11 y/o Quits Chemo because Jesus and Indigenous Treatments

[tropaka]

http://news.nationalpost.com/2014/05/14 ... ervention/

A Brantford, Ont. family’s decision to let their 11-year-old treat her cancer with Indigenous medicine rather than chemotherapy has prompted the intervention of Ontario children’s aid authorities.

“This chemo that I am on is killing my body and I cannot take it anymore,†said the girl, who cannot be named due to the involvement of provincial authorities, in a Tuesday video produced by Two Row Times, a free weekly distributed to Ontario First Nations reservations.

“I have asked my mom and dad to take me off the treatment, because I don’t want to go this way any more.“

Instead, the girl’s only treatment for the disease will be a regimen of Six Nations traditional medicines and treatments known as Ongwehowe Onongwatri:yo:.

McMaster Children’s Hospital, where the girl received chemotherapy, “didn’t seem to have protocol in place for indigenous children whose families choose traditional medicine instead of pharmaceuticals,†said Nahnda Garlow, a Two Row Times correspondent now acting as a spokesperson for the family, writing in a Wednesday email to the National Post.

“For the hospital to pump her full of pharmaceuticals and then degrade her spiritual experience is the exact opposite way of [her] culture.â€

“All in all, it’s a very tragic situation,†said Andy Koster, executive director of the Children’s Aid Society of Brant. “We have to decide as an agency how we wish to handle this.â€

‘I have asked my mom and dad to take me off the treatment, because I don’t want to go this way any more’

As a first step, the agency is currently arranging a meeting with members of the New Credit First Nation — of which the girl is member — and said they will act in “a sensitive way, but also in a way that means that we’re doing our job as well.â€

The girl is suffering from a unique form of Acute Lymphoblastic Leukemia (ALL), the most common form of childhood cancer. Under proper treatment, it has a survivability rate as high as 80% for children.

The girl underwent an initial 11 weeks of chemotherapy at McMaster, after which the disease went into remission. Due to severe side effects such as nausea, loss of appetite and weight loss, however, the girl asked that she be allowed out of future chemotherapy treatments.

Ms. Garlow said the decision prompted a tense confrontation with McMaster oncologists.

“The … family told me that [the hospital’s lead oncologist] repeatedly used derogatory language … regarding traditional medicines, calling them ‘100% ineffective’ and ‘anyone who says traditional medicine works should be thrown in jail,’†she said.

The girl also said she was personally healed in a visit by Jesus Christ, prompting hospital staff to respond that she was delusional.

“Jesus came into my room, and he told me not to be afraid, so if I live or if I die I am not afraid,†the girl said in Tuesday’s video.

The girl is the daughter of a well-known local pastor, and on May 5 related the encounter before a crowd of several hundred at a Sarnia, Ont. evangelical gathering hosted by U.S. televangelist Ted Shuttlesworth.

‘For the hospital to pump her full of pharmaceuticals and then degrade her spiritual experience is the exact opposite way of [her] culture’

“Her faith has been a constant source of strength throughout this great struggle,†wrote her father in a May 9 Facebook post. “She told of her spiritual encounter with Jesus when he entered her hospital room and how everything began to turn around from that point on.â€

McMaster Children’s Hospital was unable to comment on the case due to patient confidentiality.

Nevertheless, in a Wednesday statement to the National Post, the hospital wrote that they are legally bound to alert authorities when they observe a child to be at risk.

“Health care professionals have a legal obligation to notify the Children’s Aid Society when any child requires medical treatment to cure, prevent or alleviate physical harm or suffering, and the child’s parent is unable, does not or refuses to consent to the treatment,†they wrote.

In previous Canadian cases where parents have refused to allow potentially lifesaving medical care to their children for religious reasons, medical authorities have been successful at having the children removed.

Most famously, in 2007 the B.C. Women’s and Children’s Hospital in Vancouver arranged the seizure od four premature babies from a Jehovah’s Witness couple who had refused to allow blood transfusions to be given to the newborns.

Mr. Koster, who says his agency has a good relationship with New Credit First Nation, said they are nowhere near that stage.

“Hopefully, we can come up with something collaborative that can take the best interests of this child into consideration but also the perspective of the First Nation.â€

The executive director added that this is the first case he has encountered in which a First Nations family has eschewed hospital care for religious reasons.

[2xx1xy1JD]

I'll keep a watch on this case.

ALL is basically curable with proper (ie. chemo) treatment. It's one of modern medicine's success stories.

There are borderline cases with tweens and teens refusing cancer treatment, but this isn't one of them. If a mature child is threatening to pull IVs out of their arm, or if a radical treatment like amputation offers less than a 50% chance of survival, there may be a point at which courts respect a child's views. In this case, though, it really doesn't sound like this child fully appreciates just how awful and certain death from ALL would be, or how successful the treatment is likely to be.

I'm glad that the Children's Aid is attempting to resolve this amicably. Ideally, this child should have someone in her community who knows her beliefs convince her to continue the treatments. The doctors don't need to pretend that alternative treatments are effective, but cultural sensitivity will be needed because disrespect and conflict is not something that this child needs. There's also a long and bitter history between white child protection agencies and Native bands, and it looks like the parents may be getting some support in the Native community even from those who don't ordinarily oppose chemo.

[Burris]

The chemotherapy has a good chance of working, which is something this child may not understand even while she suffers unpleasant side-effects from the treatment. She should be encouraged to continue in it; maybe even required to do so by the authorities if the outcome looks good.

If hospital staff were as disrespectful of her wishes and her spiritual experience as the article says, however, then they share in the blame for her decision to stop trusting their judgment.

I don’t believe alternative medicine can kill cancer. I’m positive that chemotherapy sometimes can, especially in cases like this. That doesn’t mean I would look at someone going through the hardships of treatment and just spit on her ideas as to how she might better her circumstances, even I saw them as ineffective. It’s also wrong for staff to claim her spiritual experience was the result of delusion. That simply falls outside their realm.

An atheist whose input into her own treatment were dismissed with prejudice rather than at least taken into consideration (and even introduced as part of the treatment plan if it doesn’t conflict with any necessary elements) would likely want to walk away as well.

[apple1]

I'll keep a watch on this case.

ALL is basically curable with proper (ie. chemo) treatment. It's one of modern medicine's success stories.

There are borderline cases with tweens and teens refusing cancer treatment, but this isn't one of them. If a mature child is threatening to pull IVs out of their arm, or if a radical treatment like amputation offers less than a 50% chance of survival, there may be a point at which courts respect a child's views. In this case, though, it really doesn't sound like this child fully appreciates just how awful and certain death from ALL would be, or how successful the treatment is likely to be.I'm glad that the Children's Aid is attempting to resolve this amicably. Ideally, this child should have someone in her community who knows her beliefs convince her to continue the treatments. The doctors don't need to pretend that alternative treatments are effective, but cultural sensitivity will be needed because disrespect and conflict is not something that this child needs. There's also a long and bitter history between white child protection agencies and Native bands, and it looks like the parents may be getting some support in the Native community even from those who don't ordinarily oppose chemo.

Agree totally with the bolded.

I am personally a cancer survivor who went through chemo. I am also a healthcare professional of many years, currently working in a pediatric institution.

No matter how apparently mature, I do not think an 11 year old is able to properly balance the unpleasant (poor word, I know) and difficult aspects of chemo with the consequences of refusing such treatment in the face of serious illness. Most kids of that age, given the opportunity, would refuse the treatment that may give them long, quality life, without the ability to understand the consequences. Darnit, even as a mature adult and a healthcare professional, there was a point in the chemo saga that I had to force myself to go back for the next round of chemo. This decision should not be in the hands of the child.

[Arete]

It sounds to me that the doctors merely stating the fact that these alternative treatments are ineffective against this cancer is considered "disrespect" by this family.

[Burris]

It sounds to me that the doctors merely stating the fact that these alternative treatments are ineffective against this cancer is considered "disrespect" by this family.

Maybe. There’s also a chance that the oncologist, rather than taking time to explain why he or she has rejects alternative treatments, reacted in a dismissive or even hostile fashion.

There’s a difference between saying, for example, that “Every legitimate study ever published in a peer reviewed medical journal has shown that alternative treatments of the type you suggest is not an effective way to treat this kind of condition,†and simply blurting out that “Alternative medicines are 100% ineffective†and that anyone who advocates for their use should be thrown in jail.

The latter response would be unprofessional: If the child’s parents don’t understand the benefits of chemotherapy – and there’s no reason to think they do know much about how the treatments actually work to eliminate cancer – then there’s no reason to believe the girl does either. In the face of terseness and dismissal, they might have agreed with their daughter’s assessment that chemotherapy is more punishing than it has to be and that there is actually some other way to kill cancer that doctors reject on principle.

[Arete]

So many quacks make money with useless alternative therapies that kill people faster that I have some genuine sympathy for the idea of throwing them in jail.

But I do see your point, Burris, and I have to agree with it that it's all about approach.

[treemom]

ALL has a 94% survival rate in the US. I quote that a lot for my job. Up from 4% in 1962.

But it is also a grueling 2.5 years of aggressive chemotherapy and steroids. It's tough. This is when parents have to not give in. Not for a disease like this with a 94% survival rate and it isn't a relapse, it's madness

[Rescinded and Mended]

Most troubling to me was the fact that she's only been through 11 weeks of chemo. Every cancer doctor I've ever spoken to has said that the entire point of doing maintenance chemotherapy for up to years at a stretch is to stop it from coming back. Securing a remission is only the jumping off-point for curing a cancer diagnosis; more therapy is required to prevent its return.

I hope her parents will do the right thing and get her back into treatment.

[Burris]

So many quacks make money with useless alternative therapies that kill people faster that I have some genuine sympathy for the idea of throwing them in jail.

But I do see your point, Burris, and I have to agree with it that it's all about approach.

That’s the thing. These people aren’t selling quack “therapies†for entertainment purposes. They’re potential buyers who think the alternatives will work. Statistics like the ones Treemom presents might sober them up, if those are offered. If not then the province should force the issue. But if she feels better about the chemotherapy when there’s some comforting alternative treatment thing worked into it, there’s no reason why her doctors can’t work out a compromise.

[Stephanie66]

Since when does an 11 year old get to decide whether or not to continue medical treatments that will, in all likelihood, save her life? Eleven-year-olds don't get to decide when they go to bed or whether or not they brush their teeth. They don't get to decide if they want to go to school. I am not sure an 11-year-old even grasps the concept of the permanency of death-she likely has some fantasies going on as well. Because she is 11.

I have been through chemo and it is far from a walk in the park. But she shouldn't be allowed to quit because she doesn't like it. Alternative treatments will, at best, do nothing. At worst, they will kill her faster.

I am glad the government is interceding, and hopefully she will go back on treatment.

[mockingbird]

Agree with everyone. She likely doesn't fully understand the consequences of stopping chemo and just thinks it sucks - which is a totally normal response from an 11 year old, I would think. But it seems like her parents don't really understand, either. I can also see how the oncologist could have been dismissive in his approach.

I think participating in her culture's traditions could be uplifting/positive for her during such a hard experience, though. As long as it doesn't interfere with the chemo treatments, there shouldn't be any reason she can't do both. My friend worked at a reservation hospital this summer and they had a Native American healer on staff in case patients wanted to see him in addition to their doctors. (ETA: I went to a presentation on traditional medicine by a Native American doctor, and while for many of the treatments there's not any data showing it's successful for specific diseases, I believe she said it HAS been shown to help general well-being/mood.)

[DGayle]

Since when does an 11 year old get to decide whether or not to continue medical treatments that will, in all likelihood, save her life? Eleven-year-olds don't get to decide when they go to bed or whether or not they brush their teeth. They don't get to decide if they want to go to school. I am not sure an 11-year-old even grasps the concept of the permanency of death-she likely has some fantasies going on as well. Because she is 11.

I have been through chemo and it is far from a walk in the park. But she shouldn't be allowed to quit because she doesn't like it. Alternative treatments will, at best, do nothing. At worst, they will kill her faster.

I am glad the government is interceding, and hopefully she will go back on treatment.

There's a catch-22 regarding minors and medical care. They can't sign contracts or anything. They can't opt out of school. They are subject to bedtimes set by parents. But when it comes to medical care, they do have some legal rights, at least in the US. Who is going to argue that a pregnant 11-year-old shouldn't be allowed to have an abortion if she wanted one? You can't cherry pick when a kid should have rights and when they shouldn't when it's all in the same area. So what do we do? Do we say kids are kids and shouldn't have these rights so that parents can make decisions the kids may not like, or do we give kids autonomy and let them decide for themselves?

She needs to be gently convinced that it's best for her. Forcing her and having her fight tooth and nail every step of the way isn't going to do her a lot of good. If she starts physically fighting and yanking on tubes, do you strap her down and ruin her trust in adults?

[artdecades]

I am really wondering how much this is her parents and how much is actually her.

Here is some more information on the case, including a video of the girl. Her reading of the letter sounds pretty detached to me.

Its complicated because of the issues pertaining to oppression of indigenous groups, but in the end this is still faith healing and it still is inappropriate to deny medical attention to an 11 year old because either she or the parents don't want it.

tworowtimes.com/news/physician-tells-ojibwe-family-anyone-who-says-that-traditional-medicine-works-should-be-thrown-in-jail/

[FloraKitty35]

I am really wondering how much this is her parents and how much is actually her.

Here is some more information on the case, including a video of the girl. Her reading of the letter sounds pretty detached to me.

Its complicated because of the issues pertaining to oppression of indigenous groups, but in the end this is still faith healing and it still is inappropriate to deny medical attention to an 11 year old because either she or the parents don't want it.

tworowtimes.com/news/physician-tells-ojibwe-family-anyone-who-says-that-traditional-medicine-works-should-be-thrown-in-jail/

How much are her parents pushing this on her, especially when it comes to the religion aspect of it?

[Arete]

It doesn't sound like her parents are forcing her to take this stand. Chemo is a bitch. It isn't some stretch of reality that can only be accomplished by religious brainwashing that she wants the treatment, with all its horrible side affects, to stop.

[Khan]

I'm a smidge confused. This lass is talking about Jesus telling her she will be ok then her family wants to do First Nation medicine. Can you combine those beliefs easily? I know nothing about the First Nation being discussed.

[Lawsome]

There's a catch-22 regarding minors and medical care. They can't sign contracts or anything. They can't opt out of school. They are subject to bedtimes set by parents. But when it comes to medical care, they do have some legal rights, at least in the US. Who is going to argue that a pregnant 11-year-old shouldn't be allowed to have an abortion if she wanted one? You can't cherry pick when a kid should have rights and when they shouldn't when it's all in the same area. So what do we do? Do we say kids are kids and shouldn't have these rights so that parents can make decisions the kids may not like, or do we give kids autonomy and let them decide for themselves?

She needs to be gently convinced that it's best for her. Forcing her and having her fight tooth and nail every step of the way isn't going to do her a lot of good. If she starts physically fighting and yanking on tubes, do you strap her down and ruin her trust in adults?

In Canada it really depends on the minor or the person in question. If a person cannot comprehend the treatment and its effects, and apply it to their own situation, they are not considered capable. If incapable, decision making is passed onto a capable party, usually the parents. However, there is a duty to act in the patient's "best interests".

If the parents don't consent to further treatment, its possible that children's services will step in as a substitute decision maker. This happened before with a young child of JW parents who refused blood transfusions (in SK I think?). The tricky part will be is that she's at the age where her opinions do start to matter. The question becomes when she becomes capable of making her own decisions. In AB quite a few years back, a 16-year-old JW refused blood transfusions and was allowed to do so, resulting in her death.

[2xx1xy1JD]

There are a number of Canadian case where Children's Aid had to step in because parents were not consenting to medical procedures. Here's one recent Ontario case: https://www.canlii.org/en/on/onsc/doc/2 ... FweQAAAAAB

Re blending Native and Christian beliefs: it's not that uncommon. Natives in Canada were forcibly converted by both the Catholic and Protestant churches. Their old beliefs never entirely disappeared, and there's certainly a desire to embrace their old traditions even among those who continue to be Christian. As well, traditional forms of native healing aren't necessarily seen as a separate religion. For example, a traditional sweat lodge is somewhat similar to a Scandinavian sauna. My husband participated in a sweat lodge when he was working on a reserve, and the fact that he was an observant Jew didn't seem to be an issue for him or them.

[guidedbybobafett]

This is a sticky situation. I don't believe the "government" always knows best and should be able to say that parents have no right to refuse treatment, so any case that sets precedent is concerning to me regardless of the particulars.

In case anyone wants to argue specifics, my disabled sister was having difficulty putting weight on her foot, so a doctor determined it was osteomyelitis, a very dangerous bone infection, and that she would immediately require a shunt. My mother said we would be getting a second opinion and the doctor called the authorities and attempted to say my mother was unfit.

Turns out my sister had a hairline fracture. While I understand that this is a different situation, I don't think authorities are always able to determine what is best for a child even though we hope that they always know what they're doing.

[AmericanAmigo]

Can they maybe prescribe marijuana to help with the nausea etc. ?

[AmericanAmigo]

Can they maybe prescribe marijuana to help with the nausea etc. ?

[Zaverin]

That little girl should definitely not quit chemo. If the hospital staff really are saying things that mock her religion/beliefs then they need a serious talking to. The parents however should be encouraging her to keep doing it...if chemo for that type of cancer works as well as the article says it does then stopping it would be a foolish choice. The hospital staff shouldn't have knocked her religion, but I doubt any traditional medicine can cure cancer.

[adidas]

If you google Tamar Stitt you'll read about a similar case in Australia. The parents decided that clay wraps and herbal tea would cure her. When the courts were about to hand down their ruling about whether Tamar had to have chemo the parents fled overseas, where Tamar died a few weeks later. With chemo she had a 60% chance of making it.

[adidas]

This is a few years old but worth watching. It was a 7 week course of chemo.

http://m.youtube.com/watch?v=DqXjNfS_nJ4