Advocates for the legitimacy of force-feeding make two distinct sets of claims: First, they advance the welfare of the individual inmate. Society, they argue, has a right to prevent suicide—and inmates who refuse food are merely engaged in prolonged attention-seeking suicide attempts. Even if self-starvation were permitted outside of prisons, inmates are an inherently vulnerable population whose very capacity to make their own decisions about such high-stakes matters as suicide are necessarily diminished. In the interest of the inmates themselves, doctors have a moral obligation to preserve their lives. Second, force-feeding advocates claim that preventing such hunger strikes is essential for maintaining order in a complex and often dangerous penal system. Allowing inmates to starve themselves undermines the authority of corrections officials and places both prisoners and staff in danger.
Yet force-feeding, especially when the patient resists, is not a benign procedure. Both the American Medical Association and the World Medical Association have condemned the practice, which many human rights advocates regard to be a form of torture. Most medical professional organizations prohibit their members from participating.
Analogies are often drawn to the role of physicians in capital punishment. While doctors have dual loyalties, serving both patients and society, any significant entanglement of healthcare providers with law enforcement should require compelling justification. Even if one believes that force-feeding or the death penalty is itself ethical, it does not necessarily follow that physicians should have a role.
46
Nonvaccinators in the Waiting Room
Dr. Liz Wilson is a pediatrician in private practice. Among her patients is Ricky, the one-year-old son of Adeline and Roger. Up to the age of twelve months, Ricky has received all of his scheduled vaccinations. Yet when he arrives for his one-year well-child visit, Adeline informs Dr. Wilson that she does not want Ricky vaccinated for measles. “I’ve read online that the vaccine can cause autism,” she says. “And anyway, the risk is so low. Why put all of those toxins in his tiny body for nothing?” Neither Adeline nor Roger can be persuaded to change their minds.
Dr. Wilson has learned that several measles cases have been recorded in her city that summer and at least one patient died. She is concerned that Ricky may become infected and then will expose her other patients—including those too young or too sick to be vaccinated—to measles.
Would it be ethical for her to tell Roger and Adeline that she can no longer treat their son?
Reflection: Parental Dissent
While some decisions by parents are so unreasonable that the law lets courts intervene, all states recognize at least a limited right of parents to opt out of vaccinating their children for medical reasons. Many also permit religious or philosophical exemptions. However, just because parents have a right to opt out, that does not necessarily mean that pediatricians have a legal or ethical obligation to continue to offer services to their children.
The case of Ricky is different from many other conflicts in pediatrics, because Dr. Wilson’s concern is not only for Ricky’s welfare, but also for that of her other patients. As noted in the scenario, many of these patients may not yet be candidates for vaccination as a consequence of immature age or medical factors. In addition, some vaccines are simply not effective in some patients, so the only true protection is to keep these patients away from others who are at risk. If enough people are vaccinated, even those in whom the vaccine does not work will be protected, because the likelihood of them coming into contact with someone else who is either not vaccinated or in whom the vaccine did not “take” is extremely low. This epidemiological principle is known as “herd immunity.”
While the threat of autism from the measles vaccine has been widely rejected by the scientific community, and is based upon a fraudulent study conducted by former physician Andrew Wakefield, no vaccine is without some minimal risks. However, the collective benefits of every child being vaccinated—namely, the eradication of measles cases—vastly outweighs those risks. Roger and Adeline are correct to state the odds of contracting measles are generally low; however, they are low because most children have been vaccinated. If more families opted out, the risk would rise. This is a “collective action problem,” sometimes called the “dilemma of the commons.” One might say that, by taking advantage of the low risk resulting from the widespread vaccination of others, Adeline and Roger are freeloading.
Physicians outside the hospital and emergency setting can generally choose their patients with very few restrictions. As long as Dr. Wilson gives Adeline and Roger a reasonable amount of time to find another provider for Ricky, she is well within her legal rights to turn them away. Whether it is ethical for her to disrupt their therapeutic relationship in this coercive manner is a far more challenging question.
47
The Evidence Is in His Leg
During a robbery, a shopkeeper, Silas, is shot by an armed assailant. After he is wounded, Silas returns fire and hits the attacker in the thigh. The shopkeeper dies before he can describe the perpetrator to the police, mumbling only, “I shot him in the leg. I shot him in the leg.”
The police suspect a known criminal named Wesley, who showed up in the emergency room of a city hospital two hours after the robbery with a bullet wound in his leg. The police would like to compare that bullet to the rounds remaining in Silas’s handgun. However, when Wesley realizes that the bullet may be used as evidence against him, he refuses to consent to surgery to remove it. The doctors believe that without the bullet removed, Wesley may suffer from some chronic pain and possibly a limp, but with proper wound care, he is unlikely to die or experience other long-term consequences. No other direct evidence ties Wesley to the crime other than the bullet wound.
Should police be able to have doctors remove the bullet from his leg—a relatively safe operation that can be conducted under local anesthesia—in order to present it as evidence at his trial?
Reflection: Searches and Seizures
The issue of the surgical removal of potential evidence arises infrequently but has been the subject of a surprising amount of legal and ethical scholarship. The Fourth Amendment to the US Constitution forbids unreasonable searches and seizures, while the canons of medical ethics generally prohibit involuntary infringements of bodily integrity, at least when performed upon competent patients. Yet the prosecution of alleged criminals is a vital state interest that protects the public, so both physicians and judges have struggled to find the right balance.
In the 1970s, attorney John Cain advanced an argument for distinguishing between major and minor surgeries; under Cain’s criteria, major surgery to retrieve evidence was never to be permitted, but minor surgery might be permitted under compelling circumstances. In the Supreme Court case of Winston v. Lee (1985), Justice William Brennan adopted a “reasonableness” standard that incorporated both the seriousness of the operation and the importance of the evidence. Rather than a blanket rule, Brennan believed these matters ought to be decided on a case-by-case basis. In the particular case of Rudolph Lee Jr., an alleged robber who refused to have a bullet extracted from beneath his collarbone, Brennan noted that the state had “substantial additional evidence” available that made the argument for forced surgery unconvincing.
A factor complicating the involuntary extraction of evidence is the role of physicians. It is one matter for the state to assert a right to retrieve evidence surgically but quite another for them to commandeer doctors into the process of retrieving it—especially if those physicians are unwilling. This issue has arisen most frequently with regard to the forcible drawing of blood during traffic stops. Two states, Hawaii and Idaho, now require medical personnel to engage in phlebotomy, even over a patient’s objections, when instructed to do so by law enforcement. Only South Dakota law overtly shields physicians who refuse. With surgical procedures, prosecutors largely rely on the willingness of surgeons to perform involuntary evidence extractions. If no surgeons were willing to engage in such pro
cedures, courts would likely prove reluctant to order them to do so.
Some ethicists maintain that any surgical intervention to retrieve evidence, conducted against a patient’s will, is always unethical. For them, removing the bullet from Wesley’s leg is inherently unacceptable. In contrast, for ethicists who accept Justice Brennan’s balancing approach, the case for performing forced surgery upon Wesley appears reasonably strong: the surgery is minor and the alleged crime serious, while the bullet appears to be the decisive piece of evidence.
48
Echoes of Tuskegee
Treatment for a bone infection, or osteomyelitis, usually requires four to six weeks of intravenous antibiotics. Researchers at a university in the United States would like to test whether a shorter course of antibiotics, lasting only two weeks, can prove effective in most cases. However, setting up a study that compares patients receiving two weeks and those receiving four weeks of antibiotics would never be approved in the US, because the four- to six-week treatment regimen is known to be highly effective.
Instead, the researchers want to conduct their study in a developing nation in sub-Saharan Africa, where they have a positive relationship with public health authorities. In that nation, most patients who contract osteomyelitis go untreated, and many die. The researchers plan to offer a group of such patients, who would otherwise receive no treatment, a two-week course of antibiotics to see if it is effective. They will provide other basic medical care as well, but will not offer anyone the longer course of antibiotics that is already known to work.
Is this research ethical in the African nation even though it would not be permitted in the United States?
Reflection: Research Standards
Medical research in the US has a checkered record of experimenting on vulnerable populations. Much of the lay public now knows of the Tuskegee syphilis experiment (1932–1972), during which government researchers observed the natural course of syphilis in a cohort of impoverished African American men while denying treatment to them. Other well-known troubling studies have also been conducted in the US—on developmentally impaired children at the Willowbrook State School in New York, to investigate hepatitis, and on prisoners at Stateville Penitentiary in Illinois, to learn more about malaria. Historian Harriet Washington reviews much of the chilling history of research on African Americans in the book Medical Apartheid (2007). Such experiments led to a public outcry and eventually to passage of the National Research Act (1974) and the creation of the National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research. The Belmont Report of 1979 and the US Department of Health and Human Services’ Common Rule of 1981 resulted in the establishment of institutional review boards (IRBs) designed to prevent such abuses in the future.
During the HIV/AIDS epidemic of the 1980s and 1990s, researchers found their sincere efforts to create cheaper and more effective drugs were hampered by IRB rules. Some turned abroad, to nations like Uganda and Thailand, to conduct studies that could not have been conducted in the United States. Many of these protocols were designed to expand knowledge of existing interventions and lacked what is known as “clinical equipoise,” a genuine uncertainty as to whether one treatment is better than another. Others tested a novel treatment while withholding an existing treatment known to be effective.
The proposed osteomyelitis study, for instance, does the latter. Advocates for this kind of research argue that the subjects, while not receiving treatment that meets the standard of care in developed nations, nonetheless end up no worse off—and usually better off—than they would be without participating. Some subjects do receive a treatment that may work. All receive general medical care. Without the experiment, none of the subjects would likely receive either of these benefits. Of course, one might logically conduct the experiments in impoverished or isolated communities within the United States on the same grounds—except that no IRB would ever approve such an arrangement.
Health ministers in several nations have welcomed Western scientists to set up such studies, hoping the results would improve healthcare access. In contrast, Marcia Angell, the former editor of the New England Journal of Medicine, has proved among the fiercest critics of such a two-tiered system of research norms. To Angell, Western doctors are ethically obligated to uphold the same standards elsewhere in the world as they do in the United States.
A closely related challenge is what is to be done with data that science later concludes was obtained through unethical experimentation. At the extreme are the results of medical experiments conducted at Nazi concentration camps. Harvard surgeon Robert Berger identified thirty such projects, the best-known of which were the immersion-hypothermia experiments conducted under Nazi doctor Sigmund Rascher at Dachau. An increasing consensus exists that the data from these experiments is not of scientific value, a position advanced by Berger and Arnold Relman, another former editor in chief of the New England Journal of Medicine, but the studies have nonetheless been cited in several dozen journal articles. As late as the 1980s, hypothermia expert Robert Pozos offered a spirited defense of their potential value. Whatever the particular worth of Nazi data, one might ask who “owns” the legacy of this research: Should the few individual survivors of these ghastly experiments or those groups who speak for victims of the Holocaust more generally have any say in determining the use of the data?
In a New England Journal commentary in 1990, Angell staked out an absolutist position against using data from experiments in the developing world that could not be conducted ethically in the United States. Angell observed that opponents of the “use of such data believe that it would tend to blunt the horror of what happened and thus in a sense dishonor those who died and offend the sensibilities of those who survived.” Yet her primary objections were more forward-looking: namely, that publishing unethical data of any sort would encourage other scientists to continue to act unethically. Since publication is the currency of academic science, the hope was that removing the principal incentive for misconduct might reduce such malfeasance. Angell’s opinion proved highly influential; many other editors have followed her lead. Whether ethical or not, the researchers in the osteomyelitis scenario might have trouble finding a major journal willing to accept their resulting article for publication.
49
“It Will Help Others, Not You”
Dr. Crusher, a pediatric oncologist, believes that a specific form of pediatric brain tumor is closely associated with early childhood exposure to certain chemicals. To test her theory, she wants to conduct a study that will take biopsies of these always-fatal tumors from afflicted children and compare them with the chemical-exposure histories reported by the children’s parents. She hopes that the biopsy samples of those children exposed to the chemicals will display distinctive neurochemical markers, while those children who also have tumors but whose parents report no chemical exposure will not have these markers. In the long run, her goal is to demonstrate a chemical exposure–brain tumor connection that will lead to restrictions on these chemicals, ultimately saving children’s lives.
The catch to this study is that the children involved will not benefit directly in any way. In fact, they will have to undergo a brain biopsy, which comes with risks: infection, bleeding, pain at the extraction site. Since these children are too young to consent on their own—most are between three and five years old—Dr. Crusher plans to seek permission from their parents. She intends to persuade them to participate by saying, in part, “Think of all the other parents and children you’ll be helping.”
Should this study be permitted?
Reflection: Research or Treatment?
One of the fundamental differences between research studies and clinical medicine is that investigative subjects should not expect to benefit from their participation in studies. In fact, subjects in scientific research, such as pharmaceutical trials, may actually be harmed. For instance, drugmaker Eli Lilly halted late-stage trials of its promising Alzheimer’s disease tre
atment, semagacestat, in 2010, after participants showed increased cognitive decline and higher rates of skin cancer. All six participants in a 2006 trial of the synthetic antibody TGN1412 became critically ill. Yet despite highly publicized negative outcomes, such as the death of eighteen-year-old Jesse Gelsinger in a University of Pennsylvania gene therapy study in 1999, many participants mistakenly believe they will benefit from participating in research. The mistaken belief, first described by psychiatric ethicist Paul Appelbaum, is called the “therapeutic misconception.”
Medical sociologist Gail Henderson and her colleagues have defined the therapeutic misconception as occurring when “individuals do not understand that the defining purpose of clinical research is to produce generalizable knowledge, regardless of whether the subjects enrolled in the trial may potentially benefit from the intervention under study or from other aspects of the clinical trial.” Patients in research studies—for one of many reasons—lose sight of the fact that they might not benefit. To many laypeople, research and healthcare appear very similar—both involve medical professionals, frequently dressed in white lab coats, providing interventions such as pharmaceuticals. Often these participants are desperate for help, having exhausted all known remedies.
Power imbalances between scientific experts, who are usually physicians, and patients, further complicate matters. Many research subjects, receiving experimental pills from doctors, simply trust these doctors (mistakenly) not to expose them to risk. In the pediatric setting, parents of subjects are vulnerable to the same misunderstandings and false optimism. One must ask to what degree the parents of potential participants in Dr. Crusher’s proposed study truly understand that their own children will not benefit.
Who Says You're Dead? Page 13