Below is an excerpt from Katie Rosman’s book, “If You Knew Suzy: A Mother, a Daughter, a Reporter’s Notebook”
Over The Internet, Into My Mom’s Heart
The Power of Compassion
After an operation to remove the cancerous bottom lobe of my mother’s right lung, another operation to remove a chunk of the left, oral chemotherapy, intravenous chemotherapy, more than a month spent in a coma, two so-called targeted therapies, weeks of radiation on the sacrum and a palliative hip replacement, our family found that perhaps the most innovative and effective tonic was something much more simple and yet much more elusive than all the other therapies.
A doctor’s compassion.
As we learned firsthand, a kind bedside manner is not merely a quaint characteristic you hope for in a family doctor. A doctor’s attitude toward a patient and the patient’s family colors every moment of a health crisis. It can help a patient to heal, keep those of us who suffer alongside her saner and healthier, and lower costs.
And yet for all the advances in medical technology and research, simple kindness from health-care providers is all too rare. A recent survey conducted by the Arnold P. Gold Foundation, which advocates for a respectful bedside manner, asked 600 people to describe their interactions with doctors. Twelve percent said they were taken care of by doctors who didn’t know their names. Twenty percent had met with doctors they found “rude or condescending.” Forty-seven percent said they had felt rushed by doctors.
The Invisible Patient
My mother, Suzanne Rosin, was diagnosed with cancer in 2003 when she was 58. She was a Pilates instructor, a hiker, a runner, a dancer and, for 30 years, a nonsmoker. In an effort to beat the cancer, she was willing to submit to just about any treatment. She found doctors willing to administer chemo, zap her with radiation and remove parts of her organ. Harder to come by were those who allowed themselves to look at the person on the other side of the tome-size medical file.
From the start, we were faced with doctors whose delivery of news was soft as sandpaper. After Mom’s biopsy result came back positive, my sister, stepfather, Mom and I went to see a surgeon in Mom’s hometown of Tucson, Ariz. He glanced a her file and looked quickly at the CT scan of her lungs. “Inoperable,” was all he said. The appointment might not have lasted a full five minutes.
We thought the life of our mother was worth fighting for, so we eschewed the recommendation of Dr. Doom, as Mom took to calling him, and found a kind oncologist who told Mom, “If you want to fight, I’ll help you fight.” He connected us to a surgeon who disagreed with Dr. Doom’s certainty. No guarantees, he said, but he would try.
I never could have imagined what a victory it would feel like to find doctors merely willing to try to save the life of a middle-aged woman. An even greater feeling of triumph came after the surgeon successfully removed the tumor.
Is Big Better?
Our joy proved premature. When a second tumor was located, I pushed Mom to have the surgery performed at a large cancer hospital far from her home. Mom objected: She knew and trusted her Tucson doctors and felt there was value in being near her community. But I had become an establishment snob: I scoffed at the idea of her community hospital being a better choice than a big research hospital. I lobbied Mom relentlessly, and she finally gave in.
A few days before Mom’s surgery, I began to regret that lobbying. We went to see the Big Hospital Surgeon for a pre-op appointment. The oncologist who referred us to him had warned us that he had a terrible bedside manner. That oncologist had a knack for understatement.
The surgeon rushed into the examination room and hurried through a pre-op briefing. Finally, my mom screwed up the courage to ask a question: “After the surgery, how will my breathing be?” she asked. “I mean, will I still be able to dance?”
The doctor’s eyes narrowed and darkened. “You’re worried about dancing?” he asked, his voice icy and incredulous. “You’re lucky I’m willing to operate on you at all,” he said before storming out of the room.
Mom burst into tears. “Now he’s going to be mad at me when he’s operating on me!” she said. She dashed out of the examination room, found the doctor in the hallway and began to plead. “Can you forgive me?” she asked him, her hands shaking.
The surgery went well, but the recovery did not. Mom developed pneumonia and ended up in the ICU of the Big Hospital. She was medicated into a coma and put on a respirator.
Reason for Rage
Intellectually, we understood why health-care professionals who work with people who are dying might de personalize their work. And to be fair, when someone you love is sick, you look for something or someone to blame. Yet the doctors gave us plenty of reason to channel our rage in their direction.
Mom languished in a coma for weeks before the surgeon finally agreed to sit down with our family. The oncologist who was overseeing Mom’s case at the hospital also disappeared after Mom was put into the coma. When I finally begged him via email to tell us what the pathology reports from the surgery showed, he informed me via email that Mom’s cancer had spread to her lymph nodes.
Finally, there was an ICU doctor whose job was to care for the hospital’s most vulnerable patients but whose bedside manner was atrocious. He was impossible to pin down for updates on Mom’s condition. He seemed annoyed when talking to us. He snapped at us for having too many visitors in the waiting room. He was blase when Mom showed signs of improvement. When I stopped him in the ICU and pointed to a photograph of Mom in a black spaghetti strap dress from my wedding—I was trying to humanize her to him—he said, “This is what the mother of the bride wears?” Then he walked off.
Yet just as our faith in the goodness of doctors was nearly gone, another man restored it.
This doctor was also an ICU doctor, and though he was responsible for mom’s care far fewer days than we would have wished, his mere presence was reassuring. Whenever he could, he would sit down with us in a closet-size conference room and update us on Mom’s condition. He didn’t rush. He didn’t sugarcoat. He told us it was likely Mom would not survive the pneumonia. But he urged us to pray that he be proved wrong.
One evening, during his State of the Suzy briefing, he let us vent our frustration. When we were done, he said, “I know how you feel.”
I remember the moment vividly. And though during Mom’s hospitalization he never mentioned to me the circumstance that led to his comment, I knew. I knew he had lost someone he loved. And he was telling me he had survived the loss, transcended the loss, worked hard to be a better man because of the loss. For the first time, I considered the possibility that I might live through my mom’s death.
Mom made it through the pneumonia, and back home to Tucson. She died there about 18 months later. She was 60.
Years after the long hospitalization, I tracked down the doctor who filled me with such hope. He told me about the loss of his own father. His father had suffered a stroke, and after his family sat in a waiting room for eight hours before a physician came to update them, the good doctor’s mother turned to him and said (pointedly, as only a mother could): “Is this how you treat your patients?” Six weeks after his father died, my mom landed in his ICU.
“Until you’ve gone through it,” the doctor said to me all those years later, “you can’t realize that when your parent dies, part of you goes away.”