An ex-26 week gestation, 11 year old with spastic quadriplegic cerebral palsy, was admitted to PICU after elective spinal fusion surgery (T2 – S1) for correction of progressive neuromuscular scoliosis. He has a background of severe global developmental delay, dystonia, seizure disorder, cortical blindness and a ventriculo-peritoneal shunt. At the time of surgery he was non-ambulant, non–verbal, PEG-fed, and unable to make purposeful movements. He demonstrated no understanding of verbal communication, but smiled when touched, and used other facial expressions to communicate mood. He was dependent on a carer for all activities of daily living, required regular suctioning, and had an 18 h per day care package at home.

During the peri-operative period, the patient suffered high cervical cord and brainstem infarcts. He became unable to manage his oral secretions, with a weak cough, absent gag reflex, and intermittent hypoventilation. He was dependent on invasive ventilatory support.

Multidisciplinary team opinion was that the patient’s quality of life was so poor that long term ventilation (LTV) via tracheostomy was not in his best interests. Second opinions were obtained from other centres around the country. The child failed a further 3 extubation trials. Plans for proceeding to a legal case were discussed. However, over time it became apparent that opinion from medical personnel had changed. There was a perception that the patient had recovered to his baseline level of functioning, albeit now with flaccid quadriparesis, and that his facial expressions may intermittently be purposeful and appropriate. After 6 months invasively ventilated in intensive care, the family remained adamant that their son had “the right to every form of care”. In view of the lack of consensus amongst the multidisciplinary group, the patient received a tracheostomy and referred for LTV.

Issues for discussion include

• What kind of patient is it NOT appropriate to ventilate long term via a tracheostomy?

• Is a patient’s level of neurological function relevant?

• When is death in a patient’s “best interests”?

• Who are the best people to make this judgement?

• Whose decision is it, to withdraw or continue invasive respiratory support?

• Is the cost of treatment important in the clinical team’s decision making process?

• Is the apparent loss of paternalism in the NHS sustainable?