On March 5 of this year, I distinctly remember sitting on my friend’s sofa, eating takeout Thai food with her and her fiancé, discussing whether or not she should still consider flying to India for her wedding preparations. I naively expressed hope about my plans for Maui in April and Ireland and Italy in June. COVID-19 had been slowly encroaching on the United States, but it had not yet become a global pandemic.
Shortly after our discussion over Thai food, COVID-19 had exploded, and our travel plans were thrown completely out the window. But unlike most people my age, instead of re-constructing trip itineraries, I was formulating my advance directive. My Google searches consisted of “end-of-life conversation guides,” not “best hiking trails in Maui.” These were not the activities I thought I would be doing at 27. As an ICU nurse, it felt like my life had, in some strange way, come full circle much too early. But as someone who frequently talks to her patients about having honest conversations with their loved ones about their end-of-life preferences, the COVID-19 pandemic was the final push I needed to truly practice what I preach.
But Deborah, you say, you are being so dramatic. Why would I even consider filling out an advance directive or discussing my wishes for end-of-life care at such a young age? Because I have witnessed the ramifications of not having these documents in place, of families saying “no, we never really talked about this with Grandma,” as a frail matriarch languishes on a ventilator for days. Before COVID-19, I had definitely come to terms with my own mortality, but the idea seemed elusive and distant. Sure, I have witnessed a 20-something die from a cocaine overdose and a 30-something taken off life support after suffering a sudden cardiac arrest. But pre-COVID-19, most of the death I was accustomed to involved elderly people with multiple, chronic conditions who had either suffered an acute event or an exacerbation of one of their existing medical problems.
Soon, I was reading article after article about seemingly healthy young adults being hospitalized for COVID-19 symptoms. Some of the most chilling stories were about young ICU nurses. I imagined myself on high flow oxygen—or worse, intubated—barely able to breathe, speak, or hike, lungs ravaged by an insidious virus. The most anxiety-inducing articles were those that included facts about mortality rates. Knowing that my parents fell into one of the higher risk groups, I begged them to stay home. “Please don’t even venture out to the grocery store,” I pleaded. My boyfriend took over grocery shopping for a couple months before my parents insisted they would rather do it themselves. Fortunately, my mom and dad are both relatively healthy for their age. Neither of them has ever been hospitalized, nor have we ever experienced any real health scares. But for the first time in my life, I was legitimately afraid that I could lose one or both of them to COVID-19. The possibility of death for me or my loved ones—once an ambiguous concept—had come to look me right in the eyes. And it was here to stay.
At this point, I knew what I had to do. First, I filled out an advance directive and emailed a copy to my healthcare provider. Then, in late March, I called my mom. “I think we need to talk about what you and Dad would want at the end of your lives, just in case something were to happen,” I said. “You know, with COVID and all.” Though it was a topic I regularly broached with my patients and families, I felt awkward discussing it with my parents. When it is Mom and Dad—not the 92-year-old with aspiration pneumonia and her daughter—the tone changes and the intricacies of a personal relationship come into play.
Cultural norms also threatened to further complicate matters. Both my parents are Chinese. But my mom was born in Oakland, California, while my dad was born in Guangzhou, China. My mom is a former medical social worker who led cancer support groups and knew about POLST forms long before I did. Though he immigrated to the United States at a young age, my dad comes from a more traditional Chinese family, similar to the Wangs in The Farewell. On my dad’s side, hiding a cancer diagnosis from an elderly family member was not uncommon. Even discussing death is taboo, as if uttering the very word would somehow cause it to happen. Just like Billi Wang (Awkwafina), who was caught in between two cultures, my Chinese-American background was playing tug-of-war as I wrestled with the best way to navigate a conversation about death and dying with my Americanized mother and traditional Chinese father.
What I realized is that simply getting over the initial hump of introducing an uncomfortable topic is two-thirds of the battle. Even though these are matters I deal with regularly as an ICU nurse, I actually agonized for days about asking my parents to (virtually) sit down to discuss their end-of-life preferences. After I mustered up enough courage to speak with my mom and schedule a date, having the conversation itself was less daunting than I thought. Using a conversation guide helped to provide the right amount of structure and many helpful prompts, since the average person (myself included) might find bringing up death and dying a bit more difficult than what to eat for dinner or where to go for winter break. The Conversation Project’s website appeared at the top of my Google search for “end-of-life conversation guides.” I emailed a copy of the guide to my parents, and we used it to drive our conversation. I read the discussion prompts, and my parents and I took turns answering while I recorded our preferences in a Google Doc. I was pleasantly surprised that my dad hadn’t expressed any resistance, though I tried to frame the discussion as beneficial instead of bleak. “If we talk about what we want when we’re NOT in a crisis, it’s much easier and a blessing to whoever is going to be speaking and making decisions for you,” I emphasized. My parents understood. And circling back to these topics in the future seems a lot less intimidating, now that the door has already been unlocked.
As a young ICU nurse, I deal with life and death situations regularly. I am often asked if I have become desensitized to death. To this, I answer yes and no. Yes—the dying process becomes normalized. I have watched countless patients take their last breath, some precipitated by trauma and others peaceful. I have turned a bed toward Mecca, and I have called priests for last rites. Cleaning and bagging the bodies of deceased patients is as ordinary as starting an IV or titrating a medication. But by the same token, I have been blessed with a greater appreciation for life because I am constantly bearing witness to its fragility, something this pandemic has further illuminated. My unique perspective on mortality has taught me to be prepared, to cherish the small things, to air hug my loved ones a little tighter, and to be grateful for each new day.
Thank you for sharing Deborah! Well written. Essential topic for all of us.
What a beautiful perspective of a Millennial on this end-of-life process. Thank you for sharing your story, Deborah!
This is a ‘must have’ conversation both for the children and the aging adults in a family. As an Asian it is a little more difficult as the topic seems to be taboo.
So glad you have brought it out in the fore front for the younger generation.
Enjoyed your blog and hope to read more.
You are awesome Deborah.