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

Abstract

AbstractBackgroundDuring 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.AimTo describe the challenges experienced, and changes made to support, Advance Care Planning at the height of the COVID-19 pandemic.DesignCross-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.Respondents277 UK palliative and hospice care services.Results37.9% 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.ConclusionsProfessionals 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.Key StatementsWhat is already known about the topic?–An important part of palliative care’s response to COVID-19 is ensuring that Advance Care Planning discussions occur with patients and their care networks–High quality Advance Care Planning is viewed as a process that adopts a holistic, collaborative, and individualised approach–Prior to COVID-19, challenges to Advance Care Planning included time constraints, lack of training, fears of taking away hope, limited resources, and insufficient knowledgeWhat this paper adds?–The COVID-19 pandemic exacerbated already-existing challenges to conducting high-quality, individualised Advance Care Planning, including the ability to maintain a personalised approach and sharing information between services–COVID-specific challenges to Advance Care Planning exist, including the complexities of decision-making for a novel disease, communication issues, and workload pressures–In responding to these challenges, services adapted local processes (prioritising specific components, normalisation and integration into everyday practice) and structures (using technology, shifting resources, collaboration) of careImplications for practice, theory or policy–COVID-19 has provided an opportunity to re-think Advance Care Planning in which the starting point to any discussion is always the values and priorities of patients themselves–Providers and policymakers need to urgently consider how high-quality Advance Care Planning can be resourced and normalised as a part of standard care across the health sector, ahead of future or recurrent pandemic waves and in routine care more generally–We provide questions for health professionals, services, and policy makers to consider in working towards this