Hoda Hosseiny

In my PhD project, I critically examined the concepts of patient autonomy and ‘will and preferences’ in the context of treatment refusal or withdrawal under Article 12 of the CRPD. I challenged the assumption that autonomy can be protected simply by giving legal effect to patients’ expressed will and preferences without considering their genuineness. I argued for the temporary restriction of liberty, proposing that meaningful decisional support be provided to ensure that patients are supported in making decisions aligned with their genuine will. I suggested that genuine will should be understood in light of the patient's genuine self or identity. To this end, I proposed a two-step approach: first, the support person(s), in collaboration with the patient, should help determine the patient’s genuine will; second, the support person(s) should assist the patient in developing that will.

In addressing the first step, I engaged with theories of authenticity and the narrative view of identity to assess their suitability in connecting genuine will with genuine self-expression. I developed a relational view of the genuine self and identity, recognising the significant role of social relations in shaping them. In particular, I drew on Marya Schechtman’s narrative self-constitution theory, which emphasises the importance of life stories in identity formation.

In the second step, I engaged with ethics of care, compassion, and the alleviation of suffering and highlighted the importance of genuine dialogue in developing the patient’s genuine will. I showed that even in cases where a patient’s impairment is central to their identity and genuine will, care and compassion are vital in helping the patient develop their self and identity beyond the experience of impairment. I explored how narratives shaped through patients’ social interactions - especially when informed by care and compassion - play a crucial role in their self-perception, the stories they tell themselves about their experiences, and the development of their identity.

The findings of my thesis have certain implications for how we understand and reformulate the concept of free and informed consent. I argued that consent should not be seen as a one-time act of agreeing or refusing, but as a collaborative process. This approach also moves away from an individualistic notion of voluntariness, which often treats external influences as threats, and instead highlights the value of caring and compassionate social relations in enabling patients to give free and informed consent.  When genuine will, genuine self, and autonomy are understood through a relational lens, I argued that involving others in decision-making does not undermine autonomy - rather, it enables it.