“Can you look at this for me?” Feng, my grandparents’ neighbor, handed me a doctor’s report written in Chinese along with a box of his mother’s new chemotherapy drug.
Everyone in my grandparents’ little town in China knew me as the hotshot granddaughter getting her Ph.D. in the U.S., but I had to confess that my medical knowledge was limited to English, and I wasn’t a professional. I handed the report to my father.
“Don’t tell your mother that her cancer might recur,” he advised. “She needs to have hope that she’ll get better.” While he isn’t a medical professional either, my father had supported my mother through most of her four-year battle with lung cancer and was familiar with much of the jargon.
Reading over my father’s shoulder, I understood enough to grasp that Feng’s mother was gravely ill. I promised Feng I would look up the drug for him and saw him out.
Outside my grandparents’ door, I touched his arm and said quietly, “My father’s wrong. You need to have hope, but don’t lie to her. When my mother died, none of us were prepared because we kept pretending, and that was cruel to all of us.”
I had watched my mother die in pain in a hospital because my father didn’t allow us to discuss the possibility of death, and she never filled out an advance directive. I tried to refuse further medical intervention, and my father told me I was killing her. I didn’t want Feng’s family to go through that.
My mother, like Feng’s, had lung cancer. She was diagnosed when I was 16 and starting college. Over the next three years, I watched her shrivel, so slowly I didn’t notice at first. When I went home freshman year, Mama’s hair was shorter, but she was otherwise the same. Then her voice grew thinner, she started feeling short of breath, she could no longer keep up with me on walks, she became confused and agitated. But we never acknowledged that she was getting worse.
My senior year, two days before flying out for a grad school interview, my father called. Mama was in the hospital with pneumonia.
After my interview, I went straight from the airport to the hospital. In the car, my father said we mustn’t let on that anything was wrong. When we arrived, he patted her hand and said we’d finally go to Paris when she got better, like she’d always wanted.
The next two weeks, I lived in the hospital, sleeping little and eating less. Soon after I arrived, Mama could no longer speak and had to write notes in barely legible Chinese. Then she couldn’t write at all. Not once did we acknowledge the possibility of death.
My father kept saying she was going to have a few more months, and I wanted to believe him. I kept asking the doctors and nurses about her prognosis, if they thought she had any shot at all. She didn’t, but no one could or would give me a straight answer.
A social worker repeatedly asked us to consider a hospice so my mother could pass in peace. I thought it was a good idea, but my father refused, appalled by my callousness. “You think you know everything, but you don’t know what she wants. She wants to live, and you—you’re just trying to give up.” For her part, Mama refused to eat anymore.
A few days before the end, a nurse asked if she had an advance directive. She didn’t. “Sweetie, you’ll have to fill out these forms.” I hesitated but eventually checked No for all medical intervention—no blood draws, no life support, no resuscitation.
My father laughed harshly when he saw the forms and said, “This—you’re just going to let her die. She wants to live, and you won’t let her.” I had to change the feeding tube selection to Yes to get him to sign the forms.
Those last days, Mama seemed so miserable, frowning up at the ceiling, mouth ajar as if to cry out.
I wanted the nurses to tell me what to do. I pleaded, “Is she in pain? More morphine? She can’t possibly make it, right?”
There was no right answer. In the end, I asked them to increase the morphine until she was comfortable and fell asleep holding her hand. It was cold when I awoke.
I no longer hold myself responsible for my mother’s death, but I will always regret how she suffered unnecessarily at the end of her life. I wish we had talked about it, and I wish her doctors had nudged us to discuss her end-of-life options and explained her chances of survival more clearly
But ultimately, doctors can’t force their patients to fill out an advance directive or refuse painful procedures. Patients and their families are responsible for the discussion that follows. We need to be honest with our loved ones about dying, even if it feels terrifying and cruel. We need to have frank discussions about what to do at the end of life. My own family avoided this, and we all suffered.
Patients deserve a chance to say goodbye. My mother deserved to die comfortably and at peace, even if it meant not inserting a painful feeding tube to prolong her life for a few mediocre days.
I hope I’m wrong about Feng’s mother. I hope this chemotherapy drug turns out to be a miracle for her, and she lives to a ripe old 90. But if not, I hope he can be honest with her and with himself, and she is able to die painlessly in the comfort of her home surrounded by the people she loves. I hope they get a chance to say good-bye.