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Decision-making on behalf of people living with dementia: how do surrogate decision-makers decide?
Fetherstonhaugh D, McAuliffe L, Bauer M, Shanley C.. Journal of medical ethics, 2016-10-25
Topic: Risk, prevention and care in population studies
Plain-language summary
Background For people living with dementia, the capacity to make important decisions about themselves diminishes as their condition advances. As a result, important decisions (affecting lifestyle, medical treatment and end of life) become the responsibility of someone else, as the surrogate decision-maker. This study investigated how surrogate decision-makers make important decisions on behalf of a person living with dementia. Methods Semi-structured interviews were conducted with 34 family members who had formally or informally taken on the role of surrogate decision-maker. Thematic analysis of interviews was undertaken, which involved identifying, analysing and reporting themes arising from the data. Results Analysis revealed three main themes associated with the process of surrogate decision-making in dementia: knowing the person's wishes; consulting with others and striking a balance. Most participants reported that there was not an advance care plan in place for the person living with dementia. Even when the prior wishes of the person with dementia were known, the process of decision-making was often fraught with complexity. Discussion Surrogate decision-making on behalf of a person living with dementia is often a difficult process. Advance care planning can play an important role in supporting this process. Healthcare professionals can recognise the challenges that surrogate decision-makers face and support them through advance care planning in a way that suits their needs and circumstances.
Cite this study APA, Vancouver, BibTeX · download .bib or .ris
APA 7th
Fetherstonhaugh, D., McAuliffe, L., Bauer, M., & Shanley, C. (2017). Decision-making on behalf of people living with dementia: how do surrogate decision-makers decide? Journal of medical ethics. https://doi.org/10.1136/medethics-2015-103301
Vancouver
Fetherstonhaugh D, McAuliffe L, Bauer M, Shanley C. Decision-making on behalf of people living with dementia: how do surrogate decision-makers decide? Journal of medical ethics. 2017. doi:10.1136/medethics-2015-103301. PMID: 27780889.
BibTeX
@article{fetherstonhaugh2017-27780889,
author = {Fetherstonhaugh, D. and McAuliffe, L. and Bauer, M. and Shanley, C.},
title = {{Decision-making on behalf of people living with dementia: how do surrogate decision-makers decide?}},
journal = {Journal of medical ethics},
year = {2017},
doi = {10.1136/medethics-2015-103301},
pmid = {27780889},
url = {https://doi.org/10.1136/medethics-2015-103301}
}
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Key findings
- As a result, important decisions (affecting lifestyle, medical treatment and end of life) become the responsibility of someone else, as the surrogate decision-maker.
- Results Analysis revealed three main themes associated with the process of surrogate decision-making in dementia: knowing the person's wishes; consulting with others and striking a balance.
Study details
- Evidence strengthLow
How this study scored 38/100
Published in a peer-reviewed journal. Scored zero for study design, sample size, effect reported, studied in people and randomized / blinded because the record does not state it. We have no data on journal's citation record, times cited, citations per year, impact for its field and year, cited by studies here, still being cited, senior author's track record, institution's track record and multicenter collaboration, so those were left out: it earned 22 of the 58 points we could judge it on, which is 38 out of 100.
| Component | Points | Why |
|---|---|---|
| Journal tier | 7 / 10 | Tier 3 — peer-reviewed journal (Journal of medical ethics) |
| Journal's citation record | — / 4 | No journal record from OpenAlex — left out of this score |
| Study design | 0 / 12 | No study design recorded — scores zero, not guessed (not stated in the record — scored 0) |
| Strength of evidence | 1 / 5 | Rated “low” in our summary |
| Peer-review validation | 10 / 10 | Peer-reviewed. Published as an article in a named peer-reviewed journal. |
| How recent | 2 / 5 | 2017 — within 10 year(s) of the newest study here |
| Sample size | 0 / 4 | Participant count not stated — scores zero (not stated in the record — scored 0) |
| Effect reported | 0 / 3 | No effect size reported — scores zero (not stated in the record — scored 0) |
| Studied in people | 0 / 3 | Not stated whether this was studied in people — scores zero (not stated in the record — scored 0) |
| Randomized / blinded | 0 / 2 | No randomization or blinding stated — scores zero (not stated in the record — scored 0) |
| Times cited | — / 7 | No citation count (not found in OpenAlex) — left out of this score |
| Citations per year | — / 5 | No citation count or no year — left out of this score |
| Impact for its field and year | — / 6 | No field-weighted citation impact (OpenAlex has none yet) — left out of this score |
| Cited by studies here | — / 6 | Not yet checked against this library's citation graph — left out of this score |
| Still being cited | — / 4 | No yearly citation counts — left out of this score |
| Senior author's track record | — / 4 | Senior author's record not available — left out of this score |
| Institution's track record | — / 3 | No institution listed in OpenAlex — left out of this score |
| Multicenter collaboration | — / 3 | Institutions not listed — left out of this score |
| Indexed in PubMed | 2 / 2 | Indexed in PubMed (PMID 27780889) |
| Free to read | 0 / 2 | Behind a paywall — scores zero |
| Points | 22 / 58 | Scored on 11 of 20 parts. We have no data for the rest, so they are left out: 22 of the 58 points we could judge it on is 38 out of 100. |
| Total | 38 / 100 | — |
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