My patient experience began in 2003 when my husband, Michael, was diagnosed with auto immune hepatitis which eventually destroyed his liver. After nine years of becoming progressively sicker, he finally had a liver transplant. Complications occurred. He went into cardiac arrest. Forty-five minutes of heroic efforts by his medical team, along with a healthy dose of faith, brought him back to life although he remained in a coma for two weeks.
Days later, a second liver transplant was done which led to more complications: paralysis, kidney failure, lung failure, pneumonia, hospital acquired infection, ICU psychosis, heart problems, skin infections, CMV infection and more. Five months later Michael came home with an open wound the size of a football, and for the next year he was hospitalized two weeks of each month. Now four years after two transplants he is adjusting to a new normal for his life.
Although I was not the patient, I lived through my husband’s experience viscerally and as his sole caregiver. This experience, spanning nine years, left me feeling grateful to all the people who helped Michael survive. I now felt the only place I wanted to work is in healthcare. About two years ago, a doctor at the hospital mentioned The Beryl Institute to me. Knowing of the Beryl Institute opened my mind to a world of possibilities. Because I was honored to receive a scholarship to The Beryl Institute’s Patient Experience Conference this year, the possibilities started to become real. The conference was the perfect place for me!
Day after day, I attended sessions and met people who are also passionate about healthcare. Everyone I spoke with generously shared their experiences and connections. Several evenings a group of us had dinner together. This was a wonderful way to get to know people and build new relationships. All this gave me hope that I could make a living in healthcare doing work that had meaning for me. For years I have worked with organizations to develop work cultures that build strong relationships across the organization and with customers. I now see how I can apply my previous work to hospitals, particularly improving the patient experience. It was The Beryl Institute and Patient Experience Conference that helped me make this connection.
Just to give you an idea of the sessions offered, here are a few I attended:
- Technology which is used to align patient’s and physician’s treatment goals and how together they reach highly personalized decisions;
- Experience based co-design care process to ensure patients are heard and involved in their care;
- Assessing current patient experience efforts and identifying critical steps for improvement
- Empathy, can you teach this?
An especially moving experience for me and many others was Ronan Tynan, a Keynote Speaker, who is one of the Irish Tenors. After he spoke about his healthcare experiences, suddenly his rich, beautiful voice filled the auditorium as he sang Halleluiah. The song and his voice captured everyone’s heart. During Michael’s hospitalizations, we spent months listening to songs. The music reduced anxiety, blocked out the hospital noise and relaxed us enough to sleep. We felt the healing power of music.
The Institute is committed to improving the patient experience through collaboration and shared knowledge. Their commitment to this was obvious by the design of the conference that emphasized collaboration and sharing. In addition to fifty sessions, there were Breakfast Table Topics, a Patient Advocacy Community Gathering and a Body of Knowledge overview session to answer participant’s questions.
I left the conference feeling inspired with a broad overview of the patient experience and a better understanding of ways to improve it. I met many caring and knowledgeable people who may support me as I help hospitals improve their patient’s experience. The best way I can contribute to improving patient experience is to support hospitals develop their cultures.
Janice Lee Juvrud is a Company Culture Consultant, Certified Coach, member of Patient Family Advisory Council (PFAC) New York Presbyterian Hospital, Patient Advocacy Committee (PAC) of The Beryl Institute, currently taking a course in Caring Science, Mindful Practice by Dr. Jean Watson and grateful that Michael is alive!