Other states have experimented with some forms of limited rationing. Massachusetts, in the 1980s, and Arizona, in 2011, denied funding for certain organ transplants—until high-profile media portrayals of people excluded, such as that of dying infant Jamie Fiske, pressured the states to alter their policies. In Wilbert’s scenario, he may have a compelling case for treatment, but if he is granted an exception to see the birth of his son, other patients will likely step forward with equally compelling cases. Helping these “identified patients” will—in the long run—cost the lives of others, like the Atlanta woman who suffered the devastating brain aneurysm.
In 1984, economist Lester Thurow, writing in the New England Journal of Medicine, explained the fundamental challenge of the US healthcare system in the following way: “As libertarians, Americans are unwilling to deny any particular medication or procedure to wealthy people who can afford to pay for it on their own. Yet as egalitarians, once we allow some patients to obtain a medical intervention, we feel obligated to make that same treatment available to everyone—regardless of cost. The results are rising expenditures and irrational forms of rationing that favor visible patients over invisible victims.” Carving out an exception to Wilbert’s state’s rationing system would produce precisely that unappealing trade-off.
67
Pills for Peak Performance
Dr. Lydgate is a neurologist in private practice. One of her longtime patients, an airplane pilot named Camille, requests that she prescribe her a stimulant, Big A, that is usually given only to patients with rare sleep disorders and narcolepsy. “All of the other pilots take it,” Camille explains. “It helps us concentrate better when we’re in the air.”
Anecdotally, Dr. Lydgate has heard from her colleagues of similar requests, and she knows that stimulants generally can improve short-term focus. Yet the medication has never been approved for this purpose and Camille is not suffering from any known neurological or concentration disorder. In short, she is asking for a medication to enhance her abilities to levels above normal rather than to correct a defect. Dr. Lydgate is confident that Camille’s risk for addiction is very low and that she is telling her the truth about the reason for her request.
Should Dr. Lydgate prescribe Big A to Camille?
Reflection: Cognitive Enhancement
Nootropics are medications that improve cognitive performance in various ways. These might include improvements in memory, arousal, and concentration. Some, including caffeine, are already in widespread use. Others, such as the stimulant Adderall and the wakefulness-promoting agent modafinil, are available only through a prescription or on the extensive black market. For certain individuals, notably patients with attention deficit hyperactivity disorder (ADHD) or narcolepsy, nootropics help treat their illnesses and allow them to function at the level of their peers. For others, these same medications are believed to—and sometimes do—improve performance above the norm. Yet the line between therapy and enhancement is a blurry one.
In many settings, the use of performance-enhancing drugs may be viewed as “cheating.” For instance, much as baseball players are not allowed to inject steroids, some ethicists argue that using amphetamines to study for the SAT gives students an unfair advantage. Critics, of course, note that there are a host of unfair advantages related to SAT preparation that certain students possess and others do not. Wealthy students hire tutors, do not have to work jobs that cut into study time, and can more easily find quiet places to learn without distraction. Why should one prohibit nootropic use but not SAT tutors? Of course, SAT tutors impose very little medical risk. In contrast, amphetamines pose a wide variety of risks and side effects, including addiction potential. These risks might justify banning the use of such drugs for enhancement, but it is a mistake to conflate this argument about danger with concern for unfair advantages.
Probably the most significant threat posed by nootropics is the potential that patients will feel pressured or forced to use them. From Camille’s encounter with Dr. Lydgate, it appears that Big A use is now expected of certain pilots—including those who might not want to assume the long-term medical risks of taking the medication. One woman’s ceiling, as the expression goes, is another woman’s floor. If widespread Big A use raises the performance standards for pilots to a level where nonusers cannot compete, anyone interested in flying commercial jets will be forced, in practice, to opt for cognitive enhancement. Nootropics have the potential to create a “new normal,” against which all participants will be judged. That might prove problematic for a prospective airplane pilot, but it might also be somewhat reassuring to a potential passenger, should it turn out that these agents actually do render air travel safer.
68
“I’d Rather Be Psychotic Than Stupid”
Carolina is a sixty-year-old woman with a history of schizophrenia. She has been admitted to psychiatric hospitals more than thirty times for paranoia, auditory hallucinations, and bizarre behavior. Often, once she is stabilized on medication, her symptoms resolve and she is able to return to the group home where she lives. Yet the medications make Carolina feel “numb” and “stupid,” and she is unwilling to take them voluntarily. “I’d rather be psychotic than stupid,” she tells one of her psychiatrists.
One time immediately after being discharged from the hospital, when she is still on medication and asymptomatic, Carolina finds a lawyer who helps her draft a document called a “psychiatric advance directive.” In the document, she affirms that if she again becomes psychotic, she does not want to receive any medication. She is willing to let the state hospitalize her permanently, if need be, to protect the public and prevent her from self-harm, but she says she does not want to be medicated under any circumstances. She also records a video to go along with the document. “Please don’t believe me if I change my mind,” she says on the video. “When I’m in the hospital, sometimes I’ll say or do anything to get out. But that’s not the real me speaking.” Carolina’s lawyer arranges for two psychiatrists to evaluate her at the time she signs the document. These psychiatric evaluations are preserved on video. Both evaluators agree that she is asymptomatic and thinking rationally.
As soon as the document is signed, Carolina stops taking her medications and becomes psychotic again. She is taken to a psychiatric hospital where the doctors seek a court order to medicate her forcibly. There is no clear legal precedent on the subject in this jurisdiction.
Should the court honor Carolina’s document, or should the doctors be allowed to medicate her?
Reflection: Psychiatric Advance Directives
Advance directives (ADs) for medical decision-making, first proposed by Amnesty International cofounder Luis Kutner in 1969, have become a staple of modern healthcare. California became the first state to authorize such documents in 1976; today, every state has such a statute. In the Patient Self-Determination Act of 1990, Congress required hospitals to educate patients on ADs. These documents, which often take the form of living wills, specify how patients wish their medical care to be handled if they lose the capacity to make their own decisions.
More recently, mental health professionals have grappled with how to translate the principles underlying ADs—patient autonomy and empowerment—into the psychiatric setting. As of 2018, a majority of states have statutes authorizing psychiatric advance directives (PADs) in some form or another. Yet PADs are underutilized. According to psychologist Heather Zelle and her colleagues, “66%−77% of consumers would complete a psychiatric advance directive if given the opportunity and assistance; however, only 4%−13% actually have completed one.” In most jurisdictions, PADs are not binding; unlike medical ADs, they merely guide care and can be overridden by psychiatrists or courts.
The judge in Carolina’s case is being asked to decide whether her PAD should be legally binding. Documents that are binding in the future, even if the person creating the document attempts to change her mind, are often called “Ulysses contracts” after the hero of Homer’s Odyssey. I
n the Greek epic, Odysseus (a.k.a. Ulysses) has himself bound to his ship’s mast, so that he can hear the music of the mythical beauties the Sirens, and commands his crew not to release him—even if he eventually begs them to do so. Similarly, Carolina wishes to be bound by a document she previously executed, even if she later wishes to revoke it.
One US patient has already won a legal battle to have her PAD upheld under these circumstances. Nancy Hargrave, a woman with paranoid schizophrenia hospitalized at the Vermont State Hospital, executed a durable power of attorney stating that she did not want nonemergency psychiatric medication. Her PAD was upheld by the US Second Circuit Court of Appeals in 2003. The state did not appeal further.
Critics of binding PADs often argue that psychiatric patients may not appreciate the full effect of entering into a Ulysses contract and that their wishes may genuinely evolve. Yet Duke University psychiatry professor Jeffrey Swanson and his colleagues noted in 2006 that the rationale for PADs may be stronger than for ADs for general medical patients: “From the perspective of patients with a long history of psychiatric treatment, PADs may actually convey treatment preferences much more accurately than medical advance directives or living wills do, to the extent that such preferences are shaped by previous personal encounters with the health care interventions in question.” At the same time, psychiatric hospitalization is costly. A patient whose PAD rejects medication or electroconvulsive therapy but who cannot survive safely in the community without such treatments, is essentially asking the taxpayers to fund her indefinite confinement. With the mental health system perennially starved for resources, one wonders whether such an extreme effort to uphold patient autonomy—no matter how well intended—is worth the tangible costs.
69
Hazardous Hobbies
The US government is concerned about the healthcare costs of individuals engaged in purely volitional high-risk behaviors such as motorcycle riding, hang gliding, and bungee jumping. While injuries from such activities are not all that common, they often prove very costly. Senator Cheapside has proposed legislation to prevent all government-run insurance programs, including Medicare and Medicaid, from paying for healthcare costs resulting directly from these activities. He has identified ninety-two other activities not to be covered as well—ranging from amateur beekeeping to illegal drag racing. “If you want to be insured for injuries you acquire while engaged in high-risk activities,” he says, “you should purchase private insurance to cover your costs.”
Should Senator Cheapside’s approach to deterring high-risk behaviors be adopted?
Reflection: The Cost of Risk
Life insurers generally charge a premium for high-risk behaviors. According to a 2013 article in U.S. News & World Report, hunters pay an additional $500 annual premium, and rock climbers pay $1,500 extra; scuba diving and skydiving can add $2,500 to one’s rates. Health insurers do not always dig as deeply into the personal behavior of policyholders, but some refuse to cover individuals engaged in dangerous activities. In 2006, one major Illinois corporation reportedly sent letters to its employees informing them that any motorcycle-related injuries would result in immediate termination of their health insurance. In contrast, Medicare and Medicaid usually cover all injuries of their clients, regardless of the origins of those injuries.
The primary reason that public health-insurance entities do not exclude these risk-takers is that health insurance no longer functions as insurance—at least, not in the traditional sense. As political historian Edward N. Beiser observed in the article “The Emperor’s New Scrubs” (1994), “health insurance” is a misnomer. The underlying principle behind traditional insurance is the distribution or “pooling” of risk. Although the odds of my house burning down are quite low, the odds of somebody’s home catching fire are reasonably high, and fire insurance evenly distributes the cost of this burden. Everyone pays in; a few unlucky victims receive compensation. In contrast, the vast majority of Americans will eventually experience injuries or illnesses beyond the age of sixty-five, so nearly all of us will withdraw resources from Medicare. Rather than an insurance program, Medicare is a resource management program, through which, in theory, workers fork over their money to the government, which stores it for them and returns it later to pay for their medical expenses (although the reality is that current payroll taxes pay for today’s elderly, while future workers will supposedly pay for today’s workers to receive coverage).
Since Medicare and Medicaid are default systems for healthcare coverage—filling in for the poor and elderly where private insurance historically did not pay—refusing insurance for high-risk behaviors will leave a pool of injured patients without any way to pay for emergency treatment. As a result of a federal statute, the Emergency Medical Treatment and Labor Act of 1986 (EMTALA), hospitals cannot legally turn such patients away. Moreover, even if hospitals could legally opt out of this care, refusing services in an urgent setting is morally indefensible. So rather than deterring conduct or conserving resources, Senator Cheapside’s approach would likely just shift the price tag for such care to hospitals, which would then pass this cost along to consumers through higher medical bills.
Another possible problem with Senator Cheapside’s proposal is that it may save Medicare and Medicaid less money than he anticipates. Few people who have incomes low enough to qualify to receive Medicaid are likely engaged in beekeeping, bungee jumping, or many of the other expensive activities that concern him. Nor are many elderly Americans, who benefit from Medicare, hang gliding for sport. By far the greatest preventable expenditures for the healthcare system are those related to more mundane risks—namely obesity and cigarette smoking. Arguably, one might deter smoking and excessive eating by refusing to pay for medical conditions resulting from this conduct. Yet that approach would punish overeaters and addicts for health woes that may prove beyond their control and might even sentence them to worsening illness or death.
70
Sex in the Nursing Home
Riley and Norma are two elderly residents of the dementia unit at the Shady Acres Nursing Home. Both suffer from Alzheimer’s disease and are profoundly impaired—generally unable to recognize friends and family or to accomplish more than the most basic tasks. In addition, Norma has numerous outbursts daily, likely tied to anxiety and paranoia. Both of their spouses are deceased; their children live in distant states, check in infrequently, and never visit.
One week, the staff at Shady Acres notices a profound change in Norma. She is calmer and less paranoid. Six days elapse without an outburst. The staff soon discovers a possible cause: Riley has been sneaking into Norma’s room each night after lights-out, and the couple has been engaging in sexual intercourse. It appears Riley has mistaken Norma for his late wife. Although neither Riley nor Norma have the capacity to consent to sex in the way of people without cognitive impairment, they both seem to find the experience soothing and therapeutic.
Assuming there is no risk of spreading disease and only a minimal risk of injury, should the staff allow Riley and Norma to continue their sexual encounters?
Reflection: Dementia and Consent
Sex among the elderly, and particularly among elderly patients suffering from dementia, has long been a taboo subject in the United States. This contrasts with some European nations, such as Denmark, where Copenhagen’s Thorupgaarden nursing home makes pornography and prostitutes available to residents. In US facilities, sexuality is more likely to be met with concern or even derision. This proves especially true with cognitively impaired patients. In 1996, an Ohio court denied a husband overnight nursing home visits with his stroke-afflicted wife for fear that he might seek “sexual intimacy” with her—and that this might lead to litigation for the facility. A seventy-eight-year-old former Iowa state legislator, Henry Rayhons, briefly made national headlines when prosecutors tried him for sexual activity with his elderly wife, who suffered from Alzheimer’s disease. Prosecutors argued that Donna Rayhons lacked the capacity to consent, but th
e jury acquitted her husband of all charges. Only a few US nursing homes, such as the Hebrew Home at Riverdale, have proactive policies legitimizing and governing sex between patients.
One challenge in dementia cases is the issue of consent. Yet consent—with its formal standards—is a problematic concept when speaking of impaired patients. Elderly patients with dementia do not “consent” (in the legal sense) to many things—having their blood pressure checked, showering and changing clothes, eating. Rather, they often “assent” to such activities, either by smiling or expressing enthusiasm or merely offering no resistance, even when they may not fully understand what they are doing or why. Sexual activity is obviously more complicated than merely eating or watching television, and one certainly wants to protect vulnerable patients from truly involuntary sexual activity that amounts to sexual assault. Slate columnist Daniel Engber has raised the possibility of “formal exceptions to the consent rules for spouses or long-term partners.” Rather, one might merely require assent in such cases—evidence that that patient is willing to engage in the behavior and appears to enjoy it.
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