This week in patient engagement: Topol fights pain, a nurse learns empathy

When Dr. Eric Topol spoke at MedCity ENGAGE in October, he wasn’t quite himself.

The presentation wasn’t the issue. Topol, director of the Scripps Translational Science Institute at San Diego-based Scripps Health, gave a great talk, in which he discussed individualized medicine and stated his belief that patient ownership of health data should be a civil right.

No, Topol was in actual, physical pain from a knee replacement a few months earlier, and he was not very mobile on stage. He mentioned the difficult recovery then, but we had no idea how much pain he really was in until this week.

Sunday, the Washington Post published an op-ed from Topol, in which the cardiologist described his postoperative ordeal. Here’s a sampling:

From the first day of physical therapy, I experienced pain beyond the reach of the prescription painkiller oxycodone. I told myself “no pain, no gain,” but I had a tough time achieving any meaningful flexion until I put a stationary bicycle seat way up high; even so, I screamed in agony for the first three pedal revolutions.

When swelling persisted and my range of motion at four weeks post-surgery was far from adequate, my orthopedist prescribed eight more weeks of intensive physical therapy: one-hour sessions, three times a week at a PT facility, along with extensive home exercises. I came to nickname this physical torture. After each session, with a therapist forcefully bending the knee as far as it could go, the swelling increased and the knee turned purple — on top of giving me profound pain. On many occasions, I could barely walk out of the facility. I continued the required regime of torture at home.

The pain, purple discoloration, swelling and severe “Tin Man” stiffness worsened. I couldn’t sit or stand without considerable discomfort. Unable to sleep more than an hour at a time because of pain, I became desperate. Crying spells were frequent. Searching the Web, my exceptionally supportive wife found a book titled “Arthrofibrosis,” which describes a complication occurring in 2 to 3 percent of patients after knee replacement.

Topol, a cardiologist, said he had never heard of arthrofibrosis, so he read on. “Notably, the book’s suggested management is aggressive physical therapy, which I had complied with to the hilt,” he wrote.

Then, something extraordinary happened. Topol, a longtime proponent of evidence-based medicine, realized that the recommended treatments were not working, so he started experimenting. Finally, he found a physical therapist who took a detailed history to get at the heart of Topol’s real health issues.

“She carefully examined my knee, which was severely inflamed and still swollen, and then recommended that I stop all the weights and exercises I’d been instructed to do and start an entirely different, pain-free exercise program, along with a course of anti-inflammatory medications. The individualized nature of this new plan, which she would have initiated immediately after the surgery for me, was epitomized by her handwritten page of instructions, not the typical preprinted handout for one treatment fits all,” Topol wrote.

The regimen worked. “I needed a different protocol than the standard one that works for the majority. I needed a protocol for patients with histories and conditions like mine,” he said.

And then he gave a little history lesson, talking about the genesis of the term “patient-centered medicine” in 1969 and dredging up a quote from 1927: “The secret of the care of the patient is caring for the patient.”

Topol’s commentary recalls the work of the venerable Dr. Lawrence Weed, inventor of the problem-oriented medical record and the SOAP (subjective, objective, assessment, plan) format for documenting clinical notes. Weed has been advocating for the computerization of medicine for more than half a century, and he essentially created the framework for what is now called clinical decision support.

Weed, now 93, never liked the term evidence-based medicine because it could be no better than an educated guess. From a 2004 article I wrote for the long-defunct Health-IT World:

Weed is a longtime critic of some types of evidence-based medicine because that approach often helps physicians make decisions based on the most probable correlations to a given set of symptoms — not the distinct circumstances of each patient. “The unaided mind uses probabilities in direct proportion to its ignorance of the uniqueness of the situation,” according to Weed.

And now, this zeroing in on knowledge to address patient-specific health problems has a name. Actually, it has several: precision medicine, personalized medicine and Topol’s preferred term, individualized medicine.

Topol at least found compassionate care. Cancer patients at a Kansas City-area hospital — we’re not even sure if it was in Missouri or Kansas — may not have been so lucky for a while. That changed after September, when oncology nurse Lindsay Norris was diagnosed with stage III colorectal adenocarcinoma.

In a personal blog post that has been republished by the Huffington Post and cited in People magazine and in Us magazine, Norris, of Olathe, Kansas, issued a powerful mea culpa.

“Dear every cancer patient I ever took care of, I’m sorry. I didn’t get it,” the 33-year-old Norris began. She then ticked off a long list of things she didn’t get about being on the other side of cancer treatment, as a patient:

• I didn’t get what it felt like to actually hear the words.
• I didn’t get how hard the waiting is.
• I didn’t get how awkward it was to tell other people the news.
• I didn’t get how much you hung on to every word I said to you.
• I didn’t get how much you googled.
• I didn’t get what it felt like to get the sad looks all the time.
• I didn’t get what really goes on at all those “other appointments.”
• I didn’t get how weird it felt to be called “brave.”
• I didn’t get how crazy this makes you.
• I didn’t get why you were always suspicious.
• I didn’t get how confusing “options” really were.
• I didn’t get how hard it is to accept help.
• I didn’t get the mood swings.
• I didn’t get that when you said you were tired, you really meant so much more.
• I didn’t get how much time this really takes away from your life.
• I didn’t get how strange it was to see your body changing so quickly.
• I didn’t get that it hurts to be left out.
• I didn’t get how much you worried about your kids.
• I didn’t get the guilt you felt.
• I didn’t get that it never ends. Never.

At the end of each paragraph of her confession, Norris added, “I’m sorry. I didn’t get it.” It’s reminiscent of the confession of sins on the Jewish holiday of Yom Kippur.

According to the People story, Norris has continued to work throughout her own treatment and has tried to keep her home and family life “as normal as possible,” particularly for the sake of her two young children.

But her attitude has changed. She learned empathy.

“I watched so many of you march through this terrible nightmare with a brave face and determination — without knowing one thing about cancer ahead of time, other than knowing you didn’t ever want to get it. You’ve always been my inspiration and I love each and every one of you,” Norris wrote.

“Nothing brings me more joy that when I see you reach your goals and slowly put yourself back together. I love when we get visits or notes from those of you who are several years out and doing great — it’s good for the oncology nurses’ soul.”

Photo: Ivan Hundric