Stephanie passed away this morning.
In an email from her husband, Frank, I learned that I’d lost my dear friend of two decades.
Stephanie was only forty-two. An administrator at a local bank, she was also a devoted wife and the loving mother of three daughters.
Stephanie and Frank met, and married, in the same church where their daughters were later baptized. A devout Christian, she volunteered many hours for the Red Cross and other causes. Her vibrancy, kindness, warmth and generosity made her a beacon within the community.
She lived a beautiful life with her family, captured in the holiday cards she sent me every year. Together, we’d learned to make mooncakes, the Chinese pastry traditionally eaten during the Mid-Autumn Festival; we’d enjoyed family barbecues and shared so many happy times. Her sunny smile, her gentle voice…the memories revolve in my mind.
I’d always thought that if an angel existed on earth, it would be Stephanie. Now she’s gone, and it still seems unreal to me.
Her unexpected loss has left me pondering the profound choice her family faced in deciding whether to remove the feeding tube that was her only life support. Since Stephanie had no living will, they’d had to make that life-or-death decision on her behalf.
“She looked so peaceful at the end,” Stephanie’s mother told me over the phone. Listening, I couldn’t control my tears as I thought of her three beautiful daughters, all very young: What will they do without their mother?
Stephanie’s ordeal began one evening, when she suddenly collapsed to the floor, unconscious. She was rushed to the hospital, then to the operating room after a brain scan revealed an aggressive brain tumor. A large part of the tumor was successfully removed—but Stephanie never regained consciousness.
The doctors were not optimistic about her prognosis.
Over the following weeks, she began to exhibit signs of marginal improvement. We saw her smile and make facial movements—sometimes opening her eyes wide and moving her mouth and jaw. Her mother also observed that Stephanie’s eyes were open for several hours each day.
A neuroradiologist reviewed her brain scans and said that the images showed improvement and that there was no clear cause for her current state. We all felt very hopeful that she would get better, but also uncertain of her chances for a truly meaningful recovery.
Stephanie’s lack of a living will made this uncertainty even more difficult for her family. “What would she want at a time like this?” they asked themselves.
They let their faith in God guide their decisions, praying and waiting for a miracle. Eventually, though, they divided into two camps as they debated her future.
Stephanie’s parents played an active role in caring for her in the ICU. Observing subtle progress, her father believed that she was on the path to recovery and would awaken.
For Stephanie’s husband, her “progress” was an illusion—a reflection of the heartfelt wish that she would regain her previous level of functioning. He recalled prior discussions in which Stephanie had said that she would rather be with God in heaven than endure a poor quality of life.
I shared Stephanie’s father’s sentiments. I too had noticed improvements in her functioning. One day, as I held her hand and smoothed her hair, telling her how much I looked forward to going to church together again, Stephanie blinked her wide-open eyes and smiled. I also thought that her youth gave her a better chance of recovery. Her brain scans showed that she would probably suffer some vision loss, but her other organs seemed to be functioning well. Would she consider this a poor quality of life?
Originally, Stephanie’s family had agreed to give her three months to wake up from her coma. At the two-month mark, though, the choice was made to honor Stephanie’s dignity and humanity by letting her go peacefully.
I felt distressed by the family’s decision—and I had many questions: Why couldn’t they just keep her on the feeding tube longer? We saw signs of “life”; was stopping her nutrition morally right? Was it the same as murder? Stephanie had no living will; how do we know what she would really want?
As a physician myself, I understood the doctors’ carefully informed prognosis. My understanding, however, did not ease the pain of losing my friend.
The weight of determining when to transition to comfort care falls heavily on families like Stephanie’s. The decision is fraught with complexity, as doctors have such difficulty forming a prognosis in these cases. I’ve heard of instances where comatose patients wake up and regain their independence. Stories like these make me wonder how long Stephanie’s family should have waited. Six months? A year?
When a family must balance considerations of youth versus old age, hope versus despair, religion versus science and life versus death, I imagine that it feels impossible to choose the “right” time to let a loved one go. I believe that Stephanie’s family made what they felt was the best decision for her. But I can’t help wondering, Will this lead to regret later? How will they explain Stephanie’s condition and death to her daughters? Her death impacts them most of all, and their world will surely never be the same.
My dear friend’s story has inspired me to complete a living will of my own. I believe that, in the event of serious illness, having this directive could alleviate the stress or guilt my family might suffer in having to make life-or-death decisions—especially when they would already be feeling panicked and burdened by the thought of losing me.
This spring, as colorful flowers bloom across the mountains, I think of Stephanie, who has peacefully passed on. With a heavy heart, I accept that we will never again share the beauty of another spring together.
6 thoughts on “When Is the Right Time?”
While I ache for Stephanie and her family, I do believe that a living will is a must. I also try to avoid “what if” questions; they only bring pain. May Stephanie be at peace, and may you find peace in your memories of her.
A moving essay that provides a sensitive and balanced view of a complex (but, unfortunately, not so uncommon), situation and the associated difficult decision-making relating to it. Would love to see more from this author!
Touching piece about such an important proactive decision. I’m so glad my husband and I included living wills in our legal papers drawn up a few years ago. On another note, where could I purchase Dr. Yang’s book Brain Problems after Chemo?
Such a deeply moving piece about a tremendously difficult situation for all involved. The anguish felt by the author clearly shines through, but despite this, she’s still able to discern the diversity of perspectives during challenging medical decision-making scenarios. While the ending is painful, the author beautifully honors her friend’s memory through bringing this story to light.
Such a poignant story, and a shining example of why everybody needs Advance Directives. Filling out Five Wishes with my mother following her terminal diagnosis was excruciating, but I was able to care for her with no regrets or what ifs.
This really brings home the need for a Living Will. The decision was harder here because she showed signs of awareness and you find yourself asking, COULD she get better. But that better was illusive. The doctors agreed, it seems , she would never have the life she had before. So sad.