Despite a desperate need for transplant organs, and some focus on encouraging people to sign up as donors, confusing law and gaps in policy mean few organs actually make it into South Africa’s transplant system.
In 2021, about 4 700 people in South Africa were awaiting organ transplants, but with donor organs coming from just two out of every million people, demand far outstrips supply, often resulting in numerous, tragic, loss of lives.
In 2012, write Christina Pitt and Linda Pretorius for Bhekisisa, Cape Town’s Jenna Lowe (18) could barely walk a few steps without collapsing and running out of breath.
What was initially thought to be asthma was a type of blood pressure problem called pulmonary arterial hypertension, which stops oxygen-carrying blood from getting delivered to the rest of the body.
It is a rare, incurable disease, but a drug called epoprostenol can give a patient some reprieve, relaxing the blood vessels in the lungs, making blood flow easier, and putting less strain on the heart to pump out enough oxygen-rich blood.
However, this drug wasn’t available in South Africa then. Lowe always had to have an oxygen tank close by and it became so hard for her to move around that she had to get a small scooter to attend classes at the University of Cape Town.
When her family managed to get her epoprostenol on a compassionate care basis in 2014, breathing got easier – but life didn’t. The medicine had to be pumped from a small portable device beside her bed so it could flow directly into the heart uninterrupted 24 hours a day.
She needed new lungs, and a double lung transplant was her best chance of getting back her life.
But with only seven lung transplants having been done in South Africa in 2013, Lowe’s odds of getting new organs were slim.
In October 2014, Lowe started an online campaign called Get Me to 21, inviting all South Africans to her 21st birthday party on 28 October – on the condition they register as organ donors.
Laws of consent
The National Health Act says from the age of 16 anyone can make it clear their organs have to be donated by writing it into their will or, with two witnesses present, writing a note and signing it, or simply telling someone it’s their wish.
However, a medical law expert at the University of South Africa, Magda Slabbert, said: “The conditions in the Act are meaningless,” because the rules it sets out are not practical.”
For example, for a will to be binding, it must be validated by the Master of the High Court. This can take many days, which, in the case of organ donation can be too long – once the machines have been stopped, a heart should best be transplanted within two hours, while kidneys can stay viable for up to 12.
It’s also not a good idea to keep someone alive artificially – on a ventilator – for too long after their body has shut down already, because the natural processes that kick in after brain death damage organs, so organs must be harvested fairly quickly.
Further, says Slabbert, “signing a document expressing your wishes in the presence of two witnesses makes it a living will, which is not legally recognised in South Africa”.
A living will tells someone’s family only how they’d like their medical affairs to be handled after they die, but the family can override this document because it can’t be challenged in court.
And because there’s no central database of such documents, neither a transplant team nor a patient’s next-of-kin can look up a living will and its conditions.
Verbally agreeing that your organs can be donated is also controversial, as it may be difficult to prove you ever said so.
This means the only way to get permission for taking someone’s organs for donation is by asking the deceased patient’s family, regardless of whether they’re registered organ donors, Slabbert said.
Registering as an organ donor is not legally binding; the same applies to having a sticker on your driver’s licence or an organ donation card in your wallet.
However, the Organ Donation Foundation’s registration form still serves a purpose, said executive director of the non-profit, Samantha Nicholls, as it creates awareness and a record of people’s wishes to be donors.
Why so few donors?
In South Africa, donor organs came from fewer than two out of every million people in 2017 – among the lowest donation rates in the world.
In Brazil, for example, organs could successfully be given to a recipient from about 16 people per million. In Spain, noted for having the best legal system for managing donations, almost 47 people per million were actual donors.
In a report from a 2019 workshop co-hosted by the South African Transplantation Society (Sats) and the International Society of Organ Donation and Procurement, experts said having so few actual donations is partly because people’s families don’t agree to it and partly because doctors aren’t referring patients for the process.
When someone has been declared brain dead, a specialist nurse in charge of the organ donation process at the hospital must be told there’s a chance of harvesting organs from the body. (The nurse is called a transplant co-ordinator.)
They must then ask the patient’s family for permission.
But it’s a difficult decision for families, especially when they’re facing the loss of a loved one.
A 2020 study from the Western Cape showed that in the private sector, only about half of the families who were asked to donate their loved one’s organs agreed. In the public sector even fewer families – about a quarter – were prepared to carry out these wishes.
Reasons ranged from reluctance to make a decision on behalf of someone else to religious and cultural beliefs.
The Sats report notes that, on average, five patients were referred for possible donation per month the year before their survey, meaning, on average, only 60 donors got into the transplant chain that year.
In some countries, like Britain and Canada, it’s compulsory for doctors to refer patients for organ donation in the event of brain or circulatory death.
But not in South Africa; in fact, hospitals without transplant programmes have no obligation to refer patients for organ donation.
There are only 21 hospitals in the country with transplant programmes (11 at state hospitals and 10 in the private sector), and only 26 trained transplant co-ordinators. Where these roles don’t exist, nurses or junior doctors – without the specific background – have to step in.
David Thomson, a transplant surgeon at Groote Schuur Hospital, said another reason for doctors not passing patients into the system is because they don’t have enough information about organ donation.
Thomson, who is also the former president of Sats, said new doctors aren’t taught how to talk about organ donation with patients’ families. “If a family doesn’t understand the diagnosis of brain death, they can’t make an informed decision,” he said.
No regulations leads to inequality
Because not all hospitals have to participate in the organ donation process, not everyone has the same access to lifesaving transplants.
“In the public sector,” said Thomson, “there (often) aren’t enough beds in the ICU, and hospitals can’t afford the expensive organ support needed (eg dialysis machines) to keep someone alive while on the waiting list. There is definitely a cost-access problem.”
The WHO recommends that the government sets out transparent rules defining how organs are allocated. However, Foster Mohale, national Health Department spokesperson, said the state doesn’t have such guidelines and that, instead, provincial and regional committees decide who gets donated organs.
Private and public transplant centres share a waiting list. When an organ is donated, it gets allocated based on a points system that considers how long a patient has been in the queue, their age and what the chances are that the transplant will be successful.
Kidney donations are handled slightly differently, and it also depends on the province’s approach.
For example, at Groote Schuur Hospital (which also co-ordinates organ transplants for public hospitals in the Eastern Cape and Northern Cape), the centre from where the donor comes gets one of the pair of kidneys, and the other goes to a patient on the national waiting list.
At Charlotte Maxeke Hospital in Johannesburg (which co-ordinates organ transplants for other public hospitals in Gauteng), one of the donor’s kidneys goes to a private hospital and the other to a public hospital.
However, despite this seemingly fair distribution, access to organ transplants isn’t equal between the two sectors.
The South African Renal Registry notes that 54% of kidney transplants were performed in the public sector in 2020, in line with similar trends from Sats data for 2018.
Untangling the collapsed data paints a different picture. In the Western Cape, more than double the donated kidneys went to the public sector; in Gauteng, though, where most organ transplants are performed, almost 90% of organs went to the private sector – including all livers, lungs and hearts. Only three out of 10 kidneys went to the public sector.
Nationally, seven out of 10 organ recipients were in the private sector.
The Health Department does not have its own data or a national register and must rely on other organisations for information.
Mohale says that the department can’t confirm whether the data are accurate or not, but that they’re “in the process of taking ownership of statistics in the near future”.
Transplant surgeon at the Wits Donald Gordon Medical Centre and incoming Sats president Francisca van der Schyff said the lack of data and transparency surrounding organ allocations reduced the public’s trust in the health system.
She said all hospitals should prioritise organ donation, but that it was difficult to motivate why institutions should invest in it without accurate data.
In response to questions about developing a national transplant policy for South Africa, Mohale told Bhekisisa that there are only “draft regulations on transplants that will cover living and deceased organ donations and allocations”.
How can donation rates be improved?
There’s no magic wand, but countries worldwide are trying to copy Spain, considered the gold standard for organ donation. It has managed to increase donation rates almost 1.5 times since 1989, despite having an ageing population, many patients whose lifestyles push them towards organ failure, and less money for a transplant programme than other countries in Europe.
Spain has an opt-out rule, which means everyone is a potential organ donor unless they specifically say they don’t want to be.
However, the high donation rate is not simply because of this, write Rafael Matesanz and Beatriz Domínguez-Gil of the Spanish transplant programme, but rather because the focus is on what keeps people from agreeing to donation, and efforts to change perceptions.
For example, their national transplant policy focuses on teaching hospital staff to identify potential donors and placing transplant coordinators trained to ask for families’ approval in every hospital.
Chris Bateman reports that the issue was also discussed at the annual Critical Care Conference in Gqeberha.
Professor Mignon McCulloch, head of solid organ transplant at the Red Cross Children’s War Memorial Hospital in Rondebosch and chairperson of the SA Transplant Association, told a session at the conference that South Africa currently had 4 679 patients waiting for organs (2 000 of them awaiting corneal transplants).
McCulloch appealed to ICU teams to identify potential donors and compassionately raise the question of donorship as early as possible with their families, saying one of the biggest barriers to donation was to be found in smaller communities within cultures who followed their own belief systems and rules.
“There are big cultural and religious barriers, and people who tend to feel most anxious about donating are Catholics, Jews and Muslims. However, when you go to their global leaders, like the Pope, the Chief Rabbi or Chief Imam, they’re OK with organ donation, saying their religion is all about helping people,” she said.
McCulloch said that in South Africa, even if you were a card carrying or bracelet-wearing organ donor, doctors still sought permission from the family before harvesting organs.
“I’ve never asked anybody where the card (or bracelet), is. You ask the family!” she said. She stressed how important it was to tell your closest relatives what your wishes are should you die.
Lucille Claassen, an ICU nurse and Transplant Co-ordinator at Livingstone Hospital in Gqeberha, told the session that one donor could save the lives of seven people, and if one included the skin and cornea, benefit more than 65 people. Top candidates for organ harvest included traumatic head injuries, cerebral hemorrhage, cerebral hypoxia (drowning or drug overdose), and a primary brain tumour.
With extended selection criteria, donors who were ruled out included those with comorbidities like HIV and hypertension. Every organ was assessed individually for transplant-ability.
Claassen said that death certification had to be done by two doctors, one with at least five years’ experience. Neither could be part of the transplant team. Successful donation almost always required the early identification of a potential donor, ensuring all prerequisites were met, brain stem testing was done, and referring the patient to the transplantation team. Proper listening and psycho spiritual support of the family were crucial, whether they chose to consent to donation or not.
Dr David Thomson, a critical care specialist and transplant surgeon at Groote Schuur Hospital, told delegates that communication with family was ‘a skill and not a personality trait,’ – one that remained largely untaught in medical school.
One question he asked of his students in setting Critical Care sub-specialty exams was what the ‘next step’ should be if a family refused to accept a brain death diagnosis. The most common answer he saw was, “to give them more information about brain death.”
“The correct answer is to engage with their emotions,” he emphasised.
Thomson said while the patient was still on life support, it was vital to ‘explicitly consider’ whether the family had accepted and understood their loss and were thereby ready to make the transition to discussing end of life care, (donation being one of many considerations). The ‘de-coupling’ of organ donation from this conversation was important, he added.
Saying goodbye
On 10 December 2014, the Lowes heard pair of lungs had become available and Lowe was flown from Cape Town to a private hospital in Johannesburg.
After the surgery, though, she had bad seizures and her stomach was paralysed, her mother said.
After 185 days in intensive care, her body finally gave in. It was just four months before her 21st birthday.
“I’d fallen asleep next to her bed and she reached out her hand and put it on my forehead. She looked at me and said, ‘Thank you, Mommy’. And shortly after, she was gone.”
See more from MedicalBrief archives:
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State launches organ donation awareness campaign
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