Audrey Hutchinson, MJLST Staffer
In the 18th and 19th century, the coffins of newly deceased lay six feet below, but were often outfitted with a novel accessory emerging from the freshly turned earth: a bell hung from an inconspicuous stake, its clapper adorned with a rope that disappeared beneath the dirt.[1] Rather than this display serving as a bygone tradition of the mourning process—some symbolic way to emulate connection with the departed—the bell served a more practical purpose: it was an emergency safeguard against premature burial.[2] The design, and all its variously patented 18th and 19th century designs, draws upon a foundational—and by some biopsychological theories, a biologically imperative—quality: fear of death.[3]
In the mid-1700’s, the French author Jacques Benigne Winslow published a book ominously titled The Uncertainty of the Signs of Death and the Danger of Precipitate Interments and Dissections, marking a decisive and public moment in medical history where death was introduced as something nebulous rather than definite to a highly unsettled public.[4] For centuries, medical tests and parameters had existed by which doctors could “affirmatively” conclude a patient had, indeed, passed.[5] While the Victorian newspapers were riddled with adverts for “safety coffins” in a macabre, but unsurprising expression of capitalism in the wake of mounting cholera deaths and the accompanying rate of premature burial reports, efforts to evade the liminal space of “dying” and the finality of “death” can be seen as far back as ancient Hebrew scriptures, wherein resuscitation attempts via chest compressions are described.[6] Perhaps this is unsurprising: psychologist and experimental theorist Robert C. Bolles conceptualized that fear is “a hypothetical cause [motivation] of behavior” and that its main purpose is to keep organisms alive.[7] Perhaps there has always been a subconscious doubt or suspicion about the finality of death, or perhaps it was human desperation and delusion arising from loss that has left behind an ancient record of fear and subsequent acts of defiance in the face of death still germane today.
Contemporarily we see the fruits of this fear of dying, death, or being somewhere in between in the form of advances in medical technology and legal guidelines. Though death is still commonly understood to be a discrete status—a state one enters but cannot exit—medical and legal definitions have, over time, evolved approaching death more gingerly—the former understanding death as a nuanced scale, the latter drawing hard lines on that scale.[8] Today, 43 states have enacted the Uniform Law Commission’s Uniform Determination of Death Act (“UDDA”).[9] The UDDA requires two distinct standards be met for someone to effectively, and legally, be deemed dead: 1) the irreversible cessation of circulatory and respiratory functions, and 2) the irreversible cessation of all functions of the entire brain, including the brainstem.[10] The UDDA’s legal determination of death, in its bright line language, relies in large part on “generally accepted medical standards” of the medical practice and practitioner discretion. While the loss of respiratory, circulatory, and total brain death of the entire brain are the common parameters of determining death medically, the UDDA is distinctly “silent on acceptable diagnostic tests [and] procedures.” It is argued that the language is purposeful in creating statutory flexibility in an era of constant scientific and medical research, understanding, and innovation.
As it relates to brain death, the medical approach to determining is a scale that contemplates brain injury/activity and somatic survival, a “continuous biological spectrum”[11] that naturally contemplates not only a patient’s current status, but the possibility and likelihood of both degenerative and improved changes in status. But, as a matter of policy and regulation, the UDDA drew a bright line between the two and called it brain-death. Someone in a permanent vegetative state is not considered braindead, but someone with a necrotic “liquified” brain is. As a result, the medical determination of death is arguably subservient to the legal determination, designating a point of no return–not because the medical professionals see no alternate path, but the law has provided a blindfold required from that point forward.
While this may be an efficient way to ensure people are not denied advanced and improved medical practices, it also means that there is ambiguity and variance from state to state as to the nature of governing factual guidelines and standards. There are practical and policy reasons for this, including maximizing efficacy and reach of organ donation systems and generally preventing strain on healthcare resources and systems; nonetheless, the brightline fails to be so bright. While the Commission could have situated the UDDA such that the determination of legal brain death and medical brain death worked in tandem, being triggered at some distinct moment by certain explicit conditions or after certain standardized medical tests, it did not.
Is that because it will not, or because it simply cannot do so? Today, the standards become increasingly muddied by advancements in technology to prolong life that have, in turn, paradoxically, also prolonged the process of dying—expanding the scope of that liminal space. Artificial means of keeping someone alive where they otherwise could not stay so imperatively creates a discrete state of the act of dying. New legal and medical methods of describing these states have become imperative with lively debate ongoing concerning bridging the medical-legal gap concerning death determination[12]—specifically, the distinction between the “permanent” (will not reverse) and “irreversible” (cannot reverse) cessation of cardiac, respiratory, and neurological function relative to the meaning of a determination of death.[13] James Bernat, a neurologist and academic who examines the convergence of ethics, philosophy, and neurology, is a contemporary advocate calling for reconciliation between medical practice with the law.[14] Dr. Bernat suggests the UDDA’s irreversibility standard—a function that has stopped and cannot be restarted—be replaced with a permanence standard—a function that has stopped, will not restart on its own, and no intervention will be undertaken to restart it.[15] This distinction, in large part, is attempting to address the incongruence of the UDDA’s language that, by the ULC’s own concession, “sets the general legal standard for determining death, but not the medical criteria for doing so.”[16] In effect, in trying to define and characterize death and dying, we have created a dynamic wherein one could be medically dead, but not legally.[17]
Upon his death bed, composer Frédéric Chopin uttered his last words: “The earth is suffocating …. Swear to make them cut me open, so that I won’t be buried alive.”[18] A century and a half later, yet only time will tell if law and medicine can find a way to reconcile the increasingly ambiguous nature of dying and define death explicitly and discretely—no bells required.
Notes
[1] Steven B. Harris, M.D. The Society for the Recovery of Persons Apparently Dead. Cryonics (Sept. 1990) https://www.cryonicsarchive.org/library/persons-apparently-dead/.
[2] Id.
[3] Id.; Shannon E. Grogans et. al., The nature and neurobiology of fear and anxiety: State of the science and opportunities for accelerating discovery, Neuroscience & Biobehavioral Reviews, Volume 151, 2023, 105237, ISSN 0149-7634, https://doi.org/10.1016/j.neubiorev.2023.105237.
[4] Harris, supra note 1.
[5] Id.
[6] Id.
[7] Grogans et. al., supra note 3.
[8] Robert D. Truog, Lessons from the Case of Jahi McMath. The Hastings Center report vol. 48, Suppl. 4 (2018): S70-S73. doi:10.1002/hast.961.
[9] Unif. Determination of death act § 1 (Nat’l Conf. of Comm’n on Unif. L Comm’n. 1981).
[10] Id.
[11] Truog supra at S72.
[12] James L. Bernat, “Conceptual Issues in DCDD Donor Death Determination.” The Hastings Center report vol. 48 Suppl 4 (2018): S26-S28. doi:10.1002/hast.948.
[13] James Bernat, (2010). How the Distinction between ‘Irreversible’ and ‘Permanent’ Illuminates Circulatory-Respiratory Death Determination. The Journal of Medicine and Philosophy. 35. 242-55. 10.1093/jmp/jhq018.
[14] Faculty Database: James L. Bernat, M.D. Dartmouth Geisel School of Medicine https://geiselmed.dartmouth.edu/faculty/facultydb/view.php/?uid=353 (last accessed Oct. 23, 2023).
[15] JD and Angela Turi, Death’s Troubled Relationship With the Law Brendan Parent, AMA J Ethics. 2020;22(12):E1055-1061. doi: 10.1001/amajethics.2020.1055; See also, Bernat JL. Point: are donors after circulatory death really dead, and does it matter? Yes and yes. Chest. 2010;138(1):13-16.
[16] Thaddeus Pope, Brain Death and the Law: Hard Cases and Legal Challenges. The Hastings Center report vol. 48 Suppl. 4 (2018): S46-S48. doi:10.1002/hast.954.
[17] Id.
[18] Death: The Last Taboo – Safety Coffins, Australian Museum (Oct. 20, 2020) https://australian.museum/about/history/exhibitions/death-the-last-taboo/safety-coffins/ (last accessed Oct. 23, 2023).
On October 28, 
As genetic research continues to develop, researchers are more apt to make incidental discoveries in the course of the research on a subjects DNA. 
Given the importance of results discovered by biorepositories and their implications for an individual’s health care choices, I believe that the individual has the right to receive his results despite their lack of verification. However, this right to receive results should be premised upon the individual’s explicit consent to receive his results, and upon the understanding that by receiving these results, the burden of their verification shifts from the biorepostory to the individual.
Professor