Death is a taboo subject, for many of us. And there aren’t many people with a keener understanding of that fact than specialist nurses in organ donation.
UNISON members Michelle Pearson and Rachel Pritchard work for NHS Blood and Transplant. If a heart, liver, or other vital organ becomes available to someone on a transfer list in the North East, it’s likely that they will take care of it.
There are two specialist nurses in organ donation (SN-ODs) like them on call in the region at any time, with embedded roles in local hospitals, running a 24/7, 365 day-a-year service.
Their job is to work collaboratively with critical care staff to promote organ donation as part of end-of-life care for the 1% of people who die in circumstances where they can donate.
With six years under her belt in her current SN-OD role, Michelle couldn’t be clearer about her mission: “To serve and improve the lives of those in need of an organ.”
She and Rachel both speak passionately about those who give life through their donation, whether that’s the donors themselves through their express wishes, or the families who make that choice.
As a former senior staff nurse on an intensive care unit, Michelle helped bring lives back from the brink on a daily basis. Unfortunately that isn’t always possible. When it isn’t, she says that organ donation at least means “something good comes out of it”.
Every day three people in the UK die because a compatible organ hasn’t been found for them. It’s a heartbreaking statistic that doesn’t escape the 6,000 people who are playing life’s worst waiting game on the transplant list at any one time. Luckily, it hasn’t escaped our lawmakers either, as new legislation steadily makes its way through Parliament with unanimous support.
The Organ Donation (Deemed Consent) Bill was introduced by Labour MP Geoffrey Robinson and has passed its first two readings. It aims to amend existing law in England so that when a person dies, if they have not made a decision about donating their organs (or appointed someone else to make that decision), the default position will be that consent will be deemed to have been given.
Wales has already moved to this opt-out system, and Scotland has committed to introducing legislation too. It’s an issue rightly rising above party politics, with the UK government supporting the bill’s drafting and consulting on how a new system of ‘deemed consent’ could work in England.
So if it becomes law, how will the Organ Donation Bill affect Michelle and Rachel’s work? They agree that the biggest potential impact of the bill will be to raise awareness and get people to talk about the subject of donation. And their experience is that healthcare colleagues support an opt-out system like the one proposed.
But on a day-to-day level, they say, “We will always support families, whatever the decision is.”
It’s no surprise that ‘specialist’ is in these nurses’ job titles. Rachel describes the six-month training period as “the steepest learning curve of my career so far”. Much like Michelle, she was formerly a senior staff nurse on a cardiothoracic ICU, working on the other side of the donation process – with organ recipients. She calls her relatively new SN-OD role “quite elusive”.
She adds: “It’s nothing like I expected – the magnitude of the responsibility, but also the unbelievable support within the team.”
As they explain the stages of their work, it’s clear that communication skills are paramount. From being involved with the “breaking bad news conversation”, SN-ODs carefully develop supportive relationships with families, offering them as much information as they need.
They always seek evidence of a patient’s decision on the NHS Organ Donor Register before beginning the discussion with families, to ensure that in these cases they know their loved one’s wishes. From a numbers perspective, this is crucial: where the patient’s choice to donate is known, 91% of families consent to donation.
Through the gamut of emotions, SN-ODs help families navigate the donation process and provide practical help to co-ordinate all end-of-life care wishes, such as talking to coordinating chaplains, arranging keepsakes, handprints and more.
It’s a relationship that doesn’t end with the donation process. SN-ODs remain the link for aftercare. “We hold remembrance services for our donors every year,” says Michelle, “and meet up on a regular basis with families.”
Organ donation can’t ever minimise the grief felt by those left behind when somebody dies. But it can provide comfort to know that a loved one has offered a fellow human being the chance at life through the gift of donation.
New legislation could help challenge the taboo, get us all talking about what we want, and ease the burden on our families if they are ever faced with the weight of such a decision. Fortunately, the expertise and dedication of specialist nurses like Michelle and Rachel is in no doubt at all.