One of the more depressing topics that I regularly write about includes of analyses of news stories of children with cancer whose parents decided to stop science-based treatment (usually the chemotherapy) and use quackery instead. There are, of course, variations on this theme, but these stories take form that generally resembles this outline: A child is diagnosed with a highly treatable cancer with an excellent cure rate. Standard science-based treatment is begun, but the child suffers severe side effects from the chemotherapy. After an incomplete course of chemotherapy, the parents, alarmed at their child's suffering, start balking at further chemotherapy, either because the child refuses further treatment or because they do. At some point in this process the parents become aware of the claims of practitioners of this or that alternative medicine, who tell them that their child's cancer can be cured without toxic chemotherapy, and, wooed by the siren song of a promise of a cure without suffering, the parents choose that instead. At this point, physicians, alarmed at the parents' choice, call in their state's child protective services team, and a court battle ensues. Sometimes the court battle results in an order that the child complete conventional therapy, as it did with, for example, Daniel Hauser or Cassandra Callender. Sometimes it ends with a compromise in which the child and/or parents can choose an unconventional practitioner, as in the case of Abraham Cherrix. All too often the courts utterly fail to protect children with cancer, as the Canadian courts did in the cases of Makayla Sault and JJ. Not infrequently, if the court rules against the parents, the parents flee with their child to avoid treatment, as happened with Daniel Hauser, Abraham Cherrix, and Sarah Hershberger. Usually, they ultimately come back.
However they turn out, over the years of looking into them I've found that these stories tend to bear a depressing similarity and predictability. For example, if the child does well, it is always attributed to the alternative treatment, even when the child received a significant amount of conventional therapy. This attribution derives from a fundamental misunderstanding of how the treatment of cancer works in that the problem with incomplete cancer treatment is not that it can't cure the cancer but that it has less of a chance of doing so. As I've explained many times, the reason that treatment regimens for many pediatric cancers involve two years' worth of chemotherapy is that over time pediatric oncologists learned the hard way that, although the first cycle of chemotherapy (usually called induction chemotherapy) can lead to remission, without the additional cycles the chances of recurrence are very high—unacceptably so. Consequently, children who stop chemotherapy early can be in remission; they've just been put at a high risk of recurrence.
The medical neglect of an Amish girl from Ohio
This brings us to the case of Sarah Hershberger, mentioned above, who has been in the news again lately described as being "cancer-free." Before I address this new development, a brief recap of her case is in order. is a 10-year-old Amish girl living in Medina County, Ohio, who was diagnosed in 2013 with T-cell lymphoblastic lymphoma, an aggressive form of lymphoma. She underwent chemotherapy for a few weeks under the care of pediatric oncologists at Akron Children's Hospital (ACH), but then decided she didn’t want it anymore because of the side effects. Her parents, convinced that the chemotherapy was killing Sarah, instead of insisting that she undergo potentially curative therapy, which her doctors estimated to have an 85% chance of eliminating her cancer, refused to let her undergo any further therapy. Their refusal led Akron Children’s Hospital (ACH) to sue to obtain medical guardianship of the girl in order to make sure that she would undergo curative chemotherapy. The first ruling in the case in a Medina County court was for the parents. Then on appeal the 9th District Ohio Court of Appeals ordered Medina County Judge John Lohn to take another look at the case, ruling that he had failed to weigh adequately which course would best serve her interests — the decision of her parents to withhold treatment (at her request) or to appoint a limited guardian to make medical decisions, as proposed by Akron Children’s Hospital. Not surprisingly, Judge Lohn reiterated his previous ruling, finding that appointment of a guardian would interfere “with Sarah’s need and desire to be cared for by her loving parents” and stating that “the guardianship will not promote Sarah’s interests.” Ultimately, Judge Lohn’s decision was reversed on appeal to the 9th District Ohio Court of Appeals. Ultimately, a nurse named Maria Schimer was appointed Sarah's medical guardian, who weathered an incredible amount of abuse for her willingness to step up and take this role.
So for, so good, right?
Well, no, as I mentioned before, the Hershbergers fled. It's unclear where, because at the time it wasn't clear whether they had gone to Mexico or were hiding out in the Amish community in Medina County, where law enforcement officials were not exactly enthusiastic about seriously searching for her. According to David Michael, she was in Central America receiving treatments that included high dose vitamin C and B17 (the latter a.k.a. as Laetrile), oxygen therapy, detoxification methods, and IV chelation therapy, as well as a special diet.
It didn't take long for a Libertarian "health freedom"-advocating lawyer at the 1851 Center for Constitutional Law to latch on to the Hershbergers' case, and, ultimately, Schimer ended up resigning as medical guardian because she couldn't actually fulfill her role and monitor Sarah's health once the family went into hiding. After this, ACH seemed to back off. When last I noted Hershberger's case in February 2014, the libertarians at Reason.tv were, despicably, defending the medical neglect of this child as a valid exercise of parental rights and "health freedom" while revealing that they had also taken her to a local naturopath named Angela Lowther in Avon Lake, OH. After that point, even though I had Google Alerts set up for this case, I saw almost no news; that is, until now.
How is Sarah Hershberger doing now?
I was originally going to blog about this two weeks ago, when I first noted that the Maurice Thompson, Executive Director of the 1851 Center for Constitutional Law, had posted an update, Amish Daughter Healthy Despite Health Care “Experts.” However, I wanted to be able to read the actual court documents, given that Thompson's blog post was predictably and relentlessly one-sided, referring to Sarah Hershberger's case as "medical kidnapping" and calling her cancer a "mild form of cancer." One notes that childhood T-cell lymphoblastic lymphoma is not a "mild" cancer, and the only reason it has such a high cure rate is because of modern chemotherapy, complete with induction chemotherapy (which Sarah underwent), consolidation, and maintenance. Before modern chemotherapy regimens, childhood non-Hodgkin's lymphoma (which Sarah's is a form of) had a virtually 100% mortality. Worse, a child's best shot is her first shot at treatment. The prognosis for relapsed non-Hodgkin's lymphoma like the one Sarah has is quite poor, and survival requires a bone marrow transplant.
So what can we tell about what is really going on? Unfortunately, the court documents have not yet been posted at the Medina County Court site. Because the story has, two weeks later, made its way into the national news in the form of a story entitled Judge ends court-ordered guardianship of Amish girl in chemotherapy fight and the international news in the form of a Daily Mail story based on the AP story entitled Amish girl, 12, is 'cancer free' two years after her family was forced into hiding over court battle to force her to have chemotherapy, as judge drops case, I feel I can no longer wait for the court documents to make it to the website. I have to try to parse what I can now from what's in the news. For instance, quotes that Thompson included from the ruling in his blog post are clearly cherry-picked, including:
Two years later, having never undergone chemotherapy, Sarah couldn’t be healthier. Court records disclosed at yesterday’s hearing indicated the following:
- “[Sarah] exhibits no symptoms of lymphoma”
- “There are no reports or indications that Sarah cannot keep up with her work or her siblings on a daily basis.”
- “Medicine is not always right, as evidenced by Sarah’s survival in the face of ‘certainty’ she would die without treatment”
- “There is no need for Sarah’s health to be on the Court’s radar”
Elsewhere, Thompson is a lot more circumspect, even acknowledging that, just because Sarah looks healthy now doesn't mean she is cancer-free:
Maurice Thompson, the executive director for the libertarian nonprofit 1851 Center for Constitutional Law, said the girl, Sarah Hershberger, shows no signs of cancer and appears to be healthy.
“She had MRIs and bloodwork, and the judge over the last year helped facilitate at least one trip to the Cleveland Clinic. The MRIs did not show any cancer,” Thompson told The Gazette on Friday.
He said the family will continue to treat the girl with less-invasive, alternative medicine.
“Once you have it, you’re never 100 percent out of the woods, whether or not you get chemotherapy,” he said. “I know how she looks isn’t really an indication of whether she has cancer, but she’s looking very healthy.”
I couldn't help but notice one thing in Thompson's statement above. It might be nothing, or it might be indicative that all is not quite as well as he portrays. Notice how he points out that she had MRIs and bloodwork but only mentioned that the MRIs didn't show any evidence of cancer. I found the omission of whether the bloodwork showed any evidence of cancer to be curious. As I said, it might just be my skeptical antennae being hypersensitive, but one wonders. On the other hand, presumably if Sarah's bloodwork did show signs of cancer the judge likely would not have ruled the way he did.
It's also interesting to note the contrast between what Thompson wrote on his blog and what he said to an AP reporter. For instance, on his blog he said, "Two years later, having never undergone chemotherapy, Sarah couldn’t be healthier," and castigated experts who "have no skin in the game" and "arrogantly pontificate without fear of consequences" while being "in fact frequently wrong." I don't know about "frequently," but, in the case of a child with a treatable cancer, if the oncologists are telling me that she has a high chance of dying without further treatment I tend to go with the oncologists. Indeed, there's a pretty high probability now that Sarah's cancer will not relapse, as most relapses for T-cell lymphoblastic lymphomas occur within two years of completion of treatment. Knowing that, as I've said many times before, it would be a great thing if Sarah Hershberger does ultimately survive despite grossly incomplete treatment, because I don't want to see a child who might be saved die unnecessarily of cancer, ever. If the price of Hershberger's survival is a cavalcade of quacks exulting about how the oncologists were wrong and natural therapies cured her, so be it.
The point is this. If Sarah survives without a relapse, I will rejoice. To me, it will be a fantastic thing because it will mean that she is one of the lucky ones who didn't relapse after her induction therapy, even though she never underwent consolidation or maintenance therapy. If she survives without a relapse, it will have been due far more to the conventional induction chemotherapy she received (plus a lot of luck) than to any of the quackery to which her family subjected her. In essence, she will have survived in spite of her parents, in spite of the quackery, and in spite of the "health freedom" machinations of Maurice Thompson. Remember, the additional chemotherapy after induction chemotherapy decreases the chance of tumor recurrence, and as far as I've been able to glean Hershberger responded very well to her induction phase. I realize that this is a message I have to repeat time and time again when I encounter these cases, that it was the science-based treatment—not the quackery—that cured the patient, but it is nonetheless true. Unfortunately, it is a difficult concept to explain, while it is very easy for quacks to make such cases seem to be excellent examples validating their claims that it is better to treat cancer with "natural" therapies.
Fortunately, there is still some hope that the court will not completely wash its hands of the case, as the judge cautioned the parents:
However, Dunn cautioned her parents that she is not fully recovered and warned that they still have a duty to provide her care under Ohio law.
'Her parents are not free to act entirely as they may choose,' the judge said.
On the other hand, who's going to report the Hershbergers if they endanger Sarah's life again? Probably no one.
What the Hershberger story is really about
I started this post by listing the general form stories like that of Sarah Hershberger take, but there is one more aspect of these stories, perhaps the most important aspect of all, and that is what these conflicts are really about. At their heart, they are less about quackery versus science-based medicine, although that is an important aspect of them, than they are about two things. The first is so-called "health freedom," which I like to define as the freedom of quacks to ply their quackery and patients to choose quackery. Of course, competent adults already have the freedom to choose quackery if they so desire—or no treatment at all—for a life-threatening disease. No government, at least not in the US, is going to force a competent adult to undergo chemotherapy for a treatable cancer. The government might require practitioners to be licensed, as state governments do, or that health care claims be backed by evidence, as the federal government through the FTC does, or that treatments used show evidence of efficacy and safety, as the FDA does, but it won't require a competent adult to undergo unwanted treatment.
That's where the second issue comes in, and that issue is a child's right to proper medical care. Traditionally, parents, as guardians of their children, are granted great latitude in how they choose medical care for their children. Indeed, there is a widespread attitude that the parents' power to determine what is best for their children is pretty close to absolute, which is why stories like Sarah Hershberger's rile up not just the pro-quackery community but large swaths of people who seem to conflate their own right to choose whatever medical care they want for themselves with an absolute right to decide medical care for their children. We see this conflict when children die because parents choose prayer over medicine, for example, the case of Madeline Neumann, an 11-year-old girl whose parents let her die of diabetic ketoacidosis because they believed in prayer instead of medicine. Neumann's case was unusual in that the parents were actually convicted.
To get an idea of how much deference courts grant to parental "rights," consider the case of Catherine and Herbert Schaible. This is a couple who belong to a church that rejects modern medicine in favor of prayer. In 2009, they were convicted of involuntary manslaughter in the death of their son 2-year-old son Kent, who developed an upper respiratory infection that later worsened to become severe pneumonia. The Schaibles never took him to a doctor as he got sicker and sicker. The court sentenced the Schaibles to ten years' probation with a promise that they would take their children to a doctor when they became ill. To say that this did not work out well is the understatement of the decade. In 2013, their 7-month-old son Brandon died under nearly exactly the same circumstances. He developed un upper respiratory infection that was complicated with pneumonia and ultimately died of bacterial pneumonia and dehydration. Yes, because of deference to parental rights, a second child died unnecessarily in the very same family.
Similarly, in Sarah Hershberger's case, "parental rights" ended up trumping the child's right to effective medical care. Indeed, Maurice Thompson is quite explicit in his desire to strip the courts of pretty much all power to intervene to prevent medical neglect, as he stated in his blog post two weeks ago, referring to the court's action as "medical kidnapping":
The Ohio General Assembly – – members of which laud health care freedom, family values, and parental choice while campaigning for office – – cannot justify maintenance of Ohio’s wide-open and highly subjective “best interests of the child” test. This test allows county judges to overrule health care, educational, and other important decisions of suitable Ohio parents. Once overruled, children can be immediately seized from their homes.
In the wake of Sarah’s case, this concept came to be known as “medical kidnapping.”
The Hershberger’s case is a lesson for all of us: we’re not as smart as we think we are. Knowledge is decentralized, and when in doubt, those closest to the situation, families (and not government experts with special designations next to their names) must make life-altering decisions.
Further, Sarah’s good health bolsters the case against forced health care that we supposedly cannot live without (literally, in this case).
It is now time for Ohio legislators to protect Ohio families from wayward judges. This can be done by reforming Ohio’s unconstitutional “best interests of the child” test.
Note that what Thompson really appears to mean when he refers to "reforming" Ohio's "best interests of the child" test is its elimination, given his extreme hostility towards it as an unacceptable infringement on the parents' freedom. This is the sort of rhetoric frequently used by antivaccinationists as well. For instance, Rand Paul made no bones about it in February. Irritated by questions about his opposition to school vaccine mandates in the wake of the Disneyland measles outbreak in January, Paul said bluntly and rather petulantly, “The state doesn’t own the children. Parents own the children, and it is an issue of freedom." We hear the same rhetoric from "Dr. Bob" Sears, who has frequently equated freedom from vaccines with just plain "freedom," period. He even went so far as to liken school vaccine mandates to fascism, complete with comparisons to the Holocaust.
At its heart, the Hershberger case is yet another example of how society seems to approve of a view that children are, in essence, their parents' property more than they are autonomous beings who have their own rights beyond those of their parents. Whenever society tries to intervene to prevent parents, who are nearly always well-meaning and think they are doing what is best for their children, from harming their children through medical neglect, as parents who refuse effective cancer treatment for their children do, there is always strong opposition. I realize that it's a complicated question to determine when and under what circumstances it is appropriate for the state to intervene to protect a child from the bad medical decisions by her parents, but until this attitude that children are their parents' property changes, there will be more Sarah Hershbergers and Brandon Schaibles.
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Well said sir, well said indeed.
I also find this refresher particularly timely.
I have a dear friend coworker recently diagnosed with cancer, still determining type and if it ha sspread, so this is raw. He is prone to woo.
His family practice cupping, to "let the air out of your spine". So I very cautiously ask questions intended to make him think.
And even rawer, my semi-fundamentalist in laws. My niece is on her way to a CAT scan and oncology visit for a spot on her lung. I could easily see their church trying to guide her care.
On that front, I will be obnoxious if needed.
Again, this refresher is helpful.
Thanks
If it turns out well it's due to alt med. If it turns out bad it's due to SBM. It's great that Sarah is doing good, seems like recently there has only been negative outcomes.
This is a good observation of how many of these stories (which are thankfully rare) proceed- I happened upon an article from last year about "Kid Against Chemo" before he and his mother decided to abandon science-based treatment and try a cornucopia of quackery to treat his stage 4 hodgkins kymphoma (which he says is in remission)
They were already looking at alternative treatments as he started chemotherapy that gave him a 75% chance of success:
It appears that once they started "doing their research" (as so many a woonatic claims to be doing), there was no stopping the descent into the alternative medicine cult.
Research my Aunt Fanny. Reading anecdotal evidence on the Internet =/= research, but you can't tell the woo-prone that.
shay@5: "Research" is whatever gives them the warm fuzzies inside.
Orac -
You've got a paragraph that begins,
"It’s also interesting to note the contrast between what Thompson wrote on his blog and what he said to an AP reporter."
However, I don't think you completed that thought, as there is no citation of the statements to the reporter following your examination of an example statement on the blog. Can you flesh that out?
Thanks.
shay@5: Research is a wonderful thing, but to use it properly you need to have some way of determining the reliability of your sources. The anecdotes are out there. (Let's leave aside for the moment the issue that "data" is not the plural of "anecdote".) How do we know that the anecdotes are actually true? That's one of the benefits of peer review, at least when it's done properly: the reviewers are saying that the study is plausible and free of obvious mistakes. The system is far from perfect (it isn't designed to detect research fraud, and Orac has posted about several examples where peer review has been subverted), but it's better than relying on anecdotes. The problem is that many laypeople don't know the difference, and assign the latter as much or more credibility than the former.
And then there are the people who already know where they stand on the question, and are searching for viewpoints and evidence consistent with that stand. That's the sort of research we see from many of the more prominent woo-pushers, as well as too many so-called "journalists" of the "Opinions Differ Regarding Shape of Earth" school.
We just don't like to look at the odds, do we?
A rational mind looks at 1,000 events and goes with the events that are most common. An irrationally-thinking mind goes with the most rare events because, hey, we're all special. This is why we play the lottery.
It's sad, however, that parents decide to play that lottery with a child. Some people just want to watch the world burn, and sometimes -- for two or three seconds -- I feel like letting them.
Until I realized that Libertarian is just an alternative spelling of amoral a$$hole, I was confused by how many of these "parents own the children" Libertarians are also forced birthers. Apparently the child only becomes the property of the parents after birth. Prior to that the fetus and pregnant women are the property of the state.
MA@10: As they will be happy to tell you, most self-described libertarians firmly believe that "all men are created equal" and that they have "certain unalienable rights." Women and children, not so much. Father always knows best, and sluts must be punished for being sluts. It's a position I expect their heroin Ayn Rand would find appalling--she was about as anti-religious as you could be and still be a well-respected public figure in the US.
How's that for an inspired typo: I'd intended "heroin" to be "heroine", of course, but the former fits just as well.
Eric Lund @14
Silly me - I misunderstood property rights with the right of property to have bodily autonomy.
In the case of Ayn Rand, if you tell millionaires and "temporarily embarrassed millionaires"* what they want to hear, the American Public will cut you a lot of slack in the religion department. The Rethuglican's have no qualms about about kissing the asses of the openly atheist Koch Brothers after all.
HT to John Steinbeck for the term.
A million bucks is not what it used to be.
It was Mexico – I (still) presume the the border zone.
The probate division, at least, doesn't post documents anyway:
h[]tp://pjwebaccess.medinaco.org/view_case.php?case_id=%9F%A1%CB%82%3B%A8e%E5pl%CF%1DpC6%1Ev%CD%18HI%95%ADw
^ Oh, and I have to remember to check the tax returns for Augie's hastily assembled nonprofit, which took in more than $20,000 in donations for its Sarah fund.
Thanks, Orac. You reminded me of the case of my father, who, in around 1918, nearly lost a leg due to the neglect of his mother, a member of the First Church of Christ, Scientist. A neighbor finally convinced her to take him to the hospital for his broken leg, rather than to expect prayer to heal him. When she finally did, the doctors told him that a few more days and the gangrene would have required his leg to be amputated. If there were any benefits to her neglect, it was that my father was passed up for the War, while the time he spent in a wheel chair was devoted to drawing, which launched a successful career in art.
Here's a case where the religious conviction of two parents resulted in legal convictions for both.
http://www.thedailybeast.com/articles/2015/10/14/church-s-faith-healing…
However, as the article indicates, this might not be the outcome in every U.S. state.
I find it mind boggling that in this day and a parent can, based on their religious belief, condemn their child to death and then walk away with no legal consequence.
Well, what about the kids that do go through all the treatments and the cancer comes back (like it often does). Then they go through even more horrible treatments, get the bone marrow transplant, have graft vs host disease and die anyways of a horrible death that caused months, even years of unconscionable suffering. Has the author ever witnessed this? It's awful! And let me tell you, a lot of those parents would have whether not put their kids through that kind of pain. I believe the parents on media trial here are trying to act in the best interest of their child. Maybe not the "cure through prayer" folks but cancer treatments are a very different thing. Also, no mention here about how often the doctors make mistakes and the patent dies anyways. If you think that's a rare instance, you are wrong. It happens every single day and is usually covered up. These parents are not killing their kids. Cancer is. Nature is. Unless you have seen first hand how awful the 'cure' is, maybe it's not possible for you to see the other side here. The outcome is not predictable. We can do everything the doctors and drug companies are pushing down our throats and still loose. How can we chastise a parent for standing up for their child's desires and needs to the best of their ability? Because they might be wrong? Guess what? The doctors, the hospitals, the pharmacies and the media is wrong All the time. It's a parents job to sort through all the BS and propaganda and decide if they force their child, against his will, to undergo unimaginable suffering that may or may not work.
EL@11 "heroin Ayn Rand" - I think you mean heroine.
#19
I think you should look up who Orac is in real life. I am sure has seen far more of the horrors that cancer patients can and do face then you can even imagine.
Your comments are ill spoken. Again find out who you are speaking about before commenting from your nether regions.
They also have eighth-grade educations.
Unless you have seen first hand how awful the ‘cure’ is, maybe it’s not possible for you to see the other side here.
You mean the cure that allowed my brother Steve to live to adulthood, marry, have children, etc...you mean that cure? I think he'd tell you it was worth it, even if he was only a child at the time.
Dori, read this:
http://scienceblogs.com/insolence/2006/08/22/the-orange-man-1/
... and this:
http://scienceblogs.com/insolence/2014/10/30/r-i-p-mckenzie-lowe-stanis…
Then go to the library and check out the book The Emperor of All Maladies. Read it.
#19 you state:
Also, no mention here about how often the doctors make mistakes and the patent dies anyways. If you think that’s a rare instance, you are wrong. It happens every single day and is usually covered up.
Are there mistakes made in medicine everyday? The answer is of course yes and don't believe anyone here would deny that. However, where you are absolutely wrong is stating the mistakes are covered up.
As the safety officer for a health center with a patient list of over 8,000 I can tell you no mistake made by a provider is covered up. Do we publish exactly what happened to public? No we do not if for no other reason a law called HIPPA. We do have incident reviews, we have to send information to government agencies that have oversight.
I don't know about your state but in mine you can go to the Dept. of Health and find information concerning a provider or medical facility. The state hospital assoc. provides information in this area also.
Yes, I mean the same "cure" that killed my brother.
I work in a hospital talking to families of someone who is dying or just died everyday. I'm not professing to know the solution because I don't. I have just seen both sides of it and know it is not black and white. I've watched my brother die after the chemo and radiation has taken everything from him down to his last breath. But you know what? The statistics will not show that he died of cancer. The cancer was finally gone. It was the effects of chemo and a bone marrow transplant rejection that killed him. What do you suspect they list that death as statistically? It's not cancer. Remember that when you are reading your statistics.
I talked with these families who are forced to make decisions first hand. I have spoken with mothers who said enough is enough with this chemo and called hospice. I have sat and cried with parents that did everything the doctors told them and their kid still died. I've consoled them through their guilt ridden sobs for making their kids go through all that suffering. My point has little to do with the treatment. My point is that the parents are not at fault for the death. Cancer is. Cancer is the bad guy here. If you are going to blame the parents then we also have to say they are are fault if they make their kid go through a horrible regimen and they end up dying because they no longer have the immune system to fight the common illnesses like the Epstein Barr Virus, CMV or even pneumonia. No, you can not just give more antibiotic or antiviral drugs. It is an awful, horrible death.... So is cancer!
In this article it says the parents were "convinced that the chemo was killing Sarah" So they perceived it as a dangerous threat. You can shoot a man dead if he was doing something you "perceive as life threatening" to you or your family. Well, what if you were wrong? The law says it's about whether or not you perceive you or your families life to be in danger. Does the court ask about the education level of that parent who thought they were in danger? No. People without an education are permitted to have children and make decisions on their up bringing. Being poor or of little education is not a forfeiture of your right to protect your family. There was a perceived threat. That's how this family felt. Maybe they were wrong. Are they any more wrong than the mother I spoke to years ago who's child died after getting a tonsillectomy? Are they any more wrong then a family who decides to go to hospice instead of getting treatment? This happens All the time and I don't see anyone blaming those parents for not fighting with "conventional" medicines because there is a chance it might work. If this is going to be a medical ethics debate then I'm not talking about whether one treatment works over another. There are cases where alternative medicine Does cure cancer. It happens. Or it might not. Chemo May cure Cancer, It definitely will make you sick, it might render your body defenseless which could cause death, or it may not cure the cancer at all. Either way, the ethical question is whether or not these parents have a right to stand up for their child when they perceive that someone or something is putting her life in danger?
Chris: I loved the Orange man article. Thanks.
I work at a hospital too. I'm not even talking about some big obvious murderous like scandle. I mean the small things. Like, giving too much Coumadin that resulted in a massive head bleed. Like not fixing the K+ and the heart goes into dysrhythmias. Like under ventilating the lungs leading the atelectasis and contributing pneumonia that kills someone. Like performing a small procedure that creates an emboli that ultimately travels to the lungs. Like inadequate ventilation that causes an anoxic brain injury. You are right, there isn't some big scandal to hide anything, per say. But, the deaths will be considered of natural causes. And so they are. And I'm sure your review reflects that. But, if the doctor didn't do (fill in the blank) then the patent would not have died. This does indeed happen All the time. The chart would say "anoxic injury", not "anoxic injury because of under ventilation". Okay, fine, that's a part of healthcare. We have all come to accept it, now haven't we? I personally will always excersize my autonomy in making healthcare decisions for me and my family, even if it is against the doctors opinion. That is my role as a parent. Which is the whole point here. The autonomy to make medical decisions because you believe the treatment is dangerous for your child. Let's face it.... Sometimes the treatments 'are' dangerous.
Dori, the whole point here is that you missed the whole point here.
"I work in a hospital talking to families of someone who is dying or just died everyday. I’m not professing to know the solution because I don’t."
Yet in your followup post you seem to know exactly what killed a slew of patients.
Apparently, your solution is to disregard medical advice (even when there is a very high chance of a cure, as in the case being discussed here) in favor of making a fatally wrong choice for one's child, all for the sake of "autonomy" (your own).
Dori: "Chris: I loved the Orange man article. Thanks."
You are welcome. Have you clicked on the blue letters of the author's name? He is not just random dude blogging from a basement.
Dori, treatment for cancer has risks. These are things that need to be weighed and compared to the risks of the cancer. Plus cancer is not just one disease, it is thousands... each with their own risks, treatments and ways to prevent (not smoking, getting hepB and HPV vaccines, genetics, etc).
When a person is young, sometimes that risk and discomfort are worth it. The "Orange Man" would have fared better if he had had minor surgery early on instead frittering away valuable time with worthless treatments. Shay's brother was saved by getting his cancer treated.
On the other hand, my hubby's 87 year old uncle has lung cancer. He has been informed that it is incurable, so instead of painful treatments Health Canada will provide palliative care (and he still smokes). My step-mother also died of lung cancer when she was in her early 80s about two to three weeks after being diagnosed. She also declined treatment, only getting hospice at home.
It is all about relative risk. While chemo therapy is terrible, and sometimes does not work, dying from cancer is not easy.
Dori: "Either way, the ethical question is whether or not these parents have a right to stand up for their child when they perceive that someone or something is putting her life in danger? "
Except how do they know that the "alternative" treatments are not worse? What about the ethics of someone telling them they have a better way, but they really don't. They are trying to scam the parents to get business and in the end the child does not receive actual medical help. This was the point of the second blog suggestion.
And as a parent of a disabled child, this something I have dealt with time and time again. Ten years ago I left a listserv for my son's disability because too many of the "parents" turned out to be employees of quacks trying to drum up business for chelation, vitamin therapy, homeopathic head massages, etc. etc.
Narad
But have they been to Georgia on a fast train?
okay, okay.... My two separate responses to two different posts have clearly thrown you off Bacon. My apologies.
I see that most of you believe these parents are horrible, rotten people. Yes, let's rip this little girl from her their arms right away.
So there is no room here for compassion for what these parents were going through? Forgive me for believing that they were not acting out of malicious intent, but for what they believe to be in her best interest.
Chris, Yes, I did check out the author. I think he is pretty great but I still don't agree with throwing this family under the bus for opposing traditional medicine. Then saying the parents are putting her in danger. No, they did not put her in danger, cancer did. Maybe they did not 'know' if the alternative would be better or worse. I guess alternative medicine is just not known for the same toxic effects as chemo. Not that it couldn't be. I too have a chronically sick kid at home. I too know the horrors of chemo and cancer as several members of my family has gone through it as well.
All I'm saying is I can't blame someone for not wanting it or not wanting it for their child; for fearing it and for believing it to cause harm. Who could blame a mother for wanting to try a less invasive procedure? At least try. I would support either decision but I don't think that chastising these parents to such an extreme is inappropriate just because they didn't want to follow convention. This little girl is doing just fine for now, right? She is getting her check ups? So where is the harm in allowing for them to seek other therapies and another opinion? Because everybody doesn't value said opinion? If the alternatives fail isn't she right there following up so those parents could concede and say they at least tried before putting her through all the rigors of chemotherapy? Do you really think the parents would have taken her elsewhere if they thought it wouldn't help her? Well, it appears to have cured her... For now. I pray she gets to be an old lady.
Could you please cite the relevant statutes?
^ Although I do appreciate the extension of the pseudolegalese:
You did kind of (*koff*) screw up the analogy, though, unless you were suggesting that the Hershbergers would have been let off for fatally shooting the revenooers threat-bearing people they were confronted with, such as the guardian ad litem.
Dori: "I guess alternative medicine is just not known for the same toxic effects as chemo."
How well known is it for its effectiveness? And how is the process of untreated cancer not toxic?
Chris,
Now also available as a series of documentary films, which look excellent from what I have seen of the first episode. In other medical filmography news, a new series of 'The Knick' has just premiered. Marvelous, if you like that sort of thing.
"I see that most of you believe these parents are horrible, rotten people. Yes, let’s rip this little girl from her their arms right away"
Careful, that strawman could give you a nasty skin rash.
"I guess alternative medicine is just not known for the same toxic effects as chemo."
It's also not known for having an 85% rate of success in curing T-cell lymphblastic lymphoma. Or even 1%.
"Well, (alt med) appears to have cured her… For now."
Nah, couldn't have been the initial round of evidence-based treatment that has so far held her cancer at bay. Must be the woo.
Others have made the same point already, Dori, but lets try another analogy...
A family is hiking in a faraway place and their daughter falls and breaks her leg. By the time they reach the first two houses they've seen, the foot has turned gangrenous.
One man says that there's a hospital in a nearby island, but his boat is so small it will be a very bumpy and uncomfortable ride but the hospital will most likely be able to treat her. (It must be a very dangerous hike because) the man has kept adequate logs and can say with confidence that around 85% do indeed get better.
The neighbor insists the family ought to just sit in the shade, drink home-made lemonade and enjoy themselves, and that will cure the gangrene better than the hospital would. He has no logs to provide but insists that everyone he has served lemonade to have gotten better, or they didn't drink it right.
Would you still regard the two options as equivalent as far as the parents were concerned?
Forgive me for believing that they were not acting out of malicious intent, but for what they believe to be in her best interest.
Of course they believe it's in her best interest. The fact remains that they are wrong and their decision will probably kill their daughter.
This is what you seem not to be able to grasp.
Dori # 27
Hospitals are very dangerous places, where no sane people should even think to go.
Unfortunately, even sane people become ill, and search for a cure. That often means Hospital.
Being sane people, they know the dangers, even if not in the details you reported. Why then they let physicians treat them? Because the total risk they run is far lower than the benefit they will get. At least if they are treated with rationally evaluated methods.
It seems you are using the most powerful arm in medical panoply: the retrospectoscope. But only directed toward a few selected fields.
Krebiozen: "In other medical filmography news, a new series of ‘The Knick’ has just premiered."
I have been spending the day doing a marathon watch of the first season of the program.
@ Chris:
I've seen a several episodes over the past few months :
I so far have mixed feelings about the drama/ story line although I assume that the medical procedures/ information from that time are well depicted. Costumes are great and Clive Owen isn't ever a core to watch.
isn't ever a CHORE to watch
I loved the final scene in the first season with the miracle cure for cocaine addiction being revealed....
There are echoes of William Halsted (of radical mastectomy fame) and his various substance addictions in 'The Knick' - I just finally got around to reading 'The Emperor of All Maladies' that mentions them.
They made some odd choices of incidental music I thought, almost 70s synth at times. Weird.
I love The Knick. I just saw the second season premier the other night, and it looks as though the second season will be as good or better than the first.
Remember this:
http://scienceblogs.com/insolence/2014/09/22/medicine-of-the-past-versu…
:-)
Basically, the medical and surgical discoveries of the time are well-depicted, but creative license was clearly taken with respect to the exact times of those discoveries. A lot of what is portrayed was not necessarily discovered in 1900-1901 but rather within a 20 year window surrounding the year 1900. For instance, as I said, I don't quite buy surgeons still operating bare-handed in 1901, given that Halsted had introduced gloves over a decade earlier and a large study showing much lower rates of infection in hernia surgeries done wearing gloves compared to done without gloves had been published four or five years before.
I might have to give The Knick a try; there's only so many times you can rewatch Star Trek TNG, I suppose.
Regarding doctors and substance abuse, there's a short story in Bulgakov's A Country Doctor's Notebook, titled "Morphine," that's worth a read. It's pretty quick, too. (Like Chekhov, Bulgakov was trained as a doctor; unlike Chekhov, though, he didn't end up making a career of it.)
Orac: "I just saw the second season premier the other night, and it looks as though the second season will be as good or better than the first."
I was so intent on getting through the DVD set from from the library, I totally missed that our TV provider was offering Cinemax for free this weekend. I found out after the premier, and now they are only repeating the first season during the rest of the weekend.
I guess I'll wait for the season 2 DVD set, and then put it on hold from the library. One advantage to the DVD is that I can speed it up with sound during the surgeries. It lessons the blood.
I was halfway through the Season 1 finale when dear hubby came into the den and gave my dinner. I knew better than to eat and watch that show at the same time. So I paused, made the window smaller and browsed a bit.
I was very happy when I guessed right that the miracle drug from Bayer was heroin.
Biggest disappointment was the Typhoid Mary part did not include Dr. Baker sitting on Mallon in the police van. You all should read Fighting for Life, her autobiography that has been recently reprinted.
"I found out after the premier, and now they are only repeating the first season during the rest of the weekend."
Oops, I was wrong. I think I can get it on my DVR.
Bulgakov was trained as a doctor
Ah, so "Heart of a Dog" was based on actual events?
With reviews like that, I'd better try to see more of the show in order ( I just chanced upon it a few times randomly). I am currently watching ( parts) of The Leftovers - which is quite another story.which is about to ( probably) go religious.
Oy.
Perhaps that is why he switched to literature.
I believe there are many treatment options and it is the job of the doctors to inform patients of ALL therapies, including natural so the patient and their family can make the choice best for them. I have several family members who have dealt with cancer and chemo. My mom combined natural and traditional and she has been cancer free for years. My dad refused any natural and died in a short amount of time and was never really healthy or happy after his treatments. My mom sad she would never do chemo again. The only reason she did was because she was dad's caregiver when they found hers and couldn't go as far as she needed to in order to do all natural. I appreciate the way they do medicine in Singapore. They determine the best route, treat with "scientfic meds" where necessary and then allow the body to heal itself, amping up nutrition and whatever course they decide together. Natural medicine IS scientific. The meds made by pharma are constituents of plants and roots but they are isolated so you aren't even getting the benefit of the entire plant. Not all who believe in natural medicine are religious freaks, some have no religious belief. Most of the comments on here are so one-sided. I am happy to find more and more integrative medical practices and I hope more will be formed. For people with so much intelligence, you sound closed-minded and arrogant. Treat your patients like intelligent people who can make intelligent decisions based on all the facts and stop trying to play God.
The science-based medicine is what cured her, then.
I'm sorry to hear that, but his refusing "any natural" almost certainly had nothing to do with his death.
Also, it makes a big difference what specific cancers and at what stages your parents were diagnosed with to evaluate what happened.
My patients come to me for my expertise and my best science-based recommendation. Also, blogging is a different situation; I'm never sarcastic or disparaging one on one with a patient, but blog posts are for a mass audience. I write what I think and try to make it entertaining as well as educational.
You all need to watch The Truth about Cancer.
The author of this article is either incredibly unqualified and ignorant to write about this, or he is deliberately twisting the facts, in which case there is a special place in hell for him.
This article is full of grammar and spelling errors, and also full of crap.
Anna: "This article is full of grammar and spelling errors, and also full of crap."
Brilliant argument! You countered all of the "crap" with an absolutely full of data and evidence in great homeopathic quantities.
mia smith, put the words "truth about cancer" in the handy dandy search box at top. Also, click on the author's name at the top of the article (the blue letters). Then come back and explain how he is unqualified compared to Ty Bollinger.
Jen, your evidence that extracts of a whole plant from which active ingredients in purified form are isolated are safer/more effective as treatments than the use of the pruified active ingredient itself would be...what, exactly?
I mean, you do have some--right?
For example, can you provide any evidence that extracts of the bark of Pacific yew trees is more effective than paclitaxol as a treatment for solid cancers (ovarian, breast, bladder, lung, prostate, etc.)?
I'm curious where all these "grammar and spelling errors" are, myself. I'm sure it's possible that there might be a typo or two in a 2,000+ world post, but where are the grammar errors? :-)
I am sorry but I am always disturbed when doctors stop listening to the family and start saying only one way is a cure all especcially when radiation has been known to kill both good cells and cancer cells. The parents usually are fighting for thier child to live not just to avoid pain that's why they looked into Holistic Medicine. I would trust a parent who loved thier child before I would trust Big Pharma. I hate seeing how if you don't want radiation for your child you must be endangering them. NOT TRUE People can live without radiation and be cancer free. The mistake that many people think is that the family would be saying she will always stay cancer free not necessarilly but now if she relapses do you think they are going to take her to an American hospital especcially if she is under 18 still? No they are going to go back to a foreign country and try the holistic medicine there. By the hospital doing what they did they ensured that they wouldn't have her as a patient again. Great move men and women of medicine
From Dr. Moss book questioning chemotherapy. Someone who really knows what he is talking about. Dr. Braverman says that there is no solid tumor incurable in 1976 that is curable today. Dr. Moss confirms this and claims that the greatest breakthrough in the objective study of chemotherapy came from a biostatistician at the University of Heidelberg, Dr. Ulrich Abel. His critique focused on whether chemotherapy effectively prolonged survival in advanced epithelial cancer. His answer was that it is not effective. He summarized and extended his findings and concluded that chemotherapy overall is ineffective. A recent search turned up exactly zero reviews of his work in American journals, even though it was published in 1990. The belief is that this is not because his work was unimportant -- but because it's irrefutable.
So , what was the alternative medicine that restored Sarah Hershberger to renewed health...Where did she go to be cured.
Well, it's a good thing that Sarah doesn't have a solid tumor, then, isn't it?
Of course, this is a silly argument. Solid tumors are treated by surgery primarily; so of course tumors that could be removed in 1976 can also be removed today. We're better at it; we can do it with less surgical morbidity and mortality, and we now have chemotherapy and radiation therapy to reduce the chances of recurrence. Imagine that.
Silly man. I've discussed Ulrich Abel's work before, and it's—shall we say?—underwhelming. For instance, it was published, just in a lower tier journal, contrary to claims by cancer quacks that it was published in The Lancet:
http://scienceblogs.com/insolence/2010/02/19/andreas-moritz-legal-intim…
http://scienceblogs.com/insolence/2011/09/16/two-percent-gambit-chemoth…
Oh, and chemotherapy does work:
http://scienceblogs.com/insolence/2011/12/07/so-chemotherapy-does-work-…
http://scienceblogs.com/insolence/2013/10/30/so-chemotherapy-does-work-…
Seriously. You're clearly a newbie. The arguments you're regurgitating have been discussed in detail many times before here. They are no more convincing now than they were the first time I encountered them.
Nice bit of conspiracy mongering about Ulrich Abel, though. That "they" kept it from being indexed on PubMed is a new twist that I hadn't heard before. It made me chuckle.
Hmmm. Given the newbie cancer quackery apologists who've started to infest this thread, I have to wonder what alt med website or discussion board someone's posted a link to this post to. :-)
"Jen, your evidence that extracts of a whole plant from which active ingredients in purified form are isolated are safer/more effective as treatments than the use of the (purified) active ingredient itself would be…what, exactly?"
Well gosh, everyone knows that everything in the whole herb works synergistically to promote optimal healing, because Mother Nature knows best and God put herbs on the Earth to benefit mankind. As an example, Mother Hutton's original herbal formula for heart stimulation had over 20 things in it, and after that Dr. Withering pulled out digitalis it wasn't any good for the heart and nobody was improved by it. Well, maybe not, but the exception proves the rule and you can't expect tampering by man to improve things and those Pharma studies aren't reliable to disprove what we already know which is that the whole plant is best.
Hope that helps.
concerning Dr Moss and Dr Braverman
Oy.
So, exactly what interests do pharmaceutical companies have in promoting radiation treatments?
I should add-
goo-le Quackwatch w/ Ralph Moss and Eric Braverman
( separate articles)
Eric: "From Dr. Moss book questioning chemotherapy."
His PhD is in "Classics", he is not a medical doctor. Do you even try to check out the qualifications of those who you take medical advice from? Or is it all Greek to you?
I am sorry but I am always disturbed when doctors stop listening to the family
I'm always disturbed when the family stops listening to doctors.
All very understandable. Very well researched and thoroughly articulated on this matter. Clearly, science is the winner here and people are want to defy real science.
Stil ... what about all those children who don't have access to medical care?
We just let them die, because they cannot afford treatment.
Where are the advocates for them?
Congrats!
Agreed, but will you still defend the rights of a child if one or both of his parents has decided to abort it?
Abort a child? It appears that English is not your native language.
Oh STFU you insufferable statist moron. The one who said it was medical kidnapping was the JUDGE you imbecile. A judge looked at all this and deemed her to appear healthy and they did follow up with an oncology clinic which has so far found no reason for the alarm they gave initially, and yes you're moronically casting supposition. You're a worthless big pharma hack who is mindless on this issue and thinks all that is knowable comes from someone with an academic title behind their name. You're full of it.
I do so love the ignorant bleating of someone who clearly has only read the propaganda. Let's put it this way. The judge never said it was medical kidnapping. If you can show me to be wrong, please do, but I've read the various court transcripts. Here's a hint: The judge never said anything like that. Basically, the judge went along with Akron Children's Hospital in appointing a guardian, but when the Hershbergers fled the woman appointed as medical guardian resigned because she said she couldn't carry out the court order to monitor Sarah. Eventually, ACH basically gave up.
Seriously. You do not know what you are talking about.
Im sorry but this is a perfect example of nonsensical gibberish. How can you even comment on this issue given that your view on the girl's condition is purely speculative? You state that people who don't complete the full course of their chemo regimen are subject to a high chance of reoccurrence of disease. Well, this may come as a bit of a shock to you but reoccurrence is also very high in individuals who do complete their full course of chemotherapy. Perhaps this can be attribute to the fact that chemotherapy is in itself highly carcinogenic. If you truly think that pharmaceutical companies are providing their chemotherapies to us out of the goodness of their hearts, then with all due respect you need to pull your head out of your rear end. This is a multitrillion dollar industry so of course profits are a driving factor. Furthermore, if you read through mainstream medical journals you will see that the polio vaccine was (& perhaps in some cases still is) infected with the highly carcinogenic SV40 virus because it contains cells harvested from monkey's kidneys. These medical journals also admit that the infection has been responsible for the induction of many cancers worldwide, particularly lymphomas & childhood brain tumours. In addition, it is still being found in tumour tissue of deceased cancer patients. Given these types of events, it would be naive for anyone to place 100% of their trust in the safety & efficacy of pharmaceutical treatments in general. The reality is that as it stands, chemotherapy is a primitive treatment for cancer because it itself is highly carcinogenic & to date no safe & effective treatments exist. I have personally known many cancer patients who have undergone their full courses of chemo regimens & unfortunately most of them ended up dying of their diseases in the months & years following their treatments. Certain medical treatments with severe & potentially lethal side effects should never be forced on anyone. No parent wants their child to die & they should in most cases be given the freedom to pursue whichever therapy they deem to be the best for their child. If this girl's cancer is truly cured, then why can't people be happy for her & her family instead of trying to take digs & poke holes in the story?
"Furthermore, if you read through mainstream medical journals you will see that the polio vaccine was (& perhaps in some cases still is) infected with the highly carcinogenic SV40 virus because it contains cells harvested from monkey’s kidneys."
That was discovered and fixed fifty years ago. Do know who solved that problem? Why should we care about your wall of text when you are wrong about that one thing?
It should be up to the parents of the child to decide the treatment for the child, NOT THE STATE.
If the state can take your child away for wanting to try a natural treatment, what kind of world are we living in?
Well said, Lydia!! I agree 100%
"It should be up to the parents of the child to decide the treatment for the child, NOT THE STATE."
Even to the point of beating and/or starving a child to death? Do you support the "parents" in this case? There were obviously using a "natural" treatment they read about in a book.
Perhaps you should do some reading here:
http://childrenshealthcare.org/
And this: Bad Faith: When Religious Belief Undermines Modern Medicine by Paul Offit
A healthier one? A world with less unnecessary childhood (and adult) suffering? A world where people have longer, enjoyable lives?
It must be tempting with some of these comments to edit them and add the words "P.S. I am not a crank" at the end.
You people so concerned about these lives are the same people that support abortion and assisted suicide. ..You don't value life. ..You value driving a wedge between family. ..You're a cancer on society and it's unfortunate you're unable to see this.
@Chris
And what brings you to that conclusion?
I suspect that Chris likes to just jump to conclusions.
I hope that the author of this has no medical or scientific background because otherwise they would be called out for misstating information. According to the medical community there is NO cure for cancer. And throughout this article the author continually mentioned chemotherapy as a cure. It is seen as a way to send cancer into remission but according to the medical and scientific community will NEVER cure the cancer. This was published by someone who knows little to nothing about organized medicine and just makes it all the more laughable.
Elizabeth Urias,
That's a common piece of misinformation that circulates among the credulous on planet altmed. If a cancer has gone into remission for several years it has for all intents and purposes been cured, though some doctors may be reluctant to use the term. I know several people who have been cured of cancer, including a woman who had lymphoma in the early 80s who is alive and well today after being treated with conventional chemotherapy.
What is truly laughable is that you think you know better than a surgical oncologist with a PhD (if you had clicked on Orac's name at the top of the post you would know this).
Ms. Urias, why do you think you know more than a surgical oncologist?
"It is seen as a way to send cancer into remission but according to the medical and scientific community will NEVER cure the cancer."
For instance, why do you think "the cancer" is just one disease? What was the last academic course in biology that you completed?