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The Impact of Terminal Illness on the Family

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A Guide to Psychosocial and Spiritual Care at the End of Life

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Abstract

When a patient becomes terminal, his or her care assumes a kind of regularity. Almost no new diagnostic questions arise. Additional history, physical examination, and laboratory tests contribute little. And changes in treatment are rare. Nursing care predominates over medical care. Yet this sad phase affects more than just the patient; it also affects close family members. They face their own emotional traumas prompted by the patient’s decline toward death. As his or her care becomes largely set, the attention of health professionals (HPs) turns more and more to the family and the effect of the patient’s impending death on them.

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References

  1. Kirchhoff KT, Walker L, Hutton A, et al. The vortex: families’ experiences with death in the intensive care unit. Am J Crit Care. 2002;11(3):200–9.

    PubMed  Google Scholar 

  2. Heyland DK, Rocker GM, O’Callaghan CJ, Dodek PM, Cook DJ. Dying in the ICU: perspectives of family members. Chest. 2003;124(1):392–7.

    Article  PubMed  Google Scholar 

  3. Griffin JM, Meis LA, MacDonald R, et al. Effectiveness of family and caregiver interventions on patient outcomes in adults with cancer: a systematic review. J Gen Intern Med. 2014;29(9):1274–82.

    Article  PubMed  PubMed Central  Google Scholar 

  4. Kleinpiel RM, Powers MJ. Needs of family members of intensive care unit patients. Appl Nurs Res. 1992;5(1):2–8.

    Article  Google Scholar 

  5. Brody EM. “Women in the middle” and family help to older people. Gerontologist. 1981;21(5):471–80.

    Article  CAS  PubMed  Google Scholar 

  6. McCorkle R, Pasacreta JV. Enhancing caregiver outcomes in palliative care. Cancer Control. 2001;8(1):36–45.

    CAS  PubMed  Google Scholar 

  7. Covinsky KE, Goldman L, Cook EF, et al. The impact of serious illness on patients’ families. JAMA. 1994;272(23):1839–44.

    Article  CAS  PubMed  Google Scholar 

  8. Davidson JE, Powers K, Hedayat KM, et al. Clinical practice guidelines for support of the family in the patient-centered intensive care unit: American college of critical care medicine task force 2004–2005. Crit Care Med. 2007;35(2):605–22.

    Article  PubMed  Google Scholar 

  9. Schulz R, Newsom JT, Fleissner K, DeCamp AR, Nieboer AP. The effects of bereavement after family caregiving. Aging & Mental Health. 1997;1(3):269–82.

    Article  Google Scholar 

  10. Hanson LC, Danis M, Garrett J. What is wrong with end-of-life care? Opinions of bereaved family members. J Am Geriatr Soc. 1997;45(11):1339–47.

    Article  CAS  PubMed  Google Scholar 

  11. Nijboer C, Triemstra M, Tempelaar R, et al. Patterns of caregiver experiences among partners of cancer patients. Gerontologist. 2000;40(6):738–46.

    Article  CAS  PubMed  Google Scholar 

  12. Clipp EC, George LK. Dementia and cancer: a comparison of spouse caregivers. Gerontologist. 1993;33(4):534–41.

    Article  CAS  PubMed  Google Scholar 

  13. Hurley AC, Volicer L. Alzheimer disease: “It’s okay, Mama, if you want to go. It’s okay”. JAMA. 2002;288(18):2324–31.

    Article  PubMed  Google Scholar 

  14. Lawton MP, Moss M, Glicksman A. The quality of the last year of life of older persons. Milbank Q. 1990;68(1):1–28.

    Article  CAS  PubMed  Google Scholar 

  15. Morris JN, Suissa S, Sherwood S, Wright SM, Greer D. Last days: a study of the quality of life of terminally ill cancer patients. J Chron Dis. 1986;39(1):47–62.

    Article  CAS  PubMed  Google Scholar 

  16. Hebert RS, Schultz R. Caregiving at the end of life. J Palliat Med. 2006;9(5):1174–87.

    Article  PubMed  Google Scholar 

  17. Grande GE, Todd CJ, Barclay SIG. Support needs in the last year of life: patient and carer dilemmas. Palliat Med. 1997;11(3):202–8.

    Article  CAS  PubMed  Google Scholar 

  18. Weitzner MA. The family caregiver of the older cancer patient. Hematol Oncol Clin North Am. 2000;14(1):269–81.

    Article  CAS  PubMed  Google Scholar 

  19. McCusker J. The terminal period of cancer: definition and descriptive epidemiology. J Chron Dis. 1984;37(5):377–85.

    Article  CAS  PubMed  Google Scholar 

  20. Young HY, Myung KL, Seon YK. Impact of awareness of terminal illness and use of palliative care on the survival of terminally ill patients with cancer: a prospective cohort study. J Clin Onc. 2011;29(18):2474–80.

    Article  Google Scholar 

  21. Christakis NA, Escarce JJ. Survival of Medicare patients after enrollment in hospice programs. N Engl J Med. 1996;355(3):172.

    Article  Google Scholar 

  22. von Gunten CF, Ferris FD, Emanuel LL. The patient-physician relationship. Ensuring competency in end-of-life care: communication and relational skills. JAMA. 2000;284(23):3051–7.

    Article  Google Scholar 

  23. Ferrell BR, Borneman T. Pain and suffering at the end of life for older patients and their families. Generations. 1999;23(1):12–7.

    Google Scholar 

  24. Schulz DS, Carnevale FA. Engagement and suffering in responsible caregiving: on overcoming maleficence in health care. Theor Med. 1996;17(3):189–207.

    Article  Google Scholar 

  25. Vos MS, Putter H, van Houwelingen HC, de Haes HCJM. Denial and social and emotional outcomes in lung cancer patients: the protective effect of denial. Lung Cancer. 2011;72(1):119–24.

    Article  PubMed  Google Scholar 

  26. Rabinowitz T, Peirson R. “Nothing is wrong, doctor”: understanding and managing denial in patients with cancer. Cancer Invest. 2006;24(1):68–76.

    Article  PubMed  Google Scholar 

  27. Dawson NJ. Need satisfaction in terminal care settings. Soc Sci Med. 1991;2(1):83–7.

    Article  Google Scholar 

  28. Kane RL, Klein SJ, Bernstein L, Rothenberg R, Wales J. Hospice role in alleviating the emotional stress of terminal patients and their families. Med Care. 1985;23(3):189–97.

    Article  CAS  PubMed  Google Scholar 

  29. Tomasic V. The outsider. Hast Cen Rep. 2012;42(1):24–6.

    Article  Google Scholar 

  30. Williams N, DeBattista C. Psychiatric disorders. In: Papadakis MA, McPhee SJ, Rabow MW. Current medical diagnosis & treatment 2016. New York: McGraw-Hill Education; 2016. p. 1078.

    Google Scholar 

  31. Rose M. Prescription opioids: risk management and strategies for safe use. Continuing Med Educ Calif Phys Phys Assistants. 2015;140(3):56–60.

    Google Scholar 

  32. Pace CA, Samet JH. In the clinic: substance abuse disorders. Ann Intern Med. 2016;164(7):ITC50-1.

    Google Scholar 

  33. Rabow MW, Pantilat SZ. Palliative care & pain management. In: Papadakis MA, McPhee SJ, Rabow MW. Current medical diagnosis & treatment 2016. New York: McGraw-Hill Education; 2016. p. 72.

    Google Scholar 

  34. Tilden VP, Tolle SW, Garland MJ, Nelson CA. Decisions about life-sustaining treatment: impact of physicians’ behavior on the family. Arch Intern Med. 1995;155(6):633–8.

    Article  CAS  PubMed  Google Scholar 

  35. Diwan S, Houghham GW, Sachs GA. Strain experienced by caregivers of dementia patients receiving palliative care: findings from the Palliative Excellence in Alzheimer Care Efforts (PEACE) program. J Palliat Med. 2004;7(6):797–807.

    Article  PubMed  Google Scholar 

  36. Quayhagen MP, Quayhagen M. Alzheimer’s stress: coping with the caregiver role. Gerontologist. 1988;28(3):391–6.

    Article  CAS  PubMed  Google Scholar 

  37. Pochard F, Azoulay E, Chevret S, et al. Symptoms of anxiety and depression in family members of intensive care unit patients: ethical hypothesis regarding decision-making capacity. Crit Care Med. 2001;29(10):1893–7.

    Article  CAS  PubMed  Google Scholar 

  38. Azoulay E, Kentish-Barnes N, Chevret S, et al. Risk of post-traumatic stress symptoms in family members of intensive care unit patients. Am J Respir Crit Care Med. 2005;171(nn):987–94.

    Google Scholar 

  39. Lautrette A, Darmon M, Megarbane B, et al. A communication strategy and brochure for relatives of patients dying in the ICU. N Engl J Med. 2007;356(5):469–78.

    Article  CAS  PubMed  Google Scholar 

  40. Haley WE, Roth DL, Coleton MI, et al. Appraisal, coping, and social support as mediators of well-being in Black and White family caregivers of patients with Alzheimer’s disease. J Consult Clin Psychol. 1996;64(1):121–9.

    Article  CAS  PubMed  Google Scholar 

  41. Hinds C. The needs of families who care for patients with cancer at home: are we meeting them? J Adv Nurs. 1985;10(nn):575–81.

    Google Scholar 

  42. Tulsky JA. Interventions to enhance communication among patients, providers, and families. J Palliat Med. 2005;8(suppl 1):S95–102.

    PubMed  Google Scholar 

  43. Newton M, Bell D, Lambert S, Fearing A. Concerns of hospice patient caregivers. ABNF J. 2002;13(6):140–4.

    PubMed  Google Scholar 

  44. Teno JM, Casarett D, Spence C, Connor S. It is “too late” or is it? Bereaved family member perceptions of hospice referral when their family member was on hospice for seven days or less. J Pain Symptom Manage. 2012;43(4):732–8.

    Article  PubMed  Google Scholar 

  45. Carline JD, Curtis R, Wenrich MD, et al. Physicians’ interactions with health care teams and systems in the care of dying patients: perspectives of dying patients, family members, and health care professionals. J Pain Symptom Manage. 2003;25(1):19–28.

    Article  PubMed  Google Scholar 

  46. Chambers-Evans J, Carnevale FA. Dawning of awareness: the experience of surrogate decision-making at the end of life. J Clin Ethics. 2005;16(1):28–45.

    PubMed  Google Scholar 

  47. Meeker MA. Family surrogate decision making at the end of life: seeing them through with care and respect. Qual Health Res. 2004;14(2):204–25.

    Article  PubMed  Google Scholar 

  48. Abbott KH, Sago JG, Breen CM, Abernathy AP, Tulsky JA. Families looking back: one year after discussion of withdrawal or withholding of life-sustaining support. Crit Care Med. 2001;29(1):197–201.

    Article  CAS  PubMed  Google Scholar 

  49. Radwany S, Albanese T, Clough L, et al. End-of-life decision making and emotional burden: placing family meetings in context. Am J Hospice Palliat Med. 2009;26(5):376–83.

    Article  Google Scholar 

  50. Drane JF. Becoming a good doctor: the place of virtue and character in medical ethics. Kansas City MO: Sheed & Ward; 1995.

    Google Scholar 

  51. Schenker Y, Crowley-Matoka M, Dohan D, et al. I don’t want to be the one saying, “We should just let him die”: intrapersonal tensions experienced by surrogate decision makers in the ICU. J Gen Intern Med. 2012;27(12):1657–65.

    Article  PubMed  PubMed Central  Google Scholar 

  52. Torke AM, Alexander GC, Lantos J, Siegler M. The physician-surrogate relationship. Arch Intern Med. 2007;167(11):1117–21.

    Article  PubMed  Google Scholar 

  53. Perkins HS. Treating both dimensions of the body. Commentary on “providing guidance to patients: physicians’ views about the relative responsibility of doctors and religious communities”. South Med J. 2013;106(7):407–8.

    Article  PubMed  Google Scholar 

  54. Wendler D, Rid A. Systematic review: the effect on surrogates of making treatment decisions for others. Ann Intern Med. 2011;154(5):1336–46.

    Article  Google Scholar 

  55. McDonagh JR, Elliott TB, Engelberg RA, et al. Family satisfaction with family conferences about end-of-life care in the intensive care unit: increased proportion of family speech is associated with increased satisfaction. Crit Care Med. 2004;32(7):1484–8.

    Article  PubMed  Google Scholar 

  56. Curtis JR, Patrick DL, Shannon SE, et al. The family conference as a focus to improve communication about end-of-life care in the intensive care unit: opportunities for improvement. Crit Care Med. 2001;29(2):N26–33.

    Article  CAS  PubMed  Google Scholar 

  57. Azoulay E, Soares M, Darmon M, et al. Intensive care of the cancer patient. Ann Intensive Care. 2011;1(nn):5.

    Google Scholar 

  58. Andrejak C, Terzi N, Thielen S, et al. Admission of advanced lung cancer patients to intensive care unit: a retrospective study of 76 patients. BMC Cancer. 2011;11(1):159.

    Article  PubMed  PubMed Central  Google Scholar 

  59. Scheuneman LP, McDevitt M, Carson SS, Hanson LC. Randomized, controlled trials of interventions to improve communication in intensive care: a systematic review. Chest. 2011;139(3):543–5.

    Article  Google Scholar 

  60. Emanuel EJ, Fairclough DL, Slutsman J, Emanuel LL. Understanding economic and other burdens of terminal illness: the experience of patients and their caregivers. Ann Intern Med. 2000;132(6):451–9.

    Article  CAS  PubMed  Google Scholar 

  61. Rothchild E. Family dynamics in end-of-life treatment decisions. Gen Hosp Psychiatry. 1994;16(4):251–8.

    Article  CAS  PubMed  Google Scholar 

  62. Selph RB, Shiang J, Engelberg R, Curtis JR, White DB. Empathy and life support decisions in intensive care units. J Gen Intern Med. 2008;23(9):1311–7.

    Article  PubMed  PubMed Central  Google Scholar 

  63. The SUPPORT investigators. A controlled trial to improve care for seriously ill hospitalized patients: The study to understand prognoses and preferences for outcomes and risks of treatment. JAMA. 1995;274(20):1591–8.

    Article  Google Scholar 

  64. Field MJ, Cassel CK, eds., for the Committee on Care at the End of Life, Institute of Medicine. Approaching death: improving care at the end of life. Washington, D.C.: National Academy Press; 1997.

    Google Scholar 

  65. McPhee SJ, Rabow MW, Pantilat SZ. Perspectives on care at the close of life. JAMA, various issues, 2000–8.

    Google Scholar 

  66. Improving end of life care: Why has it been so difficult? Special Report. Hast Cen Rep. 2005;35(6).

    Google Scholar 

  67. Baker R, Wu AW, Teno JM, et al. Family satisfaction with end-of-life care in seriously ill hospitalized adults. J Am Geriatr Soc. 2000;48(5):S61–9.

    Article  CAS  PubMed  Google Scholar 

  68. Malcrida R, Bettelini CM, Degrate A, et al. Reasons for dissatisfaction: a survey of relatives of intensive care patients who died. Crit Care Med. 1998;26(7):1187–93.

    Article  Google Scholar 

  69. White DB, Malvar G, Karr J, Lo B, Curtis JR. Expanding the paradigm of the physician’s role in surrogate decision-making: an empirically derived framework. Crit Care Med. 2010;38(3):743–50.

    Article  PubMed  PubMed Central  Google Scholar 

  70. Braun UK, Beyth RJ, Ford ME, McCullough LB. Voices of African American, Caucasian, and Hispanic surrogates on the burdens of end-of-life decision making. J Gen Intern Med. 2008;23(3):267–74.

    Article  PubMed  PubMed Central  Google Scholar 

  71. Hayes CM. Surrogate decision-making to end life-sustaining treatments for incapacitated adults. J Hospice Palliat Nurs. 2003;5(2):91–102.

    Article  Google Scholar 

  72. Apatira L, Boyd EA, Malvar G, et al. Hope, truth, and preparing for death: perspectives of surrogate decision makers. Ann Intern Med. 2008;149(12):861–8.

    Article  PubMed  PubMed Central  Google Scholar 

  73. Vig EK, Starks H, Taylor JS, Hopley EK, Fryer-Edwards K. Surviving surrogate decision-making: What helps and hampers the experience of making medical decisions for others. J Gen Intern Med. 2007;22(9):1274–9.

    Article  PubMed  PubMed Central  Google Scholar 

  74. Limerick MH. The process used by surrogate decision makers to withhold or withdraw life-sustaining measures in an intensive care environment. Oncol Nurs Forum. 2007;34(2):331–9.

    Article  PubMed  Google Scholar 

  75. Maguire P, Pitceathly C. Improving the psychological care of cancer patients and their relatives: the role of specialist nurses. J Psychosom Res. 2003;55(5):469–74.

    Article  PubMed  Google Scholar 

  76. Haley WE, LaMonde LA, Han B, Burtan AM, Schonwetter R. Predictors of depression and life satisfaction among spousal caregivers in hospice: application of a stress process model. J Palliat Med. 2003;6(2):215–24.

    Article  PubMed  Google Scholar 

  77. Wiegand D. In their own time: the family experience during the process of withdrawal of life-sustaining therapy. J Palliat Med. 2008;11(8):1115–21.

    Article  PubMed  PubMed Central  Google Scholar 

  78. Heyland DK, Rocker GM, O’Callaghan CJ, Dodek PM, Cook DJ. Dying in the ICU: perspectives of family members. Chest. 2003;124(1):392–7.

    Article  PubMed  Google Scholar 

  79. Tolstoi L. Anna Karenina. (Constance Garnett, trans.) New York: The Modern Library Classics; 2000. p. 3.

    Google Scholar 

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  1. Ecumenical Center for Religion and Health, The University of Texas Health Science Center, San Antonio, Texas, USA

    Henry S. Perkins

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Perkins, H.S. (2016). The Impact of Terminal Illness on the Family. In: A Guide to Psychosocial and Spiritual Care at the End of Life. Springer, New York, NY. https://doi.org/10.1007/978-1-4939-6804-6_8

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