‘Necessary Discussions’, supporting family carers and staff in advance care planning during a COVID-19 outbreak in a care home

‘Necessary Discussions’, supporting family carers and staff in advance care planning during a COVID-19 outbreak in a care home

Author: Professor Kevin Brazil, Professor of Palliative Care School of Nursing and Midwifery, Queen’s University Belfast, United Kingdom
Date of Publication: February 2022
Keywords: Advance care planning, care homes, nursing homes, online resource

Care home residents and their families have been particularly affected during the COVID-19 pandemic. In the absence of regular visits and communication between families of those in care homes and the staff, it has been challenging to ensure the needs of the residents are met, particularly for residents with limited communication.  The default practice for a COVID-19 outbreak in a care home is to institute familiar infection control practices put in place during other outbreaks.

A tragic, but necessary outcome from standard infection control practice is that 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.

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.

Advance care planning is a process that supports adults at any age or stage of health in understanding and sharing their personal values and preferences regarding future care and realistic treatment choices. Not only does advance care planning enable patients and their families to make informed healthcare decisions, it also supports the delivery of high quality care.

The launch of an online COVID-centric advance care planning resource for care home staff and family carers aims to increase awareness of advance care planning and support shared decision making during a COVID-19 outbreak.

Led by Professor Kevin Brazil *‘Necessary Discussions’, an online resource, was developed in partnership with researchers from Queen’s University Belfast, the International Observatory on End-of-Life Care at Lancaster University, Dementia UK and Marie Curie Hospice, Edinburgh [1]. ‘Necessary Discussions ‘seeks to provide an overview of advance care planning during COVID-19 outbreak and includes tips and guidance for staff and family members.

The resource contains two distinct areas: a training programme for care staff, comprised of units and learning objectives, and an information section for family members. The family member resource, deliberately not labelled as training in an attempt to make it more accessible, was aimed at those with a relative or close friend resident in a nursing home. 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 and support for the resource:

It’s gaining knowledge in something I didn’t have yet, which has now helped me in work. A lot more confident with care plans and everything else.”

It’s given me the confidence to think, yes, this is part of my role…to have this ongoing discussion…The training has given me permission to implement it across the board.”

Family member feedback consistently stated the intervention provided a helpful overview of advance care planning: “It was very comprehensive, it’s very clear and yeah, it’s very relevant.”

It’s the first thing in all the ten years I’ve been involved with the care home…that wants to involve relatives with what’s happening to their resident

Next steps
‘Necessary Discussions” represents an important training and information resource for care home staff and family members regarding advance care planning during a COVID-19 outbreak. Providing this training and information can have immediate tangible impacts on staff confidence and family member involvement, leading to more engaged conversations about advance care planning with practical, documented outcomes. The website can be accessed at: www.covidacpcarehomes.com

It is now important to consider how this intervention can be made available to more care providers and family members to meet the information and support needs of greater numbers of staff, families and residents.

Educational interventions provide learners with the support needed to advance knowledge and skills. Projects such as ‘Necessary Discussions’ and the ‘mySupport study’ aim to engage, support and inform families about advance care planning in care homes with the ultimate goal of providing goal concordant care at end of life.

To learn more about mySupport study watch this 3-minute video. Click on the language of your choice: English | Italian | Czech | Dutch | French Canadian

*Funders: 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. 


[1] Harding, A., Preston, N., Doherty, J. et al. Developing and evaluating online COVID-centric advance care planning training and information resources for nursing staff and family members in nursing homes: the necessary discussions study protocol. BMC Geriatr 21, 456 (2021). https://doi.org/10.1186/s12877-021-02398-1

Meet the author:

Professor Brazil holds the appointment of Professor of Palliative Care in the School of Nursing and Midwifery, Queen’s University Belfast. He is a Fellow in the Centre of Social Innovation and Evidence, Queen’s University Belfast. He holds an honorary appointment in the Department of Health Research Methods, Evidence, and Impact, Faculty of Health Sciences, McMaster University, Hamilton, Ontario Canada. Professor Brazil’s research focuses on the structure, process, and outcomes in service delivery of quality care for family carers and patients as they near the end-of-life. This work assists in the development, evaluation and translation of new and innovative interventions to improve access, quality and outcomes in this population. He has over 300 publications including 187 peer review journal publications related to these interests. He has been active on working and advisory groups at the international and national levels and has served on grant review boards in both Canada and Europe.