Between life and death: Do you think about organ donation?

Infographic: TBS

On 2 January last year, architect Mubasshar Hussain passed away in the capital. Among other things, he was sincere and outspoken about faulty city planning. 

The only time I spoke to the revered urban planner was in late November 2022. He spent over 60 minutes on the phone, speaking about the city's slums. And every once in a while, between taking questions, his sincerity became overwhelmingly pronounced. He cared about the people. 

Perhaps this is also why he had decided much earlier that on his demise, his body would be donated to a medical college. "He had let us know in advance. We were all well aware of his wishes," recounted his daughter, Sonia Hussain Kristy. 

After his death, Hussain's body was taken to his hometown Brahmanbaria. "I remember when relatives from our hometown asked where the burial would be, and I responded with 'the body will be donated'. Not one person objected," said Sonia. 

"They only requested that they get to see the body once to pay their respects." 

Mubasshar Hussain's body was donated to Bangabandhu Sheikh Mujib Medical University (BSMMU). He was survived by his wife and two children. 

"My mother always used to say she objects to his wishes. But I remember when he passed away, she changed her mind on her own, almost instantly. She said to respect his wishes," added Sonia. 

Family consent, among other factors, is perhaps one of the most important factors in body or organ donation posthumously. Upon one's death, if the deceased person's family or next of kin objects to one's decision to donate, it can certainly change the body's final resting place. 

While body donation is essential for medical research, posthumous organ donation is equally, if not even more, essential, because it can almost immediately save lives. 

Bangladesh's Human Organ Transplantation Act first came into effect in 1999  allowing organ donation from brain-dead donors and related living donors for transplantation. Last amended in 2018, the Act now allows organ donation from living extended relatives – expanding the donor pool from previously allowing only close relatives. But the number of posthumous donations in the country remains discouraging, to say the least. 

"You have to remember, posthumous donations and also living organ donations fall under tertiary healthcare [typically hospitalisation, requiring advanced equipment and expertise because of a severe or unusual medical situation] – meaning this is not prioritised," said Dr Md Sanwar Siraj, a post-doctoral research fellow at the Institute of Biomedical Ethics, University of Zurich. 

In the case of posthumous donations, where the donor is not at risk of losing anything, other factors such as socio-cultural beliefs and religion, as well as lack of awareness and inadequate medical infrastructure come into play, according to researchers and doctors. 

When deceased bodies are donated to medical colleges – such as in the case of Mubasshar Hussain – the bodies are used in several ways to advance the medical field, starting from medical education and training.

"First-year medical students attend a class at their respective college [something called dissection lab] where the teacher shows the muscles, veins, arteries and nerves among other structures using a cadaver," said AHM Nayeem, a final-year medical student at Sir Salimullah Medical College. 

"In the third year, medical students go to a medical college or hospital morgue  to attend a forensic medicine class, which includes more in-depth study of the body." 

Beyond this, depending on the medical student's speciality, cadavers – these are well-preserved through the process of embalming so one body comes to use multiple times – are more widely used at the post-graduate level.

The development of medical devices and advancements in medicine have also been propelled by the study of human cadavers. 

"The use of cadavers in medical training and education is in decline elsewhere [in the world] because the methods of teaching are advancing and [because of] lack of ethical practices," said Dr Zinnat Ara Yesmin, Associate Professor, Department of Anatomy, BSMMU. 

"However, medical research is one area where the primary subject is anatomy and where cadaver is used to teach structural anatomy." 

She also said there is an acute need for us to build our own database using cadaveric research, and expand medical research.   

"Utilising cadaveric research implies that the database will incorporate data derived from research methods (such as anatomical studies, pathology, or even experimental procedures performed on donated cadavers) belonging to our own population (people of Bangladesh)," she added. 

After revered urban planner Mubasshar Hussain passed away on 2 January last year, his body was donated to Bangabandhu Sheikh Mujib Medical University. Photo: Courtesy

How many body donations does BSMMU get annually? 

"Somewhere between 4-5. There are also years when the annual intake was zero – we did not receive any in the three pandemic years," Dr Zinnat said. This is not adequate for medical teaching-learning and research purposes.

This is not an easy subject. The death of a loved one can be potentially very jarring for an individual. At a time of heightened grief, not many think of posthumous body donation. This generally happens when the deceased person makes it known to her/his next of kin of their wishes to donate to medical research. 

Was the process complex? "Absolutely not. My father [Mubasshar Hussain] informed the [BSMMU] medical college in advance and had all the required papers ready. We did not have to do anything in actuality. Phone calls really [to coordinate]," recalled Sonia. 

An eye for a life

"There have been so many times our team returned empty-handed from homes because someone in the family objected to the posthumous donation," said Professor Dr Md Tosaddeque Hossain Siddiqui, former President, Sandhani – a voluntary organisation run by students of medical colleges that builds and manages blood and organ donation.

The 40-year-old organisation has made strides in carrying out cornea transplants across the country. 

"Cornea transplant is the easiest medical procedure [in terms of organ transplants]. Sandhani has a dedicated team to retrieve corneas from deceased donors and operate the eyes onto the recipients. We have the best, modern technology to preserve the corneas as well. We are well-equipped for the task, but we don't have the main thing: corneas," said Dr Hossain. 

In August 2022, a TBS story reported against an annual demand for 20,000-25,000 corneas, Bangladesh's lone eye bank under the voluntary organisation Sandhani Eye Hospital can collect only 20 to 25.  

Have the figures of the collection improved? "Not quite. We hardly meet our target." 

If a patient were to regain eyesight through donated corneas facilitated by Sandhani, it would cost well within Tk50,000 for an individual per cornea. 

"Much less than that I would say. The cornea itself is free. However, the fees are of the surgeons, treatment costs (including medicine, etc)," he said, "if one were to opt for imported corneas, the cost jumps up to Tk3-4 lakh per cornea."

The government of Bangladesh passed the Blind Relief (Donation of Eye) Act in July 1975 – donated corneas have been collected and used for transplantation following the 1975 act. 

To date, Sandhani collected 4,161 corneas and transplanted 3,504. Of the corneas transplanted, only 130 came from pledgers. In this case, even after individuals pledge to donate after death – family or the next of kin can stand in the way.

"We have had 44,106 pledges to date," said Saiful Islam Chowdhury, Coordinator, Sandhani. 

"Without explicit consent from the bereaved family of the deceased, it would be practically impossible to remove organs even from consented deceased donors," said Dr Sanwar Siraj, former Assistant Professor, Department of Government & Politics, Jahangirnagar University, who also published journals on challenges, bioethics and religion in Bangladesh's organ donation. 

203 corneas were collected by Sandhani through counselling of the deceased's family. "We started to have grief counsellors in 2011. Something we were not quite aware of earlier," recalled Dr Hossain. 

The rest were collected from unclaimed dead bodies.

Section 5 of the Human Organ Transplantation Act amended in 2018 prescribes  "if, 24 hours after brain death, nobody has claimed the dead body from the hospital, or clinic, the person with administrative authority can decide." 

Moreover, "in the cases of eye, skin and tissue donations, if the dead body is in an organisation or other place covered by the administration of the District Commissioner, then the District Commissioner can authorise the donation."

Although the legal framework is in place, "even some ophthalmologists hesitate to perform the surgery," said Dr Hossain. He also pointed to an international standard policy of Orbis International which prohibits collecting corneas from unclaimed dead bodies. 

"We had to oblige to secure our international accreditation certificate — this is also when our annual cornea collection figure hits a slump," he explained. 

How do you ease the suffering of 20 million people?

In Bangladesh, more than 20 million people suffer from some type of kidney disease, and an estimated 40,000 people suffer from kidney failure or end-stage kidney disease. 75% of these patients die from lack of dialysis or kidney transplant treatment.

While living-donor kidney transplants do occur in the country, they happen in inadequate numbers. The first kidney transplant in Bangladesh was performed in 1982, and around 3,500 transplants have been conducted so far. However, doctors estimate that the country requires at least 5,000 kidney transplants per year.

Then there is the cost of kidney transplants of course – which push most patients into financial conundrum. 

Sarah Islam was 20 when she passed away in mid-January 2023. She donated both her corneas and her kidneys, with the latter donation marking the country's first-ever cadaveric kidney transplant. Photo: Courtesy

"There are two types of transplants recognised by medical practitioners around the world. The first is live-related, where the kidney comes from a living donor, and the other is cadaveric, taking an organ from a deceased person," said Dr Harunur Rashid, president of Kidney Foundation Bangladesh, in an earlier interview with the TBS. Family's consent is key, he reiterated. 

Last year the country saw its first cadaveric transplant. In mid-January 2023, Sarah Islam, a 20-year-old girl, was pronounced clinically dead after being terminally ill since childhood from tuberous sclerosis.

On 19 January last year, doctors conducted the country's first-ever cadaveric kidney transplant (the process of transplanting kidneys from brain-dead medical patients). 

"My daughter was something else," said Shabnam Sultana at her residence recently. She was just finishing an interview with a television channel. She was also due at a programme at BSMMU the following day, 19 January.

"An event to mark Sarah's contribution," she said, sitting in her daughter's room surrounded by portraits and photos of a smiling face. 

"Look at this one," said Sultana, pointing at a colour sketch of Sarah where the visible marks on her face are replaced by tiny white flowers. "If she had seen it, she would have loved it." 

When did you know Sarah wanted to donate? "The year before [2022] when she fell terribly ill and we were making hospital rounds again, things turned dark. I think that was when she realised or thought she would not make it. She told me she wants to donate," recalled Sultana. "I nodded along really – yes to anything Sarah wants." 

Sultana remembers January 2023 as a surreal time. "When the doctors approached me to inform me of this option to donate… I agreed," she said. 

The Sarah Islam Cadaveric Transplant Cell was inaugurated at the Bangabandhu Sheikh Mujib Medical University in February last year. It is designed to be a place to raise awareness, research and campaign for cadaveric organ transplants. 

Sarah donated both her corneas. Both the recipients are doing well. She also donated both her kidneys. The recipients were two females in their 30s – Shamima Akter and Hasina Akter. 

Although Shamima is still living healthily, Hasina Akter passed away from complications. 

On 25 January this year, the second kidney cadaveric transplant was performed at BSMMU and the National Kidney Foundation. The donor was a 38-year-old brain-dead man. The recipients were two individuals. 

Cadaveric kidney transplants can potentially help people in the thousands in impactful ways. 

"It's a medically sound procedure. However, an infrastructure is required to collect kidneys from brain-dead patients," said Dr Siraj, who emphasised the need for a national database or registry.

What happens around the world?

India is a good example to follow where the cadaveric organ donation rate significantly improved after 2013. 

Researchers claim the widening of the donor pool is key. This included, in India, non-Road Traffic Accident (RTA) brain death donors,  acceptability of elderly population donors (>60 years) by the transplant teams, early identification of potential organ donors and better protocol-based management of the cadaver organ donor.

Meanwhile, Sri Lanka boasts a high percentage of posthumous cornea donations specifically. 

In Europe, Spain is considered to be a leading example of organ donation. One key is a national framework and campaign to promote the practice. 

The country has something called the opt-out system, where individuals are presumed to be organ donors unless they explicitly choose to opt-out. This is also prevalent in other countries such as Belgium, France, the Czech Republic, and Portugal, among others. 

Doctors and researchers in the field amplified the need for an awareness campaign. Religion plays a crucial role and most believe that it is wrong or prohibited to donate organs or bodies after death. 

"But if one were to look closely, our religion [Islam] actually says the opposite," said Sultana. 

Building an infrastructure to conduct cadaveric transplants is another key factor. 

"I still remember how we had a network of ward boys who would inform us about potential brain-dead patients at the emergency centre and elsewhere at DMC," recalled Dr Hossain. 

"It was the 1980s and we would rush to collect the corneas [from the unclaimed bodies]."