Wednesday, May 20, 2009

Medical Ethics

The case of Colleen Hauser and her son Daniel has sparked debate over the question as to whether parents, who through religious beliefs, can deny medical care to their children.

Of course, adults do this all the time. Not always due to religion, but their quality of life has become such that intervention wouldn't improve their condition enough to warrant going through it. Dying with dignity. Given how precious life is, one can't help but respect the wishes of those who simply want to end their suffering.

In some cases, though, religion does enter in to decisions made. Scientology, and professional lunatic Tom Cruise and his melonhead pal John Travolta, have all spoken out against using medications on children. They're not the only ones. Here in Wisconsin, Leilani Neumann let her daughter die of untreated diabetes. A condition that, in many cases, is easily treated with medications, and in the case of Madeline, could have saved her . . . even minutes before she died. Obviously, prayers didn't help.

There are the "miracle" stories, however. Those unexplained cases where a person goes in to remission or becomes cured of their condition. But, when one compares the miracles to the cases where medications and treatments have provided improvement, the miracle cures are pretty rare.

So, what about it? What about parents who, because of their faith, prefer not to have medical treatments available for their children? Even when treatments or medication could help? After all, many of us prefer not to have government intrude into our lives making decisions for us. Isn't this a case of government intrusion?

To me, this is a no brainer. Colleen is now on the lam with her son. Once found, she should be arrested for child neglect and the son should be given treatment. We're talking children here. Dependents. Young people who look to adults to make responsible decisions for them. Danielle is 13 years old. Far too young to understand or make life and death decisions on his own. What's more, the Hausers are catholic. I assume they believe in the right to life for babies. What about the right to life as a 13 year old? Again, this might be different if Danielle's condition were such that treatment would only provide a small level of quality of life improvement and death would be ultimately unavoidable But, it's not. How it is, why it is, that a parent would stand by and let their children die when they can be helped is beyond me. It's not only insane, it's criminal.

The fact that Danny said he would kick and punch anyone who tried to help him does make for a dicey situation. Problem is, once he's dead, we can't ask him if he'd like to do that over again. I wonder what Danny would think about all of this when he turns 30 and has kids of his own?


Anonymous said...

Part of the problem here is that we only know what the news tells us. It appears he has had some chemo - he has no hair. What was his initial prognosis and what were the options offered him? How does/did this course of chemo affect him? What chances does this chemo give him?

I know people who were killed by the chemotherapy, not the cancer. I know people who sailed through chemotherapy with barely a problem. I know one person who decided after three bouts of chemotherapy he would rather just die, and one who has been told he cannot have any more chemotherapy because his circulatory system has burned out. A good friend of mine had every complication he could possible have with his stint in chemotherapy and lost his job, his wife, and his will to live despite the fact that he is now cancer free. I know parents whose children became brain damaged after chemotherapy and one couple with a child on a kidney transplant list.

Where do we draw the line when it comes to how much say parents have over their children's treatment? I refused to give my kids cold medicines and had to take some ugly accusations from our pediatrician about my negligence. (Now they don't recommend you give kids cold medicine!) I have refused other medical advice on my children's behalf, and if I believed the recommended cancer treatment would do more harm than good, I would run too. If my thirteen year old (or fifteen year old or eight year old) objected strenuously to the recommended treatment, I would seriously be inclined to support him, if I felt he understood the entire picture.

And one last question, although I would also like to say finances should NOT play a part in such a decision, but if the medical industry forces a course of action on someone who absolutely doesn't want it, who gets to pay for it? Should a family such as Daniel's be forced to have to pay thousands of dollars for a treatment they absolutely don't want?

It's a tough issue. I'm siding with the mother on this one, but I wouldn't say I'd feel the same in another instance.

Jimi5150 said...

It's true, we know only what the news tells us. From accounts, however, Daniel's prognosis is, or would be, good if he were to receive treatment. He's sure to die, otherwise. At least in this case, the risks, outweigh the benefits . . . which is life. We simply don't know how much burden Daniel can carry for the sake of life. He's too young to be able to answer that question. To me, that's the point.

It would be different if all options had been tried and either failed, or were only some what successful. Certainly, putting a child through weeks or months of suffering with no quality of life in return is inhumane.

That's the other problem. Daniel, by accounts, had only started treatment. The decision by the mother came as a result of an American Indian religion called Nemenhah, which is led by Philip "Cloudpiler" Landis. A guy who, apparently, has a questionable background. Again, if conventional methods fail, I could see a mother pursuing unconventional methods. But, to run to "this" guy and cut off treatments most feel would be beneficial . . . I have to question what's in the head of the mother. I'm not saying she wants her son to die. But, that's as questionable a decision as any.

As far as the finances go . . . tough to put value on human life. Especially that of a 13 year old kid with his whole life in front of him. No doubt the family would be burdened with the bill. Society often reacts kindly to such situations. My workplace just held a fundraiser to help an employee purchase a wheelchair capable van for their handicapped daughter. Big difference between a van and these treatment. Point is, options exists.

It is tough. But, I side with life.

Anonymous said...

And my point is still that we don't know how Daniel was responding to the treatment prescribed. We don't know for sure they would cure the cancer, and we don't know for sure he'll die without it. We don't know what the ramifications of chemotherapy are - calcium deposits in the brain? Liver damage? Kidney damage? Heart damage? It's easy to say so what, all those things are fixable - but what if it means Daniel gets to live in a hospital bed while waiting for a transplant that may or may not extend his life? People with Hodgkins usually have surgery to remove their spleen and lymph nodes, and sometimes other body parts as well, and have a much lower resistance to infections making their chemotherapy sessions even more difficult to bear.

My sister-in-law had breast cancer last summer. She discovered the lump herself, about two weeks after she'd had a mammogram, which was read as negative. She was told by one doctor she needed an immediate radical mastectomy, chemotherapy, and radiation, and the second opinion told her a lumpectomy with tamoxifen was all she needed. She Neither told her that the type of cancer she had was known to twin itself in the other breast - she learned that from a lay person. She went to a third guy who biopsied the other side and then laid out options. A small course of chemo, a mastectomy that wasn't radical (she decided to wait and see for the other one, which had "questionable" tissue in the biopsy) and no radiation. She was lucky. She would still be going through chemo and awaiting radiation had she stayed with the first doctor.

I've seen people get a second cancer from the radiation.

Life is a gift, not a guarantee. Our medical system is not set up for quality of life, only for prolonging it, no matter the cost or the complications or the ultimate toll on one's life.

Jimi5150 said...

Funny how speculation only applies in one direction with you. There's as much speculation that Danny could be cured if he receives treatment. And, there's every chance he will die if he does not. We do KNOW, that mommy took Danny after just ONE treatment.

All the information we do know favors a positive outcome for Danny.

There is speculation that Danny wasn't handling the side effects very well. Is that enough for a parent to discontinue the treatment? Sentence Danny to death? If it were me, I would be doing everything in my power to help my daughter get through the treatments knowing ultimately that they would allow her to live. Sure. In SOME cases, cancer treatment proves deadly. But, given that it's a death sentence anyway one would think it'd be tried. No, it's not easy as a parent to watch your child suffer. But, for me, it would be worse to watch them die knowing I might have been able to do something about it.

And how many people are in remission as a result of cancer treatment?

Anonymous said...

And how many are in remission with other treatment? Think the AMA has statistics on that?

Anyway, Danny's back being evaluated and the mother will abide with whatever goes on, so discussion on this particular course is over. They have made their decision, and everyone should leave them alone.

You say speculation lies only in one direction with me - not so. Your speculation is based solely on the one oncologist involved in Danny's treatment. As I already mentioned, different doctors can give different opinions, but still are solidly within the viewpoints of modern medicine, which is geared to treat body parts based on the narrow research often (but not always) driven by pharmaceutical companies.

Mind you, I'm not against modern traditional medicine - I am alive today because of them. I do believe, however, that modern medicine tends to ignore one's lifestyle, diet, mental stability, and a holistic approach to prevention and treatment in favor of pharmaceuticals and surgery. The whole point of today's medical field is to prevent death, no matter what it takes. This is not necessarily the best course to take, even for children.

What would you tell the little girl lying in a hospital bed on dialysis? She may be in remission from her cancer, but she has no friends, hasn't been outside to play for almost six years, has never known the joy of playing with small animals or on a swingset or in a sandbox, has never ridden a bike and probably never will. She has two parents who are divorced and who work two jobs each just to pay her medical bills. They had two mortgages on their house and are now facing foreclosure. (And yes, there have been many fundraisers - thousands of dollars have been raised and/or donated, but it's nothing compared to the staggering debt this family has.) She takes eighteen different medications every day, some of which make her sick. Her teeth are ruined from the antibiotics, and she has moderate liver damage from the medication that treated her systemic yeast infection, another side effect from the antibiotics. Her hair will never grow in normal because her follicles were damaged by extensive chemotherapy. A new kidney may give her a shot at a new life, but her parents have been told that she may never live a normal life, that she will need constant monitoring, and if she makes it to adulthood, should never experience the stresses of pregnancy. They have been told that kidney transplant patients generally have a five to ten year life span in this scenario. She has a 30% chance of rejecting the kidney within the first forty-eight hours.

All this little girl wants to do is go to a "real beach with seashells on it" and play in the ocean. She is almost nine now. She came down with cancer when she was three and a half. They gave her an 80% chance to be cancer free when treatment began, and they remind the parents every day how lucky they are that their little girl is alive.

There are many days when all of them - this little girl included - regret the treatments.

Jimi5150 said...

Well, I was trying to stay on topic. Silly me! I didn't know I could introduce limitless hypotheticals!

(I thought I was qualifying my statements . . . oh well)

In THIS particular case, that is, Danny Hauser . . . no other cases or medical conditions . . . the decision by the mother seemed very premature, medically speaking. And if was made due to religious beliefs, wrong.

Talk to the faith healers about keeping records. How in the world would that be AMA responsibility?

Anonymous said...

Faith healers? Now who's off topic?

That little girl is no hypothetical - she's as real as Danny.

Danny, who by the way, has been vomiting his way through his forced chemo treatments and is depressed and angry for having to endure them. His doctors admit he "did not respond well" the first time around and "is not responding well" this time either and are rethinking their chemical cocktails. Nice to be experimented on.

Jimi5150 said...

You're the one who brought up "other" treatments.

Almost all of medicine and the medical field is experimental to some degree. That's a silly argument. Many people don't "respond well" to cancer treatment. But the alternative is worse.

Anonymous said...

Is it? That's the real question. No parent wants to see their child suffer, but what if the parent truly believes all that suffering isn't worth it?

Look, I know where you're coming from. Been there. But try spending time on a cancer ward. Go volunteer at your local Ronald McDonald house. Yes, you'll see the ones getting better, and the ones in remission, but you'll also see the ones who don't get better, the ones who are told, after all that vomiting and hair loss and everything else, that they can extend their life by a few more months if they keep up the treatments. Parents cling to that hope... maybe this time the tumor will shrink, maybe this chemical cocktail will be the last one... and in the end, the child dies in the hospital, surrounded by tubes and noise, and never did get to do all the things they wanted to do...

When parents choose otherwise for their children, who can say they're wrong? Why not live happy? You really should get to know some of those cancer kids - they are not the ones afraid of death.

You've obviously made your mind up for your own child. Just stop judging other parents who reach a different conclusion.

Jimi5150 said...

I have been there. You don't know anything about me and what I've done or been through. Nor I, you. Stop making assumptions about me.

Neither one of us knows this kid or the mom . . . I'm assuming, admittedly. Which has been part of my point . . . we don't know, therefore cannot simply assume he wouldn't fight, and take on the side effects, to live.

20 years from now he may be very grateful he did.

As for judging, that's what we do when given certain information. Sure, this kid might be better off dead. But, one, he hasn't been given much of a chance to make that decision, and two, given who the mom wanted to align herself with I question her competence.