I have known my mother’s end-of-life wishes since I was 14 years old. Over dinner one night in the early 1990s, a time when Dr. Jack Kevorkian and debates about euthanasia were broadcast on the nightly news, my mom—a devout Catholic—told me and my siblings, “If something happens to me, no heroic measures. You let me die.” It is a moment I will never forget. There were teenage protestations, cries of “Ewww, gross!” and “Mo-om!,” but we knew she was serious. My mother was a hospice nurse. She lived in daily contact with death, which meant our family did too.
As a child, I peeked into her work bag, fascinated by its contents: sterile syringes, blue bed pads, silver medical scissors, a blood pressure cuff. I knew she spent most of her 12-to-14-hour work days traveling to terminal patients’ homes, nursing them through the final stages of life, sitting with their relatives, giving comfort and counsel. Through her care and actions, she showed families how to listen to a dying person, to not be afraid of their appearance, their smell, their questions and pain. She showed spouses and children that terminal patients remained the people they knew and loved. She still receives cards and letters from families she served during her 30-year career. I know that one of her proudest moments was when the daughter of a patient told her, “Because of you, I no longer fear death.”
There was no reprieve from death as conversation fodder in our house.
My father was a pathologist, diagnosing disease by looking at slides under a microscope. In elementary school, I sometimes accompanied him to work when he was called in to do frozen sections: the rapid evaluation of surgically removed tissue, with diagnoses made while patients were still on an operating table. He also performed autopsies. When his beeper went off during bedtime, I knew it was beckoning him back to the hospital to cut a body open and determine the cause of death.
One morning our dog Fluffy, a floppy-eared mutt we think was a shepherd-spaniel mix, came back from the woods behind our house with an offering of two dead baby rabbits. I felt sad about it, until my dad returned from work that evening with the rabbits in a canning jar filled with formaldehyde, taken from the lab at work. I kept the jar in my room for weeks, studying the rabbits’ still-closed eyes, the perfect puncture wounds of my dog’s teeth, the short gray fur slicked down and shiny as seal skin. They looked so peaceful and perfect; death simply came sooner than expected.
My parents’ work demystified and democratized bodies for us, their children. No bodies, no matter what they looked like, no matter how much money they had, could ever escape illness and death. To be a human being was to exist in a state of needfulness. My parents made death just another part of life, one that deserves care and consideration. Unlike their own families in the Philippines, who go to great lengths to avoid death and any discussion of it, my parents welcomed those conversations.
I came of age with the belief that hospice work is holy work. That honoring an individual’s wishes for their body is a sacred act. To let go of someone at the time that they choose, to not stand in the way of their choice, no matter how sad or painful or wrong it may feel. That it is the highest service to give people: the dignity to make their own decisions about their body in their most vulnerable hours.
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My mom believes she owes it to me, to her children, to not be a burden at the end of her life. “As a human being, you should let people know what you want,” she says. “If you want full life support, that’s OK! Just say something! Your family needs to know what you want.”
It was not this way in her own family. I remember my maternal grandmother, Lola Lily, as someone who pursued reasonable amounts of pleasure and vanity in old age. She loved to get her hair done and put on lipstick, owned several ball gowns and tiaras, and loved to go ballroom dancing and on breakfast dates to McDonald’s with her “companion” Archie. She hoped to live to be 100. At 97 (and a half, she would want you to know), when she was hospitalized for kidney failure due to complications from diabetes, Lola chose to have daily dialysis to prolong her life.
The dialysis was grueling, and Lola would shiver and cry about being cold. She showed signs of paranoia but never wavered in her treatment. I can picture her in her hospital bed, small and disoriented, her hair finally gray after decades of dying it black. My mother told her it was OK if she wanted to stop, or to consider less frequent dialysis, but Lola Lily insisted on continuing despite the hardship.
“I gave up,” my mother tells me. “Even as a hospice nurse, I knew it was time for me to let go and just be her daughter. To give her dignity until the end. Let Mama be the main player.”
In the Catholic culture of the Philippines, choosing to stop treatment, even for a terminal illness, is seen as giving up. To some, it is the equivalent of killing the person. Many families choose to exhaust all options without regard to the dying person’s quality of life. My mother prefers the options in the United States, and the ability to talk openly about what to do, and she believes that the choice ultimately rests with the person whose body is suffering.
As I grew up, I applied the lessons my parents taught me to things beyond end-of-life care. In 2009, I had an abortion. The pregnancy was happening in my body; it was clear to me that it should be only my choice. But when I finally told my parents, seven years later, after I was married and had a child of my own, they were horrified.
Retroactive arguments began immediately. My mom told me I should have had “the baby,” that she would have taken care of it, that “we” could have given “the baby” to my cousin in the Philippines who is unable to have children. My baby. I realized there was nowhere for the conversation to go. The life she was concerned about was that of an embryo. I was thinking of my own.
“Well, it was your decision,” my mother ultimately conceded. “But you have to know this goes against everything your father and I fundamentally believe in our hearts.” Another statement I will never forget. Did she really believe, as the Catholic Church taught her, that this embryo—a potential person—mattered more than me? Yes, it was my decision, I thought. And couldn’t she see that I was exercising the freedom I learned as her daughter?
In-clinic abortion requires trust, placing yourself—fragile—in someone else’s care. As I get older, I see my abortion as a lesson in the surrender that underlies my most meaningful relationships. There’s another word for this submission: love.
I care in multiple directions these days. I parent my daughters, 8 and 5, who are not too young to understand that their bodies belong to them and that they get to decide if and when they want to be touched, and by whom. Eventually we’ll talk about “consent” rather than “body boundaries,” but I’m not in a rush. I also care for my parents, who live 20 minutes away and are nearing their 80s.
My dad no longer drives at night. I don’t ask if I can carry their Costco spoils into the house for them; I just do it. They are retired and travel back to the Philippines frequently; I like to drive them to and from the airport, to load and unload their suitcases at the airport curb. I ask, possibly to their annoyance, that they text me when they get home from evening outings. I remind them to use the bathroom before they leave my house, just as I remind my daughters.
As the youngest of three and the only daughter of Filipino immigrants, I was told that I’d be responsible for caring for my parents as they aged. My older brothers will contribute financially and physically as they are able, but the expectation of care falls on me, the female child.
While I’ve bristled at the gendered aspect of this expectation because I know it’s not entirely fair, I also know there’s no way I wouldn’t do it. It is the least I can do for the people who gave me everything. My husband and I talk about this responsibility when we consider long-term decisions for our family of four. Should we plan to insulate and remodel our garage into a first-floor living space that both, or just one of them, could live in if they needed to move in with us?
My oldest brother has medical power of attorney, and I believe he will do what my parents want at the end of their lives, but I also know I would fight him if it came to it. I hear my mother’s voice in my head: “If it’s just to prolong life, then no.” I have never been uncertain what my parents want for their bodies; I am grateful for that. I wish my parents felt the same appreciation for the clarity I have regarding my body.
Yet somehow, just typing that seems unfair or inaccurate. My parents don’t see reproductive justice and advance directives on the same spectrum. But I do. To me, bodily autonomy is freedom. It is not a right to be granted or taken away; freedom is intrinsic to being a person. But I no longer hope to convince my parents of this as I did when I was younger. I’m not sure how many years we have left together; I want to spend those years loving and accepting them. My urgency toward changing their minds is now focused on ensuring bodily autonomy for my children.
The complete right to your body is a lesson I am teaching my daughters each day, modeling it through my work and actions. It is the same lesson my mother and father taught me, in their own ways. Every day I am a mother makes me even more of a daughter, perhaps a better one.
