Map of life expectancy at birth from Global Education Project.

Thursday, February 19, 2009

Help me out here . . .

I'm having a bit of an ethical dilemma, which is causing me writer's block regarding a proposal. Does it matter why people choose to accept a physician's recommendation for treatment? In particular, is it somehow just wrong if they have misconceptions about their disease or the way the treatment works, don't accurately understand all of the risks or how things might go wrong, or are basing their decision on factors that probably ought to be irrelevant? In other words, how strong should be our commitment to the official doctrine of informed consent?

Here's some background. I interviewed a whole lot of people with HIV about their treatment decision making, i.e. whether or not to take antiretroviral drugs (ARVs). A few of them said they just did whatever their doctor told them to do, and they really didn't want to be bothered to learn a whole lot of scientific stuff about HIV and ARVs. That seems fine to me, if that's what they want, I'm not going to tell them they are supposed to be better informed.

Most of them, however, said that they based their decision on information. They often said they attended educational workshops, read magazines, talked with their doctors and health educators, used the Internet, etc., and came to an informed decision. But then as I continued to interview them it turned out that they didn't actually know, well, much of anything. They often didn't even know what classes of drugs they were taking. (At the time, there were three major kinds of ARVs, called nucleoside analogue reverse transcriptase inhibitors, non-nucleoside analogue yadda yadda yaddas, and protease inhibitors. The first two block the action of an enzyme that writes the viral genome into the host cell's DNA, but in different ways; and the latter blocks an enzyme that cuts the long polypeptide products of the viral genome into their constituent proteins.) They didn't know anything about the possible side effects of the drugs, except for side effects they had actually experienced; they often thought that drug resistance was a change in their bodies, rather than an adaptation by the virus; and some of them had no concept of viral replication. One woman said that viral load was a measure of how many babies the mother virus was having.

Now, is this wrong, as long as they were taking the meds and keeping themselves comparatively healthy? Sometimes their doctors had talked with them in metaphoric terms, such as virions being "enemy soldiers" and needing to keep our soldiers -- the ARVs -- in the field so they couldn't take over. That's complete bullshit, of course, but it seemed to work. Of course, it may turn out that people who have a better understanding adhere better in the long run and otherwise do stuff we like such as not risking transmitting the virus or becoming reinfected -- which is bad because they might acquire a drug resistant strain. But if I can't prove that, should anybody care? Scientifically accurate knowledge was available to these folks, but evidently not in a form they could understand, or maybe they didn't really make the effort but felt satisfied with whatever ideas did get into their heads.

Is that malum in se? Should I be given taxpayer money to figure out how common it is, and how to explain things to people better? Or would you rather I be stimulated in some other way, as long as the people are taking their pills?


C. Corax said...

Has research been done that looked in detail at medical outcomes and how they might or might not relate to patients' accurate understanding of their diagnosis and treatment?

It seems a shame that some people evidently have tried to learn about their disease and treatment, but remain ignorant in spite of workshops, online research, etc. If a large percentage of folks can't understand the scientifically accurate information, then there's something wrong with the way the information is being presented. I doubt that giving workshop attendees pop quizzes would encourage enrollment, so your line of inquiry would be beneficial. How else to develop a better way educate patients?

RayPublicHealth said...

This is a good question. As a health educator, and a former employee of yours, I have often thought about the metaphors, cartoons, anthropomorphizations (?) that are used to convey health information in brochures, videos, etc. With tuberculosis, for example, it can be hard to explain the difference between latent infection and active disease, and if an analogy or metaphor helps people understand, well, that can be really helpful. The really troubling part is to see that down the line that they don't understand the risks of certain treatments vs. others vs. no treatment at all.

There is also the phenomenon of poor retention of information. Sometimes we patients DO understand initially what the risks are or what is happening in our bodies, but two hours or two days later we've forgotten 90% of it. Maybe it is we who make a summary or analogy to simplify the concepts. Or we prefer to hold onto the picture the doctor drew us rather than all the terminology and details.

Cervantes said...

I really think of Ray as a former colleague rather than an employee.

Anyway, yes, it's true, people don't necessarily retain information that they have in fact been told. But I think there are various reasons for that, and that it's a problem that can be ameliorated, though probably not eliminated.

roger said...

i try to encourage more knowledge or information, so, go for it. if people still take their meds because the doctor said so, well ok. i'm one who would appreciate more and better communication between doctor and patient.

there is some parallel between this situation and the relationship of the populace to political leaders. the doctor says "take this med. i know what's good for you. here's a simple explanation." our former president, and tragically, even our new one, says "you can't know about our secret torture program. trust me, i know what's good for you."

Anonymous said...

Informed consent. The aim is obvious: better informed patients, improved collaboration with doc, better doc/patient partnership, etc.

However. Surely the doc-p relation is first one of trust. The implicit contract (speader-hearer commitments in SA theory) is that the doc will do his best, with all of his knowledge, skill, etc. to cure (relieve, help, etc.) the p. The doc trusts the p to follow his recommendations, carry them out. Both positions have hedges (doc knows p hates exercise - p knows doc is a healthy life style freak.)

It is at heart an asymmetrical relationship *which is rendered egalitarian* through trust. Because of mutual trust, the two parties become humans who both have a fair status and can thus enter into an exchange which will benefit both.

Asking for informed consent (such as when signing a paper before an operation) or hoping for informed ps (selecting for them for ex.), or educating ps beyond what they need to know to *comply* (one’s mileage may vary here!) in a sense undermines the trust relationship. It can be seen as a misguided effort to make the relationship more ‘equal’ - when it cannot ever be. (Even a doc treated by another doc enters this relation.)

It could very well be that patients shun information or ‘tune out’ or exhibit avoidance - it is not their business (which is carpentry, teaching Chinese, etc.) and a certain ignorance is maybe more comfortable, as expertise and high level decision making *cannot be attained.*

I know that I have that attitude vis a vis my dentist - I hardly know what a molar is and prefer not to know; I don’t listen to his explanations, I trust him to do what is best and get on with it. I don’t like to talk about my teeth. Any basic tooth test would garner me a score near to zero, and I have about 4 university degrees.

Your question is a very difficult one and this is just one aspect.