A deadly information gap
Many doctors lack the motivation to communicate with each other
MY WORK as a doctor only partly prepared me for my 84-year-old mother’s recent brush with death. During her illness, “job one’’ became helping her navigate the shoals of our health care system so that she could survive her medical conditions. If she hadn’t survived, her death certificate would have listed a heart attack and a diabetic emergency as the causes. The sad truth is the actual cause would have been a lack of communication between her doctors. The antidote to this all-too-common scenario lies in the state’s plan to switch from fee-for-service payments to more coordinated treatment, and in our much-maligned national health reform law, which contains a critical mechanism to improve communication and care.
The usual experience of a sick older person today is similar to that of an American traveling in a foreign country with no passport, no ability to speak or read the language, and no tour guide, all while deathly ill, often hungry and thirsty, exhausted, confused, and frightened. During my mother’s illness, my sister (a lawyer) and I were her “health care navigators,’’ and together we managed the treacherous voyage.
In the hospital, after her heart attack, my mother’s diabetes doctors weren’t allowed to prescribe her medications or diet because she was on a cardiology unit. Despite good intentions, the hospital almost killed her by giving her 32 ounces of apple juice one day, causing her blood sugar to rise to a dangerous level. To compensate, they had to give her a lot of extra insulin, which caused her blood sugar to drop precipitously. At one point they had to resuscitate her because her blood sugar went so low. This happened because the diabetes doctors had almost no real-time way to communicate with the cardiology doctors. They needed a navigator — a knowledgeable intermediary — to make sense of the overall picture and connect the doctors to each other.
We doctors typically get paid only when we interact directly with patients. Due to over-interpreted privacy laws, the lack of compensation for time spent on communication, and disconnected systems, it’s difficult and costs us money to communicate with each other. Each doctor practicing in a different part of the system — hospitals, doctors’ offices, nursing homes — has information critical to the decision-making of other doctors. Yet the system works against us if we try to make that vital connection.
Under the national reform law, 11 months from now doctors and hospitals will have an opportunity to create accountable care organizations. These connected networks of providers will benefit from, rather than be sanctioned for, communicating and coordinating care. This should save both money and misery, as in the case of my mother’s resuscitation that shouldn’t have been necessary.
This missing, yet essential, communication can take many forms. “She’s not able to tell me her history,’’ was the refrain I heard so often from hospital doctors who didn’t know what to make of a well-educated, elderly lady who couldn’t remember what her near-lethal blood sugar level had been after her insulin pump failed and brought on her heart attack. She couldn’t say what her dose of insulin had been changed to during her last visit with her primary care physician. She couldn’t remember these things because she was too sick to remember.
If the hospital doctors had spoken to her primary care physician, they could have had all the information they needed to guide their decisions. But hospital doctors often don’t communicate with office doctors, leaving the patient to fend for herself, just when most vulnerable. In addition, office doctors are responsible for a patient’s care after she leaves the hospital, but frequently don’t even know that she’s been hospitalized until she returns to the office.
When my mother became stable enough to leave the ICU, she was transferred to a step-down unit only two doors away, but with a whole new medical team — doctors, nurses, aides, case managers. And every new clinician had to read the paper chart, or if unable to decipher it, “interview’’ my mother again. “She’s not able to tell me her history. . .’’ over and over again. Exasperated, my sister introduced us with, “Hi, this is my sister, she’s a doctor. And I’m a lawyer.’’
Patients should not need a doctor and a lawyer in the family in order to get appropriate medical care. My mother survived her near fatal illness because she had knowledgeable, relentless insiders to advocate and communicate for her.
The health reform law and its groundbreaking accountable care organizations are under attack. This reform deserves public support. Otherwise, next time you need care, be prepared to take a lawyer and a doctor with you.
Madeleine Biondolillo, MD, is corporate medical director of Radius Management Services, a long-term care company based in Southborough.