Isolating residents including wandering residents in care and group homes: Medical ethics and English law in the context of Covid-19.

This article investigates the lawfulness of isolating residents of care and group homes during the COVID-19 pandemic. Many residents are mobile, and their freedom to move is a central ethical tenet and human right. It is not however an absolute right and trade-offs between autonomy, liberty and health need to be made since COVID-19 is highly infectious and poses serious risks of critical illness and death. People living in care and group homes may be particularly vulnerable because recommended hygiene practices are difficult for them and many residents are elderly, and/or have co-morbidities. In some circumstances, the trade-offs can be made easily with the agreement of the resident and for short periods of time. However challenging cases arise, in particular for residents and occupants with dementia who 'wander', meaning they have a strong need to walk, sometimes due to agitation, as may also be the case for some people with developmental disability (e.g. autism), or as a consequence of mental illness. This article addresses three central questions: (1) in what circumstances is it lawful to isolate residents of social care homes to prevent transmission of COVID-19, in particular where the resident has a strong compulsion to walk and will not, or cannot, remain still and isolated? (2) what types of strategies are lawful to curtail walking and achieve isolation and social distancing? (3) is law reform required to ensure any action to restrict freedoms is lawful and not excessive? These questions emerged during the first wave of the COVID-19 pandemic and are still relevant. Although focussed on COVID-19, the results are also relevant to other future outbreaks of infectious diseases in care and group homes. Likewise, while we concentrate on the law in England and Wales, the analysis and implications have international significance.

[Living and dying in community based housing for people with dementia. An exploratory qualitative study]. / Leben und Sterben in Wohngemeinschaften für Menschen mit Demenz. Eine explorative qualitative Studie.

Community based housing for people with dementia is gaining importance. In co-operation between the people concerned, their relatives, professionals and volunteers, person-centred care, nursing and guidance can be realised within small units. Questions regarding end of life, dying, grief and the role of palliative care form the basis of the exploratory qualitative study presented here. Coping with end of life, ethical decisions and the relevance of hospice and palliative care in the field are highlighted. The results of the study show that "shared flats for people with dementia" are good places for death and dying. Close relationships, good communication with relatives and highly motivated professionals can be regarded as powerful resources. So far only few co-operations between hospice and palliative care exist. Areas of improvement encompass clinical issues and coping with bereavement.

Living 'a life like ours': support workers' accounts of substitute decision-making in residential care homes for adults with intellectual disabilities.

In England and Wales, the Mental Capacity Act 2005 (MCA) provides a new legal framework to regulate substitute decision-making relating to the welfare of adults who lack the capacity to make one or more autonomous decisions about their care and support. Any substitute decision made on behalf of an adult lacking capacity must be in his/her 'best interests'. However, the value of adopting established principles and procedures for substitute decision-making in practice is uncertain, and little is known about the legal or ethical dynamics of social care support, including the day-to-day residential support provided to adults with intellectual disabilities (ID). Methods This paper reports a qualitative, grounded theory analysis of 21 interviews with support workers working in residential care homes for adults with ID, and observations of care practices. Results In contrast to the narrow legal responsibilities placed upon them, it is argued that support workers interpret substitute decision-making within a broad moral account of their care role, orientating their support towards helping residents to live 'a life like ours'. In so doing, support workers describe how they draw on their own values and life experiences to shape the substitute decisions that they make on behalf of residents. Conclusions Support workers' accounts reveal clear discrepancies between the legal regulation of substitute decision-making and the ways that these support workers make sense of their work. Such discrepancies have implications both for the implementation of the MCA, and for the role of support workers' values in the conceptualisation and delivery of 'good' care.