TY - JOUR

T1 - Understanding and addressing challenges for Advance Care Planning in the COVID-19 pandemic

T2 - An analysis of the UK CovPall survey data from specialist palliative care services.

AU - Bradshaw, Andrew

AU - Dunleavy, Lesley

AU - Walshe, Catherine

AU - Preston, Nancy

AU - Cripps, Rachel

AU - Hocaoglu, Mevhibe

AU - Bajwah, Sabrina

AU - Oluyase, Adejoke

AU - Maddocks, Matthew

AU - Sleeman, Katherine

AU - Higginson, Irene

AU - Fraser, Lorna

AU - Murtagh, Fliss

PY - 2020/10/30

Y1 - 2020/10/30

N2 - Background: During the COVID-19 pandemic, specialist palliative care services have an important role to play conducting high-quality and individualised Advance Care Planning discussions. Little is known about the challenges to Advance Care Planning in this context, or the changes services have made in adapting to them. Aim: To describe the challenges experienced, and changes made to support, Advance Care Planning at the height of the COVID-19 pandemic. Design: Cross-sectional on-line survey of UK palliative and hospice services response to COVID-19. Closed-ended responses are reported descriptively. Open-ended responses were analysed using a thematic Framework approach. Respondents: 277 UK palliative and hospice care services. Results: 37.9% of services provided more Advance Care Planning directly. 58.5% provided more support to others. Some challenges to Advance Care Planning pre-dated the pandemic, whilst other were COVID-19 specific or exacerbated by COVID-19. Six themes demonstrated challenges at different levels of the Social Ecological Model, including: complex decision making in the face of a new disease; maintaining a personalised approach; COVID-specific communication difficulties; workload and pressure; sharing information; and national context of fear and uncertainty. Two themes demonstrate changes made to support Advance Care Planning, including: 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, and religious context of each person. Policymakers need to consider carefully how high-quality, person-centred Advance Care Planning can be resourced as a part of standard healthcare ahead of future pandemic waves.

AB - Background: During the COVID-19 pandemic, specialist palliative care services have an important role to play conducting high-quality and individualised Advance Care Planning discussions. Little is known about the challenges to Advance Care Planning in this context, or the changes services have made in adapting to them. Aim: To describe the challenges experienced, and changes made to support, Advance Care Planning at the height of the COVID-19 pandemic. Design: Cross-sectional on-line survey of UK palliative and hospice services response to COVID-19. Closed-ended responses are reported descriptively. Open-ended responses were analysed using a thematic Framework approach. Respondents: 277 UK palliative and hospice care services. Results: 37.9% of services provided more Advance Care Planning directly. 58.5% provided more support to others. Some challenges to Advance Care Planning pre-dated the pandemic, whilst other were COVID-19 specific or exacerbated by COVID-19. Six themes demonstrated challenges at different levels of the Social Ecological Model, including: complex decision making in the face of a new disease; maintaining a personalised approach; COVID-specific communication difficulties; workload and pressure; sharing information; and national context of fear and uncertainty. Two themes demonstrate changes made to support Advance Care Planning, including: 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, and religious context of each person. Policymakers need to consider carefully how high-quality, person-centred Advance Care Planning can be resourced as a part of standard healthcare ahead of future pandemic waves.

U2 - 10.1101/2020.10.28.20200725

DO - 10.1101/2020.10.28.20200725

M3 - Journal article

JO - medRxiv

JF - medRxiv

ER -