On my journey with cystic fibrosis, I've been admitted to the hospital 10 times or so. And I'm lucky. Many of you with CF have been inpatients even more often.
As a hospital executive, it's always educational to be on the other side of health care, experiencing what you and other patients do. Hospitals are where we go to heal, and yet they often provide us with little chance for uninterrupted, peaceful rest. This is especially true for those of us with CF in the hospital. The battle against lung infections leaves us exhausted as we go through multiple respiratory treatments a day, battle the anxiety of having a PICC line inserted and fight the side effects of steroids.
When I have to go into the hospital, all I want to know is what I need to do to get better and go home. But often, getting to that golden nugget of information requires me to do some long, hard and repetitive mining -- while I am sick! First, I have to recount my medical and physical history, which is massive when you have CF. Also, I have to list the endless medications I take. I've started carrying a printout with me, just in case. Soon the parade of caregivers begins, with each person asking me to brief him or her from the beginning. Have you ever had so many providers come in and out of your room that you start wondering, “Who are these people?”
Well, I have. And as a hospital president, I'm blessed to be in the position to do something about the way we deliver care to patients. I know both firsthand and from many of you that the little things are important. I know that I feel more human, less vulnerable and more motivated to heal faster when I can wear regular clothes as long as possible, instead of being sentenced to days in PJs or a hospital gown. I know that I prefer private rooms and bathrooms, and I want to eat comfort food instead of something institutional. I know that once my IVs are in and oxygen is flowing, I want to walk and see beautiful colors, art and nature instead of lying in a bed or pacing endless hallways of beige.
At my hospital, Adventist HealthCare Shady Grove Medical Center in Rockville, Md., I share with my staff the importance of addressing these quality of life issues to create a more healing climate for our patients. But it's not just aesthetics, is it? More important, both when we are inpatients and every day in our disease management, we want and need to be on the care delivery team.
When I'm in the hospital because of CF, I want my night nurse to come visit before I go to sleep and make a plan with me. Will we leave the lights on? When will we set lines for blood draws?
While I am not the one doing the work, I am the one being worked upon. It is a sacred two-way relationship, and I am a crucial half.
It is important for our caregivers to understand that patients must feel valued. But the burden is not only on the caregivers. As we manage our CF, we must have the courage to ask our care teams to include us, nurture us and value us when it seems that they are not.
Help me be a better administrator. Have you learned that you are a valued part of your CF care team? I want to hear from you. What do you want to see from hospitals and health care? What's important to you?