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 paradigm-shifting session for many, Kim Oates, MD (@KimRKO), a tenured pediatrician and regular Telluride faculty coming all the way from Australia, brilliantly summarized the challenging 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 young healthcare providers 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 actually lands in 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.
Many times, nothing more needs to be said. A reflective post on the Telluride blog this week from Caitlin Farrell…one of our Telluride Student Scholars who shares the gift of her story with classmates and faculty. Thank you Caitlin! Please share with your healthcare communities.
Published June 16, 2014 | By CFarrell
Yesterday was Father’s Day, 2014. I woke up before everyone else in my room. Rolling out of bed, I padded down the stairs and brewed a cup of much-needed coffee. Pouring my face over the steaming cup, I looked out my window to the inspiring landscape of endless white-capped mountains. This year marks the ninth Father’s Day that I have spent without my dad, but the mountains and my purpose this week made me feel as though he were standing there with me, sharing our cup of morning coffee, just as we used to.
After taking the gondola ride into Telluride, the students and faculty plunged into our work of expanding our knowledge in the field of patient safety. We watched a documentary outlining the tragic case of Lewis Blackman, a 15-year-old boy who died due to medication error, miscommunication, and assumptions made by his medical team. The film explored the errors in Lewis’s care that have become far too common in our medical system: the lack of communication between providers and families, the establishment of “tribes” within medicine who do not collaborate or communicate with one another, the lack of mindfulness of the providers, and the culture in which all of these errors were permitted to happen.
But what resonated with me the most were the feelings described by Lewis’s mother. She defined her experience as one of isolation and desperation. “We were like an island”, she said. There was no one there to listen to her concerns. Ironically, Lewis died as a result of being in the hospital, the one place where he could not get the medical care that he so desperately needed.
A pain hit my stomach as she said these words. My family also shared the feelings of isolation, uncertainty, and loss throughout my father’s stay in the hospital. After Lewis’s death, his mother was not contacted. Instead, she was sent materials about grieving and loss in the mail. After an egregious error occurred during my father’s medical care, a physician did not give us an apology, but a white rose by a nurse.
An interesting discussion arose after the film. Our faculty emphasized the need for physicians to partner with the families of the patients. This will create not only a team during the course of treatment, but will cultivate compassion, empathy, and trust in the case of a terrible event. I know that despite the growing number of “apology laws” that protect, and even mandate, physicians to apologize to families after catastrophic events, few physicians actually do apologize. This results in families feeling like the events were there fault. I can say from experience that this is a burden that you can carry with you for years to come.
As I got back to my room and put down my books this conversation mulled in my mind. The death of my father has given me the fuel to pursue medicine and patient safety as my career. It has instilled in me passion, energy, and determination. Yet the one thing that I have not found in the nine years since my father’s death is forgiveness. Although I do not hold any one doctor or nurse responsible for the detrimental outcome in my father’s care, I have not been able to forgive the team for what happened. I have not been able to go back to that hospital. And as I sat on my beautiful bed in the mountains, I realized that I also harbored another feeling: fear. Fear of becoming a physician who does not practice mindfulness, who does not partner with my patients, who does not apologize for my mistakes. I am afraid that despite my best intentions, I will only continue the vicious cycle. A fear that I will allow my patients to feel as though they are “on an island”.
I put away my computer and got into bed. Lying awake, I took in the gravity of the day. I am so grateful to be here at Telluride among students and faculty who share my passion in patient safety. I could not have imagined a more perfect way to spend Father’s Day.
Having just concluded another inspirational week of learning at our Telluride Patient Safety Roundtable and Resident Summer Camp, I couldn’t help reflect with our faculty on all the amazing and passionate young caregivers who were with us. Thirty resident physician leaders, each chosen by medical center leaders from across the country, actively engaged with international leaders in patient safety and patient advocacy, with the goal of making patient care safer. All of our faculty commented that the experience and passion of the residents grows each year, many citing the influence of past Telluride Resident Scholars who have led change and served as role models at their institutions.
However, what all of us also noticed is the growing frustration shared by many of these resident leaders. Their personal stories describe a health system that is totally broken – poor or little communication among care teams, disruptive and abusive caregivers, extreme work demands and pressures being put on them to get things done even when it means putting patients in harm’s way. Some shared that on call, they are being asked to care for as many as 50-60 patients while also having to admit new patients to their units with little or no support – a set-up they say all too often causes patient harm. Others shared their fear in calling for guidance from higher level care providers due to an underlying culture that says “you are weak and inadequate” if you call someone for help even though that call and assistance could save a life.
Many also shared their personal “silent hurt” after being involved in an incident that harmed a patient. Telluride provides a safe environment for attendees to share personal stories they cannot share at their own hospitals. While a number of institutions have started care-for-the-caregiver programs, this growing “second patient” concern among our resident physicians is not being addressed. I would like to share one of the many reflective posts authored by one of the residents this past week on the Telluride Summer Camp blog – this one by Nicholas Clark, a resident physician at Children’s Mercy Hospitals and Clinics of Kansas City. I had the opportunity to visit CMH last year – they are doing great work in safety and quality – their commitment to patient safety was again very evident in the five days I got to spend with Nicholas.
Where is our support… On Wednesday 6/11 we discussed the case of “Sally,” a 9-year-old girl who died because of medical errors. Regardless of how you look at it, this is a tragedy. In our discussion, the presenter described why this resident was “set up to fail.” The resident had undergone numerous emotional battles in the prior months on the wards and in the ICU, had struggles outside of the hospital, and ultimately quit the residency program as a result of Sally’s death, but there was not one discussion on Wednesday about how we should care for our residents.
Unfortunately, this resident’s story is all too common. Many of our Telluride attendees sympathized with the resident outlining how similar their experiences have been to Sally’s resident. I too can look back and see myself in that position. It is well documented in the literature that residents, regardless of profession, develop higher rates of depression and suicide than the general population as a result of our profession. Up to 20% of residents and medical students will face depression, and up to 74% of residents will face burnout. Those residents who battle with depression are six times more likely to cause medical errors than those residents who do not suffer with depression.
While it is easy to point the finger at the resident or the system for causing medical errors, and, at the same time, provide support for the family and the patient, there are few programs in place that support our residents and medical students. These are individuals who choose the medical field to cure pain and suffering, not cause them. When residents discover that, despite their best knowledge, skill, and intention, they harm someone, it is absolutely devastating! Do not get me wrong. I completely agree that we should first tend to the patient and family that have been affected.
However, we cannot forget about the second patient that was harmed – the resident. We need systems that automatically fire to debrief residents when harm occurs so they can learn from the event. We need systems that automatically fire to find systematic solutions to the problem so no other patient is harmed. We need systems that automatically fire to provide support for patients and families who suffer harm. However, we also need systems that automatically fire to provide emotional support for our residents when they are involved in a case of patient harm. Finding that you were part of the cause for patient harm can have a devastating and lasting effect on a resident. Residents are already a set up for depression which, as mentioned, is then a set up for further medical errors. These two perpetuate each other in a never-ending cycle. We need to break the cycle. We need support!
The stories shared by many of the residents reminded me of stories I have read about the psychological effects many wonderful and courageous military personnel suffer due to combat stress and personal events that have changed their lives. These are some of our top residents, chosen because they are Chief Residents or leaders among their peers. If they are struggling, how are others surviving? Our resident physicians are our future. They enter healthcare hoping to heal and do good things. Instead many finish their training traumatized and changed for the worse. They carry psychological scars that continue to haunt them for years…and they struggle with why they chose the field of medicine as a career. As Nicholas asks “Where is their support?” To be continued…
Shared decision-making, choice and compassion are three key takeaways from our second day at the Ah Haa school in the Sangre de Cristo mountains. The Michael Skolnik Story has served as the Telluride Patient Safety Summer Camp teaching tool that conveys lasting learning around shared decision-making and the informed consent process by connecting the heart with the head. Michael, like Lewis yesterday, is another senseless casualty of a healthcare culture slow to evolve. While the more overt failures to protect him may have come in the form of a poor informed consent process and lack of shared decision-making with his Mom, Patty, and Dad, David, there were also many poor choices made by those charged to care for him along the way.
Choice has come up a number of times, a number of different ways already this week. One of the residents yesterday mentioned a near miss she experienced with an infant, and how a number of nurses and residents knew long before the baby crashed that something was going wrong. Yet no one chose to challenge the poor treatment choices the attending physician was making. With a shaking voice she shared it was infinitely harder to look at what was only moments ago a healthy child, and know you could have chosen to do something to influence a better course for a patient. In both Michael and Lewis’ cases, others knew something was not going as it should in their care, but failed to speak up before it was too late. Everyone here in Telluride this week–everyone that touches healthcare–has the power to improve the life of a patient by the choices they will make upon returning home.
Choice was also at the center of Paul Levy’s (@PaulfLevy) negotiation session. Win-As-Much-As-You can, a game that allowed players to either cooperate and win a modest amount of money, or choose to break bad, and go for it all at the risk of losing the trust of the group, provided immediate consequences to choices made. The experience of negotiating a simulated real estate deal laid the framework for understanding first-hand how choosing to seek, and honor, the interests of the “other” in any deal, made for joint decisions that built relationships. These negotiation skills, Paul shared, would not only serve our attendees well when having to come to agreement on patient care with colleagues, but also in life when negotiating jobs or navigating relationships.
And as Day 2 at the Telluride Patient Safety Resident Summer Camp came to a close, Kim Oates MD (@KimRKO) from Australia encouraged attendees to reflect on what the barriers of showing more compassion in the daily delivery of healthcare might be. The residents shared the following list, and Kim gently guided the group to look at the flip side of their perceived barriers–to see where they might be able to squeeze in just a little more compassion.
- Self-preservation: Having to deliver bad news on a regular basis
- Maintaining the right level of professionalism
- Being exploited, or feeling taken advantage of, when being compassionate
- One’s own nature: Being more of a thinker than a feeler making expression of emotion more challenging. Kim commented that it’s good to know your own comfort zone, and to find authentic ways within one’s own limits.
- Lack of confidence, anxiety on how one is viewed by colleagues and patients–The closer to being an attending, the more greatly this resident valued training others to show compassion, as well as expressing it herself
- Cultural barriers that prevent touching — To show greater compassion in these cases, one resident suggested taking a meaningful pause, offering a tissue, listening, or sharing information. Kim suggested that while this approach may take more time upfront, it can save time overall because it improves relationships, and with it, patient care.
- Technology creates barriers — i.e. location of EMR requiring back to face the patient, walking in focused on iPad. Kim shared how he would rearrange his office before patients entered to remove physical barriers.
Kim closed the discussion by encouraging everyone to consider where they might add a little more compassion in their interactions with others, reminding the group that professionalism does not have to equal being emotionless.
Each year in Telluride, we kick off the week’s conversation on open and honest communication in medicine by showing the Lewis Blackman Story. For the 10th year in a row, Helen Haskell, Lewis’ mom, was part of the Telluride faculty and for the third year, led the post-film discussion along with Telluride Patient Safety Student and Resident Summer Camp founder, Dave Mayer MD. Many of the resident scholars commented on the various levels of communication failure that occurred during Lewis’ care. Doctor to patient communication, provider to provider communication, power gradient communication challenges–it has been clear for some time that being uncomfortable communicating with anyone in the circle of care to patients puts the patient, and also caregivers, at risk. Lewis’ case is an unfortunate example of what goes terribly wrong when open, honest communication is not valued in a health system.
For those of you who haven’t heard Lewis’ story–he is someone you would have loved to have met. He would be 28 years old this year had his path not crossed that surgical suite almost 14 years ago. An actor, a scholar, an athlete — a lover and friend of the underdog–Lewis was the teen you hoped your kid was hanging out with when you weren’t around. By all accounts, Lewis’ was poised to do wonderful things and he left his mark on life early through his caring, thoughtful nature, a witty sense of humor, a loving son and brother, and now an inspiration to many of us trying to make care safer for patients today. He is one of many who serve as an example of continued and senseless loss in our slow movement toward zero preventable harm in healthcare. We need to decide today, that it’s time to take action in new ways to prevent the same stories from repeating.
For example, what can we do to improve our professional communication skills among healthcare teams so that we ensure families like Lewis’ do not suffer a similar loss? So that good, conscientious caregivers are not put through the traumatic experience of harming a patient out of fear of speaking up in a toxic culture? Which medical education programs are stepping up to incorporate interpersonal communication skill building into their core curriculum from the first day of medical school? Please share best practices in teaching medical and nursing student communication, and start an open conversation about better ways to teach communication to care providers at every level.