The phone rings in the shrillness of the night. It’s loud and insistent. I wake up groggily and see its 3.00 am. A man speaks with desperation in his voice, “I got your number with great difficulty. My brother died an hour ago. He was only 56 but he always spoke about organ donation. It was something he wanted to do and we want to respect his wishes. I hope it’s not too late for us to donate his organs” I explain to him that his brother’s organs cannot be donated given the circumstances of his death. I go on further to explain to him about brain death. The family had never heard of brain death but had spoken about organ donation. He is disappointed but agrees for corneal donation. AIIMS is contacted and the corneas are retrieved.
Takes me back to another scenario three months back where I was called to counsel the grown up sons of a 69 year old widow. The elder son lived in the US and had flown down only upon getting the news of his mother’s death. I felt hopeful knowing that it would not be a completely ‘alien’ topic to discuss, at least not with the son who lived in US and perhaps, there would be more openness towards the idea of donating their mother’s organs. Sure enoughthe elder son had heard about brain death and organ donation. He had heard of UNOS and knew that US offered the option of becoming an organ donor by expressing it in one’s driving license. And yet, while we sat there talking, he seemed torn and unsure. While he agreed that it was the logical thing to do, this is what he had to say, “My mother and I never spoke about organ donation. I am not sure if this is what she would have liked for us to do.” I took the discussion a little further explaining to them that in the absence of awareness on the issue, families in India are given the right to a final decision. He agreed to the technicalities but maintained that he feels he does have the right to take a decision on behalf of his mother when they had never discussed it. “It would trouble my conscience all my life not knowing if she approved of my action/decision.” The family was unable to give consent for organ donation. They did not even agree for corneal donation.
For all of us who are working to give an impetus to the deceased organ donation program in India, we cannot lose sight of this very important learning underlying these two interactions. Our messaging and all our public awareness initiatives have to incorporate mechanisms that ensure that the family members of every registered donor is not just informed of his/her decision but is engaged in a dialogue on this issue. In fact, we should aim to work towards a system wherein the family of every organ and tissue donor is asked to confirm their donation decision.
As we see every day in our work (and as illustrated in the examples here) families that know each other’s donation decisions are more likely to uphold those decisions. However, we also know from our discussion with people that they find organ donation a difficult topic to raise with their family. Discussing the issue of death may be uncomfortable or even considered taboo, especially where young people are involved. How then we, as people promoting this cause, can make it easy for people to initiate this dialogue with their family?
Everyday situations can be used to start a discussion about important life issues including decisions about organ and tissue donation. These might include:
• Hearing about someone who has been a donor, needs a transplant or has had a transplant
• Watching donation and transplant stories on TV or see an article in the media
• When children have had the chance to discuss the topic at school
• Before starting extensive travel or going away from home to work
• When your family sits down together for a meal at a festival or a special occasion
• When your family is together at a family reunion or family celebration
• While making a will or getting life insurance
• Before leaving home for the first time as a young adult
• Celebrating an anniversary having a significant birthday
• While getting a check-up at the hospital
Once you have had the discussion with your family about each other’s donation decisions, these events can provide a good opportunity to repeat your decision to ensure they are remembered. To help initiate the discussion, the following conversation starters may be useful:
• I have just heard that my friend has registered to become an organ donor and I am thinking about registering too. What is your view about organ donation?
• I have just seen this brochure about organ donation. Did you know that one organ donor can save the lives of up to 10 people? I have the registration form here and am thinking of registering to become a donor myself.
• I just saw this terrible accident on the news and it got me thinking about organ donation. I did some research and saw that India really needs more organ and tissue donors and that one donor can transform the lives of more than 10 people.
• Organ donation can only occur in very specific circumstances in intensive care or in hospital accident and emergency departments. I think I will check it out some more and register to become a donor.
• I was at this group session where they spoke about taking the time to reflect on life and about giving. I thought about becoming an organ donor and decided I would look into it. It seems like a good thing to do.
• Did you know that just about all religions support organ and tissue donation? It looks like our religion is ok with organ and tissue donation too. I think it is a good thing to do and I may be able to save lives should I ever become an organ and tissue donor.
MOHAN Foundation has come up with a “Family Donor Card” which can occupy a proud place in the family sitting room. This not only gives a sense of pride but gives a collective ownership of the cause. So if you have decided to pledge your organs, don’t just tell us. Tell your family.