It's been three years since a landmark law allowed transplants from the brain-dead. But those scouring the country for organs find it's not any easier.
By Vijay Jung Thapa
Every single day Shatrughan Yadav experiences a sickening moment of dread, a horrifying feeling that his son has curled up and died. "No father should see his child slowly wither away like this," he says, patting his 18-year-old son Anjani in a hospital room. For the past four yaears Anjani has been battling with kidney failure. The middle-class farmer family from Kosi, Bihar, has lived out its worst nightmare. They've sold land, exhausted their life savings and Yadav's wife even donated a kidney. But Anjani's immune system rejected it within a week, forcing him to live a life on dialysis and drugs that can cost up to Rs 30,000 a month. Today, no one in the family can donate a kidney. His father is too old and the sisters (both below 18) too young. Anjani is dying and he knows it: "The doctors in AIIMS might get lucky, there might be a brain-dead person whose kidney can save me. But it happens so rarely that I can't see it happening to me. I just don't feel lucky."
Anjani may be right. India's cadaver transplant programme is suffering from a chronic dearth of body parts that has ensured it never really takes off. After years of spirited campaigning, the Transplantation of Human Organs Act, passed in 1994, while banning trade in organs allowed doctors to certify patients brain-dead. It was a landmark. With better surgical techniques and a greater understanding of the body's immune system, it aroused in most doctors a sense of actually being able to help patients with failed organs instead of just looking on helplessly.
The rationale of the Act was simple: if it closed the door to the trade of organs, those in dire need could still get organs from certified brain-dead patients if their families agreed to donate them. But just a few years down the road the thrill has petered out for a number of reasons, like the lack of people donating organs, lack of infrastructure and foresight, loopholes in the Act and even petty things like ego problems. Today those with organ failure can't buy organs, nor can they receive one from a brain-dead patient.
A case in point is All India Institute of Medical Sciences (AIIMS), Delhi. Surgeons there have just completed what could be the first-ever successful liver transplant (see box). In the country's medical circles it is akin to landing on the moon. But are they bringing out the champagne bottles and back-slapping each other in merriment? Not quite. Dr T.K. Chattopadhyay, head of the liver transplantation unit, says: "The success of this operation doesn't matter in the long run. What we need to do is a lot more liver transplants, get out of the learning curve. We need experience for perfection." This is only the fourth liver transplant in AIIMS since 1994. The first three recipients developed complications and died within days. But the more important fact is that transplants are being done at the rate of roughly one a year, when every year at least 60,000 persons in the country need a liver transplant. As Dr Piyush Sahni, another surgeon, points out: "We perform a transplant, get familiar with the problems, the complications. But by the time we do another one, it's like starting out afresh."
Once the Act was passed, many institutes were quick to start cadaver transplants with a flourish. Within months, the first successful heart transplant was carried out in AIIMS. But things went awry soon after. Brain-dead patients almost always land up in neurological ICUs, since the majority are victims of road accidents or internal haemorrhage. In effect, the process of certifying the patient brain-dead has to begin with the neurologist. But in the end, this initiative gets lost and the real glory goes only to the transplant surgeon. Worse, what was happening in many institutes was that transplant surgeons would hover around potential brain-dead patients like vultures.
There are reports of surgeons even sending the relatives of those dying due to organ failure to influence neurologists to certify more patients brain-dead. Such instances have made neurologists wary and it is believed that today they just don't report brain-dead cases. In AIIMS there have been 21 kidney transplants since 1994, but not a single one since August 1996. Says Dr Sanjay Aggarwal, a consultant nephrologist in the institute: "Perhaps the solution is to give the neurosurgeon more credit and make him feel a part of the process."
The other reason for a shortage of donors is related to lack of awareness among doctors and a woeful lack of trauma facilities. Almost 60,000 accident deaths take place every year in the country in the country (in Delhi alone 5,000 persons die on the roads), but only a handful of cadaver transplants take place. The reason is that most brain-dead patients are not even admitted to hospitals. Such patients are usually kept out in the corridors to die, or referred to other hospitals. For a brain-dead patient to become a donor, he has to be kept on a ventilator so that blood circulation continues. "But so few hospitals have ventilators," points out Dr S. Nundy, a gastrointestinal surgeon in Gangaram Hospital. The other problem is that there are still very few centres which have been authorised to certify a patient brain-dead. This often results in the patient just withering away in the ICU because the parent hospital just doesn't want to take the initiative to call doctors from these authorised centres. Besides, maintaining a brain-dead patient in an ICU costs money. In Bangalore, St John's National Academy of Health Sciences has written off bills of over Rs 2 lakh for maintaining such patients. "One solution could be to try and start a third-party insurance for accident victims and we are thinking of moving a pil on this," says Dr Philip Thomas, a leading surgeon there.
In Bangalore alone, since June 1997, there have been seven cases of proven brain-dead victims. Yet, not a single one materialised into organ donation simply because the relatives refused. Experts today feel that there is a lack of understanding of how to approach the relatives of a brain-dead patient. Obviously, the doctors of the transplant team are not allowed by law to do this. A certain sensitivity is needed. Explains Dr Sajal Sen, who is in hospital administration and is trying to work out a module that hospitals can follow for cadaver transplant programmes: "You have to keep their interests in mind foremost." In the West there is a 20 per cent acceptance rate of those agreeing to donate organs. But in India the figure is abysmally low.
In fact, a recent behavioral study conducted in Delhi shows various interesting reasons why organs are not donated. Topmost being the fear that the patient, in reality, may not be dead -- his heart is beating, he looks normal, so why remove organs in such circumstances? The other major fears seem to be body mutilation, images of harassment (filling up of forms, not getting the body back in time), difficulty in taking decisions in a crisis and that it could be against one's religion. The consulting doctor, one who has been in contact with the family right from the beginning, needs to be aware of all these issues and tackle them sensitively.
But a silver lining in the study was the fact that many professed a desire to donate organs, only they did not know how to go about it. The Organ Act talks about a donor card but there is no authority to issue one. Besides, right now the donor card really has no legal status. For instance, if a brain-dead patient has a donor card but the relatives refuse to donate the organs, nothing can be done. Some doctors are lobbying for a stronger approach, like, say, in Belgium or Austria, where the term "presumed consent" is the law -- if you haven't specifically mentioned the fact that you don't want to donate, then it is understood that the organs can be removed. Though many feel that such a measure would be too strong for India right now, what needs to be done is to build up a desire for donation by using various methods. Says Nundy: "In the West, an interesting study showed that when the doctor took a priest with him to talk to the relatives, they almost always agreed to donate."
But right now the West is way ahead in organ transplant. Cadaver donations are high, success rates are good and everything works like a well-oiled machine. For instance in, say, Europe, the names of all those waiting for organs, along with their tissue types and blood groups, are stored in a mainframe. Every time an organ is available, transplant coordinators swing into action, locating a suitable recipient who could even be in another continent. One team retrieves the organ and packs it. Another, a thousand miles away, receives it and implants it within hours. The waiting period for most organs is less than a month. In the UK, 600 cadaver transplants took place last year for liver and heart alone. In contrast, there were less than six in India.