Wednesday, February 22, 2006

Discrepancy

Consider two scenarios.

One, an eight year old boy and his family are counselled by a pediatric oncologist about treatment for his lymphoma. She gives the child a 50% to 60% chance of survival with the best treatment, a combination of chemotherapy and radiation, with the child having about a 50% chance of serious brain damage from the treatment. The parents decline the treatment and opt to give the child comfort care at home.

Two, a woman pregnant at 24 weeks gestation and in preterm labor and her husband are counselled by a neonatologist about the baby's chances of survival if she delivers at this gestation. The baby has a 50% to 60% chance of survival if resuscitated fully at birth and put on life support, with about a 5o% chance of serious brain damage if he survives. The parents decline to have the baby resuscitated and opt for comfort care only.

The above vignettes are fictional, although the numbers for the 24 week pregnancy are accurate, and I and many other neonatologists have had a similar discussion with parents many times. I wonder, though, what the response in each case was to the parents' refusal of aggressive treatment. I suspect that for the 8 year old, there would be many who think it appropriate to call the child protective services agency or the courts to force the child to have treatment. For the baby, though, it is well accepted that parents can decline treatment and let the baby die. (There is an article in the January Pediatrics that describes one hospital's guidelines about resuscitating babies that shows the majority of caregivers would accept the parents' decision to forego resuscitation. I think their experience is similar to most NICU's around the country.) I have never heard of anyone trying to get the courts to force resuscitation of a just born extremely premature baby.

Yet what is the difference between the two patients, the eight year old with lymphoma and the few minutes old premature baby? Both are alive, separate from the mother. What is it about the very beginning of life that allows us to let the baby die when we might insist on treatment for the 8 year old? Is it because over 8 years we have had time to become attached to the child, to see him develop a personality?

Or is there no difference? If we insist on treatment for the one, should we do the same for the other? Is it age discrimination if we allow the baby to die and not the 8 year old?

This is not merely a hypothetical situation. Every day decisions are made whether to resuscitate babies of 23 to 24 weeks gestation, at the so called "border of viability." Personally I have a little trouble denying care to them when we would not allow that to happen if the child were older. (And, in fact, most parents at 24 weeks gestation do opt to have their baby receive full support.) But there is a discrepancy, and I can't quite figure it out.

20 Comments:

Blogger Dream Mom said...

In reading the two scenarios, there appears to be a difference, at least for me. In the second scenario, you state that the baby would need to be fully resusitated and put on life support and even then has only a 50-60% chance of survival with a 50% chance of serious brain damage. When I read this, I hear that the baby died and is resusitated. That is very different than if you had a living baby who is ailing and you are asking for decision as to whether to continue life support. Stepping back, I can understand the larger question, as to what is the difference and if we are holding different standards for different ages.

Because of the profession you are in, you see these scenarios every day. As a mother, I can only give you my perspective having lived on both sides so to speak of the coin.

As the mother of a severely disabled child, I have lived with my child's disabilities for 14 years. Given the 24 week old scenario 14 years ago, my choice most likely would have been to choose life for the child despite the fact that it meant to resusitate the child fully and given the fact that the odds were not in the child's favor. I would have made this decision based on my religious and spiritual beliefs that God would take the child when it's time and that my role as a mother is to look out for that little, helpless child and do whatever is necessary to prolong his/her life. I would feel good about that decision. I should also say that if that were my first child, I would have had my entire life's dreams on that child and felt I was "entitled" to experience motherhood in it's entirety.

Having taken care of a 14 year old severely disabled child since birth, I still am not certain what my decision would be however I might think that if you were to tell me that he/she would need to be "fully resusitated" that I may make a different decision. My decision now would be based on a lifetime of experience caring for my son-understanding the challenges he faces every day just to survive. These challenges not only include the obvious ones such as being unable to talk, walk, feed himself or be toilet trained but also a lifetime of seizures, hospitalizations and now deterioration. I would think about his quality of life and how currently his days are spent lying in bed and choking at night because his throat muscles are deteriorating and he can no longer manage his saliva. I think often of the quality of life issues and how different his life is than other 14 year old boys. It might also be based on the difficultly that I see in the real world to find daycare for children with disabilities which is virtually non-existant. It might be encompass understanding that my son's ability to go on should not hinge on my ability to not want to let him go in his own time or when his body is no longer able to sustain him. It may mean that I need to be less selfish in terms of my hopes and dreams of being a mother and instead put my child first by being wise and listening to his little body and God's voice when it's time to go.

We live in a society of "entitlement". We think it's our "right" to have children, it's our "right" to choose life at "all" costs to our children.

I also remember how my prayers have changed over the years with my son. In the beginning, my prayers were often what "I" wanted for my child-to be healthy, to have less seizures, etc. My prayers have changed over the years for my son. I now pray for the physical strength to continue to lift him and the emotional strenth to handle whatever comes my way in terms of his health. I leave it up to God to decide on the next best course for my son.

Finally, I love your blog and read it every day. I love your insight and the fact that you always have topics that raise awareness as well as allow for spirited discussions. Your posts do make a difference even if I don't always tell you.

10:36 PM  
Blogger neonataldoc said...

Thank you again for your very insightful comments. I think we health care providers have to look to people like you as the true experts on these questions.

I was trying to get at the larger question of the age difference causing different opinions. Most 24 weekers are not dead at birth, but most do need some respiratory support - a ventilator or CPAP - to survive.

I find it interesting that we both have some ambivalence about these things. They are not easy issues.

I'm glad you enjoy my blog. It's great to hear they make a difference!

Finally, you might consider submitting a post of yours to Grand Rounds. Your thoughts deserve a wider readership.

12:46 PM  
Blogger neonataldoc said...

P.S. This week's Grand Rounds are at www.doctorandy.blogspot.com. Next week's will be at www.cut-to-cure.blogspot.com.

12:57 PM  
Blogger Dream Mom said...

Thank you. Yes, I did understand your question regarding the larger question as I mentioned at the end of my first paragraph, however I did not answer it. I do agree with you that there is definitely a discrepancy between the two scenarios and also agree that we do hold standards for different ages. I simply hope I never have to be in a position to make those decisions.

4:01 PM  
Anonymous scan man said...

Hi, I'm very new to blogging. I came across your post titled 'Inappropriate' recently and I was very impressed by your thoughtfulness. I was surprised that there was no mention about antenatal diagnosis of holoprosencephaly. Wouldn't the decision to terminate the pregnancy have been easier if say the diagnosis was made on an antenatal ultrasound at about 20-24 weeks.

12:34 AM  
Anonymous Anonymous said...

I am the father of a 24 weeker that we didn't try to save (the approach may be different here in the UK). I think we've gone too far down this save a human life at all costs route. Accepting a life shortening rather than agressive treatment should be available to all (especially towards the end of a normal life term). Mind you I don't even see eye-to-eye with my wife on this issue. Perhaps us males are (in general) more detached.

Biscuits Brother

7:58 AM  
Blogger neonataldoc said...

Great comments. Scan man, this child's holoprosencephaly was severe enough that it could have been picked up by prenatal ultrasound, but the mother's prenatal care was spotty and I don't think she had a prenatal ultrasound. Biscuits brother, thanks for the thoughts, and my condolences for your loss. As you know, there are lots of different opinions on how heroic to be with premature babies.

11:34 AM  
Blogger Biscuits Brother said...

Lost another at 28 weeks, but now have a perfectly healthy 8 year old girl born at 26 weeks. I'm constantly reminded how lucky we've been with her.

Biscuits Brother

2:46 PM  
Blogger That Girl said...

I think it really does have to do with the age difference between the two choices.
Logically, if you decide that (when your child is 4) you dont want to be a parent you should be able to send the child to foster care or put them up for adoption the same as if you had decided it at birth. But people rarely (if ever) do this. (non-withstanding the passive-agressive version of just being crappy until they die/get taken from you)
Connection/attachment to our children is not an automatic thing, which is why so much is made of "bonding with your infant."
I am pro-choice but when our perinatologist recommended abortion I couldnt do it - I had already become attached to the idea of this child.
We were also offered comfort care as an alternative that we didnt take.
It was an unexpected pregnancy though, and if we had learned before we adjusted to the news - at say, the first doctors appointment, that our son had these issues we probably would've aborted at once.
So attachment really is all. I think that this idea extends to a lot of human interaction, not just how we decide who to save.

3:53 PM  
Blogger neonataldoc said...

That girl, I agree it has to do with the age differences. But I'm just not sure if that is acceptable.

2:21 PM  
Blogger Judy said...

There is a third option, but it is often more difficult than either of the 2 you presented. It is not ethically different to discontinue life support than it is never to have started it. I am lucky enough to work in a NICU where the physicians are committed to this principle. Virtually all preemies of 23-24 weeks gestation are resuscitated and started on life support in the NICU where I work. If the odds are playing in the baby's favor and things are going well, there is never a discussion of discontinuing life support -- and it becomes less and less appropriate to even think about it. If things aren't going well, it is likely that there will be a discussion with the family of whether it is appropriate to discontinue aggressive efforts.

Parents appear to have greater difficulty in deciding to discontinue life support than in choosing not to start it. I don't know how much of that is a growing attachment to the now born baby and how much is that those who would have less difficulty discontinuing life support are more likely never to start in the first place.

12:30 AM  
Blogger Flea said...

But there is a discrepancy, and I can't quite figure it out.

There's a deceptively simple answer to your (implied) question.

It's size.

It is an element of human nature for us to place less value on the smaller and weaker among us. I wish it weren't so, I'm get no joy from saying so, but it appears to be true.

Add familiarity and you have your answer: Size, strength, and length of time you've known the child.

best,

Flea

7:31 PM  
Blogger jennmit said...

One factor that also should be considered is the child's ability to speak for him or herself. In the case of the 8 year old child, the parents at least have the potential to explain what is happening, and the child can say "okay" or "no more mommy". A neonate does not have a voice of their own and therefore no choice in the matter. That fact alone is enough for some parents to decide to stop a rescusitation or to discontinue invasive care.

I have been an NICU nurse for 7 years in a large, nationally recognized Level 3 NICU where we routinely provide care for 23-24 week infants. As a nurse,I am seldom privy to discussion with the parents prior to the birth of their preterm or ill child, but am often the person that they see and talk to for hours at a time after. Many times parents ask me what they should do because they have no frame of reference to make a decision about thir child's care (my hospital's approach is similar to what judy describes). My response to that question is always the same. I tell the parents that I have never been in their position and cannot give advice as to the best decision. I help them to get a full and accurate picture of their child's situation including facilitating conversations with doctors to help them make an informed decision, and then I tell them to go somewhere private, away from the hospital, and have an honest conversation with each other about their values and beliefs, to imagine making different choices, and how they feel about each, and then to decide what to do outside of the influence of any other people. My belief is that it is important to respect the fact that they have live with the decision that they make--not me, and they need to make it on their own. I am concerned about the paternalistic attitude I see in many of my collegues, both doctors and nurses, to try to guide the parents to make the "right" choice--which varies based on the point of view of the practioner. The end result of my approach seems to be evenly split between withdrawing or continuing care, but the real benefit seems to be in the parents comfort with the final outcome--either "we gave him every chance we could" or "at least he didn't suffer unnecessarily", or "he may have problems, but he's my baby and we'll manage". I have seen too much to believe that I have all the answers, and the longer I do my work, the more questions I have about bioethics. I don't believe there is a "one size fits all" approach that will work simply because everyone involved comes to the table with a different set of expectations and beliefs and no two situations are exactly the same.

Thanks neonataldoc for blogging on this topic because it warrants more discussion as science pushs the envelope of what is possible and the question increasingly becomes "We can...but should we?"

1:28 PM  
Anonymous Anonymous said...

I recommend your reading Peter Singer's "Should the baby live?"
Michael

6:18 PM  
Anonymous Anonymous said...

As the mother of a baby with Trisomy 21 I find Peter Singer's ideas abhorrent. His definition of quality of life is absolutely ridiculous...he advocates actively killing newborns who are not "perfect" in his eyes because they may not be able to, for example, play the guitar (Although many people with T21 are musically talented and do play instruments).


I do appreciate reading thoughts on this topic while contemplating a future pg. and possible preemie due to incompetent cervix. The discussion is thought provoking.

1:39 PM  
Anonymous Mandy said...

By 24 weeks, I had already developed a very deep attachment to my daughter. I loved her very much and it was not uncommon for me to sit and think about that little baby and about how lucky I was to have her and cry. I simply cannot imagine any parent not choosing to fight for their child's life, no matter what it's age.

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