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“I’m so grateful for the work I’d done to come to terms with death and dying.”

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By Tarlise Townsend

New York, NY
United States

It was the evening of day two of my recent hospital stay. I had tried sitting on the edge of the bed and immediately “desaturated” to 75%—i.e., the amount of oxygen in my blood plummeted, and I fell right back into bed.

“Kathleen!”

My RN called the NP into the room to watch as I struggled to recover. She wanted Kathleen to see the state I was in.

An hour or so later, an ICU nurse was in my room. He explained that, while I had tested negative for COVID-19 once, my respiratory symptoms still resembled that disease. And, since I didn’t seem to have improved over the last two days on antibiotics, a bacterial pneumonia was seeming less likely to be the cause. The problem with COVID-19, the nurse explained, is that patients with severe respiratory symptoms will be doing okay and then suddenly deteriorate, necessitating intubation and potentially ventilation. Based on what they had witnessed earlier, they thought I might be approaching that threshold.

“I wanted to stop by and talk to you while you’re still lucid,” the critical care nurse said. “In case things take a turn for the worse overnight.”

He was somber and matter-of-fact. He told me how they wake ventilated patients periodically to see if they can contribute to breathing or if the ventilator is doing all the work. He said that if, after a certain period of time, patients still aren’t able to contribute, they’ll be removed from the machine. He asked if I had established any health care proxies and told me to bring them into the loop.

That conversation represented the first time I’d been told I might die soon, that I might be in my last hours of lucidity. Because of the COVID-19-era “no visitors” policy, I took this information in alone. Beyond text messages with loved ones, my RN Angela — a stranger just 12 hours earlier — served as my main source of calm and support.

And yet, somehow, I was calm — or at least much calmer than I would have expected to be. Sure, it might have had something to do with the Ativan that Angela quickly procured after the ICU nurse left. But even during that difficult conversation, I remained surprisingly clear-headed. I told him my health care proxies were established and that their information, along with my advance directives and a personal statement I’d written about my end-of-life wishes, was all in the hospital’s system. I shared with him that, where there’s a tradeoff, I value quality of life over quantity, and that I don’t want to be kept alive via “heroic measures” if it will mean very poor quality of life. I asked him about any treatment they were offering patients (they were trying hydroxychloroquine, he said) and thanked him for taking the time to brief me.

Afterward, I touched base with my friends in medicine, who reassured me that intubated and ventilated patients are well-sedated and comfortable — though this may be changing as drug shortages increasingly threaten providers’ ability to provide first- and second-line options. After joking about it with a friend, I did some mindful breathing, imagining myself smiling at my lungs on the in-breath, showing my appreciation for the work they do for me. I didn’t feel alone.

Eventually, I fell asleep. By the time I woke up, I had made it through the night. I was feeling a little better, and my second COVID-19 test had come back negative. Ending up in the ICU was no longer a major concern. I turned my attention to eating breakfast despite no appetite.

Now, reflecting on the experience, I’m so grateful for the work I’d done to come to terms with death and dying. Just days before realizing something was up with my lungs, I’d finished a beautiful book called Advice for Future Corpses, which speaks in detail about the realities and practicalities of death, incorporating a Zen Buddhist perspective while neither alienating nor sugarcoating. I had done extensive work on fear of death and dying in therapy, knowing that if I could alleviate that fear, I could alleviate a lot of the suffering that cancer imposes. I was even preparing to be trained as a death doula in May, as a way of providing comfort and support to others as their lives come to a close.

A few years ago, I worked with a lawyer to ensure my advance directives and other affairs were in order, and I had confirmed that my doctors were aware of these documents. I had had extensive and repeated conversations with my closest loved ones about my end-of-life wishes, to help ensure that, if the time came for them to influence medical and other decisions, they could do so confidently.

When someone — clinician, friend, stranger — tells me to “just stay positive,” to rid my mind of the possibility of death from cancer one day, my heart hurts. I can’t imagine what my recent hospital stay would have been like if that conversation with the critical care nurse had been my first time seriously considering my own death. I can’t imagine how much panic and isolation I would feel; how difficult it would be to inform and coordinate my health care proxies at such an intensely emotional time; and how scary it would feel if I’d never considered and worked on those bigger questions before: What is my legacy in this life? Who do I want to be, and have I been that person?

Of course, who knows how I’ll react in the future. Despite my severe respiratory state, I had minimal pain or other sources of suffering to complicate matters. I was privileged to be in a well-equipped hospital prior to the flood of COVID-19 patients. And it’s possible that my sense of calm was a mere product of exhaustion from working so hard to breathe. So, it’s unclear how much credit I can take. It’s not as though I’m entirely unafraid of death, or not still hopeful that this cancer will just go away and stay away. But I do know that doing death work has brought me peace of mind I wouldn’t have otherwise, and boy do I wish we did a better job of normalizing that.

For now, as far as I know, I’m nowhere close to death. I’m out of the hospital, my health is good, and I’m set to defend my dissertation in two weeks. I’ll start a postdoc soon and will turn my focus to a long list of research projects and effort to support the COVID-19 response in whatever ways I can.

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