The Charlie Gard case: the importance of professional ethical reasoning

When it comes to caring for children with complex needs, ethical reasoning must exist beyond gut feelings and intuition. 

When it comes to caring for children with complex needs, ethical reasoning must exist beyond gut feelings and intuition 

Charlie Gard’s parents Connie Yates and Chris Gard. Picture: Getty

The media coverage of Charlie Gard will likely have challenged all nurses and healthcare professionals to consider their moral views, as professionals and as individuals.

Perhaps considering whether it is right for Charlie’s parents, and now the courts, to consider an experimental therapy when his medical team argue that it is in his best interests to receive only palliative treatment. 

At the heart of this decision is an infant who cannot breathe for himself, open his eyes, move his limbs, suffers seizures and is cognitively impaired to such an extent that his doctors can only identify that he feels pain and has no chance of any meaningful recovery. It would be wrong to assume this information from media coverage; these are the findings of the courts that have heard this case up until now.

‘Caring for children with such complex needs – where withdrawal of treatment is considered – is a part of many nurses’ professional practice’

Bound by obligations

Charlie’s parents are in an unimaginable situation and there can be nothing but heartfelt empathy with their position. However, the notion that the courts are depriving them of their rights as parents to act in Charlie’s best interests is unjust.

The gut feeling of most people, whether healthcare professionals or not, is that where there is hope then all is not lost, which may give the illusion that a potential ten per cent chance of functional cellular improvement is preferable to death.

However, healthcare workers are bound by their professional and legal obligations to the child’s welfare as a paramount concern and accept that this may not always be in agreement with parental views.

The medical team caring for Charlie have considered all of the clinical evidence to come to their conclusion but so too will they have considered the ethical implications of continuing or withdrawing treatment.

Building bridges

Ethical reasoning must exist beyond gut feelings and intuition, requiring healthcare professionals to consider all of the issues involved with a case even when they may as individuals disagree.

The Charlie Gard case is nothing but sad and catastrophic for his parents, but caring for children with such complex needs, where withdrawal of treatment is considered, is a part of many nurses’ professional practice.

The role of nurses in building bridges between parents and the medical team when disagreements occur is important, but so too are the professional opinions of the same nurses in contributing to reasoned ethical decision-making.

‘The notion that the courts are depriving Charlie’s parents of their rights to act in his best interests is unjust’

Determining best interests

What then does being reasoned mean and how can a nurse be reasonable in these most difficult situations?

The answer can only be found when intuitive feelings are replaced with an argument that has considered the position of parents, the position of the medical team and the fundamental obligations to the welfare of the child. In Charlie Gard’s case the decision has been taken out of the hands of his parents and the medical team caring for him because of the disagreement in determining his best interests.

A core attribute though of being reasonable is the ability to review continuously one’s position and not be afraid to reconsider it, which is exactly what Great Ormond Street hospital have done in asking the court to consider new evidence and support the assessment of Charlie by the US neurologist who is developing the nucleoside therapy.

While any evidence given after this may or may not change the court’s decision, the issue remains as to what is in Charlie’s best interests and not the best interests of his parents. The case therefore serves a poignant reminder to nurses and all healthcare professionals of the importance of reasoned ethical decision-making being fundamental to providing patient-centered care. 

About the author

Ed Horowicz is senior lecturer in the faculty of health and social care, Edge Hill University, Ormskirk, Lancashire

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