And the worst?

We can save lives even after we have passed on

Every day, three people in the UK die, waiting for a lifesaving transplant. You are five times more likely to need a transplant than be in a position to be able to donate. Only 1% die in circumstances in which they are able to donate their organs.

Shefali Saxena

Transplants are life-saving. Since April 2021, 1295 people in the UK have received life-saving transplants. However, there are still over 5000 people on the transplant waiting lists. Every day, 3 people in the UK die, waiting for transplants. This issue affects BAME communities far more with South Asians waiting for longer for a transplant.

BAME communities are overrepresented on the transplant waiting lists – 28% of lists. This means that people from these communities are more in need of transplants but the organ donor register is under-represented i.e. 9%. Furthermore what is worrying is that BAME families are more likely to refuse. Only a third of BAME families agree when approached at end of life. Worryingly there is an increased number of opt-outs from BAME communities as well.

There are a number of reasons for this. Religious and cultural barriers play a huge role in increased anxiety in BAME communities about organ donation. BAME families worry that their faith beliefs are not respected. They are worried that the sanctity of the body is not preserved i.e. donation and

Dr Radha Sundaram

retrieval of organs may result in mutilation of bodies. They also do not have the same access to information.

A number of measures have been introduced by the NHS to address this inequality. There is a public information campaign with BAME communities that seeks to improve access to accurate information. Faith beliefs can be recorded in the organ donor register. There are a number of community projects all over the UK involving religious and faith organisations promoting awareness.

Dr Radha Sundaram MBBS MRCP FRCA DICM FFICM is a Consultant in Intensive Care and Anaesthetics at the Royal Alexandra Hospital in Paisley. She is the Regional Advisor for training in Intensive Care Medicine for the West of Scotland and is also a Clinical Lead for Organ Donation in Scotland to promote awareness amongst BME communities. Speaking exclusively to Asian Voice, she addressed how the community can be encouraged to come forward and volunteer to take part in organ donation. Only 50% on organ donor register

She said, “There is tremendous public support for the donation which has been evidenced by surveys of the public. In Scotland, over 90% of the public support donation but only 50% are on the organ donor register. There exists a gap between intent and action. The simple gesture of discussing our wishes with our families leaves them certain and empowers them to respect the wishes of their dying relative. We can record our wishes by signing up to the register.

“BAME families decline when approached – while this may be due to anxieties around fulfilling cultural and religious post-death rituals, a significant number say no because they are unaware of what their dying relative would have wished. We need to encourage conversations about our choice around the end of life. We need to normalise discussions about death and donation. There is a section in the organ donor register now that asks us about our faith and beliefs – this is a safeguard and ensures that teams are aware that certain families have specific religious beliefs that need to be considered. What happens when people drop out?

When asked how doctors deal with last-minute drop-outs and lack of volunteers while they watch patients die, Dr Radha said, “The loss of a patient is always very distressing. The patients that die on a transplant waiting list may not always die in an intensive care unit and the doctors that approach families regarding donation are never the doctors who look after the transplant patients. This is a fundamental safeguard in the UK so that doctors who look after the dying patient who has the potential to donate have no conflict of interest or ulterior motive. When doctors approach families at end of life they do so to give families an opportunity to respect their dying relatives wish, facilitate donation if the patient has had no expressed objection to it and in a small way, change a devastating situation into a life-affirming one because the decision to donate is legacy building and saves lives. ”

She also mentioned that there is no published data on the gender distribution on the NHSBT or government website but it might be worth looking to see which gender is more likely to donate.

Only 1% deaths can proceed to donation

In her message to the readers of Asian Voice, Dr Radha said, “It is important that we leave our relatives certain and discuss our dying wishes. Only 1% of deaths can proceed to donation. At the time our families are approached, they are enveloped by grief at the impending loss. If we have shared with them our wishes about donation, they are then in a position to respect our wishes to donate and help build our legacy. It is the most selfless gift they can give.

“The change in the law to Optout actually safeguards the rights of the individual robustly and if we support donation as a society and accept transplants, it is important that we consider a donation, discuss our wishes, opt-in (i.e. register online) – by doing so, we can save lives even after we have passed on.