Insurance companies require doctors to ask dozens of questions and click on carpal-tunnel inducing boxes during a yearly physical. However, none of those questions or boxes address one of the most important aspects of a person’s life, their death. So, as a family doctor, I encourage people to think about it, have “the conversation” with loved ones, and complete the paperwork.
I’m also married to a doctor, so the conversation is (relatively) easy for us; we have a lot of practice. But most people don’t, and in the current pandemic, it’s not something you can put off any longer. Now, more than ever, you need to have multiple conversations. Why?
It helps normalize the topic. Every family has members who stick their fingers in their ears and hum the Looney Tunes song the first seven times you bring it up. But, eventually, they’ll come around when they realize why it’s important.
Without the conversation, you give up control over the final act of your life. Every person, after reflecting upon their deepest held beliefs and priorities, can answer the question: “What would be your ideal death?”
Most people say they want to live a full life but not grow so old or ill that they lose a significant quality of life. Then they want to die at home, surrounded by loved ones. I have yet to meet someone who says, “I’d like to lose control of multiple physical and cognitive abilities, then die in an ICU with a breathing tube while a resident splinters my ribs with chest compressions and electrocutes my irreversibly dead heart.” Or, “I want to be tortured with dialysis and a feeding tube for weeks or months before I die alone in a nursing home.”
I know, that seems harsh. That’s why a lot of doctors don’t prompt this conversation until patients are already very ill, leaving the family to guess what the person would have said, had they had the conversation earlier. I’m not going to lie to you; it does suck to be the person who forces people to look at this reality. But it’s my job and, frankly, my privilege to offer the peace of mind that comes with having control over the end of one’s life. After all, the biggest fears around death are the unknown, the loss of control.
I also think it shouldn’t only be health care providers who know the reality of an undiscussed death. Studies show that most physicians will choose hospice early if they have a terminal disease and will opt for a “do not resuscitate” order when they are elderly or otherwise near the end of life. But 80 percent of laypeople in the U.S. die in a hospital or nursing home, without an advanced directive.
The truth is not enough doctors discuss the end of life with patients. And when they do, it’s often like this: “If your heart stops, do you want to be resuscitated? If you can’t breathe, do you want a ventilator? If your kidneys fail, do you want dialysis? If you can’t eat, do you want a feeding tube, so you don’t starve to death?” Of course, people say yes! Common sense and the fairytale depictions of CPR in TV and movies suggest these are obvious decisions. Ah yes, TV and movies, sign. More than half of fictional victims survive CPR. In reality, the statistics are much more sobering.
And frankly, even when a doctor wants to provide all the information and get to know the patient well enough to help them decide, we don’t get nearly enough time.
To give you a more realistic perspective, I’ll provide some basic statistics. However, by far the most important things to ponder and define are: What does “quality of life” mean to me? What makes life worth living: physically, emotionally, spiritually? How much am I willing to risk losing?
OK, the hard numbers. The odds of CPR being successful depends on age, overall health, and what prompts the need for resuscitation (e.g., a massive heart attack in an 80 year old versus trauma in a 35 year old), and whether the event occurs in or outside of the hospital. Outside the hospital, the highest survival rate is for 35 to 64 year olds. And it is 12 percent. It drops to 9 percent for 65 to 74 year olds and 4 percent if you’re over 80. For patients of all ages who are already hospitalized, only 18 percent will survive to be discharged. Of those, about half will have neurologic disabilities.
Decisions about CPR, ventilators, feeding tubes, and dialysis can be outlined on a form called an “order for life-sustaining treatment.” You also need to complete a health care proxy. If you don’t and you are unable to speak for yourself, your entire dysfunctional family gets to fight over every decision. Even if you have the perfect family (you do not), please designate a single spokesperson. Someone with whom you have often had the conversation.
But even before those decisions, there are many smaller decisions that alter what leads up to the final scene. Each decision is complicated and difficult. But if you’ve spent time thinking about your priorities, explaining them to loved ones, and writing them down, each decision becomes easier. A deep understanding of your priorities cuts a path through the dense jungle of health care.
So, in summary, if I could have one wish, it would be, like Steve Martin, “that all the children of the world could join hands and sing together in the spirit of harmony and peace.” But if I had a second wish, it would be that doctors had the time to have meaningful conversations about the medical and personal/spiritual side of advanced directives. But they don’t. So you have to do it. For yourself. For your loved ones. Starting today. Now.
Ylfa Perry is a family physician.
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