This is long, but it is astonishing reading, in that it is a true story. In fact, I’ve included a link at the end where you can read more of it, because I think you will want to. It is written by Michael Farris, a lawyer for the people, of whom children are a part.
Who should make very difficult decisions for children? Parents or doctors?
In March of this year, 8-year-old Jacob Stieler was diagnosed with Ewing Sarcoma, a dangerous bone cancer. His parents took him to a highly-rated children’s oncology center in Grand Rapids, Michigan.
Jacob had surgery to remove the tumor, which was followed by several rounds of chemotherapy. The treatment was incredibly difficult, and Jacob’s mom, Erin, told me that when she looked her son in the eyes, she knew in her heart that he simply could not survive many more rounds of these drugs.
Erin and Ken, Jacob’s mom and dad, joined by hundreds of others, prayed for Jacob and his complete recovery.
After all of these rounds of chemotherapy were completed, there was a PET scan done to check on the status of the cancer. There was no evidence of cancer detected in Jacob’s body. Jacob’s family and friends rejoiced in his healing—prasing God for this wonderful outcome.
But the doctors wanted to give Jacob several more rounds of chemotherapy and radiation, despite the clean PET Scan. When asked why they wanted to keep giving Jacob these incredibly dangerous drugs, the doctors replied that this was “the standard of care” for his illness.
Jacob’s parents begged the doctors to make an individual diagnosis, rather than simply following unbending standards. But the doctors were steadfast. All children with this cancer needed multiple rounds of these drugs—regardless of PET scan results, the doctors contended.
Jacob’s parents did extensive study of the side effects of the five different chemotherapy drugs that the doctor wanted to administer. And they believed that the risk of the drugs was far greater than the risk of recurrent cancer, since Jacob had a clean PET scan. They said no to the doctors. No more chemotherapy treatment for now.
But the doctors would not take no for an answer. They called child protective services in Jacob’s county and asked the agency to file charges against the family for medical neglect.
After looking into the matter, both the local CPS agency and the local prosecuting attorney refused to file charges. They believed that the parents were making reasonable decisions for Jacob.
The doctors still would not take no for an answer. They called higher authorities in the state level CPS agency. The doctors had to make several calls before they finally found someone who would agree with them.
As a result of all of these calls, the local CPS agency was pressured into filing medical neglect charges against the parents.
The local prosecutor still refused to take a case against the family, so the state level CPS officials hired an independent private lawyer to serve as the prosecutor against Ken and Erin Stieler.
A jury trial is scheduled for early January to determine if the doctors will be given the authority to take over the medical decision-making for Jacob.
When I heard about this case—and checked out the facts—I knew that I could not sit on the sidelines and watch this family be overrun and parental rights be trashed by well-meaning but overzealous doctors.
I recently flew to Michigan and took the depositions of all three doctors who were scheduled to testify against the family.
Jacob’s treating physician is the key.
I prepared for the depositions by obtaining copies of the official “package inserts” that the FDA requires all drug companies to give to physicians and patients. Undoubtedly, you have seen these inserts when you have picked up prescriptions for your children.
The inserts tell you several things:
- Indicated uses—that is a list of the diseases for which there is evidence that the drug is a safe and effective treatment.
- Warnings—these are strong cautions that indicate serious potential issues.
- Side effects—these disclose all of the potential consequences that arise from taking the drug.
- Approval for children—there is a specific disclaimer on many drugs that indicate whether the drugs have been proven to be safe and effective for children.
“Have all of these drugs been approved by the FDA as safe and effective for children?” I asked Jacob’s treating oncologist.
“Yes,” she replied, “they have been FDA-approved for children.”
According to the official package inserts that we were able to obtain, she is just flat wrong.
She wanted to continue to give Ifosfamide to Jacob.
The FDA disclosure for this drug says: “Pediatric Use: Safety and effectiveness in pediatric patients have not been established.”
The oncologist wanted to give Jacob a week’s worth of Etoposide.
The FDA disclosure says: “Pediatric Use: Safety and effectiveness in pediatric patients have not been established.”
The warning on the drug Doxorubicin says: “Pediatric patients are at increased risk for developing delayed cardiotoxicity.” This means that the drug can cause severe harm to a child’s heart—at even higher rates than it can in adults.
In fact, as it turned out, the treating doctor had never even seen, much less read, these official FDA-required package inserts. She did state that she had seen similar information from other sources.
Most of the drugs did not list Jacob’s form of cancer as an “indicated use.” This means that these drugs had not been tested and validated as safe and effective for this particular kind of cancer—even for adults, much less for children.
And then we get to the official warnings and side effects.
In addition to the strong warnings about “congestive heart failure” from Doxorubicin, other drugs the doctor wanted to give were known to have caused cancer—new forms of cancer—in patients being treated for an original cancer. Vincristine’s label is typical of these warnings: “Patients who received chemotherapy with vinchristine sulfate in combination with anticancer drugs known to be carcinogenic have developed second malignancies.” The warning labels say that sometimes these second cancers develop years after the treatment.
All five of the drugs that the doctors want to give Jacob are either know to cause other cancers or have not been fully tested.
Some of the other side effects for these drugs include:
- Damage to the cranial motor nerves
- Serious infections
- Failure of boys to sexually mature
- The inability to father children
It would take pages to recite all of the warnings and side effects.
Parental rights are increasingly being lost in the medical arena. I am beginning to wonder why physicians even bother asking for parental consent if they will just do an end run around the parents whenever it is convenient for them to do so.
To read more, go here.
19 thoughts on “Sheer Terror.”
Hard to “like” this post, but my… how can this be possible? I have never heard of Dr’s being able to trump the parents’ wishes! Unbelievable. The side effects. NOT going there …
ps, how involved did you get in this case?
Oh, I know, Melis, this does seem like it should be impossible in the US,and I appreciate your expression of shock and sadness, but the facts are that it happens. People take their children to other countries to obtain less dangerous medical care, sometimes, and risk facing charges when they return, although the child was cured. US doctors who practice in other countries to avoid such scenes also sometimes face such persecution. It truly is shocking and sad.
During the framing of the Constitution, the personal physician to many of the influential colonists of that day, Dr. Benjamin Rush, warned them that if they did not write “medical freedoms” into the Constitution, we would one day lose them.
That day is here, and has been for a while.
My involvement, however, is not much, but is the type of involvement Michael Farris greatly desires, and is explained to those who follow the link at the end of the post. That is why I posted his words for today, perhaps to interest even one more person in helping with this battle. These lawyers defend folks who need a lawyer who is expert at Constitutional law, and do so for free, but they usually stop at preserving our freedoms to educate our children in a way we desire. This goes beyond that.
But even if no one desires to help, all must be informed of this insidious evil, all must realize how our freedoms are eroding, and most importantly, all must become more studious about our Constitution so we can recognize when we are being asked to do something against it.
You must be an ACLU girl! Personal Freedoms reign! I heard of a case where a child (with i belive bone marrow cancer) didn’t want treatment, and his parents did. I should look to see where that case went. Melis
Actually, I am a “rule-by-law” gal, The U.S. Constitution reigns in this country, and these doctors are breaking the law. They should seek to change the law, instead of taking it into their own hands, in my opinion. 🙂
OK … I love the Constitution. I should read it. ACLU goes too far for my taste, but i’m a MIDDLIN’ Gal.
I can’t believe we don’t have laws over treatments. What about “LIVING WILLS”! … you shouldn’t have to have one for a child, but that could possibly have your rights written in a document.
Mostly what we have in this case is that the laws and the Constitution already provide for us the freedoms we need. Recall, Child Protective Services, established by our laws and which the DOCTORS rightly should call upon in such instances, did NOT think the doctors were doing right. That should have stopped it, but just in case it did not, there is a prosecuting attorney, who, ALSO did not agree with the doctors. That should have stopped it. And it goes on. Our laws were taking very good care of this child, but the doctors were NOT interested in doing this legally, not at all. They just wanted to do whatever they wanted to do. Period. They had not even read the literature accompanying the medications. That’s how interested they were in doing right. At times like this, a person needs a lawyer, which is where Michael Farris steps in. The fact that medical freedom is not protected by the Constitution means any ol’ judge could make some uninformed or even uncaring decision and end up killing someone. We pray this will not happen to young Jacob.
Crazy! The legal system can work. What i have learned from working for an Arbitrator, but he is a lawyer and a Harvard Scholar, is that you have to pick the correct Law or precedent, or case from which to build your case. If you start out by saying, for example, this is a Constitutional case, and ther is NOT enough evidence that supports your “cause” you are up a creek. On the other hand, if you find a similar case “caselaw” where a child was “maltreated” and the outcome was that that Doctor was sued, you can go to court and say,, i.e. in case Williams v. Hospital X, the judge decided that “X’ drug should not be used in the case of “X cancer” — therefore you can move on to other treatments, or sue the doctors for malpractice … or whatever remedy “Makes you whole”.
It is tricky. I deal with this in a much smaller scale when trying to determine the underlying reason for a grievance filed by a Union person. Does this make sense?
It makes a teeny bit of sense to me. I am so not a legality person, and so not political, but I try hard to be a good citizen, and I know wrong when I see it. And when it is THAT plain, that I can see it, then I think more folks will want to know about it. The main thrust here, is that wrong is trying to happen and this man is trying to stop it and needs support. We think of lawyers as filthy rich, but we forget that some work for charity cases and are not so rich. He is an excellent and famous lawyer, hardly ever losing a case, because he knows how to pick a battle. He is hoping this case will provide better protection, in the end, for more people than just Jacob. He believes it can be won and will be a good precedent-setting case. That is how he always works. We shall see, eh? And we shall help.
I’m sure he picked the right laws.
The link at the end of this post took me to Gmail, of all places. Can you share the url. I’m VERY interested in following the rest of this story.
Wow. I must have done it wrong. So sorry and thanks so much for letting me know. I will try to get this right. Hope I can! Glad you’re still hanging around, FLM! 🙂
Okay, everyone. I am so sorry I somehow goofed on the link above but I think I have fixed it now. Just for good measure, here is the url:
I apologize again. Please check it out!
Oh, it is I who owe you thanks for caring, for actually clicking, and for taking the time to communicate the problem! So glad you came along! 🙂
I pray that the courts either throw the case out in its entirety or rule in favor of the parents. Every time I hear of a case like this I find it shocking. It is a very short journey from doctors taking this position to doctors forcing a woman to get an abortion (or force her to have amniocentesis thereby risking miscarriage) because she has the temerity to have a genetic flaw.
Oh I know what you mean, Kate, and thanks for this post!
Actually, although we know the courts will call this “parents vs. doctors” it really is good vs. evil; loving care vs. who gives a flip; Constitution vs. lawbreakers; and more: Jacob vs. cancer.
We really need to wake UP!
Amen to that. I forgot to click on being emailed responses. of course i completely forgot about the thread (airhead moment noted 🙂