Maggie Taylor

Children are presumptively regarded as incompetent to make their own medical decisions, and the responsibility for making such decisions typically falls to parents. Parental authority is not unlimited, however, and ethical guidelines identifying appropriate bounds on this authority are needed. One proposal currently gaining support is the Harm Threshold (HT), which asserts that the state may only legitimately intervene in parental decision-making when serious and preventable harm to children is likely. This paper considers two questions: in virtue of what underlying principle or property does the HT gain its purported justification?; and does this underlying principle or property ground the HT as its proponents conceive of it? I identify two separate grounds represented in the literature: (i) J.S. Mill’s Harm Principle; and (ii) the liberty interests of parents. I find that the HT is not sufficiently grounded in either of these, revealing a substantial conceptual difficulty for its advocates.

This paper advances a novel conception of the child’s best interest in regard to pediatric surgeries that do not promote the preventive or therapeutic health needs of children, or elective pediatric surgeries (EPS). First, children’s capacity for decision-making is examined, and the best decision-making model for EPS is identified as the Best Interest Standard. What follows is a discussion of the interests of children in the context of EPS, the correlation of fundamental interests to rights, and guidelines for weighing children’s competing interests. Next, the rights and duties of parents as proxy decision makers are considered. Finally, a reinterpretation of the Best Interest Standard is proposed, identifying as paramount a child’s ability to make elective medical decisions for herself when she reaches maturity.

The Harm Threshold (HT) holds that the state may interfere in medical decisions parents make on their children’s behalf only when those decisions are likely to cause serious harm to the child. Such a high bar for intervention seems incompatible with both parental obligations and the state’s role in protecting children’s well-being. In this paper, I assess the theoretical underpinnings for the HT, focusing on John Stuart Mill’s Harm Principle as its most plausible conceptual foundation. I offer (i) a novel, text-based argument showing that Mill’s Harm Principle does not give justificatory force to the HT; and (ii) a positive account of some considerations which, beyond significant harm, would comprise an intervention principle normatively grounded in Mill’s ethical theory. I find that substantive recommendations derived from Mill’s socio-political texts are less _laissez-faire_ than they have been interpreted by HT proponents. Justification for state intervention owes not to the severity of a harm, but to whether that harm arises from the failure to satisfy one’s duty. Thus, a pediatric intervention principle derived from Mill ought not to be oriented around the _degree_ of harm caused by a parent’s healthcare decision, but rather, the _kind_ of harm—specifically, whether the harm arises from violation of parental obligation. These findings challenge the interpretation of Mill adopted by HT proponents, eliminating a critical source of justification for a protected domain of parental liberty and reorienting the debate to focus on parental duties.

In lieu of an abstract, here is a brief excerpt of the content:Difficult, Difficult, Lemon, DifficultMaggie TaylorI like to joke that my husband is a lemon—he suffers from manufacturing defects that prevent his body from functioning as intended. Illnesses other 40-somethings recover from quickly are things that land him in the hospital for weeks on end. So, it was no surprise last year that an epileptic seizure led to aspiration pneumonia, admission to the lCU, intubation, multisystem organ failure, and a Helivac ride to a regional hospital for a higher level of care. I was told that his odds of survival were about fifty-fifty. At the time, I was training as a clinical ethics fellow, still relatively inexperienced but savvy enough to guess the true likelihood was probably lower. Doctors don’t usually like telling brutal truths to families.But the moral complexities of his treatment did not arise when he was on the verge of death. They came days later when he was getting better. He’d survived a major surgery, come off pressors, recovered from an acute kidney injury, did well on spontaneous breathing trials (SBTs), and tolerated sedation weaning. Ironically, this was the hardest part of the hospitalization for me. Some people tolerate endotracheal tubes. Others don’t. My husband is in the latter group. He’d even self-extubated on a prior hospitalization. This time, he was too weak to lift his arms. Instead of pulling at the tube taped to his face, he stared up at me with wild eyes that said I don’t know what’s happening but I hate it; make it stop.As his discomfort became more apparent, I pressed the intensivist, Dr. Roja1, about extubating. “He’s alert, following commands, and hit the benchmarks on his vent settings.”Dr. Roja responded by saying she didn’t feel my husband was ready. They would continue conducting SBTs and reevaluate the next day.She said the same thing the next day.And the next day. Then she suggested a trach evaluation. I rejected Dr. Roja’s proposed compromise. Forcefully.It wasn’t just that I had trouble seeing my husband in this state of confusion and discomfort, although I did. I also knew continued vent dependence was something he would not accept. Over the course of our relationship, we’ve talked a lot about what interventions my husband would tolerate under various circumstances. This makes sense, given my profession and his health problems. He doesn’t want to live no matter the costs, but only if he can do so without being a burden on those he loves or dependent on machinery long-term—which, for him, means a few weeks.This is what I told Dr. Roja. At least, this is what I think I told her. It’s doubtful I stated my reasoning [End Page 28] half that clearly, given my emotional, physical, and cognitive state. It had been two weeks since my husband was admitted, and I was depleted. I was living in a hotel across from the hospital, wasn’t eating, and had fallen back into the vice of smoking cigarettes. Exhaustion and stress had made me combative: I had to defend my husband against this doctor who refused to do the right thing and take the tube out.In what felt like a last-ditch effort to get me off her back, Dr. Roja suggested an ethics consult. It was embarrassing that the intensivist was the one to suggest ethics involvement. Consumed as I was by my job as my husband’s advocate, I had forgotten my actual job.The team was able to put together a family meeting within hours. Beforehand, the ethicist came to my husband’s room and introduced herself to me and my mother.“I work in ethics too, as a clinical ethics fellow,” I said.She responded: “Oh.”That was all. Not even a word, but a sound. I don’t know what response I wanted, but that wasn’t it. This made me suspicious of the process.My mother and I joined the ethicist, Dr. Roja, and a palliative care physician in the family room. Dr. Roja led with a summary of my husband’s clinical condition...

In lieu of an abstract, here is a brief excerpt of the content:Full Collection of Personal NarrativesAustin Morris, Lisa P., Jeanne Kerwin, Jean Watson, Eve Makoff, Brent R. Carr, Anonymous One, Michelle Prong, Laura J. Hoeksema, Tracy R. Wilson, Frances Rieth Maynard, Laura A. Katers, and Maggie Taylor• Against Their Wishes: The Gift of a Goodbye• Lisa’s Story• Unbefriended• The Clinical Ethics Consult: Transforming Ambivalence to Action• Side Stepping The Issues: Disappointment With An Ethics Consult For A Medically High Risk Patient• My Father Dies Alone• Whose Voice Matters? The Role of Ethics Consultation in Supporting the 16-Year-Old Healthcare Decision-Maker of a Critically Ill Neonate• The Healing Power of an Ethics Consult• Clinical Ethicists: Can They Help Families in Their Times of Need?• “It’s All Personal”• Fault Lines• Difficult, Difficult, Lemon, DifficultCopyright © 2024 Johns Hopkins University Press...