Why we need to increase the UK’s consent rate for organ donation

 

Sally Johnson, Sally Johnson, Director of Organ Donation and Transplantation at NHS Blood and Transplant
Sally Johnson, Director of Organ Donation and Transplantation at NHS Blood and Transplant

An analysis of the organ donation protocols of 48 countries has been published in BMC Medicine today, studying the differences between opt-in and opt-out systems. In this guest post, Sally Johnson, Director of Organ Donation and Transplantation at National Health Service (NHS) Blood and Transplant, tells us about why we need more people to consent to organ donation.

As director of Organ Donation and Transplantation at NHS Blood and Transplant I’m delighted to have seen huge increases not just in the numbers of deceased organ donors over the last few years, but also in the numbers of patients benefitting from a transplant.

However, I want to explain why we can’t rest on our laurels and why we still have a huge amount of work to do if we are to change public attitudes to organ donation and bring about an increase in consent rates.

Progress has already been made

But before I do, I want to paint a picture of the progress that’s been made. The UK has taken a huge leap forward in organ donation and transplantation rates over the last few years. The number of deceased organ donors has increased from 809 in 2007/8 to 1,320 in 2013/14. The number of deceased donor transplants increased from 2,384 to 3,509 over the same period. What this means is that more people are getting the transplant they need than ever before.

These figures reflect the huge amount of work and transformation that has been taking place across the NHS to embed deceased donation practices.  Clinical leads for organ donation now exist in all acute Trusts and hospital teams work hard to identify potential donors and refer them to NHS Blood and Transplant’s team of specialist nurses in organ donation.

Quality training materials and the National Institute of Health and Care Excellence (NICE) guidance on donor identification and consent are in place to ensure that families are approached in an appropriate and sensitive way.

We have also established a National Organ Retrieval Service to ensure that there are surgical teams available whenever and wherever a family agrees to donation so their organs can benefit patients.

I think that the NHS has done almost all it can do to build an infrastructure that supports an effective donation and transplant system, making the most of every donation opportunity. But this is not enough.

More lives can be saved

What we should never lose sight of when highlighting this important progress is that three people in the UK in need of an organ transplant die every day. Unless we see a seismic shift in public behaviour and more families of potential donors consenting to organ donation, more people will die before patients get the organ that could transform their lives.

You might wonder why consent is so important when there are millions of people (more than 20 million people in fact) on the NHS Organ Donor Register. Lots of people have made the decision that they want to help others when they die, right?

Yes, that’s right and that’s great! But the challenge is that only around 5,000 people of the half a million people who die in the UK each year die in circumstances where they could potentially donate their organs.

organ donation box (deceased)
Image courtesy of NHS Blood and Transplant

Family consent is key

This figure means that every single potential donor is precious. Many of these potential donors are not on the Organ Donor Register and even when they are, their families when approached may find it too difficult to agree to donation going ahead, often due to grief and the fact that they may not fully understand what the donation process involves.

They also may have to make a decision from scratch themselves as their loved one wasn’t on the register and they had simply never discussed donation as a family. This can leave the family with the burden of having to guess what a loved one would have wanted at a difficult time.

Sadly, the impact of all is this is that four out of ten families approached say no. The UK’s family consent rate for organ donation has remained stubbornly low. Unfortunately, if families don’t say yes to donation, their loved one’s organs will be buried or cremated and other patients waiting for a transplant may die too.

This is even more frustrating as 82% of people in England say that they would definitely, or would consider, donating some or all of their organs.

There is no ‘magic bullet’ to solve the issue of low consent rates in the UK. It is clear that we need a revolution in public behaviour where people make the positive decision to donate and discuss that decision with their families.

What is very clear is that we need to continue working closely in partnership with the UK health departments, other UK Government agencies and the voluntary sector in order to bring about the necessary change in attitudes.

I am really encouraged to see that many of these partnerships are making a positive difference, for example our successful work with the DVLA (Driver and Vehicle Licensing Agency) and the Behavioural Insights Unit to encourage Organ Donor register sign ups. But we know that more needs to be done.

Next year Wales will be moving to a new legislative system with people being given the choice of registering as a donor, recording a decision not to be a donor or taking no action and being deemed to have consented to donation. We’ll all be watching with great interest to see what impact this initiative has both on donor numbers and on consent rates.

We need greater awareness and discussion

What am I asking for? We need our hospitals to continue identifying and referring potential donors. We know that our colleagues in Intensive Care teams and emergency departments are under pressure but we really do need them to keep their eyes on the ball for donation.

Every hospital has patients waiting for transplants, so any decision not to refer will have wider implications. Too many patients continue to die needlessly when waiting for an organ transplant, while others are forced to continue with treatments which greatly restrict their quality of life.

What we need in this country (and undoubtedly in others too) is for everyone to make a positive decision to donate, to sign up to an Organ Donor Register and, most importantly, to tell their loved ones that they want to donate.

Surely there is nothing you can be more proud of than saving lives after your own death? And don’t we also have a societal responsibility to save lives if we can?

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