"You might need to make a hard decision, but making peace with yourself following that decision is the true burden."
Part of my father fits in the palm of my hand. After he was cremated, and before most of him went into an urn and then into the earth, my sister and I each took a scoop of his ashes.
For the past year, he’s traveled around with me. I’ve got a bit of him in my car and a bit in an empty pill bottle that stays in my sundries bag, next to the toothpaste and floss, ready to accompany me wherever I go.
My brother shakes his head and tells me I’m nuts, but I know the truth: My father gave his sanction, and his blessing, for these traveling ashes. I know because I have a folder 3 inches thick, with notes taken over the course of 20 years, outlining all of Dad’s end-of-life wishes.
Everyone should have a folder of wishes.
It took me by surprise when Dad asked me to serve as his medical power of attorney. He and Mom were happily married, so it could have been her. My brother Steven is the oldest, so it could have been him. But I also knew what everyone knew: My father and I operated on the same wavelength. We could finish each other’s sentences. A glance and a smirk were usually enough to understand one another. In asking me to make any future medical decisions, Dad knew I would know, should the time ever come, exactly what he wanted.
What I wanted was never to experience a situation requiring me to make those kind of decisions.
“You need to die in your sleep,” I said. “A long, long, long time in the future. Or never — I’d be OK with never.”
Dad’s hazel eyes, the same color as mine, looked straight at me from across the kitchen table, and we did what we always did: We communicated without speaking. I understood my father had no intention of dying, then or ever. As a pragmatist, however, he needed the document signed.
“If I sign,” I told him, “then we’re not done here. I’m going to need to talk to you about all of this.” My mind worked the way my father’s did. In uncomfortable situations, we went analytical. If I signed his medical power of attorney, then I wanted as much data as I could mine to anticipate every scenario. How long was he willing to be kept alive in a coma? How many doctors needed to be consulted before decisions were made? How did he feel about life with physical limitations? Was blinking a form of communication he was willing to live with? We discussed awful imaginary futures. I took notes and then kept the notes in a folder, tucked neatly in a drawer where I hoped it would rot.
The folder grew fat. Every year, we sat down to update his wishes. Throughout his 80s, his fear of physical impairment lessened, and the importance of remaining cognizant heightened. How to prolong his life remained the focus.
On Father’s Day 2022, I went to my parents’ house early in the day. “You’re the best dad in the world,” I said, giving my still-healthy 91-year-old father a hug. “Also, I need to know what you want for your funeral.”
“You’re serious, aren’t you?” he asked.
I nodded.
Dad assumed his deep-thinking posture: lower lip jutted out, head canted downward, fingertips pressed together.
“Open casket. A button-down shirt and V-neck sweater. Three days of shiva. Cremation.”
“Can I hold onto some of the ashes?” I asked.
Dad smiled. “I would like that.”
It was the only exchange about his wishes that ever made me cry.
***
On a Thursday morning, Dad’s leg gave out. “Goddamn sciatica,” he said. When the ER doctor admitted him overnight because of a slightly elevated white blood cell count, no one worried.
On Friday morning, my sister, brother and I got to the hospital at 7. We peeked into Dad’s room, saw he was sleeping, and settled into the waiting room with our coffees.
At 8, two nurses approached. “We need whoever has medical power of attorney for your father,” one of them told us.
There were the words I never wanted to hear.
“That’s me,” I replied.
The decisions began. Dad’s oxygen was falling, and he needed to be intubated.
Yes.
Dad needed a procedure to dislodge a blockage in his lung.
Yes.
Dad needed a vasopressor — a drug that stabilizes falling blood pressure. Its purpose is to maintain blood supply to vital organs.
Yes.
Dad needed a second pressor, which decreases blood flow to the extremities. Some people lose fingers or toes, but ...
Yes.
Time passed. Hopes rose.
A doctor approached. We learned fluid was building in Dad’s body. His kidneys had failed and he needed dialysis.
Yes.
Another doctor told us Dad’s liver had failed, which meant his blood wouldn’t coagulate — one nick from dialysis, and he would bleed out.
Not yes. Not no. I needed a few minutes.
Three generations of family crowded into the tiny waiting room. We understood Dad’s organs were failing, one by one, like dominoes. It had been 12 hours since the first medical decision.
My brother went into business mode. “Let’s go around the room and hear what everyone thinks,” he said, “youngest to oldest.”
A nephew began: “Grandpa would want us to do everything.” Eight cousins agreed. My sister agreed.
“I don’t think Dad would agree,” I said, touching the folder in my lap. “He wanted to live forever, but he never wanted to linger.” My next words surprised me. “Dad would hate it if we prolonged his death.”
My brother agreed. Mom agreed. One by one, everyone agreed. Still, I was the one to tell the doctor to cancel the dialysis — to give permission to extubate my father.
I was the one to pull the plug.
***
I don’t remember leaving the family conference and giving the doctors permission to stop treatment. What I remember is returning to the little room and curling up on the floor, facing the wall, and crying. I remember thinking about all those conversations with my father and the comfort I’d felt, discussing the mythic future while still secure in a robust present. It’s easy to talk about comas with a person who’s not in one. Rocking on the floor, I realized those conversations with my father had fostered an impossible belief: that we’d have control.
In real time, because of those conversations, every member of my family supported the decision I made. Their unified support mattered as the medical staff extubated my father, but it has mattered even more since then. For months following his death, I would wake up at 3 a.m., haunted with guilt. Twenty years of imagined scenarios: How many years in a wheelchair? How many months in a coma? How many professional assessments should be sought? Dad and I never imagined a 12-hour life-to-death scenario. What kind of daughter pulls the plug that fast? That is the imaginary dagger that pulled me from sleep.
As I read, and reread, the scribbled notes I took over the years, a few things become clear. The first makes me laugh because it’s so evident and still I missed it: My father never wanted to die. Whatever gruesome tragedy we discussed, all of his wishes amounted to a desire for immortality. Ostensibly he and I were discussing life and death options, but he only ever outlined life and more life.
What he meant was life on his terms, and for him, those terms were non-negotiable. He wanted full cognition. He wanted independent agency. He wanted to be relevant. Continuing to breathe without hope of regaining his full faculties did not fall under his definition of life. Ending his medical treatment didn’t just put an end to his suffering — it put an end to what he would have deemed the indignity of prolonging his dying.
The last thing I realized is the folder itself doesn’t matter as much as the time my dad and I set aside, year after year, to talk about what no one wants to talk about. At my father’s shiva, when I shared the experience of being Dad’s medical power of attorney and the history of our conversations, there was a moment of mutual shock. Friends couldn’t believe I had a folder, and I couldn’t believe they didn’t. “Everyone dies,” I’d say. “How can you not talk about it?”
When I told my sister I’m haunted by my decision, she doesn’t flinch. “It was the right thing,” she said. My mother, my brother, my children and nieces and nephews all told me the same. They keep saying it, and I need to hear it, even though I know it.
I do know it — down to my marrow.
What I didn’t know was when you sign on to be someone’s medical power of attorney, it should come with a note of warning: Yes, you might need to make a hard decision, but making peace with yourself following that decision is the true burden.
My husband is an ER doctor. He tells me how often he’s seen families fracture when faced with similar decisions. Spouses are frequently too grief stricken to think clearly, siblings don’t agree with one another, and in the throes of panic, DNR orders are reversed regularly. He has seen how chaos and heartbreak make terrible partners. Nothing can ward off heartbreak, but what the folder represented kept us from chaos.
***
Being able to hold onto some of my father’s ashes — to travel with them — gives me solace.
I’m 61, which means it’s probably time to start meeting with my own daughter. I want my folder of wishes to grow fat over the decades. I want to sit across the table and talk about imaginary scenarios over the safety of tea and toast. I want to make sure my daughter understands death is beyond our control, but should the time ever come, I know she will make the right decision, and live at peace with herself for having made it.