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Ethical challenges in end-stage dementia: Perspectives of professionals and family care-givers
Inbal Halevi Hochwald, Gila Yakov, Zorian Radomyslsky, Yehuda Danon, Rachel Nissanholtz-Gannot. Nursing ethics, 2021-06-11
Topic: Health services, long-term care and technology
We found dilemmas regarding palliative care to be the main theme, including definition of the disease as terminal, choosing "comfort" over "life-prolonging," clarifying patients' wishes and deciding whether or not to use artificial feeding. Both PSMs and family caregivers deal with ethical dilemmas and have reached different conclusions, both legitimate. Comprehending dementia as a terminal disease influenced participants' perceptions of the relevancy of palliative care for people with end-stage dementia. Discrepancies between PSMs and family caregivers in caring for people with end-stage dementia were found in both home hospice unit and home care unit environments, raising potential conflicts regarding decisions for end-of-life care. Communication between PSMs and family caregivers is crucial for the discussion about the discrepancies regarding the unique dilemmas of caring for people with end-stage dementia and bridging the gap between them. Lack of communication and resources can hamper the provision of an acceptable solution for quality and equality of care in the best interest of people with end-stage dementia.
Key findings
- We found dilemmas regarding palliative care to be the main theme, including definition of the disease as terminal, choosing "comfort" over "life-prolonging," clarifying patients' wishes and deciding whether or not to use artificial feeding.
- Both PSMs and family caregivers deal with ethical dilemmas and have reached different conclusions, both legitimate.
- Comprehending dementia as a terminal disease influenced participants' perceptions of the relevancy of palliative care for people with end-stage dementia.
- Discrepancies between PSMs and family caregivers in caring for people with end-stage dementia were found in both home hospice unit and home care unit environments, raising potential conflicts regarding decisions for end-of-life care.
- Communication between PSMs and family caregivers is crucial for the discussion about the discrepancies regarding the unique dilemmas of caring for people with end-stage dementia and bridging the gap between them.
Study details
- Evidence strengthLow
How this study scored 41/100
Published in a peer-reviewed journal. Scored zero for study design, sample size, effect reported, studied in people and randomised / 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, multi-centre collaboration and free to read, so those were left out: it earned 23 of the 56 points we could judge it on, which is 41 out of 100.
| Component | Points | Why |
|---|---|---|
| Journal tier | 7 / 10 | Tier 3 — peer-reviewed journal (Nursing 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 | 3 / 5 | 2021 — within 6 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) |
| Randomised / blinded | 0 / 2 | No randomisation 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 |
| Multi-centre collaboration | — / 3 | Institutions not listed — left out of this score |
| Indexed in PubMed | 2 / 2 | Indexed in PubMed (PMID 34112013) |
| Free to read | — / 2 | Access not recorded — left out of this score |
| Points | 23 / 56 | Scored on 10 of 20 parts. We have no data for the rest, so they are left out: 23 of the 56 points we could judge it on is 41 out of 100. |
| Total | 41 / 100 | — |
What each of these 20 components measures, and what this score is not →
Read the original
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Cite this study APA, Vancouver, BibTeX · download .bib or .ris
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APA 7th
Hochwald, I. H., Yakov, G., Radomyslsky, Z., Danon, Y., & Nissanholtz-Gannot, R. (2021). Ethical challenges in end-stage dementia: Perspectives of professionals and family care-givers. Nursing ethics. https://doi.org/10.1177/0969733021999748
Vancouver
Hochwald IH, Yakov G, Radomyslsky Z, Danon Y, Nissanholtz-Gannot R. Ethical challenges in end-stage dementia: Perspectives of professionals and family care-givers. Nursing ethics. 2021. doi:10.1177/0969733021999748. PMID: 34112013.
BibTeX
@article{hochwald2021-34112013,
author = {Hochwald, Inbal Halevi and Yakov, Gila and Radomyslsky, Zorian and Danon, Yehuda and Nissanholtz-Gannot, Rachel},
title = {{Ethical challenges in end-stage dementia: Perspectives of professionals and family care-givers}},
journal = {Nursing ethics},
year = {2021},
doi = {10.1177/0969733021999748},
pmid = {34112013},
url = {https://doi.org/10.1177/0969733021999748}
}
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