Hazel McHaffie

medical ethics

Future possibilities

There will never be a shortage of subjects for me to write about! I lose tracks of scientific breakthroughs and medical marvels. And today, given the breadth and range of material available, I’m not going to even attempt to link everything I mention to scientific papers – Google the key words and you’ll get the information if you’re interested.

When HIV/AIDS first came to our attention in the 80s there were doomsday predictions of biblical plague proportions and real-life devastating statistics. I was a researcher at the time and saw it, wrote about it, first hand. Then came huge public awareness campaigns … followed by the development of anti-retroviral wonder drugs … then combination therapies, that could hold the disease at bay. Now here we are, with stories of stem cell donations from people with ‘natural immunity’ rendering patients free from the virus. You could weave a pretty complex plot with that one! And in 2019 my file marked HIV/AIDS looks completely different from the slim wallet of 30 years ago.

Inside of Me coverThen there’s the transgender issue. Wow! So many dimensions. About young children wanting to transition. About people wanting to reverse the process; the irreversibility of some therapies. About misleading statistics. Eebie jeebie – how crazily tortuous a plot could you construct in that area. The imagination goes into overdrive. Makes my little sally into that world in Inside of Me, pale into banality.

It’s 41 years since the first test-tube baby, Louise Brown, was created, and infertility was very much top of my pile when it came to choosing subjects for my set of novels. Now despite widespread opposition, criticism, vilification, stigma, as many as 8 million babies have been born by IVF. And the endless thirst for knowledge and understanding, coupled with a bottomless pit of compassion, drives researchers and clinicians in this area to seek more and more solutions to the problems couples have in conceiving, or avoiding perpetuating deadly genetic diseases. There’s mileage for several more books to follow on from Paternity, Double Trouble and Saving Sebastian. Did you know, for example, that the success rate for assisted fertility is way way higher (50%) than for natural conception (25%) … plenty of scope to work up a story-line there, huh? Imagine a gang of 35-year-old career girls going to the freezer to select artificially-created sperm … or genetically screened/modified embryos … ticking selection boxes along the way for green eyes, athletic ability, fiery temperament …? Endless possibilities!

The statistics on abortion reflect changes in society’s mores and values; programmes like Call the Midwife have increased public awareness of how things have developed in a generation. Add in dating apps, modern career paths, cohabitation, social expectation, fertility statistics … I feel an historical reflective story coming on! I well remember, in the 70s/80s soon after the 1967 Abortion Act was introduced, women coming in for a second, perhaps even third, abortion were looked upon askance. Recent Government figures have highlighted that of almost 68000 abortions carried out in 2017, 1049 were undergoing their fifth abortion and 72 their ninth! And there’s a story behind every one.

Then there’s the horrific topic of female genital mutation … don’t get me started! The recent story of the first person to be convicted in Britain briefly reported in the national press was shocking enough – the little girl was three years old; the mother cut the child herself in her London home; indecent images and animal pornography were involved. I absolutely couldn’t go there with fiction. But … should our collective conscience be prodded?

Resources, caps on the cost of medical and social care … I’m somewhat allergic to numbers, but reading about the human consequences of budgetary restrictions brings out the indignant in me. And might just compel me to write about it if I’m around long enough to get to that file.

Even the topic of assisted dying – a recurring hot potato – has subtly changed since I published my novel on the subject, Right to Die, eleven years ago. The issue’s been described by lawyers for the Royal College of Physicians as ‘one of the most controversial and morally contentious issues in medicine’, but ongoing polls of both medical and public opinion show a definite move towards accepting the need for some change. This might be simply taking a neutral professional stand as against opposing it; or a swing towards legalising some form of assisted suicide in the UK. A novel today could look very different.

Yep, I’m endlessly adding to the possibilities in my files as medicine and science reveal more and more, and society’s tolerances and expectations change. This is just a superficial skim. Anyone out there keen to pick up the gauntlet?

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A lifelong apprenticeship

Wow! I’ve had quite a jolt.

Picture if you will …

… the Canary Islands: brilliant sunshine, millions of years of volcanic activity, vibrant flora, a whistling language, an excellent health service but serious economic struggles …

Fascinating and a real get-away-from-it-all break. But, in the back of my mind, lurks the thought that I have an author appearance shortly after I get back to the UK. Hmm. Best tactic? Jot down a few ideas in idle moments, on the train/plane/ferry, let the topic (‘Well-being’) simmer on the old back burner, but concentrate on the Canarian experience.

Overall strategy? Take the audience up to the bedside of some of my characters, let them listen to the conversations, enter into the minds, of people who are facing challenging, even tragic, choices. Give them a chance to consider the different options themselves. Maybe ruffle their sense of well-being a tiny tad …?

Saving SebastianHow would you feel having a four-year-old dying in front of you, I wonder? Would you agree to create another baby specifically to try to save his life, knowing that many perfectly healthy embryos will probably be destroyed in the process, that this new child might have the same fatal blood disorder too, that it might all be in vain?

How would you react to being told you have a terrible degenerative disease which will certainly destroy your body inch by inch, killing you before you reach your 42nd birthday, your brain fully aware of every ghastly step?

You get the idea.

It’s a long time since I wrote – or indeed read – my earliest books, so I quickly realise I need a crash course on McHaffie’s medical ethical novels. Happily I have several on my Kindle, so I immediately start to update myself. And that’s when I make a sobering discovery. I want to edit them! Hey, why did I write this that way?! But of course, I can’t change it; not now they’re published. Any more than I could change the experience I had of Tenerife, or La Palma, or La Gomera, once the ferry drew away from each in turn.

Why should that surprise me?  It shouldn’t. I’ve moved on, honed certain skills, developed my craft, progressed – hopefully! As Ian Rankin once said; the reason we keep writing is, we’re always trying to improve, to write the perfect story. It’s a lifetime’s apprenticeship.

And each time I embark on a new book, the older ones recede in my mind, much as the islands become hazy and less defined as the ferry powers off across the Atlantic.

New horizons beckon. I’m already scanning the ocean for new excitement, noticing the changes in colour and swell, watching the other passengers, wondering about their lives … scavenging new ideas, creating new connections, forging a new pathway in this fathomless deep that is our world/imagination.

So, it’s been a salutary experience, re-visiting my own earlier novels. I’ve had to forgive myself for the failures and infelicities of the past, cling on to the better aspects, and extract useful messages that might provoke discussion and pique interest when I’m in that other life, in that Scottish library, talking to an audience about ‘Well-being’ and the writing life.

OK, next step? Inject some humour! Don’t want them leaving in tears, never wanting to go to a library again, do we?! And there’s planty to amuse in my books … a fabulous train conductor on the Aberdeen-Penzance Cross-Country run; a minister with holey/holy socks and an all-embracing love; a lab technician who quotes Oscar Wilde to excellent effect … I’m sure they’ll come to my aid. But first, let’s savour every experience these amazing islands have to offer. No need for regret on that score.

 

 

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‘A time to rejoice …’

Hey … time methinks for a completely undemanding, totally positive, uncomplicated post. I’ve given you some pretty heavy duty stuff lately, I know.

But … give your brain a rest, and let’s just celebrate this week. My latest book is now PUBLISHED!!

Here’s what it looks like:

Here’s what it’s about:
Professor Jocelyn Grammaticus is travelling on the 8.20 CrossCountry train from Aberdeen to Penzance. (If you’ve never tried it, think twice before you do! – it takes almost thirteen and a half hours.) But for Jocelyn it’s more than a long sit – she’s facing the hardest ethical dilemma of her life when she arrives in Cornwall. To distract herself, she sets about writing a keynote speech due for a conference the following week, and all unwittingly the assorted passengers who flit in and out of Coach C give her food for thought. But four hours before she arrives a phonecall stops her in her tracks. Will she be in time? Will she have the moral courage to fulfil her promise?

Loads of people have asked me about the underlying theme, so if that aspect intrigues you too, it’s about informed consent. But don’t let that put you off if you’re just looking for a diverting read. Listen out for the manager who joins the train from Newcastle to York; I’d love him to accompany me! Listen to the chatter … listen to your own heart and conscience …

Oh and I should warn those of you who are familiar with my work, this book is different from my previous ones:
– it’s much shorter – classifies as a novella really.
– it’s only available in electronic form.
– we’re offering it as a FREE download. Just click here to start the process.

Do let me know what you think. I’d love to hear from you – no flannel, only honest feedback, please.

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Real life ethical challenges – alive and well

Wow! The year has begun with a bang as far as medical ethics is concerned. Lots to challenge us.

Just in one day this week we had the news that …

Every secondary school in England is to be offered training to help them identify and support children who are suffering from mental illness – a government-led initiative. Mrs May describes it as a first step in a plan to transform the way we deal with mental health in this country. There’s a long way to go but this is at least a concrete measure. Is it the right one, d’you think?

A terminally ill man with Motor Neurone Disease who fears becoming entombed in his own body has asked judges to allow doctors to prescribe a lethal dose of drugs for him without fear of prosecution. Sound familiar? Well, actually it’s the first case of its kind for 3 years would you believe – surprised me to learn that too. Should he be allowed this option? Is the UK ready for change? Where would it lead?

There’s been a rise in demand for live-in au pairs for elderly folk. It’s an attractive alternative for some to going into residential care. OK, I’m listening! And it comes amidst the controversies over standards in care homes and the soaring costs involved. But of course it comes at a price. And it inevitably excludes some people. Will it take off? Should it?

Viscount and Lady Weymouth have become the first members of the British aristocracy to have a baby carried and delivered by a surrogate mother. Apparently Emma Weymouth has a rare condition which puts her at high risk of having a stroke during labour; she suffered a brain haemorrhage and an endocrine disorder during her first pregnancy. This was deemed the safest way for them to ‘complete’ their family. But of course it has higher significance to an ancient lineage like the Longleat Bath family than to the average couple. Any thoughts?

After lengthy wrangling, judges have decided that a Gulf War veteran, policeman, and father of one, aged just 43, should be taken off life support and allowed to die, in line with his expressed wishes. His wife sees it as a final act of love. Others decry it as the thin end of the wedge to denying the sacredness of life. Where do you stand?

As I’ve said before, I shall never run out of material for my writing. And this ongoing interest in my subject spurs me on.

NEWSFLASH: Yesterday I completed the first draft of novel number 10. Wahey! Drum roll, please. It’s about a professor of Medical Ethics going on a train journey from Aberdeen to Penzance to deal with a crisis in her own family, but encountering all sorts of challenges along the way. The most fun of all my books to write so far, but I still cried at one point!

 

 

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Spinning out of control …

Eebie jeebie! Life’s on a steep slope and gathering frightening momentum this week. Where are the brakes …? Anyone seen the safety nets?

Path to Straiton Pond

Outside, hard frosts have made works of incredible beauty out of ordinary spiders’ webs around here, and I couldn’t help but feel an affinity with them. Unbelievably strong, amazingly intricate, yet so fragile if touched carelessly. A bit like the ideas the brain conjures up in creative mode. So, why is the writing life more than usually frenetic at the moment?

Well, to begin with it’s Book Week Scotland; I’m doing a couple of author events locally for that. Lovely to go out there and meet real live people who read my books, and want to know about why and how I do what I do, and wonderful librarians who are so enthusiastic and dedicated to their task of encouraging reading, but space needs to be found to prepare mentally for each one.

Web wrapped around finialI’m also writing not one, not two, but three books simultaneously right now. Three, do I hear you shriek? Yep, three. Completely unprecedented, as regular followers will know. Madness, probably. So why break my own rules?

Well, Christmas is fast approaching, so I absolutely MUST complete the grandchildren’s annual story/play due to be enacted on 28 December to a full house. I need to order props and make costumes before then, and allow for postal hiatuses, so first I have to finalise the text to be sure about what I still need/want. In spare moments, and by way of light relief, I’m also making monster heads – details are top secret (suffice to say that hair and glitter and strange white particles linger stubbornly in the warp and weft of certain carpets). And one whole room is definitely off limits to all, no exceptions.

Frosted cobwebThen my ongoing novel, Killing me Gently, mustn’t be allowed to lose momentum. Pleased to say I’m still with the thriller genre on that one. However, as a safety valve, I’m letting the back burner dictate the pace of this book at the moment, only sitting down to actually commit words to the document when they’re too insistent to ignore, or jotting down thoughts that wake me in the night.

Web tailored to fence postAnd the third book? It’s brand spanking new, jostling for attention at crazy o’clock, keeping me at the desk long past the witching hour. It’s got a working title of Listen and is designed as a shorter story in my usual vein (contemporary fiction set in the world of medical ethics) which can be offered as a free download to give potential new readers a window into my books. I’m having a ball writing this! It’s about a Professor of Medical Ethics who goes on a train journey from Aberdeen to Penzance where a crisis awaits her … I now know some amazing statistics about high speed trains! And about atrocious experiments performed on black people in the 50s in America. Intrigued? Watch this space.

I keep reminding myself … this is all entirely self inflicted!

 

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Ethical issues for everyone

I’ve been taking stock of where I am in my writing career of late and I thought I’d share with you a couple of noteworthy things from this appraisal.

The first relates to the prevalence of my subject matter.

To one side of my desk I have three large boxes full of folders. Each file contains material related to topics I’m interested in; each one a potential novel. (Yep, you’ve got the picture. I’m obsessive. Nothing newsworthy there.) But some of these files are very thick; one topic even runs to two volumes. And reviewing the contents, I’m reminded of how often I cut things out of the daily papers to slip into the said folders. Deduction? My kind of subjects must help sell newspapers; ordinary people must be interested in them.

Alert to this, I did a mini survey. Result? Just on one day this week there was something on
– mental illness (OCD and depression and self harming all dealt with)
– organ transplantation (growing human organs inside other mammals)
– assisted suicide (the BMA’s position: should doctors to be free to follow their consciences?)
– body image and identity (eating disorders, celebrities’ experiences)
– balance of risks and benefits (related to heart disease)
– care of the elderly and those with dementia
All on just one day in one newspaper.

Right to DieThe second point relates to the currency of my subject matter.

When I start planning a new book, I do try to imagine life a bit ahead of present understanding so that when it comes out it’s still relevant and topical, but I’ve been surprised at how much these issues remain current. Take assisted dying, for instance. My novel, Right to Die, was published in 2008. In the eight years since then parliament has revisited the issue repeatedly; professional bodies have regularly debated the pros and cons; a considerable number of high profile cases have come to public attention; campaigns have been fought. It’s still a hot potato and it doesn’t show any sign of cooling any time soon.

Remember-RememberThen there’s dementia. Remember Remember came out in 2010, but the ethical dilemmas it explores are as thorny today as they were then. What’s more, the number of families grappling with them is growing as the human lifespan increases; more and more individuals are exercised by the questions.

I’ve been working on an outline for the tenth and eleventh books recently and I’m staggered by the thickness of the folders on those two topics. I’m having to write notes of notes, and lists of lists, to sort out the wealth of facts and the evolution of thinking and knowledge, in order to establish what arguments and counter-arguments obtain today, and to start developing a coherent plot-line. When I first set out on my pathway to becoming a novelist, a very highly regarded agent advised me to leave my academic background behind me. I knew what he meant: the meticulous research mustn’t show through in the finished product. However, from my point of view, those decades as an university researcher stand me in good stead when it comes to delving deep, sifting and sorting facts, and understanding science.

Of course, I’m well aware that at some point I shall have to put away my writing pen, my days as an author done. But it certainly won’t be because I’ve run out of subject matter! Medical ethics is very much alive and thriving.

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Playing God

Playing GodAs a writer in the field of medical ethics myself, it behoves me to know how others portray these issues in fiction, whether they be script writers or novelists, so I’ve been keeping a tally for many years now.

The authors and editor of Playing God: Talking about Ethics in Medicine and Technology have clearly travelled a similar path, and it was this little book recently that took me back to my lists and collection of DVDs.

The sheer number of films surprised me, so by way of a change I thought I’d give you a summary of those I’ve noted which contribute an angle on the topics that fascinate me – alphabetically rather than supposed order of importance. Where possible I’ll link to the official trailers to give you a glimpse of what they’re like.

 

 

abortion:

Vera Drake

The Cider House Rules

assisted conception:

Seeds of Deception

Maybe Baby (link to trailer not permitted in the UK)

cloning:

The Island

Godsend

decisions about treatment:

Dying Young

The Theory of Everything

dementia:

The Notebook

Iris

Away from Her

The Savages

Still Alice

disease control:

Formula for Death

drug use/misuse:

Limitless

Color me Perfect

euthanasia/assisted death:

The Sea Inside

Million Dollar Baby

Amour

human experimentation:

Extraordinary Measures

The Manchurian Candidate

A Clockwork Orange

The Stepford Wives

medical paternalism/informed consent:

First Do No Harm

mental illness:

A Beautiful Mind

A Dangerous Method

All She Ever Wanted

Rain Man

The Curious Incident of the Dog in the Nighttime

Silver Linings Plaything

organ transplantation:

Coma

Dirty Pretty Things

 patient rights and medical malpractice:

Talk to Her

research malpractice:

Mortal Fear

saviour siblings/designer babies:

My Sister’s Keeper

Gattaca

Wow! I’d have really appreciated this steer when I started out! But there again, maybe I value them more because I’ve accumulated them slowly over the years. If you know of others please do let me know. Just add a comment to this post or contact me via my website. DVDs

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Topical stuff

I know my antennae are always tuned to pick up the merest sniff of medical ethics but this week has been a veritable bonanza in the media. Would these headlines grab you too, I wonder? Do the questions trouble you?

Liverpool-pathwayThe controversial Liverpool Care Pathway, for example. Designed to ease the final hours or even days of a terminally ill person’s life: is it being abused? The son of an elderly woman who died in an Edinburgh hospital thinks so. He has accused her doctors of ‘murdering’ her, and the newspaper headlines certainly make the case sensational. At the moment the circumstances are being investigated by the Scottish Fatalities and Investigation Unit, and if anything suspicious is found, it will trigger a police investigation – the first relating to an individual death to be officially dealt with in this way. How do you feel about the LCPathway?

3-parent babiesThen there’s the major news that this country is set to become the first in the world to approve the creation of so-called three-parent babies – a way of allowing couples with major defects in their mitochondria (the bit around the nucleus that contains around 37 of the total 2,000 genes) to have healthy children who don’t die young. What a stooshie that’s causing! And that’s in spite of the fact that it’s the nucleus that carries all the genes for looks and behaviour. And you’re saving babies and parents terrible suffering and distress. Ah yes, BUT it’s genetic modification on human beings, with permanent results for generations to come. And the nucleus and mitochondria don’t operate in isolation; they talk to one another. And the mitochondrial cells control metabolic functions. Who knows what you might be unleashing … and unable to reverse. How say you?

Mandela decisionsThousands of miles away there’s another scenario playing out that currently has the media here in a frenzy. 94-year-old Nelson Mandela is on life-support machinery. The world reveres this man. His countrymen are fervently praying for his recovery. He has six children, 17 grandchildren, and 14 great-grandchildren, who are riven by disagreements and conflict at a time of private sorrow. Decisions about allowing life to end are notoriously difficult – in this case they are set against a nations’ wishes, cultural diktats, family feuding, in the full glare of the media’s eyes. Who should decide? What should they decide?

The joy of lifeRock guitarist, Wilko Johnson, (real name John Wilkinson) is dying of cancer but he’s been inspiring millions with his up-beat approach to the life he has left and his sheer humanity. He had no idea apparently until he saw so much emotion at his farewell concert, that people felt a real personal affection for him. He knows cancer intimately – his wife, his mother, and co-founding member of Dr Feelgood all died of it; he has no faith to sustain him; and yet, in many ways he says, he feels more alive than ever, and a special joy in existing, because he knows every day is special.  How would you respond?

Gene copyrightSpeaking of cancer … should companies be allowed to put a copyright on the genes that cause the disease? Myriad Genetics patented the two major breast cancer genes, BRCA1 and BRCA2, even though the search for the genes was a collaborative effort by thousands of scientists, many of whom were publicly funded. The firm also holds European patents on tests for the disease. In practical terms this means that the UK might be at risk of infringing copyright laws (with all the consequent lawsuits and outstanding royalties) with their own tests using publicly available genetic data. When Angelina Jolie revealed her double mastectomy, she drew attention to the cost of genetic testing (in the region of $3,500). What do we in the UK with our free-at-the-point-of-need NHS make of all this? What do you think?

Phoned decisionsI could go on, with this week’s tales of and life-and-death decisions being made over the phone;

Opt-out donationand Wales approving a system of presumed consent for organ donation, oh and altruistic organ donation (in journals and weekend supplements); and … but I won’t. Your brains are probably crying out for rest after the questions I’ve already thrown into your court.

By way of light relief, in between all this heavy-duty thinking, and working on the publication of Over my Dead Body, I’ve been reading Melisa Hill’s Before I Forget. It’s about a girl whose memory is destroyed in an accident. From the blurb it sounded to be close to my interests, so I picked it up in a supermarket. But … oh dear. Not my kind of thing at all. Style of writing, plotting, characters – I wanted to edit everything. And yet she has THE NUMBER ONE BESTSELLER plastered over the cover.  She’s published by one of the big firms: Hodder. Ho hum!

 

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A grand diversion

My trip to London felt a bit like the Grand Tour of yesteryear: London via Chatsworth and Woburn, so today’s post might be a tad exuberant.

I’ve wanted to visit Chatsworth, the family seat of the Duke and Duchess of Devonshire, for ages. I’ve watched programmes about it, read about it, but it still blew me away. You need to experience it though, not just see it, and I know a few amateurish photos won’t capture the sheer scale or magnificence, but they’re all I can offer of …

the glorious setting ….the stunning settingthe beautiful house (complete with gold window frames!) …the beautiful buildingthe stately entrance …the stately entrancethe exquisite woodwork …exquisite woodworkthe priceless paintings and ornate furniture …priceless paintings and ornate furniturethe fabulous chandeliers …fabulous chandeliersthe amazing sculptures …amazing sculpturesthe famous cascade (gravity fed) …the famous cascadeand the stunning gardens …lovely gardensWow, my old English teacher would have a conniption at all these superlatives!

Woburn Abbey wasn’t open …Woburn Abbeyand the gardens in March, with temperatures below zero, aren’t a riot of colour, but the deer park was well worth seeing …the deer parkas were the antiques …antique centreand the quaint Woburn village …Woburn VillageAnd I came away with more than I set out to buy.

By the time I arrived for my workshops about medical ethics I felt totally refreshed and ready for anything. And I was in for another treat.

The sessions I run are very much interactive, and the delegates at this conference were superb, very willing to challenge and be challenged, and to move outside their personal comfort zone (always an aim of these events). We made the most of a whole day devoted to exploring just how far we would go in assisting conception and death, supporting choice or setting limits. All great fun.

And now we’ve returned to Scotland to find spring submerged in a second winter!But at least I’m not tempted to leave my desk and get out in the garden. Onwards and upwards.

 

 

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The 2011 Census

It ought to feel like an auspicious moment in history, but somehow filling in squares with a biro pen, or tapping keys on the computer before despatching data for the 2011 Census into the ether, doesn’t have the aura of ‘momentous’ about it.2011 census form

I couldn’t help comparing my neat sterile form with my grandfather’s entries 100 years ago.1911 census Scratched with a blotchy nibbed pen, mistakes scored out, hardly legible … but so much more evocative of an era. We discovered this gem while doing my mother’s life history a few years ago, and it conjured up amazing pictures of a generation when life was very different indeed.

It’s easy to romanticise the past, but in reality life was hard for many people.My grandparents with some of their family in 1926My grandfather, for example, born in 1874, was orphaned as a small child, and started work at 10 years of age. He and his wife had twelve children, four of whom died in infancy. My mother was the youngest of the twelve, born 25 years after the eldest boy. In spite of the size of the brood and the fact that his wife was a frail woman, my grandfather was a largely absent father – away at the war, or travelling to where work was to be found.

Hard it may have been, but what wonderfully rich seams they’d be to mine for novels! What happened to his parents? How did a ten year old cope with work? What did he get up to away from home so much? Why did he lose touch with his remaining children after his wife’s death? My mother had stories to tell that make my conventional life pale into insignificance. But there was still oodles of room to speculate about the gaps in her knowledge and memory.

Maybe I should change tack and start spinning historical novels! But, of course, the medical ethical dilemmas back then weren’t a patch on those we confront today. Our forebears simply wouldn’t comprehend the astonishing conundrums and questions science and medicine conjure up in this 21st century. Stem cell therapy, legally assisted death, pre-implantation genetic diagnosis, cloning, beating-heart organ donation, not to mention modern cures and treatments undreamed off a hundred years ago … they’d recoil in disbelief. No, I’m not going to run out of material any day soon if I stick with this theme.

Thinking of the wealth of history wrapped up in previous generations, though, reminds me of the record of our lives the grandchildren are owed. It’s a task that keeps getting deferred. One of these days it might be too late.

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