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.

The paper did not mention observed side effects of the drug, if any. American patients are told the following about potential side effects:

  • Nausea, vomiting, abdominal pain, headache, or temporary hair loss may occur. If any of these effects persist or worsen, tell your doctor or pharmacist promptly.
  • Remember that your doctor has prescribed this medication because he or she has judged that the benefit to you is greater than the risk of side effects. Many people using this medication do not have serious side effects.
  • Tell your doctor immediately if any of these unlikely but serious side effects occur: vision changes, yellowing eyes/skin, severe stomach/abdominal pain, dark urine.
  • Tell your doctor immediately if any of these rare but very serious side effects occur: unusual tiredness, easy bruising/bleeding, signs of infection (e.g., fever, persistent sore throat), change in the amount of urine, severe/persistent headache, seizures, confusion, very stiff neck.
  • A very serious allergic reaction to this drug is rare.
  • However, seek immediate medical attention if you notice any symptoms of a serious allergic reaction, including: rash, itching/swelling (especially of the face/tongue/throat), severe dizziness, trouble breathing.

Circumstances, then, alter both medical conduct and ethics.

Of course, 16 percent of the refugees given the drug benefited from it, in that their worms were eliminated and infestations are deleterious for health. Moreover, there would have been possible public health benefits to the administration as well, because people who do not have worms cannot spread them to others.

It is difficult to work oneself into a lather of indignation about the whole business; but from the point of view of medical ethics, the paper is certainly not without theoretical interest.