Dying while giving life: The heartbreaking tragedy of a living donor death

Kamini Komkar, a 42-year-old home maker from Pune’s Hadapsar area, was in perfect health. So perfect that she was considered fit enough to donate a part of her liver to her husband Bapu, who was suffering from advanced liver disease.

By undergoing a surgical procedure to remove part of her liver and transplant into her husband, she probably believed she was going to save his life. As with most live liver donors, she probably expected to recover within weeks and lead a normal life.

But things did not quite turn out that way at Sahyadri Hospitals on August 15. Bapu Komkar died within hours of his surgery. Given that it is a complex major surgery on an already sick individual, liver transplant recipients have a mortality rate of 10% to 20% in the first few weeks.

But for the Komkars, something worse was in store. Around a week after her surgery Kamini Komkar went into what has been described as sudden shock and also died. This is very unusual. She was a healthy person. That is what makes this tragedy particularly shocking – and a matter of public concern.

Around the world, liver transplantation is an established procedure with a high success rate. In the West, the large majority of liver transplants are performed with organs obtained from donations after death.

Deceased donation is the most common way of obtaining multiple organs from an individual whose brain or heart has irreversibly stopped and whose family consents to donation. However, though laws are in place in the rest of the world and in India too, such donations are infrequent. As a result, surgeons devised procedures to obtain organs from the living, though this means subjecting a healthy person to a surgery.

For many decades, kidneys have been transplanted from living donors. It is safe – though there are questions about its impact on the donor in the long term.

But the liver is somewhat different.

The liver seems like a single organ but has parts that can be separately removed with their own blood vessels. If a part is removed, the liver has an enormous capacity to regenerate itself.

In 1989, Russell Strong, an Australian surgeon, decided to transplant a small part of a mother’s liver into her baby who was dying of liver failure due to a condition called biliary atresia. It was successful.

Soon, surgeons across the world started performing this procedure for children. They removed only a small portion from the liver of one of the parents, just enough to meet the child’s requirement. Though it also carries a small risk for the donor, living donor liver transplantation from a parent to a child is well accepted.

Soon, surgeons from East Asia started performing this procedure on adults. This meant removing larger portions of the donor’s liver since adults need more liver tissue. In turn this meant a higher risk for the donor. In the standard adult-to-adult living liver transplant, around 60% to 65% of the donor’s liver is removed with the assumption that the remaining 35% to 40% will sustain function and grow back.

This is a perilous tightrope walk. Though the recipient does not have a choice but to undergo the procedure, the donor does. If too little is removed the recipient suffers; if too much is removed the donor suffers. There have been donors including in India who have themselves suffered from liver failure after donation and needed emergency liver transplants.

India now performs the largest number of living donor liver transplant procedures in the world (though in proportion to its population, the numbers are limited). A large proportion of these are with live donors and for adults.

Indian surgeons have been innovative and have even described technical modifications. Their expertise has opened out an option for those dying from liver failure. But like most specialised healthcare in India, these procedures are largely performed in the private sector. Costs are high making it unaffordable for a majority. In addition, one needs a healthy and willing donor in the family.

Though hard data on outcomes is lacking because of the absence of a central organ donor registry, in general, the results are satisfactory. As the procedure is cheaper in India than in many developed countries, it has also led to a large number of foreigners coming here to get liver transplants.

Living liver transplantation has invited intense scrutiny across the world because the safety of the donor is at stake. The rate of donor death quoted in current global literature , varies from 0.2% to 0.4%. In other words, on average, three in 1000 or one in 350 healthy donors will die. For living kidney donors, this figure is one in 3000. Donor death rates have globally reduced over the years.

In most developed countries a donor death is treated as a major event and is subjected to root-cause analysis. All donor deaths are reported and audited. In the US, large experienced units have been temporarily shut down pending inquiry.

Consent for any surgery includes explaining to patients about the potential risks versus benefits of the procedure. Most accept the trade-off. Consent for living donation is unique because there is no direct benefit for the donor and a small but definite risk. Full disclosure during consenting means that the donor should be informed about all potential complications, including death.

This should involve providing the death rate for donors in the country but we do not have accurate figures for India.

Consent in Indian healthcare tends to be cursory and paternalistic. To suddenly elevate standards for living donation where coercion needs to be identified and complications need to be disclosed is challenging.

While I have witnessed family members courageously offering to be donors in spite of being informed about potential harm, I have always wondered whether this is based on autonomous decision-making. For example, in India’s social environment, it would be naive to ask a wife in front of relatives about her willingness to donate her liver to her husband and accept this affirmation as informed free consent

India does not yet have a reliable mandated registry for transplant outcomes. There is no mandatory reporting and audit of complications including death in living donors. To my knowledge only two cases of donor death have been reported in academic literature, one from Chennai and another recently from Bengaluru. But there have been several news reports from across the country about donor deaths.

While all cases of donor death do not constitute negligence, it is an event where a high-quality audit would enable transplant surgeons to develop strategies for prevention for others.

It is incongruous to talk of India’s leading global position in living liver transplant without data on results, including donor safety. India’s transplant regulators have a powerful instrument in the form of licensing and relicensing centres. But the country has failed to use it as a means to improve accountability.

For a field whose existence entirely depends on living or deceased donation – in other words, trust and public perception – this is crucial.

Meanwhile, in Pune the Komkar family has filed a police complaint about Kamini Komkar’s death. The state authority has constituted a committee to inquire into the tragedy. In an unusual move, the hospital’s licence for transplants has been temporarily suspended.

It is very difficult in India for ordinary families to take on the system. Most families who have lost a donor move on with time. When the young children of the Komkar couple sobbed in grief before the prying TV cameras, they also said that they feared for their financial future because the family had taken big loans for the transplant.

Russell Strong in his later writings expressed concern about the lack of transparency and underreporting of donor deaths and even questioned the ethical basis for the procedure. It is often stated that donor harm including death is inevitable. This should not be a smokescreen to avoid reporting, auditing, learning and making all efforts to reduce this catastrophe. It is the least we can do for our brave citizens who stake their lives for their loved ones.

The calamity that has struck the two Komkar children who lost both parents in a week is impossible for us to fathom from a distance. One wonders whether a public acknowledgement of our well-intentioned complicity as surgeons is in order. But a collective will from transplant professionals to introspect, subject ourselves to scrutiny may help prevent such tragedies from occurring again. We need to start by breaking the conspiracy of silence.

Sanjay Nagral is a gastrointestinal surgeon from Mumbai. He has been involved in liver transplantation and also writes on issues of public interest.