For Sandhya (name changed), a 38-year-old housewife in Thiruvananthapuram, life extends from one dialysis to another; one hospital admission to another. It has been so, for the past seven years. A patient with end-stage renal disease, her search for a suitable organ has remained elusive so far.
“I was diagnosed with chronic renal disease some 18 years ago and have had to be on dialysis since 2010. In 2012, when the State government launched the deceased donor organ donation programme, I also registered as a potential organ recipient. Since then I have had two calls from the Kerala Network for Organ Sharing (KNOS) about possible organ donation but it did not work out,” she says
“Time is not on my side any more and I desperately need a kidney. Despite undergoing dialysis thrice a week, I am facing various health issues daily. I cannot sleep at night because I worry about my children,” she adds
In January this year, the Kerala government decided to bring the entire organ donation scenario in the State under the scanner and to streamline the State’s deceased donor organ donation programme, Mrithasanjeevani. Thus when more stringent procedures for brain death certification was introduced, it was expected to boost the trust of both the medical fraternity and the public in the programme. Nearly an year later, it is becoming painfully obvious that the entire exercise has been counter productive.
Kerala’s Mrithasanjeevani, which led the way for the entire nation on how a pro-active government and an aware public can save lives through organ donation, has taken a nosedive.
Far from being a confidence booster, the new reforms have become procedural bottlenecks that most transplant centres would rather avoid.
Brain death declarations are just not happening any more in both private and public sector hospitals as neurosurgeons turn wary.
Deceased donor organ donations have now hit a rock bottom in the State, with just 13 donations happening this year (41 organs donated) against last year’s 72 donations (201 organs donated).
However, neither the number of road traffic accidents (RTAs) nor the instances of brain death have come down at all, doctors say.
“The government tried to reform the brain death certification process to set aside the doubts and aspersions cast on the deceased donor organ donation programme from some quarters. But a lot of technical difficulties have come up in its implementation, affecting the entire deceased donation scenario,” a senior health official told The Hindu .
For patients like Sandhya who have been waiting for a suitable organ since 2012, the cloud over Mrithasanjeevani has just added to their anxiety and desperation. The situation is worse for those waiting for liver because unlike renal patients, end-stage liver patients cannot prolong survival.
The PIL and after
It was following the questions and concerns raised in a Public Interest Litigation (PIL) before the High Court last year regarding the processes and protocols involved in brain death certification that the government decided to make brain death certification process more stringent.
The PIL had speculated about the ‘commercial motives’ of private sector hospitals where more organ transplants have been happening, even though a chunk of the road traffic accident cases were being handled by government medical colleges. “A lot of people, including the political leadership were misled by these speculations. Our medical colleges are overcrowded and functioning with limited facilities and human resource. Less organ donations happen here because we are at best providing sub-optimal care to RTA victims and hence brain death recognition and haemo-dynamic maintenance of brain-dead victims may not be perfect,” a senior doctor at the MCH points out
“It was the government’s knee-jerk reaction to the allegations in the PIL that did Mrithasanjeevani in. Instead of convincing the court about about the transparency and accountability of its cadaver donation programme, the government turned defensive and agreed that it will make the processes more stringent. It amounted to a virtual admission that hospitals were ‘tampering’ with brain- death certification. What it has done to the confidence and commitment of the small community of neurosurgeons who do brain- death certification is irreparable,” says a consultant surgeon in the city.
Tedious processes
The new regulations insist that brain death certification process is mandatorily videographed real time and that a four-member panel of doctors certifying brain death, should include a government doctor representing the Kerala Network for Organ Sharing (KNOS).
The government thus empanelled and trained 150-odd doctors from the Health Service across districts, to enable the brain death certification process.
However, organ donation process has now become more complicated, time-consuming and tedious than ever. Neurologists too have been resentful of the intense scrutiny and the possible legal hassles that they may have to face.
“In every district, the Deputy DMO is coordinating the daily duty roster of doctors who have been trained and empanelled for brain death certification. Brain death certification mostly happens at odd hours. We now find that duty adjustment is a cumbersome process when it comes to the Health Services. The Apnea test to confirm brain death can be time-consuming and has to be done twice in six hour intervals, by the same doctor. The doctor assigned for the day does not get any duty hours relaxation the next day. And none are willing to go that extra mile for this cause either. These technical issues are wreaking havoc with the programme,” he said.
“The internationally accepted core concepts of brain death certification has not changed in the past 40 years and if done by the book, cannot go wrong. If anything, the processes in brain death certification in Kerala is now more stringent than in the U.K. The procedure is not videographed in the U.K. The government’s attempt was to make the entire process more credible but the damage done by the ‘conspiracy theories’ spun around deceased organ donation has been far-reaching, ” Sridhar Nagaiyan, an honorary member of the National Organ Donation Committee inthe U.K, who was in the city recently told The Hindu .
