This article proposes an action guide to making decisions regarding the ethical allocation of resources that affect access to healthcare services offered by community-based healthcare organizations. Using the filter of empirical data from a study of decision making in two community-based healthcare organizations, we identify potentially relevant conceptual guidance from a review of frameworks and action guides in the public health, health policy, and organizational ethics literature. We describe the development of this action guide. We used data from a prior empirical study of the values that influence decision making about the allocation of resources in particular types of community-based healthcare organizations. We evaluated, organized, and specified the conceptual guidance we found in 14 frameworks for ethical decision making. The result is an action guide that includes four domains that are relevant to the context of the decision to be made, eight domains that are relevant to the process of the decision to be made, and 15 domains that are relevant to the criteria of the decision to be made. We demonstrate the potential use of this action guide by walking through an illustrative resource allocation decision. The action guide provides community-based healthcare organizations with a conceptually grounded, empirically informed framework for ethical decision making.

Background

Homebound older adults have heightened risks for isolation and negative health consequences, but it is unclear how COVID-19 has impacted them. We examine social contact and mood symptoms among previously homebound older adults during the COVID-19 pandemic.

Design/setting

Cross-sectional analysis using data from the National Health and Aging Trends Study (NHATS), a nationally-representative longitudinal study of aging in the USA.

Participants

A total of 3,112 community-dwelling older adults in 2019 who completed the COVID-19 survey in the summer/fall of 2020.

Measurements

Homebound status was defined via self-report as rarely/never leaving home or leaving the house with difficulty or help in the prior month. We measured limited social contact during COVID-19 (in-person, telephone, video or email contacts ResultsAmong homebound older adults, 13.2% experienced limited social contact during COVID-19 vs. 6.5% of the non-homebound. Differences in social contact were greatest for contacts via email/text/social media: 54.9% of the homebound used this DiscussionIsolation among homebound older adults increased during COVID-19, partially due to differences in technology use. We must ensure that homebound persons have the connection and care they need including new technologies for communication during and beyond COVID-19.

Background: In the United States, 45% of people enrolled in hospice have dementia. We know little about how hospice professionals facilitate preference-aligned end-of-life care for people with dementia (PWD) and their families. Objective: To examine hospice stakeholders' perspectives on caring for PWD and their families. Design: Multisite qualitative study using semi-structured interviews with interdisciplinary hospice clinicians, leaders, and administrators. The interdisciplinary team used the constant comparative method to identify, code, and characterize relevant themes. Setting/participants: Four geographically distinct nonprofit U.S. hospice organizations. Fifty-one hospice employees: 61% clinical staff, 25% executive leaders, and 14% administrators. Measurements: Interview domains included participants' practices of engaging patients/families in discussions of preferences for end-of-life care and professional opinions of changes over time. Cross-topic probes focused on delivering hospice care to PWD and their proxies/families. Results: Four themes regarding caring for PWD in hospice. (1) Dementia prevalence in hospice is increasing and some hospices are developing programs to accommodate specific needs. (2) Setting impacts discussions of preferences and care decisions. (3) Caring for PWD on hospice poses unique challenges caused by (i) perceptions that dementia is not terminal, (ii) a lack of advance care planning discussions before hospice admission, and (iii) proxy decision-makers who were inadequately prepared for their role. (4) Hospice regulatory and policy changes disproportionately impact PWD. Conclusions: Hospice professionals perceive increasing demand for, and multilevel challenges to, caring for PWD. Clinicians "upstream" from hospice may help by engaging patients and proxies in discussions of preferences for end-of-life care and providing anticipatory guidance.

Physician-assisted death is now legal in California, and similar laws are being considered in many other states. The California law includes safeguards, yet health care providers will face practical and ethical issues while implementing physician-assisted death that are not addressed by the law. To help providers and health care facilities in California prepare to provide optimal care to patients who inquire about physician-assisted death, we brought together experts from California, Oregon, and Washington. We convened a conference of 112 stakeholders in December 2015, and herein present their recommendations. Themes of recommendations regarding implementation include (1) institutions should develop and revise physician-assisted death policies; (2) legal physician-assisted death will have implications for California's culturally and socioeconomically diverse population, and for patients from vulnerable groups; (3) conscientious objection and moral distress for health care providers must be considered; and (4) palliative care is essential to the response to the law. The expert conference participants' insights are a valuable guide, both for providers and health care facilities in California planning or revising their response, and for other jurisdictions where physician-assisted death laws are being considered or implemented.

Background

Home clinical care (HCC) includes home-based medical care (HBMC-medical visits in the home) and skilled home health care (skilled nursing or therapy visits). Over 7 million older adults would benefit from HCC; however, we know surprisingly little about homebound older adults and HCC.

Objective

To describe HCC received by older adults using claims data within the OptumLabs Data Warehouse.

Research design

Using administrative claims data for commercial and Medicare Advantage enrollees, we describe morbidity profiles, health service use, and care coordination (operationalized as care plan oversight [CPO]) for people receiving HCC and the subgroup receiving HBMC.

Participants

Three million adults (3,027,247) age ≥65 with 12 months of continuous enrollment 2013-2014.

Measures

CPT or HCPCS codes delineated HCC, HBMC, and CPO recipients and care site, frequency, and provider type. Other measures included demographic characteristics, clinical characteristics, and health care utilization.

Results

Overall, 5% of the study population (n=161,801) received 2+ months of HCC visits; of these, 46% also received 2+ HBMC visits (n=73,638) while 54% received only skilled home health (n=88,163 HCC but no HBMC). HBMC-recipients had high comorbidity burden (Charlson score 4.3), dementia (35%), and ambulance trips (58%), but few nursing facility admissions (4.9%). Evidence of care coordination (CPO claims) occurred in 30% of the HCC population, 46% of HBMC, and 17% of the skilled home health care only.

Conclusions

Approximately 1 of 20 older adults in this study received HCC; 30% or less have a claim for care coordination by their primary care provider.

Due to the high costs of providing long-term care to older adults with cognitive impairment, artificial companions are increasingly considered as a cost-efficient way to provide support. Artificial companions can comfort, entertain, and inform, and even induce a sense of being in a close relationship. Sensors and algorithms are increasingly leading to applications that exude a life-like feel. We focus on a case study of an artificial companion for people with cognitive impairment. This companion is an avatar on an electronic tablet that is displayed as a dog or a cat. Whereas artificial intelligence guides most artificial companions, this application also relies on technicians "behind" the on-screen avatar, who via surveillance, interact with users. This case is notable because it particularly illustrates the tension between the endless opportunities offered by technology and the ethical issues stemming from limited regulations. Reviewing the case through the lens of biomedical ethics, concerns of deception, monitoring and tracking, as well as informed consent and social isolation are raised by the introduction of this technology to users with cognitive impairment. We provide a detailed description of the case, review the main ethical issues and present two theoretical frameworks, the "human-driven technology" platform and the emancipatory gerontology framework, to inform the design of future applications.

More than 6 million adults in the United States are homebound or semi-homebound and would benefit from home-based medical care (HBMC). There is currently no nationally recognized quality of care framework for home-based medical care. We sought to capture diverse stakeholder perspectives on the essential aspects of quality HBMC and create a quality of care framework for homebound adults. A qualitative analysis of semistructured interviews from purposive sampling of key HBMC stakeholders was performed. Leaders from 12 exemplar HBMC practices (clinicians and administrators), advocacy groups (American Association of Retired Persons, National Partnership for Women and Families, Kaiser Family Foundation), and representatives from 3 key professional medical societies associated with HBMC participated in phone interviews. Semistructured interviews were based on domains of quality developed by the National Quality Forum (NQF) for individuals with multiple chronic conditions. We identified 3 categories of quality HBMC: provider and practice activities; provider characteristics; and outcomes for patients, caregivers, and providers. Within these 3 categories, we identified 10 domains and 49 standards for quality HBMC. These included 3 new domains (comprehensive assessment, patient/caregiver education, and provider competency) as well as specification and adaptation of the NQF Framework for Multiple Chronic Conditions domains for HBMC. Notably, several quality domains emanating from the NQF Framework for Multiple Chronic Conditions (transitions, access, and patient/caregiver engagement) were applicable to HBMC. This quality of care framework serves as a guide for HBMC practices seeking to improve their care quality and as a starting point for health systems and payers to ensure value from HBMC practices with whom they work.

The Medicare hospice benefit was originally designed around a cancer disease paradigm but increasingly serves people living with dementia. At this time, almost half of all older adults receiving hospice care have dementia. Yet there is minimal evidence as to whether hospice benefits people living with dementia outside of nursing facilities. We asked whether and how the perceived quality of last-month-of-life care differed between people with and without dementia and whether hospice use among people living with dementia was associated with perceived quality of care compared with the quality of care for those who did not use hospice. We used nationally representative data from the National Health and Aging Trends Study and Medicare claims from the period 2011-17 to examine the impact of hospice enrollment on proxy perceptions of last-month-of-life care quality. Proxies of people living with dementia enrolled in hospice compared with proxies of those not enrolled more often reported care to be excellent (predicted probability: 52 percent versus 41 percent), more often reported having anxiety or sadness managed (67 percent versus 46 percent), and less often reported changes in care settings in the last three days of life (10 percent versus 25 percent). There were no differences in the impact of hospice on proxy ratings of care for people with and without dementia. Policy makers should consider these benefits when weighing changes to hospice policy and regulations that may affect people living with dementia.