On the complexity of making clinical decisions…

Stephen Nolan has featured the Gareth Anderson situation again this morning for most of the show. As he notes, the Health Minister is now on his own as far as the other parties are concerned. The DUP wants a review. The SDLP, Sinn Fein and now this morning, the Alliance Party have all called for a similar review. He’s also just responded to Liam Clarke’s article in yesterday’s Sunday Times and has confessed he doesn’t have an organ donor card: given this is a question of scarcity that’s a key consideration here, if you’re in the UK you can register here, in Ireland you can get a donor card here. Below the fold we carry a short piece laying out some of the general medical context to the tragic situation young Mr Anderson faces from a Slugger reader:

One cannot but feel for the plight of Gareth Anderson who is seriously ill in a London Hospital, nor in any way criticise his father, who is considering legal action to try to help save his son.

There seems to be considerable political interest, although Michael McGimpey is surely right in his assertion that he cannot force change to organ transplant rules.

Some of the political interest seems to focus on the fact that normally a six month period of abstinence from alcohol is required prior to accepting a patient onto the transplant waiting list: this length of time appears to be unavailable to Mr. Anderson. Whether or not he will be assessed or accepted remains to be seen.

The current guidelines are here and although the six month abstinence period may not always be required it seems to have been a significant factor in a recent decision not to transplant a young patient.

It must be remembered, however, that whatever happens if he is to receive a liver transplant someone will have to die (to be a donor) and someone else will receive a liver later and hence, they may die. Although there has been some progress in terms of living liver donation this is still a very small minority and is unlikely to be possible in the vast majority of adults in the foreseeable future.

Transplantation units are of course used to making these sorts of judgements which make Solomon’s look easy and they have to make them extremely frequently. According to Prof Gilmore people with a short history seem to do less well when transplanted (see audio piece here). It is also important to mention that even if a patient has had a successful liver transplant, that does not offer a normal life expectancy and maintenance of the donated liver requires long term immunosupression (albeit less potent than for many other donated organs).

Sadly there is currently no equivalent of renal dialysis for liver disease patients and as such the non transplant options for patients with severe liver failure are extremely limited.

The effect of any judicial review or political pressure is of course difficult to gauge though any sudden change in transplantation guidelines forced by putative legal action would undoubtedly throw the whole system into chaos. Although an increase in organ donation would no doubt help in these dreadful situations (50% of families still refuse transplant donation) there is a grim fact that the improvements in trauma and intensive care services have actually resulted in a reduced number of organs available for transplantation.

Of course, sadly, no discussion of liver disease would be complete without noting that it is rising in incidence and this is largely caused by increasing consumption of alcohol and from an earlier age. Very recent data have suggested some decrease in alcohol consumption in the 16-24 year age group but an increase in excessive drinking in Northern Ireland. The causes of increasing alcohol consumption are of course multiple and varied: however, a very major factor is the increasing relative affordability of alcohol.

The Scottish government (Scotland’s problems are worse than any other part of the UK) has begun to attempt to address this issue with the possibility of minimum prices for alcohol though Gordon Brown has rejected this approach for the rest of the UK.

One final point worth making on liver disease has nothing to do with alcohol: paracetamol is an extremely safe and effective medicine used by countless people every day at the appropriate dose. However, in overdose it is can be fatal (again from liver failure) causing about 100 deaths in England and Wales each year and about in Northern Ireland (page 10).

The story of Gareth Anderson is a very real and a very human tragedy. It will no doubt be suggested that whatever the outcome people (especially young people) will stop and think about the dangers of excess alcohol. That is of course a completely naïve hope: in reality young people will continue to get drunk and get themselves into fights and end up in the A+E departments of our hospitals either drunk or injured and every now and again someone will die from the effects of excess alcohol whether acute or chronic, direct or indirect. However, the vast majority of people (even young people) will either by good luck or by a degree of personal responsibility drink alcohol without suffering any major ill effects.

There is a place for legislation and there is also a place for personal responsibility. In addition there is also bad luck, and Gareth seems to have suffered extraordinarily from this.

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  • Seceder

    As i said before, I have absolutely no issue with Gareth Anderson’s father attempting to raise this issue – but I do have a problem with a radio host becoming the individual to set health policy.

    With all the best will in the world there are hundreds of GAreth Anderson situations facing doctors every day – treating all manner of conditions with patients of different ages and circumstances etc thats why guidance has to be given, set in the cold light of day without the extreme pressures of a life and death situations.

    Likewise that is why guidelines must be followed. Cruel heartless and dispassionate decision making is horrible but thats the best way in these circumstances.

    Clearly the jumping of the queue in cases like this means someone else, unseen, without the Nolan show, suffers.

    Just think – what if the next individual on the list is a 24 year old alcoholic mother of three, she kicks the drink, struggles through the six month waiting period and is next on the list. her case is for herself and her children is she more or less deserving than a 19 year old with no dependants? the answer neither is more deserving they just need to meet the criteria.

  • Mick Fealty

    Nolan’s been at pains to note that he doesn’t want queue jumping. He’s now focusing on the six month guideline for alcohol related cases, and Prof Williams’ assertion that some centres are treating that 6 month ‘guideline’ as a ‘policy’.

    It seems a pretty fine distinction and it comes from a guy who despite his distinguished career, is now long retired from the profession. The main value seems to me to be in listening to some of the experts he’s talking to, none of whom, it has to be said, seem to be exactly backing him up. And, maybe just getting people to get out there and sign up for donation.

    In the UK they run a register. In the Republic you simply ring up the Irish Kidney Association (linked above) with your name and address and they send you one out, regardless of whether you’re in the north or the south. In both cases it lets the authorities know of your intentions and allows them to contact your next of kin to ask their permission.

    It’s not legally binding, but if more people were to talk about it within their family circles, perhaps a greater proportion of possible donors will make actual donors.

  • a Slugger reader:

    Hmm. Or a Slugger blogger who normally writes on different themes?

  • Sarah Palin

    The term “Death Panel” all of a sudden doesn’t sound so ridiculous, does it?

  • Laughing (Tory) Unionist

    I’m not sure what we need to concede to whom – Tyrone to the Free State? – but I for one will willingly pay any price if the BBC will decommission Nolan.

  • L(T)U

    Seconded. Thirded. Fourthed. Ad infinitum.

  • willis
  • Loki

    In all this row and noise, I’ve been interested to note one thing. The DUP has a long history of being anti “the devils’ buttermilk”, almost to the point of hysteria; yet here we have them demanding a case review by the Health Minister cos he’s from a different party, but there has been no mention of the alcohol poisoning that partially contributed to this tragedy. Seems they truly have no principles anymore.
    McGimpsey (and it pains me to say this) is right. The clinical guidelines are there to help doctors make the best possible decision in incredibly difficult circimstances. What, for example, will happen if the Swine Flu pandemic becomes as bad as the Health Service is planning for? Who will say who lives and who dies? medical professionals or the politicians? Because that’s what this can boil down to- politicians jumping on a band wagon and trying to score cheap points against a political opponent or doctors and nurses being allowed to do their job.
    I know this is utterly devastating for the family, and if I was Gareth Anderson’s father I’d do anything to keep him alive, but Nolan isn’t helping and the politicians are vultures. Perhaps the Assembly could turn its attention towards the availability of cheap booze and the lax licensing laws rather than pressurising people in an alreadty difficult decision-making process

  • Seceder

    Loki,

    couldn’t agree more, when you consider our politicians can’t agree where to build a sports stadium it just makes me thankful none of them with 2 exceptions are doctors.

    As for dealing with cheap alcohol long over due

  • willis

    Loki

    You are right about the DUP and the politicians generally, however though it may stick in the craw, there is no doubt that Gareth Anderson’s father got action by going on Nolan.

  • Loki

    Willis, as I mentioned above, I’d probably have done exactly the same thing. My kid, better or worse sort of thing. It’s hard-wired into parents, even when the kids are grown-up and flown the coop.

  • willis

    Strangely as I was coming home I saw a group of what looked like 15 yr olds just about managing to carry Tesco bags filled with what looked like a lot of 2l bottles of cheap cider.

    Obviously the furore has had an educational value.

  • Big Maggie

    I listened to Nolan this morning and learned an interesting fact: NI is way below the UK average when it comes to organ donation.

    I wonder why this is. Hubby and I spoke about it and he recalled an aunt who’d had a foot amputated many years before her death. She’d had it frozen and her will specified that it should be buried with her. She was a staunch Catholic, you see, who believed in the resurrection of the body intact on Judgement Day.

    Could the same thinking apply to our fundamentalist Protestant friends? Is this one of the reasons for the reluctance to become organ donors?

    Anyhow, the less superstitious among us should do the decent thing and register.

  • cut the begs

    all convicted child molesters should be made donate organs taking 1 of any 2 first on conviction then the heart liver ect

  • Big Maggie

    cut the begs,

    While with you in spirit I can’t see legislation like that being nodded through anytime soon.

  • pól

    CTB and BM, surely you can appreciate the dangerous precendent that that would set? Remember, in the criminal courts, you only have to be proven guilty beyond reasonable (i.e. not all) doubt.

    The harvesting of a single innocent person’s organs would be disgraceful, and I find the whole idea frankly repulsive anyway.

    I think we really need to consider an opt-out rather than an opt-in register for organ donation. Unfortunately, many people either never get around to it (me until today, shamefully – I’ve always been really pro-donation, but never bothered signing. My parents know that they are to give consent though) or have some irrational belief that they need to buried ‘intact’.

  • Big Maggie

    pól,

    I’m sure cut the begs wasn’t serious; I know I wasn’t. A prison inmate sans whatever organ would need extra medical care and would therefore cost the taxpayer even more.

    I’m with all the way on opting out. Why would anybody choose to opt out? It would be interesting to hear the reasons given.

  • abu nicola

    Guess who left his hospital ward last Wednesday and slipped over to a pub across the road and tried to order a pint?
    If a person can’t stay off the booze for a week or so, how can they be expected to stay sober for 6 months?

  • Neil

    http://news.bbc.co.uk/2/hi/uk_news/northern_ireland/8220301.stm

    My heart goes out to them all. Wee man must be losing it to go to the bar. Hope, pray that they can fix him up, but he ain’t doing himself any favours.

  • Laughing (Tory) Unionist

    Could we cut something, anything, out of Nolan and give it to this unfortunate?