How I got through to Kari's mother

Doctors often hide behind medical jargon to avoid dealing with tough emotional issues. I told it straight.

By Curtis J. Rosebraugh, MD, MPH
Internist/Olney, MD

We all have that one patient encounter that changes our lives. Mine occurred 15 years ago while I was a senior resident rotating through the pulmonary critical care unit. I'd been called to the surgical ICU to accept a "train wreck" in transfer. Kari (not her real name) was a 24-year-old whose life during the past year had been filled with great joy and profound tragedy.

Seven months before, on his way home from work to celebrate the news that Kari was pregnant with their first child, Kari's husband had been in a motor vehicle accident and sustained a severe head injury. After a prolonged downhill course, he died.

Kari eventually delivered a beautiful baby boy, but she had serious complications. Despite aggressive care, her condition deteriorated. Kari's ventilator dependence had progressed to the point that the machine had recently been placed on its maximal settings. Now it was my job to transfer Kari to the same unit where her husband had died.

I noticed a mobile hanging above her hospital bed with pictures of her new baby, her deceased husband, and herself before hospitalization. It was hard to believe that the woman in the photo was now the paralyzed patient lying in bed attached to a ventilator, two chest tubes, and a Swan, and suffering from a total body subcutaneous emphysema that had distorted her features.

After evaluating Kari, I explained to her mother that she was in serious condition and recovery would be a hard-fought battle. I also knew that if the ventilator settings could not be decreased, the machine that was presently saving her life would permanently ruin her lungs and kill her.

Bob, the pulmonary fellow, had incredible clinical skills but a dry, technical personality. When Kari's mother asked for a prognosis, Bob seemed hesitant or unable to discuss her condition using terminology that Kari's mother could understand. The attending was no more forthcoming. They talked about the technical aspects of care—cardiac output, PEEP, SVR, O₂ saturation, Swan readings, and urine output—and seemed satisfied that they had adequately conveyed the gravity of Kari's situation.

Kari's mother would always ask me to come back after rounds to explain in layman's terms. But, because the unit's chain of command strongly discouraged residents from overstepping their authority, I deferred discussions of Kari's prognosis to Bob. It was frustrating to Kari's family and to me that such excellent clinicians as Bob and the attending couldn't step out from behind their professional veneer and talk to Kari's mother like a human being. Reasonable, emotionally strong, loving, and no-nonsense, all she wanted was the bottom line.

For two weeks, Bob and I took meticulous care of Kari, but every attempt to decrease the ventilator settings failed. Kari had permanent, irreversible lung damage and would soon die. I explained to Bob and the attending that the family didn't understand this and wasn't prepared. But they continued to avoid end-of-life issues, speaking to the family only in techno-slang.

One morning, Kari became unstable. The high ventilator settings had caused another pneumothorax. Bob and I ushered the family out of the room and worked to place a third chest tube in Kari's lung cavity. We were successful; the lung re-expanded, restoring her fragile stability.

After the procedure, Kari's mother asked Bob the question that he had not once answered: "What are my daughter's chances?" Being used to Bob's routine of not answering her, she purposefully moved over to block the door. She went on to explain that Kari had watched her husband die seven months earlier and never wanted herself to have a prolonged death if there was no hope of recovery. A defiant posture conveyed that, this time, Kari's mother would require an answer she understood before she would permit Bob to leave the room.

He took a deep breath, cleared his throat, and said, "Superoxide radicals." I watched, stunned and outraged, as Bob proceeded to give a stuttering, 20-minute, highly technical soliloquy on how high oxygen concentrations had caused superoxide radicals, which were the root of all evil. When Kari's mother's eyes glazed over, Bob made a successful break for the door. I watched her shoulders droop and then made my own awkward exit.

Later that day, I was at the park with my 2-year-old son. My pager went off. It was Kari's mother. Would I mind coming up to the hospital, alone, to talk to her and the family?

Kari's mother, stepfather, and both sets of grandparents were there. Kari's mother fixed me with her unblinking stare, and said, "Today, there is something you can do for me. Tell me what Kari's chances are." My head started spinning. Other residents who had rotated through the unit and discussed end-of-life issues with patients and families had been chastised. But I felt that Kari's family had a right to know the truth, even if it was bad. How much extra suffering had this family endured by not knowing what we truly thought about Kari's condition?

The slight quiver in my voice betrayed my emotions. "The machine that has kept her alive for so long, prolonging her life, has permanently damaged her lungs and is now prolonging her death," I said. Kari's mother hugged me and said, "Thank you. Please write an order that nothing further be done."

Although I had broken bad news to families before, this was the most emotionally draining experience I'd ever had. All the feelings I'd stored up for so long threatened to spill out at once. I struggled to keep a hardened professional air as I called Bob, explained the encounter to him, and wrote a "Do Not Resuscitate" order.

That night, as I lay in bed and watched my sleeping wife breathe, fear engulfed me. I was having trouble separating Kari from my wife, who was eight months pregnant. I knew how I would feel if death took her at a young age, and the burden I would be under raising our children on my own. I tried to imagine how I would feel if I were Kari's mother, in a state of chronic stress, in a foreign environment, being bombarded with a language that I didn't comprehend. I wondered how I would respond if a physician took good technical care of my wife but was unable to prepare me for her inevitable death.

The call came at 4 a.m. It was Bob. Kari's mother had asked that the machine be shut off. Kari had joined her husband. Bob said, "Take the day off and spend it with your wife. I'll see you tomorrow."

I still think about Kari as I now try to help medical students and residents in their own struggle to find the right balance between professionalism and warmth. I wonder why Bob or the attending couldn't tell Kari's mother that Kari was terminal. I guess hiding behind a veneer of techno-slang was their way of shielding their own inability to deal with human emotions.

Although we're teaching residents more interpersonal skills and communication techniques, there is still much we must do. I wonder: How will the next generation of physicians learn to talk to people like Kari's mother?

 

Curtis Rosebraugh. How I got through to Kari's mother. Medical Economics Dec. 9, 2002;79:42.