How to speak to your family about organ donation
Have you spoken to your family about organ donation? Whether that be telling your loved ones about your own decision or educating the next generation about the choices they make, it’s important to have open and honest conversations about topics like this. Each year, thousands of lives are improved and saved thanks to those who donate organs to patients on the transplant list.
In line with Organ Donation Week (September 26th to October 2nd 2022), L&G have partnered with the NHS to inspire family conversations and registrations for organ donation by putting children and young people at the heart of the message.
It’s a conversation that more and more people across all generations are starting to have. In 2020 and 2021, the percentage of organ donors across age groups were:
- 4% aged 0-17
- 41% aged 18-49
- 29% aged 50-59
- 18% aged 60-69
- 8% aged 70 and over
Yet despite this, as of 2022 it’s estimated that around 10,000 people in the UK, including hundreds of children, are in need of an organ transplant.
80% of adults say they support organ donation in principle. And yet, only 42% of the population in England have registered a decision, which could mean that many families are not aware of what their loved one wanted should a donation be requested. Whatever your own decision about organ donation, it is vital that you talk to your loved ones - so they can fully understand the decision and can be certain about what you want.
So, what do you need to know about organ donation? How do you start a conversation about organ donation with your children? And what do you need to do once you’ve made up your mind? Let’s take a look.
England, Wales and Scotland all now have an opt out system for organ donation. This means all adults are now considered willing to be an organ donor when they die unless they have recorded a decision not to donate or are in one of the excluded groups. However, families will still always be consulted before any organ donation goes ahead.
It is therefore just as important as ever to ensure your family know your organ donation decision. 9 out of ten families agree to support organ donation when they know it was what their loved one wanted.
Blood, organ, and stem cell donation are now a statutory subject for Key Stage 3 and 4 in state secondary schools, as part of health education. Encouragingly, research found that 70% of students reacted positively to lessons that were devoted towards organ and tissue donation, with pupils also reporting 20% more family discussions after learning about this topic at school.
Also, when learner drivers apply for their driving license, they will be asked If they want to opt in for organ donation. This is therefore an important time to ensure they understand the facts around donation and what their options are when it comes to donation.
By providing education around these subjects, and having an open conversation with your child, you can ensure they will be able to confidently answer when they are asked to make their organ donation decision.
It's hard to know where to begin a conversation like this with our children – the thought of talking about death can feel emotional and difficult to articulate. But having conversations that are collaborative, supportive, and understanding of everyone’s point of view will go a long way in opening up communication.
Research found that the best age to start this conversation is between 10 and 11 years old, and as 4% of organ donors in 2020/21 were aged between 0-17, this is a great time to make sure they understand the facts and importance of donation (and you do too).
When you broach the subject matter of donation and transplants with your children, try to highlight the message around being able to give and improve a life. After all, isn’t it remarkable that we are able to share parts of our body with others, while alive and after we die? You could even start by talking about your own feelings on becoming an organ donor.
Tips for having difficult conversations with your children
Legal and General partnered with Clinical Psychologist Dr Angharad Rudkin to explore some useful tips for having difficult conversations like this with your children:
- Age – how long a child can focus on a conversation like this changes with age. The basic rule of thumb is 1 minute per year of their life. This may seem very short but knowing this helps a parent focus the conversation and optimises their child’s chance of taking it all in.
- Language – the younger the child the simpler the language. Don’t assume your child’s knows what things mean, instead ask them if they understand what the word “organ” is, and what the word “donation” means.
- Use examples – children struggle to understand abstract notions until they are quite a bit older, so use examples from your child’s life (either a personal experience or something from a book, TV, or a game) to illustrate what you are talking about.
- Honesty – Respond to questions openly and honestly but don’t be worried if you can’t answer a question. Let your child know you will find out and come back to them or let them know that you haven’t quite figured out the answer to that yet either. They will appreciate your lack of defensiveness and your honesty and will respond in a similar way.
- Timing – Choose a good moment when children aren’t too tired and hungry. Also choose a time when you’re not taking them away from something they really enjoy – whether it’s reading, gaming, playing outside. This means they are more amenable to listen.
- Sensitivity – As you’re talking to your child, keep checking in with how they’re feeling e.g., asking is this ok, would you like me to stop, how are you feeling? If a child is feeling very anxious at the end of the conversation arrange with them a time when you will return to the topic (e.g., after school tomorrow) so that they know there is another opportunity to talk.
- Behaviour – Children take in as much from what you do as what you say. If you are behaving in a calm, relaxed way then your child is more likely to respond in that way too.
- Don't judge or criticise – Let your child ask whatever question they would like, even if it does make you worry as a parent.
- After the conversation – After the conversation is done, move on to an activity together e.g., make lunch, go for a walk to the shop, watch a TV programme together. This will ease the transition back to everyday life and reassure the child that life will now go on as usual.
Dr Rudkin also highlighted the importance of considering your child's sensitivities and cut-off points, in order to have an effective conversation and mitigate any negative responses. She says:
"Just because you as a parent want to talk about something, it doesn’t necessarily mean your child wants to. Children love to talk about things related to their world and the things that really interest them but talking about adult things can easily feel to children like a lecture, a burden, and a bore.”
“Different children have different sensitivities and cut-off points. Some may be able to sit and absorb complex information for a long time, others need to take it in bit by bit. Use your knowledge of your child to plan your conversation. If you have children of different ages, try having the first conversation separately so that you can tailor to their developmental stage and needs. Then you can have a family conversation where you can all share and learn about one another’s perspective.”
There are countless stories of people who owe their lives to the generosity of organ donors. One such person is Mandy Whitworth from Durham.
Mandy was diagnosed with Type 1 diabetes when she was 11-years-old. In the years since, she struggled to manage her condition, and after becoming a parent, her kidneys began to fail and she was told she needed a transplant.
“I was devastated,” said Mandy. “I wondered if I’d live to see my two boys grow up.”
Mandy tried to find a live donor, but without success. Then in March 2016, she was put on the transplant list for a Simultaneous Pancreas Kidney transplant (SPK). After some false starts, Mandy waited patiently and tried to get on with her life. This wasn’t always easy, as her health meant she was sleeping up to 15 hours a day and missing out on much of her boys’ childhood.
But one day, her life changed.
“We were staying with my mum in Lincolnshire when I received a call from my transplant co-ordinator asking how soon I could get to Newcastle. We were packed and on our way in 30 minutes!
“I wasn’t told a great deal apart from that the donor was a 23-year-old – it’s all so easy to get excited to get the call but I also knew that someone, somewhere was grieving.
“I was in theatre for 10 hours and the next few weeks were far from easy, but my new kidney and pancreas were working beautifully and thankfully still are.”
On the one-year anniversary after Mandy received her transplant, she decided to write a letter to the family of the young man whose kidney and pancreas donation had saved her life.
“It was the hardest letter emotionally I’ve ever had to write, I did it from my heart. When writing the letter how do you say thank you? It doesn’t seem enough. To show how grateful I am is to make sure that I look after these precious gifts.”
The person who received that letter was Lozzie Jones, whose son Jordan gave Mandy a new lease of life.
Jordan was just 23, and a dad to a two-year-old son, when he fell off his bike at the skatepark and suffered a traumatic head injury.
“It was two in the morning when I was woken by my phone,” Lozzie explains. “It was my sister, she told me that Jordan had been in an accident.
“Darren, my oldest son, had to give me the devastating news that they couldn’t save my beautiful boy. As soon as I could I went to the hospital to be with my baby and instantly agreed to have Jord’s organs donated. I had been a donor for years and Jordan was so kind and caring, I know he would have wanted to help others. The following morning, I received a phone call to tell me that his organs had gone on to save five lives.
“Just over 12 months after his accident I received a letter off Mandy. I immediately wrote back, and we have been in regular contact since then. Three years to the day that my son gave Mandy life, we met up. It was so nice. I felt like I had known her forever. We have a unique bond that will never be broken. She is my family and I have so much love for her. I know Jordan was looking down on us with his big beaming smile.”
Register your decision
It is so important to encourage conversations around organ donation at home, to make sure family members are aware of each other’s wishes and decisions are registered with the NHS. Before the law changed, even though 80% of the public said they supported organ donation, only 38% had opted in, with the majority simply having not gotten around to registering. This may have resulted in numerous opportunities to donate being missed.
Since the ‘opt-out’ system was put in place in the UK, the organs of 296 people have been donated between May 2020 and May 2021, improving, and even saving so many more lives.
Although the new system has made great progress in increasing organ donations for those who are in need, it is still as important as ever for you to record your decision on the NHS Organ Donor Register. You can also check, register, or update your decision via the NHS app.
Organ Donation Week 2022
This year, the NHS is encouraging people to register their decision on the and embrace all things pink! You can “go as pink as possible”, whether that’s wearing pink, baking pink or drinking pink, to help people see the visible support for organ donations across the UK.
At the end of March 2022, there were 6,269 patients waiting for a transplant, and tragically, 429 patients died while on the transplant list last year. But your support for Organ Donation Week can help trigger conversations about organ donation – both online and offline.
- Organ Donation Register information provided by NHSBT