Court sides with hospital

Akron Children's Hospital wants to force an Amish girl to resume chemotherapy after her parents decided to stop treatments.
Associated Press
Aug 29, 2013

An appeals court has sided with a hospital that wants to force a 10-year-old Amish girl to resume chemotherapy after her parents decided to stop the treatments.

The court ruled that a county judge must reconsider his decision that blocked Akron Children's Hospital's attempt to give an attorney who's also a registered nurse limited guardianship over Sarah Hershberger and the power to make medical decisions for her.

The hospital believes Sarah's leukemia is very treatable but says she will die without chemotherapy.

The judge in Medina County in northeast Ohio had ruled in July that Sarah's parents had the right to make medical decisions for her.

The appeals court ruling issued Tuesday said the judge failed to consider whether appointing a guardian would be in the girl's best interest. It also disagreed with the judge's decision that said he could only transfer guardianship if the parents were found unfit.

The family's attorney, John Oberholtzer, said Wednesday that the ruling essentially ordered the judge to disregard the rights of the parents.

Andy Hershberger, the girl's father, said the family agreed to begin two years of treatments for Sarah last spring but stopped a second round of chemotherapy in June because it was making her extremely sick.

"It put her down for two days. She was not like her normal self," he said. "We just thought we cannot do this to her."

Sarah begged her parents to stop the chemotherapy and they agreed after a great deal of prayer, Hershberger said. The family, members of an insular Amish community, shuns many facets of modern life and is deeply religious. They live on a farm and operate a produce stand near the village of Spencer in Medina County, about 35 miles southwest of Cleveland.

"Our belief is, to a certain extent, we can use modern medicine, but at some times we have to stop it and do something else," Hershberger said in a telephone interview.

They opted to consult with a wellness center and treat Sarah with natural medicines, such as herbs and vitamins, and see another doctor who is monitoring their daughter, Hershberger said.

"We see her every day. We watch her really close," her father said. "She runs, plays. She crawls up ladders. She's got a lot of energy, more than she had when she was doing chemo."

Hershberger said they have not ruled out returning to Akron Children's Hospital if Sarah's health worsens. "We told them if it gets to the point that we cannot do anything for her, we would come back," he said.

After the appeals court decision, the hospital said in a statement Wednesday that its goal is to ensure that the girl receives the most appropriate care based on scientific evidence and added that the allegation has never been about "parental unfitness."

It said neither the hospital nor anyone else is requesting legal or physical custody of the child; instead, the hospital said, this case "involves a disagreement between providers and parents over what course of treatment is best for their child."

Robert McGregor, the hospital's chief medical officer, said last week that it is morally and legally obligated to make sure the girl receives proper care.

He said the girl's illness — lymphoblastic lymphoma — is an aggressive form of non-Hodgkin lymphoma, but there is a five-year survival rate of 85 percent if she continues treatment.

Some of the girl's tumors had gone away after the first round of chemotherapy, but she isn't yet in remission, the hospital said.

"We really have to advocate for what we believe is in the best interest of the child," McGregor said last week.

Comments

Informed

This isn't about experimental treatments. This is about parents who don't like seeing their child sick from chemo in the short-term and would rather see her die of cancer, in the long-term.
Comparing SCUBA and cancer is ridiculous. There isn't a 97% chance that SCUBA will kill someone.

Nemesis

It is about unproven, experimental treatments. Maybe not ones in which you, or even I, have any confidence, but experimental treatments nonetheless. Naturally occurring compounds have been shown to be effective. Ovarian and prostate cancer are largely unheard of in cultures with diets heavy in curry, and subsequent testing has shown that tumeric, the primary ingredient in curry, along with high levels of betacarotine (those cultures usually put a lot of cruciferous vegetables in their curry dishes) can actually shrink tumors of those types. Most traditional Asian medicine has just strong statistical backing as mainstream Western methods, but is rejected because Asian cultures have traditionally not concerned themselves with cause and effect, accepting what works without knowing why it works. This is the same paradigm that Western medicine has adopted in recent decades, relying more on statistical analysis than a firm understanding of cause and effect, and yet, the medical establishment rejects most traditional Asian medicine.

The point is, parents make any number of judgements for their kids, many of which carry comparably elevated risks of death or serious injury, and once the state starts second guessing them, recent history shows that it never stops.

ladydye_5

What happens IF the CHEMO kills her? IF she has a horrible reaction to the CHEMO and dies? They are allergic reactions to things. There are people who cannot handle certain treatments. When treatment is actually WORSE than the disease. Who takes the blame/responsibility then? Does the hospital say oops sorry? Does the lawyer say "my bad"? They are NOT refusing treatment, they are trying a DIFFERENT treatment. There are OTHER ways of treating things.

Informed

Chemo patients are monitored throughout their treatment for dangerous side effects. If she starts showing signs of something like that then doctors will stop or postpone the next treatment. Herbs for leukemia are not a treatment and she will die. It's almost a 100% guarantee. They might as well try to pray it away.
The survival rate for childhood leukemia is extremely high if treated with the scientifically, medically established protocol. These parents chose to let a child die who would most likely live. That is not okay.

Nemesis

Patients die from chemo complications ALL THE TIME. I had one friend die from what was supposed to be a cake walk of a chemo treatment, and another almost die, except that HE shouted down the objections of those "monitoring" him until they took the needle out. Chemotherapy is just about the dumbest thing the medical community ever thought up - it's a delicate balancing act between killing the cancer and killing the patient.

Nemesis

Good point, Ladydye. I can count several times I've heard of someone who was diagnosed with cancer, but hey, they caught it early and with a short course of chemo, they'd be just fine. Then they go for their first chemo treatment, there are "complications" and a week later I'm walking past their casket in a funeral home.

Chefs cover their mistakes with sauce; doctors, with dirt.

Informed

Your anecdotes have nothing to do with science. If you want to play that game, I can still you about the multitudes of people I've known with cancer who survived because of chemo.

Nemesis

You misunderstand science. It takes ONE counterexample to falsify a theory. The fact remains that there is no certainty with regard to this decision; it is a gamble. Some people prefer the short odds, some the long. If no one ever takes the long shot, we will never know if it could be successful.

Don't misunderstand - if I or my child were to be diagnosed, I'd listen very carefully to the doctors, do my own research, and in all likelihood, follow their advice, but I'll defend the right of anyone else to do differently. SOMEONE has to take the wild long shots, or we'll never learn anything new.
The medical community is not a pantheon of gods - they are fallible. People are dying from C-diff, and more antibiotic-resistant bacteria are evolving because the majority of the medical community refuses to acknowledge the success of fecal transplant as a treatment. People have had to go "underground" to get this treatment in violation of FDA regulations. A HUGE industry grew up around using acid blocking drugs to treat ulcers until one lone researcher discovered they were caused by bacterial infections. The entire medical community thought that SSRI's were the only treatment for juvenile onset OCD, until one lone professor turned the entire germ theory on its head, and suggested it was a response to infection gone awry, and started curing it with immune globulin. Researchers in India discovered that an HERB can be used to prevent and treat reproductive cancers.

Without people like these Amish parents, the science you claim to understand could not happen. The scientific method requires a control group in any experiment.

Informed

None of this has anything to do with the topic at hand. While yes, there are natural compounds (herbs, spices, other things) that can assist in treating diseases, until there are scientific studies to support their use, here in this country we follow medical protocols.
That's fine if people want to take long shots in terms of their medical care--but not with a child who has no say and whom the adults have the responsibility to make the best decision to increase the odds of survival. You don't take that type of gamble with a child who has an 85% chance of survival with the current treatments. If this child had less than a 50% chance, this wouldn't be a discussion. But the fact that these parents are throwing the best odds out the window is not acceptable.
And just so you know, the juvenile onset OCD of which you speak, is just one type. Other types have nothing to do with infection.
This is no different from the parents that recently were sentenced to prison because they did not seek medical treatment for their diabetic child and instead tried to pray it away. Herbs and vitamins are not going to cure her.

Nemesis

Your reasoning would have prevented the first rabies vaccination, and first smallpox vaccination, both of which were administered to children whose parents bucked consensus of the time to consent to them.

You're right, it's no different from those parents. It's also no different from some teen mommy in the ghetto who raises her kids in a neighborhood where bullets coming through the walls are a common occurrence. It's also no different from parents who travel with their kids to places where modern medical care is not available. It's also no different from parents who BREAK FEDERAL LAW by letting their kids play with lawn darts, like my parents did.

nikfrog

I rarely comment on these forums, however I feel compelled to do so now. I have had a child with cancer. We've had to make that decision about chemotherapy. At such a young age they look at quantity of life more than quality. Yes, chemo makes you sick. It may make you sick for awhile, but ultimtely it could save their life. They are very carefully monitored for side effects, reactions, etc. You want this child to live, you will do anything to make that happen. Kids are very resilient, they usually bounce back well. I do not regret having my daughter do chemo. I would've done anything to try to save her life. Unfortunately, because of the kind she had, it was not to be. It is hard watching your child be sick, but for some, it is temporary. It is much harder to be here without your child. Much harder. I hope and pray their daughter lives.

Huron_1969

Thank you for sharing your experience,
Peace

nikfrog

As far as chemo "killing" you, yes it could. However, before chemo is started, there is alot of research and testing and converstions that happen. You go in to it with alot of knowledge. Nine times out of ten the benefits outweigh the risks. Take a look at the pamphlet that accompanies a prescription. Almost always it is full of things that "could" happen. You "could" have a reaction to anything. As a matter of fact, six months into treatment my daughter became allergic to one of the chemo drugs she was on. It was immediately stopped and never started back up. The fact of the matter is chemotherapy is poison. In fact one of ingredients was mustard gas! But, it could ultimately save your life.

Informed

And in this case it's an 85% chance that it will save this child's life. Not 5%, not 25%, not 50%. Eighty-five percent!! Those are great odds!!

Informed

Oh and btw, not obtaining medical care for your child is child neglect.

ladydye_5

Who decides what is "adequate" medical care? Once upon a time EVERY child was taken to a doctor and given an antibiotic for an ear ache. Now it has been proven that not every ear ache is an infection or best treated with an antibiotic and actually they have been OVER prescribed, causing SUPERbugs that are resistant to treatment. Sometimes it is better to wait it out. (Now I know you are going to say you cannot compare an ear ache to cancer but, for this argument I am). Your idea of medical care for an ear infection and my idea of medical for an ear infection are TWO different things....so you are going to say I am guilty of child neglect? Even IF my pediatrician agrees WITH me?

Informed

It's not about whether or not you or I agree. It's about what the evidence shows, and what is recommended by the doctors based on that evidence. That's the difference.
If we both have a diabetic child that needs insulin, and I give it to my child and you do not, despite that the doctor says it's the child's best chance for survival, you are not obtaining medical care for your child.

Nemesis

The medical community is not some monolithic entity that marches in lockstep agreement on everything. An MD degree does not confer godhood and infallibility. This is the same mainstream medical industry that gave us Tuskegee and Thalidomide, the one that has made it so you can't watch TV for 15 minutes without seeing a commercial about another class action over a drug that was approved and then pulled off the market for unacceptable side effects. The same medical mainstream that, as Ladydye pointed out, endangered not just their patients, but ALL OF SOCIETY by marching sheeplike in lockstep consensus in overprescribing antibiotics, which STILL PERSISTS in this insanity when it comes to C-Diff infections.

Your childlike faith in this industry is frightening. People need to be able to question their edicts, and if that means one in ten thousand kids MIGHT die, the ability to challenge their cathedral holy writ will save far more.

nikfrog

I guess at this point I need to stop reading this. This childs life is at stake. The chances of her recovering from the cancer and chemo are high. Definately a chance worth taking. They should be doing whatever medically necessary to save that little girls life. Period. Life after the death of a child is no fun, trust me. Prayers to that little girl and her family, and to all of you commenting. May you never be in that position.

Informed

Peace be with you, Nikfrog. You would know about this more than any of us. I can't read this any longer because of all the abused and neglected children I have seen over the years.
To all of you parents--you are in charge of doing what is in your child's best interests. You do not own them, they are not property. They are their own person and you have the responsibility to do what is best for them.
That does not mean allowing a little girl, who has a great chance of survival and of living a long life, to die. Period. Some of you are clueless if you think a parent has that right.

Nemesis

nikfrog, I'm sorry if this is painful, but if I read you correctly, you went with the treatment and your child died anyway. This eventuality is observably far more common than the situation we are reading about here. I agree with your estimation of what they SHOULD do, but this is about what government is saying they MUST do. Despite your loss, you know that YOU made the decision for your child, based on the information you had. How much worse would you feel if you had not been allowed to decide?

The Big Dog's back

Difficult decision. But I believe it's the parents and child's decision to try alternatives 1st. This obviously wasn't a snap decision. They talked about and this is what they came up with.

Nemesis

I agree, but who are you and what have you done with Big Dog?

cockynurse

The parents were making an emotional decision based on their perception of the results of the treatment. They weren't realizing some of the tumors were gone and the tx was working-they were seeing their child sick from the chemo. They want to help their child; however, their perception of helping is to stop the treatments that were making her "sick". Sure, their daughter may be running and playing now-let the cancer kill her slowly-she would have ultimately been even more sick than how the chemo was making her if the cancer killed her. I say, way to go, Akron Children's Hospital. Its not about parental choices here-its the difference between an educated decision and an emotional one.

Nemesis

If that's going to be your criteria for when we allow people to make their own decisions in this society, you'll have to institutionalize 98% of the population.

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