Persons with profound intellectual and multiple disabilities cannot speak about their Quality of Life, which makes it necessary to involve others. In current approaches, these ‘others’ are seen as assessors trying to describe QoL as objectively as possible, which involves a reduction of their experiences, through which they develop knowledge on the QoL of the person with PIMD. The objective of this paper is to give caregivers’ knowledge on the QoL of a person with PIMD a theoretical basis that values (...) these experiences. We will argue that caregivers should be seen as witnesses, not assessors, and their statements on QoL as testimonies, not assessments. Audiences judge the trustworthiness of these witnesses intersubjectively, which implies a relationship characterized by trust and suspicion. Trust supports the witness to tell in her own words about the QoL of the person with PIMD; it demands receptivity, indicating that both the witness and the audience are willing to reconsider their perspective on QoL. Suspicion is necessary too, which helps the witness to critically approach her own interpretations and supports her to create more trustworthy testimonies. We conclude that the concept of witnessing helps to acknowledge caregivers’ experiential knowledge of QoL of a person with PIMD, which may also apply to other persons who cannot speak about their own QoL. We hope that our study will empower caregivers to give testimonies on QoL of a person with PIMD, which is crucial when complex decisions about the life of this person have to be made. (shrink)

Bioethics case reports generally treat aspects of moral fathomability, characterised and addressed in different ways. This paper reads the case as a textual model of scenarios and draws attention to its structure, narrative shape, linguistic register, and the effects of tone and temporality on reader expectation and responsiveness. Such textual elements of case composition reflect authorial purpose and influence the interpretation, including moral and ethical interpretation, of bioethics cases.

Medical Humanities the journal started life in 2000 as a special edition of the JME. However, the intellectual taproots of the medical humanities as a field of enquiry can be traced to two developments: calls made in the 1920s for the development of multidisciplinary perspectives on the sciences that shed historical light on their assumptions, methods and practices; refusals to assimilate all medical phenomena to a biomedical worldview. Medical humanities the term stems from a desire to situate the significance of (...) medicine as a product of culture. But despite growing usage over half a century the term defies a unifying encapsulation and continues to conjure up a multitude of discourse communities, including scholars working at the interfaces of health and humanities, arts and health, and medical education and bioethics. The field is intellectually capacious and polymorphous, forming and reforming around critical new research questions and teaching tasks spanning disciplines. (shrink)