Background: Despite the importance of persons with dementia (PWDs) engaging in advance care planning (ACP) at a time when they are still competent to appoint a surrogate decision maker and meaningfully participate in ACP discussions, studies of ACP in PWDs are rare.
Objective: We conducted an intervention development study to adapt an efficacious ACP intervention, SPIRIT (sharing patient's illness representations to increase trust), for PWDs in early stages (recent Montreal Cognitive Assessment [MoCA] score =13) and their surrogates and assess whether SPIRIT could help PWDs engage in ACP.
Design: A formative expert panel review of the adapted SPIRIT, followed by a randomized trial with qualitative interviews, was conducted. Patient–surrogate dyads were randomized to SPIRIT in person (in a private room in a memory clinic) or SPIRIT remote (via videoconferencing from home).
Setting/Subjects: Twenty-three dyads of PWDs and their surrogates were recruited from an outpatient brain health center. Participants completed preparedness outcome measures (dyad congruence on goals of care, patient decisional conflict, and surrogate decision-making confidence) at baseline and two to three days post-intervention, plus a semistructured interview. Levels of articulation of end-of-life wishes of PWDs during SPIRIT sessions were rated (3 = expressed wishes very coherently, 2 = somewhat coherently, and 1 = unable to express coherently).
Results: All 23 were able to articulate their end-of-life wishes very or somewhat coherently during the SPIRIT session; of those, 14 PWDs had moderate dementia. While decision-making capacity was higher in PWDs who articulated their wishes very coherently, MoCA scores did not differ by articulation levels. PWDs and surrogates perceived SPIRIT as beneficial, but the preparedness outcomes did not change pre–post.
Conclusions: SPIRIT engaged PWDs and surrogates in meaningful ACP discussions, but requires testing of efficacy and long-term outcomes.
BACKGROUND: Determining intervention efficacy depends as much on the control group as on the intervention, but little attention has been given to the control condition in psychoeducational trials in palliative care.
OBJECTIVES: To examine (1) research practice regarding control conditions that are neither usual care nor no-treatment controls in randomized trials of psychoeducational palliative care interventions and (2) the rationale and completeness of the descriptions of control conditions in trial reports.
METHODS: PubMed, EMBASE, PsycINFO, and Web of Science were searched. After screening 1603 articles, 70 full-text articles were assessed for eligibility. The final sample included 9 trial reports. We used the Delphi list for quality assessment and the modified intervention taxonomy checklist to assess active intervention and control conditions.
RESULTS: Four trials used an attention control designed to be equivalent to the structure of the active intervention. In another 4, the control condition included some aspects of attention control such that the mode of contact was similar to that in the active intervention, but either the amount or the intensity of attention was not similar. Only 3 trial reports explicitly stated the rationale for the choice of control condition. Although most reports contained delivery mode, materials, duration, frequency, and sequence, none described the qualifications or training required to deliver the control condition. Only 1 report mentioned the fidelity monitoring method, and none included fidelity data.
CONCLUSION: Our review of psychoeducational trials in palliative care calls for researchers' attention to appropriate selection, design, conduct and report of control conditions.
BACKGROUND: Adults who lack decision-making capacity and a surrogate ("unbefriended" adults) are a vulnerable, voiceless population in health care. But little is known about this population, including how medical decisions are made for these individuals.
OBJECTIVE: This integrative review was to examine what is known about unbefriended adults and identify gaps in the literature.
METHODS: Six electronic databases were searched using 4 keywords: "unbefriended," "unrepresented patients," "adult orphans," and "incapacitated patients without surrogates." After screening, the final sample included 10 data-based articles for synthesis.
RESULTS: Main findings include the following: (1) various terms were used to refer to adults who lack decision-making capacity and a surrogate; (2) the number of unbefriended adults was sizable and likely to grow; (3) approaches to medical decision-making for this population in health-care settings varied; and (4) professional guidelines and laws to address the issues related to this population were inconsistent. There have been no studies regarding the quality of medical decision-making and its outcomes for this population or societal impact.
CONCLUSION: Extremely limited empirical data exist on unbefriended adults to develop strategies to improve how medical decisions are made for this population. There is an urgent need for research to examine the quality of medical decision-making and its outcomes for this vulnerable population.