Editor's blog 12th November 2008: 11 / 11 news and the right to death

Two pieces of news on 11th November made me cry, but only one of them made me want to be sick.

The anniversary of the end of the First World War needs few words, other than it was not the one that made me feel sick.  That was the immensely depressing and saddening story of Baby P in Haringey, North London, whose mother, over and a lodger were convicted of 'causing or allowing' Baby P's death. The details are extremely upsetting.

It isn't possible to write effectively and with any insight abut such an issue when you are still hot with anger about it. I am not going to try. There is no doubt that child protection work is difficult and complex, and revulsion at the guilty should not blind us to difficulty and complexity.

From the killing of a small child to the right to die - another notable health item was the ending of a PCT court case following on from the refusal by 13 year-old Hannah Jones to go ahead with suggestions for a heart transplant. Interestingly, news reports of Herefordshire PCT trying to force her to be treated were denied as a "misconception" by the PCT's representatives, speaking to BBC News TV.

The BBC News website story reports that "her father Andrew said he and his wife supported her decision but they had been upset by the PCT's actions. He said Hereford County Hospital's child protection team had contacted them in February threatening to remove Hannah from their care if they did not bring her to hospital for the operation".

This is confusing. As commissioner, the PCT is responsible for the actions of its providers - and the hospital's child protection team. Hannah was apparently offered the option of being listed for transplant in July 2007, but declined after consulting doctors and finding out that success could not be guaranteed and that she would be on anti-rejection medication for life.

Likewise, the BBC website story quotes Sally Stucke, a consultant paediatrician at Herefordshire Primary Care Trust, as saying that this had been "an extremely complex case ... No one can be forced to have a heart transplant." If so, why was there a High Court case?

The BBC website story suggests that "the trust intervened after a locum GP raised concerns over her with the child protection team".

As a society, we are very scared of death. It is one of the inevitable by-products of the decline of religious faith. Unfortunately, this fear of death, when combined with officious attitudes, can lead vicariously to officious medicalisation around the end of life.

The cases of Debbie Purdy, and before her that of Diane Pretty demonstrate, as does Hannah Jones', that we cannot assume it is only the elderly who will face these issues (and of course, the elderly's views don't matter because they're going senile, so they don't really know what they want ...)

There is much need for a debate about consent to end-of-life decisions. The barrier between proper medical concern and improper paternalism exists and matters. And it is double-edged - if individuals want to opt out of medically-advised end-of-life treatment, they need to be clear of the responsibility they are choosing to take on themselves.

But patient-centred care may involve uncomfortable moments for healthcare professionals. The definition of the 'harm' that Hippocraes says we first must not do is a crucial starting point.

It has not been a good day in the news for health and social care.