22 responses to Hospital Fights Amish Parents Over Daughter’s Chemo

  • Hosp. Fights Amish Parents over Chemo

    I can sympathize with this family as I, too, am witness for the past 3 1/2 years of watching my husband battle colorectal cancer, with many doses of various types of Chemotherapy. It has stopped the growth of his tumor, but most times with side effects he suffers with, to this day. It has prolonged his life, but at the same time, his quality of life is not what it used to be. He does have good days and bad days, and does take breaks from his chemo, to let his body “restore” itself, you might say. For example, he is off of his chemo at this moment, as we are taking a 3,000 mile trip, in few days, (by car) to visit family and friends. While OFF chemo, he will be able to once again enjoy the trip — not perfectly, but better than if he was continuing the chemo.

    While on chemo, he does suffer from numerous bathroom trips, pain in legs, neuropathy of his feet, and tiredness. Since he has been off of his chemo, he has less pain and has more energy — once we get back from our trip, he will then go back onto his chemo regime.

    Every family must weigh the good/bad of chemotherapy, and decide which is best — it’s a very hard decision to make, and one always has hopes of a cure, and in most cases the survival rates with chemo increases. Every individual is different and every case of cancer is different. No two alike.

    Without chemo, death is certain in a matter of time……With more and more research and new findings, there is more options and new drugs available that have promising results.

    At the same time, I truly wish they would put more research into homepathic remedies, because these are the “natural” ways of healing — The only reason I can see that research continues to develop new “drugs” is the pharmacuticals would go BROKE, if someone found a CURE with homepathic properties!! As with most things, “money” is the purpose behind our healthcare — sad to say – but mostly true. As an example, Chemo drugs are VERY Expensive — (example – one of my husband’s monthly supply of pills was $10,000!)and if you are lucky enough to have insurance, the Insurance picks up most of the expense — thus, the “speciality” pharmacutical manufacturers of the drugs are the one raking in the dough, as well as hospitals, doctors, etc.

    The ultimate decision on ANY medical decisions, should be the patient’s or patient’s parents, if child is underage — the fact that Dr. wants to take “guardianship” is “WAY OVER THE TOP” and out of line!! Dr. needs to be reminded that patients do have “patient rights” when it comes to treatments! Sounds like the family needs to bring in some legal advise.
    SharonR

    Hospital Fights Amish Parents Over Daughter’s Chemo

  • You have rights

    This country was founded on the grounds of religious freedom. We may not agree but this family does have a right to stop treatments if that is their belief. In this way they are no different than Christian Scienctists.

    Yes, chemo may well extend the Girl’s life and it might even cure her but at what cost? Is life always such a priority that no matter the cost you have to prolong it? What about the girl’s choice and her parents?

    When my dad was diagnosed with terminal cancer he signed a letter that said no heroics were to be taken. He didn’t want to prolong life to the point of misery for one and all. Of course it hurt when I was first told. I didn’t want my dad to go away. But when the time came it was very peaceful and I’d like to think that dad was pretty happy we were all there and just very accepting of his wishes. We didn’t have crash carts. We didn’t have someone pounding on his chest or pumping useless drugs into his system.

    We may not have the same belief system but we do want a pain free simple passing I’m sure.

    Plus it also sounds like her cancer has metastasized. That most definitely lowers her chances of survival no matter how hard you fight.

    It’s time for this doc to remember his oath of FIRST DO NO HARM. It isn’t about him or his ego. It’s about a little girl who wants to be able to live life on her own terms. Whether that means a shortened lifespan remains to be seen.

    Hospital Fights Amish Parents Over Daughter’s Chemo

    • I don't think this is about religion

      What caught my attention is that they first agreed to the treatment before withdrawing. So it seems that this is less about a religious argument and more about not wanting to endure the pain and trauma of the treatment, having seen it firsthand.

      They have returned to a more familiar mode of treatment which I doubt has the clinical backing of this course of treatment. I hope it is not a case of them backing away right at the lowest point, as again they were agreeable at first.

      That makes this different from the rare cases where Amish have objected to a treatment on religious grounds, such as conservative Amish who have refused heart surgery for their children on the grounds that stopping the heart is only something God should be able to do.

      http://amishamerica.com/amish-baby-heart-surgery/

      You pose a good question–”at what cost?”. The modern mindset is to preserve life for as long as possible, while they may simply have a different calculus as to how hard to fight to prolong life, no doubt more concerned about the afterlife.

      However this is more striking because it is a very young person involved who could have many years ahead of her, not someone who is at the end of life.

      Hospital Fights Amish Parents Over Daughter’s Chemo

  • New York State of Mind
    Comment on Hospital Fights Amish Parents Over Daughter’s Chemo (August 26th, 2013 at 09:09)

    This is kind of a bitter subject with me as my brother had throat cancer and went through chemotherapy. He got so he couldn’t eat and they put a tube in his stomach. After the chemotherapy he could eat normal again, but very slow. It would take him hours just to eat say a hamburger. They told him it was in remission. Well, it wasn’t in remission and he passed away. If we knew then what we know now, our family would have talked him out of it, but we believed the doctors. If I were to get cancer, I wouldn’t go through that chemotherapy. When my time comes, the Lord will take me – chemotherapy or no chemotherapy. I agree with the Amish parents. Let their daughter enjoy what life she has. You never know, those herbs might do better than all of medical science.

    Hospital Fights Amish Parents Over Daughter’s Chemo

  • I had a brain tumor as a kid and what my parents went through was a nightmare, constant check ups radiation cat scans M.R.I.’s. a sick kid who needed alot.
    Now knowing what I know about the Amish, that life would be very hectic for them.
    I think for them a wholeistic aproach would be in their best interest and also it is in Gods hands now and that is their way of life, as long as your faith is strong and I know thiers is, they are totaly comfortable in that decision, Realy if you truly know God, you know that eternal glory awaits.
    So my opion is for the government to step out and let the Amish be Amish.
    May Gods healing hand be on that family. Amen

    Hospital Fights Amish Parents Over Daughter’s Chemo

  • Only God knows the number of Sarah’s days. If the parents have made a humanly “wrong” choice in discontinuing chemo God is still the worker of miracles.

  • The quotes “very treatable illness” and “about 85% five-year survival” are generic phrases about leukemia that McGregor has given to the press and have absolutely nothing to do with this particular case. If McGregor used those phrases under oath to describe any individual case he would be struck by lightening.

    It looks to me like the hospital is manipulating the press to try and influence the outcome of their appeal.

    Hospital Fights Amish Parents Over Daughter’s Chemo

  • My friend’s/boss’s 5 year old grandson has leukemia, diagnosed at age 3. I’ve followed (via a blog the family maintains) his progress (which can seem very minimal at times) with chemo, transfusions, and all the side effects (hair loss, nausea, compromised immunity, which, with 3 older siblings in school, has led to his being confined to his home, to his room, for months out of the year). His mom is a nurse, Dad is a surgical assistant, so they know/have seen similar cases. It’s like a roller coaster ride, for all involved. The community has come together to raise $ for the outrageous bills, but there’s only so much anyone can do. We’re only human.

    I can understand the parents’ fear, and the girl’s begging to be taken off chemo. I don’t know how I could take seeing my children suffer, yet I would hope I could help them ease their way through the initial pain/discomfort, if the medical profession could assure a longer life, and a good quality of life. If there are other children in the family, it can be a more difficult decision.

    The Amish aren’t fools, and their belief in God prepares them for accepting death (“God’s will, not ours”) better (in my opinion) than most of the rest of us. I hope the “English” courts can take that into consideration rather than have such a knee-jerk “give her chemo” reaction that ultimately will ensure more suffering on the girl’s (and family’s) part.

    I’ll pray for all involved, and hope I’m never faced with a similar decision.

    Alice Mary

    Hospital Fights Amish Parents Over Daughter’s Chemo

  • I know of a similar story. It was an Ethridge, TN boy (Swartz. Amish) with burns on his hands. They attempted conventional treatment (skin grafts), which did not take. So with wounds on the boy’s hands, and now thighs, they told the family they must try again. The family balked. They wanted to try the B&W ointment/burdock leaves treatment this time. The surgeon put the boy’s hands in casts so they couldn’t get to them to do so, while threatening to involve having DCS remove the child from their custody in order to do more skin grafts. They just left. They went back to their community and “laid low.” They never showed up for their next scheduled surgery. Nothing ever came of it (this was probably 1 1/2 years ago). I wonder if the boy has good use of his hands now.

    It’s tricky. If medicine could guarantee a good outcome, then I would be inclined to think that withholding treatment, or opting for something without a guarantee, would be negligent. But medicine cannot make that promise.

    Also, if the State is going to become involved in these types of affairs – removing children to force one treatment over another, when neither is guaranteed to work, then the State might as well control exactly every way a parent cares for their child – What they feed them, how they dress them, who may care for them, so on and so on.

    Hospital Fights Amish Parents Over Daughter’s Chemo

    • If a parent leaves their child at a state licensed daycare the state does control what they eat by the menu, what they wear such as how they are dressed in an infant room, what range the temperature of the rooms must be, and a caregiver must continue to have a certain amount of hours of “training”, some classes of which the topics are almost laughable. One DHS approved class I took was about foods for infants and toddlers, and the instructor suggested giving foods rolled into small balls as “finger food”. Uh, that would be a choking hazard according to licensing standards….I no longer work in the field as I couldn’t tolerate the power DHS has, and how little recourse a provider or family has when DHS is involved. I fear that soon DHS will be involved in every family that has children.

      Hospital Fights Amish Parents Over Daughter’s Chemo

  • No more suffering

    As a pastor I sat beside the bed of a woman who was suffering so badly from numerous chemo treatments and trial medicine for cancer. All she wanted was to die and be pain free. However, her husband and family insisted she continue to fight. Didn’t seem to matter that her life consisted of pain, sleep and throwing up, nothing else. Fast forward 2 years and my husband was diagnosed with stage four tongue cancer. The treatment for head and neck cancer is the worst treatment there is. He lost all saliva, the ability to eat, all muscle (he looked like a Hitler victim) and any quality of life. After treatment he suffers from no saliva, constant thick mucous, unable to eat, weak and constantly tired. His cancer spread to his lungs 3 months after treatment and he refused any more treatment do to quality of life. He ask his doctor what he would recommend to his brother in the same situation and he said, no treatment so apparently some doctors have compassion. They gave my husband less than a year. We then turned to nutrition and a holistic medicine and continued to pray. Two years later he is still alive, pain free and enjoying the one thing he loves, fishing. So my suggestions to these doctors trying to force misery on this child, BUT OUT! You are not God.

    Hospital Fights Amish Parents Over Daughter’s Chemo

  • Nancy Consolo
    Comment on Hospital Fights Amish Parents Over Daughter’s Chemo (August 26th, 2013 at 12:47)

    Chemo- Never Again

    That poor child. I have Multiple Myloma and had Chemo twice. When I came home from the hospital after 3 months because of the side effects, I said never again. I lost 43 pounds (good thing I had some fat on me) my immune system seemed to disappear, I got C-Diff and had diarrhea for a couple years. Oh did I mention I was also in a wheelchair? All these things were far worse than the Chemo. My blood numbers are going downhill again and I told my Doctor “No More Chemo” I’m out of the wheelchair and have gained a little strength, but I choose to have a “natural” death. The side effects were not worth the misery. But I am 78 and that child has her whole life ahead of her. But they should go with their heart and make that child as happy as possible. Let her spend her brief time not suffering from the Chemo because she will die anyway. I truly think Cancer would be cured if it were not so lucrative. Cancer is a big money making machine. I vote for the parents in this.

    Hospital Fights Amish Parents Over Daughter’s Chemo

  • >>”Her parents at first consented to chemotherapy, but later rejected it in favor of “natural” medicine — including various herbs and vitamins.”<<

    The parents are not refusing treatment; they are opting for an ineffective treatment of herbs and vitamin remedies. They are likely being scammed by the purveyors of this medical quackery who gladly sell this "natural medicine" and trash talk their competitors – legitimate doctors and hospitals offering medically proven treatments.

    I think the age of the patients also has something to do with how people feel. I understand when an elderly person might choose to sign a living will and make clear their desire not to receive heroic treatments to prolong life. They've already lived a long life. On the other hand, I get angry at those parents who make the same decision on behalf of their minor children. The children have a potential full life ahead of them, why not offer them the best treatment available.

    Hospital Fights Amish Parents Over Daughter’s Chemo

  • Cancer treatment

    This posting brought back a lot of memories for me. My wife collapsed in the bedroom hallway in 1994. She was being treated by her doctor for tendonitis and then fibromyalgia. Turned out all the pain in her back was being caused by a lymphoma tumor prying her spinal vertebrae apart. Within a week after collapsing she was totally and permanently paralyzed from the armpits on down. I learned how to care for her. Mark helped out. I’ll never forget when Charline went through radiation and chemotherapy. She lost at least fifty pounds; she lost all of her hair; she lost her mind (temporarily). There was a sign on he wall of her hospital room warning the nurses and aides to wear gloves and never to come in contact with the chemo chemicals as they were highly caustic. These were the same chemicals that they were injecting into Charline and sending coursing through her blood vessels, including through her brain. No wonder she had temporary dementia. Her resistance was so low that we had to wear masks and gowns to visit her. Mark and I were there every day. I would be there during the day and Mark would come in the evening after school. And every week that she was in the hospital there was a van load of Amish came down from Belle Center to visit her. They didn’t even know her. They only knew Mark from his going up to visit the Amish schools and making friends up at Belle Center. When she got out of the hospital after three months there, a van load of Amish men from Belle Center were there for us. They built wheel-chair ramps for our exterior doors. They widened our bathroom door so it was wheelchair accessible. I know these acts of Christian love extended to our family were part of the reason that Mark decided to join the Amish after retiring from teaching. Charline lived a further four years after her initial collapse. She remained paralyzed. I learned how to care for her at home. Catheterizing, bowel program, bed sore treatment, etc. Mark took care of her leg manipulations to keep them from atrophying and her feeding tube feedings. Oh my. We had Charline for another four years but it was so hard on her. She was always very modest and had a dignity about her. Now, she couldn’t even care for the most basic bodily function. Her quality of life was not good even though we did the best we could. Finally, the cancer came back. The doctor said the chemo would kill her before the cancer if we tried to treat it, again. She passed away at home in 1998. Amish youth came down to sing for her viewing. Amish friends, as well as Mark and my late son, Jeff, carried her to her last resting place. A very hard time or us. I can feel for the parents of this little Amish girl.

    Hospital Fights Amish Parents Over Daughter’s Chemo

  • Naomi Wilson
    Comment on Hospital Fights Amish Parents Over Daughter’s Chemo (August 26th, 2013 at 14:25)

    worst nightmare

    Did I hear correctly that the hospital had filed for custody of the child? What??? I just cannot comprehend that it is possible for parents to lose custody of a child so easily. I have young children. I just can’t imagine.

    On another note, for a very inspiring story of someone who defeated lymphoma through natural means, without using any chemo, google “Jerry Brunetti” “Food as Medicine.” It’s a really nice video lecture.

    Hospital Fights Amish Parents Over Daughter’s Chemo

  • One more vote against Chemo

    My mom was diagnosed with three different cancers over a 15 year time span. The first was a skin cancer easily treatable by removal of the affected area. The second was breast cancer. She opted for a lumpectomy, went for radiation treatment, and took prescriptions orally at home.

    The third was pancreatic cancer. They could not remove the whole tumor as it encircled a major blood vessel. She was 72 by now. Dad encouraged her to do the chemo. This time I believe it was a bad decision as she already showed signs of dementia which when “chemo fog” was added put her in a state where she could barely remember herself and was heartsick on the occasions where she had to ask others if she had kids. By the time she died, I’d spent close to 9 months mourning the loss of my mom already.

    I say all this to state each of us or a minor’s guardians should exercise the right to decide for ourselves and our children how best to face a medical crisis.

    Hospital Fights Amish Parents Over Daughter’s Chemo

    • I don’t think this should be a “chemo vs. no chemo” discussion. People need to work with their doctor for a good treatment plan, which may or may not involve chemo. Getting a second opinion to learn about different treatment options and their effects is one thing; entrusting a quack who offers to sell you a miracle cure is quite another.

      When children are in a medical crises, I have issues with parents who make decisions that go absolutely against the child’s own life. To take an extreme example, I think we all would agree if I child was injured in an accident and bleeding, parents should immediately perform first aid or get help. Doing nothing or saying “This must be God’s will” would be detestable courses of action. Likewise, I don’t think it is acceptable for parents to make choices that will clearly lead to their child’s premature death.

      Hospital Fights Amish Parents Over Daughter’s Chemo

      • Sara Mandal-Joy
        Comment on Hospital Fights Amish Parents Over Daughter’s Chemo (August 28th, 2013 at 21:46)

        I have some frustration with a few of the comments to this article, who seem to think that anyone using herbs/vitamins/alternatives are ignorant folks being “taken” by quacks. Herbal treatments for all illnesses are thousands of years old. There are people well trained in what is available, what will work and won’t, and who will often offer you their wisdom for no charge. Most of what is needed can be gathered/grown yourself, or ordered from a bulk herb store, NOT fancy packaged way too expensive things.

        Amish are not ignorant, and not easily fooled. AND some know/study the ancient traditional paths of healing. Others know who to turn to for that advice.

        Our culture is so so so brainwashed that only “conventional” AMA certified protocols are the correct ones, and anything else is quackery. MANY times the AMA shows the greatest ignorance in refusing to even consider anything other than their highly expensive and toxic drugs. \

        Amish friends of mine have relatives who have had their children taken away for not agreeing to treatment they could not in good conscience agree to. As a result, the Amish folks I know just give in, when it comes to minor children, to prevent the child being taken. But it shouldn’t have to be this way. They have had to see a newborn put into an isolation unit, not able to hold the child or bring her home to her community to spend her last days with love. Two weeks later, and thousands and thousands of dollars later, the child dies in the isolation unit, never held and rocked in her parents’ arms till after she has died. This is NOT okay. Parents must be allowed to use their own wisdom and conscience and choose what is best for their own children. Sara

        Hospital Fights Amish Parents Over Daughter’s Chemo

        • Sara, to be clear, I have no issues with people taking vitamins or growing and experimenting with herbal remedies. That’s fine. In fact, the vast majority of what we use in modern medicine comes from natural remedies. Over the years they’ve been studied extensively and we know exactly how and why they work and what dosage is optimal.

          However, I have BIG issues with people or organizations selling remedies or treatments which they know have NO proof of working. The QuackWatch article explains how many of these scams may APPEAR to work even though they don’t.

          http://www.quackwatch.org/01QuackeryRelatedTopics/cancer.html

          It is downright naive to ignore the fact that alternative/natural treatments are a BIG business and there is a LOT of money to be made hawking unproven treatments. And far from being oppressed by the medical establishment, purveyors of herbs and remedies in fact have been quite adept at carving out protections for themselves from being sued or from having to show any evidence their treatments work.

          Hospital Fights Amish Parents Over Daughter’s Chemo

  • Comment on Hospital Fights Amish Parents Over Daughter’s Chemo (August 26th, 2013 at 22:28)

    If this family thinks chemo is painful, watching her die from leukemia will be many times more painful Sorry but that is my feeling from watching many parents lose their children to cancer. My son has brain and spinal tumors. In fact, he just started chemo again today for a relapse. Cancer is a horrible disease. I really do understand withholding treatment when the survival rate is very low. However, most leukemia is very much survivable. 85% survival rate is accurate for standard risk leukemia. Does the treatment suck? Yes. Is it very long? Yes. 2+ years for girls. Yet the survival rate is very high for leukemia. This girl could go on to live a very long and happy life. It is sad she is not getting at least a chance.

    Hospital Fights Amish Parents Over Daughter’s Chemo

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