Hazel McHaffie

Debbie Purdy

Dignifying death

QuestioningTomorrow the Assisted Dying Bill is back before the House of Commons yet again. I wonder if your views have changed since it was last debated.

It’s an age old question, isn’t it? 500 years before the birth of Christ, Euripides wrote: ‘I hate the men who would prolong their lives / By foods and drinks and charms of magic art / Perverting nature’s course to keep off death / They ought, when they no longer serve the land / To quit this life, and clear the way for youth.’

And here we are, 2600 years later, with an aging population, limited resources and vastly improved medical capability. Globally, the number of over-65s is expected to triple by 2050, with all that that implies. Of course, no politician will ever advocate that those who ‘no longer serve the land’ should choose suicide. But many aged and infirm people would choose death for themselves rather than indignity or slow decline or suffering. I’ve known many such – one just this week. And yet the current law prohibits assisting them towards that end. Is this a safeguard or a shackle?

During the Festival last month I went to a show which dealt with the quandary elderly folk can find themselves in: specifically not wanting to be kept alive, not wanting to be taken into hospital/care, not being listened to. In the drama, by the Jealous Whale Theatre, terminally ill Wendy’s grandson, Edmund, pleads with the authorities to respect her wishes; but the powers that be insist that there are ‘safeguarding’ issues and their hands are tied. In the end Edmund takes matters into his own hands, smothers his gran with a pillow, and then sits quietly waiting for the consequences. Cleverly performed in the intimacy of a ‘Wendy House’, it forced the audience into close proximity with the protagonists and their moral dilemmas. The play resurrected a lot of the old questions for me.

I'll See Myself Out, Thank YouEarlier this year I also read (and reviewed on this blog) ‘I’ll See Myself Out, Thank You Afterwards I went to the internet and looked at videos about people who have made a choice one way or the other. I was staggered by the number available, and had a rather depressing day watching them all, especially the touching scenes of farewell with loved ones. I don’t recommend it!

But I thought I’d give you the links to a selection of them just in case you want to select any to help you think through the arguments for yourself. I apologise for the imbalance; I’d have liked to be even handed, but far more pro assisted death than against seem to commit their views to video.

The last days, hours, minutes of a person’s life before they took the lethal dose, explaining their position and support for assisted suicide.

Cocktail of drugsCraig Ewart

Brittany Maynard

Man with AIDS in Oregon

Michelle Causse

Peter Smedley with Terry Pratchett attending

John Elliott

Susan Griffiths

Dr Donald Lowe

Gloria Taylor

People who wished they’d had this opportunity but hadn’t

Debbie Purdy

Convicted killer in Russia

Relatives grateful that their loved ones did have this chance of escape

Brother of an American

Mothers who wished to or did take the lives of their children.

Mother wanting to end life of two disabled adult children

Mother who did kill daughter

Patients lingering for years and years in an appalling state while everyone felt powerless to release them

Indian nurse sodomised and almost strangled

Several illustrative cases put together

Elderly viewpoints

The lengths friends and family would go to to support the settled wish of a patient

Two friends dying only one of whom was ill

Disabled people opposed to assisted suicide

Man with ALS

Disabled man

Disabled Alison Davis

(PS. Many years ago I was on a special committee with Alison Davies debating whether or not extremely small sick babies should be treated or allowed to die with dignity. We all found it very difficult to argue against Alison because it felt like devaluing her life. She’s still an ardent campaigner and a powerful voice decades later. And I’m still writing about the subject!)

Speaking of age, I want to add my own wee tribute to Her Majesty Queen Elizabeth II who yesterday became our longest ever reigning monarch. Watching this little old lady still performing her role with dignity, grace and an exemplary sense of duty at the age of 89 is both humbling and inspirational. God bless her.

, , , , , , , , , , , , , , , , , , ,

Comments

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.

 

 

, , , , , , , , , ,

Comments

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?

, , , , , ,

Comments

Assisted suicide – revisited

Serious week. Calls for a serious blog. Especially from the author of Right to Die.

Because assisted suicide hit the headlines again this week, big time, and some of my readers have contacted me about it. Prompting me to offer a couple of comments.

First the Royal College of Nursing officially withdrew its opposition to seriously ill patients seeking help to end their lives. It’s important to note that the RCN is not saying it approves the practice; full stop. Of the roughly 30% of their members who participated in their recent consultation exercise, 49% supported assisted dying; 40% opposed it. What the College is recognising is the variation in opinion amongst the health care professionals who work most closely with very sick patients, and the public mood.

The plan now is to issue guidance to help nursing staff to have a properly informed discussion with those who broach the subject with them. I just hope this process won’t take too long. What about all those patients and families who read the headlines; misread the signs; and confront unprepared nurses?

And there’s another issue which isn’t often raised. Nurses are certainly very close to terminally ill patients, but they aren’t the ones who actually do the deed or write the prescription. Important distinction.

The RCN news coincided with a poll in The Times – carried out a week after the conductor Sir Edward Downes and his wife died at the Dignitas clinic on July 10 – which found that 74% of people (well, Times readers anyway) want doctors to be allowed to help their patients in this way. If you’re one of the people who say assisted suicide should be legal, ask yourself: would you be willing to carry it out? Actually help someone to die, I mean. And if you wouldn’t, can you justify requiring others to do so?

Now today the Law Lords have issued a milestone ruling. Debbie Purdy, a lady with Multiple Sclerosis who has been campaigning for clarification of the law on assisted suicide has, they say, the right to know if her husband will be prosecuted if he helps her end her life. Guidance must be provided. The Director of Public Prosecutions has promised to issue an interim policy later this year. Ms Purdy herself says, this is not about a right to die but a right to live longer; if her husband is able to help her she will not be forced to end her life prematurely to protect him.

As I say, a serious week. Major challenges. Worrying questions. No easy answers.

, , , , ,

Comments