Or­gan donor re­al­ity fall­ing short of hopes

More Aus­tralians than ever are reg­is­tered to do­nate or­gans, but the num­bers aren’t trans­lat­ing to more trans­plants, writes Lyn­nette Hoff­man

The Weekend Australian - Travel - - Career One -

TO busi­ness­man Marvin Weinman, it is sim­ple maths that doesn’t add up: nearly 5.5 mil­lion Aus­tralians are reg­is­tered to do­nate their or­gans and that fig­ure is climb­ing. So how is it that the over­all num­ber of donors per mil­lion Aus­tralians is lower now than it was 20 years ago — while other coun­tries, such as Spain and the US, have dou­bled num­bers?

Just over two years ago Weinman co-founded the lobby group Share­life in an ef­fort to rec­tify that dis­par­ity. Share­life has since hired com­pa­nies such as Bain and Com­pany and The Lead­ing Edge to re­search the world’s best prac­tice in or­gan do­na­tion and fig­ure out why Aus­tralia isn’t get­ting the same re­sults as over­seas.

As of Oc­to­ber this year 1855 Aus­tralians were on wait­ing lists for or­gan trans­plants. But in 2006 just 739 trans­plants were per­formed from a to­tal of 202 donors.

One of those wait­ing for a trans­plant is 60-year-old An­thony Par­relli, a Viet­nam vet­eran who four years ago was di­ag­nosed with pul­monary fi­bro­sis, a lung dis­ease of­ten found in min­ers or peo­ple ex­posed to as­bestos. Par­relli now de­pends on an oxy­gen ma­chine to keep him alive. It’s meant a huge loss of free­dom — he be­comes short of breath just from speak­ing, and ac­tiv­i­ties such as walk­ing up a flight of steps or cut­ting the grass are no longer pos­si­ble for him.

He’s had to quit his job as a fruit and veg­etable whole­saler and he’s no longer able to help with lo­cal soc­cer train­ing. The lim­i­ta­tions have left Par­relli bor­der­ing on de­pres­sion. He sees a trans­plant as an op­por­tu­nity to re­store some of the life he used to have.

‘‘ I don’t ex­pect to go run a marathon, but I’d like to just be able to go for a walk in the evening with my wife,’’ he says.

But wait­ing times for trans­plants can be lengthy, and the longer you wait the worse you are likely to fare, says as­so­ci­ate pro­fes­sor Al­lan Glanville, di­rec­tor of lung trans­plan­ta­tion at Syd­ney’s St Vin­cent’s Hospi­tal.

‘‘ Mor­tal­ity rates on trans­plant wait­ing lists are 15 to 20 per cent, so the lack of donors means that if you have a rapidly pro­gress­ing dis­ease you may not sur­vive to ob­tain a trans­plant,’’ Glanville says. ‘‘ You are also at higher risk of prob­lems such as nu­tri­tional de­fi­cien­cies and hos­pi­tal­based in­fec­tions.’’

The bulk of those on the wait­ing list, more than 1395 peo­ple, are wait­ing for kid­neys. A re­port by the NSW trans­plant ad­vi­sory com­mit­tee last year found that the av­er­age per­son on dial­y­sis waits more than seven years for a kid­ney trans­plant from a de­ceased donor. Peo­ple on dial­y­sis have a higher risk of high blood pres­sure, hard­en­ing of the ar­ter­ies, heart and bone dis­ease and other prob­lems, so sur­vival rates are bet­ter for those who get trans­plants.

Bear­ing all that in mind, groups such as Aus­tralians Do­nate, the peak body for or­gan and tis­sue do­na­tion, the Red Cross and oth­ers have launched com­mu­nity aware­ness cam­paigns urg­ing peo­ple to reg­is­ter to do­nate, and dis­cuss their de­ci­sion with their fam­ily.

The mes­sage to reg­is­ter is get­ting through, but Weinman ques­tions whether that is enough.

‘‘ Peo­ple think they tick the box and ev­ery­thing just hap­pens au­to­mat­i­cally, but that’s not the case,’’ Weinman says. ‘‘ Al­most 1 mil­lion reg­is­tra­tions have been added to the reg­is­ters be­tween 2002 and 2006, and yet in 2006 we had four fewer donors than in 2002.’’

Last year Aus­tralia had 9.8 donors for ev­ery mil­lion peo­ple — one of the low­est rates in the de­vel­oped world, ac­cord­ing to Aus­tralians Do­nate. Spain leads the world with a rate of 35.1 donors per mil­lion, while France has a rate of 22.2 dpm, and the US has 21.4.

While th­ese coun­tries have a greater num­ber than in Aus­tralia of deaths due to trauma such as road ac­ci­dents — which cre­ate the cir­cum­stances that can lead to do­nated or­gans be­com­ing avail­able — it isn’t any­where near enough to ex­plain the gap.

Au­dits of hos­pi­tals in sev­eral states, in­clud­ing

Vic­to­rian hos­pi­tals pub­lished in the Med­i­cal Jour­nal of Aus­tralia last year, have found two key prob­lems: not all po­ten­tial donors are be­ing iden­ti­fied, so a sig­nif­i­cant num­ber of fam­i­lies don’t even get asked at all; and re­fusal rates of fam­i­lies are higher than in other coun­tries.

Given that only about 1 per cent of all peo­ple die in a way that will al­low for do­na­tion, turn­ing those num­bers around is par­tic­u­larly im­por­tant.

The Vic­to­rian au­dit found that out of 280 po­ten­tial or­gan donors, only 220 re­quests for or­gan do­na­tion had been made. Con­sent rates ranged from 53 per cent to 65 per cent, de­pend­ing on how broad the def­i­ni­tion of or­gan donor was. In Spain, on the other hand, con­sent rate is re­port­edly around 85 per cent ( MJA 2006;185(5):250-254).

Leg­is­la­tion dif­fers from coun­try to coun­try. Spain op­er­ates un­der what is known as a ‘‘ soft opt-out’’ con­sent sys­tem: the law as­sumes you agree to do­nate un­less you say oth­er­wise, but fam­i­lies are still con­sulted and given the op­por­tu­nity to refuse, even if the per­son has never stated their op­po­si­tion.

How sig­nif­i­cant those sorts of leg­isla­tive poli­cies are to Spain’s higher rates is un­cer­tain. A Tas­ma­nian par­lia­men­tary com­mit­tee is cur­rently re­view­ing opt-out laws, but most ex­perts and ad­vo­cates push­ing for im­proved donor rates are fo­cus­ing on other fac­tors, such as how fam­i­lies are ap­proached.

The Vic­to­rian study found that fam­i­lies were more likely to refuse con­sent when they were ap­proached by ju­nior doc­tors, rather than spe­cial­ists. Con­sent rates rise when the doc­tor talk­ing to the fam­ily is knowl­edge­able about and sup­port­ive of or­gan do­na­tion.

Other coun­tries such as Spain have sep­a­rate specif­i­cally trained spe­cial­ists to dis­cuss do­na­tion with the fam­i­lies. But in Aus­tralia the same doc­tor re­spon­si­ble for treat­ing the pa­tient may be given the task of talk­ing to the dis­traught fam­ily. Many have re­ceived lit­tle or no train­ing and have min­i­mal ex­pe­ri­ence in dis­cussing such is­sues with fam­i­lies.

Of course there are hor­ror sto­ries, such as fam­i­lies be­ing ap­proached be­fore they even get to the bed­side, Weinman says. Fam­i­lies might not have a solid un­der­stand­ing of what it means to be brain-dead, ei­ther, he says — a con­fronting con­cept if their loved one still ap­pears to be alive.

The au­dits also show big dif­fer­ences in prac­tices and out­comes from hospi­tal to hospi­tal, and from state to state.

In its cam­paign for change, Share­life has called for mea­sures such as a na­tional trans­plant cen­tre and spe­cial­ist donor co-or­di­nat­ing doc­tors. It’s not alone. Jeremy Chap­man, chair­man of the Na­tional Clin­i­cal Task­force for Or­gan and Tis­sue Do­na­tion, says the task­force will be mak­ing some sim­i­lar rec­om­men­da­tions in its re­port to the health min­is­ters due out in the first half of next year.

The re­port will make a case for a more cen­tralised na­tional approach and fo­cused pub­lic aware­ness cam­paign, among other rec­om­men­da­tions yet to be an­nounced.

Proof of what’s pos­si­ble is al­ready be­com­ing ap­par­ent. About 18 months ago 22 hos­pi­tals across the coun­try joined forces to form the Na­tional Or­gan Donor Col­lab­o­ra­tive, a state and fed­er­ally funded pro­gram mod­elled af­ter a sim­i­lar pro­gram in Amer­ica that sus­tained a 20 per cent in­crease in donors over 30 months.

The col­lab­o­ra­tive uses best-prac­tice meth­ods such as hav­ing ‘‘ des­ig­nated re­questors’’ to speak with fam­i­lies, and train­ing staff to learn the clin­i­cal trig­gers that sig­nify a pa­tient might be head­ing to­ward brain death, so fewer po­ten­tial donors are over­looked. Dur­ing the first 12 months of the col­lab­o­ra­tive 60 per cent of the to­tal num­ber of or­gan donors came from hos­pi­tals in the col­lab­o­ra­tive, and the num­ber of donors in those hos­pi­tals in­creased by more than 32 per cent from the pre­vi­ous year. Six more hos­pi­tals have since joined the col­lab­o­ra­tive.

‘‘ There’s no doubt we can im­prove, but there’s not one sin­gle thing that will fix ev­ery­thing. It will take lots of things,’’ Chap­man says. For more in­for­ma­tion about or­gan and tis­sue do­na­tion call 1800 777 203 or

Pic­ture: Vanessa Hunter

In­ca­pac­i­tated: An­thony Par­relli, await­ing a lung trans­plant, longs for mo­bil­ity

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