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Ethical issues with artificial nutrition of children with degenerative brain diseases

Alfried Kohlschütter1, Carolina Riga2, Dolores Crespo2

  • 1Department of Pediatrics, University Medical Center Hamburg-Eppendorf, Hamburg, Germany.

Biochimica Et Biophysica Acta
|March 22, 2015
PubMed

Insights

Decisions about artificial nutrition for children with neuronal ceroid lipofuscinoses (NCL) require informed parental consent. Careful dialogue between families and professionals ensures these difficult choices are made ethically and acceptably.

Area of Science:

  • Pediatric Neurology
  • Bioethics
  • Medical Ethics

Background:

  • Neuronal ceroid lipofuscinoses (NCL), also known as Batten disease, are rare genetic neurodegenerative disorders.
  • Children with advanced NCL often lose the ability to communicate, complicating medical decision-making.
  • Ethical considerations surrounding artificial nutrition are paramount in managing pediatric neurodegenerative diseases.

Purpose of the Study:

  • To explore ethical viewpoints on artificial nutrition for children with NCL.
  • To define the 'best interest' of patients unable to communicate their desires.
  • To establish guidelines for decision-making regarding artificial nutrition in pediatric NCL.

Main Methods:

  • Workshop discussion at the 14th International Congress on NCL.
  • Analysis of author viewpoints and audience comments.
  • Review of ethical considerations for pediatric neurodegenerative diseases.

Main Results:

  • Consensus that parents, with adequate preparation, should make nutrition decisions for children with advanced NCL.
  • Decisions regarding artificial nutrition are highly individualized.
  • Prolonged dialogue between families and professionals facilitates rational and acceptable decision-making.

Conclusions:

  • Informed parental consent is crucial for artificial nutrition decisions in pediatric NCL.
  • Ethical care requires a supportive and communicative approach between families and healthcare providers.
  • A checklist can aid in navigating complex ethical decisions for artificial nutrition in NCL.

Keywords:
Childhood dementiaInborn error of metabolismNeurodegenerationVital support

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