Time to Talk

Just in case: I intend to reduce the increasing demand for hospital ventilators by one—my own. For a couple of years now, I’ve had a lime-green card hanging on my refrigerator, signed by myself and my primary care provider, stating clearly: “Do not use intubation or mechanical ventilation.” My PCP emphasized my wishes, printing above her signature: “No intubation if needed.”

The lime-green POLST is clearly visible, even on my crowded refrigerator

The lime-green card is Washington state’s “POLST,” Physician’s Orders for Life Sustaining Treatments. It summarizes my wishes for end-of-life medical treatment. EMTs, when answering an emergency call to a home, are trained to look on the fridge for the POLST, which is highly visible on most refrigerators amidst photos of grandchildren, pets, and favorite vacation spots. It’s generally used in conjunction with a longer, more detailed advance directive. I have one of those, too. The format I used is called “Five Wishes,” and three of my family members have a copy.

I am not against Covid-19 patients or anyone else going on ventilators. I’m suggesting that during this extra time we have at home, this time of too much TV and other distractions, we could/should be thinking, praying, and talking with family about end-of-life choices. The Conversation Project offers these eye-opening numbers: 97 percent of people say it’s important to put their wishes in writing, but only 37 percent have actually done it; 92 percent of people say talking to loved ones about end-of-life wishes is important, but only 32 percent have actually done so.

My reasons for rejecting intubation for myself are deeply personal. I have a healthy fear of dying and a  Christian’s “mustard seed” of faith, which I’m told is adequate. I’ve never been on a ventilator but close enough. My late husband was intubated and successfully weaned from a ventilator twice. The first time was the day of the stroke that paralyzed him. I was not present but anxiously driving the hundred miles to the hospital, where John had been transported by ambulance. Because he had no advance directive, no DNR (do not resuscitate) orders, the default treatment was intubation. Several days later, he could breathe on his own, which was about all he could do.

The second time, a few years later, I was at his side in the emergency room. Still John had no DNR. His doctor assured me that without intubation, “John will most surely die.” I gave the go-ahead and watched as the ER doctor tried and failed to force the tube down John’s throat, tried and failed again, quickly stepped aside and motioned to the respiratory therapist, who successfully intubated on the third try. To my inexperienced eyes, the procedure was nothing less than violent.

After John was successfully weaned a second time, we were warned that if he were ever intubated again, he would be on a ventilator permanently. I was grateful for every day John lived after his stroke, but I told him forthrightly, I could not make the decision again. This had to be his choice. In conference with his doctor and me, he gave instructions for filling out the POLST. No more extraordinary life-saving measures. Years later, he died in my arms at home. His willingness to make his own choice was the greatest gift he could have given me. He allowed me to continue living without guilt.

It’s too early in this pandemic to know how much help ventilators will be. A very, very early study based on the first hundred patients in China hints that Covid-19 patients on ventilators may have a higher mortality rate than other ventilator patients. Initial studies from Seattle indicated Covid-19 patients require longer stays on a ventilator.

Here’s what I do know: Most people will not get Covid-19 and of those who do, most will not die. We are distancing ourselves from each other not so much to protect ourselves but because we care for each other. We are limiting the pathways through which this potentially lethal virus can travel. And if worse comes to worse, one more thing I know for sure: it’s far easier for families if a patient makes her wishes known in advance, saving them the burden of withdrawing intervention when it’s time to let go.

For readers wishing authoritative information about intubation process and possible aftermaths, the New York Times published this piece April 4 by a doctor of internal medicine, who also advocates for advanced planning: What you should know before you need a ventilator.

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