The following is written by Guest Author and Patient Advocate, Carole Hemmelgarn
In the months of March and April I had the opportunity to take two amazing trips; one to Doha, Qatar and the other Sydney, Australia. Do I feel fortunate to have visited these incredible places? Absolutely! The irony is, however, I would not have been in either location if my daughter Alyssa’s life had followed its natural course.
I was invited to both places to be part of the faculty to teach patient safety and behavior change to the young emerging scholars in the fields of nursing, pharmacy, medicine and allied health. While these young individuals are regarded as our future patient safety leaders they represent something much more to me. They give me hope. Hope that we can start fixing a broken healthcare system by breaking down the hierarchy, improving processes and communication skills, creating resiliency, and learning to provide support and care to our very own healthcare providers. They are also the generation giving hope to patients and families; making sure we are at the center of care, and that our voices and stories are heard, listened to, and acted upon with dignity and respect.
Earlier this year I told my sister that 2016 was the ‘year of hope’ for me. People will tell me they want me to be happy, but I struggle to understand what happiness is or means. Hope, however, is something I can wrap my arms around. I can hope to see a beautiful sunrise while out running, to watch a smile spread across my son’s face, and to see a child exiting a hospital knowing they are leaving better than when they entered.
There is an incredible aftermath when you lose a child to medical errors. It is a topic rarely discussed and one no one can ever prepare you for. Grief is a journey; a journey without a beginning, middle or end. While those of us who have lost a loved one never want you to experience this overwhelming pain we would like you to understand why happiness may take time in returning, or hope may be the best we can ever do.
When I teach these young scholars, I share part of Alyssa’s story because it helps connect the head and heart, and we need to put this piece back into medicine and caring for patients. Every time I speak about Alyssa, I give a piece of myself and my hope is that you take this piece and use it to make change. The future of patient safety resides in hope because hope is not found looking down or back, it is only found looking up.
The stories shared during this year’s Patient Safety Awareness Week (#PSAW2015) were inspiring! In ETY’s Why Patient Safety Week Matters, Carole Hemmelgarn, Patient Advocate, shared for one of the first times her feelings of grief related to a series of medical harm events that took her only daughter, Alyssa. She wrote that “grief is her twin”, a twin that at times brings comfort and sorrow. Thanks to the power of social media, her message was carried like a gift to many around the world. The following comment confirms yet again that our stories matter to others–and our willingness to share them when ready can ease not only our own, but another’s suffering:
Your story is so important. I never thought of my grief also bringing solace. I lost my father and thought that was bad but 10 years later I would lose my sister and mother in the same year. I have cried (for a few minutes) every weekend since August 2013 when my sister died and I thought somehow I needed to stop because this is not normal. After reading what you wrote maybe I should stop trying and just rejoice in the memory of my loved ones a few tears is a small price to pay to remember them.
And from @MichaelDFranklin:
Do we realize that such a quote, “grief is my twin” is not specific to loss from medical errors, but to life itself?
Dave Mayer’s ETY post, Caring for Caregivers…, later in the week, served as insight into the grief felt by those administering care–even when that care goes as planned. He referred to an opinion piece in JAMA entitled, “What I Learned About Adverse Events From Captain Sully – It’s Not What You Think,” that discussed the stress involved in caring for others requires many to side-step a recovery process for the self that could revive and encourage positive coping skills for future stressful events. Caregivers are often expected to jump back into the next case without taking time to recover. This equaling of the patient-caregiver grief playing field reflects the silent suffering that can be occurring on both sides of the healthcare encounter when a simple conversation could be the bridge to healing. Grief multiplies in isolation–it can be lessened in the right company when ready. And as Carole did last week, the sharing of our own grief can also be a gift to a complete stranger. How beautiful is that?
How can we help multiply these gifts; stories of our selves by both patient and healthcare professional? Especially when medical training has only begun to consider the healing power of listening with the heart, as well as the head. This winter, I had the pleasure of hearing Atul Gawande speak at the IHI Forum where he shared insights gained while working on his latest tome of wisdom, Being Mortal. Of all the thoughts he shared that day, the one that has stuck with me four months later is the differing views he and his wife hold for end of life comfort. Atul said he is “down with Stephen Hawking”, and if he is simply “a brain in a jar and we can still extract his thoughts” let him live on! His wife on the other hand (and I summarize) has shared that if she even looks as though she can no longer enjoy life or share in the moment, pull the plug. This take home message is a reminder that individual choices related to how we live and die can be very different, even from those we love most. Unless we choose to talk about those choices–with one another, and with our healthcare teams–we remain a mystery to one another.
In the introduction to Being Mortal, Gawande reflects on how far our current approach to care as we age is from where we once were, or even where so many will find real comfort, including those delivering care. He writes:
I learned a lot of things in medical school but mortality wasn’t one of them…our textbooks had almost nothing on aging, or frailty, or dying…when I came to experience surgical training and practice, I encountered patients forced to confront the realities of decline and mortality, and it did not take long to realize how unready I was to help them.
There are many in healthcare–patients and caregivers–who also understand there is a better way. I recently found out that a good friend’s Mom was given 6-12 months to live at the younger-every-day age of 71. The choices she made throughout her life most likely have influenced the way it will end, but they are hers. She has found a doctor she likes to see her through treatment, and he is encouraging her to continue to make the choices that bring her comfort and as much joy in the remaining time she has with friends and family. She has found a healer, as well as a physician–someone who can sit with her and listen, hear with the heart and share experiences that might prove healing even though he cannot treat the disease itself.
Atul Gawande is on to something in Being Mortal. In fact, it could be one of his most important works to date. The suggestion that instead of being taught to diagnose, to treat, and to protect the hospital assets, a greater amount of time could be spent teaching healthcare professionals how to share in grief, to share stories of the self and to explore more deeply what is truly meant by the art of healing is an idea that each of us–patient or caregiver–can carry with us into care environments if we choose.
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.
This coming Saturday, April 26th, the Committee of Interns and Residents (CIR) will be hosting its next QIIQ Conference titled, “How to be a Lead Agent of Change: From Bedside to Transformative Care“, in NYC. Rosemary Gibson, Carole Hemmelgarn, Shelly Dierking and I have the honor of joining leaders from CIR to help facilitate the all-day interactive session. While many faculty will be attending, the major focus of this educational meeting will be on the residents, both from CIR Hospitals as well as other GME programs, and aligns with the “Educating the Young” mission.
Residents can be change agents for safer, higher quality care. There are now numerous examples across the country of this fact–residents leading important quality and safety initiatives that have reduced risk and raised the quality of care provided–and they have done this work despite internal challenges and long work weeks. Those that have followed our ETY blog for the past two years will remember my post on the work of David Leach, the former CEO for the ACGME (see The Canary in the Coal Mine…). In one of his publications, Dr. Leach shared the most important role of graduate resident physicians was to act as the “moral agent” for their patients. Residents must be the gatekeepers for safe, high quality care–a sentinel on watch for the many unsafe conditions they might encounter while trying to provide optimal patient care, prepared to alert faculty and leadership to these unsafe conditions, and then work with their institutions to find solutions to remove risk from the patient experience. The analogy Dr. Leach used was the canary in the coal mine, taking on the role of guardian and protecting others from harm before it was too late. I loved this “moral agent” concept. It is so simple, yet so important in the quest for safer, higher quality, patient care. In academic medical centers, resident physicians spend more time in the hospital, have more direct contact with patients, and see many more unsafe conditions during days, evenings and weekends than most other caregivers, except possibly nurses. And they do it many times with little, if any, direct supervision. Resident physicians can be those sentinels and serve as excellent change agents for safer care.
We need more conferences like CIR’s QIIQ focused on our next generation of caregivers. Please help spread the word about the conference. Below is some additional background information with the links to register. The third link is the conference brochure which has additional details. We appreciate the support and as always, thank you!!
The one-day conference on How to be a Lead Agent of Change will be held Saturday, April 26th in New York City. Given the importance of the patient experience and the desire for more patient-centered care, the Committee of Interns and Residents conference is meant to empower medical residents to develop and execute high-value care projects in their hospitals and health systems, and better equip them with the competencies they need to work in a rapidly changing delivery system.
To register for this conference, please click here. There will also be a webcast, and people can sign up for that here. The agenda and conference brochure can be found here (this includes logistics on location and timing, as well as goals for the day and additional contact information). Please feel free to share this information, as well as the links to register, with your organization and networks.
*CIR has also been tweeting about the conference with the #QIIQ hashtag. Here is a sample tweet you are more than welcome to share with your followers: What’s your #QIIQ? Join @cirseiu & @EinsteinMed in NYC on 4/26 for the next #QIIQ conference. Register now! bit.ly/qiiq426
Hero – a remarkably brave person; somebody who commits an act of remarkable bravery or who has shown an admirable quality such as great courage or strength of character especially under difficult circumstances; somebody admired.
Carole Hemmelgarn is a hero.
In the video that follows, Carole poignantly shares her daughter Alyssa’s story, and why their family’s loss has been the driving force behind the change Carole is fighting for – the delivery of safer care for all patients and families. Every person lost to preventable medical harm is a tremendous loss. Carole, and other courageous heroes like her, including Patty & David Skolnik, Helen Haskell, Victoria & Armando Nahum and Sorrel King give their time, their heart and their stories so we never forget these unfortunate events are not just statistics.
They are my heroes.
Larry Smith, Vice President of Risk Management at MedStar Health, is a true pioneer – one of a small number of leaders in healthcare who have developed early communication and resolution programs when harm from medical error occurs. Programs like University of Michigan led by Rick Boothman and Susan Anderson, University of Illinois led by Tim McDonald and Nikki Centomani, and MedStar Health led by Larry Smith and Steve Evans have long moved from a “deny and defend” approach to medical errors to one of open and honest communication. These programs have been able to bring closure and healing to all parties involved while using the court system and the long, difficult battles that result where no really wins except maybe the attorneys as a last resort.
This week, Larry recruited not only his own team of insightful and skilled Risk Managers, but also plaintiff attorney, Paul Bekman, Esq., defense attorney, Michael Flynn, Esq., and the Honorable Howard Chasanow, former Maryland Supreme Court Justice and now a full-time mediator, to participate in MedStar Health’s Quality, Safety & Risk Management retreat. It may sound like an unlikely gathering of peers to many, but for Larry, the only way to move towards the “just culture” required of high reliability organizations is to continue to unite those whom often seem disunited.
As the panel of experts shared what really occurs in court rooms in the aftermath of a medical error, all attendees gained a deeper understanding of the complexities inherent to managing a healthcare system. At a time when patients and caregivers are caught up in the pain, uncertainty and fear related to what is often a life-changing event, the medical-legal piece can either remove, or compound, the emotional, physical and financial costs involved. One thing many of the attendees learned was that when a patient forfeits control, and ultimately a say in the final decision of such an intimate and painful event, to a jury of peers with what can be at times an attorney not well-versed or well-intended when it comes to medical-legal matters, additional problems can be created for all involved. Claims filed often cost health systems millions of dollars, and patients many times do not receive what they truly deserve when cases are handed over to the courts. Judge Chasanow was truly inspirational and shared that true healing for all can be found through skillful mediation led by those knowledgeable in the intricacies of medical harm events–especially when led by those who have the patient and family’s best interest as the top priority. He also shared the amazing healing power that can result from two words –“I’m sorry”. When offered in a sincere and meaningful manner, anger and tension seem to dissipate and true progress towards closure and healing through mediation can begin for all.
Moving forward, we have two options:
Or a second option. A few years ago, Transparent Health put together a short trailer for a longer piece of work that sums up another approach to managing medical errors and the harm that can come from them. When harm is managed openly, honestly and with transparency, healing can begin. Here is that short clip:
Healthcare remains at a crossroad. If we are to truly achieve a Culture of Safety and drive towards Zero Harm, we must embrace open and honest communication, practice just culture principles that balance systems and process breakdowns with reckless personal accountability, and follow the wise words of Carole Hemmelgarn who so eloquently said it should always be “Patient first, last and everything in between”.
I have been very fortunate through my career to have met, learned from, and become friends with many patient advocates from across the country. People like Helen Haskell, Patty Skolnik, Linda Kenney, Sorrel King, and Carole Hemmelgarn to name just a few. Their ability and willingness to turn personal loss into a life-long commitment to make care safer and of higher quality is quite inspiring…they are the true heroes of this mission.
The same holds true for Victoria and Armando Nahum who I was so fortunate to meet about two years ago. Over a period of 10 months in 2006, the Nahums had three family members stricken by hospital acquired infections, at three different hospitals in three different states, culminating in the death of their 27-year-old son, Josh. Like the families I mentioned above, they also turned their own personal loss into a crusade to reduce and hopefully eliminate hospital acquired infections by starting the Safe Care Campaign.
Last week at the Quality Colloquium, I moderated a morning long session on quality and safety at the bedside. Because patient partnership is a critical piece to any quality and safety mission, I asked Victoria and Rosemary Gibson, author and healthcare advocate, to be part of the panel and lead a patient partnership discussion with the audience. Both Victoria and Rosemary (as usual) were outstanding speakers, and had the audience fully engaged. However, during Victoria’s presentation, something truly special happened. Victoria shared the following video that she and her husband Armando created. Lke most in the auditorium, I had not seen the film before. The video delivered its message that morning in a unique and quite remarkable manner. Few times have I seen an audience as captivated at a medical meeting as they were last Thursday while we watched the Nahum’s two-minute film. The audience burst into spontaneous applause at the conclusion of the video, even though Victoria was still in the middle of her talk. It was an inspiring moment. The Nahum’s creativity and message captured us all that morning. Take a look for yourself:
The Nahum’s courage is powerful, and their message so very important if we are to escalate the fight to reduce risk and improve the quality of care providing to our patients. We need a greater sense of urgency around all of these efforts, especially at a time in the evolution of healthcare when competing agendas vie for attention and funding. Like Don Berwick, Carolyn Clancy and other healthcare quality and safety leaders who have inspired us to do better, patient advocates like Victoria, Rosemary, Helen, Patty, LInda and Sorrel are leaders who inspire us with their passion and commitment to help us get it right. It is encouraging to see them with a seat at the hospital conference or board room, as keynote speakers at national conferences, and included in hospital quality and safety improvement committees. How we thought we could do this important work without them still befuddles me.