Category: Uncategorized

  • May 20, 2025

    Hospital Hint: Talking with Patient Experience

    Sometimes communication with Patient Experience starts with a hospital survey or a hotline for customer suggestions or complaints, but if you want to provide constructive feedback directly to an individual whose job it is to listen to that feedback, the Patient Experience staff members are hired to do just that. I was told by the head of Patient Experience that the suggestions we make can be sent to those who oversee the relevant department, but whether the suggestions lead to any true, lasting change remains to be seen.

    After a survey I filled out related to an incomplete initial triage exam where the original provider did not even look at my mom’s skin infection which was the presenting condition, followed by a 10 hour wait in the ED waiting room with my mom, followed by being sent home by the ED providers immediately without treatment, I received a phone call essentially explaining why they will not be taking any of my suggestions. I had suggested that the provider who initially examined my mom let her know that it’s unlikely that the doctors will see her wound as something that needs to be treated outside of the outpatient setting and to be given the option of waiting 10 hours in the ED for an attending physician to send you home, or of signing one’s self out (after hearing that you probably will not receive treatment) and stating you are willing to follow up outpatient. It would be great if someone there would even get you scheduled with outpatient on your way out. I truly wonder if it was worth it to fill out the survey and I am disappointed by how much time I spent on the phone calls to then ultimately receive the gently dismissive feedback. If you’re filling out the survey to vent, you might get a call where you feel listened to. If you’re calling to seek change, the survey did not lead to much in our experience. Has a feedback survey led to any changes in your experience?

    From making two lengthy calls to the feedback hotline of our closest hospital I learned that entry-level employees are answering these calls and tend to say things at the end of the call that imply that the reason you called was just to vent. I like to ask my children and my clients, “Are we venting or solving?” when they share a concern with me. From the feedback hotline, I got a very strong “venting but not solving” vibe. Hopefully some of what I said at least leads to some conversations between the powers that be, but it seems that it’s more about herding the venting to one place where it can feel seen and heard and tidily dismissed and forgotten. Have you found this to be the case when you call the feedback hotline? I wonder what it looks like when the feedback data is entered into the computer and is elevated to each department. Does it resemble what the patient or family member said or does it lose meaning steadily as it is whispered down the alley?

    I had the best experience thus far speaking directly with patient experience representatives. They certainly make you feel seen and heard and they tell you where they plan to escalate your feedback to and what they plan to do. Sadly, even two hours meeting in person with the head of Patient Experience, and a number of phone calls, did not seem to lead to any real meaningful results even after 7 months of repeat admissions and a surgeon’s error. However, these individuals do seem to try and occasionally when they seek out information, you get a few, but don’t bother looking for anything clinical from them or any significant direct communication with the medical or surgical team. They can find you some resources and pass along your comments, but as far as any real power to make changes, it does not seem so. I also wonder which one of the many things I said did they choose to pass along? I urge you to ask for clarification on what they are passing on and what they are not.

  • May 19, 2025

    It seems fitting to launch this blog exactly 7 months after my Mom’s initial emergent surgery on October 19, 2024. She was discharged from her second hospital system this evening and we’re home preparing for a new liquid diet and awaiting an elective surgery we hope to schedule in 2-3 months. After almost 7 months of going through what can only be described as “a whole lot,” we were directly transferred to a hospital we hope is better equipped to handle mom’s medically complex case, while remaining truly aware that so many other patients and their families have seen the depths of diagnoses and treatments we hope to never experience.

    This blog is to be a forum for the caregivers, the advocates, the support persons, many of us who find ourselves navigating the sandwich generation. At the moment I find myself just a hop, skip, and a jump ahead of where I was 7 months ago, clueless in terms of how to advocate for my mom in the inpatient hospital system after her first emergent surgery (her only surgery beyond having her wisdom teeth out at age 23 on her first wedding anniversary). As I frantically texted everyone I knew who has ever worked in a hospital, a dear friend’s husband (who was a guiding light more than once when I was at my wit’s end and did not know what move to make next) mentioned to her, “Maybe she doesn’t know how inpatient works,” and my dear friend mentioned that to me.

    It occurred to me that even after I managed to advocate for my dad in a different hospital following quadrupal bypass surgery and through his recovery a few years ago (with reassurance from this same caring couple and hours of support and education by phone from my Amazing cousin who worked for years as an RN with patients recovering from surgery), I still didn’t know how to play the game that is the inpatient hospital system. As a family member and an advocate there was not clear direction in a situation of medical complexity who to go to within the hospital for guidance.

    So in my quest to figure out how inpatient works from one hospital to another and to support each one of you as you seek the best care for your loved ones, I am writing what I know from our experiences thus far and what I hope to find out. It is my wish that you will find helpful information here and that you will share your experiences so that we all learn and grow as advocates for the ones dearest to us. May patient care and outcomes improve as we learn to ask better questions, to seek better answers, and to come alongside those we love to help them to be seen.

    And may we feel seen here.

    Hospital Hint: It seems there’s no such thing as a Patient Advocate in our brief experience with inpatient stays. I look forward to sharing this week what I know so far about those in roles that seem sort of patient-advocate adjacent. They sound like they are in the neighborhood of being supportive of the patient and family, but they have very specific roles with the hospital in mind first and it appears they may be burdened with too many cases to effectively provide desperately needed guidance to patients and their support people.

    These days every staff member from transport to bedside nurse is encouraged to be an advocate, yet, in our experience, no one’s main job was to truly come alongside the patient and family. And those who served in those roles seemed to have very little power, pull, or sway or claimed powerlessness frequently.

    Where my mom was admitted there was plenty of info around on posters about how discharge begins at admission so I asked the bedside nurse on a Sunday evening approximately 24 hours after emergent surgery who the social worker, case worker, discharge planning person was? I didn’t know the term. Her response was that Nothing gets done on the weekends and no one was yet assigned to my mom. I asked if I could have a general phone number where I could leave a message to describe our family’s situation and she wasn’t aware of how I could get that number.

    In this week’s posts I’ll introduce you to our experience with the following positions: Patient Experience, Case Workers, and RN Case Managers