Nora L. Jones, PhD
Associate Director, CBUHP
While the principle of autonomy is useful and needed, as a concept, it could benefit from an anthropologically-informed revision. Attention to the principle of autonomy does effectively serve to guard against paternalism and coercion in clinical care and research. Conceptually, however, it suffers from an underlying disembodied, and at times a-contextual, understanding of the individual. An autonomous person in bioethics is defined as rational, informed, un-coerced, and able to express free will. This individual may talk about her choices with her family and loved ones, but it is assumed that the decision is and should be hers alone. The concept of ‘shared decision-making’ is gaining some traction in relation to health care choices, but it generally refers to negotiations between the practitioner and the patient. I would like to broaden that conception of shared and propose an expanded and embodied concept of self, so that the self of this patient actually may include those others important over the course of her life, her family and loved ones, and in cases of illness, practitioners as well.
I do not mean by this only that an individual makes decisions after consulting with or taking into consideration others in her life. While this is true, for it is rare that autonomy is equated with a complete isolated selfishness (although for some it could), I mean something more literal — that who she is today, and how she makes decisions, is due to her history of interactions with others. It is an ‘expanded self,’ the result of a lifetime of moving through the world, an ever-evolving product of a continual process of embodiment.
I am arguing that we should consider not an abstracted philosophical ‘mind-self,’ but an empirical ‘body-self,’ on a phenomenological level. It is a self that is constituted through experience, not something a priori. Instead of assuming only a self from whom decisions and future projections are made, we need to consider that the self is a product of something as well. To help see what this something is, to visualize an embodied life, imagine a Slinky©, along whose coil the body-self moves in a continuous process, in which every turn directly relates to the turn before it. The coils are turned not solely from an internal self-propelling motor, but in response to the environment, illness, love, joy, hardship, disability. The coils can be pulled apart, so that change happens slowly, or compressed in times of rapid change. If we fail to actively acknowledge this, as the current dominant concept of autonomy implicitly does, then we are acting on a different model, a Slinky© that is continually cut, starting anew, with no base or recognition of the formative importance of all the spirals that have come before.
These two models point to a fundamental difference between how medicine and bioethics conceptualize the person, and how a life is lived, understood anthropologically. Medicine and bioethics utilize, when discussed philosophically, a thinking mind abstracted from the body. The body may be the site of illness and the locus of the interventions, but it is the mind that serves as the locus of the decision. We see this understanding, for example, underlying living wills, when we ask people to use their current state to make decisions about their future states. We also see it in other end of life discussions, Dax’s case perhaps the most famous example, when an individual’s current physical condition is given less credence in evaluating patients’ capacity as compared to their mental state at the prime of their life. Alternatively, the theory of embodiment argues that we cannot ask the person from the past to make decisions for the present person because the person at the end of life, or in the throws of a critical or terminal illness, is in fundamental ways not the same person as the earlier healthy author of the living will.
Many bioethicists and clinicians would argue that their thinking about autonomy is intimately tied to the whole person, but the social constructions and epistemological assumptions of their fields tell a different story. Philosophical bioethics and medicine each hold certain shared understandings of what is valid and what is objective. Informed consent sessions, a competent patient signing treatment authorizations, and arriving at decisions after a consequentialist or deontological process are each valid. In medicine, what is valued as valid is the test result, the image of the problem, the localized site of the disease. To appreciate the pervasiveness of this way of thinking, think about how chronic pain sufferers are treated in medicine. Subjective experience, in such that it is not integrated into the ontology of medicine or philosophical bioethics is seen as noise, peripheral. The true self is understood to be the result of a process of conscious reflection, of an objectification of accumulated attitudes and beliefs. The embodied self, on the other hand, integrates the conscious, the lived, the felt, and the experienced.
And so what is the point of revising the concept of autonomy in this way? A central implication is that it forces a reevaluation of how we understand the autonomous individual, traditionally defined as rational, informed, un-coerced, and able to express free will. Taking rationality first, questions of rationality and labels of irrational are often raised when a patient expresses wishes that are antithetical to the advice and perspective of the care team or the individual’s family. Psychological and psychiatric consultants are brought in to address the problem in the patient, or more specifically, in her ‘mind-self.’ To call on the Slinky© analogy, it might be more fruitful to examine a patient’s seemingly irrational perspective by asking what the conflict looks like when we imagine her coils, come to this moment in time, interacting with the coils of the other key players — for the concept of an embodied individual applies not only to patients, but to everyone, family members and practitioners included. Medical conflicts are like multiple Slinkies tangled and intertwined at the bottom of a toy box. The question to be asked of an ‘irrational’ patient is not why is she making this ‘irrational’ decision, but how has she come to make this decision, what turns and twists has her life (her Slinky©) taken that leads her to project a certain future and thus make this decision she is making? In the context of an entire embodied life, choices may become more ‘rational’.
An embodied understanding of the self also has implications for what it means to be informed. Past experiences and pathways influence the uptake of new information. Practitioners are often frustrated when, after what they feel is a good informed consent session, patients may act in ways that make it seem like they actually understood little of the information. It’s not that they didn’t get it (although of course it may be — and here I am purposefully not talking about individuals with mental cognition problems), but that how they got it is more nuanced than a straightforward information transfer. New information selectively joins the flow of the life already in progress, in the momentum of the Slinky©.
To the points of coercion and free will, while the principle of autonomy should remain as a safeguard against forceful coercion by outsiders, embodiment complicates the question of free will. I believe in free will, but just as with the individual who is best seen as an embodied self, free will must be bound with the embodiment of the person. Do I go so far as to say there is no free will — no. But it is a limited freedom, bound by the parameters of our learned expectations.
Revising the concept of autonomy with the perspective of the embodied self can also lead us to ask different questions. Transplant bioethics, for example, is dominated by questions of supply and demand, of compatibility, and of justice. The mind-self dominates the body-self when we think of transplant as having a spare part replaced. But after the extended time (or at least extended for most, the rare celebrity transplant case excluded) of illness and waiting, the person on the cusp of a transplant has already been irrevocably changed. Her path down the Slinky© has taken too many turns and those turns cannot be spliced out. Post-transplant care, in addition to working towards good graft survival, would do well to take embodiment seriously to ensure that the holistic health of the person is good too, as she integrates both her new organ and her new body into her embodiment.
In these ways, I believe that a revised concept of autonomy, to undergird the principle, leads bioethics towards a more ethical, in the sense of more respectful and understanding of the whole person, engagement with the subjects under consideration.