Sujatha Suriyamoorthi

Manager-Information Systems

MOHAN Foundation

The British Transplantation Society (BTS) and NHS Blood and Transplant (NHSBT), UK conducted their second BTS NHSBT Joint Congress on 24th and 25th February 2021. MOHAN Foundation was invited to attend the congress and this was facilitated under the auspices of the Memorandum of Understanding (MoU) signed between NHSBT, UK and MOHAN Foundation to learn from each other and work together to improve the organ donation rate in both the countries. Close to 900 attendees across the world attended the congress. The congress addressed various aspects of transplant programme which included donation and transplantation activities during the COVID-19 pandemic and the opt-out experience in the UK.

Factors influencing the family consent rate for organ donation in the UK

The UK's consent rate for organ donation was on the rise. The consent rates for donation after brain death (DBD) and donation after circulatory death (DCD) was 64% and 44% respectively in April 2011, which had increased to 72% and 61% respectively in April 2019. However, the UK remained one among the countries which had high family refusal rates.

A study was conducted to analyse the factors influencing family consent for organ donation in both DBD and DCD. The study was conducted for a period of five years from 1^st April 2014 to 31^st March 2019. More families were approached for organ donation after circulatory death (9,405families) than after brain death (6,060 families).

The analysis was done based on the following two factors

• Patient factors
• Process factors

Patient factors influencing consent rate in DBD and DCD

Process factors influencing consent rate in DBD and DCD

Journey of the body and soul – How different faiths have interacted with organ donation

Religious beliefs play a significant role in the attitude towards deceased organ donation. Hence it becomes important to understand the religious views while engaging with people from multicultural societies.

Studying the different attitudinal segments of public

To understand the barriers in delivering organ donation message it is important to study and understand the distinct attitudinal segments of the general public.

• Interested but uninformed – A segment that feels organ donation is important, but does not know enough about the process and needs clarification from its faith leaders.
• Interested but cautious – Segment of people who are interested to participate but worried about their religious faiths and rules.
• Cynics – This segment feels that organ donation is strictly prohibited and a serious breach of their religious faith.

Involving faith leaders 

Empowering and enabling the process of conversation about organ donation amongst various faith communities will help in understanding the barriers. Facilitating dialogues among faith leaders and involving them in public engagement will give access for religious counsel and help in decision making.

Ensuring public trust

It is inevitable that public trust in the system improves public participation in the donation programme. In situations like COVID-19, the Government should be mindful and should not do anything that jeopardises the minority communities. Medical professionals involving in public engagement and collaborating with local community organisations will certainly help improving trust among the public.

The UK opt-out experience

Wales became the first country in the UK to adopt the opt-out system for deceased organ donation in December 2015. As a ripple effect, the law change was implemented in other parts of the UK as well – Jersey (April 2018)and England (March 2020). The opt-out system in England is known as Max and Keira's law, named after Max, a boy who received a heart transplant and Keira, a nine-year old girl, his donor. Since then, public awareness campaigns were launched to help the people understand the choices that they have. The campaigns were well received by the public as they could relate to real life stories, Max and Keira. Structured training programmes were facilitated for professionals involved including SNODs for effective implementation of the law. Other parts of the UK – Scotland, Northern Ireland, Guernsey and Isle of Man have taken initiatives to introduce the opt-out system and are working towards the law change.

Donation actions framework in the UK – an updated professional, ethical and legal framework

As the country moved to the opt-out system, the need for an updated framework has been felt by the professional bodies. The draft framework aims to summarise the professional, legal and ethical guidance into one document for donation actions to facilitate deceased donation in England, Wales and Ireland. The framework also intends to address the changes in professional practice in recent times and advances in medical technology. Donor actions are activities or interventions carried out on a potential donor either before death or after death for the purpose of exploring donation eligibility / facilitating deceased donation. In general, after death, donation actions before consent as well as after consent are equally acceptable. However, the donation actions after death are less ethically complex comparted to donation actions before death. Based on these two factors -whether the patient is deceased and/or whether there is consent for organ donation, the framework demarcates the donation actions as follows

• Before death and before consent
• Before death and after consent
• After death and before consent
• After death and after consent

The professional bodies are expecting the draft framework to become practical guidelines after reviews and stakeholders' endorsement in 2021.

The congress also had a session on 'Fostering awareness about organ donation and registration – Lessons from Australia'

Australia follows the opt-in system and people are strongly encouraged to register in the Australian Organ Donor Registry (AODR). Studies have shown that 90-93% families will consent for organ donation if a donation decision has been registered in the AODR and this drops to 44-52% when the donation decision is unknown. This is largely because the next-of-kin has to take the decision on his/her own and this adds to the anguish at a time of grief. In spite of active campaigning, the registration rate still remains low at 34%.Various efforts were made to understand the low organ donation registration rate and strategies were designed with the aim to increase the number of people who register on the AODR. Initiatives were designed based on three principles –Respect - Society at a large has positive support for organ donation but often coupled with some level of concern and care. These beliefs need to be respected irrespective of education, social, cultural, economic and religious diversities. Interaction - It is important to invite the public for respectful dialogue with professionals to discuss their beliefs and concerns. Immediacy - Giving people an immediate opportunity to register for organ donation immediately after the dialogue. Once they take a decision, this gives them a choice to act upon it.

MOHAN Foundation presented an abstract at the Congress

MOHAN Foundation's abstract on 'Deceased organ donation programme -Impact of trained transplant coordinators' services in a public hospital in India'(Authors – Sujatha Suriyamoorthi, Dr. Sumana Navin, Dr. Sunil Shroff) was accepted for oral presentation at the Congress. The pre-recorded abstract presentation (7 minutes) was streamed on the conference site. The abstract showcased that trained transplant coordinators working in collaboration with intensive care personnel were instrumental in facilitating a greater number of deceased donations in the public hospital. The counselling services by trained transplant coordinators resulted in a consent rate of 68% (February 2010 –January 2020).