From the New York Times
Lately when I see patients nodding their heads at the end of a visit, as if in agreement with the therapeutic plan, I can’t help but remember Jack.
Jack (not his real name) had barely entered middle age when I met him, a hospital patient who suffered from diabetes, high blood pressure, vascular disease and kidney failure. I spent about a week caring for him, covering temporarily for a colleague who was away, and I quickly learned from the nurses that Jack was a well-known figure on the ward.
A former professional athlete and a gifted raconteur, Jack never tired of recounting his past glories to anyone who would listen, even if his audience happened to be the one person in the hospital who had no idea of how his sport was played. Over the course of that week, I heard about his last-minute triumphs against opposing teams, the coaches and fans who followed his every move, and the perks, financial and otherwise, that came with being part of a winning team. I remember Jack’s eyes lighting up during these stories; his arms would wave wildly as if he were about to catch a ball, and his mouth would open so wide with laughter that I could see the fillings glittering within.
But it was always difficult, as I watched Jack come alive, to reconcile those glorious stories with the man sitting on the edge of the bed. His muscles had wasted away so much that I could see the graceful undulations of the long bones of his arms, count the ribs on his chest, and observe the tendons flexing on the back of his hand.
It was also hard to miss Jack’s legs, or what remained of them. On the left, his leg had been amputated below the knee; on the right, he had a small stump that ended at what would have been mid-thigh.
Despite his professional successes, Jack had done little to care for himself over the years. He bounced in and out of the hospital, spending progressively less time at home and more time as an inpatient. He ignored his high blood pressure for years, irreversibly damaging his heart and kidneys. He neglected to control his blood sugar and developed diabetic footulcers that grew larger and never healed, leaving his doctors with no options other than to amputate at progressively higher levels.
Some of the doctors and nurses thought Jack took such poor care of himself because he had taken to drugs. Others believed that the gifted athlete refused to acknowledge that his body could ever betray him. But I have always wondered if it was because we never explained his condition and the importance of self-care in a way that rang true to him.
Each day that I saw Jack, I examined and dressed an open wound at the base of one of his stumps. The stump had become infected at home but improved in the hospital with regular dressing changes and antibiotics. From time to time, I would look at Jack as I explained, in “laymen’s terms,” what I was doing with gauze and the antibiotics. He would nod quietly, but his eyes would go blank.
Once I persisted in asking him about how he managed his diabetes at home. I did not ask him as someone might ask a storyteller, an athlete, a once acclaimed celebrity of sorts; rather, I was the doctor, pressed for time, speaking to one of many patients. Jack smiled sheepishly in response, then with a grand gesture waved away both inquisition and inquisitor.
Jack was later discharged home, and a few months later, I asked my colleague how he had fared.
“He died,” my colleague answered. “He went home and didn’t take his antibiotics. His diabetes got out of control, and he ended up dying in the I.C.U. from a disseminated infection.”
Memories of Jack played over again in my mind one recent day as I saw patients. I worried about these new patients because as much as I’d like to believe that Jack was an exception, recent studies have shown that almost half of all Americans have trouble obtaining, understanding or acting on information that is important to their health. They suffer from what researchers now term “limited health literacy.”
In a system where much of patient care happens at home and where patients and their families shoulder a large part of the health care responsibilities, limited health literacy can have devastating consequences. Patients with limited health literacy tend to be in poorer health, partake less frequently of preventive health measures and screening, and become hospitalized more frequently, resulting in an estimated annual cost of $50 billion to $73 billion.
A recent study put the cost in even starker terms: elderly patients with limited health literacy are almost twice as likely to die.
Jack, I now suspect, had limited health literacy. He didn’t comprehend the severity and complexity of his diseases and couldn’t care for himself, in part, because no health care professional had ever spoken to him in a way that he could process. And his pride prevented him from asking for help.
Several health care groups and government agencies have initiated national campaigns — like Speak Up and Healthy People 2010 — to address health literacy. These efforts encourage patients to take a more active role in educating themselves about their health and, not surprisingly, focus on ways to improve the interaction between patients and doctors.
I spoke recently to Dr. Rebecca L. Sudore, assistant professor of medicine at the University of California, San Francisco, and lead author on the landmark study that linked limited health literacy to higher mortality rates. I asked her about the patient-doctor relationship and health literacy.
“Over the years,” she said, “the health care system has gone from a paternalistic, doctor-centered model to one that is patient-centered, with shared decision-making on every level. I think it’s great, but that really places high literacy demands on patients. We expect them to go home with diabetes or congestive heart failure or an organ transplant and just take care of themselves.“
Dr. Sudore spoke at length about the expectations and assumptions in the patient-doctor relationship. “There’s a lot of power differential, and patients have learned to be deferential. Those patients who are disenfranchised and who have been treated poorly in the medical system don’t have the confidence to ask for help or explanations. There’s a sense of shame around this, and patients won’t always tell you that they don’t understand. That’s just way too embarrassing.”
“For doctors,” she added, “there just isn’t any time to sit down and make sure your patient understands. Doctors have these external pressures. They have 15 to 20 minute interactions in the clinic; and on the wards they are running from patient to patient.”
And, she said, many of us will be touched by limited health literacy at some point in our lives. “We will be caretakers, or even patients ourselves, who have to interact with the health care environment. And research has shown that even those who are educated can still have low health literacy.”
Dr. Sudore went on to suggest ways in which doctors and patients might address health literacy. “One thing we tell clinicians to do is to ’teach back’ or ’teach to goal.’ A clinician might say, ’I’ve just said a lot of things and I want to make sure I’ve explained things clearly to you. Can you explain things back to me, so I know you understand?’ This discussion creates a kind of a shared understanding. The doctor may not have the time, but these questions can bring up red flags that can be discussed during a follow-up appointment.”
For patients, Dr. Sudore recommended taking the initiative to tell the doctor how much is understood. “You should go back to the doctor and say, ’What I hear you saying is this. Did I get that right?’ Or, ’I’m leaving the hospital. You just gave me this new drug, but I’m still supposed to take all my other medications. Is that right?’ ”
Dr. Sudore reflected for a moment on the season. “I’ve been doing my taxes, and I keep thinking that it would be great if someone wrote these forms at the sixth grade level, in a more straightforward way. All of us just prefer information that is easier to understand.”
“And in something as charged as health care,” she said, “people who understand can get more.”
Join the discussion on the Well blog, “Doctors Talk, but Do Patients Understand?”