Research projects

Building on my pioneering work into the experiences of ‘completed life’, in my current work I focus on death and dying in old age with a specific interest for and the role of choice and control at the end-of-life. Other research interests include: tiredness of life, dementia, experiences of suffering, meaning and meaninglessness at the end-of-life. 

Below, I map out some of my main research projects, conducted by myself and my team:

Unravelling the role of choice regarding death and dying in old age
Our attitude towards death is undergoing a fascinating change. A growing group of older people is determined to exercise choice and control over the time and manner of dying, resulting in a new awareness of death. By combining philosophical and empirical investigations, in my VENI-project I have explored the impact of the growing emphasis on choice regarding death upon how we live towards the end of life. Also I aim to unravel the socio-cultural and relational dynamics related to such choices.

To achieve this aim, my project is divided into three interrelated subprojects:
1. Drawing on the work of Paul Ricoeur and Charles Taylor, I formulate a philosophical account of choice that focusses on its socio-cultural and relational embeddedness, including an analysis of the relation between choice and social imaginaries (understood as shared notions and images of a certain socio-cultural group, involving moral claims about basic values of society).
2. Through discourse analysis of journalistic content I empirically analyse social imaginaries of ‘death in old age’. Furthermore, adopting a longitudinal empirical-phenomenological approach I explore the lived experience of choice-making processes regarding death and dying, by interviewing older people and their relatives, trying to capture the temporal and contextualised nature of such processes.
3. Finally, combining the empirical findings (subproject-2) with the philosophical insights (subproject-1) I analyse the underlying moral experience.

This results in a new ethical theory, aiming to refine our moral discernment regarding the complexity of the choice-making processes in question, and provide new views and vocabulary.
Substudy of a big international project: “The meanings of dementia: interpreting cultural
narratives of aging societies” lead by the Hastings Center, Garrison/New York
For this study I conducted empirical-philosophical investigations into meaningful interactions with and among people with advanced dementia. I analysed ethnograpic data, that I gathered in a closed nursing home ward, through the lens of the philosophical work of Bernhard Waldenfels. The work will be published in a international essay-bundle of the Hastings Center, supported by the National Endowment for the Humanities.
In 2022 I gained a Hypatia-Grant which enabled me to set up my own research group at Radboudumc. The so-called Hypatia-project consists of three main sub-projects: 

  1. Meaningful interactions regarding end-of-life decisions in older persons
    With this PhD project, we aim to investigate interactions between older persons with multimorbidity, their close ones and healthcare providers regarding (end-of-life) choices in a longitudinal, multi-perspectivistic qualitative study. For this, my PhD-candidate Thessa Thölking intensively follows around 10 patient journeys over a period of 6 months. These patients are observed during their interactions with different healthcare providers. This is combined with performing regular interviews with these patients, their relatives and healthcare providers, and with document analysis. Overall, we aim to gain insight in how older persons with multimorbidity navigate the (health)care system and to what extent (they feel) they can make choices.
  2. The meanings of death and dying in the hospital
    In this ethnographic study, my team member Carolien van Leussen investigates the meanings of death and dying in late life in hospital contexts. By means of long-lasting observations in several hospital departments and (in)formal interviews with involved professionals, we aim to unfold and understand (1) how dying and death are managed, (2) what actors play part, and (3) which meanings and values are enacted in these healthcare practices. This should lead to in-depth insight into the complexities that accompany contemporary dying trajectories in hospitals, and provide insight in how to further improve these.
  3. The meanings of suffering in euthanasia trajectories
    In this longitudinal, multi-perspective qualitative study, Marte Fleur Antonides (PhD-candidate) and Dominique Girard (Postdoctoral researcher) investigate the role and the meaning of suffering in Dutch euthanasia trajectories. For this, they follow the assessment trajectories of patients who request for euthanasia. Observations of interactions between physicians, nurses, patients and close ones are complemented by serial interviews. This way, we aim to get insight in how the meaning of suffering may vary for the people involved, as well as how the suffering evolves over time. This project is funded by the Hypatia grant, as well as a postdoctoral grant of Fonds de recherche du Québec – Société et Culture (FRQSC).

THE EYES OF OTHERS ARE WHAT REALLY MATTER: A study into the experience living with dementia from an insider perspective.

The aim of this study was to contribute to our understanding of the day-to-day experiences by providing an idiographic description of what it means existentially to be in the world as a person affected by a form of dementia, taking into account the contextual nature of these embodied experiences.

Our findings have shown that living with dementia–from a first-person perspective–can be understood as a severely unsettling experience: the people concerned enter a very uncertain, unpredictable and ambiguous period of life. They have to face all kinds of losses that considerably change and disrupt their relationships with 1) their own body, 2) with others and 3) with the surrounding world.

Our study has demonstrated how the people with dementia are affected by ‘the eyes of others’. They longed for a safe and accepting environment, but quite often felt scrutinized by inquisitive and disapproving looks. The outcomes also reveal a connection between dominant social imaginaries and people’s self-understanding of dementia. Much of the suffering stems from living under the shadow of negative imaginaries.
A study into the lived experience of older people who consider their lives to be completed

“My life is over. I’m done with it.”
“It is like the end of a curve, a vacuum… it’s not my world anymore.”

The aim of my PHD-study – which I finished in 2016 – was to develop an in-depth understanding of the phenomenon ‘life is completed and no longer worth living’, as it is lived and experienced by elderly people who do not suffer from a life-threatening disease or a psychiatric disorder. This was done from a phenomenological approach to explore this experience with an open, non-judging and wondering attitude.

My research has shown that the essence of the phenomenon can be understood as ‘a tangle of inability and unwillingness to connect to one’s actual life’, characterized by a permanently lived tension: daily experiences seem incompatible with people’s expectations of life and their idea of who they are. While feeling more and more disconnected to life, a yearning desire to end life is strengthened. The experience is further explicated in its five constituents.

  1. The first constituent is a profound sense of existential loneliness; older people feel separated from others. While in some cases they still have contacts, those contacts are being seen increasingly sporadically and do not compensate lonely feelings anymore. Despite people being around, they feel a lack of reciprocity and support.
  2. The second constituent is the pain of not mattering; older people feel sidetracked. They view themselves as dispensable, redundant and not important to people or society.
  3. The third constituent is the growing inability to express oneself; they are no longer able to carry out the activities they were committed to in life. The loss of these identifying activities means a loss of the self.
  4. The fourth constituent is existential and physical fatigue; some are tired because of physical age-related problems, but in many cases there is also an experience of existential weariness and boredom. People feel old and full of days.
  5. The fifth constituent is a sense of aversion to feared dependence; this refers to the fear of losing control and the uncertainty as to whether others will guard your interests if you are dependent on them. Most participants expressed a deep shame and disgust of their own deteriorating bodies.

A notable finding of this study is that the phenomenon under research appears to have clear socio-positional grounds; feelings of social exclusion and uselessness play an important role in developing a wish to die.

Download the full version of this study (in PDF) here.
A study into the experience of those living with the intention to end their lives on a self-chosen moment

It’s a problem that is constantly in my mind. And there is no solution. (…)
It lingers, it is constantly in your head as something insoluble.

Besides our study shows what it means to live with the intention to end life at a self-chosen moment. The liminality or ‘in-betweenness’ of intending and actually performing a self-directed death (or not) is characterized by ambivalent feelings of being torn, expressed in words like: ‘dilemma’, ‘doubt’, ‘a difficult balancing act’, and ‘a split position’.

This paradoxical position is explicated in the following themes: 1) detachment and attachment; 2) rational and non-rational considerations; 3) taking control and lingering uncertainty; 4) resisting interference and longing for support; 5) legitimacy and illegitimacy.

Our study nuances earlier research into so-called rational suicides. It introduces empirical evidence to the largely theoretical debate on rational suicide. The period between intending and doing does not show itself as a coherent, calculating process of cognitive-rational judgment. Rather, it appears to be a major existential challenge in which people are caught between opposites within themselves. The findings clearly highlight the need for due consideration of all ambiguities and ambivalences present after a putatively rational decision has been made, in order to develop a careful policy and support for this particular group of older people.

Download the full version of this study (in PDF) here.