Life as an Extreme Sport

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.

The Daily – Toward Insuring Immigrants

May 7, 2006 Kelly ...and everything else, 2006, Academics, Spring 06, The Daily

Toward insuring immigrants
2006-05-01

The older Asian woman tugs insistently at the young blonde doctor’s coat, pulling her out into the pouring rain, talking in a foreign tongue.

The doctor, a new intern, is confused but following. What she finds shocks her: a young woman by the dumpster, face lacerated and in need of stitches.

The intern tries to convince the young woman to come inside, but in broken English she refuses. She’s afraid. She’s an illegal, as is her mother. There was an accident in the factory, could she please be stitched up?

Time slows and the intern faces her options. Just as fast, time snaps back into place and the intern slowly moves around the hospital, gathering the supplies she’ll need to stitch the laceration in the parking lot.

She gets the young woman, now her patient, to promise she’ll come back to have the stitches removed. The woman promises and disappears. She never comes back.

Chances are good that if you’re a fan of the television show Grey’s Anatomy, this scene is familiar to you. After all, it played out during a first-season episode, with Dr. Izzy Stevens as the young intern treating the illegal Asian immigrant.

Chances are also good that you’re aware that there is a large immigration rally this Monday afternoon.

Smell a coincidence? I didn’t think so.

Immigration — legal and illegal — is a contentious issue in our country. So it only made sense to talk about the issue of illegal immigrants and the strain placed on our medical system.

To be very clear on my position, I support immigration.

I think it should be easier to immigrate to this country. I think that if people honestly believe that if those farm and sweatshop workers just weren’t there Americans would step up and harvest those berries in the burning sun or spend hours a day over a sewing machine for low, low wages, they are, in a word, delusional.

No offense.

Illegal immigration does more than impact the theoretical jobs available for Americans (legal immigrants or those born here).

It seriously impacts our hospitals, in two ways.

First, I suspect we have all been in the situation where we’re in the ER because we’ve been sick, or injured; perhaps you were kicked across the room during a slightly rowdy party, breaking your wrist.

But I digress. You sit in that waiting room, and you wait. Depending on what’s wrong, you wait.

Depending on the time of the day, and where you’re located, if you’re a non-emergency case, you can wait for quite a long time.

As many before me have pointed out, waiting often happens because people who don’t have insurance are using the ER as a place to receive basic medical care.

Any hospital in the United States that receives funding from Medicaid is required to treat any patient who appears in the ER.

What this means, practically speaking, is that anyone without insurance tends to end up in the ER to have non-emergency issues treated.

That person’s lack of payment is ultimately passed on to those who can pay. This is the second significant impact illegal immigrants have on our hospitals.

I don’t think this translates into throwing all the illegal immigrants out, locking down the country and building giant walls, and not just because it’s not terribly practical.

What I think this means, at least from a big and cuddly humanist point of view, is that we need to fix the system so illegal immigrants can pay into insurance policies and, even more importantly, not be afraid of accurately reporting address and other information to the hospital itself.

It might be woefully idealistic, but I believe that if we remove the fear of deportation, illegal immigrants will be more inclined toward providing accurate information and working with the hospital to cover medical costs.

The Daily – Pharmacists’ moral acumen

May 7, 2006 Kelly ...and everything else, Academics, Spring 06, The Daily

Pharmacists’ moral acumen
2006-04-24

One of the more interesting and underrepresented facts about many women’s health providers — places that are routinely targeted because they provide low- or no-cost birth control for women, as well as access to abortions — is that they often offer other health services, such as flu shots and general health exams.

Sometimes, antibiotics are prescribed.

Most of these clinics don’t have on-site pharmacies, so it is up to the patient to go elsewhere to have the prescription filled.

Or, as was the case with a patient from the Cedar Rivers Clinic, which has facilities in Renton, Tacoma and Yakima, Wash., the prescription is called into a pharmacy for pickup.

Unfortunately, in May 2005, a pharmacist at the Swedish Medical Center outpatient pharmacy took it upon him or herself to decide it was morally unacceptable to receive antibiotics from a clinic that provides access to birth control and abortion, and refused to fill the prescription.

That’s right. A pharmacy refused to fill a prescription based on who prescribed it.

“Well maybe,” you try to rationalize to yourself, “the pharmacist believed that it was an abortion-related complication and they felt complicit?” Ignoring the logic behind that, which basically says that someone deserves an infection, let’s move to another example.

At a Safeway in Yakima, Wash., a pharmacist refused to fill pregnancy-related vitamins for a pregnant woman who was receiving healthcare from Cedar River Clinic. This is a woman who was making an active effort to have a healthy pregnancy.

The Safeway pharmacist reportedly repeatedly quizzed the woman why she needed the pills (seems obvious to you and me, eh?), and then launched into why she was going there.

There.

As if the woman should be castigated for receiving healthcare for her pregnancy.

My friends know that I often play devil’s advocate for pharmacists who decline filling Plan B or chemical abortificant prescriptions on moral grounds.

My reasoning for this is that in some ways you can argue that the filling of these prescriptions does directly force the pharmacist to participate in the providing of a service they morally oppose — what they view, rightly or otherwise, to be abortions.

We do not force doctors to perform abortions on women who want them, and I think it’s reasonable to extend this logic to pharmacists.

But these pharmacy moral-police are overstepping their boundaries when they begin denying prescriptions based on who writes them.

If a pharmacist decides he or she has the moral acumen to decide if someone should or should not have access to antibiotics, what’s next?

Denying someone their AIDS cocktail?

Refusing to fill someone’s prescription for methadone, since maybe they’re lying about having chronic pain and they’re really a heroin user in recovery?

Maybe these morally righteous pharmacists will determine that you shouldn’t have access to any “Class II drugs,” or that you’ll need to provide documentation of your illness before they release the prescription to you.

The potential nightmares can be spun out for a while.

Thankfully, the Washington State Pharmacy Board realizes the potential for abuse, while also recognizing the right of the pharmacist to conscientiously object to some prescriptions, such as Plan B.

Late last week, the board released its first draft of a new rule outlining a pharmacist’s right to refuse prescriptions.

While the exact wording of the rule remains uncertain as it undergoes further revision, so far the indications have been pretty clear: Pharmacists have the right to a conscientious clause only so long as there is another pharmacist on site or closely nearby who can fill the contested prescription.

Which is how it should be. Pharmacists dispense medicine, they don’t practice it.

Category: The Daily

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

[The Daily] – New DNA collection frightening

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

The Daily – Toward Insuring Immigrants

The Daily – Pharmacists’ moral acumen

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