Understanding and addressing challenges for advance care planning in the COVID-19 pandemic : An analysis of the UK CovPall survey data from specialist palliative care services

Bradshaw, A and Dunleavy, Lesley and Walshe, Catherine and Preston, Nancy and Cripps, Rachel and Hocaoglu, Mevhibe and Bajwah, Sabrina and Maddocks, Matthew and Oluyase, Adejoke and Sleeman, K.E. and Higginson, Irene J. and Fraser, Lorna and Murtagh, Fliss (2021) Understanding and addressing challenges for advance care planning in the COVID-19 pandemic : An analysis of the UK CovPall survey data from specialist palliative care services. Palliative Medicine, 35 (7). pp. 1225-1237. ISSN 0269-2163

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Abstract

Background: Specialist palliative care services play an important role in conducting advance care planning during COVID-19. Little is known about the challenges to advance care planning in this context, or the changes services made to adapt. Aim: Describe the challenges that UK specialist palliative care services experienced regarding advance care planning during COVID-19 and changes made to support timely conversations. Design: Online survey of UK palliative/hospice services’ response to COVID-19. Closed-ended responses are reported descriptively. Open-ended responses were analysed using a thematic Framework approach using the Social Ecological Model to understand challenges. Respondents: Two hundred and seventy-seven services. Results: More direct advance care planning was provided by 38% of services, and 59% provided more support to others. Some challenges to advance care planning pre-dated the pandemic, whilst others were specific to/exacerbated by COVID-19. Challenges are demonstrated through six themes: complex decision making in the face of a new infectious disease; maintaining a personalised approach; COVID-19-specific communication difficulties; workload and pressure; sharing information; and national context of fear and uncertainty. Two themes demonstrate changes made to support: adapting local processes and adapting local structures. Conclusions: Professionals and healthcare providers need to ensure advance care planning is individualised by tailoring it to the values, priorities, and ethnic/cultural/religious context of each person. Policymakers need to consider how high-quality advance care planning can be resourced as a part of standard healthcare ahead of future pandemic waves. In facilitating this, we provide questions to consider at each level of the Social Ecological Model.