Skip to main content
SpringerLink
Log in

Palliative care in Swiss pediatric oncology settings: a retrospective analysis of medical records

  • Original Article
  • Published:
Supportive Care in Cancer Aims and scope Submit manuscript

Abstract

Purpose

This study examined the provision of palliative care and related decision-making in Swiss pediatric oncology settings. The aim was to determine if and when children who died from cancer received palliative care, whether there were differences by cancer diagnosis, and inclusion of children in decision-making regarding palliative care.

Methods

Using a standardized data extraction form, a retrospective review of medical records of deceased pediatric patients was conducted. The form captured information on demographics, diagnosis, relapse(s), treatments, decision-making during palliative care, and circumstances surrounding a child’s death.

Results

For 170 patients, there was information on whether the child received palliative care. Among those, 38 cases (22%) did not receive palliative care. For 16 patients, palliative care began at diagnosis. The mean duration of palliative care was 145 days (Mdn = 89.5, SD = 183.4). Decision to begin palliative care was discussed solely with parent(s) in 60.9% of the cases. In 39.1%, the child was involved. These children were 13.6 years of age (SD = 4.6), whereas those not included were 7.16 years old (SD = 3.9). Leukemia patients were less likely to receive palliative care than the overall sample, and patients with CNS neoplasms received palliative care for a longer time than other patients.

Conclusions

There are still high numbers of late or non-referrals, and even children older than 12 years were not involved in decision-making regarding palliative care. These results do not align with international organizational guidelines which recommend that palliative care should begin at diagnosis.

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

Access this article

Log in via an institution

Price excludes VAT (USA)
Tax calculation will be finalised during checkout.

Instant access to the full article PDF.

Institutional subscriptions

Fig. 1
Fig. 2

Similar content being viewed by others

References

  1. De Clercq E, Rost M, Pacurari N, Elger BS, Wangmo T (2017) Aligning guidelines and medical practice: literature review on pediatric palliative care guidelines. Palliative & supportive care 15:1–16. https://doi.org/10.1017/S1478951516000882

    Article  Google Scholar 

  2. American Academy of Pediatrics (2013) Pediatric palliative care and hospice care. Commitments, guidelines, and recommendations. Pediatrics 132(5):966–972. https://doi.org/10.1542/peds.2013-2731

    Article  Google Scholar 

  3. Canadian Hospice Palliative Care Association (2006) Pediatric hospice palliative care. Guiding Principles and Norms of Practice

  4. EAPC Taskforce for Palliative Care in Children (2009) Palliative Care for Infants, children and young people. The Facts. Fondazione Maruzza Lefebvre D’Ovidio Onlus

  5. Nelson R, Botkin J (2000) AAP committee on bioethics and committee on hospital care: statement on palliative care for children. Pediatrics 106(2):351–357

    Article  Google Scholar 

  6. Masera G, Spinetta JJ, Jankovic M, Ablin AR, D'Angio GJ, Van Dongen-Melman J, Eden T, Martins AG, Mulhern RK, Oppenheim D, Topf R, Chesler MA (1999) Guidelines for assistance to terminally ill children with cancer: a report of the SIOP working committee on psychosocial issues in pediatric oncology. Med Pediatr Oncol 32(1):44–48

    Article  PubMed  CAS  Google Scholar 

  7. Thompson LA, Knapp C, Madden V, Shenkman E (2009) Pediatricians' perceptions of and preferred timing for pediatric palliative care. Pediatrics 123(5):e777–e782. https://doi.org/10.1542/peds.2008-2721

    Article  PubMed  Google Scholar 

  8. Jalmsell L, Forslund M, Hansson MG, Henter JI, Kreicbergs U, Frost BM (2013) Transition to noncurative end-of-life care in paediatric oncology - a nationwide follow-up in Sweden. Acta Paediatr 102(7):744–748. https://doi.org/10.1111/apa.12242

    Article  PubMed  Google Scholar 

  9. Johnston DL, Vadeboncoeur C (2012) Palliative care consultation in pediatric oncology. Support Care Cancer 20(4):799–803. https://doi.org/10.1007/s00520-011-1152-6

    Article  PubMed  Google Scholar 

  10. 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. https://doi.org/10.1089/jpm.2013.0014

    Article  PubMed  Google Scholar 

  11. Wolfe J, Hammel JF, Edwards KE, Duncan J, Comeau M, Breyer 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. https://doi.org/10.1200/jco.2007.14.0277

    Article  PubMed  Google Scholar 

  12. De Graves SD, Aranda S (2002) Exploring documentation of end-of-life care of children with cancer. Int J Palliat Nurs 8(9):435–443

    Article  PubMed  Google Scholar 

  13. Zhukovsky DS, Herzog CE, Kaur G, Palmer JL, Bruera E (2009) The impact of palliative care consultation on symptom assessment, communication needs, and palliative interventions in pediatric patients with cancer. J Palliat Med 12(4):343–349. https://doi.org/10.1089/jpm.2008.0152

    Article  PubMed  Google Scholar 

  14. Dalberg T, Jacob-Files E, Carney PA, Meyrowitz J, Fromme EK, Thomas G (2013) Pediatric oncology providers' perceptions of barriers and facilitators to early integration of pediatric palliative care. Pediatr Blood Cancer 60(11):1875–1881. https://doi.org/10.1002/pbc.24673

    Article  PubMed  PubMed Central  Google Scholar 

  15. Davies B, Sehring SA, Partridge JC, Cooper BA, Hughes A, Philp JC, Amidi-Nouri A, Kramer RF (2008) Barriers to palliative care for children: perceptions of pediatric health care providers. Pediatrics 121(2):282–288. https://doi.org/10.1542/peds.2006-3153

    Article  PubMed  Google Scholar 

  16. Kaye EC, Friebert S, Baker JN (2016) Early integration of palliative Care for Children with high-risk cancer and their families. Pediatr Blood Cancer 63(4):593–597. https://doi.org/10.1002/pbc.25848

    Article  PubMed  Google Scholar 

  17. Coyne I, Amory A, Gibson F, Kiernan G (2016) Information-sharing between healthcare professionals, parents and children with cancer: more than a matter of information exchange. Eur J Cancer Care (Engl) 25(1):141–156. https://doi.org/10.1111/ecc.12411

    Article  CAS  Google Scholar 

  18. Badarau DO, Wangmo T, Ruhe KM, Miron I, Colita A, Dragomir M, Schildmann J, Elger BS (2015) Parents' challenges and physicians' tasks in disclosing cancer to children. A qualitative interview study and reflections on professional duties in pediatric oncology. Pediatr Blood Cancer 62:2177–2182. https://doi.org/10.1002/pbc.25680

    Article  PubMed  Google Scholar 

  19. Badarau DO, Ruhe K, Kühne T, De Clercq E, Colita A, Elger BS, Wangmo T (2017) Decision making in pediatric oncology: views of parents and physicians in two European countries. AJOB Empirical Bioethics 8(1):21–31. https://doi.org/10.1080/23294515.2016.1234519

    Article  PubMed  Google Scholar 

  20. Ruhe KM, Wangmo T, De Clercq E, Badarau DO, Ansari M, Kuhne T, Niggli F, Elger BS, Swiss Pediatric Oncology G (2016) Putting patient participation into practice in pediatrics-results from a qualitative study in pediatric oncology. Eur J Pediatr 175(9):1147–1155. https://doi.org/10.1007/s00431-016-2754-2

    Article  PubMed  Google Scholar 

  21. Wangmo T, De Clercq E, Ruhe KM, Beck-Popovic M, Rischewski J, Angst R, Ansari M, Elger BS (2017) Better to know than to imagine: including children in their health care. AJOB Empirical Bioethics 8(1):11–20. https://doi.org/10.1080/23294515.2016.1207724

    Article  PubMed  Google Scholar 

  22. Ruhe KM, Badarau DO, Brazzola P, Hengartner H, Elger BS, Wangmo T, Swiss Pediatric Oncology G (2015) Participation in pediatric oncology: views of child and adolescent patients. Psycho-Oncology 25(9):1036–1042. https://doi.org/10.1002/pon.4053

    Article  PubMed  Google Scholar 

  23. Wangmo T, De Clercq C, Ruhe KM, Beck-Popovic M, Rischewski J, Angst R, Ansari M, Elger BS (2016) Better to know than to imagine: including children in their health care. AJOB Empir Bioeth 10

  24. Wangmo T, Ruhe KM, Badarau DO, Kuhne T, Niggli F, Elger BS, Swiss Paediatric Oncology G (2017) Parents' and patients' experiences with paediatric oncology care in Switzerland--satisfaction and some hurdles. Swiss Med Wkly 146:w14309. https://doi.org/10.4414/smw.2016.14309

    Article  Google Scholar 

  25. Hsieh HF, Shannon SE (2005) Three approaches to qualitative content analysis. Qual Health Res 15(9):1277–1288. https://doi.org/10.1177/1049732305276687

    Article  PubMed  Google Scholar 

  26. 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  Google Scholar 

  27. Cawkwell PB, Gardner SL, Weitzman M (2015) Persistent racial and ethnic differences in location of death for children with cancer. Pediatr Blood Cancer 62(8):1403–1408. https://doi.org/10.1002/pbc.25479

    Article  PubMed  Google Scholar 

  28. Zimmermann K, Bergstraesser E, Engberg S, Ramelet AS, Marfurt-Russenberger K, Von der Weid N, Grandjean C, Fahrni-Nater P, Cignacco E, Consortium P (2016) When parents face the death of their child: a nationwide cross-sectional survey of parental perspectives on their child's end-of life care. Bmc Palliat Care 15:30. https://doi.org/10.1186/s12904-016-0098-3

    Article  PubMed  PubMed Central  Google Scholar 

  29. Eskola K, Bergstraesser E, Zimmermann K, Cignacco E (2015) Paediatric end-of-life care in the home care setting (PELICAN HOME) - a mixed methods study protocol. J Adv Nurs 71(1):204–213

    Article  PubMed  Google Scholar 

  30. Public Health England (2016) Childhood cancer registration in England: 2015 to 2016

  31. Gatta G, Botta L, Rossi S, Aareleid T, Bielska-Lasota M, Clavel J, Dimitrova N, Jakab Z, Kaatsch P, Lacour B (2014) Childhood cancer survival in Europe 1999–2007: results of EUROCARE-5—a population-based study. Lancet Oncol 15(1):35–47

    Article  PubMed  Google Scholar 

  32. Gatta G, Capocaccia R, Coleman MP, Ries LA, Berrino F (2002) Childhood cancer survival in Europe and the United States. Cancer 95(8):1767–1772. https://doi.org/10.1002/cncr.10833

    Article  PubMed  Google Scholar 

  33. de Vos MA, van der Heide A, Maurice-Stam H, Brouwer OF, Plotz FB, Schouten-van Meeteren AY, Willems DL, Heymans HS, Bos AP (2011) The process of end-of-life decision-making in pediatrics: a national survey in the Netherlands. Pediatrics 127(4):e1004–e1012. https://doi.org/10.1542/peds.2010-2591

    Article  PubMed  Google Scholar 

  34. Coyne I, Amory A, Kiernan G, Gibson F (2014) Children's participation in shared decision-making: children, adolescents, parents and healthcare professionals' perspectives and experiences. Eur J Oncol Nurs 18(3):273–280

    Article  PubMed  Google Scholar 

  35. Mack JW, Wolfe J, Cook EF, Grier HE, Cleary PD, Weeks JC (2011) Parents' roles in decision making for children with cancer in the first year of cancer treatment. J Clin Oncol 29(15):2085–2090. https://doi.org/10.1200/JCO.2010.32.0507

    Article  PubMed  Google Scholar 

  36. Ishibashi A (2001) The needs of children and adolescents with cancer for information and social support. Cancer Nurs 24(1):61–67

    Article  PubMed  CAS  Google Scholar 

  37. Ruhe KM, Wangmo T, Badarau DO, Elger BS, Niggli F (2015) Decision-making capacity of children and adolescents--suggestions for advancing the concept's implementation in pediatric healthcare. Eur J Pediatr 174(6):775–782. https://doi.org/10.1007/s00431-014-2462-8

    Article  PubMed  Google Scholar 

  38. Peter C (2008) Die Einwilligung von Minderjährigen in medizinische Eingriffe. Schweizerische Ärztezeitung 89(36):1539–1540

    Article  Google Scholar 

  39. Whitney SN, Ethier AM, Fruge E, Berg S, McCullough LB, Hockenberry M (2006) Decision making in pediatric oncology: who should take the lead? The decisional priority in pediatric oncology model. J Clin Oncol 24(1):160–165. https://doi.org/10.1200/JCO.2005.01.8390

    Article  PubMed  Google Scholar 

  40. Vollenbroich R, Duroux A, Grasser M, Brandstatter M, Borasio GD, Fuhrer M (2012) Effectiveness of a pediatric palliative home care team as experienced by parents and health care professionals. J Palliat Med 15(3):294–300. https://doi.org/10.1089/jpm.2011.0196

    Article  PubMed  Google Scholar 

Download references

Acknowledgements

The authors greatly acknowledge the support of the following physicians: Dr. Heinz Hengartner; Prof. Maja Beck-Popovic; and PD Dr. Johannes Rischewski. We sincerely thank the data managers of the seven SPOG-centers who supported us during the data collection process, Dr. Eva de Clercq and Milenko Rakic for their contributions to data collection, and Brian Cheng for proof reading the last version of the manuscript.

Funding

This work was supported by the Swiss National Science Foundation, National Research Programme 67 “End of Life”, Grant-No. 406740_139283/1.

Author information

Author notes

  1. Elaine Acheson and Michael Rost contributed equally to this paper.

Authors and Affiliations

  1. Institute for Biomedical Ethics, University of Basel, Bernoullistrasse 28, -4056, Basel, CH, Switzerland

    Michael Rost, Elaine Acheson, Nadia Pacurari, Bernice S. Elger & Tenzin Wangmo

  2. Pediatric Oncology and Hematology, University of Basel Children’s Hospital UKBB Basel, Basel, Switzerland

    Thomas Kühne

  3. Department of Pediatric, Oncology and Hematology Unit, Geneva University Hospital, Geneva, Switzerland

    Marc Ansari

  4. Ospedale Regionale di Bellinzona e Valli, Pediatria, Bellinzona, Switzerland

    Pierluigi Brazzola

  5. Depatment of Pediatric Oncology, University Children’s Hospital, Zurich, Switzerland

    Felix Niggli

  6. Center for Legal Medicine, University of Geneva, Geneva, Switzerland

    Bernice S. Elger

Authors
  1. Michael Rost
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. Elaine Acheson
    View author publications

    You can also search for this author in PubMed Google Scholar

  3. Thomas Kühne
    View author publications

    You can also search for this author in PubMed Google Scholar

  4. Marc Ansari
    View author publications

    You can also search for this author in PubMed Google Scholar

  5. Nadia Pacurari
    View author publications

    You can also search for this author in PubMed Google Scholar

  6. Pierluigi Brazzola
    View author publications

    You can also search for this author in PubMed Google Scholar

  7. Felix Niggli
    View author publications

    You can also search for this author in PubMed Google Scholar

  8. Bernice S. Elger
    View author publications

    You can also search for this author in PubMed Google Scholar

  9. Tenzin Wangmo
    View author publications

    You can also search for this author in PubMed Google Scholar

Corresponding author

Correspondence to Michael Rost.

Ethics declarations

All responsible ethics committees approved this study.

Conflict of interest

The authors declare that they have no conflict of interest.

Research involving Human Participants

No human participants were involved.

Informed consent

Not applicable.

Rights and permissions

Reprints and permissions

About this article

Check for updates. Verify currency and authenticity via CrossMark

Cite this article

Rost, M., Acheson, E., Kühne, T. et al. Palliative care in Swiss pediatric oncology settings: a retrospective analysis of medical records. Support Care Cancer 26, 2707–2715 (2018). https://doi.org/10.1007/s00520-018-4100-x

Download citation

  • Received:

  • Accepted:

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1007/s00520-018-4100-x

Keywords

Search

Navigation