Today’s post is by guest author, Carole Hemmelgarn, who generously shares a reminder to all on why patient safety work is so important, and why National Patient Safety Week will continue to matter even after we get it right. Carole continues to give her time as a patient advocate, coaching healthcare organizations across the country on the power of words, as well as a better understanding on what it means to truly communicate with patients.
March 8th starts National Patient Safety week and it is with great irony that I write this blog because it is the anniversary of the day my daughter, Alyssa, died from medical errors. I am grateful for the focus being made in the field of patient safety. We need to become High Reliability organizations, enhance our communication skills, offer communication and resolution programs, implement bundles and the host of other programs that impact safe patient care.
However, I want to bring the focus back to the human side of patient safety and that is the patient and family after harm has occurred. There is this aftermath, which is rarely spoken of, and it is what happens to those survivors living without their child, spouse, parent or sibling years down the road.
I’ve come to realize grief is my twin. It will never go away and we have learned to coexist. Please understand grief is not always bad. I find solace in my grief because we speak the same language. We laugh and cry together and there is no judgment. At other times, my twin is like an anchor weighing me down causing me emotional pain and draining my often limited resources. So you may ponder why the dichotomy? Well, because life moves on, but it is different for us now. I’m a different person. My beliefs, values and what I held to be true have turned upside down.
What most people don’t realize is loss of a loved one, and in particular, a child, changes so many things.
- Marriage changes. I’m no longer the person my husband married and trying to figure out who we are in this new space is exhausting. Parents grieve differently and the one thing they don’t want to do is hurt their spouse because they know they are already in pain. This just opens up the door for communication problems.
- Your children are affected, but rarely do we talk about the impact it has on them. My husband and I often ask the question “Is this who our son is, or is this who he became after his sister’s death”? It is difficult to watch your son cringe when asked if he has any brothers or sisters and he says “no” because he can’t go there and talk about his sister.
- Your relationship with family members change. Sometimes they become stronger with certain members of your family, and others, a riff occurs because they expect you to move on or be the person you were before, and that individual no longer exists. Partaking in family events that once use to be enjoyable can be extremely emotional. You are there, but only as the great pretender, when underneath you are screaming to be set free. Why? Because you are watching their children progress through life, and do the very things, your child will never get to do.
- Friendships change…..
The most difficult are the milestones your child will not experience: moving through elementary, middle, and high school, not graduating from college, getting a job, married or having children. These events go on for years and this is the aftermath not seen.
I share this with you because I want you to see the importance of the work you do in the area of patient safety. So as you participate in the 2015 National Patient Safety Week, your goal is to make sure we minimize and mitigate the aftermath of harm I discuss above, and my goal is to help others avoid having grief as their twin.
If there is any way to get John Lasseter and leadership from Disney or Pixar involved in developing healthcare of the future, I think we might want to consider recruiting their team. Big Hero 6 opened November 7th and led box office sales with $56M in tickets sold its first weekend, adding another $36M this past weekend. Urged on by a seven-year-old who is in the process of developing edible electricity to make dogs talk, my family purchased six of those tickets. Four adults and two kids spent Saturday evening just how Walt Disney intended us to: at the movies!
Both Disney and Pixar have mastered the art of entertaining kids and adults with their stories, and lovable, life-like, animated characters. In Big Hero 6, it is the personal healthcare robot, Baymax, and fourteen-year-old orphan genius, Hiro, who steal the show. Baymax comes to life when he hears the word, “Ouch!” Breaking free of his 2′ x 2′ storage cube and inflating to StayPuff marshmallow form, he then waddles comically over to whoever he perceives may need his pre-programmed healthcare expertise.
“On a scale of one to ten, rate your pain,” says Baymax, as the visual pain scale lights up across his large, puffy chest also serving as a monitor for patients to view any medical findings. Baymax then scans his patient from head to toe, assessing location of injury or type of illness, and proceeds to prescribe proper treatment from a database full of disease information.
The kicker? To make Baymax deflate and return to recharge in his storage cube, his patient must first say, “I am satisfied with my care.” Wow! Go Pixar!
Director Nino Kirtadze had no idea the patient education tool she created in the somewhat engineered documentary film, Don’t Breathe–a film intended as a study in the fragility of human nature. From my seat, however, the story she captured only further illuminates how in-the-dark many patients remain when it comes to their own health, and the care they receive. While the trailer alone tells the story many intimate to healthcare live each day, discussion after the film revealed the team had no intention of using it to educate patients–even as the gentle main character traveled from one doctor to another, enduring professional and unprofessional examinations, his diagnosis becoming more and more ridiculous, almost comical, and all too close to reality in many circles of care. Almost comical that is, if you ignore the fact this man was experiencing in “real life,” the fear which accompanies any suggestion by a healthcare professional that one might need surgery, have heart disease or worse.
How can this story, or even simply the film trailer, be used to educate patients on the need to speak up and ask questions about what their healthcare professional may or may not be telling them?
And as a related aside, I give the Toronto International Film Festival (TIFF), and Toronto, 5 glowing stars. The line-up of film premieres, number of A-List attendees, quality of venues and restaurants all within walking distance, and the ability to see the top films, were unmatched by past experiences at Sundance or the Chicago Film Festivals. Next year will be TIFF’s 50th Anniversary, and I look forward to returning. On the bucket list next, Cannes!
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…
Please welcome our latest guest blogger, Sherri Loeb. Sherri is a nurse of 30 years and the wife of Jerod Loeb, Vice President for Healthcare Quality Evaluation at Joint Commission, who she, and the entire patient safety community, lost to prostate cancer last year (see Experiencing Both Sides of the Quality and Safety Chasm…) . Since losing Jerod, Sherri’s passion for patient centered care has only gathered more urgency, as she works to share their story and her nursing experience in a way that inspires change. She is also a member of the MedStar Health Patient and Family Advisory Council for Quality and Safety, as well as a member of the National Quality Forum steering committee for person- and family-centered care. Following is an excerpt from a recent blog post she wrote for HospitalImpact.org, What it takes to navigate healthcare: Engagement, compassion.
Patient engagement, patient-centered care, shared decision-making, patient experience and centers of excellence–all the latest buzzwords in healthcare. But do our industry leaders really understand what they mean or how to implement them, and how critical they are not only to the patient and family, but also to the ultimate goal of patient safety? From my recent experience I would say it’s rare.
I’m a nurse of 30-plus years who has worked in various healthcare settings. I have always been patient-centered and treated each patient as if they were family. Then, on Aug. 4, 2011, my life changed dramatically when Jerod, my husband of 25 years, as well as an internationally known patient safety and quality expert, was diagnosed with stage IV metastatic prostate cancer…
To read the rest of Sherri’s post, please click here.
Following is a Guest Post by Telluride Scholar and Alumni, Matthew Starr, MSIII, Saint Louis University School of Medicine.
Better imaging starts with better decisions. The goal of the 100K Children campaign is 100,000 good decisions when imaging children by June 30, 2015–
The 100K Children Initiative began with a summit series convened by the American Board of Radiology Foundation. The goal of the meetings was to develop a national strategy for safe, appropriate and patient-centered imaging. The meetings brought together a broad group of stakeholders, including patient advocates, medical professionals, and oversight agencies. I had the opportunity to attend two of the three summit meetings. Out of these meetings came several goals and objectives for optimizing medical imaging, a few of which are being addressed by this campaign.
My role in this campaign began with developing a series of process maps for the summit series. The maps highlighted the many pathways patients could take through routine healthcare scenarios. It became quickly apparent that a patient might receive unnecessary imaging studies because of the variations along the process pathways. As the campaign progressed, my role became focused on promoting our program to medical students, building a grass-roots effort to expand the reach of the campaign.
One of the things I found very interesting during my time in Telluride, were the discussion around how the IHI used medical students to promote the surgical checklist. The movement spread nationally mainly using the work of medical students. Then as a group in Telluride, we were able to develop a project of our own that focused on improving hand-washing practices at our various home hospitals. I was able to use these discussions in Telluride as inspiration as I try to promote the optimization of medical imaging in children to healthcare workers across the country. My biggest message for students is that now is our time to take responsibility for the safety of patients. This movement is a way to get involved at your own hospital and community by informing both physicians and parents about the importance of appropriate medical imaging in children.
In summary, the 100K Children Initiative asks sites to report how often they make good imaging decisions for children. In essence, we are celebrating the small wins that frontline teams achieve every day. The structure comes from Chuck Denham/Steve Swensen’s 5 Rights of Imaging. Focus will be the front end (Right study, Right order, Right way).
|Measure||Primary Target||Secondary Targets||Simple Tally*|
|1. Right study:Observation instead of head CTs for children with minor head trauma||ER Physicians||Pediatricians, family practice physicians, and families||ER nurses provide a count of the number of patients who don’t get a head CT but rather are given instructions for signs to watch for after head trauma|
|2. Right order:Single phase CT studies (head and chest)||Radiologists||Referring physicians (ER, pediatricians, family practice) and families||Techs count number of single phase head and chest CT exams that they perform|
|3. Right way:How often was a child sized CT protocol used||Technologists||Radiologists, referring physicians, and families||Techs count number of times they use a pediatric protocol|
|*Simple tally offers quick data turnaround and is based on the honor system. Can use administrative data to verify each site’s progress with measures 1 and 2. Can use dose reports to monitor each site’s progress with measure #3.|
- An easy sell for the pediatric specialty centers since they are already following these recommendations. They will become the key nodes in the local networks that prompt community hospitals to follow suit. Children’s Hospital Association will likely be a key partner.
- Each site identifies staff in ER and radiology who will be responsible for collecting data on a weekly basis and submitting it. How they collect the data is up to them. We will learn as we go.
- Each week, sites submit their weekly count in each category. Data is due each week by Monday afternoon. Results are reviewed on a Tuesday morning conference call.