Brain Donation: Opt-in or Opt-out?

In today’s Independent there was an article about a new report calling for increased levels of brain donation, and the ability to ignore the requests of family members if a deceased person has already asked to donate their brain.

My Personal Experience of Brain Donation

On 26th December 2012 my father died due to complications connected with Alzheimer’s Disease. Several months before his death he had asked me if there was anything that could be done with his brain. I explained that there were tissue donation programmes which could use his brain to learn more about Alzheimer’s disease which could help with diagnosis, treatment, and perhaps eventually a cure.

His response? “If they can find it, they’re welcome to it!”.

So, not long after his death the wheels were set in motion to have his brain and spinal cord removed, examined and stored for research.

My feelings about this? Pride.

I wasn’t sad, upset, angry or anything else. It just made me immensely proud that my father had made this decision.

Why do brain banks need brain donations?

The scientific and medial community don’t fully understand dementia – whether Alzheimer’s, Parkinsonian, or any other type. We know a lot more than we did 10 years ago, but not enough to truly understand the diseases and get to grips with them in order to find a treatment or cure.

By studying diseased AND normal brains (and comparing the two), researchers can begin to understand and identify the mechanisms which cause disease, why it happens in the first place, and how to stop (or perhaps prevent) it.

The more brains that are studied, the better the chance of finding a treatment or cure that works for everyone.

Emotions running high

I spoke with Petrie Hosken on LBC on 1st June about this, but rather than focusing on the importance of tissue donation – a lot of those who hit out at the suggestion that more brains should be donated tended to be saying “it’s my brain, I should have the right to decide what happens to it”, while in the same breath saying that the feelings of the deceased loved ones had to be taken into account, and must be valued above all others in the minutes, hours and days after a loved one’s death.

You can’t have it both ways.

In my view – there is no way that relatives should have any power to reverse a loved one’s decision about tissue donation – unless they were not of sound mind when they made the choice.

Although one’s gut reaction to taking a loved one’s brain out of their skull after death might be a little unpleasant, if you look past the gut reaction just a little, then surely it makes sense to always opt for brain donation?

By donating brain tissue the deceased is making a positive impact on the world long after they are gone. In fact – if research on that brain tissue ended up improving treatment for a disease like dementia – their donation could end up improving (and perhaps saving) the lives of hundreds of thousands of people – including the friends and relatives they leave behind.

If the brain isn’t donated? Then one of nature’s most incredible objects – one of the most complex and intricate in the known universe – ends up rotting in the ground or being incinerated.

Surely, it’s a no-brainer? (Pun intended).

Status quo bias

So why do we get so upset about this topic? I think it has a lot to do with our outdated “opt-in” tissue donation system.

We grow up in a culture where we can decide to add our names to a list which will allow doctors and scientists to make use of our organs.

We have an 11% consent rate.

If you were born in Austria you would grow up with a different mindset. There they have an “opt-out” system. By default your organs are made available to those in need of transplants etc. but you have the option to opt out of the scheme.

The Austrians have a 99.98% consent rate.

Is that because Austrians are kinder, more thoughtful, and altruistic by nature? Possibly. (It’s not this. Culturally Austria and Germany are similar, but Germany’s opt-in system yields a 12% consent rate!). But the most likely reason is that we humans are inherently lazy.  Most people accept the default option and never bother to take action to change it, unless they feel strongly about it.

The best option here would be implied consent with an option to opt-out. I’ve discussed this before in a post about Jennifer’s Choice.

Brain donation options

If you’d like to sign up for brain donation – then you can contact any one of the UK’s brain banks to find out more, and to sign up. You’ll need to do this until we change our system to an opt-out, rather than an opt-in one!

It doesn’t matter if you die with a healthy or a diseased brain – it will be of use in helping future generations – and potentially your loved ones and friends.

 

Jennifer’s Choice: Increasing Organ Donation Rates

organ donation promotionI was touched this evening to see a new fan page on Facebook – Jennifer’s Choice. I’ve posted details of Jennifer’s story below:

Jennifer was born on 12th June 1985 with Cystic Fibrosis. The symptoms of the disease meant she would have a life that would last no longer than her late teens. As a child Jennifer was happy, bright and optimistic. She became an exceptional student and went on to complete a University degree, along with an MA. She always had an unfaltering fighting spirit and with the advent of improved medication, her life expectancy was extended.
But as predicted, her condition deteriorated and in October 2009 she was registered on the lung transplant list. After an 18 month wait, she received a double lung transplant. With much relief it was a great success and Jennifer felt she had been gifted a second chance. In the autumn of 2011 she was able to enjoy a very special day, when she married David, her boyfriend of 4 years.

But less than a year after the operation, the newly married couple’s hopes were shattered when Jennifer was diagnosed with lung cancer. She was told at this time that her donor was a middle-aged person, who smoked 20 cigarettes a day. By the time of diagnosis, the cancer had already spread through her body.

Jennifer maintained her fighting spirit throughout but inevitably, at 9pm Friday 24th August 2012, at home with her family by her side, Jennifer sadly passed away, aged 27.

Jennifer’s fighting spirit lives on and it has inspired us to create a positive and significant change. There is a real shortage of organ donors, 90% of people have already expressed their support for organ donation, but only 29% have registered. Doctors are having to use organs which carry an even higher risk in order to give those in desperate need of a transplant a chance. In the three year period from 1 April 2009 to 31 March 2012, 39% of lung transplants were from donors with a past history of smoking.

 

Our aim is to ensure those waiting for a transplant are informed of all factors which present a higher risk to their health and to make people in good health aware of what a wonderful thing it is to help save someone’s life and give your organs a second life. Think how amazing it would be for your lungs to enable someone to breathe or your eyes to allow someone to see again. Think how incredible it would be to allow someone to live.

I did not know Jennifer, although she was a close friend of a close friend of mine, so I have no direct connection to the campaign. However, the story struck me as so terribly sad – that a young woman should survive so much, only to be brought down by something which was not her fault. This may well be the nature of life, but this sort of situation is preventable.

If more organs were donated in the UK, then this would have been far less likely to happen as Doctors would have the choice to reject lungs from smokers, or other organs potentially damaged by the donor’s lifestyle. However, in the UK right now we have an “opt in” system. That means that the default setting is NOT to donate organs. In my view, this is such a foolish system… we know from endless psychology and behavioural economics research that the vast majority of people are too lazy to change from the default – whatever that is. Hence why we end up with magazine subscriptions we don’t want for years and years, after signing up for “3 free issues”.

In countries where an “opt out” system is used for organ donation – compliance is often near 100%. For example: Germany has an opt-in system – 12% donate organs. Austria has an opt-out system – 98% donate organs. And that comparison is a useful one, I think – not like comparing apples and oranges. Germany and Austria are similar in many ways including socio-economically.

I hope that campaigns like Jennifer’s Choice will start to build momentum and put pressure on the government to implement an opt-out system, where the default is that it is assumed that every person will donate their organs should they meet with an untimely death. I mean, what use is it for your organs to be incinerated or in a ditch, rather than potentially sustaining life for another human being. What a beautiful gift to give – far more than any amount of money and possessions left in a will could ever be!

So, please head over and join the page on Facebook – follow the campaigns progress, and help bring about an opt-out system for organ donation in the UK!