BackgroundOlder adults with complex care needs face trade-offs in determining the right course of treatment. The Centers for Medicare and Medicaid Services identified ‘Care is personalized and aligned with patient’s goals’ as a key meaningful measures category, yet existing quality measures typically assess disease-specific care and may not effectively evaluate what is most important to older adults and family members. Measures based on individualised goals and goal-based outcomes have been proposed as an alternative but are not routinely assessed or implemented.ObjectivesWe tested two approaches to assessing goal-based outcomes that allow individuals to set goals based on their own priorities and measure progress—(1) goal attainment scaling and (2) existing, validated patient-reported outcome measures (PROM).MethodsA prospective cohort study of feasibility in seven sites (33 clinicians) of the two approaches with 229 individuals. We calculated performance on a measure of achievement of individually identified goals.ResultsBoth approaches were successfully implemented in a non-randomly selected population, and a goal-based outcome could be calculated for 189 (82%) of participants. Most individuals met their goal-based outcome (73%) with no statistical difference between the goal attainment scaling approach (74%) and the patient-reported outcomes approach (70%). Goals were heterogeneous ranging from participating in activities, health management, independence and physical health. Clinicians chose to use goal attainment scaling (n=184, 80%) more often than PROMs (n=49, 20%) and rated the goal attainment scaling approach as useful for providing patient care.ConclusionGoal-based outcomes have the potential to both improve the way healthcare is provided and fill a critical gap in value-based payment.

Purpose: The purpose of the study is to capture goals expressed by older adults with functional limitations and their caregivers. Methods: Through focus groups and interviews, 76 older adults with ≥1 activity of daily living limitation and 28 family/friend caregivers were asked about what mattered most to them and their goals for care. Transcripts were coded using an existing taxonomy. Goals that did not fit the taxonomy were assigned new codes. Results: We identified more than 50 goals in eight domains. Domains included (a) Medical Care; (b) Quality of Life: Physical; (c) Quality of Life: Social and Emotional; (d) Access to Services and Supports; (e) Caregiver Needs and Concerns; (f) End of Life; (g) Independence; and (h) Acceptable Housing. Conclusion: While there is overlap between identified goals and the existing taxonomy, new goals emerged. The goal domains identified could serve as a framework to improve and measure the quality of goal-oriented care for older adults with complex needs.

Background Assess the feasibility of using goal attainment scaling (GAS) in care planning for older adults with complex needs. GAS is an individualized approach to goal setting and follow up using a quantified scale. To date, little is known about the feasibility of GAS among this population. Methods We conducted a qualitative study with a sample of 28 older adults and 23 providers from diverse settings to evaluate the value and challenges of this approach. We conducted semi-structured interviews and iteratively coded and analyzed interview transcripts for themes related to value, challenges, and implementation. Results Most older adults and providers reported that the GAS approach added value to the care encounter. GAS supported collaboration and patient accountability for their goals, though it could be demotivating to some patients. Some older adults and providers noted that GAS could be confusing and that it was uncomfortable to talk about negative outcomes (i.e., the − 2 and − 1 boxes of the scale). Factors that facilitated implementation included using visual copies of the GAS forms, having an established patient-provider relationship, practicing the approach, and having previous goal-related clinical training. Conclusions GAS was feasible to implement across diverse settings, and, despite challenges, both older adults and providers reported that it added value to care planning encounters with the potential to improve delivery of person-centered care. Further efforts to demonstrate the applicability and benefit of this method for older adults are warranted, particularly to address implementation of the approach.

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Objectives Some observers have proposed that physicians may die differently compared with the average patient. Semi-structured interviews with family members of physicians who died offer an opportunity to better understand how patient preferences and wishes are perceived and acted on by family members at the end of life. The decision-making experiences of these family members for a loved one who was a physician may have implications for the lay person at end of life. Methods The Johns Hopkins Precursors Study includes individuals who matriculated into the graduating classes of 1948 to 1964 of the Johns Hopkins University School of Medicine. From this cohort, we interviewed 26 family members of physicians who died. Interviews were coded and analyzed using a comparative, iterative process. Results We found that family members of physicians who died described the uncertainty at end of life. This overarching theme was organized into the following: (a) the certainty of uncertainty; (b) the preparation for uncertainty; and (c) brokering of decisions in the face of uncertainty. Despite careful end-of-life preparation by well-informed physicians, family members were still left to broker decisions as they navigated the wishes of the physician and what the family and medical care team believed to be in the best interest of the physician. Significance of results Our findings suggest that our family members were not immune to uncertainty. The clinical momentum at the end of life may contribute to challenges faced by patients and family members when brokering decisions. Normalizing uncertainty in medical training and for families may aid in addressing the stress of uncertainty at end of life.

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