When the Patient Experience becomes more Personal

By Stacy Palmer

We have an incredibly passionate community at The Beryl Institute. I know for many that passion has been fueled by personal experiences that drove them to be part of this work. Others have been inspired to join the patient experience movement to spread what they believe is the right thing to do for those we serve. And sometimes while doing this work they have encountered their own life experiences, whether small bumps in the road or larger life-changing events, that reinforced the importance of patient experience and provided new perspective to guide their efforts.

Last year I experienced this firsthand when my daughter, Maya, dislocated and fractured her elbow while cheerleading. She had an emergency reduction surgery the night of the accident to put her elbow back in place and a second surgery a few days later to insert a screw to correct the fracture. All went well, but they decided to keep her overnight to help control her pain and that one night provided an incredible opportunity for reflection and perspective for me as a person who has built a career in patient experience. 

While I work everyday to share stories and practices of how our community works to improve the healthcare experience, I’ve been fortunate to have very few patient or family experiences myself. It’s amazing how your perspective intensifies when you’re sitting inside a hospital room observing the care of a loved one.

A few ideas were reinforced for me that night and, as simple as they are, I believe they are important considerations as we address overall experience.

• Patients (and those who love and care for them) are incredibly vulnerable in a healthcare setting. Maya and I are pretty confident in our regular routines, but we were a bit clueless at the hospital – even with simple things such as ordering meals and turning on the TV. More significantly, we were at the hands of the staff to know what medicines she should have, if her body was reacting as it should to the surgery and how to best control the pain. We had to trust the healthcare team. As a children’s hospital, I must acknowledge they had several things in place that helped Maya feel more comfortable. Volunteers brought her a stuffed lamb and they let her select from a fun collection of super soft blankets to use while there that she could also take home. The hospital even had a Build-a-Bear Workshop on site, which I believe was the key motivator in getting her walking around post-surgery. Any steps, however large or small, an organization can to take to comfort and ease the feeling of vulnerability can have a significant impact.  

• Healthcare workers are human. I think people often place doctors and nurses on pedestals in their minds assuming they should have perfect accuracy, bedside manners and responsiveness. While Maya had some great people caring for her, I was quickly reminded they were human. They had varied levels of experience, focus and relationship skills. As humans they also had their own lives that did have an impact on how they cared for my daughter – maybe stresses at home, conflict with co-workers or even their own health challenges. Regardless of how dedicated and professional, humans make mistakes. I came to appreciate all the checks and balances they implemented to help prevent that. At first I was a little disturbed by the redundant questions like “What is your name? Birthday? Any allergies?” But as I reminded myself the staff were each caring for multiple patients, I learned to appreciate their diligence to make sure everything matched up. I encourage healthcare workers to explain the needs for these steps to patients as this goes a long way in giving them confidence in their healthcare team.

• Patients need advocates. The vulnerability and realization that the staff treating Maya were human reinforced a point that sometimes gets overlooked in healthcare – the important role of the caregiver. A few years ago a co-worker’s husband was in the hospital and she refused to leave his side. As much as she respected the healthcare team caring for him, she realized no one had his best interest at heart as much as she did. She was there to be sure they gave him the right medicines, at the right times and in the right amounts. She kept a journal of his condition and symptoms to share with the doctor, and she was there to be sure he ate, had food choices he liked and any assistance he needed. After being in the hospital with Maya for just one night, I understood her point completely, and not just because Maya was 11. The caregiver can play a vital role in helping ensure quality, safety and experience are what they should be in all care settings.

Maya was lucky that her hospital stay was short and she was quickly on the road to recovery. Being with her that night enriched my perspective and purpose, both as a mom caring for a child and as a professional committed to help make the healthcare experience the best it can be for everyone.

We are currently working on a white paper at the Institute that will share the stories of many patient experience leaders who, in the face of a personal health experience – however large or small, shifted their perspective from PX leader to patient or patient’s family member. If you are willing to share your story, we encourage you to participate in this project. 

Stacy Palmer
Vice President, Strategy and Member Experience
The Beryl Institute