It’s Always Too Soon Until It’s Too Late: Having End-of-life Conversations in Your Twenties
| Wednesday, April 15, 2015
Mandy Ferguson is Project Coordinator for The Conversation Project at IHI.
When I tell most of my friends about my job at The Conversation Project, I can see their eyes glaze over. They immediately assume, as I once did, that this project — making sure that everyone’s wishes for end-of-life care are both expressed and respected — is for the old and frail. Unless they’ve had a direct experience with the death of a close family member or friend, my twenty-something peers don’t think this initiative relates to them. I always have to fight off the urge to shake them and tell them why this so important — for everyone, not just our frail grandparents. Two years ago, I had an experience that challenged my own initial assumptions about who needs to have end-of-life conversations.
My mom is my best friend. That may seem unconventional, or strange, or undesirable — especially for a 25-year-old, but she is undoubtedly my closest confidant and biggest supporter. She and I talk about anything and everything — from dating woes and mishaps to career advice; nothing is off limits. So it wasn’t surprising that she was the first person I called when IHI offered me my first “grown-up” job right out of college as a project coordinator for a new initiative called The Conversation Project. I would be working with Pulitzer Prize-winning journalist Ellen Goodman. My mom was beaming with pride. She was so excited that I had found a full-time job at such a well-respected institution.
Fast-forward to 2013, and I had spent nearly a year with the project and as part of the IHI family. I had read and heard stories from people throughout the United States about deaths that were especially hard for family members and loved ones. I also heard about those that were easier than expected, with less suffering and uncertainty for survivors. The difference between a “good” death and a “hard” death often seemed to be whether or not there had been a conversation among loved ones about values and goals for end-of-life care.
Even though I had heard all of this each and every day I came to work, it never occurred to me that these conversations could apply to me. I was only 22 — why would I need to have “the conversation” with anyone? My parents and brother were healthy and active, and I hadn’t missed a day of work since I started. I could see how valuable this conversation was for others, baby boomers with aging parents or families with terminally ill family members, but I just didn’t need it for myself.
One day during that summer, I gave my mom a call at our normal time — 5:15, during my walk from work to my apartment. It gave us the perfect 30-minute window where we could catch up on each other’s days and talk about plans for the evening or the following day. When she picked up the phone, I could immediately tell that something was wrong. She started talking a mile a minute about her doctor’s appointment that afternoon.
My mind started going foggy and I could barely keep up with what she was saying. “They were checking my ears and eyes…found something strange…did a head CT…MRI…brain tumor.” My heart sank into my stomach and I immediately started to cry. My mom did her best to comfort me — she told me that she had already found the best surgeon in Chicago and that she was going to have surgery with a very high chance for success. All I could hear, however, were the words “brain tumor” repeating over and over again in my mind.
As I sat in my apartment that evening, I started thinking to myself — what if things go wrong? I realized I had no idea what my mom would want for care if things didn’t go as planned. Did Dad know? Did her siblings know? Did anyone know? I called my dad to talk to him about what we should do. He agreed that he could use some clarity around what Mom would want if things didn’t go as we all wanted.
I flew from Boston to Chicago to spend some time with my mom before her surgery. We spent some wonderful time together—strolling through the farmer’s market in our hometown and eating dinner together as a family every night. I made sure that my Dad knew what she would want if something didn’t go as planned and who she trusted to speak on her behalf. I left Chicago feeling relieved — even though the surgery hadn’t even happened yet.
I am beyond happy to report that my mom has made a full recovery and is doing extremely well. She has been astonishingly brave and strong. Her hope and positive outlook never wavered once.
My experience with my mom brought home to me that The Conversation Project is about values — how you want to live at the end of your life, not how do you want to die. As the youngest member of The Conversation Project team, I have made it my goal to make sure that the message about the importance of having these conversations makes it to the millennial generation. We will all be caretakers one day, some of us sooner than others.
It is so important to know what your loved ones would want in advance of a crisis — and we can help! There are great stories of people having these conversations on our website (some young and some old), and a step-by-step guide to starting these conversations with loved ones called the “Conversation Starter Kit.” People tell us all the time that these conversations are some of the richest, most wonderful talks they’ve ever had. Someone told our team that this conversation is a gift that you give your family; I couldn’t agree more. It’s a gift that lessens suffering and bereavement and alleviates uncertainty and guilt. It’s a gift that we need to give each other. There’s never a perfect time to start talking about this, but the most important thing is to get a dialogue started. Because, as we always say at here at The Conversation Project, “It’s always too soon, until it’s too late.”