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The timing and circumstances of the implementation of pediatric palliative care in Hungarian pediatric oncology

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Abstract

Despite the continuous improvement of pediatric palliative care, medical professionals still face various barriers regarding its implementation; our aim was to investigate this question in Hungarian pediatric oncology practice. Structured interviews were carried out in person with physicians from the Hungarian Pediatric Oncology Group (n = 22). Codes were generated inductively with the aid of Atlas.ti 6.0 software. Most physicians placed the palliative care discussion at the end of curative treatment (n = 21) and preferred to conduct it in a team setting (n = 18), mainly in the presence of a psychologist. Preparing parents for the child’s death can occur during the palliative care discussion (n = 3), in the child’s final days/h (n = 6), gradually (n = 10), or never (n = 3). There are words consciously utilized and avoided during this discussion, with the word “death” proving to be the most ambivalent (utilized n = 5, avoided n = 6).

Conclusions: There is no widely accepted unified practice among pediatric oncologists concerning the implementation of palliative care in Hungary. Despite the international recommendation, the common practice of timing is still at the end of curative treatment. Physicians rely on multidisciplinary teamwork, where the psychologist’s role is the most prominent in this discussion.

What is Known:

• There is an international consensus that palliative care should commence at the diagnosis of a pediatric malignant disease regardless of illness outcome.

• Barriers to the early implementation of palliative care in pediatric oncology involve resource-based and attitudinal factors.

What is New:

• In Hungary, where pediatric oncologists are sole decision-makers, early implementation of palliative care is rare.

• There is a strong preference among physicians for working within a team, while also asserting that presence of team members may decrease the level of intimacy.

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Abbreviations

Int.:

Interview

PC:

Palliative care

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Authors and Affiliations

  1. Institute of Behavioral Sciences, Semmelweis University, Budapest, Hungary

    Judit Nyirő, Szilvia Zörgő & Katalin Hegedűs

  2. Klebelsberg Institution Maintenance Centre, Budapest, Hungary

    Földesi Enikő

  3. Second Department of Pediatrics, Semmelweis University, Tűzoltó u. 7-9, Budapest, 1094, Hungary

    Péter Hauser

Authors
  1. Judit Nyirő
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  2. Szilvia Zörgő
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  3. Földesi Enikő
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  4. Katalin Hegedűs
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  5. Péter Hauser
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Contributions

Judit Nyírő conducted and analyzed the interviews, wrote the manuscript, commented on the draft, and agrees on its final wording. Szilvia Zörgő analyzed the interviews, provided methodological background, wrote the manuscript, commented on the draft, and agrees on its final wording. Enikő Földesi evaluated the results, commented on the draft, and agrees on its final wording. Katalin Hegedűs provided expertise in drawing up the research plan, evaluated the results, wrote the manuscript, commented on the, draft and agrees on its final wording. Peter Hauser organized the research, contributed to the evaluation of results, wrote the manuscript, commented on the draft, and agrees on its final wording.

Corresponding author

Correspondence to Péter Hauser.

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Conflict of interest

The authors declare that they have no conflict of interest.

Ethical approval

All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards. This investigation was approved by the Institutional Ethical Committee (Registration code: SE TUKEB 96/2016). This article does not contain any studies with animals performed by any of the authors.

Informed consent

Informed consent was obtained from all individual participants included in the study.

Additional information

Communicated by Mario Bianchetti

Katalin Hegedűs and Péter Hauser are joint last/senior authors

Revisions received: 18 April 2018 / 4 May 2018

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Nyirő, J., Zörgő, S., Enikő, F. et al. The timing and circumstances of the implementation of pediatric palliative care in Hungarian pediatric oncology. Eur J Pediatr 177, 1173–1179 (2018). https://doi.org/10.1007/s00431-018-3170-6

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  • DOI: https://doi.org/10.1007/s00431-018-3170-6

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