Life as an Extreme Sport

Susan Anne Catherine Torres and Cristina Doe were born 10 months apart, in August 2005 and June 2006, respectively.

Sadly, Susan Torres passed away six weeks after birth. Yet these two girls are connected to one another through a very unusual circumstance: Both babies were born to braindead women.

According to Dr. Winston Campbell of the University of Connecticut Health Center, there are approximately a dozen cases of braindead women completing gestation to the point of delivering a viable fetus in the medical literature.

Further research in the journal of Obstetrical and Gynecological Survey shows another 15 cases of pregnant women in persistent vegetative states remaining on life support to deliver.

While there are few cases in the literature, this is largely because technology has only recently advanced to the point of making this a possible practice.

The idea of leaving a woman on life support to gestate a fetus is a highly contentious issue. There are those who believe all pregnant women should be kept on life support until delivery is possible. There are those who believe it’s up to individual families to make the decision. Then there are those who see a slippery slope of forced pregnancy and believe if a woman is dead she should be allowed to die, regardless of pregnancy.

These positions are all very self-explanatory, and a few years back, this columnist would have been firmly in the camp of “she’s dead — let her die.”

The idea of a woman being kept alive as a fleshy incubator horrified me — it was like a dystopic nightmare come to life. Women die, but their bodies are kept alive to gestate. What’s next — taking that dead woman, hooking her up to life support and then impregnating her?

In the meantime, I’ve realized that this is a non causa pro causa fallacy, the slippery slope at its worst. It’s saying that if A happens, by a gradual and continual process, B, C, D and eventually Z will happen. Z of course is a horribly bad thing, and since it should not happen, A shouldn’t either.

In reality, there is a strong line drawn between the A of keeping a pregnant woman alive a handful of months to deliver a desired fetus, and the dystopic possibilities inherent in Z.

That strong line is biology. It seems the body can maintain a pregnancy while it is braindead for somewhere around 3-4 months. While it’s long enough to attempt to bring a fetus to viability, it’s not long enough to create a pregnancy from scratch.

These days, I fall in the middle ground: I believe it’s a decision that should be made between family, doctors, friends and religious figures — the important people in the individual woman’s life.

That it be a personal decision, not a political or legislated one, is key. There is currently legislation in 27 states that allow doctors, lawyers and hospitals to override the wishes of the pregnant woman or her family. These pregnancy clauses mandate that every attempt should be made to save the life of a fetus, including keeping the woman alive on life support beyond the wishes of her family and friends.

This is where our concerns should be. It shouldn’t be with people who opt to keep their loved ones alive in order to have a piece of them continue to live in the form of a child.

Nor should it be with the people who believe that heroic measures should not be attempted, and mother and fetus should be allowed to die as nature dictated.

Our concern should be with the people who are taking these decisions out of the hands of those immediately affected and placing them in the clinical hands of the disinterested and uninvolved.

This decision, whether or not to attempt a medical miracle to bring a life into the world, is a private one, not a matter of public policy.

[The Daily] – Medicine or Miracle?

July 7, 2006 Kelly 2006, Academics, Bioethics, House MD, Pop Culture, The Daily, University of Washington

Medicine or Miracle?
2006-05-30

A recent episode of the television show House titled “House vs. God” dealt with the idea of faith healing, something that comes up a lot these days in medical journals.

What is the power of prayer? Does faith healing work? Can miracles happen?

As many are aware, there have been multiple studies that attempt to look at these subjects, the strongest being that of the effect prayer has on people.

Unfortunately, even the people running these studies will tell you they are not well designed, and potentially flawed.

This came to light recently when one of the most comprehensive studies on the power of prayer showed that prayer for post-operative cardiac patients actually appeared to have a slightly detrimental effect on the patient.

Perhaps this is a reflection of my interdisciplinary training, but I think the much more interesting questions to ask are why miracles can’t happen and prayer can’t heal.

Some would say that it’s because there is no higher power, deity or God, but do we need such a being to exist for prayers and miracles to work?

After all, couldn’t you argue that a miracle is just that which we don’t understand?

You could quite often say the same thing about our medicine. The typical example is a cell phone in the rain forest, although I’d argue there’s an awful lot of technology and medicine that might as well be (and probably is) “magic” based on how well we understand it.

There is simply the belief, the faith that it will work, because someone is being told it will work.

How is that so different than hearing a faith healer tell you the same?

Of course, we of the rational, medical type say we have medicine. We can take the time to understand how technology works. We can figure it out and we can do the math.

But we cannot and do not fully understand how the body works; we keep finding new things.Miracles keep being rationalized and understood, filed away into things to learn and knowledge to distill.

If we have learned one thing, it’s that the body is an amazing thing.

In the episode of House I refer to, the patient — a young teenage boy — hears the voice of God, and believes God wants him to be a faith healer. Dr. House takes the case on after the boy collapses in the middle of a church meeting, and eventually discovers the boy has a tumor in a certain part of his brain, the result being that he experiences hallucinations — hallucinations he believes to be the voice of God.

Who is to say that the power of the placebo effect isn’t enough to help some people?

After all, we know scientifically and medically that positive thinking does positively affect our health, including helping us recover from illness.

Does it even have to be a placebo? We understand so little of how the brain works, is it so genuinely inconceivable that there are still processes left we don’t understand?

We don’t want to entertain the notion that something can be both real and invisible, quantifiable yet mystical, so it gets filed away as faith-healing fakery and fraud.

But in 10 years, perhaps it will have a Latin name and a textbook, diagnosis and belief, some way to reconcile disbelief and faith (or evidence).

That’s the way knowledge goes: a part of life for both miracle and medicine.

Why should we limit our view of the world to that science we already understand, instead of enjoying the magic and mystery behind those things we don’t?

[The Daily] – Expecting the layman to be a doctor

July 7, 2006 Kelly ...and everything else, Academics, The Daily, University of Washington

Expecting the layman to be a doctor
2006-05-24

You’re in the doctor’s office, and she’s just handed you a form to read. While you’re scanning over the form, she starts to explain it to you. It’s your consent-for-surgery form and it’s telling you what the surgical procedure is, what the goal of surgery is, and what the risks are — from common side effects to rare complications.

This sounds simple and is common sense. It is, in fact, a required step all hospitals must go through in order to maintain accreditation. So what’s the problem with informed consent?

Often, the problem is in what your doctor does. For example, do you understand the following?

“A neurolytic sympathetic blockade of the right stellate ganglion nerve bundle with bupivacaine and a corticosteroid.

“Potential complications include injection into the vertebral artery, phrenic and superior laryngeal nerve block and rarely, intrathecal injection.”

Chances are good that, unless you have a strong medical background or have been subjected to a similar procedure to the above, you have little idea of what that meant.

Yet, it tells you the procedure, the risks and potential for complications. It gives information necessary to make an informed decision. Or does it?

After all, if you can’t understand what is being said, you can’t really make an informed decision.

The problem is, many see doctors as people in a position of authority. Doctors have knowledge, based on their education. Because of this, patients trust what doctors say needs to be done; this is often blind faith.

Or, at least uninformed faith.

According to Art Caplan, director of the Center for Bioethics at the University of Pennsylvania, “The informed consent process has become more of a shield than a doorway,” which protects the doctor and hospital from malpractice instead of empowering the patient to understand his or her treatment.

There are two major problems interfering with the notion of true informed consent: reading comprehension and education/medical knowledge.

The first is very simple: Informed-consent forms, those that you read and often sign before anything from a vaccine to a surgical procedure, are, according to the e-journal of the Association of Medical Directors of Information Systems (TIR), written in college-level language.

The average American adult reads and comprehends at approximately an eighth-grade level.

Writing for an eighth-grade comprehension level does not have to mean dumbing things down.

TIR gives an example of how this can be achieved. Instead of saying: “Adhering to treatment recommendations is often fraught with difficulties, for families have a multitude of scheduling commitments, and may also be highly insecure about their abilities,” doctors and their consent forms can say, “Families often find it hard to follow treatment recommendations. They are short of time. They may also doubt their skills.”

The same information is conveyed, but the second phrasing is much more accessible.

Accessibility leads directly to the second major issue with informed consent: Your average layman is not a doctor, and should not be expected to understand medical treatments, procedures and options.

Many physicians take the notion of informed consent to mean they should provide the patient with all treatment options and potential risks, then allow the patient to make the decision on his or her own.

So long as the physician is explains each treatment option in comprehensive terms and there is no coercion, there should be no problem with the provider giving opinions on the treatment.

In fact, this should be the encouraged norm.

Informed consent stems from a noble idea: That the patient, not the physician, should be making the decisions important to the his or her life.

Unfortunately, the information overload ends up bringing us right back to the position we were originally trying to get away from: The paternalistic doctor making decisions for the welfare and well-being of the patient.

[The Daily] – New DNA collection frightening

July 7, 2006 Kelly Academics, Bioethics, The Daily, University of Washington

New DNA collection frightening
2006-05-15

Computer cracker Adrian Lamo is in trouble again.

Not for cracking any new computer systems, but because he won’t give the federal government a blood sample so it can isolate his DNA and add it to the FBI’s Combined DNA Index System (CODIS).

Lamo apparently isn’t opposed to giving the government his DNA; he did provide the FBI with nail clippings and hair samples. He simply states that giving the blood is against his non-specified religious beliefs.

Those in charge, however, will only accept blood or saliva for the sample (no explanation has been given as to why Lamo has been told he can give only a blood sample).

While it is certainly easiest to isolate DNA from blood, the technology exists to utilize DNA from other parts of the body, including the hair and nail samples Lamo provided.

Now, while Lamo isn’t concerned about giving the government his DNA, I would be, and am.

I’ve known about this program for a while, but here is some background for those of you who are not familiar with it, courtesy of the FBI’s CODIS Web site:

“CODIS blends forensic science and computer technology into an effective tool for solving violent crimes.

It began as a pilot project in 1990, and enables federal, state and local crime labs to exchange and compare DNA profiles electronically, thereby linking crimes to each other and to convicted offenders.

CODIS generates investigative leads in crimes where biological evidence is recovered from the crime scene using two indexes: the forensic and offender indexes.

Matches made among profiles in the Forensic Index can link crime scenes together; possibly identifying serial offenders.

Based on a match, police in multiple jurisdictions can coordinate their respective investigations, and share the leads they developed independently.”

What I hadn’t realized is that the 2004 Justice for All Act expanded the CODIS purview to include samples from all newly convicted federal criminals, including white-collar criminals — people who commit crimes that very rarely leave any traces of DNA at the scene to test.

What, then, is the point of collecting the DNA of these white-collar criminals?

It makes me uncomfortable, because the government has ruled in the past that pieces of your body — your blood, your cancers, your spleens (Hi John Moore!), anything that can be taken from your body — are no longer yours once they are removed.

Including DNA.

It’s considered a consensual donation in medical circumstances, but in forensics, it’s either court-mandated or cast-off/thrown away and thus no longer your property (such as leaving hair at the scene of the crime).

At least that’s how I understand the forensic side of it — I’m sure someone will write in to correct me if I’m wrong.

What this means is that your DNA can be taken, stored, sequenced, analyzed and released to the public without your knowledge, without your benefit. And potentially to your detriment. There are growing fears that DNA samples showing proclivities for diseases will result, in insurance companies denying coverage.

What happens if the government sequences the DNA of one of these incarcerated criminals and finds something of value, something that requires more samples?

Criminals have very few rights over their bodies — will the government then be able to just take what it wants?

It’s concerning.

Granted, these concerns existed when CODIS was implemented to begin with, but many deemed the benefit of DNA samples and ability to match future DNA to known criminals who are at high risk of recidivism (such as sexual predators) worth the potential abuses of having that DNA.

But now we’re talking about people with low rate of recidivism who aren’t dangerous in the sense set up for CODIS, who’re having their DNA added to this system, for who only knows what reasons.

The ethics of this, and the potential for abuse of the policy, is worth thinking — even perhaps worrying about.

The Daily [05-08-06] – Dependency vs. Addiction

May 15, 2006 Kelly ...and everything else, 2006, Academics, House MD, Pop Culture, The Daily

If this looks familiar to some of the longer-time readers, well… it was a busy week. And besides, the original was pretty good in and of itself.

Dependency vs. Addiction
Publish Date: 2006-05-08

I meant this column to be about the idea of informed consent. It’s a subject both House and Grey’s Anatomy have covered in their last couple episodes; something I would call a coincidence if they hadn’t been doing this back and forth of show themes for two seasons now.

But one evening I managed to find myself on the Television Without Pity Web site, in theory rereading the details of those pertinent episodes of Grey’s and House, when I decided I wanted to read recaps from earlier episodes.

That decision led me back to a first-season episode of House titled “Detox.” The theoretical point of this episode was a teenager with bleeding of unknown origin, but the actual point was to examine the vicodin use of the main character, Greg House.

For the few of you who’ve managed to miss this show, the character likes to discover novel ways to take vicodin.

In his defense, he’s missing a good part of one of his thigh muscles and has severe nerve damage from various complications of a blood clot and surgery years before.

House is accused of being a vicodin addict, and is challenged to go a week without taking any. He accepts the challenge, and during the course of the show appears to go through withdrawal, going so far as to break his hand to force his body to pay attention to different pain.

The result? Everyone crows that House is a drug addict.

I don’t agree.

Addiction is a biological and psychological condition that compels a person to satisfy their need for a particular stimulus and keep satisfying it, no matter what the cost.

Dependence is a physical state that occurs when the lack of a drug causes the body to react.

Physical dependence indicates that the body has grown so adapted to having the drug present that sudden removal of it will lead to withdrawal reactions. This can happen with almost any drug.

House is in constant, chronic pain. The physical dependency on vicodin is one that allows the character to maintain a normal lifestyle.

To use analogy to illustrate the point, imagine that a normal, healthy person is akin to a full glass of water. Someone who is in chronic pain is only half a glass of water without pain medications.

Add in a bunch of ice cubes, and the person in chronic pain is brought back up to the normal and functional level of everyone else.

In the case of the addict, toss a few ice cubes in a full glass of water, and watch everything spill everywhere in a mess. That’s addiction.

The chronic pain person needs those ice cubes of vicodin on a daily basis to provide what the body needs to function, but it’s not a situation where they would actively seek out, need, or desire any more than necessary to achieve that state of near-normalcy.

Regular use of some medications is necessary for some people to live a normal life. A diabetic is not addicted to insulin, nor is someone taking medication to control high blood pressure addicted to it.

They are, however, dependent upon it, as a person in chronic pain is dependent upon their drugs to function normally.

Perhaps that’s the thing one needs to consider when weighing notions of addiction or dependency — the person who is addicted does not have improved functionality with their addiction, while the dependent person does.

The writers of House have been irresponsible in how they’ve portrayed the character of House’s dependency, and this causes a lot of grief for actual living and breathing people with chronic pain.

There is a stigma associated with needing pain medicine every few hours. This stigma, shame and fear prevents many doctors from properly treating pain, and prevents many people from seeking out the relief they need.

Category: 2005

[The Daily] – Biological Incubators

[The Daily] – Medicine or Miracle?

[The Daily] – Expecting the layman to be a doctor

[The Daily] – New DNA collection frightening

The Daily [05-08-06] – Dependency vs. Addiction

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