• My favorite post

    I thought I’d give you what I consider to be my best work. It also happens to be the one people ask me for the most. I apologize if you’ve read it before, but I like to be reminded why I do what I do…

    Go back through nearly a year of posts, and I bet you won’t find many that talk about my experiences with patients. You might not even know I’m a doctor. You’d never guess that I’m actually a pediatrician, and that I do still see patients now and then. I don’t talk about my clinical experience much with friends, or even family.

    And even when I sit and think about being a doctor, I don’t think about the last seven years of being a faculty member here at IU. I don’t think of clinic when I was a fellow before that. When I think about being a doctor, I almost always go back to residency.

    Look, I know many physicians who love caring for patients. I even know those who remember fondly their days as residents, being in the trenches and completely immersed in clinical care. I was not one of those people. I hated residency. It really didn’t agree with me. Ask my wife; for that matter, ask any of my friends. It was obvious to anyone who spent any time with me.

    I didn’t hate residency because of the hours, although they were terrible. I didn’t hate the pay. I didn’t hate being overworked or underappreciated. I didn’t hate patients or the people I worked with. I hated the system. More specifically, I hated being a doctor in the system.

    I just finished Atul Gawande’s latest masterpiece. I am rarely so jealous of anyone as I am of him right now. He brought it all back for me. I can tell you many horror stories of those three years in Seattle. But ask me to rank the top few, and this one inevitably comes to mind:

    I was on a rotation in the Neonatal Intensive Care Unit (NICU), where babies who are born prematurely or really sick are cared for. A couple came in with a midwife after a way-too-long and rather botched attempt at a home delivery. As soon as they arrived, we knew things were not going to go well. The baby was born in extreme distress. It appeared to be septic, or massively infected. Initial vital signs looked really bad. Then things got worse.

    One by one, the baby’s systems seemed to shut down. He couldn’t breathe on his own, so we put in a breathing tube. Then his heart started to fail, so we put lines into his umbilical cord to pump in medications. His lungs collapsed, so we put in tubes into his chest to help them reinflate.

    While another doctor and I struggled to keep all this going, I listened as, right behind me, the doctors in charge sounded downright optimistic to the parents, who were, understandably, a mess. They could not imagine how things had gone wrong so fast. They wanted to hear good news. No one seemed to be able to tell them the truth. They were given messages of hope, and they told us to do everything. That’s what we do in medicine. That’s especially what we do in the NICU.

    They left to go home and get clothes and supplies. Everyone dispersed.

    So I was alone with this baby. It was small and blueish and had an ungodly number of devices and tubes coming out of it. I was 26, depressed, and I started to cry.

    The baby never moved. His heart would slow down, and I’d up his meds. His heart rate would come back up until it didn’t, and then it would drop again. So I upped the meds some more. I don’t know how long this went on. I didn’t eat, I didn’t go to the bathroom, I didn’t talk to anyone. I just stood and watched.

    Eventually, the ventilator stopped getting the job done, so we had to put the baby on an oscillator. Basically, instead of giving normal breaths, this machine shoves tiny amounts of air in and out really fast. It sometimes works when other things fail. It was loud, noisy, and made the baby shake. I don’t think he noticed.

    Things slowly got worse. Nothing was working, and every vital sign was heading downwards. As instructed, I just kept adding stuff to keep him alive. But deep down inside, I started to think that what I was doing was wrong. Not incorrect — wrong. I wondered if I was hurting the baby. I just wanted him to be at peace. And, for a moment, I wanted the baby to die.

    I don’t like to think about it. I try not to. Ever. But it happened.

    Not long after, nothing I was doing was working. I called in the doctors in charge, and they agreed. They asked where the parents were. It suddenly dawned on me that they hadn’t yet returned. We called them, and they were shocked to hear how bad things were. After all, those same doctors had told them things were going to be OK.

    They rushed back as fast as they could. They didn’t make it in time.

    I thought I would post a piece of Gawande’s article and talk about how we completely screw up end-of-life care. I thought I would make a comment about how we spend too much money or waste resources. I thought I would talk about tradeoffs and better choices. But I can’t. Partly because I can’t do his work justice, and partly because this is an issue where deep down inside I think we are doing a ton of harm. Full stop.

    I went home that night and bawled uncontrollably. This kind of thing happened all too often. I toyed with the idea of getting out. I even prepared some resumes to send off to companies outside of medicine.

    But, some time later, I found myself back in the NICU. A similar situation was occurring. This time, though, the doctor in charge handled everything differently. She spoke to the patients honestly and in a completely different tone. She asked the parents what they wanted out of the short time they might have with their baby.

    They cried at first, but then they stopped. They cleaned the baby up and dressed him in clothes his grandparents had bought. They took him out.

    They were gone for a bit, and then they came back. They allowed us to give the baby drugs to comfort him. They held him, as a family, as he quietly passed.

    I remember quite clearly his sister was in the room. She was about six. I asked her what they had done. She told me how they had taken the baby to the park to see the water. They had brought him to family members so everyone could hold him. They showed him the sun and let him lay in the grass and let a dog lick his face. Her mother was listening in at the end, and somehow smiling.

    Some months later, I ran into the mother in a different part of the hospital. She remembered me, and thanked me for all I had done. I remarked that I hadn’t done much; they had cared for the baby.

    “No,” she replied. “Without all of you, he never would have known what chocolate ice cream tastes like.”

    I spent four years in medical school learning how the body works, how it can break down, and how to repair it. I spent three more learning how to give the right drugs and do the right procedures to fight illness. And in all the time I’ve been a doctor, I honestly don’t know if I’ve ever done any more good than helping to stop the system so that baby, and that family, could share some ice cream.

    I have a hard time explaining what I do to people. I’m not trying to discover a drug or cure a disease. I want to fix the system. That’s how I found peace. That’s how I practice medicine.

    That’s why I’m a health services researcher.

    AEC

    For the record, I have changed some details in a small way as to make it impossible for anyone to be identified in this story.

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    • Beautiful and poignant. Thanks for sharing your experience. Having spent a significant amount of time as a resident on the bone marrow service and feeling like a hapless participant in a Milgram authority study and I can sympathize. Thanks for trying to fix the system.

    • This was a truly moving and inspirational post. Thank you.

    • That is a very moving post and I am glad you have found peace with what you do now.

    • It’s not often the case, but words escape me. All I can say is Thank You.

    • Wow. Thank you for reposting. I had not read this before and I’m very glad I did. Very powerful.

    • I have some stories of my own from the 1970’s version of neonatal ICU. As a nurse, I went into the field full of excitement and hope as I had experienced premature birth and death several times personally. While there were a few successes, most of the situations I experienced were deeply distressing, stressful and ended with death or worse. Yes, sometimes there are sitiuations worse than death.
      I had so many nightmares at the time and to this day, all these years later, still remember in great detail what we put these poor babies and their parents through.
      While we aren’t often forthright enough to talk about the economic factor, even in those days, each baby’s care amounted to over a million dollars each, minimum. When the babies did survive, they often had so many medical needs that most young couples weren’t prepared to deal with; intellectually (sometimes), emotionally, and financially.
      Talk about a “trainwreck” !!!!
      Then there is the end of life story about my mother who had cancer.
      We loved her dearly. We wanted her to live. SHE wanted to live but all the false hopes and the treatments that were worse than the disease, if that’s possible. After watching the agony, the humiliation, and after I don’t even know how many dollars spent, the end came.
      It seems so crass to talk in the same sentence about the life of those one loves and the dollar amount to try to “save” them. But honestly, I don’t know what I could give to have spared my mother that horrendous death. When do we draw the line? Once you start, it’s often hard to stop trying.
      One last comment, I am so stunned that parents were even allowed to take their baby out of the hospital …..to let them allow everyone to hold him and the dog to lick him and then bring him back. It’s lovely but I am so surprised. At no time in my career did I ever anyone who would have allowed that. What a beautiful story.
      Some people wonder why many health care professionals seem “cold” but how many situations can one expeience before you either crack from heartbreak or you “turn off, tune out”.

    • Thank you. Thank you for not giving up. Thank you for sharing this experience with us. And thank you for all your efforts to make things better, in your work, and in your writing.

    • Very nice post. I’m not able to make the jump from your experiences described here to the career goal of fixing the system, however. One of your mentors “got it”, the other failed to. “It” does not strike me as a systemic issue but rather a personal one. Shortly into my life in private practice I had the unfortunate experience of diagnosing metastatic breast cancer in a 36 year old woman who (as well as her family) could be described as beautiful in every way. She was dead within 10 days of giving birth to her third child. I had been called as a gastroenterologist to assess her markedly abnormal liver. When the biopsy results returned, her OB, who new her well (having delivered her other 2 children), called me to ask that I go to her bedside and deliver the horrific news. I was astonished at the request, having known her for a brief couple of days. The task was (I assume) easier for me although we all shed tears in that room. The OB’s failure to take ownership of that situation was not a systemic failure, but a personal decision that was rooted in his on frailty, and ultimately I was thankful to have helped him out.

    • Jeff Hoffman – Of course it’s a systemic problem! I saw it happen to my mother. I saw it happen to my father. I was lied to by doctors and nurses, who even tried to make me feel bad when I pointed out that what they were telling me couldn’t be true.

      The tendency to overtreat when death is likely is systemic – as long as there’s money to pay for that treatment.

    • You were smart to heed your feelings and leave the bedside. I left the ICU setting because I could no longer stand to put elderly and terminally ill patients through the torture of ventilator care and other treatments. Most people don’t have any idea what it really means to “do everything” to try to save their loved one. As Judy stated, there are worse things than dying.

    • Heidi Stevenson: You were told two stories, both occurring in the same institution. The treatment plans applied were described as polar opposites. Your response is that the problem is “systemic”. I’ve been doing this work for 20 years and don’t argue that the tendency to overtreat is systemic, especially in subspecialties in which there are significant financial gains such as oncology.

      However, the blog post is specifically about how two patients were treated differently with markedly different outcomes in the same hospital. One can conclude that if the neonate in the first story were cared for by the physician in the second, Dr. Carroll would not have been so upset. These stories have entirely to do with individual decisions taken by individual physicians that set the course for these babies. It has to do with assuming ownership and responsibility for the course of events as much anything else and to impugn that the physicians in the first story were somehow motivated by “systemic” forces not acting upon those in the second is illogical.

      The practice of medicine isn’t for everyone. No doubt the physician described in the second story was exposed to the same harsh environment in her formative years as was Dr. Carroll, but her temperament and motivation charted a course that perhaps made her an exemplary physician in the realm of bedside care, a choice that was unappealing to Dr. Carroll. You get to choose how you practice medicine, hopefully to make your environment a better place. There is nothing systemic about that, as these two stories exemplify. No doubt Dr. Carroll’s choice was the correct one for him.

      • Jeff Hoffman, what you wrote simply doesn’t have much to do with my point or Dr. Carroll’s. The fact is that it’s a systemic problem, not just one of individual doctors.

        Dr. Carroll was glad to see an exception to the rule, but clearly left out of the realization that it was just that – an exception. He wrote of a systemic issue, of a system set up to offer false hope for no benefit other than its own profits.

        My own stories were NOT of the same institution. In one case, there were no specialists involved. They were distinctly different from each other, but had in common an obvious desire to wring every last penny out of the patients.