A tourist who stayed on

Ordinary Indians are giving but given the high costs of transplantation they are currently not receiving. For deceased donation to become a national movement, this anomaly will first need to be acknowledged and changed

Teresa Fernández worked as a tutor at the Torrecárdenas University Hospital, in Almería, a city in Spain’s Andalusia, known for its pristine beaches. Her wanderlust had taken her to Europe, USA, Iceland, China and Japan. After retiring in June last year, she aspired to visit distant worlds. When she flew into Mumbai on January 5, it was to be the start of a trip to explore India.

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On her first day in Mumbai, after a boat ride to Elephanta caves, she disembarked at the Gateway of India and got into a bus. On the way, she complained of a sudden severe headache and weakness in her limbs. She was rushed to Jaslok Hospital where a CT scan revealed a massive brain bleed. She was known to have hypertension, which predisposes to catastrophic brain haemorrhage. Neurosurgeons performed decompressive surgery on her brain, which is often a desperate step to try and instantly relieve brain swelling. Unfortunately, this had limited success as the brain had suffered irreparable damage. Teresa was soon brain dead.

The concept of ‘brain death’ is somewhat enigmatic. Death in any case is difficult to fit into a biological definition but it is easy to understand it as stoppage of the heart. Brain death on the other hand is challenging to accept as death because the heart is still beating. ICU doctors in the late 1950s saw patients whose brains were irreversibly damaged, who could not breathe on their own and whose hearts were beating but would inevitably stop soon. It was as if the body was passing through two stages of death - first brain and then heart. This had two implications. An obvious one was that it was futile to put these patients on artificial ventilators as the heart was inevitably going to stop. But there was another fallout that propelled countries to legislate on brain death as an alternative form of dying. The human race innovates when it’s a matter of survival.

The 1950s was also a time when doctors across the globe were obsessed with the idea of replacing decaying, dying organs with healthy ones, what we now call ‘transplantation’. One of two kidneys could be removed from living individuals but the only source for other organs was the dead. Brain death was a state where the heart was beating and supplying blood to organs which were alive and healthy. So if the law recognised it as a form of death, one could remove organs and use them for transplants without being accused of murder.

The necessity to create a legal framework to procure organs from ‘cadaveric’ or ‘deceased’ donors for transplantation pushed countries to promulgate laws recognising brain death as a legitimate form of death. The US was one of the first in 1968, followed by Europe. This helped transplantation of organs like liver, heart and lungs. Today a majority of transplants in the Western world are performed by donations from deceased donors who have consented either during their life or whose families consent after they are brain dead.

As soon as she heard about her mother’s condition, Teresa’s daughter Aitana, an emergency medicine doctor herself, rushed to Mumbai. After seeing her mother in the ICU, Aitana made what is a rare request. She pleaded that the ventilator be turned off and her organs be utilised for transplantation. Aitana was suggesting what is normal practice in Spain. It’s not that Jaslok doctors hadn’t thought of donation, but were reticent because a foreigner was involved. Aitana made the decision easy for them.

Spain has one of the world’s highest rates of donation from deceased. In the field of organ donation, there is a much discussed ‘Spanish model’. Why do the Spanish donate organs more than others? One reason highlighted is that in Spain, end of life care protocols are integrated into ICU protocols. In other words, ICU staff also promote organ donation as part of their work. Of course the Spanish have campaigned hard for promoting donations. They have also moved onto a model called ‘opt out’ in which it is presumed that all citizens have agreed to donate organs after death unless they have expressed a wish against it. But to ascribe the Spanish success only to these reasons would be reductive.

Behind the so-called Spanish donation model is also a universal health care system which provides free transplants to all those who need them irrespective of their social class. Spain has high levels of performing transplants for its citizens. People give because they also receive. It is not difficult to understand that organ donation needs social solidarity and high levels of trust in the healthcare system. Though it is facile to compare a developed European country to others but this is one reason strong social hierarchies are obstacles for others to emulate the Spanish.

There are of course extraordinary stories of ordinary families in India who in the midst of sudden intense grief of the death of a loved one agree to donate. But such instances are largely restricted to private hospitals in large cities who promote it partly because they get organs for their own patients. Ordinary Indians are giving but given the high costs of transplantation they are currently not receiving. For deceased donation to become a national movement, this anomaly will first need to be acknowledged and changed. When citizens understand that by participating in a culture of increased donation, they or someone from their family may benefit in case they need a transplant in the future it is not altruism but instead self-interest that is at work.

Teresa’s organs were transplanted into four Indian and a Lebanese patient. Her eyes were not donated. Aitana was quoted in a Spanish newspaper as saying “She always said that she didn’t want to donate her eyes because it would be very strange to see the world from someone else”. But Teresa lives on amongst us anyways. As a tourist to Mumbai who now has permanent residence in our hearts.