Dataset Information

Social regulation activities in end-of-life: a qualitative study on completion of advance directives in Swiss nursing homes.

ABSTRACT:

Background

In Switzerland as in many countries, steady trend is observed in nursing homes to promote writing of advanced directives (ADs). Implementation of ADs reflects the rise in public concern for the persons' right to self-determination and informed decision. The issue of end-of-life conditions is particularly acute in situations with dementia. This article investigates how ADs interventions in nursing homes strive simultaneously to behave in line with the principles of care ethics and with the intention to respond to legally binding instructions. Healthcare to dying residents with dementia in nursing homes is interpreted in light of the Regulation theory.

Methods

Nursing home palliative care reference nurses were contacted through questionnaire. One hundred twenty-one addresses were reached, 69 responses were collected, giving a response rate of 57%. In order to deepen the understanding, 10 semi-directive interviews were conducted in 10 different nursing facilities with 12 palliative nurses.

Results

Presently, Swiss nursing homes are lacking a model of AD suitable to people with dementia. The study sheds light on dissimilarities in the purpose assigned to ADs' procedure in the different facilities. Discrepancies in end-of-life care practices reveal more the influence of structural and organisational devices specific to each setting than conflicting views on end-of-life care principles. We analyse the interpretation of the Law and its implementation in the participating NHs as compromises that could be accounted for as a form of social regulation.

Conclusion

Dementia accentuates the uncertainty inherent to end-of-life trajectories. The implementation of standardised procedures aimed at collecting the wishes of the person deprived of his or her discernment is source of dissonances with regard to the multiple interests involved in these care situations. In this context, the drafting of ADs during end-of-life care in NH correspond to new normative constraints requiring new collective regulation actions.

SUBMITTER: Droz Mendelzweig M

PROVIDER: S-EPMC7181527 | biostudies-literature | 2020 Apr

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

Social regulation activities in end-of-life: a qualitative study on completion of advance directives in Swiss nursing homes.

Droz Mendelzweig M M

BMC palliative care 20200423 1

<h4>Background</h4>In Switzerland as in many countries, steady trend is observed in nursing homes to promote writing of advanced directives (ADs). Implementation of ADs reflects the rise in public concern for the persons' right to self-determination and informed decision. The issue of end-of-life conditions is particularly acute in situations with dementia. This article investigates how ADs interventions in nursing homes strive simultaneously to behave in line with the principles of care ethics ...[more]

PMID: 32326934

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Project description:Demand for nursing home (NH) care by patients with end-stage renal disease (ESRD) is likely to increase with growing numbers of older adults initiating chronic dialysis. We completed a systematic review to summarize the literature on NH residents with ESRD.MEDLINE, CINAHL, EMBASE, and relevant conference proceedings were searched to identify articles using the following MESH terms or related key words in the title or abstract: "residential facilities", "renal dialysis", "renal replacement therapy", and "chronic kidney failure". We selected case control, cohort studies, and clinical trials that included older adults with ESRD (defined as those receiving chronic dialysis or those with stage 5 chronic kidney disease) living in residential care facilities. We abstracted information on study design, quality, and results.Of 198 unique citations identified by the search strategy, 14 articles met eligibility criteria. Most articles were multicenter studies that were conducted in the 1990 s. One study focused on patients with stage 5 chronic kidney disease, and the remaining 13 studies focused on patients receiving chronic dialysis, of which eight studies included only those receiving peritoneal dialysis, four studies included patients receiving both peritoneal dialysis and hemodialysis, and one study included only patients receiving hemodialysis. All studies were observational, no clinical trials were identified, and study design limitations and heterogeneity within study populations were common. Summarizing results across these studies suggests that NH residents with ESRD have limited survival, particularly early after dialysis initiation. Functional impairment is highly prevalent in this population and independently associated with poor outcomes.NH residents with ESRD appear to be a particularly vulnerable population, but current information on their prevalence, characteristics, and outcomes is limited. Further research is needed to provide a better understanding of modifiable predictors of survival and functional decline in this population.

Dataset Information

Social regulation activities in end-of-life: a qualitative study on completion of advance directives in Swiss nursing homes.

Background

Methods

Results

Conclusion

Publications

Social regulation activities in end-of-life: a qualitative study on completion of advance directives in Swiss nursing homes.

Similar Datasets

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