For a children's hospital to abuse the rights of parents is unconscionable. This is a public health issue, much larger than Jacob Stieler.
The hospital and doctors are trying to force a child who has no diagnostic signs of cancer to be subjected to additional chemotherapy based upon some "standard of care" which is not supported by the American Society of Clinical Oncology, nor is safety and efficacy demonstrated or approved by the FDA for the chemotherapy drugs for pediatrics or specifically for the type of cancer with which this child was diagnosed.
The Right to Informed Consent and Refusal appears to have been abused by these agents. Please investigate! His parents have made an informed choice to refuse additional chemotherapy agents at this time, unless diagnostic indications change.
The hospital is Joint Commission accredited and held to a higher standard of Patient Rights than is being demonstrated. http://www.jointcommission.org/assets/1/18/Hospital_Accreditation_1_31_11.pdf
Please research this Parental Rights issue. https://www.facebook.com/notes/helen-devos-childrens-hospital/helen-devos-childrens-hospital-public-statement/10151025782665253
Please link the Michigan General Statute to which the DeVos Children's Hospital refers above: "Michigan law requires the physician to report this risk to the state"?
Please note the "Consumer Bill of Rights and Responsibilities Chapter Four Participation in Treatment Decisions" linked from your own website:
*Discuss all risks, benefits, and consequences to treatment or nontreatment.
*Give patients the opportunity to refuse treatment and to express preferences about future treatment decisions.
*Discuss the use of advance directives -- both living wills and durable powers of attorney for health care -- with patients and their designated family members.
*Abide by the decisions made by their patients and/or their designated representatives consistent with the informed consent process.
This is a Federal breach, not a state breach.
Please research the JCAHO "Patient Rights" and required to be adhered to also.
They 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.
Informed Consent, per the American Cancer Society:
Was this "Informed Consent for Chemotherapy Administration" form of the American Society of Clinical Oncology provided to the family?
The American Society of Clinical Oncology Standards for Safe Chemotherapy Administration are documented for *adults*.
Per American Society of Clinical Oncology: "The standards are not medical advice or legal advice. To the extent that the standards conflict with applicable federal, state, or local legal requirements, practitioners should comply with those requirements. The administering agent is solely responsible for, and assumes all risks of, administering chemotherapy drugs notwithstanding any adherence to the standards herein. ASCO and ONS disclaim any and all liability with respect to the standards and the execution of the standards by any party."
Does the hospital "assumes all risks of, administering chemotherapy drugs"?
According to the Helen DeVos Children's Hospital foundation, Spectrum Health's website:
Patients have the right to make decisions about their own care. You or your legally designated representative can expect the following:
the right to make decisions about your own health care
the choice to accept or refuse medical care and treatment to the extent allowed by law and to be told of the medical results of these decisions
the opportunity to complete an advance directive (Durable Power of Attorney for Health Care Form) and know the hospital will follow it to the extent allowed by law
If asked, the hospital can help you prepare the advance directive.
the right to check with another physician, at your own request and expense
the right to seek the advice or opinion of the Ethics Committee
the right to make decisions to include or exclude any or all family members or significant others in the involvement of your care
the right to get information about end-of-life care
an explanation of your bill, financial assistance and payment options
You also have a right to receive a copy of your bill, regardless of payer
Sent to the foundational board of the Helen DeVos Children's hospital, JCAHO and their PR department: [email protected], [email protected], [email protected], [email protected], [email protected], [email protected], [email protected], [email protected], [email protected], [email protected], [email protected], [email protected], [email protected], [email protected], "[email protected]" <[email protected]>, "[email protected]" <[email protected]>
Contact the Michigan legislature and Spectrum Health hospital foundation:
Email contacts: [email protected]gov, [email protected]an.gov, [email protected].gov, [email protected]lth.org, [email protected].gov, [email protected]an.gov, [email protected].gov, [email protected].gov, [email protected]gov, [email protected].gov, [email protected].gov, [email protected]ichigan.gov, [email protected]higan.gov, [email protected]n.gov, [email protected].gov, [email protected]n.gov, [email protected]n.gov, [email protected]n.gov, [email protected].gov, [email protected].gov, [email protected]n.gov, [email protected]ov, [email protected]n.gov, [email protected]n.gov, [email protected]ov, [email protected]n.gov, [email protected]higan.gov, [email protected]gan.gov, [email protected]gov, [email protected]chigan.gov, [email protected]n.gov, [email protected]gov, [email protected]gan.gov, [email protected].gov, [email protected]igan.gov, [email protected]n.gov, [email protected]th.org, [email protected]th.org, [email protected]ldrens.org, [email protected]com, [email protected], [email protected]th.org, [email protected]health.org, [email protected]health.org, [email protected]
copy, paste and hit send. They will only act, when enough attention is placed on this issue.
Pat Robinson, concerned parent
So glad to see that you posted this - thank you! My mom is good friends with the Stieler's.
Just wanted to add (I don't think this was in your post) - there has now been a petition created urging the Governor of MI to drop the case. Tomorrow (Dec. 15th) a preliminary hearing is scheduled. They are hoping that the case is dropped at that time.
The petition can be found here:
They also have a Facebook Page:
Thanks so much for your support and help!
Could not have said it better myself, "One might wonder what is motivating Helen DeVos Children’s Hospital to pursue a case that only involves one patient. Yes, the $60,000 per month for Jacob’s treatment is a reality, but perhaps the bigger threat is the precedent that is set for all vulnerable parents of children with life-threatening diseases.
Perhaps these parents, many of whom have been bullied and threatened by their doctors that their child may be removed from them if they fail to continue with “standard of care” treatment, might feel empowered by this case to choose to make their own decisions. Maybe they would realize that there are alternatives to our “standard of care”, and even supplemental therapies, which the Stielers have implemented with their son Jacob.
Maybe they would come to realize that they TRULY are the experts when it comes to their own child, and are very capable of making informed decisions for the one whose care has been entrusted to them by God. What happened to “liberty and justice for all”? And since when does MD stand for “Medical Diety”?
And by what authority does a physician, hospital, or the state of Michigan intrude upon the sanctity of the family, and force decisions upon informed, knowledgeable parents who love their son far more than any physician or hospital or state DHS ever could?
And what will be the next level of interference by the DHS into the arena of parental rights? Once it starts, where does it stop?
This case is about the liberty of ALL parents to make medical choices for their child. Just as any adult may decline any treatment offered by a physician, so may the parents of any minor, or so we have assumed.
Apparently the local DHS was quite ready to dismiss this case months ago, finding no evidence of “medical neglect”, and therefore recommending to DHS headquarters in Lansing dismissal of this case. But apparently Helen DeVos Children’s Hospital threatened the state DHS with a lawsuit if they dropped the case. Hmmmm…..must be alot at stake for them.
I hope Judge Solka reads the deposition taken with Jacob’s attending physician very carefully, as he will surely see the extreme arrogance of this doctor in stating that SHE surely should be the one to make this risky decision for the Stieler family, that she is the one who knows best. Wow!
This is SO about a physician whose ego was wounded by a courageous young mother who dared to challenge her question of, “Don’t you trust me to know what is best for your son?” by answering “No, I do not trust that you know what is best for our son.” This was said after the first clear PET scan in July. And this was the cause of the charges of “medical neglect”.
There is no definitive way to prove that Jacob still has cancer cells in his body, but then we do know that most of us have some cancer cells in our body that our immune system is continuously destroying. The best test is the PET scan, and by that test Jacob is showing no evidence of cancer.
Building up his immune system, strengthening his body, and NOT exposing him to additional stress by continuing chemotherapy treatments which were extremely traumatic to him both physically and emotionally, would indeed seem to be the best way to keep this beautiful young boy free of cancer. And this is exactly what Ken and Erin Stieler are doing.
What amazing, responsible, and courageous parents, to dare to stand up and say “No! you will not have your way with our son!” May we all stand with them, and voice our outrage, because one day we could be the ones to be so challenged."
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