the glory and the horror

This CNN article highlights a continuing question in the realm of medical ethics and philosophy of medicine. The basic question is whether or not parents have complete and inalienable rights to decide what is in their child’s best interest in terms of their health care. In this case, the child has Hodgkin’s lymphoma, a very treatable condition, although chemotherapy is never easy.

However, compared to many other malignancies, the prognosis is very good, and the treatment regimens are well-understood with significant data to support current treatment regimens.

But it appears that the family does not believe that pursuing futher allopathic medical treatment (conventional western medicine) is in the child’s best interest, and instead have chosen to pursue other treatment courses, namely a Native American modality (or so says the article).

So does the State (or Society) have a compelling case in “protecting” the child from his parents wishes? Where, if at all, do the parents’ rights to make decisions for the minor end?

This has been debated in the ethics literature in the past, and there are arguments that go back and forth. However, this is the real thing, with a real child’s life and well-being at stake.

Do you invoke the authority of the state and force the family to return the child for treatment?

So I get to go to my first professional meeting later this year, as a presenter no less. Thankfully, the program will subsidize the trip, but the total is probably going to be more than the amount the program will provide. Oh well.

So this conference is in Florida in mid-May. I’ve never been to Florida (except for Key West on the cruise a couple years ago, which doesn’t count). I’ve never been much of a lay out on the beach sort of person, and I’m only going to be there for a few days, since I’m still technically on a rotation at the time. It’ll be nice to see what it’s like, though.

Here is a fun page to get at 0020 while on call.

Nurse (in a thick Indian accent, a la Apu): Doctor, the medical examiner called about one of Dr. M’s patients who passed away.

Me: OK. What patient?

Nurse: Um. I’m not familiar with the patient.

Me: Sure, but who was it?

Nurse: It was the medical examiner.

Me: No, what patient was the medical examiner calling about?

Nurse: Oh, I’m not familiar with the patient.

Me: I mean what is the patient’s name?

Nurse: I don’t know the patient’s name.

Me: So what I can do for you if neither of us know who the medical examiner is calling about?

Nurse: Ok doctor. Let me check on that and call you back.

Me: Ok. Thanks.

I just wanted to highlight a new rule that the Department of Health and Human Services is considering implementing to protect the right of conscience for health care providers.

You can read more about it at The Center Blog, which my friend Isaac contributes to.

I think it is very important that the right of conscience, in general, and specifically in medicine, be preserved in the US. It is better to be free to live according to your conscience, and it would be nice to not have your medical license revoked simply because you are opposed to abortion or some other procedure.

BBC NEWS | Africa | Nigeria arranges ‘HIV marriages’

I’ve been meaning to comment about this BBC article for several weeks now. I think it is commendable that there are efforts to relieve the pressure/stigma associated with HIV/AIDS, especially in developing countries. However, I think this does not address the underlying issue of HOW those people got HIV in the first place. In some of these cultures, there is a world of underground prostitution, even in conservative Muslim countries/regions.

Additionally, there are many cultures that still condone polygamy, and that is significant as recent studies have shown that one of the mechanisms of significant HIV spread in Africa is polygamy, as opposed to serial promiscuity, which is more common in developed parts of the world. Having so many concurrent partners generally makes HIV easier to transmit to women, especially women of child-bearing age, and that is another aspect of the problem.

I can definitely see what some of these groups are trying to do, but it’s too little, too late, I think. The key remains prevention, and that means keeping people from getting infected in the first place. After all, this “HIV marriage” idea only works when both partners know that they’re infected, and there are still significant barriers to getting tested, much less making it known to others that you’re infected.

PLoS ONE: Lack of Association between Measles Virus Vaccine and Autism with Enteropathy: A Case-Control Study

A new study that demonstrates continued lack of association between the MMR vaccine and autism. This particular study is essentially a repeat of one down several decades ago. One of the co-authors on that old study is also a co-author on this study, and one of the labs used in that first study was also used in this study, to try to give it some credibility as truly trying to repeat the original study.

The original hypothesis was that the inactivated virus from the vaccine made its way to the gut, and caused a breakdown of some sort in the natural barrier that the gut is, and that something makes it way across the gut into the bloodstream, triggering/contributing/setting off autism.

This study appears to show no association between the MMR vaccine and anything in the gut or the onset of autism.

OK, this is dorky and possibly only appealing to me because I’m a physician.

Bacteria Tower Defense

Apparently coded by an MD, and actually quite accurate in terms of antibiotic coverage and such. Kinda clever. I do miss the regular DTD showing you what’s coming up next so you can plan your map better, but as in real life, you don’t really know what the next patient is coming in with.

Saving Lives Creating Hope Trailer

Above is a negative rapid HIV test. This test result means that there are NO circulating antibodies to HIV in the body. It is not a perfect test, because it is possible to have been infected with HIV in recent months and not have the antibodies in the blood to be detected yet. That’s usually more of a problem with adults. For children, once they have cleared mom’s antibodies (usually within 12-18 months after birth), a negative rapid test means there is no HIV in their blood. That is a wonderful and very important thing, because according to some studies, >40% of women coming for antenatal care are HIV positive, and without treatment of some sort, a good 25-30% of babies born to HIV-positive women will acquire HIV from mom. That means ~10% of all children in Swaziland would be born with HIV if the mothers got no treatment. That means that at 18 months, a little strip that looks like that is an amazing relief, because that means it’s one less thing to worry about for that Swazi child. There may still be other challenges to face, such as TB and malnutrition, but they will be more prepared to face those things with an intact immune system.

Above is a positive rapid HIV test. This test result means that there are circulating antibodies to HIV in the body. This means that a child may have HIV in her body, and for adults, it means that they definitely do. For those who see this result, it means that whether they like it or not, their world has been turned upside-down. In Africa, a diagnosis of HIV is still surrounded by stigma. Tie that in with certain cultural gender roles and expectations, and all of a sudden, it’s not so easy to get tested, much less get ARVs (anti-retroviral medications).

The ARVs are readily available. I am unclear on the exact funding sources, but it is my understanding that anyone can get ARVs for free in this country from any number of locations, ranging from in the city (like the Baylor COE) to outlying rural clinics (where we do our outreach clinics). Visits to Baylor COE are free of charge. Even so, there are wives whose husbands refuse to let them be tested, and if they are tested, refuse to let them start ARVs when needed, and when started, prevent them from coming back for follow-up and refills.

There are many people who fully acknowledge that there is an HIV problem, and that Swazis are dying in unprecedented numbers – and still refuse to get themselves tested.

Today, I coded a 6 month old with one of the PAC docs. Today was the child’s first visit to the Baylor clinic. I can’t recall ever coding a child before. I did not imagine that I would be doing it in Swaziland.

We were initially informed of the kid arriving, and just looking sick. At the Baylor clinic, we have a mini-ER that we triage sick-looking people to for acute stabilization. As with many children who come in for their first appointment, we know little to nothing about what is going on. On first glance, the child didn’t appear to be malnourished, but didn’t look ok. When we walked into the room, he seemed to be breathing pretty hard, but slowly. I didn’t recognize it at first, since I’m not used to seeing children, but looking back, it seems clear now that the child was in agonal breathing. At first, I grabbed the oximeter while the PAC doc and a nurse started examining the child. Not sure where to put the adult-sized oximeter on the child, I left it on the exam table as the nurse asked for my assistance with the oxygen tank.

I was fighting the O2 tank when I turned back around and the PAC doc told me that the mask wasn’t needed anymore, and that we would need to bag-mask the child.

All of this was happening with the mother in the room. I didn’t get much a chance to look around, but I could see her out of the corner of my eye, sitting in a chair along the wall, clutching a blanket and watching us intently.

We started chest compressions and continued to try to bag the child. We still didn’t have IV access yet, but another PAC doc was trying to find any vein, anything, for access. We don’t have the ability to intubate here, as there is only one ventilator in the country (rumored to be reserved for the royal family), so we pressed on.

After a short time of bag-mask ventilation, the child began to vomit whitish material, presumably formula and/or breast milk, and so we suctioned the child as best as we could. There was no gag reflex.

We continued for a few more minutes, but it quickly became clear that there was little more that we could do. As soon as the child’s mother saw us taking the ambu-bag off and stopping chest compressions, she knew. Immediately, her wails filled the room and her face was wracked with pain.

Her child died, and we weren’t able to stop it.

This wasn’t the first child to die in the clinic, and it won’t be the last.