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Families' Experiences With End-of-Life Care in Nursing Homes and Associations With Dying Peacefully With Dementia
Bolt SR, Verbeek L, Meijers JMM, van der Steen JT.. Journal of the American Medical Directors Association, 2019-02-01
Topic: Risk, prevention and care in population studies
Objectives To examine family caregivers' experiences with end-of-life care for nursing home residents with dementia and associations with the residents dying peacefully. Design A secondary data analysis of family caregiver data collected in the observational Dutch End of Life in Dementia (DEOLD) study between 2007 and 2010. Setting and participants Data were collected at 34 Dutch nursing homes (2799 beds) representing the nation. We included 252 reports from bereaved family members of nursing home residents with dementia. Measures The primary outcome was dying peacefully, assessed by family members using an item from the Quality of Dying in Long-term Care instrument. Unpleasant experiences with end-of-life care were investigated using open-ended questions. Overall satisfaction with end-of-life care was assessed with the End-of-Life Satisfaction With Care (EOLD-SWC) scale, and families' appraisal of decision making was measured with the Decision Satisfaction Inventory. Associations were investigated with multilevel linear regression analyses using generalized estimating equations. Results Families' reports of unpleasant experiences translated into 2 themes: neglect and lack of respect. Neglect involved facing inaccessibility, disinterest, or discontinuity of relations, and negligence in tailored care and information. Lack of respect involved perceptions of being purposefully disregarded, an insensitive approach towards resident and family, noncompliance with agreements, and violations of privacy. Unpleasant experiences with end-of-life care were negatively associated with families' perceptions of the resident dying peacefully. Families' assessment of their relative dying peacefully was positively associated with satisfaction with end-of-life care and decision making. Conclusions/implications Families' reports of unpleasant experiences with end-of-life care may inform practice to improve perceived quality of dying of their loved ones. Humane and compassionate care and attention from physicians and other staff for resident and family may facilitate recollections of a peaceful death.
Key findings
- Overall satisfaction with end-of-life care was assessed with the End-of-Life Satisfaction With Care (EOLD-SWC) scale, and families' appraisal of decision making was measured with the Decision Satisfaction Inventory.
- Results Families' reports of unpleasant experiences translated into 2 themes: neglect and lack of respect.
- Unpleasant experiences with end-of-life care were negatively associated with families' perceptions of the resident dying peacefully.
- Families' assessment of their relative dying peacefully was positively associated with satisfaction with end-of-life care and decision making.
Study details
- Participants252
- Evidence strengthLow
How this study scored 47/100
Published in a peer-reviewed journal. Scored zero for study design, effect reported 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 and multi-centre collaboration, so those were left out: it earned 27 of the 58 points we could judge it on, which is 47 out of 100.
| Component | Points | Why |
|---|---|---|
| Journal tier | 7 / 10 | Tier 3 — peer-reviewed journal (Journal of the American Medical Directors Association) |
| 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 | 2019 — within 10 year(s) of the newest study here |
| Sample size | 2 / 4 | 252 participants |
| Effect reported | 0 / 3 | No effect size reported — scores zero (not stated in the record — scored 0) |
| Studied in people | 3 / 3 | Studied in people (participant count stated) |
| 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 30718151) |
| Free to read | 0 / 2 | Behind a paywall — scores zero |
| Points | 27 / 58 | Scored on 11 of 20 parts. We have no data for the rest, so they are left out: 27 of the 58 points we could judge it on is 47 out of 100. |
| Total | 47 / 100 | — |
What each of these 20 components measures, and what this score is not →
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APA 7th
Bolt, SR., Verbeek, L., Meijers, J. M. M., & van der Steen, J. T. (2019). Families' Experiences With End-of-Life Care in Nursing Homes and Associations With Dying Peacefully With Dementia. Journal of the American Medical Directors Association. https://doi.org/10.1016/j.jamda.2018.12.001
Vancouver
Bolt SR, Verbeek L, Meijers JMM, van der Steen JT. Families' Experiences With End-of-Life Care in Nursing Homes and Associations With Dying Peacefully With Dementia. Journal of the American Medical Directors Association. 2019. doi:10.1016/j.jamda.2018.12.001. PMID: 30718151.
BibTeX
@article{bolt2019-30718151,
author = {Bolt, SR. and Verbeek, L. and Meijers, J. M. M. and van der Steen, J. T.},
title = {{Families' Experiences With End-of-Life Care in Nursing Homes and Associations With Dying Peacefully With Dementia}},
journal = {Journal of the American Medical Directors Association},
year = {2019},
doi = {10.1016/j.jamda.2018.12.001},
pmid = {30718151},
url = {https://doi.org/10.1016/j.jamda.2018.12.001}
}