My patient experience: at times comforted and other moments abandoned

Let me start this story by telling you the end: I am just fine. For those of you who like me, there is nothing to worry about and all is well. For those of you who don’t like me, sorry to disappoint you, but you’re stuck with me for a while. I’m telling you these […]

Let me start this story by telling you the end: I am just fine. For those of you who like me, there is nothing to worry about and all is well. For those of you who don’t like me, sorry to disappoint you, but you’re stuck with me for a while.

I’m telling you these things—news to make you happy or disappointed, depending on your point of view about me—because this story is about my recent trip to the hospital, an unexpected journey that I wasn’t sure I was going to talk about publicly.

First of all, I didn’t want people calling and fretting and thinking I was suddenly in need of hushed whispers and pats on the head and casseroles. Second of all, I didn’t want people thinking they were finally rid of me and gladly so.   But mostly I wasn’t sure I was going to tell this story because I just didn’t want to make a big deal about it. But in the end, I couldn’t help myself. I decided I learned so much on my little stint on the other side of the healthcare desk that I felt I had to share.

It started as a bit of tachycardia, sadly brought on not by a George Clooney sighting, but rather by some anomaly of life which will likely never be known. As my heart started to race faster and faster over a series of hours, and when it became clear that I couldn’t count as high as my pulse was going, I called 911.

I was in a hotel room and not at home, and that, combined with my inability to stand due to dizziness, rendered me helpless on my own – a situation I am neither used to nor happy to experience. Nevertheless, the paramedics were good-looking (I figured if this was the last sight I was going to see, at least I had that going for me) and the female paramedic in charge of taking care of me was awesome—totally in charge of the situation and, to my amusement, totally in charge of her retinue of male assistants in the process.

Before I get back to the story line, I just want to remind those of you who care that one of my areas of greatest interest in healthcare is how patients engage with and are treated by the healthcare system. Too often the patient is the last person to be thought of in these situations, despite the situation’s inability to occur without their presence.

As I moved from healthcare “expert” to healthcare patient during this experience, I was hyper-aware, almost in an out-of-body experience kind of way, about my patient experience. I was also hyper aware of the 240 beats per minute at which my heart was going at its peak, and how scary and clueless I felt despite all of the knowledge I have from nearly 30 years in the healthcare field and a bunch of cardiology investments.

Looking back, I can only imagine how much worse it would feel for someone who didn’t talk healthcare every day of their lives or even know to call 911.

Anyway, back to my little personal drama. The ambulance ride was surreal but fine and I got the mandatory ebola screen in the ambulance bay before admission. Fortunately my recent visits to Berkeley do not count as an at-risk foreign visit and they put me right in a room and didn’t leave me in the hallway like so many other people. And that’s when my story got interesting, at least to me.

I have lately been paying a lot of attention to the whole concept of hospital patient experience. I am actually running a competition for a client (Avia and HX360) on this very topic at the upcoming HIMSS conference. And thus this became a real world experiment in walking the talk.

My patient experience actually started out pretty well, considering the circumstances. The paramedics and EMTs could not have been more communicative, sensitive and responsive (although the hotel manager’s creepy presence during their treatment process continues to baffle me). The Emergency Room personnel that first night were also wonderful. The nurse assigned to watch over me, a pretty big dude who looked more like an NFL fullback than Florence Nightingale, kept me very up-to-date, brought me a never-ending stream of warm blankets and even complimented me on my admittedly outstanding pedicure when checking out my vitals. He made me feel safe and relatively unafraid, considering.

But when I got moved to a room on the cardiology floor, well, it wasn’t quite the same. By the time I was in a room, I wasn’t feeling quite so out of control and, while tired, I could spend some of my energy concentrating on my experience rather than my situation. And while some of the nurses were incredibly kind and attentive and while, frankly, the food wasn’t bad, here are some of the things that actually happened to me during my hospital experience:

  • I was told to ring the bell if I felt my heart racing. So I did on two occasions. In both of those situations, no one responded to the call bell. Since the nurses had no way of knowing if my reason for ringing was a crisis or not, it was quite discomfiting when I later walked into the hall to get attention by interrupting the very loud discussion the nurses were having about their favorite TV shows at the nursing station. On that occasion I was told, “Oh sorry, we just never hear the bell.” Later, when it happened again, I was told that the nurses are simply too busy to respond to patients calls. True story.
  • I got downright bullied by a doctor who wanted to rush me into procedures that I felt to be unnecessary, premature and excessive. When I questioned his recommendations (based on my own wonderful doctor’s input), he tried to guilt me into compliance and treated me with unbelievable rudeness. He scoffed—literally scoffed—when I told him that if I needed any actual procedures I would see my usual doctor, thank you, who happened to be at a different hospital than where the ambulance took me. He told me that I was being shortsighted and that the services at both places are the same so it made no difference. Lord, I hope that isn’t true.
  • That same doctor, and his retinue of residents, “attended” to me without ever speaking to me, looking me in the eye or asking me how I was feeling.  It was not until I asked the doctor a question did any of them look or talk to me.   It was insulting and made me feel like a diagnosis, not a human. When the chief resident finally spoke to me, she asked me questions that made it clear she had not read my chart, inconveniently located in her hand.
  • In the first room I was put in there was a seriously disturbed person in the next bed who started screaming and swearing at me when, at 3 am, I asked her to turn down the volume on the television. Granted, I was immediately moved (the nurses did hear the lady screaming at me if they couldn’t hear the call bell), but the new room had a very ill person in it who hacked and coughed and spewed lord knows what around the room. If they ever answered the nurse call bell, I would have asked for a Lysol bath. I was pretty sure that I didn’t enter the hospital with ebola, but I was not so sure I’d leave without it.
  • I was told, “don’t worry, since this hospital and that hospital where your doctor works both use Epic, your doctor can get all the records by just signing in.” Hahaha…that’s a good one! These two hospitals are in entirely different health systems and I got to tell my new case manager friends about how Health Information Exchanges work and how the absence of one would mean that I needed a paper copy of my records to take along, thank you. I’m guessing that most patients don’t know that and walk out without their information–a nightmare in the making when you have a lot of follow up to do.
  • Incidentally, I found out that none of the information collected in the hotel room or ambulance made it into my hospital record. None of it. So in other words, the data from the most critical part of the experience was apparently lost since ambulances generally do not transfer clinical detail to hospitals. Fortunately (?) some of this information was recovered eventually since the paramedics had left all of the original EKG readings on the floor of my hotel room. Hello HIPAA. This made me realize how important this connectivity between emergency responders and hospitals really is. I kind of knew that (hence my support of Beyond Lucid Technologies, which helps solve this problem), but the lesson was brought home in a big way through direct experience.
  • I was given test after test without being given results unless I specifically asked for each one. Since each test result was going to determine the next steps about my care, my stay, my life, I was kind of annoyed to have to keep on asking what the hell was going on. I was particularly annoyed when, at midnight, I was carted off to a CT scan that hadn’t been mentioned. OK, uncle, I figured. I’ll have the test, but I did not enjoy being told that I had to figure out how to jam my shoulder down flat despite the fact that a twenty-year old botched shoulder surgery makes that literally impossible. The tech “helping” me with this told me she would just “push my shoulder down” and strap it if need be. That would have sent me right back to the orthopedic wing of the hospital as they frantically searched for the nails falling from my shoulder to the floor, so I firmly suggested we find another way. She was overtly exasperated at the inconvenience.
  • And speaking of Epic, I watched my nurse and doctor argue about the doctor’s mistakenly putting in test orders using the wrong time convention (“regular” time vs. military time), thus accidentally scheduling my test 12 hours after it was supposed to happen. The doctor took serious umbrage with the nurse pointing out the error, even though the nurse was right, and the nurse spent much of the rest of the shift telling me what a jerk the doctor can be. Not too professional all around.
  • And the crowning glory: I just received all of my claims letters notifying me that all of my charges were rejected. The reason: I am no longer covered under the plan. Well that’s exactly right, because they sent the bills to whatever happened to be in their information system rather than to the payer noted on my recently issued new insurance card, which I had produced on demand at least 3 separate times in the first 3 hours of the experience. So now I get to chase that one down.

The good news: I am fine, nothing serious, a weird situation that doesn’t pose a risky medical threat. My regular doctor and his colleague, who  helped me with all the follow up care, were wonderful and responsive and they made sure I got everything I needed quickly and kindly and conveniently. The people at the imaging center were really wonderful.  These aftercare experiences gave me hope that the system can actually work well.

The bad news: the above set of complaints actually represents experiences from two different SF hospitals. I had a bit of a scare later in the week after being discharged from the first facility; that sent me back to a different ER as a “just in case.” So I was pretty bummed out that the odds of having a bad hospital patient experience seemed to be pretty much 100%, at least in my own set of patient experiences.

While I definitely don’t look forward to shopping for an inpatient experience ever again, the odds are that, someday, I will have to; if not for me, then for a family member. I am very aware of how my experience colors my desire to return to these places. To put a finer point on it, if Nordstrom had treated me this way, I would be doing all my shopping at Macys.

As patients become more and more aware of their right and responsibility to take a more active role in their own healthcare experience (and pay a more considerable financial chunk of it out of pocket), we all know how important it is for those who want our healthcare business to treat us like desired customers. Yeah, we may come in to shop by ambulance, and no one really wants to be there in the first place, but considering the odds of each customer having to come back someday, you would like to think the hospitals would pay a bit more attention to ensuring a relatively decent experience.

Hospitals and the clinicians in them can’t guarantee you will be happy or even healthy, but they can make you feel like a person, not a disease; they can be responsive and kind, not indifferent. They can make you feel like they are trying to make you feel better, not uninterested in what you feel at all. And the hospitals that are becoming known for great patient experiences are creating regional and even national brands for themselves that enable them to grow beyond their headquarters to build diverse, enduring businesses that draw people to their doors (and websites).

In his excellent book about patient experience called Service Fanatics, Dr. James Merlino (formerly Chief Patient Experience Officer at the Cleveland Clinic, now President and Chief Medical Officer of Press Ganey’s strategic consulting division) starts with this quote from Maya Angelou:

“I’ve learned that people will forget what you said, people will forget what you did, but people will never forget how you made them feel.”

Truer words were never said.

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