“What does a good day look like?” “What matters to me through the end of my life is…”
To me, open-ended questions like these seemed challenging at first because the answers can change significantly, due to changes in circumstances and medical conditions. However, with the right tools, I found I do have answers that I want to share – I just needed support to get there.
There’s never a convenient time to think about what we want through the end of life, so why not plan for it, just like any other long-term plan to purchase a home, go on a big trip, or prepare for retirement? Our timing can adjust but the event will not be as scary because we have prepared.
Of course, plenty about our future is unknown. But taking the time to think about what matters is definitely within our control. I was looking on Google for resources and came across the Conversation Starter Guide. It’s a guided booklet to think about what matters to you in terms of health care or family needs and lets us write down our answers. Filling it out helps us to know ourselves better and connect with the people that we care about.
I reviewed the document online, and a few days later I printed it out at the Staples store. As I sat down to fill out my Conversation Starter Guide, I found Step 1 (“Think About What Matters to You”) hard because of all of the open-ended questions about what I want. These were difficult at first because what I pick today may not be relevant when I actually need it. My health may be poorer, my awareness may be less, I may be tired or worn out, completely unconscious, etc. I may also have different expectations then because I might have experienced a health issue of some kind in the meantime.
To keep from getting stuck or worse, abandoning the effort of completing the guide altogether, I used the standardized test-taking technique of answering what you can and going back to what you can’t. I started with Step 2, which offers specific questions related to patient care. That included things like “If you were seriously ill and near the end of your life, how much medical treatment would be right for you?”
The rating scales were things that I could complete easily, which gave me some accomplishment and momentum.
My favorite question in Step 2 (“Plan Your Talk”) was the summary question: “Look at your previous answers. What are the most important things for your friends, family, and health care team to understand about what matters most to you through the end of life?” I realized that really, it comes down to what I want for my children. I don’t want them to go through difficult decisions on my behalf, so I want things spelled out as clearly as possible. I have limited medical requests, beyond comfort.
Step 3 of the guide, titled “Start Talking,” covers how we will talk to family and friends about what matters to us and where we will have those conversations. I loved the suggested ways to start talking about the topic and the list of items that might need to be covered. I made notes in the margins.
One of my favorite parts was Step 4, “Keep Talking.” It points out that all of these items are really ongoing conversations. That was very reassuring. Perfection? Get it right the first time? One and done? Absolutely not. Whew! Ongoing conversations also serve the bigger picture, which is to make these conversations in our society more matter-of-fact, accepted, and common.
Finally, I went back to Step 1 and answered those open-ended questions. I gave simple answers that could change with circumstances, ultimately letting my family make a final decision based on what they know of me as a person. The questions weren’t so overwhelming after all, since I could revisit them next time I reviewed the guide to “Keep Talking.” As a product and experience designer, I was familiar with refining and editing concepts over time. Planning for my care through the end of life was no different. What a relief!
I put copies of my completed Conversation Starter Guide, along with computer password/access information, into some cool folders that I found while I was making photocopies at Staples. They were probably designed for kids but I thought they were fitting, with the star theme on the cover. From stardust we come and to stardust we return, right?
Before I left town for a cross-country move, I gave the folders to my family. I talked with my daughter at her apartment and then later, with my son and daughter-in-law at their house. It was matter-of-fact. “Oh, hey, I completed the start of my death documents. Here’s part one, just in case you need it before I hit the road for my trip. Here are some details.” I went through some of the pages. “So here…hang on to this folder for later. I’ll do the rest after the move, and we’ll talk again.”
I opened my calendar and marked a date when I would revisit the documents. I was done for now and that felt good. I had “practiced adulting,” as my grown-up kids would say.
Now on to continue living well by focusing on today.
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