Insular
by Chris and Vic
Although we share ideas and advice and offer group support on-line via blogs and support lists, we are known in the family of nations as American individualists. The history of the American colonies necessarily demanded this “rugged individualism” and pulling oneself up “by our "boot straps”. This is our ethic and our culture.
Contrast American individualism with the emphasis on community or “common good” in certain Eastern countries. The good of the many largely supersedes the good of the one and is reflected in the culture and in the law. This is the philosophical underpinning of “socialism”.
Herein lies the backdrop for an ethical question:
When we consider the resources needed to support the life of one of our medically fragile, high-risk and high-need preemies, do we ever consider how much could be done for entire communities or age groups with the resources that are now spent on one preemie?
This question has been stated in other ways. For example, How many children could be immunized or receive free or subsidized school meals with the money spent on the medical care of a single preemie in the NICU? One of the medical bloggers had a campaign to buy mosquito netting for countries where malaria is a community health issue—So, how many nets could be purchased with the funds used on one preemie in his or her first year of life? How many poor Americans could get health insurance for a year (estimate $6000) if preemie hospitalization expenses were redirected to that cause?
Next question: Does this move us? Would we agree to it? That is, the good of many should be placed above the good of an individual?
We have debated on this blog, and elsewhere, that parents should have the choice . . . Could we fathom that the community, not the parents, would make a decision that would limit or redirect the considerable resources spent on a preemie?
Does anyone have any experience with this type of ethical dilemma? Has anyone ever been part of a group that decided that the good of the many, in terms of medical dollars spent, should be placed above the good of the individual?
260 comments:
«Oldest ‹Older 201 – 260 of 260What a wonderful comment future of hope. Thank you for your insight.
I can only hope my children will be as "teensy" bit obnoxious as your ds!
You're right, most of us agree with informed parental consent. At one point I could not grapple with the choice not to try resuscitation, but I am coming to an understanding and truly believe parents should have the right to choose. I have repeatedly admitted that the emotional focus on my specific children made it difficult for me to understand not attempting medical intervention, and now that I looked beyond my children I can appreciate that people have other opinions, and they are not necessarily wrong.
Where things get tricky for me is the insinuation that those who are ok with their choice to initiate care are either in denial, mad at the world, or are terrified they won't be able to care for their potentially disabled child/ren. I disagree that those with disabled children "assign value" to them. The things I disagree with here are less about prematurity and gestational age and more about the anti-disability sentiment that I find grossly unacceptable.
23wkstwinsmommy - I think that what you have said about being scared is so valuable. Its so totally normal to be terrified by this whole scenario, for exactly those reasons you have outlined.
I can't help but feel that anyone who claims they aren't scared, are either lying, or simply haven't thought things through.
Thank you for your candour!
23wktwinsmommy wrote:
Where things get tricky for me is the insinuation that those who are ok with their choice to initiate care are either in denial, mad at the world, or are terrified they won't be able to care for their potentially disabled child/ren. I disagree that those with disabled children "assign value" to them. The things I disagree with here are less about prematurity and gestational age and more about the anti-disability sentiment that I find grossly unacceptable.
AGREED - 100%. There is really nothing that I can add here. There is no such thing as perfection, life is what it is, and it is up to us and our children to decide what we are going to make of it.
From Helen Harrison
to various recent posters:
You keep talking about opposing sides.
For the record,I strongly believe and support the right for informed parents to have choices about resuscitation and treatment below 26 weeks.
Although I wouldn't personally choose it for a child of mine, I see no problem with others making that choice.
When I refer to terrified new parents I am referring only to those who try to "shout down" the follow-up information on preemies because they don't want to hear it and then proceed to attack the messenger.
If you are not one of these parents, and if you have no problem with parental choice in <26weekers, then we are not on "opposing sides."
Helen
Helen Harrison to
23 week twins mommy who said:
"I disagree that those with disabled children "assign value" to them. The things I disagree with here are less about prematurity and gestational age and more about the anti-disability sentiment that I find grossly unacceptable."
***
I don't recall anyone on this blog ever "assigning value" or, for that matter, not assigning value, to their disabled child. Can you give some specific examples of what you mean?
I, and most other people, are, however, definitely against disability. Disability, by definition, means that one or more ability(ies) important for normal life cannot be performed. This is often, if not always, detrimental to the person who has the disability as well as to those who must care for this person. Being unable to see, hear, think, walk, digest or breathe normally, etc., have unfortunate consequences -- and in preemies it is common for several, if not all, of these disabilities to coexist. Who, in their right minds, is in favor of this?
This *is not* the same as being against people with disabilities, which I am definitely not, having cared for my own dearly loved multiply disabled son for decades.
No one here has ever expressed views against disabled people that I can recall.
Helen
To Helen:
I am very confused by your latest comment re: disabilites. On a lot of points I agree with you, I think... If you are saying that a disability is nothing to wish for, or aspire to have, then that makes perfect sense. If you are stating that reasonable people should take common sense steps to attempt to reduce the chance of a disability, then I also agree.
What I do not agree with is your opinion that a disability in and of itself destroys a person's quality of life. It changes their life, and the lives of those around them, but it doesn't have to destroy them. Would most diabled people choose to be "normal" if they could? Probably, I know that my son would. Would most disabled people prefer death over life as a disabled person? I can't speak for the disabled community as a whole, but my best guess is that those who would are probably in the minority, or suicide rates would be much more skewed. As for my son, no, he would not. Does he have anger at the unfairness of it all? You bet. Do I? Of course. The fact is though, is that he is not " a multiply disabled individual for whom I provide care". He is my son, with whom I share my life.
From Helen Harrison
To Future of Hope who said:
"What I do not agree with is your opinion that a disability in and of itself destroys a person's quality of life."
***
I have never said any such thing.
Many of the problems on this blog come from people inventing statements I have made and then attacking the statements they themselves have invented.
What *you* have state above and ascribed to me is simply not true.
Helen
From Helen Harrison
To various commenters:
I also understand that
Mark Miller, the father in the "Miller Case" will soon be coming on the blog to counter another false accusation made here --this one by "TPD" -- who stated that the Miller family's case was a suit over "wrongful life."
Helen
Just got a chance to get on here. So sorry for the delay in answering these questions.
The assigning value is a belief stated my micromom I believe her post name was and this is what she said:
"I also agree with C&V when she said that alot of times we as parents, caregivers etc assign value, etc to our kids lives because it makes US feel better."
As far as "anti disability" when I say this I am referring to those who believe a disabled life is not worth living. I am upset by the constant comments that the disabled are a "burden" on society, their families and the education system. They are people with feelings. Is life more difficult for them and their caregivers, certainly. But just because you can't walk or breathe well, does this mean you're better off dead? Those with disabilities are often defined by their disabilities and in doing so, I feel there is an either unintentional or intentional attempt to dehumanize them. There are plenty of disabled children and adults who are fully capable to reading and understanding what is said about them here and I can only imagine how it makes them feel.
And since someone else brought up how some of us decided we should email Ms Rosenthal about her article and Nancy mentioned that some in Narof decided to give her emails of support, I'll leave you all with this quote from her. This statement brings to light the tone that can be found here, even if these exact words weren't uttered by anyone on here.
"We need to commit to those we can help become productive contributors of society. Let's endow those who have the physical and mental capacity to make the most of the incredible miracles of our age and stop investing in lost causes because we can."
From Helen Harrison
To 23 week twins mommy:
Unfortunately, disabilities *do* create problems for individuals, families, school systems, the medical system, and society in general. Not discussing these problems does not make them go away or fool anyone.
Should we stop the MOD campaign for prenatal vitamins and prenatal care because it implies that prematurity and disabilities are "bad?"
Should we lie or withhold information to prospective parents about the outcomes of preemies so that they will always opt for resuscitation and treatment ... because anything less will make us (who may have decided differently) and our children "feel bad"?
Should we lie/withhold information from new parents of preemies so as not to upset them, or perhaps, one day, their children?
I don't think so.
Instead, I see these concerns as another case of political correctness run amok.
I do not entirely agree with Ms. Rosenthal's statement as it is presented here *without context*, and without the important qualifications she later made, qaulifications which I felt were implicit in her original piece.
Nevertheless, Ms. Rosenthal was targeted with hate mail of the most virulent sort and subjected to creepy threats. Her employer was likewise.
A few of us at NAROF wrote to her after these attacks became known to us -- I'd never heard of her before then-- to let her know that not all parents of preemies were so filled with hate, fragile egos, and defensiveness.
Here is another quote from Ms. Rosenthal from the article she wrote in response to the hate-mail campaign:
"Let me state clearly, I don't wish your children dead, a condition over which I was accused too many times to count, nor did I ever. I believe this is another issue of choice...Whether to give birth or save a baby brought too early into this world, is the decision exclusively of the mother..."
I agree.
Helen
Helen, It is amazing, but you find a way to insult those people who basically agree with you. Someone offers you an olive branch and you whip out the pruning shears to snip it off, taking the person's hand off in the process.
Actually, truth be told, my issue isn't so much with the message but with the messenger (I do have some issues but either I have failed to articulte them in a way that would generate meaningful discussion or you just don't want to discuss anything other than studies)...Frankly, it bothers me Helen that you are the self-appointed spokesperson for parents of premature infants. To me it's like leaving a woman with raging post-partum psychosis alone with the kids.
You brought Mr. Miller into this discussion. Whatever my opinion might be after learning more details of his case, I wouldn't share it, nor was this discussion ever about him. I take issue with you--your insufferable presumptions about life and disrespect for people who offer you anything but praise.
It's TPD in the previous post, I forgot to type my identity.
TPD here. I also did not say that any particular case was a suit "over 'wrongful life'". I don't even know about any particular cases except what you posted about, Helen.
I did say that there are many causes of action that can be brought against a doctor, and the elements of those causes of action must be proven as well as damages. Certain damages are just morally problematic in my opinion. Take compensation for the cost of caring for the child resuscitated against parents' wishes; parental pain and suffering, etc. The calculations of these types of damages are generally based on a comparison to some sort of "normal" state. In the case of severely premature infant, that means calculating damages based on a comparison of on the one hand being dead, and on the other hand being disabled. That's not a legal question, it's a metaphysical one! So does that make it more clear why I find your ease of dismissing such concerns a bit troubling?
Contrary to what you have gleaned from my posts, I have been trying to stick to the topic and raise pertinent issues. It really *does* go back to the topic of the original post - the value of one life.
TPD here (again).
Oh, and you didn't merely dismiss that issue - you called me "stupid."
200+ years of jurisprudence and the issue has become less settled not more, and the issues have become more and more complex - yet for you Helen the answers are so simple.
Helen,
As for Ms Rosenthal, IMO there is no context or qualifications that makes what she said about the disabled warranted.
And just for the record I did not send her hate mail nor send her any creepy threats. After she emailed me with a simple thank you for your thoughts, or something like that, she received nothing further from *me.* I felt it was like writing a letter to the editor, just highlighting what I found problematic with her piece. I'd be more than happy to recreate my personal email if need be.
I have no issue discussing how difficult life can be with a child or children with disabilities. I don't attempt to hide the truth nor do I expect anyone to lie or sugar coat anything. I have no problem discussing the long term effects of prematurity. What I have a problem with is the value judgements that are made with regard to those with varying degrees of disabilities.
I have never said having a disabled family member wasn't challenging, or heartbreaking for that matter. I quoted and used the word "burden" on purpose because it's been used here before. It goes back to the tone that is ever present here. If you want to think it's 'political correctness run amok,' then so be it. But I personally see value in using words that are honest, but also sensitive and treat people with dignity.
From Helen Harrison
To Anonymous "TPD" who said:
"Oh, and you didn't merely dismiss that issue - you called me "stupid."
***
No, re-read the posts, I called your insults directed at me (for, in *your* words, advocating genocide,"wrongful life" suits, etc.) stupid.
Helen
Oh boy, TPD's got out her BarBri flashcards again. You really aren't clearly articulating your position with this audience. Maybe that sort of thing would fly on the boards at greedyassociates, but here no one really cares what cause of action is applicable. The only purpose most of your posts serve (intended or not) is a sort of hysterical antagonism. For what it's worth, litigation over preemie syndrome would be extremely difficult, because there are so few generally accepted standards of care and THAT is the real problem.
I was watching a rerun of Frontline last night on medicating children with psychiatric drugs. One of the psychiatrists suggested that they follow the model set by pediatric oncologists: you simply can't get treatment unless you are part of the research about childhood cancers.
It would warm my soul if neonatology would just admit that they aren't really sure about the ramifications of the treatments they use, that they know some could have harmful effects, and that they want to follow EVERY NICU graduate long term, so they can find out what works and what doesn't.
I can't see anything but improvement in treatment coming from this kind of knowledge. And ultimately, if the treatment is better, I am sure that the immediate costs of all the tweaking and compensating for other treatments will grow less. But best of all, the long term impacts of the treatments would improve, less disability, less struggle for our kids and us, less "burden" on society. . .
Am I really being too naieve?
Trish
From Helen Harrison
To Trish!
Thank you so much! You've got it absolutely right!
Helen
"here no one really cares what cause of action is applicable."
I believe that is true. Yet, the threat of legal action has historically been an effective way to shape physician's actions, and based on what Helen has said, she supports legal action to rein in the neonatologists' tendencies to ignore parents' wishes not to rescusitate or not to treat at all. So I think it makes sense to look at the ramifications of such legal action - especially the negative ones.
"there are so few generally accepted standards of care and THAT is the real problem."
I agree that is a problem. It's a different problem really than I am highlighting, but no less important. I am more focused on the ethical issues and maybe what many consider to be not core to the "real" issues. I guess everyone has a different focus, and that's why getting so many points of view is valuable. One point of focus doesn't have to be dismissed as hysterical to make room for discussion of another point of focus.
Yes, I take issue with Helen because I believe she is too single-minded and willfully blind to anything not within her laser sights. That doesn't mean I disagree with everything she says, just that I might also place emphasis elsewhere. I think this place has enough "yes"-people in support of whatever Helen is in support of. When an invitation to discuss a controversial topic is extended, how boring would it be if everyone agreed on the exact point of focus, and everyone had the same views of what to do.
Perhaps you will post more about the standards of care issues. On a personal level, I noticed glaring differences between hospitals - my two children were born at different hospitals, in different states, with vastly different NICUs. I was really surprised to learn that so much of neonatology is "turf"-based. Big egos, trying to get money and retain talent...basically not much different from a business perspective than more mundane businesses. But so much more at stake. Unfortunately, we do not think of ourselves as "consumers" of health care, and often do not know what our rights and choices are. Even when we do, the labyrinth of doctors, insurance forms, etc., is overwhelming.
I guess I think it's inherently necessary to look at outcomes to try to see what works/worked and what doesn't/didn't. I don't see much controversy about that. That seems to be happening and there seems to be a lot of motivation/competition to improve outcomes.
That was TPD previously.
I also think standard of care changes so fast in the field of neonatology, and in so many small ways, and there are SO many differences in the baseline population (there is no one-size-fits-all 30 weeker, for example), as to be hard to pin down to a legal or even medical certainty.
In this field at least, as a patient (parent of a patient) I would more appreciate trying a new approach (assuming it is evidence-based), even if it did not conform to the current "standard of care."
For example, I recently read something indicating that the latest research shows that theophylline (sp?), long used to stimulate breathing, is inferior to caffeine (theophylline actually showed negative developmental consequences while caffeine seemed to improve things). Yet, even while this research was being conducted and most of the evidence was already there to be seen, theophylline remained the standard of care. NICUs using caffeine were essentially experimenting (though with evidence to support it).
My son, born 2 years before my daughter, received caffeine exclusively. My daughter received theophylline. When I questioned this at my daughter's NICU, I was told that caffeine was not universally accepted, they were "sticking with what worked before" (ie, sticking to the "standard of care.") It is safe to stick to the standard of care in neonatology from a legal viewpoint, but often results in damage being done. I think a similar thing could be said of steroid use.
Absolutely NICU grads should be followed long term. I asked our NICU follow-up team why they were only following our children until the age of three. They didn't have an answer, but did say there is a study currently going on with 200 23 weekers who are just now turning 2 but are suppose to be followed long term. I am not sure of the deatils and of course the name completely escapes me, but I think it would be extremely beneficial to follow all kiddos MUCH longer than 3.
Something of concern regarding competition is the appeared reluctance to diagnose/identify a disability in a child under 3 by our NICU follow-up. The beginning of our visit was "he doesn't scream CP" "transient dystonia" "low tone." After my constant questioning and pushing for some straight answers I finally got "we can't rule out mild CP." A parent not informed could have easily left that visit thinking his/her child was in the clear. I felt this was wrong, and although am thankful I have already dxed my son and can now appropriately deal with it, it made me upset to think about another family who would have so much hope and put so much trust in these specialists.
I wondered if they wanted to avoid labeling my ds with mild CP because if they could just get to age 3 without the dx it could improve our particular hospital's stats on the number of children dxed with CP by age 3?
I really respected our NICU with respect to informed consent and parental involvement but I was a little concerned about our NICU follow-up experience this week (which does not include any neonatologists from our NICU but rather a local pediatrician and the developmental specialist from our NICU.)
23wktwinsmommy wrote:
I wondered if they wanted to avoid labeling my ds with mild CP because if they could just get to age 3 without the dx it could improve our particular hospital's stats on the number of children dxed with CP by age 3?
With the politics of medicine, that could very easily be the reason. It is possible however, that they were hesitant to diagnosis because he is so young and they just can't be sure. It is possible for toddlers to have transient dystonia, and mild hypotonia due to a still underdeveloped nervous system (i.e. "preemie syndrome" - much as I hate the term) and still have normal physical development by the age of 4 or 5. It is equally possible that these are the signs of mild CP. It could be that the doctors are simply hesitant to label him with a DX that will follow forever if they are not sure. Either way though, I agree that they should have been much more forthcoming with their findings and suspicions, without you having to play "20 Questions".
Helen Harrison
To TPD who said:
"based on what Helen has said, she supports legal action to rein in the neonatologists' tendencies to ignore parents' wishes not to rescusitate or not to treat at all. "
***
No, once again you misstate my position. In general I don't support litigation and do my best to prevent it. It is usually a lose-lose situation for all concerned, negative ramifications all around.
I do support neonatologists' honoring parents' rights to informed consent to treatment. I see nothing but positive ramifications here.
***
TPD also states: "
Yes, I take issue with Helen because I believe she is too single-minded and willfully blind to anything not within her laser sights."
Can you get past the insulting generalities, "find your voice," and tell me what, specifically, you take issue with?
Helen
Helen Harrison
To TPD who said:
"It is safe to stick to the standard of care in neonatology from a legal viewpoint, but often results in damage being done. I think a similar thing could be said of steroid use."
***
The steroid story actually shows that innovation isn't always good and that sometimes sticking with the old "standards" is better.
Steroids were introduced into NICU care in the late 1980s, without proper testing for safety or efficacy. They were promoted as miraculous drugs that could save the youngest preemies. In fact, the (unwarranted) optimism over steroids helped encourage doctors to provide ever-more-aggressive care at lower and lower gestations.
Everyone wanted the quick steroid fix for his/her preemie, because the short-term improvements (getting off the ventilator a bit earlier) seemed so impressive.
Then, belatedly, the longer term outcomes became apparent -- a much higher rate of CP and developmental disorders, infections, long-term lung problems, poor brain growth, poor growth over-all, immune abnormalities, and ...well just about more of every ill that preemies are subject to.
Also belatedly, carefully conducted randomized controlled trials (which should have been done well before steroids were ever introduced into widespread use) showed the risks and dangers far outweighed any marginal, highly debatable, benefits.
Those who refused the glitzy new treatment in the 1980s and relied on the old "standard of care" were actually better off.
Caffeine was also introduced without testing for safety and efficacy. There were many concerns about it, because, caffeine and related drugs such as theophylline, plausibly, can cause brain damage. But when randomized controlled trials were finally conducted, the results of caffeine use for apnea looked positive.
However, researchers involved with the caffeine study still urge caution because the longer term follow-up has not yet been conducted.
From a legal stand point, none of this matters, apparently, because it is rare that anyone gets sued over NICU therapy. Since there are no real standards in this area, and therapies come and go before they can ever tested, and because there are so many possible contributors to long-term damage in NICU care, just about anything goes. Almost anything -- or nothing -- can be called "standard NICU care."
The take-away message here, I think, is that "newer" is not necessarily better, and that randomized controlled trials of interventions on preemies, with long term follow-up, should be conducted before treatments are introduced into the nursery (and into medicine in general).
In addition, the whole panoply of "old", but never tested, NICU therapies needs thorough investigation.
Helen
"The take-away message here, I think, is that "newer" is not necessarily better, and that randomized controlled trials of interventions on preemies, with long term follow-up, should be conducted before treatments are introduced into the nursery (and into medicine in general)."
I agree to a point, but I think it's an impractical approach. While over-use of treatments (too much of a good thing) is definitely problematic, sometimes it's not prudent to wait to change course when there is reasonable (but perhaps not overwhelming) evidence to support the change. As in the example of steroids, it depends on which snapshot in time you look at as to whether following standard of care helped or hurt babies, and again there are also sticky issues about whether it's better not to live or to live with disability caused by life-saving treatment.
I think some flexibility is called for, but I don't know how to implement it in practice.
"In addition, the whole panoply of "old", but never tested, NICU therapies needs thorough investigation."
I definitely agree here too. Everyone would benefit from that. I guess the data set to look at would be follow-up outcomes.
As with seemingly every issue in neonatology, this is also fraught with pitfalls...there are SO many variables at play in human development, and as kids grow older it is even harder to define a cause-effect relationship. Though I do think some things will be easier to quantify. Things with fuzzy causation are learning disabilities, coordination problems, behavioral issues, sensory issues, etc. What are often referred to as "minor" problems, although I am not saying they are minor.
TPD here (and above). I do have two former premature babies--one now 6who was born at 27 weeks and one now 4 who was born at 32 weeks. I don't know how exactly they were affected by their prematurity. I'm sure there were effects, but thankfully since discharge from the NICUs we have just dealt with what I would consider run-of-the-mill issues that every family deals with.
The future is uncertain for all of us. The NICU experience really drove that point home in a very uncomfortable way. I think I continue to try to make sense of the seemingly randomness and unfairness of this, especially as it applies to children. They do not deserve the suffering, and they deserve to just be who they are *right now* no matter how many weeks they were when they came into the world or how that affected them.
For anyone interested, Miss Iowa, Abbey Curran, will be competing in tonight's Miss America Pageant on NBC. Miss Curran has cerebral palsy and is the first contestant with a disability to compete in the pageant.
Helen Harrison
To TPD who said:
"I agree to a point, but I think it's an impractical approach. While over-use of treatments (too much of a good thing) is definitely problematic, sometimes it's not prudent to wait to change course when there is reasonable (but perhaps not overwhelming) evidence to support the change."
***
I think introducing new therapies only with randomized trials(and testing dubious old ones in a similar manner) is the only ethical and responsible way to proceed.
When a new therapy is proposed, some babies should be randomized to receive it and some to receive a placebo. Ideally, doctors, nurses, parents, and follow-up personnel should not know which is which until the research is over.
This doesn't mean, however, that no
one is overseeing the research. If one approach looks clearly preferable to the other in early- to mid-trial, the trial is stopped and all babies get the apparently more successful treatment.
(Babies in randomized control trials, by the way, do better than babies receiving normal NICU care *whether or not* they are in the control or the experimental group. Perhaps it is because all babies in formal research projects get closer attention from the MDs and nurses.
The consequences of not providing such evidence-based medicine is well documented in Shannon Brownlee's excellent book "Overtreatment."
Helen
"Miss Curran has cerebral palsy and is the first contestant with a disability to compete in the [Miss America] pageant."
Except for the deaf Miss America. :-)
Kathy I thought of that, but then I thought maybe I was mistaken because the media said she was the first. I don't usually watch it so I wasn't sure. So the second :)
I guess it all depends on what you define as disability, and what disabilities make a difference in a beauty pageant, oh, excuse me, a scholarship competition. ;-)
AHA! It's not a confusion about disabilities, it's confusion about pageants! Tonight is Miss USA. Miss America, which had a deaf winner, was a few months ago.
The Future of Hope said: "The fact is though, is that he is not " a multiply disabled individual for whom I provide care". He is my son, with whom I share my life."
Who were you quoting here? If you were trying to quote Helen Harrison, her statement was:
"This *is not* the same as being against people with disabilities, which I am definitely not, having cared for my own dearly loved multiply disabled son for decades."
The words you seem to be attributing to her have a very different connotation than what she actually said. This particular instance is a minor, but please exercise care when quoting.
I have been following this particular thread and comments with much interest and have given my two cents from time to time. I think the discussion has come full circle. But wanted to share a quote from a book I’m presently reading because it somehow resonates with our “preemie” community. The name of the book is The Audacity of Hope. I’m a sucker if a book has a gripping title. (My previous read was Walk back the Cat.)
Anyway, the quote reads “we have a stake in one another, and that what binds us together is greater than what drives us apart, and that if enough people believe in the truth of that proposition and act on it, then we might not solve every problem, but we can get something meaningful done.”
I believe this proposition, especially when it comes to our views collectively as a group. We all agree that parents need to be fully informed and should have a right to choose how they want their child treated medically (be it comfort care or resuscitation) and that long term follow-up is desperately needed for these preemies. There are many other points and problems with the NICU that could be added to the list that we agree on but I guess the question is where do we, the parents and voices of these remarkable kids, go from here? How can we make a difference in the lives of future preemies and our own? Because like the title of that book, I believe that we all possess the audacity to hope.
-Tammy-
Going back to the original question Chris raised on this thread. . .
"When we consider the resources needed to support the life of one of our medically fragile, high-risk and high-need preemies, do we ever consider how much could be done for entire communities or age groups with the resources that are now spent on one preemie?"
As a mother to 2 micropreemies with significant issues, I have pondered this question quite a lot. I am amazed that while money pours into NICU care, after the NICU, the services are so very difficult to obtain, if at all.
Several years ago, as my daughters were approaching adulthood, I did look into alternative care for one of my daughters outside of my home. It was dismal. One of the institutions (or more politically correct "LTC facility") I had checked out was 2 hours from my home. I wanted to see it, as it was renowned for providing high-quality care to a very well-known presidential family member. The place was horrible - paint peeling from the walls, dated everything - was like stepping back into the 1950's. .the room where my daughter would reside, was awful - others like her sprawled out on recliners, little stimulation from what I had seen. Another facility same thing. .
I had 2 prevailing thoughts - there is no way in hell my daughter is going to end up in a place like this. And secondly, what a CONTRAST to the glitzy glamoury high-tech neontal world that insisted on saving her life.
Someone mentioned that NICU's are popping up everywhere due to the fact that they are such money makers for the hospitals that have them. What if each NICU was required to put 10% of their profits into respite care? Or special education? Or housing grants for parents whose child needs w/c accessiblity? Or equipment?
Or - LTC facilities specially designed to meet the needs of preemie survivors. .they could be called "Preemie Aftermath Facilities". .ok, I'm being facetious. However, it IS a thought. If neonatologists and our government are hell-bent on saving preemies regardless of the wishes of the parents, and there are large profits being made off our our children, then there needs to be accountability long-term. Our survivors should have the very best care available to them LIFE-LONG.
Wow! I so agree with you, Terri/2.
Most of the long-term care facilities for the disabled in our state have been shut down, but there is still one I know of three hours away. Many special needs adults now are housed in community-based facilities, but our adult preemie would not qualify for that, because his disabilities are too severe. I also understand that waiting lists are long. The only current alternative I see would be a nursing home.
Perhaps, with your idea of NICU profits support plus the formation of a nonprofit preemie survivors group similar to the March of Dimes (maybe MOD can branch out here!), we could have annual walkathons and campaigns to raise funds to pay for top-notch, longterm care facilities where we know our children will be well cared for when we can longer care for them.
I like the way you think!
Maybe the foundation could be called something like "United Preemie Survivors."
From Helen Harrison
To Terri and Anonymous:
One of the saddest comments ever made to us was from a woman from the court who comes out to check on Ed periodically since he is an now an adult and we are his legal guardians.
We showed her his room which has a good deal of video and audio equipment, many keyboards, books, tapes, CDs.
She warned us against giving him "too good" a life, because this would just make the ultimate downgrade(when we die and he must be institutionalized) even more tragic for him.
***
There is also the not-so-small point that Ed is highly uncomfortable around other children/adults with disabilities. This is because they often act inappropriately and randomly, and they make too much strange noise -- Ed has the usual preemie noise phobias. Being with other disabled children/adults really freaks him out.
For this reason, we are going to move heaven and earth to keep him at home for his entire life if humanly possible. I wish everyone had the luxury of this option. I'm not even sure we do, realistically.
I feel that not only should NICUs fund a good chunk of the ongoing care of the babies they save, but that neonatologists should spend a month or so every year working in group homes, nursing homes, and other institutions for the preemies they feel compelled to treat at all costs.
Helen
Helen said:
"I feel that not only should NICUs fund a good chunk of the ongoing care of the babies they save, but that neonatologists should spend a month or so every year working in group homes, nursing homes, and other institutions for the preemies they feel compelled to treat at all costs."
I agree with you entirely and have said the same thing for years. .neonatology would be far more compassionate if the nurses and docs had to spend time with the survivors with disabilities. It would make each and every one of them more well-rounded with insight they cannot possibly have without seeing these kiddos and their families 3, 5, 10 or 25 years later. . It's one thing to tell new parents that "we just don't know how they will turn out" or, "preemies ususually catch up by age 2". .and totally another to see reality for oneself.
Helen Harrison to
Terri w/2:
I'm just reading through the abstracts of the presentations to be given at SPR (Society for Pediatric Research)in Hawaii next month. I'm not sure I'm allowed to quote from them yet, so I'll wait a bit, but...
They are posted at at the conference website. I'm not sure if you have to be a conference registrant to see them. You *do* have to register at the site, however.
http://www.aps-spr.org/
One of the studies to be presented by DeBattista et al. from Stanford is entitled "Dispelling the Myth of Developmental Catch up for Children Born Prematurely."
Helen
Going back to Chris' original post where she asks if the good of an individual should be placed above the good of many...referring to the high cost of saving preemies, many of whom have lifelong disabilities.
When some commenters suggested that perhaps the profits of the NICU could be used to improve care or develop longterm outcome research, another commenter (Dr. Clay?) said that without the profits of NICUs, cardiac and GI, some academic medical centers would have to forego infectious disease and neurology departments.
So, it seems that the "good" of the many older preemie survivors is getting bypassed for the "good" of perhaps fewer numbers of patients in less-profitable areas.
Now, I have to wonder what med centers did with infectious disease and neurology departments prior to the entrance of NICUs.
I also suspect that many NICU survivors become neurology patients.
I really don't think we will ever see NICUs funding longterm care, but if they can fund infectious disease and neurology, then why NOT longterm care facilities that are adjacent to the medical centers? Preemies could get top priority on the waiting list. NICU staff could visit and learn firsthand about outcomes, and the preemie residents would have close access to the best medical care.
As the mother of a 24 week preemie with bilateral grade 3 brain hemmoraging, heart defects, and respitory disease who is now almost 3 years old this is a difficult question to answer. We had insurance when our child was born, but the policy maxed out at $1,000,000. Luckily Medicaid covered our copays and the rest of the bills (past the million). Without medicaid, we would have been bankrupt and had much more stress. I'm glad that the masses "agreed" (through legislation) to pay for my child to receive excellent medical care. He is now a healthy child (with a shunt and asthma) who has an above average IQ for his age and who is kind and loving. His father and I considered taking him off life support when he was septic and suffering from hydrocephalus and too fragile for surgical relief. Imagine what we would be missing - and what society could potentially be missing. The cost of medical care today is outrageous and needs to be curtailed, but in the mean time, all people, no matter how fragile, deserve access to excellent care - especially people who's potential is unknown.
As an aside to this whole issue, a new study just came out in the New England Journal of Medicine which looked at preemies born between 22w 0d and 25w 6d gestational age, and tried to find factors which would favor survival and impairment free survival.
Of the babies studied, 73% either died or were "impaired" at 18-22 mos. Impairment was defined as a score of 70 or below on either the Psychomotor Developmental Index or the Mental Developmental Index of the Bayley Scales of Infant Development (on a scale of 50 to 150, with 150 indicating the most advanced development), moderate or severe cerebral palsy, bilateral blindness, or bilateral hearing loss requiring amplification.
61% either died or had profound impairment (untestable on the Bayley - a score below 50, or motor impairment so severe they required an adults help to move).
From Helen Harrison
To Kristie:
I think it will be good that this information is going up on a website where parents-at-risk can see it *before* they land in the delivery room. This will give them time (on their own turf) to think about "what ifs"... and what they might want done, or not done.
I haven't yet visited the site, but what seems to be missing from the study data as I read it in NEJM, as well as the reports about it in the press is the acknowledgment that many ELBW children *not* diagnosed with impairment at 18 to 24 months will still have serious disabilities that cannot be reliably diagnosed at that early age, autism for example.
Still I applaud the effort to get hard data to the people who need it most -- the families!
Helen
To Helen:
I was thinking the same thing. I can only guess that the numbers will look worse if they follow along as these kids get older. Some of those extremely impaired kids are going to die, and many of the "normal" kids are going to end up with learning problems, autism, etc. I hope we get to see those numbers at some point.
-Kristie
From Helen Harrison
To Kristie:
A forecast of what the NICHD might find can be found in the data to be presented next month at the Society for Pediatric Research Conference on the 11-year-old data from the EPICure Group (all <26 weekers).
The abstracts are now up on the SPR website, and you can pull them all up by doing a search on EPICure. I think you can get this material without actually being registered for the conference, but I'm not sure.
Essentially, what they've found is that at age 11 the children have an 86% impairment rate. The rate of autism is about 8% (severe) compared to 0% among the term control group to 18% (with less severe ASD). The authors point out that the rate is probably underestimated in this study since there were many non-responders to the autism evaluations and most of the non-responders were families with the most severely impacted children -- the ones who are the most likely to have autism symptoms.
Helen
Yesterday, on public radio, I just caught a few minutes of an interview with someone who was making the same points we are making for the soldiers coming back from the Iraq war: lack of follow-up; abandonnment by the healthcare system for lifelong issues; counting on the family to pick up the pieces . . . and the "burden of care".
Some have reacted to the term "burden," but there is enough research on long-term care done by families (thus making it fairly invisible, unbillable) that this term--"burden of care"--is a REAL term in the research community. I read a fair amount of that research when I developed a nursing theory of my own, during my master's program . . .
I guess the point I'd like to make is that caring for a person with a chronic condition, having such a person in your family, is or will become a burden. It will be a financial burden. It will interrupt one's work life/career. It will truncate one's career, in many cases. This caring role will lead to family break-up, perhaps as much as 85% of the time. It is very real, and very much a threat.
Now that the Boomers are heading towards 65 (I just got a head-rush typing that!!!), there will be a slow revolution of assisted living options, improved "nursing home" care, community-based supports to live at home with chronic conditions and disabilities.
The soldiers and the ex-preemies will benefit if this revolution proceeds smoothly. Of course, we will have to agree to and develop universal healthcare for all in order for the infrastructure to be created---still more ethical questions raised there . . .
Chris and Vic
From Helen Harrison
To Chris and Vic:
In the book review from the NY Times that I quote from in the thread ("vacation") was the startling statement that 10,000 US troops have been left brain injured by their wounds in Iraq.
Helen
Why would we deny a fragile premature child life-saving medical intervention when we could help millions of people by taxing Paris Hilton or Donald Trump a little more? The money to help millions should come from the wealthy, not the weak.
Ummm, the wealthy and successful should not be punished for their success or expected to take care of everyone who is less successful. They already pay taxes, just like everybody else. This is not a communist country the last time I checked.
Kristie McNealy:
The question presented was about the distribution of resources, an inherently socialistic idea. Your comment indicates that you do not support helping people less fortunate than yourself, whether they are premature babies in need of expensive medical care or anyone else struggling in the world.
The wealthy DO NOT pay their fair share in taxes. The wealthiest Americans and private equity groups receive enormous tax breaks when their "success" is usually inherited or through the work of others. What value does a CEO create that merits a salary more than 364 times the pay of the average worker? See: http://www.boston.com/business/ticker/2007/08/two_studies_det.html.
If the wealthiest Americans pay enough in taxes (and I do not believe they do), then at the very least Congress and the executive branch should use our taxes differently. Perhaps the money should help people struggling in our country rather than pay for the Iraq war, where we kill people rather than save them.
Kristie McNealy:
The question presented was about the distribution of resources, an inherently socialistic idea. Your comment indicates that you do not support helping people less fortunate than yourself, whether they are premature babies in need of expensive medical care or anyone else struggling in the world.
The wealthy DO NOT pay their fair share in taxes. The wealthiest Americans and private equity groups receive enormous tax breaks when their "success" is usually inherited or through the work of others. What value does a CEO create that merits a salary more than 364 times the pay of the average worker? See: http://www.boston.com/business/ticker/2007/08/two_studies_det.html.
If the wealthiest Americans pay enough in taxes (and I do not believe they do), then at the very least Congress and the executive branch should use our taxes differently. Perhaps the money should help people struggling in our country rather than pay for the Iraq war, where we kill people rather than save them.
From Helen Harrison to "a":
I agree that the wealthy do not pay their fair share in our society.
But even if they did, would saving all preemies at all costs be a goal we would want to pursue in lieu of other goals with greater life-saving and life-enhancing potential?
Are we, in the long run, helping preemies, or their families, by trying to save everyone in cases where the initial care is so excruciating, complex, and costly, and the outcomes so painful and so poor?
I am listening to some truly heart-breaking accounts of older preemies (in their own words, in some cases) on other lists and in my personal email. The suffering described is largely beyond anything society can help with more money or different attitudes. The lives I'm hearing about are inherently painful and tragic.
Is saving babies -- at great suffering and cost (human and financial) -- for a life of further suffering and compromise a good use of resources?
We all have our own answers, which may change as we and our children get older.
I am personally willing to pay more taxes to support preemies who have already been "saved," but I don't want my tax money going to push the boundaries of neonatal survival even further...at least until outcomes improve and until we can do a better job with the preemie children and adults who are
already here.
Helen
Dear Helen Harrison:
I appreciate your thoughtful response.
At what point do you draw the line where the benefits of saving the babies outweigh the human and financial costs? Who should make this decision? Should we legislate a line and deny Medicaid to premature infants born below a determined gestation beyond the point of viability?
To me, as long as the infant has reached the point at which medical intervention can save her life (generally 23 weeks), the decision rests with the parents of the extremely premature child who have a Due Process right to parent and make reasonable decisions on behalf of their children. If we do not permit tax dollars to fund the healthcare of preterm infants, then only the wealthy who can afford private health insurance will have the choice to save their extremely preterm children. We live in a society that gives the wealthy too much already at the expense of the poor. So, yes, I believe tax money (Medicaid) should fund life-saving medical care for extremely preterm infants if their parents give their informed consent. I have not run the numbers, but I imagine the cost of medical care for ELBW infants is pennies in comparison to the cost of most government-funded endeavors (like the Iraq war) because the number of premature babies is small.
Furthermore, I firmly believe it is possible for the benefits of saving the lives of extremely preterm infants to outweigh the costs of their medical care. I do not deny that many ELBW children will face “outcomes so painful and so poor,” but why do we always forget about the positive outcomes? Two of my friends are former 26 weekers from the pre-surfactant age (2 lbs 1 oz and 2 lbs 4 oz at birth) and are currently graduate students. Even the studies with the most dire conclusions show us that a substantial percentage of extremely preterm infants are within the range of normal. EPICURE, for example, shows us that 51% of extremely low gestation infants are “without disability” at 30 months (EPICURE 2000), and after 6 years, 54% are “normal” or have only mild disabilities (EPICURE 2003).
Even if children grow up to face physical and mental limitations in life due to their extreme prematurity, who are we to say that these lives are not worth living? We cannot ask the preterm child whether she wants to live. We can only ask her parents, who play an important role in shaping the way that child thinks about herself and whatever challenges she may face.
In conclusion, I believe lives at the threshold of viability are worth saving as long as parents make an informed decision to save them. Informed consent should include both the negative and positive outcomes (too often neonatologists paint a picture that is either too rosy or too pessimistic). The money to save them is not nearly as much of a waste as the money we spend on preemptive war, pork projects, and tax breaks for the wealthy. That money is better spent helping others.
Helen Harrison:
I saw your reference to the data from Epicure indicating an 86% impairment rate at 11 years of age. How is impairment defined? How was the control group chosen? I do not have access to the data you mentioned.
I wear glasses. Would I be within the 86% if I were in the Epicure cohort? My point is that many impairments are only minor inconveniences in life that resolve with minor accommodations. This is my view of many learning disabilities and high functioning Autism. Even some major impairments don't necessarily reduce a person's quality of life if that person is happy and healthy.
I prefer to see the glass half full.
From Helen Harrison to "a":
I wear glasses too, and, no, that doesn't, in and of itself, qualify unless vision loss is severe.
The vast majority of the disabled children in EPICure (and the NICHD studies) are retarded or borderline retarded.
IQs for the majority are below 85 (mild impairment) or below 70 (moderate) or below 55 (severe).
This is from the data at age 6, but the age 11 data is, apparently, not much different; autism is not considered a disability, although it is related to lower IQ scores.
Helen
a said "I wear glasses. Would I be within the 86% if I were in the Epicure cohort? My point is that many impairments are only minor inconveniences in life that resolve with minor accommodations. This is my view of many learning disabilities and high functioning Autism. Even some major impairments don't necessarily reduce a person's quality of life if that person is happy and healthy."
Oh My GOD - you are considering wearing glasses to being mildly disabled? You compare high functioning autism and learning disabilities to wearing glasses? Give me a break.
One of my twins DOES have high-functiong autism and she is not expected to ever live independently, although her IQ in some areas is as high as 140. She also has mild-moderate cerebral palsy, but does walk, drive and attend college part-time and is employed part-time. She is highly volatile, extremely disorganized, and has few friends (that pesky social disorder that autism is). .
One neonatologist said that because she doesn't have blindness or other sensory issues, has a high IQ, and walks, the EPICure study would consider her mildly disabled. If anything, the EPICure study then is considering significant disabilities as MILD, not the other way around.
If you lived with my daughter for a week, you would not consider her mildly disabled - her life is chaos, she constantly needs cueing to get her needs met - take her meds, meet her appointments, clean her room, wear socially acceptable clothing and on and on and on. She thinks she is much more capable than she truly is. The neuropsych evaluation she's had twice has warned us that she could be in personal danger because she is unable to accurately read others intentions.
It is insulting and pathetic to relagate the needs of someone with autism to wearing glasses. You need to do some research into Aspergers and NLD and find out what living with someone who has right-sided brain damage is really like.
Dear Terri:
It is sad to hear that your daughter has suffered so greatly. I was not "reIegating the needs of someone with autism to wearing glasses." My point is that the term "impairment" often includes many mild disabilities that peope learn to live with (I do not have access to the study mentioned, as I stated earlier). Autism is sometimes mild. I know people with Aspergers who are married, hold jobs, and raise children. Your daughter appears to be not be so lucky. Her odds of having these types of challenges is greatly increased by her prematurity (I do not deny this basic fact), but she might have been that way even if born full term.
Terri:
I wanted to add that I have benefited from the example you gave of your daughter, showing one of the reasons I am so skeptical of the research. I agree that the definition of "impairment" likely excludes some who should be included, but it also likely includes some who do not belong. I do not believe the the tools we use (MDI, PDI, IQ, etc) can accurately assess quality of life.
A.
Wow! I am new to this blog as of yesterday, and had the opportunity to read through the previous posts only a few minutes ago. I am shocked by hostility here. The lives and outcomes of premature infants is an inherently emotional subject further complicated by lack of NICU follow-up and blind acceptance of methodologically suspect research (inherently small sample population, faulty controls, incomplete collection of perinatal factors, etc). What is the point of having a discussion if we don't even care about what anyone else thinks? I have learned a lot from you in my short time here, but this is the last time I will visit here. I have better things to do than dodge mud, like raising my wonderful children. Sheesh!
A.
A said: "Your daughter appears to be not be so lucky. Her odds of having these types of challenges is greatly increased by her prematurity (I do not deny this basic fact), but she might have been that way even if born full term."
She most likely would not have had high functioning autism if she had been born fullterm, as her twin is not autistic - profoundly mentally retarded due to her grade IV IVH, cerebral palsy, seizures and blindness - but autism, she dodged that bullet. Whew - wouldn't have known what to do if she were autistic too! (ok, an attempt at dark humor). .
The tone of your posts seem to want to negate the difficulty of children who are "mild". .And, being that you talked of wearing glasses in the same paragraph of making the connection to your stance on high-functioning autism and learning disabilities, of course anyone would make the leap that you equate wearing glasses to high functioning autism and learning disabilities. Learning disabilities and certain types of autism carry very high rates of suicide, so as far as your happiness theory. .
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