|
|
Post by Jane on May 20, 2009 20:39:44 GMT -5
Have you been reading about the mother who has gone into hiding with her eleven-year-old? He has lymphoma and has had one treatment (don't know if it was chemo or radiation). Now she is refusing further, for "religious reasons". Recent x-rays show that his condition is deteriorating; doctors say he could be helped with treatment.
Does his family have the right to refuse treatment on his behalf?
|
|
|
|
Post by gailkate on May 21, 2009 9:33:55 GMT -5
It's a heartbreaker, isn't it? We've seen a lot of this story because the family lives here.
Clearly the boy should be treated, but his parents aren't monsters. They love him dearly. They are Catholic but have also been drawn in by the promises of some American Indian group that insists herbal treatment will work.
Chemo is awful for many patients, and I'm guessing the boy was so sick his parents decided the cure would kill him. Then he seemed to go into remission, though x-rays this week show the tumor has grown again. That's when she took off. The father is now amenable to using chemo as well as the herbs, but she deliberately didn't tell him where she was taking their son.
I honestly don't know in this case. All the experts say this is a treatable cancer, with something like 95% success. Still, the family has been terrified by a vision of doctors manhandling their boy and forcing needles into him. The judge also ordered that when the boy is found he should be put in foster care while undergoing treatment. My God! Force treatment on him and make him undergo the misery away from his family?
And yet, the mother is obviously unstable at this point. Scared, wildly hopeful, sure that god has shown her how to save her son. Legally, all this has been worked through with unarguable precedent. He is a minor and the court has the right to enforce treatment. CNN's legal consultant and a well-known medical ethicist talked about this Tuesday night and said there are psychologists and family therapists experienced with helping families through all the fear and doubt. We don't know what kind of help and advice they got before everything escalated into this fiasco.
|
|
|
|
Post by doctork on May 21, 2009 11:12:18 GMT -5
The boy is reported as being 13 years old, and it is with teens that these matters become tricky. Although they are not yet of legal age, they often have strong opinions that judges will consider in rendering a decision. Most of the time, such young teens (13 and with reported learning disability that makes him unable to read and understand) will be ordered to get the recommended treatment. A 17 year old who has a bad disease with low likelihood of cure and doesn't want to spend his/her last days sick in the hospital will probably be allowed to decline treatment.
To me, it's not even a question - Hodgkins lymphoma has a very high cure rate (and survivors live normal lives), but it is almost always fatal without treatment, and he and his parents were irrational in refusing treatment. His first round of treatment was very successful in reducing the size of his tumor, but now it's growing back without therapy, per his X-ray on Monday. I think he still has a good prognosis at this point but there is not a lot of time to waste (I'd defer to the oncologists on that point).
The child probably needs to be in the hospital, but even on an out-patient basis, the staff are very skilled and experienced in treating reluctant patients and their parents. After all, no one of any age wants to have chemo or radiation. The foster home was probably proposed as a means of ensuring the child get the recommended treatment - for the very reason that has occurred, mother and boy have vanished.
The treatment for Hodgkins lymphoma are regarded as "not that bad" as such regimens go, but that is easier for others to say when they haven't actually done it. The cure rate is so high for Hodgkins that I'd think everyone would opt for it. The child looks and feels fine now, but a few weeks or months down the line, death from untreated cancer will be ugly. Obviously he and his mother can't see that.
|
|
|
|
Post by Jane on May 21, 2009 19:17:42 GMT -5
Some religions seem to make people stupid. Or maybe they choose those religions because they are already stupid. Did someone say the mother is a Catholic? I'm sure her priest would advise her to take her son for medical treatment.
|
|
|
|
Post by doctork on May 21, 2009 21:06:30 GMT -5
The reports have said the mother and family are Catholic, so I'm sure you are right. I've taken care of many Catholics, and AFAIK, there is nothing in their religion that would advise against medically indicated cancer treatment.
In fact, I think the intent is always to err on the side of life. If the treatment might cure him and allow him to live, then of course he should have treatment. And frankly, there's probably no reason he can't have herbal remedies along with chemotherapy, if he and his mother would want him to have that.
|
|
|
|
Post by Jane on May 22, 2009 8:06:12 GMT -5
As I reread my post, it sounds like I say Catholics are stupid, which is not what I meant. But this mom's particular interpretation of religion is certainly awry.
When I lived in Muskegon, a man there who was seriously mentally disturbed was told by his "pastor" that he didn't need to take medication and that god would cure him of his demons.
He stopped taking medication and burned up his two young sons in a foundry furnace where he worked.
I think the pastor should have been charged with murder.
|
|
|
|
Post by doctork on May 22, 2009 9:43:06 GMT -5
I think I got what you meant, no misinterpretation. This woman's interpretation of the Catholic faith seems to be awry.
I have no objection to patients who wish to use alternative treatments (some of them might help), except when they use them instead of proven medical therapies. And when it's a child who is denied effective therapy, the court is going to intervene.
After all, cyanide is "natural" too - as are about one-fourth of the medications that physicians use.
|
|
|
|
Post by brutus on May 22, 2009 22:36:44 GMT -5
He is 13 yrs old, but his mental capacities are less than his age. I've heard, via radio reports, that his IQ is lower than that of a 9 yr old and that he does not read. So, would you let someone, say an 8 yr old decide for himself if he wants to take treatments?
~B~
|
|
|
|
Post by doctork on May 23, 2009 13:10:51 GMT -5
He is 13 yrs old, but his mental capacities are less than his age. I've heard, via radio reports, that his IQ is lower than that of a 9 yr old and that he does not read. So, would you let someone, say an 8 yr old decide for himself if he wants to take treatments? ~B~ No way! I'm sure that's why the judge took the extreme step of considering foster home placement. Usually, the judge just orders the treatment, and the parents go along with the court order. Sometimes the parents are grateful for the court order, because they want the child treated, but have conflicts about rejecting their clergy person's recommendation. However they get there (court order, or voluntary), most kids and their families accept and are eventually grateful for the treatment. Skilled oncology staff deal with this regularly. That this has been so atypical is the reason it is national news. A few years ago there was a similar case in Virginia - a 16 or 17 year old boy who did not want therapy for his Hodgkin's. However, he was on his second or third relapse, with a grim prognosis (no chance of cure), and he was also a mature 17 year old who accepted that his disease was terminal, and just wanted to be comfortable at home for his last days or weeks. The judge in that case sided with the boy and his parents and did not require treatment. There is a morbid medical joke about this, so don't read further if that offends you. Q: Why do they nail coffins shut for cancer patients? A: To keep the oncologists out. The truth is, sometimes doctors go overboard in treating patients who are terminally ill, subjecting them to painful treatments when there s no hope of a cure, or even a significant remission. That is not the case with the Minnesota boy - he has a brand new case of Hodgkin's with a very favorable prognosis - 90 - 95% chance of complete cure. He obviously lacks understanding to make a decision himself (he's only 13, at best, never mind the other IQ and disability factors), and his mother is deluded by her "pastor." |
|
|
|
Post by gailkate on May 24, 2009 10:14:08 GMT -5
|
|
|
|
Post by doctork on May 24, 2009 15:44:19 GMT -5
If he was last treated in February with only one course of chemo, he's now been 3 months without any treatment. No wonder his tumor has grown. His doctor says the tumor growth threatens his airway, so it must be in the chest around the windpipe (fairly typical for Hodgkins). If his airway is blocked, he will essentially smother to death from tumor bulk, not from the lethality of the underlying disease. That is a really awful way to die.
Note that the pediatric oncologist says this is the first time he has had such resistant parents in all of his 25 years of practice. A very telling statement, and no doubt this is why it is newsworthy. It is almost always possible to find a way to work with the family, modify the treatments, create a solution. The mother must be a total nut case.
|
|
|
|
Post by doctork on May 27, 2009 18:50:04 GMT -5
Did everyone see the news story? The young man is now back at home in Minnesota and scheduled to begin another round of treatment tomorrow. All charges have been dropped against the mother, which I imagine was necessary to get them to return, seeing as how her lawyer negotiated their return on a private jet belonging to a film company. I'm just glad he will get treatment, as even now he has a high likelihood of cure.
|
|
|
|
Post by joew on May 29, 2009 23:04:49 GMT -5
I saw the headline. Good news.
|
|
|
|
Post by hartlikeawheel on May 31, 2009 10:55:24 GMT -5
I've been watching this case closely also. Not only because it is close in proximity but also close in heart and mind. A couple of months ago a large tumor, probably cancerous, was found in my mother's bladder. She is nearly eighty-six, about seventy-five pounds and very frail. Without walking several times a day she would soon loose her mobility. The young urologist and several other doctors we met along the way all urged surgery with subsequent bed rest, intubation, followed possibly with chemo and radiation. Chances are this would commit her to being bedridden for the remainder of her years. Not only bedridden, put probably also miserable. My cousin's wife terminated chemo only this last fall and made the decision to accept her long-progressed illness because she wanted to be able to have some enjoyment in her final months. The family supported that. Mom is in the middle stages of Alzheimer's but definitely was not interested in surgery in spite of the fact that at times it is unclear of how aware she is of the implications of her choice. I was shocked by the shaming statements made to her and to me by the medical staff in an effort to change our minds. It took many meetings with care staff to establish firmly that we were on the same page. The Urologist not only followed up with a phone call to me and to the care center urging treatment, but later sent me a forceful letter. I do understand his (legal) reasons for wanting to establish that he recommended the "proper" method for healing. Their insistance creeped close to harrassment. The pressure that I felt from the medical system was especially difficult considering that I was so instrumental in being the one who had to hold firm on what Mom wanted and what I felt was the best choice for her. It wasn't a far stretch from there to put myself in that mom's place and imagine the terror she must have been experiencing. But I have a larger concern of the implication this militancy toward illness may portend. This concern may seem fanciful to some. I have my ear to the ground as our country goes through this shift in values. With the waning of economical security I've read many statements from the young about the uselessness of the aged and how they are using the resources of the young. We all know that modern medicine is extending the length of life, sometimes to the expense of the quality of life. It doesn't seem impossible that we will see increasing urges for legalization of euthanization. A whole 'nother discussion and one with many considerations. Legal precedent is being set by allowing a medical entity to force treatment upon a family. That is a red flag for me. Please recognize that this concern is different from the ethical concern of what the mother should/should not be choosing. The child, it is said, has had his latest chemo treatment and is reported as feeling angry and ill. What thirteen-year-old wouldn't be angry, I'm thinkin'.  |
|
|
|
Post by doctork on May 31, 2009 12:36:38 GMT -5
I think what you have described happening to your mother is appalling, hart. An adult has the right to choose to have, or not have, a therapy, and in my practice I've never seen adults forced to partake of therapy they decline. But then as a family doctor, I usually have a longitudinal relationship with the patient and family. Were I your mom's physician, knowing her and you, I'd have let the urologist explain the options, and then told him to back off if the decision were "no surgery." Sometimes it is the responsibility of the family doc to help you stand your ground, because the medical establishment can be very intimidating.
I've mainly faced this issue in my practice with Jehovah's Witnesses who decline blood transfusions. If a Witness is pregnant, I'd tell her I will not order a blood transfusion for her, even if her life is at stake, if that is the choice she makes. However, should her baby need a life-saving transfusion, I will not have any latitude - the head of the Department of Pediatrics will get a court order, and the baby will be transfused. I've never had to do that. One of my colleagues was both a Witness himself and a board certified pediatrician, so I would ask him to consult on those Witness babies who looked like they might need a transfusion. Problem solved - babies did fine with lots of iron replacement and I was legally protected because an appropriate specialist concurred with that plan.
I have read of a rare court decision where a judge ordered a Witness mother to have a transfusion on the grounds that her children needed their mother. That was regarded as an outlier decision, as most venues recognize adult autonomy and usually suitable relatives are there asserting they will care for the children if necessary. I also recall a case of a court-ordered C-section because the attending obstetrician felt the fetal distress mandated surgery but the mother refused. By the time the court order was obtained, the mother had delivered a healthy baby vaginally.
In a litigious society, doctors do have to "prove" they ordered the "proper treatment" lest the patient or the estate decide to sue later on. All of a sudden, the patient was a much-loved family member who was not allowed a little more time because additional treatment was denied. It shouldn't feel like harrassment, though I suppose it might. I've also seen the opposite - appropriate therapy withheld because the patient was "too old," even if they were a vigorous 70 year old still working full-time and playing tennis on weekends.
In the case of a 13 year old boy who is demonstrably (as reported, I don't know personally) immature with a high likelihood of cure with treatment, I side with the court here. The state has an interest in preserving life for a minor child. The state should butt out with adults. Nobody likes chemotherapy, but in a child who can be cured, he should have that first course and see how it works out. I've seen a lot of young adult patients who relate to me how difficult it was, but how grateful they are for their good fortune to have been cured. And that is the key with Hodgkins in particular - most are cured, and most live a normal life afterward - they don't have amputations or other disfiguring surgery, they don't have debilitating permanent organ damage. They live a normal life - quite a few survivors go into medicine or nursing because of their experience.
|
|
|
|
Post by joew on May 31, 2009 20:17:58 GMT -5
Hart, I don't think this case is precedent-setting. I think it is following a long line of precedents that hold that parents have no right to withhold life-saving treatment from minor children who are likely to die without it. By definition, a minor is incompetent to make the decision for him/herself. And when parents are endangering a child in any number of ways, the state steps in to protect the child. Usually it is by placing the child in foster care, although in medical/religious cases foster care is not necessary because the parents obey the court order. Not only have there been cases involving Jehovah's Witnesses, there have also been some involving Christian Scientists. Usually the parents feel that as long as the court requires the treatment, they and their children are not morally responsible for the treatment happening. This case was slightly different, but it is well established that the court can order treatment for a sick child whose parents fail/refuse to provide it.
It seems to me on the more general issue of trying to force treatment on adults, we have two contrary movements in society. One side is represented by your mother's urologist: treat everything as aggressively as possible. The other is the "quality of life" movement which is ready to withhold even nutrition and hydration from patients who are classified as in "permanent vegetative state."
|
|
|
|
Post by doctork on May 31, 2009 21:18:35 GMT -5
We're not quite at legal euthanization, but close. Here in Washington, "Death With Dignity" was passed recently so that terminally ill patients can request lethal dosages of medication to end their lives.
The WA law was modeled after a similar law which has been operative in Oregon for over 10 years. There are a lot of requirements to be met before the prescription can be issued, to ensure that there is no euthanization, and it is only by patient choice and only in the terminally ill.
There have already been newspaper stories complaining that Washington doctors are not willing to cooperate with this new law (although the first WA "assisted suicide" happened last week). I think another angle of the "voluntary vs compelled" issue is that doctors should not be pressured to kill their patients. I do not regard it as a "problem" that I would refuse to issue a lethal prescription to my patient.
I believe that hart's mother has a right to refuse invasive, painful, and risky procedures. Adults should have the autonomy to decline treatments offered by their physicians. It can get sticky when an adult is not competent and his/her wishes are unknown.
|
|
Dopey Member
