Brain Death, Paternalism, and the Language of “Death”

Abstract

The controversy surrounding the dead donor rule and the adequacy of neurological criteria for death continues unabated. However, despite disagreement on fundamental theoretical questions, I argue that there is significant (but not complete) agreement on the permissibility of organ retrieval from heart-beating donors. Many disagreements are rooted in disputes surrounding language meaning and use, rather than the practices of transplant medicine. Thus I suggest that the debate can be fruitfully recast in terms of a dispute about language. Given this recasting, I argue that the language used to describe organ donation is misleading and paternalistic. Finally, I suggest that the near-agreement on the permissibility of heart-beating organ retrieval ought to be reconsidered. If the paternalism is not justified, then either the language used to describe organ transplantation must change radically, or it would seem to follow that much of the transplant enterprise lacks ethical justification.

A narrative review of the empirical evidence on public attitudes on brain death and vital organ transplantation: the need for better data to inform policy

“…In particular, three facts seem important for the public to understand. First, though brain dead patients have permanently lost consciousness and the ability to breathe independently, with the support of mechanical ventilation they can continue, for varying periods of time, to maintain vital functions such as circulation, respiration, temperature regulation, digestion, excretion of wastes and fighting infections 4 7. Second, brain death is a legal standard for determining death in many jurisdictions around the world 1.…”

Clinical and ethical perspectives on brain death

“…46,47 In recent years, the debate has seen renewed vigor. 25,[48][49][50][51] This unusual situation of a mostly accepted practice combined with persistent dispute about its moral, conceptual, and scientific foundations has been described as a "superficial and fragile consensus", 52 as "well settled yet still unresolved", 53 and the concept of brain death as being "too flawed to endure, too ingrained to abandon". 54 (For more extensive reviews of the philosophical and ethical literature on brain death, see DeGrazia 55 and Nair-Collins.…”

“…33,50,51,[63][64][65][66][67][68] Although such patients are dependent on technology without which the patient would be dead, in and of itself this does not mean that such patients are already dead, otherwise any other patient who is dependent on a ventilator, dialysis, a pacemaker, or even insulin for that matter, would also be dead.…”

“…Although they are not conscious and do not make spontaneous inspiratory efforts, such patients nonetheless exhibit the "vital work" of an organism by being receptive to and acting upon their environment through fighting infections, healing wounds, maintaining body temperature, metabolizing nutritive products and generating waste, exchanging gases through the lungs, and so on. 51,[70][71][72] As mentioned above, the argument that brain death is not the same as biological death has been around since the beginning of these debates. 57 Some have argued from the start that at its core, this is not a biological question, but rather is one for social policy or is one about philosophical conceptions of the essential nature of humanity.…”

“…At the very least, it is an undisputed fact that there is significant academic debate about whether heart-beating organ procurement kills the donor, and some have argued that failing to disclose this uncontested fact to the general public, to potential donors making the decision whether to register their consent to donate, and to families making surrogate decisions, is itself ethically problematic. 51 There is substantial confusion among the public about both brain death and organ procurement. In a recent review of the international literature on public beliefs and attitudes, Shah et al 86 found misunderstanding about basic clinical facts about brain death, about the legal status of brain death, and about the process of organ procurement, particularly that it takes place while the donor remains on the ventilator with a beating heart.…”