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 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 admirable 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 the work intended 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.
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.
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.
Patient and Family Advisory Councils – The Importance of the Patient Voice in Our Safety and Quality WorkPosted: November 26, 2012
Patient and Family Advisory Councils are forming in many hospitals across the country. Some institutions, like the Dana Farber Cancer Institute and Cincinnati Children’s Hospital have had “Patient Partnership” Council’s in place for over a decade, inviting the patient into healthcare decision-making and strategic planning, setting examples for those just starting the process. Aurora Health in WI, who received AHRQ funding to look at best practices around the formation of a Patient Safety Advisory Council for outpatient medication safety has provided guidelines for all to follow if they so desire to set up their own Patient Advisory Council.
But with many now rushing to engage patients, a few leading patient advocates have become a bit skeptical. Engaging patients is more than just addressing the call from the Institute of Medicine in their September report. It’s more than gathering people in a boardroom, serving lunch and feeling good about ourselves. It’s more than just checking the patient council box when the Joint Commission comes visiting. And it’s more than just asking patients about hospital room colors. It’s about true partnerships that define, and then measure, patient safety and quality improvement outcomes from projects that directly result from the time invested in these types of meetings. When done correctly, these partnerships become powerful and lead to positive changes in a number of areas. The culture of medicine is in transition, and like any industry, changing culture takes time, courage and the ability to take action outside our normal comfort zones.
This week, I had the great pleasure of spending time with a number of leading patient advocates – people who have devoted their careers to helping patients, caregivers and health systems better understand what is needed to lower risk and improve quality in patient care. Many are good friends and have been personal mentors to me through the years. People like Helen Haskell, Carole Hemmelgarn and Patty Skolnik, three remarkable women who continue to share their personal stories of loss so others can learn, and make care safer. People like Rosemary Gibson, Michael Millenson, Sorrel King and Victoria Nahum who have touched us all through their writings, educational materials and collective call for change. They have graciously agreed to help us at MedStar Health better understand and appreciate what terms like patient-partnership, shared decision-making, and transparency really mean to our patients. Their definitions and perspectives can be quite different at times from those I have thought were correct and published in the literature through the years. Many times I think I get it, only to realize that “I don’t know what I don’t know”. Tim McDonald, a good friend, mentor and patient safety leader, always likes to say we can be “unconsciously incompetent” when describing this phenomena.
We all met as a group last week, and the conversation took on a life of its own. With the advocates asking the tough questions, the conversation and discussions evolved organically and led to the open, honest discourse we all know is critical if real change has a chance to occur. Rosemary challenged the leadership in the room to measure our success by striving for the day when every healthcare provider working in our system was one that we as caregivers would refer a family member to – no hidden secrets on who we know is good, and who we would take our loved ones to for care. A second recommendation focused on outcomes data, and how to present it in a meaningful way–in a way that patients could truly understand, and then use it for decision-making. And more than one of our advocates implored us to create educational tools that patients could not only use to guide them through their hospital stay, but also make it clear they were a welcome and engaged part of the care team. Many health systems like MedStar already have different patient educational tools in place, but the group pushed us to think differently and be even more innovative in our approach to patient education.
The day ended with excitement around the different opportunities to create change right in front of us, and in fact, work has already begun on more than one consensus recommendation resulting from the meeting. We all look forward to the continued sharing of ideas with our council members, and graciously thank them for their insight and resolve to push us past our limits in the best interest of our patients.