The search of the databases initially generated 1143 records. After duplicate removal in Endnote 642 records were screened for title and abstract. Eligibility for full text inclusion was assessed for 48 articles, of which 4 were excluded as they did not contain any information on attributes, roles, antecedents or consequences of tiredness of life. Another 6 publications were excluded due to their focus on a non-geriatric population. The reference lists of obtained articles and books were reviewed and key citations which appeared across reference lists were obtained. Finally, no full text could be retrieved of 5 publications. In total, 33 publications were included in this review (Table 3). Results of the screening and selection of publications are shown in Fig. 1.
Attributes of Tiredness of Life
Definition
In current literature just one definition of tiredness of life could be retrieved. In this definition being tired of life refers to psychological suffering caused by the prospect of having to continue living with a very poor quality of life, not predominantly caused by a physical or psychiatric disease, and closely associated with a death wish. Although the presence of suffering is crucial in the definition of tiredness of life [16, 17], older people being tired of life don’t decisively take steps to end their life [18, 19]. Besides a definition, a number of terms emerged from the literature as attributes of tiredness of life. Each will be discussed below.
Attributes
First, tiredness of life is characterized by the idea of ‘being weary of life’ as a feeling of boredom and a lack of meaningful daytime activities [20]. Older persons feel physically and mentally fatigued and are no longer able to give resistance at all. The second attribute that has been consistently referred to is the loss of meaning in life [5, 21]. Older persons attest of having no reason for existence as well as have the feeling of not pursuing worthwhile goals and having no mission or a sense of direction in life. Third, authors refer to an inability and unwillingness to connect to one’s life [22] as feelings of extreme social disconnection or isolation under the heading of thwarted belonginess [23]. Fourth, scholars refer to tiredness of life as a an ongoing non-linear process containing fluctuations in well-being, health, autonomy and relatedness [24].
Surrogate Terms
Rodgers (2000) describes surrogate terms as other words or phrases which are used interchangeably to describe the concept being examined. Concepts such as ‘finished with life’, ‘completed life’, ‘existential suffering from disconnectedness in old age’ and ‘suffering from life’ are used interchangeably both in the public debate and among physicians and patients. The main difference between these terms concerns the presence of a death wish in varying degrees (e.g. persistent, passive or active). Finished with life refers to ‘the situation of people, usually of an advanced age but not suffering from any medical disease or condition that is untreatable or a cause of severe suffering, who have determined for themselves that their own quality of life has diminished to such an extent that they prefer death over life’ [25].The term completed life is used to describe the situation of an older person who considers his or her life completed and, instead of waiting for a natural death, desires to conclude it [18, 26]. Completed life refers to an existential suffering as a consequence of a negative conditional determination of the current quality of life. This concept emphasizes that a person prefers death over life without prevailing suffering. The suggestion of some scholars that suffering can only emerge when life is ‘completed’ does not accurately reflect the complex issue of older persons who are suffering from life. A ‘completed life’ refers to people who go a step further: rather than waiting for a natural death, they decide to end life by active means (with or without help)’.The phenomenon is further understood as: ”a tangle of inability and unwillingness to connect to one’s life” [6]. A permanent tension is experienced as daily experiences seem to be incompatible with a person’s expectations of life and their idea of whom they are. Existential suffering from disconnectedness in old age specifically refers to older persons who are no longer able or unwilling to connect to life resulting in an experience of life as no longer worth living without evidence of severe physical and mental disease. In this description older persons feel separated from others and view themselves as not mattering [27]. Suffering from life is referred to as fundamental in tiredness of life across much of the literature “suffering under the prospect of having to continue life at a profound diminished level of quality, which results in persistently recurring longing for death, without being able to determine a somatic or psychological reason” Suffering of this type can result from the feeling that life is ‘complete’, but it may also have other causes [25]. It refers to the personally experienced threat, not excluding physical, emotional, existential or even social suffering. The concept “suffering from life” is not age-related [25].
Related Concepts
Related concepts are “concepts that bear some relationship to the concept of interest but do not seem to share the same set of attributes” (Rodgers, 2000; p.92). Examples of such concepts are: wish to hasten death, existential loneliness, demoralization and balance sheet suicide.
A Wish to Hasten Death (WTHD)
This wish occurs as a reaction to suffering in the context of a life-threatening physical condition from which the patients sees no way out than accelerating the dying process [28]. However, others also use this term not restricted to terminally ill persons who hasten their death by voluntary refusal of food and fluid. This wish to hasten death is a response to physical/psychological/spiritual suffering, loss of self, fear of dying, the desire to live but not in this way (i.e. a sort of cry for help). The experience of a WTHD is associated with a sense of time running out. The fear of causing loved ones to suffer and the expectation of a future in which they would be a burden to others were primary motives for wanting to end their lives, even in patients who were not suffering at that particular moment in time [29]. WTHD is seen as a way of ending suffering, as a kind of control over one’s life (the sense of control comes from having a hypothetical exit plan [30, 31] and a way of ending the loss of self and dignity [32]. This wish may vary in intensity in time [32].
Existential Loneliness
Existential loneliness can be understood as ‘the immediate awareness of being fundamentally separated from other people and from the universe, primarily through experiencing oneself as mortal, or, and especially when in a crisis, experiencing not being met at a deep human (i.e. authentic” level” [33, 34]. Frail older persons have described existential loneliness as being related to feeling trapped in a frail and deteriorating body, being met with indifference, having nobody to share life with and lacking purpose and meaning [35, 36].
Demoralization
Demoralization is a syndrome of existential distress occurring in patients suffering from mental or physical illness, specifically ones that threaten life or integrity of being. Demoralization is a clinical state of low morale and triggered by poor coping with impending death, characterized by hopelessness, helplessness, loss of purpose, feelings of entrapment, and potential desire to suicide [37]. Studies show a prevalence of 15% among oncology patients, rising to 30% in palliative care [38, 39]. It occurs in the context of a severe threat that causes marked anxiety, in which the person does not know the solution. Demoralization boils down to a perception of a loss of direction, role or sense of purpose leading to feelings of pointlessness [40]. In 14% of patients demoralization occurs in the absence of an affective, anxiety or adjustment disorder and may contribute to an increased risk for suicidal ideation beyond the effect of mental disorders [41].
Balance Sheet Suicide or Rational Suicide
As one ages, the negative points accumulate to such an extent that death becomes preferable to life [42, 43]. In this context, the suicidal act is seen as a logical outcome of a balance sheet. In the past this type of suicide was described as an “enduring wish to die in a person with a condition of enduring unbearable physical and/or emotional pain, no hope for improvement. The person, who is not mentally disturbed, makes a free will decision which would not cause “unnecessary or preventable harm” to others.” [44].
Antecedents
The antecedents of a concept are those events that generally occur before occurrence of the concept (Rodgers, 1989). A number of antecedents, which must be in place in order for tiredness of life to occur, were identified in the literature. These antecedents are situated on an individual and societal level with a mutual reinforcing effect [16, 20, 45].
On individual level, tiredness of life is initiated by an older person’s impossibility to deal with experienced age-related losses (physical deterioration, loss of function, incontinence, cognitive impairment, among others) [46]. The loss of bodily control may comprise a wish to die if one feels objectified, perceiving a loss of ‘self’ [47]. Others state that tiredness of life is underpinned by a lack of meaningful daytime activities initiating a feeling of boredom. For some older persons not being able to do the things that brought meaning and value to their life may be a reason to wish for its end [5]. Becoming increasingly dependent gives older persons a sense of no longer belonging to “the world of agency and choice” [48]. Often older persons feel frustrated and guilty about being an emotional/physical or financial burden for their family members and/or healthcare providers. Tiredness of life can thus represent a desire to spare others from suffering [49]. A recurring theme is the fear of dependency on others, not being able to be useful anymore (i.e. social redundancy), not experiencing a level of reciprocity and losing control over their life [20, 36]. Overall, this is connected to an older person’s coping style and life orientation [50]. The realization that there is a great discrepancy between the desired situation and the actual situation - in addition combined with an experienced loss of control to achieve the desired situation – may lead to tiredness of life.
On societal level, perceptions of old age or physical decline shape the way we see ourselves, and may lead to deep suffering [51]. It seems that the idea that life is no longer worth living is partly constituted by a societal idea that old-age dependencies compromise one’s autonomy and dignity (van Wijngaarden et al., 2015a). Currently, an abjection of frailty exists that lends itself to the process of othering resulting in a failure to acknowledge the subjective agency of an older person [52]. The concept tiredness of life challenges the current discourse of successful and positive aging [53, 54] as a process of continuous adjustment to new – restricting – circumstances [55].
Consequences of Tiredness of Life
The loss of meaning and existential suffering accompanying tiredness of life may, but not necessarily, evolve to a pertinent death wish (Barnow & Linden, 1996; Dewey, Davidson & Copeland, 1993; Linden & Barnow, 1997). Most older adults keep living their lives with their death wish in compliance with their faith or because a self-willed end simply does not fit their personality. Others decide to continue living as they place greater weight upon a natural course of the dying process [24]. For some, voluntary stopping of eating and drinking (VSED) is described as a method to control the timing and circumstances of their death [56]. For a minority, the feelings of hopelessness and despair may progress to suicidal ideation, suicide plans, attempts and ultimately completion of the act [8, 57]. Finally, some older persons actively take steps towards ending one’s life or to a formal euthanasia request as a right of self-determination [22, 24]. The most pronounced increase in euthanasia requests is in those 80 years or older and residing in nursing homes (2.0% to 4.6% between 2007 and 2013). Being tired of life is in 25.3% of euthanasia deaths the most important rationale. [58]. These developments show a change in society in the direction of more self-empowerment and even towards a right to die [26, 59, 60]. Current debate revolves around seeing old-age vulnerability and the accumulation of comorbidities as the result of compounded medical and non-medical problems as unbearable and incurable suffering as defined under the Euthanasia Act [61, 62].