Justin's HOPE healthcare tumblelog

I was recently interviewed by Barbara Olson, writer for Medscape, who has a wonderful way of summing healthcare issues up into an understandable, common sense depiction of reality. Thank you for including me and my safety net! You will also meet “e-Patient Dave” and hear about his revolutionary work in IT and patient involvement. (click on title to read entire article, reg req)

Below is an excerpt of my involvement in the reality of it all and the evolution of new accepted ideas and concepts in care. Barb concludes with: “That’s not just ‘good medicine.’ That’s patient safety.”

Justin’s HOPE

Dale Ann Micalizzi’s work with Justin’s Hope, a nonprofit foundation that promotes pediatric safety and disclosure following adverse events, is another example of how consumers contribute to patient safety. Dale Ann’s interest and expertise in patient safety stem from the tragic death of her young son. Patient involvement at this level takes on new meaning because Dale Ann and others like her are undisputed experts about what it means to survive the unthinkable. Dale Ann’s contributions have propelled initiatives that will not only change the incidence of adverse events, but also the way that people who experience them are cared for.

Justin died in 2001 after what was expected to be a short operative procedure to treat a septic ankle. Even today, details about what went awry remain undocumented and undisclosed, and the cause of Justin’s death remains unknown to the Micalizzi family. (Additional details about Justin and the Micalizzis’ quest for answers can be found in Dale Ann’s account.

I asked Dale Ann, who is often invited to share her story about loss and how loss deepens in the absence of disclosure and apology, how she is received by professional audiences. “Better now,” came the cautious reply, “but early on, I wasn’t received well at all. In fact, I once gave a presentation at a conference and was staying in the hotel where the conference was held. That night, as I walked across the lobby, someone in a darkened hotel bar called out, from a place I couldn’t see, ‘We don’t want you here.’ It’s still like that sometimes. Justin’s story makes people uncomfortable. I remind them of things they don’t want to think about.”

Despite the voices of the anonymous few who remain comfortable in the dark, Dale Ann regularly lends support to healthcare professionals and other consumer advocates to advance patient safety. She has cast a wide net to identify conditions and circumstances that may have played a role in Justin’s case, advocating for system-level solutions wherever broken processes are identified. Dale serves on the Executive Board of Directors for the Malignant Hyperthermia Association of the United States, representing pediatric anesthesia patient safety and the patient/family perspective. In addition, Justin’s HOPE sponsors the Justin Micalizzi Memorial Institute for Healthcare Improvement Scholarship, a $5000 conference scholarship, awarded each year to healthcare professionals committed to serving vulnerable pediatric populations globally.

Long-time patient safety researcher and Institute for Healthcare Improvement (IHI) President Donald Berwick, MD, shared Justin’s story during his keynote address at IHI’s 2005 conference. Berwick, who has long advocated for the experiences of patients and families to be fundamental determinants of quality,^[12]recently described patient-centeredness as “a dimension of healthcare quality in its own right, not just because of its connection with other desired aims, like safety and effectiveness.”^[13]He sees a shift in control and power — from those who give care to those who receive it — as a necessary step in attaining highest quality healthcare while acknowledging that a paradigm shift of this magnitude will be perceived as both unfamiliar and necessarily disruptive.^[13]

“…Up until this point, the Joint Commission has focused primarily on identifying the highest priority safety and quality problems. “We put them in front of health care organizations and say, ‘You have to work on this,’ ” Dr. Chassin said. “But what the Joint Commission has not done until now is work with organizations to develop interventions that show them how to solve the problem, how they can aspire to the highest possible levels of excellence….”

A must see presentation on patient safety!

Dr. Homer writes a wonderful article on the improvements made and the improvements needed in pediatric healthcare. Great site at NICHQ National Initiative for Children’s Healthcare Quality  http://www.nichq.org/ or follow him on twitter @NICHQ (click on title for link to referenced article)

“…Health practitioners can find it difficult to apologise to patients following an adverse event, but a health lawyer says it can often be crucial step to take.

Speaking before a Royal New Zealand College of General Practitioner conference in Wellington, Marie Bismark says an apology could restore trust to the practitioner-patient relationship….” (click title link to read article)

Thank you so much to Barbara Olson (aka SafetyNurse) for writing this and for her wonderfully kind interviews and passion for patient safety. I found it kind of ironic that the Modern Healthcare piece would be published on Labor day. A labor of love… is so fitting.

…Thornburgh and Pichert believe the questionnaire’s responses are a strong indication that a significant problem remains in healthcare settings. For example, some of those who participated gave these examples of their anger and frustration with their interactions with superiors or peers:

• “A physician wanted to do something that put the patient in an unsafe situation, violated State and Federal laws and regulations and JCAHO standards. When I informed the physician he couldn’t do this, and that he put patients at risk, he told me I couldn’t do that and he would have me fired…The physician was yelling and using many expletives.”
• “I have been targeted by a physician that exhibits unprofessional behavior on a regular basis. He yells, throws charts and degrades nurses always looking for something wrong and someone to blame. He has told patients not to listen to the nurses; they don’t know what they are talking about. His behavior is not addressed—he is one of our biggest admitters.”

Those initiating such behavior most often were nurses, physicians, managers or administrators, according to the survey results…

Dr. Abraham Verghese, MD writes: But this is exactly the moment when a physician can be of great value by helping the family and the patient come to terms with illness and death; it is the moment we can promise to be with them through thick and thin, to blunt pain, to reduce suffering and anxiety. There is only one ending to all our stories — and part of the art of medicine is helping patients and families find their way through a full healthy life to a peaceful end….

By Laura Landro

…”Sorry alone doesn’t work unless we learn from our mistakes,” says Timothy McDonald, a pediatric anesthesiologist and chief safety officer at the University of Illinois Medical Center in Chicago. “We have to also make promises that this won’t happen again and get patients and families engaged in the effort to improve our performance.”…