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Who decides?

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Louisa Davies considers the difficult decisions that health professionals may have to make when considering a child’s care.

Louisa Davies

Louisa Davies

Working in nursing involves making tricky decisions. Children’s nursing especially involves a huge amount of compassion and sensitivity, as the majority of the time you are not only caring for the child, but supporting the whole family as well.

There has been a case in the media recently that has divided opinion on end-of-life care. In my training so far I have not worked with any end-of-life patients, nor have I learnt about the issue in university (as the relevant module is taught in our final year).

However, following the media coverage of the case I mentioned above, and watching the recent Channel 4 documentary My Baby’s Life: Who Decides?, I decided I wanted to educate myself and learn more on the matter.

Palliative care involves treating the physical, psychosocial and spiritual needs of patients and their families facing life-limiting illnesses and requires the coordinated efforts of the multidisciplinary group of caregivers.

But what if the family and healthcare professionals involved disagree?

The main debate in children’s end-of-life decisions revolves around ethics versus science. The Channel 4 documentary argued that just because something is possible, does that mean it should be done?

Many medical professionals now feel that due to scientific and technological advances, more children can be kept alive for longer, but that their quality of life is not necessarily worth such intervention.

However, some parents and families, understandably, feel that to not explore every option to sustain their child’s life is equivalent to “giving up on them”.

The most common method to striking a balance between parental and medical opinion has been that any decision made must be in the child’s best interest. But determining what is in the child’s best interest can be problematic. 

Through research I came across ‘the zone of parental discretion’. This is an ethical tool for dealing with disagreements about medical treatment for a child. The main idea behind this is that professionals accept parental decisions that are suboptimal for the child, as long as the decisions do not involve probable harm to the child.

What I have learnt is that there is no easy or right answer in this area of nursing. Each child’s life decision must be taken on an individual and holistic basis.

By continuing to learn and explore all options, we as health professionals can find more ways of working ethically through difficult situations.

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