Skip to main content
SpringerLink
Log in

Care at the End of Life for Children with Cancer

  • Chapter
  • First Online:
Palliative Care in Pediatric Oncology

Part of the book series: Pediatric Oncology ((PEDIATRICO))

Abstract

End of life for children with cancer refers to the closeness of death, and consequently, care at the end of life entails the anticipation of death. Clear medical decisions and best possible symptom control should be in place. Furthermore, clinicians should be prepared to provide anticipatory guidance and to respond to questions that parents may ask including “When will my child die?”; “Will he suffer?”; “What will it be like?”; “What does she need?”; and “How can we be of help?” To assure that a child can die in the family’s preferred location, careful arrangements may need to be made. This chapter will address these end-of-life considerations for children with cancer and their families.

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

Access this chapter

Log in via an institution

Institutional subscriptions

Notes

  1. 1.

    “Child” is used for the whole age group from 0 to18 years if not specified otherwise.

  2. 2.

    All vignettes are based on real patients. Names have been changed to protect the families’ identities.

References

  • Abernethy AP, McDonald CF, Frith PA, Clark K, Herndon JE 2nd, Marcello J et al (2010) Effect of palliative oxygen versus room air in relief of breathlessness in patients with refractory dyspnoea: a double-blind, randomised controlled trial. Lancet 376(9743):784–793

    Article  PubMed  PubMed Central  Google Scholar 

  • Amery J (2016) A really practical handbook of children’s palliative care. Lulu Publishing Services, United States

    Google Scholar 

  • Anghelescu DL, Faughnan LG, Hankins GM, Ward DA, Oakes LL (2011) Methadone use in children and young adults at a cancer center: a retrospective study. J Opioid Manag 7(5):353–361

    PubMed  PubMed Central  Google Scholar 

  • Anghelescu DL, Hamilton H, Faughnan LG, Johnson LM, Baker JN (2012) Pediatric palliative sedation therapy with propofol: recommendations based on experience in children with terminal cancer. J Palliat Med 15(10):1082–1090

    Article  PubMed  PubMed Central  Google Scholar 

  • Anghelescu DL, Snaman JM, Trujillo L, Sykes AD, Yuan Y, Baker JN (2015) Patient-controlled analgesia at the end of life at a pediatric oncology institution. Pediatr Blood Cancer 62(7):1237–1244

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  • Baker JN, Hinds PS, Spunt SL, Barfield RC, Allen C, Powell BC et al (2008) Integration of palliative care practices into the ongoing care of children with cancer: individualized care planning and coordination. Pediatr Clin North Am 55(1):223–250. xii

    Article  PubMed  PubMed Central  Google Scholar 

  • Ballantine N, Daglish EB (2012) Using medications in children. In: Goldman A, Hain R, Liben S (eds) Oxford textbook of palliative care for children, 2nd edn. Oxford University Press, Oxford, pp 178–191

    Chapter  Google Scholar 

  • Ballard CG, O’Brien JT, Reichelt K, Perry EK (2002) Aromatherapy as a safe and effective treatment for the management of agitation in severe dementia: the results of a double-blind, placebo-controlled trial with Melissa. J Clin Psychiatry 63(7):553–558

    Article  PubMed  Google Scholar 

  • Baxter AL, Watcha MF, Baxter WV, Leong T, Wyatt MM (2011) Development and validation of a pictorial nausea rating scale for children. Pediatrics 127(6):e1542–e1549

    Article  PubMed  Google Scholar 

  • Bell CJ, Skiles J, Pradhan K, Champion VL (2010) End-of-life experiences in adolescents dying with cancer. Support Care Cancer 18(7):827–835

    Article  PubMed  Google Scholar 

  • Bent S, Padula A, Moore D, Patterson M, Mehling W (2006) Valerian for sleep: a systematic review and meta-analysis. Am J Med 119(12):1005–1012

    Article  PubMed  PubMed Central  Google Scholar 

  • Benyamin R, Trescot AM, Datta S, Buenaventura R, Adlaka R, Sehgal N et al (2008) Opioid complications and side effects. Pain Physician 11(2 Suppl):S105–S120

    PubMed  Google Scholar 

  • Bishop FL, Prescott P, Chan YK, Saville J, von Elm E, Lewith GT (2010) Prevalence of complementary medicine use in pediatric cancer: a systematic review. Pediatrics 125(4):768–776

    Article  PubMed  Google Scholar 

  • Blinderman CD, Billings JA (2015) Comfort care for patients dying in the hospital. N Engl J Med 373(26):2549–2561

    Article  CAS  PubMed  Google Scholar 

  • Bona K, Bates J, Wolfe J (2011) Massachusetts’ pediatric palliative care network: successful implementation of a novel state-funded pediatric palliative care program. J Palliat Med 14(11):1217–1223

    Article  PubMed  Google Scholar 

  • Bower KA, Mulder GD, Reineke A, Guide SV (2011) Dermatologic conditions and symptom control. In: Wolfe J, Hinds PS, Sourkes BM (eds) Textbook of interdisciplinary pediatric palliative care. Elsevier Saunders, Philadelphia, pp 350–367

    Chapter  Google Scholar 

  • Bredlau AL, Thakur R, Korones DN, Dworkin RH (2013) Ketamine for pain in adults and children with cancer: a systematic review and synthesis of the literature. Pain Med 14(10):1505–1517

    Article  PubMed  Google Scholar 

  • Brook L, Twigg E, Venables A, Shaw C (2012) Respiratory symptoms. In: Goldman A, Hain R, Liben S (eds) Oxford textbook of palliative care for children, 2nd edn. Oxford University Press, Oxford, pp 319–327

    Chapter  Google Scholar 

  • Bruera S, Chisholm G, Dos Santos R, Crovador C, Bruera E, Hui D (2014) Variations in vital signs in the last days of life in patients with advanced cancer. J Pain Symptom Manage 48(4):510–517

    Article  PubMed  PubMed Central  Google Scholar 

  • Burleigh J, Mehta Z, Ellison N (2016) Tunneled Indwelling Catheters for Malignant Ascites #308. J Palliat Med 19(6):671–672

    Article  PubMed  Google Scholar 

  • Burne SR, Dominica F, Baum JD (1984) Helen House—a hospice for children: analysis of the first year. Br Med J (Clin Res Ed) 289(6459):1665–1668

    Article  CAS  Google Scholar 

  • Cancer.Net (2015) Caring for a terminally ill child: a guide for parents. American Society of Clinical Oncology. Available from http://www.cancer.net/navigating-cancer-care/advanced-cancer/caring-terminally-ill-child-guide-parents

  • Charlebois S, Bouchard L (2007) “The worst experience”: the experience of grandparents who have a grandchild with cancer. Can Oncol Nurs J 17(1):26–36

    Article  PubMed  Google Scholar 

  • Chuang C, Fonger E, Roth R, Campbell M (2016) Challenges with accruing a study of topical opioid for painful malignant wounds: lessons learned. J Palliat Med 19(6):586

    Article  PubMed  Google Scholar 

  • Cohen LL, Lemanek K, Blount RL, Dahlquist LM, Lim CS, Palermo TM et al (2008) Evidence-based assessment of pediatric pain. J Pediatr Psychol 33(9):939–955. discussion 56-7

    Article  PubMed  Google Scholar 

  • Committee On Hospital Care and Institute For Patient and Family-Centered Care (2012) Patient- and family-centered care and the pediatrician’s role. Pediatrics 129(2):394–404

    Article  Google Scholar 

  • Davies D (2012) Care in the final hours and days. In: Goldman A, Hain R, Liben S (eds) Oxford textbook of palliative care for children, 2nd edn. Oxford University Press, Oxford, pp 368–374

    Chapter  Google Scholar 

  • Davies D, DeVlaming D, Haines C (2008) Methadone analgesia for children with advanced cancer. Pediatr Blood Cancer 51(3):393–397

    Article  PubMed  Google Scholar 

  • Davies DE, Wren T, MacLachlan SM (2012) Octreotide infusion for malignant duodenal obstruction in a 12-year-old girl with metastatic peripheral nerve sheath tumor. J Pediatr Hematol Oncol 34(7):e292–e294

    Article  PubMed  Google Scholar 

  • Department of Health and Human Services (2008) Update on pediatric postmarketing adverse events Sandostatin LAR (octreotide), NDA 021008. In: Food and Drug Administration (ed). Center of Drug Evaluation and Research

    Google Scholar 

  • Dom HT (2011) The meaning of suffering and death in Hinduism. Eur J Palliat Care 18(4):179–181

    Google Scholar 

  • Drake R, Frost J, Collins JJ (2003) The symptoms of dying children. J Pain Symptom Manage 26(1):594–603

    Article  PubMed  Google Scholar 

  • Dudgeon D, Shadd J (2016) Assessment and management of dyspnea in palliative care [Internet]. UpToDate [cited 18.5.16]. Available from http://www.uptodate.com/contents/assessment-and-management-of-dyspnea-in-palliative-care—H89103965

  • Dussel V, Kreicbergs U, Hilden JM, Watterson J, Moore C, Turner BG et al (2009) Looking beyond where children die: determinants and effects of planning a child’s location of death. J Pain Symptom Manage 37(1):33–43

    Article  PubMed  Google Scholar 

  • Dussel V, Joffe S, Hilden JM, Watterson-Schaeffer J, Weeks JC, Wolfe J (2010) Considerations about hastening death among parents of children who die of cancer. Arch Pediatr Adolesc Med 164(3):231–237

    Article  PubMed  PubMed Central  Google Scholar 

  • Eastern Metropolitan Region Palliative Care Consortium (2016) Management of respiratory secretions in the terminal phase. Available from http://www.emrpcc.org.au

  • Emanuel LL, Alpert HR, Emanuel EE (2001) Concise screening questions for clinical assessments of terminal care: the needs near the end-of-life care screening tool. J Palliat Med 4(4):465–474

    Article  CAS  PubMed  Google Scholar 

  • Ethier AM (2010) Care of the dying child and the family. In: Tomlinson D, Kline N (eds) Pediatric oncology nursing, 2nd edn. Springer, Berlin, Heidelberg, pp 565–578

    Chapter  Google Scholar 

  • European Oncology Nursing Society (2015) Recommendations for the care of patients with malignant fungating wounds [5.6.2016]. Available from http://www.cancernurse.eu/documents/EONSMalignantFungatingWounds.pdf

  • Feudtner C, Feinstein JA, Satchell M, Zhao H, Kang TI (2007) Shifting place of death among children with complex chronic conditions in the United States, 1989–2003. JAMA 297(24):2725–2732

    Article  CAS  PubMed  Google Scholar 

  • Fife A, Postier A, Flood A, Friedrichsdorf SJ (2016) Methadone conversion in infants and children: retrospective cohort study of 199 pediatric inpatients. J Opioid Manag 12(2):123–130

    PubMed  Google Scholar 

  • Finkel JC, Pestieau SR, Quezado ZM (2007) Ketamine as an adjuvant for treatment of cancer pain in children and adolescents. J Pain 8(6):515–521

    Article  CAS  PubMed  Google Scholar 

  • Flavelle SC (2011) Experience of an adolescent living with and dying of cancer. Arch Pediatr Adolesc Med 165(1):28–32

    Article  PubMed  Google Scholar 

  • Foster TL, Lafond DA, Reggio C, Hinds PS (2010) Pediatric palliative care in childhood cancer nursing: from diagnosis to cure or end of life. Semin Oncol Nurs 26(4):205–221

    Article  PubMed  Google Scholar 

  • Fraser LK, Miller M, McKinney PA, Parslow RC, Feltbower RG (2011) Referral to a specialist paediatric palliative care service in oncology patients. Pediatr Blood Cancer 56(4):677–680

    Article  PubMed  Google Scholar 

  • Friedman MM (1998) Family nursing: theory, research and practice, 4th edn, Stamford, Appleton & Lange

    Google Scholar 

  • Friedrichsdorf SJ, Drake R, Webster ML (2011) Gastrointestinal symptoms. In: Wolfe J, Hinds PS, Sourkes BM (eds) Textbook of interdisciplinary pediatric palliative care, 1st edn. Elsevier Saunders, Philadelphia, pp 311–334

    Chapter  Google Scholar 

  • Friedrichsdorf SJ, Postier A, Dreyfus J, Osenga K, Sencer S, Wolfe J (2015) Improved quality of life at end of life related to home-based palliative care in children with cancer. J Palliat Med 18(2):143–150

    Article  PubMed  Google Scholar 

  • Gilrane-McGarry U, O’Grady T (2011) Forgotten grievers: an exploration of the grief experiences of bereaved grandparents. Int J Palliat Nurs 17(4):170–176

    Article  PubMed  Google Scholar 

  • Goldman A, Hewitt M, Collins GS, Childs M, Hain R (2006) Symptoms in children/young people with progressive malignant disease: United Kingdom Children’s Cancer Study Group/Paediatric Oncology Nurses Forum survey. Pediatrics 117(6):e1179–e1186

    Article  PubMed  Google Scholar 

  • Goldsmith M, Ortiz-Rubio P, Staveski S, Chan M, Shaw RJ (2011) Delirium. In: Wolfe J, Hinds PS, Sourkes BM (eds) Textbook of interdisciplinary pediatric palliative care. Elsevier Saunders, Philadelphia, pp 251–265

    Chapter  Google Scholar 

  • Hasan U (2012) Health, sickness, medicine, life and death in Muslim belief and practice. Eur J Palliat Care 19(5):241–245

    Google Scholar 

  • Heath JA, Oh LJ, Clarke NE, Wolfe J (2012) Complementary and alternative medicine use in children with cancer at the end of life. J Palliat Med 15(11):1218–1221

    Article  PubMed  Google Scholar 

  • Hechler T, Blankenburg M, Friedrichsdorf SJ, Garske D, Hubner B, Menke A et al (2008) Parents’ perspective on symptoms, quality of life, characteristics of death and end-of-life decisions for children dying from cancer. Klin Padiatr 220(3):166–174

    Article  CAS  PubMed  Google Scholar 

  • Hedayat K (2006) When the spirit leaves: childhood death, grieving, and bereavement in Islam. J Palliat Med 9(6):1282–1291

    Article  PubMed  Google Scholar 

  • Hewitt M, Goldman A, Collins GS, Childs M, Hain R (2008) Opioid use in palliative care of children and young people with cancer. J Pediatr 152(1):39–44

    Article  CAS  PubMed  Google Scholar 

  • Hexem KR, Mollen CJ, Carroll K, Lanctot DA, Feudtner C (2011) How parents of children receiving pediatric palliative care use religion, spirituality, or life philosophy in tough times. J Palliat Med 14(1):39–44

    Article  PubMed  PubMed Central  Google Scholar 

  • Hilden J (2016) It is time to let in pediatric palliative care. Pediatr Blood Cancer 63(4):583–584

    Article  PubMed  Google Scholar 

  • Himelstein BP, Hilden JM, Boldt AM, Weissman D (2004) Pediatric palliative care. N Engl J Med 350(17):1752–1762

    Article  CAS  PubMed  Google Scholar 

  • Hinds PS, Drew D, Oakes LL, Fouladi M, Spunt SL, Church C et al (2005) End-of-life care preferences of pediatric patients with cancer. J Clin Oncol 23(36):9146–9154

    Article  PubMed  Google Scholar 

  • Hinds PS, Oakes LL, Hicks J, Powell B, Srivastava DK, Spunt SL et al (2009) “Trying to be a good parent” as defined by interviews with parents who made phase I, terminal care, and resuscitation decisions for their children. J Clin Oncol 27(35):5979–5985

    Article  PubMed  PubMed Central  Google Scholar 

  • Hohl CM, Stenekes S, Harlos MS, Shepherd E, McClement S, Chochinov HM (2013) Methotrimeprazine for the management of end-of-life symptoms in infants and children. J Palliat Care 29(3):178–185

    PubMed  Google Scholar 

  • Hooke MC, Grund E, Quammen H, Miller B, McCormick P, Bostrom B (2007) Propofol use in pediatric patients with severe cancer pain at the end of life. J Pediatr Oncol Nurs 24(1):29–34

    Article  PubMed  Google Scholar 

  • Horridge KA (2015) Advance care planning: practicalities, legalities, complexities and controversies. Arch Dis Child 100(4):380–385

    Article  PubMed  Google Scholar 

  • Hunt A (2012) Pain assessment. In: Goldman A, Hain R, Liben S (eds) Oxford textbook of palliative care for children. Oxford University Press, Oxford, pp 204–217

    Chapter  Google Scholar 

  • Hynson JL (2012) The child’s journey: transition from health to ill health. In: Goldman A, Hain R, Liben S (eds) Oxford Textbook of Palliative Care for Children, 2nd edn. Oxford University Press, Oxford, pp 13–22

    Chapter  Google Scholar 

  • Institute of Medicine (2003) Concepts and definitions. In: Field MJ, Behrman RE (eds) When children die improving palliative and end-of-life care for children and their families. The National Academies Press, Washington DC, pp 32–40

    Google Scholar 

  • Jacobs S, Perez J, Cheng YI, Sill A, Wang J, Lyon ME (2015) Adolescent end of life preferences and congruence with their parents’ preferences: results of a survey of adolescents with cancer. Pediatr Blood Cancer 62(4):710–714

    Article  PubMed  Google Scholar 

  • Jalmsell L, Kreicbergs U, Onelov E, Steineck G, Henter JI (2006) Symptoms affecting children with malignancies during the last month of life: a nationwide follow-up. Pediatrics 117(4):1314–1320

    Article  PubMed  Google Scholar 

  • Jalmsell L, Kreicbergs U, Onelov E, Steineck G, Henter JI (2010) Anxiety is contagious-symptoms of anxiety in the terminally ill child affect long-term psychological well-being in bereaved parents. Pediatr Blood Cancer 54(5):751–757

    PubMed  Google Scholar 

  • Jalmsell L, Kontio T, Stein M, Henter JI, Kreicbergs U (2015) On the child’s own initiative: parents communicate with their dying child about death. Death Stud 39(1–5):111–117

    Article  PubMed  Google Scholar 

  • Jalmsell L, Lovgren M, Kreicbergs U, Henter JI, Frost BM (2016) Children with cancer share their views: tell the truth but leave room for hope. Acta Paediatr 105(9):1094–1099

    Article  PubMed  Google Scholar 

  • James PJ, Howard RF, Williams DG (2010) The addition of ketamine to a morphine nurse- or patient-controlled analgesia infusion (PCA/NCA) increases analgesic efficacy in children with mucositis pain. Paediatr Anaesth 20(9):805–811

    Article  PubMed  Google Scholar 

  • Jassal SS (2016) Basic symptom control in paediatric palliative care Bristol 2016 [9.5]. Available from http://www.togetherforshortlives.org.uk

  • Jones R (2011) The meaning of suffering and death in Buddhism. Eur J Palliat Care 18(2):72–75

    Google Scholar 

  • Kamihara J, Nyborn JA, Olcese ME, Nickerson T, Mack JW (2015) Parental hope for children with advanced cancer. Pediatrics 135(5):868–874

    Article  PubMed  Google Scholar 

  • Kars MC, Grypdonck MH, de Bock LC, van Delden JJ (2015) The parents’ ability to attend to the “voice of their child” with incurable cancer during the palliative phase. Health Psychol 34(4):446–452

    Article  PubMed  Google Scholar 

  • Kassam A, Wolfe J (2013) The ambiguities of free-standing pediatric hospices. J Palliat Med 16(7):716–717

    Article  PubMed  Google Scholar 

  • Kassam A, Skiadaresis J, Alexander S, Wolfe J (2014) Parent and clinician preferences for location of end-of-life care: home, hospital or freestanding hospice? Pediatr Blood Cancer 61(5):859–864

    Article  PubMed  Google Scholar 

  • Kassam A, Skiadaresis J, Alexander S, Wolfe J (2015) Differences in end-of-life communication for children with advanced cancer who were referred to a palliative care team. Pediatr Blood Cancer 62(8):1409–1413

    Article  PubMed  Google Scholar 

  • Klick JC, Hauer J (2010) Pediatric palliative care. Curr Probl Pediatr Adolesc Health Care 40(6):120–151

    Article  PubMed  Google Scholar 

  • Klopfenstein KJ, Hutchison C, Clark C, Young D, Ruymann FB (2001) Variables influencing end-of-life care in children and adolescents with cancer. J Pediatr Hematol Oncol 23(8):481–486

    Article  CAS  PubMed  Google Scholar 

  • Knapp CA, Madden VL, Curtis CM, Sloyer PJ, Huang IC, Thompson LA et al (2008) Partners in care: together for kids: Florida’s model of pediatric palliative care. J Palliat Med 11(9):1212–1220

    Article  PubMed  Google Scholar 

  • Kouba E, Wallen EM, Pruthi RS (2008) Management of ureteral obstruction due to advanced malignancy: optimizing therapeutic and palliative outcomes. J Urol 180(2):444–450

    Article  PubMed  Google Scholar 

  • Kreicbergs U, Valdimarsdottir U, Onelov E, Henter JI, Steineck G (2004) Talking about death with children who have severe malignant disease. N Engl J Med 351(12):1175–1186

    Article  CAS  PubMed  Google Scholar 

  • Kreicbergs U, Valdimarsdottir U, Onelov E, Bjork O, Steineck G, Henter JI (2005) Care-related distress: a nationwide study of parents who lost their child to cancer. J Clin Oncol 23(36):9162–9171

    Article  PubMed  Google Scholar 

  • Kreicbergs UC, Lannen P, Onelov E, Wolfe J (2007) Parental grief after losing a child to cancer: impact of professional and social support on long-term outcomes. J Clin Oncol 25(22):3307–3312

    Article  PubMed  Google Scholar 

  • Kuo DZ, Houtrow AJ, Arango P, Kuhlthau KA, Simmons JM, Neff JM (2012) Family-centered care: current applications and future directions in pediatric health care. Matern Child Health J 16(2):297–305

    Article  PubMed  Google Scholar 

  • Kutner JS, Smith MC, Corbin L, Hemphill L, Benton K, Mellis BK et al (2008) Massage therapy versus simple touch to improve pain and mood in patients with advanced cancer: a randomized trial. Ann Intern Med 149(6):369–379

    Article  PubMed  PubMed Central  Google Scholar 

  • Kyle G (2010) Bowel and bladder care at the end of life. Br J Nurs 19(7):408. 10, 12–14

    Article  PubMed  Google Scholar 

  • Lebens S (2009) The meaning of death and dying in Juadism. Eur J Palliat Care 16(5):220–223

    Google Scholar 

  • Levine DR, Johnson LM, Mandrell BN, Yang J, West NK, Hinds PS et al (2015) Does phase 1 trial enrollment preclude quality end-of-life care? Phase 1 trial enrollment and end-of-life care characteristics in children with cancer. Cancer 121(9):1508–1512

    Article  PubMed  Google Scholar 

  • Lewis SJ, Heaton KW (1997) Stool form scale as a useful guide to intestinal transit time. Scand J Gastroenterol 32(9):920–924

    Article  CAS  PubMed  Google Scholar 

  • Lovgren M, Jalmsell L, Eilegard Wallin A, Steineck G, Kreicbergs U (2016) Siblings’ experiences of their brother’s or sister’s cancer death: a nationwide follow-up 2–9 years later. Psychooncology 25(4):435–440

    Article  PubMed  Google Scholar 

  • Mack JW, Hilden JM, Watterson J, Moore C, Turner B, Grier HE et al (2005) Parent and physician perspectives on quality of care at the end of life in children with cancer. J Clin Oncol 23(36):9155–9161

    Article  PubMed  Google Scholar 

  • Mack JW, Joffe S, Hilden JM, Watterson J, Moore C, Weeks JC et al (2008) Parents’ views of cancer-directed therapy for children with no realistic chance for cure. J Clin Oncol 26(29):4759–4764

    Article  PubMed  PubMed Central  Google Scholar 

  • Maltoni M, Scarpi E, Rosati M, Derni S, Fabbri L, Martini F et al (2012) Palliative sedation in end-of-life care and survival: a systematic review. J Clin Oncol 30(12):1378–1383

    Article  PubMed  Google Scholar 

  • Meyers K, Kerr K, Cassel JBC (2014) Up close: a field guide to community-based palliative care in California Sacramento, CA: California Health Care Foundation. Available from http://www.chcf.org/publications/2014/09/up-close-field-guide-palliative

  • Mherekumombe MF, Collins JJ (2015) Patient-controlled analgesia for children at home. J Pain Symptom Manage 49(5):923–927

    Article  PubMed  Google Scholar 

  • Michelson KN, Clayman ML, Haber-Barker N, Ryan C, Rychlik K, Emanuel L et al (2013) The use of family conferences in the pediatric intensive care unit. J Palliat Med 16(12):1595–1601

    Article  PubMed  PubMed Central  Google Scholar 

  • Monterosso L, Kristjanson LJ (2008) Supportive and palliative care needs of families of children who die from cancer: an Australian study. Palliat Med 22(1):59–69

    Article  PubMed  Google Scholar 

  • Montgomery K, Sawin KJ, Hendricks-Ferguson VL (2016) Experiences of pediatric oncology patients and their parents at end of life: a systematic review. J Pediatr Oncol Nurs 33(2):85–104

    Article  PubMed  Google Scholar 

  • Morita T, Tsuneto S, Shima Y (2002) Definition of sedation for symptom relief: a systematic literature review and a proposal of operational criteria. J Pain Symptom Manage 24(4):447–453

    Article  PubMed  Google Scholar 

  • Murray SA, Kendall M, Boyd K, Sheikh A (2005) Illness trajectories and palliative care. BMJ 330(7498):1007–1011

    Article  PubMed  PubMed Central  Google Scholar 

  • Murray SA, Kendall M, Boyd K, Grant L, Highet G, Sheikh A (2010) Archetypal trajectories of social, psychological, and spiritual wellbeing and distress in family care givers of patients with lung cancer: secondary analysis of serial qualitative interviews. BMJ 340:c2581

    Article  PubMed  PubMed Central  Google Scholar 

  • Naipaul AD, Ullrich C (2011) Palliative sedation. In: Wolfe J, Hinds PS, Sourkes BM (eds) Textbook of interdisciplinary pediatric palliative care. Elsevier Saunders, Philadelphia, pp 204–214

    Chapter  Google Scholar 

  • National Center for Complementary and Alternative Medicine (NCCAM) (2016) Complementary, alternative, or integrative health: what’s in a name? Maryland: U.S. Department of Health & Human Services, National Institutes of Helath, USA.gov; [updated March 2015]. Available from https://nccih.nih.gov/health/integrative-health

  • Nitschke R, Humphrey GB, Sexauer CL, Catron B, Wunder S, Jay S (1982) Therapeutic choices made by patients with end-stage cancer. J Pediatr 101(3):471–476

    Article  CAS  PubMed  Google Scholar 

  • Nitschke R, Meyer WH, Sexauer CL, Parkhurst JB, Foster P, Huszti H (2000) Care of terminally ill children with cancer. Med Pediatr Oncol 34(4):268–270

    Article  CAS  PubMed  Google Scholar 

  • Nolan S, Saltmarsh P, Leget C (2011) Spiritual care in palliative care: working towards an EAPC task force. Eur J Palliat Care 18(2):86–89

    Google Scholar 

  • Pousset G, Bilsen J, Cohen J, Addington-Hall J, Miccinesi G, Onwuteaka-Philipsen B et al (2010) Deaths of children occurring at home in six European countries. Child Care Health Dev 36(3):375–384

    Article  CAS  PubMed  Google Scholar 

  • Pousset G, Bilsen J, Cohen J, Mortier F, Deliens L (2011) Continuous deep sedation at the end of life of children in Flanders, Belgium. J Pain Symptom Manage 41(2):449–455

    Article  PubMed  Google Scholar 

  • Pritchard M, Burghen E, Srivastava DK, Okuma J, Anderson L, Powell B et al (2008) Cancer-related symptoms most concerning to parents during the last week and last day of their child’s life. Pediatrics 121(5):e1301–e1309

    Article  PubMed  Google Scholar 

  • Pritchard M, Burghen EA, Gattuso JS, West NK, Gajjar P, Srivastava DK et al (2010) Factors that distinguish symptoms of most concern to parents from other symptoms of dying children. J Pain Symptom Manage 39(4):627–636

    Article  PubMed  PubMed Central  Google Scholar 

  • Puchalski C, Ferrell B, Virani R, Otis-Green S, Baird P, Bull J et al (2009) Improving the quality of spiritual care as a dimension of palliative care: the report of the Consensus Conference. J Palliat Med 12(10):885–904

    Article  PubMed  Google Scholar 

  • Quill TE, Abernethy AP (2013) Generalist plus specialist palliative care—creating a more sustainable model. N Engl J Med 368(13):1173–1175

    Article  CAS  PubMed  Google Scholar 

  • Rajapakse D, Comac M (2012) Symptoms in life-threatening illness: overview and assessment. In: Goldman A, Hain R, Liben S (eds) Oxford textbook of palliative care for children, 2nd edn. Oxford University Press, Oxford, pp 167–177

    Chapter  Google Scholar 

  • Remedios C, Willenberg L, Zordan R, Murphy A, Hessel G, Philip J (2015) A pre-test and post-test study of the physical and psychological effects of out-of-home respite care on caregivers of children with life-threatening conditions. Palliat Med 29(3):223–230

    Article  PubMed  Google Scholar 

  • Rosenberg AR, Wolfe J (2013) Palliative care for adolescents and young adults with cancer. Clin Oncol Adolesc Young Adults 3:41–48

    Google Scholar 

  • Rosenberg AR, Yi-Frazier JP, Wharton C, Gordon K, Jones B (2014) Contributors and inhibitors of resilience among adolescents and young adults with cancer. J Adolesc Young Adult Oncol 3(4):185–193

    Article  PubMed  PubMed Central  Google Scholar 

  • Sanderson A, Hall AM, Wolfe J (2016) Advance care discussions: pediatric clinician preparedness and practices. J Pain Symptom Manage 51(3):520–528

    Article  PubMed  Google Scholar 

  • Schieveld JN, Janssen NJ (2014) Delirium in the pediatric patient: on the growing awareness of its clinical interdisciplinary importance. JAMA Pediatr 168(7):595–596

    Article  PubMed  Google Scholar 

  • Schmidt P, Otto M, Hechler T, Metzing S, Wolfe J, Zernikow B (2013) Did increased availability of pediatric palliative care lead to improved palliative care outcomes in children with cancer? J Palliat Med 16(9):1034–1039

    Article  PubMed  Google Scholar 

  • Sharpe D, Rossiter L (2002) Siblings of children with a chronic illness: a meta-analysis. J Pediatr Psychol 27(8):699–710

    Article  PubMed  Google Scholar 

  • Siden H, Miller M, Straatman L, Omesi L, Tucker T, Collins JJ (2008) A report on location of death in paediatric palliative care between home, hospice and hospital. Palliat Med 22(7):831–834

    Article  CAS  PubMed  Google Scholar 

  • Spicer S, Macdonald ME, Davies D, Vadeboncoeur C, Siden H (2015) Introducing a lexicon of terms for paediatric palliative care. Paediatr Child Health 20(3):155–156

    Article  PubMed  PubMed Central  Google Scholar 

  • Stoddard FJ, Usher CT, Abrams AN (2006) Psychopharmacology in pediatric critical care. Child Adolesc Psychiatr Clin N Am 15(3):611–655

    Article  PubMed  Google Scholar 

  • Theunissen JM, Hoogerbrugge PM, van Achterberg T, Prins JB, Vernooij-Dassen MJ, van den Ende CH (2007) Symptoms in the palliative phase of children with cancer. Pediatr Blood Cancer 49(2):160–165

    Article  CAS  PubMed  Google Scholar 

  • Thompson A, MacDonald A, Holden C (2012) Feeding in palliative care. In: Goldman A, Hain R, Liben S (eds) Oxford textbood of palliative care for children, 2nd edn. Oxford University Press, Oxford, pp 284–294

    Chapter  Google Scholar 

  • Together for short lives (2016) Introduction to children’s palliative care. Definitions. Available from http://www.togetherforshortlives.org.uk

  • Tsai E (2008) Advance care planning for paediatric patients. Paediatr Child Health 13(9):791–805

    Article  Google Scholar 

  • Ullrich CK, Dussel V, Hilden JM, Sheaffer JW, Moore CL, Berde CB et al (2010) Fatigue in children with cancer at the end of life. J Pain Symptom Manage 40(4):483–494

    Article  PubMed  Google Scholar 

  • Vermaes IP, van Susante AM, van Bakel HJ (2012) Psychological functioning of siblings in families of children with chronic health conditions: a meta-analysis. J Pediatr Psychol 37(2):166–184

    Article  PubMed  Google Scholar 

  • Vickers J, Chrastek J (2012) Place of care. In: Goldman A, Hain R, Liben S (eds) Oxford textbook of palliative care for children, 2nd edn. Oxford University Press, Oxford, pp 391–401

    Chapter  Google Scholar 

  • Vickers J, Thompson A, Collins GS, Childs M, Hain R (2007) Place and provision of palliative care for children with progressive cancer: a study by the Paediatric Oncology Nurses’ Forum/United Kingdom Children’s Cancer Study Group Palliative Care Working Group. J Clin Oncol 25(28):4472–4476

    Article  PubMed  Google Scholar 

  • Wakefield CE, Drew D, Ellis SJ, Doolan EL, McLoone JK, Cohn RJ (2014) ‘What they’re not telling you’: a new scale to measure grandparents’ information needs when their grandchild has cancer. Patient Educ Couns 94(3):351–355

    Article  PubMed  Google Scholar 

  • Watanabe H, Inoue Y, Uchida K, Okugawa Y, Hiro J, Ojima E et al (2007) Octreotide improved the quality of life in a child with malignant bowel obstruction caused by peritoneal dissemination of colon cancer. J Pediatr Surg 42(1):259–260

    Article  PubMed  Google Scholar 

  • Wein S, Pery S, Zer A (2010) Role of palliative care in adolescent and young adult oncology. J Clin Oncol 28(32):4819–4824

    Article  PubMed  Google Scholar 

  • Widger K, Tourangeau AE, Steele R, Streiner DL (2015) Initial development and psychometric testing of an instrument to measure the quality of children’s end-of-life care. BMC Palliat Care 14(1):1

    Article  PubMed  PubMed Central  Google Scholar 

  • Wilson RK, Weissman DE (2004) Neuroexcitatory effects of opioids: patient assessment #57. J Palliat Med 7(4):579

    Article  PubMed  Google Scholar 

  • Wilson P, White A, d’Etremont S (2014) Guidelines for home transfusion: Nova Scotia Provincial Blood Coordinating Program. Available from http://novascotia.ca/dhw/nspbcp/docs/Home-Transfusion-Guideline.pdf

  • Wolfe J, Grier HE, Klar N, Levin SB, Ellenbogen JM, Salem-Schatz S et al (2000) Symptoms and suffering at the end of life in children with cancer. N Engl J Med 342(5):326–333

    Article  CAS  PubMed  Google Scholar 

  • Wolfe J, Hammel JF, Edwards KE, Duncan J, Comeau M, Breyer J et al (2008) Easing of suffering in children with cancer at the end of life: is care changing? J Clin Oncol 26(10):1717–1723

    Article  PubMed  Google Scholar 

  • Wolfe J, Hinds PS, Sourkes BM (2011) The language of pediatric interdisciplinary palliative care. In: Wolfe J, Hinds PS, Sourkes BM (eds) Textbook of Interdisciplinary Pediatric Palliative Care. Elsevier Saunders, Philadelphia, pp 3–6

    Chapter  Google Scholar 

  • Wolfe J, Orellana L, Ullrich C, Cook EF, Kang TI, Rosenberg A et al (2015) symptoms and distress in children with advanced cancer: prospective patient-reported outcomes from the PediQUEST study. J Clin Oncol 33(17):1928–1935

    Article  PubMed  PubMed Central  Google Scholar 

  • World Health Organization (2012) WHO guidelines on the pharmacological treatment of persisting pain in children with medical illness. Available from http://apps.who.int/iris/bitstream/10665/44540/1/9789241548120_Guidelines.pdf

  • Wright LM, Bell JM (2009) Beliefs and illness: a model for healing. 4th Floor Press Inc., Canada

    Google Scholar 

  • Wright LM, Leahey M (2005) Nurses and families: a guide to family assessment and intervention, 4th edn. F.A. Davis Company, Philadelphia

    Google Scholar 

  • Youngblut JM, Brooten D, Blais K, Hannan J, Niyonsenga T (2010) Grandparent’s health and functioning after a grandchild’s death. J Pediatr Nurs 25(5):352–359

    Article  PubMed  Google Scholar 

  • Zernikow B, Michel E, Craig F, Anderson BJ (2009) Pediatric palliative care: use of opioids for the management of pain. Paediatr Drugs 11(2):129–151

    Article  PubMed  Google Scholar 

  • Zimmermann K, Cignacco E, Eskola K, Engberg S, Ramelet AS, Von der Weid N et al (2015) 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 71(12):3006–3017

    Article  PubMed  Google Scholar 

Download references

Author information

Authors and Affiliations

  1. University-Children’s Hospital Zurich—Eleonore Foundation, Steinwiesstrasse 75, CH-8032, Zurich, Switzerland

    Eva Bergstraesser M.D., M.Sc. & Maria Flury

Authors
  1. Eva Bergstraesser M.D., M.Sc.
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. Maria Flury
    View author publications

    You can also search for this author in PubMed Google Scholar

Corresponding author

Correspondence to Eva Bergstraesser M.D., M.Sc. .

Editor information

Editors and Affiliations

  1. Department of Psychosocial Oncology, Dana-Farber Cancer Institute, Boston, Massachusetts, USA

    Joanne Wolfe

  2. School of Social Work, The University of Texas, Austin, Texas, USA

    Barbara L. Jones

  3. Department of Caring Sciences, Palliative Research Centre, Stockholm, Sweden

    Ulrika Kreicbergs

  4. Hospital san Gerardo, University of Milano, Monza, Italy

    Momcilo Jankovic

Rights and permissions

Reprints and permissions

Copyright information

© 2018 Springer International Publishing AG

About this chapter

Check for updates. Verify currency and authenticity via CrossMark

Cite this chapter

Bergstraesser, E., Flury, M. (2018). Care at the End of Life for Children with Cancer. In: Wolfe, J., Jones, B., Kreicbergs, U., Jankovic, M. (eds) Palliative Care in Pediatric Oncology. Pediatric Oncology. Springer, Cham. https://doi.org/10.1007/978-3-319-61391-8_11

Download citation

  • DOI: https://doi.org/10.1007/978-3-319-61391-8_11

  • Published:

  • Publisher Name: Springer, Cham

  • Print ISBN: 978-3-319-61390-1

  • Online ISBN: 978-3-319-61391-8

  • eBook Packages: MedicineMedicine (R0)

Publish with us

Policies and ethics

Search

Navigation