Monday 15 July 2013

Presumed Consent: Illiberal and Unnecessary

Kevin Meagher writes:

As a general rule to governing, persuasion is always better than diktat. However, the Welsh Assembly government’s decision earlier this month to implement a policy of ‘presumed consent’ in relation to harvesting human organs for transplant, inverts this rule in spectacular fashion. 

First, it has to be conceded that the intention here is clearly a noble one: ensuring there is a plentiful supply of much-needed organs for transplant, with three people dying each day (1,095 a year) as a result of the shortage.

However the question is: at what cost?

Presumed consent clearly makes the very term ‘organ donor’ redundant. Under this regime, there is no donation. It’s replaced by a so-called ‘soft opt-out‘, which in practice means that unless a person clearly ‘states a wish’ otherwise it will be assumed that they agree to have their organs taken at the point of death.

Welsh health minister Mark Drakeford claims the new Human Transplantation (Wales) Bill simply makes the most of the Welsh people’s “generosity”. The legislative change is expected to take effect from 2015 and there will now be a two-year information campaign to encourage people to sign up to a new register to record their choice, in the event of their death.

So many important supplementary questions abound.

What protocols will be put in place to determine a deceased person’s objection to presumed consent? Will it be a matter only for their next of kin? What about the sider family? If so, what will constitute a ‘family’ for the purposes of determining their view? (ex-wives, partners, girlfriends/ boyfriends of six weeks? Close friends? Neighbours?)

Presumably, the need to harvest the organs means these decisions will need to be taken in a very short timescale. How hard will the NHS be expected to work in determining the view of the deceased?

Will we see a scenario where, say, the organs of an asylum seeker or foreign student – whose family are overseas and may not learn of their loved one’s death for days – have their organs removed, only for the family to later complain that it was against the deceased’s religion or custom?

What is the rate at which organs will be taken? Will they be taken routinely or just to address the immediate known need of a waiting transplant patient?

The risk must be that this significant change in the relationship between the citizen and the state will harm patient trust, with more people actively making it clear they will not give carte blanche approval for their organs to be taken.

After all, scandals involving clinicians abusing their power have taken their toll in recent years, especially the child organ scandals of the late 1990s, when thousands of dead babies and children had their organs harvested – without parental consent.

The subsequent investigations found that more than 100,000 organs had been retained by hospitals and medical schools, while some of them were even selling organs to pharmaceutical companies.

Indeed, it is legitimate to ask in this instance whether a surfeit of organs taken under this new policy will find their way into research labs rather than patients’ bodies, undermining the (admittedly compelling) emotional case for presumed consent.

Underpinning this whole issue, though, is a clear failing by the NHS, over many years, to convince enough people to become volunteer organ donors. Rather than reaching for statute, Welsh politicians should be reaching for a marketing plan to improve this situation and convince more people to volunteer.

Although it is true that there are not enough donors, it is encouraging that this situation is rapidly improving. Since 2008 there has been a 50 per cent increase in organ donations, leading to a 30 per cent increase in transplant operations.

To convince as few as 1,100 more people a year – just 0.001 per cent of the UK’s 62.7 million population – to donate their organs seems eminently achievable without recourse to such a dramatic extension of state power.

The rise in donations since 2008 is generally attributed to the persuasive skills of trained nurses explaining to grieving families how their loved one can leave a powerful legacy in assisting another person to live. This is surely the right approach, and, more importantly, it is evidence-based and clearly working.

The change in policy will undoubtedly lead to painful cases where a dying person’s wishes are not obliged, potential litigation ensues from families claiming they were not informed in good time of their loved one’s death in order to lodge an objection and, crucially, wider public trust in the NHS may be forfeited.

Presumed consent is illiberal and unnecessary and the ends do not justify the means – especially when there is a better way of ensuring we get more donor organs to save lives.

3 comments:

  1. Is it not ironic that it is no longer acceptable for union members to be conscripted automatically [presumed consent]into paying the political levy to the Labour Party. Anyone who disagreed in the past had to OPT OUT. Now that 'presumed consent' has been recognised as unacceptable it will be up to the individual to make a deliberate decision to OPT IN. This, at the same time as the Labour politicians in Wales are saying that the state automatically owns your body at death and anyone who disagrees must OPT OUT.
    The subject matter may be different but the principle is surely the same. Burke and Hare are alive and well and living in Wales.
    And will blood donation be the next on the agenda? If the hospitals need blood urgently will passers-by be rounded up by press- gangs and blood taken from them? After all, if the state can take your body when you die then why not take a few pints here and there when necessary when you are alive? If it saves lives then why not?
    What will be the next surprise launched on the unsuspecting public after body snatching and gay marriage?

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  2. Gay marriage was never introduced by Labour, and is still not its formal policy.

    I'd have to check the party breakdown on the body snatching vote in Wales.

    Kevin Meagher was a speaker at the recent Blue Labour conference.

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  3. It seems that 27 out of 30 Labour members voted in favour. None voted against or abstained. Three out of 14 Conservative voted for, and 8 against. Eight out of 10 Lib Dems voted in favour with none against. Five Plaid Cymru voted in favour with none against. Now that the Labour Party has disavowed the practice of presumed consent with regard to the political levy, perhaps their representatives in Wales will be ordered to reverse their support for the more serious practice of presumed consent for body snatching.

    I understand perfectly well that gay marriage was not introduced by Labour and is not its formal policy but this makes its position even more scandalous. Despite NO PARTY having this in any manifesto, Miliband is taking full advantage of Cameron's deceit of the electorate by supporting his bill. And not only supporting this shabby and opportunistic piece of legislation but putting pressure on party MPs to vote in favour, including your own MP, Pat Glass, who seems to be putting career advancement above all else. Where are Miliband's principles? He should have stated in parliament as soon as this bill was aired that it has no legitimacy with the electorate and on this principle alone his party would not be supporting it. If he had done so it would have fallen spectacularly by dint of the opposition in Cameron's own ranks. Miliband missed a golden opportunity, politically, to seriously embarrass the PM whose own party wishes to be rid of. Where Cameron is forceful and deceitful, Miliband is weak and indecisive. I wish that it were not so but the reality is there to see.

    Meagher's article is excellent but will it do any good? He talks about scandals involving clinicians abusing their power which have taken their toll in recent years, especially the child organ scandals when thousands of dead babies and children had their organs harvested – without parental consent. Abuse of power is not restricted only to clinicians; it is rampant among much of the leadership of this country in politics, business, religion, and even in the corridors of the BBC. It is a patronising arrogance that has been growing for the past 30 years and more. Tony Blair was a master at it, and now we have his star pupil, Cameron, abusing his power by pushing through his gay marriage bill without electoral consent. This was Miliband’s golden opportunity to restore principle and respect for parliament and population but he has failed miserably. Instead, he has meekly colluded in the deceit and contempt that Cameron has for the electorate and his own party. Where do we turn for honesty and leadership? Clegg? Farage? I don’t think so.

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