Failure and success in severe gastrointestinal disease complicating neurodisability: who is at the end of the line?

PN-related complications are more likely in families who are disadvantaged and unsupported. 3 In addition, while children receiving home PN can have a good QOL, the negative impact on the family is such that the same is not always true for parents. 4 A recent framework from the Royal College of Paed...

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Bibliographic Details
Published in:Archives of disease in childhood 2017-05, Vol.102 (5), p.391-392
Main Authors: Puntis, John W L, Hills, Michelle
Format: Article
Language:English
Subjects:
Adolescent
Anatomy
Cerebral palsy
Child
Child Health
Children & youth
Childrens health
Decision making
Disabled Persons
Families & family life
Family Environment
Gastrointestinal Diseases
Humans
Illnesses
Learning Problems
Medical prognosis
Nutrition
Pain
Palliative care
Parenteral nutrition
Parents
Quality
Sepsis
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Summary:PN-related complications are more likely in families who are disadvantaged and unsupported. 3 In addition, while children receiving home PN can have a good QOL, the negative impact on the family is such that the same is not always true for parents. 4 A recent framework from the Royal College of Paediatrics and Child Health (RCPCH) considers when it might be ethically permissible to limit treatment in life-limiting and life-threatening conditions, describing situations where individuals should be spared inappropriate invasive interventions. 5 There should be full discussion with family, high-quality care must be maintained and any decision made to limit life-sustaining treatment (LST) should be based on the same considerations whether or not the child has disability. [...]here they are identifying uncertainty about prognosis, which hampers discussion about what the future might hold.
ISSN:0003-9888
1468-2044
DOI:10.1136/archdischild-2016-312237