Capacity for Preferences and Pediatric Assent: Implications for Pediatric Practice

In the past thirty to forty years, clinicians and bioethicists have expanded the scope for children’s participation in decision‐making about their medical care, often under the banner of “pediatric assent.” The success of this movement was signaled perhaps most strongly by the creation of American Academy of Pediatrics guidance on pediatric assent in 1995. We agree with the AAP that both the best interests of the child patient and the need to respect the child patient are reasons to take seriously children’s treatment preferences. However, we argue that the AAP could provide a stronger and more stable ethical foundation for pediatric assent. Current policy documents invoke a conception of respect that is grounded in autonomy and cannot apply in most cases of pediatric assent. We argue that the mere fact that children have treatment preferences is a reason to support pediatric assent. We defend this claim by focusing on the importance of what we have called “capacity for preferences.” The notion of capacity for preferences underscores that the moral value of a patient’s preferences is not reducible to considerations of either autonomy or best interests.     

Capacity for Preferences: Respecting Patients with Compromised Decision‐Making

When a patient lacks decision‐making capacity, then according to standard clinical ethics practice in the United States, the health care team should seek guidance from a surrogate decision‐maker, either previously selected by the patient or appointed by the courts. If there are no surrogates willing or able to exercise substituted judgment, then the team is to choose interventions that promote a patient's best interests. We argue that, even when there is input from a surrogate, patient preferences should be an additional source of guidance for decisions about patients who lack decision‐making capacity. Our proposal builds on other efforts to help patients who lack decision‐making capacity provide input into decisions about their care. For example, “supported,” “assisted,” or “guided” decision‐making models reflect a commitment to humanistic patient engagement and create a more supportive process for patients, families, and health care teams. But often, they are supportive processes for guiding a patient toward a decision that the surrogate or team believes to be in the patient's medical best interests. Another approach holds that taking seriously the preferences of such a patient can help surrogates develop a better account of what the patient's treatment choices would have been if the patient had retained decision‐making capacity; the surrogate then must try to integrate features of the patient's formerly rational self with the preferences of the patient's currently compromised self. Patients who lack decision‐making capacity are well served by these efforts to solicit and use their preferences to promote best interests or to craft would‐be autonomous patient images for use by surrogates. However, we go further: the moral reasons for valuing the preferences of patients without decision‐making capacity are not reducible to either best‐interests or (surrogate) autonomy considerations but can be grounded in the values of liberty and respect for persons. This has important consequences for treatment decisions involving these vulnerable patients.     

Relational Potential versus the Parent‐Child Relationship

In an article in this issue of the Hastings Center Report, Aaron Wightman and his coauthors attempt to address health care providers’ moral distress about acceding to parents’ requests to provide life‐sustaining medical treatment to children who have profound cognitive disabilities. They propose combining John Arras's relational potential standard and care ethics, and they argue that the capacity for caring relationships can provide an independent moral justification for honoring such requests. This combination is, however, unstable. Wightman et al.'s language of potential and capacity opens the possibility of substantial misinterpretation. They rely on epistemological and prognostic uncertainty to argue that reciprocity and participation may be present in the parent‐child relationship even when the child's engagement cannot be observed. The terminology suggests that these are characteristics that can be gained or lost rather than characteristics of being born within certain social practices. In contrast, Eva Feder Kittay illuminates family membership as an important social relation. Her articulation of the independent moral value of parenting stands on its own without being conjoined to Arras's position.     

Of Balloons and Bicycles—or—The Relationship between Ethical Theory and Practical Judgment

What has moral theory to do with practical judgment? The practical ethicist can move by analogy from case to case, saying of most new cases, “Oh, I think I've been here before.” Theory, ascending to a broader view, can provide directions when the ethicist finds herself in unfamiliar territory.     

Conflating Capacity & Authority: Why We're Asking the Wrong Question in the Adolescent Decision‐Making Debate

Whether adolescents should be allowed to make their own medical decisions has been a topic of discussion in bioethics for at least two decades now. Are adolescents sufficiently capacitated to make their own medical decisions? Is the mature‐minor doctrine, an uncommon legal exception to the rule of parental decision‐making authority, something we should expand or eliminate? Bioethicists have dealt with the curious liminality of adolescents—their being neither children nor adults—in a variety of ways. However, recently there has been a trend to rely heavily, and often exclusively, on emerging neuroscientific and psychological data to answer these questions. Using data from magnetic resonance imaging and functional MRI studies on the adolescent brain, authors have argued both that the adolescent brain isn't sufficiently mature to broadly confer capacity on this population and that the adolescent brain is sufficiently mature to assume adolescent capacity. Scholars then accept these data as sufficient for concluding that adolescents should or should not have decision‐making authority. Two critical mistakes are being made here. The first is the expectation that neuroscience or psychology is or will be able to answer all our questions about capacity. The second, and more concerning, mistake is the conflation of decision‐making capacity with decision‐making authority.      

The Doctor‐Patient Relationship (When You're Neither)

Despite what I wrote in my medical school applications, my relationship with medicine wasn't always the torrid love affair I made it out to be. Organic chemistry wasn't really my favorite class (or my second favorite, or my third). My heart didn't actually skip a beat as I waited for protein isolates to complete their snail‐paced race across an agarose gel. And while I certainly enjoyed the surgeries I scrubbed into as an undergraduate, even they lost their charm during the fifth hour of standing at attention, hands glued to my chest, petrified I would break the sterile field or pass out from starvation. For me, a career in medicine was a leap of faith. I had to trust that those flashes of meaningful human interaction I experienced early on would increase in frequency and intensity over the course of my career. Fortunately, I have not been disappointed thus far.     

Expanding the Horizon of Our Obligations in the Clinician‐Patient Relationship

Johan Brännmark's article “Patients as Rights Holders,” in this issue of the Hastings Center Report, squarely identifies some important problems with the way we in clinical practice conceive of our obligations to our patients. As a solution, he helpfully suggests augmenting our focus on autonomy and informed consent with a broader menu of considerations drawn from the literature on human rights. Respect for autonomy is, of course, one of the hallowed principles of bioethics. In our traditional understanding, our patients deserve our respect because they are capable of autonomous choice, and the way we demonstrate our respect is by seeking their informed consent for our care. This model is so deeply ingrained that many of us have difficulty imagining that there could be any other way of thinking about it. But this model has two very serious drawbacks, problems that speak to much of what is wrong with health care today.     

“The Only Feasible Means”: The Pentagon's Ambivalent Relationship with the Nuremberg Code

Convinced that armed conflict with the Soviet Union was all but inevitable, that such conflict would involve unconventional atomic, biological, and chemical warfare, and that research with human subjects was essential to respond to the threat, in the early 1950s the U.S. Department of Defense promulgated a policy governing human experimentation based on the Nuremberg Code. Yet the policymaking process focused on the abstract issue of whether human experiments should go forward at all, ignoring the reality of humans subjects research already under way and leaving unanswered ethical questions about how to conduct such research. Documents newly released to the Advisory Committee on Human Radiation Experiments tell the story of the Pentagon policy.     

Time and Personhood across Early and Late-Stage Dementia

How do time and personhood become related when dementia sets in? This article brings together ethnographies from a memory clinic and a dementia nursing home in Copenhagen, Denmark, pursuing how personhood and time become intertwined across early and late-stage dementia. In the memory clinic, the dementia diagnosis is enacted and experienced simultaneously as an indispensable prophecy of discontinuity of personhood and life for the patients, and as a prognosis that renders the future indeterminate and open to intervention. In the nursing home, institutionalized care marks the fulfillment of the prophecy of decline, yet nursing home staff insist on practicing prognoses for the residents. Across our empirical sites, we enquire what the tension between prophecy and prognosis mean for personhood and the possibilities of the present, arguing that people with dementia are made and unmade through different understandings and enactments of future-oriented temporalities.