Every year I do a bit about organ donation. Hello twenty ten!.

Since my post last year WA has opened up the discussion regarding my long held belief that organ donation should be 'opt-out', instead of the current 'opt-in' due to the recent 'front page' news of heroin addict Claire Murray receiving funds from the government coffers for a second liver transplant. Unfortunately her life decisions wound up costing her her life and her family a valued member.

Please be respectful.

Unfortunately for people who are in need of transplants that through no fault of their own have been placed in a position of hoping for a miracle, stories like Claire Murray set their cause back ... truth be told. The general consensus amongst ignorants that only come across topics like this are via stories like Claire Murray.

"I'll never donate if they're going to a junkie!" was one comment I saw. It breaks your heart when we're losing SO MANY through various non-self administered diseases.

This is why I HAVE to do my bit.

http://www.cysticfibrosis.com/remember.cfm

I weep myself dry there. Look at the ages. My partner has Cystic Fibrosis and has had a double lung transplant. Without the selfless act involving many through a death of one my partner WOULD also be dead. She was critical when the donor gifted. She's not cured, but we have some life to share for just a while.

The answer isn't just 'opt-out', it's also bureaucracy. Please fix it, so others can experience what I have with my partner.

Please be a donor.

I am a registered 'organ donor', however I certainly wouldn't want my organs going to some junkie either.

In fact, to take it further, I don't think the public system should pay for anyone, with any illness, resulting from 'self induced' actions.

When we have situations where 'junkies' have anywhere up to ten medical staff in attendance, at any one time, while at times we have people dying in waiting rooms, or, we are out of staff and or beds, you know there is a problem.

I think I might 're-think' my position, unless we can have more say in where our organs may end up.

Do you know if one can nominate for such an exclusion?

Generosity to that degree shouldn't come with caveats mate. Organ donation of one body doesn't just help one person; it can help many. Sure, you might end up donating to a drinker - enjoy one or two rectub? - or a smoker, or to someone who's lived on fatty foods and didn't listen to their doctor, or a junkie, but in the end you AT LEAST donate a life change to around 10 people. You could save the lives of half a dozen people.

The other thing that irks me about stories such as Claire Murray is that she was refused a second chance which is why she wound up overseas. The issue regarding her is with the funding she received. It has NOTHING to do with Transplant Australia nor being an organ donor.

Surely everyone deserves a first chance?. What say you, smokers, drinkers, and those that don't keep themselves healthy?....

StG,
Fully support you and I support the concept of opt-out in relation to organ donation.

My late wife was two years on home dyalisis, which was tough, then had a kidney transplant which lasted 17 years, untill she died from a breast cancer. The kidney transplant was the best thing and transformed her life from a near invalid to a real proper functioning person. So I am very aware of the benefits of transplants.

Of course I am a donor and when I go they can have whatever bits are usefull. I will forever be indebted to my wifes donor.

I am a registered organ donor. If, when I go to sci-fi heaven, any of my organs are of any use to anyone is fine by me.

I agree an 'opt-out' system would be the best for all concerned.

As far as I'm concerned, after I'm dead my body will be nothing more than dead meat. If any bits are of potential use to anybody, they're welcome to them. How can it possibly matter to me, whether they're 'junkies', smokers, alcoholics or whatever?

I agree with idea of an 'opt-out' system for those who think otherwise.

While we have people waiting months, & even years, for simple, cost effictive treatments, I can see no justification for these hugely expensive treatments being given to a few.

Taking very large chunks of budget, & capacity to treat very few, is not a viable option for a system struggling to supply the simple, but critical requirement of the many.

Transplants should be on the user pay principal. Sticking hearts in old blokes, [like me] has no place in the public system, just because we can do it.

I have had seventy one years use of my organs but if someone wants something they are welcome.
Yes i am also a donor and I support the 'opt out' concept and yes, I believe in smaller Government too.
Will I ever give Sir Humphrey Appleby a serve!!

Banjo,

Thank you for your thoughts, and I'm sorry for your loss. It's interesting how potential donors and recipients don't really appreciate the emotion and gratitude involved in such a thing. The view from being on the receiving end of organ donation - via your partner - is humbling beyond what words - that I've found anyway - could describe.

Mine is seven years out from the double lung. In that time we met and she's experienced something that her sickness robbed from her previous to the transplant. If it wasn't for the donor and the family I would never have met her.

"Opt-out" is just another step on the road to totalitarianism.
The idea that the state decides what to do with your body unless you apply for an exemption is sinister.
The state does not own anybody's body.
And why shouldn't somebody, or their family, be able to decide who they want to donate their organs to.
Imagine the situation where a person's organs are used to prolong the life of the person who murdered the donor's child.
Stranger things have happened.
Should the brothers and sisters of the murdered child have to accept such a travesty?
What if a believer doesn't want their heart going to a pork-eating infidel?
Shouldn't we accept their faith-based or culturally-based wishes?

Sorry, I should have explained what opt-out means. It's fairly obvious you don't understand.

You still have the SAME choice as with opt-in. It's just that a LARGE percentage of the population who don't have issue with donation but haven't ticked the box purely because they haven't considered it and didn't wish to spend the time at the transport office before getting their licence. Once they got home they forgot about it. Opt-out forces you to make that choice. 'Opt-out' merely means, 'option out'. It DOESN'T mean, 'you have no choice other than donate and we're gonna take ur baibeez....". *eyes roll*

If for any reason - either faith, ignorance, general ickiness, or whatever - you CAN and should state that you don't wish to donate. End of story....but PERSONALLY I reckon you shouldn't be able to get organs, either.

...and it would only be default when you turn 18, or get your drivers licence, or whatever. You have to be an legal adult to make legally adult decisions...

Wish I had a buck for every person I met lined up at the transplant clinics who weren't donors.

Hasbeen,
I have seen many young kids, teens and young adults get Kidney transplants and I expect it is the same for other transplants. Why should they be on a user pays scheme? What about someone who is drunk or badly hurts himself being stupid, should he be on a user pays scheme as well? Should we continue costly treatment for a person with AIDS, who was silly enough to have unprotected sex?
Why would you single out transplant patients for a user pays scheme?

On age, where do you propose the cut off is to not do anymore medical procedures if it is expensive. Is it retirement age? I myself have decided that if I have a major organ problems or get cancer I would not have chemo or radiation treatment, but that is my decission. I reckon that i have had a reasonable innings and let nature take its course, helped with ample doses of scotch, rum and whatever took my fancy. Other old codgers may take a different view and that is their decission also. I know of quite a few blokes older than me who still have usefull lives and contribute much.

I don't know if you are being 'devils advocate' or that you have not given the matter much thought. Either way I disagree with you.

Yes Banjo, I've thought about it, deeply. Here is why I have my opinion.

I have watched a a young neighbour family on the verge of loosing their home. She had a gallstone. She was carted off to hospital 4 times in 18 months, with a blockage. She was sent home without an operation 3 times, "because they could not fit her in".

It was only when she had been too sick to work for months, with the family in big financial trouble, thay they did the op. She spent a long tine in hospital, recovering, rather than the couple of days it would have been, if fixed ealier, before she was so sick. Bad management all round.

Another young family have just had to borrow $9,000 to have a bunion operation. She is a shop girl, who must stand all day. She was told it would be at least 3 years wait for surgery in the public system.

As she could not stand the pain for that long, they will now have to be a bit lucky to keep their house, after paying for the op, as well as having 10 weeks off work.

Perhaps it's because I don't personally know anyone waiting for a transplant, that I feel as I do. I do see many quite comfortable elderly people getting transplants, & young needy families suffering with huge waiting times. I would rather see 100 smaller, but still critical treatments done, than the odd huge treatment.

I don't claim to be "right" about this, but that's the way I see it. As time goes on, & medical costs become even greater, we will have to make some hard decisions about how much we spend on everyone, no matter how much we wish it was not necessary.

I believe we must spend the limited budget where it is most cost effective. Fixing my young neighbours bunion, or gallstone, is probably more cost effective, than doing a transplant on an old fart

Hasbeen,

It's not just 'been there, done that' old people who have transplants. In fact, that's the minority.

In my initial post I gave a link to the CF community that is a list 30 pages long that have died on waiting transplant lists. That list only goes back to 2006. have a look at the ages of those people that have died. Barely one over 30.

My mother has a rare condition called, scleroderma, this disease effects, as its name suggests, skin - including the skin of internal organs. The effects of this disease varies from person to person, in my mother's case it is slowly clogging her lungs, day by day, month by month. At no stage has it been suggested that she go on the waiting list for a new set of lungs - she and her doctors agree that she is too old, in fact she would refuse such a donation even if offered. She has lived a good long life coping with an ex-vet alcoholic husband and raising two girls to adulthood by herself.

I will be giving up my home soon to stay with her in her final time - due to illness myself I can no longer afford the mortgage on my home, so will go care for my mother - it is the least I can do.

Those who would place caveats on organ donation or whose warped views that an opt-out system of organ donation is some kind of totalitarianism need to do some hard reflection on themselves.

Thank you StG for your eloquent explanation of the 'opt-out' system.

I read somewhere that most organs are taken from road accident victims and speed of obtaining consent is critical for the survival of required tissue.

If this is so, an 'opt in' system may not result in as many organs being taken where the consent of next of kin is still required. For starters, it may be difficult to contact next of kin and discussion of organ donation under those circumstances must await some recovery time for the person bereaved. The loss of time results in loss of organs.

A risk in an increasingly litigious Australia, where individual rights are always supposed to be superior to community benefit, is that an 'opt in' system could result in legal challenges where there could be any doubt about the dead person's intentions and the consent of his relatives. It only takes one successful case to produce a very large loss for a hospital and medical staff. Then there are the additional insurance costs for the whole health industry.

While I can see possible advantages in an 'opt in' system, it will not result in a windfall of suitable organs for the reasons outlined above and also because while out population is growing exponentially for Mr Rudd's unsustainable Big Australia (and the demand for organ transplants similarly increases), the number of terminal car accident victims is not keeping pace - and there are reasons for that, thank goodness.

I am by no means convinced that the 'large percentage of the population who don't have issue with donation didn't ticked the box (on the drivers licence) purely because they hadn't considered it and didn't wish to spend the time at the transport office before getting their licence'. There must be some reasons and objections - not simply laziness - that account for the difference between the number of people who agree with organ donation and the far lower number who eventually opt in.

contd...

contd..

I support 'opt out' and can easily make ethical arguments supporting it. However I do not support lazy, gutless politicians who sweep problems under the carpet and are unwilling to explain issues to the public and enter into direct consultation for consensus on a practical solution that identifies and treats all of the risks and objections.

Even if there was an 'opt out' system the vexed problem remains of ensuring there is no possibility of a later appeal from the next-of-kin, or significant others. Appeal is highly for members of some religions, for example those who would accept an organ but are implacably opposed to donation themselves. This is not intended to stir up an anti-religion debate, but saying that all opinion that could have a bearing on policy should be put onto the table and dealt with in advance.

Maybe too a new system could include preference in the queue for organ transplants for any person and his/her immediate family who is listed as a willing donor

Cornflower,

Yeah, it wasn't my intention to suggest that EVERY person who isn't a donor only aren't because of laziness. OBVIOUSLY many have consciously considered the question properly.

I SAID in my initial post that bureaucracy was part of it as well. I'd suggest it's most of the problem.

Severin,

You're doing it tough. I'm REAL sorry to hear. Carers are amongst the most unrecognised 'volunteers' around. I get you really don't have a choice, but do it willingly anyway. I'll be the same with my partner. All the best.

StG

Please don't take what I said personally because it certainly wasn't intended that way. Also, I applaud your initiative and forthrightness - would that more voters took your lead.

This para outlines is where I am coming from:
"I support 'opt out' and can easily make ethical arguments supporting it. However I do not support lazy, gutless politicians who sweep problems under the carpet and are unwilling to explain issues to the public and enter into direct consultation for consensus on a practical solution that identifies and treats all of the risks and objections."

There are very effective ways of directly consulting with the community and this is an ideal policy area to do it. However we need statesmen to be champions.

Winning 'opt in' as a policy is also a loss (winning the battle but losing the war) if enduring management and legal issues (SNAFU) are not surfaced, thrashed out with community help and community consensus obtained. Remember the insulation debacle, why risk a short-cut political compromise, thrashed out behind closed doors and with vested interests (who would not include consumers)?

The first sentence of my last para says "Winning 'opt in' as a policy...", whereas it should read "Winning 'opt out' as a policy...'.

StG

Thank you.

What is really odd is that I haven't even discussed my decision with my friends yet - found myself telling a mostly anonymous internet audience instead. Well it is a start

StG and Severin, I too am sorry for what your loved ones are going through. I have nursed people with these diseases over the years, and found the family and carers go through nearly as much angst as the patients. CF is an especially tragic disease in that it takes people so young.

All I can suggest is that when the time comes, you check out all the help in your community that is available for patients and carers. It is out there if you look hard enough.

Organ donation should definitely be on an 'opt-out' system as far as I am concerned. The medical community spend far too much precious time trying to find, then convince shattered next-of-kins to give consent to take the deceased person's organs- quickly!

Deciding on matters like organ donation when you are recently bereaved is not an easy matter. If the deceased person did not opt to keep their organs previously, then how much easier it would be for all concerned to just go ahead and harvest the organs in a timely manner.

suzeonline, "If the deceased person did not opt to keep their organs previously, then how much easier it would be for all concerned to just go ahead and harvest the organs in a timely manner."

If anything 'opt out' makes it harder and hospitals would certainly want to protect their assets from legal suits from relatives and next-of-kin who might disagree. In any event the tissue degrades while the next of kin is found and contacted. Possible donors are often road accident victims and it takes time to identify, find and get approval from the next of kin.

That is why it is critical that the next-of-kin informed consent issue is resolved - which can be done in advance and possible instead of further change. Who knows, just discussing and fixing that could increase the availability of organs suitable for transplant through wiping out the main cause of delay that ruins tissue.

Cornflower, I would have hoped that if a person did not put himself or herself on a 'do not take my organs' register, then it will be assumed that he/she agrees to have their organs harvested?

Finding the relatives will still be imperative of course, so they can say their goodbyes etc, but I had hoped that getting any 'consent' from them would not be needed if we went ahead with the 'opt-out' legislation.

In the event that relatives could not be found in a timely manner, to allow the safe and effective harvest of the patient's organs, then I believe that hospitals should be allowed to go ahead anyway, as it was the patient's wishes.

Maybe until such legislation can become law, people could legally add their wishes to be an organ donor to the new 'living will' paperwork?

Is there any guarantee doctors dont know this information?

Do you people really want doctors aiming up for the parts of your body when you're still alive and they're supposed to be working for you not eyeing up your organs?

'Oh, that medicine might make him live a little longer, but I'd rather have his liver still intact for that person down the hall.'

There's lots of ethical questions arising when doctors know what parts of your body can be used for others who they believe might make better use of them.

Also what about if they decide 'this selfish pr1ck's not donating', and robbing them of useful spare parts? How will they react? Spend all their time on the nicer patients?

Houellebecq

You are right, there are ethical questions and scenarios to be gone into. I wonder if 'opt out' might impede eventual acceptance of voluntary euthanasia, for instance.

That is why I would much rather it if government could one day develop enough courage to enter into direct consultation with the public rather than fear it might be opening a Pandora's Box by being more democratic. The are good models of direct consultation available.

I don't mean the conferencing of notables and professional advocates as has happened recently, that would be the opposite of what I suggest.

I don't believe that the possible opt-out legislation would be a bad thing at all.

If the medical fraternity were considering the lifesaving benefits to many sick people, the Parliament would be surely adding safeguards to the laws by suggesting that perhaps some Doctors who were not employed by the same health facilities as either the potential donor or the potential recipient, would be able to check the decisions about to be made.

If these Doctors were uninvolved with the patients in question, then they could be more objective in the decision about the donors and recipients.

Anyone who was paranoid or cynical enough to feel there was some sort of conspiracy to harvest organs from 'bad' people and give them to 'good' people, could always 'opt out' from donating organs.

Personally, I feel they should also be barred from receiving any lifesaving organs either though.
It's only fair isn't it?

Consent is required from next-of-kin, that is a problem at present and for 'opt out', even more of a problem for 'opt out' where doubt remains as to whether the person wanted to donate or not and the relatives will be asked that question.

That is an example of a management problem in the present system that if deal with, could immediately improve the number and survivability of donor organs from the 1% of patients who are suitable for organ donation. 'Opt out' does not increase that 1%, well not unless you adopt the Python approach:

http://www.youtube.com/watch?v=aclS1pGHp8o

It would be far smarter, more productive and there would be far quicker results from lobbying government to identify and fix the management problems in the present system.
- in any event such problems would have to be overcome for the alternative system.