Organ donation: Transplant counsellors battle grief and belief

Organ donation: Transplant counsellors battle grief and belief

Twenty-year-old Prabhu*, an engineering student, was declared brain dead at a city hospital recently after he met with an accident. Today, at least four people are alive thanks to him - and mnost of the credit is due to the grief counsellors in the hospital. Prabhu’s mother, who wasdevastated after losing her only son, agreed to donate his organs only because she was told about the importance of cadaver organ donation.

The state has an impressive record in cadaver transplants with as many as 2001 organs donated till June 2013 since October 2008, when the cadaver transplant programme was launched. And medical experts said that much of the credit goes to these grief counsellors. They not only console the grieving family but also face the daunting task of convincing them to donate their loved one’s organs.

Mukesh, the counsellor, who convinced the student’s mother, recalled how he made her understand that her son would continue to live through others. “She was hit with deep grief. As I explained the benefits of   organ donation, she held my hands and agreed,” he said.

Nivedhita, who has been a counsellor for over three years both in government and private hospitals, recalled her experience of counselling the only surviving member in a family of 12 to donate her nine-year-old son’s organs after he was declared brain dead. The family was on their way to Tirupathi when they met with a horrible accident and everyone except the mother died on the spot. “Usually we develop a rapport with the kin. Most of them speak well when they are in grief. In this case, I spoke to the brother-in-law of the woman and made him understand the importance of organ donation. Finally they agreed and the liver and kidneys were donated,” she said adding that at least 60 percent of people give their consent when counselled.

Kavitha, another counsellor who worked at a government hospital, recalled the case of a five-year-old girl, who gave a new lease of life to her father. The doctors declared her brain dead after she met with an accident. After they found that the girl’s father himself was a kidney patient waiting for a transplant, they convinced the family to go in for the surgery.

The first step in grief counselling is to get the family to trust them, “We also see which stage of grief they are in. We explain what ‘brain dead’ is and tell them that there is a heart beat only because of a ventilator. Once they agree, we stay with them till the body is handed over,” explained Mukesh.

Unfortunately, they don’t always receive a favorable response. Counsellors said that there were instances when family members screamed or threatened them for suggesting organ donation. Religious beliefs and societal pressure were the major reasons why people refused to donate organs and education has little to do with it. Niveditha recounted how she had once tried in vain to convince the kin of a 35-year-old accident victim, as they believed that if he goes to heaven with organs missing, he would be reborn without those organs. “His wife was a graduate and she was willing to donate the organs but the rest of the relatives threatened her as she was dependant on the family. Finally they refused,” she recalled.

Mukesh too had an experience in a government hospital when the family thought that he was trying to sell the organs of their seven-year-old son. “On the bright side, there have been some uneducated people who have come forward to help. Once a teenage Bihari labourer met with an accident at a construction site in Coimbatore and was admitted to the GH. His father travelled by train without a ticket to come here. When we spoke about donation, he agreed. He didn’t even have the money to take the body back and the final rites were done here,” he recalled.

Unfortunately, there are no specialised courses offered in the country for grief counsellors except Mohan (Multi Organ Harvesting Aid Network) Foundation short-term courses. Counsellors are trained in all aspects including legal, ethical, medical and soft skills. “A grief counsellor is one of the most important cogs of cadaver donation. Only a person with passion and the belief that they can save lives can be in this profession. Ours is the only course in the whole of South East Asia,” said Dr Sunil Shroff, Managing Trustee, Mohan Foundation, which started the courses four years back. They have so far trained about 360 counsellors both in the country and abroad.

He pointed out there was a huge demand for trained counsellors and co-ordinators and as the number of hospitals that register for cadaver transplant go up, the demand would only increase. Nominating a transplant co-ordinator was made mandatory by the government for hospitals registered for transplant.

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