Evidence map›Paper›PMID 31830967›Full record

ArticleBMC palliative care2019

"Whatever happens, happens" challenges of end-of-life communication from the perspective of older adults and family caregivers: a Qualitative study.

Jennifer Im, Susanna Mak, Ross Upshur, Leah Steinberg, Kerry Kuluski

Abstract read
PubMed Full text at PMC Publisher
In one paragraph

Article in BMC palliative care, 2019. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 19 papers.

0numbers the graph read from it
0cells of the map it votes in
19citing papers in PubMed
–field-weighted citation impact
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

19 citing papers in PubMed.

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  4. A Mixed-Methods Comparison of Interventions to Increase Advance Care Planning.Journal of the American Board of Family Medicine : JABFM
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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

5 authors.

Jennifer ImInstitute of Health Policy, Management, and Evaluation, University of Toronto, Canada155 College Street - Suite 425, Toronto, Ontario, M5T 1P8, Canada. JENNIFER.IM@MAIL.UTORONTO.CA.ORCID http://orcid.org/0000-0003-3059-4586
Susanna MakDivision of Cardiology, Mount Sinai Hospital, Sinai Health System, Toronto, Ontario, Canada.
Ross UpshurInstitute of Health Policy, Management, and Evaluation, University of Toronto, Canada155 College Street - Suite 425, Toronto, Ontario, M5T 1P8, Canada.
Leah SteinbergDepartment of Family & Community Medicine, University of Toronto, Toronto, Ontario, Canada.
Kerry KuluskiInstitute of Health Policy, Management, and Evaluation, University of Toronto, Canada155 College Street - Suite 425, Toronto, Ontario, M5T 1P8, Canada.

Funding

Canadian Frailty Network Interdisciplinary Fellowship Program AwardHealth System Performance Research Network (#06034Temmy Latner Centre for Palliative Care Golda Fine AwardTrillium Health Partners Foundation Dr. Mathias Gysler Research Chair in Patient and Family Centered Care
6 · The paper itself

Abstract

backgroundEffective communication is integral to the delivery of goal-concordant care for older adults and their family caregivers, and yet, it is uncommon in people with serious illness. This study explores the challenges of integrating end-of-life communication into heart failure management from the perspectives of older adults and family caregivers.

methodsIn a qualitative study of older adults with heart failure and their family caregivers, fourteen semi-structured interviews were conducted with 19 participants in Ontario, Canada. The interviews were transcribed verbatim and thematic analysis was applied to analyze the data.

resultsFour themes were identified in the context of participants' understanding of illness: 1) trivializing illness-related challenges, 2) positivity in late life, 3) discomfort in having end-of-life conversations, and 4) reluctant to engage despite need. These challenges often intertwine with one another. Most participants had not engaged in end-of-life discussions with their clinicians or family members.

conclusionThe findings provide insights that can inform approaches to integrate end-of-life communication for older adults with serious illness and caregivers. The identified challenges highlight a need for end-of-life communication to occur earlier in illness to be able to support individuals throughout the period of decline. In addition, end-of-life communication should be introduced iteratively for those who may not be ready to engage. Alternative approaches to communication are needed to elicit the challenges that patients and caregivers experience throughout the progression of illness to improve care for people nearing the end of life.

Indexed as

Interpersonal RelationsAgedAged, 80 and overCaregiversFemaleHeart FailureHumansInterviews as TopicMaleOntarioQualitative ResearchTerminal CareCaregiversEnd-of-life communicationHeart failureOlder adultsPalliative careQualitative researchSerious illness

Identifiers

PMID31830967
PMCPMC6909516

What OpenQuestion holds

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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.