I’m not an expert on death, but a decade ago I held my mother’s hand and watched her die a terrible death. My mother fought a rare degenerative neurological disease for six arduous years. At the end, her mind was strong but her body was failing her in every way.
We’re approaching the 10-year anniversary of her death, and I’m only now able to write about it. I couldn’t talk about what happened that day for a year. So perhaps I shouldn’t have been surprised by the flood of emotions I felt when I read about an elderly Florida woman who shot and killed her terminally ill husband in a hospital room.
My mother had progressive supranuclear palsy, a progressive degenerative disease similar to ALS. PSP patients develop balance issues, vision problems and swallowing difficulty. They have frequent falls, until they need to use a wheelchair, and often choke and develop aspiration pneumonia as the disease progresses. PSP is rare ― my father and I had to explain the disease to numerous doctors and medical staff when my mother’s falls or bouts of pneumonia led to hospital stays.
In the weeks before my mom’s death, we brought up the topic of hospice. She was in near-constant discomfort, if not pain, from arm and hip injuries after falls. She received most of her sustenance through a feeding tube and could just barely sip some wine and eat a bite of chocolate without choking and coughing spasms. She began to have a gray pallor. But she wasn’t ready for hospice yet. She emphatically shook her head “no” when we suggested it was time. We upped her ibuprofen dosage to help with her pain and soldiered on.
The day she died, I was at my 6-year-old’s soccer game and got a call from her nursing assistant saying she was having intense abdominal pain. I spent the day with her, along with my dad who arrived home from a business trip a few hours after I got there. We called her doctor, fetched and administered a prescription to assuage her stomach symptoms — and watched her grimace and shift around in her chair uncomfortably. I asked her tentatively several times that day, as I watched her suffer, if we shouldn’t consider going to a hospital. She vigorously shook her head no. My mom was done with hospitals.
As the day dragged on, something was clearly very wrong. She moaned and sweated and, at times, writhed in pain. I would have given her any drug I could get my hands on. We didn’t have narcotics or medical marijuana. I kept asking if she was OK, if we should go to the hospital, and she kept demurring. I think she knew this was the end — and she powered through it, the way a woman powers through childbirth, to get to the other side.
When she suddenly stiffened and her face turned purple, I grabbed her hand and began to sob. We believe her heart stopped. Her doctor later surmised that she may have developed an ulcer from the ibuprofen and may have been bleeding out internally.
After she died, my father and I stared at each other, tears streaming, wondering what to do. He called a coroner whose information he had saved and who was trained in the careful harvesting of brains for donation to science. Mom had wanted her brain sent to a lab conducting research on PSP. We called our immediate family to deliver the news. And then, on the advice of the coroner, we called the police.
That day was an out-of-body experience, really. The police arrived and began asking an exhaustive list of questions about my mother’s death. What was her diagnosis? What medications did we give her that day? They asked to see the detailed Excel spreadsheet my father maintained listing all her medications — as if they could make sense of it. Could a doctor confirm her condition? Could we get through the after-hours phone labyrinth to reach her doctor, so the officers could confirm her condition?
In that way you fold the innermost part of yourself into a tiny piece in times of trauma, my dad and I numbly answered their questions. My heart began to race, as I realized they were trying to determine if we helped her die. And if we needed to be charged with a crime.
I’ve come to know a bit more about death since my mother’s passing. I’ve come to know that PSP patients with the means to do so find their way to Switzerland or the Netherlands, where euthanasia is legal and can be accomplished in a peaceful, dignified manner, in the company of loved ones.
I’ve come to know that sometimes hospice nurses and other medical staff blur the legal lines at the end of a suffering patient’s life, administering the necessary doses to provide relief from unbearable pain and hasten the end.
Medical ethicists and experts can parse out these issues. But I can’t stop thinking about that elderly couple, faced with a horrific reality, deciding their best recourse was taking a firearm into a hospital room. I can’t stop thinking about that 76-year-old woman desperate to end her partner’s suffering, pulling the trigger and ending his life. And I can’t stop thinking about the law enforcement officers who forced their way into a barricaded room, threw that devastated woman onto the ground, and tossed her into the yawning maw of the criminal justice system.
I don’t have many regrets in life, but I regret the way we managed my mother’s death. It wasn’t peaceful or serene ― it was excruciating and torturous.
We humans spend countless hours talking about and reading about and pondering how to have a good life. Perhaps, in this country, we could dedicate a little more careful contemplation to how to give someone a good death.
Joanna McFarland Owusu is a writer/editor based in Dallas. Joanna was a federal government analyst in a former life, and is a longtime policy stan and news junkie. When she isn’t reading the news or writing, Joanna spends most of her time Uber-momming two teenage sons and an elementary-aged daughter around town.