“It is not for me to judge another man’s life. I must judge, I must choose,
I must spurn, purely for myself. For myself, alone.”
-Hermann Hesse, “Siddhartha”
What does it mean to die with dignity? As a neurosurgeon who faces life and death decisions routinely, I ponder this question often. When a terminally ill person decides to choose death over suffering, we perhaps recognize the ensuing act as a dignified death. But is there any less dignity in living out one’s life destiny to the bitter end, no matter the suffering, using what precious time is left to better the world one leaves behind?
These are always apt questions, but they are particularly timely as we approach the third anniversary of the death of Brittany Maynard of Anaheim, CA.
Let’s look at Brittany’s decision in the face of death and the factors that shaped it, as well as another patient who decided to see his life to the end. Deciding to end one’s own life must be carefully considered — 11 percent of patients who make this choice change their minds.1 Therefore it’s worth pondering these two different, well thought out approaches to the final days.
Brittany suffered from debilitating headaches for months and learned she had brain cancer in 2014. She was 29 years old and had been married for a year.
After two surgeries to halt the growth of the tumor in her brain, her doctors told Brittany it had become more aggressive. The physicians recommended full-brain radiation, which proved unsuccessful.
Brittany then learned she had only six months to live. Her husband and she did extensive research to learn all her options, but they realized there was no treatment that would save her and they believed that available therapies would ruin her quality of life in the time left. It was her conclusion that she would continue to suffer terribly — it was possible that even morphine would not lessen her pain. She didn’t want to endure that, and she didn’t want her family to witness it either.
Brittany considered “death with dignity” — an option for mentally competent, terminally ill patients who have less than six months to live. With that choice, she would get a prescription from a doctor for medication that would end her life if her suffering became unbearable. Brittany decided this was the best option for her and her loved ones.
She and her husband moved to Oregon, at the time one of only five states in the U.S. where death with dignity was within the law. Surrounded by family and friends, Brittany took the medication and passed away on November 1, 2014.
In the days leading up to her death, Brittany said, “Having this choice at the end of my life has become incredibly important. It has given me a sense of peace during a tumultuous time that otherwise would be dominated by fear, uncertainty, and pain.”
As a result of Brittany sharing her story and establishing Brittany’s Fund and the Compassion & Choices Foundation, more than half of the states in the U.S., including my home state of New Jersey and the District of Columbia, introduced aid-in-dying legislation in 2015.
I greatly respect Brittany’s choice. But there is another approach. Paul Kalanthi was a stellar neurosurgical resident at Stanford University, earning the American Association of Neurological Surgeons’ highest award for research. When he entered his sixth and final year of training, he began losing weight rapidly and had severe back pain. After going through a gauntlet of tests and evaluating his own symptoms — he was a doctor, after all — he was diagnosed with terminal stage IV lung cancer.
Paul described his approach to facing suffering and death in When Breath Becomes Air, written as he was dying.
Paul also endured excruciating pain from his disease and treatments. In his book, he writes about facing death: “Time for me is now double-edged: every day brings me further from the low of my last relapse but closer to the next recurrence — and, eventually, death. The most obvious response might be an impulse to frantic activity … Part of the cruelty of cancer, though, is not only that it limits your time; it also limits your energy, vastly reducing the amount you can squeeze into a day.”
Paul concluded that he needed to continue his usual life. He returned to one of his passions, writing, determined to complete his book. He and his wife also had a child during this time.
The epilogue to When Breath Becomes Air is written by Kalanithi’s wife, Lucy. Here is a part of it.
“During the last year of his life, Paul wrote relentlessly, fueled by purpose, motivated by a ticking clock. He started with midnight bursts when he was still a neurosurgery chief resident … later, he spent afternoons in his recliner, drafted paragraphs in his oncologist’s waiting room … When his fingertips developed painful fissures because of his chemotherapy, we found seamless, silver-lined gloves that allowed use of a trackpad and keyboard. He was determined to keep writing.”
He died in March 2015. I greatly respect Paul’s choice as well.
It’s impossible to put yourself in a terminally ill patient’s shoes and truly understand their emotions and physical suffering. Brittany Maynard wanted her family and friends to remember her as she was: a smart, energetic woman who made friends easily and loved life. Her courageous choice to die with dignity turned out to be a spark for important aid-in-dying legislation across the United States.
Neither Brittany nor Paul could control their impending deaths, yet they both controlled the manner of their death. In their respective choices, each found a way to reclaim power over their own lives.
I truly hope, however, that if I find myself in the devastating situation of being diagnosed with a terminal illness, I have the mental, physical and emotional wherewithal to choose the same path as Paul Kalanithi. He accepted the fact that suffering is part of the human condition and believed that although it’s extremely difficult, it’s meaningful and we somehow need to endure it and embrace it.
Brittany and Paul took divergent paths during their final months, yet both left an important legacy. Brittany championed legislation for aid in dying. Paul showed us how dying can be a catalyst for creation, through a child and the written word. Their lives and deaths remind us that the only right answer to the final question is that which comes from within each of us.
Mark McLaughlin is a neurosurgeon.
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