Research on Advance Care Planning in Nursing Homes During the COVID-19 Pandemic

ABSTRACT

Introduction: Staff and the public have limited access to information about advance care planning. Yet, during the pandemic there was an urgency to complete advance care plans (ACP) in long term care facilities (LTCFs) or 'Emergency care plans' which focussed upon future care choices relating to hospital admission and resuscitation status. Materials and Methods: Three studies addressed ACP in care homes Evaluating experiences of LTCFs during the pandemic including their experiences of ACP. Semi-structured interviews with staff (16), community staff (11), residents (3) and families (5) from 11 LTCFs analysed using thematic analysis. International implementation case study of ACP training for staff caring for residents with advanced dementia, which was adapted from in person to asynchronous online training during the pandemic. Evaluation interviews in the UK were conducted with staff (78) and families (34). Bespoke online training and informational resources about advance care planning during COVID-19 was developed for staff and families. Semistructured interviews conducted with families (37) and staff (35) from eight LTCFs. Findings: Staff were concerned about the initiation of ACPs from external agencies and why they were implemented. Staff felt abandoned thinking ACPs meant they were going to be left to manage on their own, adding to their emotional distress. Differences were found between the two training mechanisms, which will be discussed but related to mode of delivery. In study 3, the bespoke training, (https//covidacpcarehomes.com/care-staff/units-training/), was found to be accessible and easier to engage with compared to information from other agencies. Staff felt it gave them permission to engage in these conversations, recognise when a resident gave them cues to have an ACP discussion, when they needed input from senior staff. Staff revised their ACP procedures. Similarly, families felt emboldened to challenge decisions. They shared training with other family members, increasing dissemination. A section on supporting yourself was particularly well evaluated as this met the emotional burden staff and family had identified in study 1. Different implementation challenges were identified in study 2 and 3. Working remotely meant homes need to have appropriate and functioning technology. Building relationships with families was critical and challenging when engaging remotely. Recruiting and establishing meaningful relationships with staff and family carers was critical and challenging in the context of buy-in and willingness to participate. Study 3 involved skilling up staff whereas study 3 involved both skilling up and arranging a family conference, which was less successful perhaps due to the constraints of the pandemic. Conclusion: Whilst advance planning had initially raised concerns for staff, the training helped staff and families' understanding of advance care planning. Bespoke training was particularly well received but involving families remotely was challenging. It is possible for staff to be upskilled and do ACP during a pandemic, but it is difficult, and we need to be aware of the many contextual factors - including how studies can be designed to be workable in difficult circumstances. More research is needed on facilitators and barriers to ACP in LTCF both during a pandemic and more generally.