Thursday 22 April 2010

Misleading?

The Christchurch Press this morning quotes Janice Langlands from Organ Donation New Zealand as saying that LifeSharers and Andy Tookey are "misleading" New Zealanders:
A Christchurch man is "misleading" people into thinking they can skip waiting lists for organs, experts say.

Andy Tookey set up LifeSharers three years ago to help improve New Zealand's organ donation rate, which is among the lowest in the Western world.

Members sign a contract saying they want their organs to go to LifeSharers members first.

The organisation was founded in the United States as a non-profit national network of organ donors.

Tookey says there is a shortage of organs and it is not fair to give them to non-donors when there are donors who also need organs.

Organ Donation New Zealand donor co-ordinator Janice Langlands said the LifeSharers model could not work because it did not have the transplant service's support.

"It's unfortunate, because he's misleading the public," Langlands said.

"Allocation of organs should go on medical emergency, and not disadvantage those who haven't signed up to be LifeSharers."

New Zealand Liver Transplant Unit clinical director Professor Stephen Munn said most organ donation organisations around the world had decided that no-one should be able to decide who their organs went to, unless it was to a family member. "The problem is that the assignment of organs to a particular category of people makes it very difficult because families could start saying, `I only want my organs to go to people who are Catholic or white'," he said.
Aha. So Jonah Lomu's kidney came from a family member then? Or is the particular category of "rugby players" more protected than "organ donors"?

First, neither Andy nor LifeSharers are misleading anybody. Unless the Organ service starts blackballing transplants to members, then members are no worse off by joining; and, should the doctors agree to respect donor wishes, then your chances improve by joining. If you're at worst no worse off and at best a bit better off, then it's not misleading to say you're overall better off.

Second, I've never seen Andy say anywhere that joining lets folks skip waiting lists. LifeSharers is far more marketed towards potential donors by encouraging them that their organs are more likely to go to organ donors; moreover, LifeSharers puts an explicit waiting period for new members before they become eligible for receipt to give folks a strong incentive to sign up while they're healthy.

Third, Munn brings up the old "Oh, racists may insist on donating to racists; we all hate racists, why do you want to make life easier for racists?" Red herring (see here). First, the service could always independently disallow racist bequests. Second, we have no evidence that directed donation elsewhere leads to problems with racist bequests. Third, even if it did, a racist who'd be unwilling to donate unless it could go to a member of his preferred race still brings a new organ into the system if he makes his repugnantly constrained bequest. Fourth, allowing racist bequests is categorically different from allowing LifeSharers requests: every person who joins LifeSharers gives every other person in the country a stronger incentive to be an organ donor and to join - for free - LifeSharers. You don't get that effect with racist donation.

Push comes to shove, the Organ Donor Service will eventually have to choose between respecting a donor's wish to donate to other donors via LifeSharers, or confront a grieving family telling them that they refuse to respect their loved one's wishes, that they'd sooner let the organs be buried, and subsequently face a lawsuit. I hope that I don't get to be the test case.

Lloyd Cohen's declaration is looking better all the time....

I really hope this is the last bit of angry for the day....

6 comments:

  1. I sent the following letter to the editor of the Christchurch Press in response to their story:

    The primary goal of any organ donation system should be to save as many lives as possible.

    By offering their organs first to other organ donors, members of LifeSharers New Zealand are helping increase the supply of organs by creating an incentive for non-donors to become donors. With more donors there will be fewer people dying waiting for organ transplants. Andy Tookey is doing wonderful work spreading the word about an excellent way to save lives.

    In a 2009 survey in the United States conducted on behalf of Donate Life America, 29% of those surveyed said they'd be more likely to sign up to donate their organs if it would increase their chances of getting an organ if they needed one. New Zealanders would probably answer in a similar way.

    People who criticize LifeSharers should answer a simple question: Why should New Zealand retain its current organ donation system when giving organs first to organ donors will save more lives?

    David J. Undis
    Executive Director
    LifeSharers - USA

    ReplyDelete
  2. I also sent a letter to the paper as below:

    Liver transplant surgeon Stephen Munn is wrong when he compares the policy of LifeSharers to people saying they may want their organs to go to 'Catholics or white people only.'

    It is illegal to discriminate on the grounds of sex, race or religion.

    LifeSharers is legal and does not discriminate against anybody. Rather than discriminate it welcomes everybody and offers an incentive to be a donor.

    The organ donor service refuse to be on board because a LifeSharers member would still expect an organ from the general pool.

    Those who refuse to be donors also expect an organ if they ever need one.

    Who is really skipping the waiting list?

    Without the goodwill of donors there would be no transplants. LifeSharers aims to increase the donor pool so that even those who refuse to be donors themselves have a better chance of getting a transplant.

    Rangi

    ReplyDelete
  3. Of course LifeSharers members are more likely to donate to the general pool due to the chances of them being compatible with another member.

    This is better than the 'other' group who won't contribute to the pool at all but will happily take from it.

    So good point from commenter above.

    This thing about misleading...Is it not them misleading? for instance if the government introduced an organ donor register would it be misleading of the government because the organ donor service would not look at the register?

    Is the current driving licence system misleading? The donor service don't check the licence - if it is misleading, why did they tell Parliament they wanted to keep this misleading system in place as opposed to an alternative?

    And just to be 'very' misleading, in the next paragraph they state:

    "Allocation of organs should go on medical emergency..." Well we know that is misleading because time on the waiting list is a factor also. An alcoholic or drug user with renal failure is also a 'medical emergency' but will they be top of the list if an organ becomes available? They add their own social/moral values into the mix...

    I would also point out that the LifeSharers website was up several months before they moved the goalposts...

    I note Stephen Munn says "most countries around the world." Don't allow it (Good job he was thinking of Israel, he is a big fan of Iran practices.) Unless it's to a family member. (Hopefully that family member is a white catholic or under Dr. Munns' terms they'd be buggered!)

    They told Parliament that if an organ donor register was introduced they would not use it.

    They told Parliament that if the law was changed to donors wishes could not be vetoed they would ignore it.

    Have now said you can't decide what to do with your own organs even though you're offering them for free.

    As we have the lowest organ donor rate in the developed world. it appears they 'veto' every attempt to improve things. (Unless it's their idea.)

    I wonder if Parliament made this into law would they refuse to do it?

    Would be good if they would make clear their position on this and wether or not they still think that they are above the law?

    I wonder how much the organ donor rate would go up if a small group of people were sent out to pasture and another group of Israeli doctors were flown in?

    (Doctors who are prepared to follow the law and follow the wishes and directions of the majority of New Zealander's?)

    Attn: Colmar Brunton, there's a job for you!

    ReplyDelete
  4. As medical technology advances, demand for organs will always exceed supply multifold.

    Isn't the aim of everybody concerned with organ donation to raise donor rates in NZ?

    It seems every faction is fighting against each other- transplant recipient lobbyists, Lifesharers, organ free-marketeers versus ethicists, medical fraternity, Maori, constitutional and human rights advocates.

    Wouldn't it be better if all this fighting energy was aimed in one direction to promote organ donation along a path acceptable to everyone (which may involve some compromise to all parties).

    For goodness sake, get it together so as not to confuse the ignorant, apathetic, ambivalent masses. And yes, some of them are selfish as well.

    There should be only one clear simple message —

    Donating your organs if you die is a GOOD thing to do.
    Talk to your family.

    In 2005, there was an ODNZ (Dr Streat) initiative to take an organ donation education programme around secondary schools. This was slammed down by the school principals concerned with parental, religious and cultural consent. Why?

    ReplyDelete
  5. As early as 2002 in my petition to Parliament I pushed for an education programme in schools.

    I even produced to the Select Committee educational packs from schools that do it overseas.

    I was not aware that it had been rejected. Can you supply more information and I will follow up on it with the 'appropriate' people.

    ReplyDelete
  6. @Dave: your letter was in the Saturday paper!

    @Tupeke: I'm more than happy to cheer for any move that improves current policy. A free market is my ideal policy because I think it would save most lives. But there are lots of other policies that also would save lives (albeit fewer) that I'd also happily support: payment of funeral expenses for donors, limiting family veto, binding donor registries, donor education programmes, payment of reasonable expenses for living donors, moving donors up the queue a bit either via directed donation at LifeSharers or via policy (Israel) - I'd cheer for any of these. I'd cheer loudest for the ones that would save most lives though.

    ReplyDelete