The Patient Wish List

Since undergoing a double-lung transplant at The Johns Hopkins Hospital in December 2011, Podge Reed Jr. has had four medical admissions, two surgical admissions, eight outpatient procedures requiring anesthesia, more than 100 outpatient appointments, and 700 labs and other tests. He's amassed enough experiences with the health care system to write a book. So far, though, he’s mostly kept it to two letters, totaling 12 pages, to our patient relations office, detailing opportunities for improvement.

So when our hospital hosted an employee town hall meeting about patient-centered care, Reed was a natural choice to sit on a panel. Reed, a member of the hospital's Patient and Family Advisory Council, explained that he has been very pleased overall with the care he has received, and he says he gave us high marks on the surveys sent following his visits. Still, he wanted to share his feedback — advising, for instance, to turn off the TV monitor at night, give patients a bathrobe and avoid late-night blood draws when possible, or at least explain why they're needed.

Health care professionals need to be attuned to the subtle things that can color a patient's experience, as well as the fact that all hospital staff members are part of that experience, he pointed out. While hospitals focus on national patient experience surveys, what matters to him is whether we do something with the feedback that patients provide. That is a major way to demonstrate a commitment to partnering with patients, he said.

After the meeting, I asked our patient relations director, Jane Hill: What are the most common pieces of feedback that we hear when patients send us letters or complete their surveys? She agreed to work with her team to put together a top 10 list, based on both compliments and grievances that the hospital receives.

Written in the patient's voice, the items on this list show that "patients assume high-quality clinical care and safety," says Lisa Allen, chief patient experience officer for Johns Hopkins Medicine. "They are asking us to treat them as a person, with caring and empathy."

The list is not intended to be revelatory, nor is it the be-all, end-all. Rather, it's a conversation starter, and we welcome your feedback.

Here goes:

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  1. Let me sleep. Do not take vitals throughout the night or draw blood between 10 p.m. and 6 a.m. unless it is critical. If it is critical, please make sure I understand. My sleep helps me recover and feel better.
  2. Keep the noise levels down at the nurses' station. This is so important — especially at night when my sleep is needed. Turn off the TV, radio, computer screen, etc., at night in my room so there is not a glare or noise that can disturb my sleep.
  3. Don't lose my personal belongings. Take an inventory and label everything with my name and medical record number so my personal belongings do not get misplaced. These belongings are an extension of me and make me feel more at ease. Taking care of my stuff feels like you are taking care of me.
  4. Knock on the door before entering. This shows respect for me as an individual and my privacy. Introduce yourself to me and shake hands or make eye contact when you do this. Call me by my preferred name (formal or first name).
  5. Please keep my whiteboard current and up to date. It gives me a quick reference of who is caring for me and my daily plan. Provide a notebook at the bedside so I can keep all my important papers and cards from my health care team and other staff members in one place. Please make sure my name and my location — nursing unit, room number and room phone — are listed on the front.
  6. Update me and my family if you notice changes in my condition. Keep communication open. Please keep me informed of delays — it lessens my anxiety during an already stressful time.
  7. Keep my room clean. Mop the floors every day, wipe surfaces to prevent the spread of germs, empty my wastebasket and keep my bathroom really clean so it even smells clean. If you are my housekeeper, please introduce yourself to me and say hello. I like to know who is taking care of me.
  8. Listen to me and engage me in my care. Use plain language and make sure I understand my plan of care.
  9. Please orient me to my room and the hospital so I know where important things are located, how to work the television, how to order food and when my linens may be changed. I am a guest here and don't know these things, yet these are important to me.
  10. Please maintain professionalism in ALL areas of the hospital. While you may be on your break, you are still a hospital employee and a reflection of the hospital. How I perceive you is often how I perceive the hospital and care that I am receiving.[/themify_box]

If you have experiences from a hospital stay or from working as a health care professional that you think should be included, please share via the comments.

This post first appeared on the U.S. News and World Report Patient Advice blog.

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