Organ donation in the UK has now changed to an "Opt-out" system.

What does this mean for you and your family?

Bear with me, and I will briefly go through the changes, and how you can ensure you can communicate your wishes, even if it is too hard to talk to your family. [1/n]

Death and dying are very hard subjects to talk about, and often make people feel uncomfortable. However, at some stage we will all die, and it’s worth thinking in advance what we would want at that point in our lives - and ideally communicating that to those close to us. [2/n]

Sometimes, death may occur in a way that means the body organs (e.g. kidneys, lungs) would not be significantly injured, and could potentially be donated to someone else who might really benefit. [3/n]

Take kidneys for example.
If your kidneys fail, you have to have dialysis 3 x a week, & simply cannot life your life as normal. After a kidney transplant, ppl may be free from dialysis, get back to normal lives, & after 1 year, that transplant will be saving the NHS money. [4/n]

There are lots of people waiting on all transplant lists. There simply aren’t enough organs being offered for donation.

The law change means that rather than opting IN to donate your organs, people would need to opt OUT. [5/n]

However, in these scenarios what we really want to know, is what your wishes are.

Most times, people are able to clearly communicate their wishes to us before their death. [6/n]

Some people may have a sudden injury or event that means they are unconscious and unable to communicate.

Let’s say, for example, that you have suffered a severe injury/illness and are now unconscious. [7/n]

One key point here is that organ donation is entirely separate from any other aspect of your care.

It is very important to understand that only once ongoing medical therapy is ending, will organ donation be considered. [8/n]

We will approach your family to ask them to help us understand what your wishes and beliefs would be. This is key. They know you best. We are not asking them what their own opinions are, but what they believe YOUR opinions are. [9/n]

One lady had spoken to her husband two months previously, and he told me: “She said she can’t take them with her where she’s going, so if anyone else can benefit from them, I know she’d want to do that”. [10/n]

Another lady told me: “He always said he wanted to be buried all of him together. He would never consider organ donation. It’s just not what he would want”. [11/n]

These are not easy conversations to have. And they are at the most difficult and emotional times when a loved one is coming to the end of their life. They are done to attempt to best meet and honour your wishes and beliefs. [12/n]

But now imagine trying to guess what your loved one would want. You want to help the medical team make the best decision for them, but you’re just not sure. Or worse still, you think they would want to donate their organs, but another family member thinks the opposite. [13/n]

By knowing your wishes, this can ease any potential burden on your family at what will be an already very difficult time.

My father refuses to discuss dying. I am worried how anyone could make informed decisions in his best interests, if he won’t tell us what he wants. [14/n]

To reiterate the point, no family member is making the decision here. The medical team are very reliant on the family to help us make the best decision for the patient, with all the information to hand, but the family are not being asked to make the decision. [15/n]

The “Opt out” doesn’t change that. But it does reduce the chance of a family thinking their loved one wouldn’t want to donate their organs, simply because they were not on the organ donor register. [16/n]

We will always respect the information given to us by a patient’s family.

The easiest way to help us meet your wishes is to tell people what they are. [17/n]

We completely understand that it isn’t easy to talk about.

Please register your wishes on the organ donor website – whatever they may be:

https://www.organdonation.nhs.uk/register-your-decision/

[18/18]

Further info also available via @NHSOrganDonor