Necessary discussions

Professor Kevin Brazil

Professor Kevin Brazil, Professor of Palliative Care School of Nursing and Midwifery, Queen’s University Belfast

Care homes in the UK have been sites for the worst outbreaks of COVID-19. Nursing homes are no strangers to outbreaks, including seasonal influenza and norovirus. COVID-19 is similar to these outbreaks, only more devastating where the condition is more contagious with staff feeling more fearful and isolated.  The role of family carers who act as decision- makers on goals of care at the end of life is complex and can become significantly distressing. This challenge is magnified in the presence of a COVID-19 outbreak.

The health of those who contract COVID-19 can change rapidly, therefore it is vital to know their care preferences in case they are unable to contribute to shared decision-making conversations. The circumstances of COVID-19 therefore necessitated a proactive approach to advance care planning. However, care staff and family members can find these conversations challenging.

Advance care planning (ACP) is a mechanism to support family carers in this decision-making role. 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. While guidance exists to inform the provision of ACP its uptake at the point of care is a complex and challenging endeavor.

To support family carers and care home staff in this challenging circumstance we launched an online COVID-centric advance care planning resource for care home staff and family carers. The aim of this resource is to increase awareness of advance care planning and support shared decision making during a COVID-19 outbreak.

‘Necessary Discussions’, a freely publicly available online resource was developed in partnership with academics from Queen’s University Belfast, the International Observatory on End-of-life Care at Lancaster University, Dementia UK and Marie Curie Hospice, Edinburgh. The resource provides an overview of advance care planning during a COVID-19 outbreak and includes tips and guidance for staff and family members.

Summary of the care staff and family member sections of  ‘Necessary Discussions’

Care staff training Family member information
Unit 1: Introduction to advance care planning in the context of a COVID-19 outbreak 1.What is advance care planning?
Unit 2: Advance care planning in the context of a COVID-19 outbreak 2.Why is advance care planning important during COVID-19?
Unit 3: How to complete an Advance Care Plan during a COVID-19 outbreak 3.What might be included in an advance care plan during COVID-19?
Unit 4: Recording and sharing Advance Care Plans during a COVID-19 outbreak 4.Who takes part in advance care planning during COVID-19?
Unit 5: Finding the words: Tips for having necessary discussions 5.How do I take part in advance care planning during COVID-19?
Unit 6: Caring for yourself during a COVID-19 outbreak 6.How do I care for myself during COVID-19?
Resources Resources


Eight care homes located across Northern Ireland, Scotland and England involving care staff and family members participated in the evaluation of the web-based resource. Care staff reported increased confidence in understanding and conducting advance care planning. Family member feedback showed that the intervention provided a helpful overview of advance care planning.

Necessary Discussions’ represents an important training and information resource for care home staff and family members. Providing this training and information can have immediate tangible impacts on staff confidence and family member involvement, leading to more engaged conversations about planning with practical, documented outcomes. The website can be accessed at: www.covidacpcarehomes.com

Professor Kevin Brazil was the project lead.  The work was co-funded by the Economic and Social Research Council as part of the UK Research and Innovations rapid response to COVID-19, and the Health and Social Care Research and Development Division (HSC R&D Division) of the Public Health Agency in Northern Ireland. 



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