Dear Dr. P
Updated: Feb 20, 2021
Dear Dr. P,
Ten months ago, I first met you on a telehealth visit, as I was referred to your care by one of my favorite physicians, electrophysiologist Dr. Z. I needed a cardiologist to follow my case after having undergone a robotic completion pericardiectomy in March. At the time of this first visit with you, I really didn’t need much of anything, just to establish care and continued prescription for a diuretic to use as needed. At the time of the visit, you seemed confused as to why I would continue to need a diuretic if all of the pericardium was removed from around my heart. While I understood the sentiment, I assured you that while I didn’t have the specific answer to that question, I did know that it was common in the literature for post-pericardiectomy patients to improve greatly in their heart failure symptoms, however, many still continue to have very minimal symptoms which medications control without limiting overall function.
After this conversation, in a visit with Dr. Z, I shared my concern and frustration that I could never seem to find a physician with any experience or knowledge in constrictive pericarditis. I asked Dr. Z, “Is it too much to ask that my doctor who is tasked with managing my condition know more about it than I do?” Dr. Z laughed and assured me that my condition was one whole sentence in one textbook in any cardiologist’s educational past, so no one would really know very much about it. While this is true, how hard would it be for a physician to perform their due diligence on a more rare patient diagnosis and do a little pubmed lookup to familiarize themselves with the most recent assessment, treatment, prognosis, and long term management before seeing the patient with the condition they know little to nothing about? Or, if time was short before the visit, after the visit, conduct that search on whatever is perplexing (the etiology for the necessity of on-going diuretic use post pericardiectomy), and then share that information with the patient at the next visit or via a portal message. As a physical therapist myself, I most certainly would bring myself up to speed on a particular diagnosis if it were rare or I had not treated it in a while prior to seeing the patient. This is just a bare minimum expectation of what every healthcare provider should do in order to provide a high quality care experience and build the patient’s confidence that the provider is knowledgeable about their condition to trust their treatment recommendations.
So you should know, Dr. P, that the reason for the necessity of on-going diuretic use post pericardiectomy can likely be explained by heart failure literature comparing patients’ status pre and post LVAD device implantation, as this is a great example of a picture of treated heart failure. Does the heart remodel completely or partially after effective treatment for heart failure? The answer is that some heart cells can remodel back to “normal” condition, as they were prior to severe heart failure, while other types of heart cells cannot. This would explain how most symptoms are resolved post pericardiectomy, while some like fluid retention, are not completely resolved.
Fast forward to this January. I so appreciated your quick response when my severe heart failure symptoms suddenly returned. You appropriately ordered lab tests, chest X-ray, MRI, and an in-person visit. Unfortunately, my symptoms took such a nosedive, that even these efforts were not fast enough. As you know, I was transferred from my local hospital to Aurora St. Luke’s that Saturday, so that I could get all of the testing expedited, as my chest pain and shortness of breath were out of control despite nitro and oxygen. Walking, talking, eating, drinking, and even breathing were becoming difficult or impossible at times.
It took a few days in the hospital to get all of the testing done. You visited me each morning, reiterating the plans for testing. I didn’t tell you until after the MRI and echo results came back showing thickening and wall motion changes at the base of my heart, that I had been in conversation with my heart surgeon in Texas about whether there might be adhesions or scar tissue causing my symptoms, and if he could help me once again. You seemed perplexed about my case. However, once I shared with you that I was in contact with my heart surgeon and he was willing to help me surgically if necessary, that I was finally able to convince you that a heart cath was necessary to measure the hemodynamics (pressures) within my heart to see if constriction was indeed the reason for my worsening symptoms. I discussed with you that a right heart cath would not be adequate, but rather a right and left heart cath with fluid or exercise challenge was necessary historically for physicians to see elevated pressures (on the basis of 3 prior heart caths requiring a fluid or exercise challenge at Mayo Clinic in the past 2 years) and evidence of constriction. I expressed concern that the correct type of cath be done, so I would not have to repeat such an invasive test in order to get the surgery I likely needed. I also shared these precise concerns with the interventional cardiologist who was performing the cath. You both nodded your heads like you agreed, but now I realize you were just reflexively nodding your heads as you completely tuned out my concerns.
The right heart cath was performed, without a real fluid challenge. Dr. P, you of all people should know when reading my extensive heart history and speaking to me in person, that I am not an idiot when it comes to knowledge about my condition, testing for my condition, and surgeries for my condition. This was my third time with these very same symptoms. But, obviously you have a very low view of your patients, assuming there’s no possible way we could understand such advanced heart topics such as the difference between diastolic and systolic heart failure, restrictive and constrictive heart disease, and right and left heart caths with and without a fluid or exercise challenge. But Dr. P, in case it is not yet obvious to you, this patient understands these concepts. Not enough to be a cardiologist, no. But enough to be my own effective patient advocate? YES!
Despite my best efforts to beg each of you to perform the correct test, you didn’t. I was given a right heart cath that showed equivocal numbers at rest. Not enough to convince anyone to perform a large surgery. And so, without further ado, you discharged me to home without any further care or treatment recommendations. Without a diagnosis. Nothing. I waited an hour for you to come to talk to me in person, during which time you may recall I asked you why you did not perform the correct heart cath that would show the elevated pressures my heart surgeon was looking for. You mumbled. You avoided eye contact. You tried to defend yourself by saying a fluid challenge was performed. I immediately informed you as to the lack of a dual set of numbers during the cath, one done prior to fluid challenge, the other after a .6-1 liter bolus of fluid would have been administered on the table during the cath, and of course, none of that was done in my case. When you said, “Well, Dr. __ should do the surgery anyway, why does he need the elevated numbers?” I thought it meant you realized your mistake and your felt the least bit remorseful. That’s how I took your sheepish response and inability to maintain eye contact with me as I explained the ramifications of your failure to order the correct test, as I would now need to travel to Dallas on a commercial flight alone, without any luggage for my clothing, since I now had a 10 pound lifting restriction. And now they would likely have to re-do the heart cath in Texas since you didn’t perform the correct test, despite me informing both you and the interventional cardiologist about what test would adequately demonstrate the elevated pressures.
Fast forward a week or two. Another right and left heart cath with exercise challenge did have to be re-done in Texas, literally 4 days after the first heart cath in Wisconsin. Both through the same vein in my groin. And yes, my pressures during exercise were Off. The. Charts. So yes, Dr. __ did the robotic surgery to remove scar tissue impinging my pulmonary veins and removing the adhesions that had shifted the position of my heart in my chest. And yes, my symptoms were gone. So I messaged you, Dr. P. I sent a synopsis of the surgical report. And then I asked when I should schedule with you, my cardiologist, for a follow-up post-surgery. One whole week passed, with no answer. Even my heart surgeon said he would call you and talk to you during my post op visit with him prior to leaving Texas, but I told him, I didn’t know if you would still be my doctor. Which was strange, since you were the one who had made the mistake.
So I messaged you again via the portal. I responded to something you had told me in the middle of the week I was an in-patient at your hospital. You had told me, “You brought this on yourself. You never should have gotten the ablation.” At the time, I let these comments roll off my back. I learned long ago that in the midst of a crisis, you can only battle what is necessary to get the action you imminently need. These comments were a battle for another day, after my life was saved. This was the day. I messaged you my response to your comments. I shared the history of the arrhythmia starting unexpectedly during my last pregnancy. I had no previous heart issues and no elevated heart risks prior to that pregnancy. So, was that my fault? Or was it when I did have the arrhythmia, and it didn’t disappear after my pregnancy was over, and then I began having transient ischemic attacks and had a mild stroke effectively ending my ability to run marathons, was THAT my fault? Or was it when no neurologist would acknowledge the strokes and TIAs, so they refused to give me Eliquis to prevent more of them. Was THAT my fault? Or when I began getting arrhythmic events and TIAs in the middle of treating my own patients in my clinic- was THAT my fault? Because that is when I sought out an ablation, due to arrhythmia symptoms that were now threatening my already narrowed life to working and then resting in my air conditioned home. No playing with the kids, no working out, not even taking a walk outside, having to sit on the floor in the middle of grocery shopping to avoid passing out, waiting for another arrhythmic episode to resolve. Not to mention the TIAs coming every other week. You’re so right, Dr. P. I had no legit reason to ask for that heart ablation. I should have just enjoyed life in bed as a 40 year old vegetable on disability, no longer able to be a physical therapist, and continuing to not be able to be a functioning mom to my kids.
I spent months studying all of the research surrounding an SA node ablation. I knew the heart ablation had risks. I knew there could be complications. I was aware that I would likely need a pacemaker. But this is how bad my life was at that time, that any of the potential complications were far better than the life I was living. I was willing to take the risk. Even if it killed me, at least my kids would know that their mom didn’t go down without a courageous fight. Something I hoped to teach them via action, not words.
So I had the ablation. And I fought to get Eliquis, and then added the baby aspirin. I got a pacemaker. And then I began to live life again. Over the past 4 years I was able to go back to work in my clinic as a physical therapist, homeschool my kids, coach middle school basketball, and even work out with my kids in the backyard. So yes, Dr. P, this was the life I chose, in between battling now 3 surgeries for constrictive pericarditis, a complication of my heart ablation, and 2 other surgeries for infections from my first open heart surgery for constrictive pericarditis.
To this message your nurse responded back, saying you would call me. But you didn’t. I had to call your office again, after my internist wanted me to see a cardiologist in follow up sooner rather than later. I talked to yet another nurse. She said you would call me. And then you finally did.
During our phone conversation, you said you were surprised that I would still want you as my physician, as you said, “We didn’t seem to work together very well in the hospital.”
I replied, “I thought that by going through this experience with me, ordering the tests, and seeing the results of the testing and the surgery, that you would have learned something that would help us work together better in the future.”
To which you responded, “I didn’t learn anything.”
“In that case, you’re right. I do need to find another cardiologist.” I hung up the phone.
While I appreciated your candor, and I had a follow-up booked with another cardiologist within a couple of hours, your words and deeds didn’t sit well with me. It really bothered me, actually. That a seasoned cardiologist at the age of 73, would get up each morning and go to work, believing that a patient such as myself did not deserve a life-saving surgery. In our phone conversation you had just said, “He shouldn’t have done the surgery. The adhesions will just grow back.”
I had replied, “They might grow back. No one knows what will happen. I’m 44 years old with no co-morbidities, with small children at home. Because the adhesions and scar tissue MIGHT grow back, I shouldn’t have had the surgery?”
Well then, if that is your line of thinking, why have an oncology department in a hospital? Won’t the tumors simply grow back? So why try at all, right?! Wow- we could just get rid of entire hospital departments, and all surgeons. And, of course, in your line of thinking, if someone did some behavior to bring on the cancer, such as a smoker or a tobacco chewer, those patients should just be left to die?
So why, Dr. P, do you get up each morning? Why bother getting out of bed, getting dressed, and driving to work? If the patient’s life no longer matters, what gives your day any meaning at all? If quality of life doesn’t matter and continuing to live is a 44 year old patient asking way too much, why bother adjusting any patient’s cardiac medication or ordering any testing? If patients all bring these things on themselves and whatever they have will likely come back- why even bother putting in a stent, implanting a pacemaker, or doing any cardiac intervention at all? What is the purpose of a cardiologist, or any physician, for that matter?
Clearly the time has come for you to submit your resignation. You have lost any empathy you may have once had for your patients. You have lost the essence of the purpose of your profession. You no longer advocate for the needs of your patient. You have put your own jilted sense of ethics ahead of the needs and desires of your patients. You no longer respect God; you believe you are god. The decision-maker for the life and death of a patient otherwise healthy, productive, and a mother of three children, but no matter. She must die, because she dared to desire to live.
You have the power, you had the power, and you declined to use it for good. And when your actions were questioned and a surgery proved your opinion to be so very wrong, instead of humbly admitting your mistake and desiring to learn and grow from it (hallmarks of a true professional), you chose to double down on your indefensible position. Dr. P as god. So dangerous. So scary.
Dr. P, you not only failed your patient; you failed a fellow healthcare provider. A healthcare provider who recognizes that the attitude you portrayed toward me and my case is likely the attitude you portray to other patients and their cases. A healthcare provider who believes the patient is the center of the care team. A healthcare provider who believes in a duty to serve the patient first and always, ahead of every other possible motivation. A healthcare provider who knows once this duty has been breached, the usefulness for that healthcare provider towards his patients has expired. When you no longer serve the best interests of your patients in all of the decisions that you make, it is in the best interests of your patients that you no longer serve. That when you as a healthcare practitioner believe you have become the judge, the jury, and the executioner, your view of yourself is too exalted to be of any further benefit to any human on Earth.
Patient, Mom, & Physical Therapist
#Patientadvocacy #Patientcenteredcare #DoctorHealThyself
Jill Murphy is a Doctor of Physical Therapy and founder of MotionWorks Physical Therapy and an advocate for patient-centered care. A Christian mom 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 activity with her three children, including walking, biking, throwing the football around, hiking in scenic locales, gardening, playing piano, singing, and coaching a middle school basketball game or two.