We all know that communicating our end-of-life care preferences is essential to receive the care we desire, but only one-third of us have done so. I was one of the majority of people without a plan, and I learned the hard way that dying in America is difficult. I failed at ensuring the best gift we can provide to a dying loved one: the care they desire at their most vulnerable time.
My husband Carlos was diagnosed with stage 4 colon cancer when he was 35. I was 27. The shock was so great that this was happening to us, and happening when it did, that neither one of us knew how to talk about what was tragically unfolding. I think Carlos didn’t want to hurt me, and I didn’t want to withdraw hope—or give up my own. I suppose I erroneously believed that by broaching the elephant in the room, it might come true. That was my own immaturity. We were two journalists who made a living communicating, asking hard questions, and talking about tough topics, but we could not talk about this.
Thirteen months after diagnosis, on a Sunday morning when I believed Carlos was feeling well enough for me to go into work, he suffered a pulmonary embolism. In one minute’s time, we went from making plans for our afternoon to him being unresponsive, uncommunicative, and on the floor. We had never discussed our plans for this.
I called 911, and the paramedics did exactly what they are tasked with doing. An overlooked fact of medicine is this: The only treatment ever administered for which no consent is needed is CPR.
I have no idea if he suffered, or how much. I hope he could hear his family who surrounded him. I hope he didn’t feel the weight of the high-impact interventions.
Sooner than I was prepared for, I found myself in an intensive care unit, facing a decision to withdraw life support. Why wasn’t I prepared? We were receiving care at one of the top hospitals in the nation. We were educated professionals, with resources and some level of health literacy. And yet I still found myself shell-shocked at treatment decisions. Meanwhile, Carlos was the statistic dying in a hospital, despite what I frankly can only assume was a hope to spend his final hours in peace and at home.
Ours was just one example of a widespread failure to take the steps we should before we are even ill. These are the steps we should have acknowledged once he got sick: accepting the reality of our mortality, discussing our goals of care, and infusing that conversation with our own beliefs and values. We didn’t think about how Carlos was going to do his own dying.
Today is National Health Care Decisions Day. It’s supposed to be a nationwide day of health engagement, with the goal of ensuring our own end-of-life care is more thoughtfully informed. Communicating our wishes is the best and proven way to receive the care we desire.
It’s the most painless, low-cost, and low-impact medical intervention that exists. This discussion can reap even more benefits than solely realizing our preferences. Planning ahead helps us prepare mentally and emotionally for the inevitable. It supports the concerns of those with terminal illness: clear communication and shared decision-making. Planning reduces decisional conflict and stress as well as anxiety and depression among those who survive us. Take it from me, that last one is important.
The most common refrain from those who have yet to communicate their care wishes is the rationale for so many essentials we haven’t made time for: “I’ll get to it, eventually.” This perspective needs reframing. An end-of-life conversation isn’t a to-do to cross off our list, but an ongoing dialogue with loved ones about values, goals, and beliefs. Get to know your family better today. Share your vision of what living well means to you. Ask loved ones what gives their lives meaning, or what they couldn’t imagine living without.
Today is the day to start talking. Don’t wait like I did.