posted
Well apparently simply the number of abortions provided in each segment of time (like, lets say, 4 week segments) would be enough. Because as soon as you see a high number of abortions, you can apply for research.
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HIPAA is very, very weird, very murky. You cannot analyze data which are traceable to an individual person ("identifiable") unless you already have a professional reason to have access to that data. Additionally, even data one does have access to for legitimate work reasons cannot always be analyzed for other work reasons (so, for example, the same physician may have a database he can use to assess some outcomes, but not others).
The number of clinical research applications which would have automatically been approved at UWisconsin has dropped by 75%, according to the IRB. That's sorta scary. Mind you, I'm for HIPAA, and it still scares me.
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Suneun, I am confused by the details of HIPAA myself, and I'm still working out the basics of how it applies to research. I will try to piece together something useful in another thread.
I was, however, astonished at the restrictiveness placed on research amongst my colleagues in residency. Our IRB chair gave an eye-opening presentation on the Byzantine nature of the rules.
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CT: I had the unfortunate luck to deal with HIPAA last summer. I pased the ethics quiz, wrote up the forms, and got approval from the myriad folks who needed to okay the study. It took, well, ages...
Anyhow. I think that broadly defined statistics like # of abortions performed for each trimester or each segment of time would be sufficient to show "abormally large number of abortions." And in the original case that spawned this thread, I don't know how much Ashcroft will concern himself with the privacy rights of the patients. Maybe a lot, maybe none at all. But my test is whether their procedure would pass HIPAA. Because the government cannot be above its' own laws.
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We had people on the review committee for HIPAA who weren't aware of some of the ramifications, much less the researchers. I'd love to hear about your experiences -- what was your research about?
On the other hand, there is precedent for breeching patient privacy. As far as I know, the Public Health Department still tracks reportable diseases. (How does HIPAA affect, say, syphilis tracking, or TB? I don't know.) Could the scaffolding of the current system be used to track third-trimester abortions? Would there be similar grounds on the basis of public interest/safety?
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Why is almost everyone in this thread ignoring that a) turning over the records does not violate HIPAA, and b) seeking the records is well within the bounds of normal discovery?
If you want to argue the desirability of the statute at issue here, that's one thing. But trying to put a sinister spin on the Justice Department using normal, acceptable discovery mechanisms in the course of carrying out its job in defending a federal law is a little beyond the pale.
This is a case of certain individuals challenging the constitutionality of a given law, seeking to introduce expert testimony in support of their challenge. The executive branch, fulfilling its duty in defending the law, is seeking access to the data underlying the expert testimony.
That's all that's going on here.
Dagonee
P.S., In other words, the statement that sparked my interest in the thread ("If this is not a clear case of a government run amok, justifying the means with its ends, I don't know what is.") has been refuted and no one has either admitted this or explained why the refutation is invalid.
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Dagonee, I'd just want the privacy of the individuals in question protected. The only way I know how to do this is through HIPAA. This generally entails removing all personally identifying information, and usually aggregating the data so the individuals cannot be identified. If Ashcroft is insisting on the privacy of every individual, then so be it.
But IANAL, and I don't know anything more about this case beyond a few news articles. -------- CT: I had a rather feeble research project, to tell the truth. The hypothesis is that children diagnosed with Rolandic Epilepsy would not show any greater frequency of learning disabilities than the average population. We scanned the EEG reports for diagnoses of rolandic epilepsy at the pediatric neurology department at a local hospital. Then I retrieved records for the patients in question. I analyzed the charts for any reports on learning disabilities and recorded data on Apgar scores, EEG findings, other illnesses, etc.
Unfortunately, there weren't enough patients diagnosed with rolandic epilepsy, and many patients had only come in for an ER visit so we didn't have their family doc records. Also, the hospital recently moved their records to an off-site microfiche center owned by a 3rd party. I spent a month trying to get permission to request those files and get an official fund request from the office. Secretaries and Department Chiefs kept going on vacation.
With HIPAA itself, I just had to do the silly ethics quiz, fill out half a dozen forms describing the research project in detail, and get various people to vouch for me. The main annoyance was that when I finally got approval, they apparently didn't notify anyone. So I only found out two weeks later when I called up to check ("Oh, we already approved your study. Did you not get the paperwork?").
Mind you, the HIPAA stuff was a little silly, since technically I'm already allowed to work with patient data under the Education section of HIPAA. But they were very careful because a wrong move can get you fined for something like $100,000 per incident.
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quote:turning over the records does not violate HIPAA
I'm not sure this is so clear, Dagonee. How would you word the subpoena to get what you think is necessary? What party would file the subpoena, and for exactly what information?
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quote:Mind you, the HIPAA stuff was a little silly, since technically I'm already allowed to work with patient data under the Education section of HIPAA.
But you couldn't publish based on the data you accessed for educational reasons, right?
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Yeah, I had to present a summary of findings to the organization who gave me the grant. So because of that, I had to file under HIPAA.
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CT, I'm assuming you've read my previous posts in this thread, so I won't repeat those portions.
quote:How would you word the subpoena to get what you think is necessary?
Wording? Hmm, haven't drafted subpoenas before. Something like "the medical records for each patient history upon which the expert bases his opinion that the subject procedure is medically necessary, with specific non-medical identifying information removed."
quote:What party would file the subpoena, and for exactly what information?
In this case, the Defendant would file the subpoena, in order to obtain the information upon which the Plaintiff's expert opinion is based. This allows the Defense to have its own experts challenge the Plaintiff's experts' conclusions.
As for the information, I would want the details of any information used by the expert in arriving at his opinion, which would probably include the medical history that led to the decision to perform the procedure.
Let me re-emphasize - HIPAA is meant to regulate how medical care providers and other "covered entities" protect the privacy of patient information. It made no changes to the rules of evidence related to medical information. And it specifically authorizes release of information in response to subpoenas if certain procedural protections are followed.
posted
Let me clarify: if a subpoena is upheld by the court (survives a motion to quash), it is categorically not a violation of HIPAA to turn the information over - this is explicit in the text of the regulations I linked earlier.
My understanding, which is less concrete but based on a decent understanding of HIPAA, is that nothing in HIPAA changes the analysis used by a court in deciding whether or not to quash a subpoena. There might be case law or other statutes that would assist the plaintiffs in quashing.
This is what I meant when I said nothing in HIPAA prevents responding to the subpoenas.
1) Other hospitals have successfully fought Justice Department subpoenas of medical records in third trimester abortion cases already. The basis of the objections has been patient confidentiality and the courts agreed that even though the records are "cleansed" there is still a violation of privacy. So the government didn't get the records in the prior cases. This time it's a different court, but the privacy issue is still the basis for the objection to the subpoena.
2) Just wanted everyone to know that the State of Texas has just opted out of HIPAA. According to our state's attorney, HIPAA no longer applies in TX. I'm not joking. The state's laws have been ruled to supercede HIPAA.
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quote:Bob, would you agree that we should perhaps require post-operation review of all third-trimester abortions, to conclude that they were in fact medically necessary? In all other cases resulting in the death of a patient, this kind of review would be routine.
According to the original Roe v Wade decision, as I read it, the decision is up to the patient's doctor. States were given the right to restrict access to the procedure unless it was needed to preserve the woman's life. If a state passes a law, and a doctor is operating outside the law, then there are other ways to get them besides requiring a review of every such case.
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Dagonee, I think there are more barriers to getting the initial subpoena to go through than may be apparent. That is, perhaps people are not so much "ignoring that turning over the records does not violate HIPAA [if a subpoena is upheld by the court (survives a motion to quash)]" as arguing that the subpoena should not survive the motion to quash.
If the subpoena is seeking information regarded as Protected Health Information (PHI) under HIPAA, then one of the following (I think) must be in effect for you to be protected in responding as requested to the subpoena:
1. the person whose records are being subpoenaed provides a written authorization permitting disclosure of the records; or
2. you receive "satisfactory assurance" [there is further qualification for this term] from the requester that the person of record has been notified of the subpoena and has not objected; or
3. you are aware that the court has entered an appropriate protective order regarding the PHI; or
4. that subpoena is accompanied by a court order requiring you to produce tha person's records.
Just the subpoena isn't enough. Ashcroft seems to be just pursuing the subpoena, which implies a disregard for the rest of the requirement (as if it didn't apply in this case).
Or am I missing something? Was, e.g., a court order sought before the subpoena was filed?
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None of the rest can occur without the subpoena. So he's not ignoring those requirements, he's embarked on the first stage of the process that will satisfy those requirements.
posted
In other words, he doesn't get a court order to issue the subpoena. He issues the subpoena. The entity in control of the record holder must perform the required notifications. If there are no objections, then the subpoena must be honored. If there are, then the court will issue an order either upholding or quashing the subpoena.
In other words, the subpoena is the request. The court order is the demand. The first is issued by parties in civil cases. The second is issued by the judge.
posted
One comment about poor Mr. Ashcroft who is only doing his duty to prosecute a law that Congress passed and the President signed....
does anyone else remember Mr. Ashcroft using the money we pay him to protect us to campaigning across the country to pass Patriot II? His support of Patriot, and constant protection of itis why he, and not Congress, which has sought several times already to cut part of it only to have Mr. Ashcroft fight to keep it hole, is why we link Mr. Ashcroft with Patriot Act.
posted
But Bob is correct in stating that "If [the physicians] reviewed the individual women's charts & medical history and used that to make a decision ....then I guess it would be discoverable. And, if those doctors turn that stuff over, they'll be in violation of HIPAA and they'd be in trouble for releasing personal health information," at least insofar as the physicians only have a subpoena of PHI to work with. Right?
So one would be in trouble for releasing PHI to a subpoena alone, although not in trouble for rejecting it [because it is] insufficient to compel release of information. (Is this correct?)
But on the other hand, you would claim that a subpoena, after being rejected because it is insufficient, might then be resent accompanied by a later-filed court order [or other meeting of the requisite criteria], and if so, releasing PHI to this buttressed (?) subpoena would not place one in jeopardy of HIPAA as a HCP. Still correct?
posted
If I understand your scenario correctly, then yes. A subpoena alone does not cover it. But a subpoena accompanied by an order of a court or administrative tribunal; proof of notice to the patient along with proof that the time for the patient to object has elapsed; or proof that the party requesting the information has received a qualified protective order from the court to which all parties of the dispute have agreed.
So a court order is not required, but some assurance that the patient's privacy rights have been accounted for is. Again, none of this speaks to the substantive question as to whether the discovering party is entitled to receive the information requested. HIPAA establishes procedural due process requirements designed to ensure the substantive due process requirements are adequately dealt with.
Check out 164.512(e) in the link I provided in my earlier post on the subject for more details on what's actually required.
So if Ashcroft fails (additionally) to meet one of the requisite four criteria, then the physicians so subpoenaed have a legal obligation not to disclose the PHI, as per HIPAA. Right?
[This is why I was thinking that HIPAA regulations still are important to the discussion; namely, this is why people have still been discussing the burden of HIPAA on the physicians' actions. That, I think, is the answer to your question at the top of the page.
Until requisite conditions have been met, the physicians are still constrained by HIPAA not to release information.]
posted
"If a state passes a law, and a doctor is operating outside the law, then there are other ways to get them besides requiring a review of every such case."
Which ways would these be? If a doctor is deciding to permit third-trimester abortions on a whim, how would you determine that without reviewing his record?
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quote:So if Ashcroft fails (additionally) to meet one of the requisite four criteria...
This may just be me being too picky over language, but not quite. It's the soon-to-be-lawyer in me.
Ashcroft must meet one of these procedural safeguards before he the covered entity can legally release the data. Each of them provides an opportunity to have a judge rule on whether the government is entitled to the information, although this will not always happen if the subpoena is not contested in a timely fashion. In this sense, HIPAA must be accounted for before the government will get the records. This is referred to as procedural due process, and its goal is to ensure that an interested party will have a chance to be heard before her rights are irreperably infringed.
"Criteria" to me implies an idea of whether or not the government, as defendants in the suit, are entitled to the information. The only person who will make that decision is the judge, and HIPAA will not enter into his decision at all. Something like the four standards I listed on the previous page will be used. This is part of substantive due process, and its goal is that the right decision is reached once the question is heard.
So yes, HIPAA must be accounted for before turning over the records because one of its purposes is to ensure procedural due process, but no, HIPAA has no bearing on if the government is entitled to eventually see the records.
Dagonee PS, I've over-simplified the types of due process, but the categorization is accurate.
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Tom: My guess is only through a personal lawsuit.
While I don't know for a fact, I doubt the government reviews every single medical procedure to make sure they're not done on a whim. Or even re-assess the risk:benefit ratio for every procedure, which would logically be useful but is practically-speaking impossible.
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In the case of third-trimester abortion, which is essentially murder, shouldn't an exception be made? Surely a routine review is made every time someone is euthanized or dies on an operating table, right?
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As the logic behind permitting third-trimester abortion only in medically-necessary cases is that it arguably ends a life, surely this is equivalent to, say, choosing to pull the plug on a brain-dead patient who is only arguably "living." And yet I guarantee you that there are medical reviews done of such decisions.
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posted
I don't consider them equivalent either, since a brain-dead patient taken off a respirator has more than likely had some chance to make their preferences in such a situation known, even if such chance existed only before the injury leading to brain death.
posted
Aside from the specifics of the abortion issue that has been cited (which I don't know enough about to comment on), I have to say that I tend to agree with Bob in general here.
I, too, am old enough to remember the Nixon administration and Watergate. (And I'm almost old enough to remember McCarthyism.) I see too many similarities between the Nixon administration's shenannigans and some of the stuff going on in Bush II's administration.
They are way too fond of secrecy.
They are way too quick to label enemies.
They are way too fond of impinging on civil liberties.
In addition, the people surrounding Bush are way too convinced that Bush's election was a mandate to impose their own personal beliefs on the whole country. Considering how close the election was, I think they are out of line to consider it a mandate on anything.
Honestly, John Ashcroft (among others in the administration), scares the crap out of me.
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quote:As the logic behind permitting third-trimester abortion only in medically-necessary cases is that it arguably ends a life, surely this is equivalent to, say, choosing to pull the plug on a brain-dead patient who is only arguably "living." And yet I guarantee you that there are medical reviews done of such decisions.
Tom, I'm curious. What is the belief that "pulling the plug" decisions are reviewed based on? By whom? To what end? These situations occur in far more than just those labeled "brain dead" and I'm really at a loss as to what kind of medical reviews you could be referring to.
I've been reading through this thread and there seems to be a blurring of the lines between "partial birth abortion" and "third-trimester abortion." Congress outlawed the former, which refers to a specific procedure. It does not specifically outlaw late-term abortions carried out by other means.
Politics is always a dirty game - on both sides. Public opinion is pretty strongly in favor of outlawing the procedure labeled "partial birth." I suspect that part of the strategy in bringing the legal challenge was to force Ashcroft to subpoena records as a way of refocusing some public opinion - since public support for Ashcroft isn't as strong as the support for the legislation.
Just for the record - I'm not an Ashcroft fan. Not sure what to think about this particular case, but I am less sympathetic than most to claims that medicine should be left alone to police itself - self-policing hasn't worked real well with controlling the high rate of medical errors that plague our health system right now.
quote:Which ways would these be? If a doctor is deciding to permit third-trimester abortions on a whim, how would you determine that without reviewing his record?
Suneun said most of what I wanted to reply here, and you have had a further discussion that expanded the issue. I just wanted to say that:
1) I would be in favor of reviewing a doctor's records as part of a medical review board (AMA, his hospital) for possible disciplinary procedures, loss of license or hospital privileges.
That's not the same as reviewing every 3rd trimester abortion. I'm not in favor of that because it would violate the intent of the Supreme Court decision to leave the medical decision in the hands of the medical practitioner.
2. I see the obvious possible loop-hole. A compliant doctor becomes "known" around town as someone who will perform a third trimester abortion and swear that it was a medical necessity. Frankly, I don't find this very likely because: a) The procedures aren't performed solo, so there are other "accomplices" to worry about if he's breaking the law. Someone will rat the doctor out eventually. b) If a doctor becomes known around town for being compliant, his peers will know about it. Eventually, he'll be scrutinized. c) If he somehow manages to keep the whole thing secret, he's not doing very many and so will be below the radar.
Anyway, I just think it's not a very likely scenario and thus any effort expended on MAKING SURE is really bordering on harrassment of the MD and the patient. It would have a chilling effect on proper medical treatment if the patient and the doctor know that the patient's medical file will be turned over to a review board. Will doctors become more and more reluctant to act swiftly to save a woman's life because they fear that a vague law and sentiment may spell the end of their career?
I don't like that alternative.
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posted
Bob, I think you miss another obvious loophole: what if not just a single doctor but an entire clinic is determined to perform these abortions on flimsy pretenses?
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I'm glad you brought that point up, Tom. There is at least one facility I know of that specializes in late-term abortions. Interestingly, the website doesn't use "health of the mother" as a rationale for what they do. It's all about "fetal anomalies."
The same site, in its description of procedures, refers to the abortion as a "delivery." Posts: 4344 | Registered: Mar 2003
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posted
I went looking for some statistics on "late term" abortion and couldn't really find a link, but I found a reference to a link...Not very encouraging.
But basically, they said that 90% of abortions take place in the first trimester and 10% in the second trimester, with a very small number (less than 1% obviously if the above are true) taking place in the third trimester. Something under 1000 per year. (300-700 range was cited)
Having known at least one woman who had to go full term with a stillborn baby, I wonder what percentage of the 700 babies aborted in the third trimester were already dead in the womb and counted. It sounded from the stats that some were.
Tom, I know you'll say "well if it's such a small number, let's review every case." But I still have a different take on it. There aren't that many because they are done in rare circumstances and for legitimate reasons.
sndrake, I believe found the site you were referring to (place in Kansas?). I think I understand your point, but without knowing what fetal anomalies they are referring to (up to and including actual dead fetuses), I'm not sure what to make of it.
Suffice it to say that I still don't think this is a job for government and that if state laws are being violated, I would expect a place that advertises on the Internet would be under a fair amount of scrutiny. If they're aborting viable fetuses after 24 weeks gestation without a compelling medical reason, what is stopping the AMA or the state from going after them?
It seems to me that the burden of proof is on the people who want to violate women's privacy to first show a compelling need for the state to do so.
Worrying about a potential scenario isn't going to cut it, I don't think. At least not with the Supreme Court.
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quote:sndrake, I believe found the site you were referring to (place in Kansas?). I think I understand your point, but without knowing what fetal anomalies they are referring to (up to and including actual dead fetuses), I'm not sure what to make of it.
Bob, it's been awhile since I've visited the site (yeah - you found the right one.). It used to have a breakdown of conditions, listing down syndrome, neural tube defect (spina bifida), and other conditions. That's gone. The point I was making - it's a side one in this thread - is the disturbing way (to me, anyway) the elimination of a late-stage fetus is packaged and presented as a "birth experience."
I don't think the site leaves any doubt about whether they're delivering "stillborns" or causing them:
quote:On the first day of the process, an injection of a medication is made into the baby to assure that it will be stillborn and will not experience any discomfort during the procedure.
That kind makes it clear, doesn't it? (If you really want to see some nauseating stuff, go to the grief sites. All ambiguity will be erased. I have one real horrid recollection of a poem written by someone "in the voice of" her aborted child who had Down syndrome thanking her for doing it.)
(insert vomit graemlin here)
You continue:
quote:Suffice it to say that I still don't think this is a job for government and that if state laws are being violated, I would expect a place that advertises on the Internet would be under a fair amount of scrutiny. If they're aborting viable fetuses after 24 weeks gestation without a compelling medical reason, what is stopping the AMA or the state from going after them?
Bob, what makes you think that any medical facility is under any intense scrutiny by anybody? The AMA doesn't go after anyone - as a matter of fact, that group does its best to oppose any outside oversight of the profession.
Remember the Singer thread and the story about the Baby Jane Doe in New Jersey? How a guardian ad litem determined there were descrepancies between the medical records and the sworn testimony of a physician? And when C. Everett Koop asked to review the records, he was attacked as a right-wing fanatic - when in fact the hospital may have had less than admirable reasons for keeping the records private.
We're on the same page in how we think about Ashcroft. I think you see some of the other players as having either nobler motives or having more power than they actually do.
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sndrake, I really don't have any real working knowledge of the medical profession's ability to self-regulate. It just doesn't make much sense to me that a person or group can get away with breaking the law repeatedly in the manner proposed by Tom. I could be wrong, but it just doesn't pass the smell test for me.
Anyway, as I have nothing to go on but a gut feeling as opposed to actual facts, I'll defer to those with more information.
As for the injection to "ensure stillbirth," I read that and wondered if they do that whether or not the believe the fetus to already be dead. The use of the word "ensure" allows a broad connotation here. It might mean "make absolutely certain" or it might mean "we kill the fetus."
I will agree, though, that the website is not very plain and open its descriptions. And I also agree that it seems to indicate that 3rd trimester abortion due to problems with the fetus, and NOT the health of the mother is what they are doing.
I'm not sure of the laws in Kansas though. Since this was a state-by-state decision until recently, it'd be important to know whether Kansas has a law restricting late term abortion to ONLY cases in which the mother's health is in danger.
I had a cousin who, because of the state she lived in, was forced to go full term with a pregnancy in which the fetus was stillborn in the womb. While it didn't affect her physical health to do that, it sure was traumatic to go those last couple of months carrying a dead child inside. I don't know all the particulars of her situation, of course. Maybe it was safer for her to carry the fetus until her body rejected it (or whatever) naturally. But I know that if the extraction procedure is safe, I'd want the option available to women who chose NOT to carry a dead fetus.
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but, yes -- Kansas is one of the focal points of the argument. Here in Wichita we have an abortion clinic run by Dr. George Tiller that performs late-term abortions.
It is a site of constant picketing and national media attention -- pro-life groups from all over the country come to Wichita just to protest Dr. George Tiller.
Not exactly something a city wants to be famous for.
As to Kansas law -- I quit following this issue -- but there has been several pieces of legislation proposed outlawing late-term abortion -- I don't know the current standing. It just seems to be an ongoing war that has gone on for several years now.
Wichita was a main site of one of Pro-Life "summer of mercy" campaigns.
quote:sndrake, I really don't have any real working knowledge of the medical profession's ability to self-regulate. It just doesn't make much sense to me that a person or group can get away with breaking the law repeatedly in the manner proposed by Tom. I could be wrong, but it just doesn't pass the smell test for me.
Bob, medical professionals breaking the law and getting away with it makes perfect sense to me. Let me give you an example: Last year, I presided over a retreat at the national conference of the American Association on Mental Retardation (I'm aware of the irony of me getting to talk to a bunch of clergy all day.).
One of the ministers works at an institution in your own state. He told the group there was a doctor at the local hospital that they kept their clients away from at all costs if they were hospitalized. He'd put "do not resuscitate" orders in their charts, refuse to order certain tests, etc.
It's highly unlikely that this physician's attitudes and resulting practices are a secret to the hospital staff. Doesn't mean that everyone agrees with what he does - but they tolerate it and respect his "right" as a professional to exercise "clinical judgment," even when it is motivated by contempt.
Due process considerations are not something hospitals or health care provider organizations want to spend much time on - they entail nonbillable hours.
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Farmgirl -- it's Tiller's website that sndrake and I are discussing. He appears unique in his advertising of this service on the web. At least Google didn't find any others like his clinic.
sndrake -- So, as Tom suggested, do you think a post-abortion review for all 3rd trimester abortions is the answer?
I suppose with so few places performing 3rd trimester abortions, another possibility would be for the government to request an annual medical review to be sure no laws were broken.
But it seems kind of like a fishing expedition. Shouldn't there be probable cause?
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the biggest objection I have to Tiller is the way in which abortion is portrayed as a "delivery" experience. I've already sounded off on my total lack of sympathy for those who want to justify an abortion as an act of compassion (saving the child from the horror of life with a disability) rather than sticking to the legal basis - which is about privacy and autonomy.
The only reason I jumped in at all was there seemed to be some assumptions about "watchdog" funcitions in the medical system that just don't exist. For example, the AMA is a professional organization that represents about half of the physicians in the US - not all physicians even belong to the organization.
The other thing was about the bill in question (which I think the current case revolves around). "Partial birth abortion" refers to a specific procedure. If there's any checking going on, it will be to find out if having to use that specific procedure was medically necessary.
Someone may have better access than I do, but it's my understanding that the "health of the mother" language in the court case that defined the exception in late-term pregnancy is very broad. Includes emotional and psychological health of the mother - as I've mentioned before, physicians are probably more sympathetic than the general public to signing off on the idea that parents will be "harmed" by the birth of a child with a disability. In any case, unless the physicians have been unbelievably sloppy, it's unlikely they can't meet a definition of "danger to the health" of the mother.
Don't have specific recommendations - I occasionally find it hard to resist pointing out that it's a highly political issue with a lot of crap being flung on BOTH sides.
I'm shocked by the experience you related - about a dead fetus being carried to term. But I am curious - if it was "dead," how did the pregnancy itself progress? Didn't growth and development stop?
posted
Yes, and I'm a little hazy on the details, but apparently she was told that it was safer to carry it full term and the body would just go through a delivery at the end of the process.
I don't get it. I didn't understand it then.
This was in NY State over 10 years ago, so I doubt the doctor was just making her suffer through a stillbirth because of a flawed abortion restriction. I mean, I have to at least believe that he would be looking out for the health of the mother 100% at the point when the fetus is discovered to have died.
It was a horrible experience for her, but whether anything could've been done differently, I can't say.
I am a bit concerned by the medical attitudes you have mentioned about fetal anomalies and disability in general. I'd be wary of anyone who decided they knew what anyone else's quality of life was, let alone whether it was acceptable to them. I mean, if it's the only life you have, maybe it's good enough for you?
On the other hand, I can pretty well understand the devastation that a parent might feel upon hearing that their child might be severely disabled. I'm not sure I could handle it, but it's another one of those situations where most of us wouldn't know until/unless we have to face it.
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Bob, the discrepancy between physicians' estimation of patients' quality of life and that of the patients with disabilities themselves is well-documented. More recently, the discrepancy between the patients' assessments of their own QOL and that of the general public (Whose quality of life? A commentary exploring discrepancies ...) has been documented. Most eye-opening for me was the marked discrepancy even between parents' (of children with brain tumors) and their children's assessments of the children's QOL (Health-related quality of life in childhood cancer: discrepancy in parent-child reports.).
Why is this important? Because it is the unquestioned and unexamined assumptions we have about those who are disabled which drive the options we even consider at the public table. Not even the loving parents of children adequately understand the experience enough to completely speak for them.
So, in the case of persons who are able to speak for themselves, why don't we ask them? And why don't we listen?
Sometimes it seems the bias is strong enough to lead some to say, in effect, "No, you are wrong -- your life is really much worse than you believe it is." Couple this with a power structure like medicine, where self-regulation is entrenced by language and access to information as much as by custom, and you have a doozy of a mess.
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