Section of Spiritual Care and Chaplaincy Studies, Department of Mediating the Good Life, Protestant Theological University, P.O. Box 11069, 9700 CB, Groningen, The Netherlands.
Section of Medical Ethics, Department of General Practice, Amsterdam University Medical Center, Amsterdam, The Netherlands.
Health Care Anal. 2021 Jun;29(2):144-153. doi: 10.1007/s10728-021-00428-y. Epub 2021 Mar 17.
Persons with profound intellectual and multiple disabilities (PIMD) cannot speak about their Quality of Life (QoL), 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.
重度智力和多重残疾者（PIMD）无法表达自己的生活质量（QoL），因此需要涉及其他人。在当前的方法中，这些“其他人”被视为评估者，试图尽可能客观地描述 QoL，这涉及到他们的经验的减少，通过这些经验，他们对 PIMD 患者的 QoL 发展了知识。本文的目的是为照顾者提供有关 PIMD 患者生活质量的知识，为他们提供一个重视这些经验的理论基础。我们将认为，照顾者应该被视为证人，而不是评估者，他们对 QoL 的陈述应该是证词，而不是评估。听众会从主体间的角度判断这些证人的可信度，这意味着一种以信任和怀疑为特征的关系。信任支持证人用自己的语言讲述 PIMD 患者的 QoL；它需要接受性，表明证人双方都愿意重新考虑他们对 QoL 的看法。怀疑也是必要的，这有助于证人批判性地对待自己的解释，并支持她创造更可信的证词。我们的结论是，见证的概念有助于承认照顾者对 PIMD 患者生活质量的经验知识，这也可能适用于其他无法表达自己生活质量的人。我们希望我们的研究能够增强照顾者对 PIMD 患者生活质量的证词，当必须对这个人的生活做出复杂的决定时，这是至关重要的。
