By Pankhuri Kumar
We are in conversation with a woman who has made it her mission to drive an organ donation revolution in India. This extraordinary influencer, with years of leadership experience under her belt has generously taken time out to talk about her work, organ donation, her role models and the books that she thinks our readers should read!
Greetings Ms Pallavi Kumar! Please tell the readers of Indspire Me a little bit about yourself.
Hi, I am Pallavi Kumar. I am the Executive Director for the NCR office of MOHAN Foundation (a 20 year old organisation working in the area of organ donation) In fact, I had the privilege of starting the Delhi office in the year 2011.
What kind of work does the MOHAN Foundation do?
MOHAN (Multi Organ Harvesting Aid Network) Foundation is one of the oldest NGOs working in the area of Organ Donation in India and has been a torch bearer in many ways. Started in 1997 in Chennai, it started advocating this very difficult cause at a time when no one in the country was talking about it and the environment was fairly hostile towards this highly taboo topic.
Its unique mission is to ensure that every Indian that is suffering from end stage organ failure, be provided with the gift of a new lease of quality life through a lifesaving organ.
To this end, the Foundation is engaged in creating public awareness on the subject, networking with hospitals to enable donations to occur, training medical and para medical professionals and liaising with Government bodies (at the centre and at state levels) to pass favorable legislations that augment Organ donation.
The Organization has been training a special cadre of professionals called Transplant Coordinators who do the unenviable job of counseling bereaved families to encourage them to donate the organs of their deceased loved one and save other lives.
How can organ donation help people?
Organ donation is the donation of human organs or tissues from a living or dead person to a living recipient in need of a transplantation. In India, lakhs of people are waiting for an organ transplant. Every day, many end stage organ disease patients die waiting for an organ transplant.
More people are added to the waiting list than the number of people who are lucky to actually receive the organ donation.
There is an urgent need to bridge this ever widening gap between demand and availability. Moreover, Donation of an organ or tissue provides an unparalleled opportunity to give someone a second chance of life. Your donation is not only impacting the life of one person or family, but it is of overall help for the society as a whole. Most families who have made this brave decision have expressed that it helped in their grieving and healing process.
What are some of the challenges of promoting organ donation in India?
- Absence of institutional mechanisms to approach the families of brain dead individuals: The diagnosis of brain death & subsequent donation is possible only in intensive care units (ICU’s) which have the facilities for keeping a brain-dead patient’s organs working with mechanical ventilation, cardiac support & intensive monitoring. Such ICUs are few & are available only in big hospitals in major cities. They are often overloaded and understaffed and lack a central command structure. In this situation, the identification of brain death and requesting consent is often given low priority and brain-dead patients are treated with “benign neglect”. But if such patients become donors, they require the same attention as any other patient to keep the organs viable till they are removed. This requires a major attitudinal change and is resented by an already overburdened staff.
- Consent system– In India “Informed consent” is practiced, where close family members agree to donate organs after brain death has been certified. However, “family consent” is a vague term, and, unlike in some countries, no hierarchy of relatives has been specified in the rules. There have been cases of differing views within the donor family. The ethical question here is: whether unanimity in concurrence is to be sought, and if not, whether one family member’s views can override others.
- Cultural, religious and social beliefs and lack of public awareness prevents families from giving consent.
What suggestions would you give our government bodies’ political leaderships to really fast track the organ donation culture in our country?
- Some attempts have to be made by the national government to standardize procedures and create mechanisms for identification of brain death and requesting consent together with a national organ registry and distribution system.
- Promotion and use of donor cards, option to be an organ donor in driving license.
- The idea of incentivising donor families has also been discussed in the public domain and transplant circles in India. The incentives discussed range from simple waivers of the donor’s hospitalisation costs to various proposals to support the donor’s family members, including preference in jobs, free lifelong railway passes, and support for children’s education. Since the recipient and the hospital performing the transplant are beneficiaries of the donation, it has been argued that there is no reason why the act should not be acknowledged and compensated in some form.
- To bring together religious gurus and leaders, and spread the message that no religion bars one from donation organs.
Tell us about a project or accomplishment that you consider to be the most significant in your career.
Every time a family decides to give consent to organ donation after I have spoken to them and given them this choice, I see it as a big accomplishment and a significant moment in my life.
My work is life-saving work. Every time a family of a deceased person comes forward and gives the nod for organ donation, multiple other lives can be nursed back to health. A single “yes” from the loved ones of the person who died, can save so many lives. That is how phenomenal this work is. After going through so many ‘no’s, that one single ‘yes’ makes it all worthwhile! That is the beauty of this whole work.
The very fact that my choice of career enables me to help families make choices that can save many lives is what drives me.
It’s not just about bringing a smile to someone’s face but the fact that I am given the opportunity to exercise skills that have an impact and can bring about a meaningful change.
You are surely a role model for many and we would love to know whether there is any one to whom you look up to?
I look up to all those people who want to make a difference to society in a big or small way. I am inspired by everyday acts of courage and compassion that I see or read about in my daily life.
Reading plays an important role in developing a person’s thought process. Do share with us the books/authors that you find inspiring.
I am a voracious reader and despite a hectic schedule I always push myself to read. In fact, I had taken a ’50books2017′ reading challenge (as part of an online reading group) earlier this year and have managed to read close to 30 books so far. I have also begun the exercise of reviewing the books I read in order to help others decide whether they would like to read them or not.
Some of the good books that I read this year are:
- The Palace of Illusions by Chitra Divakaruni
- Em and the big Hoom by Jerry Pinto
- When breath becomes air by Paul Kalanithi
- The Ministry of Utmost Happiness by Arundhati Roy
- Cockold by Kiran Nagarkar
And many more…
Please share a message with the readers of Indspire Me. What should be their top priority while choosing a career or a profession for themselves?
When I was young, I too had many choices as young people do today but my singular driving force was the desire to make the kind of positive impact that my chosen career allows me to. I have always wanted to be in a place where I could make a difference to the lives of people or that my actions should have an impact on alleviating suffering of some kind.
It was not an easy choice to make and it has not been an easy path to follow
I remember my father was understandably disapproving of my choice. He felt that social work was something housewives did in their spare time, that it was not a career path. But I had the courage of conviction to pursue this.
It is very important to have such courage because if you have it, it gives you strength to pursue what may appear to be a difficult or a non-conventional path, because ultimately your conviction gives you the passion and drive to excel and to persevere.
About the Interviewer
Pankhuri Kumar is a student of Economics (Honours) at Hindu College, University of Delhi. She is a big believer in the power of positivity and plans to do her MBA in the future. In her free time, Pankhuri can be found checking out new places to eat and shop at.
We would like you or someone from your organisation to come to our church and give us a talk on organ donation. I am Sheila Paul from Versova Bombay. Pl coukd you get in touch with me on 9821050186 n let me know how this can be arranged. Thank you