PICU PRESSURE is an month-long occasional series about my family’s stay in the PICU at Hasbro Children’s Hospital to raise awareness of The Walk for Hasbro. If you can spare a couple of bucks please click the banner above to a wonderful cause. Earlier posts include How’d we get here? and A Summary.
I’ve worked in hospitals for a long time and so the fact that someone is a doctor doesn’t impress me much anymore, yet the fact that someone is a great doctor can put me in awe. Even by a conservative estimate in Liam’s 21 months at least 100 doctors have seen and examined him. Both of the hospitals that Liam has stayed in long-term are teaching hospitals and new residents and interns rotate into and out of the units every 28 days. Small staffs of attending physicians rotate in every week. Morning rounds are attended by outside pediatricians, GI docs, Neurologists, surgeons, ophthalmologists, audiologists, pulmonogists, cardiologists, , and for us even geneticists doing research, all of which may also have interns following like puppy-dogs. Not all of them at once of course, but over the course of a 109 day stay, you meet a lot of doctors. I’ll always remember the good ones. I will always respect, admire, and be grateful for the great ones. There really aren’t enough of those. The two most important “Docs” in Liam’s life though are practicing medicine without a license. Karin’s degree is in sociology and I don’t even have a degree but we are both now MD’s with an intense specialization in Liam.
Nearly every single morning while Liam was in the PICU Karin and I attended and participated in morning rounds in Liam’s room. I do not mean that we only listened and asked questions. I mean it when I say we participated. Karin and I were lucky (I’m constantly amazed by the things I feel we are “lucky” for since Liam was born) that we spent 153 days in the NICU to learn how to ask the right questions and get the right information out of our doctors. Not all doctors interact with parents of patients in the same way and learning the ways to get through that with many different doctors from the day Liam was born put us at a distinct advantage to parents thrown into the hospital environment due to a sudden emergency or illness. The rarity of Liam’s syndrome as well as the huge range in the severity of symptoms from case to case also put his mother and I at the forefront. Believe me when I tell you that no matter the level of education or years of experience, Karin and I know more about Liam’s medical needs than any doctor in the world.
I’m not trashing the doctors here. They just don’t see him every minute. They weren’t experiencing every procedure. They only have a medical history sheet and diagnosis to go on. The good ones get that. The good ones know that it’s not about putting on the brightest face because you don’t want to upset anyone. The good ones know that the best thing they can do is give you ALL of the information not just what’s pertinent to today’s decision. The good ones know that information gleaned from the insights of parents may be the key to a breakthrough in treatment. The great ones though, actually use the parents as a resource. No one knows how a baby is tolerating a change in medicine or therapy better than his or her mother or father who spend as many minutes as they can holding that baby in his or her arms. It don’t matter what the flow sheet or the monitors are saying about it. The great doctors get that and ask the right questions of the parents. Believe me you learn the difference.
In the PICU at Hasbro each of the 5 attending physicians rotate in and out of the unit every friday morning. THe attending is there to make the big decisions and steer the ship during the day hours and whenever a trauma comes in. The day-to-day testing and exams are preformed by the team of residents and interns led by the chief resident who rotate in and out every 28 days. They scurry about with the tests and making of orders and researching treatment options and talking to the parents. Every morning the residents and interns meet with the attending for rounds in each room and discuss the case and the plan for the day. Residents give their report on the patient and the specifics of the past 24 hours and then give suggestions on the next 24 for the attending Dr and the parent’s approval. The attending asks questions not only specific to Liam’s case but also hypothetical questions to promote discussion like “If Liam hadn’t responded to [insert med here] what would you try next?” I loved rounds. By the middle of our stay after having run through at least one rotation of every attending doc and learning each of there styles I used to jump in and give my own answers. The med students didn’t really like that very much. Especially when I was right. I didn’t make it easy for the students on Liam’s case but it really isn’t my job to. It’s not my job to teach them although a few had come back after their rotations to let me know that I had taught them some things about interacting with patients and parents. I have always been and will always be very proud of that. I know I’m right in saying that they will be some of those great ones I keep talking about.
I am realizing just how arrogant I may be sounding today. Guess what? That’s because I am, and should be, about this. I firmly believe that no one in this world can be better parents to Liam than his mother and I. I think all good parents think the same thing about their own kids and they should. Karin and I had 9 months to learn so much about medicine and treatments and research specific to Liam’s case that I feel I can speak as an expert to these things. Maybe I’m arrogant in saying this too, but I think that Karin and I are smarter than your average bear and I’ve learned what I needed to to make sure that Liam gets his picnic basket. So while I couldn’t ever slide into a lab coat and run rounds for any other case in the world I can speak with authority about Liam’s case and also about doctor/parent communication and hospital stays.
For instance, You can tell a lot about how much a doctor cares for their patients and what they do by their bedside manner but I think that you can tell far more by how they treat their students. I’ve broken down all the attending physicians that we’ve encountered between all of the hospitals we’ve spent time in into three different groups. All of the attending docs and specialists we’ve seen fall somewhere in these three categories and their behavior towards parents (or patients) usually falls right into line with their behavior towards their students. These are not veiled opinions about individual doctors who I did or didn’t like, nor are they only the doctors we met at Hasbro, but a composite of the many doctors whom I have observed on this bumpy little ride of ours. The three types of doctors I’ve seen teach are…
The Lecturer a.k.a The Researcher
The lecturer talks quite a bit during rounds. Okay more than quite a bit. The lecturer loves to talk during rounds and loves to talk about all of the research he or she have done into this topic or that topic. More often than not they are researchers first and foremost. Brilliant for sure, the Lecturer can remember the percentages from the last three double-blind studies on whatever drug you may throw out there and would love to list them all to you. Listen and observe how brilliant and smart the lecturer is and just be glad you get the chance to tell people you learned from the lecturer. The Lecturer can be a good doctor but not a great one as far as bedside manner and dealing with families. The Lecturer usually has a hard time giving bad news and does it without finesse by focusing on unrealistic best case scenarios rather than being brave enough to discuss worst case scenarios. Research is needed and I’m glad doctors like the Lecturer are doing it but when you are working in a hospital (especially a children’s hospital) you’re going to have to talk to patients and families.
The Answerers are usually good doctors and can be great doctors. They listen carefully and encourage questions from their students while being knowledgeable enough to not get thrown off by any question. Even if their answer at the time is that they’ll need to look something up they can usually mention exactly where to look. They do the same thing with parents and are not afraid to answer as truthfully as possible no matter the severity of the answer. They have the patience to answer all questions from both parents and students and for that they are usually loved by both. I know that I recall facts better if they stem from a question of mine than if they are lectured to me; the students seem to recall things at future morning rounds better with The Answerer as the attending that week.
The Questioner does just that and although the first thing that may come to mind is the pop quiz style hard-ass approach seen from the mean old doctors on Scrubs I actually found every one of the doctors in this category to be great doctors. The Questioner is confident enough that they don’t need to show everyone how smart they are by saying anything but also knowledgable enough that they’ll be able to steer the student to the answer by asking questions like “What do you think would work?”, “Where would you start the dose?”, and of course the ever-present simplicity of “Why?” The Questioner forces the student to come up with the answer themselves and in my experience is then able to condense it to explain to the parents. Asking ‘why’ over and over also helps the parents to see how the plans for care are put together, enabling and empowering them to participate in their formulation. By the way, while I loved all of The Questioners we met. Students always seemed scared of them. I guess the mean old guys on scrubs weren’t too far off.
Anyway, Its getting late and I’ve rambled on and on about doctors of all kinds that we’ve seen during Liam’s lifetime and not just at Hasbro. It was in the PICU though, that I learned as much as I have about Liam’s care, the inner workings of diagnosing problems and the balancing act between the benefits and side effects of all kinds of different treatment options. (again to be clear I’m talking about things specific to Liam’s case. Geeze I’ve got a brother-in-law who’s a doctor and I’m not trying to offend any doctors out there anyway.) But if I could learn everything that I did without the benefit of pre-med or medical school then Hasbro must be a pretty damn good teaching hospital. The doctors at Hasbro truly are top-notch, and while they can’t all be great ones, you have probably already read about how they saved my boy’s life (even a Lecturer) more than once. I will forever be grateful to each and every one of them.