Nothing About Me Without Me

An electronic medical record example
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Donald Berwick, recent Administrator of the Centers for Medicare and Medicaid Services, and past President of the Institute for Healthcare Improvement, has some opinions on patient-centered care. One of his maxims for patient-centered care is: nothing about me without me—addressing transparency and patient participation in care. In one of his speeches, “Escape Fire: Lessons for the Future of Health Care” (Commonwealth Fund, 2002), he rails against the difficulties patients have in having access to their own medical information.

Isn’t it ironic that giving patients access to their own medical charts is considered a radical idea? So radical in fact that the Robert Wood Johnson Foundation—that pioneering, cutting edge organization—is funding research on the feasibility and effectiveness of giving patients access to their own medical records. A one-year pilot project called “OpenNotes” was conducted at three hospitals: Harborview Medical Center in Seattle, Beth Israel Deaconess Medical Center in Boston, and the Geisinger Health system in Pennsylvania. Results from the baseline survey data were reported in the Annals of Internal Medicine (12-20-11). Not surprisingly, patients were overwhelmingly (>90%) supportive of the idea of having access to their doctor’s medical notes, saying it would help them remember important health information. In contrast, the majority of the 173 doctors completing baseline surveys expressed reservations over the OpenNote idea. The doctor’s concerns included: 1) worrying/confusing patients with medical chart information, 2) doctors would be less candid in what they charted about patients, 3) it would take up more of their time in having to answer patient questions raised by access to their charts, 4) it could increase the number of lawsuits, and, 5) personal medical information could end up on Facebook.  The yearlong pilot has ended and OpenNote researchers are now analyzing data to see how patients and doctors who participated in the project felt about it. They are also evaluating how often patients accessed their medical charts, how often they shared them with family/other providers, and how often they corrected errors the doctors had made in the charts.

As Carol Ostrom points out in her recent article on the OpenNote project, doctors may need to change some of their charting habits in terms of labeling patients. (“Patients eager to see doctor’s notes; physicians, not so much” Seattle Times, 12-25-11). She includes calling patients SOBs and charting on their BS (bowel signs). I’m not sure I’ve ever read a medical chart where someone called a patient a SOB, but I last worked in a clinic that had ‘slovenly’ as a standard term in a menu for describing patients. My colleagues and I had a debate, with some saying slovenly was a perfectly acceptable term for patients—similar to unkempt or disheveled. I maintained it was much more insulting because it implied a slur on moral character as well as physical appearance. And then there’s the still used FLK (funny looking kid) in pediatrics, used for describing a baby or toddler ‘just doesn’t look quite right and might have a genetic or other disorder but who hasn’t been diagnosed yet.’ Supposedly some pediatricians have been known to use FLP (funny looking parent) in children’s charts—I suppose by way of saying the FLK is genetic in a FLF (funny looking family) sort of way. I don’t think these terms would go over well in OpenNote.

To Err is Human: Medical Errors and the Consequences for Nurses

The Neonatal Intensive Care Unit.
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That medical care can be harmful to your health or even deadly, is not necessarily news to many people. The extent of it within the US health care system and the impact of it on health care providers are not well known. The IOM Report To Err Is Human: Building a Safer Health System (2000) highlighted serious patient safety issues in our health care system and outlines approaches to patient safety improvement. This report emphasized that the vast majority of adverse patient events were the direct result of bad systems and not of bad health care providers. “The focus must shift from blaming individuals for past errors to a focus on preventing future errors by designing safety into the system.” They pointed to the aviation industry as a model for safety design at the systems level. Root cause analysis was applied to understand and try to prevent adverse events. “Never events” were identified as sentinel patient safety events for monitoring purposes in hospitals (these include surgical removal of the wrong body part and inpatient suicides). National level patient safety monitoring databases were developed. Eleven years later where are we in terms of progress on patient safety?

In the April edition of the journal Health Affairs, indications are that we have not improved much and may actually have worsened. A study by Classen, et al reveals that serious preventable adverse events occur in one out of every three hospital admissions. Another study estimates a $17.1 billion annual cost of measurable medical errors in the US.  They point out that the risk of harmful errors in health care in the US is increasing due to the increasing complexity of care and of medical devices and medications. What to do about this? The Agency for Healthcare Research and Quality is putting an emphasis on educating patients on ways to advocate for their own patient safety (or parents of pediatric patients). But as Donald Berwick points out in the April 15th Health Affairs Health Policy Brief on improving quality and safety, “Commercial air travel didn’t get safer by exhorting pilots to please not crash. It got safer by designing planes and air travel systems that support pilots and others to succeed in a very, very complex environment. We can do that in healthcare, too.”

I have been thinking about the issue of patient safety and the consequences for nurses because of the recent news of the suicide of a respected local RN, Kimberly Hiatt. She died April 3rd at the age of 50. She had worked as a NICU nurse at Seattle Children’s Hospital for almost the past thirty years. I did not know her personally, but by all accounts she was a devoted and highly capable and compassionate nurse. In fact, Megan Moreno, a pediatrician who did her fellowship at Seattle Children’s Hospital and whose daughter Fiona died in the NICU of congenital health problems describes Kimberly Hiatt in an article published in the Archives of Pediatric and Adolescent Medicine (January 2006). She writes, “Our favorite nurse was assigned to us the next day, and she helped us through the difficult task of extubating Fiona.” At the end of the article she expresses particular gratitude to Kim Hiatt, RN, along with her neonatologist.

Kimberly Hiatt committed suicide because of a cascade of adverse events that happened to her in the aftermath of a medication error that resulted in an infant’s death in the NICU at Children’s. This happened in September, 2010 just months after a highly publicized death of a 15 year old autistic boy after routine dental surgery at Children’s, which resulted from an incorrect dose of a Fentanyl patch (a powerful narcotic) prescribed by the dentist. Children’s Hospital changed its policies on the prescribing of narcotics after this incident, but the dentist was not disciplined. Around the same time, an ER doctor at Children’s incorrectly administered a drug to a critically ill patient by IV instead of by an injection in the muscle, and the patient had to be transferred to another hospital because of the complications. The physician was not disciplined.

In contrast, Kimberly Hiatt was fired soon after the infant’s death. Also soon after the infant’s death, Children’s Hospital changed its policies to require stricter control and checks on the administration of the specific medication, calcium chloride, which is considered an especially dangerous drug  in medically fragile infants.  Dr. Hanson, the Medical Director of Children’s Hospital said that it was important that all staff feel safe to report mistakes. The Washington State Nursing Commission put restrictions on her nursing license with a four-year probationary period; with these restrictions no one would hire her to work as a nurse. According to a Seattle Times article (4-20-11), many hundreds of former patients and their family members, as well as nursing colleagues attended her funeral. In the Seattle Times Editorial and Opinion pages today, F. Norman Hamilton, a retired anesthesiologist writes, “The fact that the hospital changed its policies after the death implies that they realized that its policies were inadequate. Despite this, the hospital decided to fire the nurse for an arithmetic error. (…) If we fire every person in medicine who makes an error, we will soon have no providers. (…) It is my belief that if the nurse had been dealt with appropriately—with compassion and insight—that she, today, would be a valuable and happy nurse.”

So I am left with many questions. Why was the nurse treated so differently from the   dentist or physician at the same hospital for similarly serious medication errors? If one in three hospital patients in the US experiences serious preventable adverse events and we know that it’s “the system, stupid,” why are most of our efforts put into educating patients to advocate for safer care? If nurses are simultaneously being told by hospital administrators to report errors and then facing serious retribution for making honest unintentional mistakes—and usually due to unsafe staffing levels they have no control over—what do I teach my students to do? If the suicide of a hospital patient is considered a sentinel “never event,” shouldn’t the suicide of a nurse such as Kimberly Hiatt due to systems errors be considered a “never event?”

Nursing and the Trojan horse for quackery

Detail from The Procession of the Trojan Horse...
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I watched Dr. Donald Berwick‘s keynote speech at yesterday’s National Summit on Advancing Health Through Nursing (webcast available at http://www.thefutureofnursing.org/summitwebast). Dr. Berwick, of course, is a pediatrician, a leader in quality-improvement efforts in health care, and since July the head of the Center for Medicare and Medicaid Services (an Obama recess appointment–Republicans in Congress vowed to block Berwick’s appointment).

First a few random observations from watching the live webcast: 1) power-suits for women plus bright scarves seem alive and well for the nursing leaders there, 2) it is never a good idea to get filmed texting when you are an audience member at a national event like this…

A disclosure is that I have been a big fan of Berwick’s ever since he gave a (similar) keynote speech about ten years ago at a pediatric quality improvement conference I attended in San Diego. It wasn’t just the sun in San Diego that made me like him. I have a well-used copy of his 2002 Commonwealth Fund Report “Escape Fire: Lesson for the Future of Health Care.” My copy is dog-eared, tagged, and highlighted in many places. I use his writing for my health policy courses, but also as a practice morale-booster when I am doing head-banging (see previous post) in frustrating primary care. To paraphrase him from “Escape Fire” he says that we must face the reality that our US health care system is not working–that tinkering with it will not make it work–that we need a new system–and that we need to have the courage to address these problems head on “..without either marginalizing the truth-teller or demoralizing the good people working in these bad systems.”

Kimball Atwood IV, MD is an physician-editor with the blog “Science-based Medicine” (www.sciencebasedmedicine.org). He says he became interested in pseudoscience after he attended a nursing conference at his own hospital where they discussed therapeutic touch. (I have a healthy dose of skepticism on therapeutic touch as well).  In a recent blog post “New CMS Chief Donald Berwick: A Trojan Horse for Quackery?” Dr. Atwood expresses his dislike of Dr. Berwick–mainly because Dr. Berwick is a self-proclaimed “Patient-centeredness extremist.” But Atwood also claims that Dr. Berwick is a Trojan horse for quackery now at the federal level, based on the fact that Berwick shared the podium with Dean Ornish and Senator Tom Harkin at the IOM Summit on Integrative Medicine.”  So, does the fact that Berwick was the keynote speaker for the IOM nursing summit–and that he even spoke of “the majesty of nursing” (really a Hallmark moment I could have done without)–mean that he is a Trojan horse for quackery and nursing is part of that quackery?