Background Despite increasing interest in advance care planning (ACP) and prior ACP descriptions, a consensus definition does not yet exist to guide clinical, research, and policy initiatives. Objective To develop a consensus definition of ACP for adults. Design Delphi Panel Setting/Participants Participants included a multidisciplinary panel of international ACP experts consisting of 52 clinicians, researchers, and policy leaders from 4 countries, and a patient/surrogate advisory committee. Measurements We conducted 10 rounds of a modified Delphi method and qualitatively analyzed panelists’ input. Panelists identified several themes lacking consensus, and iteratively discussed and developed a final consensus definition. Results Panelists identified several tensions concerning ACP concepts such as whether the definition should focus on conversations vs. written advance directives; patients’ values vs. treatment preferences; current shared decision making vs. future medical decisions; and who should be included in the process. The panel achieved a final consensus one-sentence definition and accompanying goals statement: “Advance care planning is a process that supports adults at any age or stage of health in understanding and sharing their personal values, life goals, and preferences regarding future medical care. The goal of advance care planning is to help ensure that people receive medical care that is consistent with their values, goals and preferences during serious and chronic illness.” The panel also described strategies to best support adults in ACP. Conclusions A multidisciplinary Delphi panel developed a consensus definition for ACP for adults that can be used to inform implementation and measurement of ACP clinical, research, and policy initiatives.
Increasing numbers of older, community-dwelling adults have functional impairments that prevent them from leaving their homes. It is uncertain how many people who live in the United States are homebound.OBJECTIVES To develop measures of the frequency of leaving and ability to leave the home and to use these measures to estimate the size of the homebound population in the US population. DESIGN, SETTING, AND PARTICIPANTS Cross-sectional data from the National Health and Aging Trends Study collected in 2011 in the contiguous United States. Participants were a nationally representative sample of 7603 noninstitutionalized Medicare beneficiaries 65 years and older. MAIN OUTCOMES AND MEASURESWe defined homebound persons as those who never (completely homebound) or rarely (mostly homebound) left the home in the last month. We defined semihomebound persons as those who only left the home with assistance or had difficulty or needed help leaving the home. We compared demographic, clinical, and health care utilization characteristics across different homebound status categories. RESULTSIn 2011, the prevalence of homebound individuals was 5.6% (95% CI, 5.1%-6.2%), including an estimated 395 422 people who were completely homebound and 1 578 984 people who were mostly homebound. Among semihomebound individuals, the prevalence of those who never left home without personal assistance was 3.3% (95% CI, 2.8%-3.8%), and the prevalence of those who required help or had difficulty was 11.7% (95% CI, 10.9%-12.6%). Completely homebound individuals were more likely to be older (83.2 vs 74.3 years, P < .001), female (67.9% vs 53.4%, P < .006), and of nonwhite race (34.1% vs 17.6%, P < .001) and have less education and income than nonhomebound individuals. They also had more chronic conditions (4.9 vs 2.5) and were more likely to have been hospitalized in the last 12 months (52.1% vs 16.2%) (P < .001 for both). Only 11.9% of completely homebound individuals reported receiving primary care services at home. CONCLUSIONS AND RELEVANCEIn total, 5.6% of the elderly, community-dwelling Medicare population (approximately 2 million people) were completely or mostly homebound in 2011. Our findings can inform improvements in clinical and social services for these individuals.
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