Hazel McHaffie

Multiple Sclerosis

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

A sabbatical?

My enforced inactivity continues as doctors try to find out why my heart is doing crazy things. Those who know me best recognise the potential frustration for someone used to living life at a hundred miles an hour, and they’ve been kindly plying me with distractions of various kinds, helping to keep me sane and functioning at some level.

West Wing DVDs

So, for example, a complete boxed set of the drama West Wing has kept me sitting down for countless hours. Plus it’s given me a new perspective on life at the top of politics in a country the size and structure of the USA. But it also includes fascinating glimpses into the world of … medical ethics no less! Everything from: should a president reveal that he has Multiple Sclerosis and is experiencing lapses in concentration? and should his doctor wife be allowed to treat him secretly? … to: what use could be made of evidence that praying for patients’ recovery influences outcomes? Issues of infant mortality, postcode lottery in medicine, autonomy and Alzheimer’s, confidentiality, jumping the queue for organ donation, medical capacity, assisted dying, mind control experimentation … they all become useful material in the hands of a skilled scriptwriter. This particular programme doesn’t follow through any of these issues as I would, (it makes no claim to do so) but that in itself is thought provoking.

Val McDermidWhen the dizzyness prevents me sitting up and watching a film, listening to something interesting beats lying idle feeling every erratic heartbeat. Radio 4’s Book of the Week last week was Val McDermid‘s Forensics: the Anatomy of Crime about which I wrote a couple of blog posts ago. Val herself reads this abridged version of her book and gives a fascinating glimpse into the way that the dead and the scenes of crimes speak. She takes the listener into houses devastated by fire or a shooting; she peers at the insects and poisons which tell their own story; she traces the life of history’s most prolific female serial killer, and the Sausage King of Chicago who tried to dispose of his wife’s body in the processing plant, as well as appalling miscarriages of justice. Snippets that really whet the appetite for more. And all told in her distinctive Scots voice.  Once again I’m hugely impressed by the depths to which this bestselling crime writer goes in order to authenticate her plots and the sheer scope of her knowledge. (Hurry if you want to hear these 15 minute excerpts – they’ll soon be unavailable.)

So this month of illness might well have wiped my diary free of appointments and activities but I’ve been learning valuable lessons: the art of simply being still, to value thinking, to make the best of my limited abilities. And hardest of all: patience. Maybe I should simply reconstruct the events of the last four weeks as a sabbatical as advocated in these tips for creative thinking.

 

, , , , , , ,

Comments

New Year, new impetus

Well, it’s here! 2011. And a very happy New Year to you all.

The bells rang, the pipes skirled, 80,000 people partied in the streets of Edinburgh to the thunder and shimmer of thousands of pounds worth of fireworks … and yes, it is worth saying, because the official celebrations have been cancelled before, and the jolly old weather certainly threatened to be agin us this time.

Six years ago we took a party of guests to our usual vantage point shortly before midnight and … waited … and waited … and well, nothing happened. Apparently there were ‘safety concerns’. In our embarrassment and frustration we instantly thought Thou-shalt-not-play-conkers-without-safety-helmet-plus-padded-gloves-plus-visors writ large. But nobody wants a fatality for the sake of a mere pyrotechnical spectacular, and we learned later it was something to do with a dodgy roof and the strength of the wind. At least that was the official version.

But it’s not just dynamite that has ignited the change to a new year. The bells have been ringing for other major shifts close to my heart. Indeed the news during this past seven days has been jammed full of my kind of subjects. In no particular order (as they say on ‘talent’ shows) …

Organ donation included on driving licence applications
From July drivers applying for a licence will be asked to indicate which of the following applies to them:
Yes, I would like to register on the NHS Organ Donor Register
• I do not want to answer this question now
• I am already registered on the NHS Organ Donor Register.

It’s an official step towards increasing the pool of donors. Around 90% of people favour donation but only 27% are registered donors. And given that about 1,000 Britons die each year for want of an organ, and thousands more wait an indecently long time for one, we need to do something. Maybe there should have been one more question:
Would you be prepared to receive a donated organ for yourself or someone you love?
The novel I’m writing just now is about organ donation so I can get quite fired up on the subject.

Sir Elton John has become a dad
Put aside for a moment any qualms about the 63-year old temper-tantrum-on-short-legs with a £290,000 flower habit as a role model, and disregard the rumours about payment to ensure the birth happened on 25th December as the ultimate Christmas present, and think instead of the whole picture of a financial arrangement between an unknown surrogate mother in California and an aging, overweight, homosexual with dubious priorities. And spare a thought for the resultant offspring: Zachary Jackson Levon Furnish-John.
Admittedly the pop star did try recently to adopt an HIV-positive toddler from a Ukrainian orphanage, but he was denied on the grounds of his age, and the fact that his civil partnership with David Furnish was not recognised. So what isn’t good enough for an abandoned Ukrainian is suddenly acceptable for Zachary? Hello? How many tribunals in this country would grant permission for such an arrangement without the pressure of fame and fortune, I wonder? OK, it did become legal in April here in the UK for two men to have a child by a surrogate and to have both their names on the birth certificate. But we aren’t talking about your average ordinary man here. Children are not commodities. Nor are they fashion accessories.
Surrogacy was the subject of my 2005 novel, Double Trouble.

A nine-year old becomes a bone marrow donor
Robert Sherwood is only nine. His brother Edward is just five. But Edward has aplastic anaemia; his bone marrow fails to produce sufficient new blood cells. Robert’s donation has the potential to save his brother’s life. But … should he have been subjected to this procedure before the age of informed consent? Does the end justify the means? Should he be permitted to say no?
It’s the bread and butter of my working life!

A grandfather has become the first to donate an organ to a grandchild
John Targett, aged 59, couldn’t bear to see his little one-year-old grandson growing sicker and sicker as a result of biliary atresia. So he offered part of his own liver and had the operation just before Christmas. What a gift: the gift of life.

Another British person has ended his life in Switzerland
Andrew Colgan was only 42 (not much older than my son) but he’d suffered from Multiple Sclerosis for ten years and his condition had markedly worsened recently. He died in that now infamous Dignitas room in Zurich. My own feeling is of immense sadness that this young man had been desperate enough to go abroad for a solution to his terrible dilemma.
I really agonised over these questions for Right to Die; I’m still struggling with them three years after publication.

Volunteers keep libraries open
A new report has revealed that libraries in England are increasingly being staffed by volunteers, to prevent closure under cost-cutting exercises. And this at a time when it ought surely be a priority to make books available to those struggling to find employment or to make ends meet. Books can change lives. Penny-pinching in this area is surely stealing vital resources from the future.
Hundreds of people only read my books as library copies. I want them to continue to have this opportunity. It represents something much more exciting than sales figures.

Bishops defend the rights of Christians
Lord Carey, former Archbishop of Canterbury, has urged the prime minister to review the laws which discriminate against Christians in our supposedly-Christian country. And the Bishop of Winchester has reinforced this message. We’ve all heard about the airline worker denied the right to wear a crucifix; the couple denied the opportunity to foster children because of their religious scruples; and the bed-and-breakfast proprietors who won’t take same-sex couples in double rooms in their guesthouse. The law does seem to have sided against ordinary Christians following their consciences.
Religion is closely interwoven with law and ethics and this subject too is a matter of ongoing interest to me.

There was something too about managing Alzheimer’s more cost effectively but I can’t seem to find that. No, it’s NOT a joke about dementia: I genuinely can’t. I looked and in the search found this site which might be comforting for those people struggling alongside this disease. But in the absence of a link to the news item I was looking for, I didn’t want to ignore another topic that I’ve delved into in depth for one of my novels, Remember Remember, because of course, it leapt out of the page at me.

So you see, just in a few days I’ve had my belief that people do care about ethical dilemmas reinforced over and over again. A great spur to another year of writing.

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

Comments