An act of love

My mother had just one special request. When my dad was admitted to the hospital for the final time, she implored his doctors not to remove his nasogastric tube. The tube in question, a thin, yellow, silicon catheter delicately taped to his nose, snaked inconspicuously from his left nostril to drape behind his shoulder. Its purpose was to provide nutrition for him, like other patients who cannot easily swallow solid food.

But I knew, as a neurosurgery resident physician, that the tube’s innocuous appearance is deceptive. During its insertion, patients gulp as someone pushes the unnatural-tasting catheter through the nose and nasopharynx and down the throat for over 20 centimeters until the end reaches the stomach. It’s not necessarily painful to have a nasogastric tube, but it is an uncomfortable experience. 

His oncologist gently asked my mom, “Why do you want Mr. Wu to have this? He doesn’t need the tube any longer.”

“Please, let him keep it,” she pleaded. “If you’re telling us that he has no treatments left for his cancer, he needs the tube.” In bed before us, my father slept through all these discussions, his skin ashen and taut around his sunken cheeks. My eyes stung with tears. I contemplated how my dying dad’s fate, along with my heart, was pulled in different directions while my distressed mom struggled to accept his well-meaning doctors’ recommendations.

Then, my mother insisted, “In my belief, he needs food for a full stomach to pass peacefully into the next life.” She simply did not want to see my dad suffer in this life … or the afterlife.

For 17 years Dad lived with a malignant brain tumor, diagnosed when I was in seventh grade. He held the record at his hospital for the most brain surgeries to remove his recurrent meningioma but had always recovered quickly from his procedures, returning to work and his daily walks.

Sometimes, when I went home for vacations during college and medical school, I joined his evening strolls around our neighborhood, when the hot and dry Southern California air turned into a pleasant, balmy breeze. He liked to ask me about school and whether I had tried any new recipes. With chagrin, I rambled about a beef (cooked to a chewy char) and broccoli (boiled in a pot I then repurposed as a sauté pan) stir-fry dish I cobbled together with knockoff oyster sauce from Safeway.

While he was a pharmacist by trade, my father’s first job after he immigrated to the United States from Taiwan was as a fry cook, presiding over vats of oil into which he dipped dough sticks to make delicious, golden, fried Chinese crullers. Even after he opened his own pharmacy, leaving his restaurant life behind, Dad always kept several thick cookbooks on his bedside table. They were all written in Chinese, so I couldn’t understand the recipes. But every page was splashed with high-definition color photographs of the most delectable foods — red braised pork belly, egg drop soup, crispy roast duck. On Sunday mornings, he whipped up these gourmet dishes and any of my favorite traditional Taiwanese cuisine, made to order.

 My dad was not the only chef in our household. Whenever I caught colds, I remember Mom cooking and brewing broths with specialty Chinese goods and medicinal herbs. Now, she does the same for my daughter. Food was her way of showing love to her family. Love was a bowl of crisp and sweet sliced Asian pear with the peel carefully removed. Love, too, was a feast of a dozen home-cooked dishes when I flew home. Love was my mother always asking me, “Have you eaten?” because, in her mind, providing nourishment was the purest form of caring. Not only to my parents but also to others raised in Chinese and many other cultures, food is a gift and an act of love. 

My father kept his eyes closed when my mother and I entered the hospital room. When he did open them, his eyelids fluttered lightly and erratically as if he were trying to wake from a bad dream. “Dad?” I whispered.

His doctors painted a grim picture. Because a large tumor was now plugging the normal plumbing of my father’s brain, fluid accumulated and caused swelling around his brainstem and throughout his brain. The cancer was growing in a place and at a pace that threatened to compromise his ability to speak, to move his eyes, to swallow and, eventually, even to breathe. The surgeons declined to intervene, saying that any procedure would be too risky. The oncologists had no medications left to offer. The palliative care physicians tried to explain hospice to my mom.

Of course, we couldn’t subject my dad, mute and unconscious toward the end of his life, to unnecessary treatments and devices. The doctors pulled his nasogastric tube after several more conversations with my mother. Finally, she had understood Dad was suffering even though he could not say so. In grief, Mom rinsed my dad’s mouth every day with foam swabs soaked in fragrant ginseng tea to give him comfort and to restore his “chi” — energy — for three weeks until he died. In her own way, she chose how to provide my dad sustenance, propriety and love in accordance with her own Buddhist and Chinese beliefs.

My mother’s fixation on the nasogastric tube and feeding my father was just one example of her cultural and religious values impacting her experiences with American medical care. While other Chinese families may react to American health care differently than my mom did, I can see her actions broadly reflected in common cultural conflicts. The Chinese characters in the film The Farewell grappled with disclosing a terminal cancer diagnosis to the family matriarch, fearing that the knowledge would irrevocably devastate her and hasten death. For years, my mom refused to acknowledge that the medications my dad took were chemotherapy because she didn’t want to think of his brain tumor as malignant, fearing that naming it as such would transform it into cancer. Before every surgery, my mom prayed at the local temple, lighting incense sticks both to protect my dad and to guide his surgeons’ hands. She would pull doctors out of his room whenever they discussed disappointing imaging results and the gravity of his terminal condition, lest my dad hear his prognosis and despair. 

As a Chinese-American doctor and a daughter with immigrant parents, I understood firsthand how much culture matters in health care. Culture pervades not only customs surrounding death, as I’ve seen with my dad’s last month in the hospital, but also health care delivery, access and communication.

The patients and families I encounter at Stanford Hospital arrive with rich and deep experiences and values that could be understood only through patience, empathy and listening. My friend and colleague told me about her interaction with one Chinese family. They couldn’t agree on a time to discuss goals of care for their loved one until the conversation was moved to a conference room other than Room 444, for the number 4, in Chinese, sounds like and represents “death.” How could we have known that was the problem, unless we thought to ask what the family needed? 

Indeed, in the end, it wasn’t about my dad’s nasogastric tube. It was just a symbol my mom clung to while she faced the devastation of the inevitable. A conduit for his peaceful passing as she struggled to let my father go. 

My father had a lovely funeral on a warm, sunny day. My mom chose his final resting place; the gravesite had an impressive vista, overlooking several gently sloping hills with the Los Angeles skyline in the distance.

As Buddhist nuns chanted blessings, we prayed for him before a table laden with flowers and dozens of food platters — rice cakes, chow mein, lotus buns and more. One by one, we ceremoniously raised each dish in the direction of his casket. They were offerings so that his soul would be nourished in heaven. I peeked at Mom, and she had a peaceful expression on her face, the first one I’d seen in months.

Eat well, Dad. We love you.

Adela Wu, MD, is a neurosurgery resident at Stanford Medicine. Contact her at adelawu@stanford.edu.