Hazel McHaffie

It’s Not Because I Want To Die

Starving to death in Britain

She was a political activist from her teen years. But Debbie Purdy rose to fame when from her wheelchair she pleaded for – and won – clarity on assisted dying in 2009. Her memorable comment: “Being allowed to die would help me to live” summed up her thinking. She loved life, even with its significant difficulties, but the current law was leading her towards deliberately ending that life sooner than she would choose. Sad then that in reality, her end was a far cry from the dignified autonomous finale that she fought for in the courts.

She actually died on 23 December, before my last two posts went out, but it didn’t seem an appropriate note for Christmas time or Hogmanay, so I postponed it till today.

Debbie Purdy diesDebbie was only 31 when she was diagnosed with primary progressive multiple sclerosis. 31. She was 51 when she eventually died. 20 years of living with a severely disabling painful disease – outlined in her 2010 autobiography, It’s Not Because I Want to Die. When she appeared before journalists and the public she made no secret of her personal wish to go to Switzerland to die when life became unbearable; all she wanted was assurance that her Cuban husband, Omar Puente, (black, foreign and poor, so, she feared, particularly vulnerable) would not be prosecuted if he assisted her to get there. Her jubilant face when the House of Lords gave that reassurance lives in the memory. Assisted dying wasn’t yet legal but she could now live her life to the full and she was in no hurry to go.

But, when that point of unbearable suffering came, she could not afford the journey to Switzerland. Instead she went into a hospice, where she ended her life peacefully … no, starved herself to death. It took a whole year! How can this possibly be right? Even a few days before her death she was filmed saying if a cure became available she would be first in the queue for it, such was her wish to live. But not at all costs: “It’s not a matter of wanting to end my life. It’s a matter of not wanting my life to be this.” Harrowing to see her emaciated frame, hear her reluctance, feel her fear – you can watch it here if you can bear to. I can’t begin to imagine what it must have been like for her relatives and friends, and indeed those caring for her, to watch her deteriorate in this horrible way. Nor the courage and determination on her part to stick to her resolve for that long.

Advocates of a change in the law have capitalised on this story, drawing attention to statistics which seem to point inexorably in their minds to change: 60-70% of the public want it; legal and ethical opinion has swung in favour of it; two terminally ill people a month go to Switzerland to end their lives; ten times that number kill themselves secretly at home; to name but a few figures. It’s only religious zealots and medical authoritarianism that are holding us back, they claim; surely the best tribute to this indomitable campaigner would be to legalise assisted dying.

I’ve stated my own opinion elsewhere on this blog; I won’t rehearse it again here. Suffice to say I have my own reservations, my own tentative solution. But the very fact that, in this 21st century, in our affluent and democratic country, after two decades of mental and physical agony, a young woman took a year to die from starvation, must surely give every one of us pause for thought. What’s your definition of torture?

If not an assisted dying bill, what? In a decent civilised society we cannot stand back and allow such scenarios to be reenacted.

 

 

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Assisted dying wrapped in silk

Photo courtesy of Photolia

Image courtesy of Fotolia

Joanna is a young woman in constant pain. She’s tetraplegic following a car accident, totally dependent on others for her every need 24 hours of every day, and facing the prospect of another 20-30 years in a similar state. A bright nimble brain in a paralysed body. Trapped. She isn’t physically able to end her own life; the law doesn’t allow her to be killed by others. No wonder she’s depressed.

But so too, is her mother Sarah, trapped with her. She asserts that her daughter said on many occasions, ‘If you loved me, you’d kill me,’ although, as the prosecuting lawyer reminded her, ‘We only have your word for that.’ And yes, Sarah is in court because she has admitted to killing Jo with a lethal cocktail of drugs.

On the surface it looks like a straightforward battle about the morality of helping someone to die. It’s not until Sarah is under questioning that her own defence lawyer senses something is wrong with her testimony. Who is she protecting? What did actually happen in that bedroom?

That was the essence of the story in the courtroom drama, Silk, on BBC1 on Monday 10 March. It’s a programme I enjoy watching normally – although I confess the private shenanigans between the characters often make me cringe. When the topics creep into my areas of particular interest I’m doubly hooked. And this particular storyline was particularly timely because the papers at the weekend were predicting significant developments in the legalisation of assisted suicide. In the next airing of the Assisted Dying Bill, due in a few months, Conservative and Liberal Democrat MPs and peers – including Coalition ministers – will be given a free vote on the Bill that would enable terminally ill patients to be helped to die. And although neither the prime minister nor his deputy are in favour of a change in the law, the Government has now made it clear that it would not stand in the way of such a Bill where strict safeguards are in place. (Incidentally Joanna wouldn’t qualify as she’s not terminally ill, though she is in constant pain.)

Of course, opposition remains. Doctors, disability campaigners and church leaders are still cautioning that a relaxation in the law could put vulnerable people at risk, and damage the doctor-patient relationship. Furthermore, it’s argued, this is a dangerous time to consider a relaxation because of ‘an atmosphere of growing hostility towards disabled and elderly people‘ in the wake of the recession.

Is there ever a good time? Which way would you vote? Given your own circumstances? Or if you were Sarah, experiencing at first hand the impact of extreme disability of your beloved daughter, and on the rest of the family? Or if you were Joanna herself, facing unremitting pain and indignity for the rest of your life?

At the same time as this play was airing, I was reading Debbie Purdy‘s book, It’s Not Because I Want To Die. You’ll remember she’s the doughty fighter with MS who fought through the courts for the right of her husband to help her die at a time of her choosing, without fear of prosecution. And as the title of her book suggests, she contends that the reassurance that he would not be prosecuted means that she can prolong her life with impunity – prolong not shorten, please note. But, wait a minute … the new Bill wouldn’t help her either because she’s not terminally ill. Hmmm. So who exactly needs new legislation?

I’m with a certain AMS Hutton-Wilson writing in the letter pages of the Telegraph on 11 March: ‘The people most in need of a change in the law are not the terminally ill but those who, although still mentally capable of making an informed judgment and expressing it clearly, have had their quality of life profoundly compromised by conditions leading to an inability to talk, swallow or breathe without difficulty.’

What would you do about them?

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