Guest Blog: My Patient Safety Journey and a Tribute to Katherine Eileen

This week, I am honored to host a guest post by Dr. Julia Hallisy. Dr. Hallisy is the co-founder of the Empowered Patient Coalition. She writes about her daughter's battle for life and how it formed the basis of her work to advocate for and empower patients.

My daughter lost her life to an incurable cancer. Unfortunately, her journey was made even more challenging by life threatening hospital-acquired infection, misdiagnosis, and significant and permanent loss of lung function from septic shock. My husband and I knew that we were facing a great battle with Kate’s malignancy but we never counted on the ravages of medical error, miscommunication, and medical care that was fragmented and chaotic.

I promised Kate that I would finish the patient education and empowerment work we started together so that others could learn from our experiences and hopefully avoid many of the adverse events we faced. This was the beginning of my patient safety efforts, including the formation of The Empowered Patient Coalition non-profit organization. My patient safety journey has always been inspired by the strength and wisdom of my late daughter, Katherine Eileen. Kate taught us to search for our happiness, to choose to see the good in people, and to treasure every small kindness, every tender mercy – because there were many.  It was a joy to see the world through Kate’s view and even when her spirit was dampened by debilitating illness, she never let her own pain or sense of fear make her immune to the suffering of others.

Empowering patients to be informed and engaged medical consumers is a pressing and challenging goal for all health care organizations. Our organization provides many innovative consumer education materials, including “The Empowered Patient Hospital Guide for Patients and Families”- a free, innovative resource that offers practical information for the public to use in their quest for medical care that is safe, effective, and patient-centered. The goal of the hospital guide is simple – to present the public with practical tools and information to help navigate the often baffling and confusing world of hospital care.

Our current health care system is finally addressing the need for patients to participate in their medical treatment. While I am excited at the progress we are making, I am also concerned that we are changing the rules of the game and asking patients to step up to the plate without giving them the basic knowledge and skills they need to truly be members of the team. I know first-hand what it feels like to realize that you need to play an integral role in your child’s health care, but then struggle at the bedside because you don’t know the questions to ask or how to get the help you need. I know what it feels like to watch harm reach my child because I was not able to be an effective advocate. I work to share my hard-won lessons so others coming behind me have an easier journey. There is no reason for others to keep doing it the hard way.

When I arrived at my fork in the road and had to decide between a lifetime of anger and sadness and a path of advocacy in honor of Kate’s memory, there was no other choice but to choose Kate’s way. So, every day I work in patient safety efforts because I envision a health care system that will be able to prevent so many of Kate’s struggles, one that will support families when adverse events happen, and one that will include patients and advocates as valuable members of the health care team.

Thank you, Dr. Hallisy, for your courage and for your inspiring work. 

Are you a patient advocate? I would love to speak with you and to feature your story. Please use the comment below or contact me.