–E210.Google Scholar
Cheng, WW, Willey, J, Palmer, JL, et al. (2005) Interval between palliative care referral and death among patients treated at a comprehensive cancer center. Journal of Palliative Medicine 8(5), 1025–1032.Google Scholar
Chesney, MA and Smith, AW (1999) Critical delays in HIV testing and care the potential role of stigma. American Behavioral Scientist 42(7), 1162–1174.Google Scholar
Cooper, AE, Corrigan, PW, and Watson, AC (2003) Mental illness stigma and care seeking. The Journal of Nervous and Mental Disease 191(5), 339–341.Google Scholar
Corrigan, P (2004) How stigma interferes with mental health care. American Psychologist 59(7), 614.Google Scholar
Crocker, J, Major, B, and Steele, C (1998) Social stigma. In The Handbook of Social Psychology. Gilbert, D, Fiske, S, and Lindzey, G (eds.), pp. 504–553. New York, NY: Cambridge University Press.Google Scholar
Field, MJ and Cassel, CK (1997) Approaching death: Improving care at the end of life. Washington, DC: National Academy Press.Google Scholar
Friedrichsen, MJ, Strang, PM, and Carlsson, ME (2002) Cancer patients' interpretations of verbal expressions when given information about ending cancer treatment. Palliative Medicine 16(4), 323–330.Google Scholar
Goffman, E (2009). Stigma: Notes on the management of spoiled identity. SimonandSchuster.com.Google Scholar
Golberstein, E, Eisenberg, D, and Gollust, SE (2008) Perceived stigma and mental health care seeking. Psychiatric Services 59(4), 392–399.Google Scholar
Hamann, HA, Ostroff, JS, Marks, EG, et al. (2014) Stigma among patients with lung cancer: A patient reported measurement model. Psycho-Oncology 23, 81–92.Google Scholar
Hayes, AF (2013) Introduction to mediation, moderation, and conditional process analysis: A regression-based approach. New York, NY: Guilford Press.Google Scholar
Heatherton, TF, Kleck, RE, Hebl, MR, et al. (2003) The social psychology of stigma. New York, NY: Guilford Press.Google Scholar
Higginson, IJ, Finlay, I, Goodwin, DM, et al. (2002) Do hospital-based palliative teams improve care for patients or families at the end of life? Journal of Pain and Symptom Management 23(2), 96–106.Google Scholar
Holland, JC, Kelly, BJ, and Weinberger, MI (2010) Why psychosocial care is difficult to integrate into routine cancer care: Stigma is the elephant in the room. Journal of the National Comprehensive Cancer Network 8(4), 362–366.Google Scholar
Hui, D, Elsayem, A, De La Cruz, M, et al. (2010) Availability and integration of palliative care at US cancer centers. JAMA 303(11), 1054–1061.Google Scholar
Kelley, AS and Morrison, RS (2015) Palliative care for the seriously ill. New England Journal of Medicine 373(8), 747–755.Google Scholar
Litman, L, Robinson, J, and Abberbock, T (2017) TurkPrime.com: A versatile crowdsourcing data acquisition platform for the behavioral sciences. Behavior Research Methods 49(2), 433–442.Google Scholar
Major, B and O'Brien, LT (2005) The social psychology of stigma. Annual Review of Psychology 56, 393–421.Google Scholar
Morita, T, Akechi, T, Ikenaga, M, et al. (2005) Late referrals to specialized palliative care service in Japan. Journal of Clinical Oncology 23(12), 2637–2644.Google Scholar
Morrison, RS and Meier, DE (2004) Palliative care. New England Journal of Medicine 350(25), 2582–2590.Google Scholar
National Palliative Care Research Center (2013) About palliative care: What is palliative care? Available at http://www.npcrc.org/content/15/About-Palliative-Care.aspxGoogle Scholar
Onyeka, TC (2010). Psychosocial issues in palliative care: A review of five cases. Indian Journal of Palliative Care 16(3), 123–128.Google Scholar
Osta, BE, Palmer, JL, Paraskevopoulos, T, et al. (2008). Interval between first palliative care consult and death in patients diagnosed with advanced cancer at a comprehensive cancer center. Journal of Palliative Medicine 11(1), 51–57.Google Scholar
Reisfield, GM and Wilson, GR (2004) Use of metaphor in the discourse on cancer. Journal of Clinical Oncology 22(19), 4024–4027.Google Scholar
Schomerus, G and Angermeyer, MC (2008) Stigma and its impact on help-seeking for mental disorders: What do we know? Epidemiologia e Psichiatria Sociale 17(01), 31–37.Google Scholar
Smith, TJ, Temin, S, Alesi, ER, et al. (2012) American Society of Clinical Oncology provisional clinical opinion: The integration of palliative care into standard oncology care. Journal of Clinical Oncology 30(8), 880–887.Google Scholar
World Health Organization (2008) Palliative care definition. Available at http://www.who.int/cancer/palliative/definition/en/Google Scholar
Zimmermann, C, Swami, N, Krzyzanowska, M, Leighl, N, Rydall, A, Rodin, G, Tannock, I and Hannon, B (2016) Perceptions of palliative care among patients with advanced cancer and their caregivers. Canadian Medical Association Journal 188(10), E217–E227.Google Scholar