Tired
I think most neonatologists would recognize this scenario. A baby is born very prematurely, say 23 weeks give or take a few days, and is placed on a ventilator. He does poorly, and after several hours, at about 2 a.m., it becomes apparent that he will not survive. His blood gases (measures of the oxygen and carbon dioxide in the blood) are terrible, in spite of multiple ventilator manipulations, and his fluid status is getting out of whack too. He was simply born too early, and no amount of intervention can save him.
In these situations I will usually go to the parents and apprise them of the situation. We can continue ventilating the baby full bore, until his heart finally gives out in several hours, or we can stop the ventilator and let the parents hold him, often in a private room. Death comes more quickly then. I usually recommend stopping life support, and speak about letting him die with dignity. Sometimes parents will do that, but other times they cannot bear to give permission to stop the ventilator.
Now, I truly believe it is better to just stop the ventilator in these cases, and that continuing to pound the lungs with the ventilator until the bitter end does no one much good. And I do believe in death with dignity, and that it is better for the parents to be able to hold their baby and simply be a family, even if it is for a short time. But the real reason I want to stop the ventilator is so the baby will die more quickly and I can get some sleep.
I'm pretty sure it sounds petty or selfish of me to be thinking of a few extra hours of sleep, when a baby is dying and a family undergoing a life changing event. But I can't help it. I spend about six nights a month on call in the hospital, and if I'm up all night I'm tired for days afterwards. If I can get some sleep when I'm on call it's not so bad, and it seems really annoying to miss sleep when you know you're just continuing to ventilate a baby everyone knows will die anyway. It's not that I have ill will towards the parents or anything. I just get tired of being tired.
Sometimes I think the best solution would be for neonatologists to be able to stop the ventilator in these situations without the parents' permission. It would avoid making the parents feel guilty about turning off their baby's life support; it would let the baby die with at least a small modicum of dignity; and it would let me get my sleep. It sounds like a win-win situation to me, but I don't think it's going to happen in this country.
P.S. My apologies for not posting a post on Saturday. I was out of town for the holiday weekend, and the wireless hot spot I thought I could use wasn't working.
In these situations I will usually go to the parents and apprise them of the situation. We can continue ventilating the baby full bore, until his heart finally gives out in several hours, or we can stop the ventilator and let the parents hold him, often in a private room. Death comes more quickly then. I usually recommend stopping life support, and speak about letting him die with dignity. Sometimes parents will do that, but other times they cannot bear to give permission to stop the ventilator.
Now, I truly believe it is better to just stop the ventilator in these cases, and that continuing to pound the lungs with the ventilator until the bitter end does no one much good. And I do believe in death with dignity, and that it is better for the parents to be able to hold their baby and simply be a family, even if it is for a short time. But the real reason I want to stop the ventilator is so the baby will die more quickly and I can get some sleep.
I'm pretty sure it sounds petty or selfish of me to be thinking of a few extra hours of sleep, when a baby is dying and a family undergoing a life changing event. But I can't help it. I spend about six nights a month on call in the hospital, and if I'm up all night I'm tired for days afterwards. If I can get some sleep when I'm on call it's not so bad, and it seems really annoying to miss sleep when you know you're just continuing to ventilate a baby everyone knows will die anyway. It's not that I have ill will towards the parents or anything. I just get tired of being tired.
Sometimes I think the best solution would be for neonatologists to be able to stop the ventilator in these situations without the parents' permission. It would avoid making the parents feel guilty about turning off their baby's life support; it would let the baby die with at least a small modicum of dignity; and it would let me get my sleep. It sounds like a win-win situation to me, but I don't think it's going to happen in this country.
P.S. My apologies for not posting a post on Saturday. I was out of town for the holiday weekend, and the wireless hot spot I thought I could use wasn't working.
posted by neonataldoc at 8:04 PM
19 Comments:
I just wanted to let you know how much I enjoy your blog. I am a computer programmer but have great interest in medical stories, so I always find your blog fascinating. Thanks for writing.
As a doula I don't know how much sympathy I can have for your six nights a month on call... ;) Aside from that, I think you're very brave to tell the truth about where your head is at, and I can understand that. I can't say I haven't had similarly selfish moments after 27 hours with a client and no sleep for 36+ hours.
I appreciate your humanity.
I can understand what your saying but I think it is very cruel to weigh someones death by how much sleep you can get in. You will have years ahead of you to sleep and this is the job that you chose knowing full well that you would be dealing with plenty of sleepless nights. I don't have any harsh feelings toward the way you feel about these babies because I know that anyone in your position long enough is bound to feel the same, but this is why doctors are usually not solely in charge of making decisions like this. Whereas the doctor sees a dead-end life using up resources, the parents see their tiny flesh and blood fighting a loosing battle.
Dignity means different things to different people and if the parents want their child fighting for every last breath until the bitter end then that's their choice.
I have a different take on the sleep thing. Need to sleep isn't a want, but a requirement. When you are watching the post of a dying infant, excruciating and traumatic as it is for everyone, you are also putting your judgment and ability to focus at risk for the baby and family you will be caring for tomorrow. I don't see the yearn to sleep as a selfish desire that you'll have plenty of time for later. If that were the case, how easy it would be to store up extra hours during the slower weeks and use them during your on-call nights.
I honestly left night shift because it made me feel like I was working 100 hours a week. I was a day/night rotator and it zapped all of my energy. I slept through all my days off. I had no life outside of my job. I had horrible exacerbations of both my chronic headache condition and whatever autoimmune disease has chosen to evade diagnosis at this point. It really got to the point where I thought my job was going to kill me.
As for the death of an infant, I have some similar views but yet not quite the same. I have a hard time with the fact that parents are forced to decide whether or not to "pull the plug" and that this decision leads to, more often than not, parents choosing to keep their babies alive by some very drastic and very awful measures. I feel that, for one, there is no way a parent can truly grasp all the medical issues their child has going on and all of the decisions, treatments, etc that come with this.
And because of my feelings on this, I feel that those of us who work in this field have a duty to be honest with the parents. No false hope. We don't need to paint only a black picture, but at the same time, I watch time and time again as parents are in extreme denial about their infant's condition. My personal opinion is that I wonder how these parents will feel, 5 years from now, when their infant has died - will they not feel bitter and angry with us for allowing them to hold onto false hope and denial?
I don't see how there is any way a parent can fully understand that letting go is the best thing for both their baby and for them. Isn't it so much worse to go through a futile process where the infant endures a tremendous amount of pain and suffering for a very brief life? I feel like this has to make the grief process itself so very much more difficult than it already is.
I do love your honesty in this post - it's really something that most would never admit to, and I like that you've done so.
Take care,
Carrie
ND,
I'll echo Kristina and add another small but respectful criticisms.
Many of your colleagues, present company included, are on the hook way more than 6 nights per month, and will have some trouble generating sympathy for your plight.
And I understand your comment about withdrawal of support without permission, but I cannot agree. It is an extraordinarily bad idea. This is one of those few times in a doctor-patient relationship when the parents absolutely must give consent.
best,
Flea
I agree with those who say that the parents must give consent for withdrawal of life support. However, I think you need to lose the "death with dignity" line because I think it doesn't go down well with many parents. People are much more open to the concept of futility of treatment.
You also need to make it clear to them that they are only deciding whether or not to continue treatment - and that you believe that death is inevitable regardless of their choice. Be sure that you are clear on that point. You may want to offer to contact clergy for them if they need help making the decision. Chaplains are on call 24/7 many places, too.
I will never forget a baby I cared for in my first months as a NICU nurse. He was only about 21 weeks and the physician on call that night had opted not to intubate him. We brought his dad into the room and the doc was explaining why treatment was futile.
This baby only weighed about 400 grams. The dad looked at his tiny son and at the 8oo gram infant in the next bed - and could not see the difference. He asked why we weren't doing all the things for his son that we were clearly doing for the other baby.
The physician hesitated, then said, "We could do those things if you want" and paused. I interrupted her and said, "We could, and your baby might live a day or two longer, but he is just too tiny to survive, no matter what we do. The treatments will be painful, but they won't help."
He looked at the physician for confirmation - which she gave. Seeing that he still hesitated at the enormity of the decision before him, I made another offer: "Would you like the baby baptized?" His relief was palpable - here was a decision he could manage. Yes, he wanted the baby baptized and no, we did not need to go full-tilt into futile interventions.
I'm not with you on this one Neodoc. There are many times when I don't agree with parents' decisions, but I think we have to defend their rights to make them. This is dangerously close to a rational for the institutionalization of bedside rationing of life and death decisions in neonatology (I'm fatigued by futile care in the middle of the night therefore other patients are not receiving optimal care - the greatest good for the greatest number etc.). Not going to support that and not really even tempted to pretend that it appeals to me. I don't think you would have even considered seriously writing this post if you weren't anonymous and tired. Its good for generating comments, but its not the kind of ethics you practice as a neonatologist and we both know it.
I'd say you need to hire another partner. Contrary to what other commentors think, continuous Q5 call in an urban level III NICU is not a sane way to live your life.
Well suppose you replaced the neonatalogist with firefighter. Say the firefighter has alot of experience battling fires and the fire on his watch happens to be engulfing your home and family. He's tired and he realizes from the phone information given that by the time the fire truck gets there, everyone in the house will be goners anyway and fire is isolated enough that it will just burn out in the end with no danger to anyone else. He figures that even if there are survivors, they wouldn't have much life left. For him, its not worth losing a good night's sleep over it, let alone to risk his life. He talks to the fire marshall and they decide to sleep in.
Hm. Sounds scary. Let's let the experts (firefighters, police, EMTs, etc) choose which emergencies are not worth even trying to help. Why is a physician different?
Got a question for neodoc and any other fleas out there...
How many babies who were labelled 'futile to treat' ever make it home?
Do you think there's a risk that once the word 'futile' has been used it can become a bit of a self-fulfilling prophecy?
How do you guard against that happening... especially when judgement is further impaired by someone being desperately sleep deprived and very keen to get back to bed, for instance, or when someone's known to have a particularly negative/pessimistic outlook towards disability?
Just... curious, I guess.
I just sat by my son's bedside for many days earlier this month, while he was vented. I saw them take the blood gases many times and saw his tissues fill up with fluid. I don't know what the right decision was and certainly it's not the same as a premature baby but it hurts to think that a life or death decision would be expedited because a doc is tired. I'd hate to think that my baby would live longer if it were in the daytime and you weren't tired then. I don't begin to know what all of the numbers on the blood gases mean, or at what point you know that death is inevitable, but I do know as a mother, that when I sat by my son's bedside these last few weeks, that the only answer I could live with was wanting to be able to kiss his face and see him smile again. Ironically, I'll take about this in my blog series this week and I talk about a similar conversation we had on your blog many months ago over the same issue. I talk about wondering if I am wanting to keep him alive for myself or if he's suffered too much already.
I also know that it would have been easy to let him go at that time-easy, if someone had told me that it was futile, I might have been talked into it.
I also know that my son made an amazing recovery. His doc said he's lucky to be alive. Most of the kids at the hospital that had this MRSA pneumonia last year died. But I look at him this afternoon and he's smiling, he's happy and he looks really good. He's still feeding via the g tube but I am thankful for the docs that worked hard to keep him alive. Thankful, he made it. Thankful, they all had enough sleep.
I get tired too, I get about two nights a month where I get to sleep the whole night uninterrupted when Dear Son's day takes him for the weekend. It's hard and I am always sleep deprived. I doubt most people care about that. I do appreciate your honesty though.
Seems like you're looking at thwe options wrong.
There's nothing wrong in theory with being extraordinarily blunt. If the baby will (not "most likely will, but will) die and it's only prolonging life, say it. If the infant is probably in pain, say it. If the infant isn't aware of its surroundings, doesn't have much cognition, say it.
You might also point out that the thing which will probably make him happiest is to be held while he dies, not to sit in a NICU.
And if YOU can't manage to convince them, nothing's wrong with calling ina nurse, chaplain, etc.
But talking about pulling the plug, is, frankly, scary.
Jeez, we're expecting any minute now and all this dead baby talk is making me get teary lol. Emotions are weird.
I appreciate your honesty and congratulate you on recognizing that a desire to sleep is part of your motivation when you consider these decisions. I think you're likely to be able to make better decisions for knowing that that motivation is there than if you had denied it and let the desire fester in your subconsious unacknowledged.
However, I think that you've also just identified one reason why doctors shouldn't be allowed to unilaterally withdraw life support from patients: because they have their own secondary motivations and some of them aren't so pretty. The current system isn't perfect by any means and it is hard for parents to make these decisions, but at least this way two different sets of caretakers (the medical staff and parents) with different motivations and perspectives have to agree that care is futile before aggressive care is withdrawn (I assume any necessary comfort measures would continue until the child died, of course.) This seems likely to reduce the odds that a child is mistakenly withdrawn from care.
Tara, you're confusing support needs (and severity of disability) with quality of life.
How happy and fulfilled any given person can be has got nothing whatosever to do with what enables them to be alive. Kids on ventilators who spend their days hooked up to pulse-ox, heart monitor, g-tube, dialysis, you name it, it's perfectly possible to have an absolutely grand life attatched to it.
Quality of life is about being loved, valued, cared for, comfortable. How well your body works and what help you need doesn't factor into it... unless that help is withdrawn or limited in some way.
Thanks for all the great comments. I addressed the major issues in today's (May 31) post.
Hey, I know that 6 nights a month doesn't sound like much call, but you have to remember these calls are taken in the hospital, not at home. Neonatologists who take more call than that in the hospital tend to look for other jobs.
Have I ever seen a baby labelled "futile to treat" make it home? I don't think so, but that is why we have to err on the side of life and only stop support when we're sure treatment is futile.
In 29 years as a Neonatal nurse, I can say that I've seen 3 or 4 babies labeled "futile to treat" make it home.
All were profoundly handicapped. None lived past age 2. Most only lived a week or so at home. Was that time precious to their parents? I sincerely hope so. If any of them was MY baby, would I have wanted to keep them alive in the state in which they were living? Not really. However, it was their parent's call, not mine and not the doc's.
|Thank you for your honesty. Ignore anyone who says it's different when you are there. The truth is ugly sometimes.
My impression here is that a very good, very human doctor has a keen insight into his feelings, both physically and emotionally, but acts ethically and appropriately no matter how he feels or how exhausted he is.
You're a doctor who chose a demanding, emotionally draining specialty. I'm pretty sure you don't only work 6 nights a month, that you have office hours and that 6 times a month you are up for 36 hours at time (by my estimation).
Blogs are for ventilating.
Thanks for your honesty. And for acknowledging your humanity.
Good lord, if we had to keep our feeling bottled up we would go nuts.
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