Saving lives through the gift of organ donation
Despite 30,000 people dying in Wales each year, as few as 70 of them end up becoming organ donors. Here, Specialist Nurse in Organ Donation (SNOD) Sarah Crosby explains what it’s like asking family members if they’d like their dying relatives’ organs dona
THE best part of my job is knowing that I am contributing to saving lives through the gift of donation.
As SNODs, it’s our role to support potential donor families throughout the organ donation process.
We work from the assessment stage right the way through to endof-life care and beyond, giving information and support to our families on a case-by-case basis.
Every day I care for families who are in the mourning process or those who are coming to terms with losing someone, and try to give them as much information and support as possible in order for them to make an informed decision on organ donation.
Although people think our focus is the individual and their decision on organ donation, our work is mainly focused on the families of the bereaved.
We help them to explore their loved ones’ decision so that they’re able to honour it when the time comes.
Our role is varied and complex, but at the end of the day we are all nurses and we’re in this because we care about people.
We can’t take all the credit, as we work as part of a wider team, along with intensive care unit staff, surgeons, doctors and general nurses to help support families at what is a very difficult time in their lives.
It’s tough and so it’s down to us to make this time as bearable as possible. And then comes the hard bit – we need to ask them if they’ve considered organ donation…
We’re often asked to be involved in the initial discussions on end-of-life so that we can carefully consider the best time to broach the subject of organ donation.
We always work with our families in the most empathic and considerate way possible and treat our patients with complete respect, but sometimes it’s hard not to let our feelings show.
To bring up the subject of organ donation, we need to be confident that the family are in acceptance or are coming to terms with accepting death. If a family is having trouble coming to terms with the situation, it’s down to us as a team to work with them and do all that we can to help them understand.
We have loads of very specialist training to make sure that we are constantly building on our skills to handle these very emotional situations. Most of what we do is communication-focused, teaching us how to have these very sensitive conversations at times where families are hurt and often not thinking straight. It’s a very specific skill-set to learn.
We take part in study days, shared practices and often take part in simulation days, specifically designed to replicate “real-life” scenarios.
Even after all this practice, it’s never an easy job, and I still get emotional seeing individuals lives get cut short.
We often get asked “I thought the law meant that I was automatically on the register”. Well, if you are a registered donor, your family will be asked whether they are aware of your decision and if they support that decision.
If you have not registered a decision to opt-in or opt-out, you will be deemed as having no objection to organ donation, unless your family know otherwise.
If your family recall having the chat, and know your decision about organ donation, they will be asked on your behalf.
And that’s why we stress so much that you should tell your family what you want. If you wanted to be cremated and you told your family this before you died, you’d hope that they wouldn’t let them bury you if they knew that’s not what you wanted. It’s the same thing for organ donation.
I’ve seen first-hand that when families know their loved ones’ decision, it is easier for them to cope when it comes to having that conversation with us in the hospital.
Unfortunately, in our roles we are often working with families who are dealing with unexpected loss – either a child, partner or sibling – and so although we need to give the best advice, we also need to understand the grief and distress that these families are experiencing.
I completely understand that donation does not diminish the grief for bereaved families, but I’ve seen in families that organ donation can provide some comfort in knowing that their loved one has gone on to save lives.
I know it’s easy for me to say, as it’s my job and I see it happen on a weekly basis, but honouring your loved ones’ decision on organ donation can give you a huge sense of comfort in knowing that your husband, wife, son or daughter is able to give the ultimate gift – the gift of life.
In my role I sometimes see families overriding the decision of their love ones, and it’s for a whole number of reasons.
Normally, it’s because the topic of organ donation has never been discussed and the families of the deceased don’t actually know what that person wanted. And it’s so sad to see.
As SNODs, it’s up to us to explore both the individuals and families’ decision and try to make sure their loved one’s last known decision is honoured, but we never push anyone to make a decision that they are not comfortable with.
What we’ve found in the past is that if the family are unaware of the decision, the conversation about organ donation takes place for the first time at a very upsetting time.
This is when we see people making decisions based on emotions and not what is best for their loved ones. And that’s one of the toughest parts of the job.
I think that people don’t want to talk about organ donation because we don’t like to think of a loved one dying, or even that we think it will never happen to us. But, in reality, that’s not the case.
We should see organ donation as an opportunity to save lives once our lives are over – whenever that may be.
Since the change in legislation, we have definitely seen an increase in people having the conversation.
Wales became the first UK country to introduce a soft opt-out system, however the family’s support is still needed for donation to go ahead.
And that’s why it’s so important that your loved ones know your decision. Now more than ever, we need to be brave and have an open and honest conversation about organ donation. Ultimately, the need for donors has never been greater.
It’s true to say that there may never be a “right time” to talk about organ donation, and so make the time whenever feels right for you.
Whether it’s over dinner, out for coffee or on the sofa, it’s just really important that they know your decision.
Having the chat is just as important as other life decisions and so why wouldn’t you tell those close to you?
My advice would be to be clear, be honest and make your decision known to all key members in your life so that your choice is respected. And then make sure you know what your family want too.
You can register a decision at any time by calling 0300 123 23 23 or visiting www.organdonationwales.org.
But whatever you decide, tell your family and friends too. How will they know what you want if you don’t tell them? And don’t forget to ask them what they want as well.