As an emergency medicine doctor, I see a lot of confusion over end-of-life wishes. Keep an open conversation with your family and revisit often.
A woman speaks with her physician on medical treatment
This as-told-to essay is based on a conversation with Dr. Ferdinando Mirarchi, DO, founder and CEO of MIDEO Health. It has been edited for length and clarity.
When I was a medical intern, I was in the intensive care unit one day when a 55-year-old mother went into cardiac arrest. I ran in to shock her heart back to life when the nurses started waving papers at me. The woman had signed a “do not resuscitate” order, they said.
I was paralyzed. This lady was dying in front of me, and I knew I could save her quickly. Luckily, a cardiologist rushed in and restarted her heart. She eventually went home to her family.
A few years later, during my residency at a trauma center, a man in his 60s came in, very ill. He was septic and unresponsive, but I thought, “I’m not going to make that mistake again.” I started treating him aggressively until his wife came in and told me he had end-stage cancer and was in hospice. He just wanted to die without pain.
I realized that end-of-life care was a mess
I had made a life-and-death mistake on both sides. I had withheld treatment from a young, relatively healthy mom but over-treated a man who didn’t want aggressive intervention and would die anyway.
That’s when I realized that end-of-life care was a complete mess in our medical system. I started researching end-of-life wishes and wrote a book about living wills, which convey medical wishes. I conducted more research on how often people’s wishes are misinterpreted or misunderstood and eventually created a video-based advanced directive, which conveys your wishes if you’re unable to speak.
The issues around “do not resuscitate” orders (DNRs), advanced care directives, and living wills are complex and systemic. Still, we can’t shy away from conversations about medical wishes with our loved ones. Here’s how to have impactful discussions, and may reduce the risks of misinterpretation.
Recognize this is a hard conversation
There’s a misconception that talking about medical wishes can be simple, but it’s not. This is a hard conversation to have over a holiday dinner, asking Mom about her death and then saying, “Please pass the mashed potatoes.”
Still, the holidays and family gatherings can be a spot to start the conversation without getting into the nitty-gritty details. People avoid this conversation because taking action is hard, so even a small step forward is helpful.
Focus on safety, not death
Death can be scary. So, instead of starting the conversation focused on end-of-life issues, center it around patient safety. Say something like, “Mom and Dad, we want to do what’s right for you and make sure we’re keeping you safe.” Then, have a conversation about what safety means to each of you in a medical or care setting.
Set aside the idea of long-term life support
Some people think this conversion is black and white: do you want life support or not? But there’s a lot more nuance. While most people say they don’t want to live on machines, that doesn’t mean they should sign a DNR.
For example, if you have a heart attack, there are simple procedures that can save your life without impacting future quality of life. When you take the idea of long-term life support off the table, you can have a more detailed conversation about what your loved one really wants.
When in doubt, err on the side of intervention
Many times, life support can be used as a bridge while you learn more about someone’s condition. Remember, you can always start treatment, then decide to stop it. The opposite is not true—you can’t bring people back.
Put your opinions aside
Always keep the patient at the forefront, and emphasize that their healthcare is their decision, up to the end. You can say something like, “If you want aggressive care and treatment, that’s fine, but if you want something else, that’s OK too.” Many older patients are comfortable with death, but they never want to feel pushed toward decisions like signing a DNR.
Revisit the conversation
Choices around medical care look different as your life changes. I have an older mother and a 55-year-old brother who already went into cardiac arrest once and needed a life-saving bypass operation. As their health evolves, we update their wishes at least once a year. These are not one-and-done conversations.
Talk with a doctor
The choices around end-of-life care are very intense and nuanced. You may think you’re being clear, but to make sure your wishes are followed in an emergency, you must present them in a way that clinicians can follow when they only have seconds to decide what to do. As part of my practice, I now help patients and their loved ones articulate their wishes using the specific terms that physicians use.
After more than 25 years in emergency medicine, I’ve seen the problems with end-of-life care, but with more informed conversation and better means of communication, I’m confident we can reduce ambiguity and misinterpretation.