Ethical Implications of COVID-19: Palliative Care, Public Health, and Long-Term Care Facilities.

Outbreaks of COVID-19 among nursing homes, assisted living facilities, and other long-term care facilities in the United States have had devastating effects on residents. Restrictions such as banning visitors, sequestering residents, and testing health care staff have been implemented to mitigate the spread of the virus. However, consequences include a decline in mental and physical health, decompensation, and a sense of hopelessness among residents. We present and explore a case study at an assisted living facility addressing the ethical issues in balancing the management of the community versus the resident's right to autonomy and self-determination. A team of palliative care experts was brought into assisted living facilities to manage patients, care for well residents, and provide input in advance care planning and symptom management. The principles of self-determination and autonomy, stewardship, and distributive justice were explored. The use of nursing skills in triage and assessment, principles in public health, and the 8 domains of palliative care provided a comprehensive framework for structuring emergency operations. Palliative interventions and the role of palliative care nurses played an integral part in addressing ethical challenges in the containment of the virus and the deleterious effects of social isolation among the elderly.

[Ethical dimensions of prevention and planning in assisted-living facilities during the SARS-CoV-2 pandemic (Covid-19): a public health emergency.] / Dimensiones éticas de la prevención y planificación en los centros sociosanitarios durante la pandemia por SARS-CoV-2 (Covid-19): una emergencia de salud pública.

The SARS-CoV-2 pandemic (Covid-19) has had a major impact on residents of assisted-living facilities. While it is plausible that the characteristics of these patients and their special clinical fragility have contributed to their greater vulnerability to infection, other related factors cannot be ruled out, such as the quality of management at these centers and the lack of planning for actions taken before and during the health crisis. Both aspects pertain to the field of public health, where the ethics of the common good conflicts with the autonomy of the individual.

La pandemia por SARS-CoV-2 (Covid-19) ha tenido un gran impacto en los residentes de centros sociosanitarios. Es probable que las características de estos pacientes y su especial fragilidad clínica hayan contribuido a una mayor vulnerabilidad a la infección, pero no se pueden descartar otros factores asociados a la misma como son la gestión de los centros y la falta de planificación de las actuaciones antes y durante la crisis sanitaria. Ambos aspectos pertenecen al ámbito de la salud pública, donde la ética del bien común entra en conflicto con la autonomía de las personas.

Understanding the priorities of residents, family members and care staff in residential aged care using Q methodology: a study protocol.

INTRODUCTION: Residential aged care facilities (RACFs) are under increasing pressure to provide high-quality, round the clock care to consumers. However, they are often understaffed and without adequate skill mix and resources. As a result, staff must prioritise care by level of importance, potentially leading to care that is missed, delayed or omitted. To date, the literature on prioritisation and missed care has been dominated by studies involving nursing staff, thereby failing to take into account the complex networks of diverse stakeholders that RACFs comprise. This study aims to investigate the priorities of residents, family members and care staff in order to make comparisons between how care is prioritised in RACFs by the different stakeholder groups. METHODS AND ANALYSIS: This study comprises a Q sorting activity using Q methodology, a think-aloud task, a demographics questionnaire and semi-structured interview questions. The study will be conducted in five RACFs across NSW and QLD, Australia. Using purposive sampling, the project will recruit up to 33 participants from each of the three participant groups. Data from the Q sorting activity will be analysed using the analytic software PQMethod to identify common factors (shared viewpoints). Data from the think-aloud task and semi-structured interviews questions will be thematically analysed using the Framework Method and NVivo qualitative data analysis software. ETHICS AND DISSEMINATION: The study has been approved by St Vincent's Health and Aged Care Human Research and Ethics Committee and Macquarie University Human Research Ethics Committee. It is expected that findings from the study will be disseminated: in peer-reviewed journals; as an executive report to participating facilities and a summary sheet to participants; as a thesis to fulfill the requirements of a Doctor of Philosophy; and presented at conferences and seminars.

Using life history narratives to educate staff members about personhood in assisted living.

Oral life history narratives are a promising method to promote person-centered values of personhood and belonging. This project used resident oral history interviews to educate staff members in an assisted-living setting about personhood. A single group pre-post test design evaluated impacts on 37 staff members to assess their use of resident videotaped oral history interviews and impacts on their perceived knowledge of residents. Perceived knowledge of residents declined (p = .003) between pretest and posttest. Older staff members were less likely to view a video. Staff members are interested in resident oral history biographies and identify them as helpful for delivering care. Oral history methods might provide an opportunity for staff members to promote personhood by allowing them to expand their understanding of resident preferences, values, and experiences.

Ethicted (evaluation process model to improve personalised ICT services for independent living and active ageing)--future scenario.

ICT innovations are constantly developed, and there is no lack of elderly customers, as the number of the elderly is dramatically increasing. Elderly are willing to use ICT to increase their own safety and social activity, but they need trust on the reliability, accessibility and other ethical aspects of ICT including the maintenance of privacy and self-determination. Ethical standards for ICT are usually not considered. "Ethicted" characterizes an ICT service or product as ethically evaluated. As a standardized procedure, it will not only increase the acceptability of ICT, but also provide services for ICT developers. In the future scenario, ICT under development should be evaluated by using a process model that is specifically built to find the lacks in ethical aspects. The model would then be tested by end-users, the formal and informal care givers, to receive direct feedback for redeveloping solutions. As final outcomes, there should be standards for ICT in elderly care and a service for ICT developers to utilize the evaluation model. This future scenario work included partners from 6 EU member countries. The combination of academic research and industrial/commercial interest of ICT developers should and can bring new value to assistive ICT for elderly care.

Estudio Ebrictus. Resultados funcionales, supervivencia y años potenciales de vida perdidos después del primer episodio de ictus / Ebrictus study. Functional results, survival, and potential years of life lost after the first stroke

Objetivo: Conocer la mortalidad, el grado de dependencia, la supervivencia y los años potenciales de vida perdidos (APVP) después de un primer episodio de ictus. Diseño: Estudio de cohorte fija. Emplazamiento: Base comunitaria. Participantes: Entre el 1/4/2006 y el 31/3/2008 fueron incluidas 553 personas entre 15-90 años, con un primer episodio de ictus definitivo o transitorio. Mediciones principales: Grado de dependencia según la escala de Barthel (EB) al año, APVP (1-70 años) a partir de las medias de las esperanzas de vida al nacer, análisis de supervivencia por curvas de Kaplan-Meier, bivariante entre pacientes fallecidos y supervivientes, y multivariante de Cox. Resultados: Edad media, 73,3; DE: 11,6 años. El tiempo medio de seguimiento fue 29,7; DE:13,4 meses, en el que un 26,6% de los pacientes fallecieron. El valor medio EB descendió > 20%, especialmente entre las mujeres. El 41,5% (IC 95% 30,6-52,8%) tenía una dependencia moderada o más. La probabilidad de supervivencia global acumulada fue de 0,96 (IC 95% 0,94-0,97) el primer mes y 0,69 (IC 95% 0,65-0,72) al final. La fibrinólisis mejoró significativamente la curva de supervivencia a los 3 años post-episodio, en particular entre las mujeres. Los factores pronósticos independientes para la supervivencia global fueron la edad (riesgo relativo [RR] 1,08, IC 95% 1,001-1,179) y la incidencia de un nuevo episodio cardiovascular (RR 6,97, IC 95% 2,23-21,7). La tasa de APVP fue 11,5/104, DE 7,2, significativamente mayor en los hombres. Conclusiones: La evolución funcional, la mortalidad y la tasa de APVP son diferentes por género. La incidencia de un nuevo episodio cardiovascular es un factor pronóstico independiente de la supervivencia(AU)

Aim: To determine the mortality, degree of dependence, survival, and years of life lost (YLL) after first episode of stroke. Design: Cohort study. Location: Community based register. Participants: A total of 553 subjects between 15-90 years with a first episode of definitive or transitory stroke were recruited between 01/04/2006 and 31/03/2008.MeasurementsThe analyses were performed with the use of time-to-event methods, according to the intention-to-treat principle. The level of dependency was assessed according to the Barthel Scale one year after stroke; YLL (1-70 years) from the mean life expectancies at birth; survival analysis by Kaplan-Meier's curves, bivariate analysis comparing the variables between patients who had survived and those who died, and Cox's multivariate.: Results: The mean age was 73.3 (±11.6 years. The mean time of follow-up was 29.7±13,4 months, during which 26.6% of the patients died. The mean Barthel score fell by >20%, particularly among women. There was moderate or greater dependence in 41.5% (95%CI 30.6-52.8%) of the subjects. The overall accumulative probability of survival was 0.96 (95% CI 0.94-0.97) in the first month and 0.69 (95% CI 0.65-0.72) in the fourth year. The thrombolytic treatment showed a protective effect on mortality, particularly among the women. The main predictive variables were, history of recurrent cardiovascular event (RR 6.7, 95% CI 2.2-21.7) and aging (RR 1.08, 95% CI 1.01-1.2). The average YLL was 11.5/10000/year SD7.2, and higher among men. Conclusion: There are differences in functional outcome, mortality, and potential years of life lost by gender. A new cardiovascular event is an independent prognostic factor of survival(AU)

Impacto sobre el cuidador principal de una intervención realizada a personas mayores dependientes / Impact on the primary carer of an intervention carried out on depenedent elderly people

Objetivos: Evaluar el impacto de un programa de atención domiciliaria de personas mayores dependientes sobre el cuidador principal.DiseñoEstudio de intervención «antes-después».EmplazamientoAtención primaria.ParticipantesCuidadores principales de personas dependientes mayores de 65 años incluidas en un programa de atención domiciliaria (n=156; 7,8% de pérdidas durante el seguimiento).IntervencionesPrograma de atención domiciliaria de personas mayores dependientes.Mediciones principalesSe realizó una medición basal y una evaluación al año de seguimiento. Se evaluaron la salud percibida, la frecuentación, y la satisfacción con la atención recibida, y se administraron los cuestionarios de calidad de vida de Nottingham, de salud psíquica de Golberg, de apoyo social de Duke-UNC y de sobrecarga del cuidador de Zarit).ResultadosNo se observó una modificación significativa de la salud percibida. Mejoraron (p<0,05) las esferas de energía, sueño, emocional y relación social de la calidad de vida. Disminuyó la frecuentación (8,4 vs 7,5; p<0,05) y el porcentaje de hiperfrecuentadores (30,1% vs 6,9%; p<0,01). Se redujo el porcentaje que expresan escaso apoyo social (8,3 vs 2,8%; p<0,05) y sobrecarga del cuidador (56,4 vs 44,4%; p<0,05). El 90,3% consideran que la asistencia mejoró, con mejora significativa de la asistencia recibida global, médica y de enfermería (7,6 vs 8,4; 7,9 vs 8,5 y 7 vs 8,5; p<0,05).ConclusionesLa incorporación a un programa de atención domiciliaria de personas dependientes repercute positivamente sobre su cuidador principal, mejorando su percepción sobre la asistencia recibida, reduciendo su utilización de los servicios sanitarios, disminuyendo el grado de sobrecarga y su percepción de falta de apoyo social(AU)

Objective: To evaluate the impact of joining a home care program on primary caregivers of dependent elderly people.DesignNon-randomised “before-after” intervention study.SettingPrimary Care.ParticipantsPrimary carers of elderly dependent people included in a home care program (n=156; 7.8% loss to follow up).InterventionsInclusion in a home care program for chronically dependent elderly and the assessment of the primary carer in the same year.Variables assessedperceived health, frequency of visits, questionnaires of quality of life (Nottingham questionnaire), psychological health (Goldberg questionnaire), social support (Duke-UNC scale) and overburden of caregivers (Zarit questionnaire) and satisfaction with care received.ResultsThere were no significant changes in perceived health. Improvement in the areas of energy, sleep, emotional and social relationship of the quality of life. Decreased attendance (8.4 vs. 7.5, p<0.05) and the percentage of overusers (30.1 vs 6.9%, P<.01). A reduced percentage of caregivers expressed low social support (8.3 vs 2.8%, P<.05) and caregiver overburden (56.4 vs 44.4%, P<.05). 90.3% of caregivers believed that care had improved at the end of intervention, with a significant improvement of satisfaction of overall medical and nursing care received (7.6 vs 8, 4, 7.9 vs 8.5 and 7 vs 8.5; P<.05).ConclusionsJoining a home care program for dependents has a positive impact on their primary caregiver and improves their perception of care received, reducing their use of health services, reducing the level of overburden and their perceived lack of social support(AU)

[Facing the challenges of ubiquitous computing in the health care sector]. / Herausforderungen durch ubiquitäres Computing im Gesundheitsbereich.

The steady progress of microelectronics, communications and information technology will enable the realisation of the vision for "ubiquitous computing" where the Internet extends into the real world embracing everyday objects. The necessary technical basis is already in place. Due to their diminishing size, constantly falling price and declining energy consumption, processors, communications modules and sensors are being increasingly integrated into everyday objects today. This development is opening up huge opportunities for both the economy and individuals. In the present paper we discuss possible applications, but also technical, social and economic barriers to a wide-spread use of ubiquitous computing in the health care sector.

Managing everyday ethics in assisted living: a research-based case analysis for the classroom.

This paper presents a complex, but realistic, picture of the lived experience in assisted living (AL), and provokes thoughtful reflection about the operational and ethical challenges faced in the delivery of care to an increasingly frail population in a typical AL facility. Developed from the findings of a two-year qualitative research project, the case represents a composite of selected data collected at five AL facilities that participated in the study. Students will participate in individual and small group exercises that challenge them to identify everyday ethical concerns in AL, and to suggest ways that management can address these issues. The case is suitable for cross-disciplinary use, and can be effectively applied in the fields of management, health care administration, sociology, gerontology, social work, and nursing, either on the graduate or undergraduate level. It is especially well suited to courses that incorporate the topics of long-term care, senior housing, or ethics.

Aprendendo a caminhar na cidade: idosos em residências terapêuticas / Learning to walk in the city: elders in therapeutic residences

O presente estudo é uma pesquisa qualitativa que emprega técnicas do trabalho de campo etnográfico, realizada nos serviços residenciais terapêuticos do Instituto Municipalde Assistência à Saúde Juliano Moreira, com o objetivo de estudar indivíduos idosos portadores de transtornos mentais crônicos que passaram pelo processo de desinstitucionalização. Procura conhecer de que forma estes idosos reconstroem suas relações com o novo território onde passam a circular e com o contexto social aonde vão seinserir, enquanto envelhecem e recriam a vida fora do asilo. De forma a atingi-lo, foram escolhidos, dentre os dispositivos que compõem o programa, 14 residências onde residem idosos. Os 30 indivíduos estudados representam 81 por cento do total de idosos e 36 por cento da clientela do programa, tendo sido observados em seu cotidiano dentro e fora das moradias, em suas relações entre si, com os membros da equipe e com o território, onde re-estabelecem suas redes sociais e recuperam sua capacidade de agir segundo a lógica da reciprocidade nas trocas com outras pessoas. Os dados foram coletados pela observação participante dentro efora das residências, assim como pelas entrevistas abertas, semi-estruturadas, as quais foram gravadas, transcritas e analisadas. Observou-se que os idosos apresentam ganhos em diversos aspectos de suas vidas com relação às trocas sociais e ao domínio sobre o território, mas ainda guardam resquíciosde seu período de institucionalização presentes nas suas rotinas diárias. Notou-se dentro das moradias, a existência de laços sociais baseados na reciprocidade e na ajuda mútua,possibilitando o cuidado e o apoio às necessidades dos idosos mais dependentes...

This work is a qualitative research which employs techniques of ethnographic field work carried out at residential facilities of Instituto Municipal de Assistência à Saúde Juliano Moreira, focusing on elder subjects who have undergone psychiatric deinstitutionalization in search of how they rebuild their relationships in the territory and with their social context in which they live, while they get old and recreate life outside the mental asylum. In order to achieve it, 14 facilities where old people live were chosen among the other residential devices. The 30 elders represent 81% of the total of old people and 36% of the total amount of residents, having been observed in their daily activities inside and outside their houses in their relationships among themselves, other people and with the territory, where they reconstruct their social ties and recover their ability of acting according to the logic of reciprocity and gift. The data were collected by participant observation and open, half-structured interviews, which were recorded, transcribed and analyzed. Observations have shown that elders show improvements in several aspects of their lives but the internment period remains in their daily routines. There are social bonds based on reciprocity and mutual help providing care and social support, especially for the more dependent ones. The stimulus of gift and reciprocity plays a pivotal role on planning residential facilities for elders with mental disorders. Their social networks develop in theneighborhood, accomplishing their roommates and other deinstitutionalized individuals, although neighbors and friends with no connections to the psychiatric institution are increasing their participation. They visit the asylum and circulate well in their surroundings,demanding support from the staff to go to more distant places. Their relation with the territory is an ongoing process, based on each one’s ability...

Ethical issues related to health care: the older adult's perspective.

Although ethical issues in health care receive much publicity, attention is rarely given to the non-dramatic, everyday ethics of health care. This American Nurses' Foundation (ANF) funded pilot study was significant because it was the first to investigate everyday ethical issues from the perspective of older adult health care consumers. The overall goals of this descriptive study were to pilot interview questions and study design, as well as collect preliminary data about the ethical issues older adults in two settings (a residential facility and a non-residential community center) encounter related to health care. A sample of 10 participants answered several open-ended questions in an audiotaped interview; the tape was subsequently transcribed verbatim and analyzed using content analysis methods. Although two open-ended questions were effective in eliciting ethically related health care issues, the addition of specific examples to those questions was suggested. Health care related ethical issues identified by the older adults were categorized as Attentiveness, Respect, Care, Finances, and Health Care Systems. Although the residential participants did not experience financial issues as did the community participants, the highest priority issues for both residential and community participants were in the Attentiveness and Respect categories. The clinical implication of these findings is that nurses best address older adult health care consumers' most important ethical issues by providing attentive, respectful care in all they do.

Everyday ethics in assisted living facilitites: a framework for assessing resident-focused issues.

This article describes and illustrates a framework that may be used when assessing the moral basis of everyday issues that can affect residents of assisted living facilities. The "taxonomy of everyday ethical issues" was an outcome of ethnographic research focused on care of nursing home residents with dementia. However, in this article it is shown to be equally relevant for conceptualizing issues affecting cognitively intact as well as cognitively impaired residents across these two settings. The taxonomy is grounded in some of the more common cultural characteristics of congregate living arrangements for elderly individuals who have needs for varying levels of compensatory and therapeutic oversight by a staff of service providers.