Saturday, March 18, 2006

Attention

She was 19 years old, sitting at the bedside of her 10 hour old baby born at 24 weeks gestation. It was my first time meeting her, so I was trying to give her "the talk", where I go over the baby's problems and try to tell her what to expect. We had discussed the survival rates; I had told her about the immature lungs, their honeymoon period, and how they would likely worsen towards the end of the first week. I was now into the sometimes trickiest part of the talk, where I tell them about the chances of bleeding into the brain when -"What's that thing on her arm," she interrupted, pointing to a mild bruise. She didn't seem to be hearing a thing I said.

Later that morning I talked to an expectant mother of about 34 weeks gestation. I say "about" because there had been no prenatal care and mom wasn't sure of her dates. My partner had already talked to her a couple of hours previously, but her nurse asked me to see her again, saying she hadn't comprehended what my partner had said. I went to see her, but she kept falling asleep while I talked. After a few minutes I left, thinking she probably didn't comprehend much of what I said either.

Doctors are sometimes criticized for not talking to their patients enough. I know that criticism is often justified - I've experienced it myself as a patient - but I also know how hard it can be to talk to some patients, and how frustrating it can be when they don't pay attention or don't seem to care what you say. It seems to me that when you're discussing possible bleeding into your baby's brain and possible brain damage, you would most likely be listening closely. But the mother of the 24 weeker wasn't even close to paying attention. Maybe I'm more boring than I realize, but still - it's a pretty important topic. Also, I don't really blame the mother of the 34 weeker for falling asleep - it was morning , and she probably hadn't slept much that night - but that, too, was still a little frustrating. Am I being egotistical for expecting them to listen? I don't need to see rapt enthrallment on their face, but is polite attention too much to ask?

These situations actually occur pretty commonly, and I bet that other doctors would say the same. I'll keep trying to talk to patients and families, but do me a favor: if you're a patient, at least look like you care.

14 Comments:

Blogger Dream Mom said...

I can't begin to explain what these mothers were thinking.

I can tell you that sometimes, when you are in these situations, it's very stressful, kind of like driving in a big snowstorm and someone's trying to talk to you about something else-it's very difficult to focus because of the stress levels. At other times, you have questions that you want to ask the doctor and if you dont' write down all of your concerns, you forget them. I imagine she blurted out the question because she was worried she might forget. In your mind, that is nothing compared to bleeding on the brain (and you are right) but she is young and she doesn't get that.

In the second situation, she could have been tired or it could be drug related. I can tell you that I don't get much sleep some nights and when dear son is in the hospital, being able to sleep for a few hours straight is like being on a vacation. I mean that sincerely. It's tough too, waiting around for the docs or "your" doc to come by; sometimes it seems like you wait for hours.

Finally, these women sound pretty young. I don't think they can comprehend the birth let alone any problems associated with it. I am not making excuses for any of them; I can however relate to the stress and exhaustion.

You have a tough job; I don't envy you!

12:04 PM  
Blogger Sandy said...

I agree with Dream mom , and also wanna add that maybe there was "information overload"
not just from you, but from every medical person who comes in and talks to them, it gets to be overwhelming and plus they may not understand much of it. So they just have that glazed eye look and will nod (or, nod off, LOL)

1:30 AM  
Blogger Flea said...

The oncologists are much better at this than we are. They know their patients and their families will be in too much shock to absorb anything they are told. So they are told over and over at various different meetings. All the meetings are long, and all the meetings involve long periods of time for parents to ask questions. Frequently, they are the same questions, asked numerous times.

As a pediatric generalist, I'm crappy at this.

best,

Flea

6:32 AM  
Anonymous armchair ethicist said...

Well, of course you are justified in being frustrated. Maybe this will help. Post-partum is bad enough, the hormonal situation on top of a crisis . . .you may not be seeing the "real deal" with these moms. They may be on overload an unable to accept information but in anything but the tiniest fragments.

My anecdotal, I'll keep it brief. I can remember having uncontrollable crying spells in the NICU. I desperately did not want to be crying and sobbing, but it was something my body and psyche just had to do. When the neonatal doc spoke to me, and the other specialists we dealt with, I was under even more stress. I was trying to control the crying (impossible) and then feeling very sefl-conscious about how my crying was affecting those who were trying to talk to me. I did receive information, by the way. I needed a lot of patience. I was after all, myself, still a patient.

It could be that the napping, the diverting to irrelevant details about baby are ways of shutting down, maybe these moms just can't take it right at the moment you need to talk to them.

I don't know that anything can be done about it. But I would not take it as a lack of concern or understanding (at least, initially).

Does that help?

10:04 AM  
Blogger La Lubu said...

neonatal doc, for what it's worth, I do remember practically every detail of every conversation I had with the docs---but there's no way that I looked like I did at the time. I had a vacant stare that I directed to the floor most of the time, looking up and nodding at what I hoped were appropriate times. I didn't ask questions most of the time, either because it was pretty cut-and-dried, or because I needed time to process and research.

I survived that time by developing an incredible "tunnel vision". I consciously put my focus the only damn place where it would do any good---on my daughter, herself. It was touch-and-go for a long time, but I could see the impact of my presence on the monitors---her stats visibly improved as I talked to her, low and soft. She held on to my finger, and we'd just be with each other. That, and I was pretty religious about pumping---it helped me feel like a "mom", which is hard to do when you have to leave your baby at the hospital, hooked to various machines. Even harder when well-wishers ask questions like "how's she doing" and "so when will she be coming home?" (I did lose my patience with one of them, saying, "to tell the truth, not worth a fuck, and I wish you'd quit asking me.")

I gave birth via emergency c-section, after almost a week's worth of hospitalized bed rest (translation: I was on magnesium!). I dropped a lot of blood on that operating table. I couldn't stay awake for shit the next day. I slept in front of my lunch the day after. I remember people walking in-and-out of my room, but I was beyond exhausted. Hell, the day after I was released from the hospital, my blood pressure was still abysmally low (I had to come back to get my staples out).

And if I didn't have enough to worry about, when I asked for family medical leave, I was terminated instead. So, I had my daughter on the brink of survival, no job, and...medical bills. And it was getting on to winter, so I was wondering somewhere in the back of my mind how the hell I was going to physically survive. And despite my best efforts, sometimes the thought came to me that maybe she wouldn't survive---and how the hell would I give her a decent burial. How I would even find her grave in the future to lay flowers beside (shut up! shut up! don't think about that!! she'll be fine.....)

So, to wrap up....mom had c-section, no contact with baby before baby is whisked to NICU, mom bloated, groggy, trying to function on mag-brain and no sleep (no one in the entire hospital is fucked with more throughout the night than mothers in premature labor----I had someone waking me up at least once an hour, and I never even had contractions!). Mom is looking at a baby that looks like a bird that has fallen out of the nest---all raw skin and bone. Mom probably lost her job if she's working class (if the completely nonscientific representative samples I took at the two NICUs my girl was in, I'd say job loss is pandemic to NICU moms); if she's young and in college, she's probably worrying about how the hell she's going to finish class. She's just heard all the worst-case scenarios about her kid, delivered by someone who thinks she either isn't paying attention, or is incapable of even a rudimentary understanding of what's really involved. And she may or may not have anyone to help her through all this, if even just to sit down, shut up, and be a witness to the gut-wrenching emotional pain and provide a shoulder (real or metaphoric) to lean on and reassure her that she's not crazy....that it's normal to feel this way, and this too shall pass....

Exactly how does a woman in this situation get the proverbial "good mom" award in this situation, hm? Because this is one crisis that will peg anyone's stress meter. And one common way of dealing with that is shutting down---it's an involuntary response, for the most part.

We NICU parents are thrust into your world with little-to-no advance notice, and are given a crash-course in neonatology----it feels like being asked to land a 747 at night by following the friendly voice coming from the control tower, when the most complicated vehicle you've ever driven is your Chevy.

Is it asking so much that you step into our shoes for that one hot minute? Some of those women are taking in a lot more information than you think. Others---hey, like flea said, just keep telling 'em. They are listening; they just may not be processing it very effectively, considering the circumstances.

4:23 PM  
Blogger neonataldoc said...

All true. And , yes, we do have to keep telling people things over and over again.

9:39 PM  
Blogger mary said...

I'll keep trying to talk to patients and families, but do me a favor: if you're a patient, at least look like you care.

Care about what, if I may ask? About your time? Your information? The good effort you are making?

The young mom who is ten hours postpartum sitting looking at her baby is giving you solid-clear-unmistakable clues that she has heard enough, taken in all she's going to take in, at this moment in time. She has changed the subject swiftly and refocused on the body of her baby, who has a bruise on the tiny arm. It's not about the bruise, and it's not about your worth or value as a doctor or a person, and it is surely not about your skill as a communicator. It's about trauma and stress.

You are giving moms an awful lot of information for that first talk. If many of your moms are reacting this way, that might be the clearest signal you are going to get from this population that you are hitting them with too much, too fast.

When my youngest baby was born, I---a college educated woman in her 30s with many years of nursing experience and two older children---had to be told many times the same information about her heart defects. Over and over. For some reason, I couldn't hear it. Why?

Of course, her cardiologist had decades of experience by that time. He just smiled and said, "that's OK. I'll tell you again later" when I would begin to look away. I was far too polite to simply tell him to be quiet, I'd had enough.

mary

7:54 PM  
Anonymous Dave, Columbus OH said...

My child is in the NICU at Children's Hospital in Columbus right now, even as I type this. This is my third son in 36 months (their mother is a sturdy lady!) and our second in an NICU.

Our oldest son spent five days in the NICU in a city hospital in 2005. The neonatologist was simply *awful* when it came to communication, to the point where I cornered her on the fourth day and MADE her talk to me. She was shocked to find out that (a) I spoke English, (b) I was an educated, technical man, and (c) I wanted details and a plan. She was also highly displeased with our chat and I never saw her again -- even when she discharged our son. It was pathetic and disgusting, and our obstetrician was so angry that he called hospital management. They in turn called the NN, something the nursing staff relayed to me later, indicating that my displeasure was made known to all.

What made the obstetrician so angry is that his oldest child is gravely ill and spends a lot of time in the hospital. His words were, "I get treated the same way and I'm a physician!" That's when I began to form an opinion...

Fast forward to exactly three years later. The doctors caring for my third son after transport to Children's weren't affiliated with the hospital. They see my son once per day and sometimes they call m, and sometimes they don't. After a week of this nonsense I had a lengthy chat with the NN that called me on Saturday. I told him I wanted to know the plan because I didn't think the current approach was working toward resolution. (Note: the first son was 40 weeks and macrosomic; the third was 38 weeks and also macrosomic. These weren't preemies but they had some "big baby" problems.) It took the doctor a couple of minutes to figures out that the guy on the other end of the phone was interested, educated, and able to converse. I sensed that the doctor brightened up considerably because he began to give me real details, and I was much encouraged. Since that time their communication with me has been excellent.

So now for my opinion: doctor's get jaded, and this blog entry confirms what I've observed. Some doctors don't try and never did. But some did try and after parents falling asleep or not caring, not speaking English (city hospital), or possessing little more than an eighth grade education, they become jaded. I feel sorry for those doctors because I'm sure they try (tried) very hard but it was like talking to bricks. I can understand how they get this way, but until I make it clear that I'm not that way, I find it very tough to make them talk.

Keep trying to talk to parents. Every now and then you'll find a little gold amongst all the stones and you can enjoy the treasure.

10:52 PM  
Anonymous Dave, Columbus OH said...

My child is in the NICU at Children's Hospital in Columbus right now, even as I type this. This is my third son in 36 months (their mother is a sturdy lady!) and our second in an NICU.

Our oldest son spent five days in the NICU in a city hospital in 2005. The neonatologist was simply *awful* when it came to communication, to the point where I cornered her on the fourth day and MADE her talk to me. She was shocked to find out that (a) I spoke English, (b) I was an educated, technical man, and (c) I wanted details and a plan. She was also highly displeased with our chat and I never saw her again -- even when she discharged our son. It was pathetic and disgusting, and our obstetrician was so angry that he called hospital management. They in turn called the NN, something the nursing staff relayed to me later, indicating that my displeasure was made known to all.

What made the obstetrician so angry is that his oldest child is gravely ill and spends a lot of time in the hospital. His words were, "I get treated the same way and I'm a physician!" That's when I began to form an opinion...

Fast forward to exactly three years later. The doctors caring for my third son after transport to Children's weren't affiliated with the hospital. They see my son once per day and sometimes they call m, and sometimes they don't. After a week of this nonsense I had a lengthy chat with the NN that called me on Saturday. I told him I wanted to know the plan because I didn't think the current approach was working toward resolution. (Note: the first son was 40 weeks and macrosomic; the third was 38 weeks and also macrosomic. These weren't preemies but they had some "big baby" problems.) It took the doctor a couple of minutes to figures out that the guy on the other end of the phone was interested, educated, and able to converse. I sensed that the doctor brightened up considerably because he began to give me real details, and I was much encouraged. Since that time their communication with me has been excellent.

So now for my opinion: doctor's get jaded, and this blog entry confirms what I've observed. Some doctors don't try and never did. But some did try and after parents falling asleep or not caring, not speaking English (city hospital), or possessing little more than an eighth grade education, they become jaded. I feel sorry for those doctors because I'm sure they try (tried) very hard but it was like talking to bricks. I can understand how they get this way, but until I make it clear that I'm not that way, I find it very tough to make them talk.

Keep trying to talk to parents. Every now and then you'll find a little gold amongst all the stones and you can enjoy the treasure.

10:52 PM  
Blogger RC said...

I concur with the previous posters. When I got my NICU speech (aka the crash course). My 29 week son had been delivered less than two hours prior via emergency c-section.

I'm sure they gave me the facts and the odds and the possible prognosis for my son. I'm sure they told me about the honeymoon period and why my son was intubated and covered in bruises. The nurses told me they had explained it all to me but to this day I still cannot remember anything but a brief glimpse of my son and the fact that they taped his tubes to my gown when I held him. I don't even remember what he looked like.

Of course I cared about what the doctor had to say and would have appreciated the doctors time and attention had I not been completely traumatized by my sons emergency birth and on an I.V. morphine drip.

There are a lot of times (especially in the beginning) when NICU parents simply cannot hear or process what you're saying. If they're giving you a blank stare or falling asleep, possibly it would be better to give it up as a lost cause and try again later.

5:57 PM  
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