Skip to main content
SpringerLink
Log in
Book cover

Quality Cancer Care pp 243–268Cite as

End-of-Life Care and Cancer: Psychosocial Needs of Patients and the Bereaved

  • Chapter
  • First Online:

Abstract

End-of-life (EOL) care is an essential component of cancer care for patients, their caregivers, and families. This chapter approaches EOL care from a psychosocial perspective, providing an overview of EOL care needs, followed by a description of assessment and intervention strategies, with particular focus on legacy-building and meaning-making. It also describes assessment and intervention approaches for individuals bereaved by cancer. While the focus of the chapter is primarily on care of adults, the unique support needs of parents and their children at EOL and during bereavement are also discussed. The chapter concludes with reflections on the state of EOL and bereavement care and recommendations for improving services.

This is a preview of subscription content, log in via an institution.

Chapter
USD   29.95
Price excludes VAT (USA)
  • Available as PDF
  • Read on any device
  • Instant download
  • Own it forever
eBook
USD   89.00
Price excludes VAT (USA)
  • Available as EPUB and PDF
  • Read on any device
  • Instant download
  • Own it forever
Softcover Book
USD   119.99
Price excludes VAT (USA)
  • Compact, lightweight edition
  • Dispatched in 3 to 5 business days
  • Free shipping worldwide - see info

Tax calculation will be finalised at checkout

Purchases are for personal use only

Learn about institutional subscriptions

References

  1. Institute of Medicine. Committee on care at the end of life, Division of Health Care Services. In: Field MJ, Cassel CK, editors. Dying in America: improving quality and honoring individual preferences near the end of life. Washington D.C.: National Academy Press; 2014.

    Google Scholar 

  2. National Cancer Institute. End-of-Life Care. National Cancer Institute; 2012.

    Google Scholar 

  3. National Hospice and Palliative Care Organization. NHPCO’s Facts and Figures, Hospice care in America; 2015.

    Google Scholar 

  4. Qaseem A, Snow V, Shekelle P, Casey DE, Cross T, Owens DK. Evidence-based interventions to improve the palliative care of pain, dyspnea, and depression at the end of life: a clinical practice guidelines from the American College of Physicians. Ann Intern Med. 2008;148:141–6.

    Article  PubMed  Google Scholar 

  5. Steinhauser K, Christakis N, Clipp E, McNeilly M, McIntyre L, Tulsky J. Factors considered important at the end of life by patients, family, physicians, and other care providers. JAMA. 2000;284(19):2476–82.

    Article  PubMed  CAS  Google Scholar 

  6. Meier EA, Gallegos JV, Thomas LP, Depp CA, Irwin SA, Jeste DV. Defining a good death (successful dying): literature review and a call for research and public dialogue. Am J Geriatr Psychiatry. 2016;24(4):261–71.

    Article  PubMed  PubMed Central  Google Scholar 

  7. Block S. Psychological considerations, growth, and transcendence at the end of life: the art of the possible. JAMA. 2001;285(22):2898–905.

    Article  PubMed  CAS  Google Scholar 

  8. Chochinov HM. Dignity-conserving care—a new model for palliative care: helping the patient feel valued. JAMA. 2002;287(17):2253–60.

    Article  PubMed  Google Scholar 

  9. De Jong JD, Clarke LE. What is a good death? Stories from palliative care. J Palliat Care. 2009;25(1):61–7.

    PubMed  Google Scholar 

  10. Becker E. The denial of death. New York: Free Press; 1973.

    Google Scholar 

  11. Neimeyer R, Fortner B. Death attitudes in contemporary perspective. In: Strack S, editor. Death and the quest for meaning: essays in honor of Herman Feifel. New Jersey: Jason Aronson Inc.; 1997.

    Google Scholar 

  12. Hui D, Kim SH, Kwon JH, Tanco KC, Zhang T, Kang JH, et al. Access to palliative care among patients treated at a comprehensive cancer center. Oncologist. 2012;1(17):1574–80.

    Article  Google Scholar 

  13. McPhee SJ, Rabow MW, Pantilat SZ, Markowitz AJ, Winker MA. Finding our way—perspectives on care at the close of life. JAMA. 2000;284:2512–3.

    Article  PubMed  CAS  Google Scholar 

  14. Clark K. Care at the very end-of-life: dying cancer patients and their chosen family’s needs. Cancers. 2017;9(2):11.

    Article  PubMed Central  Google Scholar 

  15. Heyland D, Dodek P, Rocker G, Groll D, Gafni A, Pichora D, et al. What matters most in end-of-life care: perceptions of seriously ill patients and their family members. CMAJ. 2006;174(5):627–33.

    Article  PubMed  PubMed Central  Google Scholar 

  16. Lo Presti M, Dement F, Gold H. End-of-life care for people with cancer from ethnic minority groups: a systematic review. Am J Hosp Palliat Care. 2016;33(3):291–305.

    Article  Google Scholar 

  17. Lopez-Sierra HE, Rodriguez-Sanchez J. The supportive roles of religion and spirituality in end-of-life and palliative care of patients with cancer in a culturally diverse context: a literature review. Curr Opin Support Palliat Care. 2015;9(1):87–95.

    Article  PubMed  Google Scholar 

  18. Maciasz RM, Arnold RM, Chu E, Park Y, White DB, Vater LB, et al. Does it matter what you call it? A randomized trial of language used to describe palliative care services. Support Care Cancer. 2013;21(12):3411–9.

    Article  PubMed  CAS  Google Scholar 

  19. Smith T, Temin S, Alesi E, Abernethy A, Balboni T, Basch E, et al. American Society of Clinical Oncology provisional clinical opinion: the integration of palliative care into standard oncology care. J Clin Oncol. 2012;6(30):880–7.

    Article  Google Scholar 

  20. Gomes B, Calanzani N, Koffman J, Higginson I. Is dying in hospital better than home in incurable cancer and what factors influence this? A population-based study. BMC Med. 2015;13(1):235.

    Article  PubMed  PubMed Central  CAS  Google Scholar 

  21. Higgins PC, Garrido MM, Prigerson HG. Factors predicting bereaved caregiver perception of quality of care in the final week of life: implications for health care providers. J Palliat Med. 2015;18(10):849–57.

    Article  PubMed  PubMed Central  Google Scholar 

  22. Hales S, Chiu A, Husain A, Braun M, Rydall A, Gagliese L, et al. The quality of dying and death in cancer and its relationship to palliative care and place of death. J Pain Symptom Manag. 2014;48(5):839–51.

    Article  Google Scholar 

  23. Agar M, Currow D, Shelby-James T, Plummer J, Sanderson C, AP A. Preference for place of care and place of death in palliative care: are these different questions? Palliat Med. 2008;22(7):787–95.

    Article  PubMed  CAS  Google Scholar 

  24. Grunier A, Mor V, Weitzen S, Truchil R, Teno J, Roy J. Where people die: a multilevel approach to understanding influences on site of death in America. Med Care Res Rev. 2007;64(4):351–78.

    Article  Google Scholar 

  25. Burge F, Lawson B, Johnston G, Asada Y, McIntyre PF, Grunfeld E, et al. Bereaved family member perceptions of patient-focused family-centred care during the last 30 days of life using a mortality follow-back survey: does location matter? BMC Palliat Care. 2014;13:25.

    Article  PubMed  PubMed Central  Google Scholar 

  26. Breitbart W, Alici Y. Psychosocial palliative care. Oxford: Oxford University Press; 2014.

    Book  Google Scholar 

  27. Prigerson H, Vaughan S, Lichtenthal W. The hidden dangers of a cancer diagnosis. BMJ. 2016;354:4446.

    Article  Google Scholar 

  28. Singer P, Martin D, Kelner M. Quality end-of-life care: patients’ perspectives. JAMA. 1999;281(2):163–8.

    Article  PubMed  CAS  Google Scholar 

  29. Corr C, Corr D. Culture, socialization and dying. In: Meagher D, Balk D, editors. Handbook of thanatology: the essential body of knowledge of death, dying and bereavement. New York: Routledge; 2013.

    Google Scholar 

  30. Neimeyer R. From death anxiety to meaning making at the end of life: recommendations for psychological assessment. Clin Psychol Sci Pract. 2005;12:354–7.

    Article  Google Scholar 

  31. Kubler-Ross E. On death and dying. New York: Scribner; 1969.

    Google Scholar 

  32. Corr C. A task-based approach to coping with dying. Omega. 1992;24:81–92.

    Article  Google Scholar 

  33. Doka K. Living with life-threatening illness: a guide for patients, families, and caregivers. Lexington, MA: Lexington Books; 1993.

    Google Scholar 

  34. Passik S, Dugan W, McDonald M, Rosenfeld B, Theobald D, Edgerton S. Oncologists’ recognition of depression in their patients with cancer. J Clin Oncol. 1998;16(4):1594–600.

    Article  PubMed  CAS  Google Scholar 

  35. Kroenke K, Spitzer R, Williams J. The PHQ-9: validity of a brief depression severity measure. J Gen Intern Med. 2001;16(9):606–13.

    Article  PubMed  PubMed Central  CAS  Google Scholar 

  36. Gibson C, Breitbart W, Tomarken A, Kosinski A, Nelson C. Mental health issues near the end of life. In: Werth J, Blevins D, editors. Psychosocial issues near the end of life: a resource for professional care providers. Washington DC: American Psychological Association; 2006. p. 137–62.

    Chapter  Google Scholar 

  37. Lichtenthal WG, Nilsson M, Zhang B, Trice ED, Kissane DW, Breitbart W, et al. Do rates of mental disorders and existential distress among advanced stage cancer patients increase as death approaches? Psychooncology. 2009;18(1):50–61.

    Article  PubMed  PubMed Central  Google Scholar 

  38. Strain J, Liebowitz M, Klein D. Anxiety and panic attacks in the medically ill. Psychiatr Clin N Am. 1981;4(2):333–50.

    Article  CAS  Google Scholar 

  39. Miovic M, Block S. Psychiatric disorders in advanced cancer. Cancer. 2007;110(8):1665–76.

    Article  PubMed  Google Scholar 

  40. Bush S, Bruera E. The assessment and management of delirium in cancer patients. Oncologist. 2009;14:1039–49.

    Article  PubMed  Google Scholar 

  41. Centeno C, Sanz A, Bruera E. Delirium in advanced cancer patients. Palliat Med. 2004;18:184–94.

    Article  PubMed  Google Scholar 

  42. Breitbart W, Gibson C, Tremblay A. The delirium experience: delirium recall and delirium-related distress in hospitalized patients with cancer, their spouses/caregivers, and their nurses. Psychosomatics. 2002;43:183–94.

    Article  PubMed  Google Scholar 

  43. Meagher D. Delirium: optimising management. Br Med J. 2001;322:144–9.

    Article  CAS  Google Scholar 

  44. Breitbart W, Rosenfeld B, Pessin H, Kaim M, Funesti-Esch J, Galietta M, et al. Depression, hopelessness, and desire for hastened death in terminally ill patients with cancer. JAMA. 2000;284(22):2907–11.

    Article  PubMed  CAS  Google Scholar 

  45. Robinson S, Kissane DW, Brooker J, Burney S. A review of the construct of demoralization: history, definitions, and future directions for palliative care. Am J Hosp Palliat Care. 2016;33(1):93–101.

    Article  PubMed  Google Scholar 

  46. Chochinov H, Wilson K, Enns M, Lander S. Depression, hopelessness, and suicidal ideation in the terminally ill. Psychosomatics. 1998;39(4):366–70.

    Article  PubMed  CAS  Google Scholar 

  47. Holland J. Anxiety and cancer: the patient and the family. J Clin Psychiatry. 1989;50:20–5.

    PubMed  Google Scholar 

  48. Alici Y, Smith D, Lu H, Bailey A, Shreve S, Rosenfeld K, et al. Families’ perceptions of veterans’ distress due to post-traumatic stress disorder-related symptoms at the end of life. J Pain Symptom Manag. 2010;39(3):507–14.

    Article  Google Scholar 

  49. Feldman D, Sorocco K, Bratkovich K. Treatment of post traumatic stress disorder at the end-of-life: application of the stepwise psychosocial palliative care model. Palliat Support Care. 2014;12(3):233–43.

    Article  PubMed  Google Scholar 

  50. Connor S, Lycan J, Schumacher D. Involvement of psychologists in psychosocial aspects of hospice and end-of-life care. In: Werth J, Blevins D, editors. Psychosocial issues near the end of life: a resource for professional care givers. Washington DC: American Psychological Association; 2006. p. 203–17.

    Chapter  Google Scholar 

  51. Levin T, Applebaum A. Acute cancer cognitive therapy. Cogn Behav Pract. 2014;21(4):404–15.

    Article  Google Scholar 

  52. Coyle N. The hard work of living in the face of death. J Pain Symptom Manag. 2006;32(3):266–74.

    Article  Google Scholar 

  53. Breitbart W. The existential framework of meaning-centered psychotherapy. In: Breitbart W, editors. New York: Oxford; 2017.

    Book  Google Scholar 

  54. Keall R, Clayton J, Butow P. Therapeutic life review in palliative care: a systematic review of quantitative evaluations. J Pain Symptom Manag. 2015;49(4):747–61.

    Article  Google Scholar 

  55. Chochinov H, Hack T, Hassard T, Kristjanson L, McClement S, Harlos M. Dignity therapy: a novel psychotherapeutic intervention for patients near end of life. J Clin Oncol. 2005;23(24):5520–5.

    Article  PubMed  Google Scholar 

  56. Frankl VE. Man’s search for meaning : the classic tribute to hope from the Holocaust: Rider; 2011.

    Google Scholar 

  57. Breitbart W, Rosenfeld B, Pessin H, Applebaum A, Kulikowski J, Lichtenthal W. Meaning-centered group psychotherapy: an effective intervention for improving psychological well-being in patients with advanced cancer. Palliat Support Care. 2015;33(7):749–54.

    Google Scholar 

  58. Breitbart W, Poppito S, Rosenfeld B, Vickers A, Li Y, Abbey J, et al. Pilot randomized controlled trial of individual meaning-centered psychotherapy for patients with advanced cancer. J Clin Oncol. 2012;30(12):1304–9.

    Article  PubMed  PubMed Central  Google Scholar 

  59. Masterson M, Rosenfeld B, Pessin H, Fenn N. Adapting meaning-centered psychotherapy in the palliative care setting: meaning-centered psychotherapy-palliative care. In: Breitbart W, editor. Meaning-centered psychotherapy in the cancer setting: finding hope and meaning in the face of suffering. New York: Oxford; 2017.

    Chapter  Google Scholar 

  60. Breitbart W, editor. Meaning-centered psychotherapy in the cancer setting New York. New York: Oxford University Press; 2017.

    Google Scholar 

  61. Garcia C, Lynn R, Breitbart W. Psychotropic medications in palliative care. Prim Psychiatry. 2009;16(5):25–32.

    Google Scholar 

  62. O’Mahony D, O’Connor MN. Pharmacotherapy at end of life. Age Aging. 2011;40(4):419–22.

    Article  Google Scholar 

  63. Grassi L, Riba M. Psychopharmacology in oncology and palliative care: a practical manual. Berlin: Springer; 2014.

    Book  Google Scholar 

  64. Thekdi SM, Trinidad A, Roth A. Psychopharamacology in cancer. Curr Psychiatry Rep. 2015;17(1):529.

    Article  PubMed  Google Scholar 

  65. Delgado-Guay MO. Spirituality and religiosity in supportive and palliative care. Curr Opin Support Palliat Care. 2014;8(3):308–13.

    Article  PubMed  Google Scholar 

  66. Sulmasy D. A biopsychosocial-spiritual model for the care of patients at the end of life. Gerontology. 2002;42(suppl 3):24–33.

    Google Scholar 

  67. King M, Llewellyn H, Leurent B, Owen F, Leavey G, Tookman A, et al. Spiritual beliefs near the end of life: a prospective cohort study of people with cancer receiving palliative care. Psychooncology. 2013;22(11):2505–12.

    Article  PubMed  PubMed Central  Google Scholar 

  68. Kapari M, Addington J, Hotopf M. Risk factors for common mental disorder in caregiving and bereavement. J Pain Symptom Manag. 2010;40(6):844–56.

    Article  Google Scholar 

  69. Lichtenthal WG, Nilsson M, Kissane DW, Breitbart W, Kacel E, Jones EC, et al. Underutilization of mental health services among bereaved caregivers with prolonged grief disorder. Psychiatr Serv. 2011;62(10):1225–9.

    Article  PubMed  PubMed Central  Google Scholar 

  70. Nielsen MK, Neergaard MA, Jensen AB, Bro F, Guldin MB. Psychological distress, health, and socio-economic factors in caregivers of terminally ill patients: a nationwide population-based cohort study. Support Care Cancer. 2016;24(7):3057–67.

    PubMed  Google Scholar 

  71. Kang J, Shin DW, Choi JE, Sanjo M, Yoon SJ, Kim HK, et al. Factors associated with positive consequences of serving as a family caregiver for a terminal cancer patient. Psychooncology. 2013;22(3):564–71.

    Article  PubMed  Google Scholar 

  72. Ratkowski KL, Washington KT, Craig KW, Albright DL. The stress of sadness: the most stressful symptoms for hospice family caregivers. Am J Hosp Palliat Care. 2015;32(7):745–9.

    Article  PubMed  Google Scholar 

  73. Kehl KA, Kowalkowski JA. A systematic review of the prevalence of signs of impending death and symptoms in the last 2 weeks of life. Am J Hosp Palliat Med. 2013;30(6):601–16.

    Article  Google Scholar 

  74. Pitceathly C, Maguire P. The psychological impact of cancer on patients’ partners and other key relatives: a review. Eur J Cancer. 2003;39(11):1517–24.

    Article  PubMed  CAS  Google Scholar 

  75. Wijnhoven MN, Terpstra WE, van Rossem R, Haazer C, Gunnink-Boonstra N, Sonke GS, et al. Bereaved relatives’ experiences during the incurable phase of cancer: a qualitative interview study. BMJ Open. 2015;5(11):e009009.

    Article  PubMed  PubMed Central  Google Scholar 

  76. Hudson P, Remedios C, Zordan R, Thomas K, Clifton D, Crewdson M, et al. Guidelines for the psychosocial and bereavement support of family caregivers of palliative care patients. J Palliat Med. 2012;15(6):696–702.

    Article  PubMed  PubMed Central  Google Scholar 

  77. Hudson P, Trauer T, Kelly B, O’Connor M, Thomas K, Zordan R, et al. Reducing the psychological distress of family caregivers of home based palliative care patients: longer term effects from a randomised controlled trial. Psychooncology. 2015;24(1):19–24.

    Article  PubMed  Google Scholar 

  78. Yamamoto S, Arao H, Masutani E, Aoki M, Kishino M, Morita T, et al. Decision making regarding the place of end-of-life cancer care: the burden on bereaved families and related factors. J Pain Symptom Manag. 2017;53(5):862–70.

    Article  Google Scholar 

  79. Applebaum AJ, Buda KA, Farberov M, Teitelbaum ND, Evans K, Cowens-Alvarado R, et al. Care for the cancer caregiver: A web-based intervention to address caregiver burden. 14th Annual Conference of the American Psychosocial Oncology Society; Orlando, FL; 2017.

    Google Scholar 

  80. Kissane DW, McKenzie M, Bloch S, Moskowitz C, McKenzie DP, O’Neill I. Family focused grief therapy: a randomized, controlled trial in palliative care and bereavement. Am J Psychiatry. 2006;163(7):1208–18.

    Article  PubMed  Google Scholar 

  81. Garrido MM, Prigerson HG. The end-of-life experience: modifiable predictors of caregivers’ bereavement adjustment. Cancer. 2014;120(6):918–25.

    Article  PubMed  Google Scholar 

  82. Dokken DL. In their own voices: families discuss end-of-life decision making--part 1. Pediatr Nurs. 2006;32(2):173–5.

    PubMed  Google Scholar 

  83. Rogers CH, Floyd FJ, Seltzer MM, Greenberg J, Hong J. Long-term effects of the death of a child on parents’ adjustment in midlife. J Fam Psychol. 2008;22(2):203–11.

    Article  PubMed  PubMed Central  Google Scholar 

  84. Kars MC, Grypdonck MHF, van Delden JJM. Being a parent of a child with cancer throughout the end-of-life course. Oncol Nurs Forum. 2011;38(4):E260–E71.

    Article  PubMed  Google Scholar 

  85. Davies B, Connaughty S. Pediatric end-of-life care: lessons learned from parents. J Nurs Adm. 2002;32(1):5–6.

    Article  PubMed  Google Scholar 

  86. Contro N, Larson J, Scofield S, Sourkes B, Cohen H. Family perspectives on the quality of pediatric palliative care. Arch Pediatr Adolesc Med. 2002;156(1):14.

    Article  PubMed  Google Scholar 

  87. Meert KL, Eggly S, Pollack M, Anand KJS, Zimmerman J, Carcillo J, et al. Parents’ perspectives on physician-parent communication near the time of a child’s death in the pediatric intensive care unit. Pediatr Crit Care Med. 2008;9(1):2–7.

    Article  PubMed  PubMed Central  Google Scholar 

  88. Bluebond-Langner M, Belasco JB, Goldman A, Belasco C. Understanding parents’ approaches to care and treatment of children with cancer when standard therapy has failed. J Clin Oncol. 2007;25(17):2414–9.

    Article  PubMed  Google Scholar 

  89. Matsuoka M, Narama M. Parents’ thoughts and perceptions on hearing that their child has incurable cancer. J Palliat Med. 2012;15(3):340–6.

    Article  PubMed  Google Scholar 

  90. Wolfe J, Grier HE, Klar N, Levin SB, Ellenbogen JM, Salem-Schatz S, et al. Symptoms and suffering at the end of life in children with cancer. N Engl J Med. 2000;342(5):326–33.

    Article  PubMed  CAS  Google Scholar 

  91. Widger K, Picot C. Parents’ perceptions of the quality of pediatric and perinatal end-of-life care. Pediatr Nurs. 2008;34(1):53–8.

    PubMed  Google Scholar 

  92. Farrell MF, Frost C. The most important needs of parents of critically ill children: parents’ perceptions. Intensive Crit Care Nurs. 1992;8(3):130–9.

    Article  PubMed  CAS  Google Scholar 

  93. Branchett K, Stretton J. Neonatal palliative and end of life care: what parents want from professionals. J Neonatal Nurs. 2012;18(2):40–4.

    Article  Google Scholar 

  94. Rini A, Loriz L. Anticipatory mourning in parents with a child who dies while hospitalized. J Pediatr Nurs. 2007;22(4):272–82.

    Article  PubMed  Google Scholar 

  95. Zimmermann K, Cignacco E, Eskola K, Engberg S, Ramelet AS, Von der Weid N, et al. Development and initial validation of the parental PELICAN questionnaire (PaPEQu)--an instrument to assess parental experiences and needs during their child’s end-of-life care. J Adv Nurs. 2015;71(12):3006–17.

    Article  PubMed  Google Scholar 

  96. Ellis R, Leventhal B. Information needs and decision-making preferences of children with cancer. Psycho-Oncology. 1993;2(4):277–84.

    Article  Google Scholar 

  97. Beale EA, Baile WF, Aaron J. Silence is not golden: communicating with children dying from cancer. J Clin Oncol. 2005;23(15):3629–31.

    Article  PubMed  Google Scholar 

  98. Wiener L, Zadeh S, Wexler LH, Pao M. When silence is not golden: engaging adolescents and young adults in discussions around end-of-life care choices. Pediatr Blood Cancer. 2013;60(5):715–8.

    Article  PubMed  PubMed Central  Google Scholar 

  99. Kreicbergs U, Valdimarsdóttir U, Onelöv E, Henter J, Steineck G. Talking about death with children who have severe malignant disease. N Engl J Med. 2004;351(12):1175–86.

    Article  PubMed  CAS  Google Scholar 

  100. Hurwitz CA, Duncan J, Wolfe J. Caring for the child with cancer at the close of life. JAMA. 2004;292(17):2141.

    Article  PubMed  CAS  Google Scholar 

  101. Bell CJ, Skiles J, Pradhan K, Champion VL. End-of-life experiences in adolescents dying with cancer. Support Care Cancer. 2010;18(7):827–35.

    Article  PubMed  Google Scholar 

  102. Stevens MM, Jones P, O’Riordan E. Family responses when a child with cancer is in palliative care. J Palliat Care. 1996;12(3):51–5.

    PubMed  CAS  Google Scholar 

  103. Anderzén-Carlsson A, Kihlgren M, Svantesson M, Sorlie V. Parental handling of fear in children with cancer; caring in the best interests of the child. J Pediatr Nurs. 2010;25(5):317–26.

    Article  PubMed  Google Scholar 

  104. Wiener L, Ballard E, Brennan T, Battles H, Martinez P, Pao M. How i wish to be remembered: the use of an advance care planning document in adolescent and young adult populations. J Palliat Med. 2008;11(10):1309–13.

    Article  PubMed  PubMed Central  Google Scholar 

  105. Zadeh S, Pao M, Wiener L. Oening end-of-life discussions: how to introduce voicing my CHOiCES™, an advance care planning guide for adolescents and young adults. Palliat Support Care. 2015;13(03):591–9.

    Article  PubMed  Google Scholar 

  106. Wiener L, Zadeh S, Battles H, Baird K, Ballard E, Osherow J, et al. Allowing adolescents and young adults to plan their end-of-life care. Pediatrics. 2012;130(5):897–905.

    Article  PubMed  PubMed Central  Google Scholar 

  107. Dighe M, Jadhav S, Muckaden M, Sovani A. Parental concerns in children requiring palliative care. Ind J Palliat Care. 2008;14(1):16.

    Article  Google Scholar 

  108. Meyer EC, Ritholz MD, Burns JP, Truog RD. Improving the quality of end-of-life care in the pediatric intensive care unit: parents’ priorities and recommendations. Pediatrics. 2006;117(3):649–57.

    Article  PubMed  Google Scholar 

  109. Hooyman NR, Kramer BJ. Living through loss. New York: Columbia University Press; 2008. p. 452.

    Google Scholar 

  110. Michelson KN, Steinhorn DM. Pediatric end-of-life issues and palliative care. Clin Pediatr Emerg Med. 2007;8(3):212–9.

    Article  PubMed  PubMed Central  Google Scholar 

  111. Tan JS, Docherty SL, Barfield R, Brandon DH. Addressing parental bereavement support needs at the end of life for infants with complex chronic conditions. J Palliat Med. 2012;15(5):579–84.

    Article  PubMed  PubMed Central  Google Scholar 

  112. Davies B, Contro N, Larson J, Widger K. Culturally-sensitive information-sharing in pediatric palliative care. Pediatrics. 2010;125(4):e859–e65.

    Article  PubMed  Google Scholar 

  113. Lichtenthal WG, Sweeney CR, Roberts KE, Corner GW, Donovan LA, Prigerson HG, et al. Bereavement follow-up after the death of a child as a standard of care in pediatric oncology. Pediatr Blood Cancer. 2015;62(Suppl 5):S834–69.

    Article  PubMed  PubMed Central  Google Scholar 

  114. Hinds P, Oakes L, Furman W, Quargnenti A, Olson M, Foppiano P, et al. End-of-life decision making by adolescents, parents, and healthcare providers in pediatric oncology: research to evidence-based practice guidelines. Cancer Nurs. 2001;24(2):122–34.

    Article  PubMed  CAS  Google Scholar 

  115. Hendricks-Ferguson VL, Pradhan K, Shih C-S, Gauvain KM, Kane JR, Liu J, et al. Pilot evaluation of a palliative and end-of-life communication intervention for parents of children with a brain tumor. J Pediatr Oncol Nurs. 2017;34(3):203–13.

    Article  PubMed  Google Scholar 

  116. Donovan LA, Wakefield CE, Russell V, Cohn RJ. Hospital-based bereavement services following the death of a child: a mixed study review. Palliat Med. 2015;29(3):193–210.

    Article  PubMed  Google Scholar 

  117. Chan HY, Lee LH, Chan CW. The perceptions and experiences of nurses and bereaved families towards bereavement care in an oncology unit. Support Care Cancer. 2013;21(6):1551–6.

    Article  PubMed  Google Scholar 

  118. Ghesquiere A, Thomas J, Bruce M. Utilization of hospice bereavement support by at-risk family members. Am J Hosp Palliat Med. 2016;33(2):124–9.

    Article  Google Scholar 

  119. Cherlin EJ, Barry CL, Prigerson HG, Green DS, Johnson-Hrzeler R, Kasi SV, et al. Bereavement services for family caregivers: how often used, why, and why not. J Palliat Med. 2007;10:148–58.

    Article  PubMed  Google Scholar 

  120. Seamark D, Blake S, Brearley SG, Milligan C, Thomas C, Turner M, et al. Dying at home: a qualitative study of family carers’ views of support provided by GPs community staff. Br J Gen Pract. 2014;64(629):e796–803.

    Article  PubMed  PubMed Central  Google Scholar 

  121. Chau NG, Zimmermann C, Ma C, Taback N, Krzyzanowska MK. Bereavement practices of physicians in oncology and palliative care. Arch Intern Med. 2009;169(10):963–71.

    Article  PubMed  Google Scholar 

  122. Bonanno GA, Kaltman S. The varieties of grief experience. Clin Psychol Rev. 2001;21:705–34.

    Article  PubMed  CAS  Google Scholar 

  123. Aoun S, Breen LJ, Howting D, Rumbold B, McNamara B, Hegney D. Who needs bereavement support? A population based survey of bereavement risk and support need. PLoS One. 2015;10(3):e0121101.

    Article  PubMed  PubMed Central  CAS  Google Scholar 

  124. Prigerson HG, Frank E, Kasl SV, Reynolds CF 3rd, Anderson B, Zubenko GS, et al. Complicated grief and bereavement-related depression as distinct disorders: preliminary empirical validation in elderly bereaved spouses. Am J Psychiatry. 1995;152(1):22–30.

    Article  PubMed  CAS  Google Scholar 

  125. Lichtenthal WG, Prigerson HG, Kissane DW. Bereavement: a special issue in oncology. In: Holland J, editor. Psycho-oncology. 2nd ed. New York: Oxford University Press; 2010.

    Google Scholar 

  126. Barry L, Kasl S, Prigerson HG. Psychiatric disorders among bereaved persons: the role of perceived circumstances of death and preparedness for death. Am J Geriatr Psychiatry. 2002;10:447–57.

    Article  PubMed  Google Scholar 

  127. American Psychiatric Association, American Psychiatric Association. DSM-5 task force. Diagnostic and statistical manual of mental disorders, DSM-5. Washington, D.C.: Am Psychiatr Assoc; 2013. http://BN7ZQ5YK2C.search.serialssolutions.com/?V=1.0&L=BN7ZQ5YK2C&S=JCs&C=TC0000893411&T=marc&tab=BOOKS

    Book  Google Scholar 

  128. Auster T, Moutier C, Lanouette N, Zisook S. Bereavement and depression: implications for diagnosis and treatmen. Psychiatr Ann. 2008;38(10):655–61.

    Article  Google Scholar 

  129. Azoulay E, Pochard F, Kentish-Barnes N, Chevret S, Aboab J, Adrie C, et al. Risk of post-traumatic stress symptoms in family members of intensive care unit patients. Am J Resp Crit Care Med. 2005;171:987–94.

    Article  PubMed  Google Scholar 

  130. Sanderson C, Lobb EA, Mowll J, Butow PN, McGowan N, Price MA. Signs of post-traumatic stress disorder in caregivers following an expected death: a qualitative study. Palliat Med. 2013;27(7):625–31.

    Article  PubMed  Google Scholar 

  131. Zisook S, Chentsova-Dutton Y, Shuchter SR. PTSD following bereavement. Ann Clin Psychiatry. 1998;10(4):157–68.

    Article  PubMed  CAS  Google Scholar 

  132. Kristensen P, Weisaeth L, Heir T. Bereavement and mental health after sudden and violent losses: a review. Psychiatry. 2012;75(1):76–97.

    Article  PubMed  Google Scholar 

  133. Downar J, Barua R, Sinuff T. The desirability of an Intensive Care Unit (ICU) clinician-led bereavement screening and support program for family members of ICU decedents (ICU Bereave). J Crit Care. 2014;29(2):311.e9–e16.

    Article  Google Scholar 

  134. Roberts K, Holland J, Prigerson HG, Sweeney C, Corner G, Breitbart W, et al. Development of the Bereavement Risk Inventory and Screening Questionnaire (BRISQ): item generation and expert panel feedback. Palliat Support Care. 2017;15(1):57–66.

    Article  PubMed  Google Scholar 

  135. Burke LA, Neimeyer RA, editors. Prospective risk factors for complicated grief. New York: Routledge; 2012.

    Google Scholar 

  136. Lundorff M, Holmgren H, Zachariae R, Farver-Vestergaard I, O’Connor M. Prevalence of prolonged grief disorder in adult bereavement: a systematic review and meta-analysis. J Affect Disord. 2017;212:138–49.

    Article  PubMed  Google Scholar 

  137. Boelen PA. Improving the understanding and treatment of complex grief: an important issue for psychotraumatology. Eur J Psychotraumatol. 2016;7:32609.

    Article  PubMed  Google Scholar 

  138. Lai C, Luciani M, Galli F, Morelli E, Cappelluti R, Penco I, et al. Attachment style dimensions can affect prolonged grief risk in caregivers of terminally ill patients with cancer. Am J Hosp Palliat Care. 2015;32(8):855–60.

    Article  PubMed  Google Scholar 

  139. Eisma MC, Boelen PA, Schut HA, Stroebe MS. Does worry affect adjustment to bereavement? A longitudinal investigation. Anxiety Stress Coping. 2017;30(3):243–52.

    Article  PubMed  Google Scholar 

  140. Field NP, Gao B, Paderna L. Continuing bonds in bereavement: an attachment theory based perspective. Death Stud. 2005;29(4):277–99.

    Article  PubMed  Google Scholar 

  141. Elvira de la Morena MJ, Cruzado JA. Caregivers of patients with disorders of consciousness: coping and prolonged grief. Acta Neurol Scand. 2013;127(6):413–8.

    Article  PubMed  CAS  Google Scholar 

  142. Currier JM, Holland JM, Neimeyer RA. Sense-making, grief, and the experience of violent loss: toward a mediational model. Death Stud. 2006;30(5):403–28.

    Article  PubMed  Google Scholar 

  143. Abbott CH, Prigerson HG, Maciejewski PK. The influence of patients’ quality of life at the end of life on bereaved caregivers’ suicidal ideation. J Pain Symptom Manag. 2014;48(3):459–64.

    Article  Google Scholar 

  144. Lichtenthal WG, Currier JM, Neimeyer RA, Keesee NJ. Sense and significance: a mixed methods examination of meaning making after the loss of one’s child. J Clin Psychol. 2010;66(7):791–812.

    PubMed  PubMed Central  Google Scholar 

  145. Rozenzweig A, Prigerson H, Miller MD, Reynolds CF 3rd. Bereavement and late-life depression: grief and its complications in the elderly. Annu Rev Med. 1997;48:421–8.

    Article  PubMed  CAS  Google Scholar 

  146. Kelly B, Edwards P, Synott R, Neil C, Baillie R, Battistutta D. Predictors of bereavement outcome for family carers of cancer patients. Psychooncology. 1999;8(3):237–49.

    Article  PubMed  CAS  Google Scholar 

  147. Bowlby J. Attachment and loss: retrospect and prospect. Am J Orthopsychiatry. 1982;52(4):664–78.

    Article  PubMed  Google Scholar 

  148. Johnson JG, Zhang B, Greer JA, Prigerson HG. Parental control, partner dependency, and complicated grief among widowed adults in the community. J Nerv Ment Dis. 2007;195(1):26–30.

    Article  PubMed  Google Scholar 

  149. van Doorn C, Kasl SV, Beery LC, Jacobs SC, Prigerson HG. The influence of marital quality and attachment styles on traumatic grief and depressive symptoms. J Nerv Ment Dis. 1998;186(9):566–73.

    Article  PubMed  Google Scholar 

  150. Prigerson HG, Shear MK, Bierhals AJ, Zonarich DL, Reynolds CF 3rd. Childhood adversity, attachment and personality styles as predictors of anxiety among elderly caregivers. Anxiety. 1996;2(5):234–41.

    Article  PubMed  CAS  Google Scholar 

  151. Heeke C, Stammel N, Heinrich M, Knaevelsrud C. Conflict-related trauma and bereavement: exploring differential symptom profiles of prolonged grief and posttraumatic stress disorder. BMC Psychiatry. 2017;17(1):118.

    Article  PubMed  PubMed Central  Google Scholar 

  152. Coelho AM, Delalibera MA, Barbosa A. Palliative care caregivers’ grief mediators: a prospective study. Am J Hosp Palliat Care. 2016;33(4):346–53.

    Article  PubMed  Google Scholar 

  153. Bonanno GA, Wortman CB, Lehman DR, Tweed R, Haring M, Sonnega J, et al. Resilience to loss and chronic grief: a prospective study from pre-loss to 18-months post-loss. J Pers Soc Psychol. 2002;83:1150–64.

    Article  PubMed  Google Scholar 

  154. Kersting A, Brahler E, Glaesmer H, Wagner B. Prevalence of complicated grief in a representative population-based sample. J Affect Disord. 2011;131(1–3):339–43.

    Article  PubMed  Google Scholar 

  155. Sealey M, Breen LJ, O’Connor M, Aoun SM. A scoping review of bereavement risk assessment measures: implications for palliative care. Palliat Med. 2015;29(7):577–89.

    Article  PubMed  Google Scholar 

  156. Lichtenthal W, Napolitano S, Roberts K, Sweeney C, Slivjak E. Meaning-centered grief therapy. In: Breitbart W, editor. Meaning-centered psychotherapy in the cancer setting: finding hope and meaning in the face of suffering. New York: Oxford; 2017.

    Google Scholar 

  157. Muta R, Sanjo M, Miyashita M, Wakabayashi R, Ando E, Morita T, et al. What bereavement follow-up does family members request in Japanese palliative care units? A qualitative study. Am J Hosp Palliat Care. 2014;31(5):485–94.

    Article  PubMed  Google Scholar 

  158. Morris SE, Block SD. Adding value to palliative care services: the development of an institutional bereavement program. J Palliat Med. 2015;18(11):915–22.

    Article  PubMed  Google Scholar 

  159. Goldstein J, Alter CL, Axelrod R. A psychoeducational bereavement-support group for families provided in an outpatient cancer center. J Cancer Educ. 1996;11(4):233–7.

    PubMed  CAS  Google Scholar 

  160. Abrahm JL, Cooley M, Ricacho L. Efficacy of an educational bereavement program for families of veterans with cancer. J Cancer Educ. 1995;10(4):207–12.

    PubMed  CAS  Google Scholar 

  161. Shear MK, Frank E, Houck PR. Treatment of complicated grief: a randomized controlled trial. JAMA. 2005;293(21):2601–8.

    Article  PubMed  PubMed Central  CAS  Google Scholar 

  162. Neimeyer R. Narrative strategies in grief therapy. J Constr Psychol. 1999;12:65–85.

    Google Scholar 

  163. Neimeyer R, editor. Techniques of grief therapy. New York: Routledge; 2012.

    Google Scholar 

  164. Welch JG, Mannix MM, Boergers J, Jelalian E, Barbosa F, Fujii-Rios H, et al. Parental interest in a bereavement support visit when a child dies from cancer. Omega. 2012;65(4):335–46.

    Article  PubMed  Google Scholar 

  165. Snaman JM, Kaye EC, Levine DR, Cochran B, Wilcox R, Sparrow CK, et al. Empowering bereaved parents through the development of a comprehensive bereavement program. J Pain Symptom Manag. 2017;53(4):767–75.

    Article  Google Scholar 

  166. Lichtenthal WG, Corner GW, Sweeney CR, Wiener L, Roberts KE, Baser RE, et al. Mental health services for parents who lost a child to cancer: if we build them, will they come? J Clin Oncol. 2015;33(20):2246–53.

    Article  PubMed  PubMed Central  Google Scholar 

  167. Jensen J, Weng C, Spraker-Perlman HL. A provider-based survey to assess bereavement care knowledge, attitudes, and practices in pediatric oncologists. J Palliat Med. 2017;20(3):266–72.

    Article  PubMed  PubMed Central  Google Scholar 

  168. Ruden BM. Bereavement follow-up: an opportunity to extend nursing care. J Pediatr Oncol Nurs. 1996;13(4):219–25.

    Article  PubMed  CAS  Google Scholar 

  169. Neimeyer RA. Reauthoring life narratives: grief therapy as meaning reconstruction. Isr J Psychiatry Relat Sci. 2001;38(3–4):171–83.

    PubMed  CAS  Google Scholar 

  170. Lichtenthal W, Neimeyer R. Directed journaling to facilitate meaning-making. In: Neimeyer R, editor. Techniques of grief therapy. New York: Routledge; 2012. p. 165–8.

    Google Scholar 

  171. Fillion L, Duval S, Dumont S, Gagnon P, Tremblay I, Bairati I, et al. Impact of a meaning-centered intervention on job satisfaction and on quality of life among palliative care nurses. Psycho-Oncology. 2009;18(12):1300–10.

    Article  PubMed  Google Scholar 

  172. Pessin H, Fenn N, Hendriksen E, DeRosa A, Applebaum A. Existential distress among health care providers caring for patients at the end of life. Curr Opin Support Palliat Care. 2015;9(1):77–86.

    Article  PubMed  Google Scholar 

Download references

Acknowledgments

The writing of this chapter and research by our team was generously supported by National Cancer Institute grants T32 CA009461, F31 CA192447, R03 CA139944, K07 CA172216, R01 CA128134, and P30 CA008748.

Author information

Authors and Affiliations

  1. The New School for Social Research, New York, NY, USA

    Kailey E. Roberts

  2. Department of Psychiatry and Behavioral Sciences, Memorial Sloan Kettering Cancer Center, New York, NY, USA

    Kailey E. Roberts & Allison Marziliano

  3. Department of Psychology, The Graduate Center, City University of New York, New York, NY, USA

    Aliza A. Panjwani

  4. Department of Psychiatry and Behavioral Sciences, Caregivers Clinic, Memorial Sloan Kettering Cancer Center, New York, NY, USA

    Allison J. Applebaum

  5. Department of Psychiatry and Behavioral Sciences, Bereavement Clinic, Memorial Sloan Kettering Cancer Center, New York, NY, USA

    Wendy G. Lichtenthal

Authors
  1. Kailey E. Roberts
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. Aliza A. Panjwani
    View author publications

    You can also search for this author in PubMed Google Scholar

  3. Allison Marziliano
    View author publications

    You can also search for this author in PubMed Google Scholar

  4. Allison J. Applebaum
    View author publications

    You can also search for this author in PubMed Google Scholar

  5. Wendy G. Lichtenthal
    View author publications

    You can also search for this author in PubMed Google Scholar

Corresponding author

Correspondence to Kailey E. Roberts .

Editor information

Editors and Affiliations

  1. Cape Cod Healthcare, Falmouth, Massachusetts, USA

    Peter Hopewood

  2. University of South Dakota Sanford School of Medicine, Vermillion, South Dakota, USA

    Mary J. Milroy

Rights and permissions

Reprints and permissions

Copyright information

© 2018 Springer International Publishing AG, part of Springer Nature

About this chapter

Check for updates. Verify currency and authenticity via CrossMark

Cite this chapter

Roberts, K.E., Panjwani, A.A., Marziliano, A., Applebaum, A.J., Lichtenthal, W.G. (2018). End-of-Life Care and Cancer: Psychosocial Needs of Patients and the Bereaved. In: Hopewood, P., Milroy, M. (eds) Quality Cancer Care . Springer, Cham. https://doi.org/10.1007/978-3-319-78649-0_14

Download citation

  • DOI: https://doi.org/10.1007/978-3-319-78649-0_14

  • Published:

  • Publisher Name: Springer, Cham

  • Print ISBN: 978-3-319-78648-3

  • Online ISBN: 978-3-319-78649-0

  • eBook Packages: MedicineMedicine (R0)

Publish with us

Policies and ethics

Search

Navigation