Hazel McHaffie

degenerative diseases

Modern medical challenges: What do you think?

I’ve just had another filing morning – yawn, yawn. (For new visitors to my blog, that means tucking an accumulation of snippets and ideas into files on different medical ethical topics which might or might not become novels one day.) So I thought I’d share some of the news items with you and throw out a few thoughts for you to ponder or not as you feel so inclined. I’ve supplied links for extra information if you’re interested. No pressure.

Gender issues

An 8 month old Canadian baby has been issued with a health card that doesn’t specify the child’s gender. Single parent Kori Doty is a non-binary transgender person who wants baby Searyl to decide for *themself how *they wish to be recognised.
(*parent’s chosen pronouns)

Over here, the number of children under 10 being referred to gender identity clinics has quadrupled  in the past five years – figures showed that of the 2,016 referrals for children between the ages of 3 and 18, no less than 165 were under 10. (stats from the Gender Identity Development Service – the NHS’s only such facility)

Two young British men (Hayden Cross and Scott Parker – one 21, one 23) have gone public about putting their gender reassignment on hold until they’ve given birth. Both were born female, both have been living as men for a number of years.

And now there’s talk of transgender women receiving donated wombs. It’s a complicated enough process in biologically female patients, with significant risks to mother and fetus during pregnancy. But those who are born male have other issues to contend with such as an inadequate pelvis for giving birth naturally.

A hotter topic seems to be the growing number of transgender people who are seeking reversals, quoting crippling levels of depression and suicidal thoughts, but this development is being kept very quiet according to Prof Miroslav Djordjevic who runs a clinic in Belgrade. Some specialists fear that money plays a part in this with patients accepted for reassignment as long as they can supply the requisite cheque without adequate psychological evaluation and counselling.

Q. What do you feel about
the move to have non-gender specific loos and forms and facilities?
– a lower age limit for reassignment?
– young people who’ve started to transition wanting to call a halt to have babies while they still can?
those subsequently wanting to reverse the process?
transgender women having a womb transplant and giving birth?

Genes and inheritance

The Chief Medical Officer has advocated DNA gene sequencing for every cancer patient in Britain to prevent misdiagnosis, needless hospital visits and ineffective chemotherapy. Testing can correctly identify not just the actual illness but also specific mutations which play a significant role in the success of treatments. On the face of it it’s a big ask: more than 350,000 people are diagnosed with cancer annually and at the moment each DNA test costs around £600. But centralising the testing would reduce the individual costs and personalising the drugs used should speed up treatment and save the NHS a lot of money.

Charlotte Raven was unaware that there was Huntington’s Disease in her family until her father – newly officially diagnosed himself – told her when she was 36 and already had one child. Now aged 48, she’s had symptoms for 7 years and estimates she has at best 10 years to live. She has two children both of whom have a 50% chance of inheriting the illness.

Q. What do you feel about
– the proposal to gene sequence every cancer patient?
the potential discrimination in favour of cancer patients when other disciplines are seriously strapped for cash?
– having the definitive test for a crippling inherited disease yourself?
– the optimal age to tell a child they have a 50% chance of inheriting a degenerative condition?

Fertility

According to research led by a Hebrew university which tracked over 40,000 men, since 1970s sperm counts have fallen by almost 60%. These findings have been likened to the canary in the coalmine – indicative of changes in society and the environment that are damaging health far beyond fertility. Just what should we be doing about chemical pollution, stress, obesity, tight underpants?

A British-born Sikh couple, Sandeep and Reena Mander, whose parents came to this country from Punjab, have launched legal action against the adoption service in their county, Berkshire, after being refused permission to adopt a white child because of their ‘cultural heritage’. The council have only white babies on their register. This professional couple are in their early thirties and have already undergone 6 years of fertility treatment (privately financed to the tune of c£150,000) unsuccessfully. And they have the backing of their local MP – the prime minister, no less! They have now been cleared to adopt in the USA – another extremely expensive procedure.

The senior council of the Royal College of Obstetricians and Gynaecologists – without balloting its members – has voted by a majority to decriminalise abortion at any stage of a pregnancy on the grounds that it has a responsibility to protect women’s health by ensuring access to key services. It isn’t, however, advocating changing the current 24-week cut off period for abortions; rather it seeks to have the restrictions governed by professional regulations not the criminal law.

Scotland has introduced two new changes this month:  women from Northern Ireland can now get free abortions here, and women are allowed to take the abortion bill at home instead of having to be admitted to a clinical setting. i

Q. What do you feel about
– the implications of falling fertility? Should society be being more proactive in your view?  If so, how?
– i
nfertile couples incurring massive expense trying to have a baby?
adoption agencies discriminating in terms of ethnicity, faith, geography, etc?
the availability and legality of abortion?
– the risks to women of inducing abortions at home?
– medical tourism?

Not to mention all sorts of stories and news and stats on NHS resources, performance targets, shortage of health care professionals … never any shortage of material to fire the grey cells and indignation, and get the creative juices flowing. What if …? Supposing …? Imagine if …

 

PS. I’ve done my best to check various sources but please do post a comment if you have more information that runs counter to the brief synopsis I’ve offered.

 

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Bigotry? Intolerance? Prejudice?

We’ve heard so much negative comment lately about people with religious beliefs being bigoted and intolerant, I want to share an entirely different experience with you.

When last year I received an invitation to run a series of workshops on the challenges of medical ethics for a group of Christians (from the Christadelphian Church) near London in March 2012, I confess I hesitated for lots of reasons. But the organisers were very persuasive, and I eventually succumbed to their flattery.

The conference was this past weekend. And I’ve survived to tell the tale.

Life has been very pressurised of late and I had a lot of baggage to shed in order to free my mind up to facilitate group work effectively. So I used the journey south to unwind, visiting two magnificent National Trust properties. The first was Fountains Abbey in Yorkshire,Fountains Abbeywith its awesome architecture and stonework, and its dramatic cloister.The cloisterJust standing surveying all this ancient beauty, soaking up the centuries of peace and devotion, is balm to the troubled soul.

And then on to Ickworth in Suffolk, very grand, housing fabulous paintings, and also steeped in history.

(SORRY: photos inadvertently lost.)

Oh, and a quick trip to nearby Ixworth Thorpe to see the house where I was born. I’ve only visited once before, taking my mother round her old haunts, and it holds no memories for me because I was a mere babe when we moved from here, but it’s part of who I am. (No plaque outside yet though, I see!)

Anyway, suffice to say I’d shed a lot of tension before arriving at the High Leigh Conference Centre, in Hoddesdon, Hertfordshire. Another lovely building looking great in the sunshine.

From the moment I introduced myself the team couldn’t have been more welcoming and supportive. The whole atmosphere was warmly inclusive. So far so good.

I had five and a half hours to fill with my workshops so that took care of most of Saturday. My sessions are totally interactive and the course they run is partly determined by the cues I get from the participants, which means I have to be ready for anything. Fairly keeps the adrenaline flowing, I can tell you! But I take a few tricks up my sleeve in case things flag.

It’s my belief that, in order to understand the enormity of the choices relating to the big dilemmas of modern medicine, and to empathise with individuals and their families grappling with such questions, you need to engage emotion as well as intellect. So throughout the sessions, as I presented increasingly difficult scenarios, the delegates imagined how they might feel in such situations (eg being infertile, or dying from a degenerative disease, or suffering from psychiatric disorders, or listening to a child begging not to have any more aggressive treatment), and they moved on a continuum from very comfortable (represented by soft easy chairs with lots of cushions) to very uncomfortable (pebbles on seats and upended chairs). There was a fence to sit on for those who couldn’t decide, and we even introduced a moral high ground (high seat covered in a velvet cloth) for the few who took up a fixed moral position.

Were these Christians bigoted or intolerant? They were not. Were their minds closed to new ideas? Not a bit of it. Were they holier-than-thou? By no means. They were impressively honest and compassionate and realistic. Yes, they live to a high standard, based on a foundation of firm principles, but it was obvious there was no party line when it came to assisted dying, abortion, infertility treatment, organ transplantation … They thought for themselves. They might not agree on the solutions, but they challenged each other healthily, respectfully. They acknowledged their own prejudices, recognised the weaknesses in their arguments, and had the courage to admit there was room for change within themselves. Every single person allowed themselves to be uncomfortable, to alter their position. We laughed a lot. Some tearfully shared painful experiences. We engaged honestly with the issues. And the world is a better place because there are folk like this who have the courage and humility to accept that there are no easy trite answers, who are ready to really listen, to understand, and to support others going through life’s traumas, without thrusting their own opinions on them.

Altogether a thoroughly enjoyable and heartening experience.

Indian proverb: Judge no man till you’ve walked a mile in his moccasins.

 

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