Why Is Talking About Brain Donation So Hard? (And Why It’s Worth Having the Conversation)

Talking about brain donation isn’t always easy. Even people who feel strongly about contributing to scientific research may hesitate to share their wishes with family and friends. Even researchers, clinicians and healthcare providers feel uncomfortable about it – and they know how important it is to advance science. So what’s the problem? Could be that talking about brain donation feels too much like talking about death. And that’s a conversation many of us would rather avoid.

Here’s why it’s so touchy of a topic:

• We don’t want to upset the people we love. Discussing what happens after we’re gone can feel uncomfortable, especially with family members who may not be ready to think about losing someone they love.
• The brain feels especially personal. Unlike other organs, the brain is closely connected to our memories, personalities, and sense of identity. The idea of donating it may raise questions or emotions that people haven’t considered before.
• Brain donation is unfamiliar. While most people have heard of organ donation, fewer understand brain donation for research. Loved ones may have questions about how it works, whether it affects funeral arrangements, or why researchers need donated brain tissue.
• We don’t know how to start. It’s not exactly an everyday dinner-table topic. Even when we’ve made the decision to donate, finding the right moment to share it can be challenging.

Consider this: Talking about brain donation isn’t just a conversation about what happens after we die. It’s a conversation about what matters to us while we’re living.

Maybe that’s the place to start – by helping your family understand your intention to contribute…even if it’s for strangers down the road. For many of us, it speaks to our values. They may not be comfortable considering for themselves. At the moment. But you do need their buy-in for when the time comes. They’ll need to respect your wishes first to see them through.

It may feel awkward at first. Your family may have questions. On the other hand, you might find that they’re more comfortable talking about it than you expected. It’s a meaningful gift to make your wishes known, so no one has to make hard decisions about what you might have wanted.

Because one of the most meaningful gifts you can give your family is the peace of mind that comes from knowing your wishes. And one of the most meaningful gifts you can give future generations is the opportunity to advance our understanding of the human brain.

Visit the Brain Donor Project to learn more about brain donation and how to share your wishes with loved ones.