Parents sue over cancer treatment

[emad]

Jennifer Dobner in Salt Lake City
Wednesday July 20, 2005
The Guardian

The parents of an American boy once at the centre of a custody battle over chemotherapy to treat a cancer diagnosis are suing Utah state, its child welfare system and hospital doctors for allegedly violating their parental rights.

Daren and Barbara Jensen claim they had the right to direct care for their son, Parker, and to refuse medical treatments, according to court documents filed yesterday.

They say the state violated those rights in 2003, when it sought custody of then 12-year-old Parker to force medical care for him. He is now 14 and appears healthy.

The parents were accused of medical neglect when they refused chemotherapy treatments after Parker was diagnosed with Ewing's sarcoma, an aggressive form of cancer.

http://www.guardian.co.uk/usa/story/0,12271,1532152,00.html

[northzax]

1. sigh. I know I should stay out of this

but on one hand you have the right of the child to health care, and on the other the rights of the parents to expose him to abuse. I don't know which side to fall on, since one makes me a child hater, and the other a misogynist. So I will err to the First Amendment. Pay the people, it's their right, as the legal guardians of the child, to refuse medical care on his behalf, just as it was Michael Schiavo's right to refuse medical care on his wife's behalf.

[DiverDave]

2. Once again we see that

CHILDREN have no rights, whatsoever.
Jail ANYBODY that refuses treatment for kids.
Did anyone think to ask the CHILD if they wanted to die?
OF COURSE NOT!!
They have no rights, you see.

[northzax]

3. hey, yesterday I said that we needed to get

children out of these siutations and was resoundly called a misogynist. so you can't win.

But no, the rights of parents supercede those of children. There is no right to a certain medical procedure. THAT DOES NOT MEAN that the parents don't have a responsiblity to provide the best medical care avalaible for their child, but that is a moral and ethical responsbility, not a legal one.

[DiverDave]

4. I don't care what anybody calls me

Kids have RIGHTS, especially if it comes to DIEING...
I cannot believe anybody would withhold treatment to ANYBODY, whatever the age.
Tell you what, if I could get the kids away from the idiots refusing treatment, I WOULD.

[northzax]

5. but what if the kid is refusing treatment

and his parents want the treatment, who gets to decide?

[DiverDave]

7. Painting me into a corner, huh?

I think that most kids would chose to live.
If you would have pointed out, that without treatment, to me at 12, I wouldn't see 15...I would have taken the treatment.
I can never understand why people would let a child die...
I have a friend that has juvenile diabetes.
His cousin died at 13 because her parents refused to allow insulin to be administered to her.
I SAW the effects on him and his parents to the senseless death.
My friend is 47 now, and his cousin is dead.
Sorta clouds my judgment in these matters.

[northzax]

11. and I knew a boy

who refused chemotherapy after three rounds so that he could live and die in peace. most kids would choose to treat the disease, as most parents would. THe whole point of rights is to protect the ones who would not do what we think they should do.

[Debi]

8. What if the treatment provides worse results than denying treatment

What? They're professionals, so we have to trust what they say? Take this pill, no I mean this pill, no I mean go under this machine, no, try this excercise...when does it end?

[DiverDave]

10. Let's see...

If you don't give treatment, he dies.
If you do give treatment, he MAY live.
Which would YOU CHOOSE??

[Debi]

13. Did he get the treatment? Is he still alive?

I didn't see that in the article.
+++++++++++++++++++++++++++++++


"They're trying to kill me with chemicals"

-- Parker Jensen

from: http://www.patriotsaints.com/MyChildMyChoice/cases/ParkerJensen/index.html

++++++++++++++++++++++++++++++++++++++++++

TESTS SHOW PARKER JENSEN DOES NOT HAVE CANCER
Sep 25, 2003


Parker Jensen says he's free of cancer and wants the State of Utah to leave him alone.

The 13-year-old boy and his parents held a brief news conference today in Utah to announce the latest tests, taken at Saint Luke's in Boise, show he does not have cancer.

The Jensens have been fighting a state order to have Parker go through chemotherapy. Both Daren and Barbara Jensen fought tears as they lashed out at the state. Daren Jensen says he felt like the state was "ripping apart" his family by ordering the chemotherapy.

The Jensens did not discuss details of the latest tests; they only said the tests showed Parker is healthy.

http://www.kpvi.com/index.cfm?page=nbcheadlines.cfm&ID=15115

[NNguyenMD]

15. Ewing's sarcoma doesn't just disappear out of thin air

ask anyone who's been treated or is being treated for it at any children's hospital.

[Debi]

16. God forbid it be a mis-diagnosis.

The kid is still alive and has not received treatment.

[NNguyenMD]

19. if it was a misdiagnosis then they really should have sought a second

opinion at a difference cancer center.

Consultations from different oncologists at differenct centers typically aren't that difficult to obtain, at least in the children's hospitals where I have worked at which include St. Jude Children's and Childrens Hospital of Los Angeles.

[Debi]

20. They did - that's how they determined the mis-diagnosis

please take the time to check some of the other links. This was a knee-jerk decision by the physicians and Courts in Utah.

[NNguyenMD]

25. I didn't see anything in the guardian article that suggests they consulted

other cancer centers.

BTW Healthy and asymptomatic are two VERY differnet things. Just because the kid doesn't look sick doesn't mean he isn't.

[Debi]

27. By the argument of your previous posts the kid should be dead by now

I guess doctors are never wrong :eyes:

[NNguyenMD]

31. quite the opposite, I said that the cancer was insidious and

by the time it produces pain or symptoms it is often too late. It is quite possible that he is asymptomatic (without symptoms). Usually if you pick up a cancer in an asymptomatic patient, its very good news because you're likely to get an excellent prognosis with treatment.

He may LOOK healthy now, and he may actually be healthy maybe you're right he doesn't have cancer, but if he still has the sarcoma then it will have spread very aggressively by the time it produces any type of pain.

If the tests, bone scans, and biopsies today are all negative, then I salute you, the boy does not have cancer now.

I just find it funny that the lawyer for the boy wouldn't comment if the boy was treated for cancer in the last two years.

[Debi]

35. You do realize that this case is bigger than 'if the boy was treated'

Rather than giving the parents ANY options, other than aggressive chemotherapy, the initial physicians and the State of Utah chose to attempt to take the child away from his parents.

http://www.4utah.com/local_news/local_headlines/story.aspx?content_id=354A1B10-05C2-4B5B-AE93-9BEBA5BC2287

[NNguyenMD]

37. from the link that you just posted

"The parents then agreed to a round of tests by an Idaho oncologist, and to abide by his treatment recommendation. That doctor also recommended chemotherapy, but the Jensens maintained the tests did not show signs of cancer in Parker's body. Doctors said the blood tests could not detect microscopic cancer cells. "

Ah so then there was a second opinion, and the same recommendation as well.

But I can understand why the parents were so reluctant. Its the same idea as patients who don't make lifestyle changes until after they get a heart attack, I don't feel sick so maybe I'm probably just fine. Maybe the kid doesn't have cancer, maybe he does, the doctors in this case were probably just trying to play it safe than sorry.

Should the state still force chemo on him against the parents will? I personally think that they could have done a better job of communicating with the parents of their uncertainty and offered to monitor the kid periodically. You're right in that the hospital still did act irresponsibly in this case.

[Debi]

38. I don't want to keep pressing a point,

but the doctors in the second test (that the parents got after they fled Utah) basically said, "We can't find it, but it could be there, so we better do chemotherapy". If that's the case, we might all have cancer that can't be found so we should all have chemo to make sure that we don't have cancer.

I appreciate that you are in the medical profession. I hope that you decide to listen to the parents of your patients and not assume you are always correct just because you are a doctor.

Good luck on your MD.

[Crunchy Frog]

6. If the rights of parents supercede those of children

then I guess parents also don't have the legal responsibility to provide children with food. Moral and ethical maybe, but not legal. I guess if they really wanted to, they could prostitute out a young daughter as well. It's their right as parents.

This isn't really comparable to the Terry Schiavo case, as she was deemed to be medically hopeless, while this kid obviously was not. But hey, he's a kid, so I guess that's not important. He's property until he turns 18.

[DiverDave]

9. He's property until he turns 18.

Ding,Ding,Ding.
We have a winner, folks.

[northzax]

12. ahh, so you're comparing controversial medical treatments

to food and water? and yes, the parents in the article had a doctor telling them something different. The boy did not have the typical symptoms of the disease he was diagnosed with. Why is it that the State gets to determine the appropriate medical treatment? Who decided which cases the state can take over, and which ones they can't?

it's a blurry, slippery line, isn't it?

as for the Schiavo case, there were doctors on both sides of the issue, weren't there? I certainly am not qualified to judge which ones were right or wrong, I'm not a neurologist. So Micheal Schiavo took the opinion from the doctors he trusted, and made a decision for the person in his care. These parents tried to do the same thing.

you cannot have it both ways.

[NNguyenMD]

17. yeah but the doctors who supported Michael Schiavo demonstrated in a court

of law with evidence that they could substantiate that Terry was PSV. The other docs couldn't do that, so the religious conservative judge of Clearwater sided with Michael Schiavo.

If you're not a specialist in these kinds of cases, like Dr. Frist is not, it really is best to leave it to the professionals who hold the most convincing evidence of whats going on.

There are many types of cancer, pancreatic for example, where there are little symptoms until the cancer as spread to an area where it would cause pain. Some of these diseases are so insiduous that it often takes a car accident, or sports injury for a tumor to be picked up as an incidental finding. Cancer that is painless and doesn't cause symptoms are the worst kinds of cancers out there, because people usually aren't able to find out until its too late.

There are a plethora of bone scans, biopsies and tests to determine if the child has Ewing's sarcoma. Its is the most common type of Child age bone cancer. I suspect that these physicians aren't just making this stuff up . The parents should listen to what they have to say and see their evidence that they are presenting more clearly.

[northzax]

30. none of that answers the point

that a person can, in fact, refuse medical treatment, correct? I'm guessing that MD is real, (or that you watch a lot of ER :)) and that you have had patients leave AMA? unless they are an active danger to themselves or others, you can't confine them. The State of Utah forced treatment on Parker. They commited him to a hospital and forced chemotherapy on him, against his legal guardian's wishes. Without medical testimony or allowing the parents to seek even one second opinion from an outside source. He has no trace of ever having the disease, even Utah's doctors say he made a miraculous recovery, it's like he never had it in the first place.

The state cannot arbitrarily overrule the medical decisions of a citizen unless that person is judged to be mentally incompetant. They can deny access to state facilities, like schools, for non-immunized children as a public safety measure, but they cannot force you to take medication against your will.

[NNguyenMD]

33. well thats the million dollar question, what was the second opinion if

there was any? (MD is pending btw, I'm in med school)

If they weren't able to get a second opinion from another institution or facility then the hospital was just shooting itself in the foot. Even if the diagnosis is right, I dont' see why it would hurt them to get one. So maybe everyone on this board is right, I've never heard of a cancer institution so enthusiatic about giving a kid chemo.

The state CANNOT force medication for any reason onto adults. The Schiavo case never questioned that right patients have, it only questioned who has that right if the patient is deemed mentally incompetent, the parents or husbnad? When it comes to children things get complicated and its not always "father knows best" especially if the father doesn't like his doctor and won't listen to a word the doc is saying.

Thats all I'm saying, parent's don't ALWAYS know whats the best medical choice for their doctor. I agree with eevryone on those board who says these parents should ahve been able to get a second opinion. If they were denied one then the hospital is wrong.

If the hosptial was dumb enough to let the situation blow up to these kinds of proportions, then maybe they were dumb enough to misdiagnose the kid. But until someone gives the kid a full workup for cancer by an independent examiner, and there is no evidence that the kid got chemo in last two years, I have my doubts with these parents too.

[LeighAnn]

18. Jail ANYBODY that refuses treatment for kids? Even psychotropic?

Slippery slope there, pretty soon you'll have parents going to jail because they refuse a doctor's orders to put their preschooler on Prozac.

I'd just as soon these situations be handled on a case-by-case basis, a lot of times in serious situations the man or woman in the black robe does a pretty good job of sorting out the facts and doing what's best for the child in question.

Let's not have any blanket "Do what the doctor says or you're going to jail" laws.

[NNguyenMD]

22. look, out of defense of health professionals doctors don't do these things

to act like total pricks, at least not all of them don't. Doctors and hospitals have these powers because they're trying to help their patients get better. They're not all going to force your kid onto prozac if they don't like it. In all likelihood you'll probably get to drop your kid's prozac, and the next time you see the doc they'll ask how the kid has been doing since stopping medication. If things got worse, well then what can I say stopping meds didn't work. What do you want to do now?

Not all doctors are power tripping assholes, and likewise not all parents are the perfect ideal patients who listen to what their doctor has to say. I've been in lots of situations where the doctor I trained under had their diagnosis questioned, and the doctor happily suggested they seek the opinion of a second physician.

But what happens if that second physician agrees with the first one? At that point maybe there is something that they are saying that you're not listening to. Its those parents that these laws are designed for, the ones who refuse to listen no matter what you say to them.

[Debi]

26. Instead of allowing the parents to get a second opinion

the doctors immediately went to the Court's to request the State of Utah obtain custody of the child in order to begin treatment.

Without allowing the parents to get a second opinion.

[cpamomfromtexas]

21. I think the assumption is that standard treatment works

We all know cancer should be cured by now. But with a system where they get paid whether you live or die, what's the incentive to CURE?

With the FDA, med schools, and everyone else at the mercy of big pharma, it's a wonder we're all not dead. they want everyone on their $250 a month "treatments" till we're really old anyway.

After celebrex and vioxx (I took both), I've sworn off the med community.

Does anyone know anything about cesium chloride as a treatment?

[Debi]

14. The doctors in this case were wrong

The parents (and the child) did not want the treatment because they did not agree with the diagnosis. The entire family had to go to incredible extremes to determine that the child did not have cancer and did not need the treatment prescribed by the doctors (and the Court).

Does anyone know what happens to a healthy person who receives Chemotherapy treatments? I don't.

I do know that if I disagree with my child's physician about a diagnosis and treatment I should have the right to get a second opinion before they start invasive medial care.

[bmbmd]

23. Were they wrong?

No indication in the article what happened. Either they were wrong in the diagnosis(hard to believe that anyone would diagnose sarcoma without a tissue specimen) or they were right. If they were right, he has either received treatment or been miraculously healed.

[Debi]

24. Google Parker Jensen

and read the other articles - he received a second opinion, no cancer and no treatment. Two years after the ordeal began he is alive and healthy.

http://www.patriotsaints.com/MyChildMyChoice/cases/ParkerJensen/Joel_Skousen.htm

[bmbmd]

29. I just wonder what hapened to the

original tissue sample. Gotta be somewhere.

[truth2power]

28. I heard about this on NPR yesterday.

They said the child was still alive and healthy. Not sure about the time frame, though.

I'm on the side of the parents here. Chemo isn't a cure-all. Lots of people take chemo and die anyway. Not like it's the magic answer.

Sounds like the kid's doing ok anyway.

[progressivebydesign]

40. Perhaps he's simply in remission. n/t

[anotherdrew]

32. what if the parents had not been able to AFFORD treatment?

Would the state have taken the child then? All this medical neglect stuff is gonna get interesting when many families can't afford to care for their children un the manner the state considers minimal.

[NNguyenMD]

34. States like California help pay for chemotherapy for chilren from

families who can't afford it, medicaid in some states like California or New York have very generous medicaid policies that cover these sorts of things.

[anotherdrew]

36. thank goodness for that at least.

thanks for the info

[alarimer]

39. in Texas, there is a similar case going on now.

In this case, CPS has custody of the child (who is about 13 I think) because several doctors (at least 3) agree on radiation and chemo to treat here Hodgkins, which is very treatable. I agree with the state in this case. When you have so many doctors who agree on the course of treatment and the parents refuse for erroneous reasons (they thought she was in remission but tests showed she was not), the state has an obligation to do waht is in the best interest of the child. I think that denying their child needed medical care is neglect at best and chold abuse at worst.