Wednesday, September 22, 2010

Can't give them away with a pound of tea

I've been trying intermittently to become an official organ donor for nigh on twenty years. Anyone who watched the 7.30 Report last night won't be surprised to hear how difficult and frustrating this has been. Twenty years ago some of my organs might have been worth something, but I doubt it now, although I bet my lungs are in better shape after nearly 21 years off the nicotine.

But apparently now you really can do it online. That is, if you're prepared to register in order to use their online services and wait while they post you your password by snail mail. Which might entail ringing them up to make sure the postal address they have for you is current.

Also, whoever organised that segment managed to time the running of it so that it coincided with a period of maintenance at the Medicare site.

But if you're still interested after all that, the website is here.

Apparently Australia has an unusually low number of organ donors, but my guess is because it's been so hard to register as one. Every time I filled in a card for my wallet or opted to have 'Organ Donor' put on my driver's licence, someone would immediately assure me that it didn't mean a thing. My family has discussed this kind of stuff many times and we are all in furious agreement about the virtues of organ donation, but that decision is one burden I would like them not to have to carry if it came down to it. Hence the online registration.

But I'm wondering if there are other reasons. So by way of novelty I'm going to use Blogger's poll gadget to actually do something useful and get some information on reasons. Do feel free to play.


This old world is a new world said...


Lots of other possibilities.

- Not in favour of messing with human mortality (philosophical/ethical objection that is not necessarily religious)

- Profound suspicion of medical profession and the process of organ collection (i.e. organs are most useful when they're harvested before you're fully dead)

- Great respect for integrity of body and soul.

- it's a bit like IVF: just because they *can* do it medically doesn't mean you *should*.

- resistance to universalising normalising tendency in the matter (the argument one *should* have to opt in rather than opt out)

None of this, let me say loudly, is to say I have a firm view on the matter myself. I'm actually a waverer. But I have been part of lots of discussions, and I've come to see how complicated it is.

Mindy said...

I'm already planning on being an organ donor, but haven't as yet actually done it. If one of my kids or my husband needed a kidney then sure. Once I have no further use for them I'm happy to give them away. I like to think that if I had to make the choice for one of my children I'd be able to do it, to save the life of someone else's child, but then again that's a decision that I hope I never have to make.

Penthe said...

Other - ie I would be one officially if I could ever figure out how to do it and at the same time recognise (thinking of Stephanie's point about the whole not-quite-dead-yet thing) that some kind of relative is probably going to have to make a decision anyway. But it has certainly been discussed widely in our family, and we have all indicated an intention to be organ donors whenever appropriate (ie - after we are mostly dead).

Kerryn Goldsworthy said...

Stephanie, heh. Yes, the poll gadget isn't designed to accommodate either subtlety or an infinite number of options. Particularly in the matter of moral/philosophical beliefs I probably should have said that instead of 'religion' (NB that phrase was not meant to be disparaging, BTW!) but 'religion' is shorter.

And that's an interesting point about the normalising of 'should'. IVF is fundamentally a different beast in that it benefits nobody except those brave people who put themselves through it (and frankly I'm far more suspicious of the medical profession, and the likes of Big Pharma, in the case of IVF than in that of organ donation); I think the stronger comparison is with blood donation. But as someone who firmly believes people should leave other people alone and not try to make them do stuff or stop doing stuff unless there's an obvious case for intervention, I agree about not putting the pressure on.

Toni said...

I also carry the donor card in my purse, but once worked with a man who considered this little card a veritable death sentence. His reasoning was: what doctor worth her salt would work hard to save one life (the prospective donor) when failure would mean saving the lives of up to 8 others, and the sight of 2 more? Fear is a powerful motivator, even when the cause seems so obviously right.

Bernice said...

Am a registered donor, but I also have enduring medical power of attorney (reciprocally) with one of my sisters is the least mad. So someone sensible knows:
1. do not resuscitate
2. do not place on bypass or ventilator
3. pull out the plug ASAP (assuming the first 2 have been 'overlooked')

Unlike my now rather long dead mother, I have yet to pay for my future funeral. Might wait til I'm over 60 for that.

Kerryn Goldsworthy said...

Some of these comments are quite startling to me, in the degree of fear-of-doctors that they reveal. My only fear of doctors is (a) being looked up and down scornfully told disapprovingly that I need to lose weight, as though that were something I'd never even noticed, much less tried to do (and as though it were easy; I feel like saying to them 'Yes, and you should write a book'), and (b) that they will not act on something I tell them I'm worried about -- I've had a couple of GPs who've been inclined to do nothing, and still remember with great fondness the bloke I went to after months of terrifying headaches about which my then-GP was languid, on the rare occasions when I could actually get in to see him -- the new bloke briskly eliminated depression as a cause, prescribed good drugs as a short-term help, and sent me for a CT scan. In the end it was a physio, not a doctor, who made the connection with an old and fairly serious neck injury.

Of course one does not wish to be naive about the medical profession, but given the Hippocratic Oath and all, I'm always really startled by the deep-seated fear I often see expressed that doctors might be eager, for whatever reason, to kill you.

Tatyana said...

I'm generally in favour of organ donation.

I'm not too troubled by the the 'not fully dead' argument, as I don't think it would be an issue in a large hospital in metropolitan Melbourne. A person would be brain-dead (and the testing of this is quite convincing, regardless of the body's reflexes), or, alternatively, cardiac arrest would be established first (which gets around problems of establishing brain death, if this is a concern).

I'm very strongly against any institutionalised pressures on family members to donate.

With regard to 'not messing with human mortality', it's an interesting one. I see organ donation as a supplement to other life-saving interventions that we now take for granted. (I'd be dead if the miracles of modern medicine had not saved me during child birth. That's one example.)

In support of organ donation, I can think of one notable female writer and academic from Melbourne who had a liver transplant, and continues to write today.

I can see how people would be turned off by the idea. It's quite invasive.

I think many find the idea of organ donation confronting because they find the notion of the 'disturbance' of the body unacceptable. The idea of letting the body 'rest' undisturbed is culturally deeply seated, and I suspect this might be a major turn-off. Interference and disturbance of the recently deceased person really disrupts our ancient senses at a profoundly vulnerable time.

I had a discussion with my partner once about how I would feel if my organs went to some person I would ordinarily dislike. Would I feel a bit peeved?
Do I want to donate only to a 'nice person'?

These are interesting questions too.

I think I'd be happy to donate my organs. It's a worthy cause, but it's interesting that I'm still hesitating to formally activate that intention.

I watched the same 7:30 Report, and thought at the time that I would reconsider the issue ...

This is an interesting discussion.

JahTeh said...

The doctors worked 12 hours to save my son because he had no brain damage but it wasn't enough to save his body. He was too ill to live not ill enough to die, it took a month for organ failure to be advanced enough to turn off life support. The only things that could be used were his corneas. The doctors never rushed us from the room after he died but the machines were quietly removed. The dialysis machine was urgently needed elsewhere. His rare blood group had used up too much of the hospital's supply. So many things were used during that month to make his suffering less, perhaps better used elsewhere but that was the last month I had with him even in the induced coma. If not for those 12 hours every organ would have been donated because he had made it clear to all of us that that is what he wanted. I carry my donor card all the time and my family knows my wishes.

Kerryn Goldsworthy said...

JahTeh, how terrible for you. I'm so sorry.

Peter S said...

What Penthe said.

I am impressed by the number of poll voters who are already organ donors - your blog has a very wide reach!

This old world is a new world said...

Are you a donor if you haven't actually made a donation yet? Isn't that Pav's point?

Kerryn Goldsworthy said...

Stephanie, you are ascribing to me a higher degree of wit, albeit of the Galgenhumor kind, than I do in fact possess.

But I know what Peter S meant. And I'm now ruminating on just how skewed this sort of poll can be in terms of actually using the results as data to prove anything -- obvs the people who have ticked boxes here are going to be those more likely to play at all. One must shudder -- even more than one has already done, I mean -- at the way the online newspaper sites run 'polls' that construct matters of fact as matters of opinion, eg 'Was Lindy Chamberlain guilty? Vote now!' It's really insidious: it encourages people to conflate opinion and fact (and there's more evidence every day that they are doing so more and more), and it pretends to be reliable evidence of stuff.

Anonymous said...

No one here as lazy as I am then. I actually tried to do it online a few months ago, because I saw some menetion of it and thought "that'd be easy".

So I filled in the online thing and thought it was done, only to get some letter in the post asking me to sign something and return it. So, annoyed, I just chucked it out.

Years ago there was some appeal for blood of my type. I had never given blood but looked up the blood bank address - it was a nearby hospital - and drove down to find it was only open three days a week. Went back on one of those days and couldn't park within cooee, so have never given blood either.

Yes, I certainly should try a bit harder, but these days if you can't make things convenient for people you won't get much response.

Kerryn Goldsworthy said...

You're making me feel guilty about the blood thing, Anon. I've donated blood on and off since I was seventeen (which was a bloody long time ago, I can tell you), but over the last few years the combination of the four-page form you have to fill in every time you go and the rule about not using whole blood if you've taken analgesia in the last 72 hours (which these days I have very rarely not) and the fact that some of the staff are downright snippy and grumpy and the fact that half the time I go through the elaborate preliminaries and waiting around only to be told that my haemoglobin's too low and the parking difficulty thingy and the time it all takes adds up to one big soul-crushing Too Hard basket.

I don't expect any of these things to be Iss-yews with organ donation, though.

Ann ODyne said...

When I renewed my Drivers Licence the donor question was part of it.
Of course any more-needy person can have any organ I've got. Some days, to be frank if I may, I am content to donate them before drawing my last breath.
YES re the damn blood bank making it difficult. I donate regularly and enjoy the pages of questions - "Have you had sex with a meat worker?"
"Have you been to Queensland this year?" etc, but really, some of the staff are the pits. Volunteers (yes folks, volunteers, seem to be more pleasant.

I go because I like to think about the Tony Hancock Blood Donor classic. "where's me cuppa tea then?"

Shelley said...
This comment has been removed by the author.
Shelley said...

My choice is to have my odds and ends donated should I die in fit state etc. I have the little card and have informed my family though I don't really trust my mother to honour my wishes. I'm really not fussed on what happens to my body when my brain ceases to work and if someone can make use, well, why not?

I'm not entirely sure that I would choose to prolong my own life through organ donation though. I had a cousin who eked out an extra year or two after a lung transplant and she was very ill and bitter afterwards. It rather made me wonder if it was worth having such surgery.

Russell (formerly Anon) said...

Very strange coincidence since it was months ago that I did the online thing ..... but, I have arrived home to find in the mail a letter including my bright blue Australian Organ Donor Register card.

I think this is a sign. I will psych myself up to make another attempt at blood donation.

Kerryn Goldsworthy said...

Oh, that is scary.

I've been looking at my whinge up there about donating blood and thinking how pathetic, you should go back there tomorrow and roll up your sleeve.

Mary Bennet said...

The blood bank DOES make it hard. They spend too much money on advertisitng and call centres getting new customers but not enough on wages or actual customer service training or even a computer system that remembers what you told them last time about your medical history.

I've wasted hours trying to speak to one of their medical advisers in advance of showing up to see if I was eligible rather than have ANOTHER wasted trip.

And "appointment" is just the chance to wait.

But until I work out how to fix these things (we probably need a revolution or coup or a lot more agitating than I could manage), I go as often as I can and try not to get too snippy with the minimum wage interviewee struggling to look in the medical dictionary.

Oh and I said I was a donor but now realise I'm not a "real" one so thanks for the tip about the website.

Stephen L said...

I ticked other because I'm part way between the "too much faffing about" and "I'm already a donor". I tried to get registered, was shocked at how hard it was, and was told that anyway it was dependent on what your family decided whether you had signed up or not. So I told my parents that they were absolutely to donate any organs I had of value should I go before them.

But I still reel at how hard they make it every time I think about it.

I'm also staggered at those who believe the doctors would let someone die because they're a donor - it requires a view of doctors that completely fails to tally with any I've met, or indeed any person. The only people I know who are that callous are complete psycopaths who would off you given the chance for your jewelry, but wouldn't go across the street to help someone else.

lucytartan said...

I've very much in the OTHER!! category too because like Stephanie I am quite troubled by the fact that organs are taken before the body is dead. The body is warm, breathing, it looks alive - it is alive; I don't think I'm ready to accept that 'brain death' is the same as 'death'. Of course this is an entirely personal matter and I admire people who are able to think about it differently.

I agree that it's a *bit* like IVF, actually, in that the availability of the technology shouldn't translate to pressure to use it. Where there is no pressure, I don't see a problem. But there *is* some mild pressure to sign up to the donor registry.

I think Shelley's point about the not wholly clear benefits of receiving an organ transplant is also worth considering.

Emily said...

I've signed as a potential donor and my family are aware of my wishes. In the way we usually look at organ donation there are probably none that would be useable, but in considering skin as an organ (which it is) I realised I have lots of it, all in wonderful condition for my age (as people keep telling me). I'm more than happy for my skin to be harvested for use with burn patients.

I'm not sure that the question of organ donation can really be argued one way or the other - it seems to me that either you will or you won't, and nobody has to justify why or why not.

d said...

The last time I attempted to give blood the Red Cross spurned it because I'd owned up to shooting up some speed 40 years ago. Once. With no subsequent or consequent ill-effects. (I'm disgustingly healthy for an overweight 60 year old.) They don't make it as easy as they did before they asked so many questions ...

I've made it clear to my sons (and it's on my driver's license) that I'd like to be recycled if there's anything worth salvaging.

Kerryn Goldsworthy said...

D -- (I wonder if you're who I think you might be) -- it's one of the ironies of the organ-donation thing that people seem more likely to want to do it as they get older ... and their organs get less and less useful.

Ms Tartan, yes, I take the point absolutely about the whole 'you must do this because the technology exists' thing -- I suppose I'm focused more on the whole altruism aspect, but then, if one feels coerced then it isn't altruism is it. There's a fantastic book about blood donation somewhere (can't remember title, The Gift?) that argues that blood donation is the one truly altruistic form of gift. Can't say I agree with that argument completely but it is a fascinating read.

My views on this subject have been sharpened by reading Inga Clendinnen's Tiger Eye, which I think is what Tatyana was referring to upthread. Clendinnen is particularly good on the moral anguish of waiting for the call that informs you of the viable and matching liver that you must have if you are not to die very soon, and knowing that the call that will save your life means that someone else has died, probably prematurely and violently.

Tatyana said...

Yes, I was thinking of Inga Clendinnen's Tiger's Eye.

I'm inspired to leave another comment, after talking about this with friends, one of whom is a hospital physician.

Apparently, organ donation is one of the most complex questions in medicine, and examples of these local discussions can be found in the Medical Journal of Australia (MJA); the articles reflect some of the concerns raised on this thread.

I'm fascinated by the fact that Spain has one of the highest rates of organ donations in the world. They also have the laws that support it, with the 'opt out', rather than the 'opt in' policy (which is, ultimately, possible with some sort of community consensus).

By contrast, family's wishes can override the patient's 'registered donor' status here.

Organ donation is always an individual inclination, but it's interesting to compare the differences in community attitudes between countries.

I find it less convincing to compare organ donation to blood donation, because in most instances it involves the donor's death.

I can see why it would be easier to think of donation as one gets older. Equally, like Mindy, I wouldn't hesitate to donate to my own children, but, I think, I would find it incredibly difficult to give consent the other way around (too difficult to contemplate).

I was told, however, that the idea of organ donation can sometimes offer comfort to a family, a feeling that some good can follow from a tragic situation.

Perhaps this is where the notion of altruism really becomes apparent.

As has already been mentioned, receiving an organ to prolong life is a complex business, fraught with, as I see it, conflicting ethical questions, unlike receiving blood, a renewable substance. I don't think I'd really consider being a recipient.

Inga Clendinnen's example is also fascinating from that point of view.

Kerryn Goldsworthy said...

Yes, I didn't mean to make a direct comparison between blood donation and organ donation, just to say that there are similarities, just as there are other similarities with IVF.

Another thing to consider is that those of us working in or with literary or para-literary or other artforms, which one way or another I think most of the people who come here are, have a deeply ingrained habit of metaphorical thinking. 'It comes from the heart.' 'It's in the blood.' 'What's your gut feeling?'Are you blind?' Etc. What many of these metaphors do is imbue the concept of selfhood very deeply with notions of the body. There are connections between this and (or so I think) the fact that Australia as a secular and materialist country has, en masse, an unexamined sense that the body in some uncomplicated way is the self, and that swapping parts has in common with those two great taboos, cannibalism and incest, the physical blurring of the boundaries of identity.

lucytartan said...

Spain has high rates of organ transplantation for a couple of reasons independent of presumed consent - which isn't unique to Spain: they've invested properly in the necessary infrastructure, and they've got specialist transplant units in all their hospitals, and they use organs taken from cadavers which are heart-dead as well as brain-dead ones.

There's also supply to meet demand in Sweden, where I understand the culture of socialism shapes how people view their bodies (ie not so much as their own personal property as sort of asset of the State.) And in Japan there is almost no organ donation except of kidneys among relatives.

iODyne said...

re altruism and motivation: my blood bank account was opened for the very selfish motive of wanting to know, without expense, if I had healthy blood, as I was very close to a person I did not trust, and god knows where else he had been.

Also, being a vegetarian, it is comforting to have a 3-month haemoglobin-level test which always seems to be near the top of the scale.
Blood bank would notify seriously quickly if the blood indicated any health issue. My initial donation was in the city which is home to the Mars confectionery factory and they had a promotion where massive amounts of product were offered to donors ( I might get in a car with a strange man if he had a lot of really good chocolate).
South Melbourne blood bank offers milkshakes and hot food and used to get good donations from Art College students nearby at the NGV.

Trying to deflect the Saturday doorknockers one time, I mentioned my 14 donations at the BB and they immediately produced their special leaflet about why I should not.
OTOH let's hear from parents of a child saved by a few litres of finest A+

I consider it to be Paying Forward as well.

Tatyana said...

It’s an interesting comment about Spain, and particularly Sweden, lucytartan.

One could argue that Spain’s laws, as well as their infrastructure, make organ donation statistically more likely to happen; these two factors are complementary. Although, I’m not sure the suggestion that every hospital in Spain has an organ transplant unit is factually sustainable.

It’s fascinating to speculate why the supply meets the demand in countries such as Sweden, and framing it in terms of differing attitudes to one’s body vs the state would make interesting reading. Having grown up in one such country, I’m a bit reluctant to accept that citizens in ‘socialist’ societies are more likely to see their bodies as properties of the State. I tend to always see a big matter of coercion being part of that argument. I’m more inclined to think that this would be partially linked to secularism and ruthless practicality in relation to the questions of death and ‘recycling’. None of these ideas are supported by any reading, though, they’re just assumptions.

On the question of the methods of organ harvesting, sourcing organs after brain as well heart death occurs here too, which is why Australian academic medical literature is useful in clarifying the mechanics of how and when organ donation occurs, as is finding out how death is diagnosed prior to organ donation, who diagnoses it, and who is most motivated to achieve a donation ‘outcome’ [think ICU physicians, it seems], and what sort of state the patient is in prior to ‘harvesting’.

Japan is a complex case, and it is possible that one tiny factor contributing to the resistance to organ donation is the fact that Shintoism opposes it, and there must be many other cultural and instiutional reasons too.

I’m very much interested in the notion of literary work training the mind to think metaphorically. Of course, having thought about blood donation in a more general sense after posting the previous comment, I can see that it is a highly valid comparison, the exchange of bodily matters, the fluid’s life-saving ability, the complex questions of altruism, which could be looked at from many theoretical and philosophical view points … IVF is indeed related, even the grief and sense of loss associated with it are broadly comparable, and, I’m thinking, abortion would also compare well with the ‘not fully dead’ arguments, particularly in light of the political discussions on this matter in the US, given that such claims are sometimes coloured by religious and ideological motives...

iODyne said...

re 'One could argue that Spain’s laws, as well as their infrastructure, make organ donation statistically more likely to happen'

alpha-male bullfighters who do not survive goring would be a source ...

David Irving (no relation) said...

Dunno if you guessed correctly or not PC. I hit return a bit early when putting my name in, hence "d".

The funny (sort of) thing is that the Red Cross has had heaps of my supposedly contaminated blood from the days before anyone thought to ask all those questions.