A Patient Family Advisory Council’s reduction of waiting room anxiety: I think about who’s coming after me

Mal’s story on the Patient/Family Advisory Council:

I’m the Co-Chair of a Patient/Family Advisory Council (PFAC) at Beth Israel Deaconess Medical Center in Boston.  

Several of us on the PFAC who’d been through the surgical experience at BI, in the waiting room as a patient and as a family member, found it was not a very comforting or personal experience, but was rather stressful.  One of our projects was making that experience less stressful for the loved ones waiting.  A doctor and an I.T. [Information Technology] staff member came to the PFAC and asked for our input.  Several of us shared how impersonal it was.  It was an open area, at the main entrance to the hospital.  It created extra stress with all the people coming and going constantly.  

Now there’s a new waiting area that was created, away from the main entrance, that also has a newer technology of communicating to people where their family member is in terms of the surgical process.  It’s an electronic board, so I can see, for example, my spouse is in Surgery, or, they’re in Recovery.  They give each patient a special code on the screen, so it’s HIPAA compliant [to protect privacy].  And there’s an actual person to talk to when they want to check in and a person who knows the information about their family member.   

  

In my volunteer work on the Boards of nonprofit organizations, when I feel strongly about something, I jump into it.  I got really great care at the hospital, and I also saw room for improvement.  I think about who’s coming after me.

Read another story about a Patient/Family Advisory Council.

Global payment and fee for service: They've been to the mountaintop

As a 13-year-old Jewish boy in April 1970, I read aloud and lectured to the congregation on the biblical rules telling the priests, who served as doctors, how to diagnose leprosy and other skin problems, in Chapter 13 of Leviticus. In ancient times, the Levites served as teachers, doctors, and medical assistants. They'd been chosen for those roles because of the good judgment, loyalty, and mettle they'd shown in times of hardship.

Nowadays, our best teachers and healthcare professionals are often secular. Paul Levy, for one, may or not genuinely be a Levite. And he certainly doesn't spout much dogma. He has certainly been tested; the job of a hospital president may be the most complex job. And Beth Israel Deaconess Medical Center, where he played a starring role, is an excellent place for a patient visit or inpatient stay - but it's tough on its presidents.

Paul will speak on Thursday, April 12 in Boston about his politically incorrect views on global payment. Some of his earlier thoughts on global payment have clashed with current dogma. The talk will be part of a conference on payment reform, organized by the Massachusetts Health Data Consortium. Joining Paul will be the deliciously tart Dolores Mitchell (on a later panel on cost control), fellow contrarian and CEO Charlie Baker, and other insightful speakers who've been to the mountaintop, so it should be very thought-provoking.

Sharing doctors’ Open Notes with patients

Jan Walker and her colleagues just published an article about patients' and doctors' attitudes toward sharing doctors' appointment progress notes with patients. In an interview, she described some of the most interesting findings:

We ran the Open Notes experiment at three sites, in urban/suburban Boston, rural Pennsylvania, and inner-city Seattle over 12 months, through this summer. The published article discusses the results of surveys, before the experiment began, of both the doctors and patients about the idea of open notes. According to these findings, patient expect that reading notes will help them understand their health and conditions better. The team also surveyed patients and doctors after the 12 month period, to find out what actually happened, and hopes to publish those findings in spring/summer 2012.

So, results are pending, but the researchers have heard some stories along the way of impacts of sharing notes, and are sometimes catching things. Early on, there was a doctor who called to mention his first experience with Open Notes, saying that at an appointment with a patient, he’d mentioned a test, but had forgotten to order it. The patient read Open Notes and told the doctor the test hadn’t been ordered, and asked that it be ordered. As another example, we had a patient who went home after her appointment and thought, I remember the doctor said three things, but I forgot one of them. So she read the note, in which the doctor advised that she should check out a spot on her skin. So she had a Dermatology appointment, which was a good thing, as it turned out that the spot DID need medical attention.

So things that were missed may be picked up earlier. One doctor, who’d been dragged somewhat reluctantly into this project, said, “a few months in, I felt safer because there are more eyes”; medical care is so complicated, that the extra set of eyes really helps. We had approval to run the experiment for 12 months. At the end of the study, we notified the doctors that the official study period was ended and that they could certainly drop out and we would turn it off. Not one doctor asked to have Open Notes turned off.

This could create more trust between doctors and patients, by opening the black box, and making all this less mysterious than patients may have thought. Some patients, we learned to our surprise in the focus groups, don’t realize that doctors write notes about the visit. Patients don’t all know they have a legal right to their medical records, in the Federal HIPAA law.

We thought that the younger, more tech savvy, better educated patients would be very interested in the doctor’s notes, but not necessarily older, less savvy or educated patients. But across the board, everybody is interested. That really surprised us.

Jan’s advice: Even if your doctor doesn’t use an electronic medical record, ask to get a copy of the doctor’s note about your visit.

The article appeared in the Dec. 20 issue of Annals of Internal Medicine. Thanks to Jemma Weymouth and Morgan Warners of Burness Communications for connecting me with Jan.

Read another article on a provider that gives even their woofing patients access to their progress notes.

Think Olive Garden: Innovative Patient/Family Advisory Councils

The CEO of Beth Israel Deaconess Medical Center recently had the pleasure of touting a major national award for patient satisfaction won by their NICU (neonatal intensive care unit): the Family-Centered Care Award, by the Society for Critical Care Medicine. I hope to describe their advisory council's role in that in a future blog post. In an earlier post on the role of the Advisory Council for the adult ICU, Paul Levy described their use of Family Pagers:

Our Advisory Council pointed out the feeling that they had to stay in or near the ICU at all times, in case anything happened. We now provide pagers (think Olive Garden) to families that allow them to go to the coffee shop, cafeteria, and nearby shops with the confidence that we can page them if they are needed. These have received rave reviews from families, nurses, and doctors alike.

Massachusetts General Hospital has been using several patient/family councils. One helped develop a "pathway for cardiac services" that portrays the steps in a patient's treatment, so patients will know what will happen during their hospital stay. I hope to describe this in more detail in a future blog post.

At Cooley Dickinson, the annual report in 2009 on the PFAC told of another committee involving consumers that performed "a SNF [skilled nursing facility, i.e., nursing home] hand-off communication survey, which resulted in an immediate improvement in patient and post-acute provider relationships through the discharge process."

BRAVO TO THESE PIONEERING HOSPITALS!

Advice to patient advocates: Tell your families and clients to get their care at hospitals like these that actively listen and heed the patient's voice.

Read another story about innovative patient/family advisory councils.

Intervening before there’s drama: Rapid Response Teams

"A trigger [for a rapid response team] is not about excitement and drama; it's about intervening before there's drama," said Jeanne Quinn, a senior nurse on a unit for post-surgery and trauma patients. Minutes earlier, Judy Wagoner, a 29-year-old nurse with 2.5 years experience, had activated a trigger when her patient's blood pressure plunged to 56.

As the senior nurse on the floor, Jeanne responded and helped Judy gradually raise Carol Emerson's pressure back into the 100s. The team ordered an electrocardiogram to rule out underlying heart problems and a blood transfusion, and kept the patient an extra night. About 80% of the nurses on the floor have less than two years of experience, while Jeanne has 15.

No one knows for sure if early intervention helped Carol, who was in the hospital so surgeons could repair broken bones in her left arm, avoid cardiac arrest. And Judy said she would have asked for Jeanne's help even before the new rules.

But doctors believe the key to reducing patient mortality is to intervene at the first sign of trouble, before the patient "[cardiac] arrests," an emergency where the heart or lungs — or both— shut down.

Dr. Michael Howell, an intensive care specialist, hopes the Rapid Response team will prevent delays like one he described a few years ago to the Beth Israel Deaconess board of directors: Doctors admitted an elderly man to the hospital for gastric bleeding. When his systolic blood pressure dipped into the 80s, his nurse and an intern gave him intravenous fluids to push it back up to normal range. His pressure climbed back into normal range. Over the next eight hours, his blood pressure kept falling, and they kept pumping in fluids. Low blood pressure is generally not life threatening until it dips into the 70s or 60s. But they failed to recognize that the subtler decline masked a more serious underlying problem: massive stomach bleeding. The next morning, a senior doctor did, and transferred the patient to the ICU, which has the staffing expertise and equipment to intervene more rapidly. But it was too late.

"I don't know that we would have saved him," Dr. Howell said. "But it's absolutely possible."

Advice to family members of hospitalized patients: Find out how the hospital activates a rapid response team.

Read about Massachusetts legislation enabling family members to activate rapid response methods in hospitals.

Thanks to Liz Kowalczyk for the source story in the Boston Globe of Nov. 27, 2005.

She has taken off her name tag: Hand-washing in hospitals

The WBUR radio station played a story this morning about hospitals' efforts to encourage staff to wash their hands frequently, to prevent hospital acquired infections.

At one Harvard teaching hospital, a nurse observes staff on the Cardiac unit to see who is washing their hands and when. What makes the nurse sure that they won't know they're being watched? Oh, she has taken off her name tag - but still wears the standard blue nurse's uniform and white coat. For ten minutes, she notes who washes their hands. Meanwhile, the Cardiac unit nurses hurry around the unit, probably aware of the one nurse, not from their unit, who isn't hustling around. Surprise! –everyone dutifully uses the hand sanitizer while she watches them. Does this spot-checking really raise compliance with hand-washing rules? Or does it just provide a reassuringly high rate of hand-washing?

A more reliable approach uses unobtrusive measures. Indeed, that ("Unobtrusive Measures") was the title of a book by Eugene Webb et al, written back in 1966. Such unobtrusive or “non-reactive” measures probably give a more honest view. At Beth Israel Deaconess Medical Center in Boston, for example, staff instead measure the volume of hand sanitizer used.

Advice to patient advocates: Bring a bottle of your own hand sanitizer, and keep it on the patient's bedside table as a gentle reminder.

Read another story on blue uniforms and hospital cleanliness.

Thanks to Sacha Pfeiffer for the source story on WBUR today.

Not just a job: A compassionate nurse

Karen Becker's Nomination Letter:
Gail Benedetti was my nurse in the days and nights immediately following my Whipple procedure (a complex gastrointestinal procedure). After more than 7 hours of surgery, I was in no shape to advocate or care for myself. The surgeon may have saved my life but my nurse made it bearable.

Gail did everything for me, from painlessly removing my nasal-gastric tube to gently giving me a sponge bath. I wasn't her only patient but she made me feel that I was. When I woke up, she was there. When I went to sleep, she was there. Bells and lights went off. Tubes and bags needed changing. Gail was there to make it right. It was uncanny. I didn’t have to worry. My nurse was looking out for me. Because Gail took the time to explain each procedure, medication, and piece of equipment to me, I knew what to expect. That shared information was both comforting and empowering to me as a patient. When pain was an issue, Gail made it her priority to advocate for me. She truly was my angel of mercy. The memory of her unflagging compassion and competence still brings tears to my eyes. I will be forever in her debt.

During my eight days on the ninth floor the Farr Building at BIDMC, I saw Gail interact with other patients, nurses, and the medical staff. She was energetic, engaged, and empathetic at all times. Gail was equally respectful and responsive to the needs and requests of everyone, patients as well as physicians. Gail proves that nursing is not just a job but a calling.

Advice: If your nurse isn't compassionate, politely ask the Nurse Manager or patient care advocate for a replacement.

Read another compassionate nurse story.

Thanks for the source article in the Sixth Annual Boston Globe "Salute to Nurses" advertising supplement in the May 4 issue.

Wrong drug, wrong patient, or just wrong?: Roger Clemens' claims of Vitamin B12 and Lidocaine use

The only people who legitimately might need vitamin B12 injections would be those with diagnoses of pernicious anemia, according to Dr. George Blackburn, Director of the Center for the Study of Nutrition Medicine at Beth Israel Deaconess Medical Center in Boston. It’s "virtually impossible" to get pernicious anemia in America nowadays, because of our ready access to fish, eggs, and dairy products

The New York Yankees baseball pitcher Roger Clemens has claimed that the injections that he received in his buttocks contained B12, and Lidocaine. "I don't why you would inject Lidocaine deep into this muscle," said Dr. Gary Wadler, a spokesman for the American College of Sports Medicine and a member of the World Anti-Doping Agency. In general, pain-killers like Lidocaine are used specifically to block nerves, and therefore pain, in a specific part of the body, such as teeth during dental procedures, or around aching joints, and are not properly used as Clemens claims.

It's more likely that Clemens is using these claims as a sneaky way of masking his illicit steroid use. If he used B12 and Lidocaine in these ways, they were the wrong drugs, for the wrong patient.

Advice: Think of yourself as a role model when you choose drugs.


Browse for related stories in the index at the very bottom of this page, or read a story about a former Yankees pitcher.

Thanks to Judy Foreman for the source article in today's Boston Globe.

From Tragedy to Safer Care: A stillborn baby

Seven years ago, a series of errors befell Mrs. W. while she was an obstetric patient at Beth Israel Deaconess Medical Center in Boston, and her 9-month old fetus was stillborn. Mrs. W. herself needed a hysterectomy, and 18 days of subsequent hospitalization in the intensive care unit.

According to the Chief of Obstetrics in the Journal of the American Medical Association article, staff made several errors in her care. After she started labor, doctors discharged Mrs. W. back home, though her blood pressure should have led doctors to keep her in the hospital. When she was re-admitted at midnight, a few hours later, doctors did not consider that preeclampsia could be involved. Doctors ordered lab tests, but the tests were never sent, due to miscommunication. When the fetus' heart rate exhibited a worrisome "non-reassuring" pattern of "late decelerations," a C-section should have been promptly performed at 5:30 am.

Several factors contributed to the errors. The attending physician had been on call for 21 hours, and fatigue may have led the doctor to stick to a diagnosis despite evidence to the contrary. There were an unusually high number of women giving birth there at that time. Residents were afraid to speak up to the more senior doctors. At age 38, Mrs. W was relatively old for a first-time birth. The hospital had been experiencing severe financial difficulties, which might have affected nurse staffing levels. The crisis occurred in the early morning. Mrs. W. did not know about the drug used to induce her labor.

In the words of Mrs. W's husband, "That night, I saw residents who were afraid. They were either unable or unwilling to get the doctor, when clearly things weren’t going the right way."

As a result of the multiple tragic errors in her care, doctors and other staff aggressively have since acted to safeguard their system of care to prevent similar errors. Indeed, they were able to reduce errors by about 25%.

This improvement led the Joint Commission on Accreditation of Healthcare Organizations (JCAHO) to honor the hospital last week with the John M. Eisenberg Patient Safety and Quality Award.

I hope the improvement will be permanent. Two factors, however, will make this doubtful. First, hospital policy continues to have attending physicians on call for 24-hour shifts, despite the Chief's clear attribution of overwork and fatigue as significant contributing factors. Second, the Chief is leaving the hospital, and it is unclear whether his successor will as strongly advocate team communication ("crew resource management," from the aviation industry).

Dr. Sachs' advice to patients and their spouses, patient advocates: Ask the attending physician, "What's going on, and what are the plans?"


Read one of our stories by a pilot who is expert in crew resource management, or read more from the discussion among doctors in the August 17, 2005 issue of the Journal of the American Medical Association.

A tool for patients and advocates: Hospital error rates

A new publicly available resource shows individual hospitals’ quality ratings, so you can identify the best hospital near you. The U.S. Centers for Medicare and Medicaid Services gathers the information from hospitals across the country and posts it here. The database shows graphs on the treatment of patients with heart conditions and pneumonia, and those undergoing surgery.

Advice: When it’s not raining the roof doesn’t leak, and when it’s raining, it’s too late to go and fix the roof. That’s especially true for personal health issues. That’s why you should take a few minutes now, and pick out the best hospital nearby. That way, in an emergency, you’ll know where to go.

Public Policy Minute: Hopefully, the public availability of quality measures will stimulate hospital leaders to compete on quality. Paul Levy, the head of Beth Israel Deaconess Medical Center in Boston, hopes so, and has posted many measures on a new BIDMC web site. Beth Israel shows up among the top hospitals on all but three of the 21 measures that can be viewed on the CMS database, among its 12 neighboring hospitals. Bravo, Paul!


Not all quality contests are as fair and accurate as CMS’. Read a story of a medical error by a physician who won an award that was not carefully made, or read Paul Levy’s blog post on the public posting of BIDMC’s quality measures.