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ObjectivesSome 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.MethodsThe 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.ResultsWe 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 resultsOur 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.

Context Patients and family caregivers perceive burden in care at the end of life differently even when the patient is a physican. . Objective We describe how older adult physicians as prospective patients (hereafter “physician-patients”) and family caregivers of physician-patients view burden in care at the end of life. Methods Interviews with physician-patients (N=28) and family caregivers (N=26) of physician-patients who had died were conducted as part of a shared decision-making study. Both groups expressed concerns with burden at the end of life. We coded and analyzed descriptions of burden using inductive and deductive approaches to coding sub-themes as in qualitative description. We then created a conceptual model depicting the relationships among the concepts, returning to the interviews to verify respective contexts. Results Unilateral actions taken at different points in the illness trajectory by both groups suggested different concerns about burden occurring in parallel. While everyone anticipated burden associated with care at the end of life, physician-patients made legal and financial arrangements to minimize this burden. Nevertheless several family caregivers described the burden that they experienced. We propose a conceptual model to guide future research and care. Conclusions Physician-Patients ‘ clinical insights drive their attempts to alleviate burden on their families. However, family caregivers still experienced burden. Recognizing the parallel perspectives of burden may inform the type and timing of interventions to effectively minimize burden and provide compassionate care to both patients and families at the end of life.

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.

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.

Direction of regard, face expressions, movements of the hands and how they are oriented or aimed, and rhythms and tone of voice all give evidence of emotions. In trying to obtain richer data on the development of infants long before a diagnosis of autism is possible, researchers have resorted to analysis of home videos in which parents have recorded their infants in various activities and games. A search for signs of autism will be more fruitful if direct attention is given to the expressions of motives and emotions and to how they regulate communication in familiar situations, between infants and those persons they know best. "In development, the affective system is the means of regulating joint exchanges". The ability of an autistic child to regulate such exchanges of emotion, which guide the development of knowledge and skills in communication, is clearly deficient.

Healthcare quality measures aim to evaluate providers and health plans so that consumers can make informed decisions on aspects of quality that matter most to them. Yet, most existing quality measures are based on a narrow set of health outcomes and do not effectively evaluate outcomes that are important to individuals themselves. This “one-size-fits-all” approach to measurement is particularly misaligned when evaluating care for older adults with complex needs. This population—including those with functional limitations, comorbidities, or both—frequently requires services and supports that extend beyond traditional medical care, and choices about treatment options that require complicated calculations of tradeoffs. To address the need for quality measures that reflect what matters most to individuals, we tested two approaches to personalized goal setting: goal attainment scaling (GAS) and person-reported outcome measures (PROM). Across six organizations, 34 clinicians (including physicians, nurse practitioners, registered nurses, and social workers) piloted the approaches with 232 older adults (GAS n=184; PROM n=49). Results demonstrate that older adults articulated a range of personalized outcomes important to them but not captured through current quality measures. Quantitative analyses show that on average 73% of older adults in the study with follow-up achieved the personalized goal they had selected over six months, but also revealed variation in achievement rates across organizations (range: 56–100%). Qualitative results highlight that despite the greater initial perceived workload, providers and older adults preferred the individualized GAS approach to the more structured PROM approach. GAS proved feasible for quality measurement across diverse settings of care.