Utah family refuses chemotherapy for 12 yr old son

Great Debates
61

Stepping in with some clarifications.

The 70% survival rate is almost certainly for cases where the patient doesn’t have obviously detectable metastatic disease. The longer the delay, the greater the chances that obvious metastatic disease will develop, and the less likely it is that the child will benefit from the chemotherapy. So yes, three months IS a significant delay. Many pediatric cancers (and Ewing’s is one of them) are rapidly growing.

**

Actually, this isn’t that unusual a presentation. Soft-tissue Ewing’s is a well-known varient. And Ewing’s sarcoma has a prediliction for the mandible (jawbone) as well as the long bones in the body. So far, nothing about the case sounds particularly unusual.

**

Not with Ewing’s (and many other pediatric tumors) - the disease almost certainly already IS metastatic, the mets just aren’t large enough to pick up by conventional diagnostic techniques (such as bone marrow biopsy, or CT scans). The chemotherapy is needed to kill off those minute foci of metastatic tumor before they grow. Surgery alone is not optimal treatment for this sarcoma (although it’s certainly preferable to no treatment at all).

**

See above - “no detectable metastatic disease” DOES NOT mean that all the tumor cells have been removed. It just means that there are no metastatic foci larger than about 0.5 cm (which is the smallest size you can generally see on a CT scan). The boy’s body could be riddled with minute foci of tumor cells, which we have no way to detect currently; that’s why his physicians are recommending the chemo.

**

The genetic mutation isn’t present in all the cells in the body - rather, one cell develops the mutations needed to become cancerous, then divides to produce copies of itself. Kill off those cells, and you’ve cured the patient - he may go on to develop a different cancer when he gets older, but will almost certainly NOT develop a second case of Ewing’s sarcoma.

**

Well, now you know. Adjuvant chemotherapy is standard therapy for all cases of Ewing’s sarcoma because it’s been shown in clinical trials to improve overall survival, even in cases where there’s no obvious metastatic disease at the time of the initial diagnosis.

**

I just did, and I hope my explanation was helpful. Yes, adjuvant chemotherapy offers this child the best possible chance of long-term survival. And because this tumor is aggressive and rapidly growing, time does matter. And a month is certainly enough time in which to get a second opinion on the tumor pathology to confirm the initial diagnosis, as well as second opinions on theraputic options. The problem here isn’t one of parents being pressured to make an unreasonably rapid decision; it’s that the family is in denial about the seriousness of their son’s condition - and by the time the are ready to face that reality, it may well be too late to have any hope of curing this unfortunate child.

artemis

62

I’d be willing to bet their belief is religion based, and a religion that puts a strong emphasis on having children.

Could be wrong though, but I doubt it.

63

Mtgman

I understand your point and I think artemis did a wonderful job at addressing your medical concerns. Better than I could have done without a bunch of reading.

Our society stresses individual freedoms and freedoms of religion. I would never suggest that the state step in and dictate how a parent should raise a child in ordinary circumstances. This is not a moral relativistic question. We have a set of knowledge in this case that tells us what works and what doesn’t work. Our knowledge is quite limited: 70% with a horrible course of treatment isn’t pretty. But it is better than the alternatives.

And the word “better” is what it comes down to. This is not a touchy-feely situation where there is a lot of debate open to which decision is “better.” We can’t say Judaism is better than Christianity, but we can say that chemo is better than no chemo. We have an objectively superior path to take in this case, which has been shown by the unanimous decision by the doctors asked.

Say what you will about alternate therapies and courses of disease and so forth. Statistical aberrations like spontaneous remissions happen, but the majority of untreated cancers lead to death. The parents are choosing between 70% survival with chemo and probably a 1% or less survival without treatment. I don’t think the parents have the right to take the “worse” path for the child, and I think the state should step in and treat the child until he is mature enough to make his own decisions.

64

Why? I’m of the opinion that if their religion was a major factor, the articles would have made a big case about it (headline: “religious fanatics deny medical care to child”), as has been done many, many times in the past. Fringe religious beliefs that affect sick children are big news.

If you’re basing that on the part about them living in Utah, and commenting on the fact that Mormons tend to have a lot of children, then you may be interested to know that LDS people in general embrace modern medicine (and other scientific progress) with enthusiasm, believing that expanding knowledge comes from God–though what we do with it may not.

65

Genie thank you. I live near Pocatello so this story is on our local news nightly. Not once has the family’s religion been brought up, usually if they were LDS the news reports would say “Mormon Family Defies State”.

The father announced that the tests ran in Boise showed the child was cancer free, before the doctor even gave his results and made his recommendation. These people are in deep denial.

Yesterday they plea-bargained the kidnapping charge down to a misdemeanor. No jail time, no fine and it is wiped off their records in one year. Unfortunately the boy may not be alive to celebrate the anniversary.

66

Firstly, let me say that I very much appreciate the information you have given about the disease and the timeframes involved as well as the treatment options and diagnostic clarifications.

Ok, now back to the debate type stuff. It should be noted that the tumor was removed sometime in June of last year(2002). Over a full year before the diagnosis of cancer was made(Aug 2003). So any metastatic tumor cells have had over a year to grow into detectable tumors(about 5mm). Is it possible the parent’s claim that the latest tests show him as cancer free is correct? The known cancerous tissue was removed, metastatic foci, if they are present, are still undetectable over a year later. This doesn’t seem to fit with the idea of a rapidly-growing/spreading disease. Moreover, it doesn’t seem to fit with the sense of urgency the state has approached the issue with.

Or perhaps it is the reason for the sense of urgency. In trying to figure out this particular tangle of rights, duties, etc. I’ve nearly sprained my poor brain switching sides so often to try to see the situation from another viewpoint. I can see an arguement that any metastatic cancer cells have been left alone too long already. It all depends on how the question of metastasis is addressed. artemis has asserted that the cancer “almost certainly already IS metastatic”. I also find it resonable that my untrained musings on the expected behavior of the disease if left alone for over a year(I would have expected new detectable tumors based on the characterization of the disease as “rapid”) may be completely off base.

Ultimately I support the rights of people to choose non-standard, perhaps non-optimal, treatments for their health issues. An article I read said Ewing’s sarcoma has a 85-90% fatality rate within five years of diagnosis. Those are pretty bad odds. I personally probably wouldn’t take those chances, but I’m not sure I’m comfortable taking the choice away from the family. No matter what happens, the boy has some nasty odds in front of him. Chemotherapy which could stunt his growth(and he’s about to enter high school), render him sterile, and only has about a 70% chance of success in any event. That isn’t pleasant. On the other hand there is the chance that his body does have cancer foci through it and some of them may be in places where they are inoperable. If the cancer re-occurs, then the success rate for Chemo drops to something like 30%. They’ve really only got this one shot at having a good chance at ridding themselves of the specter of a recurrance. Of course, if they are right and the cancer is not metastisized, then they will have put him through chemo for nothing. God this is a nasty situation.

At any rate, I mostly got involved in this thread because I saw claims like Hamlet made about the family being “malevolent”. As a parent, I just couldn’t imagine a family doing that to their children and I decided to dig a bit deeper to figure out if the situation was more complex. Obviously it is more complex, and I don’t think claims of “malevolence” are supportable. I think denial is the most this family may be guilty of.

Enjoy,
Steven

67

Concerning the religion of the family, this was reported in the Kansas City Star.

Link (requires registration)

68

I have wondered if the family chose not to publicize being Mormons, so as to not be labeled as “religious fanatics” by the press. I do question how much their faith has played into their decisions. That is of course assuming that the link I posted above is, in fact, factually correct. They seem to be the only ones reporting it. Strange.

69

True, but faith shows itself at odd times in these situations. I had a patient today who had no trouble embracing medicine in general refuse a flu shot because she wanted to “leave it in God’s hands”.

I don’t think it makes any difference in this case–we should react the same way if this decision is based in religion or not.

To say that doctors don’t always agree is an understatement. I have rounded on the same patient with two different nephrologists on the same day, only to have one of them tell me the patient needs fluids and the other tell me he needs Lasix. Decisions for or against chemotherapy are particularly ripe for disagreement, since the treatment has such morbidity and the marginal benefit is often unknowable.

The fact that such consensus exists, and that they had to go to this Dr. Nutjob to get a dissenting opinion, says a lot.

That said, I’m not sure how I feel about overriding the parents’ decision. This case seems clear-cut, but it’s easy to think of situations for which this would be a bad precedent. Particularly, I don’t trust the state to always support good medicine over bad.

Still, maybe we should cross that bridge when we come to it, and save this kid while we can.

Dr. J

70

Oh, I agree with you, DoctorJ. I just don’t want people erroneously thinking that the LDS Church discourages medical treatment for serious illnesses, because it does not. Yes, we do rely on priesthood blessings for comfort and healing; but God helps those who help themselves, right? We can’t just ask for a blessing and a miracle, and then ignore the blessings of medical advancement we already have. This particular family may or may not be basing their decisions on what they feel God wants for them, but their decisions cannot be extrapolated to the whole of the LDS Church.

Useless trivia: Russell M. Nelson, one of the twelve Apostles of the LDS Church, participated in the first open-heart surgery. Short article.

71

The mass was removed in June of 2002. A biopsy on the removed tissue diagnosed Ewing’s Sacoma in July or August of this year. Second opinions have been asked and rendered from several other doctors. I do not know if they re-tested the removed tissue, or if they went off the test results from the first biopsy and were simply sought for a second opinion on treatment, not diagnosis. In any event, after the state became involved the family picked a new doctor and began again. A new biopsy was done, along with blood work, CT and MRI scans. This doctor said the biopsy of the removed mass indicated Ewing’s Sarcoma(in agreement with the previous assessments), noted that the testing showed no detectable metastasis, and recommended chemo.

Dr Nutjob(Dr. Stanislaw Burzinski) down in Texas has, as far as I can tell, not done any actual work on the case. His opinion seems to have been rendered based on second-hand info. As such, above and beyond his other alleged quackery, I’m not sure his position should be included because he hasn’t done the legwork necessary for a solid diagnosis or treatment recommendation.

The parents seem to believe the cancer was all removed and that their son is cancer-free at the moment. As far as detectable cancer foci go, they seem to be correct. The danger would be undetectable foci and the likelyhood of there being such. The tumor they removed June '02 was 8mm. artemis has asserted that the useful resolution of a CT scan is about .5 cm, so there may be lots of foci under .5 cm and Chemo should be used to nullify these possible foci. Worst case scenario the parents are gambling on the 10-15% survival rate for untreated Ewing’s Sarcoma, probably hoping their chances are bolstered by the removal of the first tumor and no detectable mets after over a year. Frequent re-testing could either continue to show undetectable mets(leading eventually to the probable conclusion that there were no mets) or would reveal mets which have grown. If these mets show up then surgery to remove the detectable ones and then probably chemotherapy. The risk they’re taking there is that the succes rate of chemo drops to 30% after a re-occurance. The other risk they’re taking is that a met may develop which is inoperable and then they’re almost certainly screwed.

As I said earlier, it isn’t odds I’d like to go up against, but I don’t believe forcing the issue would be right. These are human beings, and they should be allowed to make their own decisions, even if we think they are up against terrible odds. It is their gamble. I support living wills, even if the odds of a successful resuscitation are high, I support the right of people to choose not to be resusicitated. That gets stickier when the person’s decisions are being made by a third party, but absent evidence of bad faith on the part of the parents, I don’t think it is right to take the child from them. As I said earlier, the worst I see is possible denial of the seriousness of the illness. They may fully comprehend it and be willing to take the chance on the 10-15% survival rate, augmented by regular checkups and surgery as well as some non-chemo treatment. I think we’ve got to let them take that chance or we risk destroying individual liberty.

Enjoy,
Steven

72

And here is where I see a huge problem. The parents are gambling with the life of their child, not their tax rebate, not their own lives, but the life of their child. It seems pretty clear to me that these parents are not acting in the best interest of their child. Mainly because they are under the potential fatal belief that their child is cancer-free. The continued deference to parents, while a vast majority of the time is warranted, in this case, and others like it, is simply wrong.

If the parents decided to play russian roulette with their child’s life, would you support that too as “individual liberty.” There is only a 1 in 6 chance the child will die, so shouldn’t we defer to the parent’s decision?

Discussions of personal liberty and parents rights are all well and good. I agree in most cases, we should defer to the parents. But when the most likely outcome of that deference is a dead child, I tend to be against it.

73

I’d like a citation on this. I work with CT and MR scans all the time, and 1mm CT scans are quite common now.

74

Hamlet, I take very poorly to being asked to face false dilemmas. The situation is not at all analogous to the parents playing russian roulette with the child. They didn’t inject him with cancerous tissue. They didn’t create the situation and there is no evidence of the kind of malevolence on their part that would be an integral part of your hypothetical. The parents and the child were placed in this situation by factors beyond their control.

What there IS evidence of is that they place a higher value on his continued normal growth than you do and are balancing the hellish nature of a chemo regimin and the risk of sterilization or stunted growth(not to mention any social factors of a bald 13 year old just entering puberty) against a higher risk of death from untreated Ewing’s sarcoma. If you want to build an analogy then what you have to do is abstract the will of the parents out of it and make it include the very real dangers of chemotherapy.

Some evil bastard has kidnapped the child and put him in some sort of torture device. The parent’s are told they have the following situations to choose from.

Choice 1. There’s a high-powered hydraulic ram pointed at the boy’s head. 85-90% chance that he’ll die of having his skull crushed slowly and painfully.

Choice 2. There are guns pointed at his crotch, arms, legs, grazing shots across the face, etc. Some or all of them are virtually certain to go off and he’ll end up sterile, or scarred, or the bones shattered and he’ll end up stunted, or maybe he’ll flat out die. At the very least he’ll be wracked with pain for months and be subjected to the emotional trauma of a young teen just starting puberty with no hair and missing a year of school all the while being sick as a dog. Oh, and after these guns go off, theres a 30% chance the big one will go off and he’ll die horribly.

ANY choice the parents, or the state, make is most likely going to lead to a messed up child or a dead child. They don’t have the option, as someone “playing russian roulette with their child” would of simply withdrawing the threat and everything being hunky dory. As with euthanasia cases, quality of life has to be considered along with bare survival chances. I don’t see malevolence on the part of the parents, so I still trust them to have the childs best interests, in both survival and quality of life, in mind in making the decision. If they choose to take a course which will impact his long-term quality of life less at the cost of increased risk to a short-term death, I have to respect that decision, even if I would make a different one.

emarkp, I wondered about that too. I did some looking for the spatial resolution of CT and MRI scans and I found scanners capable of 5 μ meter(.000005 meter, or .0005 cm) resolution. I didn’t know if this was common, or just theoretical, and the useful resolution was much lower. I’m not qualified to speak to it, but 5 mm seemed high to me. It makes sense to me that the family, and the doctors, would have chosen the highest resolution scanning available to them.

Two questions for any medical dopers now. Firstly, the question I asked above. Foci smaller than 5mm after over a year of unchecked growth? Foci smaller than 1mm after over a year of unchecked growth?

When the patient was going from 11 to 12 and was likely growing at a good rate during that year(most pediatric cancers are even more dangerous because of the rapid rate of growth of the entire body, the cancers grow very fast in this environment)? Is this possible? Likely? I’m trying to understand how a, “extremely aggressive”, fast-growing cancer could be untreated for over a year and no detectable metastatic tumors(between 1 and 5 mm or larger) form. artemis earlier asserted that the cancer was almost certainly metastatic. Did that calculation take this data(a year since the original tumor’s removal and still no detectable mets) into account? I was never able to reconcile the idea that the cancer was almost certainly metastatic with the previous cite which mentioned the cancer was metastatic in about 1/3 of cases. Why the certainty that the cancer is metastatic? Obviously five doctors who have actually worked on the case saying chemo should be used would bolster the idea that the cancer has already gone metastatic, otherwise there wouldn’t be much reason to use chemo.

Still, I can’t help but wonder if this is a case of a phenomenon mentioned by DSeid in a GD thread a while back. We were discussing health care and why it is spiraling in cost. DSeid opined, as a pediatrician, that Doctors are under enormous pressure(mostly fear of malpractice suits) to be 110% sure of everything they do. If there is even a tiny chance that the treatment didn’t work, prescribe a second round. Total overkill. Tons of tests to confirm what previous tests said, all kinds of work and re-work to protect themselves from malpractice suits. So they prescribe tons of preventative treatments and tests upon tests to be sure they got the nasty bugger. The problem with this approach is that sometimes they run tests that are not necessary, incurring costs which didn’t need to be incurred, and causing pain and suffering while trying to absolutely, positively, overkill the damn disease into oblivion.

Chemo is a preventative treatment. It is an overkill regimin. It is widely used because the alternative, cancer, is pretty fucking awful too. During the treatment discussions for one of my relatives who came down with cancer the doctor represented the decision to use chemo versus not use chemo as the following.

Part of this is because the success rate for chemo after a re-occurance drops dramatically, so you often only have once chance for maximum survival odds, and part of it is likely due to DSeid’s theory.

Still, I trust the parents to take a wholistic view based on their intimate knowledge of the child and do what they believe is best for the child they have raised. Again, I see no malevolence on the part of the parents. No reason to believe they are not weighing the various factors and simply using a scale that places more emphasis on quality of life and makes it tip towards a path which increases the risk of death at the same time it decreases the impact to the boy’s quality of life. As mswas bravely shared with us, quality of life is an important factor and the decision will have lifelong impacts no matter how it goes.

Enjoy,
Steven

75

Don’t have a lot of time to look things up, but here are a few:

Pathologic/high-resolution CT correlation of focal lung lesions 5 mm or less in diameter: detection and identification by multidetector-row CT

HRCT in miliary lung disease.

CT evaluation for pulmonary metastases in patients with extrathoracic malignancy.

The lower limit of detectability for metastatic disease is measured in several milimeters not so much because the scans can’t achieve lower resolutions, but because nearly everybody has 1-5 mm sized “abnormalities” in their body (small granulomas, reactive lymph nodes, benign cysts, etc.). And not many people have a “baseline” pre-illness high-resolution imaging study available for comparison. PET scans and other uptake studies can sometimes be helpful in making the distinction, but PET can be fooled by benign inflammatory conditions.

On the other hand, a 0.5 cm lung nodule (or lymph nodes greater than 2 cm) is not normal in anyone - and at that size, it’s probably big enough to make biopsying it feasable to confirm that the thing’s malignant and not just an old granuloma.

Radiologists can do wonders these days - but they still have their limits. Reliably distinguishing very small tumors from benign conditions is one of them.