You have signed up, but are you really a kidney donor?

An information drive in Tembisa. Many people are unaware that there are many factors that can affect what eventually happens to your organs. (Photo: Sandy Maytham-Bailey)

An information drive in Tembisa. Many people are unaware that there are many factors that can affect what eventually happens to your organs. (Photo: Sandy Maytham-Bailey)

People often think that by signing up to be an organ donor, this will ensure that their organs are donated at the time of their death. Unfortunately, signing up is no guarantee, and signing up does not make you an “organ donor”.

Deceased organ donation happens when a person dies. You may have “signed up” as a potential organ donor, but you are only an “organ donor” after you die. Because it happens after death, people who wish to give their organs won’t be present to make decisions about what should happen to their bodies. So, countries have laws that regulate the process.

In South African law, signing up to be an organ donor during your lifetime does not guarantee the donation after your death. This is because your family has legal rights when deciding about your remains. The crux of our transplant legislation is that you may have signed up as an organ donor, but should the set of circumstances arise where you can physically become one, you family will ultimately make the decision for you, and legally authorise the donation or not.

Where does this leave people who want to be organ donors, or those who have already signed up for organ donation? Because your family will make the decision on your behalf, the most important thing is for your family to know what you want. You need to tell them that your preference is to be an organ donor. If you have a big family, tell as many members as you can.  Decisions about organ donation are made at a very emotional time, when families are traumatised because their loved one has died. Making decisions under these circumstances, and thinking about complex things such as organ donation, is often the last thing a grieving family wants to do. But, if your family knows that this is what you wanted, making decisions under these circumstances will be easier for them.

Organ donors and their families also need to understand that even if you have signed up and told your family your preferences, there are still other factors that might prevent you from becoming a donor. For example, although you may have signed up for organ donation, hospital personnel are not able to access the organ donor list to check whether or not you have signed up. Sometimes you may have a medical condition such as cancer, which means that you cannot become an organ donor. Also, in South Africa, there is no national organ donor referral process, which means that not every hospital or staff member will refer potential donors.

This all has implications for ethical practice. It is not only important that we sign up as organ donors. We also need to ensure our families know that is what we want. When we die, a number of factors need to coincide so that organ donation actually happens. To give the gift of life requires more than just signing up. 

Written by Dr Harriet Etheredge