Why we need narratives about suffering in old age

Narratives elderly

There is a collective aversion when it comes to facing the realities of old age, or so John Harris argued in The Guardian last February. Harris is, of course, not the first to point at a widespread public revulsion of growing old, and the association with loneliness, isolation, powerlessness and uselessness. Nowadays, many of us view a longer life as a mixed blessing. We embrace the so-called vital ‘third age’, but we collectively turn our backs to the frail ‘fourth age’. I believe we should control this tendency and fully face the fourth age including its difficulties.

‘Good’ old age

It is easily understandable that people want to age as healthily, actively and independently as possible. We seek to achieve a ‘good’ old age that is characterised by personal contentment, physical health and social well-being; and these aims underpin most gerontological research. Driven by emancipatory ideals, a great deal of effort is put into counteracting stereotyping and negative framing of old age through promoting an ethos of good and successful ageing.

This somewhat one-sided emphasis on the bright side of ageing makes it more difficult to acknowledge the darker sides of growing old. It leaves us with a sense of a widening gap between the fit and the frail. As well as making it harder for us to take a realistic view of what our own old age might contain, the prospect of increasing dependency, and the decline towards decrepitude and death, it also – and this might be even worse – exacerbates the difficulties we might have in giving proper attention to older people already dealing with this condition.

Despair

A few days after reading Harris’ opinion piece, I also read an interesting article by Chris Gilleard on suffering in old age. In his article, Gilleard goes one step further by making a strong moral plea for addressing the topic of suffering much more explicitly and emphatically in society as well as in ageing studies.

It so happens that this is what (an important part of) my own research is about, namely mapping out the despair of people suffering from life in old age, and I use the word ‘despair’ here with care. By means of in-depth and longitudinal qualitative research, I have been trying to illuminate the lifeworld of those older people who consider their lives to be over and no longer worth living, and consequently ideate on a self-chosen and self-directed death.

Three reasons

My research has convinced me of the need for plain narratives about the nature of suffering in old age for at least three reasons, namely: 1) understanding, 2) recognition and 3) consolation.

First, narratives about sadness and suffering associated with age are very important for enlarging our understanding, both at a personal and societal level: What does the suffering mean for the person involved? How and to what extent is life threatened in their eyes? Andrew Sayer (2011)((Christian Smith (2015) Why Things Matter to People, Journal of Critical Realism, 12:2, 255-259, DOI: 10.1179/rea.12.2.x27354640x0r1417 )) has highlighted the importance of taking people’s concerns seriously, not merely to recognize them as private emotions, but to view them as illuminations of what is happening in our society. What needs to be taken seriously?

In his book, Sayer states: “Needs, desires, suffering and a lack of well-being indicate a state of the world and some aspects of that world that should be changed.” Personal stories should never to be reduced to (or even neglected as) ‘arbitrary, subjective experiences’, but serve as an imperative for an on-going public debate on the place and role of elderly in society.

Secondly, most of the older people with a death wish whom I interviewed over the last few years experienced an enormous loneliness around their difficulties. They often lacked a sense of recognition by others. They had the impression that their close ones (and professional carers) tended to avoid talking about their suffering, let alone about their wish to die. Instead, these individuals – with the best of intentions no doubt – tended to distract their attention by talking about fun things (i.e. nice weather or nice planned outings).

Witness

The deepest wish of my interviewees was, however, not that somebody would respond to their problems by distracting their attention or by trying to ‘solve’ their suffering – often they didn’t even believe that it was possible to solve their suffering. Rather they wished for somebody who just acknowledged their struggles and was willing to encounter their pain and sadness by listening to and connecting with their stories.

Such acknowledgement of their sadness and suffering was often experienced as deeply consoling. I fully agree with Gilleard that serving as a witness of suffering can be seen as a basic for an ethics of human dignity and a call upon social solidarity. If we want to counteract the social neglect, exclusion and/or abjection of the oldest old, we should control the tendency to turn our backs to tragic (often unsolvable) sides of the fourth age and instead pay full attention to struggles that people might experience, suppressing the impulse to immediately dissolve or intervene their pain.

Author: Dr. Els van Wijngaarden

This blog is a re-post. The original reference is: Three reasons why we need narratives about suffering in old age, The Oxford Institute of Population Ageing, 18th Apr 2018. 

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Older people on self-chosen death

Self-chosen death by elderly

Caught between intending and doing: older people ideating on a self-chosen death

Els van Wijngaarden, Carlo Leget and Anne Goossensen (( University of Humanistic Studies, Utrecht, Netherlands))

Abstract

Objectives
The aim of this paper is to provide insight into what it means to live with the intention to end life at a self-chosen moment from an insider perspective.

Setting
Participants who lived independent or semidependent throughout the Netherlands.

Participants
25 Dutch older citizens (mean age of 82 years) participated. They were ideating on a self- chosen death because they considered their lives to be no longer worth living.
Inclusion criteria were that they:

  1. considered their lives to be ‘completed’;
  2. suffered from the prospect of living on;
  3. currently wished to die;
  4. were 70 years of age or older;
  5. were not terminally ill;
  6. considered themselves to be mentally competent;
  7. considered their death wish reasonable.

Design
In this qualitative study, in-depth interviews were carried out in the participants’ everyday home environment (median lasting 1.56 h). Verbatim transcripts were analysed based on the principles of phenomenological thematic analysis.

Results
The liminality or ‘in-betweenness’ of intending and actually performing self-directed death (or not) is characterised as a constant feeling of being torn explicated by the following pairs of themes:[pullquote]”I don’t want to die, but my life is simply unliveable.” [/pullquote]

  1. detachment and attachment;
  2. rational and nonrational considerations;
  3. taking control and lingering uncertainty;
  4. resisting interference and longing for support;
  5. legitimacy and illegitimacy.

Conclusions
Our findings show that the in-between period emerges as a considerable, existential challenge with both rational and non-rational concerns and thoughts, rather than a calculative, coherent sum of rational considerations. Our study highlights the need to take due consideration of all ambiguities and ambivalences present after a putatively rational decision has been made in order to develop careful policy and support for this particular group of older people

Strengths and limitations of this study

  • This study gives voice to older people who wish to die — preferably with medical assistance —
    although they do not suffer from a lifethreatening disease or a psychiatric disorder.
  • This study is the first to elucidate what it means to live in-between intending and actually per-
    forming a self-chosen act leading to death (or not).
  • This study introduces empirical evidence into the largely theoretical debate on rational suicide.
  • Our study highlights the need for due consideration of all ambiguities and ambivalences present after a putatively rational decision has been made, in order to develop careful policy and support for this particular group of older people.
  • Although transferability to other countries is limited due to cultural differences, the Dutch discussion
    may inform the debate on (legalisation of ) assisted dying in other Western countries.

Article:

  • van Wijngaarden E, Leget C, Goossensen A. Caught between intending and doing: older people ideating on a self-chosen death. BMJ Open 2016;6:e009895. doi:10.1136/bmjopen-2015-009895

Photo credit: Simon & His Camera Life Is But A Walking Shadow – Syon Park London by Simon & His Camera via photopin (license)

Ready to give up on life

give up on life

The lived experience of elderly people who feel life is completed and no longer worth living.

Els van Wijngaarden, Carlo Leget and Anne Goossensen ((University of Humanistic Studies, Utrecht, Netherlands))

In the Netherlands, there has been much political and public debate on the question whether elderly people, who are tired of life and who consider their life to be completed, should have legal options to ask for assisted dying.
So far there has been little research into the experiences of these elderly people. In order to develop deliberate policy and care that targets this group of elderly people, it is necessary to understand their lifeworld.
The aim of the research by dr. Els van Wijngaarden is to describe the phenomenon ‘life is completed and no longer worth living’ from a lifeworld perspective, as it is lived and experienced by elderly people.

Reflective lifeworld research design

Between April to December 2013, we conducted 25 in-depth interviews. A reflective lifeworld research design, drawing on the phenomenological tradition, was used during the data gathering and data analysis.

The essential meaning of the phenomenon is 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 whom they are.[pullquote]“Deep inside, you are very much alone. Totally, totally alone”[/pullquote]

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. a sense of aching loneliness;
  2. the pain of not mattering;
  3. the inability to express oneself;
  4. multidimensional tiredness; and
  5. a sense of aversion towards feared dependence.

This article provides evocative and empathic lifeworld descriptions contributing to a deeper understanding of these elderly people and raises questions about a close association between death wishes and depression in this sample.

E. van Wijngaarden et al. / Social Science & Medicine 138 (2015) 257e264.
Doi: 10.1016/j.socscimed.2015.05.015

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