Many people were taken by surprise in March 2006 when the English High Court went against the recommendation of all of the medical experts (14 consultants, including one called on behalf of the family) and rejected an application to withdraw artificial ventilation from 18-month-old MB.¹ The patient has type 1 spinal muscular atrophy. The court heard that except for some, barely perceptible, movement of his eyes and possible, slight, movement of his eyebrows, corners of his mouth, thumb, toes and feet, he could not move. He could not breathe unaided and required positive pressure ventilation via an invasive endotracheal tube and was fed through a gastrostomy tube. The judge, Mr Justice Holman, accepted that there was no hope of any improvement in his condition and that his condition would inevitably deteriorate. The regular interventions required to keep MB alive caused him discomfort, distress and, in some cases, pain. Although unable to express this in any meaningful way, his heart rate would suddenly rise, his eyebrow would move slightly and sometimes he produced tears.

The parents argued that, despite his disability, MB was able to experience pleasure from his existence, which outweighed the burdens and any discomfort or pain. They said he recognised them and his siblings and appeared to gain some pleasure from being with them and from watching certain DVDs or listening to music. In rejecting the application of the National Health Service Trust to withdraw artificial ventilation, Mr Justice Holman accepted that “there is almost relentless discomfort, periods of distress and relatively short episodes of pain … It is indeed a helpless and sad life” (paragraph 100¹). But, he said: “I must proceed on the basis that M has age appropriate cognition, and does continue to have a relationship of value to him with his family, …