Does the Respect for Donor Rule Respect the Donor?

In an effort to meet both the utilitarian goal of increasing the organ supply and the deontological injunction of respect for persons, Elysa R. Koppelman (2003) recommends replacing the dead donor rule with a respect for donor rule. I argue that Koppelman's proposed respect for donor rule falls short of the deontological requirement by harming the vulnerable donor, the donor's family, and healthcare providers. The utilitarian advantage might be attained under the respect for donor rule, but at too great a cost.

Koppelman's proposed respect for donor rule holds that healthcare providers may ethically procure vital organs from a formerly decisional adult who is now permanently neurologically devastated (but not brain-dead) provided the donor's advance directive stipulates that under such circumstances the donor would want both

1. to discontinue life-sustaining treatment; and

2. to donate vital organs.

Koppelman maintains that a declaration of death is not necessary to procure organs from the "suspended state" patient, because we can best meet our duty to respect the patient by honoring her advance directive.

The respect for donor rule raises several decisive concerns. First, the rule gives priority to choices that a now vulnerable and incapacitated patient made in a prior directive. These choices apply to a person who is now utterly isolated (by virtue of neurological impairment) from the social and familial matrix that shaped her identity. One must therefore ask, how should the person shaped by isolation be subject to the choices made when the individual was not isolated? If personal identity changes when the capacity to relate to others is rendered permanently absent, it follows that what is required to respect the autonomous person of the past might differ from what is required to respect the vulnerable and isolated person of the present. After all, respect for persons consists of both "the requirement to acknowledge autonomy and the requirement to protect those with diminished autonomy" (National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research 1979).

Further, the respect for donor rule conflates the distinction between respect for persons and respect for autonomy. The requirement to respect the patient's autonomy is based upon the more fundamental ethical stance that patients themselves merit respect. An advance directive aims to express the autonomy of the person executing it. However if we honor a patient's autonomy in order to respect the patient as a person, then the requirement to respect patient autonomy lacks ethical support when it entails a lack of respect for the person. As The Belmont Report wisely states, "To respect autonomy is to give weight to autonomous persons' considered opinions and choices" (National Commission; emphasis added). It does not mean allowing a directive (ostensibly written to direct future decision making) to trump genuine ethical reflection and medical decision making. The particular clinical, social, and moral circumstances of the patient's situation deserve consideration at the time that treatment or donation decisions are to be made. Alone, a written directive is too general (and often written too far in advance) to address these complex features fully.

A further objection to Koppelman's proposed rule appeals to the value of personal integrity. Koppelman maintains that we respect a person by attending to the person's "history" or what I call "integrity." By "integrity" I mean the complex of preferences, experiences, values, and relationships that form the person over time, from which we glean what the incapacitated person might desire under a substituted judgment standard (Dudzinski 2001). An advance directive certainly influences healthcare decisions, but the patient's loved ones influence these decisions as well. After all, the patient's history and integrity have been formed through relationships with these loved ones. These intimate others shape her, and she them. In minimizing harm to loved ones, we respect the permanently unconscious patient by also respecting those whom she respected.

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