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Readers Write: The Patient Perspective (aka, Who Just Knocked the Floor Out from Under My Feet?)

October 21, 2015 Readers Write 15 Comments

The Patient Perspective (aka, Who Just Knocked the Floor Out from Under My Feet?)
By Teri Thomas


On the plane back from a short vacation in the Caribbean, my throat and head began to ache. It worsened until I suspected strep throat. 

After waiting 30 minutes (in a room with other ill people) at the nearest urgent care, I was curtly informed that my insurance no longer covered my care there. Miserably, I drove to the next closest urgent care while I called my insurance company for guidance. They directed me to their web site and asked me for names of individual physicians. However, I just wanted the nearest place to get a strep test. 

I pulled into the next urgent care lot and gave my insurance company their address. Not covered. Third choice was covered, so I waited in the queue and eventually was swabbed. After an hour or so, they informed me it was negative and sent me home with “Tylenol and rest.” I felt a little ashamed to have wasted their time and resolved to toughen up.

Two days later, my sore throat had worsened. I was spiking fevers over 102 and my headache became the worst in my life. My body ached and shook and the pain made light and normal sounds hard to tolerate. I held my head in my hands while my husband drove me to the ER.

The ER nurse gave me a medication. When I asked her what I it was, she said, “la-la.” I found it strange (I had no idea what la-la was), but since it hurt to talk, I let it be. Then the doctor came in and asked me what pain medication I was given. I was embarrassed — all I knew was that the nurse called it la-la. Strangely, he seemed OK with that and he didn’t choose to clarify or comment (it was Dilaudid). They drew blood and did a spinal tap, suspecting meningitis. Things began to move around me, giving me the feeling of being an object instead of a person.

They admitted me to the hospital, bundling me in blankets for chills and medicating the pain, while trying to figure out what my illness was. Each doctor gave me a different diagnosis, often confidently. The epidemiologist said, “It’s dengue.” I had chest x-rays and was told pneumonia. The next doctor said I did not have pneumonia. 

My husband and I wanted the doctors to talk with each other. It didn’t appear that they did, as my husband or I had to inform each doctor about what the others had said. The neurologist asked me questions, but never shared his conclusions. I had to painfully recount the course of my illness to him and the others.

Respiratory therapy was a lifeline because they stayed in the room enough for me to be sure I knew who they were. A curious thing to me was the feeling that I existed “in part” to the various specialists. I was a CNS, or pair of lungs, or a Caribbean vacation. 

Some of the doctors seemed to go as fast as they could in their questions. I felt like a speed bump in their race to their next (maybe more important?) patient. As a patient taking pain medication, it was difficult for me to keep up with them, and since I didn’t have time to prepare for a new visitor (they were a surprise), I gave regretfully jumbled and incomplete information. 

After explaining my history and situation for the third time, I hand wrote the timing, sequence of events, and main symptoms on a piece of paper for new physicians or providers to read. It seemed strange that they didn’t seem to want to read it.

It meant a lot to have someone look me in the eyes.

My attending was a foreign-born hospitalist who directed his dialogue to my husband as if I weren’t there. Being a fairly assertive person, I asked him to please include me. With his mouth, he said, "What can I do for you?" yet his eyes and body language said, "You are wasting my time." 

After being denied by nursing, I asked him for the results of my labs and he said he couldn’t do that. He then asked which ones specifically, and only then verbally answered for those specific tests I could think of the top of my head. A printout or online access would have been much better. Not getting information about my own body was incredibly frustrating. It felt disrespectful, as this was happening to ME.

There was a big sign directly in front of my bed that said, "Medications, always ask– explanation, dosage, side effects." Not once did a doctor or nurse ever offer side effects or dosage information. During times of decent pain control, I found the sign humorous.

In writing this, I struggled to find the best word to sum up how the admission felt. Words that come to mind include humiliating, confusing, and castrating (in the sense of taking away one’s strength). I was a strong, educated, independent woman, used to being on top of things (and directing others) with a solid understanding of healthcare, medical terminology, and hospital operations. Suddenly, I had no control over my schedule, no idea who or what was coming next, was highly vulnerable due to pain and pain medications, and I was afraid — something painful and strange was going on in my body. 

My toilet was set with a plastic catcher to measure my urination, but it sat there overflowing because nobody emptied it. There was a white board in my room with some basic information (e.g. name of my nurse), but it was often incorrect. The pain meds made it hard to track what was going on, yet I seemed to be the owner of communicating my situation to all of the changing players around me. I started taking my own notes in a notebook to ensure I was telling people the correct medications. 

The alarms, blood pressure cuff squeezes, and noise outside my room meant I slept fitfully at best. When I did sleep, I had intense nightmares that caused me to wake in an utter panic. Maybe from my mystery illness, maybe from the medications. Either way, it was intense, and I was grabbing for any sense of control or understanding that I could. 

I was reaching for blocks of reassurances (seeing my labs directly, seeing my problem list or diagnosis notes, being told what or who was coming up and when). Simply hearing my care team collaborate and come to me informed and with a unified hypothesis would have made an enormous difference.

Eventually my blood work showed I was stabilizing. The pain began to subside enough that I — knowing the risks of hospital-acquired infections — asked to go home and recover there. I was told a few weeks after discharge that two blood tests were negative for dengue fever, so I never did find out a definitive diagnosis. I got a copy of my H&P and discharge summary and found it humorous to see how little useful information was included, yet there were numerous references to how pleasant I was (surprising, as I was in terrible pain and struggling to be pleasant, but also not very relevant). 

It certainly could have gone better, and I’m sure for some patients, it does. I can almost hear the comments, “My patients don’t want their lab information; it would just confuse them.” Fair enough. Each patient is different. However what they have in common is a desire to feel respected and listened to. 

If folks are interested, I’m happy to post what happened after that—the experience with post-hospital care coordination, billing, how this relates to HCHAPS, as well as concrete suggestions and lessons learned. Do let me know. Having worked in healthcare for 25 years, this experience has energized me to continue to try to make things better. 

Teri Thomas is vice president of Epic Systems of Verona, Wi.

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Currently there are "15 comments" on this Article:

  1. “I got a copy of my H&P and discharge summary and found it humorous to see how little useful information was included”

    Was this an Epic chart? As a VP at that company, perhaps your unpleasant and unfortunate experiences will lead you to explore the connection between your statement I have quoted (as well as various other aspects of your care) and the EMR.

  2. I would love to hear what happened after your discharge if you would care to share.
    I have had a similar experience in the past, I broke my back, went to the ER and the 1st Xray didn’t show it because of “bad software.” I was admitted to the hospital and had reactions to a bunch of the meds that were given to me while on pain medication that had me in and out of consciousness … In my case, there was 0 follow-up from the hospital so I took it upon myself to find a good ortho doctor that I trusted.
    Thanks for sharing

  3. Unfortunately, I find this is a typical story I the world of healthcare today. Instead of where did we go wrong, when do we begin getting it right?

  4. Nothing you wrote surprises me – or others who have been forced to consume healthcare for serious conditions…especially chronic ones where the frustration keeps building. You are a VP of the major HIS company running these hospitals. Perhaps you and others at your company need to better understand h/c from a patient and physician perspective. My Epic which I can access is useless unless I want to go and view lab results from annual physical. The history is incorrect, they cannot keep the meds updated no matter how many times I review with physician. As for discharge instructions – you should see the doozey ones I received from an Epic hospital because your software could not accommodate having two surgeons operate and provide discharge instructions at the same time, under one anesthesia. The drive-you-crazy cannot get even Epic physician offices/surgical centers to actually accurately share information. Coordinating my care between two specialists? I am lucky – their buildings are next to each other so I walk back and forth to their offices to make certain they are coordinating my care.
    Bottom line – software is written in a vacuum….far from the real workflow of medicine. And those physicians are impacted, too. Instead of green college graduates, maybe require experienced clinicians and some patients with veteran experience to help out. I have yet to see my care better coordinated. And with the recent illness and death of my father – I had to hire a care coordinator to help me with his care.

  5. I appreciate you sharing your experience as a patient. You have a unique opportunity to educate and to influence your company to develop products that will encourage documentation accuracy and better coordination of care.

  6. I too have been in healthcare IT for 20+ years and the bottom line is all the technology in the world can’t help if clinicians don’t interact with each other and treat patients as human beings. I wish this were the exception, but in my experience with my own doctors and with my Mothers illness and death, I find it’s pretty much the rule. I’d be very interested to hear what happened next and appreciate you taking the time to share.

  7. Healthcare is one of the few remaining industries that has the suppliers versus the consumers in control. Regrettably, in this current wave of change, the suppliers (providers) are doubling down on their past practices, i.e., attempting to build monolithic systems and suppress information interoperability. This is 180 degrees opposite the rest of the economy which understands the consumer as paramount and the need to exchange information. Further regrets, the major IT suppliers are also doubling down on the past business model which enables this behavior. Yes, we may see a few meet to exchange information in a cartel-like way, but not take on the universal interoperability that the public wants.

  8. “My attending was a foreign-born hospitalist..” And this is relevant, why? I am constantly amazed that a professional businessperson will say something like this. We don’t call out “my attending was a white man born in St. Louis..” Does the culture in your workplace make it okay to define people not like you in this manner? Maybe that’s part of the problem at Epic and why we are still having discussions about a lack of communication between existing healthcare systems. After all, culture is driven from the top down.

  9. Mrs. Thomas offers a personal story of confounded expectations. Presumably her early experiences with her providers years ago had been consistently well handled, and her needs were attended to with reasonable speed. Yet more recently she finds herself in a relationship where:

    – Frontline caregivers are not particularly helpful. Don’t offer a course of action to alleviate the problem. Hand her from person to person whom demonstrates a similarly low degree of helpfulness.

    – Higher-level caregivers are arrogant, don’t address her needs very directly, and have short-term engagement with her without seeing things through.

    – If her problem is going to be identified, it’s going to take a while.

    – If that problem is going to be fixed, it will take far longer

    While this is commentary on her experience with getting direct care from a healthcare organization, it is also an apt metaphor for my organization’s experience in getting support from her organization in recent years. It profoundly disappoints me from my memories of better care in years past. It’s good that this experience has energized her. I hope those energies are directed inward first.

  10. This story has very little to do with the how software is designed and the lack of interoperability. I’m suprised at some of these responses. Software did not create these broken workflows… rather software is a reflection of these broken workflows.

    Speaking from my own patient experiences. I guarantee that Ms Thomas’ patient experience can be experienced at any hospital, regardless if they use a paper-chart, a traditional EMR, or the greatest, most usable, most integrated EMR that we can only dream of.

    Our poor patient experiences are a result of decades of decisions (that we ourselves made) to give up our rights to special interests, allow employers & insurers to control our healthcare, and contradicting policies. (At the same time this country decided to promote healthcare technology adoption and interoperabilty, we enacted policies that have pushed the consolidation of hospital and clinics into monopolies).

    Other industries do favor the consumer and exchange of data. But that is because we as consumers demand it. Collectively if we were as concerned about our health as we are our bank accounts or the ability to purchase something, I am sure we would see the floodgates of information exchange open up and I could see my lab results as easily as I can use my Visa card anywhere in the world to buy something and then look up my balance (and credit score) from an app on my iPhone.

    We should criticize our healthcare system. And it is absolutely fair to criticize HIT that reinforces these business models. HIT still has a long way to go. But it is also naive to think that technology alone will change these business models and dramatically improve the patient experience.

    Without a doubt, those of us working in HIT, should spend more time experiencing first-hand what the patient experience is like today.

  11. All the commentators that are trying to contort the writer’s genuine clinical experiences into a vague attack on Epic should be ashamed of themselves. This article is a personal experience which highlights the genuinely non-IT issue of a lack of physician engagement, cooperation, and frankly competency that is becoming startlingly common in health care. It is a subject that most of us have encountered, and deserves our serious attention.

  12. It’s really refreshing to see a take from an uber-privileged white woman about how much feeling disrespected and unheard really sucks. It’s voices like these that you just don’t hear often enough.

  13. I too have been in healthcare for over 30 years (I am an RN) and in HealthIT for over 20 years. I work for a major competitor of Epic – and want to say Shame on all of you that are trying to blame this on technology and/or Epic! Over the last year, I took care of 2 family members with critical illnesses who were hospitalized in various care settings, (and both eventually passed away) and I can say that Teri’s experience doesn’t even begun to touch the iceberg of the issues around care coordination, communication, patient safety and medical errors that we experienced. In.every.setting.of.care. At one point, I literally forced one doctor to call another doctor on his cell phone (I had the number, he claimed he didn’t know how to reach him) to discuss critical issues with my family member’s care and current status. Afterwards, he actually thanked me for making him do that as he was able to learn valuable information.

    Can we help clinicians by designing HIT that is easy to use and shows pertinent information (if it was even entered in the chart)? You bet. But will this solve some of the major issues we face today in health care – absolutely not. HIT is an enabler, a tool that should support good clinical care. But if all those other things are absent, the best solution in the world won’t prevent many of the issues we experienced.

  14. Great patient experience perspective that we need to hear more off. When enough health care consumers demand the excellence we think we’ve developed over the years, there just might be a more efficient/effective health system. Going to take awhile though.
    Doesn’t matter if the author works for ABC or McDonalds. We all do our jobs to achieve corporate goals. Follow the money is perhaps what has gotten us off track rather than take a great care model and put the dollar control in the consumer hands.
    Let’s not get of track and just appreciate that someone had the courage to write this perspective.
    Teri from Wisconsin thanks for sharing this experience

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