Libby Purves
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The story of Daniel James is almost unbearable. Paralysed in a rugby scrum, he made several suicide attempts and finally persuaded his parents to take him to the Swiss Dignitas clinic to end his life. At 23.
His parents have been questioned by police; what happens next is anybody's guess. Since its inception Dignitas has left the British legislature mortally confused. Take Debbie Purdy, who has multiple sclerosis: she has challenged the Director of Public Prosecutions to state unequivocally whether or not her husband will be charged with assisting suicide (a 14-year sentence) if he takes her there, when she decides the time has come. Ms Purdy robustly says that, if the answer is yes, then she will go alone - and therefore much sooner. If he is in the clear, she can enjoy her remaining time. She deserves that clarity.
Earlier cases have produced only mutterings of “insufficient evidence” or “no public interest”, which is not enough to reassure the couple. The sooner the DPP decides, the better. Nor would this small step take us as far as Lord Joffe's proposed Bill on assisted deaths: allowing people to take the dying to Switzerland would be a typical, and not entirely toxic, temporary fudge until Britain grows up enough to debate the issue without the usual alarmism and political cowardice.
But Debbie Purdy has an incurable degenerative disease and all she wants is permission to shorten the last painful months. Knowing there is an escape route might be so comforting that you never use it. Many terminally ill people willingly live each day, particularly if they get palliative care and comfort from the hospice movement rather than suffering in a stressed, overlit general hospital. But the law on Swiss-bound helpers must be clarified. Dignitas will not be un-invented.
However, assisted dying is not the same thing as assisted suicide. Even in Switzerland it is illegal to help a healthy but depressed person to die. There have been some troubling cases: three years ago a couple with chronic but not fatal illnesses ended their lives there, to their family's horror; more recently a healthy German woman faked a medical certificate to do the same. In an unnerving comment the Dignitas leader, Ludwig Minelli, admitted that six clients were depressed rather than terminally ill, and said: “We should accept that when nature produces human beings there are mistakes, not only physical but mental mistakes.”
Whoa! Mistakes? The danger with euthanasia enthusiasts is that they develop an unwholesome keenness to tidy up the world by killing off those who can't appreciate it properly. It is at this point, oddly, that Lord Joffe's Bill becomes attractive: it applies only to the terminally ill, and if the “assistance” was taking place in the UK we could monitor it with our own values, whatever we decide those are. I doubt that Daniel James would have got his wish in those circumstances, not least because only 18 months - eight in hospital - had passed since his accident. One would wish anyone, at any age, more time to reflect: most suicide attempts in the newly paralysed (mostly men) come in the first year. They need intense support, example and information from outside the family as well as within. But even that might not have changed his mind, and legally harassing his stricken parents is in nobody's interests.
But thinking about Daniel James, something else occurs with force. The humane creed of disability rights, with its vocabulary of challenges and being “differently abled”, may have a less helpful side-effect. It may blind us to the utter, visceral awfulness of confronting a major disability, especially when young. As civilised people we do not allow ourselves to flinch at a half-wrecked body in a wheelchair; yet the flinch and the fear are still there inside. Actually, one reason I enjoy sailing with the mixed able-bodied and disabled crews of the Jubilee Sailing Trust is that, after 24 hours of lurching about and having your hat blown off, the barrier of shyness and pity evaporates. We are all shipmates, each limited in our own way, and fine about it.
But we should not prattle on about fulfilling lives, Paralympians, Stephen Hawking and the rest if it makes us belittle the terror and self-disgust of a fit young person, paralysed. No amount of pious wittering about the Disability Community should blind us to that psychological impact.
In the early 1980s Stewart Yesner, paralysed in a car accident, founded the International Spinal Research Trust (now Spinal Research). I met some of the founders: young men crippled by their own daring in cars or sport or the military, who in an equally gung-ho spirit resolved to throw their energy into supporting research on spinal nerves. Much medical opinion strongly opposed such “false hope”, insisting that it was necessary to encourage a fulfilling wheelchair life and never speak of cure. The young men ignored this, and adopted a daring logo of a wheelchair user rising. Their work has certainly advanced - though not completed - medical knowledge on spinal regeneration. They did it with humility, knowing that the answer might come too late for them; they showed larky macho humour, undertaking feats such as the Big Push (Land's End to John o'Groats in wheelchairs). They faced the grimness of paralysis, but shook their fists at it.
Listen to Simon Barnes, who broke his back on an assault course at 21 and then worked with the charity. On the website he describes: “A constant struggle against an excessive share of difficulties, frustration and fear... it's tough to live with a body that only half works. You need to have an inexhaustible strength of spirit... the most painful part of being paralysed for me is missing out on the overwhelming fulfilment that comes with a loving sexual relationship; those are the feelings that help define us as human beings and often lead to the beginning of new life.”
Yet 20 years on, he concludes: “Even though I would jump at the chance to get back all the things that paralysis has taken away from me, I'm starting to appreciate that the spirit can carry us through real heavy stuff.”
It can. As the Anglo-Saxon poet wrote: “Let the spirit grow stronger, courage the greater, will the more resolute, as the strength grows less.”
But never for a second should the rest of us take shallow comfort - or rush to condemnation - by lightly assuming that every new victim should stay the course and mutate into a cheerful paralympian or a saintly philosopher. It's very, very hard.
Libby Purves worked for some years for BBC Radio 4, as a reporter and a presenter on the Today programme and, since 1983, has presented Midweek. She joined The Times as a columnist in 1990. She received an OBE in 1999 for her services to journalism and was Columnist of the Year in the same year. In her spare time she writes bestselling novels. Her opinion column appears in the The Times on Mondays
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I don't see the point of anyone being forced to live out a life in which they are in pain whether it be emotional or physical.Whilst the writer points out that being paralysed isn't a reason to end one's life,why should someone be forced to live out a life where they are unable to even move.
Suzanne, Manchester, Lancashire
I find it ironic that grown adults can't be allowed to make a choice to end their life when they are in pain and suffering - be it physical or emotional - yet it is allowed for them to kill an innocent baby whilst still in the womb,when it is also a person.
Suzanne, Manchester, Lancashire
The law should permit assisted dying (to be carried out by qualified doctors) if the patient is in the final stages of terminal illness, has the desire to end their life, is mentally capable of making that decision and the decision has been approved by two separate doctors.
Amy Davies, Richmond, England
People, especially relatives can be extremely emotionally manipulative, how do you know a choice was made free of some subtle duress? Assisted suicide is unlawful in this country, and those engaged in this activity criminals.
kevin, Lincoln, UK
my mother died twelve years ago. she was very disabled by Parkinsons disease for many years and had zero quality of life for the last eighteen months at least. If euthanasia had been available I am sure she would have wanted it, but i am equally sure I could not have gone through with it.
Carol, Harrow, UK
The modern push for euthanasia has its roots in Eugenics, one of the most horrible chapters in modern medicine. If the "right to die" ideology is accepted, then similar lines of reasoning will follow, and those lines lead to the doors of a place like Dachau.
Ben Schonewald, Tucson, Arizona
To wish to die because of intolerable chronic suffering is not and should not be a crime nor forbidden. To call the wish to die a crime or forbid the victim's wish IS a crime.
SanYing, Montreal, Canada
My uncle has had Huntington's Disease for 20 odd years and for the past five his quality of life has been zero to none. A decade ago my father died an agonising death from lung cancer. I heartily wish euthanasia was legal in all OECD countries.
Deborah Marshall, Brisbane, Australia
I have a job that requires me to be around folks that are actively dieing. As a infant struggles to come into life,for some it is a struggle to leave it. Who decides? Hitler had no problem deciding.As other cultures of death. We must chose life or we become barbaric and eugenics is the instrument
Libby, salem, usa
There is a clear policy on Euthanasia. It's called MURDER, and it's illegal.
Steve, Bristol,
I certainly believe that people of all ability levels should have the right to die on their own terms. If we eliminate the pressures on those who are forced into feeling like our lives are less worthy, then assisted suicide becomes an ethical option. Currently there would be pressure on people.
Rebecca, USA,
I'm an able bodied girl whose ex-boyf is a paraplegic. I broke up with him because he was too sporty for me! He water & snow skiied, & played tennis & basketball - I couldn't keep up! Yes, paraplegia can be demoralising in a world built for able bods, but it's not the end of a fulfilling life.
Michelle, London, UK
The only people whose opinions count on this are the people who might one day have cause to want euthanasia legalised. Let the severely disabled have the debate. Similarly, women alone should be the ones discussing abortion. After all, an embryo is not a tumour-like life sentence for a man is it?
Alba, Southampton,
My grandmother died in a hospital in pain, fading away to nothing, kept alive only by a nasal drip, when she really did not want to continue living. It's disgusting, we would never allow an animal to suffer in the manner in which we allow humans to, why shouldn't people be allowed to choose to die?
Helen, Sheffield, UK
I fully believe in euthenasia and believe it should be legalized. How can a governmental body or a legal system tell you what you should do with your own life? That is absolutely crazy. Legalize euthenasia now. God will allow you into Heaven once saved...
michelle, Pensacola, USA
My father, in his 80s, now is both mentally and physically frail. Living in a small nursing home, he cannot walk and wears a diaper. He says he has had a wonderful life but has no future. He prays each night that he will not wake up in the morning.
John, , USA
If I kill myself quickly with a gun it's suicide but if a company sells me the products to do it slowly (say, with cigarettes) then it is commerce. What a peculiar world we live in.
Clare, London, UK
Graham Morris,Newark- I totally agree with what you are saying.
Chris Pilkington, Hassocks, UK
We all have the right to commit suicide - taking moments or hours to die by our chosen method. By not making provision for a disabled person who has the mental but not physical capacity to do the same we are discriminating against him/her. The only option left-starvation is an inhumane way to die!
Andy, London,
Why is it the middle-aged women columnists who are so keen on this? Do they really dislike their parents that much?
Stephen, Twtichen, Shropshire
Doctors don't "save lives" because everybody dies, at best they merely extend life, and they have no right to torture someone for the remaining period of their life. A robust process is required to allow the humane and diginfied passing of someone who wishes to go, and to protect those who assist.
Chris, Derby,
Dear Libby, You can be disabled and live a worthwhile life. But
those want to change the law, base their case on this is wrong. It is we the disabled, that are doing the prattling. We
do not want to live in yourt Brave New World.
Gerald R.C.Hildreth, Wimbledon, Great Britain
If I had a dog that was incurably ill and I left it to suffer until it died naturally, I could be prosecuted for cruelty as I didn't take it to the vet to be put down humanely. If a person is incurably ill, they have to suffer until they die naturally, even if they don't want to. Why is this right?
Sheena, Somerset ,
Be careful what you ask for. If DPP says they WILL prosecute, how does that help Ms Purdy? DPP cannot say they will not prosecute. Parliament makes law, not CPS. Declaring that a law will not be enforced will lead to chaos. This law exists to protect those who feel pressured to die, I agree with it.
John, london, UK
Doctors do assist people to die. Consider my father. In a hospice with terminal cancer, he was not in pain just discomfort from a body riddled by caner. He did not need strong pain killers but was given a form of morphine which gently pushed him over the edge. The year? 1978.
James B, France,
While there is life, there is hope, or there should be. I wish the focus was on doing everything possible to make life good for people who have to adapt to severe disability. It takes a long time to rebuild a life, it happens a day at a time. The fragility of life makes it all the more precious.
Siobhan, Thoiry, France
There are two wellsprings of our culture. In the Classical tradition, it was clear that there could be a time to die, and a good death, for your own sake rather than as religious martyrdom. In the Christian tradition, that notion was lost. We need to recover the Classical tradition.
Richard Baron, London,
The saga of the Abortion Act, which despite 'guarantees' it would not be abortion -on- demand has become just that with a foetal holocaust. should act as an awful warning. 'Legalised' euthanasia would be abused wholesale; no doubt some state body would label some not 'cost effective' therfore ...
Dr J Findlater, Carnforth,
It is not just a matter of oppinion, I may wish to dye but the point is, should we legalize a culture of death? shouldn't we looking for means and tools and methods to make people's life bearable and happy? Love is free but isn't it true we just can't be bothered with it? more so if it hurts
Carmen, London,
I find it strange that we are ready to criticise a person who has decided for themselves to take a course of action that ends their life, yet society readily accepts abortion, where the child in question has no say in the matter!
Graham Morris, Newark, Nottinghamshire
Derek, London UK - here here! Well put - am with you entirely on this one, but would like to add that pain can be mental, not just physical - as I'm sure you meant. I can't imagine how anyone can even begin to pontificate - most of those who do are usually able-bodied and free of any terminal illnes
Sarah, Dordogne, France
Thankyou for an objective article that incites me, the reader, to actually consider the people who are making these decisions; rather than the judgements we make concerning them.
Seb, Trowbridge,
Typical HMG, turn Britain into a seriously awful country in which to live and then start getting concerned about suicide, euthanasia and variations in between. Has to be an option being considered by those that have seen their pension and seen their retirement plans go down the drain. Surprised Boot's don't offer a "Goodbye Cruel World" DIY kit. But really all you need is a bottle whisky and a large packet of paracetamol.
Andrew Milner, Karuizawa, Japan
Having seen this in my own family..each 'case' is different...like a 'finger print'.. No 2 alike....Hospics were wonderful for my family case...
Mr Tim, san marcos, U S of A
Euthanasia can be helpful for the state for it reduces expenditures towards sufferers of terminally ill diseases.However i personally think that,the process of euthanasia must take place after clear reasons and explanations with proofs are obtained to prevent its abuse.
zdrift E, Goodlands, Mauritius
I'm always bemused (appalled, actually) how those who tut tut about easy dying usually won't be affected in any way by a fellow citizen's easy death (or their life, for that matter) but they'll tut tut nevertheless!
Paul Neri, Canberra, Australia
Clive of Surrey is right. Ms. Purves accepts terminally ill but appears to be drawing a line, or trying to, on others, the recently disabled or chronically ill, from deciding for themselves. As far as I am concerned, the individual has the right to determine what they want to do.
Jamie, Washington DC, USA
My dear old friend, a war hero, decided at the age of 83 that he had enough. He was an Air Commodore highly decorated and did not wish to spend his last days in pain. He just stopped drinking water and just drank whisky. The gestapo could not break him, so no one else would be able to. New law now.
m wilson, bidache, France
Here's a clear policy - it's for an individual, not the state, to decide when they don't want to go on living. Easy, isn't it.
Yes, we have to protect the elderly/infirm from others making decisions for them/pressuring them, but sane individuals should be able to kill themselves lawfully.
Clive, Surrey,
How unfortunate humans do not come equipped with an on-off switch. When you've had enough
you could go out on your own terms.
Bruce L. Northwood, Washington, D.C., USA
When I hear people sanctimoniously pontificating about how terminally ill or severely disabled human beings should not have the right to end their lives my blood boils! How passive aggressive is that! Human rights should include the right to end our own lives when we are in incurable pain.
Derek, London, UK