The COVID-19 pandemic is changing end-of-life care. We’re not ready.

The last thing Jessica said to John, her fiancé of 10 years, was, “I love you” before he drove to work. Hours later, after suddenly experiencing a cardiac arrest at the office, he was in an ICU bed attached to a ventilator. He was pale and unresponsive, on multiple medications to artificially augment his blood pressure, hooked up to a machine that did the work of his kidneys, and cooled to 91.4°F to preserve whatever brain function was left. He could not speak; Jessica could not visit.

This is yet another blow provided by COVID-19: to contain the spread of the virus, visitors are not allowed in the hospital for almost any reason – even if their loved one does not have COVID. At my hospital, the only way a family member can see their loved one in person is if the patient is actively dying, or if they request the medical team to withdraw life-sustaining care and the doctors are in the process of doing so. This means that not only are people in distress alone, but because family cannot see their loved ones in person, it’s so much more difficult for them to understand what is happening medically. What does it mean to be on a ventilator? To do everything that modern medicine can provide? Until I reached my third year of medical school and saw it for myself, I certainly had no clue.

In a pre-COVID-19 world, families would see their loved ones on the verge of death. While it was incredibly painful, being bedside allowed them to understand when their loved ones would not meaningfully improve or if they would never be able to be themselves again. Now, families must make the decision to stop “doing everything” in the abstract, armed only with video chats of their loved one, brief phone calls with the doctor, and information from Google.

As I tried to answer Jessica’s questions that day, I realized just how unprepared we are as a society for this wave of patients who are at the end of life in the COVID-19 era.

Because of its nuanced social, ethical, and medical nature, there are no strict criteria on when to withhold or withdraw life-sustaining care. I have had patients, for example, that wanted us to do everything we could as long as they had a beating heart. Other patients have felt that if they could not visit family in Italy, play with their grandkids, or ever eat food through their mouth, then they would not want to proceed with medical interventions. Ideally, these discussions happen before a patient gets critically ill, and are documented into something called an advance directive. Unfortunately, two-thirds of Americans do not complete advance directives for end of life care, leaving those of us caring for them without any guidance on how to handle these hard decisions. Now, with over 2.5 million Americans infected with COVID-19 and 125,000 dead so far, what previously seemed so far away could be just around the corner for any of us. If we do not have these discussions now, while we are still able, I fear that in the coming months, thousands of people will be unable to spend their last moments in the way they would have wanted to.

As I answered Jessica’s questions over the course of the next 36 hours, however, I realized that advance directives are only half the story.

“Do you think there is a chance my fiancé will make it?” I remember her asking.”

It had taken 30 minutes of CPR in the emergency department to get John’s heart beating again, all of his organs were failing, and preliminary CT scans of his brain had not looked promising. There was a very good chance he was not going to “make it” – and he was even more unlikely to be the person that she had known and loved. Yet, 10.4% of patients with an out-of-hospital cardiac arrest survive to discharge, and doctors typically wait at least 72 hours after cardiac arrest to make an official prognosis. When patients like him are cooled to 89.6-93.2°F, we typically wait until the cooling protocol is complete, as there is some evidence that early prediction of poor prognosis can lead to the inappropriate withdrawal of care for some patients.

I will never forget what she said next. “If there is any hope that he will make it, I want you to do everything,” she told me. “But if you don’t think he will, then I want to withdraw today; I don’t want to prolong this anymore for me or for him. I can’t eat, I can’t sleep, I can’t wait, I just want to hold him, doctor.”

I couldn’t help but wonder what kind of incentive system our visitation restriction policy had inadvertently set up. Was she rushed into making the decision to withdraw care, because that was the only opportunity she had to be at his bedside? How can our hospitals adapt so that we can better help the families of patients who are dying make informed decisions?

Ultimately, Jessica ended up coming into the hospital later that evening, remaining bedside as we turned off the ventilator and gave John medications to keep him comfortable. He died moments later, at peace and without pain. I’m grateful that we were able to reunite Jessica with her fiancé, but I will never be able to get her story out of my mind. If she had been able to be present bedside, would she have waited until the cooling protocol had finished? What else could we have done to support her? And, most importantly, is this what the end of life will inevitably look like for the foreseeable future, as long as COVID-19 remains a threat? I understand that these constraints exist for everyone’s safety, and even allowing family to be present at death is a privilege that many dying of COVID-19 are not afforded. But we must come up with a better solution.

Lochan Shah is an internal medicine resident.

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