Who Says You're Dead?

by Jacob M. Appel

  Part Five

  Practical Matters

  Medical ethics is often framed as a question of what should be done. In the context of the modern healthcare system, it also reflects an assessment of what can be done. Once governed by informal professional norms, healthcare is now regulated by complex federal and state regulations, including the Health Insurance Portability and Accountability Act (HIPAA) of 1996 and the Affordable Care Act (ACA) of 2010. These rules are frequently in flux; uncertainty remains, for example, whether Congress will repeal portions of the ACA (a.k.a. Obamacare) in the near future.

  Doctors were once answerable primarily to their patients and their colleagues. Now they find themselves navigating tangled webs of agency regulations, hospital bylaws, and insurance bureaucracies. How to serve the interests of their patients, in the context of a system that often renders such service challenging, is one of the significant burdens of contemporary medicine. As medicine becomes more of a business and less of a “learned calling,” many doctors must grapple with issues related to cost containment and resource scarcity. The challenges that arise around the business of medicine have become the bread and butter of many healthcare policy gurus, as well as the bane of many a hospital-based bioethicist.

  54

  Screening Future Employees

  A large-scale study has shown that people who have certain genetic markers on chromosome 15 and also smoke cigarettes are far more likely to develop lung cancer than those who do not carry such markers. This study comes to the attention of Irwin, the owner of the Happy & Healthy Tobacco Company, which manufactures cigarettes. Irwin is concerned that his employees, many of whom smoke tobacco, will develop lung cancer—which would be bad for both his company’s healthcare costs and its public image. He decides to require all future employees to be tested for these genetic markers, and plans to hire only those who test negative.

  Should our society permit him to require this sort of genetic testing of prospective employees?

  Reflection: Genetic Discrimination

  Congress passed the Genetic Information Nondiscrimination Act of 2008 (GINA) with bipartisan backing. Both President Bill Clinton and President George W. Bush had advocated for the bill; it passed the Senate 95–0 and the House of Representatives 414–1, with only Libertarian congressman Ron Paul dissenting. The legislation bans discrimination in employment and health insurance on the basis of one’s genetics. (Notably, however, life insurance and disability insurance are not covered, leaving an ongoing deterrent to genetic testing.) The purpose of the law was to combat “genoism,” a term coined by Gattaca film director Andrew Niccol to describe discrimination against a person based on his genetic résumé. While employers can test for a condition likely to cause current harm, they cannot test for future risks. So a bus company would be allowed to test drivers for a gene mutation likely to cause sudden heart attacks or seizures on the job at present, but not a mutation expected to cause blindness down the road.

  Advocates of the law compare genetic discrimination to racial prejudice. Critics are quick to slam this analogy. Columnist Andrew Sullivan wrote in the New York Times: “The point of laws against racial bias is to outlaw irrational discrimination based on irrelevant characteristics. The point of laws against genetic discrimination is to outlaw rational bias based on relevant information.” [Italics added.] While Sullivan conceded that such genetic data is “speculative,” he argued that it was speculative in the same way that SAT scores are speculative: some low performers may succeed in college, but that does not mean the tests do not have some predictive value. Similarly, then, Irwin’s plan to hire only employees who test negative for lung cancer markers on chromosome 15 could be considered perfectly rational, whether or not it is just.

  Allowing discrimination based upon genetic risks that may display themselves in the future strikes many people as unfair, but is it really so much more unfair than discriminating against traits that already display themselves? Nobody would expect Greyhound to hire a blind bus driver. So why expect it to hire a bus driver who has a genetic condition that makes her 99 percent likely to go blind within five years? The company would squander resources training an employee who would not able to work in the near future, while that employee would lose an opportunity to learn a trade she could continue to perform after her blindness sets in.

  More concern exists, however, for prospective employees who have conditions likely to prevent employment anywhere. One can easily imagine a situation where companies outside the tobacco industry also refuse to hire workers positive for the lung cancer markers on chromosome 15. The law offers blanket protections against employment discrimination for such genetically unlucky individuals. How to permit rational genetic discrimination without closing off meaningful opportunities for those who have lost the so-called genetic lottery remains an unresolved ethical dilemma.

  55

  “I Want a White Surgeon”

  A patient, Hector, is admitted to the hospital for an emergency appendectomy. Without surgery, he runs a high risk of a burst appendix and death. The patient, who is a well-known activist in the white supremacy movement, will agree to the surgery on the condition that only Caucasian surgeons operate on him. Hector says that nonwhite hospital staff, such as nursing assistants, may be present in the room, but they may not touch his body. If the hospital cannot accommodate his request, he states that he would rather die than violate his convictions.

  Should the hospital provide him with an all-white surgical team, and if not, should they operate against his wishes or allow him to die?

  Reflection: Patient Prejudice

  Requests related to the identity of the caregiver generally occur along a continuum. Some requests, like those of a Ku Klux Klan member demanding a white doctor, strike much of society as disturbing, if not repugnant. Others, such as a pregnant teenage girl requesting a female gynecologist for her first obstetric exam, appear much more reasonable to many people. Numerous cases stand in a gray area between these extremes—for example, the African American psychiatric patient who requests that an African American psychiatrist evaluate him, because he fears that a white doctor can’t understand what he has experienced. Practical exigencies and consequences may also come into play: a patient whose request for a home health aide of a specific ethnicity or gender is rejected may find pretexts for firing aides who do not meet her requirements until her specifications are met.

  While data regarding racial attitudes of patients is not available, research shows that a sizable number of patients have personal preferences for the gender of their physicians. For instance, one 2005 study showed that pediatric patients preferred female providers while their parents preferred male providers. By contrast, a 2016 investigation found that only 1 in 10 adults cared about the gender of their doctor—although that percentage, at the population level, is still a large absolute number of patients. (Complicating the subject even further, a study published in JAMA Internal Medicine in 2017 found that certain elderly patients actually achieve better outcomes when treated by female providers.) Religious beliefs further complicate matters. Reasonable people might sympathize with the request of an Orthodox rabbi who asks for a male urologist for his prostatectomy because his religion objects to an unrelated woman touching him, if such contact can be avoided. Far fewer people sympathize with a male patient who demands a male urologist under the mistaken belief that “women are too emotional to cut straight.”

  Hospitals and courts would prefer to avoid the time and energy involved in investigating the motivations of those who make such race- and gender-specific requests, but in the case of Hector, the hospital has three distinct options. It can honor Hector’s request regarding his care providers’ race and arrange for an all-white surgical team. It can defy Hector’s request and, declaring this a medical emergency, forcibly treat him with a multiracial surgical team. Or it can refuse to honor Hector’s request for a white surgical team but honor his related request regarding his right to die if the only
other option is a nonwhite surgeon. Few patients are likely to hold beliefs as strong as Hector’s on race, so accommodating such rare requests is unlikely to cause significant disruptions in the overall delivery of healthcare. Letting Hector die because he holds views that many find objectionable might strike many physicians as out of keeping with the nobler traditions of medicine. At the same time, honoring such requests runs the risk of stamping members of certain ethnic, racial, or gender groups with a “badge of inferiority,” leading to demoralization. This effect might be particularly concerning if the same groups of providers were consistently excluded, resulting in increased social acceptance of such prejudices.

  56

  “We Don’t Tell Our Elders They Have Cancer”

  Agatha is a ninety-year-old woman who arrives at the hospital coughing up blood and is rapidly diagnosed with a terminal lung tumor. Before the physician on duty, Dr. Zhivago, can inform Agatha of her diagnosis, her daughter, Delia, arrives at the hospital and requests to speak with Zhivago. She tells him that her mother grew up in a small isolated nation in the Caucasus and immigrated to the United States only in her seventies, following the collapse of the Soviet Union. “In our culture,” explains Delia, “we don’t tell our elders they have cancer. We certainly don’t tell them that they are going to die. Please tell her she has an infection, but that it is nothing to worry about. Trust me, she would not want to know the truth.”

  Delia’s brother, Victor, arrives several minutes later and also urges Dr. Zhivago not to inform his mother of her terminal cancer diagnosis. He says: “Mama thinks like the people she grew up around, not like an American. No doctor in her homeland would ever dream of telling a patient she is going to die. What right do you have to take away our mother’s hope? Besides, what’s the point of upsetting her when there is nothing to be done?”

  Should Dr. Zhivago withhold the diagnosis and prognosis from this elderly patient?

  Reflection: Autonomy and Culture

  One of the fundamental principles of modern medicine in the US is that patients should have the autonomy to make their own healthcare decisions. One might think of this as the Frank Sinatra rule: “I’ll do it my way.” For patients to make informed decisions, physicians need to apprise them of their diagnoses and treatment options. It is worth noting that this has not always been the case: in 1961, a well-known survey conducted by physician Donald Oken revealed that 90 percent of doctors would not reveal a terminal cancer diagnosis to a patient. Withholding such information remains standard practice in some non-Western nations. The question arises whether Agatha should be treated as other American patients, or in line with the cultural norms of her birthplace. Doctors will want to conform to her wishes, of course, but it may prove difficult to discern what her wishes would be without compromising them. Dr. Zhivago could ask: “Would you want me to tell you if you were dying of cancer?” Unfortunately, that is not far removed from asking one’s spouse, “Would you want me to inform you that I’m cheating on you?” Sharing the question would also reveal the probable answer.

  What one might do in Agatha’s case is inquire, as part of a series of general questions about medicine and familial health, “Has anybody in your family ever died of cancer?” Most patients, based on statistical averages, will say yes. The physician might then ask, “How did you or your family handle the situation? Did you tell him?” If the patient were to respond, “Of course not. Are you crazy, doctor? Why would we do something like that?” then one has a strong indication of how the patient would wish her own case to be handled. Similarly, if the patient were to say, “Of course we did,” that would also help guide care. However, these techniques will not establish clarity in all circumstances.

  One approach to these cases suggests weight should be placed on whether treatment decisions must yet be made. If there is truly nothing to be done, then a stronger argument exists for erring on the side of withholding information. However, if decisions still need to be rendered—about palliative radiation, for instance—then one might lean toward revealing the diagnosis in situations in which the patient’s preferences about knowing her diagnosis prove truly impossible to ascertain. The flaw in this approach is that all patients have end-of-life decisions to be made, although some choices do not relate to medical care. If Agatha were to find out that she is dying, she might wish to rewrite her will, or to return to her homeland for a final time, or take a luxury cruise. Denying medical autonomy can often result in denying nonmedical autonomy as well.

  57

  “The Best Treatment Is Prayer”

  Mina, a sixty-five-year-old widow, falls on the sidewalk, is brought to the emergency room at a community hospital with a broken femur, and has her leg surgically repaired. On day three of her hospitalization, she develops bacterial pneumonia—which can usually be treated with antibiotics. Without treatment, many patients die. Mina refuses antibiotics. She says that she is a Christian Scientist and that the best treatment for her pneumonia is prayer. “Antibiotics won’t work,” she says. “In fact, using antibiotics will show God that I don’t have absolute faith and will interfere with the efficacy of my prayers.”

  While the doctors are deciding how to handle this situation, Mina’s daughter, Fiona, arrives at the hospital. She has traveled from out of state, coming as soon as she learned that her mother was ill. Fiona demands that the doctors treat her mother with antibiotics. “She only became a Christian Scientist last month when she started dating a new boyfriend,” says Fiona. “For sixty-four years, she was a run-of-the-mill Methodist like the rest of our family.” Mina confirms this story but insists she can convert to any religion she wants at any time for any reason.

  Should the doctors try to get a court order to treat Mina over her vocal objections?

  Reflection: Cognitive Capacity

  Before patients are granted the autonomy to make their own medical decisions, they must meet certain basic cognitive standards, which are referred to as “having capacity.” Multiple tests for capacity exist, but the best-known is one described by psychiatric ethicist Paul Appelbaum and psychologist Thomas Grisso in 1988 in a seminal article in the New England Journal of Medicine. Appelbaum and Grisso asked that patients communicate a consistent choice, understand information relevant to their medical condition, appreciate the consequences of various proposed interventions, and be able to manipulate information rationally.

  Christian Scientists generally do not meet these standards. While they accept treatment for injury, they usually reject medication for illness because they believe that prayer may cure illness and modern pharmaceuticals will not. In short, they doubt the efficacy of medicine. (This contrasts with Jehovah’s Witnesses, for example, who reject blood transfusions; Jehovah’s Witnesses acknowledge the efficacy of such transfusions—i.e., “they work”—but view them as banned by the Bible.) While prayer may or may not help patients in distress, a question about which there is considerable disagreement, antibiotics do cure bacterial pneumonia. Although Christian Scientists refuse to accept these medical “truths,” they are permitted to make their own medical decisions—an exception to Appelbaum and Grisso’s principles. However, they may not make similar decisions for their children.

  If Mina had been a Christian Scientist her entire life, the consensus among medical ethicists would be to allow her to refuse care under these circumstances. Complicating the situation is her recent conversion. Professor Edward N. Beiser of Brown University often described the challenge in such cases as “the Jell-O test.” Almost all of us, as children, have watched our parents or grandparents make Jell-O: first, pouring colored powder into a pan of boiling water and then refrigerating it until it cools into Jell-O about an hour later. The more impatient among us likely opened the refrigerator halfway through the process, probably several times—trying to determine at which precise moment the colored water gelled into Jell-O. Similarly, bioethicists must ask how long, loud, and consistent a patient’s change of heart must be before her new beliefs can gov
ern her medical decisions. Is one month as a Christian Scientist long enough? Three days? Half an hour? As the stakes rise—and especially in matters of life and death—hospitals and physicians often ask for longer, stronger periods of consistency.

  58

  Well-Intentioned Fraud

  A middle-aged woman, Vivien, appears for her first appointment with an oncologist, Dr. Bock, to begin treatment for a rare form of cancer. She is accompanied by her sister, Jeanne, to whom she bears a striking resemblance. On evaluation, the physician notes several major inconsistencies between the patient’s medical records and the findings from her physical exam. Most notably, previous doctors have documented that the patient lost her left index finger in an automobile accident, but Vivien appears to have all ten of her digits intact.