Advertisement

“We’re Not Ready to Give Up”

  • Anthony Michael Zepeda
Chapter

Abstract

In this chapter, we will explore a case involving a 43-year-old woman with metastatic breast cancer and her care. The chapter will prompt discussion and further thought about quality of life, ethics in medicine, justice in healthcare, and healthcare costs. At the conclusion of the case discussion, learners will be able to apply ethical principles to end-of-life care, analyze cost of such care in the US healthcare system, and identify conversational tools to facilitate discussion of palliative care.

Keywords

End of life Healthcare costs Hospice care Medical futility Palliative care 

Notes

Acknowledgments

This case was adapted from an earlier case written by Amy Caruso Brown and was inspired in part by Atul Gawande’s essay, “What Should Medicine Do When It Can’t Save You?,” published in the New Yorker magazine in August 2010.

References

  1. 1.
    Whalen J. Doctors object to high cancer-drug prices. Wall Street Journal [Internet]. 2015 Jul 23 [cited 2018 May 20]. Available from: https://www.wsj.com/articles/doctors-object-to-high-cancer-drug-prices-1437624060.
  2. 2.
    Novartis receives first ever FDA approval for a CAR-T cell therapy, Kymriah(TM) (CTL019), for children and young adults with B-cell ALL that is refractory or has relapsed at least twice [Internet]. Novartis: Basel (Switzerland). [cited 2018 May 20]. Available from: https://www.novartis.com/news/media-releases/novartis-receives-first-ever-fda-approval-car-t-cell-therapy-kymriahtm-ctl019.
  3. 3.
    Centers for Medicare and Medicaid Services. National health expenditures 2016 highlights [Internet]. Baltimore (MD): CMS. [cited 2018 May 21]. Available from: https://www.cms.gov/research-statistics-data-and-systems/statistics-trends-and-reports/nationalhealthexpenddata/downloads/highlights.pdf.
  4. 4.
    Riley GF, James D, Lubitz JD. Long-term trends in medicare payments in the last year of life. Health Serv Res. 2010;45(2):565–76.CrossRefGoogle Scholar
  5. 5.
    French EB, McCauley J, Aragon M, Bakx P, Chalkley M, Chen SH, et al. End-of-life medical spending in last twelve months of life is lower than previously reported. Health Aff. 2017;36(7):1211–7.CrossRefGoogle Scholar
  6. 6.
    Aldridge MD, Keeley AS. The myth regarding the high cost of end-of-life care. Am J Public Health. 2015;105(12):2411–5.CrossRefGoogle Scholar
  7. 7.
    World Health Organization. WHO definition of palliative care [Internet]. Geneva: WHO. [cited 2018 May 31]. Available from: http://www.who.int/cancer/palliative/definition/en/.
  8. 8.
    Gomes B, Calanzani N, Curiale V, McCrone P, Higginson IJ. Effectiveness and cost-effectiveness of home-based palliative care services for adults with advanced illness and their caregivers. Cochrane Database Syst Rev. 2013;6(6):CD007760. Available from: http://www.cochrane.org/CD007760/SYMPT_effectiveness-and-cost-effectiveness-home-based-palliative-care-services-adults-advanced-illness-and.Google Scholar
  9. 9.
    National Hospice and Palliative Care Organization. Facts and figures of hospice care in America [Internet]. Alexandria (VA): NHPCO; 2017 [cited 2018 May 31]. Available from: https://www.nhpco.org/hospice-statistics-research-press-room/facts-hospice-and-palliative-care.
  10. 10.
    Kaiser Family Foundation. 10 FAQs: Medicare’s role in end-of-life care [Internet]. San Francisco (CA): KFF; 2016 Sep 26 [cited 2018 May 31]. Available from: https://www.kff.org/medicare/fact-sheet/10-faqs-medicares-role-in-end-of-life-care/.
  11. 11.
    Hamel L, Wu B, Brodie M. Views and experiences with end-of-life medical care in the U.S. [Internet]. San Francisco (CA): Kaiser Family Foundation; 2017 [2018 Jun 1]. Available from: https://www.kff.org/report-section/views-and-experiences-with-end-of-life-medical-care-in-the-us-findings/.
  12. 12.
    Lau F, Downing M, Lesperance M, Karlson N, Kuziemsky C, Yang J. Using the palliative performance scale to provide meaningful survival estimates. J Pain Symptom Manag. 2009;38(1):134–44.CrossRefGoogle Scholar
  13. 13.
    Harris PS, Stalam T, Ache KA, Harrold JE, Craig T, Teno J, et al. Can hospices predict which patients will die within six months? J Palliat Med. 2014;17(8):894–8.CrossRefGoogle Scholar
  14. 14.
    National Health Service. About the NHS [Internet]. London (UK): NHS. [cited 2018 Jun 2]. Available from: https://www.nhs.uk/NHSEngland/thenhs/Pages/thenhshome.aspx.
  15. 15.
    The National Institute for Health and Care Excellence (NICE). Who we are [Internet]. London (UK): NICE. [cited 2018 Jun 2]. Available from: https://www.nice.org.uk/about.
  16. 16.
    The National Institute for Health and Care Excellence (NICE). Changes to NICE drug appraisals: what you need to know [Internet]. London UK: NICE. [cited 2018 Jun 2]. Available from: https://www.nice.org.uk/news/feature/changes-to-nice-drug-appraisals-what-you-need-to-know.
  17. 17.
    Department of Health and Human Services, Centers for Medicare & Medicaid Services. Medicare program: revised process for making national coverage determinations. Notices. Federal Register. 2013 August 7; 78(152). [cited 2018 Jun 2]. Available from: https://www.cms.gov/Medicare/Coverage/DeterminationProcess/Downloads/FR08072013.pdf.
  18. 18.
    U.S. Department of Labor. FAQs on COBRA continuation health coverage [Internet]. Baltimore (MD): Centers for Medicare and Medicaid Services. [cited 2018 Jun 2]. Available from: https://www.dol.gov/sites/default/files/ebsa/about-ebsa/our-activities/resource-center/faqs/cobra-continuation-health-coverage-consumer.pdf.
  19. 19.
    Schneiderman L. Defining medical futility and improving medical care. J Bioeth Inq. 2011;8(2):123–31.CrossRefGoogle Scholar
  20. 20.
    Oxford American handbook of hospice and palliative medicine and supportive care. Yennurajalingam S, Bruera E, editors. 2nd ed. New York: Oxford American Handbooks in Medicine; 2016. Chapter 24: 302.Google Scholar
  21. 21.
    Beauchamp T, Childress JF. Principles of biomedical ethics. 7th ed. New York: Oxford University Press; 2012.Google Scholar
  22. 22.
    National Conference of Commissioners on Uniform State Laws. The Uniformed Health-care Decisions Act [Internet]. 1993 [cited 2018 Jun 5]. Available from: http://www.uniformlaws.org/shared/docs/health%20care%20decisions/uhcda_final_93.pdf.
  23. 23.
    Pope T. Medical futility statutes: no Safe Harbor to unilaterally refuse life-sustaining treatment. Tennessee L Rev. 2007;71(Fall):1–81.Google Scholar
  24. 24.
    Lantos JD. Bethann’s death. J Emerg Med. 1995;13(6):843–5.CrossRefGoogle Scholar
  25. 25.
    Zhukosvsky DS, Robert R. Chapter 27. Pediatric palliative care. In: Yennurajalingam S, Bruera E, editors. Oxford American handbook of hospice and palliative medicine and supportive care. 2nd ed. New York: Oxford University Press; 2016. p. 357–8.Google Scholar
  26. 26.
    McCue K. How to help children through a parent’s serious illness. New York: St. Martin’s Press; 1994.Google Scholar
  27. 27.
    Baile WF, Buckman R, Lenzi R, Glober G, Beale EA, Kudelka AP. SPIKES—a six-step protocol for delivering bad news: application to the patient with cancer. Oncologist. 2000;5(4):302.CrossRefGoogle Scholar
  28. 28.
    Villagran M, Goldsmith J, Wittenberg-Lyles E, Baldwin P. Creating COMFORT: a communication-based model for breaking bad news. Commun Educ. 2010;59(3):220–34.  https://doi.org/10.1080/03634521003624031.CrossRefGoogle Scholar
  29. 29.
    Carver R. What the doctor said. The Washington Post [Internet]. 1991 Apr 16 [cited 2018 Jun 1]. Available from: https://www.washingtonpost.com/archive/lifestyle/wellness/1991/04/16/what-the-doctor-said/2f7f3a97-12d9-4eb3-afef-b76b7a2b87f0/?noredirect=on&utm_term=.581e23bb4894.
  30. 30.
    Montello M. Narrative ethics. Hastings Cent Rep. 2014;44:S2–6.  https://doi.org/10.1002/hast.260.CrossRefPubMedGoogle Scholar
  31. 31.
    Del Vecchio Good MJ, Good BJ, Schaffer C, Lind SE. American oncology and the discourse on hope. Cult Med Psychiatry. 1990;14(1):59–79.CrossRefGoogle Scholar
  32. 32.
    Kalanithi P. How long have I got left? The New York Times [Internet]; 2014 Jan 24. Available from: https://www.nytimes.com/2014/01/25/opinion/sunday/how-long-have-i-got-left.html.
  33. 33.
    Gorenstein D. Do high-deductible plans make the health care system better? Marketplace [Internet]; 2017 Jan 18 [cited 2018 Jun 6]. Available from: https://www.marketplace.org/2017/01/18/health-care/cost-vs-care.
  34. 34.
    Russell L. The science of making better decisions about health [Internet]. Rockville (MD): Agency for Healthcare Research and Quality. [cited 2018 Jun 7]. Available from: https://www.ahrq.gov/professionals/education/curriculum-tools/population-health/russell.html.
  35. 35.
    Mailankody S, Prasad V. Five years of Cancer drug approvals: innovation, efficacy, and costs. JAMA Oncol. 2015;1(4):539–40.  https://doi.org/10.1001/jamaoncol.2015.0373.CrossRefPubMedGoogle Scholar
  36. 36.
    Anderson R. Pharmaceutical industry gets high on fat profits. BBC [Internet]; 2014. Nov 6 [cited 2018 Jun 7]. Available from: https://www.bbc.com/news/business-28212223.
  37. 37.
    Tamborini CR, Kim C, Sakamoto A. Education and lifetime earnings in the United States. Demography. 2015;52:1383.  https://doi.org/10.1007/s13524-015-0407-0.CrossRefPubMedPubMedCentralGoogle Scholar
  38. 38.
    Gawande A. What should medicine do when it can’t save you? The New Yorker [Internet]. 2010 Aug 2. Available from: https://www.newyorker.com/magazine/2010/08/02/letting-go-2.

Further Reading on This Topic

  1. Cone J. There is no such thing as “free” vaccines: why we rejected Pfizer’s donation offer of pneumonia vaccines. New York: Doctors Without Borders; 2016. Available from: https://www.doctorswithoutborders.org/article/there-no-such-thing-%E2%80%9Cfree%E2%80%9D-vaccines-why-we-rejected-pfizer%E2%80%99s-donation-offer-pneumonia.
  2. Kalanithi P. When breath becomes air. New York: Random House; 2016.Google Scholar
  3. Riggs N. The bright hour: a memoir of living and dying. New York: Simon & Schuster; 2017.Google Scholar

Copyright information

© Springer Nature Switzerland AG 2019

Authors and Affiliations

  • Anthony Michael Zepeda
    • 1
  1. 1.Department of Palliative Care and Family MedicineUniversity of North Texas Health Science Center, John Peter Smith HospitalFort WorthUSA

Personalised recommendations