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Documentation of older people’s end-of-life care in the context of specialized palliative care: a retrospective review of patient records
Malmö University, Faculty of Health and Society (HS), Department of Care Science (VV). Kristianstad University.ORCID iD: 0000-0002-9362-7464
Kristianstad University.
Lund University; Region Skane.
Kristianstad University; Lund University; Region Skane.
2021 (English)In: BMC Palliative Care, E-ISSN 1472-684X, Vol. 20, article id 91Article in journal (Other academic) Published
Abstract [en]

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.

Place, publisher, year, edition, pages
BioMed Central, 2021. Vol. 20, article id 91
National Category
Nursing
Identifiers
URN: urn:nbn:se:mau:diva-37032DOI: 10.1186/s12904-021-00771-wISI: 000668605600003PubMedID: 34167547Scopus ID: 2-s2.0-85108832977OAI: oai:DiVA.org:mau-37032DiVA, id: diva2:1505169
Note

Paper IV published in dissertation as manuscript with title ”Existential aspects documented in older people's patient records in a context of specialised palliative care: a retrospective review”

Available from: 2020-11-30 Created: 2020-11-30 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)
Opponent
Note

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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