Blog: Supporting families through the organ donation process

What is the role of the specialist nurse for organ donation in the hospital?

Our role is to fully assess patients referred to us potential organ donors from either critical care, NICU or the Emergency Department. If a patient is suitable for organ donation we will then speak with their family about whether the decision regarding organ donation was ever expressed, either via the organ donor register or verbally to family or friends. We spend time with families answering any questions they might have in order for them to make a decision about what they believe their loved one would have wanted.

How do you support colleagues and families at the Norfolk and Norwich University Hospital?

Our role is to support families whose loved one is in a position to help save the lives of others through the gift of organ donation. As a team of specialist nurses we are there every step of the journey, supporting the family and ensuring the best possible end of life care is delivered to their loved one throughout the donation process. We work alongside the unit staff and sometimes the chaplaincy team to support families through the last days and hours of their loved ones life. The support we offer to families can continue long after donation has taken place when required.

Another aspect of our role involves providing teaching and support to nursing and medical staff on the units, both in donor management and the emotional and psychological aspects associated with donation.

What is Max and Keira’s Law?

The government has remained committed to saving as many lives as possible through the gift of organ donation and on 20 May 2020 the new legislation came into place. Organ donation in England has changed to an opt out system, it is also referred to as “Max and Keira’s Law”.

This means that all adults in England will be considered to having agreed to be an organ donor when they die unless they have recorded a decision not to donate or are in one of the exclusion groups. Those who do not wish to donate their organs will be able to record this decision on the NHS Organ Donation Register.

It is that we ensure that people are aware of the law change and that organ donation is always an individual’s choice.

It is rare for people to be able to donate their organs when they die. Only 1 in 100 people die in such circumstances. Those who do choose to donate save and improve the lives of people wanting for an organ transplant.

We know that 80 per cent of people in England support organ donation but only 38 per cent have opted in. This means that families are often left with a difficult decision when a loved one dies. With significantly more people willing to consider organ donation than are actually registered as donors, the law change will presume consent unless people choose to opt out of being a donor. We have already seen how this can help families in the decision making process, meaning the responsibility is not solely theirs to make.

How has your role changed following the introduction of the “opt out” system?

In reality, very little has changed. As specialist nurses our focus is to provide support to families at what is an extremely emotional time and to help them understand what their relative wanted when it comes to discussing organ donation. This is still our focus now that the law has changed. We will always encourage and support families to think about what their relative wanted. We know that when families have had a conversation about organ donation it tends to make organ donation discussions easier for everyone.

If someone hasn’t recorded a decision, this is when, under the new law, we will take it to be that the person was prepared to be an organ donor. We will speak with the family as we always have done and will check whether they have any further insight about what their relatives wanted.

Whatever an individual’s views on organ donation we would encourage everyone to talk to their families at the earliest opportunity, it makes such a difference when family know what their relative wanted.

How has the Covid-19 pandemic affect the way in which you work?

Covid-19 has bought significant challenges and changes to the entire NHS and the process of assessing and supporting a potential organ donor and their family was not immune.

Organ and tissue donation and transplantation was maintained for the most urgent patients during the Covid-19 surge.

At the height of the pandemic deceased donation and transplantation was down over 80 per cent. The service has recovered remarkably quickly from that surge.

Our referring units and theatre teams here at the NNUH have remained hugely supportive of the programme. It has been more difficult for us to have conversations with family members due to the visiting restrictions which were in place, and the need to wear PPE has made face to face communication much more difficult.

Restrictions placed upon entering units with known Covid-19 patients on them added to the complications we faced during the pandemic, along with not being able to handle patient notes which had been on the unit. We were required to think on our feet and identify solutions to the many difficulties we were faced with. Despite the challenges faced, we have managed to successfully fulfil the wishes of several patients during the pandemic, allowing them to help save the lives of others after their death.

How are you and the team planning to mark organ donation week?

This year will be very different as we will not be able to celebrate donation week in the way we normally would. Normally we would have our gazebo up and be available to meet with staff and members of the public to discuss organ donation. This year we have a new Organ Donation flag which will be raised above the hospital at the beginning of the week and we will be delivering cakes to staff involved with the organ donation process. We are also working with Hospital Arts to have a temporary piece of art work created to mark organ donation week commemorating the success of organ donation and remember all those who have selflessly donated at the NNUH.

Natalie Ashley

Matthew Overy

Kathy Alger