Starting with this issue of the Indian Transplant Newsletter, is a series of case studies on 'Difficult Donations.' The situations that will be presented in this series are those where organ donations seemed an impossibility, and yet have happened. The first case study 'A Change of Heart' is by Ms. Pallavi Kumar, Executive Director – Delhi NCR, MOHAN Foundation.

“No, we do not wish to donate the organs anymore. We would like the body to be handed back to us for the final rites. We have gone through enough mental turmoil. This is our final decision”

I was surprised to hear these words as I walked into the counseling room. Just a few hours ago I had received a call from the hospital saying that the family had consented for organ donation and were in fact quite motivated to do so. However, it being a case of suicide, the hospital was expecting medico-legal complications and sought the help of MOHAN Foundation in easing out the same.

The words, spoken quietly and with sadness by the sister of the deceased, Madhu (name changed), had a very definitive tone to them. I sat silently as the treating physician explained to them the various formalities of discharging a ventilated patient even if brain dead. He said that they would stop any active support and initiate discharge formalities. He promised to keep them informed. Something didn't quite feel right. I wasn't willing to give up so easily. Here was a family who had brought up organ donation on their own and had wholeheartedly given their consent for the same given the possibility just the previous evening. What misgivings had changed their mind?

I introduced myself, the Foundation and our role in such situations. I asked the family the reasons for the change in their decision considering they had earlier agreed. Madhu's sister shared that the delay in the entire process had agitated their mother who felt that Madhu had already undergone a lot of suffering and the family needed a closure. I explained to the family that Madhu had shown some breathing efforts during the day and the doctors had needed more time to observe and be absolutely sure before they conducted the tests to determine death. After some more discussion with the family members – the sister, the brother-in-law, the ex-husband - I was able to help the family relook at their decision. Honestly, it didn't take much convincing as the family was already motivated. They were just tired and confused with the delay and the absence of adequate communication from the treating team. It wasn't really difficult to change their minds.

Since the mother had left the hospital, it was decided that the brother-in-law would call and speak to her again to give her consent for organ donation. However, the mother did not respond favorably to the call and refused to discuss the matter further.

It was collectively decided to close any further discussion on the subject. I offered the family any help that they needed. The family seemed confused on how to deal with the forensic team and the police. I called the Forensic doctor on their behalf and requested support in easing matters for the family. I also shared with them my number in case they had any issues at the time of discharge or at the mortuary. I thought I would sit with the family for a while before leaving the hospital as they seemed lost and grief-stricken. We got talking about organ donation and about other families who had taken this decision in the past.

Meanwhile I discovered that one of the potential recipients was a 10 year old girl who was waiting to get a combined kidney liver transplant. I am usually not very forceful once the family has refused. We have been trained to respect the family's decision and withdraw with grace but somehow with this family my heart wasn't fully convinced. And the news of the young recipient once again built up my resolve.

I sought permission from the family to speak to the mother on the phone to once again help her reconsider her decision. I explained to her the reasons for the delay that had taken place in the ICU earlier in the day. And then I earnestly requested her to reconsider her decision and emphasized how a single 'yes' from the family could save so many lives. I shared with her how someone's young daughter was waiting for a combined kidney-liver transplant and how so many hopes pinned on her response. I also urged her to discuss the same with the other family members and how all of them were keen to take this brave decision despite their loss, to save other lives. However she changed her mind and gave her consent right there over the phone and asked me to go ahead with the formalities. She even thanked me for helping her see more clearly and preventing her from making an incorrect decision.

The hospital contacted the nearest police station as it was a Medico-Legal Case. They were asked to conduct the inquest into the same. I contacted the Forensic expert who ensured his full support in the case. Permission was sought from him for the retrieval of the kidneys and liver.

All measures were taken to ensure that the donor's family did not face any procedural delays in the release of the body. Documents like discharge summary and death certificate were handed over to the relatives well in time. Adequate transport arrangement was made to shift the donor's body to the mortuary. I accompanied the family along with the body to the mortuary in Civil Hospital. Despite it being a Sunday, the entire forensic team and the investigating officer were very supportive and the autopsy was conducted in a timely manner.

Three people underwent a transplant as a result of the family's change of heart. At the prayer meeting, the mother held my hand and thanked us profusely for helping her see the larger picture. She said she would cherish the felicitation certificate that we handed over all her life. And the 10 year old underwent a successful combined kidney liver transplant.