End-of-life expectations and experiences among nursing home patients and their relatives—A synthesis of qualitative studies

Fosse, Anette; Schaufel, Margrethe Aase; Ruths, Sabine; Malterud, Kirsti

doi:10.1016/j.pec.2014.05.025

Cited by 82 publications

(102 citation statements)

References 54 publications

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“…21 Existing literature has focused on the completion of an AD; 17 our research has revealed that conversations around the content of ADs was sparse. Similar to the finding of Fosse and colleagues, 10 we found residents wanted to be involved in decision making concerning care. Staff reported residents often conveyed preferences informally, but no process was evident to integrate these wishes into a systematic or formal way of conveying preferences.…”

Section: Discussionsupporting

confidence: 88%

“…8 When wishes were recorded, documents often were not in agreement with the resident's verbal wishes. 9 Fosse and colleagues (2014) 10 found in their review of EOL experiences that residents wanted to be involved in EOL related choices, but family and staff did not always recognize resident preferences or ability to consent to preferences. 10 Research indicates quality of care in NHs is suboptimal, with deficits in staff training, symptom management, treating residents with dignity and respect, and communication.…”

Section: Introductionmentioning

confidence: 99%

“…9 Fosse and colleagues (2014) 10 found in their review of EOL experiences that residents wanted to be involved in EOL related choices, but family and staff did not always recognize resident preferences or ability to consent to preferences. 10 Research indicates quality of care in NHs is suboptimal, with deficits in staff training, symptom management, treating residents with dignity and respect, and communication. [11][12][13] Few NHs have systematic approaches to elicit and communicate information about resident preferences; 14 therefore staff may be unaware of resident preferences for EOL care.…”

Section: Introductionmentioning

confidence: 99%

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Conversations about End of Life: Perspectives of Nursing Home Residents, Family, and Staff

Towsley

Hirschman

Madden

2015

Journal of Palliative Medicine

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Background: Care in nursing homes (NHs) often overlooks individual values and preferences. Residents' voices are critical to discussions about preferences, yet there remains limited research on conversations about the end of life (EOL) from the perspective of older adults who reside in NHs. Objective: The aim of this study was to describe the communication, content and process, related to EOL conversations among residents, family, and staff. Methods: We used semistructured interviews in this qualitative, descriptive study to describe conversations about EOL preferences. We examined participants' conversation, when it occurred, and what was discussed. We queried about barriers to and facilitators in discussing EOL care in the NH setting. We interviewed residents (n = 16), family (n = 12), and interdisciplinary staff (n = 10) from four NHs. Results: The overarching theme-missed conversations-describes EOL-related communication. Residents, families, and staff rarely talked about EOL care preferences, nor did they pass along information about preferences or initiate conversations about EOL care with each other. Three categories explained missed conversations: inquiry (''No one asked''); assumptions (presence of an advance directive [AD], ''They know me''); and conveying (lack of conveying information or wishes). Existing barriers and lacking facilitators resulted in missed opportunities to hold conversations about EOL preferences. Conclusions: Not all residents wanted to have conversations, but many wanted to be asked about their preferences. Missed conversations may adversely affect the quality of EOL care. Conversations with residents can be initiated by asking residents who they would like involved in the conversation and drawing upon the experience of others.

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Section: Discussionsupporting

confidence: 88%

Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

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Conversations about End of Life: Perspectives of Nursing Home Residents, Family, and Staff

Towsley

Hirschman

Madden

2015

Journal of Palliative Medicine

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“…I en litteraturoversikt der man så på pasienters og pårørendes erfaringer med legens bidrag til god behandling, pleie og omsorg ved livets slutt, fant man at de ofte savnet en tilgjengelig og kompetent lege som aktivt deltok i samtaler og beslutninger rundt livets avslutning (28).…”

Section: Legedekningenunclassified

Forberedende samtaler i norske sykehjem

Gjerberg¹,

Lillemoen²,

Weaver³

et al. 2017

Tidsskriftet

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Spørreskjemaet finnes på tidsskriftet.no/gjerbergappendiksEngelsk oversettelse på www.tidsskriftet.no HOVEDBUDSKAP Et stort antall sykehjem praktiserte en form for forberedende samtale, men det var stor variasjon med hensyn til tidspunkt, innhold og hvem som deltar Et mindretall av sykehjemmene hadde retningslinjer for slike samtaler Det var først og fremst pårørende og sykehjemslegen som deltok, sykehjemspasientene deltok sjeldnere Pasientdeltagelsen økte med sykehjemmets legedekning BAKGRUNN Sykehjemspasienter er ofte skrøpelige og har flere kroniske lidelser. Økt risiko for kritiske hendelser, sykehusinnleggelser og død peker på behovet for samtaler med pasient og pårørende om tiden fremover, hvordan man skal bli enig om gode beslutninger og hva som skal skje hvis helsetilstanden forverres. Tidligere studier har vist at et mindretall av sykehjemmene praktiserer slike forberedende samtaler.MATERIALE OG METODE En spørreskjemaundersøkelse ble forsommeren 2014 sendt til alle sykehjem i Norge. Det ble spurt om forekomst av og innhold i forberedende samtaler.RESULTATER Det kom svar fra 57 % av sykehjemmene (486 sykehjem). Omtrent to tredeler rapporterte at de «alltid» eller «som oftest» gjennomførte forberedende samtale og omtrent en tredel av dem hadde skriftlige retningslinjer. Samtalene fant først og fremst sted når pasientens helsetilstand ble forverret, når pasienten gikk inn i siste livsfase eller i forbindelse med innkomstsamtalen. Sykehusinnleggelse, smertelindring og hjerte-lunge-redning (HLR) var de hyppigste temaene. Pårørende og sykehjemslege deltok som oftest i samtalene, pasientene deltok mer sjeldent.FORTOLKNING Det var store variasjoner mellom sykehjemmene når det gjaldt forberedende samtaler. Dette kan dels forstås på bakgrunn av mangel på nasjonale retningslinjer, dels at dette er en relativ ny diskusjon i Norge. At pasientene sjelden deltok i samtalene, har trolig sammenheng med at det hos disse er en høy andel med kognitiv svikt, at legedekningen er lav og at det er en mangelfull kultur for pasientmedvirkning.Omtrent 47 % av alle dødsfall i Norge i 2013 fant sted i sykehjem (1). En økende andel sykehjemspasienter med kognitiv svikt (2), og et høyt antall kritiske hendelser, som akutt forverring av helsetilstanden, representerer utfordringer i forhold til å gi pleie og behandling i tråd med pasientens ønsker og verdier. For at de medisinske beslutninger som fattes skal vaere i tråd med etikk og lovverk, er det viktig at pasientene får uttrykt sine ønsker i tide. Er det noe de frykter, hvor mye informasjon ønsker de, hvordan ønsker de selv at deres pårørende skal bli involvert i beslutninger? Og finnes det helsehjelp de ikke vil ha?Pasientens preferanser innen pleie og behandling kan avdekkes gjennom en «for-beredende samtale» (advance care planning, ACP). Slike samtaler kan dreie seg om sykehusinnleggelser, livsforlengende behandling, symptomlindring, livets sluttfase og mer eksistensielle spørsmål (3, 4). Det siste tiåret er det i en rekke vestlige land blitt vanlig å registrere bruken av ulike ...

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“…Results from a randomized controlled trial showed that ACP may improve EOL care of older people and reduce stress, anxiety, and depression of family members 2. On the other hand, a recent review study showed that nursing home staff often failed to rec-ognize actual residents’ EOL preferences 6. In addition, family members, who may be asked to act as surrogate decision-makers, often failed to predict patient’s treatment preferences 7.…”

Section: Introductionmentioning

confidence: 99%

Perspectives of older people living in long-term care facilities and of their family members toward advance care planning discussions: a systematic review and thematic synthesis

Mignani

Ingravallo

Mariani

et al. 2017

CIA

115

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ObjectiveWe aimed to search and synthesize qualitative studies exploring the perspectives of older people living in long-term care facilities and of their family members about advance care planning (ACP) discussions.MethodsThe enhancing transparency in reporting the synthesis of qualitative research (ENTREQ) framework was used to guide the review and report its results. PubMed, CINAHL, and PsycINFO were searched for studies published between January 2000 and November 2015. All included studies were assessed for comprehensiveness of reporting, and a thematic synthesis of their results was performed.ResultsThe nine included studies differed in terms of qualitative method used, comprehensiveness of reporting, and geographical origin. The thematic synthesis led to the identification of four main themes: 1) plans already made; 2) end-of-life care and decision-making; 3) opinions and attitudes toward ACP; and 4) how, when, about what, and with whom to do ACP.ConclusionDespite their willingness to be involved in a shared decision-making process, older residents and their families still have little experience with ACP.Practical implicationsIn view of implementing ACP for elders living in long-term care facilities, it would be important to rethink ACP and also to incorporate their nonmedical preferences, according to their own priorities.

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End-of-life expectations and experiences among nursing home patients and their relatives—A synthesis of qualitative studies

Abstract: High-quality end-of-life care in nursing homes relies on organization, funding and skilled staff, including available doctors who are able to recognize illness trajectories and perform individualized Advance Care Planning.

Cited by 82 publications

References 54 publications

Conversations about End of Life: Perspectives of Nursing Home Residents, Family, and Staff

Conversations about End of Life: Perspectives of Nursing Home Residents, Family, and Staff

Forberedende samtaler i norske sykehjem

Perspectives of older people living in long-term care facilities and of their family members toward advance care planning discussions: a systematic review and thematic synthesis

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