Commentary: Little real choiceBMJ 1996; 313 doi: https://doi.org/10.1136/bmj.313.7050.155a (Published 20 July 1996) Cite this as: BMJ 1996;313:155
- Hugh Newton-John, staff physiciana
Home care of the long term mechanically ventilated patient is not new.1 Few hospital based teams, however, would be sufficiently innovative to embark on such a venture without previous experience. In the case of this child such was apparently the case, and a most satisfactory outcome resulted.
Two questions can reasonably be asked about the child's management. Firstly, how could the process of discharge from hospital to home have been improved? Secondly, should she have lived longer?
A paediatric intensivist may resuscitate a child with acute respiratory failure only to discover later that there is an irreversible chronic ventilatory defect and that lifelong ventilation is inevitable. This ethical dilemma has been described by some as “entrapment,” and it is an inevitable consequence of the success of modern critical care units. Something of the sort happened in this case. The initial delay in obtaining a specific diagnosis was largely due to the reluctance of all concerned to come to terms with the reality of her situation. It took three hospitals and 14 months before the first multidisciplinary case conference. Later delays, caused by the management team starting from scratch in their planning of the child's home care, could have been minimised had the team taken advice from other units experienced in this field.
I think this child died from progression of her disease and chronic aspiration from the upper airway. I doubt if much more could have been done for her. There has been successful use in selected cases of non-invasive (nasal mask) ventilation of children at home, but only when there is no risk of aspiration. Tracheostomy was the only practical option. Unfortunately, even in an older person ventilated with a cuffed tracheostomy tube, aspiration and eventual death from pneumonia are inevitable when there is progressive pharyngeal failure.
While the “trapped” intensivist may well experience an initial regret along the lines of “I should have let her die,” I know of no case where a conscious ventilated child has later been killed by deliberate withdrawal of the ventilator. In these situations compassionate human beings find themselves with very little choice.
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