I've seen the signed forms. Notarized, filed, sitting in a drawer, and never mentioned to a single person who'd have to act on them.
The paperwork existed in a strictly technical sense. It did none of its job. The family didn't know it was there. The doctor had never seen it. When the moment arrived that the document was written for, it might as well have been blank.
Here's my position: the conversation with your circle is the most important part of advance care planning. The form is the receipt.
Advance Care Planning Has Three Parts, and the Form Is the Easy One
Advance care planning means three things. Name what matters enough that you'd refuse treatment without it. Name someone to speak for you when you can't. Get both written down and discussed before a crisis forces the issue. The paperwork covers only the documentation, and that's the easiest part by a wide margin.
I've sat with people who filled out a directive in twenty minutes, got it notarized and never spoke of it again. They treated the signature as the finish line. It was only the recap of a conversation that, in their case, never happened. That's exactly why their families still don't know the document exists.
Young, Healthy Adults Skip It Most and Carry the Real Risk
A 2025 study out of Florida Atlantic University found that around a third of healthy adults complete an advance directive. For college-aged adults the rate runs lower still. That inverts the actual risk. The data on young adults is worth reading.
I've had a friend diagnosed with colon cancer at 25. Another friend has been a paraplegic since a car accident in her twenties, unable to communicate, still alive decades later. Neither had any reason to expect what happened. The people least likely to plan for a medical crisis are often the people closest to one without knowing it.
Self-Discovery Comes Before Any Legal Document
Before anyone fills out paperwork with me, I ask what they love about their life. Specifically. The abstract version of that question gets an abstract answer, and an abstract answer is useless when you're standing in a hospital hallway trying to apply it.
I have two cats. Losing the ability to interact with them matters to my own answer in a way "quality of life" never could. I run these sessions live over Zoom, one on one, recorded so I can stay in the conversation instead of taking notes. Step by step, I draw people toward what they need to hear from themselves before they can answer a checkbox honestly. These are the five questions I start with.
Full Code Is a Decision, Not a Checkbox
When I did my own directive during death doula training, it confronted me enough that I left it on my desk for weeks. That surprised me. I'm usually decisive.
What I landed on was specific. If reviving me takes CPR forceful enough to break my ribs, I don't want it. A minor cardiac event with a quick response is fine with me. Those are two very different scenarios wearing the same "full code" label on a form. Someone else might choose full code and mean all of it, fully understanding what it costs physically. That's an equally legitimate choice, as long as they worked through it instead of checking it by default. What full code actually involves.
Your Proxy Needs Your Reasoning, Not Just Your Name
A healthcare proxy's job is to communicate wishes you've already documented and discussed. Not to improvise on your behalf in a hospital corridor under pressure. Naming someone on a form accomplishes almost nothing if they don't know the reasoning behind each choice.
Tell them what full code means for you. Tell them what quality of life you'd need to keep going. Then say it again, more than once over time, because people forget conversations they only had a single time, especially when they have to act on them months or years later. Choosing a proxy, step by step.
I'm developing a guided Advance Care Planning course built around exactly this process: self-discovery before paperwork. It isn't available yet. An introductory consultation is open now for anyone who wants to start the conversation sooner. Reach me through my profile.
Sources cited
- Giovanetti, Florida Atlantic University, 2025, From Awareness to Action: Improving Advanced Directives with the Five Wishes in College Aged Young Adults
- CDC provisional drug overdose data, 2024, reported via KFF
- Valenti et al., National Institutes of Health, 2025, The Prevalence of Advance Directives and Its Moderators
