Late Term Abortion, Severe Fetal Abnormalities, Futile Care, and Insurance

[HockeyMom]

I used to work at a Non-Profit Agency for the Developmentally Disabled. A coworker was told late in her pregnancy that her baby would be born with severe birth defects and would not live. They advised her to have an abortion which she refused. Ok, her choice, but her decision had far reaching consequences.

After 6 months, she changed doctors and the hospital when they refused to treat him anymore. Futile care? He was in the second hospital for another year and half, receiving round the clock care, surgeries, etc. The cost to keep him alive for 2 years cost in the millions of dollars. When do you say enough is enough? Everyone, including the head of the agency who was a former Nun, told this woman to let him go. It was hopeless. She refused. Despite all the extraordinary care he was getting, he did die anyway. What kind of life did that little boy have for those short 2 years? WHO was he being kept alive for? Him, or his mother?

Far reaching consequences? We were told by the head of the agency that our group insurance dropped our policy because of this one child. Hundreds of people who worked there lost their insurance. It took months for the agency to find other health insurance because they apparently knew of this one case, and they wanted to charge us sky high rates.

Is this the wave of the future if anti-choice people have their way?

[LuvNewcastle]

1. Stories like this really test my belief in choice. I want to say that

someone should have making the choices she did. I think she had mental issues. What she did was extraordinarily inhumane and wasteful of resources. The insurance company should have been informed of her decision to keep the baby and should have told her they would drop her coverage after the child was born.

I know, do we really want insurance companies to have the power to do that after they decide that expenditures will be too great? Most of the time, I would say no, but extreme cases like this make me think there should be exceptions. She didn't just fuck up her own coverage, but ruined everyone else's in the group. Maybe a government agency (death panel? I know) should have stepped in and gotten her the mental help she needed and made a decision about the continued treatment of that child. Maybe someone should have stepped in before she even carried the baby to term, I don't know. These are tough questions, but with all the advances of science and their limits, these questions need answers.

[Th1onein]

50. slippery slope

My sister was a victim of texas' Futile Care law. Not good. These laws are murderous and they benefit INSURANCE COMPANIES, not patients.

Believe me, you do NOT want to go there.

[Dorian Gray]

2. He was her baby

I can understand why she went to extremes to try to give him life.

[newcriminal]

3. Are you suggesting she should have been forced to have an abortion?

[HockeyMom]

11. Forced, no

but she totally dismissed everything her doctors said to her, before birth and after. She could not face reality, or death. If you choose life, you cannot escape death, somewhere along the line. I don't want to get into a religious discussion.

[duffyduff]

12. It's not your business. Your point of view is extremely offensive to me. n/t

[HappyMe]

16. Frankly, who the hell are you to decide

she's wrong and complain about her decision. It's not any of your business.

I find your lack of empathy for this woman incredibly cold.

[newcriminal]

19. So it's ok for you to judge her for not having an abortion,

but anyone who judges a woman who has an abortion is wrong?

You can't have it both ways.

[HockeyMom]

30. Her choice hurt a lot of other people

Her choice to KEEP USING extraordinary means to keep it alive when it was hopeless. Abortion? No, it goes way beyond the issue of having one or not. Have it, but there comes a time when you must say this child is not going to live. That is it.

[newcriminal]

32. "Is this the wave of the future if anti-choice people have their way? "

You made this about abortion, and now that you're getting flack about it your trying to make it into something else.

[kcr]

46. No, the insurance company's choice to drop them hurt a lot of people

[HappyMe]

48. The insurance company is to blame. Not her.

[Myrina]

4. People think they are doing the "right" thing ...

.... there's no way to make them rationalize or believe anything else.

I know this is a lame comparison but I've met many 'dog parents' who spend thousands upon thousands for surgery, rehab, even Chemotherapy for their dogs. I love my dogs more than I love myself but I'm sure as hell not going to spend my life savings on Chemo for my dog.

Some pet parents have dogs with a condition called Degenerative Myelopathy. Lou Gehrig's Disease for dogs, essentially.
And as the dog's health declines, they will get them laser & hydro therapy, a 'wheelchair', help them pee & poop and eventually have to help them eat. I wouldn't want to live like that and I'm sure if dogs could talk they would say they don't want to either.

But you can't make someone change what they think is "right" or "appropriate" care.

[ananda]

5. Choice is choice. It's your body, it's your choice.

This is about slavery.

[HappyMe]

6. This is a hard issue to discuss.

Who's to say if this woman was right or wrong. I certainly don't know what I would do if I were placed in her situation. She made her decision/choice and that is her right. You can disagree with her decision, but in the end it is still her choice.

Just as nobody should be forced to have a baby, nobody should be forced to abort.

[surrealAmerican]

7. I don't think abortion is the issue in this case.

It's more about quality of life for a fatally ill infant. Putting a dying child through multiple surgeries to prolong his life is just plain cruel. It's understandable that a parent would do anything to "save" their child (living in a constant state of crisis can lead to poor decision making), but the doctors and hospital staff who decided to preform these interventions were behaving in a very unethical way.

[HockeyMom]

8. That was also my point

As I said, her first doctor and hospital refused to treat after 6 months. They wanted to just give him minimal care and not do anymore extraordinary surgeries or treatments. She wanted everything possible to keep being done, including many considered experimental. That is why she changed hospitals. I will not mention what kind of hospital agreed to do all these procedures. Read between the lines.

Employees had their insurance dropped. Many had their own kids. Some gave birth themselves in the meantime. What about their kids who could benefit from medical treatment? My own daughter was in college then and so I didn't worry too much about her, but some employees had little kids. So their kids had to suffer because of one person? They scrambled to get on CHIPS for their own kids.

I am sorry, but we are seeing a lot of this ME, ME, ME in society today. Even right here on DU. Single payer is the way to go, but given the me attitude, it is not going to happen.

[duffyduff]

10. That's NOT your decision to make. It smacks of eugenics. n/t

[surrealAmerican]

13. Of course it's not my decision.

The trained medical professionals need to make this decision with the parents, based not on how much money they can get for preforming the procedures, but on how it impacts the patient's quality of life.

Doctors take an oath to "first, do no harm". This sort of situation looks a lot like harm.

[LuvNewcastle]

28. I agree.

There are some doctors and hospitals that will suck Medicare and insurance companies dry providing 'care' that goes far beyond what is rational and humane. It seems nobody was thinking about that baby and what he was going through. Only after they had done everything the insurance company would allow to be done did the doctors refuse further treatment. I'm on Medicare, and I can tell you that I've had some doctors treat me that would really go overboard with some treatments if I didn't put the brakes on it. For too many health professionals nowadays, it's a business first and foremost.

[CountAllVotes]

52. +1

[duffyduff]

9. Who's to determine "quality of life"?

Be real careful when you get into disability issues to try to argue for legal abortion. It rubs me and millions of other people the wrong way.

Peddling eugenics is truly offensive and does not belong on this board.

[HappyMe]

14. Yup. Who gets to decide

quality of life and who gets treatment and who doesn't. Or who gets to be born and who doesn't.

I don't want some 'board' or something deciding anything about my sons or husband when it comes to medical issues.

[Boudica the Lyoness]

20. That's what insurance companies do now.

I was turned down by my insurance co. for an total ankle replacement and I suffered a great deal of pain overturning that decision. Also my insurance co. refused to cover infusion treatments for me.

We pay $1800/month and it's Blue Cross.

People don't understand 'Death Panels' until you become very ill, then you find out the death panels are the very same people you give $1800 to every month.

[HappyMe]

21. With the ACA that isn't supposed to happen any more.

I did not bother to even look for health insurance before because I had cancer a few years ago. I figured I would either get turned down or it would be too expensive.

I hope you are recovering now.

[Boudica the Lyoness]

22. We are going to save a lot of $ with ACA

I hope you are recovering as well.

[HappyMe]

26. I'm fine. It's going to take a

little bit more than that to get rid of me.

This ACA seems to be helping more people money wise and as far as care goes also.

[HockeyMom]

23. "Do not let them keep me alive as a vegetable

as a science experiment just so they can see how long I can be kept alive". My Mom put that in her Living Will. She went to see an Attorney before she went into the hospital. She sat me down before, and made me promise I would honor her wishes before she made me her Health Proxy with POA. Mom was vehement about her wishes. I honored them because that was what she wanted. Some in the hospital were not happy about that, but they had their hands tied. I was prepared to fight anyone who tried to go against what Mom wanted.

Would this too be considered Eugenics? Would this too be a "disability"? We were talking on this OT about the beginning of life, but it also applies to the end of life. Yes, I suppose this topic is really more about quality of life, than abortion per se. No, a baby or child cannot make this decision, but adults most certainly can, and do.

Can an adult refuse medical treatment if that treatment will make them a vegetable, in Mom's words? I say this to those in other posts citing Eugenics and Disabilities. If my Mom didn't want to live out the rest of her short life (she was 75) on tubes and machines (disabled?), should somebody tell her she must? Waste all that money for hospital treatment that she didn't want? The health insurance money pool could be used for somebody younger and/or who wanted treatment.

Step further. Health Insurance. While we can be forced (tax re SC), can we be forced to use it? I get blasted right here on DU for saying I will not use or want medical care. And I haven't done so in the past. That may not be the choice of the majority of people in this country, but it is my choice and I want that honored if people cannot respect it. If nothing else, that choice will not cost others a whole lot of money.

I never thought this thread would take so many different turns.

[HappyMe]

25. I don't think there is anything wrong in someone

leaving a directive for the end of their life. People should respect those wishes.

I am not the person that mentioned eugenics or disability.

I respect your decision to not have any medical care. But what I don't respect is you blasting somebody's decision to avail themselves of any and all treatments that they want for themselves or a loved one. I am sitting here today because of a year's worth of chemo that was not cheap by any means. I think I'm worth every damn penny of it, and so do my sons and husband.

[HockeyMom]

17. Disability?

No, this child didn't just have a disability. It was dying and there was nothing which could be done by medical science to keep it alive. Have you heard the term "incompatable with life"? I cannot list everything that was wrong with it but that was term she told me her doctor used before birth.

Sorry, no, we are not talking about just "disabilities" here.

[FarCenter]

15. This is why Congress will never do single payer

They need the insurance companies to ration health care.

[rug]

18. It's the parents' decision.

For-profit health care should not take away their choice.

[HockeyMom]

24. What happens when insurance refuses to pay further?

She made $11/hour and certainly didn't have the money to pay herself. Should the rest of the employees and their families be dropped from coverage because her child depleted the group's money cap? This isn't about me, if you read my other post. I didn't care if I myself lost coverage, but I did feel for those who needed and wanted theirs.

What would be your solution for that? The only thing I can think of would be single payer and not employer group coverage.

[rug]

42. What happens when the insurance company refuses to pay for anyone's treatment.

The solution is - at least - single payer.

[avebury]

29. Yes it is the parents decision to seek whatever level care they choose.

It is also a doctor's or hospital's choice to decide when to refuse additional treatment (remember the Hippocratic Oath) if they deem that further treatment is not in the best interest of a patient. It is then the parents' right to move the child to somewhere else that will agree to treat the child. It also becomes the right of the Insurance Company to finally cut off an individual or group due to excessive costs (or increase their policies to effectively price you out of that policy). There are several entities that exert their rights along this path. The consequence of one mother's choices had a negative consequences on all of her co-workers in that they ended up loosing their insurance due to no fault of their own and their employer was forced to try to find replacement insurance. All the co-workers lost their right of choice in insurance policies.

You can be sympathetic with the birth mother and still understand the frustration of the HockeyMom. Personally, if a fetus has been deemed non-viable, even with the use of extraordinary efforts, I would find the parents to be extremely self centered to put a baby through endless medical treatments if there is no chance of a positive outcome. I think they do so more out of personal guilt, wondering if they did something or did not do something that led to their child's condition. My full sympathy lies with the child who did not ask to be created and born under those cirumstances and has no ability to express its own desires. For that child is not able to ask for a DNR directive in its medical chart.

[HockeyMom]

40. Thank you

You put it very well exactly how I feel.

[rug]

45. I don't equate the right of an insurance company to make a profit with a patient's right to obtain

medical care.

The issue is not simply with pregnancy, it's with all medical decisions.

It is odious to buy into the ideology that it is the duty, at the risk of penalty, of others to ensure the profitability of a health insurance company.

The problem with it is the false dilemma of others paying for your sick family member versus no treatment.

What is left out of the equation is the company's profits. That factor should be the last to be considered and the first to be jettisoned.

[avebury]

47. I was not implying that any one decision in the chain of

events is right or wrong, I was stating the simple facts regardless of emotion.

For me the bigger issue rests with family members who are more intuned to their personal emotional reaction to the medical situation of a family member then to consider what is in the best interest of that family member. People tend to get way too caught up with "Oh the poor family, what a horrible tragedy" instead of focusing on, in this instance, what was in the best interest of the child. I cannot even imagine what that child went through in its brief life being forced to undergo who know what medical procedures. I don't know what his/her quality of life was to begin with and then you add to that the pain and suffering that numerous medical procedures had to have brought to that child, all the while knowing that it was never a matter of if but when the child would ultimately die. I am sorry but the mental anguish of a parent should not trump the intentional further infliction of pain to a child. Ultimately, the child should always have come first. In this case, the mother put her needs way above that of her child.

As I said in another post, my sympathy rests solely with the child who never had a say in what happened to him/her.

[Marrah_G]

27. The mother made the choice to carry to term

The doctors advised her not to, but she did anyway, as is her right as a mother.

Was she in some denial? probably. But until you have been faced with that decision, don't judge. And those who have been, would never judge. It is one of the most gut wrenching decisions to make as a woman.

[avebury]

31. As gut wrenching as a situation like this is, I would

hope that any parents would be able to set aside their emotional trauma and focus on what is in the best interest of the child. I think that guilt plays a huge role in parents insisting on ongoing extraordinary efforts when their child has no real viable life. I don't know if they ever stop to really ask what is their child experiencing throughout its short life (for example pain).

[Shrike47]

33. Is it child abuse to bear a child who you know will die soon, in pain?

I have thought about that a lot in the past few years.

[kestrel91316]

44. Yes, but in all truth, anencephalics cannot experience pain OR ANYTHING ELSE

because they have no cerebral cortex. They lack the very thing that makes one a "person".

[ismnotwasm]

34. I see your point

But it was this woman's choice to keep the baby. I think your example would have been more effective if this wasn't so. If a woman is in this situation and has no choice, that is heinous and a human rights violation.

Where I work, we have tons of ethical situations. Nurses often suffer from what's called "moral distress"

I'll give you a situation with some identifying details changed or omitted.

We have a patient, what's called a "frequent flyer" in this case an abusive drug addict. He requires a particular treatment that needs a permanent type of of IV access. He had, through lifestyle and addiction, infected every of of these IV accesses, has gone to ICU in septic shock several times, has costs the hospital hundreds of thousands of dollars. He is abusive, occasionally violent. We cannot refuse to treat it's against the law, and quite frankly morally repugnant to me even if I scroll my eyes when I see him on the admission list.

Yet you'd be surprised how many people pull out their utilitarian ethics and talk about "wasting resources" that always pisses me off when it comes to human beings.

[HockeyMom]

39. I understand that but

you also cannot treat a person who refuses treatment. If a patient refuses treatment, gets dressed, signs the discharge papers, and walks out even if that means he will die, you cannot do a thing. Same with DNR. My Uncle did the former and my Mom had the latter.

[Shrike47]

35. Another question: should the child be able to sue the mother for wrongful birth?

Through a guardian ad litem.

(For any other lawyers: I am aware of the precedent on this issue.)

[KamaAina]

36. The insurance company that dropped you because of that should have been prosecuted

[HockeyMom]

37. Her doctor told her the child was Anencelopic

That is what why I suppose he said "Incompatible with Life". I am not a medical person, but as our Agency Head described it his head was about the size of a tomato. His heart and lungs were both malformed and growing outside his body, among other conditions that I don't remember. This happened a few years after that similar case in Texas. That case was also talked about when this happened. He had no hope to survive very long. Was he even aware of anything? From what I have heard, probably not. This was not some disability or only "perfect" babies being born. He was doomed. Medical science cannot put in an artificial brain.

Her choice to not have that abortion, BUT in a case like this when is enough after birth? THAT is my problem with this, and the doctors at the FIRST hospital said after six months it was enough. So some of you think they should just keep trying to keep the baby artifically alive just to see how long they can and because the mother (father not in the picture) wanted to? That is very, very CRUEL IMHO. I couldn't do that to my animals, as someone said, let alone to a child.

Give him just routine care and let nature/god take it's course. Hospice maybe. He was not mean to live, any more than my ectopic was. Should I have told them to take it out of my fallopian tube and put it in my uterus because I wanted it to LIVE? I should have foreseen this with how I was treated in that hospital. Life, no matter what. Babies, or the Elderly.

Some of the comments on here really frighten me. I better get down in legal forms what I myself want. Kuddos to my Mom for being beyond her times.

[Shrike47]

38. Hang in there.

[Sheldon Cooper]

43. No one in this thread is advocating 'keep trying to keep the baby artificially alive

just to see how long they can...'. That's a dishonest statement.

People are responding to two things: 1) no woman should be forced to abort a fetus against her wishes, and 2) the decision to prolong this infant's life is ultimately up to the parents and the doctors. When you have outsiders, like yourself, wanting to have a say in the decision making process, you come very close to those much-feared death panels. And people with disabilities have every right to fear that they'll be on the chopping block next time their insurance company wants to save money by cutting benefits to their coworkers and families. You simply can't have people's lives (including you and your children) put up for a vote to the guy in the next cubicle.

And end of life decisions made by competent adults are not what is being discussed here. Now, your insurance company should not have been allowed to drop you because of the high cost of covering this baby. They suck for doing it. I believe that the ACA now prevents that from happening, although I am not certain.

[HockeyMom]

51. The first set of doctors were against prolonging its life after six months

that is why she shopped around for hospitals to find one willing to keep performing extraordinary/experimental care. It was a Catholic hospital which agreed. Surprised?

I will agree that whatever HER decision her choice should not have had consequences for anyone else, i.e, dropping insurance for hundreds of others, but the way it stands today, it is a pooled resource. This gets to the subject of healthy people subsidizing those who aren't, and paying others consequences. I think we all can agree on this point. It is a broken system and needs fixing.

[kestrel91316]

41. We are going to have to set limits on how much futile care is provided to ANYONE who

has been given a hopeless prognosis with respect to brain function, at the very least. No nation can afford to keep breathing "corpses" alive like this, especially when care for non-corpses suffers. It's one of the few situations when I think insurance companies should be able to put their foot down.

IMHO, anencephalic infants should be provided comfort care only until they die.

[OwnedByCats]

49. Nobody should be forced to have an abortion,

and nobody should be forced to give birth. It was her decision. Do I personally think it would have been kinder to have that abortion? Oh definitely, no doubt about it. I could never do that to my child, especially one with anencephaly. Why delay the inevitable? However it wasn't up to you, or me, but up to her. The insurance situation sucks no doubt, but that's on the insurance company. You start granting people the right to make these decisions for other people, it will be a slippery slope.

[HockeyMom]

53. What would you do if your 11 year old son had terminal cancer?

Perhaps at 65 years old, I have had more life experiences than many here. My husband's coworker had a son with cancer. He had been treated for years with chemo, hospitalizations, meds, etc. When he was 11, he was admitted for another round of his procedures. When the nurse came to prep him, he told her to stop, no more, that he didn't want it. She called his doctor in and the boy told the doctor that he wanted no more treatment. His cancer by then had spread through most of his body, and they were only trying to contain it to keep him alive for as long as they could. It could not be cured at that point.

His doctor called the parents in to have consultation in with the BOY, who was a Minor. He told his parents that he did not want anymore procedures. He did not want to endure anymore pain and suffering from treatments. If he was doing to die, he wanted to die home. He wanted to play with his little brother and his dog. He wanted to play video games and watch TV. He wanted to DIE IN HIS ROOM in his own bed, not in a hospital bed. Hello, people, this is a REAL CHILD saying this. He, himself, has no choice? His PARENTS rule on how he is to die because he is child?

His Dad, my husband's coworker, said his son's words hit him like a slap in the face. He said with all the years of trying to prolong his son's life he had never considered what his son might actually want for himself. He said he was being selfish in prolonging his son's suffering to keep him alive just for himself. Legally, yes, the parents could have tried to prolong the treatment for their Minor Son, but even at 11 years old a judge would have considered the child's wishes if it came to that.

The boy came home with no more treatments and only meds to ease his pain. He passed away 6 months later at home with his parents, his little brother, and his dog. My husband's coworker honored what his son wanted, and he said his son died happy being where he wanted to be.

Line up to argue about LIFE on this. True experience, and I even met the boy. Beautiful, and very intelligent, little boy. Sad that he had to die, but he is no longer in pain, and he died the way he wanted to. SLAM me for this if you want.