Your Medical Mind_ How to Decide What Is Right for You - Jerome Groopman [78]
Ruth couldn’t speak but shook her head repeatedly—no, no, no—and curled her lips. But then she moved her head back, closed her eyes, and did not fight when the tube was reinserted into her trachea. She fell asleep, but when she awoke back on the ventilator, she was angry.
Over the next two days, the doctors tried to have Ruth sit up in a chair, hoping that her lungs might more efficiently capture the oxygen if her chest was at a higher angle. “My mom hated being moved,” Naomi told us. “Just getting from the bed to the chair was torture.”
The doctors explained that the tube in her throat had been in place too long and must be removed. If she still couldn’t breathe on her own, the next step would be a tracheostomy, a procedure where a hole is made in the neck and a tube inserted directly into the trachea rather than through the mouth. Then she could be discharged to a rehabilitation facility. Once she recovered, the tracheostomy could be closed, and she would breathe on her own.
Ruth wrote in her trembling script, “NO.” She refused the tracheostomy. She would never go to a rehab facility.
The ICU doctor told Naomi, “We need to see again if she can breathe on her own. If she can’t, she will need the tracheostomy.” So later that day, the ICU team removed the tube and placed her on an oxygen mask. Her primary care physician stood by the bedside.
Within seconds, Ruth lunged forward, gasping for air. “We need to do that tracheostomy,” the ICU doctor said.
Ruth shook her head no. “If you make that choice, you won’t live,” he said bluntly.
“No,” Ruth said in a reedy whisper.
Naomi saw the shock register on the faces of the doctor and nurse. Ruth’s husband threw himself on her bed. “Please, Ruth, please,” he cried, sobbing.
Ruth shook her head.
The doctor fitted the oxygen mask over Ruth’s face. She continued to labor in her breathing through the day. Her primary care doctor promised to check in on her periodically. Naomi and her stepfather sat by Ruth’s bed. Naomi said, “Mom, is there anything I can do for you?” Leaning in close to her mother, she tried to read her mother’s lips. “Iced tea?” Naomi asked. She knew her mother loved this drink. The same nurse who had convinced Ruth to go on the ventilator when she told the story of her father brought a glass to the bedside. Naomi lifted the glass of iced tea to Ruth’s mouth. She took a small sip, laid her head back against the pillow, and closed her eyes.
“I stayed awake all night with her so she would not be alone. In the morning, the doctor told me it would be okay to go home, freshen up, and come back in an hour or two. They would call if anything changed.”
As Naomi stepped out of the shower, the phone was ringing. It was the hospital. “Your mother’s failing. You need to come in,” a nurse said.
“At the end, it was two minutes,” Naomi said. “They told me she had passed just two minutes before I entered the room.” She paused. “I think it is easier for people to leave when their loved ones are not in the room. For my mother to leave us was very hard. She was so brave. After Mom was gone, I got in bed with her and I cried.”
We spoke with Naomi again a year after Ruth’s death. She reflected on the experience. “My mother was always very clear about what she wanted. As hard as it was at the end, I felt that we honored her wishes. But sometimes it wasn’t clear if what the doctors were proposing would fit with my mother’s wishes or not. I had to keep thinking, Is this treatment consistent with my mother’s wishes if it is only temporary? Should she consider this option? It wasn’t always obvious. It was sometimes very confusing for me.”
While Ruth Adler was consistent in what she wanted, that consistency didn’t make it any easier for her surrogates to know if a particular intervention respected her advance directive. This dilemma isn’t unusual, as Dr. Terri Fried and John O’Leary of Yale found when they interviewed sixty-four bereaved family members