When affected by a disease, such as a terminal brain tumour, many people wish to do what they can to make a difference for those in the future – to help find a cure and prevent other families from being affected in the same way.
One way of making a difference is through brain donation. Giving researchers access to brain tissue is important in the development of new and better treatments for those affected by a brain tumour.
Why I chose to donate my daughter’s brain
In 2017 Olivia was diagnosed with a DIPG brain tumour and after bravely battling the disease she passed away just before her 6th birthday.
In this video, her mum Clare openly talks about why she and her family decided to donate Olivia’s brain to research.
How can I donate my brain and spinal cord?
If you decide that you would like to donate your/your loved ones brain after death, there are various people you should contact to register your wishes.
It is important to make your wishes known in writing.
Your nearest brain bank
The Human Tissue Authority (HTA) has a list of brain banks with their locations.
Some banks may specialise in brains that have been affected by a specific disease, so your brain may be taken to a different bank, but you should still contact the bank nearest to you.
The person wishing to donate their brain can consent themselves. Or, where there are no records of their wishes, or they are not able to consent, e.g. they are too young, consent can be obtained from a person nominated to act on their behalf or by a person in a qualifying relationship at the time of their death. This will usually be a spouse/partner, parent or close family member.
Qualifying relationships are ranked (see below). The person at the top of the list should be asked first. Each person has priority over someone below them on the list:
- spouse or partner, including civil or same sex partner (a person is considered a partner if they live as partners in an enduring family relationship)
- parent or child
- brother or sister
- grandparent or grandchild
- niece or nephew
- stepfather or stepmother
- half-brother or half-sister
- long-standing friend.
Your medical team
Although you can record your wishes to donate tissue within your Will, the reading of the Will is likely to take place too late for the donation to take place. As such, as well as contacting your nearest brain bank, so that the appropriate arrangements can be discussed and made, you should also make your/your loved one’s medical team aware in advance. This includes your hospital team and your GP. (Brain banks will often write to GPs to gain key information about you and your condition when you register with them.)
They can make a note on your records and make sure that the donation process takes place as speedily as possible.
It is a good idea to choose your funeral directors and let them know that you will be donating your/your loved one’s brain.
Friends and family
It’s also important that you tell a relative and/or close friend about your decision to donate, so they know what your wishes are.
- Talk to your healthcare team about the possibility of leaving your whole brain or tumour site to research after you die.
- Make sure all the relevant paperwork is completed. It is important to discuss this with those you love so they are aware of what your wishes are after you die.
- It’s best to discuss brain donation with your chosen funeral director as it may affect the logistics of your funeral. For example, you can’t be embalmed prior to donation.
- Make sure if you have an Advance Care Plan you also update it to include your brain donation.
- Who is the best person to talk to about the if I can leave my brain to research after death?
- What do I have to do to leave my brain or tumour area for future research?
- Can my family still see me in a funeral home after I have donated my brain/Tumour?
- Should I add this to my Advance Care Plan?
I wish to donate my brain. What does my family/carer need to do after I die?
The brain bank where you have registered should be contacted as soon as possible to make them aware that the death has occurred. The bank will do all that they can to make sure that the donation takes place.
When a donor dies in hospital, a hospital doctor will normally certify the death and the donation will take place before the body is moved into the care of the funeral directors.
When the death occurs away from a hospital, the body is usually taken directly to the funeral home and the GP will confirm the death. A time for the donation to take place is usually agreed between the funeral director and the pathologist.
Most brain banks will cover the cost of transporting the body to the hospital mortuary for the donation to take place, and will arrange the collection of the body by the funeral director. If you know which funeral home will be used, you may wish to also make them aware of your wishes.
What may prevent the donation from taking place?
While everything is done to make sure you can donate your/your loved one’s brain if you want to, each donation is dealt with on a case by case basis. Unfortunately, in some circumstances, brain donation is not always possible.
To be suitable for research, the tissue should be obtained from someone who has recently died. The majority of banks will accept tissue within 48 hours, but speak to your nearest brain bank to check their policy on this.
Delays may occur if the cause of death is uncertain, as the death will be referred to the coroner for the cause to be confirmed. The coroner should be informed of your wishes and that relatives have agreed to the donation. If the coroner has no objections to the donation, it can still take place.
Delays may also be caused as brain banks rely on NHS mortuary services to assist with the donation and these may not always be available.
Will donating my/my loved one’s brain affect the funeral?
Brain and spinal cord donation will not normally affect the funeral. Speak to the brain bank about timeframes for the donation when you first contact them.
I don’t have a brain tumour. Can I donate my brain if it is healthy?
Yes! To ensure that research is thorough, it’s important that researchers also have access to healthy brain tissue to compare it to the tissue of those who have a brain tumour. These healthy tissues are called control tissues.
There’s currently a shortage of tissue donated by people with healthy brains on their death, so your kind donation would be a very valuable gift.
Support and Information Services
You can also join our active online community.
In this section
If you need someone to talk to or advice on where to get help, our Support and Information team is available by phone, email or live-chat.
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