Indian Transplant Newsletter. Vol.17 Issue No.: 52 November 2017 - February 2018
Every Accomplishment Starts With the decision to try
Indian Transplant Newsletter.
Vol.17 Issue No.: 52 November 2017 - February 2018
Print ISSN 0972 - 1568
“How am I going to restart organ donation conversation with this family” was the first thought that struck me when I saw the grief-stricken family of late Mrs. Chandra (name changed).
My journey in this programme started when I joined MOHAN Foundation in 2010 as a transplant coordinator. Myself and two of my colleagues were deputed to one of the government hospitals in Chennai as grief counsellors cum transplant coordinators. We were involved in counselling the grieving families and facilitating the donation process in the hospital. Having worked as a transplant coordinator for a few years in a government hospital, I was then promoted as Programme Manager. As Programme Manager, I only oversee these transplant coordinators placed in various government hospitals but do not really involve myself in any of the painstaking ground work.
It was a Friday afternoon and I was getting ready for an official meeting. As I was grabbing my papers, I heard the beeping sound from my phone. That was a message from my team from one of the government hospitals stating that there was a young female patient identified as brain stem dead in the hospital.
Since I knew that the 1st Apnoea test would be performed anytime and the family will be approached for organ donation, I was diligently checking my phone in between the meeting, just to be in the know of updates. At around 6.30 pm, there was a message in my inbox stating that ‘Family was not willing for organ donation’. I didn’t know why but I had a thought that maybe after the meeting I should visit the hospital to get the complete picture. I rang my team and informed them I will be coming to the hospital and next 30 minutes or so I was there.
I sat with my team and requested them to brief me the family conversation that has happened so far. The story unfolds as follows. Mrs. Chandra, a loving wife and a mother of two was only 27 years old. On that fateful day, the couple was returning home on their two-wheeler after visiting their relatives. Mrs. Chandra, the pillion rider fell off the bike as the two-wheeler hit the speed bump and sustained severe head injury. After two days of intensive treatment, Mrs. Chandra was declared brain stem dead.
When I further probed any particular reason why the family said no for organ donation, the team said ‘No particular reason.’ Then I checked about the relatives present in the hospital – it was almost everyone in the family including her husband, mother, brother and other close relatives. However, they said the husband walked out of the ICU as soon as the family was informed about the bad news. The team waited for some time for him to come back, but he didn’t. Since there was not much time left, the team went ahead and approached the family for organ donation. The family members patiently listened to the entire conversation and said that they would get back after discussing with her husband, Mr. Karthikeyan (name changed). Since Mr. Karthikeyan refused to come up to the ICU, Mrs. Chandra’s brother and cousins went and spoke to him about organ donation. Mr. Karthikeyan’s reply was a firm ‘No’ and the family members conveyed the same to the grief counsellors. They also requested the counsellors not to disturb them.
This was the frame that I got from my team. I sat down for some time and recalled the conversation path that my team had so far with the family. The following were the two concerns that made me decide to go back to the family and continue the conversation.
- The family’s immediate response for organ donation was not ‘No’ – There may be still a chance for them to reconsider their decision, if they could persuade Mr. Karthikeyan.
- Is there any internal conflict that Mr. Karthikeyan is going through which is probably blocking him from taking a major decision?
I checked with my team whether it is alright if I make another attempt with the family. With their acceptance, we went back to the family and restarted our conversation with a 'Sorry'. 'I expressed my genuine concern to the family and I told them that my intention to come back to them is not really about their decision; but to care for their psychological needs at that sheer grieving moment.
A lot of conversation happened not only with the family but also with the extended relatives to make sure that they understood the concept of brain stem death and organ donation. In fact they mentioned that 'donation' was not something new for them as they had donated Mrs. Chandra's father's corneas a few years back.
On further probing as to why they denied consent for organ donation, her brother said 'our life is never going to be the same or whole again; neither of us is able to think anything beyond'. With a lot of empathy, we echoed the family's statement “We understand that your life is never going to be whole again. But do you think that you can still do something to make Mrs. Chandra's life whole.” We knew that this might not reduce their sorrow, yet could provoke their thoughts to find a meaningful way to say goodbye to Mrs. Chandra. After a minute-long silence, Mrs. Chandra's cousin brother stepped in and said “We will try and bring her husband here. Could you speak with him about this?”
With the promise that we would not make Mr. Karthikeyan burdened with decision making, we were waiting for him in the corridor. It was 11.30 in the night and the unit was absolutely silent. I could feel butterflies in my stomach as I was completely clueless as to what Mr. Karthikeyan was going through. Every second seemed to be an hour and every little noise sounded like footsteps that were approaching us.
To end our waiting Mr. Karthikeyan arrived at the ICU. After a brief introduction, the conversation was again started but this time I decided to go back to the accident history. Why because, we clarified that Mr. Karthikeyan was not only primed about his wife's poor prognosis often, but also well explained about brain stem death. Hence I believed that the issue was not anywhere around understanding her condition or not accepting her death.
Finally Mr. Karthikeyan started talking about that fateful evening. After visiting their relatives, the couple was getting ready to leave but the relatives told them to stay back as it was getting dark. Mrs. Chandra who didn't know what to do, looked at her husband. Mr. Karthikeyan was determined to leave and told to her “Let's go, Chandra.” Mrs. Chandra simply listened to him and the couple left the place.
“Neither I listened to my relatives, nor I asked her what she wanted to do. If I had not decided to leave, she would not have suffered.” As he was saying that, he started weeping and tears started rolling down his cheeks. He covered his face with a handkerchief and leaned on the wall.
Yes, 'guilty of decision making', was the inner conflict that Mr. Karthikeyan was struggling with. His posture was an open invite for anyone that he wanted somebody to support him. As counsellors, we were left to address many issues - his guilt, grief and facilitating the entire family to take an important decision; and that was immensely challenging.
A lot of positive affirmation was given to him to help him to handle his guilt feeling. He was also made aware that by not taking a decision now, he might again experience the same because the other members in the family were positive about organ donation.
He then went on to discuss with the rest of the family members about donating Mrs. Chandra's organs. After an hour's discussion within the family and clarifying their doubts with us about the procedure, the family took a uniform decision to donate Mrs. Chandra's organs as well as tissues.
There was a major delay in performing the 2nd Apnoea test due to her electrolyte imbalance. But the family was extremely supportive; in fact they told us not to worry about the delay. By reading our nervousness, one of her cousins came to us and said “We don't see this as a delay as long as a precious life could be saved through her donation.”
Mrs. Chandra's kidneys, liver, corneas and heart valves were donated on 18th June 2016.
Yet another remarkable family; yet another learning experience.
- Rajiv Gandhi Government General Hospital (RGGGH), Chennai
- Team of grief counsellors cum transplant coordinators from MOHAN Foundation deputed to the RGGGH to facilitate deceased organ donation
- Sujatha Suriyamoorthi
MIS & Programme Manager
- Copyright © 2023. Published by MOHAN Foundation
- Keywords: difficult donation series