• Health care from the heart – my response

    Austin asks for us to remember that health care and end-of-life care can be emotional issues, and he challenges us to feel it.  This is a repost from my old blog, but it’s entirely appropriate:

    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 am a doctor. You’d never know that I am 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 and his skill 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 the top:

    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. And 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. And they took him out.

    They were gone for a few hours, 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 how they had spent the day. 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.

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    • Beautiful. Terrifying.

    • Thank you for sharing. And for trying to fix our broken system.

    • “…he challenges us to feel it…”

      I felt it.

      I’ve had three children spend time in the NICU. All are fine today.

      For some reason, though, the details of how the clinicians acted, how their actions impacted us, and speculation regarding how the impacts might have differed had things not turned out well still somehow feel too personal to discuss.

      But this really hit home for me. Thanks.

    • Good post we had a still born child. I was moved by your post.

    • Thank you for this. I left medicine because of the “system” and now work full time as an ethics consultant and medical ethics teacher…basically because of the kind of experience that you and so many of us went through. Bless you for being honest – I wish more docs acknowledged that these things happen and how we approach them makes a huge difference to our patients.

    • I think we each have our own stories. They may differ in the details, but “we’re there.’

      I think that when we lose energy to change the world, each of us instinctively goes back to a moment or two, especially when we are reminded of them by the shared experiences of others, and remember why we got into what we do……and the reason for our passion.

      We are all healers. Some of us use medicine.

    • Well-written and extremely moving. Recommended reading for everyone who has ever used the term “death panel” to describe end-of-life care.

    • Thanks for a beautiful article, Aaron.

      Several years ago, my wife and I spent two of the worst weeks of our lives in a NICU while our infant daughter slowly lost her life to a condition whose only course of treatment would have involved severe and prolonged medical intervention, with high risks and harsh outcomes for our child at every turn.

      While all the physicians on staff were honest with us about our daughter’s prognosis, some were exceptionally good at helping us feel our way through the process of discontinuing care when aggressive alternatives could have been pushed upon us instead. Every bit of technical care those physicians provided mattered deeply to us, but turning their focus from medical care to human caring was what helped us most during those difficult times.

    • **minor correction** It was a PICU, not a NICU.

    • At least once a month I get a patient at the end of life that we operate upon when I know that there is little hope for the patient. It is usually a demented nursing home patient. They have no idea what is happening to them. After the operation, I know that they will have pain added to their baseline confusion. These patients have no living will and, usually, have no real family, just a distant cousin or niece who says “do everything”. It is very depressing. I know very few people who would actually want to die the way these people die.

      Steve

    • Your post brought tears to my eyes.

      The most hellish days of my life were spent next to my week old septic daughter as a machine breathed for her and we wondered if she’d live to see the next day.

      We are one of the (not nearly enough) lucky families. Our daughter fought through, and with the right combination of medication and care survived. Today she’s 2 and has been pronounced neurologically typical…one of the most wonderful moments since her birth.

      I remember hating the doctors for telling me that she might not make it. But I realize now how much more I would’ve hated them for not telling us the truth. Because if our daughter hadn’t been the lucky story that she is, I would’ve wanted to hold her and share those last hours with her.

    • Thanks for a thought-provoking article.

      On the Gawande article from The New Yorker, the only cavil I have is his citing of Stephen Jay Gould’s article, The Median Isn’t the Message.” I know this article well, I often use it in teaching Statistics. Gawande paraphrases Gould,

      The patients were not clustered around the median survival but, instead, fanned out in both directions. Moreover, the curve was skewed to the right, with a long tail, however slender, of patients who lived many years longer than the eight-month median. This is where he found solace. He could imagine himself surviving far out in that long tail.

      What Gawande fails to note is that a number of factors gave Gould reason to believe he belonged in the long tail. It wasn’t simply a matter of saying, “Oh, 1% of patients with abdominal mesothelioma survive 5 years, I want to be in that group.” There were other objective criteria that gave him reason to believe he belonged there.

      This is not the case for every cancer patient. Stephen Jay Gould had the professional expertise to read the literature and make a reasonable assessment of his situation. Most of us do not, and perforce must rely on physicians to tell us what our situation is.

    • I’m a third year medical student on a rotation particularly difficult because I’ve not yet met a practitioner here who appears to love his or her job. I have often observed physician attitudes of both of the NICU attendings that you’ve described, and I always try to make a note to my future self about which ones I aspire to – but it can be difficult to remember, especially when surrounded by the opposite. So thank you for reminding me why I want to work with sick and dying children.

      (And their families, who benefit from a different, non-pharmaceutical non-technological type of “medicine”.)

    • As someone who has had to go through the stress of having close relatives die in the hospital, I will say that the truth is the best thing one can hear. I think that no matter what we are told and want to believe, we know that things are not going well and will likely get worse. So when we hear candy coated BS it just makes the whole situation harder to deal with. Humans mostly have the capacity to deal with death just like most have the capacity to deal with living. Lying about it hampers that capacity. Fortunately in both cases when my father and sister passed the doctors and nurses were honest and forth right about the process and outcome. Understanding about the process of dying helped immensely with the process of living.
      Thanks to all the doctors who understand and put into practice that unbelievable difficult part of medicine.

    • I was deeply moved by this. Back in the 60’s I worked as a RN in an Intensive Care Unit/ I reached a point while working there that I saw all the waste, pain and money spent to keep people with multiple organ failures,alive for 1-3 more days. For what???? I left nursing after that experience. It felt immoral to me to be part of it.