Decision Report 201305144

Summary

Mrs C complained to us that the board had given her terminally ill child (child A) a large dose of a muscle relaxant before they were taken off a ventilator. Child A had been receiving a muscle relaxant to improve ventilation (breathing), but was approaching the end of life and care was being withdrawn. We took independent advice from one of our medical advisers, and found that it had been unnecessary to give Mrs C's child a large dose of relaxant immediately before being taken off the ventilator. Our adviser said that this might in fact have hastened child A's death by a short time. The board had also continued to give child A the muscle relaxant after they were taken off the ventilator. This was not in line with the relevant guidance, which said that this should not be done.

Mrs C also complained that staff did not discuss this with her. Although the large dose of muscle relaxant should not have been given, any significant changes that affect the care provided to a child should be discussed with the family/carers. There was a clear failure to do so in this case.

Mrs C made a further complaint that the consultant treating child A did not tell her about this, when she asked him several months later why her child had passed away so quickly. Our adviser found no evidence in the record of the meeting that the consultant told her about the large dose of muscle relaxant. It is imperative that parents are given full and complete information about the care and treatment provided to a child when they request this. There was no evidence that the consultant did so in this case. We upheld all of Mrs C's complaints.

Recommendations

We recommended that the board:

• issue a written apology to Mrs C for unnecessarily giving her child a muscle relaxant before they were taken off the ventilator and for continuing the muscle relaxant after ventilation had been withdrawn; and
• take steps to ensure that their guidance on end of life care for children reflects guidance on muscle relaxants from the Royal College of Paediatrics and Child Health.