Nancy Maliken's death on June 16, 2010, came only 12 days after routine gallbladder surgery, and it left her family feeling enraged and confused. At 75, the mother of four and grandmother of six had been in good health. An avid birder and gardener, she had spent spring working in the 800 feet of flower beds by her home.
So why did this vigorous woman die so quickly after routine surgery? After talking with her family and the hospital and reviewing her medical records at The Inquirer's request, I still found the answer elusive. I found concerns — a blood infection, a fall she suffered in the hospital, a misplaced feeding tube her husband reported — but no clear errors that contributed to her death.
The case shows how complicated hospital care can be, and how uncared for people can feel, even in the midst of a modern medical center bristling with technology.
Sometimes the care we need most is a touch or a trusted caregiver to talk to. And that's exactly what our high-tech system can be lacking.
Nancy was admitted to Phoenixville Hospital on June 6, 2010. Two days before, she had had uncomplicated gallbladder surgery for pancreatitis. Abdominal pain, weakness, and a bad cough had sent her to the emergency room. Doctors started her on IV antibiotics.
As her status worsened, a team of doctors set upon her. To treat her abdominal pain, the blood infection, and her newly failing heart, she was seen by a gastroenterologist, a general surgeon, a pulmonologist, an infectious-disease specialist, and a cardiologist along with her primary doctor, records showed. An interventional radiologist drained a liter of fluid off her right lung to help her breathing. She was moved to an ICU when her condition worsened, and placed on a ventilator to support her breathing.
To her family, the blitz of attention didn't add up to good care. "We question why so many doctors were involved in her care, yet none of them seemed to be 'in charge' or aware of what the others were treating her for," Susan Griffin, Nancy's daughter, wrote to Wayne Smith, chief executive officer of Community Health Systems, the for-profit parent of Phoenixville Hospital.
Ben Maliken, Nancy's husband and a retired owner of a capital leasing equipment business, was withering in his assessment.
"To me it was a comedy of errors," said Maliken, who still keeps his wife's sewing room intact and her name on his answering machine. "A guy came in dressed as a clown and pinned a smiley face on her gown, and that smiley face was on her gown for three days, and the bed linens hadn't been changed."
"There were so many little things that happened, but if you put them all together, it would sink the Titanic, and poor Nancy was the victim of it."
Nancy fell in the bathroom unattended, and doctors didn't hurry during emergencies, her husband said.
Nancy's case is important not only for her family but also for the system. Big insurers like Medicare are taking a close look at how patients experience their care. Next year, for example, Medicare will begin rewarding hospitals that get high evaluations from patients.
The evidence shows hospitals and doctors can do a lot better.
"Good communication and counseling can suffer when a patient's care becomes highly complex," noted Paul Cleary, dean of the Yale School of Public Health and an expert on how patients experience medical care. "Sometimes just getting feedback and understanding the patient's experience are sufficient."
When Nancy Maliken passed away on June 16, 2010, from heart failure and an overwhelming blood infection, her family felt only one caregiver had been most there for them: David Stepansky, an internist who, along with his father, William Stepansky, a family doctor, had cared for the family for close to 50 years. When the family needed help on Nancy's care, they reached out to him. "I trust him as a doctor and I trust him as a friend," said Ben Maliken.
A close, long-term relationship between hospitalized patient and doctor, like the one the Malikens had with Stepansky, is increasingly rare. Especially when care becomes more complicated, patients face a trade-off: They often must sacrifice familiarity and intimacy for specialized expertise.
"We understand that patients and family members desire a high level of information during a hospitalization, and all share in the responsibility for communications," Steve Tullman, the chief executive officer of Phoenixville Hospital, responded in a statement. "We encourage our patients and their family members to take an active role in communications regarding clinical care, service, and the overall environment of care."
Some hospitals fare better in meeting patients' needs. According to the Medicare-approved surveys, which evaluate how care is experienced at hospitals nationally, Phoenixville's patients were slightly less likely to report that doctors always communicated well compared to the national average. Phoenixville also fared less well in patients' always receiving help as soon as they wanted it, another area in which the Malikens felt Nancy's care fell short. Phoenixville fared well in other areas.
"We recognize the importance of patient satisfaction and value the feedback provided through" the survey scores, Tullman wrote. "Improving the satisfaction of our patients is an ongoing effort."
While David Stepansky wouldn't comment on Nancy Maliken's care, it was probably no accident the family felt comforted by him. In the afterword he wrote for a book by his brother Paul on their father, The Last Family Doctor, he showed his sensitivity for the challenges that hospitalized patients and their families face.
"Health care has become a morass of entangled, and at times conflicting, influences that often confound and bewilder," he wrote. "The role of the primary physician in helping a patient both deal with his illness and navigate the health-care system is vital."
The care Nancy Maliken got at the end of her life shouldn't be forgotten. It shows what needs to be improved.