Opt for life with a permanent disability?

[deleted29780]

---

Members do not see this ad.

i was at the ER the other day. A young illiterate woman brought in a very icteric baby. (baby was astonishingly jaundiced, the type which you are more likely to see in an underdeveloped country - and indeed that was the situation) Neonate was very lethargic, had been feeding poorly for about 24hrs prior to presentation. On examination the baby had an opistothonic posture. Absent suck and cry - with a tense and bulging anterior fontanelle.
the bilirubin level based on clinical judgement at presentation was more than 25mg/dl...

The decision at the ER was not to start exchange transfusion - The miserable neonate was not going to make it, and even if it did, it would develop choreoathetoid cerebral palsy, seizures, marked learning disability etc.

----

my simple question, would you have done an exchange transfusion in this case?
will the neonates future problems come into play in you making a decision?

 

[78222]

Judging from what you said, it seems like the ethical choice was to let the baby die as fast as possible. Extending life isn't always the best option. If extending life means certain extreme misery, I think it is best to let nature take its course.

 

[Flopotomist]

The decision at the ER was not to start exchange transfusion - The miserable neonate was not going to make it, and even if it did, it would develop choreoathetoid cerebral palsy, seizures, marked learning disability etc.

----

my simple question, would you have done an exchange transfusion in this case?
will the neonates future problems come into play in you making a decision?

I guess my question is who made the decision? If there was a realistic chance of survival (eg the transfusion effort was not a futile waste of blood) then the question then becomes a value judgement about what life is worth living. That question is a question that should be made by the family after they are educated about the reality of the situation.

 

[oldbearprofessor]

i was at the ER the other day. A young illiterate woman brought in a very icteric baby. (baby was astonishingly jaundiced, the type which you are more likely to see in an underdeveloped country - and indeed that was the situation) Neonate was very lethargic, had been feeding poorly for about 24hrs prior to presentation. On examination the baby had an opistothonic posture. Absent suck and cry - with a tense and bulging anterior fontanelle.
the bilirubin level based on clinical judgement at presentation was more than 25mg/dl...

The decision at the ER was not to start exchange transfusion - The miserable neonate was not going to make it, and even if it did, it would develop choreoathetoid cerebral palsy, seizures, marked learning disability etc.

----

my simple question, would you have done an exchange transfusion in this case?
will the neonates future problems come into play in you making a decision?

It is my understanding that you are posting from and thus referring to a baby you saw in Ghana. Please correct me if I am wrong.

It is impossible for those of us in the US to understand the resources available to you at that setting and make these decisions for you. We can tell you what might be done in the US.

In the US, this child would get a full evaluation of the cause of the symptoms you described. The description you provided leads to a very long differential diagnosis. Some of the things in the differential have a very bad long term neurocognitive outcome, others may not. While this evaluation was ongoing, we would initiate therapy based on the preliminary findings. It is not necessarily the case from what you have told us that an exchange transfusion would be indicated, although it is possible. In the US, depending on the diagnosis the likelihood of death related to the presentation you describe is low and depending on the findings of the work-up might or might not lead to discussions with the family about the nature of care to be provided.

For the medical students reading this who are interested, the work-up might include (again I am only going from what is in the post, some of this might have been done or known and I don't know the birth history, etc).

1. Total and direct bili, liver function, CBC with smear, retic, Type and Coombs, lytes, blood gas.
2. Head U/S or CT scan
3. Sepsis evaluation including congenital viral infection w/u
4. Metabolic w/u including ammonia and lactate as a start.

Therapy would depend on the results of these - is it a congenital infection, an acute bacterial sepsis/meningitis, dehdration from poor lactation, RH disease, etc?

Therapy would certainly include IV hydration and if it was not a direct hyperbili, then phototherapy would be started. An exchange might or might not be needed, likely depending on whether the jaundice was hemolytic in etiology. We often do not need to do them if the cause is dehydration related to low milk volume and there is rapid improvement with phototherapy.

My single best guess is that the baby had sepsis/meningitis and that it is likely depending on the age and the onset and type to have a bad long-term prognosis. But I cannot possibly be sure of that. Although the risk of kernicterus is substantial it is not certain nor is it certain or even nearly certain that the baby would have a profound impairment.

I'm hopeful this helps. Your question is not an ethical one without understanding more about the actual diagnosis and the resource setting in which you work. We cannot tell you what we would have done in your situation.

 

[78222]

It is my understanding that you are posting and thus referring to a baby you saw in Ghana. Please correct me if I am wrong.

It is impossible for those of us in the US to understand the resources available to you at that setting and make these decisions for you. We can tell you what might be done in the US.

In the US, this child would get a full evaluation of the cause of the symptoms you described. The description you provided leads to a very long differential diagnosis. Some of the things in the differential have a very bad long term neurocognitive outcome, others may not. While this evaluation was ongoing, we would initiate therapy based on the preliminary findings. It is not necessarily the case from what you have told us that an exchange transfusion would be indicated, although it is possible. In the US, depending on the diagnosis the likelihood of death related to the presentation you describe is low and depending on the findings of the work-up might or might not lead to discussions with the family about the nature of care to be provided.

For the medical students reading this who are interested, the work-up might include (again I am only going from what is in the post, some of this might have been done or known and I don't know the birth history, etc).

1. Total and direct bili, liver function, CBC with smear, retic, Type and Coombs, lytes, blood gas.
2. Head U/S or CT scan
3. Sepsis evaluation including congenital viral infection w/u
4. Metabolic w/u including ammonia and lactate as a start.

Therapy would depend on the results of these - is it a congenital infection, an acute bacterial sepsis/meningitis, dehdration from poor lactation, RH disease, etc?

Therapy would certainly include IV hydration and if it was not a direct hyperbili, then phototherapy would be started. An exchange might or might not be needed, likely depending on whether the jaundice was hemolytic in etiology. We often do not need to do them if the cause is dehydration related to low milk volume and there is rapid improvement with phototherapy.

My single best guess is that the baby had sepsis/meningitis and that it is likely depending on the age and the onset and type to have a bad long-term prognosis. But I cannot possibly be sure of that.

I'm hopeful this helps. Your question is not an ethical one without understanding more about the actual diagnosis and the resource setting in which you work. We cannot tell you what we would have done in your situation.

Thanks, that puts it into a less abstract context.

 

[Tired]

The miserable neonate was not going to make it, and even if it did, it would develop choreoathetoid cerebral palsy, seizures, marked learning disability etc.

I am always suspicious when people make pronouncements about what neurologic symptoms will develop after a CNS insult, especially with the little ones.

 

[MattD]

I am always suspicious when people make pronouncements about what neurologic symptoms will develop after a CNS insult, especially with the little ones.

You can't prove him wrong!

.... because the kiddo's dead.

 

[MattD]

Judging from what you said, it seems like the ethical choice was to let the baby die as fast as possible. Extending life isn't always the best option. If extending life means certain extreme misery, I think it is best to let nature take its course.

Well now, the very next time you see a patient with CP, you make sure and go tell him that he'd be better off dead, mmkay. Maybe even offer him a yummy overdose of something to help him take action if you manage to convince him that you're right!

 

[deleted29780]

In the US, this child would get a full evaluation of the cause of the symptoms you described. The description you provided leads to a very long differential diagnosis. Some of the things in the differential have a very bad long term neurocognitive outcome, others may not. While this evaluation was ongoing, we would initiate therapy based on the preliminary findings. It is not necessarily the case from what you have told us that an exchange transfusion would be indicated, although it is possible. In the US, depending on the diagnosis the likelihood of death related to the presentation you describe is low and depending on the findings of the work-up might or might not lead to discussions with the family about the nature of care to be provided.

For the medical students reading this who are interested, the work-up might include (again I am only going from what is in the post, some of this might have been done or known and I don't know the birth history, etc).

1. Total and direct bili, liver function, CBC with smear, retic, Type and Coombs, lytes, blood gas.
2. Head U/S or CT scan
3. Sepsis evaluation including congenital viral infection w/u
4. Metabolic w/u including ammonia and lactate as a start.

Therapy would depend on the results of these - is it a congenital infection, an acute bacterial sepsis/meningitis, dehdration from poor lactation, RH disease, etc?

Therapy would certainly include IV hydration and if it was not a direct hyperbili, then phototherapy would be started. An exchange might or might not be needed, likely depending on whether the jaundice was hemolytic in etiology. We often do not need to do them if the cause is dehydration related to low milk volume and there is rapid improvement with phototherapy.

My single best guess is that the baby had sepsis/meningitis and that it is likely depending on the age and the onset and type to have a bad long-term prognosis. But I cannot possibly be sure of that. Although the risk of kernicterus is substantial it is not certain nor is it certain or even nearly certain that the baby would have a profound impairment.

I'm hopeful this helps. Your question is not an ethical one without understanding more about the actual diagnosis and the resource setting in which you work. We cannot tell you what we would have done in your situation.

Well we have more than enough resources to manage all cases. The problem here was not a question of whether we could do a full diagnostic workup -- well said and done we routinely do all that you have outlined in this post. And cases of Neonatal sepsis completed by severe neonatal jaundice are routinely managed here.
my question here is in relation to the social support system for children with a learning disability, and moreso in a setting in which you know parents in a low socioeconomic group will find it difficult catering for such a child.
In a society where disability might even be seen as a curse.
Would you have tried to salvage this life???

 

[deleted29780]

I am always suspicious when people make pronouncements about what neurologic symptoms will develop after a CNS insult, especially with the little ones.

i agree with you perfectly...but there are always associations in our line of work, and thats how we eventually clarify aetiological factors.
Based on studies and research in our neuroclinic for the past decade - we have come out with some interesting findings. An astonishing number of children with some of the problems i outlined had suffered some form of neurological insult in the neonatal period. From the medical literature, bilirubin is deposited in the basal ganglia in cases of kernicterus - this leads invariably to choreoathetoid cerebral palsy --- this has been our observation here.
Prediction of neurological deficits is a bit tricky, but if neonates with extreme forms of neonatal jaundice almost invariably develop choreoathetosis with very difficult to manage seizure disorders...then you might understand my position.
You might not see extreme cases of neonatal jaundice in your certain, because of the literacy rate of your population, and you have a well structured health service.

 

[deleted29780]

My single best guess is that the baby had sepsis/meningitis and that it is likely depending on the age and the onset and type to have a bad long-term prognosis. But I cannot possibly be sure of that. Although the risk of kernicterus is substantial it is not certain nor is it certain or even nearly certain that the baby would have a profound impairment.

I beg to differ...this was a case of neonatal sepsis - i did not give a full history, but there was a strong suspicion. The mother had actually kept the neonate indoors for six days. She was just ignorant and did not see the color change in the baby as being abnormal. The practice here amongst most ethnic groups is to wait for a week before outdooring their child to the whole community.

Fortunately, you might not get a chance to see extreme cases of sepsis complicated by kernicterus, the type that we routinely see here.The reason being that patients report very late over here. I am most certain that hardly happens in your clinical setting. Our observation in our neurodevelopmental clinic has been that such extreme cases eventually develop CP. And its a sad situation, because the guardians are sometimes very poor and ignorant. This makes the management of such cases very difficult. Some parents abandon their children, and its in most situations born out of frustration.

i hope this has painted a better picture for all of you...would you have acted differently?

 

[mjl1717]

i was at the ER the other day. A young illiterate woman brought in a very icteric baby. (baby was astonishingly jaundiced, the type which you are more likely to see in an underdeveloped country - and indeed that was the situation) Neonate was very lethargic, had been feeding poorly for about 24hrs prior to presentation. On examination the baby had an opistothonic posture. Absent suck and cry - with a tense and bulging anterior fontanelle.
the bilirubin level based on clinical judgement at presentation was more than 25mg/dl...

The decision at the ER was not to start exchange transfusion - The miserable neonate was not going to make it, and even if it did, it would develop choreoathetoid cerebral palsy, seizures, marked learning disability etc.

----

my simple question, would you have done an exchange transfusion in this case?
will the neonates future problems come into play in you making a decision?

WOW!

 

[Tired]

i hope this has painted a better picture for all of you...would you have acted differently?

I saw a number of neonatal sepsis cases as a medical student, including several with elevated bilirubin to >25. I have no idea how the kids turned out, since obviously my followup with them was limited.

Of course we would have acted differently. In this country, we don't make decisions about witholding treatment based on a single encounter in the ED. We also don't practice paternalistic medicine by making that decision ourselves; we present all the evidence and options to the families, then let them decide. A more typical scenario here would be several weeks of treatment, followed by reassessment of the child's prognosis, then several family conferences with physicians/social work/chaplain/physical therapy, then finally a decision on how to proceed.

The difference between your perspective and ours is that you look at a child in florid sepsis and a bilirubin of 25, and immediately see a vegetable who will have minimal neurologic function in the future. We see a sick child with a very slim, but nevertheless real, chance of recovering. If you want to play the percentages and refuse to treat every sick kid you see, that's fine. But we still like to play the longshot, because despite your comments, some of these kids actually do get better.

 

[Doctor Bagel]

We also don't practice paternalistic medicine by making that decision ourselves; we present all the evidence and options to the families, then let them decide. A more typical scenario here would be several weeks of treatment, followed by reassessment of the child's prognosis, then several family conferences with physicians/social work/chaplain/physical therapy, then finally a decision on how to proceed.

To me, this is key. Regardless of how the child would turn out, it's not the physician's place to make the decision without consulting the family.

 

[deleted29780]

If you want to play the percentages and refuse to treat every sick kid you see, that's fine. But we still like to play the longshot, because despite your comments, some of these kids actually do get better.

That isnt a fair comment, because what i was describing was an extreme case - we definitely do not kill our patients here - and we follow the diagnostic work ups which are practiced all over the world, thus i can make a reasonable diagnosis if you narrate a history to me. I will invariably request for the same investigations. We will both follow the same treatment guidelines. There isnt much of a difference i can assure you.
I doubt if people in your setting will present that late with neonatal jaundice. The level of 25 mg/dl was a clinical estimate, the levels of bilirubin were astonishingly high in this case. You are failing to look at this case from a different social perspective, not what you are accustomed to --- that is the challenge.

..I rest my case here...there is no point in actually going on with this...Because we are practicing under two different social situations. It is more holistic then we can both appreciate.

 

[Doctor Bagel]

..I rest my case here...there is no point in actually going on with this...Because we are practicing under two different social situations. It is more holistic then we can both appreciate.

You're right here, but I can't see how you would be surprised by the responses. The vast majority of posters here are from the US, so you had to expect that would affect our opinions. I will admit it's interesting to read about how health care is practiced in an entirely different system from our own.

If you think you might get more diverse opinions on another forum at SDN, you can ask one of the mods to move the thread. 🙂

 

[deleted29780]

You're right here, but I can't see how you would be surprised by the responses. The vast majority of posters here are from the US

well i have been in sdn long enough, so i am well aware of the fact that its made up of mainly us students.
I was just hoping that y'all could think about this case almost as though you were practicing with the social challenges i have outlined, would you have done the same thing...thats all i am asking. its not a question of what you would have done under your conditions. whew...i am tired.

 

[Tired]

That isnt a fair comment, because what i was describing was an extreme case - we definitely do not kill our patients here - and we follow the diagnostic work ups which are practiced all over the world, thus i can make a reasonable diagnosis if you narrate a history to me.

Diagnosis requires investigation. You said that the decision was made in the ED. Did you do a CT scan looking for evidence of kernicterus? Did you do a CBC and blood cultures looking for sepsis? Did you have a newborn panel available to look for other causes of the hyperbili? It sure doesn't sound like it.

Saying that you can "make a reasonable diagnosis" based on a narrated history is malpractice in this day and age. Unless, of course, your assertion that you follow the diagnostic workup practiced all over the world is false. In the case of limited resources (no CT, no lab, no NICU), obviously what I'm saying doesn't apply. But by your own claim, you have all this available and simply chose not to use them in this case.

I will invariably request for the same investigations. We will both follow the same treatment guidelines.

But you just said you didn't follow the treatment guideline, and imply that you didn't even perform any diagnostics. In fact, you explicitly chose not to follow the guidelines, and allowed the child to die.

There isnt much of a difference i can assure you.

I'm not assured. Quite the contrary.

I doubt if people in your setting will present that late with neonatal jaundice.

Wrong.

The level of 25 mg/dl was a clinical estimate, the levels of bilirubin were astonishingly high in this case.

How high? You didn't even run a blood level? Why not? If you're actually a physician, you should know that the "clinical estimate" of bili level based on the "level" at which the skin is noticably yellow is incredibly inaccurate. Furthermore, if you're practicing in Africa, I'm thinking this child is probably very dark skinned, in which case "clinical estimates" are worthless.

You are failing to look at this case from a different social perspective, not what you are accustomed to --- that is the challenge.

I'm looking at it from an American standard of care. There are no "social issues" until the diagnosis and prognosis are clear. You have given us neither.

..I rest my case here...there is no point in actually going on with this...Because we are practicing under two different social situations. It is more holistic then we can both appreciate.

You have to make a case before you rest it. Your reluctance to describe this case in more specific terms makes me wonder a lot of things.


Maybe I'm just totally misunderstanding your case presentation. How about you answer a few questions:

1) Did you do any lab or imaging investigations?
2) Please describe your technique for "clinical" determination of bili level.
3) Did the child ever make it out of the ED before you decided not to treat?
4) Did you explain the diagnosis and possible treatment options to the parent?
5) Did the parent decline treatment and consent to letting the child die?

 

[deleted29780]

Diagnosis requires investigation. You said that the decision was made in the ED. Did you do a CT scan looking for evidence of kernicterus? Did you do a CBC and blood cultures looking for sepsis? Did you have a newborn panel available to look for other causes of the hyperbili? It sure doesn't sound like it.

Saying that you can "make a reasonable diagnosis" based on a narrated history is malpractice in this day and age. Unless, of course, your assertion that you follow the diagnostic workup practiced all over the world is false. In the case of limited resources (no CT, no lab, no NICU), obviously what I'm saying doesn't apply. But by your own claim, you have all this available and simply chose not to use them in this case.



But you just said you didn't follow the treatment guideline, and imply that you didn't even perform any diagnostics. In fact, you explicitly chose not to follow the guidelines, and allowed the child to die.



I'm not assured. Quite the contrary.



Wrong.



How high? You didn't even run a blood level? Why not? If you're actually a physician, you should know that the "clinical estimate" of bili level based on the "level" at which the skin is noticably yellow is incredibly inaccurate. Furthermore, if you're practicing in Africa, I'm thinking this child is probably very dark skinned, in which case "clinical estimates" are worthless.



I'm looking at it from an American standard of care. There are no "social issues" until the diagnosis and prognosis are clear. You have given us neither.



You have to make a case before you rest it. Your reluctance to describe this case in more specific terms makes me wonder a lot of things.


Maybe I'm just totally misunderstanding your case presentation. How about you answer a few questions:

1) Did you do any lab or imaging investigations?
2) Please describe your technique for "clinical" determination of bili level.
3) Did the child ever make it out of the ED before you decided not to treat?
4) Did you explain the diagnosis and possible treatment options to the parent?
5) Did the parent decline treatment and consent to letting the child die?

i am amazed. well the mistake i made was that i did not give a full case presentation. I didnt want a long post.
Well i should have outlined what happened at the ER, that would have made things clearer.
Now you need some education...first of all, i dont know if you have delivered any babies of african descent. well they have pink skin, and they retain this skin color for sometime, before they eventually develop their dark skin. so a neonate who is just about a week, can be clearly seen as icteric if he is.
I dont know how much clinical acumen you have...if you do remember your pediatrics, you will know that jaundice appears in a cepalocaudal direction
A clinical estimate of 5mg per dl, can be made if its restricted to the face, about 10 to 15 mg per dl if its gone up to the trunk, and over 20 to 25 mg per dl if it has reached the soles of the feet...and estimation of the depth of icterus is a little more subjective...and i have not heard of the intensity being used as an estimate - clinically
We did an initial workup, and indeed the levels were astonishingly high - the value i cannot recollect.

I was just presenting some of the challenges faced by medical practitioners in less developed countries, and indeed the challenges faced by the disadvantaged...we both know how to manage cases wherever we are. Its a matter of social dynamics thats all i am trying to paint here. And i have come to a conclusion, we work under different conditions...cos you see rehabilitation for the mentally handicapped....you see health insurance...you see social welfare...i see abject poverty...i see little or no hope for the mentally handicapped( less than 1 percent of the disabled are in mainstream institutions being cared for) ...i see a health service in which poor people have to pay upfront before they receive any help...i see no available social support structures for the disabled....

 

[SoCuteMD]

I dont know how much clinical acumen you have...if you do remember your pediatrics, you will know that jaundice appears in a cepalocaudal direction
A clinical estimate of 5mg per dl, can be made if its restricted to the face, about 10 to 15 mg per dl if its gone up to the trunk, and over 20 to 25 mg per dl if it has reached the soles of the feet...and estimation of the depth of icterus is a little more subjective...and i have not heard of the intensity being used as an estimate - clinically
We did an initial workup, and indeed the levels were astonishingly high - the value i cannot recollect.

Just FYI - a number of studies have shown that the cephalocaudal progression of jaundice is not a good indicator of bilirubin levels:
http://archpedi.ama-assn.org/cgi/reprint/154/4/391.pdf

 

[Tired]

Its a matter of social dynamics thats all i am trying to paint here. And i have come to a conclusion, we work under different conditions...cos you see rehabilitation for the mentally handicapped....you see health insurance...you see social welfare...i see abject poverty...i see little or no hope for the mentally handicapped( less than 1 percent of the disabled are in mainstream institutions being cared for) ...i see a health service in which poor people have to pay upfront before they receive any help...i see no available social support structures for the disabled....

Touching. Way to establish the moral high ground.

While I haven't delivered many African children, I have cared for many Filipino and Polynesian children, all of whom were dark enough to substantially impair my "clinical determination" of bilirubin levels. I'm facinated to learn that melanin is acquired in your part of the world.

I will not belabor the hideous inaccuracy of your "clinical" bilirubin measurement, since SoCuteMD has already pointed out your error. Nor will I ask where your transcutaneous bili meter was, since you apparently have sufficient "clinical accumen" to make such a cheap and simple machine unnecessary.

Am I to take from your discussion that you never discussed this issue with the parents, and your health care team unilaterally made the decision not to treat this child?

 

[deleted29780]

Touching. Way to establish the moral high ground.

I'm facinated to learn that melanin is acquired in your part of the world.

i am also fascinated by your impatience and ignorance, you fail to pay attention to detail...cos i kept on referring to the baby as being just a week old. I even added that the african babies are initially pink for a number of days before they eventually acquire their permanent skin colour. You are so ignorant and you are failing to listen to a simple observation made by a colleague. You havent delivered babies of african descent before, so why do you keep insisting on the fact that they are black in the early neonatal period, even though i have told you something to the contrary. Its not a matter of acquisition of melanocytes....i can confidently tell you this, no african baby comes out of the uterus with a the a dark skin colour. Areas of dark pigmentation occur around their ears. As such its not difficult determining icterus in them.

The post of cuteMD, is well taken...and indeed as with all observations in clinical medicine, there is always an error of margin and inter-observer bias. It does not apply to only icterus in a baby, but indeed to all forms of clinical estimations. We are humans and as such we are fallible.
Its so difficult to broaden your world view, because you are so narrow minded, you cannot even see the argument i am putting across. As in the challenges faced by medical personnel working in a setting other than your own. That nothing is ideal in this world. There are some places in this world in which patients cannot even pay for labs and medications. For this case in point i bought the meds for the initial management - as an empirical treatment, after blood samples had been taken. Doctors are forced to pay for the management of patients where i come from - do you know why? these people live in abject poverty. they cant afford healthcare.
That is what we battle with...so please don't preach ethics to me. What will you do in this situation - you request for 6 lab tests and they patient cannot even pay for one...you practically have to pick what you think will be relevant, tied in with what you got on your clinical assessment.
This is not a rare situation, because a significant number of the patients we treat in our tertiary hospitals cannot afford the service. For those who are able to afford, life becomes much easier...you apply your treatment guidelines and things work out fine at the end.
You will be a miserable flop if you were to work in my hosptal, because you have a narrow world view. I can easily work under your conditions - indeed i will excel, you know why? because i will have everything at my disposable. My strong clinical judgment coupled with the readily available diagnostics, will make my clinical practice much more enjoyable. i wouldnt have to bother about how much particular investigations will cost. So please grow up, and remember that there is a world out there other than what you are used to living in. Have a good day.

 

[Tired]

For this case in point i bought the meds for the initial management - as an empirical treatment, after blood samples had been taken. Doctors are forced to pay for the management of patients where i come from - do you know why? these people live in abject poverty. they cant afford healthcare.

So you were wrong when you initially stated that you pursue the same standard diagnostics as the rest of the world? Because what you're saying now is radically different than what you said earlier in this post. Hey, if you've got no resources to work with, then you do what you can. I don't begrudge that. But if you're going to compare your methods to that of industrialized nations, you are bound to get questions about why you didn't pursue a basic laboratory workup in a neonate. Why does that suprise you?

That is what we battle with...so please don't preach ethics to me.

Ethics don't concern me, and I certainly didn't preach any to you. Personally I find ethics dull and uninteresting. You're the one who turned this into an ethical issue, while simultaneously avoiding all questions about your conduct.

You will be a miserable flop if you were to work in my hosptal, because you have a narrow world view. I can easily work under your conditions - indeed i will excel, you know why? because i will have everything at my disposable. My strong clinical judgment coupled with the readily available diagnostics, will make my clinical practice much more enjoyable. i wouldnt have to bother about how much particular investigations will cost. So please grow up, and remember that there is a world out there other than what you are used to living in. Have a good day.

Yes yes, the grass is much greener here. We provide access to care regardless of ability to pay, it's great.

But I digress, and so do you.

For the third time I will ask: Did you discuss the diagnosis and treatment options with the parents of this neonate prior to deciding not to treat?

 

[deleted29780]

So you were wrong when you initially stated that you pursue the same standard diagnostics as the rest of the world? Because what you're saying now is radically different than what you said earlier in this post. Hey, if you've got no resources to work with, then you do what you can. I don't begrudge that. But if you're going to compare your methods to that of industrialized nations, you are bound to get questions about why you didn't pursue a basic laboratory workup in a neonate. Why does that suprise you?

This is our management guidelines for all cases of neonatal jaundice
the probable causes as in any part of the world
- hemolytic dx...Rh and ABO incompatility
- G6PD Deficiency - a very common cause here, since mothers usually store babies clothing in naphthalene balls. And of course naphthalene causes hemolysis in G6PD full defect.
- Sepsis - the TORCHES or any of the common virulent flora in the birth canal
- physiologic ( which is a diagnosis of exclusion)
- enclosed bleeds or bruising
- less common causes here are hypothyroidism, galactosemia and obstructive jaundice

The initial labs would be based on the initial clinical suspicion. we don't routinely perform a battery of investigations. We try to be as specific as possible. There is a bit of disadvantage in that, because patients might present with other comobidities. A ct scan as outlined in the initial post is not done here routinely as an initial workup

These investigations form the initial work up
- Full blood count well CBC under your setting with film comment
- malaria though a common cause of Intravascular hemolysis in our environment, is not screened for in the newborn period routinely, since there is an acquisition of maternal antibodies. we live in a hyperendemic area.
- Serum Bil estimation
- Blood group of both the mother and baby
- direct coombs test on the baby's blood
- indirect coombs test on the mothers blood
- G6PD - is routinely done here, since its quite common
- Blood culture, urine and CSF cultures
- we do a full septic screen.
The prevention of kernicterus is a major aim in the managment of unconjugated hyperbilirubinaemia. our levels for starting phototherapy in a baby > 2Kg is 240 micromols per litre.
we increase fulid requirements to about 20 percent, and take the necessary precautions in phototherapy.

Exchange transfusion is usually started if the serum bil level is about 340 micmols per lit.
though it can be started at much lower levels if the rate of rise of serum bilirubin is rapid. It is also done if the cord Hb is less than 12g per dl.

However the threshold for the intervention by phototherapy or exchange transfusion is started at much lower bilirubin levels if the child is very sick, LBW, aspyxiated, prolonged hypoxaemia, acidosis or sepsis.

We perform a double volume exchange transfusion...we routinely use the veno venous technique with a three way stop cock.

For this particular case the problem was to do with fact that it was a late presentation. The serum levels of bilirubin were excessively high. And with our experience in our unit..a great portion of the babies died when they presented that late. The patient could not afford the tests. i therefore paid for the initial estimation of the levels of bilirubin, i also paid for the the initial blood culture. We started empirical antibiotic therapy since in our experience a good number of causes are due to sepsis. The history and examination was also suggestive of a possible sepsis.
We laid down the facts to the parents. The fact that the chances of survival for their baby wasn't too good. Doctors are respected here as much as they are in your country. Patients are more likely to accept the opinion of a doctor where i come from. We made it clear to them that the chances of survival of their child was still low, form our experience. They couldn't afford the exchange transfusion. I could have paid for that too, but i decided otherwise. We are not playing God, but if you see cases like the one i have described coming back to haunt you as a clinician then it becomes difficult. People see disability as a curse. Parents do not follow up at neurodevelopmental clinics. They give up on their disabled children because they don't see any hope for them. They are too poor to afford medications prescribed for them at neuro follow ups. There have been instances of patients abandoning their children. And indeed there is little hope for them when they are abandoned.
These pictures come back to haunt you as a clinician. We follow a management protocol. And in exceptional cases like this we do what we feel will be right for the parents and our poor society as a whole.

 

[Tired]

[EDIT]

Let's see what I've said that's so arrogant:

1) Fully discuss the treatment and prognosis prior to holding care
2) Fully workup a child before giving up on him/her
3) Treat patients fully, without regard for ability to pay
4) Utilize every available resource to save a child

God, I'm such a pr!ck. I suppose the "non-arrogant" thing to say is that poor kids don't deserve our full efforts because resources are scarce. Or do you think it's good to withold care here because the child is African?

Thanks for stopping by with your input.

 

[smq123]

first of all, i dont know if you have delivered any babies of african descent. well they have pink skin, and they retain this skin color for sometime, before they eventually develop their dark skin.

I'm glad to see that you choose to believe that we are sheltered Americans who only deliver caucasian babies. Nope, nope, never seen an AFRICAN-American neonate. Because, you know, AFRICAN-Americans only make up 12% of the population. 🙄

Geez. In an urban medical center, 75% of your OB rotation will involve working with African-American women. In some urban centers, it is closer to 100%.

Your sanctimonious and self-righteousness is not appreciated.

We laid down the facts to the parents. The fact that the chances of survival for their baby wasn't too good. Doctors are respected here as much as they are in your country. Patients are more likely to accept the opinion of a doctor where i come from. We made it clear to them that the chances of survival of their child was still low, form our experience. They couldn't afford the exchange transfusion. I could have paid for that too, but i decided otherwise. We are not playing God, but if you see cases like the one i have described coming back to haunt you as a clinician then it becomes difficult. People see disability as a curse. Parents do not follow up at neurodevelopmental clinics. They give up on their disabled children because they don't see any hope for them. They are too poor to afford medications prescribed for them at neuro follow ups. There have been instances of patients abandoning their children. And indeed there is little hope for them when they are abandoned.
These pictures come back to haunt you as a clinician. We follow a management protocol. And in exceptional cases like this we do what we feel will be right for the parents and our poor society as a whole.

So, did you, or did you not, "play God"? First you say that you don't play God. And then you say, "we do what we feel will be right for the parents." So which is it? It is tiring to read all of your contradictory statements.

Bottom line - if you told the parents the COMPLETE truth (including the fact that you could offer an expensive treatment that MIGHT have been useful, but you could not guarantee anything), and they still chose to let the child die, then you did what was morally correct. If you withheld information from the parents, and basically made their decision for them, then that was a bad move on your part.

You are failing to look at this case from a different social perspective, not what you are accustomed to --- that is the challenge.

You are also failing to live up to your "challenge" and see things from a different social perspective that you are not accustomed to. I know that you have not lived in America, but the issues that you mentioned are issues that doctors here face too. We see patients from all walks of life and from many different cultures. We have EXTREMELY poor patients. We have patients who do not speak English - they speak Spanish, Chinese (Mandarin and/or Cantonese), Vietnamese, Russian, Greek. We have patients who are in this country illegally. We have patients who, essentially, abandon their children. We have patients who are forced to choose between spending money on medication or spending money on food. I had a 12 year old patient who saw his father get shot in the head because of a "disagreement" with a neighbor. I have had patients who were 15 years old and ALREADY on their 2nd pregnancy. I had a patient who is severely mentally ******ed, HIV-positive, and pregnant. In many urban areas, it is a major celebration whenever a man celebrates his 21st birthday with his friends and family - it means that he didn't get shot, get stabbed, overdose on drugs, commit suicide, or get arrested before then.

Sure, many parts of America are wealthy. But spend a week working at a community health center in North or West Philadelphia, and maybe you'll see that Americans have problems with impoverished patients too.

 

[deleted29780]

I'm glad to see that you choose to believe that we are sheltered Americans who only deliver caucasian babies. Nope, nope, never seen an AFRICAN-American neonate. Because, you know, AFRICAN-Americans only make up 12% of the population. 🙄

Geez. In an urban medical center, 75% of your OB rotation will involve working with African-American women. In some urban centers, it is closer to 100%.

Your sanctimonious and self-righteousness is not appreciated.

Far from the point, thats why in my earlier submission i made no attempt at describing how they look. I just gave the age of the neonate, knowing very well that at least african americans make up 10 percent of your population. And you would most certainly have seen african american patients. Don't try to be sarcastic here, you are making a mockery of your own self. The post you are referring to was not directed to the readers of the post. It was directed at an individual. And if you read carefully, he clearly did not know that african neonates have a pink skin in early neonatal life. Please get your facts right next time. You are the type who take a stand before they analyze the issue. Let me give you a simple advice too, read in between the lines next time before you take a stand.

So, did you, or did you not, "play God"? First you say that you don't play God. And then you say, "we do what we feel will be right for the parents." So which is it? It is tiring to read all of your contradictory statements.

It is tiring trying to explain simple facts to people like you. Telling the patients what you think will be right for them is what doctors do. Telling them what their options are is what doctors. Making prognostication from available clinical assessment and investigations is what doctors do. If that is playing God then all doctors are guilty. And again, you failed to read my last post, because i stated clearly that the parents were informed. We did not take a unilateral decision.

You are also failing to live up to your "challenge" and see things from a different social perspective that you are not accustomed to. I know that you have not lived in America, but the issues that you mentioned are issues that doctors here face too. We see patients from all walks of life and from many different cultures. We have EXTREMELY poor patients. We have patients who do not speak English - they speak Spanish, Chinese (Mandarin and/or Cantonese), Vietnamese, Russian, Greek. We have patients who are in this country illegally. We have patients who, essentially, abandon their children. We have patients who are forced to choose between spending money on medication or spending money on food. I had a 12 year old patient who saw his father get shot in the head because of a "disagreement" with a neighbor. I have had patients who were 15 years old and ALREADY on their 2nd pregnancy. I had a patient who is severely mentally ******ed, HIV-positive, and pregnant. In many urban areas, it is a major celebration whenever a man celebrates his 21st birthday with his friends and family - it means that he didn't get shot, get stabbed, overdose on drugs, commit suicide, or get arrested before then.

Sure, many parts of America are wealthy. But spend a week working at a community health center in North or West Philadelphia, and maybe you'll see that Americans have problems with impoverished patients too.

Wrong again, i have been to the states. I Have seen the impoverised sectors of your country. Please don't waste anyone's time here, trying to describe the diversity of the us population. I would have known this even if i had not been to the states before. Please stop this crap talk...that it is a celebration when a man hits 21 in MOST URBAN SECTORS. Who do you think you are talking to? you are making a mockery of yourself...sure there are some bad neighborhoods, but please don't generalise it. Please keep your utterly useless ideas to yourself. How many white youth get arrested compared to blacks. Who is more likely to get arrested? a black youth walking in a typically white neighborhood, or a white youth walking in a typically black neighborhood? The problem is more of how stereotyped the police are in the states. That blacks are potential trouble makers.The gang problem is more common in african american communities. And even then people don't live in fear as you make it sound. I have been to typically black neighbourhoods in the bronx and brooklyn. I have family and friends living there...i did not hear anyone celebrating his or her 21st birthday with a sense of relief. Gosh, Please don't say things you are not certain about.

 

[njbmd]

Please try to comment without editorials to previous comments or posters. If you have an issue with a specific poster, then use the PM function (Private Message). If you have a comment, then post it in a professional manner. The Student Doctor Network encourages professional discussions and discussions in a professional manner. If you disagree with a post, then post your disagreement without reference to the poster.