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Revelations: The view from the other side of a patient care experience

Posted Aug 04 2010 5:08pm

By Christopher Cornue
Those of us in healthcare rarely see life through the patient's or family's eyes. Yet there is much we can learn from first-hand experience as patients or their families. When we do experience our healthcare system up front and personal, we walk away with an experience that can change us forever.

Readers of my posts are aware of my decision to leave my hospital CEO position in Colorado at the end of 2009 to return to Chicago and help my wife with her ailing father. As I wrote then, it was a very hard decision, but family comes first.

That situation, which has brought us up close and personal with the healthcare system, ended in early July when my father-in-law, after suffering a stroke in June, succumbed to his multiple ailments. He's at peace now and we are grateful for that, but we miss him dearly.

I know others have written about their own personal healthcare experiences, and I applaud them for their candor. I hope I, too, will help broaden your perspective.

In this posting, I will briefly write about what I saw during those last weeks when my father-in-law was hospital-bound for the final time. At the beginning of the stay, we had primarily negative experiences. But when he died, hospital staff handled the situation in an amazingly personal and positive manner.

During one of my times visiting with my father-in-law during the final weeks of his life, I tweeted for about two hours, commenting about what I experienced during that time in the hospital. It helped me to cope and learn at the same time. I was disappointed in our healthcare system based on experiences at one hospital, during the early part of the final weeks.

Here's one of several examples: A nurse came to the waiting room looking for the family of the patient in room "number x." As it turned out, that was us, but I hadn't been told the room number. When I told her the family name and asked if we were the ones she was looking for, she said she couldn't remember. It was patient "number x," she said and returned to the nurses station. My father-in-law was just a number to her and she didn't seem to care. To this, I tweeted: "Wow - NEVER use just a number for the patient and family ... ALWAYS use the name. How insensitive."

Here are some of the other examples I tweeted about:

  • "Doctors and nurses talking at nurse's station in full earshot,"
  • "Security at front desk unhelpful and rude ... but in the end got me where I needed to go,"
  • "Lead PT was very nice, informative and engaging of patient. Impressed,"
  • "Smiling. Smiling would be nice," and
  • "Waited 3 hours for neurologist & he spent 98 seconds with us. Was very nice and answered questions. They are busy, so not surprised."

Probably nothing was critically wrong, but these experiences do impact a patient and family member's overall impression of an organization and their trust in it. These are very basic and easy things to get right. Yet I was troubled that throughout the majority of the stay, and especially, the time during my visits, family engagement, and relationships were missing.

There were few opportunities offered to engage the family in care. The white-board had outdated information listed on it so we had no idea who was taking care of him, the unit we were on had poor way-finding signage, staff gave us conflicting information about his care and when the physicians would be rounding. Bottom line, family-centered care, where family is involved, informed and engaged is still a struggle, at least in this institution.

While they got the early part of his last few weeks wrong, because they failed to engage the family, make us comfortable with the care, and a few other clinical issues, the overall basic medical and clinical activities and attention to my father-in-law were good. The cardiologist was friendly and informative. One of the nurses was kind and walked me to my father-in-law's room after I had been redirected three times by other nurses to other areas. The neurologist, though not around for long, was informative, engaged and helpful. All these were good signs families want to see.

But the organization truly shined when my father-in-law was transferred to a different unit for the last few days and sadly passed away. What an emotional time for the family, but the nurses, aides, leadership of the unit, social services, chaplain, and volunteers were wonderful. They prepared the room perfectly in anticipation of our arrival and viewing. They took my kids to play bingo with the other patients while my wife, mother-in-law and I spent time with him. The chaplain spent a great deal of time comforting my grieving mother-in-law. They were personal, caring and truly respectful of the family at such a difficult time. I couldn't have been more pleased with the support they provided the family.

So, how can an organization be so good in some areas and so poor in others? Overall, I believe it is because the organization doesn't see the need to focus on the family and the overall patient experience as a compelling driving force for everything it does. Sure, they perform well clinically, and they've received prestigious awards that are displayed prominently throughout the organization, but without the focus on the patient and family experience, they could be far better.

My family will share our concerns with the organization directly and I am hopeful they will listen and work to address these issues as we all do when we receive similar feedback from family--when we are on the "other side" of the experience--working daily to make our hospitals the best they can be.

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