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Existential aspects documented in older people's patient records in the context of specialized palliative care: a retrospective review
Malmö University, Faculty of Health and Society (HS), Department of Care Science (VV). The Research Platform for Collaboration for Health, Faculty of Health Sciences, Kristianstad University, Kristianstad, Sweden.ORCID iD: 0000-0002-9362-7464
The Institute for Palliative Care, Lund University and Region Skane, Lund, Sweden; Department of Health Sciences, Faculty of Medicine, Lund University, Lund, Sweden.
The Research Platform for Collaboration for Health, Faculty of Health Sciences, Kristianstad University, Kristianstad, Sweden.
The Research Platform for Collaboration for Health, Faculty of Health Sciences, Kristianstad University, Kristianstad, Sweden; The Institute for Palliative Care, Lund University and Region Skane, Lund, Sweden; Department of Clinical Sciences, Faculty of Medicine, Lund University, Lund, Sweden.
2022 (English)In: BMC Health Services Research, E-ISSN 1472-6963, Vol. 22, no 1, article id 1356Article, review/survey (Refereed) Published
Abstract [en]

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.

Place, publisher, year, edition, pages
BioMed Central (BMC), 2022. Vol. 22, no 1, article id 1356
Keywords [en]
Documentation, End of life, Existential aspects, Frail elderly, Palliative care
National Category
Nursing
Identifiers
URN: urn:nbn:se:mau:diva-56268DOI: 10.1186/s12913-022-08753-1ISI: 000884735700003PubMedID: 36384554Scopus ID: 2-s2.0-85141970935OAI: oai:DiVA.org:mau-56268DiVA, id: diva2:1714218
Available from: 2022-11-29 Created: 2022-11-29 Last updated: 2024-02-05Bibliographically approved
In thesis
1. Existentiell ensamhet hos sköra äldre personer: äldre personers upplevelser samt dokumentation i patientjournalen
Open this publication in new window or tab >>Existentiell ensamhet hos sköra äldre personer: äldre personers upplevelser samt dokumentation i patientjournalen
2020 (Swedish)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

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.

Place, publisher, year, edition, pages
Malmö: Malmö universitet, 2020. p. 108
Series
Malmö University Health and Society Dissertations, ISSN 1653-5383 ; 2020:5
Keywords
Existential loneliness, Frail older people, Palliative care, Experiences, Encounter, Existential aspects, Meaning, Interview, Retrospective record review, Documentation, Ill-being, Well-being
National Category
Medical and Health Sciences
Research subject
Care science
Identifiers
urn:nbn:se:mau:diva-36992 (URN)10.24834/isbn.9789178771462 (DOI)978-91-7877-145-5 (ISBN)978-91-7877-146-2 (ISBN)
Public defence
2020-12-17, Digitalt, Zoom, 09:30 (Swedish)
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Paper I is not included in the fulltext online

Available from: 2020-11-30 Created: 2020-11-30 Last updated: 2024-03-05Bibliographically approved

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