There are 95 people waiting for an organ transplant that could save or transform their life. And, although there are an estimated 30,000 registered donors, Kristina Chetcuti finds that registration is not binding - the next of kin can overturn the dead person's wish.

With just about 10 deaths each year of persons fit enough for organ donation, people waiting for a transplant are living on prayers.

To make matters worse, in Malta, being an organ donor does not ensure your wish will be automatically carried out because the final decision lies with the next of kin who have to give their consent for organ removal.

Many donor card registrants - who number about 30,000 - have voiced their concern and even asked whether putting it in their will would ensure their wish is carried out.

Renal Unit transplant coordinator Tony Bugeja said there was no law governing organ transplantation in Malta.

"It is only a policy. Without a law the only way to move forward is by informed consent, which means ethically a signature of approval, following a briefing, has to be given before any procedure can take place."

This would have to be done by the closest relative and a will would make no difference.

The debate arose recently after a reader wrote to The Times expressing incredulity that the final decision lay with the next of kin despite the donor card.

The Transplant Support Group, the NGO where Mr Bugeja is a committee member, is lobbying for legislation. He insisted on the need for nationwide consultation before anything was introduced. "It is important society is consulted about the system, which would be best to adopt as, ultimately, this is a matter that concerns each and everyone."

Away from the island's shores, different countries adopt different systems. Malta follows the British method: the opt-in system where individuals are asked to register to be donors and require an informed consent.

Some countries, such as Scotland, strongly recommend the express wishes of the individual competently made before death should take priority over the wishes of surviving relatives.

Other countries follow the presumed consent system, where once the death is confirmed it is assumed donation will take place unless the person had registered an objection during his or her life.

Most countries that follow the presumed consent system, such as Italy, Sweden and Spain, offer a soft opt-out option, which still allows relatives to veto the retrieval of organs.

In the UK, waiting lists for transplants are long because demand far outstrips supply and, on average, one potential organ recipient dies every day while waiting for a donor. At present, about a third of families refuse to give consent for the use of organs, even in cases where the dead person was carrying a donor card.

This shortfall has led to calls for an opt-out system, known as presumed consent, where everybody would be assumed to be willing to donate organs unless they specifically state otherwise. In Spain, the leading country in transplant procurement management, three times more organs are available than in Britain thanks to this system. However, in the UK several patient groups are against this, arguing it is not up to the State to decide what becomes of the body once a person dies.

"We certainly do not want the UK scenario. We do not want society to go up in arms on something as sensitive as this. We cannot risk having people deciding not to donate their organs because they disagree with the legislation," Mr Bugeja said.

In truth, there was no urgency for legislation, according to Mr Bugeja, as there was no yawning gap between the number of people saying they would donate and those who actually did.

"Malta compares well to other EU countries. Although we have no statistics on the rate of organ donor refusals, very often the ITU staff and Transplant Support Group manage to make relatives understand the value of organ donation and obtain their signature. But we do need to improve the present system."

Mr Bugeja is the national key transplant coordinator, specialising in the task of explaining to grieving families how the organs of their loved ones could be used to save others.

"We work hard so donors' real wishes are respected. We explain to grieving relatives how more lives would be saved and they would be spared the experience of making the wrong decision at the worst time," he said.

At times, it was simply a matter of how the distressing situation was handled: "Most people agree to donate the organs of a dead relative for transplant when approached in the right way."

He added it was mostly difficult in cases where the deceased would have never discussed organ donation: "That throws the relatives off and leads to confusion. That's why the TSG campaigns encourage people to talk about it."

He said families who gave their consent to organ donation coped better in grieving and somehow found some meaning in their loss.

The chances of actually being a deceased, yet heart-beating, organ donor are very low. Just between 10 and 20 deaths per year offer the possibility of organ harvesting. These have to be brain deaths, usually from motor vehicle accidents, a fall from heights or brain haemorrhage. Plus, the patient would have to be on a ventilator at the hospital's Intensive Therapy Unit.

"Patients who die at home or in any other ward in hospital cannot be considered for cornea donation," Mr Bugeja explained.

He was quick to stress that no patient went to the ITU to be an organ donor: "Patients are taken there to be cured of their disease or because their critical condition would need them to be placed on a ventilator."

Life came first and foremost and every doctor's duty was to preserve this till the very end. The organ donation procedure was discussed only when the person had been certified brain dead.

Before a person is declared brain dead, two medical consultants - including a neurologist and both in no way connected to the process of transplantation - carry out 10 specific tests.

The tests are carried out twice to be absolutely certain there is "irreversible loss of the capacity to remain conscious combined with an irreversible loss of capacity to breathe spontaneously".

In Malta, only heart and kidney transplants are carried out. A team of Italian experts is brought over for the harvesting of other organs mainly the liver, lungs and pancreas. The cornea, although not an organ but a tissue that can be retrieved up to 24 hours after death, is also retrieved locally.

ITU patients who die of cancer or any transmissible illness are not normally considered for organ donation. The dead donor has to be free of serious disease and or any condition that could be transmitted to the recipient.

Some people are rejected on grounds of age but this depends very much on what organ is being transplanted and the donor's state of health.

Pending legislation, everything possible has to be done to encourage people to be donors. Donor cards may not be binding but perhaps what is most important is fostering goodwill and a greater understanding of the differences a transplant can make to the recipient.

Mr Bugeja had one recomm-endation to make: It was of utmost importance your closest relatives were aware of any decision you may take on organ donation.

Bonding relationship

EU guidelines lay down that donor and recipient information is to be kept confidential. This was the case in Malta up to the 1990s but Mr Bugeja said the authorities realised the donor relatives and recipients where meeting up anyway, without any support and guidelines, at times getting incorrect information. So it was decided the transplant coordinator would act as a middleman. If approached by either side, Mr Bugeja, with the help of TSG, holds the first official meeting. Before, both sides are informed of their rights.

"A meeting is only organised if both are willing. Within large countries keeping confidentiality is possible but Malta is too small to abide by the EU guidelines; we all know each other," he said.

According to Mr Bugeja, organ recipients thought a lot about their donor and there was a great bonding between the recipients and the relatives of the deceased donor.

The Church's stand

Archbishop Paul Cremona openly supports the cause for organ donations and he has been a registered donor since 1997. The Church, through its Media Centre, was responsible for the first successful campaign in favour of organ donations in the early 1990s.

According to research by Lawrence Stein from the University of Pittsburgh, religious people who want their bodies preserved for the afterlife are at times reluctant to be donors.

A Curia spokesman insisted that, while nothing should be done to denigrate the body, resurrection would be a glorified one, not a physical one. He said the clergy could play a big part in encouraging people to sign up for organ donor schemes by talking to their congregations about the issues involved.

For more information about donor cards log on to www.transplantsupport.com.mt.

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