Wednesday, July 26, 2006

Right to choose

Can the court force you to take medical treatments? This is the debate in Virginia right now. Starchild Abraham Cherrix is a 16 year old diagnosed with Hodgkin's disease. He has already went through one round of chemotherapy. He told his parents that he did not want to go through chemo again because of all the side effects. The family decided to pursue alternative therapy instead of another round of chemo.

In a shocking decision last week, the court ordered the teen to report to children's hospital to start chemo for his Hodgkin's disease. In addition, the court ruled the parents neglectful in allowing their son to make his own health decision -- Thereby, forcing the parents to share custody of their son with social services. I already have a problem with the legal system. But this story goes much deeper....

Government Intrusion: The government, through the court system, is going to tell patients what treatments to receive? It shouldn't matter what your political views are. This has got to bother you.

Alternative Therapy: The natural health bloggers are absolutely upset with this ruling and the possibility that seeking alternative therapy was a factor in the ruling. What if this family refused chemo in order to pursue a faith healer?

Parental Rights: How can parents be labelled neglectful after considering all treatment options and deciding to support their son? Some parents do not agree that immunizations are beneficial. If parents refuse their child to receive immunizations, are they neglectful? Can the court force immunizations on children? If a Jehovah's Witness refuses blood products for their child, are they neglectful? Can the court force blood transfusions? Who has final say in the care of children? The parent or the court?

Patient Rights: What's fascinating and troublesome at the same time is that if this patient were 18 years old, an adult, this would not be a news story at all. Adults have the right to refuse any and all treatment, even potentially life saving treatment. This is personified in the phrase Do Not Resuscitate. Hollywood glamorizes this decision making process in TV and movies. What's different about a 16 year old that the court has to step in? No matter what your political view, it is true that in some states 16 year old girls can consent to an abortion. Why can't a 16 year old guy refuse treatment?

Late Tuesday afternoon, the ruling was lifted and a trial date set for August 16th. The joint custody order was also lifted. What will happen next? I don't know, but this story may have huge medical and legal ramifications depending on how it plays out. Definitely a story to keep close watch on. What are your thoughts on this case?

26 comments:

kt said...

Oh my Dr. A, that story realy gets me. I have hung the chemo that gives the most horrible side effects that human beings should never experience. But that is up to them. It is there choice. 16 or not. The 16 year old has a memory and it is probably stinging with the long recovery process after chemo. It is not a day, it can be up to 3 weeks of recovering from side effects. Thank you for this post, definately will keep an eye on this.

Pattie said...

I believe that a boy of 16 years old should be able to make his own health care decsions if his parents support it and he truly realizes the consequences of his choice. The government should butt out.

Lea said...

I saw Abraham and his father interviewed on the "Today Show" a few weeks ago. Abraham was a very mature 16-yer-old and I feel he should be able to make his own decision regarding treatment. Our bodies are OURS, not the courts' or governments'!!

Cathy said...

This is a topic that is sure to get some people fired up. Noone has the right to insist that someone indure the side effects of chemotherapy. When I was starting chemo, my onc said to me "If this ever gets to the point where you don't want to do this anymore, you just tell me, "Stop this roller coaster and let me off." Which meant I had a choice to proceed or not proceed.

The govt. needs to stay the heck out of this boy and his parents life. How sad to force chemo on someone.

Mother Jones RN said...

Big Brother is getting too intrusive, and needs to stay away from the patient's bedside. If a family member starts interfering with patient care by telling staff “how it’s going to be,” we can have security throw them out of the hospital. Now the government is trying to intrude in the health care decisions made by patients and their family members. This is crazy—and dangerous. I’ll be watching this case very carefully.

Moof said...

Dr. Anon, the government really needs to go on a diet. It's becoming far too large - far too intrusive.

That said ... we need to remember that we get the government which we ask for ... people actually vote this sort of thing in ... they usher in the larger, more intrusive laws by voting for the lawmakers behind them, and in some instances, voting for the laws themselves.

Voter education maybe?

Perhaps a course in cause and effect ... and if you pass, you're allowed to vote? *sigh*

Take a look at one of the reasons that I think people shouldn't be allowed to vote without understanding the consequences of their actions:

Ending Women's Suffrage *cringe!*

I have a similar doc someplace on my computer ... a fellow set up an "End Women's Suffrage" table in a mall ... he got lots of signatures.

Personally, I think that as long as the boy in question understands the consequences of his actions, that he should be allowed to make a choice of whether he's going to continue with chemo or not.

Same goes with refusing certain treatments for medical reasons ... within limits. A example of a need for intervention would include the situation of a parent who decides to forgo a "last resort" blood transfusion for a child too young to decide for himself.

I'm of the opinion that the government should only intrude when a person is making a decision which will prove deadly for another person who is unable to make a decision for himself, whose life could be saved, and who has no clear written mandates of his own. In this sort of case, it's no different than preventing someone from taking another person's life.

.

Dr. A said...

Great comments already! I really did not want to go on a political rant, but here we go! I thought that we were the government (you know of the people, by the people, for the people). We elect some of these losers (those of us that actually vote). Factor the entire illegal/undocumented immigrants issue, and that really changes the political landscape years down the road. Most of the people I talk to don't even know that this year's national elections could have huge implications.

Voter education? Absolutely! That "End Women's Sufferage" thing really scares me. What else are people doing out there?

How much control should have the government have? That's the crux of the political argument in this country right now. No matter which side of the issue you fall on Iraq, or abortion, or immigration, or whatever, at least get involved in the political process - Let your voice be heard!

I'm Dr. A, and I approved this message....

thethinker said...

My attention was first drawn to that news story on another blog and I was shocked that the state would try to make that decision for someone. 16 year olds are perfectly capable of making their own decisions in regards to their own medical treatments.

BarnGoddess said...

This is unfair. Our govt' needs to worry about getting child predators and the REAL criminals off the streets instead of overstepping thier boundaries like this case. I am a firm believer in its MY body, MY decision.

As far as negligent parenting, I see nothing of the sort. Our govt' is so screwed up!

ladybug said...

this story absolutely broke my heart. for the simplest of reasons... unless you have been on the receiving end of "medication" that is meant to poison you and save you, and battled the side effects of it, you have no right to tell anyone who HAS dont cancer treatment what they can and cannot choose to start or stop.

it makes me so sad, as his parents are sooo supportive and realizing the alternative stuff may not work, and the risks, but they love their son enough and know they dont want him suffering thru chemo if he doesnt want it - even tho i am sure part of them selfishly wants his cured.

i got the impression that this is also about the survival rate of his disease. for example, if he had an aggressive cancer and the 5yr or even 1yr survival rate was in the crapper, they wouldnt feel the need to step in. but since the 5yr survival rate is 85%, then he must go thru the suggested protocol. sadly, there is still a 15% that dont make it 5yrs out, and i dont wish anyone that fate, the numbers are as they are for a reason. sometimes treatment doesnt save you. :(

but mostly i am outraged this patient has no patient's rights - and that parents no longer have the right to make decisions/support decisions of their child.

wolfbaby said...

As others have said big brother really needs to mind it's own business...

There are a very few instances where big brother should step in and obviously this is not one of them...

Social Services is screwing up, yet again....

Let the young man face his illness and his battle his way.. the family is dealing with enough without the goverment sticking it's big nose in..

Dreaming again said...

if ya hadn't put in the immunization part ... I'd be with you 100% ;)

I have issues with the immunization issue. But then, I have a husband who's been severly disabled by polio, and I don't think a lot of the parents refusing the vaccinations understand the diseases they are for. They think they are chicken pox like diseases not the devestating diseases that they were.
Our generation just didn't get the full understanding of those diseases therefore doesn't understand the real need for these vaccinations.

Other than that ... I agree with everything said.

healthpsych said...

In my opinion, the parents are anything but neglectful. They're considerate and caring, choosing to listen to and support their son in his decision (and I'm assuming here that they probably ensured it was a fully informed one).

It's atrocious that the joint custody issue has been raised at all. It's scary that the government can intervene in this at all.

The vaccination thing is a different issue for me. It's about more than the individual. While I definitely don't believe in forced vaccination, I think many people have forgotten the severity of some of the illnesses we get vaccinated for, having been protected by the vaccination programs over the years. As more people opt out, I expect these illnesses will increase again.

NeoNurseChic said...

But does anyone else feel that it's sad that this kid could truly be helped by the chemo and have long term survival...but doesn't want to go through it because of side effects? I know that he had it before and it failed, so of course that does change things... But if it were my own child, I would lose my mind if they chose not to endure short-term side effects for possibly saving their life.

I also lost a 9 year old close buddy of mine to cancer in 2004 as well as another buddy...16 years old who chose to end pursuit of treatment and go on hospice for metastatic brain cancer. Both losses were hard, and I wouldn't wish anyone to have to go through childhood cancer.

I don't think the government should have the final say at all... But I still feel sad that there is treatment out there that could save his life and I'm not sure that short term side effects warrant throwing your life away... But maybe I haven't read enough about this story and am coming at it from the wrong angle!

Dinah said...

Not much for government intrusion on medical decisions. Still, this is not a simple issue. If the boy gets treatment (which includes awful but time-limited side effects some of which might be alleviated with medications, some of which might cause him more permanent difficulties), he stands a better than even chance of living for more than 5 years (85% did someone say... I read that as he'd probably survive). He may even go on to live a happy productive life for many many years. With alternative therapies, the very high probability is that he dies within a couple of years. This doesn't bother anyone?...his parents are simply seen as supportive and caring. I'm not questioning their love, I just don't get what amounts to permitting suicide-- and we don't allow 16 year olds to hang themselves under the guise of supporting their decision. Maybe it wouldn't be a news story if he were 18, though honestly, I've never heard of a young adult refusing treatment for a highly treatable type of cancer. Psychiatric consultations would be called, fuss would be made, relatives would be insisting.
This is similar to cases where the courts force Christian Scientists to get treatment for their dying children, or Jehovah's witnesses to allow their children to have life saving transfusions.

If the case were one with a very poor prognosis (someone mentioned metastatic brain cancer...) with a certainty of death and the likelihood that chemotherapy would simply cause suffering without the prospect of return to a good quality of life, the issue of supporting the teen's decision would be clearer (and it wouldn't be a court case/news story).

I wonder what Flea (the pediatrician) thinks.

NeoNurseChic said...

Dinah,

Really I'm with you on this one... It was me who mentioned metastatic brain cancer because my friend's nephew died from it 2 years ago...and he had gone to hospice after going through a lot of surgery, chemo, etc. That was totally different...

Just because 16 year olds are "close enough" to 18 still doesn't fit with me. Doesn't anyone question this from a developmental perspective? Does everyone really believe that 16 year olds see life with the same clarity as adults? What does this say about his inability to see past short-term issues for long term goals? That's my own personal issue with this... They are still growing and developing in both body and mind. And even though in this society we rush growing up like it's a mad race to the finish, we still must remember that a 16 year old is still an adolescent...

I'm still not saying that government should step in and play God. But this whole thing doesn't sit right with me...

Carrie

Dreaming again said...

hmmm the reports I'd seen are that he would not survive 3 years with or without chemo.
(lovely news stories, tend to slant it the way they want it anyway)

I don't think the government has the right to take medical decisions out of the rights of the patients or their families.

I think education has to be paramount.

The founder of the Oklahoma Myasthenia Gravis Chapter died because she chose alternative medicines over traditional ... she went off all the immunosuppression medications, the mestinon etc .. and the disease that was once fatal, and is now treatable, became, once again, fatal under the hands of an alternative medicine practioner. She had the choice. It angers me, but it was her choice.

He might have a life in front of him, and the parents should be making a better decision, maybe the courts should be ordering a second opinion, or further education of both choices ... but for them to order treatment ... I have real trouble with that.

Carrie, my best friend's 18 month old baby has brain cancer ...an ART tumor. We're praying and fighting for her life right now. Chances are 10% but they're fighting with everything they have!

Dr. A said...

This has been an excellent discussion. A real life ethical case. What if this person was 86 and not 16? And, this 86 year old is has healthy as a 66 year old -- and s/he refused treatment? I can bet you some people would say, "Maybe dementia/Alzheimers has started. S/he doesn't know what their talking about, we should treat anyway."

People refuse treatment everyday in my office. Granted, it's not as dramatic as cancer. But, refusing cholesterol meds because of mild muscle aches (not rhabdo) or refusing blood pressure medicine because they refuse to take pills, I believe constitute refusing life saving treatments. What happens, I make sure they understand what their decision means, document it, and move on.

Ethics are never about clear cut cases. There's always a grey area. I agree, it's definitely a complicated issue. Sure, cancer with mets is probably a "slam dunk" case (ethically), but how often does that happen? What does the term "persistent vegetative state" mean? Depends who you ask.

I guess for me, the question I'd like answered is this -- Who has the final decision? The individual or the court/government. And, I know that this will probably be on a case by case basis.

The best thing we can do now, is to have this discussion. I appreciate all the feedback. I'm going to submit this post for Grand Rounds next week. Thanks to all!

NeoNurseChic said...

Well I just scanned the blogosphere for more on this topic and read this post over at Orac's blog, Respectful Insolence. What I'm seeing here is that this kid truly believes the altie treatment will work. Not just refusing chemo for the sake of refusing chemo, but truly believes he will be cured by the altie treatment, despite evidence that his tumors are growing. This says to me that it's a child's mind that hasn't matured enough to truly know what is going on here...

Did I mention that I also had a tumor at 16? Benign, but let me tell you...it really was an experience. And I will also say that I know I do not look at it the same way now as I did 9 years ago. And I was always very mature for my age...but my 16 year old brain could only deal with the issues at hand as far as a 16 year old brain can do this... Had the tumor not been surgically removed, it is likely I would have died. What if I had said no to allowing an ENT to cut into my face, which ended up looking like a MACK truck had smashed right into it? Benign tumor...but they cut into the face of a 16 year old girl. Do you think some 16 year old girls would say no? It would have likely been deadly had I made that choice, however.

Yes he can make his own choices, but I still feel that there are developmental issues at play here.

Dreaming again said...

But Dr. A, it's not an 86 year old, or 66 year old, or 46 year old ...but a 16 year old.

Are THEY making the decision as a family ... and the parents simply SAYING that he's making the decision ...is the decision being made based on the parents beliefs?

or, is this a decision of a teenager.

In NO way would I let my 16 year old make his own medical decisions. AND this is an extremely mature, intelligent 16 year old planning on going to medical school!

PARENTS, not the government are supposed to be making these decisions.

The problem is, the parents seem to be making the decision based more on the right to make a decision more on what is best for their child ...

The hospital may be sensing that. That may be why they stepped in and went to the courts to begin with.

Dinah said...

The government interferes with your life every moment of everyday. They take your money for taxes, tell you to give HIPPA (oops, I may have forgotten the acronym) notices to patients, tell you if you can practice medicine (oops, did you pay that licensing fee). Maybe it's okay if they tell you can't let your kid die (even if you did name him Starchild).

Really, the staging/prognosis on this is important to the case. If the child has a tumor with a poor prognosis, the government doesn't belong in this case. An early stage Hodgkins Disease has an excellent prognosis and treating it with vitamins/diet/herbs because a child doesn't want to tolerate the momentary side effects of vomiting, hairloss, fatigue, and being stuck, is tantamount to allowing the child to die. I took a look at some of the articles on the boy's website, they compare chemo treatments to Torture, say nothing about the fact that they can be livesaving. People recover from chemo, and I've seen two chemo'd/irradiated patients go on to live many years and have families (including a 15 year old girl who'd had Hodgkins, later graduated college and had kids).

The articles emphasize that he's feeling better now...this is all short-sighted.

What would you do if your child refused treatment for a potentially treatable illness and chose instead to take a route that assures his death?

There are many things the government can take your child away for-- not sending them to school, smacking them hard enough to leave a bruise-- this boy remains in the care of the family, the court is sharing custody over medical decisions to keep him alive.

His age is relevant, though I suppose if he were 18, I would want to be sure he wasn't making a suicidal decision based on a psychiatric disorder or limited mental capacity. If not, I'd simply call him stupid. Many people do seek alternative treatments, that's great, but most don't when the evidence is that conventional treatments might save them. Or they do both (fine with me if you give him supplements/vitamins/special diet while he has chemo and RT)

So I suppose a bone marrow/stem cell transplant isn't in the works for this kid.

Where's flea?

communityhealthcare said...

Hands down it is the patient's right to refuse treatment, in my opinion, except for CLEAR cases of a person against the guardian's wishes when medical advice is on the side of the guardian (for younger children and elderly with guardians.)

ClinkShrink said...

I agree with Dinah. It shouldn't be a parent's right to name a poor kid Starchild. (You beat me to it again.)

Anonymous said...

Recurrent Hodgkins has a 10 year survival of nearly 50/50.

"Starchild" is a minor and it is the responsibility of the government to intervene.

The parents belong in prison.

Anonymous said...

"Starchild" is a minor and it is the government's responsibility to intervene.

His parents belong in prison.

Recurrent Hodgkins has a 10 year survival of nearly 50/50.

Why do you guys want to reduce his chances from 50% to 0%?

Do you think that dying from untreated Hodgkins is pleasant?

If you're over 18 and think a sugar free diet or moonspots will cure your cancer - go right ahead.

Anonymous said...

"Starchild" is now 18 and free to make any stupid decision he wants.

His parents belong in prison for attempted murder.

Murder if he dies.

Untreated Hodgkins takes 7 years to kill a person.

He did radiation instead of the recommended chemo/radiation.

Hodgkins is a highly cureable cancer. Recurrent Hodgkins has only 50/50 odds.

Parents have far too many rights - clearly.

Am I charged up about this topic? You bet I am. I was cured of Hodgkins 25 years ago. Plus, I had religious, lunatic parents. My diagnosis came 2 months after my 18th birthday. I'm grateful I didn't have to go to a judge to get treatment.

Yes, chemo is bad.

Is it worse than dying from untreated cancer before you're old enough to rent a car?

No. No, it isn't.