‘Is this it?’ The lived experience of older adults with a wish to die who are not severely ill

On 24 February, Vera van den Berg defended her PhD entitled Is this it? The lived experience of older adults with a wish to die who are not severely ill at the University of Humanistic Studies.

The thesis is about older people who are not seriously ill but see no future for themselves. In the Dutch debate, this is also referred to as the “completed life” issue. This revolves around the question of whether older people who feel that their lives are complete and therefore wish to die should be helped in their wish to die, for example through euthanasia. Philosophical concepts such as autonomy and self-determination often take centre stage in the debate, but we knew less about the lived experiences of the people who are actually affected.

Perspective

In 2020, Van den Berg was part of the so called ‘Perspective’ research team, which, led by the University of Humanistic Studies and in collaboration with UMC Utrecht, conducted research into this group of people, with funding from ZonMW and on behalf of the Ministry of Health, Welfare and Sport. Her contribution to this research is one of the sub-studies of the doctoral thesis. The doctoral research consists of a total of five sub-studies and resulted in four internationally published articles. Together, they comprise an overview of the existing literature, an in-depth and longitudinal study that tracked the development of the desire for death over time, and a further exploration of the motives of older people who wish to undergo euthanasia.

The loss of zest for life was reflected in various themes:

• Everyday loneliness
  Many older people lived alone. Despite having a social network, it was mainly the inability to share moments in everyday life that weighed heavily on them.
• Search for meaning
  They were looking for meaningful connections; it was precisely in moments of rest and standstill that the loss of zest for life was experienced.
• Accumulation of losses and fear of the future
  A shrinking world opened the door to fear of the future. The idea of an uncertain and undesirable future also contributed to the feeling of “it’s not worth it anymore”.
• For many, the idea of not waking up anymore was a thought that arose, an expression of the ideal death.

Hesitant

Vera van den Berg: “Participants spoke about their experiences in vague terms, using diminutive words and with many question marks. Their tone was rarely assertive or outspoken, but rather resigned, searching, hesitant and questioning. Although all participants identified with the definition of a completed life and an associated desire to die prior to the interview, none of them had a desire to die at the time of the interview.” The conclusion of the thesis is therefore to be cautious in developing new legislation for this group of elderly people.