Tiredness of Life in Older Persons: An Evolutionary Concept Analysis

Abstract


Background
Increasing percentages of individuals will live longer periods of their life with physical and mental impairments that may impoverish their perceived sense of well-being [1,2].Consequently, older persons may long for their biographical life to coincide neatly with their biological life, in order to avoid a sense of living too long or experiencing a social death [3][4][5].In recent years, there has been a growing interest in older persons wishing to die without the presence of a life-threatening disease or a severe psychiatric disorder [6][7][8].Prior research [5,6,9] has shown that around 3% of older persons have either a current desire to die or a reduced desire to continue living.Another recent study in the Netherlands showed that 1.34% of older persons (55+) has a persistent desire to die of which 0.77% actively wishes to end their lives without having a serious underlying condition [10].The Berlin Aging Study (BASE) showed that there is a parallel increase in prevalence of tiredness of life and suicidality with increasing age [11].
Healthcare providers are in a key position to assist older individuals in their adaptation to life changes and are increasingly confronted with tiredness of life [12].Therefore, it is important for them to understand how a wish to die and tiredness of life are related to each other.However, in the eld of research about the wish to die in older people who suffer from life, there is a lack of consistency in conceptualization.This lack of clarity re ects the complexity and ambiguity of the issue at stake.A concept analysis (CA) may advance the understanding of tiredness of life, especially when the attributes or characteristics of the phenomenon are not well delineated [13].As a clear de nition and meaning of the concept is lacking on an international level, this CA aims to clarify what is currently known as tiredness of life.The analysis identi es the components of tiredness of life and may serve as a base for further conceptual development.

Method
Concept analysis (CA) aims to provide a working de nition and clari cation of the concept being analysed [14].Rodgers (2000) contends that a clearly clari ed concept may be used more effectively and its strengths and weaknesses evaluated.Variations can be introduced and tested, moving towards the development of a more useful concept, re ecting a contemporary context for its use.For this CA a review of the literature was executed and Rodgers evolutionary method of concept analysis was used.This method was chosen because of the emphasis on the fact that a concept is context dependent and dynamic.In the evolutionary view, the content of a concept is not composed of a xed set of conditions constituting an everlasting 'truth' of the concept.On the contrary, a concept is considered as a basis for further development as it evolves over time by convention or purposeful rede nition.This CA method was also chosen for its focus on the collection and analysis of raw data rather than the construction of 'cases" as is proposed in other CA approaches [15].

Data sources
A search strategy was drafted by LVH with training in geriatrics and systematic literature review methodology.After discussion with SDM and FD, a nal search strategy for all databases was agreed upon.The literature search was performed by two authors (SDM and FD).The key search concepts were 'tiredness of life' and 'older persons'.Related terms, synonyms and abbreviations of these key search concepts were used in the search strategy and combined with one of the Boolean operators 'OR' and 'AND'.A detailed search strategy used for searching publications in Pubmed is displayed in Table 1.
Publications were searched in the following databases: Pubmed, Web of Science, CINAHL and EMBASE.The Pubmed search strategy was modi ed accordingly to search the other databases.Searches were limited to Dutch, French and English language publications only and dated from January 2000 until December 2019.This timeframe was chosen to ensure that retrieved articles were recent and relevant to the current healthcare context.Hand searching of the reference lists of obtained articles to identify publications not indexed in electronic databases was performed.
All types of publications were included (e.g. research papers, position statements, opinion papers and editorials).Only publications in English and Dutch were retained.During the title/abstract screening process, all sources containing one of the synonyms of tiredness of life were retained.During the full text screening, only publications containing one or more of the following components of Rodgers' evolutionary model of CA as shown in Table 2 were retained: attributes, related concepts, surrogate terms, antecedents or consequences.References were excluded if no abstract was available.Publications on the topic without reference to care for older persons were excluded.

Data Collection, Management and Analysis
Two reviewers (SDM and FD) independently screened a random selection of titles and abstracts that represented 10% of the total number of retrieved references.A rst screening was done based on title.In case of doubt, the screening was based on the abstract.In case of disagreement between the two reviewers, a third in-dependent reviewer (LVH) decided on inclusion or exclusion.All retained publications were read at least twice by SDM and FG prior to data extraction, which allowed them to become acquainted with the data and to label data based on the major components of Rodgers' evolutionary method.The aim of data analysis in concept analysis is to identify a consensus in the literature (Rodgers, 2000).Data extraction was facilitated by the use of a self-developed data extraction sheet that contained the author(s), publication year, type of publication and the country of relevance.The data extraction sheet also consisted of the major components of Rodgers' method of concept analysis.All sections of full text articles containing relevant information were copied into the applicable categories of the data extraction sheet.Once all relevant data were identi ed, each items was read to obtain a general tone and re-read a number of times to ensure all relevant data were extracted.Questions for each category were formulate to guide the data analysis process (Table 2).Consequently, thematic analysis was performed.Central themes were identi ed separately for each data category covering a major component of the CA.

Results
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 nongeriatric 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.

De nition
In current literature just one de nition of tiredness of life could be retrieved.In this de nition 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 de nition 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 de nition, 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 uctuations 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 ' nished 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 re ect 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 speci cally 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 uid.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, speci cally 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 identi ed 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 objecti ed, 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 nancial 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 t 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.

Discussion
The purpose of this article was to review the health-related literature on tiredness of life and to identify the de ning attributes, antecedents, and consequences of the concept.Our paper reveals the current immaturity of the concept.Up to this point, we have demonstrated that tiredness of life cannot be understood without taking into account the socio-cultural context and the moral understandings as the background against which older people de ne themselves, act in relation to others and understand the world.Our results show that tiredness of life is a complex phenomenon which consists of a cluster of emotions, thought constructs and actions in which concerns for others play an important role.
Life is a call to be answered by the personal will to go on writing one's personal biography, be it a next chapter or only the epilogue [63].From our review it remains unclear whether tiredness of life is a clear "responsive refusal" to the call of life or rather the powerless incapacity, the loss of being able to respond tout court.The related wish to die might also mask a desire to live a different life.The question can only be raised here whether the dynamic interplay between call and response can possibly be reopened and revitalized in some way or another [64].This CA stresses that antecedents of tiredness of life are situated both on individual and societal level.Clearly by focussing exclusively on individual characteristics and behaviours, we risk blaming individuals for not achieving resilience in later life.So we must pay adequate attention to the broader physical and social contexts that underpin and foster individual resilience [65].
Rather, it should be put in a wider perspective and focus on the question of how to build an inclusive society, (re)establish trust, and minimize the impact of inherent vulnerabilities and situational dependencies on the lives of older people [27].This is in line with the thoughts of Tillich (2000) who described the essence of how to feel connected in terms of either taking part or being a part of, where both aspects are needed in order to feel connected in life [66].This calls for an enabling individual mindset as well as an enabling social response [67].However, this requires a process of changing internal standards and values and the reconceptualization of the concept quality of life in older persons [68].
Instead a life course perspective may broaden this conceptualization by acknowledging that diverse experiences may lead to varying interpretations of success, both individually and culturally [69].The ndings from this CA point to several areas for further research.Clearly, more work is needed to grasp the full potential of tiredness of life.Concept analysis is never an end in itself; rather, it stimulates continuous concept development [15].The development of concepts must be rooted in empirical knowledge, and new developments must be evaluated.Clinical clarity is essential as it could provide a kind of 'toolkit' to people concerned by tiredness of life.Assessment and measurement of the concept would be enhanced by the addition of qualitative measures designed to capture individualized personal constructs related to tiredness of life.Furthermore, the attributes, antecedents and consequences establish a theoretical framework that may be applied in the development of tools to assess tiredness of life.Often tiredness of life is implicit; thus, incorporating tools to assess for this phenomenon must tap for underlying presence.Future steps include further qualitative research to enhance the de nition development, possible development of an instrument to measure tiredness of life, and eventually testing of the effectiveness of nursing interventions to alleviate tiredness of life.

Limitations
As this CA is the rst analysis speci cally focusing on tiredness of life, it gives an overview and state of the art of the components identifying the concept.However some limitations need to be addressed.First, the search timeframe (e.g.2000-2019) may have limited the ability to identify more differences in how the term tiredness of life was used over time.Second, the inclusion of publications in no other languages than English, French and Dutch could have led to an incomplete analysis of tiredness of life.Third, our analysis used a principle-based analysis and didn't explore the concept by using the method of conceptualization of meaning, which involves identifying the usage of tiredness of life in a variety of media (including the popular literature) (Chinn & Kramer 2011).

Conclusion
This concept analysis was undertaken to clarify the concept of tiredness of life.Although the review uncovered one de nition and several attributes of tiredness of life such as a feeling of boredom, a loss of meaning in life, an inability and unwillingness to connect to one's life and an ongoing non-linear process, an international consensus de nition regarding tiredness of life is lacking.Future research needs to concentrate on (1) enhancing de nition development, (2) development of an instrument to measure tiredness of life, and eventually (3) [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 de ned under the Euthanasia Act[61, 62].

Table 2 .
testing the effectiveness of interventions to alleviate tiredness of life.Stowe JD, Cooney TM: Examining Rowe and Kahn's Concept of Successful Aging: Importance of Taking a Life Course Perspective.Gerontologist 2015, 55(1):43-50.Guiding Questions Used During Data Analysis Phase A, de nitions; B, antecedents; C, attributes: D, related concepts; E, surrogate terms; F, consequences Figures Figure 1 Flow Diagram of Included Publications