Kids and chemo: Who decides?
13-year-old Danny Hauser is angry. Though the court-ordered chemotherapy has shrunk his tumor "considerably" after just two rounds, the teen does not want to continue treatment.
"I get really sick when I do it," the teen said during an interview with the Associated Press at his family's farm in Sleepy Eye, Minnesota. "You get so dizzy and I get a headache right away."
Danny was diagnosed with Hodgkin's Lymphoma late last year. Here's his family's take on what happened next:
The Hauser family, like a majority of Americans, have a philosophical alignment with natural approaches to healing. With Danny so unhappy with the treatment, they decided to explore other options more in line with their own belief system. When their oncologist learned they were not moving forward with the next round of chemotherapy, he felt this was medical neglect and sought a court injunction, claiming that there is a 90 percent cure rate in Hodgkin lymphoma with chemotherapy. The judge in the case threatened to take Danny out of the home, put him in foster care and let the state government make the medical decisions for Danny in conjunction with the doctor rather than his parents.
Though the family acknowledges that the tumor has grown smaller after chemotherapy, and doctors said that Danny's cough has improved, he has been breathing more easily and sleeping well, the teen attributes the improvement to a host of unconventional treatments, including vitamin supplementation and dietary restrictions.
His parents had initially rejected chemotherapy for religious reasons, saying it harms the body, and wanted to treat him using more holistic methods. His mom, Colleen Hauser, does not credit chemotherapy for the improvement, but doesn't rule it out, either. "I'm not going to say it's not, but I just want to make it clear that I would like a better plan, a better treatment plan, for Danny."
What struck me in this case is that the parents weren't withholding medical treatment for their teenager, per se -- they were rejecting conventional therapies. They weren't sitting by and letting their son suffer -- they wanted to avoid causing him additional misery. And who wouldn't want "a better treatment plan" for their child? That doesn't sound like neglect to me.
So, I'm wondering: Should authorities take over when a child needs medical intervention and the parents disagree with the methods the doctors recommend? If the child himself doesn't want the treatment, is it still considered neglectful for the parents to avoid it?
Parents, what do you think?
Lylah M. Alphonse is a Globe staff member and mom and stepmom to five kids. She writes about juggling career and parenthood at The 36-Hour Day and blogs at Write. Edit. Repeat. E-mail her at lalphonse@globe.com.

Despite the parents's religious beliefs, the bottom line is that this can be treated. 90% is a HUGE success rate. Why risk losing a 13 year old? I understand he gets sick and doesn't like it, but in 40 years when he is ALIVE and well, he will look back and be grateful.
I believe it is up to the family. Where this boy is a teenager he knows the outcome of what may happen. There is no real proof that doing the chemo is going to get rid of the tumor all together and keep him on this earth until the ripe age of 80. I believe it is quality over quantity and I do not think that what might be ok for 1 makes it ok for all. Let the family make the decision that they want to make and leave them alone.
If the parents and the child want to make such an ill advised decision, then the authorities have to respect that. It might break our hearts to think of a young life stopped short by such a lack of faith in science and medicine, when there is such a good chance this boy could live for a long time. But the family should have the right to decide, not the court system nor the government. I do make the moral judgment that it is neglectful. But I do not wish to hand over moral authority to make such decisions to the government either.
The state has no right to make medical decisions on behalf of its citizens, period. The child doesn't want the treatment, nor do the parents. They are using alternative methods and that is their right.
The state cannot impose it's belief that conventional medical treatment is always right and that other methods are always wrong.
There should be clear standards for neglect - that is when no treatment/attention is being given - but other than that, the state cannot decide the type of treatment.
Adults are welcome to let themselves die; kids--no. He'll just have to recover, grow up, and take up smoking if he wants to die of cancer so damn bad.
As much as I disagree with what the family wants to do, it is their CHOICE to make. The government should not have the right to force them to go against their beliefs. The article said that there is a 90% cure rate with the chemo, well what if Danniy is in the 10% that doesn't get cured. Then he will have been miserable for the last little bit of his life. I think the government should worry about the bigger issues plaguing this country.
Developmentally, this child does not have the tools to make such a profound decision. As a teen, he's motivated by his comfort, and doesn't necessarily appreciate the long term gains here--in pushing through the hard parts of the treatment. And, I agree w/ the post that says that in spite of his parents' medical beliefs, it is not appropriate to leave a risk assessment decision to a child. On a smaller level, if you ask a kid's permission if they want a vaccination, they'll always say no! It isn't a rational choice, it is an emotional one!
I am always afraid when a freedom is taken from us. If the kids body reacts to the treatment in a negative way, why would he continue...makes sense to me. Who says the dr knows better than the kid and his body? Look what happened to Farrah, she tried all the dr's recommendations, and she suffered and still didn't make it. I think each of us have to decide for ourselves, and our own bodies.
Regarding "in 40 years when he is ALIVE and well, he will look back and be grateful." Is it possible that in 40 years he may still have bad side effects
from the chemo (since it can affect good organs as well as bad tumors)?
That's better than dieing now, but maybe there is an alternative now, and maybe he wouldn't die.
And hopefully in 40 years chemo will be considered an old outdated solution. I do not have a strong opinion either way for your question. I know I was grateful when a very painful badly herniated disk was removed from my back 20 years ago. But 20 years later I'm still having trouble walking more than short distances without tripping due to a nerve damaged in the operation.
What if the treatment was 35% successful, would that still justify taking custody and disallowing alternative therapies? This was not a case of parents harming the child, but the parent and child together were making decisions that they felt led to a better quality of life.
13 year olds are not capable of making informed decisions. They are not mature enough...most are still fairly concrete and see the world in black and white.
It's the parent's job to decide what is right for a child, and sometimes that means making them do something they don't want.
I make my 8 month old take naps and she really doesn't want to do that. But I do it anyways. It's what being a parent is all about.
Those particular parents are whackjobs and the state should be involved. No wonder he doesn't want the treatment--his parents brainwashed him into thinking the mystical cancer fairy was going to show up and take it away without pain.
I believe that cheetos cure cancer. Can I choose that for my kid's treatment?
The people who defer to the wishes of the family sound like fools. If two parents behave in a manner such that their conduct will almost certainly cause their child to die, then it is the responsibility of our judicial system to act for the child's well-being. These circumstances are disconcerting for us to learn about, because it is so uncommon for parents to act against the best interest of their child. However, in this case, there can be no argument that the parents' ignorance of confirmed modern medical data, and refusal to accept the results of that data show them to be incapable of caring for their child - simply because they refuse to acknowledge reality. The young man should have absolutely no say in this matter. He is a 13 year old, who barely understands how his hormones function, and clearly has been "brainwashed" by his parents "cult of ignorance" philosophy towards modern medical realities.
Some of the posters here are right on the mark. The parents are religious followers of a former prison inmate who claims he knows best, and standard treatment is not the way. Well, if this was my kid, he'd be getting conventional therapy. I'm not saying it's not unwise to look over some holistic treatments, but I wouldn't trust an ex con with helping to make decisions about how to save my child's life.
Hell NO, the parents can't nix treatment! Witholding a 90% chance cure is CHILD ABUSE! The child is not of majority age--he can't drive, can't sign a contract, can't get married, yet you think he can refuse treatment that can save him? Sure, the treatment may be uncomfortable but his discomfort can be cured by being dead! Wonder how Mom & Dad would like THAT? Then they can snivel and say, "Well, he died doing what he wanted to do..." Idiots!
he's not the government's child! DO we as paremts have no rights to raise, empower, help oour children... if it's all up to the government, why do we house them, give brith to them, educate them... I , for one, wouldn't leave that up to the government... talk of failure across the board....there... hey... give me a break... the parents are investigating all options and they certainly tried.. I don't think they said forget it entirely... is the judge a medical person??? give me a break... the parents are obviously loving, caring & intelligent... they think for themselves... gather info, etc... i give them credit for going above &beyond
I wish it were a given that parents would always rather save their children's lives and health. But it's not, and we may have to let a certain number of misinformed parents sacrifice their own children to expose both the extent and the real root of the problem, and its root in turn - the snake-oil merchants and roadshow gurus that have proliferated in the shadow of dwindling access to medical care.
It is easy to sit here and tell someone else what they have to do, what they have to endure. As a mother of a baby with a severe heart defect, I look at cases like this and wonder what I will tell my son when he tells me he doesn't want to do anymore open heart surgeries. My heart goes out to the family and this poor boy who is dealing with some very tough stuff.
I find it funny that republicans don't believe the government should make decisions or be involved in personal choices until it comes to personal health and then christian ideology should decide.
If the question was about who should pay for the healthcare I imagine we could agree it would be the parents. Either the government should be deeply involved in our personal wellfare (helping us afford it and make decisions, providing a system that allows everyone access to the best) or it should stay out of our lives completely - DECIDE, CHOOSE ONE.
My daughter has an auto-immune disorder that has the potential to kill her. It won't, though, because we make sure she is treated for her disease. I don't care if she doesn't always like what needs to be done. She is 8 and I am her parent, and *I* will make sure she gets the treatment she needs. When she is an adult, if she chooses not to treat her illness, then so be it. It will kill me to watch her suffer and die, but when she is old enough to make that decision, I will allow her to make it. For now, though? No way. There are things I am unwilling to play with, and my daughter's life is one of them. I understand these parents wanting to abide their son's wishes, but they are his PARENTS. It is their job to make the tough decisions until he is old enough to do so himself. Thirteen is not old enough.
I believe that regardless of the severity of the issue, one must consider it another teenage tantrum. Parents have to make tough decisions for the benefit of their kids because they aren't adults. Yet what happens further on in their lives? Kids thank their parents for having made those decisions, for having enforced them and they themselves end up following in their parent's footsteps. I wonder if every kid that complained about how painful it is going to the dentist would have their moms and dads say "Oh well. Maybe his teeth will rot maybe he'll be fine without fillings. No way. It's just common sense and I don't even have kids.....
Personally I'm against modern medicine. Holistic medicine is a much safer route. The reality is that the majority of the country are brain washed to believe in western medicine. Natural medicines have been working for centuries all over the world but are frowned upon and frequently made illegal because big drug companies don't make money off of them. Did you know that in the 70's they realized that smoking marijuana would significantly shrink brain tumors?
Keep in mind that in earlier news reports it was also stated that he is home school and CAN NOT read. Do you really think he's capable of making an intelligent decision that is based solely on what he is told?
I struggle to pay my medical bills every day. I have multiple chronic health problems and I'm in pain all the time. It is obscene that I can be denied the health care I need in the name of saving some health plan money yet a 13 year old boy can be forced to have the health care he doesn't want. This is part of what's wrong with health care in America.
Until a child is at the age of majority it IS a state interest to preserve the life of its underage citizens. Since there is a scientifically approved method of treating this illness with a high recovery rate public policy demands that the life of the child be protected by medical treatment despite his desires not to get it. No 13 year old is capable of making well-reasoned life and death decisions.
oof religion, people are still living in the stone age.
Anyone who agrees with the parents in this case is an idiot. The stupidity, scientiic illiteracy, and willful ignorance of these people makes them unfit parents.
If anything, they should be in prison for child endangerment. Big deal if they're his "PARENTS"--there are loads of crappy parents out there. By the logic of the people who support these quasi-religious morons we should allow people to slowly torture and kill their children over the course of a few months. That's what dying from lymphoma will do, why not cut out the middle man?
Some hollistic treatments work, some don't. Taking vitamins does not cure cancer! When parents make decisions that are not in the best interest of the child then the government should take over. When he is 18, if he still has cancer or his cancer comes back, then he can make the decision.
Some hollistic treatments work, some don't. Taking vitamins does not cure cancer! When parents make decisions that are not in the best interest of the child then the government should take over. When he is 18, if he still has cancer or his cancer comes back, then he can make the decision.
If he was a diabetic, and didn't feel like having insulin shots, should we let the parents say, "Ok, no more insulin" and watch him die? How is this different? I fail to see how this is big mean ol' government interference when it is simply the enforcement of laws requiring you not to neglect your children.
I am an ardent supporter of science and medicine, however - it is not the state's place or authority to impose such treatment on its citizens, regardless of religious affiliation. My religion tells me that doctors are good, medicine is good and science is a marvel. But frankly, I am of the quality vs. wuantity school of though.
Two years ago, I had a miscarriage. And in the week leading up to it, I was relieved when it finally happened. I spent more time undergoing what started as uncomfortable and became downright painful tests and ultrasounds (with a probe, not the belly rub) to figure out what was going on (I already knew). Hours in waiting rooms, shuffling from center to center, lab to lab...only to be told the day that it happened that everything was OK and fine and to go home.
That night, I was in ER in an out-of-network hospital because it was the closest facility, losing the baby and in physical and emotional anguish. The emotional part would have been made better had I not just spent every day that week in one ER or another, one lab or another, being ferried about and reassured that nothing was wrong.
The aftermath was worse, suffice it to say that procedures weren't done and deemed not needed and bad things resulted.
So can I understand the family's - and boy's - anger at this imposition? Yes. Absolutely. If a person deemed competent does not fare well emotionally under such arduous treatment - and chemo is no picnic - then he or she has zero quality of life. Why should you impose such treatment on someone who doesn't want it? It's draconian at the very least and all parties involved are aware that death may result without the treatment. Leave them their quality and leave the state government out of this area of the citizens lives.
The only exception I would ever consider to this rule is in such a case where, as in Oregon (I think), an infant died of wholly treatable pneumonia and the treatment regimen was simple antibiotics.
Now that I think of it, where are all of these ardent supporters of medicine when vaccines are discussed? Where was the hue and cry of abuse when, in the early 1990's, Whooping Cough reared its head in Colorado because of an enclave of families who were opposed to vaccines on a very non-religious account? The end result was that a newborn, who was not part of this enclave, died from being exposed to it before it could be vaccinated. Hm. Talk about a wild double standard.
The voices of reason about vaccines (vax if you can, IMHO) tend to be drowned out by the media giving inordinant air time to scare mongers and pseudo science.
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About the author
Barbara F. Meltz is a freelance writer, parenting consultant, and author of "Put Yourself in Their Shoes: Understanding How Your Children See the World." She won several awards for her weekly "Child Caring" column in the Globe, including the 2008 American Psychological Association Print Excellence award. Barbara is available as a speaker for parent groups.
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