The right model for killing yourself

"Martin" is 46 and has locked in syndrome He's asking the courts to clarify the law so that doctors and other medical staff who might help him end his life would not  be prosecuted.

This is an extension of Debbie Purdy's case, from two years ago. Purdy successfully argued in court that it was a breach of her human rights not to know if her husband would be prosecuted for assisting her suicide if he accompanied her to a clinic in a country where assisted suicide is legal.

"Martin's" case extends this to doctors and other medical staff, rather than lay-people. His wife has accepted his decision, but does not feel able to assist him.

At least 10% of suicides in the UK are by people with a chronic or terminal illness, and coroners believe that people are increasingly killing themselves at a younger age rather than wait until they are in severe pain. Some coroners avoid probing into what they suspect might be a case of assisted suicide, to avoid causing problems for those left behind.

So why do all these people with long-term illnesses feel that the appropriate response to their circumstances is to kill themselves? (Either with or without help). Opinions, inevitably, differ.

Some argue that the decision is made because the condition - the illness, the disability, whatever - has become too much to bear. Others say that these feelings are often because the individual has not had the chance to live as independent a life as possible within society at large.

The individual's condition on one side and society on the other. That sounds very familiar. And yes, it's our old friends the medical and social models of disability again.

Which is more important in an someone's decision whether they want to live or die?  The way their physical disability affects them as an individual, or how easy it is for disabled people to be part of mainstream society?

Just to be upfront, I have no intention (in the foreseeable future) of seeking assisted suicide. But as I've told you in a couple of posts recently, I've been having major problems getting out because of physical problems. At the moment, the accessibility or otherwise of society is kind of irrelevant to me, and my physical impairments are totally primary. At other times, or for other people, the physical problems may be secondary to accessibility, housing problems or employment discrimination.

So overall, I think sometimes the medical model is the right one and sometimes the social model. Or, at least, there's a continuum. At one end is "pure" medical model thinking, at the other end is "pure" social model thinking. Most of us are somewhere in the middle, and we move back and forward along the continuum depending on circumstances. (It's made of nice slidey material. Makes it easy.)

The vast majority of us could never kill ourselves, in any circumstances. And if someone is considering it, whether that decision is rational or irrational is a whole other packet of Jaffa cakes. For those few who have decided to seek assisted suicide though, reasons differ. And that fact must be acknowledged by the disability community.

Suicide tourism: it's no holiday

An important vote took place recently in Zurich. The electorate were asked whether assisted suicide clinics like Dignitas should be allowed to continue offering their services to people from outside the area.

Switzerland has allowed assisted suicide since 1941, as long as it is not performed by a doctor, and the person helping has no vested interest in the death. Because assisted suicide remains illegal in much of the rest of the world, clinics like Dignitas have grown up to help visitors to the area to die.This is suicide tourism - people wanting help in dying travelling around the world to areas where assisted suicide is legal.

The founder of Dignitas, Ludwig Minnelli, claims that of those accepted as patients by Dignitas, over 70% never actually use their services. They do not plan to die, but are seeking insurance in case their illness becomes intolerable.

There’s a particular dilemma for people with progressive conditions who feel they may want to take their lives at some time in the future. Do they kill themselves now, when they don’t want to die but are still physically able to do so? Or do they wait until they feel the “right” time has come, by which time they’re no longer able to do the deed? I believe that this is why some people with progressive, non-terminal conditions seek out clinics like Dignitas.

In some cases, people want to die precisely because their condition is not terminal. They cannot bear the thought of their situation continuing indefinitely.

Jack Kevorkian, an American pathologist, claims to have helped at least 130 people to end their lives. After a videotape he had made showing him helping someone to die was shown on television, he was convicted of second degree murder. He was released from prison on parole in 2007.

Kevorkian claims to be an advocate for the terminally ill, but critics have discovered that at least 60% of those he helped to die were in fact not terminally ill. Counselling was apparently perfunctory, with no psychiatric examination, and at least 19 patients died within 24 hours of meeting Kevorkian for the first time. In at least 17 of the cases, with people complaining of chronic pain, Kevorkian did not refer them to a pain specialist. In three cases, autopsies showed no anatomical evidence of disease at all.

The data on those helped by Kevorkian also show some concerning anomalies. A substantial majority of his "clients" were female, and most had a disabling, long-term, non-fatal illness. Many listed MS as their reason for seeking death. Why were women with MS so much more likely to seek Kevorkian's services than others?

Reasons for seeking Kevorkian's help included having a disability, pain, and "being a burden". This last is particularly concerning. It would be all too easy, for instance, for interested parties to make a disabled person, already oppressed by society's attitude to disability, feel that they were a "burden" and should seek to die.

By his extreme and possibly biased actions Kevorkian has done the assisted suicide movement no favours. Any legalised assisted suicide scheme needs robust safeguards to make sure that those seeking its help have received counselling, have had the chance to receive good quality palliative care, and as far as possible have the chance to lead a full and fulfilling life.

The result of Zurich's vote? Suicide tourism can continue in the city. Over the Atlantic in the USA, it  has been reported that Kevorkian, now 82, is in hospital with pneumonia and kidney problems. I wonder whether, and if so how, his views have changed as a result of his own ill health?