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Withholding and Withdrawing Life-Sustaining Treatment

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Emerging Topics and Controversies in Neonatology

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Abstract

Although neonatologists are not newcomers to issues related to life and death, how infants die in the intensive care unit has changed. Previously infants died in spite of life sustaining interventions. Now, infants generally die after intensive care is withdrawn or withheld, either because infants are physiologically unstable or for reasons of quality of life.

Some infants are also discharged home with complex care needs and survive for a period of time. Thus, dialogue in the medical community is shifting from the mechanics of interventions or treatment withdrawal to conversations about quality of life, nuances of decision making and supportive care for both the infant and parents.

Emphasis on how to integrate palliative care principles early in disease trajectories have become an integral part of the neonatologist’s role. In this chapter, we take the approach that this journey begins early in the neonatal course and focus on how to optimise the integration and delivery of intensive, as well as palliative care.

We will explore potential barriers impeding conversations about transitioning goals, contemplate what defines ‘good’ palliative care, discuss communication and decision-making strategies and illustrate how parental input can help define quality of ‘palliative’ and ‘end of life’ care and help establish best practice standards.

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References

  1. Saunders C. The evolution of palliative care. J R Soc Med. 2001;94:430–2.

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  2. Meghani SH. A concept analysis of palliative care in the United States. J Adv Nurs. 2004;46(2):152–61.

    Article  PubMed  Google Scholar 

  3. Kang TI, Munson D, Hwang J, Feudtner C. Integration of palliative care into the care of children with serious illness. Pediatr Rev. 2014;35(8):318–26.

    Article  PubMed  Google Scholar 

  4. Warrick C, Perera L, Murdock E, Nicholl RM. Guidance for withdrawal and withholding of intensive care as part of neonatal end of life care. Br Med Bull. 2011;98:99–113.

    Article  PubMed  Google Scholar 

  5. Balaguer A, Martin-Ancel A, Ortigoza-Escobar D, Escribano J, Argemi J. The model of palliative care in the perinatal setting; a review of the literature. BMC Pediatr. 2012;12(25):1–7.

    Google Scholar 

  6. Feudtner C, Nathanson P. Pediatric palliative care and pediatric medical ethics: opportunities and challenges. Pediatrics. 2014;133:S1–7.

    Article  PubMed  Google Scholar 

  7. Kopelman LM. Are the 21-year-old baby doe rules misunderstood or mistaken? Pediatrics. 2005;115(3):797–802.

    Article  PubMed  Google Scholar 

  8. Duff RS, Campbell AG. Moral and ethical dilemmas in the special-care nursery. N Engl J Med. 1973;289:890–4.

    Article  CAS  PubMed  Google Scholar 

  9. Duff R, Campbell A. On deciding the care of severely handicapped or dying persons: with particular reference to infants. Pediatrics. 1976;57(4):487–93.

    CAS  PubMed  Google Scholar 

  10. Silverman WA. A hospice setting for humane neonatal death. Pediatrics. 1982;69(2):239.

    CAS  PubMed  Google Scholar 

  11. Whitfield JM, Siegel RE, Glicken AD, Harmon RJ, Powers LK, Goldson EJ. The application of hospice concepts to neonatal care. Am J Dis Child. 1982;136:421–4.

    CAS  PubMed  Google Scholar 

  12. Carter BS. Pediatric palliative care in infants and neonates. Children. 2018;5(21):1–9.

    Google Scholar 

  13. American Academy of Pediatrics Committee on Fetus and Newborn. Noninitiation or withdrawal of intensive care for high-risk newborns. Pediatrics. 2007;119(2):401–3.

    Article  Google Scholar 

  14. American Academy of Pediatrics Section on Hospice and Palliative Medicine and Committee on Hospital Care. Pediatric palliative care and hospice care commitments, guidelines, and recommendations. Pediatrics. 2013;132(5):966–72.

    Article  Google Scholar 

  15. Royal College of Paediatrics And Child Health. Withholding or withdrawing life sustaining treatment in children: a framework for practice. In: Withholding or withdrawing life sustaining treatment in children: a framework for practice. 2nd edn. 2004. https://councilfordisabledchildren.org.uk/sites/default/files/field/attachemnt/Withholding%26withdrawing_treatment.pdf. Accessed 8 Jun 2018.

  16. Weiner J, Sharma J, Lantos J, Kilbride H. How infants die in the neonatal intensive care unit. Arch Pediatr Adolesc Med. 2011;165(7):630–4.

    Article  PubMed  Google Scholar 

  17. Wall SN, Partridge JC. Death in the intensive care nursery: physician practice of withdrawing and withholding life support. Pediatrics. 1997;99(1):64–70.

    Article  CAS  PubMed  Google Scholar 

  18. Verhagen AA, Janvier A, Leuthner SR, Andrews B, Lagatta J, Bos AF, Meadow W. Categorizing neonatal deaths: a cross-cultural study in the United States, Canada, and The Netherlands. J Pediatr. 2010;156:33–7.

    Article  PubMed  Google Scholar 

  19. Cortezzo DE, Sanders MR, Brownell E, Moss K. Neonatologists perspective of palliative and end of life care in neonatal intensive care units. J Perinatol. 2013;33:731–5.

    Article  CAS  PubMed  Google Scholar 

  20. Boss RD, Hutton N, Donohue PK, Arnold RM. Neonatologist training to guide family decision making for critically ill infants. Arch Pediatr Adolesc Med. 2009;163(9):783–8.

    Article  PubMed  PubMed Central  Google Scholar 

  21. Boldt AM, Yusuf F, Himelstein BP. Perceptions of the term palliative care. J Palliat Med. 2006;9(5):1128–36.

    Article  Google Scholar 

  22. Katz NM. The term ‘supportive care’ is preferable to ‘palliative care’ for consults in the cardiothoracic intensive care unit. J Thorac Cardiovasc Surg. 2018;155(5):2030–1.

    Article  PubMed  Google Scholar 

  23. Fadul N, Elsayem A, Palmer L, Del Fabbro E, Swint K, Li Z, et al. Supportive verses palliative care: what’s in a name? Cancer. 2009;115:2013–21.

    Article  PubMed  Google Scholar 

  24. Davies B, Sehring S, Partridge JC, Cooper BA, Hughes A, Philip JC, et al. Barriers to palliative care for children: perceptions of pediatric health care providers. Pediatrics. 2008;121(2):282–8.

    Article  PubMed  Google Scholar 

  25. Thompson LA, Knapp C, Madden V, Shenkman E. Pediatricians’ perceptions of and preferred timing for pediatric palliative care. Pediatrics. 2009;123(5):e777–82.

    Article  PubMed  Google Scholar 

  26. Maciasz RM, Arnold R, Chu E, Park SY, White DB, Borgenheimer L, 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):1–9.

    Article  Google Scholar 

  27. Miyashita M, Hirai K, Morita T, Sanjo M, Uchitomi Y. Barriers to referral to inpatient palliative care units in Japan: a qualitative survey with content analysis. Support Care Cancer. 2008;16:217–22.

    Article  PubMed  Google Scholar 

  28. Horowitz R, Gramling R, Quill T. Palliative care education in U.S. medical schools. Med Educ. 2014;48:59–66.

    Article  PubMed  Google Scholar 

  29. Morrison L, Opatik Scott J, Block S, American Board of Hospice and Palliative Medicine Competencies Work Group. Developing initial competency-based outcomes for the hospice and palliative medicine subspecialist. Phase I of the Hospice and Palliative Medicine Competencies Project. J Palliat Med. 2007;10:313–30.

    Article  PubMed  Google Scholar 

  30. Dana-Farber Cancer Institute: Pediatric Advanced Care Team. 2018. https://www.dana-farber.org/pediatric-advanced-care-team/. Accessed 20 Aug 2018.

  31. Dalal S, Palla S, Hui D, Nguyen L, Chacko R, Lia Z, et al. Association between a name change from palliative to supportive care and the timing of patient referrals at a comprehensive cancer center. Oncologist. 2011;16:105–11.

    Article  PubMed  PubMed Central  Google Scholar 

  32. Marc-Aurele K, English NK. Primary palliative care in neonatal intensive care. Semin Perinatol. 2017;41:133–9.

    Article  PubMed  Google Scholar 

  33. Knapp C, Thompson L. Factors associated with perceived barriers to pediatric palliative care a survey of pediatricians in Florida and California. Palliat Med. 2011;26(3):268–74.

    Article  PubMed  Google Scholar 

  34. Feudtner C, Kang TI, Hexem KR, Friedrichsdorf SJ, Osenga K, Siden H, et al. Pediatric palliative care patients: a prospective multicenter cohort study. Pediatrics. 2011;127(6):1094–101.

    Article  PubMed  Google Scholar 

  35. Mack JW, Wolfe J, Cook F, Grier HE, Cleary PD, Weeks JC. Hope and prognostic disclosure. J Clin Oncol. 2007;25(35):5636–42.

    Article  PubMed  Google Scholar 

  36. Mack JW, Wolfe J, Grier HE, Cleary PD, Weeks JC. Communication about prognosis between parents and physicians of children with cancer parent preferences and the impact of prognostic information. J Clin Oncol. 2006;24(33):5265–70.

    Article  PubMed  Google Scholar 

  37. Mack JW, Wolfe J, Cook F, Grier HE, Cleary PD, Weeks JC. Understanding of prognosis among parents of children with cancer. Parental optimism and the parent physician interaction. J Clin Oncol. 2007;25(11):1357–62.

    Article  PubMed  Google Scholar 

  38. Cote-Arsenault D, Denney-Koelsch E. “Have no regrets”: parents’ experiences and developmental tasks in pregnancy with a lethal fetal diagnosis. Soc Sci Med. 2016;154:100–9.

    Article  PubMed  PubMed Central  Google Scholar 

  39. Szymczak JE, Schall T, Hill DL, Walter JK, Parikh S, DiDomenico C, Feudtner C. Pediatric oncology providers perceptions of palliative care service: the influence of emotional esteem and emotional labor. J Pain Symptom Manage. 2018;55(5):1260–8.

    Article  PubMed  PubMed Central  Google Scholar 

  40. Pierucci RL, Kirby RS, Leuthner SR. End of life care for neonates and infants: the experience and effects of a palliative care consultation service. Pediatrics. 2001;108(3):653–60.

    Article  CAS  PubMed  Google Scholar 

  41. Milstein J. A paradigm of integrative care: healing with curing throughout life, “being with” and “doing to”. J Perinatol. 2005;25(9):563–8.

    Article  PubMed  Google Scholar 

  42. Van der Geest IM, Darlington AE, Streng IC, Michiels EMC, Pieters R, van den Heuvel-Eibrink MM. Parents experiences of pediatric palliative care and the impact on long term parental grief. J Pain Symptom Manage. 2014;47(6):1043–53.

    Article  PubMed  Google Scholar 

  43. Kreicbergs U, Valdimarsdóttir U, Onelöv E, Björk O, Steineck G, Henter JI. Care-related distress: a nationwide study of parents who lost their child to cancer. J Clin Oncol. 2005;23(36):9162–71.

    Article  PubMed  Google Scholar 

  44. Carter BS, Jones PM. Evidence-Based comfort care for neonates towards the end of life. Semin Fetal Neonatal Med. 2013;18:88–92.

    Article  PubMed  Google Scholar 

  45. Frader J, Kodish E, Lantos JD. Ethics rounds—symbolic resuscitation, medical futility, and parental rights. Pediatrics. 2010;126:769.

    Article  PubMed  Google Scholar 

  46. Lantos JD, Meadow WL. Should the “slow code” be resuscitated? Am J Bioeth. 2011;11(11):8–12.

    Article  PubMed  Google Scholar 

  47. Janvier A, Barrington K. What is an appropriate code? Am J Bioeth. 2011;11(11):18–20.

    Article  PubMed  Google Scholar 

  48. Uthaya S, Mancini A, Beardsley C, Wood D, Ranmal R, Modi N. Managing palliation in the neonatal unit. Arch Dis Child Fetal Neonatal Ed. 2014;99(5):F349–52.

    Article  PubMed  Google Scholar 

  49. Younge N, Smith PB, Goldberg RN, Brandon DH, Simmons C, Cotton CM, Bidegain M. Impact of a palliative care program on end of life care in a neonatal intensive care unit. J Perinatol. 2015;35(3):218–22.

    Article  CAS  PubMed  Google Scholar 

  50. Caitlin A, Carter B. Creation of neonatal end of life palliative care protocol. J Perinatol. 2002;22:184–95.

    Article  Google Scholar 

  51. Haug S, Farooqi S, Wilson CG, Hopper A, Oei G, Carter B. Survey on Neonatal end of life comfort care guidelines across America. J Pain Symptom Manage. 2018;55:979–84.

    Article  PubMed  Google Scholar 

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

    PubMed  Google Scholar 

  53. Melin-Johannson C, Axelsson I, Grundberg MJ, Hallqvist F. When a child dies: parents experience of palliative care an integrative literature review. J Pediatr Nurs. 2014;29:660–9.

    Article  Google Scholar 

  54. Himelstein BP, Hilden JM, Boldt AM, Weissman D. Pediatric palliative care. N Engl J Med. 2004;350:1752–62.

    Article  CAS  PubMed  Google Scholar 

  55. Feudtner C, Womer J, Augustin R, Remke S, Wolfe J, Friebert S, Weissman D. Pediatric palliative care programs in children’s hospitals: a cross sectional national survey. Pediatrics. 2013;132(6):1063–70.

    Article  PubMed  Google Scholar 

  56. Leuthner S. Fetal palliative care. Clin Perinatol. 2004;31:649–65.

    Article  PubMed  Google Scholar 

  57. Leuthner S, Jones EL. Fetal concerns program. A model for perinatal palliative care. MCN: Am J Matern Child Nurs. 2007;32(5):272–8.

    Google Scholar 

  58. Carter BS, Bhatia J. Comfort/ palliative care guidelines for neonatal practice development and implementation in an academic medical center. J Perinatol. 2001;21:279–83.

    Article  CAS  PubMed  Google Scholar 

  59. Feudtner C, Walter JK, Faeber JA, Hill DL, Carroll KW, Mollen CJ, et al. Good parent beliefs of parents of seriously ill children. JAMA Pediatr. 2015;169(1):39–47.

    Article  PubMed  PubMed Central  Google Scholar 

  60. Feudtner C, Carroll KW, Hexem KR, Silverman J, Kang T, Kazak AE. Parental hopeful patterns of thinking, emotions and pediatric palliative care decision making. Arch Pediatr Adolesc Med. 2010;164(9):831–9.

    Article  PubMed  Google Scholar 

  61. Gaucher N, Nadeau S, Barbier A, Janvier A, Payot A. Personalized antenatal consultations for preterm labor: responding to mothers’ expectations. J Pediatr. 2016;178:130–4.

    Article  PubMed  Google Scholar 

  62. Payot A, Gendron S, Lefebvre F, Doucet H. Deciding to resuscitate extremely premature babies: how do parents and neonatologists engage in the decision? Soc Sci Med. 2007;64(7):1487–500.

    Article  PubMed  Google Scholar 

  63. Cacciatore J, Thieleman K, Lieber AS, Blood C, Goldman R. The long road to farewell: the needs of families with dying children. Omega (Westport). 2017. https://doi.org/10.1177/0030222817697418. [Epub ahead of print].

    Article  PubMed  Google Scholar 

  64. Quill TE, Abernethy AP. Generalist plus specialist palliative care- creating a more sustainable model. N Engl J Med. 2013;368(13):1173–5.

    Article  CAS  PubMed  Google Scholar 

  65. Janvier A, Meadow W, Leuthner S, Andrews B, Lagatta J, Bos A, Lane L, Verhagen AAE. Whom are we comforting? An analysis of comfort medications delivered to dying neonates. J Pediatr. 2011;159:206–10.

    Article  PubMed  Google Scholar 

  66. Wilkenson D, Crespigny L, Xafis V. Ethical language and decision making for prenatally diagnosed lethal malformations. Semin Fetal Neonatal Med. 2014;19:306–11.

    Article  Google Scholar 

  67. Haward MF, Murphy RO, Lorenz JM. Message framing and neonatal decisions. Pediatrics. 2008;122(1):109–18.

    Article  PubMed  Google Scholar 

  68. Haward MF, Janvier A, Lorenz JM, Fischhoff B. Counseling parents at risk of delivery of an extremely premature infant: differing strategies. AJOB Empir Bioeth. 2017;8(4):243–52.

    Article  PubMed  Google Scholar 

  69. Haward MF, Gaucher N, Payot A, Robson K, Janvier A. Personalized decision making: practical recommendations for antenatal counseling for fragile neonates. Clin Perinatol. 2017;44(2):429–45.

    Article  PubMed  Google Scholar 

  70. Janvier A, Barrington K, Farlow B. Communication with parents concerning withholding or withdrawing of life-sustaining interventions in neonatology. Semin Perinatol. 2014;38(1):38–46.

    Article  PubMed  Google Scholar 

  71. Janvier A, Farlow B, Barrington K. Parental Hopes, Interventions, and Survival of neonates with trisomy 13 and trisomy 18. Am J Med Genet C Semin Med Genet. 2016;172C:279–87.

    Article  Google Scholar 

  72. Currie E, Christian BJ, Hinds PS, Perna SJ, Robinson C, Day S, Meneses K. Parent perspectives of neonatal intensive care at the end-of-life. J Pediatr Nurs. 2016;31:478–89.

    Article  PubMed  Google Scholar 

  73. Brosig CL, Pierucci RL, Kupst MJ, Leuthner SR. Infant end-of-life care: the parents’ perspective. J Perinatol. 2007;27:510–6.

    Article  CAS  PubMed  Google Scholar 

  74. Abraham A, Hendricks MJ. “You can only give warmth to your baby when it’s too late”: parents’ bonding with their extremely preterm and dying child. Qual Health Res. 2017;27(14):2100–15.

    Article  PubMed  Google Scholar 

  75. Cortezza DE, Sanders MR, Brownell EA, Moss K. End-of-life care in the neonatal intensive care unit: experiences of staff and parents. Am J Perinatol. 2015;32:713–72.

    Google Scholar 

  76. Williams C, Cairnie J, Fines V, Patey C, Schwarzer K, Aylward J, et al. Construction of a parent-derived questionnaire to measure end-of-life care after withdrawal of life-sustaining treatment in the neonatal intensive care unit. Pediatrics. 2009;123:e87–95.

    Article  PubMed  Google Scholar 

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Authors and Affiliations

  1. Division of Neonatology, Department of Pediatrics, Albert Einstein College of Medicine, Children’s Hospital at Montefiore, Bronx, NY, USA

    Marlyse F. Haward

  2. Université de Montréal, Montréal, QC, Canada

    Annie Janvier

  3. CHU Sainte-Justine, Montréal, QC, Canada

    Annie Janvier

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  1. Marlyse F. Haward
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  2. Annie Janvier
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Correspondence to Marlyse F. Haward .

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Editors and Affiliations

  1. Department of Health Sciences, George Davies Centre for Medicine, University of Leicester, Leicester, UK

    Elaine M. Boyle

  2. Department of Health Sciences, George Davies Centre for Medicine, University of Leicester, Leicester, UK

    Jonathan Cusack

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Haward, M.F., Janvier, A. (2020). Withholding and Withdrawing Life-Sustaining Treatment. In: Boyle, E., Cusack, J. (eds) Emerging Topics and Controversies in Neonatology. Springer, Cham. https://doi.org/10.1007/978-3-030-28829-7_30

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  • DOI: https://doi.org/10.1007/978-3-030-28829-7_30

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