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The Patient Wish List

Physician introducing self to patient

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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Peter Pronovost

One of the world’s leading authorities on patient safety, Peter Pronovost served a the director of the Armstrong Institute, as well as senior vice president for patient safety and quality, at Johns Hopkins Medicine from 2011 until January 2018.

10 thoughts on “The Patient Wish List”

  1. I have to be able to see outside! Keeps me from "fight or flight." Don't encircle me with those curtains! Start hyperventilating. Dr. had to sedate me AFTER surgery.
    Always the same, after 5 surgeries, until 1 great surgeon gave me propofol. NO MORE PROBLEMS. XO

  2. This is not part of the actual hospital stay but make billing simpler. You get bill after bill for months. There is no way to really keep track of it all. As a patient you can't remember every test, x-ray etc that was taken or keep track of the many doctors who come by.

  3. How about a clock with AM and PM designations? When my mother was in the hospital it was hard for her to tell night from day - especially since she was on tube feeding and had nothing to break up the days. Sleeping off and on during the day can disrupt your internal clock, too.

  4. Teaching, teaching, teaching please. Don't assume patients know it all, especially if the person is in the medical field. I had a pediatrician stop what he was saying to add...."your a nurse, you already know that." At the time I'm in the hospital, I am a patient or a daughter, mother, or sister and my brain will work that way first.

  5. Yes, teaching please, especially regarding adhesions. Due to a lack of teaching post-surgery, I developed adhesions 5 1/2 years after surgery. Then 17 months of misdiagnosis with marked worsening of condition >
    hardening and thickening of skin...fibrosis....in what had been a perfect surgical repair. Had I received patient education at discharge, I could have prevented all this from happening. The current standard seems to be to do surgery without providing adhesion education. This needs to change. Without this education, we unwittingly set patients up for a lifetime of suffering. Clearly, our goal is to alleviate suffering, so let's start educating - first ourselves, then our patients. Eve, RN.

  6. Knock on the door and do not forget to ask permission for turning on the lights.... be respectful of the fact that I am a patient, I am in pain, this is a difficult time.

  7. We must have stayed at a different Hopkins because all those things were done regularly and staff and accommodations went above and beyond expectations. Can't say we have a single negative thing to say about anything during our multiple lengthy stays and follow ups. JH is a 5 star hospital. Shouts to WICU and 11W--we love you!

  8. Please tell me your name, occupation, and why you're here. You know my name and when I don't know your name, it creates a power imbalance. Tell me your occupation - I can't tell a nurse from a doctor from a housekeeper in today's hospital. Tell me why yore here. Just to check in at the beginning of the shift or to take me to surgery?

  9. Pingback: 10 Things Parents of Pediatric Patients Want During a Hospital Stay | Josie King Foundation

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