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"Thinking about it for somebody else": Alzheimer's disease research and proxy decision makers' translation of ethical principles into practice
Dunn LB, Fisher SR, Hantke M, Appelbaum PS, Dohan D, Young JP, Roberts LW.. The American journal of geriatric psychiatry : official journal of the American Association for Geriatric Psychiatry, 2013-02-06
Topic: Amyloid, tau and blood-test diagnosis
Objectives Ethical guidelines suggest that, when enrolling patients with dementia in research, alterative decision makers (proxies) should base their decision on a "substituted judgment" of how the patient would have decided. If unable to make a substituted judgment, proxies are asked to decide on the basis of the patient's best interests. This mixed-methods study is the first to examine explicitly whether and to what degree proxies differentiate between these two approaches and what considerations influence their mode of decision making. Design Interview study regarding enrollment of relative in hypothetical clinical trial of an investigational drug for Alzheimer disease. Participants were randomized to respond to questions about one of four hypothetical clinical trials that differed by levels of described risk and potential benefit. Participants Proxy decision makers (N = 40). Measurements Open-ended and rating-scaled items. Results Half of the proxies agreed with both of two rating-scaled items asking about different approaches to decision making-that is, agreeing that they would decide on the basis of how their relative would have decided and agreeing that they would decide on the basis of what they believed was in their relative's best interests. Narrative responses elaborated on themes within the following three major domains: Substituted judgment, best interests, and weighing substituted judgment and best interests. Substituted judgment was framed as honoring the patient's wishes and values. Best interests was described as a perceived duty to maintain quality of life and avoid burdens or risks. Weighing the two standards emerged as a challenging yet important, way of honoring wishes while maintaining quality of life. An unexpected theme was the attempt by alternative decision makers to discern their loved one's current versus premorbid research preferences. Conclusions Tensions exist between abstract ethical principles regarding decision-making "standards" and their translation into research decisions.
Cite this study APA, Vancouver, BibTeX · download .bib or .ris
APA 7th
Dunn, L. B., Fisher, SR., Hantke, M., Appelbaum, P. S., Dohan, D., Young, J. P., et al. (2013). "Thinking about it for somebody else": Alzheimer's disease research and proxy decision makers' translation of ethical principles into practice. The American journal of geriatric psychiatry : official journal of the American Association for Geriatric Psychiatry. https://doi.org/10.1016/j.jagp.2012.11.014
Vancouver
Dunn LB, Fisher SR, Hantke M, Appelbaum PS, Dohan D, Young JP, et al. "Thinking about it for somebody else": Alzheimer's disease research and proxy decision makers' translation of ethical principles into practice. The American journal of geriatric psychiatry : official journal of the American Association for Geriatric Psychiatry. 2013. doi:10.1016/j.jagp.2012.11.014. PMID: 23498380.
BibTeX
@article{dunn2013-23498380,
author = {Dunn, L. B. and Fisher, SR. and Hantke, M. and Appelbaum, P. S. and Dohan, D. and Young, J. P. and Roberts, L. W.},
title = {{"Thinking about it for somebody else": Alzheimer's disease research and proxy decision makers' translation of ethical principles into practice}},
journal = {The American journal of geriatric psychiatry : official journal of the American Association for Geriatric Psychiatry},
year = {2013},
doi = {10.1016/j.jagp.2012.11.014},
pmid = {23498380},
url = {https://doi.org/10.1016/j.jagp.2012.11.014}
}
Built from the record alzhub holds for this paper, not looked up. Volume, issue and page numbers are not held in the record. The record names 7 authors; APA and Vancouver show the first six, BibTeX and the downloads carry all of them. Check the citation against the original before you use it.
Key findings
- Objectives Ethical guidelines suggest that, when enrolling patients with dementia in research, alterative decision makers (proxies) should base their decision on a "substituted judgment" of how the patient would have decided.
- Results Half of the proxies agreed with both of two rating-scaled items asking about different approaches to decision making-that is, agreeing that they would decide on the basis of how their relative would have decided and agreeing that they would decide on the basis of what they believed was in their relative's best interests.
- An unexpected theme was the attempt by alternative decision makers to discern their loved one's current versus premorbid research preferences.
Why it matters
This interview study of 40 proxy decision makers found that half agreed with both deciding based on how their relative would have decided and deciding based on their relative's best interests. It examines how proxies make enrollment decisions for Alzheimer disease research rather than testing any treatment.
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Study details
- Participants40
- Evidence strengthHigh
How this study scored 50/100
Published in a peer-reviewed journal. Scored zero for study design and effect reported because the record does not state it.
| Component | Points | Why |
|---|---|---|
| Journal tier | 7 / 10 | Tier 3 — peer-reviewed journal (The American journal of geriatric psychiatry : official journal of the American Association for Geriatric Psychiatry) |
| Journal's citation record | 2 / 4 | American Journal of Geriatric Psychiatry: journal h-index 178 (OpenAlex, 2026-10-29) |
| Study design | 0 / 12 | No study design recorded — scores zero, not guessed (not stated in the record — scored 0) |
| Strength of evidence | 5 / 5 | Rated “high” in our summary |
| Peer-review validation | 10 / 10 | Peer-reviewed. Published as an article in a named peer-reviewed journal. |
| How recent | 1 / 5 | 2013 — within 20 year(s) of the newest study here |
| Sample size | 1 / 4 | 40 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 | 1 / 2 | Randomised (as stated in the record) |
| Times cited | 4 / 7 | Cited 45 times (OpenAlex, 2026-10-10) |
| Citations per year | 2 / 5 | 3.0 citations a year over 15 year(s) since 2013 |
| Impact for its field and year | 3 / 6 | Cited 4.4× the average for papers of its field and year (OpenAlex FWCI) |
| Cited by studies here | 1 / 6 | Cited by 1 other studies in this library |
| Still being cited | 1 / 4 | Cited 5 times in 2024–2026 (2026 still in progress; OpenAlex) |
| Senior author's track record | 2 / 4 | Last-listed author Laura Weiss Roberts: h-index 48 (OpenAlex, whole career) |
| Institution's track record | 3 / 3 | Stanford University: institution h-index 2,684 (OpenAlex) |
| Multi-centre collaboration | 2 / 3 | OpenAlex lists 5 institution(s) in 1 country |
| Indexed in PubMed | 2 / 2 | Indexed in PubMed (PMID 23498380) |
| Free to read | 0 / 2 | Behind a paywall — scores zero |
| Total | 50 / 100 | — |
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