It is quite unusual to hear from a Transplant Coordinator to “Say No to Organ Donation”. However, when it comes to the “ifs and buts” in terms of consent for a family in considering organ donation, there is larger scope for the family to say no for organ donation. Getting consent for organ donation from a grieving family is considered as success of a coordinator. The consent of the f ami l y memb e rs s h o u l d b e UNCONDITIONAL and inclusive of understanding of the concept and process. This case study intends to throw light on the decision-making process by the relatives of potential brain dead donors.

Mr. Manikandan (name changed), a 52-year-old gentlemen was hit by a two wheeler while he was trying to cross the road on a highway. Mr. Manikandan was heading a department in a traditional automobile company in Tamil Nadu. Mr. Manikandan was one of the perfect examples of a middle-aged family man of an orthodox middle class South Indian family with huge responsibilities on his shoulder to shape the future of his son (Rakesh – name changed), an aspiring engineer and a school-going daughter. Mr. Manikandan had extremely good support from his colleagues when it was required. Immediately after the accident, he was taken to a nursing home for the first aid and then transferred to Chennai for further neurological care. He underwent an emergency craniotomy and then shifted to Intensive Care Unit for observation. He was closely monitored for his improvement but could not yield good results. On day 3 his prognosis was too poor and the same was explained to the family. Later in the evening he was clinically diagnosed to have nil brain functions and hence the intensivist decided to conduct apnoea test to confirm the same. The grief counsellor and transplant coordinator accompanied the intensivist in breaking the news to the family. The near relatives and couple of colleagues of Mr. Manikandan were present during the counselling session and as expected the family was shattered to know the current status. The family was given enough time to ventilate and when found comfortable to discuss the possible options left with the family, the concept of organ donation was introduced as one of the options, but not as the first one though. The next of kin requested for time to decide on this as they wished to discuss in detail to take common consensus from family and friends.

Most of the family members were graduates and hence had some information on brain death, but did not have clarity on the process flow followed in brain death and organ donation. They had a lot of misconceptions about the process that added confusion in making a decision on donating. This led to proposing conditions at the later stage of the organ donation process.

This family belonged to a particular community that is well known for orthodox customs and traditions that does not encourage organ donations (due to the belief that the organs would be missing at rebirth). This was raised by a couple of relatives who were present in the initial counselling session. The transplant coordinator clarified the myth. Thereafter, one of the conditions from the near relatives was that if they donated, the information should not be disclosed as the senior members would not be happy about the decision for organ donation. The transplant coordinators said that this was not possible since this could give scope to build distrust on a private hospital and accuse it of working for a vested interest.

Prior to the second set of brain death testing , family members along with a couple of family friends wanted to have clarity on the next plans. The near relatives especially the wife (Mrs.Sangeetha) and the son in principle were not against organ donations, but were reluctant to take a firm decision as it was more of a socio-cultural and religious beliefs of a typical orthodox family and not individual decision. Hence the wife of the deceased approached the transplant coordinator to understand the process involved if she consented for organ donation. After knowing the process and the purpose in terms of giving new lease of life to someone who is ailing from end stage organ failure, Mrs. Sangeetha and Rakesh expressed their willingness to donate their dear one’s organs. However the consent did not sound confident from both of them and the reason is quite obvious. This is nothing but the concern that both of them had about what will the rest of the family members especially the in-laws back home and the friends/colleagues of Mr. Manikandan would respond to this. Hence the next round of counselling was organised to take the wishes of the near relatives for a common consensus. The initial outcome was a mixed opinion since the counselling session comprised as many as 15 members. The session ended with the conclusion on consenting (orally) for organ donation but the entire group unanimously agreed to wait until the second set of tests for Brain Death Declaration to confirm the consent status as one among the group raised the concerns on the death status (Brain Death Confirmation).

Hence as a matter of protocol, the information (on potential deceased organ donor) was passed on to the organ allocation authority (TRANSTAN) to identify potential recipients. As a donor hospital, the MLC (Medico-Legal Case) process was initiated with the police intimation and requesting the forensic consultant for post-mortem formalities.

The general difference between consenting and refusing for organ donation can be due to multiple factors. However, clarity on the consent (unconditionally) plays a major role in taking the process to completion of successful donation.

The family requested for clarifications about the process on more than five occasions. Each time they visited the transplant coordinator; the family made a request (because they consented to donate), the coordinator had to turn down. Some of the queries were, we would like to know to whom these organs would be transplanted, will this go to poor patient or to a rich person, how can you ensure that these organs will not be commercialised, Don’t inform about this (donation) to some of the other family members if they ask you, this message should not go media at any cost etc. In the meantime, the ICU team was ready to perform the second set of tests. After the second apnoea test confirmed that Mr. Manikandan was declared brain dead, the family (this time not friends or colleagues were available) was oriented on the status and organ donation process was in progress. More than half an hour later one of family friends (little senior though) visited the ICU to know the current status and got upset to know the Mr. Manikandan was already declared Brain Dead and that he was unaware of this. He was one among the few friends who was not so keen on the organ donation process. Taking this as an advantage, he started creating chaos in the ICU, raising his voice against the ICU consultants, and misleading the family who wanted to donate organs. He accused the coordinators of not keeping him in the loop on updating the status and that the hospital was trying to do some sort of illegal allocation of organs. He then brought all the requests that the family had made earlier as demands and later as a condition for donation. The family was a little worried as they did not want to go against someone who had been very supportive all these days and had a key role in getting the benefits from Mr. Manikandan’s office. Hence Mrs. Sangeetha and Rakesh too had to join him in raising many irrelevant questions just to satisfy the family friend. The ICU consultant started panicking as the situation was going beyond control. Hence the transplant coordinator had to intervene and call the entire family and friends/colleagues to the counselling room and had to halt the organ donation process and had to firmly say No to Organ Donation. This was something very unusual from the transplant coordinator, as the entire group in the counselling room was expecting that the coordinator would pacify the family but instead he went the other way around. The coordinator made it clear that there is no scope for any conditional donation and there is nothing to hide or manipulate in the organ allocation process as this programme is a transparent one and is being monitored by an independent government body.

There was absolute silence in the counselling room as most of them were aware that one person had made lot of chaos in this process. The transplant coordinator once again stressed that this is a noble cause in saving lives and an act of making the donor as hero. Hence let the decision to consent for donation be altruistic, unconditional and without any second thoughts among the family. The family was advised to take other options apart from organ donation that was discussed during the first counselling session. The family immediately realised their error and regretted the same. However, the transplant coordinator had to end the session there and asked them to wait for further instruction from the consultants. The key family members (along with the one who created chaos) made frequent requests to ICU consultants and to the transplant coordinator insisting on organ  donation. After the detailed discussion with all the family members on the protocol and process, the deceased donor organ donation process was restarted.

At times you have to say No to Organ Donation ...