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:

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 ( 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.

Gaining Momentum to Improve Diagnosis in Medicine

By Chris Goeschel, ScD, MPA, MPS, RN

Earlier today Facebook reminded me of a memory from 2015. I am not a daily FB user, and I limit my posts to select, real friends, versus the “I know someone who knows you“ category social media tends to classify as “friends”. Ironic that the post referred to an Institute of Medicine (IOM) Panel on which I had served for 2 years, and the report that our committee released in September 2015 on “Improving Diagnosis in Health Care”. Two years ago an article discussing the findings and importance of our report appeared in the New York Times. My FB post included a link to the article.

Today, as I write this I am sitting on a plane headed to Boston for the 10th annual meeting of the Society to Improve Diagnosis in Medicine(SIDM). My mind drifts to the ways in which life has a way of merging events that occur in isolation, but create reality for individuals. Thirty years ago today my 67-year-old father died from a cancer that was treated as an infection until just weeks before he died. Missed diagnosis? Delayed diagnosis? For me, the memory is he died too young, too quickly, and in a way that surprised his physician, who cried when he told our family that in fact, it was not an infection it was cancer. We have come a long way in 30 years, right? My father never knew a cell phone, TV remotes were the “new thing”, and computers were just starting to make a dent in how we work and live.

In some ways progress has been astounding; in other ways the pace of change is frustratingly slow. Last week a team of MedStar Institute for Quality and Safety colleagues and I met with others from six healthcare organizations from across the country, SIDM leaders, and leaders from the Institute for Healthcare Improvement (IHI). Together we committed to 9 months of intensive work developing a “prototype” collaborative to guide organizations that are serious about improving diagnosis. The SIDM conference that I attended had more poster presentations than they could handle, and the lineup of speakers transcends from gurus in the quality and safety space (Don Berwick, Dave Mayer, and Amy Edmondson among others) to physicians, nurses and health services researchers in the trenches, who are all too aware that missed diagnosis, incorrect diagnosis, and delayed diagnosis remain a looming challenges.

Perhaps I should not have been surprised that when I shared my Facebook “memory”, the comments from friends included new stories of how “we” got it wrong, got it “late” or didn’t listen when they tried to TELL us what was going on with their health. These stories are sources of real dissatisfaction.

The report from our IOM panel suggested that each of us will experience at least one diagnostic error in our lifetime. An important way to help mitigate this reality is to acknowledge that diagnosis really needs to be a team endeavor. The ideal team benefits from patients and families at the center surrounded by physicians, nurses, allied health professionals and others, working together, sharing information, insights, concerns, and successes on behalf of better health for individuals and populations. Watch this space for how to join us on the journey.

I welcome your comments, questions and stories at mailto:[email protected].