A Year of Hope for One Patient Advocate

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.

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400,000 Gravesites

Arlington_Cemetery_White_GravesOne of the highlights of our Telluride East Patient Safety Summer Camp each year is our trip to Arlington National Cemetery. The cemetery serves as a burial-place for “laying our Nation’s veterans and their family members to rest with dignity and honor.” Numerous daily honors, such as a horse-drawn caisson carrying an American flag draped casket, the firing of three rifle volleys, and the long bugler playing Taps, remind visitors of the service, sacrifice and valor displayed by those in the military protecting our freedoms.

As we walked through the cemetery, it was hard not to grasp the magnitude of the gravesites beside us. Everywhere I looked, white gravestones dotted the landscape. The tombstones seemed to go on forever…in the lower areas of the cemetery close to the main entrance, walking up the hill to Arlington House, or following the signs to the Tomb of the Unknown Soldier. Everywhere I looked there were rows and rows of white tombstones – tens of thousands of them. Six hundred and forty-eight acres of tombstones marking burial sites with little room for much else–the cemetery is pretty much full, and needs more acreage. In fact, they recently chopped down a controversial 2 acres of trees to find a place for our more recent casualties of war. The informational brochure says the cemetery is currently the final resting place for more than 400,000 people.

400,000 people…the irony of that number struck me. That is the same number of patients who die every year due to preventable medical errors according to an article published in September 2013, A New Evidenced-based Estimate of Patient Harms Associated with Hospital Care in The Journal of Patient Safety. Lucian Leape brought some conceptual reality to the medical error crisis years ago by using the analogy of one jumbo jet crashing every day.  All those white tombstones that stretched to the end of the landscape and seemed to go on forever reflected the same number of patients who die each year from things like unnecessary infections, failure to recognize or rescue, medication dosing mistakes. We fill an Arlington Cemetery every year.

We have surpassed one jumbo jet per day. Standing at the top of the hill, looking in all directions…north, south, east, west…seeing the 400,000 gravesites spread out before me, and thinking this could be a preventable medical harm cemetery for just a single year is incomprehensible and unacceptable. What does it require for others to take this national epidemic seriously? When will we see the urgency needed to create meaningful change? It is a visual all Hospital CEO’s and political leaders should be required to experience.

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Palindromes and Patient Safety

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.

Screen Shot 2013-09-22 at 1.54.18 PMLast 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.