Obamacare and Disability

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Like many Americans, I watched President Obama talk about his health care plan on TV tonight. Many others will comment on the plan in general, but I want to point out what I think are some possible implications for care of the disabled.

First of all, FULL DISCLOSURE-***I am a DOCTOR***. Now I know in a lot of people's minds that immediately may make them tune out anything that I will say, assuming that whatever I say will be self serving. I happen to think that since I have worked continuously in health care in one job or another continuously for decades (yikes!) that I may just have some insights into a couple of things. Your mileage may vary.

Basically, on the surface, today's talk by the President promised that nearly everyone will be covered, you won't lose your present doctor or insurance choice, you'll get all the health care you need, and it won't cost you or the country any more money. Sounds great, right?

Well, anyone with a lick of sense knows that all of that can't be true. So let's look at one of the things that WAS said, and think about it's implications.

One of the things that has been advocated (and that the President heartily endorses) is some sort of a national group of "health care experts" that would determine what treatments should be covered. This group would be a "non-partisan" group in Washington, D.C. This is being sold as "We'll eliminate unnecessary treatment", but there have been no parameters floated saying exactly what kind of treatments they will eliminate in order to save money.

I suspect that some of them may be reasonable, such as requiring prescription of generic drugs when available (though there are several times when patients react badly to a generic, and not to a brand name). Also, undoubtedly, many services for senior citizens will be either delayed or denied. Such things as hip replacements and knee replacements, as well as cataract surgery. Criteria will be imposed, and if someone is judged either to be not debilitated enough, or not to have enough useful years left, then they will be left without service. No one in the administration will admit this, but all healthcare economists pretty much agree on this. This is certainly what happens in other countries that have nationalized their healthcare system.

Now the reason I bring this anonymous, faceless committee up is the effect they may have on the disabled. The whole concept of futility and futile care has been big in ethical circles of late, and this concept is sure to enter into any decisions made by such a committee.

The problem becomes when this central committee decides on what constitutes futile care for a particular person. Instead of a decision being made with the person themself, their doctor, and their family (if the patient cannot communicate), this central committee will make decisions as to whether a particular person's life is worth investing more health care dollars into.

I don't know about you, but I don't have much trust that such a committee won't have an inbred bias against the disabled. Society as a whole is biased against the disabled, but society as a whole up to now hasn't been able to out and out condemn individuals to die from lack of treatment. Such a committee will.

For those of you that will disagree with me, ask your legislator if he/she can guarantee you that no disabled person will be denied care based on their disability. They can't.

Also one last thought for tonight. The non-partisan Congressional Budget Office predicts that millions of Americans will be forced out of their present insurance plans by the institution of Obamacare, and force into the "public option". The most telling thing (IMO) regarding the public option is that both the House of Representatives, as well as the President himself tonight, refuse to include themselves in the public option. The President waffled tonight when asked whether he would submit himself to the same requirements as the public option. The House last week voted down an amendment to the health care bill which would have required House members to take the public option.

If they don't want that option for themselves, why is it good enough for millions of other Americans?

A Sad Case

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I saw this story yesterday, "Mother Accused of Withholding Cancer Medication from Autistic Son", in which a mother of an eight year old autistic son with lymphoma has been charged with neglect for failing to give him his chemotherapy at home.

Basically, the child had lymphoma, got his initial chemotherapy, then was supposed to follow up with home chemotherapy and additional follow up appointments, many of which were supposedly missed. Now the tumor has recurred, and is more aggressive, and the child's chance of survival has gone from 90% to 10%.

To complicate the situation, in addition to the child being autistic, the parents are going thru what has been described as a "bitter divorce", where the father hasn't had recent contact with his son, but has now assumed custody.

Orac has a good post up on this, but I thought I'd add my take.

In ethics, one way of approaching problems where there is conflict is termed the "4 Principles" approach. The authors Beuchamp and Childress wrote a groundbreaking book on medical ethics in 1979, which is now in its fifth edition. In this book, the authors describe four principles that could be used to assist in deciding questions of medical ethics. The four principles are usually listed as "autonomy, beneficence, non-maleficence, and justice". A fairly good concise overview of these principles can be found here.

Although Beuchamp and Childress never argued that any one principle should be more important than any of the others, in American medicine and ethics circles autonomy has generally been held to be "first among equals". What this means is that, generally speaking, a competent adult has the right to refuse any treatment, even if doing so would kill them.

As children generally can't decide for themselves what is best for them (especially 8 year olds), their parents are usually given broad leeway in making decisions for them. Historically speaking, however, there are definite limits to this authority.

For instance, if a child needs a life saving blood transfusion but the parent's religion doesn't allow for any blood products, then it is routine in children's hospitals for emergency custody to be granted to someone appointed by the state, who will approve the transfusion. This case appears to be similar, but not totally identical, to the case of a blood transfusion. In this case, a relatively simple (but still with arguably potential serious side effects) was withheld from the child by the mother (according to the charges). The question is whether the mother should be able to act on her son's behalf and refuse treatment.

Before going further into this, let's go back to the other three principles.

Beneficence means doing the best thing for the patient. It would seem obvious that giving the child the chemotherapy would be the best thing. But each adult has the right to refuse treatment, even chemotherapy. And even with the chemotherapy, there would be a 10% chance of dying. A competent person might say that they would rather have a 10% chance of living, and not have to undergo the pain of needlesticks, the constant nausea, hair loss, weight loss, fatigue, etc. But certainly most people would choose to undergo all of these things in order to improve their chances of survival from 10% to 90%. And most of the time, although chemo is still chemo, outpatient follow up treatments generally have a lot less severe side effects than the initial inpatient treatment.

Although I often think of this Disney character when I hear the word, non-maleficence, what it actually refers to is not harming the patient. The second thing I think of (after the Disney character) is the medical aphorism "First, do no harm." Again, what we balance here is a large potential future harm (recurrence of the tumor, which is what in fact happened) against the immediate harm of undergoing treatment. Perhaps undergoing treatment for this autistic child was particularly difficult. Treatment may have included injections of chemotherapy into the spinal canal, and depending on whether they were willing to anesthetize the child for these, it might have been fairly traumatic (even undergoing anesthesia to have it done might be fairly traumatic). So it's not necessarily a total slam dunk when it comes to considering non-maleficence.

Finally there's justice, which basically means doing what's fair, as well as what's best for society as a whole. Society benefits from having healthy citizens. And most people would agree that all people deserve to get chemotherapy for a tumor. So I think that most would agree that justice would fall on the side of the child getting chemotherapy.

So what we are left with is questions of the mom's ability to speak for the child against the state's interest in having healthy citizens, and beneficence weighing heavily on treating the disease process, as the treatment is mostly safe, though it has some potential bad side effects.

I think that most people would treat their child in a situation such as this, which is why people are up in arms, and why charges have been filed. The mother may have a certain degree of ignorance regarding the risks involved, and may also not have a lot of support in her life at the moment (though I know that's no excuse). The father may or not be a "victim" in all this. He may share some of the blame for not picking up some of the slack, or may have been actively excluded by his wife. It's hard to tell from outside.

In the end it doesn't look forward for the child, but we can all hope for miracles. And I hope that the child's autism did not enter into the mom's equation of whether to withhold treatment or not.

Skate x Skate

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Multiplication tables (as well as most other math facts) have been a hard go for Buddy Boy. His third grade class started on the "8's" and "9's" back in March, and he still hadn't gotten them down by the end of the school year. Liz worked with him, his teachers tried various strategies, but nothing seemed to work. Every time Buddy Boy had a problem, he had to stop and sequentially add things, or if he was able to remember a rule, he would take minutes to painstakingly work through it step by step.

So near the end of school Liz went searching for a new approach, and as soon as school was out, she was ready with some workbooks. Two of the books were variations on regular math workbooks, but one of them was decidedly different. This one, "Memorize in Minutes: The Times Tables" looked rather silly, and I didn't hold out much hope for it.

The book has silly pictures (complete with silly stories for each one) to teach the times tables. The times table above is "8 x 8 = 64", and down below it says "skate x skate = sticky floor". The accompanying story describes how two skaters went skating and got stuck to a sticky floor, which was covered with a gooey, sticky, substance. Huh? How was a series of stories going to get Buddy Boy to remember his multiplication tables? Even if he did, I figured it wouldn't save him any time over what he was already doing.

It worked.

What couldn't be accomplished in months was virtually all memorized in a week. Buddy Boy and Liz worked their way through the "8's" and "9's" in a week, and are going back to some of the other numbers. Buddy Boy demonstrated his now fairly rapid firing off of various multiplication facts. It was truly amazing. What had before taken minutes now took about 2 seconds each. I was impressed.

So if you're having similar issues, this might be something you want to look at. The website's here. We paid for our book, and have no financial interest in this product. But I'm glad that someone thought "outside the box" on this one, and put this together.

Call Me Ishmael

Summer is a great time in our house. Mostly because school is out. There's no waiting for dreaded phone calls, no worrying about academics being shunted aside in favor of watered down "make work" or "compliance", and little worry about increased stress levels (for all of us).

Summer is a time of tending the garden, kids going to camp, taking a vacation (holiday), and neighborhood festivals. Academics aren't totally left behind, but they're done on our schedule and in light of our kids' needs, not on the school system's. Liz does a yeoman's job of making sure the kids read (and get read to) each day, and filling the gaps of things they didn't quite get during the school year. She's even found kids versions of classic books for them to read.

Buddy Boy struggles somewhat with math, and Liz has systematically investigated how he processes math problems, and come up with some novel strategies to assist him. After months of failing to be able to memorize basic multiplication facts (e.g., 6 x 6 = 36), Liz found some workbooks that use stories and rhymes to assist in memorizing math facts. They seem to be working.

But studying is pretty low key, and the kids don't seem to mind a couple of short sessions each day.

So what did we do today, when temperatures topped out at 98 degrees Fahrenheit (36.7 Celcius)? Stay inside, crank up the air conditioning? No way. There was a local carnival in a nearby park, and the kids kept asking to go.

We didn't stay all that long (it was pretty hot, after all), but the kids had a good time. Afterwards, we went to a local ice cream parlor for another time honored rite of summer.

Sweet Pea had a little trepidation about tackling the ride pictured above (you sit in a seat that goes around and around in a big 50 feet vertical circle), but eventually said that she wanted to do it. Although she looked a bit scared when it started up, by the end of the ride she loved it. Buddy Boy went with her, and provided moral support.

Buddy Boy's also been working on jokes lately (everything from "knock knock" jokes to puns). Sometimes they're funny, sometimes they're not, but he's getting much better overall. When he got off the ride, he walked up to us and said very seriously, "Call me Ishmael". We just had to laugh.

Dignity

So I was watching TV this week when this ad came on. After it became apparent that it was for a charitable organization, I expected to see some variation of the usual "pity party" that is all too common amongst many charitable groups. You know, "Aren't we great that we are helping these poor, helpless people thing. Instead I saw this. This is not my congregation, but I invite you to watch an alternative way to depict serving others in society.

Wouldn't it be great if groups like Autism Speaks took such an approach?
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"Dignity"
Trinity Lutheran Church
Volunteers serving the homeless
First course: dignity

Read the story behind the ad.

I Can See Clearly Now

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Q: What makes a third grade boy want to sit at the front of the class?

A: He needs glasses.

After getting some hints that Buddy Boy needed some assistance (mis-reading the board, asking to sit closer), we took him to the eye doctor. He actually was both quite fascinated by, as well as cooperative with, the whole process.



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After being shown several pages in a book similar to the above and correctly identifying the numbers he announced "At least we know I'm not color blind." His vision isn't that all bad (it's between 20/30 and 20/40) but since he's having some difficulty with schoolwork we decided to go ahead and get him the glasses. He'll have the whole summer to get used to them, so they'll feel natural by the start of next school year.

So far things seem to be going all right with them.

Meanwhile, now that he's seeing a bit clearer, he's also seeing autism everywhere. Or at least some places it probably isn't.

Buddy Boy's teacher's husband is also a teacher at his school. He teaches music, but not Buddy Boy's class. But Buddy Boy knows him because at the end of the day he comes to Buddy Boy's class to wait for his wife. While he waits, he usually uses the computer, and trys not to get in the way.

Evidently Buddy Boy has decided that Mr. L is autistic. He told his teacher, Mrs. L, this last week. "Why do you say that, Buddy Boy?" she asked. "Well, he spends a lot of time on the computer, doesn't answer my questions when I talk to him, and sometimes is a little grumpy." Mrs. L just replied "Those are interesting observations." Now Mr. L is a quiet guy, but I hardly think he's on the spectrum. But since Mrs. L didn't out and out deny that her husband was autistic, Buddy Boy took this as affirmation.

So this week Mrs. L is appropriately laying down the rules for Buddy Boy when he wasn't doing something he should, and he comes out with "Mrs. L, since you are married to someone who is autistic, I would think that you would be a litte more understanding of me!"

Two more weeks until school is out for the kids! We're counting the days.

Just Claim They Were Autistic

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In a story on the wire yesterday, a man in Salem, Oregon was arrested and jailed after shocking his four children with a shock collar meant to train dogs. According to the story

"Todd Marcum, 41, said he did it "because he thought it was funny," Salem Police Lt. Dave Okada said. ...

Marcum was taken into custody on four charges of first-degree criminal mistreatment. He is in the Marion County jail."

Now if Marcum had had a lick of sense, he would have just told the police that he thought his children were autistic, and needed some training. Because he had been on the internet, and he knew that the Judge Rotenberg Center uses shocks to control autistic kids. And it's perfectly legal. Other states even send their autistic kids to Massachusetts to the JRC so they can be shocked, too.

Marcum could have stated that his children were swearing, nagging, or flapping their hands, and thus qualified to receive shocks.

Now the only problem is that the dog collar that Marcum used was probably a lot less powerful than the one that is routinely used at the JRC. The dog collar is a small, self contained unit, while the JRC devices need a backpack to haul around. The dog collar will stimulate for up to a half second, while the "GED" devices used by the JRC will shock you for up to 2 seconds.

I found out while poking around that dog collars are subject to legal regulations, which state (amongst other things) that they can be applied for no more than 12 hours in any 24 hour period, and they can't put out more than 15 milliamps root mean square. The JRC uses devices that put out an average (not maximum) of 15 milliamps RMS, and a maximum of 45 milliamps RMS (fully three times as powerful as the maximum allowed for a dog collar).

So Marcum, if you or your lawyer are reading this, just claim you were using a tried and tested method of disciplining your kids, who you suspect are autistic (don't forget the autistic part-people might not approve of your behavior otherwise).

Perhaps the Massachusetts and New York legislatures would be interested in the torture by electric shocks that is occurring if there were dogs that were being shocked. Because they haven't been interested when it was only autistic individuals involved.