Frontiers of MedicineCliff -- Friday, May 13, 2011 -- 05:20:58 PM
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Chris was eligible for medicaid and ssi for his first 5 years [we live in GA]. I paid his premiums for his primary insurance (GA - BCBS). Medicaid paid for his co-pays and his deductibles. SSI gave him $30 a month.
According to the statement of benefit that I received the hospitals / drs charged about 1 mil in his first year, most of that in the first 16 weeks. Second year was about 30K with most of that being the IC with pneumonia.
Since he turned 5 I pay for all his medical premiums, co-pays, deductibles and prescriptions.
That's pretty expensive, but he was born at 28 weeks. 28 weeks usually have some health problems, but nothing like 24 weeks.
And look, I understand that every parent wants to keep their child alive no matter what, and of course I'm sure I'd be like that, too. But it's not just that the costs are exorbitant healthwise. Many of these children end up in some sort of pretense of attending public school, at hundreds of thousands of dollars a year, and all sorts of other associated costs.
Doctors have to learn to say no.
I have posted before about my grandnieces who were 11.5 oz and 1.5 oz when born. I hope to God my niece doesn't have anymore children. I visited for the first time in March- the oldest walks, obviously understands words, but has nerve damage that makes it hard for her to talk (when she cries it's very soft), glasses- I think she is legally blind in one eye, can eat only thickened purees. The girls both have a therapy schedule that requires my niece and her mother to handle. I don't know what will be the long term outcome.
"Doctors have to learn to say no."
OK. First, however, give them the legal right to say no and immunity from prosecution when saying no overrules the wishes of the parent(s) and results in the death of an otherwise viable infant who would be left with severe, lifelong disabilities.
That's a big order. But yes, that's what would have to happen.
We are driven, the majority of us, to preserve the life of our offspring, and I believe doctors are as driven to preserve the life of their patients. But as technology increases, the lines blur as to what is considered viable to live.
One thing that interests me is that screening tests for disabilities are now routine, and have become part of the standard of care for pregnant women. Many women (in Canada, what I know about) choose to abort if their fetus is abnormal in some way, such as for Down Syndrome, and many of these abortions take place (again in Canada) at 20-24 weeks. While the purpose is to give families more information about their child -- and women for the most part very much want to participate in prenatal screening -- but the underlying purpose of it is to give families/women a chance to abort a disabled child. (Is this the right point to interject that I'm adamantly pro-choice? I am.) Many women and families give the reason that they don't feel they could adequately support a disabled child, in terms of emotional or financial care.
However, babies who are born at not such a different gestation length cost huge amounts of money (generally paid for by the province) and some go home with profound disabilities -- some of the same disabilities that the same women and families were trying to screen out when they had an 11- or 13-week screening, and may have gone on to abort if they'd had a trisomy baby rather than a premature baby who is spastic/deaf etc.
I'm not saying any of this is wrong -- it plays out the way it plays out -- but it does give me pause for thought, about how we select different disabled populations.
I agree, Cliff--and Patience, that's a great point. A Down's syndrome child has a much better shot at life than these kids do--and for a lot less money. Yet women abort them routinely at the same age that other kids are being saved at the long term cost of millions.
I know some people whose youngest daughter has Wolff-Hirschorn syndrome. They both have high-paying jobs, good insurance plans, and have worked like heroes, with the help of both their families, to maintain this little girl, who is middle-school age and is somewhat sentient--but she has never spoken, never eaten normally; her other bodily functions are impaired as well. She has various walkers and other vehicles by which she sort of gets around, but most of the time, they carry her around as if she were Charlie McCarthy. (She is very stunted in her growth.) On top of that, they have managed it so that the life of her older, normal sister hasn't been subsumed to her younger sister's needs. But not everybody has the resources they have, and so a kid born into their family like that wouldn't necessarily fare as well. Me, I wouldn't have had that child--I believe that she deserved to be born into better circumstances.
I don't think you can put a limit on preemies if we're going to keep trying to save people's lives who have, say, severe car accidents and head injuries and whatnot. It's a fine line to euthanasia from there. And I think throwing abortion in there is a red herring; the lives of someone who's been born and a fetus aren't at all the same (interjection: I am also adamantly pro-choice).
I don't think I'd like to live in a society that didn't give every (born, independent) life as much of a chance as possible, whatever the age.
I don't know what to say or do. I strongly believe that heroic efforts to save a barely-viable fetus are in the long run not kind or loving, and in the here and now economically ruinous. But I also believe that medical Hail Marys are undesirable for older people too--it seems like the unintended complications and consequences make heroic intervention a fool's errand.
But if anybody breathes a word about "rationing" health care (e.g. not doing wildly expensive procedures that have a very low probability of success as defined by quality of life) all hell breaks loose.
There is a stigma attached, I think, to admitting or asking if a person is in a medical situation that calls for the end of life-saving procedures. In my personal life, when my mother was on life support there came a time when I asked other members of my family how much longer we were going to continue life support, considering the situation. Everyone in the room gasped, they were appalled. I said it. I know they must have considered it too. But people feel bad about themselves if they don't fight, don't do everything possible and I can only imagine it's more so if it involves a baby, not someone at the end of their life.
In February when my 86-year-old grandmother was clearly dying after three major strokes, the medical staff were visibly surprised and relieved when on her behalf we all collectively declined the feeding tube and asked for the IV to be removed. Her wishes were clear, but it was obviously unusual for the family to a) agree on what should be done and b) not want every possible life-prolonging option.
I think there's a danger, though, in judging someone else's quality of life. From what I understand often even the very disabled rate their quality of life quite highly. If you mean to judge the possibility of independence, that's different.
Oh, stop. If you can't understand the argument, that's one thing, but don't bring up old people or euthanasia. I'm not talking about quality of life. I'm talking about societal cost. These kids aren't old people who have contributed to society. They are developmentally stagnant, and their cost won't be paid by insurance companies,but taxpayers, through "disability" (except they were never abled) and public education--except they can't be educated.
So leave old people out of it, and stop yammering about quality of life. I'm talking about cold, hard, reality that these kids will cost millions, millions that we are obligated to pay by their very existence.
I agree it's a hard decision, and complicated. But you all are entirely missing the point if you're going to bring up old people--and yes, abortion is entirely relevant to the discussion, pro choice or not.
If you're going to talk cost, then old people definitely come into it. A big chunk of health care dollars are spent in the last 6 months of life (nobody can agree on the exact % but it is significant).
I don't see much difference between treating a seriously ill preemie and treating a seriously ill five-year-old, cost-wise. Neither has yet contributed much to society, if that's how we're going to measure things.
The difference between a seriously ill preemie, micro preemie, and a seriously ill five year old are potentially significant. It's a matter of quality of life and ability to support oneself. Many of these very ill preemies never go on to even be able to communicate with any meaning much less contribute to society. Millions of dollars are spent keeping them alive and once they reach school age being 'taught' in a public school. The seriously ill 5 year old presumably will get better or has a better shot any way.
So now we're going to stop treating anyone who might not be able to support themselves? Encephalitis, meningitis, acquired brain injury, quadriplegics?
If you can't grasp the difference, then you need to stay out of the conversation until you do, or at least understand that you are utterly irrelevant.
That's not it, either. Further evidence you don't have a clue.
I think we're up to exhibit 950 on the list of things you don't understand. Read back and try thinking.
Look, it's not that I don't think there's a valid discussion to be had about end of life. But we're talking about something different, and bringing these other subjects into it is pretty strong proof you don't understand this particular point.
Cliff's objection is entirely valid. But if insurance companies refuse to cover costs associated with births prior to 27 weeks, wouldn't that take it out of the doctor's hands and remove liability issues?
You've backed into the problem DTD mentioned, though. So far, Americans have not been capable of having an objective discussion of when to stop throwing money at a problem, whether it be babies or old people. Having insurance companies ration care would wind up backfiring. What would actually happen is that parents would sue the insurance companies for denying care, and pro-life groups and anyone looking to score a political point would pile on the bandwagon.