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Why it’s important to have the organ donation conversation


  • Many people believe that all you need to do to show you want to be an organ donor is to join the NHS Organ Donor Register or carry a donor card. However if you die in circumstances where you could become an organ donor your family would be approached by a specialist nurse and asked to support your decision to donate.
  • It can be big burden for families to make such an important decision at a difficult time, especially if they are unaware of what the individual wanted.
  • Over 8 in 10 people in England believe it is important to share their organ donation decision with those closest to them, however only a third of adults have told their partners or families that they want to donate their organs after they die.
  • Fewer than half (47%) of families agree to donation going ahead if they are unaware of their loved one’s decision to be a donor. This rises to over nine out of 10 when the decision to be an organ donor is known.
  • If your family doesn't know your decision they may not support it. Even if you are on the NHS Organ Donor Register we will ask your family for their consent and abide by their decision.
  • Your family will be encouraged to support your organ donation decision and it will be made clear that they do not have the legal right to veto or overrule that decision.
  • There may, nevertheless, be cases where it would be inappropriate for donation to go ahead if donation would cause distress to the family.
  • Sadly many donation opportunities are lost each year because families don't know whether or not their loved one wanted to be an organ donor. 
  • Should you die in circumstances that mean organ donation may be a possibility, your family will be approached about organ donation. By telling your family you want to be an organ donor in the event of your death, you can relieve them of the burden of having to make a difficult decision at a difficult time. So, tell them your decision. Let them know you want to be an organ donor. 

 

Make sure your family know you want to be an organ donor. Join the NHS Organ Donor Register and tell your family your decision. Start a conversation and ask them what they want too!

Tips to start a conversation

  • Try using an organ donation and transplantation news article in the media or on social media
  • Share an interesting fact or statistic about organ donation, you could start with “Did you know, one person could save or improve up to nine lives by donating their organs?”
  • Explain how donating your organs and tissues will improve, or even save lives.
  • Tell them how you arrived at the decision to donate your organs.
  • Personal stories are really powerful – refer to a real life story on our website about how organ donation has changed someone’s life can help trigger a conversation.
  • Use a common myth as a prompt for discussion.
  • Use an everyday situation to set the scene – these might include: the next time you sit down for a family dinner, getting life insurance/writing a will, celebrating a family anniversary or other special occasion, getting a check-up at the doctors etc.
  • Ask a family member if they have joined the NHS Organ Donor Register, and if not, would they like to donate their organs when they die?


To help initiate a conversation, the following conversation starter examples might be useful:

  • I’ve just seen this leaflet on organ donation. Did you know that one organ donor can save or improve the lives of up to 9 people? I’d like to be an organ donor and have joined the NHS Organ Donor Register. Do you want to be an organ donor?
  • I just saw this video showing how organ donation has transformed a person’s life. It seems like a good thing to do and one day I may be able to save someone’s life. What are your thoughts on organ donation?

Real life stories of the importance of having a conversation

Top reasons for people not having a conversation

  • It never came up in conversation
  • I haven’t got round to it
  • I don’t want to talk about death
  • I didn’t think I needed to
  • I worry it might upset people

Talking about death is never an easy subject, but it is extremely worthwhile to talk about organ donation and can really help save and improve many lives. So tell your family your organ donation decision, and ask them share theirs with you.