Abstract
End-of-Life Preferences of Persons with Mild-to-Moderate Dementia (SCI937)
Journal of pain and symptom management, Vol.61(3), pp.689-689
03/01/2021
DOI: 10.1016/j.jpainsymman.2021.01.098
Abstract
Background
Previous research has suggested that persons with mild-to-moderate dementia can express end-of-life preferences coherently. This qualitative analysis was to describe the expressed values underlying end-of-life preferences of persons with mild-to-moderate dementia.
Methods
We used content analysis to examine transcripts of 23 SPIRIT (Sharing Patient’s Illness Representation to Increase Trust) sessions. SPIRIT is an evidence-based advance care planning (ACP) intervention where a patient discusses preferences for end-of-life care with a surrogate decision-maker, facilitated by a trained nurse. Transcripts were from a randomized trial to pilot test SPIRIT for persons with dementia. The analysis was focused on patients’ responses to four hypothetical outcomes of life-sustaining treatment (not being able to recognize family/friends, living in uncontrollable pain, living with uncontrolled bladder/bowels, living in a nursing home until death). During SPIRIT, patients were asked whether each outcome would be acceptable, unacceptable, or unsure, and their rationales. Frequencies were used to summarize coded rationales for patients’ responses to each outcome.
Results
For the outcome of being unable to recognize family/friends, 14 (78%) viewed it as unacceptable, most frequently citing “pointless living” (n=9). Four patients (22%) found it acceptable/unsure; two patients explained the reason being “accepting what cannot be changed.” For being in uncontrolled pain, 18 (90%) expressed it would be unacceptable, most commonly citing “unwillingness to tolerate suffering” (n=10). For the outcome of living with uncontrolled bowels, 10 (59%) found it unacceptable, most frequently citing “being a burden on family” (n=5). Twelve patients (67%) found living in a nursing home until death to be acceptable/unsure; eight expressed the reason, “focusing on the positive”.
Conclusion
Overall, patients expressed their end-of-life preferences with clear rationales that are similar to what has been documented for those without dementia. Our findings support ACP for persons with dementia.
Details
- Title: Subtitle
- End-of-Life Preferences of Persons with Mild-to-Moderate Dementia (SCI937)
- Creators
- Carolina Gustafson - Emory UniversityCarrie Henry - Emory UniversityMi-Kyung Song - Emory University
- Resource Type
- Abstract
- Publication Details
- Journal of pain and symptom management, Vol.61(3), pp.689-689
- DOI
- 10.1016/j.jpainsymman.2021.01.098
- ISSN
- 0885-3924
- eISSN
- 1873-6513
- Publisher
- Elsevier Inc
- Number of pages
- 1
- Language
- English
- Date published
- 03/01/2021
- Academic Unit
- Nursing
- Record Identifier
- 9984966693402771
Metrics
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