From Sunday 21 February to Sunday 28 February 2010 is Australian Organ Donor Awareness Week (AODAW), which is the largest public awareness campaign in Australia promoting organ and tissue donation for transplantation. People of all ages can be organ and tissue donors.
It was over 40 years ago that the first heart transplant was performed in South Africa, and the following year the first heart transplant in Australia was performed at St Vincent’s Hospital here in Sydney. Then in 1990 that same hospital was the first in Australia to perform a single lung transplant. The Heart and Lung Unit at St Vincent’s now performs between 50 and 60 transplants every year and has performed over 1,000 transplants since 1984. Worldwide organ transplants have become a widely practiced specialty with thousands of people receiving organs from dying and dead donors.
The rates of organ donation differ widely between countries. In the European Union, for instance, the lowest rate is in Greece at 6 per million and the highest is in Spain at 34 per million. Interestingly, studies have shown that, in countries where consent is required most people do not give their consent, and in countries where dissent is required most people do not dissent. In other words, people do not bother to express their wishes either way. As a result many donor campaigns are now promoting family communication of one’s stand on organ donation, whatever that stand is, to bring the issue to the fore. In Australia we can indicate on our state-issued driver’s license that we are willing to donate our organs at death.
Because of the need for a steady supply of organs to transplant, why doesn’t Australia change the law to ‘assumed consent’ which means people would have to purposely ‘opt out’ not to be automatically included? One reason is that there is no guarantee this approach would work, as even the countries with assumed consent can have low levels of organ donation, such as Sweden with 15 per million or Israel at 8 per million; because the families of the deceased can still withhold their consent.
Faith in your country’s medical system is also very important for the success of organ donation. If patients already fear or distrust the medical system, as many do, it will not help that their organs might be taken without their having knowingly ‘opted in’. Many vulnerable or hapless people, such as non-English speakers and those less literate in general, would not know how to go about ‘opting out’.
Few modern bioethicists disagree on the moral status of organ donation and most of the world’s major religions support donation as a charitable act of great benefit to the community but the philosophical and ethical issues are still profound and controversial.
Consider this: in surveys conducted among living donors postoperatively, and in the period of 5 years following the procedure, many have expressed an ‘extreme regret’ and adamantly declared that given the chance to repeat the procedure they would not. Many participants also reported a worsening of economic conditions after the procedure. There is, in fact, a widespread pattern of physical and financial exploitation of living donors worldwide, which has been coined the ‘new cannibalism’ by medical anthropologist Nancy Scheper-Hughes of Organs Watch, an international group that monitors the sale of human organs.
Then there is the awkward fact that donors do not get to choose the recipients of their organs. The policies regarding organ allocation between patients are controversial e.g. should life-saving livers be given without bias to alcoholics? Or is alcoholism a disease like any other disease and its sufferers should be treated just the same as those people who have been good stewards of their bodies? Or consider this: prisoners are not discriminated against as organ recipients in the USA, and are equally eligible along with the general population. In fact, prisoner status cannot even be considered a factor when determining suitability for transplant. But many potential donors may baulk at ‘giving the gift of life’ to someone who has cruelly caused suffering to or taken the lives of others.
The growing industry of transplantation is demanding extra funding for specialised training, specialists, and facilities to increase donation rates. But when we live with a medical system that does not even have enough nurses, general practitioners, or radiotherapists, surely the need for organ transplant specialists is of somewhat less priority? Should we as a society not focus our resources first on providing to everyone a foundation of basic healthcare?
Studies have shown that where organs cannot be bought or sold (such as in western countries) the quality and safety are high and the donors are few. And where organs can be bought and sold (such as in some Asian countries) there is an increase of donors but the supply is not as safe or as high in quality, because there is a financial incentive to disguise illness or other unfavourable information about the donors.
Different organs/tissues have different waiting times and success rates. The heart, lungs, liver, pancreas, kidneys, eyes, heart valves, skin, bones, bone marrow, connective tissues, middle ear, and blood vessels are the major organs and tissues that can be donated by a person. The urban myth when we were younger was that the worth of the human body was about 89 cents for its basic chemical components – but it is now worth thousands of dollars for each organ and tissue segment, adding up to about $220,000 US dollars at last estimate.
During the year 2007 there were 45,395 recorded road crashes in New South Wales and 435 people were killed. Some may ask why we shouldn’t use the bodies of accident victims for the organs that are not damaged, since they are transported to ER quickly and ready to be harvested? Wouldn’t that just be practical? Isn’t it just making use of natural resources that would otherwise go to waste? And, as it is the youngest drivers who are at the highest risk of crashing due to their inexperience, attitudes to driving and risk taking behaviour, that means most of the organs harvested would still be in very good shape. As hearts and lungs can only be preserved for 4 hours after removal, transplant decisions have to be made very quickly. The utilitarians ask why we should not make organ donation automatic for all people who die in hospital emergency rooms? The law as it stands now condemns many, some of them little children, to an unnecessary death, simply because of the shortage of willing donors while, as the British Medical Association puts it, “bodies are buried or cremated complete with organs that could have been used to save lives”. But who owns your organs, you or society? Is it possible that a compelling interest on the part of the state or society will eventually be made to overrule every individual’s right not to donate his or her organs?
It is generally assumed in the media that people who object to organ donation are simply being sentimental. The media present a worldview in which the dead body is an inanimate object, incapable of feeling. But not everyone believes that. Many people believe they were made whole in their mother’s womb by the hand of God, and they want to eventually meet their Maker in the best state possible; they might be old and missing a few teeth but otherwise whole. Other people believe it is the mark of civilisation to have respect for the remains of the human dead and object to their body being perceived as a commodity.
In Australia, on average 18 people die everyday because the organ they needed to live was unavailable i.e. in someone else’s body. All the major religions have accepted organ donation as a gift of life. Other religions, like those practiced by Roma Gypsies and various non-mainstream groups, are against organ transplantation, as they believe that each human cell is sacred and contains the blueprint for the whole of our being. Even the Jehovah’s Witnesses, who are against blood transfusions, will allow organ donation as long as the blood has been carefully drained from the organ before being transplanted.
Many of the dramatic stories in the press over the years about the recipient of a new organ suddenly changing their habits, and their food choices after receiving a new heart may be due to overactive imaginations, although scientists agree there are at least 70 documented cases of transplant patients having personality changes which reflect the characteristics of their donor. In one case, after receiving a new heart and lung the American woman developed a craving for beer, chicken nuggets and green peppers. She later learned that her donor was an 18-year-old male who had loved those things. What are the implications if it is true that transplanted organs may come with their own memories and food preferences? If medical science cannot adequately explain these occurrences perhaps it should have a serious rethink of what it is doing. And what are the implications for xenotransplantation, or cross-species transplants, where pig-to-human heart, lung and liver transplants are intended? Are we perhaps solving the organ shortage crisis only to be creating another crisis of unfathomable dimension? Intervening in processes our medical science does not fully understand seems unethical.
A number of recipients of donor organs report feeling ‘anticipatory survivor guilt’ while waiting for their donor to meet his or her untimely end, with ‘survival guilt’ being defined as the guilt that survivors feel when others have died. They knew their own life meant the sacrifice of someone else’s, and frequently they thought about the unknown person so often that a relationship arose in their minds. Others became obsessed, and after the surgery were intent on tracking down the families to make some contact and say thank you. The psychological effects of this new relationship have not been fully factored into the treatment decisions for those needing new organs despite studies showing that the psychosocial problems are adversely affecting the recipients’ quality of life.
Another issue to consider is the changing definitions and understanding of brain death over the years, with harvesting of organs commenced on people deemed to be brain dead. Last week the press reported that doctors are now able to communicate with a man thought to be in a vegetative state for 23 years but suddenly, with new technology, revealed to have been conscious the whole time . That man is extremely fortunate his family had not permitted organ removal surgery on him. But what if organ harvesting has been carried out on other conscious people who doctors mistakenly diagnosed as brain dead? That is too horrible to contemplate but a grave question to ask those who make such decisions. There cannot be any group of people more helpless and vulnerable than those thousands of people in hospitals around the world currently deemed to be brain dead who may nonetheless be conscious and aware of each passing moment. Bodies being harvested of their organs are not even given any pain relief, as it is not believed there is any awareness of pain. But where there is such uncertainly surely prudence is required?
The truth is that the demand for organs far outstrips supply and is ever increasing. In many countries a black market has arisen. In fact in recent years various incidents have been reported in the USA where funeral homes were selling black market body parts to ‘tissue recovery’ companies, including the 90-year-old journalist Alistair Cooke whose cancerous neck bones were recycled into some unsuspecting person paying for ‘medical-grade bone-grafts’. The entire story of the theft featured in a documentary aimed at educating the public about modern day ‘grave robbery’, and the perpetrators went to jail. Other incidents have shown cases at a California hospital of a patient’s death being hastened to secure an organ needed by another of the doctor’s patients. These appalling things are already happening. We need more stringent safeguards, not fewer. We need more sense of ownership of our bodies not less, and we should not be pressured to give them to other people.
People know that, human nature being what it is, in a medical emergency the surgeon may not do his or her best to save the life of a registered organ donor. The doctors might figure that helping one patient to see, another to a new liver, another to a new heart, another to a new pancreas will actually help more people than saving just that one life; it is the new math. Is this the kind of world we want to live in? As philosopher Hans Jonas once pointed out, people need to trust that their physician won’t be their executioner and that no legal definition will ever empower him or her to be so.
There are around 2000 Australians of all ages on the waiting lists for organs and tissue at any given time, and a number of them will die waiting. The Australian Organ Donor Register is Australia’s only national organ and tissue donor register.
The Donor Register will ensure that your consent to donating organs and/or tissue for transplantation can be verified by doctors at any time – 24 hours a day, seven days a week – from anywhere in Australia. They will send you a card to carry in your wallet showing that you are registered as a donor. Then, when you die, the information about your decision will be accessed from the Donor Register, and provided to the medical authorities and your family.
So the request to you during Australian Donor Awareness Week is to think through these controversial issues for yourself. Don’t just take anyone else’s word for it, think about what it means to you because one of these days you are going to have to make a choice. What may start out as a noble, voluntary gift by some can over time become expected from many, and then finally be made mandatory for all. We must be careful what we believe in and what we set into motion for it will have implications for personal autonomy. Surely the ‘first owners’ have the first claim to an organ, and the absolute right to decide whether to give it to someone else or not.
For more information or to register as a potential donor please go to:
http://www.medicareaustralia.gov.au/public/services/aodr/register.jsp
Researched and written by Leslie McCawley BS, MPH