Trisomy 18 ethics papers


These are papers discussing the ethics of treating Trisomy 18 and similar life limiting conditions. They can be useful when arguing that treatment is not only likely to prolong life but is an ethical choice to make.


Ethical language and decision making for prenatally diagnosed lethal malformations (Wilkinson D et al) 2014
 Paper discussing the language physicians use when discussing 'lethal' conditions and ethical decision making. Cautiously supports intervention in some cases. UK/Australian paper.

Trisomy 18 and complex congenital heart disease: seeking the threshold benefit (Boss et al) 2013
An article on a prenatally diagnosed infant with T18 and a complex heart condition (DORV, undersized left ventricle) with parents requesting full treatment. Discusses the ethical issues the medics and parents confronted and how they were handled. Agreement for treatment was reached.

Fatally flawed? a review and ethical analysis of lethal congenital malformations (Wilkinson D et al) 2012
Article exploring the concept of 'lethal' congenital conditions. Discusses whether many of these conditions can be legitimately described as 'lethal' when there are some long term survivors and also the concept of medical futility. Suggests more accurate counselling for parents and avoiding the use of the term lethal in counselling and guidelines.

Knowing when to stop: futility in the intensive care unit (Wilkinson D, Savalescu J) 2011
An article on defining futility and when treatment should be withheld. Considers the ethics and different ways of managing the dilemma of what is futile and what is not.

Lethal Language, Lethal Decisions (Koogler et al) 2003
Key paper on how assumptions around length and quality of life affect medical decision making for children with life limiting conditions and how these assumptions can in effect lead to a self fulfilling prophecy eg children with T18 die young so no point in treating them but not treating them means they die young. Useful paper to give medics to reflect on.

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