The Unexpected Journey Continues

by Armando Nahum, Director, MIQS Center for Engaging Patients as Partners

It’s 2006 and another Labor Day Weekend is upon us. As preparations are under way for a gathering of family and friends, the phone rings…

Our son Joshua, an avid skydiver instructor living in Colorado, has just had an accident. A cold air density pushed his parachute inward and threw him to the ground at 60 miles per hour. Joshua is being taken to the Emergency Department and I’m scrambling for any airline to get me on the next flight to Denver. I manage to find a ticket, and arrive Denver in the early evening hours. Joshua is in ICU with a broken left femur and a contusion on the back of his head. I immediately saw a tube on the top of his head and asked what it was. They told me they had to perform a ventriculostomy, a temporary drainage to reduce the swelling in Joshua’s brain.

I sat there and watched my son go in and out of sleep, a result of the heavy sedation medication he had been given. I noticed the room was dark, no windows and bits and pieces of paper on the floor. I didn’t think much of it back then…I just wanted my son out of ICU. My understanding of hospitals at that time was quite limited: you go through the ED after an accident, then they move you to the ICU and if you get better you go to a “regular” room that means you get to go home soon.

But that was not the case with Joshua. He spent six weeks in ICU, battled two cases of MRSA and delirium, and finally he seemed to be on a good road to recovery. His neurosurgeon told us Joshua was “good to go”. They found a Rehab Facility a couple of miles down the road where Joshua had some work left to do. I was so happy to hear that, finally, our nightmare would end.

Six days into Joshua’s rehab, I received a call at 11:30pm from his neurosurgeon. He said that Joshua spiked a fever of 103F, his brain was swelling and he coded. He said he performed a lumbar puncture to determine if an infection was present. Little did he know that in doing so, he would end up “sucking” part of Joshua’s brain into his spinal column, damaging C1 to C3 leaving him unable to breathe on his own. He was on a ventilator to breathe for him while the neurosurgeon figured out the extent of this new insult to his spine–not from crashing 60mph into the ground, but sustained during care by his doctor. I was in shock by the news, a phone call that reported the opposite of what we had last been told, deflating our expectations of recovery. I also remember so many of the details the neurosurgeon shared meant absolutely nothing to me at the time. I only had one question for him: “Are you confident you can handle my son?” And he answered: “Absolutely!”

I took the next flight to Denver and upon arriving there I found that Joshua had been transported to another hospital. His neurosurgeon was no longer available. He decided to “wash his hands” as Pontius Pilate did, Joshua no longer his concern. Within a few days the damage caused to Joshua’s spinal column became clear: my son was now a ventilator-dependent quadriplegic with a gram-negative bacteria in his cerebral spinal fluid baffling everyone at that hospital. The bacteria that had been cultured were still unable to be stopped by any antibiotic available anywhere in the world. Joshua died a few days later, but not from his original injuries. My son ultimately died unnecessarily from an infection he caught during his hospital stay.

Joshua acquired his infection from the first hospital that cared for him, and 11 years later they still hide. They still deny and “fudged” his death certificate to where Reuters decided to investigate and discovered lies from various hospitals. Article cited here: https://www.reuters.com/investigates/special-report/usa-uncounted-surveillance/

And so, after the death of my son, my personal search to find out how this could happen transformed me into a man on fire; a man with a mission and an unquenchable passion to discover how to stop these largely preventable infections from happening to anyone else ever again. As irony would have it, or maybe because I was now awake and looking, we soon discovered that a total of 3 members of our family had been impacted with hospital Infections in 3 different hospitals, in 3 different states in only 10 months’ time…

Someone once said that, in life, even more than education, experience is sometimes the best teacher. I can tell you with all certainty, that there no one has been taught more or has been more profoundly affected by the personal devastation and particular loss caused by hospital acquired infections than my own family.

With the help of the CDC, my wife Victoria and I decided to establish an organization dedicated on Infection Prevention (Safe Care Campaign) and arranged to meet with hospitals throughout United States and Canada; to tell our story and empower the caregivers to do the “right thing” for every single patient. The CDC taught us that the component of most importance to prevent infection during the delivery of care was something so simple: Hand Hygiene.

We soon realized that it would take us many years to visit thousands and thousands of hospitals, and fortunately, a new “movement” was starting. A movement that would allow the Patient and Family Members’ voices to be heard. We jumped at the very first opportunity and created a new organization that, if done right, would have our voices heard throughout the world. The Healthcare and Patient Partnership Institute (H2Pi.org) emerged from a partnership with two of the most renowned Patient Engagement experts: Marty Hatlie, JD and Tim McDonald, MD, JD.

Together, we built a “model” of partnership between Patients and Family Members and hospital staff that was based on Quality and Safety initiatives. We wanted to make sure it would be patient harm that would be our focus, not just patient experience—the paint color of walls, the noise level in patient rooms or parking efficiencies. We wanted to help health systems with quality and safety initiatives, like reducing hospital-acquired conditions (HACs), reducing hospital readmissions and supporting these aims across the continuum of care.

Our first client was MedStar Health, the largest not-for-profit healthcare system in the mid-Atlantic region. In just 2 short years, we established Patient and Family Advisory Councils for Quality and Safety (PFACQS®) in all of their 10 Hospitals. Today, MedStar Health, with the leadership of Dr. David Mayer, Vice President of Quality and Safety, is a leader in Patient and Family Engagement throughout the country. Since then we have worked diligently with Vizient Inc. (formerly VHA) in developing many Advisory Councils throughout the USA.

With the recent launch of MedStar Institute for Quality and Safety (MIQS), my unexpected journey has recently provided me with yet another opportunity. As the Director of Center for Engaging Patients as Partners at MIQS, I am honored to be part of an innovative, state of the art and forward-thinking Institution with an impeccable team devoted to supporting the MedStar Health Quality and Safety mission.

The Institute is home to the Center for Open, Honest Communication, the International Training Center for Bloodless Medicine and Surgery, the Center for Engaging Patients as Partners, the Academy for Emerging Leaders in Patient Safety, and an ever-evolving array of quality and safety research, education and training programs and clinical improvement programs. The MIQS Mission is shaped by the Quadruple Aim — Better Care, Better Health in Communities, Lower Costs, and Healthcare Workforce Support. Click here, to find out more about the work we are doing through MIQS.

Michelle Malizzo-Ballog: Never Forgotten

By Tim McDonald, MD, JD

A miraculous moment took place at 4 pm on the evening of April 25, 2012.

In the picture above, I am holding a watch in my right hand while standing next to Barb Malizzo at a recent CANDOR Event in Dana Point, CA. Barb was one three patient and family speakers who brought the patient voice into the room for the health system that had commissioned us to teach them the value of open, honest communication in healthcare. The watch is a symbol of the power that results from that open, honest, and effective communication with patients and families following patient harm.

Exactly four years earlier, on April 25, 2008 Michelle Malizzo-Ballog died in the Intensive Care Unit at the University of Illinois, where I worked as the Chief Safety and Risk Officer for Health Affairs with my friend and colleague, Dr. Dave Mayer. Michelle died as a result of a multitude of medical mistakes that resulted in our failure to rescue her. She suffered a respiratory and then cardiac arrest brought on sedative medications. Michelle died after several days of heroic measures in the ICU had failed to restore any neurologic function.

At the time of her death, we discovered the multitude of mistakes that occurred, and openly and honestly shared them with Michelle’s family. I found myself in the critical, yet important position of conveying all we knew, including the errors, to the family, and particularly to Barb and Bob Malizzo, Michelle’s parents. Their sadness and anger were palpable, yet their desire to maintain contact was clear and obvious. They did not want to be abandoned and, instead, remained open to an ongoing dialogue as we all struggled to make sense of this horrific catastrophe that changed so many lives forever. We promised to stay with them and not to abandon them.

We periodically stayed in contact by phone, and we eventually met in person for lunch in the spring of 2009, one year after Michelle had passed. At that time, we invited Bob and Barb and their youngest daughter, Krissy, to join the Medical Staff Review Board at the University of Illinois. This committee was charged with the review and development of solutions for serious safety events at the Hospital. Michelle’s family agreed to this appointment and joined as the “conscience of the community” – thereby meeting our ongoing promise to stay with them while they helped make sure what happened to Michelle did not happen to other people.

On April 25, 2012 – on the four year anniversary of Michelle’s death, Bob and Barb came to the Medical Staff Review Board meeting with 3 small packages – they handed one to me, one to our Director of Safety and Risk Management, Nikki Centomani, and one to Bonnie, the nurse who had so kindheartedly and tenderly care for Michelle in the ICU.

Bob and Barb explained that these presents had been given to us for the honesty, compassion, and empathy we had provided them from the time of Michelle’s initial cardiorespiratory arrest, up until this moment in 2012, four years later.

When we each opened our own package, we found, to our immense surprise, beautiful Movado watches with “Michelle Malizzo Ballog 4-25-08” inscribed on the back. At that moment I tearfully promised the Malizzos I would wear the watch at all patient safety presentations and workshops going forward – as a symbol of the trust and the love we have for each other – while never forgetting Michelle. This was a miraculous, powerfully healing moment for our care giving team, and I hope, for Barb and Bob as well.

Today, now more than 9 years after Michelle’s death I did a presentation about CANDOR at Connecticut Children’s Medical Center. I wore the watch. I remembered Michelle…