Recently, two very different but equally thought-provoking articles were published within a day of each other on the Bioethics Today blog. After reading both, I found they were like two sides of the same coin when thinking about disability ethics. Wolfe and Escandon wrote about a difficult surrogacy story involving hypoplastic left heart syndrome, or HLHS, and described hypoplastic left heart syndrome (HLHS) mainly through suffering, burden, and low quality of life. Elster, Parsi, and Caplan called out political rhetoric that portrayed disabled lives through dependency and low possibility. Of course, the contexts and ethical questions are not the same. But reading the articles, one after the other, left me wondering about the messages bioethics sometimes sends about disability.
I wondered what a person living with HLHS might think about when reading an account of a life like theirs, framed by burden and premature death. In their article, Wolfe and Escandon’s descriptions of HLHS, its lifesaving interventions, and a life beyond those interventions were understandably bleak. While such a portrayal is reasonable given the medical challenges of HLHS, it may inadvertently suggest to the disability community that lives shaped by disability or complex medical needs are inherently less valuable or fulfilling.
It made me wonder: If ableist portrayals of disability deserve scrutiny when they shape public attitudes and policy, should they receive any less scrutiny when similar medical tragedy models are communicated by bioethicists whose expertise may influence how families imagine the possibilities of a disabled child’s life?
A recent case in Texas involved an Alaska surrogate and intended parents in California. Reports stated that their agreement contained a termination clause addressing fetal abnormalities. At about twenty weeks, the fetus was diagnosed with HLHS. The Associated Press, reporting on court documents, revealed the intended parents sought termination of the pregnancy after medical consultations, but the surrogate later refused.
HLHS is a serious diagnosis, and it requires staged surgeries and lifelong cardiac care. But advances in surgical and specialized cardiac care have substantially improved outcomes, with one-year survival increasing from 43% in the 1980s to 80% in 2023. In fact, a recent study from the Children’s Hospital of Philadelphia (CHOP) that followed patients who underwent staged surgeries from 1984 to 2023 found that most surveyed adults reported good-to-excellent general health and quality of life. Ultimately, the diagnosis of HLHS is serious, but diagnosis alone cannot establish that the resulting life will have an unacceptable quality of life.
In their article, Wolfe and Escandon understandably emphasized the seriousness of HLHS and the burdens of treatment. They wrote that “surviving patients have limitations in quality of life,” and that some loving parents may conclude that the treatments and risks are “out of proportion to any of the potential benefits.” Proportionality is a valid clinical ethics concept that weighs an intervention’s benefits against its burdens. But when treatment proportionality migrates into what I would call “existential proportionality,” it creates a bioethical tension. (I use that phrase descriptively, not as an established clinical doctrine). It goes from “Are the burdens of the surgery proportionate to the benefits?” to “Are the possible burdens of this child’s life proportionate to the benefits of that life?” The second question projects an unknown future and assigns a moral weight to disability before life has begun.
What would a person living with HLHS hear in an ethical analysis questioning if their life has a “proportionate benefit” to its burdens? They may ask whether the language of proportionality can overlook the values we bring to judgments about disability.
Wolfe and Escandon also recognized that, after birth, parents may choose among medically and ethically permissible options, including staged palliation, transplantation, and comfort care. Comfort care can be an ethically appropriate choice for a newborn with HLHS because the condition may be accompanied by significant genetic, neurologic, or other extracardiac conditions that can alter prognosis. These comorbidities may make the burdens of staged palliation disproportionate to its potential benefits. But that is different from projecting the burdens or value of a child’s future life from an HLHS diagnosis itself.
The subsequent course of this Texas case makes it relevant. Born on August 12, the baby was determined to be eligible for surgery. He underwent the Norwood procedure on August 17, and he was reported to be recovering–but in serious condition. None of this treatment guarantees his future or lessens the serious issues associated with his diagnosis. But this case does invite an important question: if uncertainty about future suffering and treatment burdens weighs ethically in favor of comfort care, shouldn’t the other side of that uncertainty (like the possibility of survival and a life) receive comparable weight?
Disability scholars have cautioned for many years that reproductive and medical decisions do not happen in a value-neutral information environment. Adrienne Asch described the tendency to allow a disability diagnosis to represent a whole person. She and David Wasserman used the rhetorical device called Synecdoche, where one characteristic becomes predictive of an entire future. Joseph Stramondo has also argued that tensions between disability bioethics and mainstream bioethics are, in part, differences in the assumptions non-disabled people make about the lived experiences of disabled people. The concerns are again reinforced when we hear about the “disability paradox” where people living with disability often report a better quality of life than their nondisabled observers.
Altogether, this scholarship gives reason to scrutinize descriptions of a future life as burdensome, dependent, suffering, etc. Empirical studies of medicine can estimate morbidity and mortality, but they cannot determine the burden of a disabled life. That is a value judgement based on one’s own assumptions about a future person whose life, relationships, adaptations, and happiness remain unknown.
The issues described in this essay are why the contrast of the two articles in the Bioethics Today Blog matters. If assumptions matching disability with diminished human value are receiving scrutiny when they appear in public health policy, then they should not be invisible when they come up in reproductive or neonatal decision-making as well.
Kyoko L. Yoda, DMD, MSPH, MSD is an instructor at Children’s Hospital Colorado.