Research

PUBLISHED: The American Journal of Bioethics, 24(1), pp. 108-110 (2024)

ABSTRACT: Arian Lewis provides a comprehensive overview of how the United Kingdom’s medicolegal context manages challenges to determining death by neurologic criteria and suggests that a well-crafted statutory law would help clinicians resolve those disputes. I am not so sure. After serving as an Observer on the Uniform Law Commission’s (ULC) Drafting Committee for the Determination of Death Act, it is my opinion that the desire for legal guidance to settle disputes over DNC is a sign of weakness in the authority of medicine to deliver what it defines as the standard of care. This weakness was revealed in a dynamic I observed during the Drafting Committee’s work, specifically, that there had to be a robust medical and bioethical consensus in order to legislate legal guidance; yet if there was such a consensus, then legal guidance was not needed. Because the politics surrounding DNC in the US are changing, it is not likely that a well-crafted statute would be accepted across the US, or that it would effectively settle the disputes if it were accepted. 


PUBLISHED: Bioethics (ONLINE) 06 January 2024. With Christopher Bobier, Daniel J. Hurst, Daniel Rodger. https://doi.org/10.1111/bioe.13262

ABSTRACT: Preclinical xenotransplantation research using genetically engineered pigs has begun to show some promising results and could one day offer a scalable means of addressing organ shortage. While it is a fundamental tenet of ethical human subject research that participants have a right to withdraw from research once enrolled, several scholars have argued that the right to withdraw from xenotransplant research should be suspended because of the public health risks posed by xenozoonotic transmission. Here, we present a comprehensive critical evaluation of the claim that xenotransplant recipients should be required to waive their right to withdraw from lifelong biosurveillance. We conclude that if xenotransplantation requires participants to waive their right to withdraw, then clinical trials may not be justifiable, given the ethical and legal obstacles involved with doing so. Consequently, if clinical trials are permitted with a right to withdraw, then they may pose a significant public health risk.


PUBLISHED: HEC Forum. With Aziz Ansari and Kayhan Parsi (2023). https://doi.org/10.1007/s10730-023-09517-y 

ABSTRACT: Some of the most difficult consultations for an ethics consultant to resolve are those in which the patient is ready to leave the acute-care setting, but the patient or family refuses the plan, or the plan is impeded by deficiencies in the healthcare system. Either way, the patient is “stuck” in the hospital and the ethics consultant is called to help get the patient “unstuck.” These encounters, which we call “complex discharges,” are beset with tensions between the interests of the institution and the interests of the patient as well as tensions within the ethics consultant whose commitments are shaped both by the values of the organization and the values of their own profession. The clinical ethics literature on this topic is limited and provides little guidance. What is needed is guidance for consultants operating at the bedside and for those participating at a higher organizational level. To fill this gap, we offer guidance for facilitating a fair process designed to resolve the conflict without resorting to coercive legal measures. We reflect on three cases to argue that the approach of the consultant is generally one of mediation in these types of disputes. For patients who lack decision making capacity and lack a surrogate decision maker, we recommend the creation of a complex discharge committee within the organization so that ethics consultants can properly discharge their duties to assist patients who are unable to advocate for themselves through a fair and transparent process.  

PUBLISHED: The American Journal of Bioethics, 23(9), pp. 30-32 (2023)

ABSTRACT: Shavelson et al. argues that California’s End of Life Option Act (ELOA) violates the Americans with Disabilities Act (ADA), because the ELOA requires the patient to “self-administer” their prescription without assistance from others (Shavelson et al. 2022). The authors recommend that California’s judicial system grant a “reasonable accommodation” (as required by the ADA) that would interpret “assistance” to permit what the authors call “assisted self-administration” which allows caregivers to help the patient complete the already-initiated action. There are two problems with this proposal. The first is that the notion of “assisted self-administration” lacks coherence. What the authors recommend is better understood as patient-and-caregiver administration, which is a shared action, and would change the meaning of “self-administered” in the EOLA (and other healthcare laws) entirely if it were accommodated. Second, the proposal does not avoid unjust discrimination against persons with disabilities, specifically, those who would otherwise qualify for the EOLA but are unable to initiate an act of self-administration. I end by recommending that the EOLA ought to be repealed. 

PUBLISHED:  The American Journal of Bioethics, 23(2), pp. 20-22 (2023)

ABSTRACT: Nielsen Bush and Mjaaland argue that protocols designed to procure abdominal organs through controlled donation after circulatory death are consistent with the dead donor rule, including those that use normothermic regional perfusion (NRP). This consistency, they argue, does not depend on knowing the donor is dead before surgery begins; rather, it depends on knowing that the cause of the donor’s death will be unrelated to the surgery. I object for two reasons. First, their interpretation of the dead donor rule saddles the surgical team with a conflict of interest generated by the duty to protect the life of the donor from surgically-related death and the duty to protect the life of the transplantable organs. Second, it is not known that the cause of the donor’s death is unrelated to the surgery, because ligating vessels to occlude blood flow to the brain is meant to ensure death. Yet to ensure death is to intend death, which relates the cause of death to surgical intervention in a way the DDR forbids. 

PUBLISHED:  In Death Determination by Neurologic Criteria: Areas of Consensus and Controversy. Edited by Ariane Lewis and James Bernat. Springer International Publishing (2023), 479-489.

ABSTRACT: What does a team owe, if anything, to those who object to a declaration of death by neurologic criteria and request that supportive measures continue to be provided? We argue that a limited period of “reasonable accommodation” is permissible, but that “indefinite accommodation” for the preservation of the body until circulatory-respiratory failure is not. We give four reasons against offering indefinite accommodation: (1) there is no party to which a justifiable medical benefit accrues, (2) it undermines the professional integrity of the clinical teams involved and is unfair to the wider community, (3) it gives the family false hope for recovery and prolongs their grieving process, and (4) it produces societal confusion by permitting a negotiated and inconsistent standard of death.

PUBLISHED: Xenotransplantation. With Christopher Bobier, Daniel Rodger, and Daniel J. Hurst. Online First: December 27, 2022. doi: 10.1111/xen.12791. 

ABSTRACT: It is envisioned that one day xenotransplantation will bring about a future where transplantable organs can be safely and efficiently grown in transgenic pigs to help meet the global organ shortage. While recent advances have brought this future closer, worries remain about whether it will be beneficial overall. The unique challenges and risks posed to humans that arise from transplanting across the species barrier, in addition to the costs borne by non-human animals, has led some to question the value of xenotransplantation altogether. In response, we defend the value of xenotransplantation research, because it can satisfy stringent welfare conditions on the permissibility of animal research and use. Along the way, we respond to the alleged concerns, and conclude that they do not currently warrant a cessation or a curtailing of xenotransplantation research. 

PUBLISHED: Journal of Medical Ethics. Online First: November 25, 2022. doi: 10.1136/jme-2022-108701

ABSTRACT: Smith argues that death caused by transplant surgery will not harm permanently unconscious patients, because they will not suffer a setback to their interests in the context of donation. Therefore, so the argument goes, the dead donor rule can be abandoned, because requiring a death declaration before procurement does not protect any relevant interest from being thwarted. Smith contends that a virtue of his argument is that it avoids the controversies over defining and determining death. I argue that it does not and explain why no change in policy is justified. 

PUBLISHED: Theoretical Medicine and Bioethics 43 (1):1-27 (2022) 

ABSTRACT: There are increasing calls to reject the ‘dead donor’ rule and permitting ‘organ donation euthanasia’ in organ transplantation. I argue that the fundamental problem with this proposal is that it would bestow more worth on the organs than the donor who has them. What is at stake is the basis of human equality, which, I argue, should be based on an ineliminable dignity that each of us has in virtue of having a rational nature. To allow mortal harvesting would be to make our worth contingent upon variable quality of life of judgments that can only be based on properties that come in degrees. Thus, rejecting the ‘dead donor’ rule comes at the expense of our egalitarian principles with respect to the value each individual human life has in relation to the protections against killing.

PUBLISHED: Bioethics 36 (6): 648-654 (2022)

ABSTRACT: The dead donor rule (DDR) prohibits retrieval protocols that would be lethal to the donor. Some argue that compliance with it can be maintained by satisfying the requirements of double-effect reasoning (DER). If successful, one could support organ donation without reference to the definition of death while being faithful to an ethic that prohibits intentionally killing innocent human life. On the contrary, I argue that DER cannot make lethal organ donation compatible with the DDR, because there are plausible ways it fails DER's requirements. A key takeaway is that the theories of intention and proportionality assumed in DER matter for its plausibility as a constraint on practical reasoning. 

PUBLISHED: Lead author with James Bernat, Art Caplan, David Greer, Christos Lazaridis, Ariane Lewis, Thaddeus Pope, Lainie Friedman Ross, David Magnus. Neurology. doi: https://doi.org/10.1212/WNL.0000000000200024 

ABSTRACT: Although the Uniform Determination of Death Act (UDDA) has served as a model statute for 40 years, there is a growing recognition that the law must be updated. One issue being considered by the Uniform Law Commission’s Drafting Committee to revise the UDDA is whether the text “all functions of the entire brain, including the brainstem” should be changed. Some argue that the absence of diabetes insipidus indicates that some brain functioning continues in many individuals who otherwise meet the “accepted medical standards” like the American Academy of Neurology’s. The concern is that the legal criteria and the medical standards used to determine death by neurological criteria are not aligned. We argue for the revision of the UDDA to more accurately specify legal criteria which align with the medical standards: brain injury leading to permanent loss of a) the capacity for consciousness, b) the ability to breathe spontaneously, and c) brainstem reflexes. We term these criteria “neuro-respiratory criteria” and show that they are well-supported in the literature for physiological and social reasons justifying their use in the law. 

PUBLISHED: The Journal of Medicine and Philosophy, 46 (5):530–560. doi: https://doi.org/10.1093/jmp/jhab021

ABSTRACT: The biophilosophic justification for the idea that brain death is death needs to support two claims: (1) that what dies in human death is a human organism, not merely a psychological or social entity distinct from it; (2) that total brain failure signifies the end of the human organism as a whole. Defenders of brain death typically assume without argument the first claim is true and argue for the second by defending the “integrative unity” rationale. Yet the integrative unity rationale has fallen on hard times. In this paper, I give reasons for why we should think of ourselves as organisms, and why the “fundamental work” rationale put forward by the 2008 President’s Council is better than the integrative unity rationale despite persistent objections to it.

PUBLISHED : Journal of Medical Ethics. Online First: 26 October 2020. doi: 10.1136/medethics-2020-106781 (co-authored with Christopher Bobier)

ABSTRACT: Giubilini and Minerva argue that the permissibility of abortion entails the permissibility of infanticide. Proponents of what we refer to as the Birth Strategy claim that there is a morally significant difference brought about at birth that accounts for our strong intuition that killing newborns is morally impermissible. We argue that strategy does not account for the moral intuition that late-term, nontherapeutic abortions are morally impermissible. Advocates of the Birth Strategy must either judge nontherapeutic abortions as impermissible in the later stages of pregnancy or conclude that they are permissible on the basis of premises that are far less intuitively plausible than the opposite conclusion and its supporting premises. 

PUBLISHED: Theoretical Medicine and Bioethics 39 (1):1-25 (2018)

ABSTRACT: Although much has been written on the dead-donor rule in the last twenty-five years, scant attention has been paid to how it should be formulated, what its rationale is, and why it was accepted. The DDR can be formulated in terms of either a Don’t Kill rule or a Death Requirement, the former being historically rooted in absolutist ethics and the latter in a prudential policy aimed at securing trust in the transplant enterprise. I contend that the moral core of the rule is the Don’t Kill rule, not the Death Requirement. This, I show, is how the DDR was understood by the transplanters of the 1960s, who sought to conform their practices to their ethics—unlike today’s critics of the DDR, who rethink their ethics in a question-begging fashion to accommodate their practices. A better discussion of the ethics of killing is needed to move the debate forward.

PUBLISHED: The Journal of Medicine and Philosophy 44(6): 663–676 (2019)

ABSTRACT: In this paper, I introduce the ideas to be discussed in the articles of this journal with reference to an imaginary case involving a pregnant woman declared dead on the basis of neurological criteria. I highlight the fact that although these ideas have proved useful for advancing certain claims in bioethical debates, their implications are not always well understood and may complicate our arguments. The ideas to be discussed are (1) an ethic internal to the profession of medicine; (2) the difference between killing and letting die; (3) the organism as a whole; and (4) the “lives” and interests of the dead. 

PUBLISHED: The Journal of Medicine and Philosophy 43(6): 369–380 (2018)

ABSTRACT: The themes of this issue—which include the meaning of our health and disease concepts, the so-called “medical gaze” and its embedded power relations, and the epistemic value of mixing therapy with research—are introduced by reflecting on a case about an infant girl whose head is observed to be somewhat flat. 

PUBLISHED: Journal of Medical Ethics  41 (8):661-662 (2015)

ABSTRACT: Walter Sinnott-Armstrong and Franklin G Miller recently argued that the wrongness of killing is best explained by the harm that comes to the victim, and that ‘total disability’ best explains the nature of this harm. Hence, killing patients who are already totally disabled is not wrong. I maintain that their notion of total disability is ambiguous and that they beg the question with respect to whether there are abilities left over that remain relevant for the goods of personhood and human worth. If these goods remain, then something more is lost in death than in ‘total disability,’ and their explanation of what makes killing wrong comes up short. But if total disability is equivalent with death, then their argument is an interesting one.