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End-of-Life Care

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Families in the Intensive Care Unit
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Abstract

The chapter on end-of-life care focuses on important aspects of caring for families of dying ICU patients. Mainly, this chapter discusses the symptom burden experienced by ICU families as they transition from intervention to end-of-life care, along with practical interventions to help alleviate families’ symptom burden. It provides suggestions on how best to support families who are in conflict during end-of-life decision-making. It discusses strategies that help families prepare for and cope during the transition where the patient is actively dying. Finally, issues affecting end-of-life care of families of underrepresented and LGBTQ populations are examined.

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References

  1. Makino J, Fujitani S, Twohig B, Krasnica S, Oropello J. End-of-life considerations in the ICU in Japan: ethical and legal perspectives. J Intensive Care. 2014;2(1):9.

    Article  PubMed  PubMed Central  Google Scholar 

  2. Angus DC, Barnato AE, Linde-Zwirble WT, et al. Use of intensive care at the end of life in the United States: an epidemiologic study. Crit Care Med. 2004;32(3):638–43.

    Article  PubMed  Google Scholar 

  3. Verkade MA, Epker JL, Nieuwenhoff MD, Bakker J, Kompanje EJ. Withdrawal of life-sustaining treatment in a mixed intensive care unit: most common in patients with catastropic brain injury. Neurocrit Care. 2012;16(1):130–5.

    Article  PubMed  Google Scholar 

  4. Wunsch H, Harrison DA, Harvey S, Rowan K. End-of-life decisions: a cohort study of the withdrawal of all active treatment in intensive care units in the United Kingdom. Intensive Care Med. 2005;31(6):823–31.

    Article  PubMed  Google Scholar 

  5. Azoulay E, Metnitz B, Sprung CL, et al. End-of-life practices in 282 intensive care units: data from the SAPS 3 database. Intensive Care Med. 2009;35(4):623–30.

    Article  PubMed  Google Scholar 

  6. Azoulay E, Pochard F, Kentish-Barnes N, et al. Risk of post-traumatic stress symptoms in family members of intensive care unit patients. Am J Respir Crit Care Med. 2005;171(9):987–94.

    Article  PubMed  Google Scholar 

  7. Kross EK, Engelberg RA, Gries CJ, Nielsen EL, Zatzick D, Curtis JR. ICU care associated with symptoms of depression and posttraumatic stress disorder among family members of patients who die in the ICU. Chest. 2011;139(4):795–801.

    Article  PubMed  Google Scholar 

  8. 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 

  9. Fridh I, Forsberg A, Bergbom I. Close relatives’ experiences of caring and of the physical environment when a loved one dies in an ICU. Intensive Crit Care Nurs. 2009;25(3):111–9.

    Article  PubMed  Google Scholar 

  10. Kisorio LC, Langley GC. End-of-life care in intensive care unit: family experiences. Intensive Crit Care Nurs. 2016;35:57–65.

    Article  PubMed  Google Scholar 

  11. Verhaeghe S, Defloor T, Van Zuuren F, Duijnstee M, Grypdonck M. The needs and experiences of family members of adult patients in an intensive care unit: a review of the literature. J Clin Nurs. 2005;14(4):501–9.

    Article  PubMed  Google Scholar 

  12. Coombs MA. The mourning before: can anticipatory grief theory inform family care in adult intensive care? Int J Palliat Nurs. 2010;16(12):580–4.

    Article  PubMed  Google Scholar 

  13. Fridh I, Forsberg A. A new tool to assess relatives’ experience of dying and death in the intensive care unit. J Thorac Dis. 2016;8(8):E781–3.

    Article  PubMed  PubMed Central  Google Scholar 

  14. Siegel MD, Hayes E, Vanderwerker LC, Loseth DB, Prigerson HG. Psychiatric illness in the next of kin of patients who die in the intensive care unit. Crit Care Med. 2008;36(6):1722–8.

    Article  PubMed  Google Scholar 

  15. Wright AA, Keating NL, Balboni TA, Matulonis UA, Block SD, Prigerson HG. Place of death: correlations with quality of life of patients with cancer and predictors of bereaved caregivers’ mental health. J Clin Oncol. 2010;28(29):4457–64.

    Article  PubMed  PubMed Central  Google Scholar 

  16. Davidson JE. Family-centered care: meeting the needs of patients’ families and helping families adapt to critical illness. Crit Care Nurse. 2009;29(3):28–34. quiz 35

    Article  PubMed  Google Scholar 

  17. Nunez ER, Schenker Y, Joel ID, et al. Acutely bereaved surrogates’ stories about the decision to limit life support in the ICU. Crit Care Med. 2015;43(11):2387–93.

    Article  PubMed  PubMed Central  Google Scholar 

  18. Davidson JE, Aslakson RA, Long AC, et al. Guidelines for family-centered care in the neonatal, pediatric, and adult ICU. Crit Care Med. 2017;45(1):103–28.

    Article  PubMed  Google Scholar 

  19. McAdam JL, Dracup KA, White DB, Fontaine DK, Puntillo KA. Symptom experiences of family members of intensive care unit patients at high risk for dying. Crit Care Med. 2010;38(4):1078–85.

    Article  PubMed  Google Scholar 

  20. McAdam JL, Fontaine DK, White DB, Dracup KA, Puntillo KA. Psychological symptoms of family members of high-risk intensive care unit patients. Am J Crit Care. 2012;21(6):386–393; quiz 394.

    Article  PubMed  Google Scholar 

  21. Pochard F, Darmon M, Fassier T, et al. Symptoms of anxiety and depression in family members of intensive care unit patients before discharge or death. A prospective multicenter study. J Crit Care. 2005;20(1):90–6.

    Article  PubMed  Google Scholar 

  22. Anderson WG, Arnold RM, Angus DC, Bryce CL. Posttraumatic stress and complicated grief in family members of patients in the intensive care unit. J Gen Intern Med. 2008;23(11):1871–6.

    Article  PubMed  PubMed Central  Google Scholar 

  23. Kentish-Barnes N, Chaize M, Seegers V, et al. Complicated grief after death of a relative in the intensive care unit. Eur Respir J. 2015;45(5):1341–52.

    Article  PubMed  Google Scholar 

  24. Gries CJ, Engelberg RA, Kross EK, et al. Predictors of symptoms of posttraumatic stress and depression in family members after patient death in the ICU. Chest. 2010;137(2):280–7.

    Article  PubMed  Google Scholar 

  25. Netzer G, Sullivan DR. Recognizing, naming, and measuring a family intensive care unit syndrome. Ann Am Thorac Soc. 2014;11(3):435–41.

    Article  PubMed  PubMed Central  Google Scholar 

  26. Davidson JE, Jones C, Bienvenu OJ. Family response to critical illness: postintensive care syndrome-family. Crit Care Med. 2012;40(2):618–24.

    Article  PubMed  Google Scholar 

  27. Butler JM, Hirshberg EL, Hopkins RO, et al. Preliminary identification of coping profiles relevant to surrogate decision making in the ICU. PLoS One. 2016;11(11):e0166542.

    Article  PubMed  PubMed Central  CAS  Google Scholar 

  28. Ganzini L, Lee MA, Heintz RT, Bloom JD, Fenn DS. The effect of depression treatment on elderly patients’ preferences for life-sustaining medical therapy. Am J Psychiatry. 1994;151(11):1631–6.

    Article  CAS  PubMed  Google Scholar 

  29. Stephenson PL. Before the teaching begins: managing patient anxiety prior to providing education. Clin J Oncol Nurs. 2006;10(2):241–5.

    Article  PubMed  Google Scholar 

  30. Bloomer MJ, Endacott R, Ranse K, Coombs MA. Navigating communication with families during withdrawal of life-sustaining treatment in intensive care: a qualitative descriptive study in Australia and New Zealand. J Clin Nurs. 2017;26(5–6):690–7.

    Article  PubMed  Google Scholar 

  31. Coombs MA, Parker R, Ranse K, Endacott R, Bloomer MJ. An integrative review of how families are prepared for, and supported during withdrawal of life-sustaining treatment in intensive care. J Adv Nurs. 2017;73(1):39–55.

    Article  PubMed  Google Scholar 

  32. Scheunemann 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):543–54.

    Article  PubMed  Google Scholar 

  33. Jacob M, Horton C, Rance-Ashley S, et al. Needs of patients’ family members in an intensive care unit with continuous visitation. Am J Crit Care. 2016;25(2):118–25.

    Article  PubMed  Google Scholar 

  34. Price B. Managing patients’ anxiety about planned medical interventions. Nurs Stand. 2017;31(47):53–63.

    Article  PubMed  Google Scholar 

  35. Chiang VCL, Lee RLP, Ho FM, et al. Fulfilling the psychological and information need of the family members of critically ill patients using interactive mobile technology: a randomised controlled trial. Intensive Crit Care Nurs. 2017;41:77–83.

    Article  PubMed  Google Scholar 

  36. Seaman JB, Arnold RM, Scheunemann LP, White DB. An integrated framework for effective and efficient communication with families in the adult intensive care unit. Ann Am Thorac Soc. 2017;14(6):1015–20.

    Article  PubMed  PubMed Central  Google Scholar 

  37. Fawole OA, Dy SM, Wilson RF, et al. A systematic review of communication quality improvement interventions for patients with advanced and serious illness. J Gen Intern Med. 2013;28(4):570–7.

    Article  PubMed  Google Scholar 

  38. Peden-McAlpine C, Liaschenko J, Traudt T, Gilmore-Szott E. Constructing the story: how nurses work with families regarding withdrawal of aggressive treatment in ICU – a narrative study. Int J Nurs Stud. 2015;52(7):1146–56.

    Article  PubMed  Google Scholar 

  39. Schenker Y, Crowley-Matoka M, Dohan D, Tiver GA, Arnold RM, White DB. 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 

  40. Schenker Y, White DB, Crowley-Matoka M, Dohan D, Tiver GA, Arnold RM. “It hurts to know... and it helps”: exploring how surrogates in the ICU cope with prognostic information. J Palliat Med. 2013;16(3):243–9.

    Article  PubMed  PubMed Central  Google Scholar 

  41. Kon AA, Davidson JE, Morrison W, et al. Shared decision making in ICUs: an American College of Critical Care Medicine and American Thoracic Society Policy Statement. Crit Care Med. 2016;44(1):188–201.

    Article  PubMed  PubMed Central  Google Scholar 

  42. Adams JA, Anderson RA, Docherty SL, Tulsky JA, Steinhauser KE, Bailey DE Jr. Nursing strategies to support family members of ICU patients at high risk of dying. Heart Lung. 2014;43(5):406–15.

    Article  PubMed  PubMed Central  Google Scholar 

  43. Stapleton RD, Engelberg RA, Wenrich MD, Goss CH, Curtis JR. Clinician statements and family satisfaction with family conferences in the intensive care unit. Crit Care Med. 2006;34(6):1679–85.

    Article  PubMed  Google Scholar 

  44. Hutchison PJ, McLaughlin K, Corbridge T, et al. Dimensions and role-specific mediators of surrogate trust in the ICU. Crit Care Med. 2016;44(12):2208–14.

    Article  PubMed  PubMed Central  Google Scholar 

  45. Kentish-Barnes N, Lemiale V, Chaize M, Pochard F, Azoulay E. Assessing burden in families of critical care patients. Crit Care Med. 2009;37(10 Suppl):S448–56.

    Article  PubMed  Google Scholar 

  46. Zigmond AS, Snaith RP. The hospital anxiety and depression scale. Acta Psychiatr Scand. 1983;67(6):361–70.

    Article  CAS  PubMed  Google Scholar 

  47. Creamer M, Bell R, Failla S. Psychometric properties of the impact of event scale – revised. Behav Res Ther. 2003;41(12):1489–96.

    Article  PubMed  Google Scholar 

  48. Weiss D. Assessing psychological trauma and PTSD. 2nd ed. New York: The Guilford Press; 2004.

    Google Scholar 

  49. Toua RE, de Kock JE, Welzel T. Predicting mortality rates: comparison of an administrative predictive model (hospital standardized mortality ratio) with a physiological predictive model (acute physiology and chronic health evaluation IV)--a cross-sectional study. J Crit Care. 2016;31(1):7–12.

    Article  PubMed  Google Scholar 

  50. Festic E, Wilson ME, Gajic O, Divertie GD, Rabatin JT. Perspectives of physicians and nurses regarding end-of-life care in the intensive care unit. J Intensive Care Med. 2012;27(1):45–54.

    Article  PubMed  Google Scholar 

  51. Long-Sutehall T, Willis H, Palmer R, Ugboma D, Addington-Hall J, Coombs M. Negotiated dying: a grounded theory of how nurses shape withdrawal of treatment in hospital critical care units. Int J Nurs Stud. 2011;48(12):1466–74.

    Article  PubMed  Google Scholar 

  52. Pattison N, O’Gara G, Wigmore T. Negotiating transitions: involvement of critical care outreach teams in end-of-life decision making. Am J Crit Care. 2015;24(3):232–40.

    Article  PubMed  Google Scholar 

  53. McCallum A, McConigley R. Nurses’ perceptions of caring for dying patients in an open critical care unit: a descriptive exploratory study. Int J Palliat Nurs. 2013;19(1):25–30.

    Article  PubMed  Google Scholar 

  54. Coombs MA, Addington-Hall J, Long-Sutehall T. Challenges in transition from intervention to end of life care in intensive care: a qualitative study. Int J Nurs Stud. 2012;49(5):519–27.

    Article  PubMed  Google Scholar 

  55. Nelson JE, Walker AS, Luhrs CA, Cortez TB, Pronovost PJ. Family meetings made simpler: a toolkit for the intensive care unit. J Crit Care. 2009;24(4):626 e627–14.

    Article  Google Scholar 

  56. Torke AM, Wocial LD, Johns SA, et al. The family navigator: a pilot intervention to support intensive care unit family surrogates. Am J Crit Care. 2016;25(6):498–507.

    Article  PubMed  PubMed Central  Google Scholar 

  57. Curtis JR, Treece PD, Nielsen EL, et al. Randomized trial of communication facilitators to reduce family distress and intensity of end-of-life care. Am J Respir Crit Care Med. 2016;193(2):154–62.

    Article  PubMed  PubMed Central  Google Scholar 

  58. Wiegand DL. Family experiences during the dying process after withdrawal of life-sustaining therapy. Dimens Crit Care Nurs. 2016;35(3):160–6.

    Article  PubMed  Google Scholar 

  59. White DB, Cua SM, Walk R, et al. Nurse-led intervention to improve surrogate decision making for patients with advanced critical illness. Am J Crit Care. 2012;21(6):396–409.

    Article  PubMed  PubMed Central  Google Scholar 

  60. Moore CD, Bernardini GL, Hinerman R, et al. The effect of a family support intervention on physician, nurse, and family perceptions of care in the surgical, neurological, and medical intensive care units. Crit Care Nurs Q. 2012;35(4):378–87.

    Article  PubMed  Google Scholar 

  61. McAndrew NS, Leske JS. A balancing act: experiences of nurses and physicians when making end-of-life decisions in intensive care units. Clin Nurs Res. 2015;24(4):357–74.

    Article  PubMed  Google Scholar 

  62. Wiegand DL, Petri L. Is a good death possible after withdrawal of life-sustaining therapy? Nurs Clin North Am. 2010;45(3):427–40.

    Article  PubMed  Google Scholar 

  63. Wujtewicz M, Wujtewicz MA, Owczuk R. Conflicts in the intensive care unit. Anaesthesiol Intensive Ther. 2015;47(4):360–2.

    Article  PubMed  Google Scholar 

  64. Jezierska N. Psychological reactions in family members of patients hospitalised in intensive care units. Anaesthesiol Intensive Ther. 2014;46(1):42–5.

    Article  PubMed  Google Scholar 

  65. Adams A, Mannix T, Harrington A. Nurses’ communication with families in the intensive care unit – a literature review. Nurs Crit Care. 2017;22(2):70–80.

    Article  PubMed  Google Scholar 

  66. Schuster RA, Hong SY, Arnold RM, White DB. Investigating conflict in ICUs-is the clinicians’ perspective enough? Crit Care Med. 2014;42(2):328–35.

    Article  PubMed  PubMed Central  Google Scholar 

  67. Chiarchiaro J, White DB, Ernecoff NC, Buddadhumaruk P, Schuster RA, Arnold RM. Conflict management strategies in the ICU differ between palliative care specialists and intensivists. Crit Care Med. 2016;44(5):934–42.

    Article  PubMed  PubMed Central  Google Scholar 

  68. Bruce CR, Newell AD, Brewer JH, et al. Developing and testing a comprehensive tool to assess family meetings: empirical distinctions between high- and low-quality meetings. J Crit Care. 2017;42:223–30.

    Article  PubMed  Google Scholar 

  69. 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 

  70. Pollak KI, Arnold RM, Jeffreys AS, et al. Oncologist communication about emotion during visits with patients with advanced cancer. J Clin Oncol. 2007;25(36):5748–52.

    Article  PubMed  Google Scholar 

  71. Mirel M, Hartjes T. Bringing palliative care to the surgical intensive care unit. Crit Care Nurse. 2013;33(1):71–4.

    Article  PubMed  Google Scholar 

  72. Noreika DM, Coyne PJ. Implementing palliative care interdisciplinary teams: consultative versus integrative models. Crit Care Nurs Clin North Am. 2015;27(3):297–306.

    Article  PubMed  Google Scholar 

  73. Nelson JE, Bassett R, Boss RD, et al. Models for structuring a clinical initiative to enhance palliative care in the intensive care unit: a report from the IPAL-ICU project (improving palliative care in the ICU). Crit Care Med. 2010;38(9):1765–72.

    Article  PubMed  PubMed Central  Google Scholar 

  74. Mun E, Nakatsuka C, Umbarger L, et al. Use of improving palliative care in the ICU (intensive care unit) guidelines for a palliative care initiative in an ICU. Perm J. 2017;21.

    Google Scholar 

  75. Carson SS, Cox CE, Wallenstein S, et al. Effect of palliative care-led meetings for families of patients with chronic critical illness: a randomized clinical trial. JAMA. 2016;316(1):51–62.

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  76. Efstathiou N, Walker W. Intensive care nurses’ experiences of providing end-of-life care after treatment withdrawal: a qualitative study. J Clin Nurs. 2014;23(21–22):3188–96.

    Article  PubMed  Google Scholar 

  77. Mark NM, Rayner SG, Lee NJ, Curtis JR. Global variability in withholding and withdrawal of life-sustaining treatment in the intensive care unit: a systematic review. Intensive Care Med. 2015;41(9):1572–85.

    Article  CAS  PubMed  Google Scholar 

  78. van Beinum A, Hornby L, Ramsay T, Ward R, Shemie SD, Dhanani S. Exploration of withdrawal of life-sustaining therapy in Canadian intensive care units. J Intensive Care Med. 2016;31(4):243–51.

    Article  PubMed  Google Scholar 

  79. Downar J, Delaney JW, Hawryluck L, Kenny L. Guidelines for the withdrawal of life-sustaining measures. Intensive Care Med. 2016;42(6):1003–17.

    Article  PubMed  Google Scholar 

  80. Truog RD, Campbell ML, Curtis JR, et al. Recommendations for end-of-life care in the intensive care unit: a consensus statement by the American College [corrected] of Critical Care Medicine. Crit Care Med. 2008;36(3):953–63.

    Article  PubMed  Google Scholar 

  81. Sprung CL, Truog RD, Curtis JR, et al. Seeking worldwide professional consensus on the principles of end-of-life care for the critically ill. The Consensus for Worldwide End-of-Life Practice for Patients in Intensive Care Units (WELPICUS) study. Am J Respir Crit Care Med. 2014;190(8):855–66.

    Article  PubMed  Google Scholar 

  82. Epker JL, Bakker J, Lingsma HF, Kompanje EJ. An observational study on a protocol for withdrawal of life-sustaining measures on two non-academic intensive care units in the Netherlands: few signs of distress, no suffering? J Pain Symptom Manag. 2015;50(5):676–84.

    Article  Google Scholar 

  83. Campbell ML, Yarandi HN, Mendez M. A two-group trial of a terminal ventilator withdrawal algorithm: pilot testing. J Palliat Med. 2015;18(9):781–5.

    Article  PubMed  Google Scholar 

  84. Valentin A, Druml W, Steltzer H, Wiedermann CJ. Recommendations on therapy limitation and therapy discontinuation in intensive care units: consensus paper of the Austrian associations of intensive care medicine. Intensive Care Med. 2008;34(4):771–6.

    Article  PubMed  Google Scholar 

  85. Vincent JL, Schetz M, De Waele JJ, et al. “Piece” of mind: end of life in the intensive care unit statement of the Belgian Society of Intensive Care Medicine. J Crit Care. 2014;29(1):174–5.

    Article  PubMed  Google Scholar 

  86. Delaney JW, Downar J. How is life support withdrawn in intensive care units: a narrative review. J Crit Care. 2016;35:12–8.

    Article  PubMed  Google Scholar 

  87. Billings JA. Humane terminal extubation reconsidered: the role for preemptive analgesia and sedation. Crit Care Med. 2012;40(2):625–30.

    Article  PubMed  Google Scholar 

  88. Campbell ML. How to withdraw mechanical ventilation: a systematic review of the literature. AACN Adv Crit Care. 2007;18(4):397–403. quiz 344–395

    PubMed  Google Scholar 

  89. Szalados JE. Discontinuation of mechanical ventilation at end-of-life: the ethical and legal boundaries of physician conduct in termination of life support. Crit Care Clin. 2007;23(2):317–37. xi

    Article  PubMed  Google Scholar 

  90. Connolly C, Miskolci O, Phelan D, Buggy DJ. End-of-life in the ICU: moving from ‘withdrawal of care’ to a palliative care, patient-centred approach. Br J Anaesth. 2016;117(2):143–5.

    Article  CAS  PubMed  Google Scholar 

  91. Wiegand DL. Withdrawal of life-sustaining therapy after sudden, unexpected life-threatening illness or injury: interactions between patients’ families, healthcare providers, and the healthcare system. Am J Crit Care. 2006;15(2):178–87.

    PubMed  Google Scholar 

  92. Hinkle LJ, Bosslet GT, Torke AM. Factors associated with family satisfaction with end-of-life care in the ICU: a systematic review. Chest. 2015;147(1):82–93.

    Article  PubMed  Google Scholar 

  93. 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 e319–6.

    Article  Google Scholar 

  94. Garrouste-Orgeas M, Perier A, Mouricou P, et al. Writing in and reading ICU diaries: qualitative study of families’ experience in the ICU. PLoS One. 2014;9(10):e110146.

    Article  PubMed  PubMed Central  CAS  Google Scholar 

  95. Johansson M, Wahlin I, Magnusson L, Runeson I, Hanson E. Family members’ experiences with intensive care unit diaries when the patient does not survive. Scand J Caring Sci. 2018;32(1):233–40.

    Article  PubMed  Google Scholar 

  96. Arbour RB, Wiegand DL. Self-described nursing roles experienced during care of dying patients and their families: a phenomenological study. Intensive Crit Care Nurs. 2014;30(4):211–8.

    Article  PubMed  Google Scholar 

  97. Hoye S, Severinsson E. Intensive care nurses’ encounters with multicultural families in Norway: an exploratory study. Intensive Crit Care Nurs. 2008;24(6):338–48.

    Article  PubMed  Google Scholar 

  98. Hoye S, Severinsson E. Professional and cultural conflicts for intensive care nurses. J Adv Nurs. 2010;66(4):858–67.

    Article  PubMed  Google Scholar 

  99. Van Keer RL, Deschepper R, Francke AL, Huyghens L, Bilsen J. Conflicts between healthcare professionals and families of a multi-ethnic patient population during critical care: an ethnographic study. Crit Care. 2015;19:441.

    Article  PubMed  PubMed Central  Google Scholar 

  100. Kagawa-Singer M, Blackhall LJ. Negotiating cross-cultural issues at the end of life: “you got to go where he lives”. JAMA. 2001;286(23):2993–3001.

    Article  CAS  PubMed  Google Scholar 

  101. Norris WM, Wenrich MD, Nielsen EL, Treece PD, Jackson JC, Curtis JR. Communication about end-of-life care between language-discordant patients and clinicians: insights from medical interpreters. J Palliat Med. 2005;8(5):1016–24.

    Article  PubMed  Google Scholar 

  102. Bulow HH, Sprung CL, Reinhart K, et al. The world’s major religions’ points of view on end-of-life decisions in the intensive care unit. Intensive Care Med. 2008;34(3):423–30.

    Article  PubMed  Google Scholar 

  103. Sprung CL, Maia P, Bulow HH, et al. The importance of religious affiliation and culture on end-of-life decisions in European intensive care units. Intensive Care Med. 2007;33(10):1732–9.

    Article  PubMed  Google Scholar 

  104. Curtis JR, Vincent JL. Ethics and end-of-life care for adults in the intensive care unit. Lancet. 2010;376(9749):1347–53.

    Article  PubMed  Google Scholar 

  105. Hoye S, Severinsson E. Multicultural family members’ experiences with nurses and the intensive care context: a hermeneutic study. Intensive Crit Care Nurs. 2010;26(1):24–32.

    Article  PubMed  Google Scholar 

  106. Koffman J, M C. No way in: Including disadvantaged population and patient groups at the end of life. Berkshire: Open University Press; 2008.

    Google Scholar 

  107. Eliason MJ, Schope R. Does “don’t ask don’t tell” apply to health cate? Lesbian, gay, and bisexual people’s disclosure to health care providers. J Gay Lesbian Med Assoc. 2001;5(4):125–34.

    Article  Google Scholar 

  108. Clark ME, Landers S, Linde R, Sperber J. The GLBT health access project: a state-funded effort to improve access to care. Am J Public Health. 2001;91(6):895–6.

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  109. Neville S, Henrickson M. Perceptions of lesbian, gay and bisexual people of primary healthcare services. J Adv Nurs. 2006;55(4):407–15.

    Article  PubMed  Google Scholar 

  110. Sinding C, Barnoff L, Grassau P. Homophobia and heterosexism in cancer care: the experiences of lesbians. Can J Nurs Res. 2004;36(4):170–88.

    PubMed  Google Scholar 

  111. Grant J, Mottet L, Tanis J. National transgender discrimination survey report on health and healthcare. Washington D.C.: National Center for Transgender Equality and the National Gay and Lesbian Task Force; 2010.

    Google Scholar 

  112. Stonewall. Planning for later life: a guide for lesbian, gay and bisexual people. Manchester: Stonewall and the Cooperative Funeral Care; 2014.

    Google Scholar 

  113. Rawlings D. End-of-life care considerations for gay, lesbian, bisexual, and transgender individuals. Int J Palliat Nurs. 2012;18(1):29–34.

    Article  PubMed  Google Scholar 

  114. Harding R, Epiphaniou E, Chidgey-Clark J. Needs, experiences, and preferences of sexual minorities for end-of-life care and palliative care: a systematic review. J Palliat Med. 2012;15(5):602–11.

    Article  PubMed  Google Scholar 

  115. Moss V. Caring for persons with AIDS: initiatives. The Mildmay approach. J Palliat Care. 1988;4(4):102–6.

    CAS  PubMed  Google Scholar 

  116. Bristowe K, Marshall S, Harding R. The bereavement experiences of lesbian, gay, bisexual and/or trans* people who have lost a partner: a systematic review, thematic synthesis and modelling of the literature. Palliat Med. 2016;30(8):730–44.

    Article  PubMed  PubMed Central  Google Scholar 

  117. Marie C. Hiding who I am: the reality of end of life care for LGBT people. 2016. https://www.mariecurie.org.uk/globalassets/media/documents/policy/policy-publications/june-2016/reality-end-of-life-care-lgbt-people.pdf.

  118. Cartwright C, Hughes M, Lienert T. End-of-life care for gay, lesbian, bisexual and transgender people. Cult Health Sex. 2012;14(5):537–48.

    Article  PubMed  Google Scholar 

  119. Matthews AK, Peterman AH, Delaney P, Menard L, Brandenburg D. A qualitative exploration of the experiences of lesbian and heterosexual patients with breast cancer. Oncol Nurs Forum. 2002;29(10):1455–62.

    Article  PubMed  Google Scholar 

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Correspondence to Jennifer L. McAdam .

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McAdam, J.L. (2018). End-of-Life Care. In: Netzer, G. (eds) Families in the Intensive Care Unit. Springer, Cham. https://doi.org/10.1007/978-3-319-94337-4_17

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  • DOI: https://doi.org/10.1007/978-3-319-94337-4_17

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