The family inside (out): reflections on digital advance directives and ethics in film

Dr Michiel De Proost, Caroline Miles Visiting Scholar

The concept of advance directives and its relationship with respect for autonomy has long been contested in medical ethics. The urgency of resolving these debates has only increased with the emergence of new technologies. In recent years, several computer-based decision aids have been proposed to address major shortcomings of traditional advance directives.

During my time as the Caroline Miles Visiting Scholar at Ethox, I explored the ethical complexities surrounding digital advance directives, drawing on both relational and family ethics frameworks. One of the most thought-provoking avenues for this exploration was the annual Ethics in Film event, which featured Alejandro Amenábar’s The Sea Inside (Mar Adentro) and was screened at the independent Oxford cinema, The Ultimate Picture Palace.

While the film does not explicitly engage with advance directives, its narrative—based on the life of Ramón Sampedro, a man fighting for the legal right to end his own life—foregrounds the experience of loss, particularly the loss of agency in later life. This theme resonates with broader philosophical concerns surrounding digital advance directives, where the emphasis on individual autonomy often side lines the role of family and loved ones, but it relates also with other themes (as Rosemarie Garland-Thomson has noted, the film has been criticized for making the wrong kind of statement regarding disability—one that portrays it as necessarily marking the end of a fully lived life). In practice and in ethical theory, there remains a persistent discomfort—especially among healthcare professionals and some ethicists—with relying on family members as proxy decision-makers.

In the film, the difference between the individual will and family members is further contrasted by two spaces, both of which are laden with metaphorical significance: first, interior and intimate spaces, such as the room in a modest country family house in Galicia; and secondly, the open spaces of dramatic Galician landscapes as well as the sea and mountains over which the camera soars like a bird. These two different spaces are metaphorical representations of two states: on the one hand, his current suffering, and, on the other, his burning desire to be free and the liberation of his future death.

But is this scepticism toward family members truly warranted? While agency is often conceptualized as an individual capacity, close relationships—especially those between partners or family members—frequently involve deeply shared experiences that shape how people understand themselves and one another. Over time, such bonds give rise to a kind of mutual identity, where individuals grow into each other’s narratives and decision-making frameworks. As Hilde Lindemann observes in her chapter Feminist Approaches to Advance Directives, “People in bonded relationships have something more than a rich and detailed knowledge of the other: they may also have a sense of common purpose, a tacit awareness of being in this together, a mutual upholding of each other’s lives and selves in one way or another.” From this perspective, what becomes most crucial in moments when individuals cannot speak for themselves may not be a written directive, but rather the presence of someone who has come to share in their deliberative outlook—someone capable of exercising agency by proxy not as a mere substitute, but as a relational extension of the person themselves.

Perhaps a reason that shared agency tends to go unnoticed in the debate on digital advanced directives is that it is ignoring the implications of conceptualizing of the self as relational and dependent on a community of people, rather than wholly autonomous and individualistic. This is again a dominant idea in the film illustrated by the protagonist Ramón’s reasoning to die as both a rejection of his disabled state and a desire to return to an idealized wholeness, which he posits as more authentic by explicitly stating that life in his current state is not dignified nor worth living.

A different vocabulary and imaginary are needed than the one represented in The Sea Inside and the more recent debate on digital advance directives. How can we visualize the ambivalence that is often associated with such decision-making processes? How can we portray the anxieties and vulnerabilities? How can we make room for contingency? Only if we try to take up such questions in our movie scripts and moral deliberations may we become better able to build a (visual) language that reflects the challenges and tensions of real life.