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November 29, 2011

Who Makes the Really Tough Decisions: Parents? Or Doctors?

Donate to the Homeschool Freedom Fund to help with this case.

by Michael Farris
HSLDA Chairman

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—praising 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.
  • Approved 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 weeks’ 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 known 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
  • Anorexia

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.

This is not an easy case. It is not a case where a child has a current illness and the treatment is tested and proven to be safe and effective—those cases are easily resolved. The best evidence is that Jacob no longer has objective evidence of cancer. And not a single drug that the doctors want to give Jacob is FDA-approved for children for his kind of cancer.

This is a case where there must be a judgment call—a balancing of risks.

Who makes that call?

The doctor told me during the deposition that she thinks that she should make the call—for every child in this situation. And she would give the same answer every time, rather than making an individual judgment.

I can’t imagine a more clear case of the need for parental rights. This is a decision that requires the wisdom of God.

HSLDA was established to defend parental rights in the context of homeschooling. But the assault on parental rights comes to us on many fronts. This is why we have set up the Homeschool Freedom Fund to enable us to fight important cases for the broader principle of parental rights. Our regular membership fees do not stretch far enough to cover these kinds of cases. We truly need your help to be able to fight for the principles we all hold dear.

If you would like to stand with us in this critical battle for parental rights, I would ask you to send the very best gift you can to the Home School Foundation’s Homeschool Freedom Fund. All gifts to HSF are tax-deductible.

This trial is coming soon—we will send out email alerts if there is any change in the schedule.

Fighting a case of this magnitude is an expensive proposition. I hope you will be as generous as possible so that we may cover travel costs, local counsel, and deposition expenses—for this case and future cases where justice demands action to preserve freedom.

Our nation was founded upon the traditions of Western Civilization. This civilization was founded on the principles of the Word of God. God gives children to parents—not to the state, and not to doctors. In cases like this one, our legal system must remain steadfast in following the principle that God has delegated these kinds of decisions to parents, not to doctors, social workers, or courts.

Please pray for the Stieler family’s case and help as best you can. Thank you.