End of Life Planning: What You Need to Know About Brain Donation

The largest population bump ever – the Baby Boomer generation – has aged into retirement, so it’s easy to find all kinds of guidance about end-of-life planning. We’re all getting tons of advice about what paperwork should be collected, stored safely and made easily available to family, survivors and heirs. There are countless articles about going through our things and purging now, so that kids aren’t left with the burden of clearing out belongings and property. And of course, there is even more information about managing money and assets. Finally, there’s how we want family to deal with our death in terms of our physical selves. Burial? Funeral? Cremation? Body Donation? Do any arrangements need to be made in advance? So of course, it makes sense to give some thought to what we’re going to leave behind and how to simplify, organize and gift.

What’s missing from the list for consideration is this: the brain. Or worse, incomplete consideration. That happens when there is only some mention of brain donation in a will or directive. It’s disappointing, or in many cases downright upsetting, to family because by the time it’s appropriate to check those documents, it’s too late to consider donating their loved one’s brain. The result? The final wishes of the deceased cannot be followed, and no one feels great about that.

The solution is simple whether you’re the person doing the planning or advising someone else who is making these decisions. There are three steps:

1. Consider brain donation. There’s a critical need for both diseased brains and healthy ones to advance neuroscience and improve brain health for future generations. Learn more at braindonorproject.org.
2. Pre-register at braindonorproject.org/brain-pre-registration. When the packet of registration forms arrives (via email or USPS; you choose) complete them and return to the brain bank as directed. Follow up within two weeks to confirm.
3. Talk to family about what needs to be done when the time comes and make sure the directions and the 24/7 phone number to the brain bank are readily available.

Some argue it’s the most precious gift. Science needs post-mortem human brain tissue for neuroscience research to get to the next big breakthrough. With nearly one in five of us affected by a neurologic disorder, the answers just can’t come fast enough.