What You Need to Know About End-of-Life Planning

What you need to know about end-of-life planning must become a conversation before it’s too late.

Barbara Brotman is a Chicago Tribune reporter, wife and mom. But she’s a mom who was gutsy enough to use a family holiday dinner to have a crucial conversation most of us would run miles from: the end-of-life conversation. Calling it a non-traditional holiday activity, Brotman used the opportunity to get her husband, 22 and 25-year-old daughters (and herself, of course) to complete their Advance Directives.

1. What was it that prompted you to get your family to discuss end-of-life care issues at a holiday gathering?
I’ve done a lot of stories on end of life issues and advance directives, and I remembered experts saying that everyone over 18 should have them – and that the hardest cases, the ones that led to the famous and heartbreaking legal battles, involve young people who didn’t. My husband and I were planning to have our daughters sit down with us and a lawyer when we did our estate planning documents, and our own advance directives. The lawyer suggested that the girls sign directives of their own. Because we knew we were going to have this meeting, we sat down and talked with the girls about our own wishes should we be unconscious, and theirs in case they were.

2. How did your 22- and 25-year-old daughters buy into the idea?
They weren’t eager. They accepted it as a conversation we had to have, and engaged in it willingly, but no one wanted it to be a long one.

3. How did these dining room conversations go?
They probably weren’t as specific as experts like Dr. Julie Goldstein, a founder of the Chicago End-of-Life Care Coalition, had with her teenage and young adult daughters. Dr. Goldstein, who trains healthcare professionals in how to lead these discussions, said she planned to ask her daughters over the holidays what they valued most about life, and what abilities, senses or experiences defined life so fundamentally to them that they would not want to live without them. My husband and I first talked to our girls about our own wishes, since we were making them our healthcare agents. We didn’t get into specifics, partly because it’s so hard to know exactly what might happen in the future and partly because, frankly, it’s so unpleasant. We just asked them to use their judgment about our quality of life and chances of recovery, and act in our best interests. And we had the same conversation with them about their wishes, since they were appointing us as their agents. That conversation went pretty much the same. Some experts would say that we skated too casually over this, but we did as best we could. The experts also say that the conversation should be ongoing – especially as people age or get sick. So I’m sure we’ll revisit it (unfortunately!).

4. How would you suggest people get started talking about this difficult topic with their family members?
I would be matter-of-fact: These are documents every adult should have, and completing them requires a conversation. You never know what life holds, and it’s highly unlikely that 20-year-olds will end up needing healthcare proxies or advance directives. But better to have them, and have the conversation – and then you can put it out of your mind.

5. Can you point us to some useful websites to get the process of doing Advance Directives started?
Longtime journalist Ellen Goodman has founded an organization, The Conversation Project, dedicated to encouraging people to have these talks.  https://theconversationproject.org/about/ellen-goodman/

National Health Care Decisions Day, which is on April 16, is a national campaign to encourage people to make end of life care plans. Information is here: https://www.nhdd.org/

Five Wishes, a widely used living will, is available here : https://www.agingwithdignity.org/five-wishes.php

What you need to know about end-of-life planning is worth the time and the education. Make it a priority.