New study: Advance care planning for nursing homes in a COVID-19 outbreak, necessary discussions

Andrew Harding, Lancaster University (UK)

It is likely that nursing homes in the UK will become clusters in their communities for the worst clinical manifestations of COVID-19. Nursing homes are no strangers to outbreaks, including seasonal influenza and norovirus.  The COVID-19 pandemic will be similar to these outbreaks, only more devastating where the condition is more contagious with staff feeling more fearful and isolated.  Nursing home residents are typically older adults with multiple co-morbidities and decreased functional abilities. As such, they are particularly susceptible to severe complications and mortality from COVID-19.

Nursing homes default practice for a COVID-19 outbreak is to institute familiar infection control practices put in place during other outbreaks.  A tragic, but necessary outcome from this practice is that similar to hospitals nearly all visitors to facilities are prohibited. Although this is an important infection control step, it imposes a significant social and emotional cost for both isolated residents and their family carers.

Since all nursing home residents are at substantial risk, nursing home care staff need to know what residents would want to happen should they become infected with COVID-19. A COVID-19 case can accelerate over a few hours or a couple of days.This requires that a nursing home carry out a substantial number of sensitive discussions quickly.  As these conversations will transpire while the nursing home is in quarantine, discussions involving family carers will ensure over the telephone or other technology.

The role of family carers who act as decision-makers on goals of care at the end of life is complex and can become a significant burden. Many feel unprepared to make the many difficult and emotionally distressing choices about whether or not to proceed with a life sustaining treatment. Advance Care Planning (ACP) is a mechanism to support family carers in this decision-making role. It has gained increased importance in the UK after being recommended by the UK National End of Life Strategy (2008). ACP describes the discussion between an individual, family and care providers where it is set on record the choices or decisions relating to care at the end of life. Research reveals that nursing home staff are reluctant to discuss end-of-life care. However, there is evidence to suggest that training increases both competence and confidence in this area.

The aim of this project is to adapt existing ACP guidance into a format that is accessible and acceptable to nursing home staff, residents and family carers of residents in nursing homes, within a social distancing environment. The study will develop and evaluate ACP Covid-19 centric online resources and implementation guidelines based on data collection with a number of nursing home case study sites across the UK (Norther Ireland, Scotland and England). This 15 month project (June 2020 – September 2021) received funding from the Economic and Social Research Council (ESRC).

If you would like to know more, are a nursing home manager who is interested in participating as a case study site, or wish to discuss any aspect of this project we would love to hear from you.


Professor Kevin Brazil, Primary Investigator, Queen’s University Belfast –

Dr Gillian Carter, Co-Investigator, Queen’s University Belfast –

Dr Adrienne McCann, Co-Investigator, Queen’s Univeristy Belfast –

Dr Gary Mitchell, Co-Investigator, Queen‘s University Belfast –

Dr Julie Doherty, Researcher, Queen’s University Belfast –

Dr Anne Finucane, Co-Investigator, Marie Curie Hospice, Edinburgh –

Professor Nancy Preston, Co-Investigator, Lancaster University –

Dr Andrew Harding, Co-Investigator, Lancaster University –

Dr Sandra Varey, Researcher, Lancaster University –

Dr Emily Cousins, Researcher, Lancaster University –

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