BACKGROUND: Documentation of older people's end-of-life care should cover the care given and provide an overview of their entire situation. Older people approaching the end of life often have complex symptoms, live with bodily losses, and face an unknown future in which existential aspects come to the forefront. Knowledge of the existential aspects recorded in palliative care documentation is sparse and merits improvement. This knowledge is relevant to the development of more holistic documentation and is necessary in order to promote reflection on and discussion of documentation of the sensitive existential considerations arising in palliative care. The aim of this study was to describe the documentation of existential aspects in the patient records of older people receiving specialized palliative care.

METHODS: Data were obtained from a retrospective review of the free-text notes in 84 records of randomly selected patients aged ≥75 years enrolled in specialized palliative care units who died in 2017. The notes were analysed using an inductive qualitative content analysis.

RESULTS: The notes documented existential aspects in terms of connotations of well-being and ill-being. Documented existential aspects were related to the patients' autonomy concerning loss of freedom and self-determination, social connectedness concerning loneliness and communion, emotional state concerning anxiety and inner peace, and state of being concerning despair and hope. The notes on existential aspects were, however, not recorded in a structured way and no care plans related to existential aspects were found.

CONCLUSIONS: Existential aspects concerning both ill-being and well-being were sparsely and unsystematically documented in older people's patient records, but when notes were extracted from these records and analysed, patterns became evident. Existential aspects form an important basis for delivering person-centred palliative care. There is a need to develop structured documentation concerning existential aspects; otherwise, patients' thoughts and concerns may remain unknown to healthcare professionals.

Background: Palliative care focuses on identifying, from a holistic perspective, the needs of those experiencing problems associated with life-threatening illnesses. As older people approach the end of their lives, they can experience a complex series of problems that health-care professionals must identify and document in their patients’ records. Documentation is thus important for ensuring high-quality patient care. Previous studies of documentation in older people’s patient records performed in various care contexts have shown that such documentation almost exclusively concerns physical problems. This study explores, in the context of Swedish specialised palliative care, the content of documentation in older people’s patient records, focusing on documented problems, wishes, aspects of wellbeing, use of assessment tools, interventions, and documentation associated with the person’s death.

Methods: A retrospective review based on randomly selected records (n = 92) of older people receiving specialised palliative care, at home or in a palliative in-patient ward, who died in 2017. A review template was developed based on the literature and on a review of sampled records of patients who died the preceding year. The template was checked for inter-rater agreement and used to code all clinical notes in the patients’ records. Data were processed using descriptive statistics.

Results: The most common clinical notes in older people’s patient records concerned interventions (n = 16,031, 71%), mostly related to pharmacological interventions (n = 4318, 27%). The second most common clinical notes concerned problems (n = 2804, 12%), pain being the most frequent, followed by circulatory, nutrition, and anxiety problems. Clinical notes concerning people’s wishes and wellbeing-related details were documented, but not frequently. Symptom assessment tools, except for pain assessments, were rarely used. More people who received care in palliative in-patient wards died alone than did people who received care in their own homes.

Conclusions: Identifying and documenting the complexity of problems in a more structured and planned way could be a method for implementing a more holistic approach to end-of-life care. Using patient-reported outcome measures capturing more than one symptom or problem, and a systematic documentation structure would help in identifying unmet needs and developing holistic documentation of end-of-life care.

The overall aim of this thesis was to illuminate the meanings of existential loneliness(EL) and describe how it was eased, as narrated by frail older people, as well as toexamine existential aspects documented in patient records in specialised palliative care.Two of the constituent studies of this thesis were qualitative with an explorative anddescriptive design (i.e., studies I and II), and two studies were based on a retrospectivepatient record review, of which one was quantitative with an exploratory design (StudyIII) and the other was qualitative with a descriptive design (Study IV). The datacollection for studies I and II was based on individual interviews with frail older people75 or more years old. Studies III and IV were based on a randomly selected sample ofpatient records of frail older people who died in specialised palliative care during 2017.The data were collected using a pilot-tested review template to identify aspects of thedocumentation relating to the aims of the studies.The findings of Study I indicated that EL was a negative experience. Four themeswere identified related to meanings of EL: being trapped in a frail and deterioratingbody, being met with indifference, having nobody to share life with, and lacking purposeand meaning. The first theme was considered an overarching theme due to its closeinterrelatedness with the other three themes. The comprehensive understanding of ELamong frail older people was ‘being disconnected from life’, an experience of at leastmomentary abandonment, being left to one’s fate, and living a meaningless life. Study IIshowed that existential loneliness was eased when being acknowledged by others, beingthe focus of others’ concern, encountering intimacy, and having meaningful exchangesof thoughts and feelings. It was further eased when the participants could bracketnegative thoughts and feelings, that is, when they could adjust and accept the presentsituation, view life in the ‘rear-view mirror’, be in contact with spiritual dimensions, andwithdraw and distract themselves. Existential loneliness could be either in the forefront(i.e., feelings of ill-being) (Study I) or in the background (i.e., feelings of well-being)(Study II). The findings of Study III indicated that performed interventions were the14most common subject of documented clinical notes, mostly related to pharmacologicalinterventions. Pain was the most common documented problem, followed by circulatoryproblems, nutrition problems, and anxiety. Clinical notes concerning wishes and wellbeing-related details were documented, but not frequently. Overall symptom assessmenttools, especially multi-dimensional tools, were used to a small extent. More people whoreceived care in palliative in-patient wards died alone than did people who received carein their own homes. Study IV was based on notes extracted from 84 patient records.The results indicated that documented existential aspects had both negative and positiveconnotations and were related to the patients’ loss of freedom and self-determination,loneliness and community, anxiety and inner peace, and despair and hope. The notesconcerning existential aspects were, however, not recorded in a structured way and nocare plans relating to existential aspects were found.According to the studies, both ill-being and well-being were evident, and the livedbody occupied a central position in all studies. The frail body increased the patients’vulnerability and limited their living space. Meaningful activities and meaningfulcommunity and exchange with others eased the existential loneliness. Existentialloneliness remains invisible to others as long as nobody talks about it, and it remainsinvisible in the documentation as long as it is not documented in a structured way.This thesis demonstrates the importance of making existential loneliness and existentialaspects visible in encounters with frail older people and in the clinical documentation.

AIMS AND OBJECTIVES: The aim of this study was to describe how EL was eased, as narrated by frail older people. BACKGROUND: Existential loneliness (EL) is an unavoidable part of the human condition. It is a complex phenomenon that has been described as disconnection from life. If EL is acknowledged in the care of older people, the experience of EL can be reduced. DESIGN: In this qualitative study, we used an exploratory and descriptive design. METHODS: The study was based on 22 narrative interviews with frail older people, 76 to 101 years old, who were receiving long-term care and services. We analysed the data using conventional content analysis. RESULTS: Being acknowledged by others, that is, being the focus of others' concern, eased the experience of EL, as did encountering intimacy and having meaningful exchanges of thoughts and feelings. Further, EL was pushed into the background and eased when participants could bracket negative thoughts and feelings, that is, when they could adjust and accept the present situation, view life in the rear-view mirror, be in contact with spiritual dimensions and withdraw and distract themselves. CONCLUSION: Existential loneliness can be eased by experiencing meaningful togetherness with others and oneself when something else comes to the forefront, pushing EL to the background. Frail older peoples' opportunities to ease EL may be facilitated by health care staff (HCS) providing person-centred care and create possibilities for solitary time and meaningful togetherness. IMPLICATIONS FOR PRACTICE: If frail older people's ongoing processes of adjusting and accepting their situation are understood and confirmed by people in their environment, for example, by nurses, family and friends, the experience of living a meaningful life can be supported, which, in turn, can ease EL.

Objectives: This study illuminated the meanings of existential loneliness (EL) as narrated by frail older people. Method: Data were collected through individual narrative interviews with 23 people 76–101 years old receiving long-term care and services. A phenomenological hermeneutical analysis was performed, including a naive reading and two structural analyses as a basis for a comprehensive understanding of EL. Result: Four themes were identified related to meanings of EL: (1) being trapped in a frail and deteriorating body; (2) being met with indifference; (3) having nobody to share life with; and (4) lacking purpose and meaning. These intertwined themes were synthesized into a comprehensive understanding of EL as ‘being disconnected from life’. Conclusion: Illness and physical limitation affects access to the world. When being met with indifference and being unable to share one’s thoughts and experiences of life with others, a sense of worthlessness is reinforced, triggering an experience of meaninglessness and EL, i.e. disconnection from life. It is urgent to develop support strategies that can be used by health care professionals to address older people in vulnerable situations, thereby facilitating connectedness.