Trapped Inside Your Body: Would you Choose to Live

As someone who helps people plan their end-of-life wishes, I often discuss advance directives with clients to prepare for situations when they can’t speak for themselves and loved ones must make difficult decisions.

A recent story in The Atlantic highlights the emotional and ethical complexities that can arise after a serious injury. It recounts the experience of Ian Berg, a young man who was declared to be in a vegetative state following a devastating car accident. For years, doctors believed he had no awareness. But decades later, advanced brain scans confirmed what his mother had believed all along. He was conscious and aware of the world around him, but unable to respond.

Would You Want to Live Trapped Inside a Body That Can’t Communicate?

Let’s imagine for a moment. You’re aware. You hear everything. You recognize your loved ones. But you can’t move. You can’t speak. You can’t signal your thoughts or wishes. Would you want to live that way?

For some, the answer might be yes—if there’s a chance, however small, of recovery or connection. For others, the idea of being trapped in a body, unable to communicate or participate in a meaningful relationship, may feel terrifying – like living in a prison from which they cannot escape.

That’s why it’s so important to think through these possibilities ahead of time—before a crisis happens.

What Does This Mean for Your Advance Directive?

When you’re healthy, it’s hard to imagine being in a situation where you can’t express your wishes. But documenting your end-of-life wishes isn’t about being pessimistic—it’s about protecting yourself and giving your loved ones the guidance they’ll need if they are ever faced with making this difficult decision.

As you think through your advance directive, consider:

• Would you want life-sustaining treatment if there were even a slight chance you were aware?
• What kind of quality of life matters most to you? 
• Would you want to live indefinitely if you couldn’t have conversations, make decisions, or connect with the people you love?

Make Sure Your Plan Reflects What You Want

Here’s what I recommend to clients navigating these tough questions:

• Have specific conversations. Explain to your agent what’s important to you. What would make life meaningful? What would make it intolerable? The more your loved ones understand your wishes, the more confidently they can advocate for you if the time ever comes.
• Give your agent flexibility. Medical technology and diagnoses evolve. Make sure your healthcare proxy has the authority to make decisions in line with your values, even if circumstances change.
• Choose your agent carefully. Consider whether your agent will carry out your wishes or prioritize their emotional need for you to live, regardless of your wishes or quality of life.

Final Thoughts

Ian’s story reminds us how complex and fragile these situations can be. When loved ones are left to make life-or-death decisions without clear guidance, the burden can be overwhelming. Sharing your values and wishes in advance helps ease that weight, giving your agents the confidence to act—not based on guesswork, but following the guidance you have provided.

An experienced estate planning attorney can help you document your end-of-life wishes with clarity and compassion. To learn more, schedule an appointment by clicking here.