Luann’s Story

“Let’s not talk about this now.”

Whenever I wanted to have a conversation about end-of-life wishes with my family, I came up against both internal and external resistance – a kind of “let’s not talk about this now” reaction – from both myself and my husband, Bob.

We have three adult children (Maria, Jack, and Anna) who live out of state. When they come home, it is because of a holiday or a much-anticipated family celebration such as a wedding or birthday. So how do you say to your family, “Merry Christmas! Let’s talk about my advance directive!!” You get the picture.

I am the Outreach Manager for Sharon S. Richardson Community Hospice, which means that I manage all our community education. I educate people on having end-of-life conversations and advocate for everyone to complete an advance directive. But when it came to my own end-of-life conversation, I struggled. It took two years to create the right opportunity. And it turned out to be the most wonderful conversation for all.

How it came about

Bob was running his first full marathon, and Maria and Anna were joining him. Jack and I would cheer them on. The marathon is called ‘Grandma’s Run’ and occurs each year in Duluth, MN. We rented a house on a small lake and planned on having a long weekend together. Ding, ding: a light bulb went on inside my head! Why not take this opportunity for Bob and me to talk about our advance directives? After all, the runners would have sore muscles and be sedentary, making for the perfect captive audience.

Our whole family loves to read and have deep discussions, so I sent everyone the book, Being Mortal, by Atul Gawande. I thought that warming up with a book discussion would help transition to a more personal conversation. And I was right.

One beautiful Sunday morning, we did what we always do when we are together: we made a big breakfast. And there we were, together at the table, sharing a meal and talking about Being Mortal. As the conversation unfolded, so did our hearts. Finally, the appropriate time came to talk about Bob and my end-of-life wishes. I can only say that my children engaged with great thoughtfulness, tenderness, and at times, humor. They asked excellent questions and expressed support. There were tears and smiles.

Lessons Learned

1. I am so grateful that Bob and I took the time to have an end-of-life talk before a crisis. We were able to talk under healthy, normal, and loving conditions. We didn’t have this talk in an ER or because of a terminal diagnosis or accident.
2. We now all feel better prepared, both logistically and emotionally.
3. End-of-life conversations are not “one and done”; there will be other conversations as Bob and I age. We will learn more about medical interventions, disease processes, and our own needs, all of which will shape future discussions.
4. I believe that we left a great gift to our children. I will not be able to control everything at the end of my life, but I can leave my children with peace of mind. I hope we helped limit struggles with assumptions, guessing, wondering, and regret. And in some way, I hope that this sense of certainty helps them be at peace.
5. I wish everyone would have early end-of-life conversations.

I leave you with my favorite quote:

Bob’s Story

My wife spoke the words I did not want to hear, “Bob, we need to have the conversation.” But Luann works for hospice in an education-focused role, and I knew that we would be practicing what she preaches at some point.

“The conversation” refers to having a conversation with our children about our advance directives. It’s not exactly your typical brunch conversation. “Hey kids, someday your mom and I are going to die, and usually the process requires decisions around the quality of our end of life… and, oh yes, please pass the muffins.” Yikes!

Understandably I had some trepidation. Partly because it seemed like an awkward conversation, but mostly I was nervous because I knew this meant I needed to spend time reflecting on my own end of life. I was in denial when it came to the advance directive; I thought it was too soon or maybe not all that necessary. After all, isn’t this something old people do?

Luann handed me the form, and I began to fill it out. When it was complete, we reviewed our advance directives with each other. We shared our thoughts and fears and talked about seemingly obvious and yet not fully understood considerations. (I now know that for Luann, there will not be a Packer Game on in the background…). The process was eye-opening, and I realized that if the questions were difficult for me now, they would only be that much more difficult for my family if everything was left unspoken and unanswered.

Luann, of course, quickly pointed out that we were not done and that we now needed to communicate this to our adult children. “Really?” I thought, “It’s all written down. Do we really need to talk about it more? They’re adults; they can read.” But Luann was firm. “Do you honestly want this information revealed to our children only when we are in a crisis?” She was right.

So, we planned a brunch. As it turned out, we were planning to get together for ‘Grandma’s Marathon’ in Duluth, MN. It would be my and our youngest daughter’s first marathon. The whole family was getting together to run or cheer, so Luann felt the timing was perfect. Luann arranged for us to have a brunch the day after the marathon to discuss our directives specifically. I was hoping that we would quickly end up chatting about our running time splits and how we felt at Lemon Drop Hill, but I knew it was essential to try and have the more difficult conversation.

To my surprise, our children showed no hesitation. They were more than willing to listen, question, and even add a little humor to the discussion. We talked about the power of health, comfort care, and our hope for a quality of end of life. Each of our children learned what we wanted from them and how we expected they might help us navigate the end of our lives. As the discussion went on, I could see each of my children reflect on their own end-of-life considerations and recognize why they too should fill out an advance directive.  

What I thought might be a short discourse turned into a very thoughtful and engaging conversation that went well into the afternoon. I am more than grateful that Luann challenged our family to discuss this. It was a lovely brunch; we all learned a little more about each other. And yes, the muffins were good too!