Like all of us, doctors sometimes wind up as patients. When facing difficult decisions about the best treatment for themselves and close relatives, what questions do they ask? What risks do they consider? What calculations do they make?
If we heard their stories, could we learn from them?
Four years ago, when he was 72, Bill Clark, an internal medicine physician in Bath, Maine, had a hip replacement that did not heal well. The prosthesis had to be replaced. About a month after that operation, a serious infection developed in the hip.
To deal with that complication, Clark’s surgeon recommended further surgery (followed by intravenous antibiotics) but offered no guarantee that this would eliminate the infection. An infectious-disease specialist had a more drastic suggestion: Remove the artificial hip for six weeks, an approach certain to wipe out the infection if pathogens were hiding in the prosthesis or in adjacent tissue. But being without a hip meant not walking for weeks.
Despite all his medical knowledge — Clark is a lecturer at Harvard Medical School and past president of the American Academy on Communication in Healthcare — he had trouble deciding what to do.And it was his decision.
He found himself a bit upset that his physicians had not been better at helping him make the choice.
“I wished what had happened was that both of these doctors had said to me, ‘Well, what’s more important to you? Either you can have surgery to wash out the hip but then be left with risk of recurrent infection. Or you can have surgery to remove the prosthesis, with 100 percent certainty of infection cure but not having normal walking for many weeks, followed by surgical placement of another prosthesis.’ I wish they had said clearly, ‘This is a tough decision and these are the options.’ ”
Clark’s main goal was to have a functioning, infection-free hip. For some patients, that might have been the only goal that mattered. For Clark, not to be sitting around for weeks partially incapacitated also mattered a great deal. He understood that not taking out the artificial hip right away involved some risk, as the infection might persist as long as the device remained in place.
He decided to leave the prosthesis in place and go with the surgery to clean out the infection. Part of what motivated him to make that choice was that “while both physicians knew their stuff, one guy works on hips and the other guy works on bacteria.” Things turned out fine. “Such decisions should be made by patients on the basis of what’s most important to them,” he said. “People need to find a way to talk about what their goals are.”
When advising a relative with advanced cancer, he said, he told her that some medical decisions reside within a realm filled with uncertainty and ill-defined risks. In such situations, he said, “information is important but is not the answer. It’s not about the math.”
Some patients want to prolong life at all costs. Some want to avoid extreme pain and be as comfortable as possible. Some want to hold on to life long enough for an old friend to visit.
Clark told his relative that if her physicians were not asking about her goals, then she should initiate that discussion. “And if you can’t have that kind of discussion with your oncologist or your surgeon,” he told her, “then you should change doctors or ask for a consultation with a doctor with whom you can have that kind of discussion.”
When Edward Ahn’s father fell off a ladder, the older man suffered a spinal cord injury and experienced paralysis. His “biggest fear,” Ahn explained, “was that he would be completely dependent upon other people forever.” Knowing what his father was most afraid of gave Ahn, then the chief neurosurgical resident at Maryland Shock Trauma and now a pediatric neurosurgeon at Johns Hopkins, a clear therapeutic goal to pursue.
Ahn had assisted in the treatment of similar patients, but his immediate reaction was aversion to the idea that his father might need surgery. “Surgery is invasive. His spine was going to be reconstructed. We were going to be inside his neck and around major structures and major blood vessels. I don’t think you can get more invasive than that,” he said.
His emotional involvement clouding his judgment, Ahn knew he could not offer dispassionate advice. He sought the opinion of colleagues who would “look at what was happening from the outside,” impartially and without the heat of strong emotions.
Two neurosurgeons offered different recommendations. One recommended surgery that same day: With two herniated discs pressing on the spinal cord, delay might further injure Ahn’s father. The other advised letting him recover for a few days, because performing surgery before the swelling had gone down might make things worse.
By that point, Ahn’s father — a gynecologist/obstetrician experienced in performing surgical procedures — was starting to notice improvement. His strength started to return and he decided to wait. His surgery was done on the fifth day, with a follow-up procedure months later. Ahn, overcoming anxieties about how well he would do given the emotional stresses, assisted in both surgeries.
About 18 years ago, Lars Svensson, chairman of the Cleveland Clinic’s Heart and Vascular Institute, having developed angina, searched for a heart surgeon. He wanted someone who had achieved low mortality rates, low complication rates and excellent long-term outcomes; who used the latest operative techniques; and who possessed what Svensson called “great empathy.”
He wanted that surgeon to be practicing within an excellent program — where cardiologists and surgeons worked well together with good support from their hospital.
He asked colleagues for recommendations — other patients should ask their own doctors for recommendations. Anyone can search the database of the Society of Thoracic Surgeons, but it may be best to rely on a “medical adviser — preferably a physician, a nurse, or someone like that,” he said.
A medical advisor might also offer information on mortality rates, side effects and adverse reactions. “The question is: What does that number mean? It is easy to get to a 1 percent mortality rate by avoiding patients who require high-risk operations.”
Svensson chose a medical center where doctors worked together across the lines of medical specialties. They put him on aggressive medical treatment. He recovered without surgery.
“At a hospital that did not have as much coordinated care by my medical team,” he said, “I could have ended up having surgery.”
Kirsch is a freelance medical and health writer.