They Will Have to Guess

Someday somebody will make a decision about you and will not be able to ask. What you write down now is the only thing standing between them and guessing.

Why would I write anything down?

Because the people who love you are going to be asked questions about you, and they will answer from memory, guesswork, and whatever they think you would have wanted.

Some of those questions are small. Does she like the radio on. Does he want the curtains open. Would she rather be cold or have a blanket over her.

Some are not small at all. Where should she live. Does he want to go to the hospital. What would she have said about this.

Right now you are the only person who knows the answers. Later, somebody will need them and you may not be able to hand them over. That is the whole reason, and there is not a more complicated one.

What am I supposed to write?

Ordinary things. The smaller and more specific, the more useful they turn out to be.

People expect this to be about big statements. It mostly is not. The things that end up mattering are the ones nobody would think to ask.

Some prompts that get people started:

• What calms me. The radio low rather than the television. Being told what is about to happen before it happens. Somebody sitting down instead of standing over me. Being outside.
• What upsets me, and what to do when it happens. Not being rushed. Being talked about while I am in the room. Too many people at once.
• How I like ordinary things. Coffee, food, the time I get up, how warm the room is, whether I want the door open.
• What I want people to keep doing even if I do not seem to notice — music, being taken outside, being read to, being told the truth.
• Who I want near me, and honestly, who I do not.
• What I would refuse, if I could still say it.
• What I want people to know about me — who I was, what I did, what I was proud of, what I found funny.
• What I want said, and by whom, at the end.

You do not have to answer all of it. Three answers written down beat a whole page thought about.

Isn't this morbid?

Most people expect it to feel like giving up, and then find it feels like the opposite.

It is a fair thing to be wary of. Sitting down to write what you want when you cannot speak for yourself sounds like an act of surrender.

In practice people describe it differently. Nearly everything about a diagnosis takes decisions away from you. This is one of the few things that hands some back. It is not a document about dying. It is a set of instructions for how you would like to be treated while you are still very much here.

And there is something in it for the people who love you. Families who have this later describe it as the thing that let them make decisions without lying awake wondering whether they got it wrong. You are not only writing it for you.

Does it actually help, or does it just sound nice?

There is real evidence, and it is worth reporting the awkward part of it as well as the good part.

A structured version of this exists in medicine. It is called dignity therapy, developed by Harvey Chochinov: a guided conversation about your life and what you want remembered, recorded, transcribed and edited into a document you can give to your family.

In the first trial of 100 patients, most reported meaningful gains — 76% an increased sense of dignity, 68% a stronger sense of purpose, and 67% a stronger sense of meaning — and depressive symptoms and reported suffering fell. Families of people who did it also viewed it favorably.

The awkward part: a later, larger randomized trial comparing dignity therapy against other approaches found no significant difference on its primary measures of distress.

Both of those are true. The honest reading is that this is unlikely to change your scores on a psychological questionnaire, and that people who do it tend to find it worth having done, and their families tend to treasure the document. That seems like enough reason.

It has also been trialed specifically with people at the early stage of dementia and their families, rather than only in end-of-life care. This is not something you have to wait to be very unwell to do.

When should I do it?

Soon, and in small pieces. Not in one sitting, and not when you are having a bad day.

The reason for soon is simple and you already know it. This gets harder, and there is no warning bell.

The reason for small pieces is that this is tiring in a way people do not expect. Two or three answers is a good session. Coming back to it next week is normal. Changing your mind and crossing something out is normal too — nothing you write here is binding, and you are allowed to update it as often as you like.

Pick a good day. Not the day after a bad appointment.

What if writing is hard now?

Then do not write. Talk. It counts the same.

Writing is one of the things that can get difficult early, and struggling with a pen is a bad reason to lose the content.

Other ways that work as well or better:

• Record yourself on a phone. Voice memo, no editing, however rambling. Your voice is also worth having.
• Have somebody ask you the questions and write down your answers — in your words, not tidied up. Ask them to read it back so you can hear whether it sounds like you.
• Video, if you would rather be seen than read.
• A little at a time, into a notebook that stays open on the table rather than a project that requires setting up.

The point is your words, not your handwriting.

Who should have it?

More than one person, and they should know it exists before they need it.

A document nobody can find is a document that does not exist. So:

• Give a copy to whoever is named in your healthcare paperwork.
• Give one to somebody else as well — the person most likely to be in the room.
• Keep one where it can be found without a search: with the medical papers, or on the refrigerator, not in a locked drawer.
• If you go into a hospital or a nursing home, it goes with you. Staff who have never met you can read a page and know how to approach you.
• Tell people it exists. Say what it is. "This is how I want to be treated when I cannot tell you."

Where do I start?

With one sentence, today.

If the whole thing feels too big, write this one line and stop:

"When I am upset, the thing that helps most is ______."

That single sentence, in your handwriting, will be used more times than anything else you write.

We have built The Things I Want You To Know for this — a printable you fill in by hand, with the prompts already on the page, made for exactly this purpose and free. You do not have to start from a blank sheet.