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As an interior designer, 54-year-old Kishore Jain infused life in the homes of his clients. He would have liked to have continued doing so. But he breathed his last in February after waiting for four years for a donor to help him fight heptacellular carcinoma, a form of liver cancer.
Jain (not his real name) needed a bit of liver to be able to live. “We visited three hospitals in Delhi but didn’t come across any donor,” says his daughter Jyoti, 23.
Her father was registered with Sir Ganga Ram Hospital’s liver department for a cadaveric transplant. But 20 patients were already ahead of him in the waiting list. “Getting a donor is all about luck,” says Dr Vinay Kumaran, consultant, surgical gastroenterology at the hospital.
For thousands of ailing Indians, cadaver donation is the link between life and death. Not just the liver, every organ is in demand — and in short supply. Doctors complain of a huge scarcity of kidneys, heart, liver, pancreas, intestines, lungs, heart valves and even corneas and other tissues.
Experts say a new name is added to the waiting list every 10 minutes. “And at least 10 patients die every day while waiting for an organ,” says Pallavi Kumar, executive director of the Chennai-based Multi Organ Harvesting Aid Network (Mohan) Foundation, which creates public awareness of deceased organ donation.
Under the Transplantation of Human Organs Act, cadaver organ donation is possible only when a patient is declared brain dead. “Such patients are dependent on artificial ventilation to ensure that the organs are in healthy condition until they are removed,” says Dr M.C. Misra, chief of the Jai Prakash Narayan Apex Trauma Centre, run by the All India Institute of Medical Sciences (Aiims).
But cadaver donation is still so uncommon in India that the wait for organs is often a futile one. The Mohan Foundation states only 426 cadaver organ transplants took place in India from 1995 to 2001. Not surprisingly, 14 out of 15 patients on the waiting list for organs don’t survive. “In the 22 months since this specialised hospital has been functional, we haven’t got a single cadaver donor,” says Dr S.K. Sarin, hepatalogy head at Delhi government’s Institute of Liver and Biliary Sciences.
For cadaver donation, if the deceased has not pledged to donate during his or her lifetime, the authority to give consent lies with the person lawfully in possession of the dead body. But Misra says that on an average, relatives of only six people out of every 100 people who die (and whose organs can be saved) give consent.
One of the major reasons for this is that relatives are not convinced that brain death is irreversible. “Organs may function only up to 72 hours with artificial ventilation. But a person will never regain life if declared brain dead,” says Dr Misra. “Waiting for cardiac death would mean destroying the organs.” Except for the eyes, which can be preserved for a maximum period of 96 hours in India, other organs have to be transplanted six to 12 hours after being removed.
The government stresses that steps are being taken to promote cadaver organ donation. “A national registry of donors and recipients will be maintained, along with a registry of people on the waiting list. Plus, we will maintain a national human organ and tissue removal and storage network at one or more places along with regional networks,” a health ministry official says.
A system in place could have saved Santosh Goyal. In 2002, she was advised a heart transplant at Aiims but could not get a cadaver donor for eight months. She finally breathed her last at the age of 48. “We kept waiting for a miracle to happen but it never did,” says Goyal’s daughter, Preeti.
Experts believe that the other reason for low organ donation is medical professionals’ hesitation to declare a patient brain dead. Under the act, four doctors — the person in charge of the hospital, an independent medical specialist, a neurosurgeon and the doctor treating the patient — should carry out two sets of tests to confirm brain death at an interval of six hours.
“Not many doctors are willing to identify and certify brain death,” rues Dr Kumaran.
But changes are occurring in some parts of the country — especially in Tamil Nadu. It registered 645 organs from 224 donors in the past three years. “Based on the act, the state government has issued guidelines on the declaration of brain death. So the number of potential cadaveric donors is more in Tamil Nadu than in other states,” says Dr Anand Khakhar, senior consultant and liver transplant and hepatobiliary surgeon at Apollo hospital, Chennai.
In fact, lack of government guidelines is one of the major reasons cadaveric transplant has not taken off in West Bengal. “There is an unwillingness among medical professionals and hospital managements to form the team of four experts,” says Brojo Roy, spokesperson for Ganadarpan, an organisation that promotes organ transplantation in Bengal.
One of the major reasons for organ shortage, doctors say, is the failure to turn potential donors into actual donors. “We need a proactive donor detection programme performed by trained transplant co-ordinators along with the introduction of systematic death audits in hospitals,” stresses Dr Samiran Nundy, chairman of surgical gastroenterology and liver transplant, Sir Ganga Ram Hospital, who is also one of brains behind the transplantation act.
The health ministry official says it is now compulsory for hospitals with intensive care units to appoint transplant co-ordinators who counsel family members. “First, we see if the family is able to accept the death before asking if they would like to donate the organs of the deceased,” says co-ordinator Rajiv Maikheri of Orbo of Aiims.
Experts stress that it is important to dispel myths surrounding organ removals. “Our job is to convince relatives that the donation will not disfigure the body. Nor will it interfere with customary funeral arrangements,” says Patricia N.M. Viego of the zonal co-ordination committee of Karnataka.
Donation is often seen as an ailing person’s final legacy. Anasua (she uses only her first name), daughter of former CSIR director-general A.P. Mitra, donated his eyes after his death, and has never regretted the decision. “I am glad that his eyes were put to use,” she says.
India faces a huge shortage in eye donation. India needs at least two lakh corneas for the one lakh transplants required annually. “Half of the corneas may not be in a position to be put to use. In 2011-2012, around 43,283 corneas were collected versus the target of 60,000,” says Dr Radhika Tandon of the Dr RP Centre for Ophthalmic Sciences, New Delhi.
India lags behind other nations in organ donation. Spain is at the top with the highest organ donation figure from brain dead patients in the world (33 per million). India is low down with 0.05 per million. In some countries, organ donation is assumed, unless someone specifically opts out.
The experts say that it is important to stress that a single person can save the life of at least 25 others by donating organs. “Also, family members of the patient should realise that their nearest one is giving a new lease of life to someone,” says Dr Sarin.
Preeti seconds that. The family ensured that her mother Santosh’s organs were donated. “We couldn’t save our mother, but she at least has saved other lives,” the proud daughter says.
Organ facts
First heart transplant in India conducted in 1994 in the All India Institute of Medical Sciences; 26 heart transplants conducted in the hospital in a year.
First kidney transplant was conducted in Aiims in 1994. Since then, the department of nephrology has received only 73 cadaver kidneys.
At the Organ Retrieval Banking Organisation (Orbo) at Aiims, 16,000 people have been registered as donors of multiple organs. But only 60 have donated so far. Orbo received 175 cadaveric organs and tissues in 2011 as opposed to 105 organs in 2010.
In Karnataka, over 600 patients are waiting for a kidney transplant, 57 patients for a liver transplant and 25 for a heart transplant.
In Tamil Nadu, around 410 cadaveric kidneys have been utilised over three years, but 1,500 patients are still waiting.
More than 2,000 patients are waiting for a kidney transplant in Mumbai.