Health

Organ donation: A fight to survive

Faranaaz Parker

With organ donations in SA dipping as low as two per million people many don't live long enough to find a suitable match, writes Faranaaz Parker.

In SA, where organ donations can dip as low as two per million people, people can wait years for an organ transplant. Many don't live long enough to find a suitable match. (AFP)

I am not a superstitious person but I’ve been putting off registering as an organ donor since I was a teenager because somehow I can’t escape the feeling that the minute I sign the papers I’m going to get hit by a bus.

It's hard to explain why – I can only guess that it has something to do with my reluctance to deal with questions of my own mortality – but I'm not alone. A number of my friends feel the same way.

"I share your fear that I will sign up 'just in time'," said one of my friends.

"People don't like facing their own mortality," said another.

If I died tomorrow, donating my organs could help give up to seven people a new lease on life; donating my soft tissue could improve the quality of life of up to 50 more people. People like Alice Vogt and Nuran Nordien.

When Vogt was a child, she was diagnosed with cystic fibrosis, a genetic disorder that causes mucous build-up in the lungs and results in difficulty breathing.

By the time she was 20, every day had become a fight to survive.

Waiting list
"Your life basically revolves around keeping yourself alive. I needed supplemental oxygen, which ties you to the house, because you need your oxygen concentrator. I had phsyio every day for half an hour at least, I had to take nebulisers twice a day – on bad days I would do it four times a day. It would take hours," she said.

At 22 she was told that her only hope was a lung transplant, and was referred to the waiting list.

In South Africa, where organ donations can dip as low as two per million people, people can wait years for an organ transplant. Many don't live long enough to find a suitable match.

Vogt was lucky. After eight months, she was told to fly from her home in Port Elizabeth to Johannesburg, where a donor had been found.

"After the surgery my surgeon told me that I had only a few weeks left to live," she said.

All she was told of the woman who gave her a new lease on life is that she was 20 years older than her.

"I'm just grateful to her and to her family because they made the final decision, and when they were grieving they were unselfish and did the right thing," she said.

Improving the quality of life
Some organ transplants are not about saving lives but about improving people's quality of life.

Civil engineer Nuran Nordien was 13 when she had her first cornea transplant. The second came two years later.

Nordien suffers from keratoconus, a degenerative condition that leads to vision loss over time.

"You never go blind. You just lose all the detail," she explained.

By the time Nordien was placed on the transplant list her vision was so bad that should barely see across a room.

Eventually the time came for her operation.

"With eye stuff you never realise what you're missing until it gets fixed. When I took the patch off after the transplant, I realised for the first time that I had wrinkles on my face," she said.

All Nordien knows of the people who donated their organs to her more than 20 years ago is that one was a young lady and the other an old man.

"I owe it to them. Without the transplants, I wouldn't have been able to be an engineer. I wouldn't have been able to do any of the things I do now," she said.

Only 8% registered organ donors
After qualifying as a civil engineer, Nordien worked in the Eastern Cape building dams and piping systems in rural areas. She later switched to transportation engineering and worked on transport integration for the World Cup. If you've driven through the elevated traffic circle near Green Point Stadium in Cape Town, you've made use of some of the work she helped conceptualise.

It seems like an obvious choice. But many people never even have consider organ donation. Out of 50-million South Africans, only 80 000 or so are registered organ donors.

And it's not just laypeople like myself who are organ absconders. A recent study of attitudes and beliefs on organ donation among medical students in Cape Town found that only 8% of the students were registered organ donors.

Meanwhile, there are about 4 300 adults and children awaiting solid organs like hearts, lungs and kidneys, and a further 30 000 in need of soft tissue organs like, skin, bone or tendons.

Yet in 2011 doctors carried out only 568 transplants.

Improving organ donor rates is a global problem, which many countries are battling to solve.

Presumed consent
Last year the UK's National Health Service began considering reforms that would require people to opt out of organ donation rather than to opt in.

The practice, known as presumed consent, is common in Europe and organ donation rates are much higher in countries where opt-out policies are in place.

As of this year, a new law geared towards increasing donor rates requires all Germans over the age of 16 to be asked to consider registering as a donor. In future, German health insurance companies will also be required to regularly put the question of organ donation to their members.

And in Israel, a recent law set up to boost organ donor registration rates, provides for donors who have been registered for at least three years to get priority on the organ transplant waiting list should they require an organ transplant. However, the ethics of the system has been criticised by some in the medical profession.

It's hard to say why people are so reluctant to register as organ donors. A lot has been said and written about cultural beliefs and their impact on people's decision to donate.

Samantha Volschenk, executive director of the Organ Donor Foundation, said many people who contact the organisation to discuss organ donation ask questions about how brain death works, about whether their bodies will be respected after they die or will be disfigured by the harvesting procedure. Some question whether organ donation aligns with their religion and, in the case of Muslims and Jews, whether they can still buried the day they die.

Like my bus theory, these fears are unfounded. Most major religions accept organ donation on the basis that it could save another person's life.

African traditional belief
More specifically to South Africa, questions have been raised about the role of African traditional belief in decisions on whether to donate one's organs.

Dr Nontando Hadebe, a lecturer in theology at St Augustine College and a Christian, said black South Africans are often hesitant about organ donation because in African traditional belief, the body is not seen as separate from the soul.

"In African cultures, you don't have this dichotomy between the body and the soul or spirit," she said. "Even as you die, you die as an integrated whole."

For some, giving up a part of yourself through organ donation means giving up a part of your whole being.

"Partly they feel maybe they won't be whole, or a part of them will be taken away, and partly because there's not enough information given within the framework of the belief system so people can begin to question [their beliefs about organ donation]," she said.

Hadebe said she believes more people could be reached if awareness programmes were geared at getting people to consider organ donation, in a language that highlights the bonds within families and communities as well as the continuity of life.

"It shouldn't just be something that's dropped there and left for people to figure out," she said.

Organ transplant coordinator Alexia Michaelides, said religion or culture are not the main factors that will determine whether a family opts to donate their loved one's organs.

'Issues of religion'
"Issues of religion or culture do come up but it plays a very small role in whether a family will consider organ donation," she said.

"The main factor is whether the person who's passed away has expressed a wish to be an organ donor."

Michaelides agreed that language is also a key factor.

Transplant coordinators are the medical specialist who do everything from coordinating transplant lists to discussing the possibility of organ donation with families, checking on the patient (the potential donor) and overseeing the harvesting and safe transport of an organ to its recipient.

Having a transplant coordinator who speaks an African language and understands African traditions would help when it comes to discussing organ donation with the family.

But this is made difficult by what Michaelides calls "a crisis" in recruiting transplant coordinators.

"That's our biggest problem," she said.

Because much of the job involves the clinical management of the donor, transplant coordinators must be intensive care trained nurses – a rare find in South Africa.

Emotionally demanding task
The role is emotionally demanding – transplant coordinators are the people who must approach a grieving family shortly after the death of their loved one, to ask if they would consider organ donation – and requires a lot of after hours and on call work.

Another factor is that there is sometimes a reluctance from medical practitioners to refer a patient who is brain dead to transplant coordinator because they feel the family may be distraught to deal with the question.

But Michaelides believes experience has shown just because a person is grieving openly, doesn't make them more distressed than someone who is very calm, she said.

"Some people are very calm and say 'yes', others are very calm and say 'no'. Some are calm and are selective about what organs they consent to," she said

"Some are not calm and they are just hysterically sobbing at the bedside, [yet] later they give you consent for every organ. You just never know, until you ask.

Michaelides points out that while South Africa does not have an organ donation rate in terms of the national population, there is a high consent rate among those who are asked to consider it.

"People are very giving and very kind," she said.

SA's organ donation issue
South Africa's organ donation problem, it seems, is more structural than doctrinal.

While the Organ Donation Foundation is working hard to raise awareness of the issue. In deep rural areas where there are no schools, no clinics and no roads, there is unlikely to be any discussion on the topic.

"If more people understood organ donation, I think more people would donate," said Volschenk.

But more importantly, organs can only be retrieved at certified transplant centres.

In contrast, Spain, which leads the world in organ donations, has a network of transplant coordinators that covers every hospital in the country – all 168 of them.

There are only 16 transplant centres in South Africa. All of them based in major cities; and more than half split between Johannesburg and Cape Town.

Consent to donating
So it's not particularly surprising that in Spain there are 35 organ donors per million people, compared to South Africa's two per million.

"The fact is, in South Africa we can promote organ donation and sign on millions of people as donors but if someone dies at a hospital that is not a transplant centre, where the doctors and nurses aren't trained in organ donation, then we can't get those organs," she said.

There is one more thing you should know about organ donation in South Africa – it doesn't matter whether you're a card-carrying member of the Organ Donor Foundation, if your next of kin do not consent to donating your organs, doctors may not retrieve them.

This makes it tricky for people whose views on organ donation differ from their family's. But it gives me a way to reconcile my desire to be a good Samaritan with my fear of the unknown. I still haven't signed those papers, but I've told my family that should anything ever happen to me, I would want to donate my organs.

If you would like to register as an organ donor visit odf.org.za or call 0800 22 66 11.

The Organ Donor Foundation is a non-profit organisation, which relies entirely on funding from the corporate and private sector. Funds raised go towards awareness and education initiatives.

RELIGIOUS PERSPECTIVES

Catholicism

  • Most major religions accept organ donation on the basis that it could save another person's life but prohibit the sale of organs for profit. Father Anthony Egan, a Roman Catholic priest, said organ donation has been largely accepted by Christian churches.In Catholicism, it's recognised that while bodily mutilation is wrong, mutilation for reason of preserving a person's total well-being is justified. When this principle of totality is applied to a context wider than a single person, organ donation became acceptable. "The Catholic Church is not affected by questions of the afterlife; quite realistically, we realise that the physical body decomposes after death while the soul moves on to higher things, and that the 'resurrection of the body', so far as we understand it, can only be understood as a completely renewed body," he said.

Judaism

  • "Judaism considers us to be the custodians of our bodies as well as our souls, both of which have been bequeathed to us by our creator. Therefore, we may not knowingly injure, damage or mutilate our bodies. However, if it were to save a life, this rule would stand aside to the greater responsibility of preserving life," said Rabbi Yossy Goldman, president of the South African Rabinnical Association.

Muslim

  • Among Muslim scholars, a fatwah, or religious ruling, by Shaykh Ali Farag, head of medical faculty at Al Azhar University, on the question of organ donation has been widely accepted. "The organs may be removed from the person either with consent prior to death or with the consent of the inheritor," according to the fatwa. However, there must be no doubt that the person is in fact dead, and not in a coma.

Bahá'í

  • There is no specific ruling on organ donation among the Bahá'í and the decision to donate is largely left to individuals. "The Bahá'í i perspective is that once you leave this world, you don't need your body any more. The body is just for this world," said Mlingane Poswayo, media liaison for the National Office of External Affairs of the Bahá'ís of South Africa.

Buddhists

  • Among Buddhists there is no one perspective on the matter – it is largely left up to individuals to decide whether to donate or not. "Buddhism is really about doing less harm, and doing more virtuous action – being kind and having wisdom – so organ donation, if it is done with the motivation to benefit others and lessen their suffering, can be a greatly beneficial, selfless and virtuous action," said Ezelle Theunissen, a member of the Kagyu lineage of Tibetan Buddhism in Cape Town.

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