Grief counsellors who help return sight to the blind

On a recent Sunday afternoon, the Dhaka Medical College Hospital (DMCH) morgue housed one lonely deceased body. The body was 'unclaimed' at first. Later when the family was contacted, they refused to claim it. 

"This happens sometimes when the family is too poor and does not want to take on burial expenses. The body will be handed over to Anjuman Mufidul Islam [charity organisation which offers burial services]," said Sandhani's grief counsellor, Md Agbul Islam. 

"Since the body was 'unclaimed,' it was a police matter. We could not take the cornea. This was a lost opportunity," he added.  

The strong smell of formaldehyde remained. The morgue workers told Agbul, who has been working at DMCH for 18 years, how the pathologist protested an autopsy order for a three-day-old deceased body. 

Three days is too long for corneas to be viable for donation. After a person dies, the easiest organ donation is that of the cornea, which comes with a small window. "Within six to 12 hours is preferable," said Agbul. 

"We have had cases when a [family] member would be patient to hear us out, listen and also agree to donate but if someone else — and it doesn't matter how the person is related to the deceased — objects, the whole thing falls apart."

Md Agbul Islam, Sandhani Grief Counsellor

Passing by the morgue registrar, Agbul was told 35 people had died on the previous day [2 December] at DMCH. 

However, the biggest challenge is convincing the deceased's family to donate. In many cases, even when the deceased pledges a cornea donation before one's death, the family can oppose and refuse the donation. 

This is where the grief counsellors come in. They are called Eye Donation Counsellors (EDC) of Sandhani, a voluntary welfare organisation. This specific program was launched in 2004. 

Over the years, Sandhani's grief counsellor team changed in size. While in the late 2000s to mid-2010s, it was the biggest with 12 members, including two Sandhani International Eye Bank (SIEB) technicians, currently it is just Md Agbul Islam and Jahangir Alam who sit at the far end of the outdoor department at DMCH. 

Every day, Agbul and Jahangir make rounds and patrol the wards to look out for cases of donations — i.e., if a patient is nearing death. Among the emergency wing, ICU, casualty ward and neurosurgery department, the morgue holds the most potential. 

They said they approach about eight families (maximum) to at least two families every day. 

How to counsel grief

"We speculate first from a distance," said Agbul. On their rounds and from different departments' on-duty medical personnel, Agbul and Jahangir keep tabs on potential cases. Each person "comes with about five to six members" whom the counsellors have to approach. 

They start from a distance, evaluating the circumstances. "Every family is different," said Jahangir, who has been working as a grief counsellor for Sandhani since 2010. Although the work has been ongoing for years, "practice" did not make it easier. 

Agbul said it is easier to approach a family with a two-person team than solo, but that is not always possible since there are only two of them. 

The duo said there have been instances when family members, including extended ones, became hostile. "Our job is to ask and tell them the facts. We tell them how cornea donation [from two eyes] can help two people out of over 5 lakh who are visually impaired," remarked Agbul, reiterating, "but it's really not easy." 

They have to approach families who are grieving and in most cases, according to the counsellors, completely unaware of the possibility of cornea donation. "We have had cases when a [family] member would be patient to hear us out, listen and also agree to donate but if someone else — and it doesn't matter how the person is related to the deceased — objects, the whole thing falls apart," explained Agbul.

That "person" can even be unrelated to the family in question, but an elderly, pious man. 

Does religion play a part? "You can say yes. Many question if donation is permitted in the religion, which of course it is. Countries like Iran have a remarkably high rate of cornea donation," replied Jahangir. 

Two misconceptions that seem to dominate the counsellors' conversation with potential donor families are: in the afterlife, the donor in question will be blind and how will the deceased body look stitched up after the removal of the eyeballs. 

In case of the latter, "you will not be able to see the procedure. We take out a very thin layer of the eyes and also place a plastic in its stead. You won't be able to tell, let alone see any stitches. And no, we do not remove the eyeballs." 

The procedure is done using a corneoscleral rim excision.

Overall, in the counsellors' experience, families with high education backgrounds are more willing to listen and perhaps donate than those with lower education backgrounds. At the same time, those belonging to a Hindu family are more likely to donate. 

The highs and lows

Why did the EDC team reduce in size? "After counsellors left, we [the organisation] did not find it cost-effective to find replacements," said Saiful Islam, executive coordinator of Sandhani.    

The collection — a minimal medical procedure which takes less than 20 minutes — is followed by evaluation at Sandhani. This means testing to see how viable the cornea is for donation and then storage. 

On average, out of 100 corneas collected and evaluated, 10 are likely to be dismissed. 

The counsellors blame lack of awareness, above all else, on their low count. Since 2004, Sandhani's grief counsellors have been able to collect over 200 corneas. They also visit other public hospitals once a week for potential collection but remain stationed at DMCH. 

In December 2021, the counsellors saw one of its success stories unfold when they approached the deceased Anis Jaman Tuhin's family. "We listened to what they had to say," recounted Tariqul Khan, Anis' brother-in-law. "We understood the donation as a social service, and there is no harm, right? So if I can do something to benefit someone else, what's the problem then? They [counsellors] explained how there are many people in need, so we said yes."

Agbul and Jahangir also field "pledges" for volunteer donation— forms submitted by individuals who pledge to donate their corneas to Sandhani. Currently, about 50 monthly pledges on average come through. "But you have to understand, we won't see them [the donation] immediately. It will happen after many years if not decades," explained Agbul.   

While the work is extremely slow and revolves around death and a family's grief, the counsellors believe in its purpose. "We know we are on a payroll, so of course we want to do well at our job. While the success rate [of donation] is extremely low, there's immense satisfaction when we can collect," explained Agbul. 

The counsellors also strongly reiterated the need for advertisements and social campaigns to raise awareness of the work they do so that more people will be willing to make the donation. "It is not possible to 'do more' in this manual way," said Agbul, while we walked through the DMCH corridors. 

Because, on the other end of this donation spectrum are those waiting to receive corneas. Sandhani has a list of over 6,000 people waiting for cornea. "Once we collect and see it's viable, we look at the recipient list [those in waiting at Sandhani]," said Saiful Islam. 

Sandhani National Eye Donation Society (SNEDS) began in 1977 in Bangladesh. It was primarily an initiative of a group of students at DMCH. In 1984, it launched Sandhani International Eye Bank (SIEB), which collects, evaluates and distributes corneas across the country. 

While international accreditation has limited the collection rate by barring collection from unclaimed deceased bodies, Saiful believes that national-level awareness campaigns involving religious gatherings (such as Friday sermons) will bring about much change.