Death, dignity and distrust

In A Good Time to Say Goodbye? – a report by BBC1’s Panorama last night on the arguments for and against assisted dying for the terminally ill, ahead of the House of Lords debate on Lord Joffe’s Bill to legalise assisted suicide in the UK this Friday – we saw Diane Pretty in tears in 2002, after she was told that the European Court of Human Rights had refused an appeal which would have allowed her husband, Brian, to help her commit suicide.

As she travelled to London for a press conference, at which she would tell the world of her reaction to the decision, Pretty’s distress at the ruling was clear. I was at that press conference in 2002 and remember thinking how much the Prettys must have cared for and loved one another. But I also thought that the way in which Diane Pretty’s personal response to having motor neurone disease became a public story about life and death revealed something telling about how we view humanity today.

The Panorama programme revealed that both sides in the assisted dying debate have a deep distrust of each other, and particularly of those who work in the medical profession. While I sympathised with cerebral palsy and MS sufferer Gill Gerhardi’s assertion that legalised suicide may encourage people to give up when there is no reason to do so, her claim that most doctors tended to view her as a ‘second-class citizen’ – and that if Joffe’s Bill is passed doctors would seize on her moments of depression and encourage her to do away with herself – was totally unconvincing. I have never met a doctor who was secretly skulking in the wings waiting for the right time to bump off people with cerebral palsy and MS. Have you?

Yet this degraded view of doctors was not confined to someone who may have had a bad experience with the medical profession as a disabled child. Lord Brennan QC, a fierce opponent of the assisted dying Bill, warned ominously that this would be ‘only the beginning’, presumably of something bad. Professor Ilora Finlay, who put a strong case for palliative care, also went for the slippery slope argument, attacking the assisted dying Bill as a ‘health economist’s dream’. Eh?

There was a deep sense of mistrust in the arguments for the Bill, too. The very fact that the private relationship of trust between doctors, patients and their families has given way to a public battle for the ‘right to die’ suggests that this private relationship is seen as a problem, something that needs to be formalised. Sophie Pandit told the story of her mother, Dr Anne Turner, who was diagnosed with the incurable and degenerative brain disease progressive supranuclear palsy. She chose to travel while still relatively well to Switzerland, where it is legal to assist non-nationals to commit suicide, at places such as the Dignitas clinic.

Dr Turner’s fear, it seems, was that by the time her illness reached an unbearable point she would be too ill to commit suicide by herself, and therefore she had no choice but to travel to Switzerland to commit suicide while she was still able to. Her personal story became an appeal to change the law to allow terminally ill patients to die at home if they wish. But the irony is that the suspicion of doctors and other medical professionals is eroding the very relationship of trust between doctors and patients, which is where the decision to end an individual life must be worked out and where it has been, informally, for many years.

But it is the death mercenaries at Dignitas whom we should be most suspicious of. They pretty much sell the message ‘abandon hope all who enter here’ with cups of tea and some touchy-feely aplomb. In a recent interview in The Sunday Times Magazine, Dignitas founder Ludwig Minelli revealed that it is not only the terminally ill who should be helped to commit suicide – he thinks we need to get rid of the taboo surrounding suicide in society more broadly (1).

Indeed, Dignitas helped a British couple, Robert and Jennifer Stokes, neither of whom was suffering from a terminal illness, to die in ‘each other’s arms’ in April 2003. As one report put it: ‘Neither was suffering from a terminal illness, but both had a history of mental illness and failed suicide attempts. Robert Stokes, 59, suffered from depression and had up to three epileptic fits a week. Jennifer Stokes, 53, suffered depression and inoperable spinal pain owing to a car accident; she was also diagnosed as diabetic.’

How have we ended up pathologising depression, much less diabetes, as an insurmountable human ailment? We understand mental and physical disability and disease better – both medically and socially – than ever before. But once we remove the decision to die from a relationship of trust between a doctor and patient and place it in the hands of legally sanctioned death professionals such as Dignitas, then we are surely turning the clock back on human progress and how we relate to each other. We should recall that the founder of Dignitas recently said of a 21-year-old suffering from depression, who had hitchhiked to Dignitas to discuss his suicide, that ‘yes, he was only 21, but in nature many animals do not reach maturity….’ Thankfully, the 21-year-old decided that life was worth living after all.

If there is one lesson to be learned from the assisted dying debate, and the individual stories that we see and hear in relation to this debate, it should be one of hope and renewed belief about what it is that makes us human – that we can care and cure as individuals and as society.

Read on:

In spiked-TV last week, Daniel Ben-Ami on The Happiness Formula.

(1) A Date with Death, Sunday Times magazine, 16 April 2006