License article

Death for a life: inside the donor dilemma

Improving Australia's low organ donation rate could be more a question of logistics than lack of generosity.

Simone Gibson apologises for crying. She considers herself lucky because she is not about to die. ''Sometimes I feel I'm not worthy, and if someone's dying they should have it,'' says the 41-year-old mother of three - of the donor liver she hopes to receive within three years after last week having final medical assessments to join the transplant waiting list.

Gibson, from south Sydney's Oatley, has polycystic kidney disease, which is crowding her internal organs with fluid-filled cysts. ''My kidneys are the size of a small football and my liver comes down to my ovaries,'' she says.

Her abdomen is distended as if she were heavily pregnant and she cannot play active games with her children because a burst cyst is agonising and may put her in bed for days. Without transplants, the cysts will eventually crush her other organs. ''My back's curving. My hips hurt,'' she says. ''I'm not dying now, but I will.''

Four years after then prime minister Kevin Rudd told his health department to stop ''stuffing around'' and announced a $151 million package to transform Australia's woeful organ donation performance, Simone Gibson - who will also need donor kidneys in future - embodies a persisting dilemma: the number of organs available from people who have died has risen only marginally, while the need for them escalates.

The national donation rate is creeping up. In 2009, 247 people gave their organs after death - 11.3 for each million in the population; by 2011 that figure had risen to 337, 14.9 per million.

But this is still far short of ''the best organ donation and transplantation system in the world'' Rudd promised and well behind the kind of numbers that would give desperately sick patients a decent chance of timely transplantation. Spain achieves 34 donors per million of population and the US, France and Italy rate in the mid-20s.


No one really knows how many organ donors would be enough. As of last January, 1599 Australians were waiting for a solid organ transplant, with kidneys accounting for three-quarters of those.

But new analysis published today shows thousands of eligible recipients are missing in action from the waiting list - evidently because doctors think it is too cruel to raise hopes in people unlikely ever to receive a transplant.

Improved donor numbers therefore could unleash a whole new level of demand. Organ failure is also increasing as the population ages.

The economics clearly favour transplantation whenever it is possible. Kidney dialysis costs $83,000 a year for every patient.

A transplant and a year of follow-up treatment costs about $65,000, after which the annual cost of keeping a recipient healthy falls to just $11,000, according to federal government figures.

The Organ and Tissue Authority, charged with revitalising the Australian program says it wants to reach 23 to 25 donors per million of population within seven years.

But experts have begun to wonder whether this is possible, given differences in how Australian hospitals care for the dying.

''The authority has very high targets, and those targets are unrealistic without identifying more potential donors,'' says Aric Bendorf, a doctoral candidate at the University of Sydney's centre for values, ethics and the law in medicine.

Even in world-leading Spain, only 60 to 70 per cent of identified potential donors ultimately give organs, Bendorf says, after medical considerations, family objections and simple practicalities are taken into account. On that reckoning, ''even by the best case scenario we are only at about 20 [donors per million]''.

The real bottleneck, in Bendorf's assessment, is that relatively fewer Australians are treated in intensive care units right through to the point of brain death - when no activity can be detected in the brain stem - receiving ventilation that keeps their organs suffused with oxygen and able to be transplanted.

''We have this culturally accepted way of treatment withdrawal,'' Bendorf says. ''I'm not saying the practice is wrong, but it's different. There may be no ethical plus or minus [but] the end result is that we don't get the higher number of donors identified.''

The government, Bendorf says, is deluding the public by focusing on the more palatable message that family discussion is the key to increasing transplantation.

Professor Geoff Dobb is the director of critical care at the Royal Perth Hospital and immediate past chairman of the death and organ donation committee within the Australian and New Zealand Intensive Care Society.

He agrees Australian medical culture prefers to move people to palliative care when it becomes clear further treatment will not save their life, and says the law increasingly backs this position.

The growing use of advance care directives, or living wills, provides more impetus to abandon life support of the dying, Dobb says, because the documents oblige a legally appointed guardian to act in the patient's best interests.

In a horrendous but common enough scenario, life support may mean the person does not die but enters a persistent vegetative state, requiring hospital or nursing home care for weeks or months.

''It's very hard to argue that prolonging life when there is no hope of recovery - just for the purpose of perhaps allowing that person to become an organ donor - is in the best interests of that person,'' he says. ''I've been to Spain, and it's clear that there people who have had major strokes causing severe brain damage and loss of consciousness are treated in the hope that they become organ donors, not for their own benefit.''

As well, he says, Spain has twice the number of intensive care beds per capita as Australia; even if we wanted to put many more dying people on artificial support, we have limited capacity to do so. The society's own calculation five years ago, based on the proportion of intensive care patients who might be eligible to donate, suggested Australia might top out at about 20 donors per million - the same as Bendorf's conclusion.

''I think we really need to re-run that question and see what the answer is now,'' Dobb says.

Stroke and other brain haemorrhages already account for half of all organ donations and are more likely to occur in older people, suggesting a potentially growing pool of donors as the population ages. But improvements in care mean more patients are surviving and it is unclear how these factors balance out.

While organ donation has crept up nationally, NSW has fallen back from 88 donors in 2010 to 77 last year - or from 12.4 to 10.9 donors per million of population - the lowest rate in Australia.

Dr Robert Herkes recently took over as NSW medical director of the authority, which also goes by the friendlier name DonateLife. In July, Herkes plans to spill the 27 jobs funded through DonateLife across 22 NSW hospitals, intended to drive acceptance of organ donation from within the system. That program, operating in 77 hospitals Australia-wide, will consume $67 million over four years - the biggest element of the reform package.

Its results so far have been inconsistent; in NSW, hospitals' level of DonateLife staffing bears little relation to their donor performance.

''Senior doctors didn't apply for full-time jobs,'' Herkes says. The roles were given instead to ''junior doctors at the beginning of their career'' who lacked the necessary clout with hospital authorities.

Herkes will fractionate the positions, putting in a rotation of senior specialists for a day or two a week to ram home the donation agenda.

His thoughts are in line with a review commissioned by the federal government last year on progress since the funding infusion.

National improvements to date, it pointed out, had flowed largely from the efforts of a handful of large hospitals in Victoria and NSW, and future strategies should concentrate on specific hospitals with untapped potential.

This would ''not occur simply through the addition of resource but will also require … leadership provided at a national, jurisdictional and individual hospital level.''

Dr Jonathan Gillis, DonateLife's national medical director, says the Australian donor target can be achieved through more punctilious management, with no major policy change such as acceptance of older or sicker donors.

This year the goal is 16 donors per million, and new targets will be set annually, he says.

Audits show more than 90 per cent of potential donors are correctly recognised before death. In about 90 per cent of such cases, families are approached to consider donation and just over half agree to it.

By increasing the recognition and request rates to 100 per cent and the family consent rate to 75 per cent, Gillis believes Australia could bump organ donation up to European levels. ''Our consent rate's low,'' he says. Community surveys consistently show a large majority of people support organ donation in principle but this does not translate automatically into permission to take a loved one's organs, often because families do not know the wishes of the deceased.

''The mantra about talking to your family, it's actually very real,'' Gillis says.

Assistant Professor Holly Northam used to work as the organ and tissue donor co-ordinator for the ACT, approaching families, putting out alerts when a likely candidate was in hospital and wrangling surgical teams. Now she is at the University of Canberra, conducting Australia's first study of why families decline to donate a relative's organs.

She is discovering that an intention to donate can be quickly derailed amid the shock and distress of sudden death. ''The families I've interviewed initially wanted to donate and changed their minds,'' Northam says. One element is the ''perception of time''.

After agreeing to the procedure families may expect it to happen immediately; hours later, the tension of waiting may be just too much, and they withdraw consent.

Expediting organ retrieval and informing families clearly about the time-line may increase the chances of getting and keeping permission, Northam says.

But doctors may be deeply averse to such up-front disclosure, hating to feel they are coercing families or switching allegiance away from patients whose lives they have just been trying to save.

For two days last month, 90 intensive care doctors and nurses from across the state met in a Sydney hotel, training in how to conduct conversations with the families of the dying.

The program was designed by Gift of Life International, a Philadelphia based organisation that forthrightly promotes the cause of organ donation at the same time as supporting bereaved families, in a so-called ''dual advocacy'' that achieves donation rates of 43 per million in hospitals in Pennsylvania, New Jersey and Delaware.

''Ten years ago, we started moving away from neutrality,'' says Patti Mulvania, who conducted the training in Sydney and in other states.

The group's facilitators, summoned by hospitals when it becomes clear a dying patient may be a suitable donor, typically start by emphasising the opportunity to donate is rare - only 1 per cent to 2 per cent of deaths - and that some families find it consoling.

''Sometimes the conversation might go, 'You've told me your brother did so much for the community. Do you think he might have wished to donate?' '' Mulvania says. ''In this case, there is something I can offer them, when usually there's nothing.''

Nearly 20 years ago, Simone Gibson saw her father, David Ridoutt, from whom she inherited her condition, receive a kidney transplant following years of debilitation.

The family was able to pack up the room they had made into a home dialysis clinic and Ridoutt had another 15 healthy years before dying from a different cause.

''It was just beautiful to see him and my mum enjoy their lives again,'' Gibson says.

Her own life could be similarly transformed.

''I'd be able to see my children getting married if they choose that, hopefully see their lives with their own children … just to see them growing up.''

She wants people to reflect that, ''when you die, you don't need your body any more.

''Whatever your religious belief we all know that.''