It was an unusual and unexpected hospitalization at Froedtert, affiliated with the Medical College of Wisconsin, in Milwaukee, so maybe I should have expected an unusual experience. But I hadn’t. I had trusted that I was in good hands, being at the state of Wisconsin’s premier academic medical center. But it didn’t go down that way.
I had gone to the ER for fevers, drenching sweats, and a re-occurrence of sternum pain that indicated to me that my osteomyelitis (bone infection) had returned. I was on high doses of strong antibiotics that took me roughly 6 hours a day to infuse into my bloodstream through the PICC line in my arm. I had been feeling better, no sternum pain, but then this happened on a Saturday, no less. With no infectious disease providers available north of Milwaukee, I had no choice but to make the 90 minute trip south to get care.
I was in a good mood in the ER, spending several minutes with my family in the waiting room before I was called back. I had taken 2 showers that day to rid myself of the sweat from the fevers, but at that time, I didn’t have a fever. I assumed I might be hospitalized if they had to switch from the strong antibiotics I was on to another, but only for one night. Less than an hour after being called back to the ER treatment room, all of that changed.
Doctors of all stripes filled my little ER room and told me I had pancytopenia, a reaction of my body to the strong antibiotics I was taking. I had fewer neutrophils, a type of white blood cell that fights infection, in my blood sample than fingers on one hand, along with dangerously low red blood cells and abnormally low platelets. I would not only be hospitalized for days, I would not be able to see my family, because at that time, even the common cold could kill my defenseless body.
It was several days into this hospitalization when I asked a hospitalist when I could begin taking my Eliquis and baby aspirin again, important stroke prophylaxis for someone who still had residual from a mild stroke years earlier. I wanted to make his job easier, because while he may not have known it, without that medicine, I was having significant TIA’s on a regular basis, several times per month. It was prescribed by my electrophysiologist who was in charge of my heart rhythm, and knew my risks for cardio embolism. But here was this hospitalist, suddenly insistent that I could no longer take Eliquis and baby aspirin, because he said so. I was confused. We had discussed the possibility of a bone marrow biopsy, but it seemed unnecessary given I was on strong antibiotics that are clearly linked to pancytopenia in the literature. I had said that I would like a bone marrow biopsy only if several more days had passed and my numbers had not improved since I had discontinued the offending antibiotics that all the doctors agreed was likely causing the drop in cell counts. The infectious disease specialist had thought that was a reasonable position, as did hematology. So why was I not allowed to re-start Eliquis and baby aspirin?
The hospitalist didn’t spend hardly any time discussing. I told him there was no bone marrow biopsy scheduled, and that all of the other specialists on my case had agreed with me that there was no reason why I could not start the Eliquis and baby aspirin again. But this hospitalist vehemently disagreed. Why? I believe he had looked back in my medical record, and had seen that one month earlier I had been admitted to Froedtert for a mild stroke for which I had received tPA. It was rumored that their top neurologist on my case was going to diagnose the mild stroke as a complex migraine. Knowing this was going down, and that I was going to have to stay overnight in the hospital for 2 additional nights to hear this clearly faulty explanation from the neurologist and to have an MRI that I could have in the out-patient setting, I asked to be discharged. It was a waste of time and money that would add nothing to my case, and I had a 5 year old at home crying herself to sleep every night I was gone.
So here I was, confused as to why this hospitalist was falling on his sword over an issue for which I was not even in the hospital. But the very falling on his sword was putting me at critical risk of stroke without Eliquis and aspirin! As the patient, I should have been throwing a tantrum, but instead, I observed the hospitalist walk out of my room in a huff, declaring he was quitting my case. I shrugged my shoulders as he left, wondering what bee had flown up his bonnet. It didn’t even pertain to my current case, so why was he even getting involved?
He returned 20 minutes later to assure me that his supervisor was fine with him quitting my case. I certainly had no objections. After all, I wanted to work with a hospitalist who would support me taking the necessary preventive medicines that I came in with. I was saving them a new problem! How much longer would I be hospitalized if they had a patient with pancytopenia and acute stroke? How tricky would those combined problems be to treat? The doctor should have been thanking me if he only knew how flaky my nervous system could be. But really, he should have been thinking about MY well-being. I was, after all, the patient. What did the patient need? Was there an indication to stop a home med previously prescribed by another physician who did indeed believe the drug was necessary? And it was to prevent a stroke mind you, not an illness or injury that could be easily treated and mitigated. No, it was one that could have deadly or devastating consequences. Whose team was this doctor on?
I didn’t bother me. In fact, I thought nothing of it. That was, until, I had no hospitalist providing in-patient care for the next 24 hours, and the nurses were confused as to whether or not I should take the Eliquis. I spoke to the next doctor who came in, an intern, and he said there was no problem in me re-starting my Eliquis, so I did, from the meds in my purse to avoid the ruckus of that morning. That evening when I asked the nurse for my evening dose of Eliquis, I was again refused. There was no doctor on my case to approve it according to her, even if all of the specialists had told me it was fine to go back on the med. Next, the nurse called security to have them come and confiscate the Eliquis in my purse. So in came security, in front of my kids, to take mommy’s Eliquis that would prevent her from having a stroke. It took requesting a nurse supervisor, and some lengthy discussions to negotiate that I would indeed be re-started on my Eliquis and baby aspirin that night.
This story belies so many of the issues in medicine, from the god complex of the doctors who vehemently defend their paternalist, doctors-first approach to medicine, to the lack of communication and discussion with patients during rounding to allow a critical voice in their care plan, to the most disturbing realization to me, that doctors and nurses somehow believe that patients give up all of their rights to their own bodies once they are declared in-patient. You are treated as an inanimate object, deaf, mute, and dumb, lying helpless and brainless in bed like a little lab rat. A gizmo or gadget for doctors to push and prod, talk and laugh about in their secret and whispered doctors rounding huddles. Critical decisions being made in how to treat, with no attempt to actually involve the patient, who is a doctor herself, in the determination of medications to discontinue, re-start, and trial as well as on-going treatment decision-making.
It is scary medicine to patients, but one for which when challenged, the doctors and hospital have no shame in defending. The meds ordered by mistake, but being forced on patients anyway. The lack of concern or care over giving said patients the wrong medicines, medicines contraindicated that could cause great harm. No care or concern over giving un-needed medicines, or failing to record important treatments like blood transfusions. Removing medicines off the home medicine list for no reason at all other than to defend a neurologist’s honor from a previous hospitalization.
It is time for some reflection, nurses, doctors, hospitals, and administrators. What have we created? What kind of intolerant and indolent beast has medicine become? Who is medicine serving? How have we gotten so far off-track that we would rather walk away from a case than have a rational discussion, or even consult with the cardiologist who ordered the very drug that you feel is so off base? Believing charts that contain lies, and refusing to believe the patient telling their very own story, start to finish, with every detail intact, does this make any sense?
Medicine needs to change. The problem is so large, however, it is difficult to know where to start. But I do have a suggestion, a starting point. In fact, a few of them. One, is to treat in-patients with the same respect as out-patients. You wouldn’t randomly order a drug, send it to the pharmacy, and ask an out-patient to take the new drug with no information on why they are taking it and the risks and benefits of said drug. So why do that in the in-patient setting, and then throw a fit when the patient dares to ask to discuss the new med with you prior to taking it?
Two, ask in-patients their opinion on everything pertaining to their care by actively involving the patient in rounding- right there in the patient’s hospital room. If you involve patients right away, every time, they will kindly and patiently correct errors in their medical history, tell you the allergies they have or failed trials with the medications you are suggesting, remind you of contraindications to said medicines, tell you about procedures and history not contained in the med record you have access to, and give their input and ask questions and bring up concerns about meds, treatment plans, discharge planning, and the like. If we want more efficient and high quality healthcare, why not involve the very patients whose adherence to the correct treatment plan will actively contribute to better outcomes?
Finally, committing to patient-centered care not by marketing strategy, but by education of each clinician and care provider, and then measuring the patient-centeredness of the very care being delivered will ensure that patients are respected and that patients’ voices are heard. This is how we can change healthcare for the better.
Jill Murphy is a Doctor of Physical Therapy and founder of MotionWorks Physical Therapy and an advocate for patient-centered care. A Christian wife and mother of three, she survived a seven year journey through the broken American healthcare system in search for an answer to a heart arrhythmia that appeared during pregnancy. A stroke, open heart surgery for constrictive pericarditis, and several other surgeries later, Jill is telling her story of unfailing resilience in her upcoming book, Doctor Heal Thyself.
Having grown up on a dairy farm 40 minutes from Lambeau Field, Jill is an avid Green Bay Packers and Wisconsin Badgers fan, and is up for any outdoor activity with her husband Tim and three children, including walking, biking, throwing the football around, hiking in scenic locales, gardening, and coaching a middle school basketball game or two.
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