Publication

New understandings of patients and carers as people - an ethical imperative

Maeckelberghe, E., 6-Oct-2015, EJPH. Oxford University Press

Research output: Chapter in Book/Report/Conference proceedingConference contributionAcademicpeer-review

As the numbers of older persons (and with managed chronic diseases) increases rapidly, so will the number of people involved in caring, as the case of Mary illustrates. This is both a threat and a challenge to understanding and upholding the generally accepted ethical principle of respect for autonomy of patients. I will argue that we need to broaden the traditional ethical framework in addressing the connectivity between patients and their carers.

We first need a new understanding of what it means to be elderly and dependent. Vulnerability is often understood as an inescapable dimension of life, but its meaning in healthcare is unclear. In gerontology, the concept of frailty is used. The degree of frailty reflects overall functional capacity, which is dependent on many factors, including social and psychological functioning and thus ‘self-management capabilities'. We will discuss the meaning of autonomy in the context of frailty, vulnerability and care dependency in elderly persons. In what way is Mary frail, vulnerable, dependent?

Secondly, we need to understand the position of informal carers (Mary's stepson, niece, neigbours) who are partners in the (virtual) support team. These carers can be described as ‘dependency workers' (Kittay 1999) - they support someone who is dependent upon them, but this dependency in turn makes them vulnerable, and thus in need of ‘care for the carer'. Formal agencies, and related records, need to develop ways of identifying the needs of these ‘dependency workers' for respect and support. We need to remedy for the fact that informal carers are not only a resource and a team member but also persons with consequent needs and rights in their own respect. We will need to assess the accumulation of responsibilities many informal carers face (Mary's neighbours keeping an eye on her and at the same time caring for their own partner).

Kittay EF (1999) Love's Labor - Essays on Women, Equality, and Dependency. New York, Routledge.
Original languageEnglish
Title of host publicationEJPH
PublisherOxford University Press
Publication statusPublished - 6-Oct-2015

ID: 25211659