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.

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 is 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 show 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 demonstrates 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.

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

READY TO GIVE UP ON LIFE: A study into the lived experience of older people who consider their lives to be completed and no longer worth living.

“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 SENSE OF BEING TORN: 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.

Liz-Rusby-magnolia-voltooidlevenonderzoekpuntnl