Written for Mark McLaughlin, MD

Making the Choice to Live or Die

By Mark R. McLaughlin, MD, FACS, FAANS

Recently, my colleague Dr. Matthew Tormenti started a conversation about a topic that sparks strong opinions and emotions—a person with a terminal illness who decides to end their own life.

 

After discussing the varied points of view on this issue, Matt and I conceded there are no right or wrong decisions, only those that are best for the patient and their family. A person’s decision to end their own life must be carefully considered and absolutely certain—11 percent of patients who make this choice end up changing their mind.

 

When a patient chooses to “die with dignity,” it affects their physician as well as their family. According to The Primary Care Companion to the Journal of Clinical Psychiatry, “Caring for the dying patient is among the most challenging clinical tasks a physician faces. Physicians take great pains to alleviate suffering and are trained to prolong life. Therefore, when a patient with a terminal illness asks to hasten his or her own death, conflict often arises. To a physician, this request can be confusing, anxiety provoking, and infuriating.”

 

Consider the cases of two bright, caring people and how their decisions affected their lives and the lives of those around them. Brittany Maynard of Anaheim, CA 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—she and her husband were trying to start a family. 

 

After two surgeries to halt the growth of the tumor in her brain, her doctors told Brittany it had become more aggressive and continued to grow. The physicians recommended full-brain radiation, which meant she would lose the hair on her head and her scalp would incur first-degree burns.

 

The radiation proved unsuccessful and the doctors gave Brittany terrible news—she had only six months to live.

 

Brittany and her husband did extensive research to learn all her options, but they realized there was no treatment that would save her life and available therapies would ruin her quality of life in the time she had left. 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 death with dignity was the best option for her and her loved ones.

 

She and her husband moved to Oregon, which was one of only five states in the U.S. where death with dignity is 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. and the District of Columbia introduced aid-in-dying legislation in 2015.

 

I greatly respect Brittany’s choice—she faced a long period of terrible suffering and she made her family and friends a main factor in her decision—but when possible, there is another path to choose.

 

Paul Kalanithi, author of the terrific book When Breath Becomes Air, was a stellar neurosurgical resident at Stanford University—he earned the American Academy of Neurological Surgery’s 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 stage IV lung cancer.

 

Paul suffered terribly from the disease and radiation treatments, which sapped his energy and robbed him of his sense of taste. He endured excruciating pain. 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: to ‘live life to its fullest,’ to travel, to dine, to achieve a host of neglected ambitions. 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, even though it included severe daily physical and emotional struggles. He returned to one of his passions, writing, determined to do it as long as he could and to complete his book. In addition, he and his wife decided to have a child. As his health declined, his wife gave birth to their daughter, Cady.   

In the epilogue to When Breath Becomes Air written by Kalanithi’s wife Lucy, she documents his relentless efforts in the days leading to his death in March 2015: “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, softly tapping away on his laptop as he lay next to me in bed; later he spent afternoons in his recliner, drafted paragraphs in his oncologist’s waiting room. He took phone calls from his editor while chemotherapy dripped into his veins and carried his silver laptop everywhere he went. 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.” 

 

Kalanithi’s choice to forge ahead while enduring adversity coincides with a main theme of Austrian neurologist and psychiatrist Viktor Frankl in his book Man’s Search for Meaning. Frankl, who suffered brutal treatment at the hands of his captors during the Holocaust, claims that the ability to make choices is an indispensable ally in dire circumstances:

 

“When we are no longer able to change a situation, we are challenged to change ourselves.”

 

“Everything can be taken from a man but one thing: the last of the human freedoms—to choose one’s attitude in any given set of circumstances, to choose one’s own way.”

 

“The one thing you can’t take away from me is the way I choose to respond to what you do to me. The last of one’s freedoms is to choose one’s attitude in any given circumstance.”

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 catalyst for important aid-in-dying legislation across the United States.

 

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 although it’s extremely difficult, it’s meaningful and we need to somehow endure it and embrace it. 

 

As Dr. Tormenti and I ended our discussion by concluding that we can never really know how we would respond to a diagnosis of a terminal illness, I maintained the hope that I would forge ahead with my life in the midst of suffering by working, achieving and helping others for as long as I possibly could. Life is incredibly precious and—especially if I know that mine will end soon—I want to make the most of every single minute I have on this Earth.  

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