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Old 11-01-2012, 11:24 AM
 
Location: Foot of the Rockies
90,316 posts, read 120,488,465 times
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Quote:
Originally Posted by Howest2008 View Post
I agree to disagree with you the medical community do have " gene therapy for genetic defects " see the link that I have provided below.

Gene Therapy for Diseases | ASGCT - American Society of Gene & Cell Therapy
The kid was born with an incomplete brain. There's no gene therapy that can help her! If there was, they'd do it!
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Old 11-01-2012, 12:19 PM
 
6,993 posts, read 6,326,796 times
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Quote:
Originally Posted by wjtwet View Post
Yes you proposed to leave the child alone and let the child die
No matter what is done for this child, she is going to die before her first birthday. I propose no extraordinary care for her - palliative care only and all the love her family can give her.
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Old 11-01-2012, 12:30 PM
 
Location: Fort Worth Texas
12,481 posts, read 10,206,647 times
Reputation: 2536
Quote:
Originally Posted by ray1945 View Post
No matter what is done for this child, she is going to die before her first birthday. I propose no extraordinary care for her - palliative care only and all the love her family can give her.
No matter what is done for all of us we are going to die so why spend any money on anyone?
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Old 11-01-2012, 12:47 PM
 
Location: Georgia, USA
37,032 posts, read 41,094,361 times
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Quote:
Originally Posted by malamute View Post
Every one of us is going to die.

I didn't see in the article what part of the care she's getting is so extreme, the parents are caring for her at home. Do we remove feeding tubes from everyone using a feeding tube? Do we deny everyone antibiotics? IVs?

Maybe the real problem is the incredible cost of health care where one hip replacement with a 3 day hospital stay ends up costing $100,000. The problem with Obamacare, it doesn't do anything about the high costs. It just forces some people to buy costly insurance even if they're healthy.

And at what IQ do we start cutting people off? Do we euthanize or deny all care to everyone under 70 IQ? Or maybe under 100? What's extraordinary measures? Feeding tubes shouldn't be viewed as extraordinary. Nor are IV's, and antibiotics are not. One problem with medicine today though is that a lot that once was extraordinary now is common. Most babies that spend any time in an ICN will have very high hospital bills.
Quote:
Originally Posted by Howest2008 View Post
The only way that medical science can ever find a cure to the disease that this baby has is to treat the baby , see if there are any clinical trials that the baby can be placed in " and who knows " maybe she/he could be the vessel that a cure is found for this terrible disease.
Quote:
Originally Posted by malamute View Post
But in that article, there was no extraordinary care ever mentioned -- no organ transplants. Just some oxygen, IVs, some antibiotics, and a feeding tube. Her parents are caring for her at home.

I would agree that this little one shouldn't be first on the list for organ transplants -- but that's actually not even apparently an issue. IVs, oxygen, feeding tubes, occasional antibiotics is nothing special.
Quote:
Originally Posted by BigDGeek View Post
Well, of course it should...if that's what nature intends. I don't think anyone is advocating euthanasia in this case...at least I'm not. But I don't think the baby should be treated aggressively either. Palliative care only, IMHO.
Quote:
Originally Posted by Oldhag1 View Post
Where did the $1,000,000 in medical costs come from then? Not just IVs, feeding tubes, oxygen, and antibiotics.
Quote:
Originally Posted by Howest2008 View Post
I agree to disagree with you the medical community do have " gene therapy for genetic defects " see the link that I have provided below.

Gene Therapy for Diseases | ASGCT - American Society of Gene & Cell Therapy

Everyone needs to listen to Malemute.

When I saw the title for the thread, I thought I was going to find a story about a brain dead child on a ventilator. That is not the case.

It appears that her current care is completely supportive. The only concession is the feeding tube, and the reason for that is the cleft lip. Cleft lip is usually repaired between two and six months of age.

The million dollar price tag could indeed represent what most would consider palliative care, including antibiotics for infections. It reflects the expense of medical care, and expensive does not necessarily equate with heroic.

It might help to know a little more about Pearl's condition:

http://www.carterdatabase.org/hpe/ar...Management.pdf

There will be no gene therapy for this defect. There is no way to unring the bell once the brain has already developed.

I also wondered about the decisions Pearl's physicians have made concerning her care? Would they have done things that would not be considered ethical in making those decisions?

http://www.ncbi.nlm.nih.gov/pmc/arti...00449-0050.pdf

There are four basic principles in medical ethics: respect for autonomy, beneficence, non-maleficence, and justice.

The principle of autonomy tells us that patients have the right to make decisions concerning their care. In Pearl's case, her parents speak for her. That means they had the right to decide not to have an abortion and they have the right to participate in making decisions concerning her care now.

Beneficence and non-maleficence work in harmony. The physician must offer treatment that results in net benefit to the patient. So we must treat Pearl in a fashion that results in the most benefit to her.

So far, so good.

Now we come to the concept of justice. As the author of the piece notes, justice equates to fairness, and that is really the topic of this thread. We are asking whether it is fair to spend this money on a child with Pearl's disabilities. Is it just to do so?

The physician must offer treatments that have a moral basis. This means the doctor does not have to offer a procedure that the profession would deem futile. Most often, the issue of futility centers more on discontinuing care than it does on starting it. There is a photo of Pearl in the linked article. It looks as if she was vigorous in the nursery and did not need intubation or a ventilator. Her doctors did not face having to decide whether to help her breathe. Her treatment had no issue of futility.

The physician has a responsibility not to waste resources. In this country, we have decided that being mentally or physically handicapped does not disqualify you from sharing in the money we spend on medical care. So it is indeed just to spend money on Pearl.

The author lastly considers the concept of scope, the difficulty in resolving conflicts between the four principles. The article is only four pages. I encourage everyone interested in this thread to read it.

My conclusion is that Pearl is entitled to the care she receives, just as we would offer that care to any other child with multiple handicaps. The principle of autonomy gave her parents the right to decline abortion and participate in decisions concerning her care. The principles of beneficence and non-maleficence demand that she receive care that results in the most benefit to her and the least harm. Justice demands that her doctors not offer futile care and that they plan her treatment in the most cost effective manner they can.

Since she qualifies for public assistance, she should receive it.
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Old 11-01-2012, 02:36 PM
 
6,993 posts, read 6,326,796 times
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Quote:
Originally Posted by wjtwet View Post
No matter what is done for all of us we are going to die so why spend any money on anyone?
You are being deliberately obtuse (at least I hope it's deliberate) - I will leave to you amuse yourself with yourself...
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Old 11-01-2012, 02:44 PM
 
6,993 posts, read 6,326,796 times
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For any who are interested - Erik Brown's (father of Pearl Joy Brown) blog: Pearl Joy Brown

I read it and shake my head in wonder....
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Old 11-01-2012, 03:19 PM
 
14,944 posts, read 8,558,182 times
Reputation: 7361
Quote:
Originally Posted by claudhopper View Post
I may resemble that remark. I am pro-life, but birth is natural, it typically does not entail prolonged extra-ordinary means to sustain the life created. For myself, I don't want to be hooked up to something that breathes for me, keeps my heart pumping or feeds me, when improvement is not possible, and there is no quality of life.
So if this child cannot live outside of radical medical intervention on a daily basis, then I would say let nature take it's course.
But that's cold blooded republicanism ..... shame on you

It's so much better, and more honorable to just abort 1 Million healthy children each year, and use the savings to financially enrich the medical establishment by keeping a severely disabled child on extraordinary child support to extend the child's life for 6 months.

You right wingers ... don't you all get anything?
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Old 11-01-2012, 03:21 PM
 
Location: Georgia, USA
37,032 posts, read 41,094,361 times
Reputation: 44970
Quote:
Originally Posted by GuyNTexas View Post
But that's cold blooded republicanism ..... shame on you

It's so much better, and more honorable to just abort 1 Million healthy children each year, and use the savings to financially enrich the medical establishment by keeping a severely disabled child on extraordinary child support to extend the child's life for 6 months.

You right wingers ... don't you all get anything?
But this child is not on "extraordinary" support. Expensive does not mean "extraordinary".
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Old 11-01-2012, 03:35 PM
 
Location: Fort Worth Texas
12,481 posts, read 10,206,647 times
Reputation: 2536
Quote:
Originally Posted by ray1945 View Post
You are being deliberately obtuse (at least I hope it's deliberate) - I will leave to you amuse yourself with yourself...
I see you can not answer.
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Old 11-01-2012, 04:39 PM
 
Location: My beloved Bluegrass
20,112 posts, read 16,092,479 times
Reputation: 28292
Just to put the cost of Pearl's medical care in perspective:




I know that those figues are from 1998. What I found from 2008 for the last year of life medical costs was that the last year of life cost depended on region. In Los Angeles it averaged $93,842 while in Minnesota it was $53,432. Bottom line, that is significantly less than the over 1 million that has already been spent in Pearl Joy's 12 weeks.
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