Ms Pallavi Kumar, Executive Director (MF) and Ms Arati Gokhale, Convenor ZTCC (Zonal Transplant Coordination Committee) Pune underwent Gift of Life Institute’s (GOLI) Mini Fellowship in Organ Donation from October 15-26, 2018 in USA. This fellowship was facilitated under the auspices of the International Cooperation Agreement signed between Gift of Life Institute, Philadelphia and MOHAN Foundation in 2015. One of the objectives of the agreement was facilitating the enhancement of the deceased donation and transplantation programme in India through education and training of donation and transplantation professionals in the country. The Mini Fellowship was sponsored through an educational grant from MOHAN, USA, Inc. which is a 501(c) (3) registered non-profit organization that was formed to increase awareness about organ shortage and promote transparency and ethical organ transplantation in India and the rest of the world (www.mohanusa.org)
Gift of Life Donor Program, Philadelphia is the largest non-profit Organ Procurement Organization (OPO) in USA that serves eastern Pennsylvania, southern New Jersey and Delaware. It facilitated 565 organ donations in 2017 that resulted in 1,546 transplants (50 donors per million population) – the highest volume in the U.S.
There are 58 OPO’s in US, 52 of which are independent non-profit organisations. They are separate from Transplant Centres and serve many of them. They have formal agreements with all hospitals in the service area to coordinate the donation process. All organs, however, are allocated through UNOS (United Network for Organ Sharing)
The Mini Fellowship comprised didactic sessions, observational learning, workshops and special events.
Gift of Life Donor Program manages every facet of the donation process, coordinates the recovery of organs and tissues, and allocates the organs to suitable recipients as per UNOS (United Network for Organ Sharing) allocation policies. All these aspects were covered by the experts during the following didactic sessions.
• History of organ donation in US and the Gift of Life Donor Program –Overview (along with a tour)
• Family Communication Models
• Transplant Information Center and Organ Allocation
• Family Support Services
• Donation and Transplant Analytics (DATA)
• Transplant Pregnancy Registry International
2 Day Workshop on Family Empowerment through Effective Advocacy: Averting and Overcoming Obstacles to Donation
Pallavi and Arati attended a 2 day Workshop on Dual Advocacy by Patti Mulvania at the Gift of Life Institute. The workshop covered the following topics:
- Before the Donation Conversation: Setting it Up to Go Well
- When a Child Dies – The Unique impact of Paediatric loss on Hospital Staff and Donation Professionals
The workshop consisted of many individual and group exercises and role plays that offered the participants an opportunity to understand situations better and plan their own responses.
Donation Champion Learning Session:
Pallavi and Arati attended a Donation Champion Learning Session titled ‘Supporting Families and Sharing Best Practices’. It was a day long workshop at the Lankenau Medical Center that addressed critical care staff on the following aspects:
- Role of the Donation Champion in improving organ donation outcomes
- Communicating best demonstrated practices: The optimal process
- Determination of and communication surrounding brain death,
- Clinical Evaluation and Management of the potential organ donor
- Effective approach to optimizing Donation opportunities
A panel discussion on “Patient and Family Perspectives” was also a part of the workshop. The panel comprised a donor family member, a double lung transplant recipient, a potential recipient awaiting kidney transplant and an expert from Family Support Services, Gift of Life Donor Program. This gave the audience an understanding of the perspective of a donor family, the trials of awaiting a transplant and new lease of life with the help of a gifted organ
Pallavi and Arati spent a day at the Transplant Information Centre (TIC) listening in to calls from hospitals regarding potential donors and counselling for tissue donation. They also observed how an In-House Coordinator manages shifting of organs from other states and does allocation as per the UNOS guidelines.
The TIC works 24X7. Headed by a Director, it has a manager and 4 TIC leaders. Each TIC leader supervises 5 In-House Coordinators (IHC) who in turn train one IHC trainee each.
The TIC gets a referral within 1 hour of patient death or when the death certificate is completed and is provided with the basic information such as patient demographics, date and time of death, cause of death etc. The IHC, in order to check for the medical suitability of the deceased person, will request for additional medical and other information.
The main goal is for Gift of Life to speak with the family and offer the opportunity of tissue donation while the family is still at the hospital. They move to a private room/space in order to have this conversation. If the family has already left the hospital, IHC will request for other contact details to get in touch with the family.
The Gift of Life arranges for use of an OR, or transportation of the body to Gift of Life for the recovery of the donated tissue
Visit to Einstein Medical Center:
A visit to Einstein Medical Center was organized during the fellowship. This gave them the opportunity to interact with the liver and kidney coordinators and to understand the pre transplant counselling and post-transplant follow-up with kidney and liver recipients. They also had the opportunity to observe the multi-disciplinary team meeting on listing patients on the liver waitlist registry.
During the visit to the hospital, they were able to spend time at the HLA lab as well.
Visit to Musculoskeletal Transplant Foundation:
The fellowship offered them the unique opportunity of visiting the Musculoskeletal Transplant Foundation (MTF) located in Jessup, Pennsylvania. Mr. Barry Demanski, Associate Director- Operations took them on a tour of the entire facility. There was so much knowledge to be gained and it was fascinating to learn about the exacting standards set to ensure the quality of tissue graft.
About MTF: MTF is a not-for-profit service organization and is the largest tissue bank in the world that is dedicated to helping people in need of tissue by providing them high quality grafts. MTF works on the following three guiding principles
• Make more safe tissue available to patients by building strong relationships with leading organ and tissue procurement organizations.
• Provide the highest quality tissue by having the most stringent standards.
• Advance the science of tissue transplantation through research and development.
Pallavi and Arati also had the opportunity to interact with Mr Domenick Buonocore (Vice President, Processing), Angela Mc Cord (Manager, Donor Scheduling) and Laura Maconeghy (Manager Distribution/Inventory Control)
Life and Legacy – Honoring Organ and Tissue Donors and Their Families
Pallavi and Arati also had an opportunity to attend “Life and Legacy” - an event held to honor Organ, Tissue and Cornea Donors and their families for their generous gifts. The event was held at Blackwood, New Jersey on October 21, 2018.
During the ceremony, the families were presented with a ‘Gift of Life Donor Medal’ (a medal which was established to honor the gift that their loved ones’ had given) and ‘Wrapped in Hugs’ wrap (to make the donor families feel wrapped in gratitude and love for their generous gifts). Following that there was a photo tribute during which a photo collage of the organ and tissue donors was shown. During the photo tribute, heart-warming and soothing music was played by harpist Laura Enuco.
In addition, there was also a ‘Quilt Pinning’ section. The donor families were encouraged to bring a quilt square in memory of their loved and those quilt squares were pinned on the ‘Threads of Love’ Memorial Quilt by the donor families.
There was a heart-warming sharing by a tissue recipient, a cornea recipient and a liver recipient as to how the gift of a tissue or an organ had transformed their life. A donor family member also shared his experience of gifting his daughters tissues and organs and what the act meant to their family.
Visit to Gift of Life Family House
Pallavi and Arati visited the Gift of Life Family House, a unique initiative of Gift of Life Donor Program. The family house serves as a "home away from home" for transplant patients and their families by providing lodging and other support services at an affordable price.
“Home Cook Heroes Program” was a distinct approach of Family House to engage volunteers. With a true sense of generosity, these volunteers come and prepare meals for transplant patients and families at the Family House every day.
Mr Howard M. Nathan, President and CEO, Gift of Life Donor Program, Ms. Theresa Daly, Director, Gift of Life Institute, the faculty and staff made the Mini Fellowship a warm and enriching experience.