Letters to the Editor of 'North & South'  Magazine in response to the April story on organ donation

Opt Out Not In

Andy Tookey's heart is definitely in the right place (To Give or Not to Give? March), as are those of many New Zealanders when it comes to organ donation, but our continual reliance on an "opt in" regime is, I suggest, doomed to forever mean a minimal -as opposed to a maximum -number of donated organs.

The present system is horribly flawed on at least three counts. One is that individuals have to make a conscious decision - when sound of body and sane of mind -to get themselves recorded on their driver licence as a donor, the second is that hospitals often fail to check the licence register to see if a patient is recorded as a donor, and the third is that relatives - in a state of stress and anxiety -can override the wishes of the individual.

What's needed is not an "opt in" system of organ donation, but an "opt out" system - as was mooted as recently as January by the British Medical Association. The BMA advocates doctors should be allowed to use organs unless expressly forbidden to do so by the individual from whom they wish to take them.

In other words, I am automatically a donor unless at some time in my life I have deliberately opted to have myself recorded on a "Non-Donor Register".

The body of any such "registered" individual is therefore a whole donor "no go" area, irrespective of the wishes of relatives. Conversely, the body of anyone not on a "Non-Donor Register" automatically becomes available for whatever organs doctors can harvest for reuse in other human beings.

But then I would go two steps further than the BMA. One would be that relatives could not, under any circumstances, countermand a doctor's desire to remove organs from someone who is not on the "Non-Donor Register.

And the second would be that if you have put yourself in the "Non-Donor Register" then you automatically become ineligible to be given any donor organs.

I rest my case.

TREVOR W.A. MORLEY
Wellington

Gift Of Life

As the mother of one of the 40 organ donors last year, I read the article on Andy Tookey with much interest. My son's organs were given as a gift of life. If there had been any element of compulsion, I think I would have refused, and would have subsequently deleted the "donor" label on my licence - cost or no cost.

As a family we have done our utmost to make our own experience an opportunity to educate others, many of whom had no idea that at the end of the day, having "donor" on your licence means nothing, and encouraging people to discuss the subject as a family, so that your own next of kin are aware of your feelings and you of theirs.

There is no relief in your grieving because you have agreed to organ donation. Grief does not come with a set of scales so that you can offset the pain. It is nice to know that somebody else (five people in my son's case) has the opportunity to have a better quality of life, but it does not ease the pain we are all feeling as a family.

The literature sent out by the organ donor coordinator, Janice Langlands, is helpful, and quite rightly concentrates on the recipients who tell their stories, but it also has some information on death and grieving in general.

Yes, there probably should be more information available to the general public, but make organ donation anything less than a gift and the already low donation rate will go even lower.

MARIE RUSSELL
Hastings

Informed Choice

The impression Dr Stephen Streat gives in To Give Or Not To Give? is that we're trying to demand or get legislation to "force" people to become donors. This is far from the truth. We have always advocated that it's a personal decision to be or not to be a donor.

What we want is for information put in the public domain so they can make an "informed choice", We'd prefer people not to be donors if that's still their choice after they know the facts, not because of some urban myth they've heard.

Apart ftom the work GiveLife does, there is no public awareness on the subject and most people get their impression of organ donation from the often wrongly portrayed scenes in movies and "soaps".

We're all for putting money into ICU doctor training as Dr Streat and others suggest, as that's where the donors are. But,
the Minister of Health, in reply to a recent parliamentary question admitted only 26 doctors attended these courses in four years.

You can lead the horse to the water...

Why only 26? In a survey of Australian and New Zealand intensivists one-third didn't believe it is their role to request organ donation. Although two-thirds believe the family should always be approached, another 52 out of 254 indicated that it was the intensivists' role to decide if families should be asked for organ donation.

It's our view that if doctors want to make intensive care their speciality then attending intensive care-related courses should be mandatory.

Putting money into ICU shouldn't mean no money goes into public education. Getting public support, as it's "their" organs we're  asking for is paramount to an improved system. No one item will work on its own;  they're all part of the same jigsaw puzzle.

Dr Streat claims, "It's a myth organ donation makes your grieving better." Since the article was published we've had many people who donated loved ones' organs contact us to say he is wrong and it did and does help them.

Dr Streat suggests that 'ideally'  he and others should run a new National Organ Donation agency. He also points out "my belief is pretty damn unique in transplant medicine".

It's our view that if this became the case we could not expect to move up the list from our present position of third lowest for the number of organ donors in the civilised world anytime soon...

ANDY TOOKEY
GiveLife NZ, Auckland

Talk It Over

Who wouldn't want a liver to give such an adorable little girl (The Vexed Question Of Organ Donation, March) a new life?

If Katie was my daughter, I'd be standing on the steps of Parliament campaigning for organ transplant to be compulsory. But the rest of us have to step back like Jenny Chamberlain and think the issue through.

How would we react if our still-pink, still-breathing child was wheeled away before our eyes - to have their liver removed by state decree? As a parent in this situation, I'd probably be screaming for my child to live, not thinking about donating her organs.

So what's the solution?

Could I comprehend my child was brain-dead, a child who looked like they would wake up in a moment and say, "What happened, Mum?"

I'm a registered organ-donor and I have talked with my adult children about organ transplant. I want them all to see the stark reality of Katie's situation. To talk it over, think about it.

My children have come to their own decisions about organ donation and I hope I would have the courage to respect their wishes if ever that awful decision had to be made.

Thank you Jenny Chamberlain for having the courage to tackle such an emotional issue. My prayer is that children like Katie will live as a result.

K.SIMPSON
Havelock North

Survival Of The Richest

Comments by [liver transplant surgeon] Stephen Munn in your March cover story were inaccurate. I'd like him to explain how he came to the sum of $10,000 a year to keep a kidney transplant patient alive.I've been a transplant patient for over 10 years and have realised that if you want quality of care you have to pay for it. I pay for up to 90 per cent of my drugs, because many of the immunosuppressants, blood pressure, statins etc are substandard and most cause distressing and unwanted side effects, especially for women. I go to one outpatient clinic a year and going to a GP is now a luxury.

The feel-good story he referred to, of the longest-lasting transplant, was performed on identical twins with one donating to the other, so both had the same genetic make-up requiting probably very little immuno-suppressants.

Realistically, the average kidney from a cadaver lasts 10 to 15 years, sometimes more, sometimes less depending on the condition or age of the kidney and the treatment you are given or can afford.

Transplants have now boiled down to survival of the richest!

H. REID
New Plymouth

The Only Good Thing

Eight years ago, I had a life-saving liver transplant. My life expectancy went from being measured in weeks to years.

This month, my mother suffered a severe brain haemorrhage. The staff at Dunedin Hospital ICU were fantastic. They did everything they could but the damage was too great. When it became clear she was not going to live, they sat us down as a family and talked about organ donation. Personally, I was so pleased they did.

For us this was an easy decision to make in light of my circumstances. We knew Mum wanted her organs donated to help someone the way I had been helped eight years ago. While it didn't help our grieving, we felt we had some small amount of control over what was going on. It was the only good thing to come out of the situation.

Once the decision had been made, great care was taken of Mum. At all times she was treated with respect and as much dignity as is possible in a situation like this. We were involved every step of the way.

As a person who has been full circle through the transplant process, I urge people who ticked the organ donation box on their driver's licence to discuss it with their families. They need to make their wishes clear.

I'm here now because someone donated their loved one's organs, and five other people have a new chance at life because we did that for Mum.

TANIA LINEHAM
Invercargill

Loved Ones Most Important

Jenny Chamberlain's March cover story effectively illustrated the different atritudes towards organ donation.

My brother Michael was in a car accident in January 1978. The day after the accident we were given the shocking news he was brain dead and were asked to consider donating Michael's kidneys for transplant. At the time I was a teenager and the thought of my beloved Mike leaving this world "not whole" was totally repugnant to me. However, my parents discussed and debated and eventually decided the only good thing to come ftom this tragedy was to give someone else's son and brother another chance at life.

Michael, at 23, had accumulated very little. He was a giver, having spent a year in the then New Hebrides with Volunteer Service Abroad. He was forever giving away possessions to someone else who "needed it more". Often he would arrive home at the farm with someone he'd met who needed rest, food and/or family love and care. So, yes, the decision was right for him and for us.

I have the word donor on my driver's licence and would like to think that when I die some of my bits might be useful to someone else. However, should my family find it abhorrent I want their wishes to be followed. My loved ones are the most important people in this decision and the I donation of my organs would have to fit with their beliefs, values and feelings.

Grieving wasn't made easier through our family's decision. We still feel the loss of our wonderful brother and wonder what his life would have been like. But sometimes I think of the man living with his kidney/s and that really is a consolation.

VIVIENNE NilSSON
Havelock North

In Andy's Shoes

I am saddened Andy Tookey is not getting much support from other New Zealanders, the hospital system or the New Zealand government.

Last year my brother - a doctor and father of two infant girls - was placed on dialysis and put on the kidney waiting list. My mother went through the tests to see if she was able to be a donor and the emotional turmoil of finding she was unsuitable because of aneurisms on her own kidneys.

At that point I put my hand up. Further blood tests showed I was not compatible with my brother. At this stage, my mother told the surgeon she was willing to take the risk and wished them to proceed.

On the day of the operation, I watched my mother first wheeled into theatre with my Dad holding her hand and trying to be strong. It was the first time I had ever seen my father cry. I then watched my brother being wheeled into surgery. Saying goodbye to my brother and my mother; knowing the risks, was probably one of the hardest things I have ever had to do. The memory will be ingrained forever.

My mother survived. My brother is doing well now and who knows, in another 17 years organ donation may not be required.

Organ donation saves lives. Two kidneys could save two people. Two lungs another two. A liver another life. Spleen, another life. One life could equally save six other people and give them a standard of living that they have not had before.

I have a friend whose mother passed away and donated her organs. The daughter met the recipient of some of her mother's organs. She said the response was over- whelming and now feels a very strong connection to the organ recipients.

Don't let Andy be the only person in the country fighting for the rights of every other New Zealander. My heart goes out to Andy and to his family and his courage in fighting a system that believes in saving lives but is also quick to take it away.

Put yourself into Andy's shoes. I've been there. I know.

SANDIE HUTCHINSON
Wellington

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