Evidence map›Paper›PMID 27829409›Full record

ArticleBMC medical ethics2016

"I just think that we should be informed" a qualitative study of family involvement in advance care planning in nursing homes.

Lisbeth Thoresen, Lillian Lillemoen

Open access · goldAbstract read
PubMed Full text at PMC Publisher
In one paragraph

Article in BMC medical ethics, 2016. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 30 papers, 3 of them syntheses that pooled it.

0numbers the graph read from it
0cells of the map it votes in
30citing papers in PubMed, 3 pooled it
4.2field-weighted citation impact, top 5% of its field
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

30 citing papers in PubMed, 3 syntheses or guidelines pooled it, 68 citations in OpenAlex.

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  11. The Involvement of Caregivers in the End-of-life Care of an Older Adult Living in a Long-term Care Home: A Qualitative Case Study with Nurses and Relatives.The Canadian journal of nursing research = Revue canadienne de recherche en sciences infirmieres · 2024
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  16. Reimagining Family Involvement in Residential Long-Term Care.Journal of the American Medical Directors Association · 2022
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4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

2 authors at 1 institution in 1 country.

Lisbeth ThoresenCentre for Medical Ethics and Department of Health Sciences, Institute of Health and Society, University of Oslo, Postboks 1130, Blindern, 0318, Oslo, Norway. lisbeth.thoresen@medisin.uio.no.ORCID 0000-0003-3617-9770
Lillian LillemoenCentre for Medical Ethics, Institute of Health and Society, University of Oslo, Postboks 1130, Blindern, 0318, Oslo, Norway.
University of Oslo · NO

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

backgroundAs part of the research project "End-of-life Communication in Nursing Homes. Patient Preferences and Participation", we have studied how Advance Care Planning (ACP) is carried out in eight Norwegian nursing homes. The concept of ACP is a process for improving patient autonomy and communication in the context of progressive illness, anticipated deterioration and end-of-life care. While an individualistic autonomy based attitude is at the fore in most studies on ACP, there is a lack of empirical studies on how family members' participation and involvement in ACP- conversations may promote nursing home patients' participation in decisions on future treatment and end-of-life care. Based on empirical data and family ethics perspectives, the purpose of this study is to add insights to the complexity of ACP-conversations and illuminate how a family ethics perspective may improve the quality of the ACP and promote nursing home patients' participation in advance care planning.

methodsParticipant observations of ACP-conversations in eight nursing homes. The observations were followed by interviews with patients and relatives together on how they experienced being part of the conversation, and expressing their views on future medical treatment, hospitalization and end-of-life issues.

resultsWe found that the way nursing home patients and relatives are connected and related to each other, constitutes an intertwined unit. Further, we found that relatives' involvement and participation in ACP- conversations is significant to uncover, and give the nursing home staff insight into, what is important in the nursing home patient's life at the time. The third analytical theme is patients' and relatives' shared experiences of the dying and death of others. Drawing on past experiences can be a way of introducing or talking about death.

conclusionsAn individual autonomy approach in advance care planning should be complemented with a family ethics approach. To be open to family ethics when planning for the patient's future in the nursing home is to be open to diversity and nuances and to the significance of the patient's former life and experiences.

Indexed as

Advance Care PlanningAttitudeCommunicationFamilyFamily RelationsPersonal AutonomyTerminal CareAged, 80 and overFemaleHomes for the AgedHospitalizationHumansInformed ConsentMaleNorwayNursing HomesAdvance Care PlanningAutonomyFamily ethicsQualitative study

Identifiers

PMID27829409
PMCPMC5103414
OpenAlexW2552843453

What OpenQuestion holds

Textmetadata
LicenceCC BY
Read underepoch 390

Registered trials

None linked

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.