Ohio Amish Girl, Family Flee to Avoid Forced Chemo

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A 10-year-old Amish girl with leukemia and her parents have fled their home in Ohio, leaving the country at one point, so that she won't be forced into resuming chemotherapy treatments, the family's attorney said Wednesday.

The family has been fighting a hospital in court for months after the parents decided to halt the treatments because they were making the girl sick.

They left their home in rural northeast Ohio just days before a state appeals court appointed a guardian in October to take over medical decisions for the Sarah Hershberger, said attorney Maurice Thompson.

"They don't want Sarah to be taken away," he said.

Doctors at Akron Children's Hospital believe Sarah's leukemia is treatable, but say she will die without chemotherapy. The hospital went to court after the family decided to stop chemotherapy and treat Sarah with natural medicines, such as herbs and vitamins.

Written By: John Seewer
continue to source article at abcnews.go.com

23 COMMENTS

  1. I am torn about this one. Forget the religion. The doctor’s have a recommendation. They recommend chemo. That does not obligate the patient to follow orders. However, there is a huge caveat, and that is that we are talking about a child and a decision being made FOR them that they might not make for themselves.

    Many of us advocate for the right to die. The right to die with “dignity”. The right to assisted suicide. Jack Kevorkian is NOT a ghoul to me. I know 10 is not the age we visualize as the age of the person that is dying.

    But, dignity is in the eye of the sick person, no?

    I don’t know. This one is tough. This is not an antibiotic and strept throat. Chemo can kill you. My MIL had ovarian and while on Taxol and Carboplatin, her white count dropped to 0.1. Her hemoglobin and hematocrit were alarmingly low. The cure was killing her. SHe came very very close to dying.

    I have a guy who I grew up with who has pioneered “molecular glue” it is a chemical that acts like a mordant. When you inject it into a tumor, it attracts and binds the chemotherapeutic agent and keeps it localized in the tumor. this would not help the young lady in this story, but worth mentioning.

    Also, Amish means ignorant. Now, before i am accused of being prejudiced, what I mean is that they are the only group of people in America that are not bound by compulsory education laws. They do not have to attend school and many of them go to schools that are ONE BIG ROOM. All kids of all ages in one big classroom. They are trained in their religion and how to work.

    So, it is not at all surprising that they would make a backwards decision, as they are not armed with any education or knowledge thay would advise them to do any different.

    I still do not know where I stand on this.

    • In reply to #1 by crookedshoes:

      I still do not know where I stand on this.

      I’m clear.

      the parents decided to halt the treatments because they were making the girl sick.

      Thompson, who leads the libertarian 1851 Center for Constitutional Law in Ohio, said he believes that the case is an example of the courts trampling on the rights of parents.

      Fnck them. Its whats best for the child. Its hell for her, so of course she wants it to go away, but so often kids need to be helped through their trials and tribulations. They ain’t seen much yet. It takes enormous strength and courage from their parents not to give in to their selfish desires of making their own hurt go away. Are kids with wussy parents to be allowed to die?

      Thousands of kids have got through and had wonderful lives as a result.

      there is a high survival rate with treatment.

      She is not dying yet. A final dignity and THAT strength is not called for…yet.

      She’ll die without treatment. And no they won’t get to see her in Heaven as planned. But a good chance she’ll live with it. The treatment is HORRIBLE! What’s new?

      Thing is we can’t second guess the professionals who of all people will know all the facts of the case.

    • I do think cases like these have more to do with education than religion. I’ve heard a few stories about Amish parents who turned to herbal treatments (it seemed that it was often at the advice of a chiropractor) while eschewing prescribed medical treatments. It wasn’t for things like simple colds, either – these kids had serious medical conditions.

    • Well, I am torn about this one. But for completely different reasons than the ones you present in your comment. I am torn about this one since I don’t know all the details. How severe is her condition? What is the prognosis of survival without chemo therapy? How severe are the symptoms she suffers from her treatment? Are all other options ruled out?

      That said, if the hospital is right that she has a good chance of getting cured and chemo therapy is the only option then I would definitely say the parents are wrong on this one. We are talking about a ten year old girl. It’s absurd to make a child responsible for such a big and serious decision. I think it’s pretty clear that we are being presented with the views of her parents, not her views. This whole libertarian discussion about individual freedom is pure bullshit in my opinion. What they are basically saying is that children are the property of their parents’. With regard to child abuse we all realize how absurd that would be. Yes, of course the government should not invade people’s private lives without good reasons. But, at some point we as a society are obliged to protect members of our society that can’t defend themselves from being hurt. In this case, if the parents get their way, this child will most likely die. How can we as members of the society stand by and just watch this happening. In my opinion this is no different from watching a child being abused to death while doing nothing about it. Like I said before, this whole debate is based on the idea that children are not individuals with the same rights as grown-ups. They are the property of their parents’, and that is something I think no modern human being should accept!

      In reply to #1 by crookedshoes:

      I am torn about this one. Forget the religion. The doctor’s have a recommendation. They recommend chemo. That does not obligate the patient to follow orders. However, there is a huge caveat, and that is that we are talking about a child and a decision being made FOR them that they might not mak…

  2. Phil,
    I know. And, I agree with you. I also know that you are educated and intelligent and that you know how statistics and clinical trials work. Having said that, I live close to that Amish land of Lancaster Pa, and I know that they have ZERO understanding of any of the things that i’ve mentioned.

    So, i guess, I disagree with their decision, however, I fully see how they arrived at it.

    • In reply to #3 by crookedshoes:

      Phil,
      I know. And, I agree with you. I also know that you are educated and intelligent and that you know how statistics and clinical trials work. Having said that, I live close to that Amish land of Lancaster Pa, and I know that they have ZERO understanding …

      I know a little of them. I certainly met them/some in upstate NewYork. And they once became (demanding) customers for two bespoke lighting products we made for them. A battery powered, red neon light for the rear of their buggies and a battery powered fluorescent lamp to see into their freezers in the outhouse. This was about 1994 though. They seemed quite savvy and not a little stylish….

      I do understand what you are saying though….but they can’t kill her ‘cos it hurts to save her. Thing is, like most deeply religious, they think they have two choices and they don’t.

  3. The kid is going to die and it will be on the parents hands. No issue there. But, the Amish are actually excused from following the Constitution. They will ave to live with it. i hope that they wake up before the child dies, but fear that their awakening may never happen or it will be years from now.

  4. What if Sarah adamantly refused chemotherapy? Would she be strapped to the bed, and the chemicals forcibly administered? The article said they would not force the girl into chemotherapy while the case is being appealed. She also begged them to stop the treatments.

  5. So, the chemo makes her sick. What do these parents think the leukemia will make her feel like? A sure death from anemia and organ failure is better than a few months of chemical misery with the very real hope of a cure at the end of the tunnel? According to recent stats, more than 95% of pediatric leukemias can now be cured. What parents would turn that hope down and opt for herbs and prayers instead?

    This is so predictably tragic.

  6. crookedshoes, You make some excellent points
    I agree that the right thing is for the girl to receive treatment but the enforcement of the treatment is where the grey area begins
    As non theists do we kick down the doors of the Amish parents and forcibly administer the medication? But why stop there, Should we insist on the parents not teaching their religion and traditions. in an ideal world they wouldn’t believe in this hocus pocus buls–t.
    But I’m afraid it’s a slippery slope when we start forcing our beliefs or non beliefs on others

    • In reply to #9 by barry_w_miller:

      crookedshoes, You make some excellent points
      I agree that the right thing is for the girl to receive treatment but the enforcement of the treatment is where the grey area begins
      As non theists do we kick down the doors of the Amish parents and forcibly administer the medication? But why stop there,…

      Slippery slopes argments can be used in both directions. Do we allow parents to spurn medical treatments and just pray for cures? Should we allow parents to get a preacher to drive out demons instead of turning to medicine?

      This isa child and no-one except medical professionals acting with knowledge and professional best interests of the child should be making such decisions.

      I saw my parents torn apart when my sister, 16 years old, begged them to get her chemo stopped and allow her to die. She went on to get married, have two children, and a very happy and fulfilling life until she died at 29,

      It is totally understandable that the parents think they are doing the best for their child, just as it would have been if my parents had asked the doctors to stop the chemo (they didn’t, but they igh have done) not for reasons of faith, but the pain of seeing your child go thruough such treatments is beyond words.

      Under suchstresses parents can make wrong decisions, and such decisions should be taken out of their hands. A distance is needed, a detatched view, an informed view.

      Even a medical professional in that position as a parent can have their objectivity displaced, let alone some backward (educationally) parents.

      In this particular scenario, is the parents religious freedom to believe whatever woo they want to more important than that child having a chance at life?

  7. “They don’t want Sarah to be taken away,”

    Well if she has the chemo she won’t be taken away by an uncaring god, and will, in due course be returned to her parents by the caring doctors

  8. I am not torn at all…

    I have a fairly aggressive form of lymphoma and it’s not the first time I’ve had to entertain this particular guest. Since I now know what is in store for me when dealing with the medical fraternity and the world at large, I chose to not opt for treatment. In fact, the further I can get away from “caring” doctors, lawyers, idiots and the medical profession in general, the better.

    I am quite intelligent and in no way irrational. The decisions to die at my own hand, when I chose to, on my own terms, rather than to be butchered, poisoned, nuked and generally experimented upon, is based on a calculation of cost versus benefit. I am not some guinea pig to be coerced into “making the world at better place”. My body and the quality of my life do not serve some higher purpose other than to remain alive for as long as it is tolerable to do so.

    The costs to which I make reference, in this instance, are not only the monetary cost, although I fully intend keeping my hard-earned cash out of the pockets of the immoral looters in white coats that constantly attempt to dangle either the carrot or wave the stick in my face. The “fear of death”, “the ones you leave behind” or a “long, full life”. Every cent that treatment would have cost me will go toward really enjoying life with my family and friends, while I still have the life to live.

    I refer also to the cost in terms of my quality of life and the long-term, protracted emotional cost to the family and friends, which they and I have to endure throughout treatment and afterwards. In those terms, it is much cheaper to just get it over with once, than to have everyone paying over the span of months and years. Again and again. Every check-up is another toss of the coin.

    In terms of those costs, looking back, the treatments to extend my life were really not worth it, first time round and those costs will not be borne again. The sigh of relief was almost palpable when I informed everyone of my decision. There were the half-hearted, obligatory protestations that I should not give up, etc. until the proposition of living life to the full right until the end actually registered.

    I am not saying that my life was lived without worth, before. Never mind the constant worry of the sword hanging proverbially over my head that my illness may return, which it has. There is nothing in the world that could convince me to even consider re-evaluating my decision, given that I have all the relevant medical, ethical, moral and personally historical information at hand. This most definitely falls into the informed decision category.

    I am not religious at all. In fact, I am about as extremely slanted in the opposite direction as is possible. I am a scientist and rational human being, before anything else. This has nothing to do with law. It has nothing to do with morality or the right to assisted suicide. It has nothing to do with a child’s right to die. It has nothing to with protecting children from evil parents. It has to do with your lack of understanding that sometimes the cure is worse than the disease and the inevitable end it brings. I am dying. The good news is that so are you. This is directed at all of you who sit at home in your comfy chairs, pondering the meaning of life, the mysteries of the universe and the morality of mankind without actually putting much rational thought into the process. “Rational” meaning from every angle, particularly the person it is happening to. Forget what you think you know about how you think things should be. Until you have really thought things through, or you have personally been there, you are completely clueless. Instead of making broad sweeping statements, ask questions to establish a view on the entire picture. Approach each and every problem in your life with as little personal context as possible. Granted, true objectivity is impossible, but try at least.

    So what, if these nut-jobs shun modern living and the medical profession for whatever reason? Does it really matter, if it was god, just plain stupidity, ignorance or, in my case, an informed decision that causes it? Yes, I understand it is a child, who is legally not allowed to make any important decisions for herself. In one instance, she will die and that may or may not be tragic. In the other, she may or may not die eventually and that will be tragic, if the balance of her life is spent fighting a disease that should have killed her months or years before.

    So please, quit with quoting statistical probability for clinical trial rates and the like. Regardless of how accurate the stats for all the medical drama is, it does not account for the complete, total cost for everyone DIRECTLY involved, and that means NOT YOU.

    You cannot decide what is best for anyone but yourself. You cannot even decide what is best for your children. Well, you can, provided that your decisions do not happen to be contrary to the current regime, or you will be persecuted. Don’t sit there and blab about what is “best for the child”. All you have are vague generalisations that are formed in the context of popular opinion and monolithic structures with vested interests.

    Do you know what is best for me, or do you want to rattle off some canned, neatly packaged, philosophical platitude? If you did know what is best for me, I would have to start praying and address you directly. You do not know what is best for anyone, other than the person that occupies your body.

    The day that we have a cure for everything and anything, that involves no direct or indirect costs to anyone directly involved, is the day that I will agree that there is no excuse or valid reason to not be cured.

    • In reply to #14 by iRATe:

      I am not torn at all…

      I have a fairly aggressive form of lymphoma and it’s not the first time I’ve had to entertain this particular guest.

      You cannot decide what is best for anyone but yourself. You cannot even decide what is best for your children. Well, you can, provided that your decisions do not happen to be contrary to the current regime, or you will be persecuted. Don’t sit there and blab about what is “best for the child”. All you have are vague generalisations that are formed in the context of poplar opinion and monolithic structures with vested interests.

      I am sorry to hear of your prospects. Surely most here can understand what you are saying and the reasonableness of your position about yourself. It is an all too familiar state of affairs to me. We lost someone in the family to leukemia after years of struggle recently. He pushed on with a last treatment as something of a gift to those nearest and dearest to him. It was an unfair if unspoken ask from us though.

      All you have are vague generalisations

      This though is wrong. “We” have expert medical opinion and statistics.

      Childhood Leukemia Overview

      Survival rates for childhood leukemia

      Some parents want to know the survival rates for children with leukemia. Others may not find the numbers helpful, or may even not want to know them. If you would rather not read about the survival rates, skip to the next section, “How is childhood leukemia treated?”

      The 5-year survival rate refers to the percentage of children who live at least 5 years after their cancer is found. Of course, many children live much longer than 5 years. With acute leukemias, children who are free of disease after 5 years are very likely to have been cured, as it very rare for these cancers to return after such a period of time.

      Current 5-year survival rates are based on children first diagnosed and treated more than 5 years ago. Improvements in treatment since then may mean an even better outlook for children treated today.

      The 5-year survival rate for children with ALL has greatly increased over time and is now more than 85% overall.

      The 5-year survival rate for children with AML has also increased over time, and is now in the range of 60% to 70%. However, survival rates can vary depending on the subtype of AML. For instance, most studies suggest that the cure rate for acute promyelocytic leukemia (APL), a subtype of AML, is now higher than 80%.

      For chronic leukemias, which are rare in children, 5-year survival rates are less helpful, because some children may live for a long time with the leukemia without actually being cured. In the past, 5-year survival rates for chronic myelogenous leukemia (CML) were in the range of 60% to 80%. Since newer medicines that work better have been found for CML in recent years, survival rates are likely to be higher now, although these new drugs have not been in use long enough to be sure.

      • In reply to #15 by phil rimmer:

        This though is wrong. “We” have expert medical opinion and statistics.

        When speaking about the vague generalisations, I was referring specifically to concepts such as relying solely on expert opinion, without the apparent need to apply any further thought at all.

        Could you step out of the rut and explore a subject from more than just the expert opinion? Expert, in any context, is a singular view on a specific field, usually to the exclusion of other areas of humanity, and quite often bent on self-propagation.

        If the consensus among the expert crowd in a given profession, such as our beloved oncologists, all agreed that slow-roasting someone over a medium fire for a few months was a definitive cure, does that make it right? At the same time force feeding them substances that utterly destroy their appetite and their teeth from the constant vomiting – never mind their self-esteem or capacity to maintain gainful employment. Who needs to support a family anyway. You’re just ill. It will all sort itself out somehow.

        The experts have spoken. It is good and right. Let’s not throw the children into the mix, that cry themselves to sleep every night, because Daddy looks like he’s about to die anyway, besides the fact that exactly that may just happen tonight. Let’s not speak about the spouse that becomes deeply depressed because of having to wear a mask of brave, courageous lies all day, every day. Then the rotisserie chicken gets to look after the children and the spouse, while trying somehow to maintain the will to live at all.

        You know, I should just stop arguing, because the expert opinion must be right. They are, after all, experts! If wonder if one still remains human, once the expert status is acquired. How could there possibly be any factors other than that opinion or the 5-year survival rate?

        It is called a 5-year survival rate for a reason. You die in agony within those five years. Whether it is the agony of the treatment or of the disease becomes more or less irrelevant to the person dying. Or maybe not, if the numbers seem positive and hopeful.

        Five years of hell doesn’t sound so bad to become a statistic, to be quoted by people that would expect someone to go through further hellish, excruciating agony, just so the object of their love and affection can be available for a bit of pleasant chit-chat for a month or two longer. I can forgive you that sentiment, because it is after all, human. What the rotisserie snack should have done, is apologise to their beloved and ask for understanding that they should not be asked to go through this again.

        Maybe I should be looking at the 10- or 15-year rates as motivation to not go there at all?

        Here’s a challenge… if you smoke, great! If not, find a smoker. Acquire a lighter, either way. Strike the flint and wait for the flame to settle. Take your other hand and hold it directly above the flame for 5 minutes. I’m not asking you to do it for 5 years, just 5 minutes, although I’d even be impressed with 5 seconds.

  9. In reply to #14 by iRATe:

    iRATe, very sorry that you and your family have been put through the wringer.

    I too am not torn – as much as it pains me (as if I have any rights over somebody else – I get it, I don’t), the parents have a right to decide for their child when they cannot give or withhold permission for themselves.

    The major point you raise is that it must be with informed consent. Sarah’s parents clearly don’t want her to suffer unnecessarily and they are treating her with “…natural medicines, such as herbs and vitamins.” If this is as a way of maintaining her health (however defined) until such time her disease progresses or disappears, fine. I don’t agree with it, but that’s not my call.

    On the other hand, if they are hoping that this will effect a cure or prolong her life, I argue they are not fully informed. The family lawyer mentions the “…family told him that she has more energy and that CT scans show the [alternative] treatments are working.” This sounds like a confirmation bias as she had already had 2 months of conventional induction chemotherapy.

    The situation I fear here, is that they will eschew medical care if or when it comes to palliating her condition. I’m not advocating, for example, a horrible 4th-line/unproven treatment to gain all of 2 extra weeks but I would feel very leery if I wasn’t convinced that they realise there may be other (medical) things that need looking at if she was to meet her end in dignity and comfort. If her situation goes south, I hope they won’t continue to hide her away – be that for fear of embarrassment (at appearing to admit ‘they were wrong’ in some way), stigmatisation as ‘bad parents’ or that the court will take ‘control’ away from them again.

    • In reply to #17 by Docjitters:

      Finally, a balanced, measured opinion that is worthy of respect.

      Sarah’s parents clearly don’t want her to suffer unnecessarily and they are treating her with “…natural medicines, such as herbs and vitamins.”

      I, too, don’t think that we are looking at a pair of monsters that keep their daughter locked up in a cellar, chained and shackled. From as much as I can glean, they are not refusing medical treatment altogether. This particular set of parents is monitoring their daughter’s health and condition, closely, very much in the same manner as any loving parent would. At the moment she is on the mend. If there is any regression, I’m sure they will notice and respond how they best see fit. As you pointed out, it is the fitness to make any decision that concerns me.

      The fact they opted for chemo in the first place, demonstrates that they did consider it a viable treatment. That thought has not magically disappeared from their consciousness, although they now have a slightly more accurate view of what it entails.

      What the parents should do is consult less with doctors and lawyers. Their skewed opinions are already known and clearly established.

      In this context, these poor parents are not Amish, they are just parents. They should be consulting with as many of their peers as possible, and by peers, I mean other parents that have had their own children go through this. Specifically, parents of children that have survived the treatments and are “cured”, for want of a better word, parents who’s children are still undergoing treatment, and also parents that have lost their children to death, to gain a balanced perspective of what their daughter may have to go through before dying anyway.

      Then it is time for a serious discussion with their daughter, all lies and niceties put aside, for the time being. Then, the three of them need to decide together what is best, with Mom and Dad having the veto, obviously.

      If the parents dedicate all due diligence to making the best decision – the state, lawyers, doctors and all the uninformed, bunny-hugging-wannabe-do-gooders should butt out. These are the most difficult decisions to be made by anyone – ever. What should be enforced by the state, is due diligence: Educating yourself about every aspect of your circumstances, so that you are in a position where you are finally, actually capable of making the right decision for yourself and your family.

      The best that any family can hope for, is that there is the minimum amount of suffering, regardless of whether treatment does or does not occur.

      • First, I want to tell you how deeply sorry I am for what you and your family is going through. I wish you all the best. Of course I wish that you will be cured and live a long and happy life, but from your comment I understand that might not be the case. I really admire your honesty and as a nurse I find your comments really inspiring and interesting.

        Still, going back to this particular case. With your experience of being very sick for a long time and living with the constant uncertainty of death hanging over you I wonder how you think you would react in this situation. Say if your ten year old child was diagnosed with cancer and was suffering terrible symptoms from chemo therapy. If physicians thought your child had a good chance of being cured. How would you as a parent discuss these things with your child? Say that your child was devastated and just begged that it would all end. Saying that she can’t take it anymore. I’m not searching for right or wrong answers. I’m honestly interested in your perspective since you have first hand experience of this disease.

        In reply to #18 by iRATe:

        In reply to #17 by Docjitters:

        Finally, a balanced, measured opinion that is worthy of respect.

        Sarah’s parents clearly don’t want her to suffer unnecessarily and they are treating her with “…natural medicines, such as herbs and vitamins.”

        I, too, don’t think that we are looking at a pair of mo…

  10. Dear iRATe

    I am acutely aware of the possible hurt I may add to your burdensome troubles but I also worry that undue emotional speech may cloud facts and lead some third party to make a less informed choice. I clearly can have no idea of your suffering. Worse, as someone who is less empathic that average, I find I can’t put myself so vividly in another’s shoes. It is, however, a sobering corrective to hear just how horrendous the treatment can be. But, I would suggest that my recent, second hand experience of the same suffered by a close family member, seemed far less egregious, though nevertheless deeply unpleasant and shows, if nothing else that there can be varieties of experience during treatment.

    I feel, though, we have no right to advise others about their medical treatment if we are not ourselves doctors. Clearly a myriad different opinions can be got from each of us. Direct experience may speak of possibilities good or bad but may be exceptional and not so informative for all its palpable truth.

    Further, I feel I must speak up for doctors, not just as experts in disease, but as experts in the varieties of suffering their patients undergo. Talking to a number of cancer patients over the last few years suggested to me entirely the opposite attitude of doctors to the one you portrayed and sadly experienced, to whit, treatment without quality of life or a credible prospect of it is seen in my limited sample a cruel imposition. Oncologists particularly seem prepared to plan for that transition from therapeutic to palliative care and are so trained, though by your account seem to have dismally failed. The latest research is into how the mitigation of suffering with earlier palliative care can enhance therapeutic outcomes.

    The experts say the prospects for this girl’s future outcomes are good. In the US the prospects for childhood lymphoblastic lymphoma are very good indeed 90%. And remember in children those that clear 5 years more often than not go on to remain symptom free. Her doctors are not reporting an unreasonable expectation for her outcome.

    If I have upset you in anyway I am deeply sorry.

    With the flame I would last four seconds…, no I flatter myself…three…

  11. Dear nunbliever,

    your comment (#20) directed at me has disappeared. Edit: Now it’s back…. I read it last night, but just did not have the energy to respond at the time.

    Essentially, you asked how I would handle this situation myself, if presented with it. I did not have to think about it too long or hard. I would send my child for treatment, without question. In fact, with her screaming and kicking, I would strap her little wrists and ankles to the bed myself, if need be. I would also, from several different oncologists presented with the same information, get the worst estimate of how long it would take for the treatments to indicate any real improvement. I would then explain all the implications to my daughter beforehand, without sparing any detail.

    I would also make clear to her that the medical profession seems convinced that it should take n number of weeks or months to get a good idea if the treatments are working or not. I will make it absolutely and unambiguously clear, that if the results, after the n period has elapsed, show no or very little improvement, that I will not force her to continue treatment thereafter. That I would give her the freedom to decide for herself after that milestone – not one second before. That strategy would give her a first-hand understanding of everything involved, the opportunity to experience for herself how she handles the treatments and the certain knowledge that her fate is in her own hands from a certain date onwards, which is a definitive victory to look forward to (which is very important for fostering hope), regardless of whether she will live or die. Not at all like the wishy-washy guesstimates that the medical profession so glibly dish out.

    I still don’t understand why you are torn, just because you don’t know the details. You don’t need to know any details, at all; there are larger issues at work here, than the mere details.

    Whether the hospital or state is right or wrong makes no difference to Sarah, the person. I’m not talking about Sarah, the patient. I’ve always wondered why “patient”? Probably, because being one, means waiting your life away for the medici to make up their minds, while draining your wallet. But, I digress.

    On the one hand, you argue that children should not be considered the property of their parents “cause we ain’t inta slav’ry no mo’”, but also go on to say that children are entirely incapable of any logic, reason or thought on any significant scale, so somebody should be doing their thinking and deciding for them. On the other, by your implications, children/the defenceless should rather be the property of the state/caring society(presumably, you and your ideological kin), and based purely on their history/your reasoning, it sends shudders down my spine. Because being such would make them defenceless against the state/you, in no uncertain terms – a complete loss of freedom, a.k.a the libertarian bullshit. In either case, my perspective is from the child’s/the defenceless’. Translated, my view is child/human-centric, not state/you-centric.

    Your argument about child abuse is entirely illogical and absurd. In a case of abuse, the children/defenceless do not, typically, have a choice and the malicious/unpleasant act is perpetrated against them, against their will. And this is against her will. If you say that we are not dealing with her will, but the parents’ then we have a dilemma. Legally, in that regard, she has no “will” of her own. A court found them to be fit parents in every regard.

    So, let us discard legalities and the parents’ will for a moment. The only will she has expressed is to not have further treatments. I understand that sentiment intimately, since I’ve been there. In your eyes, that’s just not acceptable, because let’s face it – according to you, children don’t know anything about anything “important”. However, whether you’re 10 or 40 seems to make no difference to the expression of exactly that will. My will, in terms of content and intent, is identical to hers. In every regard, my will is identical to what she expressed, caused by the same thing, caused by the same type of people with the same intentions, under the same circumstances, with the same outcomes. The only real difference being that I can enforce my will, even against the state and assorted other idiots, such as my parents, who share your sentiments. They still think I cannot possibly decide what is best for myself, because I am still their child.

    In Sarah’s case, abuse is going to happen, whichever way you look at it, whether you like it or not. She is already being abused by the media, lawyers, courts, the precious state and people that think like you. If this child becomes a ward of the state, as you would have it, in addition to all the current abuse, she will be abused by doctors and nurses for an indeterminate duration, spanning months or more likely years, with an outcome that has some statistical probability of either making her life worth living or ending it, but definitely miserable for the duration of guardianship.

    What if this girl adamantly refuses treatment while under guardianship, perhaps by attempting to run away or even violently in her own 10-year old way? Is the “caring nurse” that hails from the “caring society” going to strap her down or hand-cuff her to the bed like a common convict? What if she tries to bite the catheter off the peripheral line? Are you going to put a muzzle on her face? Or drug her into submission? But your intentions are good, so it’s definitely not abuse. If the definition of abuse is loosely doing something unpleasant, degrading or painful to someone against their will, a.k.a. torture (according to some dictionaries), then treatment is most certainly abuse. Oh wait, we haven’t even gotten to the treatment yet… we’ve just begun forcing it into her veins. It hasn’t even kicked in, yet. More abuse to follow.

    Or, she will be abused by a truly terrible illness for a very definite, but short duration and then the suffering ends, permanently, for the victim at least. The only ones that are seemingly not abusing her currently, are her parents, protecting her against ALL the other, current abusers as best they can. The only way that I can see this saga having an ethically and morally happy ending is if Sarah, in and among the seriously limited options, be allowed to choose who gets to abuse her and for how long.

    Dear Phil,

    After what my family and I have been through, there is nothing that you could do or say that would add any burden or offence, at all. For the first time in forever, we are all happy. Only now, that I have distanced myself from the medical professionals altogether, is the quality of my life improving. I go on frequent holidays, I spend a lot of quality time with friends and family, and even though my health is deteriorating slowly, I no longer feel like a microwaved corpse from the treatments. Now, I can actually do the things I enjoy doing. Lying in a bed, hoping that someone would just put a bullet in me already, was not one of them.

    Like stalking zebra on horseback and getting to chill in the middle of a herd of wildebeest. I now live on a private game reserve, I have some horses and generally life is good. It most certainly is better than when I was wrapped in the claws of the medical fraternity. I know and understand that it won’t last forever, but everything has its price. As a bonus and consolation, it won’t last for anyone else, either. This price I pay gladly. Not just for myself, but also for my family and friends, that now have me back as a human being and not just the sickly-looking cancer-guy to feel sorry for and worry about.

    You are still stuck in the rut. Anything in life is larger than just the one thing that we are dealing with right at a particular moment. I am not advocating acquiring less information. I am saying that as much information should be gotten as possible. From all angles. Get the medical opinions, by all means. That is not where the story ends. You speak of the “possibilities good or bad but may be exceptional”. If you believe that from a mathematical standpoint, then you should apply the same standard to clinical trials as well. Accuracy depends on the sample size and section. It is not uncommon for clinical trial participants to be selected for their probable success in the trials. People that may screw the trial’s preferred outcome up by probably dying are usually not invited to the party and are left either untreated or treated conventionally. If you want complete accuracy, then you would have to include every patient, everywhere.

    Much in the same way that Sarah’s parents would have to speak to every parent of every child that has ever died of this cancer. It is not feasible. What I was suggesting is that they find out how the parents of children that have survived and died, comforted their children, how they dealt with their own feelings, how they coped through all this mess, how they dealt with successes and setbacks and the like. They should find out how other parents who faced the same choice, decided it was time to pull the plug on the money making machine that kept the treatments alive and how they dealt with the consequences of that decision.

    Countless support groups exist all over the world, especially in the US, which is I’m assuming your country of residence, because doctors cannot, and cannot be bothered to, fill that gap. There is no financial reward in it. They have better things to do like “save lives”(expensively), because that is the only important thing in the universe, regardless of what else gets wrecked in the process.

    Please, ask the best doctor/”expert” you can find, which is the best way to hold a large, grown man’s head out of the puke bucket for hours on end, because the anti-emetics are just not working. Your “expert” won’t have the faintest idea, because they have NEVER done it, or given it the slightest bit of thought. Hot tip: don’t try holding his head with your hands; they get really tired really quickly… hold his forehead in the crook of your elbow. Even a 40kg child can hold a 90kg man’s head that way, almost indefinitely. The “expert’s” answer: change the sheets and get different medication, when you get around to it.

    If you do not see the value of peer review, specifically from actual peers, then you shouldn’t be visiting this or any other site dedicated to thought or reason. It is, or should be, comprised of people – peers, that interact to learn from each other to attain a higher intellectual state based on reason and thought. In your world-view, RDFRS should have a resident “expert” telling us how it is, because only the “expert” knows anything and we are incapable of thought. We don’t even need a comment section, because what do we lay dummies know, anyway? Thanks, but I’d rather flip to BBC Prime, Animal Planet or the Discovery Channel, if that is all that is on offer.

    It doesn’t matter that you, or anyone else for that matter, thinks she should be given the chance for a wonderful/wretched life, since who knows what happens after she is cured, regardless of what her statistical chances of survival are.

    Personally, I think 95% of people in my country should not be allowed to vote, because they are too stupid to understand what a meritocracy is. The entire country is run by nephews, cousins and liberation-struggle-buddies. It’s a mess. My opinion, however valid, is not going to change democracy. I believe people should pass an extremely stringent exam, before being allowed to have or raise children, since the responsibility is enormous, and so many parents do such a lousy job of it. Even if the course was as simple as Basic Physiological and Psychological Care for Humans. Does that make sense? I think so. I don’t try to force the idea down anyone’s throat. Would it make the world a better place. Probably. Is the constitution going to change? Probably not. Some rights are rights, even thought they shouldn’t be.

    These decisions are not, and should never be, yours or the state’s to make on behalf of anyone. We expect every person to make sensible choices to rule their own lives all the time. Except when it doesn’t suit our particular world view. Then we want to interfere…

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