Thursday, January 17, 2008

Last night I took part in what will hopefully be the scariest ever media…thing I will ever do.

I was asked to appear as a “Witness” on BBC radio 4’s Moral Maze. Naively I said of course I would and brightly informed the researcher I’d been on You and Yours at which point she said “erm, Moral Maze isn’t quite as...friendly as that.”

It turns out that as a witness you go into the room to be cross examined by members of the panel. And what made me determined to go no matter how terrified I was was one of the panel was the woman who wrote this.

One of the worse cases of irresponsible journalism I have ever seen. I cannot however just write that, as that would merely be bitter and accusational without laying out my qualms with her piece. So here they are.

“The news that Gordon Brown has thrown his weight behind a move to register everyone automatically as an organ donor unless they opt out has all the hallmarks of a major spin operation….If this is supposed to assist Mr Brown’s new year campaign to restore his waning political fortunes, it’s a pretty rum way of going about it.”

Straight away this makes no sense. I will freely admit now I do not have a political brain, but I don’t quite understand how raising an issue as controversial as opt-out can be seen as a political move to gain favour with the public. Surely he’d pick something more people were passionately for, rather than one with such heated debate if it was all about gaining votes?

“There is no more fundamental human right than control over our own bodies and what is done to them, both in life and death.”

Totally agree. Which is why whatever system we have there must always be choice. And there is. Opt in, or opt out, whichever system, the person chooses their final stance on the matter.

“The inescapable implication of a donor opt-out is that we no longer possess such control. The presumption instead is that the state controls our bodies and can do what it likes with them after it declares us to be dead.”

This is the thing that bugs me the most – this discussion flying around that our autonomy will be breached if we switch systems. Firstly autonomy means the right to make your own choices so that’s fairly self explanatory as to why the whole argument is invalid, however lets assume that it’s not and take a closer look.

Again it’s an illogical argument, unless you are saying that in the current system the 70% people who wish to donate their organs are having their autonomy breached. I suspect if I’d had a chance to ask Ms Phillips that she would have said “no because they can choose to donate” and that’s exactly my point, in an opt-out system you can choose to opt-out. And it makes no sense giving more moral weight to the right not to donate than it does to the right to donate. So either way according to her, people are being oppressed, well in that case the logical move would be to oppress as few people as possible, thus switching to presumed consent so only 30% have to opt out.

“There is, however, a yet more fundamental objection to the opt-out proposal. This is the serious doubt whether people whose organs are harvested are indeed dead.”

This part of the argument is what incensed me the most. People getting their knickers in a twist about their rights is one thing. Claiming that people who are brain-stem dead (BSD) are not actually dead is just plain wrong. And it’s scaremongering. And worse than that she’s now not arguing against opt-out, she’s arguing against organ donation as a whole.

I figured that I didn’t know enough about BSD to counter her on this so I researched it. Which is fairly easy to do and I urge anyone who is now nervous to do the same. The brainstem controls our body’s unconscious functions – all the things like blood pressure, gag reflex, pupil dilation, temperature control, water/insulin balances…these things the body does automatically to keep us up and running. And the most important one (as I see it although perhaps that’s because it’s closest to home) is that it controls our ability to breathe.

To test for BSD there are a number of comprehensive tests carried out at two separate times by two separate doctors. Both must have more than five years medical experience, one must be a consultant. Neither can have anything to do with a transplant team. One of the tests they do is they unhook the ventilator for 10 minutes and monitor the blood gases awaiting a reflex breath when the Carbon dioxide level gets to the stage where it would trigger a breath in any living person.

“As a result, people are declared dead while their heart is still beating unassisted and blood is still circulating round the body.”

If she’d read any of the medical documents floating around (which I assume she must have and just chose to ignore this) the heart will stop even if the person remains on life support within hours to days of BSD occurring.

“Some give ‘brain stem dead’ patients a general anaesthetic before removing their organs. But whoever heard of anaesthetising a corpse?”

First of all I couldn’t find any reference of a GA being administered. This doesn’t mean however that it isn’t as I might have been reading all the wrong articles. However she goes on to explain that the reason a GA is administered is due to the abnormal rise in blood pressure. What is supposed to control blood pressure? The brainstem.

“Doctors are discovering that, among patients in a persistent vegetative state whose brains are presumed to have stopped functioning, there is in fact a large amount of brain activity.”

Completely different scenario and I feel she is deliberately playing on people’s misconceptions and fears here, as PVS is not BSD therefore has nothing to do with the tests done before organ donation.

‘Since the patient is not truly dead until his or her organs are removed, it is the process of organ donation itself that causes the donor’s death.’

This just made me want to cry. Imagine all those wonderful donor families out there who have up until now been taking some comfort from the fact they saved lives with their decision and are suddenly panicking that their decision was the thing that killed their loved one. To anyone reading this in that position, as I said on the radio, if you had said no, all that would have happened is they would have turned off the machines and your loved one’s heart would have stopped. They would have died and no other lives would have been saved through organ donation. They were already gone.

“A system the public believes embodies the highest form of altruism rests instead on deception and unlawful killing.”

Again I merely view this as scaremongering – using highly emotive language which she has not been able to back up in her article. Interestingly when asked if she would donate her organs she totally avoided the question. I also wish I could have asked her if she would accept an organ if she were to need one, or if a loved one of hers needed a new heart how she’d feel...mind you I’m sure she would have an answer for that too. Shame she was too cowardly to voice it which would have made me a tiny bit more respectful of her viewpoint if she'd said at least that she'd refuse an organ should it come to that.

OK rant over. But boy was it tough live on air. I hope I came across ok. Oh and before I get told off for not telling people, you can listen to it here (click on listen again).

The one thing the whole debate did make me think twice about is the presumed consent idea removing the gift element. I need to do some more pondering on that one before I come to a conclusion. I also believe that with all the huge misconceptions and myths floating around, months and months of education and reassurance would be needed before any kind of switch if one was to happen. And in the meantime the government has pledged £11 million to help fulfil the ODTF’s 14 point plan (readable here) so let’s just wait and see if they honour that...


Anonymous said...

The family and I thought you did a fab job against what can only be described as typical Daily Wail alarmist journalism.

Yes there are many discussions to be had about how to move things forwards - getting the government to make you head of public education on the matter would be a start!

Recycle, the possibilities are endless!

K said...

Dear God..... I'm only surprised that, as a Daily Mail journalist, she didn't extend her argument into how the nefarious organ-filching doctors were probably immigrants who've come over here to suck the very marrows of the UK taxpayer, and how those poor, innocent organs are probably going to be transplanted into a filthy homosexual, or single mother.

Shocking stuff. And, sadder still, not one of the comments on the story takes any issue with it whatsoever.

I hope you made mincemeat of her, Emily. x

Anonymous said...

Good comeback! ;0) x

Anonymous said...

Emily you did such a great job up against those awful ignorant people on the radio. This blog also itterates what i was thinking about that god awful daily mail article. Argh the daily mail makes my blood boil - the times i'm angered by an article in the paper are more often than not from the daily mail. grrrr. Well done Em, you're a star!

Anonymous said...

I agree, I feel desperately sorry for donor families listening to this misinformation. Of course she has the right to an opinion, as we all do, what is dangerous is that she has no medical training and yet she is allowed to present her diatripe as "fact" to millions of people in a newspaper with a massive circulation. She shouldn't have been on the programme anyway as her views were against organ donation as a process and had nothing to do with the way consent was achieved.

As you know, I'm not a passionate supporter of opt out. I feel that its taken the public a long time to build up trust in the way the NHS obtains clear consent and that there is a valid argument that going out of one's way to register a "lack of objection" is not the same thing as "giving consent". I also value the fact that for recipients, potential donors and donor families, the fact that they chose to give (as opposed to being presumed not to object) is a very valuable part of why organ donation is so special.

However I was so proud of the way you held your own in that debate and I think when you pointed out to Ms Phillips that the only other alternative to the person's organs being retrieved was to switch of the ventilator and bury them, she did actually go quiet (for a second)! Also - perhaps most importantly of all - you held a huge torch up for why organ donation is such an incredible act of generosity and why people should consider doing it. With all the crap that woman was spouting, it was the one thing that overshone her :o) xxxxx

Anonymous said...

Well done Emily - I think you did a magnificent job in getting your points across and you didn't sound at all out of your depth or nervous! Seriously, you are a great representitive for the organ donation cause.

Anonymous said...

What a rediculous article, such a load of rubbish backed up by...oh, nothing! Well argued, Em - I hope the donor families out there are comforted by what you've said :)


Anonymous said...

Melanie Phillips is a scaremongering ignorant fool. You only have to look at the excellent Rhetorically Speaking ( (a blog which takes a critical look at the new and the rubbish that is reported, and so on) to see just how often she crops up talking venomous nonsense. You name it, she has an opinion on it and it's usually ill-informed, biased, inflammatory and smacking of stereotypes. Someone mentions 'filthy homosexuals/single mums' and they've hit the nail on the head for her type of journalism.

As you may recall I used to work in Tissue (rather than organ) transplant. We often got donations from donors who had been lined up for organ donation, but whose hearts had stopped beating before their second BSD test could be done. They were known as Non-Heart Beating donors and they can't be organ donors (I don't think) but could still help (and sometimes save the lives of) over six people through donating their tendons (times four) heart valves (two donatable from a healthy heart) corneas (times two) and skin (used for burn victims, such as after the London bombings, where england's skin banks were emptied out).

I have always felt that if we are to move to opt-out, then more education is important, precisely because people don't know (in advance) 'how their loved one will die' when they donate. However I believe entirely that if it becomes commonplace knowledge then not only is opt-out the right thing, but that remarkably few will in fact opt out.

Anonymous said...

What a hateful woman. But she writes for a hateful newspaper. I don't hate anyone but if I did, I would hate her. And her rubbish paper. And I really hope, that someone she loves needs a kidney one day. And I hope they get one. And then I'd like her to write another article.

Anonymous said...

Emily, I totally agree with you and well done on the radio interview.

I just wanted to say that I myself don't regard the opt-out system as taking away the gift element of organ donation. Just because donation is presumed, doesn't negate the donor's reasons for being a donor in the first place - if they didn't opt-out then they obviously wanted to help someone after their death.
Just because both my partner and I presume we will buy each other christmas/birthday presents does not mean, as either reciever or giver, we don't see it as a 'gift', do we?

Jac said...

I listened to the programme online and I must say a huge well done!! You held your ground well and really got your points across in an articulate way (as usual!) That article really does make the blood boil - but then remember that most readers will see it for what it is - a piece of sensationalist nonsense.


Anonymous said...

Emily, this is an utterly fantastic post!!

Except I think you're being far too kind in assuming this woman read ANY medical research before parading her ignorance.

I was appalled by the tone of the anti-opt-out "journalism" and public comments when this came this week.

I'm probably in favour of an opt-out system; but there is a serious debate to be had. But NOT along the lines of that dreadful woman's articles and all the similar ones in the Telegraph, Times and no doubt other places I couldn't face going.

Anonymous said...

Emily I heard you on the radio last night and I thought you were fantastic and so calm in the face of that hideous woman. I really dislike Melanie Phillips, how dare she say the things she said, she comes across as so morally superior, she makes my blood boil. I was also disappointed by Clare Fox as well though, I thought at least she would have a different stance, it was only Ian Hargreaves who seemed to have any sense. I think I would have broken down in tears but you were so dignified, well done. I think most intelligent people think Melanie Phillips is a hateful person, I've always disliked her and disagree with everything she says! Well done again and Michael Buerk loved you! AHx

suzie said...

Well done Em, I listened to the whole thing from the link on your blog and I don't know whether I could have stayed as calm as you did.

As for my thoughts on the whole debate, I have views on a few of the points raised but tend to go into waffle mode so I'll keep it for another time.

Once again well done for keeping organ donation at the forefront hun.


Anonymous said...

Gosh, just read that woman's article... She is against organ donation full stop, never mind an opt-out system!
I am shocked at how such people are allowed to publish their misconstrued ideas as facts (such as the BSD thing...) We are never going to be able to educate the nation on organ donation properly with people like that around.

/rant ;)

Anonymous said...

well done Emily such an inspiration to us all and under difficuilt conditions too from sounds of things!

take care hope you keeping well?
hugz Elaine & Rach xx

ps saw u lovely article in womans magazine again last week or so :D nice piccy :D

Rich said...

Couple of things. An opt-out system is not choice. Many people will not be aware they are obliged to opt-out and will have their organs removed without their consent.

I knew that journalist was form the Daily Mail before I clicked the link. Anything written in that paper needs to be digested with a huge table spoon on salt.

Her arguments though are no more tenuous than basing a requirement for an opt out system on this phantom 70% statistic that is wheeled out my transplant campaigners. You can't possibly rely on a High Street survey stat for something as profound and controversial as this subject.

People say whatever will see them in the best light. Saying and doing are very different things however. Donor cards are not difficult to get hold of, if the public really were that keen to donate more people would have them.

The State cannot impose an opt-out system on the public. Many donor card carriers have said they'd actually tear their cards up if they were legally obliged to opt-out.

This may be a case of be careful what you wish for. If an opt-out system were imposed and 90% did indeed opt-out this would be a shame. You can't make demands with something like this, it has to be a gift relationship.

As a compromise might the Government issue everyone with a donor form and invite us all to decide one way or the other. But an invitation is all it can be and consent cannot ever be assumed.

Hel said...

i think you did a great job dismantling mad mel's article. it's such a shame that there are people out there, like her and her readers, who seem to have such a distrust of knowledge and expertise (not just about BSD but about everything in general). this is a complex issue and can't be effectively discussed by people who remain ignorant.