Building Trust: Living Donors & Donor Families – An Advocacy Workshop & Panel Discussion’

Updated on Tuesday, April 2, 2024
  • On March 2, 2024, MOHAN Foundation organized an Advocacy Workshop titled ‘Building Trust’ at The Comfort Inn Heritage Hotel, Byculla (Mumbai), in partnership with ROTTO-SOTTO Mumbai. It wasattended by 45 participants, mainly Transplant Coordinators and a few transplant physicians.The theme of the workshop was focusing on enhancing public trust in the organ donation andtransplantation programme, specifically on Living Donors and Deceased Donor families. The program heavily relies on the goodness of living donors and the donor families who put themselves and their grief aside, to give consent to donating their own / their loved ones’ organs, altruistically. Hence theneed to constantly look at trust enhancing and therefore various stakeholders were brought together atthis forum and two main topics were taken up -

    Session 1: Reviewing current Practices in Deceased Organ donation in Medico Legal Cases (MLC) andissuing revised guidelines by Public Health Department, for smoothening the process to ensure timelyhanding over donor’s body to their bereaved families who, inspite of their grief, take the difficultdecision donate their loved one’s organs, thus saving a few other lives.This session started with Dr Sunil Shroff, Trustee - MOHAN Foundation, introducing the best practices inother States such as Tamil Nadu, etc. Dr Yogender Bansal, HOD Forensics – PGI Chandigarh spoke onRole clarity between Police and Forensics and how the Transplantation of Human Organs Act, 1994 andsubsequent rules left it ambiguous on who the Competent Authority under Section 6 of the Act.The presentations were followed by Panel Discussion that was moderated by Dr Sunil Shroff andfollowing were the invited experts –a. Mr. Anil Paraskar, Addl. Commissioner of Police, Mumbaib. Dr Yogender Bansal, HOD Forensics, PGIMER Chandigarhc. Dr Rajesh Dere, HOD Forensics, Sion Hospital, Mumbaid. Dr Sujata Patwardhan, ROTTO SOTTO Mumbaie. Mr Aniruddha Kulkarni, Senior Transplant Coordinatorf. Dr Rekha Barot, Senior Transplant CoordinatorThe panel did a deep dive on Maharashtra’s current practices, and it came out that the MaharashtraPolice were quite unnecessarily being forced to issue a ‘No Objection Letter’ thereby giving theirapproval to retrieval of organs, when in fact the Forensics are the Competent authorities to give theirapproval to retrieval of organs. It was concluded that the panel will take up the responsibility ofproposing changes to the Public Health Department and to the Police Department to enact revisedguidelines. This would ensure faster handing over of the donor’s body to the families, thereby notcausing them any further pain and anxiety associated with delays.

    Session 2: Need for mandating the appointment of ‘an Independent Living Donor Advocate’ by the State Governments and Hospitals, thereby providing for donor care by someone not involved in recipient care,thus safeguarding the donor and ensuring they are given the opportunity to make informed decisions,without any pressure or coercion in the truest sense.This session began with an introduction to the concept of an ‘Independent Living Donor Advocate’ by DrSunil Shroff. This was followed by presentations by UK and US healthcare professionals, who spokeabout their respective practices. UK model was shared by Ms. Jen Lumsdaine (Living Donation, Scotland)and the US model was shared by Ms Dawn Larson and Ms Paige Anderson – both working as ILDA(Independent Living Donor Advocate) in M Health Fairview Hospital, Minnesota.This was followed by a Panel Discussion moderated by Ms. Jaya Jairam, with the following invitedpanelist experts –a) Dr Pravin Shingare, Former Director DMER,b) Ms. Sudha Bhamidipati, Caregiver to Liver recipientc) Mr Samiir Halady, Kidney recipientd) Dr Ravi Mohanka, HPB & Liver Transplant Surgeone) Dr Geeta Seth, Nephrologistf) Ms Bhavana Shah – Senior Transplant Coordinatorg) Mr Ciju Nair – Senior Transplant CoordinatorMs. Jaya Jairam set the tone for the discussions, while highlighting that India does a very high number oftransplantations from living donors and hence it is imperative that such donors are safe-guarded andtheir rights protected. The following questions were raised -Q to Ms Sudha Bhamidipati: While you and your husband were informed about his liver failure andtransplant options, you felt pressured by the entire system, to donate a part of your liver to save himand that you were made to feel guilty for registering him on a cadaver organ waiting list. Please, openlyshare.Q to Dr Ravi Mohanka: Do you feel we require independent Living donor advocates in our country? IfNo, you may be aware that this is a requirement by JCI accreditation? If Yes, do you believe the currentprogram is skewed towards recipient care and can sometimes overlook some of the donor risks to savethe recipient, as we do not have a robust deceased donation program?Q to Ciju Nair: Please share your experiences wherein a donor was rejected by an Independent LivingDonor Advocate.Q to Samiir Halady: As a kidney recipient who received kidney from your mother, and as someoneconnected with many recipients, do you believe that having an ILDA evaluate the donor would helpenhance trust in the program, or will it be perceived at as a hindrance and a delay causing factor?Q to Dr Pravin Shingare: Sir, in your vast experience as a State Authorization Committee member, shouldhospitals be mandated to appoint an ILDA whose primary objective is donor care and is not directlyinvolved in recipient care?Q to Dr Ravi Mohanka: There may be arguments that Psychiatrist clearance is being sought and that thetransplant teams counsel the donor to enable an informed consent. With large no. of Transplant centresmushrooming across the country, including tier 2 cities, many do live donor transplants. Can we say in
    the truest sense that the current processes are entirely free of programmatic pressures to increasevolume?Q to Ms Bhavana Shah – Have you come across cases where donors abandoned or ghosted and thetransplant had to be cancelled? Don’t you think such cases result in such a waste of time, money, energyand such episodes cause emotional trauma and breakdowns in families.Q to Dr Geeta Seth: From a Public Hospital perspective, you must be handling large volumes of patientsand most of them might be uneducated. Doesn’t it require an extra mile to educate, counsel and enableinformed consent from the living donors? How do you think we can implement such ILDA systems inPublic Hospitals?Q to Dr Pravin Shingare: Do you believe that evaluations by ILDA can help the State AuthorizationCommittee in taking decisions more objectively?The discussions were deeply engaging and brought out the different points of view of the stakeholdersin the program. It was felt that such advocacy workshops must also be taken up at an All-India level fromadvocacy to include the changes in the Central Act, and more research and publications might help ingetting the law passed.We thank SBI Foundation for supporting this event. We are grateful to ROTTO-SOTTO Mumbai for their partnership.

    Source-Jaya Jairam
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