A patient survival guide, from a mother who learned too late

A picture of a smiling boy filled the screen behind Helen Haskell.

“This is my son Lewis, who died basically from what’s called failure to rescue in the hospital,” she told the audience at St. Francis Hospital and Medical Center Wednesday.

Eleven years ago, Lewis Blackman, then 15, went to a South Carolina hospital for elective surgery to correct a congenital heart condition. A medication he was given caused a perforated ulcer and internal bleeding. But the medical staff didn’t recognize it.

Helen Haskell

Helen Haskell (Uma Ramiah/The Mirror)

“Nobody can believe that a young healthy boy would be in so much trouble, and so they simply didn’t do anything for 30 hours until he had a cardiac arrest,” Haskell said. “At which point they sprang into action, but it was too late. He had already lost too much blood to be revived.”

Lewis’ death led Haskell to advocate for patient safety. She founded the group Mothers Against Medical Error and got patient safety legislation passed in South Carolina in her son’s name. She spoke at St. Francis as part of the hospital’s Patient Safety Awareness Day, along with state Healthcare Advocate Victoria Veltri, Connecticut Center for Patient Safety Executive Director Jean Rexford and Dr. Scott Ellner, director of surgical quality and a trauma surgeon at St. Francis.

Together, they offered a survival guide of sorts for patients navigating a health care system that, for all its advances, is still riddled with errors and preventable dire outcomes.

Some of Haskell’s advice stemmed from things that hamstrung her family as her son’s health deteriorated in the hospital.

“We did not know who to call,” she said. “It was a weekend, and weekend care can be problematic because the staff is very low. We didn’t know how to climb the hierarchy. We didn’t know how to get past the intern and the nurse, the intern being the first-year resident. They were basically the staff that was on duty that Sunday that my son was dying. And we couldn’t get around them. If we had known who was who, we would’ve been able to ask more intelligently.”

Haskell urged patients to know the chain of command among physicians and nurses when they’re in the hospital, and to know that they can speak to those higher up it if a nurse or physician isn’t available or doesn’t recognize a problem.

Always check the badges of people who come into you room, she said, and if they’re not wearing one, ask who they are and what their role is.

And patients should have an advocate, a trusted person who can come with them to the hospital and, if necessary, read their medical records and discuss their care with the providers.

Other advice:

Read your medical records

Haskell urged patients to look at their medical record while in the hospital, or have a friend or relative do so. The records can show if doctors disagree about the patient’s care, or indicate potential errors. Because doctors and nurses don’t always look at each other’s notes, the patient or advocate can be the one to bridge the information. Nurses aren’t used to having patients ask to view their records, Haskell noted, and suggested setting up a time in advance to do so each day.

Keep a journal

Rexford and Haskell said patients should bring a journal with them that includes a list of medications they take, their doctors, phone numbers of friends, a list of relatives and questions to ask the health care providers. During a hospital stay, patients should record the tests and procedures they receive, the nursing staff and visits by doctors, as well as their vital signs.

Go in prepared

“People tend to go into procedures not knowing what they’re letting themselves in for,” Haskell said. She has heard from patients who say that if they knew what the recovery would be like for an elective procedure, they never would have had it.

She advised patients to learn about the procedure, whether a surgeon will do it all or, if it’s a teaching hospital, whether and how much a resident will participate. What is the complication rate? The infection rate? What will recovery be like? What are the risks and benefits, short- and long-term?

Scott Ellner

Dr. Scott Ellner (Uma Ramiah/The Mirror)

Because surgeons might have their own preferences, they might not volunteer information about an alternative procedure, so Haskell advised patients to ask.

The most important question, she said: What happens if I do nothing?

And when you ask about success or how many times a surgeon has done a procedure, “You need to expect numbers,” Haskell said.

“You don’t want them just to say, ‘Oh, I’ve done it plenty of times,'” she said. “Which is the answer we got when we asked about Lewis’ surgery.”

It turned out other families had gotten the same answer. “The answer was they had not done it very much,” Haskell said. “They counted on the intimidation factor to not have to answer the question.”

Ellner said he appreciates having patients come to his office with a family member many weeks before surgery to discuss the procedure in a quiet environment. They should talk about potential risks and complications, meaningful expectations, the surgeon’s experience with the procedure, whether prosthetics like mesh will be used, and, if it’s a high-risk procedure, the patient’s wishes if he or she ends up needing a breathing tube or a feeding tube.

“There’s nothing routine about surgery,” Ellner said. Even a day surgery has risks, and different people react differently to medications and procedures.

Veltri said everybody should have an advance directive, which explains the care they want if they are unable to communicate it. Connecticut-specific advance directive forms are available free through the attorney general’s website.

Avoid infections

“This is the biggest problem that you will encounter in the hospital,” Haskell said. “It’s the thing you need to watch out for the most. Bacteria are everywhere and hospitals have more than their share of them because they are full of sick people.”

About 1 in 20 hospitalized patients will contract a hospital-associated infection while receiving medical care for other conditions, according to the Centers for Disease Control and Prevention. The CDC estimated that there were 1.7 million hospital-associated infections in U.S. hospitals in 2002, and estimated that there were 99,000 deaths associated with the infections.

Major sources of bacteria include television remotes, lab coats, curtains between beds in double rooms, and bed rails, Haskell said. That’s in addition to medical sources, like intravenous catheters, ventilators, central lines, urinary catheters, surgery and dialysis.

She suggested that patients bring their own wipes with them and wipe down high-touch surfaces in their hospital rooms. Rexford suggested educating family members about the need to wash their hands and not sit on the patient’s bed.

Dr. David Shapiro, a critical care surgeon at St. Francis, said patients shouldn’t be afraid to ask if their health care provider washed his or her hands. And if the provider says that he or she “foamed in,” he added, it’s OK to request hand-washing instead.

“You just say, ‘I have a thing about it,'” Haskell said.

Dr. Danyal Ibrahim, St. Francis’ director of medical toxicology, wondered how patients could feel comfortable doing so without worrying that it will affect their care.

“The reality is we know that in a hospital, in our culture, in our current environment, if I do all of these things, there is a good possibility that the staff will label me as a difficult patient, paranoid, you name it,” he said. “How do you deal with that?”

“You do it discretely,” Haskell said. “You don’t have to wipe your bed rails in front of people.”

But Rexford said she’s heard of cases in which patients, often women, who spoke up were told they needed psychiatric attention. Her advice: If you’re kind and pleasant, no matter what you say, there’s a good chance you’ll be heard.

And Shapiro said asking about hand-washing is part of changing the culture in hospitals. A decade ago, if a patient asked whether a doctor or nurse had washed their hands, the answer would be “of course,” even though less than 10 percent were likely to have done so. But people kept asking, he said, and the rates have gone up — though they’re still far from 100 percent.

Don’t assume

In its 1999 report “To Err is Human,” the Institute of Medicine projected that between 44,000 and 98,000 people in the U.S. die each year because of medical errors. The lower estimate represents more deaths than motor vehicle accidents, breast cancer and AIDS, the report noted.

A 0.1 percent error rate — far lower than the error rate in medicine — would be the equivalent of two unsafe landings a day at Chicago’s O’Hare International Airport, Haskell said.

Major causes of errors include communication problems, fatigue and changes in personnel when shifts change or patients are transferred.

If you’re in the hospital and transferred, repeat all the essential information — what’s wrong with you, what you need, if you have a do not resuscitate order and what it says — to the new staff, Haskell said. If you’re on oxygen or another device that requires electricity, make sure it gets plugged in after you’re moved.

“You cannot assume that anyone has actually read your entire record or knows your medical history or understands your medication history,” Rexford said. “Do not assume.”

Changing culture

Veltri and Ellner said some of the problems are related to the way the health care system is structured, reimbursing providers for the number of patients they see or procedures they perform, not for how well they do them.

“We get paid for good care, we get paid for bad care,” Ellner said.

But they noted that changes are taking place that could help reduce errors. Medicare has stopped paying for so-called “never events” like surgery done on the wrong body part; Medicaid in Connecticut followed suit, and private insurers are doing so, too.

Veltri noted that there is an increasing focus — including through new payment models — on coordinating services so one doctor doesn’t prescribe a drug that interacts badly with a drug prescribed by another doctor. Some payment models, known as global payments and accountable care organizations, are aimed at paying for health care providers to manage patients’ health, rather than paying for each procedure or test done when the person gets sick. Ultimately, Ellner said, “reimbursement is going to be tied to quality.”