Many Americans will face some form of significant medical decision-making during their lifetimes, either for themselves or for their loved ones. Often, the choices they confront will raise challenging ethical questions: when to remove a relative from life support, whether to donate an organ to a family member, how to approach screening of an expected child in utero.
Unfortunately, most of us give little thought to these issues until they actually arise, and then we find ourselves woefully underprepared for the complex dilemmas we face. This need not be the case. However, change will only occur when bioethics is broadly incorporated into school curricula and when our nation’s thought leaders begin to place emphasis on the importance of reflecting meaningfully in advance upon these issues.
Reasons for bioethics illiteracy are as numerous as the issues patients and family members are likely to confront. The steep decline of religious engagement and social capital starting in the 1960s has occurred simultaneously with rapid and transformative advances in medical technology, creating a vacuum in which Americans confront increasingly more difficult choices without the ability to rely upon traditional moral and communal guideposts.
More recently, the deep polarization of the political process has spilled over into the bioethics arena—first with abortion in the 1970s, and later into areas such as aid in dying, stem cell research and the allocation of health care resources. The consequences of this polarity were seen most notably in claims that Section 1233 of the Affordable Health Choices Act of 2009, which would have reimbursed physicians for advance directive counseling through Medicare, would lead to so-called “death panels,” and in the media circus surrounding the case of Terri Schiavo.
School boards may fear that ideologues of various persuasions will respond negatively to bioethics education and so eschew taking the risk of teaching the subject. Yet the barriers to bioethics literacy may be even more fundamental: an aversion to addressing matters perceived to be painful or difficult or a fear of drowning in a sea of complex, technical information.
End-of-life decision-making offers one challenge that many Americans are likely to encounter and for which few adequately prepare. As of 2017, only 36.7 percent of Americans had completed any form of advance directive either indicating their medical wishes or appointing a health care decision-maker in the case that they were to become incapacitated. Far fewer, in my experience, have done so in a productive way: discussing their preferences with their proxy or relatives, documenting their directive in a manner that is accessible, etc.
On numerous occasions as a physician, I have called a patient’s appointed health care decision maker and discovered that the patient had never informed the proxy of her role, let alone discussed his wishes. Studies have shown that a significant plurality of proxies do not know patients’ preferences on such matters as basic as code status, and the number is likely lower for decision-makers who are not formal proxies, but merely family members called upon for guidance. When I survey audiences, one of the leading places people store their advance directive forms is in their safe deposit boxes, to which they may not have access during a severe illness. Even a close colleague who taught bioethics with me at a major university refused to discuss or document his medical wishes in advance, dismissing my urging as “inviting bad news.”
The consequences cannot be overstated. For society, the costs are often economic: millions expended on “heroic” measures that patients never desired. For physicians, the emotional burden of providing futile or excessive care can be severe. And for relatives, already overwhelmed by the grave suffering of a loved one, rendering decisions in the ether of darkness can prove a genuine torment—sometimes even tearing families apart. Two sisters may disagree, for instance, on whether a patient would want artificial nutrition, leading to conflict that might have been prevented with an earlier discussion with their brother.
The tools to incorporate such issues into our education agenda are readily available. I designed a two-part secondary school bioethics curriculum for the New York Times’ Learning Network last year. An even more extensive curriculum for teens is available from New York University’s School of Medicine. Needless to say, such curricula cannot address all of the theoretical issues that might arise over a lifetime. Rather, they can provide flexible tools for recognizing and grappling with a wide range of potential scenarios.
Often merely recognizing such issues in advance is winning the greater part of the battle. Just as we teach calculus and poetry while recognizing that most students are unlikely to become mathematicians or bards, bioethics education offers a versatile skill set that can be applied to issues well outside the scientific arena. At present, bioethics is taught sporadically at various levels, but not with frequency, and even obtaining comprehensive data on its prevalence is daunting.
In addition, incorporating bioethics into school curricula at an early age can only improve our public discourse. Far too many of us see moral choices in black and white and believe that those who disagree with us on hot button topics in bioethics are genuinely evil. Without advancing particular causes or views, we can teach children the complexities and nuances of these issues—as well as an appreciation for the opinions of those with whom we disagree. Recognizing that our opponents are not our enemies, but rather well-intentioned people acting in good faith who start with different premises and thus arrive at different conclusions, is a necessary prerequisite for meaningful persuasion.
Our leaders might also emphasize the importance of bioethics literary. Regrettably, at present, our political and cultural icons rarely encourage such discourse. As of now, President Trump has gone over 1,000 days without appointing a bioethics commission, the longest delay in a generation. None of the other presidential candidates address the importance of these issues on a regular basis despite opportunities—including several with high profile healthcare scares—to do so. Yet a heart attack on the campaign trail or a controversy over genetic ancestry is precisely the moment to engage ordinary Americans in such discussions.
Significant strides have been made in the past generation in educating physicians and other health care professionals in ethics, although there is obviously still a long way to go. In contrast, almost no progress has been made in educating the general public. Yet as I often tell lay audiences, bioethicists are fun people to know: always armed with a salient anecdote or hypothetical to liven up a cocktail party or wedding.
The only place you do not want to meet us is in the hospital—and the soundest way to prevent that is to educate yourself on these subjects while you are healthy and to explore your values and goals with your loved ones. Widespread education on these issues, starting on the secondary school level, is the best way to ensure that this occurs.