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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I’m glad you are well now, and I’m sorry to hear about the poor quality of the experience. Clearly, there is much that your team of physicians and the hospital staff need to learn about communication and patient care.
I felt the need to comment on the “bullying” done by the first physician. While he may have bullied you (I don’t know), consider that what may have been occurring was informed consent. You were under his care directly after a life-threatening event. You shouldn’t minimize this aspect; a heart rate of 240 with your associated symptoms (eg, you couldn’t walk) is unquestionably life-threatening. People can and do die of this. The heart is beating too fast to fill appropriately and generate a blood pressure; the heart and brain become ischemic; the cardiac rhythm degenerates into ventricular fibrillation and then cardiac arrest. Or, the heart continues to beat at the fast rate, but with an inadequate blood pressure, leading to an ischemic stroke and a devastating neurological outcome.
I suspect the physician was offering you an electrophysiological procedure to find out why this occurred, and to possibly treat the underlying cause with an ablation, or perhaps, an angiogram to evaluate for arterial blockage. When you declined this, the physician’s belligerent attitude likely reflected his disagreement with your assessment of the risk of the situation. Although communicated poorly, his “bullying” may have been an effort to communicate that you were at a higher level of risk than you appeared to understand. You wanted to leave and follow up later with your doctor as an outpatient. What if this elevated HR occurred again? Perhaps you are in a hotel room and pass out and are unable to call 911? Perhaps this occurs while you are driving, and you pass out, striking a group of school kids in the crosswalk? This all sounds very dramatic and scare-tactic like, but I promise, I have seen this occur first hand; it happens. Your physician had to consider your likely hood of a bad outcome, your potential danger to public health, and yes, his own medical-legal risk for not suggesting aggressive therapy. If you left the hospital without treatment and had a major stroke the next day, would you have blamed the Cardiologist? Many people would, and this reality colors informed-consent discussions.
I did my Emergency Medicine training at the other major academic center in the Bay Area; I have seen my share of arrogant attending physicians, poorly-operating teams of residents, and careless attitudes of health care staff towards patients. Physicians must get better at communicating with patients; this will require training and culture change, which many academic centers are actively working on, but more can and should be done. With that said, consider that one person’s bullying is another person’s medical opinion based on years of experience and training.
Very sorry to hear about your experience but glad everything is all right.
Regarding the continuity of patient data from ambulance > EMR, Epic supposedly has a product (EpicCare Ambulatory Electronic Medical
Record) to address the transfer.
Does anyone know anything about it?
John,
Agreed, there is insightful push back….but I think mostly in the comments section from practicing docs who have to put up with all the “reforms.”
I haven’t carefully assessed the main articles, but I think a majority are from the designers of all these wonderful reforms…and the spokesmen are (as Nortin Hadler has said) “masters of the language of altruism” all the while they are promoting their organizations position at the trough. I am a tad too acerbic, as many are well intentioned.
One reason the medical industry is so far behind others is the often total lack of transparency, in this case, the unwillingness to critique by name. (Can you imagine someone being similarly protective in relation to shabby treatment at a hotel?) It applies across the industry, from invisible pricing policies to all the internal efficacy and outcome studies that are not shared. Until sunlight is allowed in there will be insufficient motive to change.
Well said.
I’m sure everyone agrees with thanking you for your follow-up.
I know everyone wants me to “name names” but I don’t think that’s really the point of the story. The point is that I had two bad experiences in two places and I bet if I went to a third it would be just the same. I also had some good experiences, albeit the minority, from individuals who are inside the system but don’t like it much either. The point, as I see it, is to change training and rounding and the reward system entirely and to see patients as customers who can choose another hospital, as they can choose another coffee shop, but who wish to be loyal to good service, personalization, appropriateness of care, good outcome (however defined) and reasonable cost. If Starbucks can do it, I hope that the medical system can at least come close. And don’t tell me the story about how much more complex medicine is and all that. I don’t buy it. Unkind behavior, dehumanization, lack of empathy, poor technology use (even when the tech is present) or any related thing are not explained by complexity. Lisa
Bobby, that is the most disgusting part of the experience in a nutshell–the dehumanizing of the patient. Lisa
You’re right, of course. I was in the food business and learned long ago that there are few mistakes that can’t be made better by a good attitude, from management and supervisors to the lowest-paid person on the property. I was thinking how easy it would now be to replace call bells and lights with a voice recognition system. One of the kids gave me a second-hand iphone which can take a dictated text message and send it by voice commands. (Although Siri tells me she can’t read Tweets or Facebook posts.) And I’m impressed with that little microphone icon at the right end of many Google search fields — click on that, the thing waits and what you speak appears in the search field.
I guess a hospital program needs to understand old people without dentures…
Here’s one of my favorite stories involving the food business and hospitals.
http://waiterrant.blogspot.com/2005/06/nunc-dimittis-three-priests-walk-into.html
Extremely perceptive and resonant with my experience as i help two parents through their later years. As a journalist and author in the field, I understand a bit about the system; what I can’t grasp is how the naive patient survives it. As my mother grapples with an enduring gift from her last stay at a local hospital — c. Diff –entirely unnecessary– I feel a level of distrust and disgust that is impossible to convey to those who still believe that the doctor is God.
Kurt Vonnegut’s “Player Piano” John.
The more medicine dehumanizes the experience the faster the medical bot will replace uncaring humans. Hell, I can get a machine to treat me with the same void empathy at a third the cost.
Bobby, my wife’s elderly father went through a disgraceful hospital ordeal several months before he died. My wife (nurse) wasn’t there at the time but ended up documenting from patient records and family accounts to discover a similar uncaring self-centered “caregiver” attitude at the facility as is described by Ms. Suennen. A law suit, which seemed the only way to get attention, was off the table, so a well crafted letter, which management allowed her to read to hospital staff, at least created some uncomfortable head hanging in the, “is this how you would want your father treated?” context of the letter.
This goes on all the time but only comes to light when articulate, educated and self assured advocates fight for a stage to expose it, most patients don’t get this same opportunity.
“The patient almost becomes the enemy because we have to expend so much time and energy to document the treatment, there is no time to actually treat the patient, much less treat her like a human being.”
Perry, where in her experience was data entry the cause of what she went through?
I just came across this video. It’s not spam. And at first glance it doesn’t appear to be related to healthcare. But pay attention to the message as it unfolds. And let this post and comments thread play in the background of your mind.
It’s a fifteen-minute adventure into the possibilities of the future. And yes, that also means the future of medicine. An old military slogan applies here — Lead, follow or get out of the way…
http://youtu.be/7Pq-S557XQU
Where’s the “like” button on this thing?
Regardless of the internal and external pressures that modern hospitals face there is simply no excuse for the kind of behaviors that are being demonstrated by both nursing and medical staff in these two hospitals. What is not clear is whether it is limited to one particular area or is more widespread.
The problems with the communication of information should not be ascribed to the electronic health care record. There need to be processes put into place to deal with any deficits posed by the information technology.
I deal with patients who have complex medical issues who can end up being managed by other care givers at short notice. I now advise all of my patients to carry a one page summary of the medical condition with them-whether it be on paper or accessible electronically.
Yes the leaders and managers of the two hospitals concerned have some work to do!
My guess is insurance contracts disrupting the carriage trade.
Poetic justice.
They take Venture Capitalists to the General? Whatever happened to class privilege in this country!
Truth: most patients who have had your same bad hospital experience have not been listened to. They are women, minorities, children, the elderly and anyone who does not have an alphabet-soup of initials like MD, PhD or CEO after their names. This must change! The ‘elite’ doctors have to realize that they have to be able to communicate with all their patients or they will be gone with the dinosaurs. Poor hospital policy IS an issue that doctors must tackle or consumer disruption will take over.
Thank you Lisa Suennen for sharing this important blog!
Wow. I’m glad you’re OK.
Back when my late daughter was ill with cancer, I heard her referred to at one inpatient facility (of 7 ultimately) as “the hepatoma in 4B.” Midway through her illness she suffered a hemorrhagic stroke resulting from a brain met that blew up. I recall one day shortly thereafter at UCLA Medical Center when a doc was doing Rounds, and this large gaggle of whitecoats was assembled around her bed, discussing her in the 3rd person, as “the case,” with none of them making eye contact with her before quickly moving on out and down the hall.
“Teaching Hospital.”
She was really just a specimen.
http://tinyurl.com/ocflbyw
“I don’t see any forces organized to push back on behalf of docs and patients”
Well, that’s the point of this blog, isn’t it? ; )
John,
At my worst fit of frustration at they system, I would never take it out on a patient.
I don’t think anyone here is excusing the behavior, however, this is an indictment of where our system is going. The patient almost becomes the enemy because we have to expend so much time and energy to document the treatment, there is no time to actually treat the patient, much less treat her like a human being.
Hospitals are no different from any other industry struggling with massive changes. They are cutting staff, but demanding more from the ones that are there. Many hospitals are using a lot of part time and locum tenens staffing because they don’t know what their long range manpower needs will be. My wife luckily has many of the long-term employees working at her off-site facility, but the main hospital she works for has a constant turnover and has completely
reshuffled management.
The healthcare field is going through a huge transition now, and you can bet things will get even hairier when ICD-10 comes out.
The one thing Lisa pointed out, which is well worth remembering, that as long as we have choices, we can choose the facilities that we are most comfortable with and that treat us the best all around.
Fascinating. We are like the blind men describing an elephant. This 2300-word cri de coeur strikes me as a challenge to professional conduct but you see it as a problem with government mandates and interventions.
John Ballard,
Agreed…my comments weren’t intended to reference or condone the squabbling and uncivil behavior Dr. Palmer referenced…..only to discuss the unintended systemic consequences from all the reformers….mostly spurred by govt mandates and interventions….but may other entities as well.
Mr. Slobodian, Regulatory reforms are not to blame for uncivil behavior. We may have little control over what happens to us — patients and professionals alike — but we have a great deal of control over how we respond.
Agree completely with your insight: “I think is that we have so much internal and external regulation that we become nervous nellies,”
There are hundreds of entities trying to “reform” what boils down to what happens between doctor and patient…..many are well intentioned, many are driven by selling products and consulting seeking to cash in. In aggregate all these interventions are worsening the state of health care….but they keep promising their “reforms” will yield great improvements just around the corner. Patients are doctors have the least influence and control over these “reforms”.
A sorry state….and I don’t see any forces organized to push back on behalf of docs and patients.
Not every place is similar and there are a lot of holes with the current system, even though, we use computerized and modern equipment still the medical staffs are the ones responsible for every patient’s health.
We need names.
My money is on
SF General for the first trip
UCSF for the second trip
You sound true and authentic to me too. I am embarrassed as to how often we do screw up. The only excuse I think is that we have so much internal and external regulation that we become nervous nellies, unable to relax and enjoy what we are doing. You should go to a Pharmacy and Therapeutics meeting in a hospital and listen to the barrage of complaints from everyone to everyone. Wrong dose, wrong timing, wrong drug, wrong patient. I have walked out of these meetings because of the hostility. We would all do better if we could start some little village clinic in the Congo, without the interminable watching from a thousand eyes.
This is a pretty damning indictment. I want to think it’s atypical, but something tells me it may be just on the rough side of average. I’ve been blessed never to have been a hospital patient, but I have visited several and spent a few shifts as a private-duty caregiver, and this account strikes me as entirely credible.
My guess is that the culture definitely changes from one hospital to the next, and perhaps from shirt to shift within any given hospital. Nights can be worse than days, possibly due to lower staff levels. And I know weekends can be worse than weekdays, partly because labs and imaging that can wait, do wait until Monday. That I have observed more than once.
I have only seen one doctor bullying a patient but that was an exception. I have learned that experienced hospital nurses are worth their weight in silver. Always. And the new computerized room checks are a technological marvel. The first time I saw a nurse using a touch screen responding to the prompts I thought she was playing a video game!
I will be interested to read the comments made here.
Cardiologists are famous for advanced God complexes. If you’re looking for a warm and fuzzy conversation better to look elsewhere. This is somewhat understandable when you stop and think about the clock is ticking nature of what cardiologists do – cases are often life and death – and patients problems are often (but not always) lifestyle driven – but that doesn’t make it feel any better to be on the receiving end of the I am a God why are you speaking to me foolish mortal thing?