By Aney Mathew
The reason people who have lost a loved one to medical errors engage in this work is
to make sure what happened to their loved one doesn’t happen again to anyone else,
Carole Hemmelgarn, who lost her 9-year-old daughter, tells Community
Alyssa Hemmelgarn was a beautiful, blond haired, blue-eyed, lively 9-year-old who loved to read, indulge in art and sports. Life was good and things seemed to be going well at the Hemmelgarn home, until one fateful day when Alyssa was diagnosed with ALL — Acute Lymphoblastic Leukaemia. What followed was every parent’s worst nightmare — Alyssa died just 10 days later. What was worse? Her tragic death was the result of preventable, medical error; not one, but a series of medical errors!
Unfortunately, Alyssa’s story is not an isolated incident. According to the World Health Organisation, patient safety is a serious, global public health issue. Even in developed countries as many as one in 10 patients is harmed while receiving hospital care. Beyond the statistics is a poignant, underlying fact — despite medical breakthroughs and advances in medical technology, heartrending stories caused by medical harm continue to persist.
Ten years after Alyssa’s life was brutally snatched away, her memories continue to live on. The story of the devastating event and how it could have been prevented is tirelessly repeated by her mother, Carole Hemmelgarn, to highlight the importance of patient safety. Carole who now works as a Patient and Family Advisory Council Member, visited Qatar earlier this month as part of MedStar (USA), a team invited by the World Innovation Summit for Health (WISH), to conduct the ‘Academy for Emerging Leaders in Patient Safety’, for the benefit of practitioners and students of healthcare.
Soft spoken yet resolute, Carole, a mother of two, spoke on the importance of the patient voice being heard.
“It is difficult to share Alyssa’s story over and over again. It is her story and I am merely the voice delivering her experience and words. It is her way of helping others and her legacy lives on this way. Each time I present it, I lose a piece of myself that I don’t get back. There are times I have to go ‘underground’ to recharge my battery and come out and fight another day. At some point, I am fearful all the pieces will be gone and I will no longer be able to share her story”, admitted Carole holding back tears with difficulty.
“I have been doing this work for about 8 years. I went back to school and got a Master’s degree in Leadership in Patient Safety and a second Master’s in Health Care Ethics because I needed to truly understand the system and the healthcare culture in order to be able to facilitate change. I speak across the US on patient safety to health practitioners. I would rather have my daughter back, than have to do this”, she said, revealing a mother’s heart that still bleeds for her lost daughter.
Despite the emotional demands her tragic circumstances placed on her role, Carole graciously agreed to share with Community her story and why she has made it her life’s mission to represent the patient voice.
Excerpts from an interview:
What got you interested in patient safety?
I got involved with patient safety not because I wanted to, but because I had to. Patient safety was a foreign concept to me, but unfortunately, I was thrown into it blindly and it changed my life forever. Ten years ago, I lost my nine-year-old daughter, Alyssa, to multiple medical errors. So many things went wrong. So educating others is important for me to make sure what happened to my daughter does not happen to any other child and family.
I believe it is important to keep the patient at the centre of care. Care needs to be done with them and not to them or for them. Patients/families are smarter consumers of heath care these days, because of the instant access to information. They need to be active members of the healthcare team.
Can you share what happened to your daughter?
My daughter was diagnosed with leukaemia (ALL – Acute Lymphoblastic Leukaemia). She was diagnosed on a Monday and died 10 days later. You do not die of leukaemia in ten days. It was the medical errors that took her life. All the holes of the Swiss cheese lined up and system errors happened. No provider came in with the intent to harm my daughter, it just happened. She got a hospital acquired infection, she was a classic case of ‘failure to rescue’, she was in an organisation that was hierarchical in nature, lab tests were ordered that were not acted on, and she became septic.
I lost Alyssa 10 years ago, but please realise time is irrelevant to us. Sometimes, it seems like she has only been gone a few days, while at other times I cry realising the many years she has been gone.
It must be difficult to share your experiences and yet you do it. What gives you the strength?
What gives me the strength? I don’t want anyone to lose a loved one and live the life I have to live every day. I will tell you it is a living hell.
The reason people who have lost a loved one to medical errors engage in this work is to make sure what happened to their loved one doesn’t happen again to anyone else. When medical errors transpire, there are four main things patients and families want:
l tell us what happened
l take accountability
l apologise. Say the two little words “I’m sorry”
l tell us how you are going to fix the problem
I believe there is a 5th element — allow us to be part of the solution to fix the problem, if we so desire.
Why is your role as patient advocate important?
It is important to help healthcare providers reconnect the head and the heart. They go through training and somewhere along the way, the patient becomes their symptoms or their disease. Patients are seen as diabetic or autistic, rather than as a person with diabetes or a person with autism. We are people first, not our diseases. The role of the patient advocate is also to represent the patient voice in these conversations to make sure we are keeping the patient at the centre of their care. Healthcare is still hierarchical and the patients/families feel like they are at the bottom of this hierarchy. It is important to make sure they feel empowered to speak up regarding their care.
The moment any parent, sibling, spouse or friend states there is something wrong about their loved one, healthcare providers must stop to enquire about this concern. We as their advocates will see subtle changes in the patients far quicker than lab tests may show or healthcare providers may pick up.
Similarly, if there has been harm, it is important for care providers to connect with the family early and often, in order to have honest conversations. These are not one-time events. They may occur over days, months and even years after the harm event, because the patient/family need to find a place and a space in their head and their hearts to store the information, emotions and feelings. The most important thing is that the conversation does not end until the patient or family says it ends.
This is also important for the care providers because they often blame themselves and healing together can be so powerful. We tend to go into different tribes after the harm has occurred; physicians, nurses, and families and patients. We need to stick together like a village for the learning to take place so the event doesn’t happen again and everyone can heal together.
Do you blame yourself?
I blame myself every day for not saving her life. As parents, we are supposed to protect our children and I failed in that fundamental role. For three years, seven months and twenty-eight days when I woke up every morning, I walked into Alyssa’s room and started the day out by apologising to her. I apologised for not protecting her and saving her. You may wonder why that date is so specific. That’s because it was the first time the organisation where she passed away had the first real conversation with me and apologised for what happened. I told them they needed to apologise to Alyssa because she was the one no longer here. You have no idea how important it is to hear the words “I’m Sorry”. It won’t relieve us of all the guilt we carry, but it can help diminish some of the pain.
If there was one thing you could do differently, what would that be?
I tried speaking up, telling my care team something was wrong and something wasn’t right, but I couldn’t get them to listen. What I would do differently now is, I would have gone to other people to have them come and look at Alyssa with fresh eyes and really hear me on what I noticed. There is a system in place now for patients/families to call for a Rapid Response team that will come to the room and assess a patient. This system was activated after Alyssa died and most organisations have some form of a Rapid Response team now.
I would have pushed harder for answers after she died and not been afraid of rocking the system. No-one should have to wait for three years, seven months and twenty-eight days to get an answer on what happened to their child.
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