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Palliative Care of Pediatric Populations

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Textbook of Palliative Care

Abstract

Pediatric palliative care clinicians care for children with life-limiting illnesses – ranging from the unborn child through to young adulthood. It is a unique specialty that shares some concepts with adult palliative care but also important differences. The range of diagnoses, illness trajectories, and prognoses are very different to the diseases of adults. In addition, children are developing with changes in cognition, psychological and emotional maturity, spiritual and cultural influences, and behavior. The evolving roles of the child and family through illness, end-of-life care, death, and bereavement also influence palliative care provision.

Multidisciplinary pediatric teams provide family-centered care, in the setting of the child and family’s choice. Core responsibilities include symptom management, psychological and emotional care, advocacy, and spiritual and cultural care. Advance care planning and decision-making are fluid processes that require attention to the child’s level of understanding, capacity to make decision, his/her role in the family, parental views, and the child’s condition.

Due to a low prevalence compared with adult patients, geographical distance, and resourcing limitations, not all children with palliative care needs will have access to a specialist pediatric palliative care team. Care can be provided by general pediatric and adult palliative care teams working together and complimenting each other’s skill sets where there is an absence of a specialist pediatric palliative care team.

Research in this area is in a phase of development. Ethical considerations of conducting research in children and with families who are considered vulnerable make study design and recruiting challenging. However, there is a great need for evidence to enable high-quality palliative care provision in this population.

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References

  • American Academy of Pediatrics Committee on Bioethics. Palliative care for children. Pediatrics. 2000;106(2):351–7.

    Article  Google Scholar 

  • Anderson BJ, Meakin GH. Scaling for size: some implications for paediatric anaesthesia dosing. Pediatr Anesth. 2002;12(3):205–19.

    Article  Google Scholar 

  • A guide to the development of children’s palliative care services. Report of a joint working party of the Royal College of Paediatrics and Child Health and the Association for Chidlren with Life-threatening or Terminal Conditions and their Families. London: RCPCH; 1997

    Google Scholar 

  • Bluebond-Langner M, DeCicco A, Belasco J. Involving children with life-shortening illnesses in decisions about participation in clinical research: a proposal for shuttle diplomacy and negotiation. In: Kodish E, editor. Ethics and research with children. New York: Oxford University Press; 2005. p. 323–44.

    Google Scholar 

  • Bradford N, Herbert A, Mott C, Armfield N, Young J, Smith A. Components and principles of a pediatric palliative care consultation: results of a Delphi study. J Palliat Med. 2014;17(11):1206–13.

    Article  Google Scholar 

  • Breau LM, McGrath PJ, Camfield CS, Finley GA. Psychometric properties of the non-communicating children’s pain checklist-revised. Pain. 2002;99(1):349–57.

    Article  Google Scholar 

  • Brook L, Hain R. Predicting death in children. Arch Dis Child. 2008;93(12):1067–70.

    Article  CAS  Google Scholar 

  • Chang E, MacLeod R, Drake R. Characteristics influencing location of death for children with life-limiting illness. Arch Dis Child. 2013;98(6):419–24.

    Article  Google Scholar 

  • Cochrane H, Liynage S, Nantanmbi R. Palliative care statistics for children and young adults: health and care partnerships analysis. London: Department of Health; 2007.

    Google Scholar 

  • Craig F, Abu-Saad Huijer H, Benini F, Kuttner L, Wood C, Feraris P, Zernikow B, Steering Committee of the EAPC task force on palliative care for children and adolescents. IMPaCCT: standards for paediatric palliative care in Europe. Eur J Palliat Care. 2007;14:109–14.

    Google Scholar 

  • Crocker JC, Beecham E, Kelly P, Dinsdale AP, Hemsley J, Jones L, Bluebond-Langner M. Inviting parents to take part in paediatric palliative care research: a mixed-methods examination of selection bias. Palliat Med. 2014;29:231. https://doi.org/10.1177/0269216314560803.

    Article  PubMed  Google Scholar 

  • Day E, Jones L, Langner R, Bluebond-Langner M. Current understanding of decision-making in adolescents with cancer: a narrative systematic review. Palliat Med. 2016;30(10):920–34.

    Article  Google Scholar 

  • Dingfield L, Bender L, Harris P, Newport K, Hoover-Regan M, Feudtner C, Clifford S, Casarett D. Comparison of pediatric and adult hospice patients using electronic medical record data from nine hospices in the United States, 2008–2012. J Palliat Med. 2015;18(2):120–6.

    Article  Google Scholar 

  • Feudtner C. Collaborative communication in pediatric palliative care: a foundation for problem-solving and decision-making. Pediatr Clin N Am. 2007;54(5):583–607.

    Article  Google Scholar 

  • Feudtner C, Silveira MJ, Christakis DA. Where do children with complex chronic conditions die? Patterns in Washington state, 1980–1998. Pediatrics. 2002;109(4):656–60.

    Article  Google Scholar 

  • Feudtner C, Kang TI, Hexem KR, Friedrichsdorf SJ, Osenga K, Siden H, Friebert SE, Hays RM, Dussel V, Wolfe J. Pediatric palliative care patients: a prospective multicenter cohort study. Pediatrics. 2011;127(6):1094–101.

    Article  Google Scholar 

  • Fraser LK, Miller M, Hain R, Norman P, Aldridge J, McKinney PA, Parslow RC. Rising national prevalence of life-limiting conditions in children in England. Pediatrics. 2012;129(4):e923–9.

    Article  Google Scholar 

  • Fraser L, Miller M, Aldridge J, McKinney PA, Parslow RC. Prevalence of life-limiting and life-threatening conditions in young adults in England 2000–2010. Palliat Med. 2014;28:513–20.

    Article  Google Scholar 

  • Gatrad A, Sheikh A. Medical ethics and Islam: principles and practice. Arch Dis Child. 2001;84(1):72–5.

    Article  CAS  Google Scholar 

  • Hain RD. Morphine and morphine-6-glucuronide in the plasma and cerebrospinal fluid of children. Br J Clin Pharmacol. 1999;48(1):37–42.

    Article  CAS  Google Scholar 

  • Hunt A, Joel S, Dick G, Goldman A. Population pharmacokinetics of oral morphine and its glucuronides in children receiving morphine as immediate-release liquid or sustained-release tablets for cancer pain. J Pediatr. 1999;135(1):47–55.

    Article  CAS  Google Scholar 

  • Hunt A, Goldman A, Seers K, Crichton N, Mastroyannopoulou K, Moffat V, Oulton K, Brady M. Clinical validation of the paediatric pain profile. Dev Med Child Neurol. 2004;46(01):9–18.

    Article  Google Scholar 

  • Hynson JL, Gillis J, Collins JJ, Irving H, Trethewie SJ. The dying child: how is care different? Med J Aust. 2003;179(6):S20.

    PubMed  Google Scholar 

  • Jacobs S, Perez J, Cheng YI, Sill A, Wang J, Lyon ME. Adolescent end of life preferences and congruence with their parents’ preferences: results of a survey of adolescents with cancer. Pediatr Blood Cancer. 2015;62(4):710–4.

    Article  Google Scholar 

  • Knapp C, Madden V, Fowler-Kerry S. Pediatric palliative care: global perspectives. Dordrecht: Springer; 2012.

    Google Scholar 

  • Malviya S, VOEPEL-LEWIS T, Burke C, Merkel S, Tait AR. The revised FLACC observational pain tool: improved reliability and validity for pain assessment in children with cognitive impairment. Pediatr Anesth. 2006;16(3):258–65.

    Article  Google Scholar 

  • McGrath PA. Development of the World Health Organization guidelines on cancer pain relief and palliative care in children. J Pain Symptom Manag. 1996;12(2):87–92.

    Article  CAS  Google Scholar 

  • Olcese ME, Mack JW. Research participation experiences of parents of children with cancer who were asked about their child’s prognosis. J Palliat Med. 2012;15(3):269–73.

    Article  Google Scholar 

  • Royal College of Paediatrics and Child Health. Withholding and Withdrawing life saving treatment in children: A framework for practice. 2nd edn. London: RCPCH; 2004

    Google Scholar 

  • Sepúlveda C, Marlin A, Yoshida T, Ullrich A. Palliative care: the World Health Organization’s global perspective. J Pain Symptom Manag. 2002;24(2):91–6.

    Article  Google Scholar 

  • Serwint JR, Nellis ME. Deaths of pediatric patients: relevance to their medical home, an urban primary care clinic. Pediatrics. 2005;115(1):57–63.

    Article  Google Scholar 

  • Siden H, Miller M, Straatman L, Omesi L, Tucker T, Collins J. A report on location of death in paediatric palliative care between home, hospice and hospital. Palliat Med. 2008;22(7):831–4.

    Article  CAS  Google Scholar 

  • Steele R, Bosma H, Johnston MF, Cadell S, Davies B, Siden H, Straatman L. Research priorities in pediatric palliative care: a Delphi study. J Palliat Care. 2008;24(4):229.

    Article  Google Scholar 

  • Stevens B, Johnston C, Petryshen P, Taddio A. Premature infant pain profile: development and initial validation. Clin J Pain. 1996;12(1):13–22.

    Article  CAS  Google Scholar 

  • Ullrich C, Morrison SAE, Sean R. Pediatric palliative care research comes of age: what we stand to learn from children with life-threatening illness. J Palliat Med. 2013;16(4):334–6.

    Article  Google Scholar 

  • Voepel-Lewis T, Shayevitz JR, Malviya S. The FLACC: a behavioral scale for scoring postoperative pain in young children. Pediatr Nurs. 1997;23:293–7.

    PubMed  Google Scholar 

  • Wang CH, Finkel RS, Bertini ES, Schroth M, Simonds A, Wong B, Aloysius A, Morrison L, Main M, Crawford TO. Consensus statement for standard of care in spinal muscular atrophy. J Child Neurol. 2007;22(8):1027–49.

    Article  Google Scholar 

  • Wood F, Simpson S, Barnes E, Hain R. Disease trajectories and ACT/RCPCH categories in paediatric palliative care. Palliat Med. 2010;24(8):796–806.

    Article  Google Scholar 

  • Xafis V, Gillam L, Hynson J, Sullivan J, Cossich M, Wilkinson D. Caring decisions: the development of a written resource for parents facing end-of-life decisions. J Palliat Med. 2015;18(11):945–55.

    Article  Google Scholar 

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Author information

Authors and Affiliations

  1. Starship specialist paediatric palliative care service, Auckland City Hospital, Auckland, New Zealand

    Ross Drake & Emily Chang

Authors
  1. Ross Drake
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  2. Emily Chang
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Corresponding author

Correspondence to Ross Drake .

Editor information

Editors and Affiliations

  1. School of Medicine,Palliative Care, HammondCare, The University of Sydney School of Medicine, Sydney, Australia

    Roderick Duncan MacLeod

  2. VUB-UGhent End-of-Life Care Research Group, Department of Family Medicine and Chronic Care and Department of Clinical Sciences, Vrije Universiteit Brussel (VUB), Brussels, Belgium

    Lieve Van den Block

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Drake, R., Chang, E. (2019). Palliative Care of Pediatric Populations. In: MacLeod, R., Van den Block, L. (eds) Textbook of Palliative Care. Springer, Cham. https://doi.org/10.1007/978-3-319-77740-5_67

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