It’s all very well to theorise about how we would act in certain circumstances from a safe distance, but real life in all its chaos can feel very different from the calm scenarios of our speculations. And in that context I’ve experienced some very sobering realisations this past few weeks in relation to medical ethics. Don’t get me wrong, I’m not feeling maudlin or morbid; rather I have an unusual amount of quiet time on my hands to reflect at the moment. So I thought I’d share some of my reflections with you to illustrate my initial statement.
There’s a lot to be said for simply accepting whatever life throws at you and dealing with it as it happens. It also saves a lot of angst if you just go along with whatever doctors say, take whatever treatment they advise, leave all the thinking to other people. But I’ve spent decades pondering ethical questions and challenging received wisdom, and my brain is now hard-wired to do so. So, let me illustrate where I’ve been going with this.
My own mortality has been brought into sharp relief since my heart started doing crazy things and I’ve been in and out of hospitals and GP surgeries. Lying on the floor waiting for the next heartbeat, watching a monitor recording 200 beats a minute, feeling the world receding, concentrates the mind wonderfully.
I’ve been working in the field of medical ethics for decades so not surprisingly I’ve given due attention to my end-of-life wishes. My ideal? To die with dignity, free from suffering, in full possession of my mental faculties. Nothing unique there, then. If things go pear-shaped, I’d rather not prolong a life of disability, lack of cognitive function, or suffering. Fair enough. Given that I’m entirely reliant on medicine to stay alive, I even have the wherewithal at my disposal to effect my own death should I wish to, without breaking any laws or implicating anyone else, or indeed doing anything other than refusing treatment.
I’ve duly prepared myself and others: I’ve thought (ad nauseam) about my own tolerances and limits. I’ve written an advanced directive – and even acquired a medical signature for it. I’ve had the conversation (many) with my nearest and dearest. All textbook stuff so far.
But real life is full of fine lines and unknowns which make actually carrying out those clear wishes problematic. I won’t bore you with a comprehensive treatise on how far short of the textbook reality falls in my own case; merely give a couple of examples by way of illustration.
I have options. I could simply ignore all my current symptoms of dizziness, nausea, blackouts, arrhythmia, get into the car and drive. I could keep doing strenuous things until my heart just gives up. Either, in my judgement, would be totally irresponsible. And my family and friends and doctors and lawyers would certainly have plenty to say – legitimately – about such a reaction. No, I have little choice at this moment but to listen to my body and accept that all is not well, and I believe I have a moral duty to take certain actions in recognition of that.
My heart is not maintaining a steady rhythm. One of the consequences of this is that I’m currently at greatly increased risk of a stroke. But nobody knows how bad such a stroke might/will be. If I suddenly had one, would I want to be resuscitated or treated? Well, it would depend on how severe the consequences of the stroke would be, and nobody could predict that at the time of the stroke. By the time anyone does know, the decision to treat has already been made … hmmmm. And it could be that by then I’m no longer mentally competent to make a decision for myself … ahhhh. How quickly and easily events spiral out of control.
At the moment we don’t know what’s causing the problems; I’m scheduled for more tests. Once we have a better idea of the underlying diagnosis, other questions will surface. They’re contingent on the facts: cause, statistics, outcomes, possible treatments, side-effects, risks-benefits ratios, etc etc. My medical team can supply the information, but I’m the one who must assess what I want. No one can force me to have treatment against my wishes. But my tolerances, my wishes, might not square with those of my medical advisers who have their own professional and personal standards and ethics, although it has to be noted, the consequences of what they do to me will not be borne by them. My assessments might not match those of my family who could be left to cope with my disability or death or worse. For their sakes I might feel an obligation to choose something different from what I might wish for myself alone.
See what I mean? We might think we have it all buttoned up, but life is unpredictable and no man is an island.
I’ve seen up close and personal the effect of heart problems like mine – both instant death from a heart attack (my father), and the slow decline of repeated strokes, vascular dementia, prolonged total dependency (my mother) – so I’m not naive. I know what I would choose for myself; my family do too, but it’s not at all clear to me at the moment that I shall actually be able to put my wishes into effect. I rehearsed these dilemmas with Adam O’Neill when I walked alongside him as he died from Motor Neurone Disease six or seven years ago. I’m rehearsing them again now in real life for myself. It’s an interesting occupation.
Sometimes fiction allows one to tell a truth that couldn’t be so readily conveyed factually because of all the complexities of real life: so said best-selling crime writer, Val McDermid, at a Blackwell’s Bookshop event on Thursday evening last week. How true.
She was appearing with her great friend Professor Sue Black, a renowned forensic anthropologist. I’ve heard them doing a double act before at the Edinburgh International Book Festival so I knew we were in for a real treat.
The flip side of the first aphorism is: fact can sometimes be so much stranger than fiction that a novelist can’t use it because no one would believe it. How far would your credulity stretch, I wonder? Would you believe that a pile of pupae on a kitchen table in Liverpool could be found to have cocaine in its DNA, which in turn would lead to the discovery of the murder of a drug dealer no one knew had been killed? It really happened! Were you aware that only certain species of insects can lay eggs through the zip of a suitcase? Val has met the scientists who’ve investigated this phenomenon in person and seen the actual suitcases they utilised. Did you know that the ink used in tattoos migrates to the lymph nodes, so that if a corpse has had the limbs severed, the lymph nodes in each quadrant can indicate where and what colour their tattoos were? Or if indeed they were added after death. Fascinating true facts.
The evening was full of such wisdom and knowledge. All delivered with great verve and wit. Both women are excellent orators with a lively sense of humour, and a tremendous breadth and depth of knowledge. They also have massive respect for each other and for their readers’ discernment, illustrating perfectly the enormous value for a writer in working alongside experts. Their own relationship goes back twenty years and one can readily understand that in their time they’ve emptied more than one hotel foyer and coffee shop with their ghoulish conversation and macabre sense of the ridiculous! Even at this event, in full view of a large audience, they chortled gleefully about subjects not normally broadcast before the watershed! But hey, did you know that a pubic scalp looks like a tuna steak with hair? (Val said it took her a good year before she could face a tuna steak after Sue shared this fact with her.) Or that PhDs are gained on the study of the backs of men’s hands and the configurations of the male genitalia in various stages of arousal? Such essential statistics are vital for forensic scientists tracking down paedophiles and murderers apparently; and equally valuable to a crime writer weaving an authentic and challenging plot.
Perhaps the clearest message that came across though, was that the best scientists are the ones who can make their subject readily understandable to other people. Sue Black does exactly that. And if anyone could sell a book on forensics, it’s these two. When Val was recently approached by the Wellcome Trust to write a non-fiction book on the history of crime for their forthcoming exhibition, she initially declined. All she did was ‘make it all up’, she protested. But of course, in truth she’s a mine of information, and has an impressive contact list of experts to boot. With the inquiring mind of a journalist, and the lateral and devious thinking of a crime writer, she tracked the changes in techniques and detection over the years and produced Forensics: The Anatomy of Crime, which was published last month. In her lively description she allowed us to share her fascination with the topic that grabbed her interest most: scavenging bugs and beetles, flies and maggots, and what they can teach about a crime.
All in all a most entertaining evening that reinforced for me the importance of meticulous research and true engagement with one’s readers/listeners.
(Footnote for those who are anxious about my current health problems: I was closely guarded by my son and daughter from door to door. I’m happy to report that in spite of the excitement and laughter my heart rose nobly to the occasion and I lived to write this report.)
I’ve just returned from Dublin’s fair city, ‘where the girls are so pretty’ – home of everything from the tragic heroine Molly Malone herself, to the famous Book Of Kells and the amazing library of Trinity College – greatly encouraged. Because writing and storytelling are very much at the heart of things.
Whether you follow a City Tour, or visit the Writers Museum in Parnell Square, or chat to the Irish in their natural habitats, you’ll hear tales of homegrown literary giants; tales moreover told in wonderfully lyrical Irish accents which are poetry in themselves. Some of the detail may be embellished (as one guide said, ‘Why let the truth get in the way of a good story?’), but the essence is the same: Dubliners are proud of their literary heritage. Even ordinary people tell of at least trying to get to grips with Ulysses – the story of the experiences which beset a Dubliner, Lionel Bloom, on 16 June 1904 when his voluptuous wife Molly commits adultery – which is more than can be said of most Joe Bloggs elsewhere, isn’t it?
I suspect the majority of us could get no further than the occasional famous quote from this particular classic: ‘history … is a nightmare from which I am trying to awake’, maybe, or ‘God is a shout in the street’, or ‘Shakespeare is the happy hunting ground of all minds that have lost their balance’, or possibly, ‘To learn one must be humble. But life is the great teacher.’ And indeed, even if we’re familiar with the sayings, how many of us knew they’re from the hand of James Joyce?
If ever I decide to seriously tackle this epic with all its density and complexity and impenetrable prose, I think I stand the best chance of persevering if I’m in Dublin itself, surrounded by people who admire and revere its author. People who don’t closet their acclaimed writers away in an esoteric museum. No. Rather they erect statues of them; they call buildings, bridges, roads after them; they speak of them on the buses, in the pubs and cafés. A nation that is proud of her men of letters. Brilliant.
I’m shocked, frankly.
Babies are precious and special, aren’t they? And couples who can have them naturally are well blessed. Yes? Ask any infertile couple going through expensive and emotionally draining treatment. So what do you think of the latest recruitment incentive?
Apple and Facebook are offering a perk for female employees: the company will pay to freeze their eggs (and you’re talking about c£13,000 a pop here). Why? To help them ‘avoid having to choose between motherhood and professional progression.’ To ‘empower them’. Hello?
Apparently there’s a dearth of top women in Silicon Valley and this offer is designed to encourage them to defer motherhood until they are well up the promotional ladder. The frozen eggs bit is part of a package already in existence in Facebook in the States and due to roll out with Apple in the new year (although there are currently no plans to bring it to the UK). Facebook is also offering adoption and surrogacy assistance and other fertility services for both male and female employees. The mind boggles. Serious serious issues all; the kind of topics I grapple with on a regular basis.
When I think of the heartbreak and tragedy of couples who turn to fertility treatment or surrogacy or adoption as a desperate last measure for medical or other devastating situations, I want to weep at this news. To offer these things as a job-inducement seems to me bordering on sacriligious. I bet the small print doesn’t tell them there are no guarantees for women who voluntarily mess about with their biological clocks.
That’s my personal rant, but what do YOU think? Would you allow your employer to pressure you into something this private and personal? How does this square with your values and personal lifestyle and choices? I’m quite sure there are plenty of people out there who disagree with me or the offer would not be on the table.
In March of this year, Tania Clarence was 42. She lived in a smart five-bedroom house in an affluent area in south-west London. Her husband was an investment banker. She employed a nanny. The trappings of wealth and privilege, you might think.
But on 22nd April, while her husband was abroad, Mrs Clarence ended the lives of three of her children: 3-year-old twin sons, Ben and Max, and daughter Olivia, aged 4, all of whom suffered from type 2 spinal muscular atrophy, a degenerative wasting disease. She suffocated them and then tried to kill herself with an overdose. She was adamant that she didn’t want to be saved; she couldn’t live with the horror of what she’d done. How often must she have regretted that her suicide attempt failed.
Six months later, this week in fact, her defending QC said, ‘caring for three children with this condition was exhausting, distressing, debilitating and turned out to be overwhelming.’ Indeed. She pleaded guilty to manslaughter on the grounds of diminished responsibility. Medical reports described how she was suffering from major depressive illness. The courts have decreed she will not be charged with murder, but she will in all probability be treated in a psychiatric hospital.
Unless we’re drowning in her problems, it’s impossible for any of us to really empathise with the depths which drove her to this point, but I’m sure we can all understand her despair and depression. There was never going to be an escape from this intolerable burden, not just the relentless workload, but watching all three beloved children getting steadily more disabled.
I feel huge sympathy for her. And I say this with some feeling, because when my own firstborn collapsed aged 3 weeks and his doctors predicted a lifetime of disability, pain and suffering for him, I distinctly remember feeling that death would be preferable for him: better that I should be the one bearing the pain of losing him, than that he should suffer. So I for one am devoutly glad that the courts have decided Tania Clarence should not have to face murder charges. She is already serving a life sentence, poor woman.
Amongst the files on my desk for future novels is this one, labelled ‘Mothers Convicted of Child Death or Damage’. I’m not sure I will ever have the courage to write it, but Mrs Clarence’s story goes into it for now.
PS. For those who don’t know, my firstborn defied medical prognoses, and is a totally healthy young man today; he has always been hugely loved. So please don’t waste any sympathy on me. Or castigate me for my callous approach to motherhood! Not for a second did I ever contemplate actually killing him, but then I was never driven beyond endurance.
It’s Saturday. It’s raining. Where am I? Yep, at the Portobello Book Festival. Why? Cos I’ve been invited to take part in an event about dementia. (Hardened visitors to this blog will know about my novel on the subject: Remember Remember.)
Today I’m sharing the spotlight with a poet, a doctoral student, and a campaigner. Could be interesting. In the chair is Alison Summers who, as part of a PhD in Creative Writing, has recently written a novel about a young person with dementia (she’s currently on the hunt for an agent). She has the job of firing the questions and keeping us all to time – not easy as it transpires!
On the panel? Tommy Whitelaw who went from being part of a global merchandising operation for the Spice Girls, Kylie and U2 (yep, really!), to being a full-time carer for his mother when she developed vascular dementia. He’s currently touring the country campaigning for better care and understanding of the condition. He’s here to talk about his personal experience, not his brush with fame. Next to him is John Killick, who’s spent decades helping people with dementia express their creativity, the results of which are captured in his recent book, Positive Dementia. He’s one of life’s natural listeners and he’s still kept busy promoting improved ways of caring in all sorts of places. And then there’s me.
Ahah. The introductions establish a common thread: all three panel members have been working actively in the dementia world, using the spoken word, as well as the written – fact as well as fiction – to help raise awareness of the condition and the issues around it.
Perhaps it’s not surprising then that, though we all come from different backgrounds and different disciplines, and we weren’t in cohoots beforehand, a concerted message comes across: the importance of properly listening to people with dementia and their carers; listening to what they say and what they can only express through their body language or music or even silence. Care based on that kind of compassionate listening will be truly person-centred, respectful and sensitive. The kind of care we would all want for our loved ones.
This cross just inside the Old Parish Church (the venue for the session) seems entirely apposite. Sensitive, responsive care is a form of love for our fellow man.
Good to see friends from Blackwell’s Bookshop there too with piles of my novels. It still gives me a thrill to see those 3-for-2 stickers on them.
As I walk away from Portobello I’m reminded of Sigmund Freud: One must not be mean with the affections; what is spent of the fund is renewed in the spending itself.
PS. Remember this?
In spite of the rain and the professional engagements and the time spent with lovely ladies with dementia and all the sundries of everyday life, after four coats of paint, those endless endless railings and gates are now finally FINISHED! Hurrah!! And the tedium of the job gave me oodles of time to plot my talk – this time about Over my Dead Body. Another tick on the to-do list.
Wahey! At long last, after many a hiccup and delay (no, don’t ask) the electronic version of Over My Dead Body is finally available! And it’s only £2.48.
When I first met my future husband’s grandmother she referred to me as ‘the door handle’. I had no idea how to respond apart from with a shaky smile. By the time my mother developed vascular dementia decades later I was considerably wiser and more confident. Given the exponential rise in incidence rates, all of us must surely come into contact with dementia in one form or another at some point in our lives – a high proportion up close and personal. Having a degree of insight into the condition can transform a tricky situation into a meaningful experience.
As part of preparation for the Portobello Book Festival I’m appearing at in two days time, I’ve just re-read a book that was pivotal in my own understanding of dementia many years ago. It’s called And Still the Music Plays by Dr Graham Stokes, a very experienced clinical psychologist. And I’d highly recommend it.
Each vivid and sensitively written chapter is devoted to the story of one patient/resident who is exhibiting challenging behaviours, and alongside the narrative the author unravels a rationale for why they’re doing what they’re doing. All too often relatives say dismissively or desperately, ‘This isn’t our mum/dad/aunt/husband/wife. It’s the dementia’, but Stokes’ contention is that many difficult behaviours are not simply attributable to the underlying pathology of the disease, but need to be seen in the bigger context of the person’s life and experiences. Often a simple change of tactic can avert an outburst or distress.
‘Functional analysis is the pursuit of finding out ‘why’ people behave in the way they do. People, whether they have dementia or not, rarely do things without reason. Sometimes we have to ask ourselves, “Why did I say that, why did I act that way?”, and while we may not always like what we find out about ourselves, there will have been a reason. Similarly a person with dementia has reasons for what they do …’
Some solutions were relatively simple. Drawing the curtains at night so that Colin stopped being fearful of the strangers (reflections) lurking outside, and playing his favourite mood music, calmed him noticeably. Changing the colour of a bedroom eliminated Mrs D superstitious fear of the colour purple associated in her Catholic mind with death, grief and mourning. Removing a china cat stopped phobic Lucy’s persistent screaming.
Stop for a moment and consider the setting of a care home, the things that are done there. How would you feel on the receiving end? Then it’s easier to understand why private, reserved, dignified people were disturbed when taken from the relative peace and familiarity of their homes and placed (trapped) in locked wards with complete strangers (residents) all behaving oddly or menacingly, and other strangers (carers) invading their personal space and insisting on doing intimate things to them in secluded places. How are these external factors perceived by a mind altered by inexorable disease? Mrs O went from being ‘the most violent woman I have ever encountered’ to a much calmer gentler soul when Dr Stokes uncovered her past sexual childhood abuse, and realised that she needed the anonymity and unambiguous messages of a disinfected treatment room for all intimate procedures.
I’m sure we can all recognise many of the triggers Stokes identifies: long standing inhibitions about using public toilets; dehumanising or degrading management; an obligation to sit at a table with strangers exhibiting objectionable manners and habits; ‘enforced’ or ‘expected’ socialising; relentless noise, interruptions and activity.
‘Functional displacement provides the person with an equivalent but more acceptable means of meeting their needs in a way that is neither as invasive nor as exasperating for carers to endure.’
What a difference it would make if more of us were sensitive to these triggers and had the patience and persistence to find ways to circumvent them.
As it says on the book cover: ‘Storytelling is the oldest and perhaps best way of learning known to humans.’ The author’s detective work with 22 unique human beings whose lives have been turned upside down by dementia makes compelling reading, and what’s more these accounts help us all to see how important it is to reach out to each individual with compassion and understanding. There but for the grace of God …