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Late in the evening, Ruth dozed off, and the resident in the intensive care unit told Naomi that it was fine to go home. But in the middle of the night she received a call from the resident. Ruth had developed atrial fibrillation. As we discussed previously, this is an abnormal heart rhythm that can both reduce the output of blood to the tissues and cause clots to form, which could lead to a stroke. The ICU doctor wanted to know if Ruth should be cardioverted, a procedure where an electric shock is applied over the chest wall and transmitted to the heart to return the disturbed rhythm to normal.

Ruth’s health proxy was Naomi’s stepfather, and she reminded the doctor of this. When the doctor called him, he said, “Thank you for letting me know. But we are a party of two. Naomi and I decide together. We will call you back in a few minutes.” They spoke briefly, and he asked her to call the doctor back and give their permission to go ahead with the cardioversion.

“Okay,” the doctor said when Naomi called him. “But we’re not getting clear direction from your family about what kinds of measures to take. You’re not being consistent.”

Naomi knew he was right. But it was hard to know what was consistent with her mother’s wishes. She and her stepfather believed an electric shock was a temporary intervention, one that didn’t seem to be “heroic” or “artificially sustaining” her. On the other hand, her mother might not see it that way.

The telephone rang again. The doctor told Naomi that the atrial fibrillation had resolved on its own, and there was no need to cardiovert Ruth. “But it may happen again,” the doctor warned, “and we don’t always have the time to call you.”

Naomi recalled that “this was helpful. It really put into focus for us how we had to be explicit, and try to set up a process and rules that anticipated these kinds of questions.

“I knew that in the future I had to say no,” Naomi told us. But she was still shaken by the burden of this decision, even while sharing it with her stepfather.

Naomi and her stepfather agreed about Ruth’s care. But there are frequently several family members gathered around the bedside of a severely ill patient, and they may disagree about what treatments are best for their loved one. They are each trying to reconcile their wish to do everything possible for the patient and the terrible fear that they may simply be prolonging his or her suffering before an inevitable end. It isn’t surprising that family members or other surrogates are often not of one mind. This diversity of opinion may also account for the results from the SUPPORT research: Giving family members information does not automatically generate consensus.

The next day, Naomi and her stepfather called Ruth’s primary care doctor. “He agreed that ‘No’ would be my mother’s wish,” Naomi told us. “Ultimately, we had to honor my mother’s wishes, even though they were not what we wanted.”

While the primary care doctor didn’t try to negotiate with Ruth, her husband did. Each morning, he sat by her bedside and spoke to her, trying to inspire her to continue to fight. Nearly a week had passed since the tube had been placed in her trachea. Ruth was awake and alert, and although her hand trembled, she could write a few words on a notepad. At other times, Naomi was able to read her lips as she tried to mouth words around the tube. Naomi felt acutely aware of her mother’s mental clarity. “Her brain was completely alert, but her body was compromised,” Naomi told us. “Everything my mother feared was happening to her.”

The doctors explained that her tube couldn’t stay in the trachea much longer than a week, since it might irreparably damage the airway tissue. “Today is the day,” the doctor said. “We will take the tube out and hope she can breathe on her own.”

As soon as the tube was removed, Ruth began gasping for breath. “She was arched forward, her arms reaching out like someone trying to draw in air from a window.”

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