Hospital Battling Amish Family's Decision to End Girl's Chemotherapy

[mahatmakanejeeves]

Source: ABC News

Aug. 29, 2013

By ALEX PEREZ via Good Morning America

An Ohio appeals court has sided with a hospital that wants to continue treating a 10-year-old Amish girl with chemotherapy after her parents decided to stop the treatment for her leukemia.

Sarah Hershberger had tumors on her neck, chest and kidneys when her parents initially agreed to chemotherapy at Akron Children's Hospital earlier this year. Her family says the side effects were terrible and they decided to treat her leukemia with natural remedies instead.

On Tuesday, an appeals court ruled a juvenile court judge must reconsider the decision that blocked the hospital's attempt to give an attorney, who's also a registered nurse, limited guardianship over Sarah and the power to make medical decisions for her.
....

Sarah's tumors shrunk after a month of chemotherapy but Hershberger says the side effects became too much for her to handle. In June, the family stopped chemotherapy and began treating Sarah with natural medicines, such as herbs and vitamins.



Read more: http://abcnews.go.com/US/hospital-battling-amish-familys-decision-end-girls-chemotherapy/story?id=20102874

---

There's a video at the site too.

[leftynyc]

1. I'm torn on this

If the chemo will be curative, that's a different story. If it's merely extending her life for a few months and those months will be spent feeling like death warmed over, I would understand stopping treatment.

[Scairp]

8. Me too

If they aren't going to save her life then the parents have the right to refuse the chemo. I kind of feel they have the right anyway. This is a tough one, I'm so critical of those parents who allowed two of their children to die rather than seeking medical care for them when they were ill with something that was definitely treatable. These parents have gone along with the chemo previously so it isn't the same. I have no idea what the child's prognosis is so it's really hard to have an opinion one way or the other. I have to wonder though if this was an "English" child, would the hospital still take the parents to court to resume treatment. Might be a little bit of bias at work over the fact that they are Amish.

[Just Saying]

12. I think parents should have the right to make tough choices when it comes to treatment.

But an 85% survival rate doesn't seem like a tough choice to me. This quote from her dad blows me away

"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."

Read more: http://www.newsnet5.com/dpp/news/local_news/oh_medina/Sarah-Hershberger-Amish-girl-chemotherapy-Appeals-court-sides-with-Akron-Childrens-Hospital#ixzz2dOHp4pVj

Maybe he's misquoted or something, but the idea that 2 days down would make a parent stop chemo for their child is ridiculous to me. I have a 9 year old and if I could get him 5 more years there would be no question.

[Supersedeas]

16. why do you doubt the wisdom of the RN Attorney

what other family decision should the RN attorney make for these parents and other parents in Ohio.

how long before all of us have RN Attorney's appointed to care for our kids

[Avalux]

2. Depends on the prognosis.

Apparently the hospital - the docs who are experts - believe chemo will help and allow the girl to live a normal life. Yes chemo has horrible side effects and I can understand why the parents want to dc it, but they are failing to understand their daughter will die without it.

Tough situation, but I hope the hospital wins out.

[Xipe Totec]

3. If the Hospital is willing to do this pro-bono, then go ahead

If they're going to force the treatment and then bill the parents, that's a completely different situation.

One in which there is a conflict of interests on the part of the care providers.

[TBF]

4. She should only live if her parents are willing to pay? Really?

I agree that it depends upon prognosis. If there is a good chance for long-term survival it should be done. It's so sad that many in this country face death sooner than they need to solely based on other folks' greed.

[cstanleytech]

7. Might want to try rereading that post but thats just a suggestion. nt

[Politicalboi]

5. This is a tough one

But the parents should be the ones who decide. How can the hospital demand you bring your child in for expensive treatment. I hate to bring money into this, but it could be a factor too. Unless the hospital does the treatment for free, they have NO business telling someone they must pay for treatment.

If your insurance runs out, how come hospitals can end your life saving treatment with no lawsuits against them. Let the parents decide.

[Warpy]

29. Children are not the outright property of their parents

The state has a right to step in when parents are abusive or neglectful and denying a kid the right to treatment that will save her life is neglect.

In this case, it's through ignorance. While I think the parents are going to need a lot more support than they've been getting, I think the child's life is a little more important than their ownership.

Were this a cancer with a poor prognosis, I'd have a different opinion. However, childhood leukemias are one of the curable cancers when they respond to chemotherapy.

[cbayer]

6. Really tough situation and I wonder where the hospital ethics committe is coming down on this.

I read another article on this that contradicted the survival statistics given in this article. They were much lower, particularly at 5 years.

Having seen parent take their children through excruciating treatment, I think the decisions are highly personal.

I would tend to land on the side of the parents, as long as they have been deemed competent to make medical decisions.

[TBF]

9. I agree. I don't think ability to pay should be the decider ...

But if there's a very poor prognosis I can't imagine the parents wanting to put the child through the pain of chemo for a very small chance at recovery. That I completely agree with.

[cbayer]

10. The ability to pay does come into consideration in some of these cases, though.

And it can become a factor for many of the interested parties.

It's so hard when this happens. In the end, I'm not sure there is a right answer.

[mopinko]

17. they sound religiously insane to me.

i tend to support parents in this sort of thing, but fear can really cloud decision making in this kind of situation. if there is any religious test that the parents are using here, i say sue the pants off them.

[Yo_Mama]

19. No, the parents started chemo - it's not a religious decison at all

They stopped it because their child became very sick in the second round and wanted them to end it.

This is not a religious objection, but an objection to the effects of therapy offered. This happens sometimes in kids and adults. Adults have the right to say no, but children do not. However when they start begging and pleading for mercy, it is not surprising that their parents sometimes heed them.

Rather than excoriating the parents, I think one should be very thankful not to face this in one's own life. You don't know what you will do until you've been there, and I know medical people that have stopped chemo for their kids. People tolerate the therapy differently.

[mopinko]

25. actually, you don't know that about me.

i had a niece die of cancer because her parents thought they could treat it with shark cartilage.
thinking they can cure her with vitamins and herbs seems like they are leaning on their religious/cultural beliefs.

and it would appear that they objected in the first place if there was a competency hearing.
sorry, woo for children sets me off because of what i have experienced in my own life. don't assume.

[Yo_Mama]

30. No, the parents started chemo

I agree that the odds look good and I would be very surprised if they wouldn't. Apparently they went through the first round okay and then their daughter had problems with the second round. After that there was a competency hearing.

These people did not automatically reject treatment for religious reasons.
http://www.nbcnews.com/health/court-sides-hospital-amish-girl-chemo-case-8C11020755

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.

Sarah begged her parents to stop the chemotherapy and they agreed after a great deal of prayer, Hershberger said.

One court okayed the parents and the appeals court didn't. This happens in other cases too - remember the Hauser case? When there is a high chance of cure it is not that rare for courts to be called in, regardless of motivation for stopping chemo.

I'm sorry for what happened in your life. I don't think the parents are doing the right thing here, but it does bother me that in this country, adults have the right to refuse treatment but kids don't. Even recently we have had the Hauser case and the Cherrix case:
http://en.wikipedia.org/wiki/Virginia_v._Cherrix

Cherrix is still alive, but not cancer free as of 2013. He did receive an alternative form of treatment.
http://www.gofundme.com/1t5fdk#description

[cbayer]

22. What part of what they are doing sounds religiously insane?

Sue the pants off them? They are struggling with an issue that is indescribably difficult and that, hopefully, you will never have to face.

It appears that they are weighing different sets of information, including their religious beliefs, and trying to make decisions. A court initially found them competent.

They obviously aren't using a religious test, or they would not have started treatment to begin with. But in their decision to back off from treatment, they have used their faith to support them. No where have I read that they expect the child to be healed.

[Yo_Mama]

18. Especially since they started it and then stopped it after seeing the side effects.

The 85% survival ratio depends on staging, I believe. Another article:
http://www.nbcnews.com/health/court-sides-hospital-amish-girl-chemo-case-8C11020755

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.

Sarah begged her parents to stop the chemotherapy and they agreed after a great deal of prayer, Hershberger said.

Her chances are decent in theory, depending on the exact spread of the cancer, but could you contemplate 2 years of a treatment if your child became acutely sick after the second round?

I don't know the right answer. This article gives event-free survival rates of 64%-90%. Generally these survival rates go down with advanced disease such as it seems she has:
http://jco.ascopubs.org/content/27/20/3363.full

[cbayer]

23. Agree. It's really not clear what the prognosis is in this specific case.

This is a tragic and difficult situation beyond my ability to even comprehend it.

It the parents are deemed competent, then they ought to be permitted to make medical decisions on behalf of their child. To me, that is the bottom line.

[DeSwiss]

11. K&R

Marijuana's Active Ingredient Kills Leukemia Cells

[magical thyme]

13. she has nonhodgkins lymphoma

and from the description of the tumors in the article, it sounds like stage 3 precursor B type lymphoblastic lymphoma. 85% 5 year survival looks about right based on what I could find; nothing specified "cure" However, I only found one spot mentioning relapse, which said it is rare.

I'm generally against hospital or government interference of this type, but with a very high survival rate, I think it may be warranted.

It's a tough call, but in this case survival without treatment would be nil.

[Yo_Mama]

20. Wouldn't it be stage IV?

http://emedicine.medscape.com/article/203556-overview#aw2aab6b6

With tumors on the kidneys and neck? Aren't the kidney tumors outside the lymphatic system?

[magical thyme]

21. per the NIH, in childhood NHL stage 4 involves bone marrow and/or CNS.

whereas stage 3 is lymphoid or non-lymphoid tumors on both sides of the diaphragm. The neck is above and kidneys below the diaphragm. There is no mention in the article of CNS or bone marrow involvement.

Stage III Childhood NHL
In stage III childhood NHL, tumors or involved lymph node areas occur on both sides of the diaphragm. Stage III NHL also includes any primary intrathoracic (mediastinal, pleural, or thymic) disease, extensive primary intra-abdominal disease, or any paraspinal or epidural tumors.

Stage IV Childhood NHL
In stage IV childhood NHL, tumors involve bone marrow and/or central nervous system (CNS), regardless of other sites of involvement.


http://www.cancer.gov/cancertopics/pdq/treatment/child-non-hodgkins/HealthProfessional/page3

[QSkier]

14. "they decided to treat her leukemia with natural remedies instead"

I did no know that Amish are board-certified Oncologists.

Otherwise, no, parents, you don't get to "treat her leukemia with natural remedies instead".

Cancer treatment, especially for children, is often, given our current state of medical science, very excruciatingly difficult to endure, but success rates, based upon the science and the state of medicine today, gives a child the best hope of survival.

Parents playing doctors on their minor children, without being experts in treatment of the child's illness, I cannot go along with that.

Our current state of medical practice upon Cancer patients is not 100% successful, I know, but it is beter than "Natural remedies" which are not medical science at all.

[TNNurse]

15. This is tough

I am of the mind that we should ignore the fact that they are Amish. They are simply parents who are deciding to not treat their child with traditional chemotherapy. There is a pretty long history of doctors and hospitals seeking legal help to treat a child. Some are because of religious reasons, some are just out of ignorance. I am on my hospital's Ethics Committee. Not all of those are given decision making authority. We are an advisory committee and we work to help MDs, nurses, patients and families work through tough issues, but we do not decide for them. At large hospitals where transplants are done, these committees may make decisions about many issues. We have a policy that we will seek legal help to transfuse a Jehovah's Witness child, but comply with refusal decisions by an adult.

Children with cancer treatment may be involved with such decisions. They have insight and first hand knowledge that their parents do not grasp.

As a person who has gone through chemotherapy and knows just how bad it makes you feel, the knowledge that your cancer is treatable with the expectation of an extended lifetime makes a difference. Length of time and percentage of success have to be considered.

This is tough.....I hope the child survives. I hope the parents will agree to treatment, but I believe the doctors and hospital should take responsibility for her care.

[Sunlei]

24. a lot of childhood leukemia is very,very, treatable w/ many cured.

yes, chemotherapy is harsh. Amish may be taking her high chance away- to be cured.

[Hestia]

27. I think that a mediator/ombudsman who is in no way affiliated with the hospital should

mediate between the doctors/hospital and the parents. They do not appear to be stupid and incompetent, though why anyone would take parents like smacks of a concerted agenda. I do not think hospitals should force people or parents to court at all, over any parenting reason. They are not objective over the matter.

In posts above, we are given snippets of information, but not all, have no idea just how bad she is nor privy to her outcomes. Unless you are in on doctors conferences, you don't know either, so I am not sure "85%" can or is completely accurate.

In watching the PBS Series on Dying, personally, after seeing doctors convince patients to just go one more round of chemo, one more surgery, one more procedure and the patients die anyway within 6 months completely debilitated when they could be at home saying goodbye and wrapping up their affairs. Go on that trip you've always talked about while you are lucid enough to enjoy and remember it. The massive amounts of debt patients leave their spouses and families are beyond criminal. Insurance doesn't cover everything.

I do not think anyone should be a guinea pig for any industry, nor should anyone absolutely insist that anyone go through chemo and radiation therapy. I told my husband I will not do it, don't want it, just give me cannabis and pills, and I'll go out in my own way. At least I'll be around longer to talk to and I may change my mind later. I do not want my darling husband to be paying off my medical bills years after I have passed. I love him too much to do that to him.

I think until you've walked a mile in these parents shoes, the badgering and guilt trips shouldn't be made against them. This is hard enough as it is to having a child with cancer, and being forced to make a decision right now about this is wrong is so many ways. Time may be of the essence, but at least they've thought and prayed over it, so it is not a decision they have taken lightly.

As always, YMMV

[idwiyo]

26. I would say it very much depends on prognosis AND what side effects she is experiencing.

Survival for at least a year with side effects going away after the chemo is finished is one thing.

Side effects like puking your guts out every time you eat something, even long after chemo is finished, pain that can be barely controlled by hard drugs, to the point where you are prescribed heroin (in UK), or to the point where you are stoned all the time, non-stop diarrhoea that lands you in the hospital for several days and results of severe weight loss, severe skin rush that hurts and itches at the same time and you can't touch it because your immune system is fucked due to chemo, severe mouth and tongue fungal infection that stops responding to drugs, etc can easily make one believe they are better dead. Even if your survival rate is 5 years or more.

If that poor kid is experiencing severe side effects, and she only has short time left to live... Fuck it. I definitely wouldn't let my pet suffer through what I described. Can't imagine forcing a human to go through that shit just so they can live few more days.

[Hestia]

28. Excellent reply - you said it so much better than I tried to.