Beyond the “right to die” and the “right to life” debate in Disorders of Consciousness: Reframing the ethical concerns through the writings of Paul Ricoeur

Abstract

Much of the discussion of the ethical concerns involved in the care of those with Disorders of Consciousness (DOC) has been presented in terms of the dichotomous “right to die” / “right to life” (RTD/RTL) framework with nearly singular focus on (1) assessing whether the individual retains “consciousness,” and (2) making the “right” choices about the use of life sustaining treatments (LSTs). However, the lived experience of the family, friends and medical providers who have close contact with individuals with a DOC indicates that the ethical concerns involved cannot be reduced to the RTD/RTL framework, to proofs of consciousness, or to the right to make choices about treatment. Rather than advocate for a “right” choice in regards to use of LST in those with DOC, this essay utilizes the writings of Paul Ricoeur to illuminate the sources of our ethical confusion and to engage in deeper ethical reflection. I describe DOC from the perspective of neuroscience and review recent research. I then critique conceptions of autonomy and personhood within medical ethics, especially in so far as a model of consumer choice dominates conceptions of autonomy and cognitive capacity is considered a determinant of moral worth. I present Ricoeur’s understanding of autonomy as a relational project and his description of individuals as capable and fragile in varying degrees as an alternative. I proceed by examining the concepts of “sanctity of life” and “pain and suffering,” where I use Ricoeur’s description of all humans as acting and suffering, and his description of solicitude as the model for responding to suffering. I conclude with Ricoeur’s description of the ethical intention of “aiming at the ‘good life,’ with and for others, in just institutions” as an approach to analyzing ethical dilemmas and clarifying what it is at stake in various alternatives.