Many of you may have already read Josie’s Story. Sorrel King sent me a copy a few months back, and it has sat patiently on my bookshelf, waiting for me to discover the beauty that lay inside. I think I waited to read it because my heart has been filled with Lewis’ story, and Michael’s story and Alyssa’s story…young people I never knew, but who have influenced my professional journey in ways I could have never imagined when planning a course of study or career path. I think I waited to read her story because I wasn’t sure I had room to take into my heart so profoundly, yet another story of loss at the hands of the industry in which I work. But I picked up Josie’s Story last week, and could not put it down.
While the book reads like a fiction novel with well-written, lovable characters moving through the journey of an unthinkable loss, the unfortunate truth is that it is an autobiography. While Josie was here only a short time, I believe she was here to inspire her Mom to tell their family’s story in a way only she could–with honesty, love and a strength that is truly inspiring. Their story is a road map and a touchstone for dealing with grief–a reminder that the only way through something so painful, so unimaginable, is to feel it. It’s also a reminder that grief is an individual journey, but that in time, you can reach the other side and find a life you may have never imagined could be so wonderfully different from what you had planned.
Josie’s Story is also a brief history of patient safety, as the origination of so many Patient Safety programs in place today began as a result of the Josie King Foundation, and Sorrel’s blood, sweat and tears. Care for the Caregiver, the Keystone Capstone, CUSP and a partnership with Peter Pronovost–all of these lifesaving programs have a tie to Josie, Sorrel and their foundation. The book itself is also being used as a foundation for teaching patient safety principles across healthcare, and in book clubs around the country. It’s a must read, and a heart-hitting reminder of the basic reason we go into healthcare–to protect patients first from harm, and then to heal them. It’s a reminder that we must also change our systems to protect the well-meaning, hard-working care providers who often suffer in silence when patients are harmed. From the book:
I realized as I flew home that Josie’s story had struck a chord with the very people who could fix the problem. I could not stop thinking about their reaction, how they listened to me, how they cried and confided in me. They seemed hungry for something, though I wasn’t sure what. Maybe it was the fact that I was coming at patient safety from a different angle. I wasn’t talking about the data and statistics. I didn’t have a lengthy PowerPoint presentation. I wasn’t one of them: I was an outsider with a real story.
I’ve known Sorrel a relatively short time on my own patient safety journey, and have always been inspired by the way she carries herself, her professionalism and especially, her sense of humor. I did not know the details of her family’s story until recently, and having read their story, I have a new level of respect for her as person. The ability to live life authentically, bravely in the best of circumstance is a characteristic I deeply admire, but to do so throughout a time of such trial is a reminder of how resilient each of us can be if we open our hearts to the love and strength within. Thank you, Sorrel, for being here to show so many a path through grief, and for being someone the healthcare industry has listened to. As we continue our journey to make care safer for every patient, I truly believe it is stories like Josie’s that inspire the greatest movement forward. We are after all, humans caring for humans, and it’s our stories that make life worth living.
Confession… I am hooked on three foods – Peanut Butter, Chocolate Chip Cookies and Grilled Cheese Sandwiches. I keep a spoon next to the peanut butter jar in the cabinet and always zero in on the Mrs. Field’s when I get to the mall. Grilled cheese sandwiches, like mom used to make, have been more challenging to find until this year’s Telluride Patient Safety Roundtable and Summer Camp.
While walking through town this year, I came across a grilled cheese cart right on Main Street. It was set up across the street but like Pavlov’s dog, I crossed quickly while beginning to salivate. Dickie, the wonderful woman who owned the cart, offered several different types of grilled cheese sandwiches, and these were not your average grilled cheese either. Dilemma time – what should I pick? Habanero cheese, cheddar and bacon, apricot and brie…I had a big decision to make. I finally settled on the more traditional cheddar and bacon, and with one bite I was hooked.
During the next two weeks, I found myself sneaking out during lunches, skipping the traditional Summer Camp faire, and quickly walking the three blocks to Dickie’s stand to get my fix. By the fourth day, Dickie was letting me sample some of the newer offerings she was considering before adding them to the menu, including a Brie and Tart Cherry sandwich, which quickly became my favorite. I was in heaven.
My noon habit was soon discovered however, and after a couple of days, students and faculty alike started to notice my quick, back door exit as soon as the group broke for lunch. They started to question the grin on my face as I sat in the back of room, eating something out of a paper wrapper. To my surprise, but not before weathering a number of creative cheese jokes, people began to ask if they could join me on this grilled cheese pilgrimage. By the last two days of the Roundtable, we were like lemmings…a line of committed people walking to the grilled cheese cart. We became a “village” with a mission.
So why am I sharing this? Be it grilled cheese or patient safety, it only takes one passionate person to start a village. The mission of the Telluride Patient Safety Summer Camps has been to take passionate and caring young healthcare leaders and show them how to create their own village of like-minded colleagues at their institutions. These young leaders have been creating their own patient safety villages back home, and it is clear this movement is becoming contagious. I am reminded of Margaret Meade’s mantra, a thought I have often returned to on the journey to make care safer throughout my career:
“Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it’s the only thing that ever has.”
For the last 18 months or so, we have been sending out our Monday morning “Good Catch” of the Week. Our initial email list included about 30 associate leaders, and it was a weekly email highlighting a story we had heard about through our Quality & Safety Directors across our health system. Our initial intent was to recognize caregivers at the front lines for all the great work they do every day. Through their mindfulness (sensing something wasn’t quite right) – and their actions (stopping the line), our patients were safer in our environment…and with the knowledge gained, we now had the ability to seek solutions to possible clinical care gaps. Both associate empowerment and recognition, along with greater knowledge about the health of our system, all are instrumental as we continue to seek high reliability at MedStar Health. An additional plus around our Good Catch celebrations is the Joy and Meaning we hope to inspire within our front line caregivers…something that is so badly needed in healthcare today.
And it’s working! Our Good Catch stories have become infectious. Over the course of the last 18 months, our email list has grown to almost 2,000 of our associates–a result of receiving many requests to, “please add me to the list”. Our Good Catch program has taken on a life of its own, and we no longer have to seek out stories from the front lines of care - they are sent proudly by many. Many of our entities also have a Good Catch program of their own in place, which adds a nice “local flavor” to the celebrations. It is truly inspiring to see.
But what has been even more amazing, is that people are now reaching out to us for more good catch stories. Stories that they can use as Safety Moments to start every one of our meetings! As a result, our last Good Catch Monday, put out by Seth Krevat, AVP of Safety, provided some tips on how to find and take note of all the safety moments around us. Seth’s recent email inspired Richard Corder, a fellow Telluride faculty and good friend/mentor, to pen the following after an unfortunate event in his kitchen. Richard’s story highlights the importance of the term “unconsciously competent” – doing certain tasks so often that we take the related risk involved for granted, and begin without thinking while multi-tasking, or with numerous distractions occurring around us. Pilots follow what is called “sterile cockpit” - no personal conversations or distractions during take-off and landing when the plane is below 10,000 feet so they stay focused on the task at hand even though they have done it thousands of times. In healthcare, there are many rote tasks related to the delivery of care and taking even the simplest of those for granted can result in harm to a patient or provider. Richard’s story (Re-learning the lessons of distractions and over-confidence) is well worth the read, and shows how even the simplest of kitchen tasks can present a risk when not staying mindful and in the moment.
Last week, we were humbled to share Dr. Roger Leonard’s story, “Not Retired”– a story that initially began as a reflection by Roger after coming to the aid of a fellow passenger in need of emergency medical care onboard United flight 575. As with many stories and events such as this, details often unfold in the aftermath that illuminate just how impressive human nature proves itself to be. As a follow up to those who have been reading, we do have some good news to report. Roger was able to speak with both the wife of the patient and his cardiologist, who described the event as “the most amazing save he has seen in his career”. Of course Roger is quick to point out that this amazing save is due in large part to many people on board, and on the ground that day. From the passenger sitting behind the patient, who though shaken, alerted the crew of a problem, to the skillful direction by the cardiologist upon receiving the patient in a small Midwestern town in the early hours of the morning, to the professionalism of the airline crew, the paramedics and every hospital team member who contributed to this incredible and successful outcome.
As the story has evolved, it becomes ever more difficult to separate it from a made for television movie. This was a very sick patient who survived cardiac arrest at 40,000 feet, and then was kept alive as the plane diverted to a hospital midway between arrival and departure cities, a total distance of over 1600 miles. And this was only the beginning of his fight for life that evening. Upon arrival at the hospital, the patient was in cardiogenic shock and still had to undergo placement of an intra-aortic balloon pump to help support his failing heart, along with three coronary artery stents urgently placed to open occluded vessels. Hypothermic care was initiated for 48 hours to help protect from possible neurologic damage, and he also survived a number of days on ventilator support. Each procedure individually presents its own survival challenges, but collectively, every cell of even the healthiest of patients is pushed to extreme limits.
When Roger finally had the opportunity to speak with the patient’s wife and cardiologist, the patient was awake, alert and eating a chicken dinner. The wife shared that he gave Roger a thumbs up. Everyone involved in his care believes he will make a full recovery, and while so much of an event like this can be attributed to luck, it was the skill of all involved, along with their commitment to providing the best possible patient care and customer service, no matter the circumstance, that made this luck reality. It also speaks to the beauty of processes put in place on airlines and in healthcare to make luck reality. And the debrief initiated afterward, without knowing the outcome for this patient, shows how committed everyone involved was, and is, in making certain the next patient or passenger has the same, if not better, care.
Roger always say, “It’s all about the patient”. But this story is also continued evidence of the good that happens in healthcare every day by caregivers who truly put patients first. The majority of caregivers will tell you this was all in a day’s work, a very extraordinary day perhaps, but a day you will not find promoted on the front page of any major media outlet. In our book, this was truly heroic—and we hope that in the days to come, more healthcare stories of heroism by these good caregivers are picked up and shared.
During the Resident Patient Safety Summer Camp in Telluride two weeks ago, the group joined in an emotional discussion led by one of our patient advocates, Carole Hemmelgarn, also a graduate and educator for the University of Illinois Medical Center’s MS in Patient Safety Leadership. Carole’s talk centered around communication, and the power words hold within the healthcare environment–a lesson gleaned from her own family’s story that began with their young daughter, newly diagnosed with cancer, and almost in the same instant, also misdiagnosed and labeled as anxious.
I’ve heard Carole fight through tears of grief more than once as she has shared her family’s story, imploring the medical profession be careful in the words they choose to describe and label patients – both formally in a chart, and informally among colleagues. This time, however, I had a flashback to my own graduate training in sport psychology, where we studied in detail the differences between state and trait anxiety, two very different states of arousal, and different still from a full-blown DSM-V diagnosis of a generalized anxiety disorder. I asked the group if they understood the difference between state and trait anxiety, would they treat each of the two the same, and what assumption would they make if they came across the word “anxious” in a patient’s chart. The answers I received from a few in the group were confident, but unconvincing, and I wondered silently at the depth and type of training medical students receive around the nuances of mental health.
Reflecting on what I had learned years ago, it dawned on me that Carole’s little girl most likely had not been properly assessed to have had this label attributed to her upon a first meeting–something the family knew but no one was listening. To my knowledge, she was not seen by a mental health professional, or given a formal assessment for anxiety. However she was a child newly diagnosed with a disease other people in her life had left her world as a result of, and she was an intelligent, sensitive, thoughtful young person who put two and two together–easily becoming state anxious, if she was truly anxious, or just attributed so by someone lacking the knowledge, empathy or time to understand the power one word can carry when recklessly placed into a medical chart in judgment.
Carole’s story always leaves a lasting impression with her audience, and one of our Telluride Scholars, resident physician Lakshman Swamy MD, shared the following reflection on our Telluride blog in, Thinking About the Medical Language:
…We heard a powerful story about the impact of a casual word thrown into a patient’s chart and how that created an anchoring bias that ultimately cost a child’s life — unnecessarily…
…I’ve been thinking in particular about how many normal colloquial words — like anxious, delusional, confused — have a distinct meaning in medicine. When my patient’s nurse tells me that he is confused, it doesn’t mean he isn’t understanding something and needs clarity. It doesn’t mean that there is a misunderstanding. It means he is not thinking straight because of underlying illness. This gets interesting and tricky when we translate medical English to colloquial English. What is worrisome, however, is when we are flippant with these words. I hadn’t realized the impact that the language I use can have on patients, families, and ultimately the course of a patient’s care.
For example, during transitions of care — handoffs between inpatient providers in particular — the new team has a strong inclination to believe what the old team says in their signout. A casual word in that signout — such as “anxious” when you mean that the patient is fearful, or “confused” when you mean that the patient is unaware of the treatment plan, or “delusional” when the patient might just be hopeful — can have an intense impact on the new team’s perception of that patient. We should be aware of the impact of our language but also more clearly train our students about the potency of what we write in a chart.
At the end of that emotionally charged day two-weeks ago, Kim Oates MD (@KimRKO), a tenured pediatrician and regular Telluride faculty, brilliantly summarized the thought-provoking conversations. I had sat behind him most of the meeting that week and watched on more than one occasion the emotion stories like that of Carole and her daughter triggered for him. In his soft, Aussie accent, his summary gently but firmly suggested to all in the audience to be certain to understand and recognize when making a judgment versus conveying facts, and to be very careful not to confuse the two. And to make sure that what goes into a patient’s chart is fact.
There are always stories…
Young FJ turned one year old last week – what a beautiful child and how can you not love that smile. But she wasn’t always smiling this past year, in fact, she was crying and suffering for much of her first year of life. She is the daughter of a Telluride Science Research Center (TSRC) colleague, the group that hosts our Patient Safety Roundtable and Summer Camps each summer. When her Dad stopped by to congratulate us on our tenth anniversary, and to personally thank us for the patient safety work we do each year in Telluride, he also shared that like many others, healthcare lapses have touched his family as well…
Dad shared that little FJ had struggled to keep food down throughout the majority of her first year of life. She cried after almost every meal and she wasn’t growing either. At seven months, she weighed only 10 pounds, putting her at the first percentile for her age on the growth scale. Her parents tried to tell their pediatrician something was wrong…they had two older children, were not first-time parents and knew FJ’s first year to be far from the norm. They shared that their daughter was unable to keep anything she ate down, yet they were told this was normal and not to worry. In fact, they were told this was “normal and not to worry” by four additional pediatricians who they continued to look to for answers and a way to end their little girl’s suffering. Dad stated “no one seemed to be listening to us, no one wanted to look at the growth chart…they were so confident in their assessment and not willing to consider it might be something else”.
The family continued to search for answers, and finally did find someone who was willing to listen. This care provider asked a number of questions, thoughtfully listening to the family while taking many notes. This “two-way conversation” led to a solution for FJ, and as a result of the family’s tireless commitment to find someone who would listen, she is doing much better and once again thriving. Her parents know what has been causing her problems and feel something is being done to help her. And my guess is that infectious smile seen in the photo above is a more frequent sight.
In Jerome Groopman’s book “How Doctor’s Think”, he shares a story about his own wrist problems. How he saw five different physicians, all very confident in their assessments…and all wrong. None of the five physicians seemed willing to consider another possibility. We call this “premature closure” and there is a large body of research on the topic as it relates to misdiagnoses. But what is far too often overlooked is the wealth of information the family provides–clues leading to a correct diagnosis that are far too often ignored or devalued.
Our Telluride colleague is also a snow science expert and heli-ski guide. As someone charged with evaluating the safety of snow, he also understands the careful study of clues within the environment to diagnose mountain conditions in order to keep thousands of skiers, mountaineers and tourists safe each year. As a three-time parent, he is experienced in raising two healthy children already–working to keep his third thriving in partnership with her healthcare providers. After he shared his story with me that afternoon, he asked why those in the health sciences pay so little attention to two-way communication and listening as compared to other high risk industries. I wish I could have been able to provide a good answer to his question…
John Nance, a leader and pioneer in both aviation and medical safety and quality–and for the past 18 years, a familiar face to television audiences as the Aviation Analyst for ABC News and Good Morning America–joined us this year in Telluride for our Patient Safety Summer Camps. John, along with other international patient safety leaders, have come to Telluride over the last 10 years to share their knowledge and passion for patient safety and patient-centered care with the rising leaders of healthcare. It is with a heart full of gratitude that we have welcomed Lucian Leape, Cliff Hughes, Paul Levy, Helen Haskell, Rosemary Gibson, Kim Oates, Richard Corder, David Classen, Carole Hemmelgarn, Bob Galbraith, Gwen Sherwood, Patty Skolnik, and so many other wonderful “teachers” each year to our faculty. Many come to CO every summer because they believe so strongly that we must Educate the Young if we are to deliver the highest quality, safest care possible to our patients.
At this year’s Summer Camp, John spoke about the similarities between aviation and healthcare, highlighting the importance of Teamwork, Effective Communication, Leadership, and the power of Debriefing after all activities. His educational messages came to life when one of our faculty, Dr. Roger Leonard, boarded his flight back to the east coast. Roger’s story, shared below, exemplifies almost every skill John spoke to our group about just days ago. While there is still much work ahead for those of us on the Quality and Safety mission, we sometimes forget all the good things our professional caregivers do in the face of very dysfunctional health systems and decreasing resources. Thank you Roger, and a heartfelt thank you to all caregivers who make a difference each and every day in the life of another.
“Not Retired,” Previously posted on the Telluride Summer Camp blog, by Roger Leonard MD
My flight from Denver to Washington Dulles was late to depart due to thunderstorms. We left at 10:30 pm and I tried to sleep, but was sufficiently alert to hear the page at approximately 2 am: “Any medical personnel on board?” The flight attendant escorted me to first class where a passenger had what she thought was a seizure. And she was probably right – only it was due to sudden cardiac death. No pulse, no breathing, unconscious. Male, perhaps 45 yo, looked fit, no companion.
The flight crew assisted me in lifting him into the aisle. Because of their training, by the time that I started CPR, one of the attendants had the AED out and started handing me the pads for placement. V.Fib. We shocked once and got a rhythm. He started to breathe and the oxygen tank was right there. He had a rhythm, he had a strong pulse, he was breathing. I said: “This is good.”
I tried to get a BP, but the sphygmomanometer was broken. We got another emergency kit and it had a cuff that worked – BP ~115 systolic. I admit that I struggled to get accurate BP recordings because my ears felt like I was 12 ft underwater from the altitude change (and probably a need to see an audiologist). We sorted through the medical kits and I finally found the NS under the neatly packed top layer of drugs. Found the tubing, tried to maintain sterile technique, and got a decent IV in his forearm while fighting postural movements of his upper extremities. Then came VF arrest #2 and #3. Shock, shock, back to NSR. I was able to push lidocaine 100mg IV.
While scrounging around the medical kits, I found an endotracheal tube. To me great relief, he kept breathing on his own and had good color. I hadn’t intubated anyone in 40 years. Meanwhile, the pilot was diverting us to Louisville where the EMS team met us. You know how tight the aisles are. We managed to get him onto a back-board, but then had to tilt him to nearly 90 degrees to turn the corner. He was on his way to the hospital and after refueling, we were on our way to Dulles.
I got applause and handshakes as I returned to my seat. How strange! After our 4 days together, I could only think that “it’s about the patient, not about me.” I was particularly aware of the calm and effective work of the flight attendants on our team.
In Louisville, we needed new fuel and a new flight plan. So, with the extra time I asked to gather all the attendants and debrief. What went well? 1) We successfully resuscitated a passenger with SCD at 30,000 feet. 2) An AED was mission critical and the staff was trained in its use. 3) Our treatment lasted about 45 minutes; we were calm; we explained what we were doing among the team; no one panicked including the other passengers. 4) EMS personnel were at the door upon the Captain’s diversion.
What didn’t go well? 1) the first BP cuff malfunctioned. 2) I struggled with obtaining accurate BPs. 3) I was slow to get what I needed out of the medical kits; the IV bag, couldn’t find a tourniquet 4) The patient had not regained consciousness upon departure, but groans were evident.
How can we improve? 1) preventive maintenance (PM) on medical equipment. 2) I suggest a digital BP cuff that reads the result without my impaired use of the stethoscope. 3) We should ask nearby passengers to vacate their seats so that we might spread out the medical equipment and drugs. 4) have EMS use an entrance that avoids tight turns, if possible.
We become physicians to heal the sick, relieve suffering, comfort those in need, and occasionally we may save a life. I do not know the outcome for this gentleman. I am worried; yet, I am hopeful. I strive to role-model humility. Yet, transparency reveals that I am proud to be a physician and proud of our team of strangers at 30,000 feet.