Evidence map›Paper›PMID 34826544›Full record

ArticleJournal of pain and symptom management2022

Mitigating End-of-Life Burden: Parallel Perspectives of Physician-Patients & Family Caregivers.

Jonathan J Suen, Emily Vo, Catherine A Clair, Marie T Nolan, Joseph J Gallo, Martha Abshire Saylor

Abstract read
PubMed Full text at PMC Publisher
In one paragraph

Article in Journal of pain and symptom management, 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.

0numbers the graph read from it
0cells of the map it votes in
0citing 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

0 citing papers in PubMed.

No citing paper in PubMed yet.

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

6 authors.

Jonathan J SuenJohns Hopkins School of Nursing (J.J.S, E.V., M.T.N., M.A.S.), Baltimore, Maryland, USA; Department of Epidemiology, Johns Hopkins Bloomberg School of Public Health (J.J.S.), Baltimore, Maryland, USA; Department of Health, Behavior and Society, Johns Hopkins Bloomberg School of Public Health (C.A.C.), Baltimore, Maryland, USA; Department of Mental Health, Johns Hopkins Bloomberg School of Public Health (J.J.G.), Baltimore, Maryland, USA.
Emily VoJohns Hopkins School of Nursing (J.J.S, E.V., M.T.N., M.A.S.), Baltimore, Maryland, USA; Department of Epidemiology, Johns Hopkins Bloomberg School of Public Health (J.J.S.), Baltimore, Maryland, USA; Department of Health, Behavior and Society, Johns Hopkins Bloomberg School of Public Health (C.A.C.), Baltimore, Maryland, USA; Department of Mental Health, Johns Hopkins Bloomberg School of Public Health (J.J.G.), Baltimore, Maryland, USA.
Catherine A ClairJohns Hopkins School of Nursing (J.J.S, E.V., M.T.N., M.A.S.), Baltimore, Maryland, USA; Department of Epidemiology, Johns Hopkins Bloomberg School of Public Health (J.J.S.), Baltimore, Maryland, USA; Department of Health, Behavior and Society, Johns Hopkins Bloomberg School of Public Health (C.A.C.), Baltimore, Maryland, USA; Department of Mental Health, Johns Hopkins Bloomberg School of Public Health (J.J.G.), Baltimore, Maryland, USA.
Marie T NolanJohns Hopkins School of Nursing (J.J.S, E.V., M.T.N., M.A.S.), Baltimore, Maryland, USA; Department of Epidemiology, Johns Hopkins Bloomberg School of Public Health (J.J.S.), Baltimore, Maryland, USA; Department of Health, Behavior and Society, Johns Hopkins Bloomberg School of Public Health (C.A.C.), Baltimore, Maryland, USA; Department of Mental Health, Johns Hopkins Bloomberg School of Public Health (J.J.G.), Baltimore, Maryland, USA.
Joseph J GalloJohns Hopkins School of Nursing (J.J.S, E.V., M.T.N., M.A.S.), Baltimore, Maryland, USA; Department of Epidemiology, Johns Hopkins Bloomberg School of Public Health (J.J.S.), Baltimore, Maryland, USA; Department of Health, Behavior and Society, Johns Hopkins Bloomberg School of Public Health (C.A.C.), Baltimore, Maryland, USA; Department of Mental Health, Johns Hopkins Bloomberg School of Public Health (J.J.G.), Baltimore, Maryland, USA.
Martha Abshire SaylorJohns Hopkins School of Nursing (J.J.S, E.V., M.T.N., M.A.S.), Baltimore, Maryland, USA; Department of Epidemiology, Johns Hopkins Bloomberg School of Public Health (J.J.S.), Baltimore, Maryland, USA; Department of Health, Behavior and Society, Johns Hopkins Bloomberg School of Public Health (C.A.C.), Baltimore, Maryland, USA; Department of Mental Health, Johns Hopkins Bloomberg School of Public Health (J.J.G.), Baltimore, Maryland, USA. Electronic address: Mabshir1@jhu.edu.

Funding

Decision Making at the End of Life: A Mixed Methods StudyR01NR014068 · NINR · JOHNS HOPKINS UNIVERSITY · PI GALLO, JOSEPH JOHN, NOLAN, MARIE T. · 2014 to 2017
$2.0M
Investigating the Relationship Between Age-Related Hearing Loss and Loneliness Among Community-Dwelling Older AdultsF31AG071353 · NIA · JOHNS HOPKINS UNIVERSITY · PI SUEN, JONATHAN J. · 2021 to 2023
$104k
NIA NIH HHS F31 AG071353NINR NIH HHS R01 NR014068
6 · The paper itself

Abstract

contextPatients and family caregivers perceive burden in care at the end of life differently even when the patient is a physican.

objectivesWe describe how older adult physicians as prospective patients (hereafter "physician-patients") and family caregivers of physician-patients view burden in care at the end of life.

methodsInterviews with physician-patients (n = 28) and family caregivers (n = 26) of physician-patients who had died were conducted as part of a shared decision-making study. Both groups expressed concerns with burden at the end of life. We coded and analyzed descriptions of burden using inductive and deductive approaches to coding sub-themes as in qualitative description. We then created a conceptual model depicting the relationships among the concepts, returning to the interviews to verify respective contexts.

resultsUnilateral actions taken at different points in the illness trajectory by both groups suggested different concerns about burden occurring in parallel. While everyone anticipated burden associated with care at the end of life, physician-patients made legal and financial arrangements to minimize this burden. Nevertheless several family caregivers described the burden that they experienced. We propose a conceptual model to guide future research and care.

conclusionPhysician-Patients ' clinical insights drive their attempts to alleviate burden on their families. However, family caregivers still experienced burden. Recognizing the parallel perspectives of burden may inform the type and timing of interventions to effectively minimize burden and provide compassionate care to both patients and families at the end of life.

Indexed as

CaregiversPhysiciansAgedDeathFamilyHumansPhysician-Patient RelationsProspective StudiesQualitative ResearchBurdencaregiverend of lifeshared decision making

Identifiers

PMID34826544
PMCPMC8930440

What OpenQuestion holds

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Registered trials

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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.