The Limits of Patient Autonomy
No one these days has a good word to say for paternalism, the notion that someone else not only knows what is best for another person, but that he has the right and even the duty to encourage or make the other person comply with what he thinks is best. Thus one of the sacred principles of contemporary medical ethics is the autonomy of the patient: his right to make an informed decision on what medical treatment, if any, to have, even should his decision be foolish.
In order to uphold the principle of patient autonomy, people in especially vulnerable positions – prisoners, for example – are not to be offered rewards for agreeing either to treatment or to participation in experiments. But evidently there are limits to our belief in patient autonomy.
A paper in the April 19th New England Journal of Medicine describes the effect of giving a single dose of albendazole, a drug that eliminates intestinal parasites such as roundworm and hookworm, to refugees from Africa and Asia before they arrive in the United States. Prior to 1999, such refugees were not given albendazole before departure; thereafter they were.
Administration of the drug decreased the rate of infestation with nematode worms by 77 percent, that is to say from 20.8 per cent of refugees to 4.7 per cent. The trial was not a randomized one, but it is likely that as many African and Asian refugees were originally infested with worms after 1999 as before, and so the large subsequent difference is almost certainly attributable to the administration of the drug.
Interestingly, the authors of the paper, from the Centers for Disease Control and Prevention in Atlanta and the Minnesota Department of Health, do not mention any ethical problems with the mass administration of the drug. The numbers of people treated were large, 27,736 in all.
The treatment seems to have been compulsory; at any rate, it is unlikely that informed consent can really have been sought from many of them, let alone all of them. Besides, if the treatment was not exactly coerced (the refugees could have refused it, even though it meant non-admission to the United States), the situation was similar to that of prisoners rewarded for taking part in medical experiments, a practice that is now forbidden.
Principles that can be put aside for the sake of convenience are not principles, they are preferences. What can be done to one, can be done to all and We the People had best remember that.
I have to wonder what doctors administered these drugss in violation of medical ethics and why they still have licenses-if they still do.
To make your ethical problem even more interesting, you might think about how the people on which the drug has been tested do not necessarily come from the same background as those who are trying to enter the US from some obscure corner of the world. There could be places, for example, where people have an unusual genotype (collection of genes) that makes the drug deadly. Since that genotype is rare or nonexistent elsewhere, this effect was not seen during its testing phase. So the helpful paternalistic authority, not knowing any better, gives them this drug when they enter the country and — they die. Note that using informed consent for administering the drug will not prevent this hypothetical disaster either.
The real problem is the way the rules are written. What the authorities really want is worm-free people entering the country. The correct way to write the rules, then, is to test for these worms and refuse entry to those who are infested. It’s a good bet that everywhere in the world there are known remedies for worms that are very unlikely to harm the local population. Hence by putting the responsibility for being worm-free where it belongs — on the local medical establishment — rather than by law mandating a particular treatment for everyone whether or not they need it, you get the result you want with very little risk.
This sort of dumbness — using rules to specify a process that supposedly leads to a desired result rather than specifying the desired result itself — is everywhere. For example, children are often required to prove they have been vaccinated before starting school rather than being required to show they are immune to the disease the vaccine is supposed to prevent. For that matter, there’s public school itself. Why do children have to wait until they’re 16 or 18 to end the process? Why not allow any child of any age to pass a GED-type exam and get a high-school diploma, after which there’s no more legal requirement to attend school? Imagine what an incentive that would be for children to study hard, being told that if you pass this exam, there’s no more school for you! I’ll bet it would become common for students to haunt the local library and study on their own rather than waiting to be taught things in school, with most of them passing the exam by age 13, maybe earlier. How the teacher unions would howl! (which, come to think of it, may answer the question of why our government so often specifies process rather than result in its rules and laws.)
Exactly!
“DRUG”?
People living in Gulf States of the USA should take Mebendazol or Albendazol twice annually. I did growing up. So did my children.
Living in the tropics now, I still do.
These are time tested, side-effect free pills which, due to the U.S. govt’s incompetent supernumerary bureaucracy costs $12-15 a dose plus $30-75 doctor visit for a prescription, while any supermarket has them hanging in the pet aisle for $1.95.
Go back to the 19th Century free medical practice or Go Galt.
I say “Go Galt” and decrease the surplus population!
The article muddles the issues by not specifically addressing the ethical issues specific to Public Health.
The treatment is intended to stop the spread of infectious disease from persons arriving from a population where the disease in endemic. That the treatment is also of benefit to the individuals taking it is also a consideration.
An example of what can happen is the tragedy unfolding in Haiti. Before the 2010 earthquake and relief effort Cholera was unknown in Haiti. The disease was introduced by infected relief workers from Bangladesh where the disease is endemic. The organism is now firmly established and has undergone mutation in Haiti. It is now a very serious problem which is not going away. This tragedy could have been prevented.
Nobody has violated ethical norms here. Nobody is forced to take the pill. These individuals have chosen to take the pill as a requirement for entering the US. Autonomy would be violated if they had been given the drug without informed consent and that has not happened although the author makes that unsupported assertion. The requirement exists to protect the general population from a greater harm.
The analogy with prisoners taking part in medical experiments is a poor one. In that case there is no medical benefit to the prisoner and no chance that he would be a danger to the community if he did not participate.
A better analogy would be an individual with TB seeking admission to a nursing home. The choice is either accept treatment for the TB or you cannot be admitted. The nursing home does not have isolation facilities and all of the other patients would be a great risk.
The real news here is that after only a single dose, hence decreased risk of side effects, the drug was efficacious. Albendazole is usually given for a much longer course. The article states that among the 27,700 cases the were no serious side effects reported.
Very well said.
I don’t see it as coercion. If you want to come to my country, obey my rules. Wew used to put candidates for immigration through the ringer at Ellis Island and similar places. Don’t like it, don’t come.
Some of the old diseases, polio, TB, are making comebacks because people try to ride on the herd immunity and refuse immunization.
In the name of God, why are we allowing people with worms to enter the US? Have you noticed a dangerous shortage of black people with low intelligence and no marketable skills lately? Buy guns now. Lots of them.
The opening statement “No one these days has a good word to say for paternalism, the notion that someone else not only knows what is best for another person, but that he has the right and even the duty to encourage or make the other person comply with what he thinks is best. Thus one of the sacred principles of contemporary medical ethics is the autonomy of the patient: his right to make an informed decision on what medical treatment, if any, to have, even should his decision be foolish.” is fallacious. The Federal Government has always had a good word to say about paternalism, it is a hallmark of their operation.
At one point my mom was demented. My dad had died. She wanted to be alone and she was. I tried to take care of her but she did not know she was sick and ‘had the right to live her own life’. Everyone said. the officaldom said. Until she got lost on the street unable to find her way home.
And was picked up by the cops. And restrained in a psych ward. As you can imagine she thought she had been arrested and was a criminal.
Then she got treatment, because they can make you get treatment once you are incarcerated.
Now. What if she had died wandering around outside her home?
So I don’t think sick people know how to treat themselves. Nor does someone having a heart attack really know or need to know what to do. Thats why we have doctors . And indirectly why we pay extra for malpractice insurance.
In your case it worked out.
How about those cases where the God complex is harmful and an innocent, or a perfectly informed patient, refuses to go along with a treatment is locked in a psych ward for no other reason than someone else thinks they know better than the individual? Then held with the bare minimum of contact to loved ones, no access to the outside world other than 1 visit a day, and their life maximumly disrupted.
It can and does happen, and it’s pretty alarming to witness the blaise attitude of those that do so.
Medical ethics is mostly ignored. What you get are the opinions and practices of the doctors, clinics, and hospitals you end up with.
Picking doctors whose ethics are similar to yours is as important as picking doctors who are good at what they do.
Your statement could not be more wrong. There are common ethics that are practiced throughout all of health care, they are so prevalent you will not find substancial difference from one facility to another. I have been an RN for 21 years and I can only guess you are ignorant of how ethical decisions are made as well as the process of how ethical policies are arrived at and implemented.
I’d prefer to say “disenchanted” rather than “ignorant”. Surely, any decent code of ethics would tell the doctor to listen to the patient. But a few sentences in, the doctor often grabs control of the conversation and it takes a Herculean effort to say the other things you intended to say.
Some people make up a list of symptoms to make sure they all are mentioned. Doctors have a name for such a patient: “the man with the list”.
When I seek a new doctor (insurance changes, say, or the old doctor retires) the thing I look for first is a doctor that’s willing to consider me a partner in the whole health enterprise.
Some physicians simply suck. Their issue is not the ethics of health care in general, but their own personal ethics which are much more diificult to mitigate. The problem of physicians not taking enough time is not new nor is it an ethical problem. It is more of a function of a system that until fairly recently wasn’t looking for much participation from patients and frankly the vast majority of patients are not interested in participating, they simply want you to fix them and to do so with often inadequate or completely erroneous information. Sometimes that is because the patient simply lies to you. The flip side is the patient who wants to tell you everything, and I mean everything, much of which is information that is not needed
This is what I tell my patients. If you have a problem with your car and you take it to the mechanic but the same problem keeps happening would you not go to a different mechanic? And is not your body as important as your car? The flip side to that is if you abuse that car and ignore routinr maintenance don’t expect a mechanic to just fix it and no further breakdown to occur.
None of these issues have anything to do with the general ethics of the health care system but it very much can have to do with the personal ethics of individuals, physicians, nurses and patients. As a believer in personal responsibility I very much believe in patient participation of their own health, which I also believe is the biggest innoculation to poor ethics that can harm. For those patients that truly cannot do that, it is truly the nurse who has to be the patient advocate, doing so is part of our schooling. No system is perfect but the vast majority of providers are caring ethical people who work diligently to bring our patients to their highest level of health possible.
And frankly this article does a very poor job of laying out the issues its supposed to be writing about and given the situation its discussing patient autonomy as traditionally looked at has gery little bearing. Quite a disappointing article, which was unfortunate.
they don’t have to take the drug. They have to take the drug to enter the United States of America. That’s political, not medical, ethics. They also cannot bear other socially destructive devices: uranium flakes, aerosolized pathogens, ricin, bombs, counterfeit money.
Visiting the USA is a good thing, but it is not a paramount good thing.
The NSA Is Building the Country’s Biggest Spy Center (Watch What You Say) By James Bamford Email Author March 15, 2012
http://www.wired.com/threatlevel/2012/03/ff_nsadatacenter/all/1
So everyone was given the drug but only 20.8% even had a problem? So basically 79% of these people were given a dangerous drug for no reason at all! And we’re wondering if anything is wrong here? Yeah. I’d say. Why didn’t they test them first, then inform those who were sick of the problem and ask them what they wanted to do? That’s the right thing to do.
The government does not have the right to force them to take the drug, but it does have the right to make it a condition for entering the country.
we shouldnt be indiscriminately killing the worms. We need to negotiate with the worms and recognize their legitimiate grievances