Winds of Change.NET: Bioethics and "The Culture of Death" (Updated)

May 2, 2006

Bioethics and "The Culture of Death" (Updated)

by Joe Katzman at May 2, 2006 12:31 AM

UPDATE: See a response from a relative via our comments section. Right Reason offers an update and discussion of the situation that is both concerned and sober. It notes that: "At this point, the hospital plans to keep Clark on life support for the time being, and will make a further decision on Tuesday, May 2. If the hospital pulls the plug, and if no other hospital agrees to take her, Clark will die."

John Hawkins of Right Wing News is reposting an urgent item from Democratic Underground. Yeah, you read that right. He looked into a post that was brought to his attention, personally talked to the people involved re: their sister at St. Luke's Episcopal Hospital in Houston, TX, and summed the situation up thusly:

"She told me that her sister recently had surgery for a heart condition. After surgery, she developed an infection and that's why she's so weak and needs a respirator to breathe. Again, her sister is not brain damaged, she can speak, and she does not want the hospital to let her die" [JK: actally, cease treatment - keep reading].

Those of us who have read Wesley J. Smith's well-documented book Culture of Death : The Assault on Medical Ethics in America will not be surprised (nor is he - he's writing about it on his blog). This sort of thing is not an outlier, and in fact fits into mainstream medical thinking these days. That it comes from "bioethics" committees just adds insult to injury. The DU post explains the drill:

"The hospital ethics committee met the day before yesterday and concluded that Andrea's treatment (respirator and dialysis) should be discontinued. We have ten days to move her from that hospital or they will "pull the plug" and let Andrea die. Andrea, until a few days ago, when the physicians decided to increase her pain medication and anesthetize her into unconsciousness, was fully able to make her own medical decisions and had decided that she wanted life saving treatment until she dies naturally. We have learned that this is part of the process, when hospitals decided to declare the "medical futility" of continueing treatment for a patient. But, this is not a Terry Schiavo case; not anything like it. Andrea, when she is not medicated into unconsciousness (and even when she is, and the medication has worn off to some degree) is aware and cognizant. She has suffered no brain damage to the parts of her brain responsible for thought and reason, or speech....

There is also some disagreement as to whether Andrea is really in that much pain, as well. When she is not medicated to this degree, and she sees her son, Charles, she smiles. She also mouths words (Andrea is very vocal, normally, even with a trach, and asks for food, etc., when she is not medicated to the gills). Once again, this is not like the Shiavo case, where there was brain death. Andrea has voiced her wishes, over and over again, and if she were not on so much pain medication, she would voice them again."

It gets worse. John Hawkins:

"Moreover, disturbingly, according to Ms. Childers there is a doctor at St. Luke's Episcopal Hospital who has examined her sister and said that he thinks she has a chance to recover. Imagine that, folks -- being sick, having the odds against you, but wanting to fight for your life -- and having the hospital that's treating you cut you off at the knees when you're at your most vulnerable."

Not hard to imagine at all, if you've been paying attention. Folks who want to help can find contact information in the DU post, or they can contact John.

From a larger perspective, this case highlights some issues that are only going to become more important as the number of elderly people in our population spikes. As some of the Amazon reviews for Wesley J. Smith's excellent book note:

"The weakness in Smith's book is his failure to address the very hard issue of how to allocate scarce medical resources. One may rightfully deplore the spread of utilitarianism as the criteria for making these decisions, but until the humanitarian approach develops a way of measuring the trade-offs involved in medical care, the utilitarian approach cannot be dismissed entirely."

Reviewer Robert Strangl nails it:

"The main weakness I see is that there is little consideration of the economics involved except for accasional references to managed care versus fee for service insurance. There is no discussion of the fact that traditional medical ethics, including the Hippocratic oath, arose in a world of private patients. When people chose (and paid) the physicians that treated them, the medical profession could hardly exist without patients' confidence that their interests would be paramount to those they gave such power over their lives. The treatment of those who couldn't pay helped assure those who could. The advent of insurance provided by third parties, employers or governments, was bound to change things. Few people can choose a job based on whether the insurance provided will pay the doctor of their choice. With payments coming from an insurer not selected by their patients, medical practitioners' loyalties had to be divided. We could expect thinkers to rationalize the division."

TAANSTAFL, folks. There Ain't No Such Thing As a Free Lunch. The upside of third-party provided health care is that more people can receive treatment. The downside is that there is a price, and one part of that price is loss of control over that treatment.

At the end of the day, medical resources have to be allocated somehow. Worse, since we all sicken and die, demand for these services will always outstrip supply. Handing care over to large systems, be they governments or HMOs, inevitably results in the large payers' priorities moving to the fore with respect to health care decisions.

It is a corrupting influence, not in the sense of under-the-table payoffs (though that may happen) but in the sense of health care having its fundamental calculus and rationale systematically altered. Corrupting, too, in that it now makes doctors "accomplices to fate" rather than unmitigated protectors, and as such potentially to be feared as well as admired. In the case of full government involvement, of course, additional corrupting factors come into play: the corollary seeking of control over citizens' private lives to minimize costs (incl. "the new paternalism"), the subsitution of "who you know" for money as a gateway to treatment, separate treatment systems for the political class (already present in Canada), etc.

The Clarke's case is a good example of that corrupting influence on a very human and immediate level. They are not alone, are not even terribly unusual, and are in many ways a harbinger of things to come.

Navigating between the issue of large groups without adequate medical coverage and the potential downsides of third-party systems is a journey between Scylla and Charbides. As our societies graple with issues of aging populations and health care funding, we need to remember the Clarkes, and keep in mind that every option has a cost. Some of them every bit as terrifying as the situations they're supposed to remedy.

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Comments

#1 from matoko_doctor's_daughter at 6:11 pm on Apr 25, 2006

My friend Haaken just lost his father to cancer.
He was triaged out of the Swedish healthcare system because of his age, deemed too old for surgery and chemo.
If you have limited resources and uncovered clients there is only one way to spread resources further, and that is, everyone gets less.
My father has always said that America will see socialized medicine in my lifetime.

#2 from Peyton at 6:22 pm on Apr 25, 2006

There is more information and discussion on this at TexasSparkle, the new blog in Houston:

http://blogs.chron.com/texassparkle/2006/04/what_value_is_life.html#comments

' I asked Lanore why she thinks the Doctors decided that Andrea should be taken off life support. She said "You know Anrdea has many friends and is part of about a dozen online crochet groups. She loves crafts. But to someone who downhill skis I suppose that doesn't look too exciting. I think the Doctors think her life sucks." '

#3 from Davebo at 6:36 pm on Apr 25, 2006

Give it a few days. There is more to this story than you have been told so far I suspect.

I know a lot of staff at St Lukes and while they aren't perfect, they are part of the reason we have perhaps the finest medical facilities in the world.

I can certainly understand the family is upset, but I think it's too early to judge with only one side of the story being told.

I will say this. It's possible this really is some unthinkable travesty. But there is no way to ascertain that from just statements of family and friends. In any event, it's a heartbreaking story that repeats itself on a daily basis in hospitals across the country and without authoritative facts, probably not the kind of thing to be hashed out in the blogosphere.

#4 from Gordon Daugherty at 6:53 pm on Apr 25, 2006

I am a physician and have been involved in my share of pull-the-plug decisions, all back when it was simply a matter between the doctor, patient, and/or family. I also live in Texas and was myself not aware of this futility law.

However, beware the assumption that the ethics committee made their decision because they think the patient's life 'sucks', as one comment said. We don't know what the medical facts are in the case; I can almost guarantee they must be grim. Anyone who thinks this committee isn't aware of the issues here, and the possibility for them to be painted in the worst possible light, is simply mistaken.

That these decisions have to be made, even back in my day with no committee to pass responsibility to, is the toughest job in medicine. Please try to assume the committee is in a very bad spot, completely aware of it, and trying to do the right thing. We can argue and disagree what the right thing is but please don't impugn this committee; they agreed to serve knowing what was ahead. Would you have done the same or just said, "Not me; let someone else do it"?

Addendum: hospitals in Houston are so full that cases are being transferred as far as Lufkin, 120 miles north. A former colleague of mine is having emergency heart surgery this morning yet, before he could be accepted from his little farm town as a bona fide emergency, a hospital room had to be found before he could even leave for the Houston ER--this took over 4 hours. Limited resources are a fact--constructive ideas always welcome.

#5 from Joe Katzman at 6:54 pm on Apr 25, 2006

St. Luke's refusal to discuss is going to hurt them; and it means that one side is all we're likely to get unless the pressure becomes really intense. But if they won't provide authoritative facts, people are going to go on what they have.

Which is reasonable, given that if treatment is discontinued, this woman will likely die. What isn't reasonable is to use the institution's own refusal to discuss the case as a rationale for holding off on discussion of the issue because of "insufficient information." Can you see the Catch-22 at work in that?

I do agree that that this does repeat itself on a daily basis, and that's precisely why it's something that needs to be raised politically and hashed out - which means the blogosphere too. You'll note that I pointedly avoided singling out St. Luke's as any kind of special den of iniquity here. The issues are much broader and deeper than that.

If the flock of blogs approach leads to coverage & wider discussion, plus a delay in the decision not to treat, that would be a pair of very positive things.

Meanwhile, if we do find more authoritative information re: what's going on, I'll happily add that to this post and include it in our coverage.

#6 from Gordon Daugherty at 7:29 pm on Apr 25, 2006

St Luke's 'refusal' to discuss the patient's medical details is based on the fact that it's illegal to do so without permission. This also prevents them from releasing anybody's medical information without permission, not just in controversial cases. Presumably this protection of patients' privacy is a good thing; if not, it's still the law.

If the family wants their loved one's medical details released to the press and the blogosphere, all they have to do is say so.

#7 from Gordon Daugherty at 7:33 pm on Apr 25, 2006

And, BTW, Mr Katzman, where did you get the partial headline "... CULTURE OF DEATH" since it's in quotes? Is that the sort of intro that fosters reasonable discussion?

#8 from Gordon Daugherty at 7:36 pm on Apr 25, 2006

Ignore #7; I see the book title.

#9 from Joe Katzman at 7:40 pm on Apr 25, 2006

Re #6 - and they should, I hope they do.

"If the family wants their loved one's medical details released to the press and the blogosphere, all they have to do is say so.

#10 from matoko_doctor's_daughter at 8:28 pm on Apr 25, 2006

If the family wants their loved one's medical details released to the press and the blogosphere, all they have to do is say so.

Why would they do that? This way they can present their side of the situation and St. Lukes can't say sh**.
I agree with Gordon.

Note that the text is sprinkled with "not like Schiavo" statements.
Certainly the release of the cat-scans and the trial transcripts damaged Terri's parents credibility.

#11 from Dusty at 8:55 pm on Apr 25, 2006

I certainly like to hear from the son on the situation, too.

Re the hospital determination, I suppose there is a letter that has been sent by the hospital to the guardian (son?). If the guardian has employed the lawyer mentioned, then that ought be available.

An information dump is needed and it behooves the family to get that started. The sooner the better.

#12 from John Hall at 8:56 pm on Apr 25, 2006

Gordon (#6) is correct. HIPPA established the grounds of "protected health information" (PHI), and St. Luke's Episcopal Hospital must follow their documented privacy procedures or run the risk of a visit from Office of Civil Rights (OCR)--or worse.

As for the health care system debate, there are so many issues that get bundled into the Health Care Debate--and unfortunately, each issue is really heavily charged emotionally--that I'm not surprised that it has become a "Culture of Death"--literally or figuratively. Tort Reforms fit into the discussion just as much as the Right-To-Die/Live issue. Granted, doctors can be the victims of abulance chasers or some person who actively neglected their body/health until it was too late, and at the same time, there are doctors who have been known to show up for work trashed/geeked out of their mind before performing delicate surgeries resulting in the cliched "Oops. We removed the wrong organ."

As #4 stated it, constructive ideas are welcomed, but the utilitarian approach is about as good as we can do it under our current material/political/social capital constraints.

#13 from Thorley Winston at 11:56 pm on Apr 25, 2006

I have to agree with Davebo and Gordon on this one. There is more than one side to the story and St. Luke's Episcopal Hospital is prevented by law from getting their full side out in public. If the family has the ability to allow the hospital to discuss the patient�s case (although if she�s still competent, it may be up to her to make that call) but chooses not to do so, it�s prudent then to question how much of what we�re told is accurate and how much is being exaggerated or distorted by an aggrieved family member.

Something to keep in mind before rushing to condemn the hospital on so little information.

#14 from Amazed at 4:57 pm on Apr 26, 2006

This is very much comparable to the Schiavo circus. The Schindlers excerpted small snippets of video out of many hours in total and released ONLY the snippets that purported to show excatly what it was that the Schindlers wanted the public to see. Just to make sure that people understood what the Schindlers intended they carefully titled and labelled the snippets.

To this day they refuse to release the video in its entirety because it would plainly demonstrate how they distorted and misrepresented (blatently lied) because they couldn't inflame and incite with the truth.

The only way they could inflame the public was to lie, misrepresent and distort the facts, science, evidence and testimony. What they had to say about the bone scan was not only entirely untruthful (read the autopsy report) but was clearly calculated to cast suspicion about the existance of a massive coverup and about the conduct of Michael Schiavo.

The Schindlers and their supporters dug up Carla Iyer and clearly coached her as to what would be most inflammatory- the problem is she apparently got out of control and carried away with her wild allegations- especially the part about having called the Schindlers to inform them of the multiple alleged murder attempts. That piece of embellishment totally destroyed her credibility along with the Schindlers since as Judge Greer pointed out it was simply impossible to beleive that if these events had actually occurred (the phone calls to the Schindlers) there is no way that the Schindlers would have failed to call Ms Iyer as a witness during the original proceedings.

There is no way in hell that the Clark family will sign a release and waiver so the hospital can reveal the medical truths, the medical facts or the medical history. This family doesn't want the TRUTH to come out because the TRUTH won't get people all fired up to lay seige to the hospital and flood it with phone calls and emails. The truth won't get people to make threats against the hospital, its employees or any government official that gets involved. The truth won't lead to marches and protests.

The last thing this family wants is for anyone to know the truth.

Which is not to say that this family is not suffering or that the family simply cannot face the reality or is overwhelmed and unable to cope.

From the statements of the family it appears Andrea has great insurance and the hospital has provided her with care since November 2005. Perhaps the rest of the family has not received the benefit of support and counseling that they need.

Obviously there is no dispute that a tragedy has taken place.

Medical science does have its limits in overpowering the forces of nature and gods will.

Unfortunately, as has been proven by the Schindlers, there is no limit to the lies, misrepresentations and distortions that a family will resort to in order to try and get their own way.

#15 from Thorley Winston at 6:54 pm on Apr 26, 2006

Another thing, under Texas Law (click on my name for the link), when there is a dispute between the wishes of patient (or their family) and what the physician thinks, it goes to the hospital ethics committee to try to resolve the dispute. The family had the right to participate in that meeting and should have received a written report of the committee�s findings.

IMO before rushing to second-guess the decision of the hospital (who again BTW are prohibited from law from releasing any information about the patient�s condition without her consent or the consent of her guardian), we ought to insist that the person screaming �they�re killing my sister� release a copy of that report.

#16 from M. Simon at 10:25 pm on Apr 26, 2006

#12,

The father of modern surgery Halsted (nice street in Chicago named after him) was a heroin "addict" while he performed delicate surgery.

BTW Edison was a heroin "addict".

#17 from Mark Buehner at 10:27 pm on Apr 26, 2006

Heroin has to be the one drug scare quotes arent needed around 'addict'. I've never seen nor heard of a casual heroin user.

#18 from M. Simon at 12:06 am on Apr 27, 2006

Mark,

It is unfortunate that what so many know ain't so.

There are casual heroin users.

In addition what we call "addiction" probably is self treatment for other chronic problems like PTSD.

The new head of the NIDA has come significantly towards my estimation and is moving away from the "drugs cause addiction" idea.

You can read about why a lot of folks use heroin here:

http://powerandcontrol.bl*gspot.com/2004/09/heroin.html

The DEA is very strong in the misinformation department. After all their jobs are on the line. If drugs are a symptom of underlying medical problems then the DEA is useless. For instance child abuse is a big cause of PTSD in America. The DEA has no dog in that fight. So they must keep telling you "drugs cause addiction".

Of course it is up to you what you are willing to believe.

#19 from yvonne at 1:07 am on Apr 27, 2006

I have forwarded everyones comments to the sister of Andrea Clark.

#20 from yvonne at 1:12 am on Apr 27, 2006

Posted at the request of Melanie Childers:

My name is Melanie Childers and Andrea is my sister.
I am NOT the next of kin in this case, Andrea's son, Charles, is. Charles is 23 years old and he is frightened to death of the news media. He's just a kid and he wouldn't know the first thing about releasing information under the HIPPA Law. Moreover, why should we spend our precious time on that issue, when we only have until Sunday, the 30th of this month, to get Andrea moved to another facility?

These facts remain: St. Luke's is going to withdraw life support from Andrea Clark on April 30 if we do not get her moved from that facility. They are allowed to do this under the provisions outlined in the Texas Futile Care Law. With or without the family's permission; with or without the patient's permission.

As for "scarce resources," St. Luke's is not fully using the resources that it has. I have yet to go to see my sister in Intensive Care and seen all of the beds taken up. On the contrary--most were empty. If you don't believe me, go check it out for yourself.
Anyone can get into the ICU units there long enough to look into the rooms and see if they're all occupied.

When and if this is all resolved, we will see to it that Charlie (if he agrees) gets the proper paperwork to release St. Luke's from liability, so that they can tell "their side." In fact, I have THE letter right here on my computer from the ethics committee that I can release, once our attorney agrees to it. This letter states that Andrea has "intractable pain" in the sacral region.

What they are talking about here is a BEDSORE. My sister ought to be let to die because of pain from a BEDSORE? A BEDSORE that she shouldn't even have, if they were doing their jobs properly?

And, while I'm at it, let me tell you this: Andrea paid for her insurance. She paid for her insurance out of her limited income and she ought to receive what they promised to her. This is not an issue of limited resources--this is an issue of simple contract law!

How DARE an insurance company go behind a patient's back and put pressure on a hospital to end that patient's care because it's too expensive for their bottom line? HOW DARE THEY?

How DARE Houston area hospitals act in collusion and refuse to accept a patient deemed "futile" simply because another Houston hospital has given notice they will not treat that patient anymore!

How DARE one single physician have THIS much power over anyone's life! No second opinion, nothing, just "you're futile," and poof!

And, how DARE that physician hold such a meeting, condemning one of his patients to die, and then GO ON VACATION! And, if you don't believe me, why don't you just call up St. Luke's Episcopal in Houston
(832-355-1000) and ask for Dr. Ron Giveon?

And, while I'm at it, how DARE you insinuate that we are lying about anything we've written about! You think we want to spout our personal business all over the net and throughout the news media? You think that makes us feel comfortable as a family? You think we'd come and ask the public for help, if we weren't frightened to death of what they're planning to do to our sister?

This case is distinct from the Shiavo case because we're united as a family in this. One part of Andrea's family is not fighting the other to end her life, in this case.

And Andrea is not brain dead. We would not be fighting this battle if Andrea were brain dead. She has given us clear orders to take her off of life support if she becomes brain dead. And we will do that. Is that the dispute here? Should we produce the paper that she wrote on, when they tried to talk her into turning off the respirator, where she wrote, "I don't want to die. I want to live."

What do you think St. Luke's is going to tell you?
That they aren't intending to "pull her plug"? That she's an appendectomy patient? That she's brain dead?
None of these things are in dispute.

What is in dispute and what should be in dispute in Austin, TX in the legislature, is this law that allows something like this to happen!

#21 from David Blue at 5:45 am on Apr 27, 2006

Good luck. I hope life beats death this time.

#22 from matoko_doctor's_daughter at 2:32 pm on Apr 27, 2006

Yvonne, if what you say is true, get a lawyer.
Certainly the Schindlers did that.
Take your case to court, not to the media and the blogverse.

Schiavo left a bad taste in a lot of people's mouths here. Or it should have.
Like Amazed said, the "balloon video" was three-tenthousandths of the thirty-plus hours of video tape collected.

#23 from matoko_doctor's_daughter at 2:36 pm on Apr 27, 2006

What is in dispute and what should be in dispute in Austin, TX in the legislature, is this law that allows something like this to happen!

No.
Get a restraining order to keep them from turning off life support, if your case has legs.
Sorry, we're skeptics here now.

#24 from matoko_doctor's_daughter at 3:57 pm on Apr 27, 2006

sorry, i should have addressed that to Melanie.
Perhaps Yvonne could forward it to her.

#25 from Phil Smith at 4:06 pm on Apr 27, 2006

"He's just a kid and he wouldn't know the first thing about releasing information under the HIPPA Law. "

He writes a letter to St. Luke's saying "you can talk about my mom's case". It's very simple. It has to be in writing, it has to be signed.

I had a much longer and very detailed post typed up, but I'm going to leave it at this. How dare we? Well, you asked for help. We're asking for data. I have a certain amount of expertise in how health insurance works in Texas, and personal knowledge of the quality of care in the Medical Center, and your story flatly contradicts my experience.

#26 from Thorley Winston at 4:46 pm on Apr 27, 2006

I had a much longer and very detailed post typed up, but I'm going to leave it at this. How dare we? Well, you asked for help. We're asking for data. I have a certain amount of expertise in how health insurance works in Texas, and personal knowledge of the quality of care in the Medical Center, and your story flatly contradicts my experience.

Agreed too much about this story just doesn�t pass the smell test. The people most knowledgeable about Clarke�s actual medical condition (anyone else doubt that this is a case of "medical futility" merely because of a �bedsore�?) are prohibited by law from talking about it. There was a process in place for challenging the physician�s decision and a written report which AFAIK has yet to be released which could potentially shed some light on what actually happened. Instead we�re left with hysterical rants about insurance companies, doctors acting in �collusion� and lack of a �second opinion� (even though under TX law, this decision would have been reviewed by the hospital ethics committee), and calls to harass a physician (or rather his nurse) at the hospital.

#27 from David Blue at 8:03 am on Apr 29, 2006

Woo-hoo! WOO-HOO!!

Good news! (link)

Life wins!

Thanks to Democratic Underground! Thanks to all the good people who helped or even just prayed for this!

:) :) :) :) :) :) :) :)

Semi-oops - but not enough to cancel the good news. Stay in touch here: (link)

Latest: Problem with Andrea Clark's Transfer - Updated (link)

Gaff: "It's too bad she won't live! But then again, who does?"
- Blade Runner (1982)

#28 from John Hall at 4:11 pm on May 02, 2006

#16,

I'm not disagreeing that there are doctors who perform their practice under the influence of drugs, alcohol, or lack of sleep. However, when one of those smucks screws up--and you or a loved one is harmed in the process--it provides little comfort to think that "the father of modern surgery Halsted used heroin and performed surgeries". Heck, the doctors in this case could be complete sober and well-rested and could still be screwing up.

The original point of my post was to state that the raising costs of health care are so complex between the interactions of the doctors, lawyers, hospitals, politicans, marketplace, and insurance companies that there really isn't a quick/simple fix. As the post put it, "TANSTAFL, folks. There Ain't No Such Thing As a Free Lunch." We are all arguing over who should bare those costs. The woman on life support can't bare those costs, and the hospital or insurance company doesn't want to bare those costs. Now what? Appeal to the Blogosphere and Media Grandstanding?