Wednesday, December 9, 2009

Paying psychiatric patients to take medicine raises ethical questions

Here's an article in Treatment Advocacy Center e-News about a team at Queen Mary Hospital in London starting a study of the effectiveness of paying patients with schizophrenia and bipolar disorder to take their medicine. It's not a new idea, points out E. Fuller Torrey, the psychiatric researcher who has written the article and advocates for it. The 136 patients “have a very poor track record for taking their medication” and are all on long acting antipsychotics which they receive by injection every two weeks or so, Dr. Torrey explains. Half of them will be paid about $24 each time they come in for their injection and half will receive no money and will thus be controls. Both groups will be followed to see if the payments make a difference in preventing relapses and rehospitalization.

Now I know it's a common practice in research but it feels wrong. Let me start with the question: Why would you pay people to do something they don't want to do as much as you want them to do it? Some answers: the benefits outweigh the costs. The procedure does no harm. The researchers achieve their objectives. There is freedom of choice for subjects not to take part. And when it comes to severely ill mental patients, say researchers, they may not have the ability to judge whether the transaction is good for them or not because their brains are incapable of doing so (a tack that is also used to permit forcible hospitalization of some patients who might be a danger to themselves or society).

My discomfort is that these acts violate the ethics or morality (take your pick) we live by. Ideally we avoid exploiting groups of people like prisoners or hospital patients or nursing home residents, or even giving the perception of doing so. Who said exploitation? Don't they give up some independent choice to abstain from the research offer? Isn't the offer to pay to take your medicine a more subtle way of coercing behavior that does violate ethics in which people should be free at all times to reject the offer? When you pay people to do your bidding, you expect something in return and that includes more than docile acceptance of the terms of the deal. The patients or prisoners in the study are now part of the program, not really free to criticize it or influence others about going along, and they are faced with the anxiety that they can be punished for doing so (or kicked out of the program). Those who refuse to join not only give up the cash but have to wonder if they will be recriminated against by their superiors and “outed” by their peers. People in institutions think this way.

And those in the programs find ways to circumvent the rules. I seem to remember that someone proposed to pay patients at the Capital District Psychiatric Center a few years ago to take medicine or give up smoking,one or the other. What happened, I think, is that those who joined in and followed the rules were paid but this backfired. Patients were using the money to buy cigarettes for themselves and their friends.

The moral objections I raise do have to balance out against the simple utilitarian value of carrying out research that matters and finding enough people to volunteer for a project. Hospital patients, prisoners and those in old peoples' homes are among the easiest to find and most vulnerable to exploitation, as history shows us. It seems clear if the studies will do harm in any way, such as using medicines or treatments on the patients without safeguards and full disclosure, or doing interventions that expose the patients' lives to others through publicity or shoddy record keeping, or interventions that lead to these patients being regarded differently by others in the institution, then there is moral liability on the part of the researcher. If not, paying them as an incentive to take part in scrupulous research seems consistent with common convention. For example, in the latest NAMI Promise (Syracuse) newsletter, SUNY Upstate Medical University asks for volunteers for a genetic study of schizophrenia. It says all you do is complete a questionnaire, participate in an interview and have your blood drawn. For that you are paid $50 for your “time and inconvenience.” Sounds proper enough, who can argue?

What about paying people to give up bad habits?

Just to carry this further about the questionableness of paying people to do whatever we want--like throwing off bad habits or conforming their behavior to the rest of us—I have some illustrations how this can go awry. Health and wellness are goods that we all strive for. The state plays a large role in promoting our good health. But should the state be judging cigarette smokers as evil, going to great lengths to penalize smoking? Should it impose harsh jail sentences on those who smoke street drugs, lumping marijuana in with far more potent drugs? We would do well to try to understand why so many people take illegal drugs in a speed-up culture like ours and expand treatment opportunities for them rather than impose jail on them for even minor offenses.

We have this terrible problem of drug taking. Young people in school and college flaunt the rules and defy the police and treatment regimes. Why not pay them to give up a street drug habit or cigarette smoking? It won't work--it takes more than small money to motivate people to get off drugs or smoking and stay off. The habits are too strong. Some will fall victim to their addictions. They can't get off the drugs without long term counseling and supports from those around them, perhaps a radical change in lifestyle and direction. They have to believe in the benefits of abstaining. We have to believe they are worth saving, not try to pay them off to give up such worldly sins.

Why don't we pay others to get rid of unwholesome behaviors? For example: pay prostitutes to use safe sex. It would make the profession quite popular. How about getting overweight people to cut down on food consumption? Wouldn't it benefit them greatly? Yes, but in a free society people can choose to overeat and ignore their health. Why don't we just pay people to be good? It doesn't work. There was a time when parishioners who confessed their sins had to buy indulgences from the church in order to receive penance for their sins. That brought on a revolution in the 1500s. It proved the church couldn't make people good by having them pay their way out of sinning and it left an indelible mark on church history.

The arguments go even farther afield about the folly of paying people to solve a problem. None is more upstart and outlandish than Jonathan Swift's proposal to have the poor Irish in his home country sell their infants to the well to do British to cook them up for a hearty meal or two, so the Irish can escape starvation. In his essay “A Modest Proposal” (1729) he argued that “I have been assured by an American of my acquaintance, that a young healthy child well nursed is at a year old a most delicious, nourishing, and wholesome food, whether stewed, roasted, baked, or boiled; and I make no doubt that it will equally serve in a fricassee or a ragout.”

And politicians who get caught in payoffs cross the line into bribery and corruption, when the public interest is involved. That's a long shot away from the more ordinary practices we've discussed but it shows the desire to pay people for their compliance in any setting often has a tinge of immorality about it. (Roy Neville)

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