The developmental stages of myself as a Patient and Doctor

There are stages in a person’s life: (childhood, adolescence, early adulthood, adulthood, and maturity) just as there are stages in a medical professional’s career:  medical school, residency and fellowship, junior faculty and senior faculty.  I have learned that there are also stages in the journey of chronic illness (diagnosis, knowledge acquisition, and expertise.)  Having had these different stages of my life coincide has taught me powerful lessons both about being a patient and being a doctor---and at various times affected my role in both.

The first time I became a patient, I was in medical school.  My metamorphoses to physician had already begun: I’d received my white coat the first day of medical school, I had my new medical instruments, which I was using on my family.  My family even started to ask me medical questions with some authority.  In the middle of my third year of medical school—the time when you first start working almost exclusively in the hospital---I began my journey as a patient.  While running to attend to a sick patient, I suddenly could not breathe, was admitted to the intensive care unit and was diagnosed with life threatening.

Suddenly, medicine was not so intellectually stimulating….it was frightening.  I was shocked by how sick I had become so quickly and scared about what that meant.  I didn’t know what to do with the gray shades of emotion amongst the black and white shades of science.  Because I was more comfortable with, in fact mesmerized by my new role as a “doctor,” I didn’t question myself or my physicians.  I liked being in the “inner circle”---enjoyed how my physicians spoke to me differently than the other patients.  I often didn’t dare to ask questions.  I didn’t want to challenge authority and I didn’t want the attending physicians to think I didn’t already know the answer.  I was perplexed about my inability to inhale when asthma was supposed to be a disease where people could not exhale.  Instead of thinking, “maybe I don’t have asthma” I just assumed I didn’t know enough about the disease.  We were all uncomfortable and we all just wanted the experience to be over—for this to be an short disruption in my health, a short asthma flare.  We expected me to go back to being a medical student with a very defined role, very clear expectations and a very clear hierarchy.

As I embarked on the second leg of my journey in medical education—internship-- my illness worsened.  The doctor’s didn’t understand why.  They blamed my job, so I took time off.  They intensified my treatment, so, I took nine pills and 3 inhalers a day.  They thought I was deconditioned, so I started going to rehabilitation.  I did everything my doctor’s asked of me—once even being poisoned by the medications when one medication from one doctor interacted with medication prescribed by another doctor.  But I didn’t get better.  And I still didn’t question my physicians.  I assumed they knew more than I did.  I assumed they knew what medicines the others were giving me.  I assumed I shouldn’t ask.  And they assumed the same.   They assumed I knew what they were doing, what medicine interfered with eachother and they expected I would ask them if I had questions. They seemed to have different expectations for me and my illness than other patients—I should handle it better than other patients, I should get better faster….. and I supposed I expected the same. But I didn’t get better, in fact, I got worse.

My visits to the doctor became more and more awkward.  The harder we tried and continued to fail, the more it seemed my doctors blamed me.  I certainly was not in a position to question my attending physicians.  So, I even started to blame myself, feeling like a failure every time I needed to be readmitted to the hospital.  At one point, a doctor accused me of sabotaging my own care.   His dictations referred to me as a  “female health care worker” with a disease that “didn’t act like asthma”- clear suggestions to others reading the medical chart that he thought I had a psychiatric illness called Munchausen’s—a disease where someone intentionally hurts oneself for the sake of attention.  Yet, I was spending huge amounts of time, resources and energy doing everything I could to get better.  I learned then how powerful physicians and their labels can be—so powerful that a physician can cause you to doubt yourself, your body, your feelings.  So powerful that those labels can prevent you from ever getting a true “second opinion.”   I have only recently realized that the discomfort of every medical visit had as much do with my physician as it did with me--the nearly palpable wrestling of the physician with his own inadequacy at diagnosing and treating my disease—a feeling I have felt myself with a challenging patient who continues to deteriorate despite my efforts. 

Before I returned to residency, I sought an opinion outside of my medical system and was given a diagnosis of a metabolic myopathy—a rare disease in children that is not often recognized in adults.  I realized then the importance of diagnosis—naming the animal that haunted me daily and chased away the normalcy of my life as a twenty-something year old.  Some of the treatments used for my asthma had probably made my true illness worse. The fact that I got worse doing everything my doctors asked was not a sign of my personal failure, but the fact that we were treating the wrong disease.  Ironically, that feeling, when I was a medical student “that I can’t take a breath in,” was exactly the problem.  If only I had believed in how I felt, instead of what I thought I knew or what my doctors told me!

So, when I re-entered residency, happy to shift my role from patient to doctor, I committed myself to learning everything I could about my new diagnosis.  I was comfortable with the biomedical approach to illness and I took refuge in it.  I consumed every scientific paper on metabolic myopathies, and went so far as to publish a review on the subject.  Instead of being the trainee with an illness, I became a stand out resident who had managed to write a scientific review paper in a well respected journal.  I had finally experienced professional success instead of failure.  I convinced myself that this knowledge would allow me to overcome my illness. I was certain that I had made a momentous turn in my life as a doctor and in my life as a patient.

But knowledge does not translate into control.  No matter how much I understand or how hard I try, my disease will rear its head at inopportune times.  I have a chronic illness and I have learned that we must co-exist together.  And I have new appreciation of what it means to have a chronic illness.  As a physician, I envisioned chronic illness as a patient who was always sick, a patient with a certain number of hospital admissions, on certain medications, with certain complications, or other “tell-tale” physical signs, a tracheostomy scar, a patient who has been robbed of the usual joys and key events which are supposed to punctuate an adult’s life.

I don’t see myself that way as a patient.  Mostly my life seems completely normal.  I have intermittent episodes of critical illness, but I don’t define myself by those moments.  Like my friends, I enjoy being outdoors, biking, running and swimming.  I work full time.  I do have a port (intravenous access), but I don’t notice it until I wear a dress or a bathing suit.  At work, I only notice that I am different when we talk about billing and insurance or we do a procedure that I have had done on me.  When my colleagues worry about getting a cold because it is inconvenient, I worry about it because it is life threatening. 

But when I am a patient, these differences are amplified.  I realize how different my understanding of disease is than my colleagues.  A disease has diagnostic tests and treatment.  A patient with chronic illness has experiences and knowledge about how a disease acts in them that no physician could ever know.   They have knowledge that could guide our management, suffering that we never acknowledge, experience that we do not tap.  It is these lessons, lessons you will not find in a medical textbook, that I would like to share

One of the most difficult aspects of being a patient is the loss of control you feel at the moments you are already the most frightened and physically vulnerable.  These are countless missed opportunities---chances we have to minimize suffering—that most of us do not know about. 

I have placed countless breathing tubes in patient’s who could not breathe.  I have focused intensely on putting the tube in the right place or using the right medicines.  But I never thought about how scared the patient was just before he or she “went to sleep.”  I rarely offered a hand as consolation.  I had not thought about how terrifying it might be to lay flat just before we place the breathing tube or what it is like to have restraints placed on you in preparation for the procedure.  Yet, as a patient, this is something I fear the most---being asked to lay still when every ounce of my effort in the last few hours has been to breathe, when every cell is my body is trying to “fight.”  And although I try to give heavy doses of medications to sedate, I had no idea what it was like to be awake and aware of being paralyzed, unable to ask for help or more medication.  I have spent hours reliving these moments, and every time I find myself a patient again, I find myself even more fearful of them. 

These moments of suffering occur at almost every juncture of care, not just the life threatening moments.  Every order has implications for a patient’s experience.  I am certain that the intern ordering a bowel regimen is too busy to really consider the impact of which laxative is ordered.  The intern just wants to  report “success” at the next set of rounds—having given no consideration to the patient’s humiliation of having to have an enema, fecal incontinence from too much laxative, or cramping from laxatives that cause gas in the process of working.  I have not warned patients that the computed tomography scan that I ordered will probably be done in the middle of the night, after the outpatients.  So many “little things” can make you suffer less as a patient---using extra towels for your daily bath so you aren’t cold and embarrassed, warming the ear drops that bring a wave of vertigo every time they are dropped into your ear, ordering blood draws by “special heme” so that you don’t have to be stuck for labs when you already have a way to draw blood without a fresh needle stick.     

In addition to suffering, you lose control of almost everything.  When you are a patient, you cannot control when people see you, touch you and talk to you.  You even lose control of the simplest and most intimate of bodily functions—when and how you urinate, or even when your secretions are suctioned from your mouth.   No matter how humble you may otherwise be, you are exposed—physically and emotionally.  Your emotions, feelings and coping skills are disabled by medications that disinhibit you, other times by fatigue or pain.  The care that you need is casually tossed up and down the chain of command, from inexperienced doctors to residents and hopefully to the attending physician.  Countless conversations occur about you but not with you.   The system often makes it impossible for you to feel empowered.

And if you do ask, if you do share these often intimate moments of suffering, there is a chance that no one will listen to you.   The second lesson I have learned is how unwilling we are to involve patient’s in their own care and how often we dismiss their concerns.  Despite the fact that I am “one of their own” and someone who wrote a key paper on my own disease, countless doctors have failed to listen to me as it relates to my care.   I have had physicians who didn’t listen to me when I told them I needed intravenous fluids or needed to have electrolytes supplemented.  Though I am lung specialist, I have had residents-in-training misinterpret laboratory tests that reveal how my lungs are working; and then dismiss me when I tried to explain why or how they misinterpreted it.  They don’t give me “credit” for being a doctor when I am a patient. 

And they don’t give patient’s any credit for their expertise as a patient.   I have spent as much time, and even more money, on my “education” as a patient then I did to become a doctor.  This experience has taught me a lot of little tricks to my illness that the doctors could never anticipate.  I will often stop making urine even though lab tests say that my kidneys are fine.  I will vomit with certain medications which makes my illness critical.  My electrolytes are almost always abnormal, and if the are not fixed in a timely fashion, I will stop breathing.   Although could be categorized as insignificant by the medical field, they are “little” details that are essential to my care.  But, despite my “patient education,”  few physicians respond to my requests to be proactive, or even reactive, to these details

What is perhaps most disturbing to me is that I have failed to listen to patients when I have been their doctor.  I have dismissed the suggestions of a mother of a child with cystic fibrosis, not listened carefully to the suggestions of a diabetic about insulin dosing in them, and once almost missed a diagnosis of disseminated histoplasmosis in a patient with undiagnosed AIDS simply because I didn’t ask the patient, “what do you think is going on?”  Only twice in the last year has any doctor asked me where I thought things were headed or what I might do, and one of those times it was in a healthcare system which had never cared for me.

When we fail to listen to patients and their families about their previous experiences, or even what they are seeing and feeling right now, we put ourselves at risk of making mistakes that could be prevented.  If we cannot prevent those mistakes, then being unwilling or unable to listen makes it impossible to apologize in a meaningful way. True apology implies that you have understood or tried to understand the harm that someone suffered during that mistake.

 Once, after having an allergic reaction to a bee sting, the nurse gave me epinephrine intravenously, instead of in my muscle.  This highly concentrated medication caused ventricular tachycardia, a potentially fatal heart rhythm.  When I told the team about the error, it was adamantly denied.   Hours later, in the intensive care unit, the resident physicians gave me too much potassium chloride, which again caused problems with my heart’s electrical system.  A day later, the team removed my breathing tube after I told them, given my previous experiences, that my muscles would fail and it would need to be put back.  After being put on the breathing machine, as I had expected, I vomited while I was alone in my room while my nurse was on lunch break.   The vomit clogged the breathing tube and I began suffocating on my own vomit.  I tried to call for help, but the call bell system was being repaired.  Gasping for breath, I had to pull the breathing tube out, only to be admonished by the ICU team who hours before had taken the tube out against my wishes.  They were so angry, they didn’t even notice that I was covered in vomit, choking and trying still to catch  my breath.  Despite all of these adverse events, no one from the hospital acknowledged the errors or talked to me about them.  The events were not recorded in my medical record or in our voluntary reporting system and I received no response from our system when I wrote the events down in the Press-Ganey survey, a patient satisfaction survey that had been sent to my house a week after I was discharged.

A year later, after spending hours working on patient safety in our institution, I went to the emergency department again for fever after surgery.  This time, wiser to the dangers of medical care, my husband came with me.   During our fourteen hour stay in the emergency department, I was given medication intended for the patient across the hallway.  The nurse did not double-check my identification band, did not introduce herself and did not respond to either my concerns or my husbands concerns that at least one of the medications was wrong since I was allergic to that medication.  I would stop breathing, witnessed by my husband.

This error could have been prevented by taking our concerns seriously.  Not listening to us caused the error.  And presuming to know what that error meant, without asking us, made the apology from the hospital meaningless.  I doubt the nurse and physician thought about what it was like for me to feel the drug take effect when I knew that it would make me stop breathing, the shear terror of knowing what would happen and being unable to stop it. No one knew what it was like for my husband to leave my side when I stopped breathing to get help, while he watched them breathe for me using a bag, how he felt when he heard the resident say, “that was a good learning point,” or his frustration when he was told minutes later that he would have to wait in the waiting room while they settled me into the ICU.  No one knew what it was like to leave the hospital after this error feeling so completely disappointed by the system in which you work.

But what of this suffering experience is acknowledged by our current health care teams, rushing to get to the next patient, the next OR and the next handoff?  Our behaviors often speak the opposite of what we intend.  When you are the rocked by the constant deflating and re-inflating of the ICU bed, lulled by the constant whir of the ventilator, and intermittently deluded by the sirens of sedatives, the banter, laughter and jokes that you overhear seem so cruel and inconsistent with your experience.  When you are the patient waiting the 86, 400 clicks of the second hand until the doctors return again, hours of time to generate questions, the physical distance placed between you the team while they round, visually present, but just beyond earshot,  minimizes the relevance of your perceptions of suffering, your suggestions for your care, and your concerns for the future.  When you are the patient, restricted visiting hours and contact isolation deny the presence and touch of your family and friends—people who not only may provide you with tremendous comfort but who can be present to assure that your journey through the minefields of the health care system are as safe as possible.

My greatest frustration with the healthcare system is that I need it to save my life, in my non-patient moments I spend a great deal of time trying to contribute to it, but we are failing our patients nonetheless.   As we’ve trained physician-scientists, we have lost the art of being healers.  In our reliance on objective data, physicians have stopped looking at or talking to patients: Doctors who can look at a laboratory test with normal values and then see a patient who is breathing nearly fifty times a minute and conclude that everything is “okay;”  doctors who can walk into a patient’s room, talk to a patient with two legs, and then present the patient to the attending physician as a patient with a “below the knee ampution” because the medical record has transcribed DKA as BKA and they don’t question it.

In a time when modern medicine has extended the life expectancy into the eighties and we have more knowledge and cures than we have ever had, patients and their families are more frustrated.  How can that be?  In our fast paced, technology-driven, relatively affluent society, we have come to believe that we are invincible.  When we get sick, we are shocked that we cannot be cured.  We feel vulnerability we have never experienced before.  We realize how isolated we have become from our families and our religion.  We look up from our hospital bed,  we see the scientists we have trained.  But don’t need the science as much as an explanation or at least an acknowledgement of our suffering,.  We need to be comforted, if not from our family, then from someone.  We need hope.  We need a healer.

In sub-Saharan Africa where supplies and technology are absent, I often feel more like a healer than I do in the United States even though I can offer little.  In that moment of feeling completely helpless in my role as physician, I search for something to offer.  I “revert” to offering comfort with my presence,  my touch or my conversation.  Ironically, these patients don’t need me in this way.  They don’t need me to try to explain suffering—it has often been a part of their daily life.  They don’t need my presence, they are surrounded by community, depending on them to wash their linens, feed them, even to retrieve what medications are available so that we can administer them.  Often, they already have a healer, wiser to the world, better trained in their role and more accepted than I am.  These patients need my knowledge and they need medicine.

What I have come to learn, is what I knew as a medical student.   . Illness is both about biology and suffering.  Patients need doctors with both scientific skill and the skill of a trained, compassionate listener—a guide to accompany us on a journey fraught with danger.  Patients need have a voice in their care, a voice for their experience.  Doctors must not feel threatened by suffering they cannot stop, we should not underestimate the tremendous impact provided by our presence, our ability to validate the patient’s experience, simply by bearing witness to it.  This is the difference between being a doctor and a healer.