DNR for a Survivor
The forms sat on my kitchen table for months. As the days went by, mail, newspapers, bills and various household items slowly covered them, like an archeological dig. Hidden but not forgotten, the DNR forms gnawed at me, even as my procrastination grew to monstrous size. How—how—could I make my mother DNR? How could I make this woman, a Holocaust survivor, who endured unimaginable horrors, who held on to life with legendary ferocity, how could I officially stop her fight for life? Yet I knew better, as a doctor, as a teacher of medical ethics, I knew what to do. The trouble was doing it.
My mother lived through the Warsaw Ghetto, the Majdanek death camp, starvation and degradation. But could she survive the nursing home down the street from my house in suburban Chicago? She liked to say that one mother can take care of ten children, but ten children can't take care of one mother. This saying resonated with me in the months of her decline, and in the making of the ultimate DNR decision. I struggled to take care of this decision—ironically, I had led so many end–of–life discussions with families as an emergency physician, as a fellow in medical ethics, as chairman of my hospital's ethics committee, and as a college lecturer in medical ethics. I certainly knew much about this decision. Knowledge is one thing. Saying goodbye to a force of nature is another.
My mother was born in 1924 to a middle–class family in Warsaw. She enjoyed the usual girlhood pursuits, ice–skating, French lessons, girlfriends. All of that came to an end when the Nazis invaded Poland in 1939. Her high school closed, and she always spoke sadly of how she couldn't finish her education. Her gentile friends avoided her. Soon, she and her family were forced into the Warsaw Ghetto. Her father and brother were taken one night, never to be seen again. She survived, miraculously, alongside her mother, in various concentration camps, including Majdanek, specifically designed as a death camp. She didn't speak much about the war in later years, often dismissing our childish questions with a wave of her hand. I do remember when we asked how she could get through all the horrors, she once said, "We wanted to live."
Life in America brought safety, comfort, and for her children, an abundance of food. Years of starvation instilled a great respect, a near insanity, about eating. Being hungry was perhaps one of the greatest misfortunes to befall our easy American lives. In later years, we nicknamed her "the food police," as she inspected everyone's plate to ensure no one wasted any of her delicious cooking. Fondly, I do recall that after I was accepted into an elite Eastern college—during my interview there—after excitedly telling my mother I had been accepted, she congratulated me, but quickly added, "Did you have lunch?"
This was a formidable woman, in so many ways. My father came to call her "The General," [End Page E1] and after some fifty years of marriage, he had learned his marching orders well. Life had been inconceivably cruel to her, yet she never whined, rarely did self–pity enter her vocabulary. Her entire family was gone. "Hitler," as she used to say, "killed my family." Her children, and later her grandchildren, were her focus. She cultivated her garden, literally and figuratively. With a green thumb, she could bring plants back from the dead, or so it seemed. She lived, she loved, and she was loved by many.
And so, when I would get phone calls from the palliative care nurse, I hemmed and hawed, and promised to get back to her. My mother's health had declined to the point she needed full time nursing care. Palliative care was consulted to help with various pain issues. What is her code status, they asked. Initially, when she wasn't doing so poorly, I figured I'd make her a full code, knowing we could always withdraw or curtail therapy based on her clinical condition. With time, she was getting weaker, and the years caught up to her, as they invariably do. Her appetite, once hearty and a source of joy to behold, started to dwindle. The phone calls kept coming. I knew the palliative care nurse. We had served on a committee together. She knew how I felt about futile care, and how I always tried to avoid it, encouraging families to come to face reality. She would look at me with a quizzical look when we would meet at the nursing home, probably wondering how this doctor with ethics training could be stalling such a common decision. "Well, I'll leave the papers with you again," she would say, almost with a resigned expression.
I had become one of those daughters. One of those daughters who couldn't let go, who couldn't bear to imagine a parent's death. I could not believe I was having so much difficulty. I was well aware of the medical issues facing my mother. I was well aware that resuscitation, in her condition, might lead to an even more catastrophic result. Intubation and critical care did seem morally wrong at that point. But how do you tell a general that it's time to end the fight? By this point, she wasn't cognitively able to participate in end–of–life decisions. My sister and brother looked to me to make the DNR decision. My medical and ethics background seemed to make me the natural choice.
DNR decisions always seemed fairly clear to me. The medical indications are reviewed, chance of recovery etc., are weighed carefully. Families usually come to a decision after a lengthy process of informed consent, a discussion of the benefits and burdens, and all the usual medical considerations. As physicians or ethicists, we try to guide families into a decision that seems best for their loved one, as well as for themselves. Objectivity is a luxury. We in the white coats have it, but we don't realize just how important it is. As a daughter, I had lost my objectivity. I had lost that clear-eyed view that years of ethics training and practice had brought me—or at least, I thought had brought me. I was now in the vortex of emotions that come with end-of-life decisions. The risks were high. My emotional tethering could lead me away from making a sound medical and ethical decision. I risked my mother enduring—maybe even surviving—a resuscitation that would not be in her best interests.
Finally, the white coat part of my brain reconciled with the daughter's emotional bonds. DNR papers had to be signed, and I was the one to do it. I must confess I finally took the plunge due to fear. I was afraid that if I continued to procrastinate, she would be coded in the nursing home or ER, and I would blame myself for her further suffering. A selfish motive, to be sure—selfish, but also based on devotion. She had suffered so much in her life. I could not bear to be the agent of more of her pain.
Ultimately, none of us can survive forever. With great sadness, we say goodbye, and if we are fortunate, we can ease our loved one's sufferings. Weeks after signing the DNR order, my mother passed away in the early morning hours, in her bed, without critical care, tubes, or chest compressions. She hadn't been killed, as intended, by the Nazi extermination "fnal solution." Instead, she lived to be 89 years old—a grandmother, great-grandmother, and a blessed memory to a thankful family.
Amen. [End Page E2]