Sunday, October 14, 2012

What about the seriously ill or disabled people who want to live?

The "Liverpool Pathway":  "It comes down to this: there are a lot of people who believe that, rather than trying to help their loved ones, hospitals have been keen to kill them off."

What about the seriously ill or disabled people who want to live?

By Stephen Doughty, 12 October 2012 6:56 PM

We have heard an awful lot about the suffering of people who bear terrible afflictions or disabilities and who wish to die. We have heard very little about the desperately sick who want to live, and the families who stand by them in hope.

It is looking like we have got this the wrong way round.

The highly organised campaign for assisted dying has brought together pressure groups, think tanks, celebrities like Sir Terry Pratchett, and some fairly prominent politicians, notably in recent years Tony Blair’s Lord Chancellor and one-time flatmate, Lord Falconer.

It has been based around a brilliantly conceived series of legal cases in which the judiciary have been presented with deeply affecting hard cases. Each one has asked for a modest legal concession, usually involving human rights and the 1961 law that makes helping with a suicide a serious crime.

The individuals who have brought these cases are sometimes merely sympathetic and at others pitiable, as in the recent instance of Tony Nicklinson, the 58-year-old victim of 'locked-in syndrome' who lost his call for help from his doctor to die in the High Court in August. Mr Nicklinson died a few days after his legal defeat.

Occasionally the legal campaigns have scored successes. The most notable was that of multiple sclerosis sufferer Debbie Purdy, who persuaded the Law Lords that the Director of Public Prosecutions should provide guidance on whether her husband might face prosecution for assisted suicide, were he to help her travel to the Dignitas clinic in Zurich to die.

As a result of the Purdy case, DPP Keir Starmer QC introduced rules on assisted dying prosecutions that mean no-one is likely to be prosecuted, with the risk of a 14-year-jail term, if they help in the death of someone who is a suffering relative or friend, and if they act out of compassion rather than malice or greed.

However you paint it, this is a major change in the law as set down by Parliament, a law which takes no account of the motives of the individual aiding and abetting the suicide.

Indeed, Mr Starmer has brought no prosecutions against anybody from the trail of stricken families who have helped members travel to Switzerland to die.

What is interesting is that, despite all the campaigning, all the high-profile court cases, all the BBC interviews, all the endless hand-wringing about the cruelty of keeping those who are suffering alive against their will, few people seem to want to take advantage of the new right to die.

We do not have very recent figures, but I would guess that no more than 200 British people have died at Dignitas since the clinic became well-known here in 2003.

It is a number small enough to raise the question of how big, really, is the demand for assisted dying?

The campaign for assisted dying has certainly been effective in influencing care of the incapacitated in the Health Service.

It was surely a factor in the successful passage of the Mental Capacity Act, pushed through by Lord Falconer in the teeth of a rebellion by backbench Labour MPs, which gave legal status to living wills. These mean people can leave orders for their doctors to kill them by withdrawing nourishment and fluid by tube if they become too sick to speak for themselves.

The assisted dying campaign formed the background to the introduction of the Liverpool Care Pathway into hospitals across the country. This, for those who have not noticed, is the system by which medical staff withdraw treatment from those judged to be close to death, in the cause of easing their passing. It often involves heavy sedation and the removal of nourishment and fluid tubes.

I do not wish to try to step into the shoes of those medical professionals and care workers who deal every day with people at the extreme end of life and in the depths of the worst illnesses. I have no qualifications or knowledge to second guess their decisions, and no intention of criticising those who work with great professionalism and compassion in jobs that are far beyond my capability.

But all the indications suggest there are many families who are unhappy with the way in which their relatives have died in hospitals, and that they are increasingly willing to complain about it.

Many of these people may be speaking out of misdirected grief. As one well-informed MP put it to me this week, very few expect a loved one who goes into hospital to die, but people do have the habit of dying. Some of those complaining may be troublemakers, some inspired by political or religious agendas.

Nevertheless there seem to be a lot of them. And they are not celebrities or legal grandees or Westminster faces. They are little people, people like you and me, not the kind you usually hear on the radio or see on the TV.

The courageous Professor Patrick Pullicino, the hospital consultant who defied the NHS consensus to speak out against the Liverpool Care Pathway this summer, reckoned it is used in around 130,000 deaths each year. That is a number that dwarfs the assisted dying lobby.

I think we are going to hear a lot more about the Liverpool Care Pathway, and I think the medical professions, the Department of Health, and a number of politicians are going to have to put some time into considering what has been happening.

It comes down to this: there are a lot of people who believe that, rather than trying to help their loved ones, hospitals have been keen to kill them off.

They believe that, while the assisted dying lobby has been parading in the courts and publicising itself on the BBC, assisted dying has quietly become a reality in our hospitals.