Contemporary debates in bioethics: Informal caregiving at the end of life

This course will explore the roles of family and friends at the end of life. There, family and friends often become informal caregivers and provide a major part of care for their loved ones who are in need of support. Informal caregiving covers a range of different care tasks, depending i.a. on the level of frailty or kind of illness, the situation at home, and employment status of informal caregivers. For example, informal caregiving for patients with Alzheimer’s disease and other dementias proves very different to care for patients with neurodegenerative diseases, such as amyotrophic lateral sclerosis.  
Not only do informal caregivers look after the patient's physical and psychological needs, they further take a key role in decision-making at the end of life. In case of the patient’s legal incompetence, they might be set up as guardians or they might be involved in the patient’s preparation of assisted suicide. Additionally, with a high burden of care they might be in need of support themselves. Furthermore, informal caregiving at the end of life does not end with the patient’s death, meaning, that bereavement is often overlooked as an essential phase in the caregiving trajectory. 
This course discusses a broad range of these ethical questions from the perspective of family and friends, as well as how to best support caregivers in critical situations, what the role of informal caregivers in advanced care planning is, or whether it is ethical to facilitate death talk among patients and their loved ones.   positions during lectures and homework. The lecture series will feature leading national and international experts in the field.

Location: Klinikum 1, Hörsaal 1, University Hospital Basel (Spitalstrasse 21)





Introduction to the topic and presentation and discussion with Martine Verwey

Christopher Poppe & Martine Verwey


Informal caregiving in specialist palliative care for amyotrophic lateral sclerosis

Dr Miriam Galvin, Dublin


flegende Angehörige zwischen Arbeitswelt und Sterbebegleitung

Prof Dr Marc-Antoine Berthod, EESP Lausanne


Self-study day



Young carers

Prof Dr Agnes Leu


The role of informal caregivers in advance care planning

Prof Dr Tanja Krones, UZH


When the Beginning is the End: Suffering of Parents Whose Extremely Preterm Baby Died in the NICU

Dr Manya Hendriks,
Uni Luzern


Handlungs- und Bewältigungsstrategien von Angehörigen in der häuslichen Palliativversorgung

Dr Christiane Kreyer, UMIT Tirol


Therapieentscheidungen durch stellvertretende Angehörige

Prof Dr Dr Ralf Jox, Uni Lausanne


Self-study day





Parents balancing life during their child’s end-of-life and beyond

Using motivational interviewing to facilitate death talk in end-of-life care

Pflegende Angehörige und Sterbefasten

Dr Karin Zimmermann

Dr Isra Black, Uni York

Prof Dr André Fringer