Search

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.

Care consistent with preferences is the goal of advance care planning (ACP). However, comparing written preferences to actual end-of-life care may not capture consistency of care with preferences.We evaluated four additional types of consistency, using prospective data on written preferences and active clinical decision making by patients and their surrogates.Secondary analysis of data was done from a trial of an ACP intervention for patient-surrogate dyads. Forty-five patients died during the trial and comprised the sample for the analysis. Sources of data included patients' preferences in a written goals-of-care tool, medical record reviews, and two-week postbereavement interviews with surrogates to complement medical record reviews.Twenty-four patients (53.3%) received care consistent with written preferences and 11 (24.4%) inconsistent with written preferences. The remaining 10 patients (22.2%) died suddenly with no opportunity for treatment decision making. Eleven (24.4%) were able to participate in decision making with their surrogates; of those, 9 (81.8%) received care consistent with their expressed preferences. Twenty-two patients were incapacitated and thus the surrogate made treatment decisions alone; of those, 18 (81.8%) made decisions consistent with the patient's written preference.Simply comparing documented preferences for end-of-life care and medical records of care delivered does not adequately reflect the process of ACP and treatment decision making at the end of life. To understand consistency between preferences and end-of-life care, investigators need data on written and real-time expressed preferences.

Background: Nursing home (NH) residents with dementia experience high rates of intensive treatment near the end of life. Limited research examines whether treatment is concordant with goals of care (GOC). Objectives: We analyzed data from the GOC trial to describe family decision makers' preferred GOC and perceptions of goal-concordant care for NH residents with late-stage dementia We compared subsequent treatment orders when families chose a primary goal of comfort versus other goals. Design: We performed a secondary analysis of data from baseline and 9-month family decision-maker interviews and chart reviews. Setting and Participants: A total of 302 dyads of NH residents and family decision makers in 22 North Carolina NHs were enrolled. Measurements: In baseline and follow-up interviews, families reported on their and NH staff's primary GOC, and perceived prognosis and goal-concordant care. Chart reviews provided data on treatment orders, hospital transfers, and hospice, which were compared after selection of a primary goal of comfort versus other goals. Results: Family chose comfort as the primary goal for 66% of residents at baseline, and for nearly 80% by 9 months or death. At baseline, 49% perceived concordance with NH staff on the primary goal, and 69% at follow-up. In multivariate models, choice of comfort as the primary goal, versus other goals, was associated with half as many hospital transfers (0.11 vs. 0.25/90 person-days, confidence interval [−0.2 to −0.01]), but not with hospice or treatment orders. Conclusions: Most families chose comfort as the primary GOC. Further research is needed to translate this preference into comfort-focused treatment plans for late-stage dementia. Clinicaltrials.gov: NCT01565642 (3/26/12).

Older adults with advanced chronic kidney disease (CKD) often have multiple comorbid conditions, a high symptom burden, and limited life expectancy. There is mounting concern that the intensive patterns of care that many of these patients receive at the end of life are discordant with their values and preferences. The nephrology community has recognized that there are significant unmet palliative care needs in this population. In this article, we identify three broad areas of knowledge deficit where more evidence is needed to support the "best care possible" for this population: (1) what matters most to older adults with advanced CKD and their caregivers near the end of life; (2) how the nephrology community can best support older adults with advanced CKD to navigate complex treatment decisions throughout their illness; and (3) how the healthcare system should be reconfigured to promote patient- and family-centered care for older adults with advanced CKD. Research priorities include identifying opportunities for improving the end-of-life experience of older adults with CKD and their caregivers; developing and testing communication interventions before and during dialysis to ensure that treatment decisions reflect patients' preferences; and assessing the effectiveness of palliative care in improving quality of life for patients and caregivers, satisfaction with care, and aligning treatment decisions with patient goals and preferences.

Recent studies suggest that surrogate decision makers may be too optimistic about their end-of-life decision making abilities for loved ones. We examined surrogates' decision making confidence with an emphasis on its linkages to their understandings of patients' values and goals for end-of-life care.We used baseline data from a randomized trial with 58 dyads of African-American dialysis patients and their surrogates who separately completed the Values of Life-Sustaining Treatment Outcomes and the Goals of Care documents. Surrogates also completed a Surrogate Decision Making Confidence Scale.Overall, 60% of surrogates were unsure how their loved ones would feel about continuing life-sustaining treatment, including dialysis, in at least one of the four outcomes presented in the Values of Life-Sustaining Treatment Outcomes. For goals of care near end of life, 67.2% to 69.0% of patients preferred comfort care only, but only 20 (34.5%) surrogates were congruent with patients on Goals of Care. Nonetheless, surrogates' confidence was high (M=3.23 out of 4.0). Surrogates' confidence was positively associated with dyad congruence in values for life-sustaining treatment at only a small magnitude (Spearman's rho=.31, p=.02), but not with dyad congruence in goals of care (χ(2)=2.13, df=1, p=.19).Surrogates' confidence had little association with their actual understanding of patients' values and goals. Interventions to prepare patients and surrogates for end-of-life decision making may need to address overconfidence and help surrogates recognize their limited understanding of patients' values and goals.