The following comments were made by Julia Hallisy at the Patient Safety Movement summit in Irvine, California January, 2015.
After losing Kate, in the deepest, darkest moments of my despair I took great solace in the groundbreaking Institute of Medicine Report, To Err is Human. An esteemed national group was stating publicly what patient advocates had been trying desperately to convey – that our healthcare system needed across-the-board change to deal with a level of harm that could only be described as a public health emergency.
Patients who had experienced harm cheered from across the country. Surely, the disability and loss of life from unsafe medical care would plummet after the magnitude of the problem had been exposed.
It was easy to feel that change was imminent. But meaningful change remains elusive.
15 years later, patients are still not as safe as they can be. We tend to talk about progress in sepsis by pointing to improved survival rates. What patients know is that being fortunate enough to survive a medical event may still lead to a life forever altered by pain, disability and a profound loss of dignity.
Even as an educated health care provider, I struggled at the bedside to be an effective advocate for my daughter. What I was lacking was a foundation of basic information. I didn’t understand the hospital hierarchy or who to ask for the answers and the help that we needed. I struggled to communicate effectively with my daughter’s providers and to function as a true member of her health care team. I was excluded from participating in rounds- a process that should be interactive and empowering for families.
Patient centered care and patient engagement was non-existent during Kate’s sepsis experience. There was a lack of teamwork and collaboration. Communication was poor – among staff members and between the staff and my family. The people who knew the most about Kate were often excluded from the assessment and treatment planning process.
It is possible to assess patient data in real time and to use electronic screening and integrated technologies to assist in the early detection of patients in distress. And when a critical threshold is reached, to take the appropriate action guided by evidence-based research. This is now in place at the hospital where my daughter was injured but until it is implemented on a larger scale patients remain at risk from the ravages of sepsis.
We did the best we could but we had to learn under extreme stress in the middle of a crisis.
Our efforts at the Empowered Patient Coalition and on our patient education portal at EngagedPatients.org focus on educating and engaging patients, family members and providers. After a decade of caring for a critically ill child and another 15 years of patient safety and advocacy efforts, one thing I know first-hand is that access to even a small amount of information at the right time can completely transform a health care experience.
We cannot expect the public to engage, speak up, or self-mange without education, skills and support. Our coalition has a body of work that is largely created by patients – for patients – because as a Danish proverb tells us “He knows the water best who has waded through it.”
We work to create the resources we wish we had had all those years ago and we need data to show that they lead to greater satisfaction, safer outcomes and reduced cost. We actively reach out to organizations to help us pilot test patient resources and are only now just beginning to hear from hospitals who want to help us make progress in that goal.
Kate always saw the glass as half full. She never once asked us “Why me?” “Why is it my life on the line?” A friend told me many years ago that maybe we’re not seeing it the right way – that maybe those who suffer are actually the chosen ones. And maybe those left behind are the ones chosen to be the instruments of change.
For the last 19 months of of Kate’s life, my family was fortunate enough to work with an oncologist who was one of the original inspirations for the Planetree model. We have experienced care that was truly patient centered and we will continue to work to ensure that others receive that gift as well.
To all healthcare leaders – please, please be fearless, step outside your comfort zone, and keep looking to what is possible instead of what has always been. You must be visionaries in your organization because meaningful change and complacency cannot co-exist. Change must emanate from the highest levels of hospital administration combined with an equally strong effort originating at the bedside.