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Transitioning to End-of-Life Care

  • Lillie D. Shockney
Chapter

Abstract

Although more and more people in the USA diagnosed with cancer today are surviving their disease and its treatment, 595,690 people died of cancer in 2016 (www.cancer.org/research/cancer-facts-statistics/all-cancer-facts-figures/cancer-facts-figures-2016.html.). This is in part due to more individuals being diagnosed with cancer today, given that baby boomers have become senior citizens, increasing the denominator of the population today, which in turn increases the numerator among those diagnosed with some life-threatening form of cancer. Navigators must provide support across the continuum of care, including when the final outcome will be death instead of long-term survivorship as hoped. Patients dealing with advanced cancers require a strong advocate to represent them when they are not able to speak up for themselves. Misinformation and confusion remain about the benefits of palliative care and hospice, which can result in patients not getting the support they need physically and emotionally as they approach the end of life. All patients in such situations deserve and have the right to experience a good death. Nurse navigators have an instrumental role in patient advocacy, facilitating improved communication among the treatment team and the patient as well as their family caregivers, and promoting the utilization of palliative care early on and hospice care when the time is appropriate to make such a referral. Navigators savvy in navigating patients transitioning to end of life should take great pride in supporting such patients during the most sensitive, vulnerable, and profound time in their lives. This can all be accomplished by understanding the role hope plays in the patient’s care and helping the patient to transition through each phase of hope. There are also known barriers to such a transition, particularly when the transition should include implementation of certain resources like palliative care and hospice services. This chapter focuses on all of these issues, recognizing along this trajectory that navigation is a solution to prevention of these barriers, as well as an effective resource to ensure the patient has an advocate to speak on their behalf if they are unable to do so for themselves. The final outcome should be the orchestration of a good death for the patient, with their family caregivers well prepared for this loss. When patients are distressed that they will not “be here” to witness specific milestones that will happen in the future among their family members, especially young children, navigators can play an instrumental role in working with the patient to identify alternative methods to fulfill these hopes and life goals. Taking on such a role on behalf of the patient is one of the most profound ways to support a patient and help them transition as needed so they experience a peaceful, good death.

References

  1. 1.
    Faguet GB. Quality end-of-life cancer care: an overdue imperative. Crit Rev Oncol Hematol. 2016;108:69–72.CrossRefPubMedPubMedCentralGoogle Scholar
  2. 2.
    Coelho A, Barbosa A. Family anticipatory grief: an integrative literature review. Am J Hosp Palliat Med. 2017;34(8):774–85.CrossRefGoogle Scholar
  3. 3.
    Beng TS, Guan NC, Seang LK, et al. The experiences of suffering of palliative care informal caregivers in Malaysia: a thematic analysis. Am J Hosp Palliat Care. 2013;30(5):473–89.CrossRefPubMedPubMedCentralGoogle Scholar
  4. 4.
    National Institute for Health and Care Excellence. Quality standards for end of life care for adults; October 2013.Google Scholar
  5. 5.
    Emanual LL, von Gunten CF, Ferris FD. The education for physicians on end of life care curriculum. 1999. www.amaassn.org/ethic/epec. Accessed 6 Mar 2017.
  6. 6.
    Institute of Medicine. Dying in America: improving quality and honoring individual preferences near the end of life. Washington, DC: The National Academies Press; 2014. p. 17.Google Scholar
  7. 7.
    Menninger K. The academic lecture: hope. Am J Psychiatr. 1959;116(12):481–91.CrossRefGoogle Scholar
  8. 8.
    Clark E. You have the right to be hopeful. 4th ed. National Coalition of Cancer Survivorship; 2008.Google Scholar
  9. 9.
    Groopman J. The anatomy of hope: how people prevail in the face of illness. New York: Random House; 2005.Google Scholar
  10. 10.
    Shockney L. Fulfilling hope: supporting the needs of patients with advanced cancers. New York: Nova Science; 2014.Google Scholar
  11. 11.
    Nuland S. How we die. New York: Random House; 1959.Google Scholar
  12. 12.
    Kylma J, Vehvilainen-Julkunen K. Hope in nursing research: a meta-analysis of the ontological and epistemological foundation of research on hope. J Adv Nurs. 1984;25(2001):364–71.CrossRefPubMedPubMedCentralGoogle Scholar
  13. 13.
    Hinds PS. Inducing a definition of ‘hope’ through the grounded theory methodology. J Adv Nurs. 1984;9(4):357–62.CrossRefPubMedPubMedCentralGoogle Scholar
  14. 14.
    Herth K. Fostering hope in terminally-ill people. J Adv Nurs. 1990;15:1250–9.CrossRefPubMedPubMedCentralGoogle Scholar
  15. 15.
    Schneider JS. Hopelessness and helplessness. J Psychiatr Nurs Ment Health Serv. 1980;18:12–21.PubMedPubMedCentralGoogle Scholar
  16. 16.
    Rustoen T. Hope and quality of life, two central issues for cancer patients: a theoretical analysis. Cancer Nurs. 1995;18(5):355–61.PubMedPubMedCentralGoogle Scholar
  17. 17.
    Stotland E. The psychology of hope. San Francisco: Jossey-Bass; 1969.Google Scholar
  18. 18.
    Clyton J, Butow P, Arnold R, et al. Fostering coping and nurturing hope when discussing the future with terminally ill cancer patients and their caregivers. Cancer. 2005;103(9):1965–75.CrossRefGoogle Scholar
  19. 19.
    MacCormick T, Simoniam J, Lim J, et al. “Someone who cares”: a quantitative investigation of cancer patients’ experience of psychotherapy. Psycho-Oncology. 2001;10:52–6.CrossRefGoogle Scholar
  20. 20.
    Duggleby W, Williams A. Living with hope: developing psycho-social supportive program for rural women caregivers of persons with advanced cancer. BMC Palliat Care. 2010;9:3.CrossRefPubMedPubMedCentralGoogle Scholar
  21. 21.
    Mariotto AB, Yabroff KR, Shao Y, et al. Projections of the cost of cancer care in the United States, 2010–2020. J Natl Cancer Inst. 2011;103:117–28.CrossRefPubMedPubMedCentralGoogle Scholar
  22. 22.
    Smith TJ, Hillner BE. Concrete options and ideas for increasing value in oncology care: the view from one trench. Oncologist. 2010;15:65–72.CrossRefGoogle Scholar
  23. 23.
    Evans WG, Tulsky JA, Back AL, et al. Communication at times of transitions: how to help patients cope with loss and re-define hope. Cancer J. 2006;12:417–24.CrossRefGoogle Scholar
  24. 24.
    Benzein E, Norberg A, Saveman BI. The meaning of the lived experience of hope in patients with cancer in palliative home care. Palliat Med. 2001;15:117–26.CrossRefGoogle Scholar
  25. 25.
    Taylor C. Rethinking hopelessness and the role of spiritual care when cure is no longer an option. J Pain Symptom Manag. 2012;44(4):626–30.CrossRefGoogle Scholar
  26. 26.
    National Library of Medicine, National Institutes of Health. Planning the transition to end-of-life care in advanced cancer. NCBI Bookshelf. Health professional version. https://www.ncbi.nlm.nih.gov/books/NBK223164. Accessed 21 Jan 2016.
  27. 27.
    Singer PA, Martin DK, Kelner M. Quality end of life care: patients’ perspective. JAMA. 1999;281(2):163–8.CrossRefGoogle Scholar
  28. 28.
    Jones JM, McPherson CJ, Zimmerman C, et al. Assessing agreement between terminally ill cancer patients’ reports of their quality of life and family caregiver and palliative care physician proxy ratings. J Pain Symptom Manag. 2011;42(3):354–65.CrossRefGoogle Scholar
  29. 29.
  30. 30.
    Bergman J, Saigal CS, Lorenz KA, et al. Hospice use and high intensity care in men dying of prostate cancer. Arch Intern Med. 2011;171(3):204–10.CrossRefPubMedPubMedCentralGoogle Scholar
  31. 31.
    Levin TT, Li Y, Weiner JS, et al. How do-not-resuscitate orders are utilized in cancer patients: timing relative to death and communication-training implications. Palliat Support Care. 2008;6(4):341–8.CrossRefPubMedPubMedCentralGoogle Scholar
  32. 32.
    Elkin EB, Kim SH, Casper ES, et al. Desire for information and involvement in treatment decisions: elderly cancer patients’ preferences and their physicians’ perceptions. J Clin Oncol. 2007;25(33):5275–80.CrossRefPubMedPubMedCentralGoogle Scholar
  33. 33.
    Fletcher K, Prigerson HG, Paulk E, et al. Gender differences in the evolution of illness understanding among patients with advanced cancer. J Support Oncol. 2013;11(3):126–32.CrossRefPubMedPubMedCentralGoogle Scholar
  34. 34.
    Loggers ET, Maciejewski PK, Paulk E, et al. Racial differences in predictors of intensive end-of-life care in patients with advanced cancer. J Clin Oncol. 2009;27(33):5559–64.CrossRefPubMedPubMedCentralGoogle Scholar
  35. 35.
    Mack JW, Paulk ME, Viswanath K, Prigerson HG. Racial disparities in the outcomes of communication on medical care received near death. Arch Intern Med. 2010;170(17):1533–40.CrossRefPubMedPubMedCentralGoogle Scholar
  36. 36.
    Smith AK, Earle CC, McCarthy EP. Racial and ethnic differences in end-of-life care in fee-for-service Medicare beneficiaries with advanced cancer. J Am Geriatr Soc. 2009;57(1):153–8.CrossRefPubMedPubMedCentralGoogle Scholar
  37. 37.
    Haas JS, Earle CC, Orav JE, et al. Lower use of hospice by cancer patients who live in minority versus white areas. J Gen Intern Med. 2007;22(3):396–9.CrossRefPubMedPubMedCentralGoogle Scholar
  38. 38.
    Mack JW, Chen K, Boscoe FP, et al. Underuse of hospice care by Medicaid-insured patients with stage IV lung cancer in New York and California. J Clin Oncol. 2013;31(20):2560–79.CrossRefGoogle Scholar
  39. 39.
    Sharma RK, Dy SM. Documentation of information and care planning for patients with advanced cancer: associations with patient characteristics and utilization of hospice care. Am J Hosp Palliat Care. 2011;28(8):543–9.CrossRefPubMedPubMedCentralGoogle Scholar
  40. 40.
    McCarthy EP, Burns RB, Ngo-Metzger Q, et al. Hospice use among Medicare managed care and fee-for-service patients dying of cancer. JAMA. 2003;289(17):2238–45.CrossRefPubMedGoogle Scholar
  41. 41.
    Paragament KI, Smoth BW, Koenig HG, Perez L. Patterns of positive and negative religious coping with major life stressors. J Sci Study Relig. 1998;37(4):710–24.CrossRefGoogle Scholar
  42. 42.
    Mack JW, Weeks JC, Wright AA, et al. End of life discussions, goal attainment, and distress at the end of life: predictors and outcomes of receipt of care consistent with preferences. J Clin Oncol. 2010;28(7):1203–8.CrossRefPubMedPubMedCentralGoogle Scholar
  43. 43.
    Pardon K, Deschepper R, Vander Stichele R, et al. Are patients’ preferences for information and participation in medical decision making being met? Interview study with lung cancer patients. Palliat Med. 2011;25(1):62–90.CrossRefPubMedGoogle Scholar
  44. 44.
    Na H, Ditto PH, Danks JH, et al. Micromanaging death: process preferences, values, and goals in end of life medical decision making. Gerontologist. 2005;45(1):107–17.CrossRefGoogle Scholar
  45. 45.
    Fried TR, Bradley EH, O’Leary J. Prognosis communication in serious illness: perceptions of older patients, caregivers, and clinicians. J Am Geriatr Soc. 2005;51(10):1398–403.CrossRefGoogle Scholar
  46. 46.
    Shockney L. Fulfilling hope—supporting the needs of patients with advanced cancers. New York: Nova Science Publishing; 2014.Google Scholar
  47. 47.
    Quill TE, Holloway RG. Evidence, preferences, recommendation—finding the right balance in patient care. N Engl J Med. 2012;366(18):1643–5.CrossRefGoogle Scholar
  48. 48.
    Agrawal M, Grady C, Fairclough DL, et al. Patients’ decision making process regarding participating in phase I oncology research. J Clin Oncol. 2006;24(7):4479–84.CrossRefGoogle Scholar
  49. 49.
    Audrey S, Abel J, Blazeby JM, et al. What oncologists tell patients about survival benefits of palliative chemotherapy and implementations for informed consent: qualitative study. BMJ. 2008;337:a752.CrossRefPubMedPubMedCentralGoogle Scholar
  50. 50.
    Daughtery CK, Hlubocky FJ. What are terminally ill cancer patients told about their expected deaths? A study of cancer physicians’ self- reports of prognosis disclosure. J Clin Oncol. 2008;26(36):5988–93.CrossRefGoogle Scholar
  51. 51.
    van Vliet LM, van der Wall E, Plum NM, et al. Explicit prognostic information and reassurance about nonabandonment when entering palliative breast cancer care: findings from a scripted video-vignette study. J Clin Oncol. 2013;31(26):3242–9.CrossRefPubMedPubMedCentralGoogle Scholar
  52. 52.
    Koedoot CG, De Haes JC, Heisterkamp SH, et al. Palliative chemotherapy or watchful waiting? A vignetes study among oncologists. J Clin Oncol. 2002;20(17):3658–64.CrossRefPubMedPubMedCentralGoogle Scholar
  53. 53.
    Kozminski MA, Neumann PJ, Nadler ES. How long and how well: oncologists’ attitudes toward the relative value of life-prolonging v quality of life-enhancing treatments. Med Decis Making. 2011;31(3):380–5.CrossRefPubMedPubMedCentralGoogle Scholar
  54. 54.
    Center to Advance Palliative Care. Public opinion research on palliative care: a report based on research by public opinion strategies. New York: The Center to Advance Palliative Care; 2011.Google Scholar
  55. 55.
    Casarett D, Van Ness PH, O’Leary JR, et al. Are patients preferences for life sustaining treatment really a barrier to hospice enrollment for older adults with serious illness? J Am Geriatr Soc. 2006;54(3):472–8.CrossRefPubMedPubMedCentralGoogle Scholar
  56. 56.
    McCarth EP, Burns RB, Davis RB, Phillips RS. Barriers to hospice care among older patients dying with lung and colorectal cancer. J Clin Oncol. 2003;21(4):728–35.CrossRefGoogle Scholar
  57. 57.
    Mintzer DM, Zagrabbe K. On how increasing numbers of newer cancer therapies further delay referral to hospice: the increasing palliative care imperative. Am J Hosp Palliat Care. 2007;24(2):126–30.CrossRefPubMedPubMedCentralGoogle Scholar
  58. 58.
    Smith TJ, Temin S, Alesi ER, et al. American Society of Clinical Oncology provisional clinical opinion: the integration of palliative care into standard oncology care. J Clin Oncol. 2012;30(8):880–7.CrossRefPubMedPubMedCentralGoogle Scholar
  59. 59.
    Steinhauser KE, Clipp EC, McNeilly M, Christakis NA, et al. In search of a good death: observations of patients, families and providers. Ann Intern Med. 2000;132(10):825–32.CrossRefPubMedPubMedCentralGoogle Scholar
  60. 60.
    Flaherty D. Between living well and dying well: existential ambivalence and keeping promises alive. Death Stud. 2017:1–8.  https://doi.org/10.1080/07481187.2017.1396643.

Copyright information

© Springer International Publishing AG, part of Springer Nature 2018

Authors and Affiliations

  1. 1.Johns Hopkins University School of MedicineBaltimoreUSA

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