"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." When Madeleine Biondolillo offered that opinion, in an op-ed article for the Boston Globe, she was speaking both as a physician and as a daughter — one who nearly lost her mother Eloise in a preventable medical crisis.
"My work as a doctor only partly prepared me for my 84-year-old mother’s brush with death" in August 2010, Madeleine says now. Eloise Kayton lives in northern New Jersey near Madeleine’s sister Loraine, an attorney. The two were vacationing on Long Island when Eloise, a diabetic, accidentally stayed too long in the swimming pool "and essentially drowned her insulin pump so it stopped working," says Madeleine. "As her blood sugar rose, her mental faculties started to decline, and on her own she couldn’t figure out how to fix the pump."
By the time Loraine found her mother, Eloise was lethargic and her blood sugar was extremely high. Though Loraine immediately took Eloise to the hospital, her heart had been working so hard that before she could get treatment, she had a heart attack.
If Eloise had not survived, says Biondolillo, "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."
As often happens with elderly patients, after the heart attack Eloise had a problem swallowing and the easiest thing for her to swallow was thickened liquids. The only such liquid the hospital had was thickened apple juice, and overnight — when neither Madeleine nor Loraine was present to remind the staff that their mother was diabetic — the staff let the parched Eloise drink as much as she wanted.
Because Eloise was hospitalized in a cardiology unit, "my mother’s diabetes doctors weren’t allowed to prescribe her medications or diet," says Madeleine. So though the staff attending the thirsty Eloise had "good intentions, the hospital almost killed her by giving her 32 ounces of apple juice, causing her blood sugar to rise to a dangerous level," Madeleine says. "To compensate, they had to give her a lot of extra insulin, which caused her blood sugar to drop precipitously so at one point they had to resuscitate her because her blood sugar went so low.
"My sister and I got back to the hospital and nobody told us this. I'm thinking, 'Mom doesn't look so good, she must have had a bad night.' The daughter of the woman in the next bed is the person who told us — she said, 'In the night your mom was gurgling so I went and got the nurse and they brought in all this equipment' and I realized they had had to resuscitate her.
"Nobody decided, 'Let's kill this woman with apple juice.' It was a series of errors. But it happened because the diabetes doctors had almost no real-time way to communicate with the cardiology doctors." For the rest of Eloise’s hospital stay, says Madeleine, "Job One became helping her navigate the shoals of our health care system so that she could survive her medical conditions." But Madeleine perceived her mother's situation as typical of a larger, systemic problem — and to bring attention to that, she wrote about Eloise's ordeal in the Globe op-ed.
"We doctors typically get paid only when we interact directly with patients," Madeleine wrote. "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 reforms mandated by the federal Affordable Care Act, Madeleine wrote,"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...
"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."
The situation became so exasperating, Madeleine says, that Loraine began using this phrase to introduce the two of them to each successive round of providers: "Hi, this is my sister, she's a doctor. And I'm a lawyer."
Madeleine's decision to become a doctor was inspired in part by seeing how Eloise, a psychoanalyst until she retired in 2007, was able to help people. In spring 2011, Madeleine became Bureau Director for Health Care Safety and Quality in the Massachusetts Department of Public Health, charged with addressing the kind of communication and coordination issues she saw during her mother's hospitalization.
Eloise survived her near-fatal illness "because she had knowledgeable, relentless insiders to advocate and communicate for her," Madeleine concluded in the Globe article. "(But) patients should not need a doctor and a lawyer in the family in order to get appropriate medical care."