The caregivers didn’t appear to be talking to one another, Wallace said.
Coordinated care, touted as the key to better, more cost-effective care, is being encouraged through financial rewards and penalties under the 2010 health-care overhaul, as well as by private insurers. But experts say communication failures remain disturbingly common.
“Nobody is responsible for coordinating care,” said Lucian Leape, a Harvard health-policy analyst and a nationally recognized patient safety leader. “That’s the dirty little secret about health care.”
Advocates for hospital patients and their families say confusion about who is managing a patient’s care and the failure of caregivers to collaborate are endemic, contributing to an estimated 44,000 to 98,000 deaths from medical errors each year. A landmark report by the Institute of Medicine in 1999 cited the fragmented health-care system and patients’ reliance on multiple providers as a leading cause of medical mistakes. Leape, who helped author that report, says there have been improvements since, but “we have not done enough.”
Subsequent studies suggest the toll may be even higher than the Institute of Medicine estimated. A 2010 federal report projected that 15,000 Medicare patients every month suffered such serious harm in the hospital that it contributed to their deaths.
Betsy Gabay, 50, of Queens, barely survived her hospital stay last year for a flare-up of ulcerative colitis.
During her 26 days at New York Hospital Queens, she was seen by at least 14 different doctors, she said, and “I couldn’t tell one name from the next. I didn’t know whether it was the gastroenterologist or the nutritionist or the physical therapist.” All the time, she was rapidly deteriorating, suffering from acute abdominal pain and bloody diarrhea, and too weak to get out of bed. The medical staff decided to send her to a rehab hospital.
“I thought I was being sent there to die,” Gabay said.
That’s when her then 74-year-old mother took action. She contacted a physician friend who got Gabay admitted to Mount Sinai Medical Center in Manhattan. By then, Gabay had a blood clot in her lung and a serious bacterial infection. She also needed to have her diseased colon removed. After surgery and treatment at Mount Sinai and several months of recuperation at home, she has made a complete recovery.
Officials at New York Hospital Queens declined numerous requests for comment, citing patient confidentiality.
A new set of doctors
Patients such as Gabay are often surprised to discover that the primary-care physician with whom they have an ongoing relationship isn’t the doctor overseeing their hospital care and is unlikely to be informed about their progress.
Instead, hospitals have staff doctors called hospitalists who are supposed to manage a patient’s care, coordinating the various specialists, managing medications and then overseeing the transition back home.
“I see my job as an orchestra conductor pulling it all together,” said Robert M. Wachter, chief of hospital service at UCSF Medical Center in San Francisco, who coined the term “hospitalist” in 1996. “I may only spend a few minutes in the [patient’s] room, but the other subspecialists are communicating to me, and I’ll integrate it so we give the patient one uniform message.”
But that system is vulnerable to breakdowns. Patients and family members meet hospitalists, along with many other medical specialists, when they’re in crisis. Even when hospitalists explain their role, patients may be too overwhelmed — ill, medicated, disoriented or in denial — to absorb the information. As a result, they often don’t distinguish the hospitalist from the dozens of other caregivers they see.
“Unless the patient has written it down, they will say, ‘Someone was here, but I don’t remember what they said,’ ” said Ilene Corina, founder of PULSE, a nonprofit organization based in New York that works to improve patient safety.
For families, the sense that no one is on top of their loved one’s care can be one of the most harrowing experiences related to a hospital admission.
Miscommunications are also more likely to occur under the strain of heavy workloads and the routine transfer of responsibility from one hospitalist to another during a patient’s stay. Hospitalists routinely work seven to 15 days in a row on shifts that each last 10 to 12 hours to provide patient continuity. But many report juggling too many patients to do their jobs well.
Nearly four in 10 hospitalists responding to a survey from Johns Hopkins University School of Medicine said they struggle with unsafe workloads at least once a week. Nearly a quarter believed their workload “likely contributed” to patient complications, and even deaths. Most of them defined a safe workload as up to 15 patients per shift.
Workload issues are “the elephant in the room that cannot be ignored,” said Henry Michtalik, lead author of the journal article about the survey. “We have to find that balance between safety, quality and efficiency.”
No one in control
Sharon Flank, chief executive of a Silver Spring-based anti-counterfeiting company, saw her mother suffer from one complication after another following lung surgery: a bad reaction to a painkiller, a hernia that required surgery, a serious cardiac problem and a blood clot.
When Flank’s mother went back to the lung surgeon for a postoperative appointment, “she was in miserable shape because all these other horrible things had happened,” Flank said. “But her incision looked good, and the surgeon looks at her and says, ‘I did a beautiful job.’ ”
Patients are most vulnerable to poor coordination when their recovery doesn’t go as planned or a medical mistake has occurred, advocates, patients and others say. That’s when complications — and potential liabilities — often develop.
Karen Curtiss, a Lake Forest, Ill., writer, witnessed what she said were so many mistakes in her father’s hospital care that she founded an advocacy group, Campaign Zero, in response.
Shortly after Curtiss’s father had a lung transplant in 2005, he fell as he tried to make it from the bathroom to his bed without waiting for a nurse. Hospital staff put him in horizontal traction until a neurologist could examine him, even though that position can cause fluid to pool in the lungs. The fall occurred on a Friday, and the neurologist didn’t come until Sunday evening; by then, Curtiss’s father had developed pneumonia, which compromised the newly transplanted lung. Other complications followed, including a blood clot to his lung and a staph infection. He died soon afterward.
“His death certificate said he died of complications of pulmonary fibrosis,” said Curtiss, who has written a handbook for families with loved ones in the hospital. “I think it should have listed every single thing: the complications, the blood clot, a fall, infections, pneumonia.”
Fixing the system
Although the federal government, nonprofit groups and insurers want to improve the system, efforts to boost coordination and teamwork still have a long way to go.
Last summer, the Joint Commission, the nation’s hospital accrediting group, developed a tool for hospitals to help guide communication when a patient is transferred from one hospital setting to another — for instance, from an intensive care unit to a regular floor.
Some medical centers have taken steps to improve communication, assigning color-coded ID tags or scrubs to staff members so patients know who’s a nurse and who’s a doctor, and installing white boards in patient rooms, where a nurse starting a shift can jot down his or her name. At some facilities, hospitalists write their names on those boards, and hand patients and relatives business cards or sticky notes with their photos.
A few hospitals have gone further. At the Mayo Clinic in Rochester, Minn., patients having surgery attend a pre-admission education class so they know “almost to the hour, let alone to the day, what’s going to happen,” said Michael Rock, chief medical officer of Mayo Clinic Hospitals.
In Pennsylvania, Geisinger Health System has developed a checklist on laminated cards that fit in caregivers’ pockets. It includes questions that doctors and nurses need to keep uppermost when reviewing cases, such as: “Is the patient taking high-risk medications? When is the patient going home? Does the patient have any catheters or lines that should come out?”
Consumer advocacy organizations, meanwhile, advise patients entering the hospital to have a relative or close friend, or even a hired hand who has some training, who can communicate on their behalf and be at their side through the hospitalization. [See sidebar]
But not all patients have such advocates, and even when they do, playing that role can place a difficult burden on families or make second-class citizens of those who do not, said Wachter, the hospitalist.
When his own mother had lung surgery in Miami several months ago, “I went down there and didn’t leave her bedside,” he said. “We have to figure out a way to have a system where a patient doesn’t need that.”
Kaiser Health News is an editorially independent program of the Henry J. Kaiser Family Foundation, a nonprofit, nonpartisan health policy research and communication organization not affiliated with Kaiser Permanente.