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Experiences in palliative home care of infants with life-limiting conditions

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European Journal of Pediatrics Aims and scope Submit manuscript

Abstract

The aim of this study was to determine the distinct issues neonates/infants with life-limiting conditions and their families face during palliative home care and to enable physicians/caregivers to carefully address their needs. Data on home-based palliative care of all neonates and infants, who were being taken care of by our paediatric palliative care team between 2007 and 2014, was analysed. A total of 31 patients (pts) were analysed. The majority of patients (n = 17) were diagnosed with congenital malformations or chromosomal abnormalities. Twenty pts died, five of them in hospital. A high percentage of pts presented with swallowing incoordination (83.9 %) and was fed either by nasogastric tube or percutaneous endoscopic gastrostomy. Of the pts, 71.0 % were treated with analgesics, 45.2 % were oxygen dependent, and 9.7 % required mechanical ventilation. Highest mortality was seen in pts with perinatal complications (75 %). In four (12.9 %) pts, palliative home care could come to an end as their conditions substantially improved.

Conclusions: Palliative treatment of neonates/very young infants with terminal conditions at home seems to be similar to that of older children and feasible in children even with unstable conditions. The spectrum of diagnoses, signs and symptoms varies from older children with swallowing incoordination and artificial nutrition being of particular importance.

What is Known:

• Only very limited data on home-based palliative care in neonates and young infants exist; data from Germany are still completely lacking.

• A recent Polish study showed neurological symptoms and dysphagia being the most common clinical problems of infants in a palliative home care setting.

What is New:

• Perinatal home-based palliative care can similarly to older children be offered to neonates and infants with life-limiting diseases and unstable conditions.

• Artificial nutrition and PEG tube placement is of particular psychological importance for parents but should be thoroughly discussed in each individual case.

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Abbreviations

ICD-10:

International Statistical Classification of Diseases and Related Health Problems (ICD-10)

PEG:

Percutaneous endoscopic gastrostomy

PPCT:

Paediatric palliative care team

Pts:

Patients

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Acknowledgments

The authors would particularly like to thank all families entrusting the end-of-life care of their children to the PPCT and all members of the PPCT for their deep commitment. We gratefully acknowledge the funding of the PPCT’s work by the Elterninitiative Kinderkrebsklinik e. V.

Authors’ contributions

MK conceptualised and designed the study, carried out the initial analyses, drafted the initial manuscript, revised the manuscript and approved the final manuscript as submitted. GJ designed, coordinated and supervised data collection, reviewed and revised the manuscript and approved the final manuscript as submitted. JH, SH and AB critically reviewed and revised the manuscript for important intellectual content and approved the final manuscript as submitted.

Compliance with ethical standards

Conflict of interest

The authors declare that they have no competing interests.

Ethical approval

The study was approved by the local ethics committee.

Author information

Authors and Affiliations

  1. Department of Paediatric Oncology, Haematology and Clinical Immunology, Medical Faculty, Centre for Child and Adolescent Health, University of Duesseldorf, Moorenstr. 5, 40225, Duesseldorf, Germany

    Michaela Kuhlen, Jessica I. Höll, Arndt Borkhardt & Gisela Janßen

  2. Department of General Paediatrics, Neonatology and Paediatric Cardiology, Medical Faculty, Centre for Child and Adolescent Health, University of Duesseldorf, Moorenstr. 5, 40225, Duesseldorf, Germany

    Hemmen Sabir

Authors
  1. Michaela Kuhlen
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  2. Jessica I. Höll
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  3. Hemmen Sabir
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  4. Arndt Borkhardt
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  5. Gisela Janßen
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Corresponding author

Correspondence to Michaela Kuhlen.

Additional information

Communicated by Patrick Van Reempts

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Kuhlen, M., Höll, J., Sabir, H. et al. Experiences in palliative home care of infants with life-limiting conditions. Eur J Pediatr 175, 321–327 (2016). https://doi.org/10.1007/s00431-015-2637-y

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  • DOI: https://doi.org/10.1007/s00431-015-2637-y

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