Your Medical Mind_ How to Decide What Is Right for You - Jerome Groopman [76]
The limits written in Ruth’s advance directive were explicit and incorporated views about what treatment was worthwhile in light of her previous experiences with kidney disease and heart surgery. However, at this point in her illness, the doctors believed that Ruth’s condition was treatable and that she could regain a healthy and active life if she agreed to this temporary intervention. They felt that holding strictly to the wishes in her advance directive was not in her best interests. Yet without her explicit permission, they couldn’t treat her.
“Okay,” Ruth said. “I’ll do it.”
Ruth’s blood pressure rose as her oxygen levels improved on the ventilator. But her fevers continued. The doctor in the ICU found Naomi and showed her Ruth’s CT scan. “Can you see the wire there?” he asked as he walked her through the images on the computer screen. She saw a loop of metal that seemed to be suspended within the bone.
“I couldn’t believe how mangled and loose the wire was. It was undone,” Naomi told us. “When I saw the images, I understood a lot more about my mother’s physical health.”
The doctor explained that “there is a deep infection in the bone, called osteomyelitis. The bacteria track along the wire, which makes it difficult for the antibiotics to clear the infection.”
This infection would not be readily eradicated with intravenous antibiotics. The doctor told Naomi that surgery was required to remove the wire and take out the fragments of bone seeded with bacteria. This would leave a gaping hole in Ruth’s breastbone. Then a second operation would be required to repair the bone and close the skin.
Later that day, the infectious disease specialist arrived. She took Naomi and her stepfather to a quiet room next to the ICU. Naomi told us, “She was very honest. She said Mom was not doing well, and she couldn’t beat this, even with surgery.”
Not long after the infectious disease specialist left, a thoracic surgeon arrived to evaluate Ruth. After he reviewed the CT scan and examined her, he also met with Naomi and her stepfather. “He was completely confident,” Naomi recalled. “He told us in no uncertain terms, ‘We can do this.’ Even though he explained that moving her to the operating room was a risk in itself, the surgeon said he was sure that he could successfully remove the wire and take out the infected bone.” Naomi paused and then said, “We were getting mixed messages. It was confusing.”
Ruth’s surrogates, her husband and Naomi, were caught in a clash of conflicting expert opinions about treatment and prognosis: The infectious disease specialist predicted that Ruth would ultimately die from her infection, while the thoracic surgeon asserted that she could be cured with an operation. As illness becomes more severe and choices must be made with greater urgency, decisional conflict becomes acute. Painful dilemmas for patients and surrogates are frequent, whether it be differing opinions about the success or failure of a particular treatment or the patient’s overall prognosis. This provides further insight into why the SUPPORT research might not have succeeded by offering “enhanced communication.” Communication per se doesn’t necessarily resolve differing opinions or reduce stark uncertainties in predicting the outcome of an operation like the one Ruth faced.
Naomi asked the surgeon about the skin, burned from radiation and now weeping pus. “We’ll put a sponge in, and later do a flap procedure to reconstruct the area.” The surgeon emphasized that it was imperative to perform the procedure as soon as possible. “I’ve scheduled her tentatively for tomorrow,” he said.
Naomi told us, “We had to decide quickly. This could possibly save her.”
She and her stepfather spent nearly two hours discussing the decision. “We ultimately said no,” Naomi explained, “because if my mom woke up with