This week, in honor of National Healthcare Decisions Day, I decided to review my living will and have an end-of-life conversation with my husband (fun, right?) A living will says how you want treatment decisions to be made for you at the end of your life (or any time you can’t speak for yourself.) My living will is super basic. In fact, it’s the free form I downloaded from the Illinois Department of Health.
It basically says this:
“If at any time I should have an incurable and irreversible injury, disease, or illness judged to be a terminal condition by my attending physician who has personally examined me and has determined that my death is imminent except for death delaying procedures, I direct that such procedures which would only prolong the dying process be withheld or withdrawn, and that I be permitted to die naturally with only the administration of medication, sustenance, or the performance of any medical procedure deemed necessary by my attending physician to provide me with comfort care.”
This still sounds about right to me, but it kind of leaves everything up to the discretion of the “attending physician” (who I may or may not know.) I have a sense that I’d like to give a little more guidance than “let the doctor decide” — but what?
I’ve been following the work of the non-profit The Conversation Project for the last several years, so I downloaded their free starter kit workbook. It shares questions and tips for thinking through (and talking with others about) your end-of-life wishes. I decided to fill it out, then ambush my husband on our weekly date night with an end-of-life conversation. Death over dinner, anyone? 🙂
The workbook has some thoughtful questions in a simple format that looks like a bit like a form. It looked simple, but it was a pretty hard “test”. If you had a terminal illness, would you prefer not to know how quickly it is progressing or know your doctor’s best estimation of how long you have to live? How long do you want to receive medical care? Are you more concerned about not getting enough care or getting overly aggressive treatment?
Thinking through what I want at the end-of-life put me in a loop of “it depends” logic. It felt a little like playing an especially wicked game of “Would You Rather…?” Would I rather walk knee deep through fish guts, or walk through a dark cave of thick spider webs? (Question from my kids’ game.) Would I rather maintain my physical health or my mental capacity? (My question.) Would I rather spend my last days in a healthcare facility or at home? (Starter kit question.)
As I looped through various if / then scenarios, I found exceptions to what I’d want in nearly every case. If machines or poor health prevent me from going outside to feel the wind on my skin, I don’t want to receive aggressive medical treatment…unless the treatment could allow me to regain some of my abilities. When the time comes, I want to be alone…unless being with me is going to help someone I love process what is happening. I want to share what’s going on with my health with my family…unless it’s too stressful for them.
So here’s my first realization: my end-of-life care wishes depend on factors I can’t know about right now.
There are too many variables and too many unknowns to solve this equation. That surprised me a little bit (don’t laugh!) I’d love to lay it out clearly, but it’s impossible for me to give my family rules to follow here. I’ve done the paperwork giving them the legal standing to have a seat at the table, but when things really go down? They’re just going to have to figure it out. And I’m going to have to trust their judgment.
This led me to my second surprise: my end-of-life wishes need to be about what I want people to know about who I am, not what I want them to “do” if things go south.
Once I realized this, my end-of-life conversation led — perhaps inevitably — to a really fun conversation about life and what I think makes it worth living.
What’s your “why”, and have you talked about it with those you love? Have you had “the conversation”? I highly recommend it!
Have you had “the conversation”? Here are some resources to get started:
- The Conversation Project Starter Kit Free workbook to help you prepare for “the conversation.”
- Medicare Overview of Advance Directives Learn more about advance care planning and get help locating your state-specific forms.
- Death Over Dinner More help and great reference section to trigger “the most important conversation America isn’t having”…over dinner.
- Estate Planning Basics from Life in Motion Guide.