Disability or Death: A Focused Review of Informed Consent in Pediatric Neurosurgery

Shlobin, Nathan A.; Kolcun, John Paul G.; Leland, Brian D.; Ackerman, Laurie L.; Lam, Sandi; Raskin, Jeffrey S.

doi:10.1016/j.spen.2022.101030

Cited by 2 publications

(1 citation statement)

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“…While personally transformative choices can be found elsewhere in medicine, note that they characteristically take a different form which is distinct when considering informed consent. Challenging pregnancies or deliveries, or some cases of pediatric neurosurgical disease (Shlobin et al, 2022), bring to light the reality that there are some medical contexts in which all roads lead to transformative experience-for example the choice between living with the death of a child or with a permanently disabled child. Any available treatment option (or electing not to treat) is liable to profoundly change how you see yourself, how you see the world, or what is important to you.…”

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confidence: 99%

Transformative experience and informed consent to psychedelic-assisted psychotherapy

Jacobs

2023

Front. Psychol.

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Just as psychedelic-assisted psychotherapy (PAP) represents a clinical innovation that may need to be accommodated with corresponding theoretical and methodological innovations, there is growing awareness that the tools, normative frameworks, and standard practices of our clinical ethics may also need to be adapted, renewed, or replaced to accommodate its unusual features. Drawing on L. A. Paul's work on “Transformative Experience,” I argue that the acute and long-term effects that are repeatedly reported following the administration of psychedelic drugs, including in clinical contexts, are epistemically inaccessible at the point of deciding to take them. By virtue of both the so-called “mystical” experiences that frequently arise during PAP, and the long-term shifts to outlooks, values, and priorities that can follow treatment, the processes of decision-making that are normatively expected of patients run aground. If this framing is correct, then prospective patients cannot meet the requirement of understanding that is one of the principal analytic components of informed consent. The role of understanding in supporting two functions of informed consent—avoiding unauthorized trespass against patients and supporting values-aligned decision-making—is explored, and I argue that, while the normative standard for the first function may be met by extant suggestions for enhancing the consenting process for PAP, the latter function remains unattainable. In light of this, the consequences for the ethical preparation of prospective patients are considered.

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confidence: 99%