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End-of-life care in residential care homes: a retrospective study of the perspectives of family members using the VOICES questionnaire
Umeå University, Faculty of Medicine, Department of Nursing.
Umeå University, Faculty of Medicine, Department of Nursing. Department of Learning, Informatics, Management and Ethics/MMC, Karolinska Institutet, Stockholm, Sweden.ORCID iD: 0000-0002-8549-1886
Umeå University, Faculty of Medicine, Department of Nursing.
2017 (English)In: Scandinavian Journal of Caring Sciences, ISSN 0283-9318, E-ISSN 1471-6712, Vol. 31, no 1, p. 72-84Article in journal (Refereed) Published
Abstract [en]

BACKGROUND: In Europe, residential care homes (RCHs) are replacing hospitals as the place where death occurs, and they play an important role in end-of-life (EOL) care.

OBJECTIVE: The aim was to describe the quality of care during the last 3 months and last 3 days of life of those who died in RCHs as reported by family members. We also investigated whether there were differences in the EOL care of younger patients (<85 years) vs. the oldest old patients (≥85 years) as reported by family members.

DESIGN: A retrospective survey design.

METHODS: Deaths (n = 189) at 19 RCHs in one municipality in Sweden were included. Family members were sent the VOICES questionnaire 1 month after their elderly relative had died. Descriptive statistics were used.

RESULTS: In the last 3 days before death, most family members reported there was enough help with nursing (93%) and personal care (78.5%). Among the family members, 86% were told that the resident was likely to die shortly. Most (94.1%) of residents were reported to have died at their preferred place. No significant difference was found between age groups. Family members also reported that about half of the elderly had pain (46.5%) and 86.4% received treatment; 55.9% had breathlessness and 39.7% received treatment. Breathlessness was significantly (p = 0.01) more common in the younger group, and they were treated more often (p = 0.006) than the oldest old.

CONCLUSION: This study revealed an overall positive picture of personal and nursing care and communication. These findings indicate that the quality of EOL care at RCHs is high. Inadequate management was found for symptom relief the last days of life. This suggests that this subject merits further attention by care professionals. To achieve better quality of EOL care at RCHs, we emphasise the importance of systematically working to improve symptom relief.

Place, publisher, year, edition, pages
John Wiley & Sons, 2017. Vol. 31, no 1, p. 72-84
Keywords [en]
elderly, end of life, family members, palliative care, quality of care, residential care homes, VOICES questionnaire
National Category
Nursing
Identifiers
URN: urn:nbn:se:umu:diva-118613DOI: 10.1111/scs.12317ISI: 000394988700008PubMedID: 26987286OAI: oai:DiVA.org:umu-118613DiVA, id: diva2:915375
Available from: 2016-03-30 Created: 2016-03-24 Last updated: 2018-06-07Bibliographically approved
In thesis
1. Vård i livets slutskede på särskilt boende för äldre personer: närstående och vårdpersonals skattade och berättade erfarenheter
Open this publication in new window or tab >>Vård i livets slutskede på särskilt boende för äldre personer: närstående och vårdpersonals skattade och berättade erfarenheter
2017 (Swedish)Doctoral thesis, comprehensive summary (Other academic)
Alternative title[en]
End-of-life care in residential care homes for older persons : family members and care professionals reported and narrated experiences
Abstract [sv]

Bakgrund I Europa, blir det allt vanligare att äldre personer dör på särskilt boende i stället för på sjukhus. Särskilda boenden spelar därför en viktig roll när det gäller vård i livets slutskede. Målet med palliativ vård för personer med livshotande sjukdom och deras närstående är att öka livskvaliteten och lindra lidande. Strukturerade vårdplaner såsom Liverpool Care Pathway for care of the dying (LCP) kan vara ett sätt att öka vårdkvaliteten. Det saknas dock forskning om vård i livets slutskede på särskilda boenden när en strukturerad vårdplan har använts.

Syfte Det övergripande syftet med avhandlingen var att beskriva vård i livets slutskede på särskilt boende för äldre personer utifrån närstående och vårdpersonals skattade och berättade erfarenheter.

Metod Avhandlingen baseras på två kvantitativa (I, II) och två kvalitativa (III, IV) studier. Studie I baseras på frågeformuläret Views of Informal Carers – Evaluation of Services (VOICES) som har besvarats av närstående (n = 189) efter att en anhörig har dött. Data har därefter analyserats med beskrivande och jämförande statistik. Studie II baseras på data om alla förväntade dödsfall (n = 22 855) som registrerats i Svenska palliativregistret (SPR). Dödsfallsenkäten har besvarats av vårdpersonal och svaren har sedan analyserats med beskrivande statistik och univariat och multipel logistisk regressionsanalys. Studie III baseras på fokusgruppsintervjuer och enskilda intervjuer med vårdpersonal. Studie IV baseras på enskilda intervjuer med närstående. Data från studie III och IV har analyserats med hjälp av kvalitativ innehållsanalys.

Resultat Resultatet i studie I visar att majoriteten av de närstående skattade att den äldre personen fick tillräcklig hjälp såväl med personlig vård (78,5 %) som med sjukvård (93,0 %) de sista tre dagarna i livet. De närstående (86,2 %) rapporterade att de var informerade om att det var sannolikt att den äldre personen skulle avlida och majoriteten (94,1 %) av de äldre hade avlidit på önskad plats. Resultatet visade dock på hög förekomst av smärta (46,5 %) och andnöd (55,9 %). Det var ingen skillnad mellan åldersgrupperna när det gällde smärta men de äldre < 85 år hade signifikant högre förekomst av andnöd (70,6 %) jämfört med de äldre äldre, ≥ 85 år, (47,5 %). De äldre, < 85 år, hade signifikant oftare symtomlindring för andnöd (53,1 %) jämfört med äldre äldre, ≥ 85 år, (31,8 %).

Resultatet i studie II visar hög förekomst av smärta (68,8 %) och ångest (44,0 %). Faktorer associerade med symtomlindring av smärta, illamående, ångest och andnöd var dels att validerat smärtskattningsinstrument hade använts, dels att munhälsan var bedömd. Starkast samband var det mellan symtomlindring av tre symtom (smärta, andnöd och ångest) och att injektioner var förskrivna vid behov.

Resultatet i studie III visar att vårdpersonalen upplevde sig tryggare efter implementeringen av LCP genom att de hade fått ett gemensamt förhållningssätt, kände stöd att skräddarsy vården utifrån den döende personens individuella behov, kände stöd att involvera närstående i beslut och i vården samt hade blivit mer medvetna om vårdmiljön.

Resultatet i studie IV visar att närstående upplevde sig tryggare i en välbekant och varm atmosfär, att vara kontra inte vara involverad i vård i livets slutskede och att bli tröstade genom att bevittna vårdpersonalens strävan att lindra lidande.

Konklusion Resultatet från studierna i den här avhandlingen pekar på hög vårdkvalitet i livets slutskede på särskilt boende genom god omvårdnad, men resultatet pekar också mot förekomst av inadekvat symtomlindring och hög förekomst av smärta, andnöd och ångest de sista dagarna i livet. Det framkom ett tydligt samband mellan ordinerade injektioner vid behov och symtomlindring av smärta, illamående och ångest. Resultatet indikerar även vikten av att använda smärtskattningsinstrument och göra munhälsobedömningar för symtomlindring vid vård i livets slutskede. Således kan ett sätt att öka vårdkvaliteten för döende personer vara att det finns ordinerade injektionsläkemedel vid behov mot vanliga symtom, att använda validerade smärtskattningsinstrument och att göra munhälsobedömningar. Det framkom också att användandet av en standardiserad vårdplan såsom LCP kan vara ett sätt att förbättra vården för de äldre personerna i livets slutskede. Såväl vårdpersonalen som de närstående upplevde stöd av den struktur för bedömningar och vårdaktiviteter som LCP ger. Vårdpersonalen upplevde också stöd i att involvera närstående i vården och i vårdrelaterade beslut.

Abstract [en]

Background Hospital care for older people in Europe is being replaced by other care facilities such as residential care homes (RCHs). RCHs are therefore playing an increasing and important role in end-of-life (EOL) care. The goal of palliative care is to improve quality of life both for persons with life-threating diseases and for their family members. Care pathways such as the Liverpool Care Pathway for the Dying Patient (LCP) are used to improve the quality of EOL care. There is a lack of research focusing on family members’ and care professionals’ perspectives on the use of pathways in EOL care in RCHs. This thesis is part of a larger research project on the implementation of the LCP in RCHs.

Aim The overall aim of this thesis was to describe family members’ and care professionals’ perspectives on end-of-life care in residential care homes for older people.

Methods This thesis consists of four studies, two quantitative and two qualitative. The data in Study I were based on the questionnaire, “Views of Informal Carers – Evaluation of Services” (VOICES), filled in by family members (n=189) of older persons who had died in RCHs. Descriptive statistics were used to analyse the data. Study II was based on registered expected deaths in RCHs (n=22 855) reported to the Swedish Register of Palliative Care (SRPC) by care professionals. The data were explored with univariate and multivariate logistic regression analysis. In Study III and IV, a descriptive qualitative design was used. Data in study III were collected through focus groups and individual interviews with care professionals (n=24). The data in Study IV were collected through individual interviews with family members of residents who had died in RCHs (n=15). The data in Studies III and IV were analysed with qualitative content analysis.

Results The family members in Study I reported that they had been given enough help with nursing such as getting dressings change and with medication, and personal care such as bathing, dressing, help with eating and going to the bathroom, in the last three days of life. They also reported that they were told (86.2%) that the resident was likely to die shortly, and most of them (94.1%) reported that they felt that the resident had died in their preferred place. Just under half of the residents (46.5%) had experienced pain, with the majority (86.4%) receiving treatment for this symptom, and slightly more than half (55.9%) had experienced shortness of breath, with around a third of them (39.7%) receiving treatment for this. Shortness of breath was significantly more common in the younger age group (<85 years; p=0.01) and they were significantly more likely to have received treatment (p=0.006).

In Study II, the SRPC data revealed high prevalence of pain (68.8%) and anxiety (44.0%). Shortness of breath (14.1%) and nausea (10.2%) were less common. In the multivariate regression analyses, two explanatory factors were significantly associated with symptom relief, of pain, nausea, anxiety and shortness of breath: use of validated pain assessment scales, and assessment of oral health. In both the univariate and multivariate logistic regression analysis, individual presciptions of injections to be administered when required (PRN, pro re nata) for pain, nausea, and anxiety were significantly associated with relief of symptom.

The care professionals in Study III described several aspects of their experiences of EOL care after implementation of the LCP: they became more confident through a shared approach, they were supported in tailoring the care to the residents’ individual needs, they were supported in involving the family members in decision-making and care, and they had become more aware of the care environment.

The family members in Study IV also described several aspects of their experiences of care of the dying in RCHs where an EOL care pathway was used: they felt confident in a familiar and warm atmosphere, they were involved or not in the EOL care, and they were consoled by witnessing the care professionals’ endeavours to relieve suffering.

Conclusion The results described in this thesis indicate a high quality of nursing care and personal care, but also inadequate management of symptom relief in the last days of life for residents in RCHs. Still, despite a high prevalence of symptoms such as pain, shortness of breath, and anxiety, RCHs were described as a natural and appropriate place of death. The results confirm that use of a validated pain assessment scale and medication PRN prescribed could be a way to increase the quality of EOL care. The results also indicate that a standardized care pathway can offer one way to improve the quality of care. The care professionals felt supported in involving the family members in care and decision making, and both family members and care professionals felt supported in the care by the use of the LCP. 

Place, publisher, year, edition, pages
Umeå: Umeå universitet, 2017. p. 68
Series
Umeå University medical dissertations, ISSN 0346-6612 ; 1928
Keywords
care pathway, care professionals, end-of-life care, family members, older people, palliative care, residential care homes, residents, närstående, palliativ vård, särskilt boende, vårdpersonal, vårdplan, vård i livets slutskede, äldre personer
National Category
Nursing
Research subject
Caring Sciences
Identifiers
urn:nbn:se:umu:diva-142749 (URN)978-91-7601-791-3 (ISBN)
Public defence
2018-01-12, Aulan, Vårdvetarhuset, Umeå, 09:00 (Swedish)
Opponent
Supervisors
Available from: 2017-12-14 Created: 2017-12-11 Last updated: 2018-06-09Bibliographically approved

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