Parenteral nutrition in children with severe neurodisability: a panacea?

Mutalib, Mohamed

doi:10.1136/archdischild-2020-319278

Cited by 2 publications

(8 citation statements)

References 28 publications

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“…Previous reasons for arguing that PN was not appropriate for this patient group no longer hold. The risks of LTPN to the child are less and the evidence for the unbearable burden (on the child and family) of intolerance of enteral feeding grows 1–4 13 15 18. Parents now routinely perform complex care for their children at home 2 3 10–13.…”

Section: Discussionmentioning

confidence: 99%

“…Complex feeding issues are increasingly described in these patients but currently lack clear diagnostic criteria 1 4 13. Vomiting, pain, abdominal distention and diarrhoea result in the gastrointestinal tract not being usable for feeding—in other words, intestinal failure 1–4 13. For these children, feeding failure has joined respiratory failure as a new end-of-life issue.…”

Section: Childhood Survivors With New Morbidities and The Rise Of Sup...mentioning

confidence: 99%

“…Yet clinicians may hesitate to prescribe PN. As noted by Wahid et al 2 and Mutalib,3 clinicians’ concerns include uncertain benefits for the child weighed against the high burden of care and perceived poor quality of life associated with reliance on medical technology. However, in this high-stakes context of escalating medical support to prolong life, the concept of stopping feeds entirely and pursuing a palliative path may seem inconceivable to parents.…”

Section: Childhood Survivors With New Morbidities and The Rise Of Sup...mentioning

confidence: 99%

“…Risk is ethically relevant, but the medical risks associated with LTPN, such as liver disease and central line sepsis, have markedly reduced with improvements in PN solutions, central line care and multidisciplinary nutrition support teams 13 14. This reduction in risk, coupled with possible benefits (not just in length of life but also in relief of symptoms of feeding intolerance), of LTPN for children with SNI suggests case-by-case consideration is needed and the net benefits may outweigh the burden 3. In addition, a greater understanding of the lived experience of feeding intolerance in these children would allow a more holistic evaluation of the balance of risk versus benefit of LTPN.…”

Section: Analysis Of Clinician Hesitancy To Commence Ltpn In Children...mentioning

confidence: 99%

“…Children with SNI are living longer and experiencing more gastrointestinal morbidity 1 2. However, clinicians remain hesitant to consider LTPN when enteral feeding fails in these patients 2–4. In this article, we describe and synthesise5 the available literature which cites reasons for this reluctance.…”

Section: Introduction: Crossing the Line?mentioning

confidence: 99%

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Crossing the line? Ethics of parenteral nutrition in paediatric neurodisability complicated by intestinal failure

2022

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Children with severe neurological impairment (such as cerebral palsy or congenital anomalies) are living longer, although medically complex, lives. Feeding intolerance is an increasing problem that is emerging as a new end-of-life issue. Long-term parenteral nutrition (LTPN) is technically feasible in these children. However, clinicians are concerned about whether it is appropriate in these circumstances or whether it constitutes a treatment ‘too far’. This narrative review of the literature identifies, categorises and explores the ethical foundations and reasons for clinician hesitancy about the use of LTPN in this population. The categories of reasons are: lack of clear diagnostic criteria for feeding failure; risks of LTPN to the child; burden of LTPN to the family/caregivers; burden of LTPN to the child; difficulty in cessation of LTPN; and the concept that feeding failure may be a preterminal sign. These reasons are all ultimately about risks and burden outweighing the benefits. We argue that the risks of LTPN have decreased over time, the burden for individual children and their parents may be less than imagined, and the benefit is a realistic prospect. Case-by-case consideration, giving due weight to child and parental perspectives, can show that LTPN is ethically justified for some children with severe neurological impairment.

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Section: Discussionmentioning

confidence: 99%

Section: Childhood Survivors With New Morbidities and The Rise Of Sup...mentioning

confidence: 99%

Section: Childhood Survivors With New Morbidities and The Rise Of Sup...mentioning

confidence: 99%

Section: Analysis Of Clinician Hesitancy To Commence Ltpn In Children...mentioning

confidence: 99%

Section: Introduction: Crossing the Line?mentioning

confidence: 99%

See 3 more Smart Citations

Crossing the line? Ethics of parenteral nutrition in paediatric neurodisability complicated by intestinal failure

2022

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Parenteral Nutrition in Pediatric Patients with Neurodisability: Current Perspectives

White¹,

Mutalib²

2023

PHMT

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Pediatric neurodisability describes functional limitations in children with varied severity and complexity often attributed to brain or neuromuscular abnormalities. The life expectancy of children with neurodisability is improving, but many will require significant medical support. The gastrointestinal tract is usually affected in children with neurodisability and can lead to a wide range of symptoms. In gastrointestinal (GI) dystonia, a newly coined term, feeding will trigger a distressing dystonia and symptoms can improve with cessation of feed. Parenteral nutrition (PN) is often viewed as a viable option in severe GI dystonia or when enteral feeding does not support sufficient nutrition. The use of PN in children with severe neurodisability is complex. It involves an intricate interplay between medical, psychological and ethical factors. In the absence of a universally agreed guidance on the use of PN in this cohort, paediatricians should maintain the individual need of the child at the centre of the decision-making process and work closely with families and other healthcare professionals before initiating or withholding PN in children with severe neurodisability. In this article, we discuss the complex and multifaceted approach to the use of PN in children with severe neurodisability and aimed to explore the medical, psychological and ethical aspect dilemmas facing clinicians looking after children with declining gut function who may require PN support.

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Parenteral nutrition in children with severe neurodisability: a panacea?

Cited by 2 publications

References 28 publications

Crossing the line? Ethics of parenteral nutrition in paediatric neurodisability complicated by intestinal failure

Crossing the line? Ethics of parenteral nutrition in paediatric neurodisability complicated by intestinal failure

Parenteral Nutrition in Pediatric Patients with Neurodisability: Current Perspectives

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