organ donation
Sardinia
Taking a break in Sardinia – deemed one of Europe’s most beautiful islands and certainly a haunt of the mega-rich and super-famous apparently. Who knew?
I neither arrived in a massive yacht nor flew in on my personal helicopter, but I can enjoy the same beauty and wallow in the same clear turquoise water, and probably dream up more exciting fictional stories set in this wonderful location to boot!
On my second novel dealing with organ donation too – reading not writing I hasten to add. This is the life!
Theory v practice
I’ve studied the ethical issues around the subject;
I’ve talked to many many people with practical experience as either clinicians or patients or relatives;
I’ve even written a book on the subject – Over My Dead Body.
Yes, I’m talking about organ donation and transplantation.
So I knew the facts in theory, but this past week, I’ve had personal experience of the process, and I am impressed in a new and much more profound way by those who commit to this.
Years ago I wrote my own Advance Directive, and to witness it I chose a dear friend, a doctor, who would understand the significance of what I wanted in the event I couldn’t speak for myself – someone I could trust to ensure everything was legal and watertight and fully carried out. We shared so many values. He was twenty years younger than I, so I expected him to outlive me. But last week it was he who suffered a catastrophic haemorrhage in his brain from which there could be no meaningful recovery – exactly the kind of scenario I had envisaged for myself – and it was I who stood at his bedside and alongside his family.
He wanted his organs donated, and was on the register. Of course he did; that was the kind of altruistic person he was. But as I well knew, relatives can veto this request if they can’t bear the prospect. This family didn’t hesitate; they were behind his wishes one hundred percent, instantly comforted by the thought that this selfless act would bring new hope to other families. Now, though, I saw at first hand what they must endure in these circumstances. When we offer our organs in this way, how many of us really think what that will mean to our nearest and dearest? In the midst of their shock and grief, they must listen to and answer so many questions, they must spend so much time waiting and watching, and then have that last goodbye controlled by others.
I saw too, the sensitivity, the professionalism, of ICU staff who maintain the body in optimal condition for as long as needed, and of the transplant team who walk the family through the steps, gently, sensitive to their timing as well as the shelf-life of the organs and the desperate need of potential recipients.
In this case neither the family nor the staff could have handled things better. I was in awe of their commitment, their dedication and skill. My friend would have been so proud of them all, personally and professionally. And I have a new respect for anyone who commits to this delicate and painful transaction. They deserve our utmost respect and gratitude.
Farewell, my kind and gentle friend; you have done a most noble thing.
Challenges and choices
The International Arts Festival is currently in full swing in our fair city, and it’s easy to get caught up in the exciting momentum of events and performances. Guilty as charged.
But of course, for many, far far more serious questions beset them than which actors, writers, musicians or artistes to support. I currently have six special people on my worry/prayer list all facing major challenges in relation to their health, life and death.
It’s not appropriate to be specific about them, but perhaps they are behind my extra sensitivity to the difficult choices so many face. For this post I’m thinking of those people who’re involved in the consequences of legal change, medical advances or financial restrictions associated with healthcare – my kind of workaday world. I’ll enumerate but a few (with links) reported in the national press in just 36 hours by way of illustration. All raise a number of thorny issues and I leave you to ponder those for yourself.
Relatives and health care workers caring for patients trapped in unresponsive bodies with minimal or no consciousness no longer need to go to court to resolve the question of withdrawing/withholding life sustaining measures. Decisions about dignified death can be made quietly and privately in a timeous way.
In figures released last month, the first trial of a pioneering immunology vaccine called DCVax has shown some real promise. DCVax essentially uses the patient’s own immune system to fight the tumour, tailoring treatment to their specific needs. This trial has already been running for 11 years and came to public attention when MP Dame Tessa Jowell was not eligible to receive DCVax for her glioblastoma. Sadly she died in May, but not before she had successfully campaigned for increased funding for brain cancer research. To date patients have needed to stump up £200,000 for this treatment.
New National Guidelines, known as Saving Babies’ Lives Care Bundle, have been issued in response to the alarming statistic that 600 babies could be saved from stillbirth annually if the mothers were adequately monitored. SBLCB focuses in on the incidence of smoking, signs of failure to grow, reduced fetal movement, inadequate monitoring in labour – risk factors that were all known about decades ago when I was in clinical practice. Given that 3000 babies are stillborn every year in England alone this seems like an important area to concentrate on.
ASDA has apologised for selling a pregnancy test that issued false results leading a young woman in Devon to believe she was pregnant when she wasn’t. However the store has not recalled this product and insist it has been quality tested.
One in five people who have eating disorders have their lives cut short, but a considerable number are turned away from help because they are not skinny enough. And this in spite of National Institute of Health and Care Excellence guidance to disregard body mass index. (I found this to be true when I was researching Inside of Me.) A campaign is now underway to ensure the NICE guidelines are being adhered to.
News at the end of July was that more than half of Scotland’s population have pledged to donate their organs and/or tissues after death. That’s the highest rate in the UK and comes after a high profile awareness campaign. It’s good news for the 550 or so waiting for transplants and a significant factor in the discussion about whether we should change to an opt-out system, currently under review. Interestingly 90% of the population support organ donation, so one wonders about the mismatch.
I could go on but I promised just a brief snapshot. But I’m doing my best to keep perspective during my annual summer sortie into the world of drama and art.
Moral obligation
Every now and then something crops up that challenges my thinking on ethical issues, and I’m reminded all over again that these questions are always evolving and it behoves me to stay on my toes and constantly revisit them.
This week it was a half day seminar on ‘Leaving your brain to science: Engaging with law and ethics’, organised by Edinburgh University. Now, although I’ve been immersed in the subject of organ donation for the last few years, as you know, I hadn’t explored giving the brain specifically, so I was intrigued to know what would emerge. I won’t bore you with the details, but I’d like to share something of the workshop that concluded the day.
It focused on moral obligation. We were given a collection of possible actions which might be of benefit to others and asked to rank them in order. At one end was ‘MORAL OBLIGATION’ which essentially meant the action is of recognised benefit to others with very little risk to oneself, making it something where there is a high level of obligation to carry it out (eg. on finding a fire one should summon the fire brigade). At the other end of the scale was ‘MORAL SUPEREROGATION’, meaning that the action might well be deemed praiseworthy, but it carries risks of such an order that there would be no obligation to do it (eg. rushing into a blazing building to rescue someone); it goes way beyond what might be considered a duty.
The actions to be ranked were:
Live organ donation
Cadaveric organ donation
Egg donation
Sperm donation
Giving samples of tissue for research
Bone marrow donation
Donating the brain for research
Blood donation
Why don’t you try it yourself? Weigh up the potential benefits and costs and see where you feel a sense of duty/moral obligation takes YOU. You might well be surprised – as I was – at where ‘giving your brain after death‘ comes.
Book Week Scotland
Well, that’s Book Week Scotland over for another year, and my own part in it was great fun.
The library was looking very colourful with rainbow posters and plenty of displays and the librarian somehow managed to offer everyone who came a hot drink as they arrived – a lovely touch on a cold dark November evening. I was talking about Over My Dead Body and organ donation, and the audience were brilliant – very engaged with the practical and moral issues as well as the literary ones. I threw out a few challenges during my introductory talk and the responses came thick and fast in the open session. It always gives me a real buzz having folk talking about the topics in my books. – in this case, about the difficulty of giving eyes … about the difference between donating one’s own organs compared with those of your child … about cellular memory (where people believe characteristics of the donor are passed on through the tissues) … about who should or should not get organs …
I learned afterwards that there were several nurses in the audience but they kept a very low profile. However, one man who’d had an organ transplant himself, bravely shared some of his thinking and experience in open debate. Fantastic. And one-to-one discussion continued over the book signings which always pleases me. It’s lovely to actually meet the people who read my books.Thanks everyone.
As I post this blog there’s a ferocious storm raging across Scotland so stay safe out there.
Timing
It’s five years now since my novel Right to Die was published. In the run up to publication day I fretted when news stories related to this issue appeared. Would they steal my thunder and make it look as if I was jumping on someone else’s bandwagon?
How absurd. Here we are in 2013 and the subject continues to grab the attention of reporters and the public. Only this week the case of Paul Lamb, a 57-year-old man who’s been paralysed for the past 23 years after a road accident, hit the headlines. He’s taken up the campaign (initiated by Tony Nicklinson and discussed here) to legalise assisted death. He too is unable to do the act himself but wants any doctor who helps him to be immune from prosecution.This issue isn’t going away any time soon and Right to Die is as relevant today as it was in 2008.
Whenever and wherever one contemplates slow deterioration and indignity, pain and suffering, the prospect is horrific. It doesn’t take much imagination to see why a swift end to it all might seem preferable. How to live through the process and achieve a good death is the question.
But speaking of death, I was hugely impressed by best selling novelist Iain Banks‘ recent wry announcement about his own impending demise. As he stated on his website: ‘I am officially Very Poorly.’ He is. He has inoperable gall bladder cancer with numerous secondaries and doesn’t expect to live beyond a few months. His current novel will be his last and his publishers are rushing it through to give him a sporting chance of seeing it hit the shelves. He adds with the sort of ghoulish humour which is helping him deal with this tough situation, ‘I’ve asked my partner Adele if she will do me the honour of becoming my widow.’ The style and language of a brave man and a truly accomplished writer.
My own mark will be infinitessimal compared with his but I still worry about the impact of my books and the timing of their publication: the subjects I deal with do have their moment in the headlights. I couldn’t believe it when last week the press picked up on the fact that organ donation rates had risen significantly. and splashed it everywhere in capital letters. And blow me, the topic even came up in fiction in BBC1’s medical drama Holby City, with the death of a young doctor during brain surgery. She’d requested her organs be used and there was a dispute in the family. Hey, that should all have come after Over My Dead Body was published, not while it’s in the starting blocks!
But supply is still falling way below demand when it comes to human organs so all is not lost yet. Indeed, I doubt it will ever be too late to publish a book about transplantation in my life time.
Red roses and beating hearts
Last summer I wrote a piece about teenager, Hannah Jones, and my brother, Rob – both of whom made difficult choices in relation to treatment for cancer. Hannah declined a transplant, Rob accepted.
This week I’ve been in touch with both. Rob I saw in the flesh at a family wedding. Hannah’s Mum, Kirsty, contacted me through my blog – what an unexpected and delightful surprise. And subsequently Hannah herself emailed, and we’ve started up a lovely conversation. I was impressed all over again, not only by their courage, but the generosity of spirit they show in sharing their stories. Happily both are still alive and a vital part of loving families. But Hannah is feeling rather poorly at the moment so loads of good wishes are winging their way to her.
It’s Valentine’s day today and all this week STV is supporting the nationwide From the Heart campaign, which aims to raise awareness of organ donation. As you know, my current novel, Over My Dead Body, is about this very issue, so my antennae are out there quivering like crazy.
The focus of the campaign is twofold: to encourage viewers to join the organ donor register, and to talk to their loved ones about their wishes. The blurb says that there are ‘currently around 10,000 people in the UK who need a transplant and a thousand of them die waiting every year. Yet only 31% of people have registered as donors – a much lower proportion than some other countries around the world.‘ And apparently, 45% of families say no to donation because they don’t know what their loved one would have wanted. That’s a quite shocking statistic in these days of easy communication, isn’t it?
I like the timing. In Valentine’s week, whatever the state of their own love life, everybody has the opportunity to give a gift that could potentially save or transform the lives of others. And talk to their nearest and dearest.
Dramatis Personae
I spend time each month with people whose memories are not what they once were. And – dare I admit it? – I’m increasingly conscious that mine is more selective than it used to be. So my ears pricked when this week Baroness Joan Bakewell made a comment about her difficulty remembering characters in a book. Writing in The Telegraph she observed that it’s easier to turn back and check the plot and who’s who in a ‘real’ book than with a Kindle. I agree in part, although of course, in reality it’s perfectly easy to bookmark a page and search for keywords with the electronic version.
I’d also add that there are occasions when I can’t remember why I’m reading a particular book in the first place – a flick to the back cover of a paperback will tell me; it requires more effort on the Kindle.
Joan Bakewell’s comments generated a small flurry of responses, and one from Bedfordshire suggested that all books should list the characters with a brief note on each. I did once include a family tree in one of my own novels (Remember Remember – which incidentally is about dementia), although my editor didn’t think it was necessary. I’m devoutly wishing the novel I’m reading right now had just such a dramatis personae. I’m having to concentrate hard to make the connections in what is a subtle plot with lots of characters (too many beginning with ‘A’: Anselm, Augustine, Agnes, Arthur, Andrew, Aubret, Anton, Armstrong, Adolf), false trails, and a lot of zipping to and fro between the generations. And what’s more several people not who they say, or even think they are. I mean, is it any wonder I’m confused?
It’s The Sixth Lamentation by William Brodrick which I bought on a strong recommendation from a friend who’s read it several times. Actually if I’m honest I don’t think my difficulty is as much to do with Brodick, as to do with my juggling too many balls at the moment, which means my attention is only partially on the story that I’m reading in odd snatched moments.
Domestic crises and extra responsibilities have been vying with professional demands lately. But this week I’ve made a concerted effort to methodically tick off deadlines. So what have I accomplished? I’ve sent off the usual synopsis and first three chapters for Over My Dead Body to a potential agent; Double Trouble has gone to a film production company who’ve expressed interest in making it into a feature film; I’ve had encouraging conversations with a possible funding body to enable this to happen; and all my various blogs are up to date. Phew. A week in the life of a lowly jobbing writer.
I’m realistic – nothing may come of any of these developments, but at least my report card will read ‘Hazel demonstrates dogged persistence and works hard‘.
Maybe in two weeks’ time when my current overload is a thing of the past (now there’s a triumph of hope over experience, if ever I heard one), I can return to The Sixth Lamentation with renewed enthusiasm and perhaps this time do it justice. See, that’s where that dramatis personae would be a real boon. I’d have a head start.