Mothers’ Day is coming up. Every year, I feel grateful that I get to make not one but two calls. Big E, my belated father’s only sibling and that “cool, badass aunt,” has always been like a second mother to me and countless other young people she has encountered throughout her life.
I wrote my first column for the New Haven Independent in mid-April about what it is like to be an emergency room doctor during the coronavirus pandemic. Big E was once a newspaper journalist, so I made sure I emailed the article to her.
I am so glad I sent that email. A week later, Big E died from Covid-19.
Her death was not completely unexpected. She was 77 and fighting chronic lung disease and tongue and colon cancer. Though she yearned to return to her townhouse, she was residing in an assisted living facility.
The residents at the facility had been quarantined there for six weeks, unable to leave their rooms. Activities, communal meals and happy hour were all canceled. A free (and curious!) spirit, Big E would occasionally sneak a peek into the hall. Otherwise, she and her co-residents upheld strict Covid precautions.
She, like so many with Covid, was without family but not alone in her final days. Weeks ago, she became frustrated that no doctor would come to her facility, where she was suffering from hugely swollen legs. Always the investigative reporter, she discovered that if she signed up for home hospice, fearless angels in the form of hospice nurses would start weekly in-person visits.
She was eligible for hospice, as there was never a shortage of doctors who thought she had fewer than six months left to live (some of those doctors died years ago!). She was then satisfied that a medical provider bore witness to her pitting, weeping legs. She got a fever, weeks into “this nonsense,” as she called it. She said, “It’s curtains for me,” even before her test came back positive.
A few days later, while speaking to her on the phone, I noted she was having trouble breathing. I asked her if she wanted to go to the hospital. It was hard for her to speak, but I knew if she wanted to go, she would let me know. Big E earned her moniker through her outspoken personality, not her 100-pound physique.
After conferring with her two children, we made the call to send the hospice nurses to Big E’s side to manage her breathing symptoms. Fortunately, a day later, the hospice program arranged for her two children to make a final visit in her facility. Her two children donned personal protective equipment (PPE) and made sure she knew how much they loved her.
In the best case scenario, conversations about end of life wishes occur when there is the luxury of time. However, even with all the time in the world, these conversations can be messy, contradictory and complicated. On multiple occasions over the years, Big E told me that she wanted “to live as long as possible.” But by choice, she had no medical care until age 70.
When she was in the hospital, Big E would often fight with her providers about a blood draw, an X-ray, or a CT scan. She skipped many outpatient follow-up appointments. Her OB-GYN office is still waiting—50 years later—for her to return for her postpartum checkup. When admitted to the hospital for pneumonia this winter, she refused a ventilator even when ICU doctors told her that she might die without it. (That time, she proved them wrong.) She said she wanted to live as long as possible, yet she actively avoided or declined much of the care available to her over many decades.
In her final days, we decided to honor her wishes as expressed by her actions. We debated whether we were honoring her words. After her death, we realized that we also honored her wish to allow her to live “as long as possible.” As a journalist who was always precise with her words, she made sure the words we needed were there all along.
I recommend that everyone start the process of having these difficult conversations with their family members about their wishes. At the very least, everyone should name someone they trust to make decisions for them if they are unable to speak for themselves. Books such as How We Die by former Yale physician Sherwin Nuland and Being Mortal by Atul Gawande are good starting points for us all to get more comfortable talking about death. Covid is making it necessary.
Karen Jubanyik (pictured) is an emergency medicine physician at Yale New Haven Hospital and a faculty member at the Yale School of Medicine. This article originally appeared in the New Haven Independent.