Skip to main content

Thank you for visiting nature.com. You are using a browser version with limited support for CSS. To obtain the best experience, we recommend you use a more up to date browser (or turn off compatibility mode in Internet Explorer). In the meantime, to ensure continued support, we are displaying the site without styles and JavaScript.

  • Review Article
  • Published:

Palliative care for children with cancer

Nature Reviews Clinical Oncology volume 10, pages 100–107 (2013)Cite this article

Subjects

Abstract

Over the past two decades, paediatric palliative care has emerged as both a primary approach and as its own medical subspecialty, the overall aim of which is to ease suffering for children with life-threatening illness and their families through a concurrent model of care. However, most discussions have been focused on the transition to palliative care when no realistic hope for cure exists. We believe that, because the course of cancer is so unpredictable, this idea is misleading. Indeed, palliative care is increasingly being recognized as being about not just how to cope with the process of dying, but also about how to engage in living when faced with a life-threatening illness. This article will examine our current understanding of several areas of palliative care, with the ultimate message that palliative care is simply a novel term for the total care of a child and family, an approach that should be applied consistently and concurrently regardless of disease status. By improving familiarity with palliative care and building relationships with palliative care specialists, the paediatric oncology clinician will ensure that the best care possible for children and families is provided, regardless of outcome.

Key Points

  • Palliative care is the concomitant, complete care of a child and family facing a life-threatening illness, regardless of current disease status

  • Prognostic uncertainty, and not likelihood of survival, should determine the need for palliative care

  • Palliative care depends on an interdisciplinary team approach

  • Exploring goals of care is key to guiding management and decision making

  • Primary oncology services should be familiar with, and comfortable when applying, principles of palliative care

This is a preview of subscription content, access via your institution

Access options

Buy this article

  • Purchase on Springer Link
  • Instant access to full article PDF
Buy now

Prices may be subject to local taxes which are calculated during checkout

Figure 1: Model of paediatric palliative care.

Similar content being viewed by others

References

  1. National Cancer Institute. A snapshot of pediatric cancers [online], (2011).

  2. Wolfe, J. et al. Symptoms and suffering at the end of life in children with cancer. N. Engl. J. Med. 342, 326–333 (2000).

    Article  CAS  PubMed  Google Scholar 

  3. Rushton, C. H. et al. Interdisciplinary interventions to improve pediatric palliative care and reduce health care professional suffering. J. Palliat. Med. 9, 922–933 (2006).

    Article  PubMed  Google Scholar 

  4. Meier, D. E. & Beresford, L. The palliative care team. J. Palliat. Med. 11, 677–681 (2008).

    Article  PubMed  Google Scholar 

  5. Baker, J. N et al. Integration of palliative care practices into the ongoing care of children with cancer: individualized care planning and coordination. Pediatr. Clin. North Am. 55, 223–250 (2008).

    Article  PubMed  PubMed Central  Google Scholar 

  6. Ward-Smith, P. et al. Development of a pediatric palliative care team. J. Pediatr. Health Care 21, 245–249 (2007).

    Article  PubMed  Google Scholar 

  7. Mack, J. W. & Grier, H. E. The day one talk. J. Clin. Oncol. 22, 563–566 (2011).

    Article  Google Scholar 

  8. Freyer, D. R. Care of the dying adolescent: special considerations. Pediatrics 113, 381–388 (2004).

    Article  PubMed  Google Scholar 

  9. Weiner, L. et al. Allowing adolescents and young adults to plan their end-of-life care. Pediatrics 130, 897–905 (2012).

    Article  Google Scholar 

  10. Canadian Health Services Research Foundation. Teamwork in healthcare: promoting effective teamwork in healthcare in Canada [online], (2006).

  11. Carroll, J. M., Torkildson, C. & Winsness, J. S. Issues related to providing quality pediatric palliative care in the community. Pediatr. Clin. North Am. 54, 813–827 (2007).

    Article  PubMed  Google Scholar 

  12. Friedman, D. L., Hilden, J. M. & Powaski, K. Issues and challenges in palliative care for children with cancer. Curr. Oncol. Rep. 6, 431–437 (2004).

    Article  PubMed  Google Scholar 

  13. Hays, R. M. et al. The Seattle Pediatric Palliative Care Project: effects on family satisfaction and health-related quality of life. J. Palliat. Med. 9, 716–728 (2006).

    Article  PubMed  Google Scholar 

  14. Carroll, J. M., Santucci, G., Kang, T. I. & Feudtner, C. Partners in pediatric palliative care: a program to enhance collaboration between hospital and community palliative care services. Am. J. Hosp. Palliat. Care 24, 191–195 (2007).

    Article  PubMed  Google Scholar 

  15. Wolff, J., Robert, R., Sommerer, A. & Volz-Fleckenstein, M. Impact of a pediatric palliative care program. Pediatr. Blood Cancer 54, 279–283 (2010).

    PubMed  Google Scholar 

  16. Dussel, V. et al. Looking beyond where children die: determinants and effects of planning a child's location of death. J. Pain Symptom Manage. 37, 33–43 (2009).

    Article  PubMed  Google Scholar 

  17. Fowler, K. et al. Hospice referral practices for children with cancer: a survey of pediatric oncologists. J. Clin. Oncol. 24, 1099–1104 (2006).

    Article  PubMed  Google Scholar 

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

    Article  PubMed  Google Scholar 

  19. Knapp, C., Madden, V., Sloyer, P. & Shenkman, E. Effects of an integrated care system on quality of care and satisfaction for children with special health care needs. Matern. Child Health J. 16, 579–586 (2012).

    Article  PubMed  Google Scholar 

  20. Lannen, P. et al. Absorbing information about a child's incurable cancer. Oncology 78, 259–266 (2010).

    Article  PubMed  PubMed Central  Google Scholar 

  21. Parker, T. M. & Johnston, D. L. Parental perceptions of being told their child has cancer. Pediatr. Blood Cancer 51, 531–534 (2008).

    Article  PubMed  Google Scholar 

  22. Levi, R. B. et al. Diagnosis, disclosure, and informed consent: learning from parents of children with cancer. J. Pediatr. Hematol. Oncol. 22, 3–12 (2000).

    Article  CAS  PubMed  Google Scholar 

  23. Bluebond-Langner, M. The Private Worlds of Dying Children (Princeton University Press, Princeton, 1978).

    Google Scholar 

  24. Hinds, P. S. et al. End-of-life care preferences of pediatric patients with cancer. J. Clin. Oncol. 23, 9146–9154 (2005).

    Article  PubMed  Google Scholar 

  25. Young, B. et al. Parents' experiences of their children's presence in discussions with physicians about leukemia. Pediatrics 127, e1230–e1238 (2011).

    Article  PubMed  Google Scholar 

  26. Matsuoka, M. & Narama, M. Parents' thoughts and perceptions on hearing that their child has incurable cancer. J. Palliat. Med. 15, 340–346 (2012).

    Article  PubMed  Google Scholar 

  27. de Vries, M. C. et al. Pediatric oncologists' attitudes towards involving adolescents in decision-making concerning research participation. Pediatr. Blood Cancer 55, 123–128 (2010).

    PubMed  Google Scholar 

  28. Kreicbergs, U., Valdimarsdóttir, U., Onelöv, E., Henter, J. I. & Steineck, G. Talking about death with children who have severe malignant disease. N. Engl. J. Med. 351, 1175–1186 (2004).

    Article  CAS  PubMed  Google Scholar 

  29. Wolfe, J. et al. Understanding of prognosis among parents of children who died of cancer: impact on treatment goals and integration of palliative care. JAMA 284, 2469–2475 (2000).

    Article  CAS  PubMed  Google Scholar 

  30. Tomlinson, D. et al. Concordance between couples reporting their child's quality of life and their decision making in pediatric oncology palliative care. J. Pediatr. Oncol. Nurs. 28, 319–325 (2011).

    Article  PubMed  Google Scholar 

  31. Edwards, K. E. et al. Understanding of prognosis and goals of care among couples whose child died of cancer. J. Clin. Oncol. 26, 1310–1315 (2008).

    Article  PubMed  Google Scholar 

  32. McCarthy, M. C. et al. Prevalence and predictors of parental grief and depression after the death of a child from cancer. J. Palliat. Med. 13, 1321–1326 (2010).

    Article  PubMed  Google Scholar 

  33. Surkan, P. J. et al. Perceptions of inadequate health care and feelings of guilt in parents after the death of a child to a malignancy: a population-based long-term follow-up. J. Palliat. Med. 9, 317–331 (2006).

    Article  PubMed  Google Scholar 

  34. Lannen, P. K. et al. Unresolved grief in a national sample of bereaved parents: impaired mental and physical health 4 to 9 years later. J. Clin. Oncol. 26, 5870–5876 (2008).

    Article  PubMed  PubMed Central  Google Scholar 

  35. Kreicbergs, U. et al. Care-related distress: a nationwide study of parents who lost their child to cancer. J. Clin. Oncol. 23, 9162–9171 (2005).

    Article  PubMed  Google Scholar 

  36. Li, J., Precht, D. H, Mortensen, P. B. & Olsen, J. Mortality in parents after death of a child in Denmark: a nationwide follow-up study. Lancet 361, 363–367 (2003).

    Article  PubMed  Google Scholar 

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

    Article  PubMed  Google Scholar 

  38. Mack, J. et al. Communication about prognosis between parents and physicians of children with cancer: parent preferences and the impact of prognostic information. J. Clin. Oncol. 24, 5265–5270 (2006).

    Article  PubMed  Google Scholar 

  39. Eilegård, A., Steineck, G., Nyberg, T. & Kreicbergs, U. Psychological health in siblings who lost a brother or sister to cancer 2 to 9 years earlier. Psychooncology http://dx.doi.org/10.1002/pon.3053.

  40. Hagedoorn, M., Kreicbergs, U. & Appel, C. Coping with cancer: the perspective of patients' relatives. Acta Oncol. 50, 205–211 (2011).

    Article  PubMed  Google Scholar 

  41. Alderfer, M. A. et al. Psychosocial adjustment of siblings of children with cancer: a systematic review. Psychooncology 19, 789–805 (2010).

    Article  PubMed  Google Scholar 

  42. Tsimicalis, A. et al. The cost of childhood cancer from the family's perspective: a critical review. Pediatr. Blood Cancer 56, 707–717 (2011).

    Article  PubMed  Google Scholar 

  43. Dussel, V. et al. Unmeasured costs of a child's death: perceived financial burden, work disruptions, and economic coping strategies used by American and Australian families who lost children to cancer. J. Clin. Oncol. 29, 1007–1013 (2011).

    Article  PubMed  PubMed Central  Google Scholar 

  44. Theunissen, J. M. et al. Symptoms in the palliative phase of children with cancer. Pediatr. Blood Cancer 49, 160–165 (2007).

    Article  CAS  PubMed  Google Scholar 

  45. Heath, J. A. et al. Symptoms and suffering at the end of life in children with cancer: an Australian perspective. Med. J. Aust. 192, 71–75 (2010).

    PubMed  Google Scholar 

  46. Hinds, P. S. et al. “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, 5979–5985 (2009).

    Article  PubMed  PubMed Central  Google Scholar 

  47. Maurer, S. et al. Decision making by parents of children with incurable cancer who opt for enrollment on a phase I trial compared with choosing a do not resuscitate/terminal care option. J. Clin. Oncol. 28, 3292–3298 (2010).

    Article  PubMed  PubMed Central  Google Scholar 

  48. Tomlinson, D. et al. Chemotherapy versus supportive care alone in pediatric palliative care for cancer: comparing the preferences of parents and health care professionals. CMAJ 183, 1252–1258 (2011).

    Article  Google Scholar 

  49. Bluebond-Langner, M., Belasco, J. B., Goldman, A. & Belasco, C. Understanding parents' approaches to care and treatment of children with cancer when standard therapy has failed. J. Clin. Oncol. 25, 2414–2419 (2007).

    Article  PubMed  Google Scholar 

  50. Tomlinson, D. et al. Factors affecting treatment choices in paediatric palliative care: comparing parents and health professionals. Eur. J. Cancer 47, 2182–2187 (2011).

    Article  PubMed  Google Scholar 

  51. Mack, J. W. et al. Parents' views of cancer-directed therapy for children with no realistic chance for cure. J. Clin. Oncol. 26, 4759–4764 (2008).

    Article  PubMed  PubMed Central  Google Scholar 

  52. Ullrich, C. K. et al. Fatigue in children with cancer at the end of life. J. Pain Symptom Manage. 40, 483–494 (2010).

    Article  PubMed  Google Scholar 

  53. Pöder, U., Ljungman, G. & von Essen, L. Parents' perceptions of their children's cancer-related symptoms during treatment: a prospective, longitudinal study. J. Pain Symptom Manage. 40, 661–670 (2010).

    Article  PubMed  Google Scholar 

  54. Wolfe, J. et al. Easing of suffering in children with cancer at the end of life: is care changing? J. Clin. Oncol. 26, 1717–1723 (2008).

    Article  PubMed  Google Scholar 

  55. Tomlinson, D., Hinds, P. S., Bartels, U., Hendershot, E. & Sung, L. Parent reports of quality of life for pediatric patients with cancer with no realistic chance of cure. J. Clin. Oncol. 29, 639–645 (2011).

    Article  PubMed  Google Scholar 

  56. Pritchard, M. et al. Factors that distinguish symptoms of most concern to parents from other symptoms of dying children. J. Pain Symptom Manage. 39, 627–636 (2010).

    Article  PubMed  PubMed Central  Google Scholar 

  57. Pritchard, M. et al. Cancer-related symptoms most concerning to parents during the last week and last day of their child's life. Pediatrics 121, e1301–e1309 (2008).

    Article  PubMed  Google Scholar 

  58. Jalmsell, L., Kreicbergs, U., Onelöv, E., Steineck, G. & Henter, J. I. Symptoms affecting children with malignancies during the last month of life: a nationwide follow-up. Pediatrics 117, 1314–1320 (2006).

    Article  PubMed  Google Scholar 

  59. Cherny, N. et al. European association for palliative care (EAPC) recommended framework for the use of sedation in palliative care. Palliat. Med. 23, 581–593 (2009).

    Article  PubMed  Google Scholar 

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

    Article  PubMed  Google Scholar 

  61. Anghelescu, D. L., Hamilton, H., Faughnan, L. G., Johnson, L. M. & Baker, J. N. Pediatric palliative sedation therapy with propofol: recommendations based on experience in children with terminal cancer. J. Palliat. Med. 15, 1082–1090 (2012).

    Article  PubMed  PubMed Central  Google Scholar 

  62. Sencer, S. F. & Kelly, K. M. Complementary and alternative therapies in pediatric oncology. Pediatr. Clin. North Am. 54, 1043–1060 (2007).

    Article  PubMed  Google Scholar 

  63. Friedman, T. et al. Use of alternative therapies for children with cancer. Pediatrics 100, e1–e8 (1997).

    Article  CAS  PubMed  Google Scholar 

  64. Kelly, K. M. Complementary and alternative medical therapies for children with cancer. Eur. J. Cancer 40, 2041–2046 (2004).

    Article  PubMed  Google Scholar 

  65. Kelly, K. M. et al. Use of unconventional therapies by children with cancer at an urban medical center. J. Pediatr. Hematol. Oncol. 22, 412–416 (2000).

    Article  CAS  PubMed  Google Scholar 

  66. Hexem, K. R., Mollen, C. J., Carroll, K., Lanctot, D. A. & Feudtner, C. How parents of children receiving pediatric palliative care use religion, spirituality, or life philosophy in tough times. J. Palliat. Med. 14, 39–44 (2011).

    Article  PubMed  PubMed Central  Google Scholar 

  67. Robinson, M. R., Thiel, M. M., Backus, M. M. & Meyer, E. C. Matters of spirituality at the end of life in the pediatric intensive care unit. Pediatrics 118, e719–e729 (2006).

    Article  PubMed  Google Scholar 

  68. Davies, B., Brenner, P., Orloff, S., Sumner, L. & Worden, W. Addressing spirituality in pediatric hospice and palliative care. J. Palliat Care. 18, 59–67 (2002).

    Article  PubMed  Google Scholar 

  69. Meyer, E. C., Ritholz, M. D., Burns, J. P. & Truog, R. Improving the quality of end-of-life care in the pediatric intensive care unit: parents' priorities and recommendations. Pediatrics 117, 649–657 (2006).

    Article  PubMed  Google Scholar 

  70. Okon, T. R. Spiritual, religious, and existential aspects of palliative care. J. Palliat. Med. 8, 392–414 (2005).

    Article  PubMed  Google Scholar 

  71. Puchalski, C. M. Spirituality and end-of-life care: a time for listening and caring. J. Palliat. Med. 5, 289–294 (2002).

    Article  PubMed  Google Scholar 

  72. Chochinov, H. M. & Cann, B. J. Interventions to enhance the spiritual aspects of dying. J. Palliat. Med. 8 (Suppl. 1), 103–115 (2005).

    Article  Google Scholar 

  73. Fowler, J. W. Stages of Faith: The Psychology of Human Development and the Quest for Meaning (Harper Collins Press, New York, 1981).

    Google Scholar 

  74. Neuman, M. Addressing children's beliefs through Fowler's stages of faith. J. Pediatr. Nurs. 26, 44–50 (2006).

    Article  Google Scholar 

  75. Fitchett, G. et al. The role of professional chaplains on pediatric palliative care teams: perspectives from physicians and chaplains. J. Palliat. Med. 14, 704–707 (2011).

    Article  PubMed  Google Scholar 

  76. Bleyer, A., Budd, T. & Montello, M. Adolescents and young adults with cancer: the scope of the problem and criticality of clinical trials. Cancer 107 (Suppl. 7), 1645–1655 (2006).

    Article  PubMed  Google Scholar 

  77. Zebrack, B. J. Psychological, social, and behavioral issues for young adults with cancer Cancer 117 (Suppl. 10), 2289–2294 (2011).

    Article  PubMed  Google Scholar 

  78. Treadgold, C. L. & Kuperberg, A. Been there, done that, wrote the blog: the choices and challenges of supporting adolescents and young adults with cancer. J. Clin. Oncol. 28, 4842–4849 (2010).

    Article  PubMed  Google Scholar 

  79. Morgan, S., Davies, S., Palmer, S. & Plaster, M. Sex, drugs, and rock 'n' roll: caring for adolescents and young adults with cancer. J. Clin. Oncol. 28, 4825–4830 (2010).

    Article  PubMed  Google Scholar 

  80. Pouseet, G. et al. Attitudes of adolescent cancer survivors toward end-of-life decisions for minors. Pediatrics 12, e1142–e1148 (2009).

    Article  Google Scholar 

  81. Wolfe, J. Recognizing a global need for high quality pediatric palliative care. Pediatr. Blood Cancer 57, 187–188 (2011).

    Article  PubMed  Google Scholar 

  82. Delgado, E. et al. Availability of palliative care services for children with cancer in economically diverse regions of the world. Eur. J. Cancer 46, 2260–2266 (2010).

    Article  PubMed  PubMed Central  Google Scholar 

  83. Saad, R. et al. Bereaved parental evaluation of the quality of a palliative care program in Lebanon. Pediatr. Blood Cancer 57, 310–316 (2011).

    Article  PubMed  Google Scholar 

  84. Clemens, K. E. et al. Palliative care in developing countries: what are the important issues? Palliat. Med. 21, 173–175 (2007).

    Article  PubMed  Google Scholar 

  85. Ddungu, H. Palliative care: what approaches are suitable in developing countries? Br. J. Haematol. 154, 728–735 (2011).

    Article  PubMed  Google Scholar 

  86. Amery, J., Rose, C., Byarugaba, C. & Agupio, G. A study into the children's palliative care educational needs of health professionals in Uganda. J. Palliat. Med. 13, 147–153 (2010).

    Article  PubMed  Google Scholar 

  87. Bensink, M. E. et al. Using videotelephony to support paediatric oncology-related palliative care in the home: from abandoned RCT to acceptability study. Palliat. Med. 23, 228–237 (2009).

    Article  CAS  PubMed  Google Scholar 

  88. De Lima, L. et al. Ensuring palliative medicine availability: the development of the IAHPC list of essential medicines for palliative care. J. Pain Symptom Manage. 33, 521–526 (2007).

    Article  PubMed  Google Scholar 

  89. Hilden, J. M. et al. 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, 205–212 (2001).

    Article  CAS  PubMed  Google Scholar 

  90. Kolarik, R. C., Walker, G. & Arnold, R. M. Pediatric resident education in palliative care: a needs assessment. Pediatrics 117, 1949–1954 (2006).

    Article  PubMed  Google Scholar 

  91. Schiffman, J. D. et al. Introduction of a pediatric palliative care curriculum for pediatric residents. J. Palliat. Med. 11, 164–169 (2008).

    Article  PubMed  Google Scholar 

  92. Gerhardt, C. et al. Longitudinal evaluation of a pediatric palliative care educational workshop for oncology fellows. J. Palliat. Med. 12, 323–328 (2009).

    Article  PubMed  Google Scholar 

  93. Roth, M., Wang, D., Kim, M. & Moody, K. An assessment of the current state of palliative care education in pediatric hematology/oncology fellowship training. Pediatr. Blood Cancer 53, 647–651 (2009).

    Article  PubMed  Google Scholar 

  94. Ferris, F. D. et al. Palliative cancer care a decade later: accomplishments, the need, next steps—from the American Society of Clinical Oncology. J. Clin. Oncol. 27, 3052–3058 (2009).

    Article  PubMed  Google Scholar 

  95. Baker, J. et al. National survey of pediatric residency program directors and residents regarding education in palliative medicine and end-of-life care. J. Palliat. Med. 10, 420–429 (2007).

    Article  PubMed  Google Scholar 

  96. Johnston, D. L. et al. Availability and use of palliative care and end-of-life services for pediatric oncology patients. J. Clin. Oncol. 26, 4646–4650 (2008).

    Article  PubMed  Google Scholar 

  97. Sullivan, A. et al. Creating enduring change: demonstrating the long-term impact of a faculty development program in palliative care. J. Gen. Intern. Med. 21, 907–914 (2006).

    Article  PubMed  PubMed Central  Google Scholar 

Download references

Author information

Authors and Affiliations

  1. Department of Psychosocial Oncology and Palliative Care, Dana-Farber Cancer Institute, 450 Brookline Avenue, Boston, MA 02215, USA

    Elisha Waldman & Joanne Wolfe

Authors
  1. Elisha Waldman
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. Joanne Wolfe
    View author publications

    You can also search for this author in PubMed Google Scholar

Contributions

E. Waldman researched data from the article. Both authors made a substantial contribution to the discussion of the content, wrote the manuscript, and edited and reviewed the article prior to submission.

Corresponding author

Correspondence to Joanne Wolfe.

Ethics declarations

Competing interests

The authors declare no competing financial interests.

Rights and permissions

Reprints and permissions

About this article

Cite this article

Waldman, E., Wolfe, J. Palliative care for children with cancer. Nat Rev Clin Oncol 10, 100–107 (2013). https://doi.org/10.1038/nrclinonc.2012.238

Download citation

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1038/nrclinonc.2012.238

This article is cited by

Search

Advanced search

Quick links

Nature Briefing: Cancer

Sign up for the Nature Briefing: Cancer newsletter — what matters in cancer research, free to your inbox weekly.

Get what matters in cancer research, free to your inbox weekly. Sign up for Nature Briefing: Cancer