Amish parents refusing cancer treatments for their daughter

[mockingbird]

I would like to add, I do agree with the prospect of letting people make their own end-of-life decisions. If a child or adult is so far gone that there is no hope, then that person must make the best choices for themselves, and should expect the support of their loved ones. It would not be for me or anyone else to say otherwise. In my previous post, I have made the assumption that Sarah is earlier in her phase of treatment, and not completely far gone.

I totally agree with this.

As multiple people have brought up it's not clear what type of cancer she even has (I think one article I read said lymphoma) let alone how far into her treatment she is/was or if this was after relapsed, metastatic disease, etc. I was also making the assumption she was in the middle of her first treatment for a very treatable disease. If she has relapsed or was diagnosed with something more severe the decision to stop makes more sense to me.

Also, there is a bit of fundy thinking going on or at least lack of education. In this video the father says "Our belief is the natural stuff will do just as much as what that [chemotherapy] does, if it's God's will." :? I was surprised by that honestly because I always see so many Amish people at my children's hospital and the county hospital, I thought it was pretty typical for them to seek Western medical care.

http://abcnews.go.com/US/hospital-battl ... d=20102874

However, that video also says she had tumors in multiple places, which makes it seem like she has a more advanced disease, and that would make more sense to me in terms of stopping treatment. As I said above I was assuming she was in early treatment for a "straightforward" treatable cancer but would have a different opinion if that's not the case. Doesn't totally match up with the 85% the hospital is throwing out though? In the video the dad also talks about how she would suffer more if she "happened to die" on chemo vs. if she "happened to die" without it. Gives me the impression that either the parents are in denial about or are unaware of what would happen if they didn't treat their daughter's cancer (probable death) OR that they were told she has a high chance of dying anyway and there's a high likelihood the treatment will not help long-term, and it's a more serious case than the media is putting out.

[Jinderella]

I may make some of you angry with this post, but to me this is a private decision that should be made by the family. It's very easy to be judgmental when you are on the outside looking in but when it happens to you or to someone in your family, do you really want other people telling you what to do and how to live? Cancer treatments are brutal. There are side effects beyond just nausea and being tired. At some point the quality of life becomes affected. I sure wouldn't want an outsider forcing me to have treatments when the bad days outnumber the good and the prognosis is bad. (BTW, I know what I'm talking about because I have been in treatment for cancer for 7 straight years. Last week I had to have two units of fluids, two blood transfusions and a platelet transfusion just to get my body strong enough for treatment on Monday).

Not angry at all, I completely agree with you. Actually, I'm a big advocate of euthanasia and the right to make your own decisions about your body and live.

The only thing I was trying to explain is how tricky it is that you can't predict the future during cancer treatment. My son had a reaction to one of his chemo's (vincristine) that got him into a coma. When I stood next to him, watching his small body (9 years old, 20 kilograms) on live support, I had doubts. I felt that if he would only wake up to continue to suffer, it may be for the best he didn't wake up at all. But he started breathing again, waked up, was still in extreme pains for months and very depressed from the dexamethasone. Told us he wanted to die, a lot. He is 11 years old now, and he is feeling great, doing great. Now we know it was for the best.

I don't know anything about Sarah and I don't judge her, or her parents, a all. I believe they do have the right to say no. But if her doctors really feel she has a change, I hope they will do their best to convince the girl to hold on.

:shrug: It's hard to express yourself in a different language on such difficult matters.

[treemom]

I think it is ok to not want to pursue treatment even when you and your parents understand it means likely death.

[chaotic life]

The parents testimony states that they AND Sarah are aware that stopping may end her life. It's an unfair assumption to presume that a family simply doesn't understand the consequences of death when they reject chemotherapy. Their testimony is that they DO understand it, therefore I will take them at their word that they understand by stopping this, they will likely bury their daughter. Since they are Amish, I can make a strong reasonable assumption that not even Sarah has been sheltered from death and likely knows many people who have died in her life. Thus, I will assume that Sarah understands death to the best a 10 year old is capable, as is the testimony that has been released.

It is not an easy choice to walk away from fighting when you realize death is imminent. It's even harder when it's a child you are facing this with. In the 90s, at least one family with an infant with Down Syndrome were permitted to refuse surgery to correct pyloric stenosis, which is just about as perfect a cure as modern medicine can provide. However, the tides have turned in recent years and several years ago, a 15 year old boy was restrained while forced to undergo chemotherapy for his Non-hodgkins lymphoma. HE did not want chemotherapy and while his parents wanted him to have it, they made the choice to support HIS wishes. The courts disagreed.

Even a 60-90% cure rate is NOT nearly as curable as pyloric stenosis. However, that cure rate is speculation. The judge has stated in his ruling that Sarah's leukemia has an 85% fatality rate even with chemotherapy. I'm NOT going to speculate a cure rate as stated when the judge has stated otherwise. I have to believe that the medical professionals have presented their BEST case of evidence to take control and thus the statistic the JUDGE is quoting is accurate for this particular child.

[mockingbird]

Even a 60-90% cure rate is NOT nearly as curable as pyloric stenosis. However, that cure rate is speculation. The judge has stated in his ruling that Sarah's leukemia has an 85% fatality rate even with chemotherapy. I'm NOT going to speculate a cure rate as stated when the judge has stated otherwise. I have to believe that the medical professionals have presented their BEST case of evidence to take control and thus the statistic the JUDGE is quoting is accurate for this particular child.

I didn't see that but it makes more sense to me with the rest of the story (like the mention of multiple tumors). And I see a case where death is very likely even with treatment, different from a case where the treatment is likely to be more effective. If this is true then I do think the hospital is overstepping its boundaries.

Do you have a link to where you saw the testimonies? All the articles I've read have had conflicting info and that seems like a better source.

[polecat]

I may make some of you angry with this post, but to me this is a private decision that should be made by the family. It's very easy to be judgmental when you are on the outside looking in but when it happens to you or to someone in your family, do you really want other people telling you what to do and how to live? Cancer treatments are brutal. There are side effects beyond just nausea and being tired. At some point the quality of life becomes affected. I sure wouldn't want an outsider forcing me to have treatments when the bad days outnumber the good and the prognosis is bad. (BTW, I know what I'm talking about because I have been in treatment for cancer for 7 straight years. Last week I had to have two units of fluids, two blood transfusions and a platelet transfusion just to get my body strong enough for treatment on Monday).

Agree wholeheartedly.

[Rescinded and Mended]

The parents testimony states that they AND Sarah are aware that stopping may end her life. It's an unfair assumption to presume that a family simply doesn't understand the consequences of death when they reject chemotherapy. Their testimony is that they DO understand it, therefore I will take them at their word that they understand by stopping this, they will likely bury their daughter. Since they are Amish, I can make a strong reasonable assumption that not even Sarah has been sheltered from death and likely knows many people who have died in her life. Thus, I will assume that Sarah understands death to the best a 10 year old is capable, as is the testimony that has been released.

It is not an easy choice to walk away from fighting when you realize death is imminent. It's even harder when it's a child you are facing this with. In the 90s, at least one family with an infant with Down Syndrome were permitted to refuse surgery to correct pyloric stenosis, which is just about as perfect a cure as modern medicine can provide. However, the tides have turned in recent years and several years ago, a 15 year old boy was restrained while forced to undergo chemotherapy for his Non-hodgkins lymphoma. HE did not want chemotherapy and while his parents wanted him to have it, they made the choice to support HIS wishes. The courts disagreed.

Even a 60-90% cure rate is NOT nearly as curable as pyloric stenosis. However, that cure rate is speculation. The judge has stated in his ruling that Sarah's leukemia has an 85% fatality rate even with chemotherapy. I'm NOT going to speculate a cure rate as stated when the judge has stated otherwise. I have to believe that the medical professionals have presented their BEST case of evidence to take control and thus the statistic the JUDGE is quoting is accurate for this particular child.

I think a big part of where we disagree on this subject, chaotic life, is the assumption that death is in fact imminent. I've not read anything yet that states that Sarah is at the end of her life, and that her family wants to stop treatment because she is about to die. If Sarah is about to die, and her family wanted to end treatment so as to accord her a measure of ease and respect in her final days, you wouldn't hear a single argument from me. However, I have not seen a single thing anywhere that states she is going to die for certain. You and I may both be simply speculating at opposite ends of the debate.

Additionally, I wanted to ask if there is a chance you misread the source claiming that Sarah's leukemia has an 85% fatality rate even with chemotherapy. I ask only because I just found this:

http://www.christianpost.com/news/ohio- ... py-103019/

Scroll down to the second to last paragraph in the article. The hospital specifically states that Sarah has an 85% SURVIVAL rate if she continues with leukemia treatment.

[DarkAnts]

I had a friend die of a brain tumor this year. He was given 6 months to live from diagnoses. He lived 5 years which is longer then anyone with that type of tumor has lived. During that time, he participated in many medical studies. He did not do it because he thought they would make him live longer. He did it to try and help others. He knew that he was going to die from the cancer. There came a point this year where he knew that he was ready to die. It was a hard decision for him and his wife. He just knew that it was his time to go.

I do think that there comes a point with terminal illnesses where you know its your time to die. I think that Sarah has reached that point.

Edit: Its hard to watch someone you love die. I cant imagine what her parents are going through. I hope they have access to a good hospice program.

[treemom]

Actually it sounds like AML because the survival rate for ALL is a lot higher.

In many cases I would say take what I say with a grain of salt. But I spent a lot of time around the cure rates for these two things and 85% is the survival rate for aml

[already hungover]

Actually it sounds like AML because the survival rate for ALL is a lot higher.

In many cases I would say take what I say with a grain of salt. But I spent a lot of time around the cure rates for these two things and 85% is the survival rate for aml

The article says she has lymphoma, not leukemia.

[ShesCrafty]

I didn't see that but it makes more sense to me with the rest of the story (like the mention of multiple tumors). And I see a case where death is very likely even with treatment, different from a case where the treatment is likely to be more effective. If this is true then I do think the hospital is overstepping its boundaries.

Do you have a link to where you saw the testimonies? All the articles I've read have had conflicting info and that seems like a better source.

Yes, do you have a link to that, chaotic life? All the articles I have read have stated a either a high cure rate or an 85% survival rate. An 85% fatality rate puts a different spin on things.

[mockingbird]

The article says she has lymphoma, not leukemia.

Most of the articles I've read have said acute lymphoblastic lymphoma not leukemia, too. It's a form of non-Hodgkin's.

[dawbs]

*snip*

I can only say that in most cases, chemotherapy has an eventual terminating point. Many cancer patients grow up and go on to lead happy, productive lives. But as long as there is hope and she isn't terminal, I can never agree that the best option is to give up midway.

This is just how I feel. Others may not feel the same way, and that's their choice. I can't force Sarah's parents to get her back into treatment - I can only speculate as to why their way of doing things right now could harm Sarah. Obviously, this is their choice. I only hope they are doing what is best for her.

This is a tangent and isn't meant to pick on this poster but...I used to be a lot more on the "might as well throw more meds/chemo/whatever at it--I'll try anything and we'll see if I can live" end of things....

But anymore, I'm not so much.

Twice in the last 3 years, my mom has literally 'gone crazy' from her cancer meds. (the most recent one is actually currently in the middle of [so, yes, I have a lot of bias here]. That's one of the reasons I've been away from FJ a lot recently). And when I say 'gone crazy', I don't mean "huh, chemo-brain really sucks", I mean "no ma, they're not trying to steal your clothes. No ma, they aren't going to murder your grand-daughter--that's the paranoia talking. no ma, there's no one standing there--the room is empty; those voices aren't from people here. No ma, what you're talking about never happened. No Ma, The chicken lady [who, apparently literally is a chicken? may or may not have feathers, I don't think I understand her descriptions of this 'lady'] isn't trying to seduce dad", committed against her will into a psych ward--that level of crazy.

I'm glad my mom is in remission and that she's done swell w/ her cancer treatments. Assuming she recovers mentally and physically (which they think she will. probably.) if this treatment is the only way to have he well, sure, we'd have her do the treatment if we had it to do over again. If she doesn't, I think we'll all be devastated that we encouraged her to take more meds. Because she herself, along w/ everyone else in my family, has thought/said "this is worse than cancer".

If skipping this last round of meds that triggered her crappy reaction moved her from 85% chance of recovery to 100% chance of recovery....Honestly, I don't know that it would be worth that 15% increase. Hell, I don't know that it would be worth a 50% increase.

What I'm to emotionally invested in all of this to say well right now, is, the side effects aren't just lousy. It's like the difference between "ugh, I have to go to work and I hate my job right now" and "ugh, I have to go to work and this job had moved into 'soul sucking' and makes me tempted to drive into a tree every morning to avoid it"--both are 'work sucks'--one, however, is 'normal' work sucks, the other is 'this is creating in me depression and anxiety and is bad for my soul and psyche'.

Sarah may be dealing with 'wow this sucks' sort of reactions to meds. But she may also be dealing with "wow, this sucks away my very being, my very person. If I had to choose between a year of this and ending it now, I'd consider ending it now." It's so far removed from just 'medicines suck' that it's hard to see how much the suckiness is until your drowning in the suckiness (which is lousy because when drowning in suckiness, it's hard to think rationally)

[Angharad Crewe]

Agree wholeheartedly.

I totally agree with this too. This is an issue of bodily autonomy, and everyone should have the right to make their own decisions regarding personal medical treatment. It is a little outrageous to me that a hospital would take the family to court on this issue. Do they really think having a stressed out, resistant patient is going to have a positive outcome?

[chaotic life]

No, I don't have a link at the moment and it's entirely possible I misread something. That said, I work with cancer patients every day I clock into work. This week, our leukemia patient who took the unpopular route of choosing palliative support from the start crossed three years since he started coming to us for that support. He made that choice because he watched what his brother went through with the same diagnosis and 18 months of misery before that brother died. I also worked with another patient having bone pain on the same day. I've seen people stand courageously, and I've seen them cling to life with desperation. I've seen them suffer and soar and go home to hospice. Every six months, we get a list from the oncology clinic so we can cull out files of the deaths we didn't see the obits for in those six months.

I do not speak of this as an outsider who doesn't understand but someone who has made this world my career...and someone whose child's death solidified my stance.

Cure rates are frankly irrelevant to my position. As a medical professional, we are taught to incorporate every child into the decision making process of their care to the very best of their age and developmental level.

My 10 year old daughter is a bright child who understands death in part because she has lived it first hand. The Amish do not shelter their children from death, and they see a lot of death, even child death (farm accidents and inbreeding alone cause higher child deaths than most mainstream kids could even imagine).

I personally find it offensive that because we as a society cannot handle the concept of a child dying that we feel we absolutely must force that opinion on every child and every family. It is wrong for a child to be denied care because of religious beliefs, as that denies the individuality and autonomy of the child and the family just as surely as a court order to force medical care. I am appalled at a parent making a medical decision out of laziness and neglect as well, and yes that would be an appropriate use of court force as well, though that usually comes in the form of CPS charges of medical neglect. However, when a child and their parents make an informed decision they feel is best for that specific child, I do not think overriding that choice simply because it is offensive and unpopular is an appropriate response.

Several years ago, an infant had an Amber Alert issue because his mother took him to a different doctor when she felt his medical team was bullying her and demanding to move forward with renal stints before she felt if was time yet. In the aftermath, it was discovered it wasn't time yet and the doctors and hospital had manipulated the Amber Alert to bully the mother. Just recently, a couple in CA left one hospital and went directly to another because they wanted a second opinion on the treatment of their child with CHD, and had their child removed into state custody for doing so.

The role of a patent in a child's healthcare is to advocate for what they believe is in the best interest of their child. They may not be a medical expert, though never underestimate the ability of a parent in becoming a medical expert on their own child's medical diagnosis. A parent IS the expert on their own child. When fully informed, parents do have a right to make choices for their children, and children have a right for their opinion to be considered. I cannot even say what choice I would make in the position of this child and her family because I am unsure of what her situation truly is. However, I do support the judge determining that this family IS making an informed choice and have a right to make the unpopular choice whatever these circumstances are.

[flyawaystray]

This situation reminds me of Talia Joy. Not the bringing the child to court thing, but Talia had neuroblastoma, did the chemo thing, and got better. Then it came back and she ended up with neuroblastoma again and pre-leukemia. I think she did try some chemo but in the end, decided not to try anything else, I believe, because the cancer had spread to her bone marrow. She was diagnosed with it at the age of 7 and died not too long ago at 13.

She had cancer four times. That's very sad and heartbreaking.

All I can say is that cancer sucks.

[dairyfreelife]

All I can say is that cancer sucks.

There's no other way around it. Cancer is a bastard. There's is nothing good at all about it. It's total shit. Childhood cancer is a rotten pile of shit. No opinion except to say I'm very sorry Sarah has to go through this and I'm very sorry her parents may lose their daughter to this rotten pile of shit's existence. My heart goes out to them.

[flyawaystray]

I don't have children, but if I had a child with a life threatening illness, I don't know how I'd stay sane. Cancer doesn't discriminate. I hope one day, cancer can become a thing of the past.

[Rescinded and Mended]

No, I don't have a link at the moment and it's entirely possible I misread something. That said, I work with cancer patients every day I clock into work. This week, our leukemia patient who took the unpopular route of choosing palliative support from the start crossed three years since he started coming to us for that support. He made that choice because he watched what his brother went through with the same diagnosis and 18 months of misery before that brother died. I also worked with another patient having bone pain on the same day. I've seen people stand courageously, and I've seen them cling to life with desperation. I've seen them suffer and soar and go home to hospice. Every six months, we get a list from the oncology clinic so we can cull out files of the deaths we didn't see the obits for in those six months.

I do not speak of this as an outsider who doesn't understand but someone who has made this world my career...and someone whose child's death solidified my stance.

Cure rates are frankly irrelevant to my position. As a medical professional, we are taught to incorporate every child into the decision making process of their care to the very best of their age and developmental level.

My 10 year old daughter is a bright child who understands death in part because she has lived it first hand. The Amish do not shelter their children from death, and they see a lot of death, even child death (farm accidents and inbreeding alone cause higher child deaths than most mainstream kids could even imagine).

I personally find it offensive that because we as a society cannot handle the concept of a child dying that we feel we absolutely must force that opinion on every child and every family. It is wrong for a child to be denied care because of religious beliefs, as that denies the individuality and autonomy of the child and the family just as surely as a court order to force medical care. I am appalled at a parent making a medical decision out of laziness and neglect as well, and yes that would be an appropriate use of court force as well, though that usually comes in the form of CPS charges of medical neglect. However, when a child and their parents make an informed decision they feel is best for that specific child, I do not think overriding that choice simply because it is offensive and unpopular is an appropriate response.

Several years ago, an infant had an Amber Alert issue because his mother took him to a different doctor when she felt his medical team was bullying her and demanding to move forward with renal stints before she felt if was time yet. In the aftermath, it was discovered it wasn't time yet and the doctors and hospital had manipulated the Amber Alert to bully the mother. Just recently, a couple in CA left one hospital and went directly to another because they wanted a second opinion on the treatment of their child with CHD, and had their child removed into state custody for doing so.

The role of a patent in a child's healthcare is to advocate for what they believe is in the best interest of their child. They may not be a medical expert, though never underestimate the ability of a parent in becoming a medical expert on their own child's medical diagnosis. A parent IS the expert on their own child. When fully informed, parents do have a right to make choices for their children, and children have a right for their opinion to be considered. I cannot even say what choice I would make in the position of this child and her family because I am unsure of what her situation truly is. However, I do support the judge determining that this family IS making an informed choice and have a right to make the unpopular choice whatever these circumstances are.

I hope you're right, chaotic life. I hope that if Sarah and her parents are choosing to end treatment prematurely, it's because they are keeping Sarah's best interests at heart. I hope Sarah will be safe and happy.

[treemom]

Sorry. I misread. Lymphoma is a extra beast in children.