Supporting a family through the loss of a loved one and being part of the organ donation decision making process at such a tragic time is a privilege. Often, donation is the only good thing to come out of a tragic situation. While it could never take the pain away for a family, it can give them some comfort at a sad time.
Being a Transplant Coordinator enables one to help families make choices that can save many lives. It is not just about bringing a smile to someone’s face but the fact that he/she is given the opportunity to exercise skills that have an impact and can bring about a meaningful change. However, the work of transplant coordinator is by no means enviable. Working with grieving families can never be easy. And grief is not known to be predictable.
Each donor story is different as each family and their responses differ and so do the circumstances that surround the death of a potential donor. Organ Donation is still a relatively new phenomenon and most people that are involved – be it the family members, the medical fraternity, the hospital administration, the police personnel, the forensic expert, media etc. – react differently every time a donation process is taking place. As a result, there are no tailor-made responses that a Transplant Coordinator can be ready with. He/ She needs to imbibe many qualities that will equip him/her to deal with these varied scenarios and situations.
Hearing “No” is part of a Transplant Coordinator’s reality. In the face of such high level of rejection, a coordinator should seek out every single success and use that as a leverage to get past the next rejection. Drawn from real life successful case studies, this article highlights some of the qualities that a Transplant Coordinator needs to have.
Donor No 1:
Aged 18 years, resident of Bihar
Declared brain dead on April 26, 2011 in Rajiv Gandhi Government General Hospital (RGGGH), Chennai
This was an exceptional and challenging case in many ways. Ram Babu’s father had arrived that day from Bihar. Of course, he only spoke and understood Hindi. The Transplant Coordinators at the RGGGH could not speak Hindi at all. I happened to be in Chennai for a training program and was called to speak to the father as I understood the language. It was going to be my very first opportunity to counsel a family for organ donation and needless to say I was nervous.
Ram Babu was the only son amongst four children. He had come recently to Chennai to work as a laborer on a construction site and had died due to head injuries that he had sustained in a fall on the site. It was a young and tragic death. The family was extremely poor. The father wearing tattered clothes looked bewildered in the midst of the teeming, swarming corridors of the government hospital – noisy, chaotic and packed with people.
It must have been even more bewildering for him that not just had he been given the news of his only son’s death, he was also now being asked to consider donating the organs. The situation must have seen so bizarre to the father, standing there in a new city after a long and tiring journey, people speaking an unfamiliar language asking for his son’s organs to save the lives of people that he has never met and will never know. It was, by no means, easy for me to have that discussion with the father. I was also very emotionally charged and had trouble controlling my tears.
The father refused for donation and I remember thinking that it was the only logical thing for him to have done. I accepted his decision but requested him to give his final decision only after he had been alone with himself for about 10-15 minutes, away from the madness. Just before he was walking away, I asked him, “Do you understand and believe that there is nothing wrong or immoral happening here?” He looked at me and said, “I understand that YOU cannot do anything wrong or immoral.”
SINCERITY – “It is best to be yourself, imperial, plain and true.” – Robert Browning
The father returned around half an hour later and gave his consent for organ donation. I truly believe that somewhere in all that was going on, he decided to place his trust in me. He believed that I was being sincere in my approach and in my request. He was able to have the faith to take this very difficult decision at a very difficult time.
As Transplant Coordinators, we have to inspire that faith in the families whom we work with and it can only come through an honest and sincere approach and being truthful at all times.
Donor No 2
Ms Marie-Thérèse Hampartzoumian
Aged 68 years, Citizen of France
Declared brain dead on March 14, 2014 at Max Hospital Saket, New Delhi
Marie-Therese was a French national. She had come to Delhi along with her husband to visit her son who works in an MNC in Gurgaon, and to travel to Agra and Rajasthan. France follows the “opt out” system for organ donation where any citizen who has not refused is considered a donor. Opt-out legislative systems dramatically increase effective rates of consent for donation (the so-called default effect). Convincing the husband and the son for organ donation was not difficult at all, the family had discussed this earlier and Marie had expressed her desire to be an organ donor. However, the elation of getting the consent was short-lived as other challenges awaited us.
I and my colleague realized that it was the first such case in Delhi-NCR where a foreign national had agreed to organ donation. Upon further exploration we found no documented evidence of any other foreign national donating organs in the country. The Transplantation of Human Organs Act while giving clarity for live donation in case of foreign nationals, remains largely silent when it comes to deceased donation. The more we spoke to people, the more diverse opinions we got. Many people discouraged us saying that we could get into some sort of a trouble.
What does one do in such a case?
COURAGE – “Courage is not the absence of fear, but rather the judgment that something else is more important than fear.” – Ambrose Redmoon
My colleague and I were clear that we were doing the right thing and not flouting any law. We decided to be courageous and go forward with the donation. The family believed wholeheartedly in the goodness of their actions and we strongly felt that the family should be given the right to follow through their wishes. And we also believed that many recipients’ lives would be saved.
Together, (even though feeling isolated from everyone else) we charted a course of action. We documented the family’s consent and sent official information to the nearest police station along with the other documents like the Brain death certificate. We then, with the help of the friends of the family, got in touch with the French Embassy and informed them of the family’s wishes. We also sent written information to the Directorate General of Health Services (DGHS). We were confident and were not ‘seeking permission’ but only ‘informing’ them.
The donation took place and both the kidneys and the liver were successfully harvested. The family was grateful to us and proud of their decision. The Social Attaché and Counsellor for health, labour and social affairs invited us to the Embassy later that week to better understand organ donation in India and how they could support this work.
Going forward, this case will set the precedence for organ donation by foreign nationals in India. And it was only because we had the courage to make it happen.
Her husband Henri (who only speaks French) wrote to us after he returned to France:
“I was very moved reading your words & their inference. It was sad that I could not communicate with you but the expressions in your look & the sensitivity in your eyes always said it all. When our friends come over to the house I show them the pictures of our travels to India & the exceptionally framed photo presented (its formidable) by the Foundation with both of you & that was a special moment & will always be treasured.”
Case No 3
Aged 20 years, Resident of New Delhi
Declared Brain Dead on November 20, 2012 at Sir Gangaram Hospital, New Delhi
Sushant Kaushal’s was a young and tragic death in a road traffic accident. An engineering student, he was on his way to give his exams along with three other boys who studied with him. One of the boys died on the spot, two of them survived with injuries and Sushant was brought to the Gangaram hospital where he was later declared brain dead.
Sushant’s mother had died some years ago, and the father although distraught gave his consent for organ donation after we spoke to him.
It was my first ‘Medico Legal Case’ (MLC) and till then I had only heard how difficult such cases are and how the police in most cases neither understands organ donation nor cooperates to make things happen in time. I had also heard how difficult it was to get clearance from the forensic for organ retrieval. My apprehensions were compounded as the accident had taken place in Gurgaon which comes under a different jurisdiction than Delhi. This meant that we had to deal with two police stations, not to mention the forensic department. We began to get very worked up but very soon we realized how misplaced our fears were.
BELIEF – “It is never too late to give up your prejudices“- Henry David Thoreau
It had so happened, that a couple of months prior to this donation, we had conducted an awareness session with the personnel at the police station nearest to the hospital. We had also spent some time speaking to the SHO (Station House Officer) talking to him about our work and explaining to him the role that the police plays in MLC cases.
When we approached him, his support was unanimous and his team made the entire process so seamless and easy for us and the family. In fact they took pride in being part of the donation process. They approached the other police station in Gurgaon, got them to prepare the inquest in record time, prepared their own inquest, got an NOC (No Objection Certificate) from the forensic and coordinated the process with complete involvement, pride and enthusiasm. The retrieval took place in good time and Sushant’s liver, both the kidneys, heart, small intestine and both the corneas were transplanted to save many lives.
As Transplant Coordinators, we need to have a belief in not just the goodness of the cause but in the goodness of the people. We need to believe that people want to do the ‘right thing’ and that the world is full of those who want to make a difference. Most importantly, we cannot approach this work with cynicism and pre conceived notions.
Case No 4
Aged 51 years, Resident of Gurgaon (Haryana)
Was declared brain dead on June 29, 2013 at Medanta – The Medicity
When we were asked to counsel the family of Praveen Dhankar, we knew we had theodds stacked against us. His was a large extended family and many members were waiting for us, most of them males. They belonged to a rural background and it was unlikely they had ever heard of organ donation. We were unable, for the longest time, to identify the key decision maker/s. The spouse was not present for counseling every time we approached the family. The treating physicians who had been dealing with the family thus far were skeptical, and strongly believed that the family would never agree to organ donation.
Faced with such scenarios, very often it is tempting for the Transplant Coordinator to simply give up. And that is where belief and courage once again comes into play. And one more quality that becomes crucial is ‘resilience’.
RESILIENCE – “Defeat does not come when we lose, but when we give up on trying to succeed.”- Zim Barnes
We counselled the family for over a period of 26 hours before we could get them to consent to organ donation. And we spoke to over 15 family members at various points of time, even in the middle of the night. We dealt with issues of distrust towards the hospital. We handled queries on recipient information (they were insisting on knowing who would get the organs and we of course, could not divulge that information). One of the relatives wanted to explore the option of getting monetary benefits for the organs. Another relative who was a nurse wanted to be present when the Apnea test was being conducted in the ICU. Through it all, the additional challenge was to ensure the wife’s participation in the process as we definitely could not have gone ahead with the donation without her consent, no matter how many other relatives we convinced. Every time we explained the process to one member, a new one would arrive and we had to start afresh explaining brain death and organ donation. We answered the same questions over and over again. And that requires mental and emotional resilience.
As Transplant Coordinators, we have to firmly believe – “It’s a ‘Yes’ till we get a ‘No’.” We have to allow ample decision making time for the family members and patiently answer all their queries if we expect them to make an informed decision.
And most of all, we as Transplant Coordinators, can never give up.