Skip to main content

Pediatric Cancer and End-of-Life

  • Chapter
  • First Online:
Dying and Death in Oncology

Abstract

Children continue to die from cancer. Despite the decline in mortality, pediatric cancer remains the leading cause of death from disease in children ages 1–14, exceeded only by accidental death. Childhood deaths due to cancer represent 58 % of disease-related deaths, outnumbering all other causes of death by disease combined (Curesearch 2015). The death of a child affects many individuals. In addition to the child’s parents and siblings, other family members such as grandparents, cousins and aunts and uncles may be devastated by the child’s death. Friends, teachers, coaches, spiritual leaders, doctors and nurses also experience grief and bereavement when a child dies. Several topics may aid in addressing the needs of various stakeholders including the dying child, parents, siblings, grandparents and a host of community members. In addition, the developmental level of the dying child, the siblings and friends is imperative to include in developing a plan of how to best support some of the key stakeholders. The pain of a child’s death cannot be denied. However, those who are feeling the loss can be best supported by employing some of the strategies included in this writing.

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

Access this chapter

Chapter
USD 29.95
Price excludes VAT (USA)
  • Available as PDF
  • Read on any device
  • Instant download
  • Own it forever
eBook
USD 39.99
Price excludes VAT (USA)
  • Available as EPUB and PDF
  • Read on any device
  • Instant download
  • Own it forever
Softcover Book
USD 54.99
Price excludes VAT (USA)
  • Compact, lightweight edition
  • Dispatched in 3 to 5 business days
  • Free shipping worldwide - see info
Hardcover Book
USD 54.99
Price excludes VAT (USA)
  • Durable hardcover edition
  • Dispatched in 3 to 5 business days
  • Free shipping worldwide - see info

Tax calculation will be finalised at checkout

Purchases are for personal use only

Institutional subscriptions

References

  • Adler NE, Page AEK (eds) (2008) Cancer care for the whole patient: Meeting psychosocial health needs. Institute of Medicine (US) Committee on the Psychosocial Services to Cancer Patients/Families in a Community Setting. National Academies Press (US). Institute of Medicine, Washington, DC

    Google Scholar 

  • Alderfer MA, Hodges J (2010) Supporting siblings of children with cancer: a need for family-school partnerships. School Ment Health 2(2):72–81

    Article  PubMed  PubMed Central  Google Scholar 

  • Alderfer MA, Labay LE, Kazak A (2004) Brief report: does posttraumatic stress apply to siblings of childhood cancer survivors? J Pediatr Psychol 28(4):281–286

    Article  Google Scholar 

  • American Academy of Pediatrics, Section on Hospice and Palliative Medicine and Committee on Hospital Care. Policy Statement. Pediatric Palliative Care and Hospice Commitments, Guidelines, and Recommendations. http://pediatrics.aappublications.org/content/pediatrics/132/5/966.full.pdf. Accessed 15 Feb 2016

  • American Cancer Society (2015) Cancer facts and figures 2015. American Cancer Society, http://www.cancer.org/research/cancerfactsstatistics/cancerfactsfigures2015/. Accessed 14 May 2016

  • Ameringer S (2009) Barriers to pain management among adolescents with cancer. Pain Manag Nurs 11(4):224–233

    Article  PubMed  PubMed Central  Google Scholar 

  • Ameringer S, Serlin RC, Hughes SH, Frierdich SA, Ward S (2006) Concerns about pain management among adolescents with cancer: developing the Adolescent Barriers Questionnaire. J Pediatr Oncol Nurs 23(4):220–232

    Article  PubMed  Google Scholar 

  • Cadell S, Kennedy K, Hemsworth DJ (2012) Informing social work practice through research with parent caregivers of a child with a life-limiting illness. Soc Work End Life Palliat Care 8(4):356–381

    Article  Google Scholar 

  • Calhoun LG, Tedeschi RG (2004) The foundations of posttraumatic growth: new considerations. Psychol Inquiry 15:93–102

    Article  Google Scholar 

  • Carlson LE, Waller A, Mitchell AJ (2012) Screening for distress and unmet needs in patients with cancer: review and recommendations. J Clin Oncol 30:1160–1177

    Article  PubMed  Google Scholar 

  • Collins JJ, Byrnes ME, Dunkel IJ, Lapin J, Nadel T, Thaler HT, Polyak T, Rapkin B, Portenoy RK (2000) The measurement of symptoms in children with cancer. J Pain Symptom Manage 19(5):363–377

    Article  CAS  PubMed  Google Scholar 

  • Curesearch (2015) Childhood cancer deaths per year. CureSearch for Children’s Cancer, http://curesearch.org/Childhood-Cancer-Deaths-Per-Year. Accessed 14 May 2016

  • Dickens N (2014) Prevalence of complicated grief and posttraumatic stress disorder in children and adolescents following sibling death. Fam J Counsel Ther Couples Fam 22:119–126

    Google Scholar 

  • Disraeli B (1833) The Wondrous Tale of Alroy, the Rise of Iskander (Saunders and Otley, London), Part 10, Chapter 3. Accessed at http://www.rc.umd.edu/editions/alroy/novel/p10c3.html. 12 May 2016

  • Eilegård A, Steineck G, Nyberg T, Kreicbergs U (2013) Psychological health in siblings who lost a brother or sister to cancer 2 to 9 years earlier. Psychooncology 22(3):683–691

    Article  PubMed  Google Scholar 

  • Eilertsen ME, Eilegård A, Steineck G, Nyberg T, Kreicbergs UJ (2013) Impact of social support on bereaved siblings’ anxiety: a nationwide follow-up. Pediatr Oncol Nurs 30(6):301–310

    Article  Google Scholar 

  • EPEC (2016) Education in Palliative and End-of-Life Care. Accessed on January 13, 2016 at http://www.epec.net/

  • Falkenburg JL, Tibboel D, Ganzevoort RR, Gischler S, Hagoort J, van Dijk M (2016) Parental physical proximity in end-of-life care in the PICU. Pediatr Crit Care Med. Accessed 27 Feb 2016 [Epub ahead of print] http://www-ncbi-nlm-nih-gov.proxy.kumc.edu:2048/pubmed/?term=Falkenburg+JL%2C+Tibboel+D%2C+Ganzevoort+RR%2C+Gischler+S%2C+Hagoort+J%2C+van+Dijk+M+(2016)+Parental+physical+proximity+in+end-oflife+care+in+the+PICU.+Pediatr+Crit+Care+Med.+Accessed+27+Feb+2016+%5BEpub+ahead+of+print%5D

  • Ferris FD, Bruera E, Cherny N, Cummings C, Currow D, Dudgeon D, JanJan N, Strasser F, von Gunten CF, Von RoennAm JH (2009) Palliative cancer care a decade later: accomplishments, the need, next steps—from the American society of clinical oncology. J Clin Oncol 27(18):3052–3058

    Article  PubMed  Google Scholar 

  • Feudtner C, Walter JK, Faerber JA, Hill DL, Carroll KW, Mollen CJ, Miller VA, Morrison WE, Munson D, Kang TI, Hinds PS (2015) Good-parent beliefs of parents of seriously ill children. AMA Pediatr 169(1):39–47

    Google Scholar 

  • Finlay F, Lewis M, Lenton S, Poon M (2008) Planning for the end of children’s lives – the lifetime framework. Child Care Health Dev 34:542–544

    Article  CAS  PubMed  Google Scholar 

  • Fortier MA, Wahi A, Bruce C, Maurer EL, Stevenson R (2012) Pain management at home in children with cancer: a daily diary study. Pediatr Blood Cancer 61(6):1029–1033

    Article  Google Scholar 

  • Foster TL, Gilmer MJ, Vannatta K, Barrera M, Davies B, Dietrich MS, Fairclough DL, Gerhardt CA (2012) Changes in siblings after the death of a child from cancer. Cancer Nurs 35(5):347–354

    Article  PubMed  PubMed Central  Google Scholar 

  • Friebert S (2009) NHPCO facts and figures: pediatric palliative and hospice care in America. National Hospice and Palliative Care Organization, Alexandria

    Google Scholar 

  • Gerhardt CA, Lehmann V, Long KA, Alderfer MA (2015) Supporting siblings as a standard of care in pediatric o(ncology. Pediatr Blood Cancer 62(Suppl 5):S750–S804

    Article  PubMed  Google Scholar 

  • Giovanola J (2005) Sibling involvement at the end of life. J Pediatr Oncol Nurs 22(4):222–226

    Article  PubMed  Google Scholar 

  • Gordon DB, Dahl JL, Miaskowski C, McCarberg B, Todd KH, Paice JA, Lipman AG, Bookbinder M, Sanders SH, Turk DC, Carr DB (2005) American pain society recommendations for improving the quality of acute and cancer pain management: American Pain Society Quality of Care Task Force. Arch Intern Med 165(14):1574–1580

    Article  PubMed  Google Scholar 

  • Granek L, Barrera M, Scheinemann K, Bartels U (2016) Pediatric oncologists’ coping strategies for dealing with patient death. J Psychosoc Oncol 34(1-2):39–59

    Article  PubMed  Google Scholar 

  • Heath JA, Clarke NE, Donath SM, McCarthy M, Anderson VA, Wolfe J (2010) Symptoms and suffering at the end of life in children with cancer: an Australian perspective. Med J Aust 192(2):71–75

    PubMed  Google Scholar 

  • Heinze KE, Nolan MT (2012) Parental decision making for children with cancer at the end of life: a meta-ethnography. J Pediatr Oncol Nurs 29(6):337–345

    Article  PubMed  Google Scholar 

  • Hilden JM, Emanuel EJ, Fairclough DL, Link MP, Foley KM, Clarridge BC, Schnipper LE, Mayer RJ (2001) Attitudes and practices among pediatric oncologists regarding end-of-life care: results of the 1998 American Society of Clinical Oncology survey. J Clin Oncol 19(1):205–212

    CAS  PubMed  Google Scholar 

  • Hinds PS, Brandon J, Allen C, Hijiya N, Newsome R, Kane JR (2007) Patient-reported outcomes in end-of-life research in pediatric oncology. J Pediatr Psychol 32(9):1079–1088

    Article  PubMed  Google Scholar 

  • Hinds PS (1997) Revising theories on adolescent development through observations by nurses. J Pediatr Oncol Nurs 14(1):1–2

    Article  CAS  PubMed  Google Scholar 

  • International Children’s Palliative Care Network (ICPCN) End-of-life planning, http://www.icpcn.org/resources-for-end-of-life-planning-and-care/. Accessed 12 Dec 2015

  • Jacobsen PB, Wagner LI (2012) A new quality standard: the integration of psychosocial care into routine cancer care. J Clin Oncol 30:1154–1159

    Article  PubMed  Google Scholar 

  • Jones B (2012) The challenge of quality care for family care-givers in pediatric cancer care. Semin Oncol Nurs 28(4):213–220

    Article  PubMed  Google Scholar 

  • Jones BL, Contro N, Koch KD (2014) The duty of the physician to care for the family in pediatric palliative care: context, communication, and caring. Pediatrics 133(Suppl 1):S8–S15

    Article  PubMed  Google Scholar 

  • Kacel E, Gao X, Prigerson HG (2011) Understanding bereavement: what every oncology practitioner should know. J Support Oncol 9(5):172–178

    Article  PubMed  PubMed Central  Google Scholar 

  • Kars MC, Grypdonck MH, van Delden JJ (2011) Being a parent of a child with cancer throughout the end-of-life course. Oncol Nurs Forum 38(4):E260–E271

    Article  PubMed  Google Scholar 

  • Kazak AF, Abrams AN, Banks J, Christofferson J, DiDonato S, Grootenhuis MA, Kabour M, Madan-Swain A, Patel SK, Zadeh S, Kupst MJ (2015) Psychosocial assessment as a standard of care in pediatric cancer. Pediatr Blood Cancer 62(Suppl 5):S426–S459

    Article  PubMed  Google Scholar 

  • Kreicbergs U, Valdimarsdóttir U, Onelöv E, Henter JI, Steineck G (2004) Anxiety and depression in parents 4-9 years after the loss of a child owing to a malignancy: a population-based follow-up. Psychol Med 34(8):1431–1441

    Article  PubMed  Google Scholar 

  • Lee V, Cohen SR, Edgar L, Laizner AM, Gagnon AJ (2006) Meaning-making and psychological adjustment to cancer; development of an intervention and pilot results. Oncol Nurs Forum 33(2):291–302

    Article  PubMed  Google Scholar 

  • Lichtenthal WG, Sweeney CR, Roberts KE, Corner GW, Donovan LA, Prigerson HG, Wiener L (2015) Bereavement follow-up after the death of a child as a standard of care in pediatric oncology. Pediatr Blood Cancer 62(Suppl 5):S834–S869

    Article  PubMed  Google Scholar 

  • Lotz JD, Jox RJ, Borasio GD, Führer M (2014) Pediatric advance care planning from the perspective of health care professionals: a qualitative interview study. Palliat Med 29(3):212–222

    Article  PubMed  Google Scholar 

  • Lyon ME, Jacobs S, Briggs L, Cheng YI, Wang J (2009) A longitudinal, randomized, controlled trial of advance care planning for teens with cancer: anxiety, depression, quality of life, advance directives, spirituality. J Adolesc Health 54(6):710–717

    Article  Google Scholar 

  • Lyon ME, Jacobs S, Briggs L, Cheng YI, Wang J (2013) Family-centered advance care planning for teens with cancer. JAMA Pediatr 167(5):460–467

    Article  PubMed  Google Scholar 

  • Lyon ME, McCabe MA, Patel KM, D’Angelo LJ (2004) What do adolescents want? An exploratory study regarding end-of-life decision-making. J Adolesc Health 35(6):529.e1–6

    Article  Google Scholar 

  • Machajewski V, Kronk R (2013) Childhood grief related to the death of a sibling. J Nurse Practitioners 9:443–448

    Article  Google Scholar 

  • Meert KL, Eggly S, Pollack M, Anand KJ, Zimmerman J, Carcillo J, Newth CJ, Dean JM, Willson DF, Nicholson C (2008) Parents’ perspectives on physician-parent communication near the time of a child’s death in the pediatric intensive care unit. National Institute of Child Health and Human Development Collaborative Pediatric Critical Care Research Network. Pediatr Crit Care Med 9(1):2–7

    Article  PubMed  PubMed Central  Google Scholar 

  • Meert KL, Templin TN, Michelson KN, Morrison WE, Hackbarth R, Custer JR, Schim SM, Briller SH, Thurston CS (2012) The Bereaved Parent Needs Assessment: a new instrument to assess the needs of parents whose children died in the pediatric intensive care unit. Crit Care Med 40(11):3050–3057

    Article  PubMed  Google Scholar 

  • Mercandante S (2004) Cancer pain management in children. Palliat Med 18(7):654–662

    Article  Google Scholar 

  • Moules NJ, Laing CM, McCaffrey G, Tapp DM, Strother D (2012a) Grandparents’ experiences of childhood cancer, part 1: doubled and silenced. J Pediatr Oncol Nurs 29(3):119–132

    Article  PubMed  Google Scholar 

  • Moules NJ, McCaffrey G, Laing CM, Tapp DM, Strother D (2012b) Grandparents’ experiences of childhood cancer: part 2. The need for support. J Pediatr Oncol Nurs 29:133–140

    Article  PubMed  Google Scholar 

  • Nass SJ, Patlak M, Rapporteurs (2015) National Cancer Policy Forum; Board on Health Care Services; Institute of Medicine; The National Academies of Sciences, Engineering, and Medicine. Comprehensive Cancer Care for Children and Their Families: Summary of a Joint Workshop by the Institute of Medicine and the American Cancer Society. National Academies Press (US), Washington (DC)

    Google Scholar 

  • National Cancer Institute (2014) A Snapshot of Adolescent and Young Adult Cancers – Cancers Affecting Adolescents and Young Adults AYAs). http://www.cancer.gov/research/progress/snapshots/adolescent-young-adult. Accessed 17 Sept 2015

  • Rosenberg AR, Baker KS, Syrjala K, Wolfe J (2012) Systematic review of psychosocial morbidities among bereaved parents of children with cancer. Pediatr Blood Cancer 58(4):503–512

    Article  PubMed  Google Scholar 

  • Rosenberg AR, Baker KS, Syrjala KL, Back AL, Wolfe J (2013a) Promoting resilience among parents and caregivers of children with cancer. J Palliat Med 16:645–652

    Article  PubMed  PubMed Central  Google Scholar 

  • Rosenberg AR, Dussel V, Kang T, Geyer JR, Gerhardt CA, Feudtner C, Wolfe J (2013b) Psychological distress in parents of children with advanced cancer. JAMA Pediatr 167(6):537–543

    Article  PubMed  PubMed Central  Google Scholar 

  • Rosenberg AR, Postieer A, Osenga K, Kreichbergs U, Neville B, Dussel V, Wolfe J (2015) Long-term psychosocial outcomes among bereaved siblings of children with cancer. J Pain Sym Manage 49(1):55–65

    Article  Google Scholar 

  • Shear MK, Simon N, Wall M, Zisook S, Neimeyer R, Duan N, Reynolds C, Lebowitz B, Sung S, Ghesquiere A, Gorscak B, Clayton P, Ito M, Nakajima S, Konishi T, Melhem N, Meert K, Schiff M, O’Connor MF, First M, Sareen J, Bolton J, Skritskaya N, Mancini AD, Keshaviah A (2011) Complicated grief and related bereavement issues for DSM-5. Depress Anxiety 28(2):103–117

    Article  PubMed  PubMed Central  Google Scholar 

  • Silverman PR, Baker J, Cait C, Boerner K (2003) The effects of negative legacies on the adjustment of parentally bereaved children and adolescents. Omega 46:335–352

    Google Scholar 

  • Snaman JM, Torres C, Duffy B, Levine DR, Gibson DV, Baker JN (2016) Parental perspectives of communication at the end of life at a pediatric oncology institution. J Palliat Med. Accessed 21 Feb 2016 [Epub ahead of print] http://www.ncbi.nlm.nih.gov/pubmed/26862782

  • Spinetta JJ, Jankovic M, Eden T, Green D, Martins AG, Wandzura C, Wilbur J, Masera G (1999) Guidelines for assistance to siblings of children with cancer: report of the SIOP Working Committee on Psychosocial Issues in Pediatric Oncology. Med Pediatr Oncol 33(4):395–398

    Article  CAS  PubMed  Google Scholar 

  • Steele AC, Mullins LL, Mullins AJ, Muriel AC (2015) Psychosocial interventions and therapeutic support as a standard of care in pediatric oncology. Pediatr Blood Cancer 62(Suppl 5):S585–S618

    Article  PubMed  Google Scholar 

  • Sveen J, Eilegård A, Steineck G, Kreicbergs U (2014) They still grieve-a nationwide follow-up of young adults 2–9 years after losing a sibling to cancer. Psychooncology 23(6):658–664

    Article  PubMed  Google Scholar 

  • Thiele DM, Whelan TA (2008) The relationship between grandparent satisfaction, meaning, and generativity. Int J Aging Hum Dev 66(1):21–48

    Article  PubMed  Google Scholar 

  • Waghorn M, Young H, Davies A (2011) Opinions of patients with cancer on the relative importance of place of death in the context of a ‘good death’. BMJ Support Palliat Care 1(3):310–314

    Article  PubMed  Google Scholar 

  • Wakefield C, Lin S, Drew D, McLoone J, Doolan E, Young A, Fardell J, Cohn R (2015) Development and evaluation of an information booklet for grandparents of children with cancer. J Pediatr Oncol Nurs(Accessed 12 Sept 2015) [Epub ahead of print]

    Google Scholar 

  • Wakefield CE, Drew D, Ellis SJ, Doolan EL, McLoone JK, Cohn RJ (2014) Grandparents of children with cancer: a controlled study of distress, support, and barriers to care. Psychooncology 23(8):855–856

    Article  PubMed  Google Scholar 

  • Ward E, DeSantis C, Robbins A, Kohler B, Jemal A (2014) Childhood and adolescent cancer statistics. CA Cancer J Clin 64(2):83–103

    Article  PubMed  Google Scholar 

  • Weaver MS, Heinze KE, Bell CJ, Wiener L, Garee AM, Kelly KP, Casey RL, Watson A, Hinds PS, Pediatric Palliative Care Special Interest Group at Children’s National Health System (2016) Establishing psychosocial palliative care standards for children and adolescents with cancer and their families: an integrative review. Palliat Med 30(3):212–223

    Article  PubMed  Google Scholar 

  • Wentlandt K, Krzyzanowska MK, Swami N, Rodin G, Le LW, Sung L, Zimmermann C (2014) Referral practices of pediatric oncologists to specialized palliative care. Support Care Cancer 22(9):2315–2322

    Article  PubMed  Google Scholar 

  • Wiener L, Kazak AE, Noll RB, Patenaude AF, Kupst MJ (2015) Standards for the psychosocial care of children with cancer and their families: an introduction to the special issue. Pediatr Blood Cancer 62:S419–S424

    Article  PubMed  Google Scholar 

  • Wild MR, Espie CA (2004) The efficacy of hypnosis in the reduction of procedural pain and distress in pediatric oncology: a systematic review. Dev Beh Pedia 25(3):207–213

    Article  Google Scholar 

  • Wilkins KL, Woodgate RL (2005) A review of qualitative research on the childhood cancer experience from the perspective of siblings: a need to give them a voice. J Pediatr Oncol Nurs 22(6):305–319

    Article  PubMed  Google Scholar 

  • Wolfe J, Grier HE, Klar N, Levin SB, Ellenbogen JM, Salem-Schatz S, Emanuel EJ, Weeks JC (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, Brey-er J, Aldridge SA, Grier HE, Berde C, Dussel V, Weeks JC (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 

  • World Health Organization (1998) Cancer pain relief and palliative care in children, http://apps.who.int/iris/bitstream/10665/42001/1/9241545127.pdf. Accessed 14 Nov 2015

  • Youngblut JM, Brooten D, Blais K, Kilgore C, Yoo C (2015) Health and functioning in grandparents after a young grandchild’s death. J Community Health 40(5):956–966

    Article  PubMed  PubMed Central  Google Scholar 

Download references

Author information

Authors and Affiliations

Authors

Corresponding author

Correspondence to Kathleen G. Davis PhD, MSEd .

Editor information

Editors and Affiliations

Rights and permissions

Reprints and permissions

Copyright information

© 2017 Springer International Publishing Switzerland

About this chapter

Cite this chapter

Davis, K.G. (2017). Pediatric Cancer and End-of-Life. In: Berk, L. (eds) Dying and Death in Oncology. Springer, Cham. https://doi.org/10.1007/978-3-319-41861-2_11

Download citation

  • DOI: https://doi.org/10.1007/978-3-319-41861-2_11

  • Published:

  • Publisher Name: Springer, Cham

  • Print ISBN: 978-3-319-41859-9

  • Online ISBN: 978-3-319-41861-2

  • eBook Packages: MedicineMedicine (R0)

Publish with us

Policies and ethics