Hazel McHaffie

allocation of resources

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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Ethics in the news

Every now and then I like to give you a glimpse into the world of medical ethics that continually fires my imagination. Just since I wrote my blog last week we’ve had the following stories in the media – apologies in advance, the list grew and grew as the week went on! See what you think about them? Do you have any simple answers? What would your solution be? Where does your mind travel? I’ll give you links so you can find out more about any of the cases you’re interested in.

Thinking about a solutionA grandmother has given birth to a surrogate child for her single son in his mid-twenties using his sperm with a donor egg. A judge has ruled that, though unusual, the arrangement is entirely lawful. But … is it ethically acceptable? Who is brother … father … mother …? What about sixteen years down the line? My mind goes into overdrive. How about yours?

Zach Parnaby is 20 months old and his family are already working down a bucket list of his favourite things before he dies. He has Krabbe Leukodystrophy. A pinprick screening test could have detected the disease soon after birth, giving them the option of a bone marrow transplant, but his parents were told it isn’t done for cost reasons. Is this reasonable and just? What price would you put on a child’s life? How would you juggle competing demands for limited resources?

Sarah Marquis is a 41 year old lawyer specialising in white collar crime. In 2008 doctors failed to spot that her appendix had burst and she was rendered infertile. The hospital have admitted liability but their lawyers are insisting that she deserves less compensation because she has been free to pursue her career without the breaks necessary for child bearing. Is this appropriate and fair? What if she went on to have a child through IVF … ?

17 years ago Zephany Nurse was stolen from her sleeping mother’s arms. But now, by a coincidence, she has met up with her biological sister and been reunited with her birth mother. Her abductor, whose own child was stillborn, apparently cared for her well, and this week we heard that Zephany refuses to testify against her. Should the woman be allowed to go free? Who do you think should best occupy the parenting role?

QuestioningFrom this week Canadian patients will be allowed to ask their physicians to help them end lives that have become burdensome to them. Their Supreme Court ruling was unanimous. Do you agree with them? Should the UK follow suit, d’you think?

Seven years ago an NHS consultant had a malignant growth removed from her thyroid gland and was discharged home the following morning, even though she was already showing signs of a dangerously low calcium level in her blood. However her medical knowledge told her she was in big trouble and she dialled 999, saving her own life. She has just been awarded a six figure sum by the hospital trust who admitted liability. How would this have all panned out if she’d been your average ordinary Joe Bloggs?

A US study has found that hard physical work damages a man’s sperm. So …? Does this give men the right to refuse to work on the grounds of their human rights? This could get interesting!

A proposal has been made that seriously ill patients could be offered organs from high risk donors (eg. cancer patients, smokers, the elderly or drug users) to help address the chronic shortage of available organs for transplant. Let your mind ramble over the possible scenarios of this in terms of the possible donors … Would you accept second best … for yourself? … for the person you love most in the world?

ImaginingThe NHS has just launched a controversial online calculator. It’s said to predict when someone will have a heart attack or stroke. Hello? Would you wish to be told that? Would you alter your lifestyle to prevent it? Would that negate the prediction? A couple of days later we’re told that ‘two families will be the first to receive personalised care based on their DNA as part of a national plan to sequence 1000,000 genomes.’ Is this science fiction coming true? Or a utopian dream? Where will it lead?

Back to the humdrum everyday … A survey of more than 1000 cancer patients has found that 1 in 10 is left unwashed, undressed or untoileted because of a lack of careworkers. And we all thought cancer was high priority; it was the elderly who were neglected. But then we hear that 26% of councils in England failed to properly consider the needs of people with arthritis, and 66% failed to consider back pain – conditions which affect 7 million people in England and account for £5 billion of NHS spending. What do these studies say about the allocation of resources and priorities? Oh, but hey ho, on the same page … scientists have found a class of drugs that dramatically slow ageing … in mice at least. So is this where the money will go? An elixir of youth? Ahhh, wait a wee minute … plans are in hand to build the UK’s first proton beam therapy cancer treatment centres in London and Manchester. Just who is deciding how and where the money is being allocated here? And if you were in charge …?

Still with resources … As from this week 16 very expensive drugs which have been clinically proven to increase the lifespan of terminally ill patients, are to be removed from the approved list of the Cancer Drugs Fund, as announced in January. Imagine your beloved was dying prematurely … Is it possible to reduce the well-being and hope of any family to pounds and pence? Should drug companies be allowed to raise obscene amounts of money from the tragedies of others?

Ex-serviceman Chris Graham is 39. He has a 6 week old baby. He also has early onset dementia. It’s in his genes. His brother has it; he’s 43 and totally incapacitated and dependent on others. Their father, grandfather, aunt and cousin all died of it in their forties too. Chris might have passed it on to his baby son. At what point should a halt be called to this perpetuation of tragedy? Should it ever? What if scientists modified the family germline …?

These news items were all reported in just one week of the year – a mere 7 days. They’re the kind of clippings that find their way into my ideas folders because they set my brain asking, ‘What if …?’. ‘Supposing ….’ ‘Would this be believable?’ Trouble is, my brain has a finite capacity … and shrinking! And there simply isn’t time to turn all these possibilities into stories.

(NB. For the purposes of this blog I’ve made no effort to pursue the facts behind these stories; I’m just sharing what anyone might know from the papers.)

 

 

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