Using the Social Ecological Model, our findings demonstrate how the COVID-19 pandemic exacerbated already-existing challenges to conducting high-quality and timely ACP. At the individual level, the main challenge was maintaining an individualised approach ⁽¹³⁾ and making complex decisions in the face of extreme clinical uncertainty ^{(13, 14, 28)}. At the within- and between-teams level, racing against rapid deterioration ^(29-31) and sharing of ACP-related information ^{(13, 32)} were reported as challenging. Though clinical uncertainty about COVID-19 had similarities to other critical illnesses, ⁽³²⁾ the depth of uncertainty in a disease of which almost nothing was known was of a different order in this pandemic, bringing unique challenges to ACP.

This study shows how COVID-specific challenges made delivering high quality ACP difficult. These occurred at individual (limiting choices of place of care/death), interpersonal (COVID-specific communication difficulties), within-teams (a rapid increase in the volume of ACPs combined with sudden decrease in staff/services) and national (delivering ACP in a national context of fear and uncertainty) levels. The Social Ecological Model illuminated how a national context of fear provided a contextual backdrop through which the various challenges are better understood. These worries may be viewed through the ‘four horsemen of fear’ concept ⁽³³⁾ in which COVID-19 precipitated bodily, interpersonal, cognitive, and behavioural fears. These fears were brought into ACP conversations by patients, and their families, and health professionals, disrupting their ability to engage in ACP conversations as effectively as they would have liked.

In adapting to these challenges, services made changes to structures and processes of care. There is already evidence of the benefits of some of these, such as having earlier ACP discussions^{(13, 34)} and training aimed at facilitating healthcare professionals’ skills/confidence in communicating ACPs. ^(35-37) Recent work has also demonstrated the feasibility and effectiveness of having virtual discussions with patients/families during COVID-19, ^{(38, 39)} and resources have been developed to support healthcare professionals to navigate the challenges and sensitivities of virtual difficult conversations. ^(40-42)

However, some changes induced by the pandemic, such as reducing ACP to specific components were less helpful. This is because ACP is a multi-component process, not a one-time event/document, not least because preferences and priorities may change. ^{(6-8, 10, 12, 34, 43-46)} Delivering all of the multiple components of ACP, and delivering them well, is important to ensure inclusive, holistic, and individualised care that focuses on what matters most to patients. ⁽⁴⁷⁾ Whilst understandable in the pandemic context, emphasis on discrete components of ACP may jeopardise the individualised and holistic qualities essential for the delivery of high quality and comprehensive ACP, and runs the risk of making ACP a ‘tick box exercise focused on a predetermined list of preferences’.⁽⁴³⁾ This is a concern raised by the public and clinical communities. ^{(43, 48, 49)}

Considerations for clinical practice and policy

COVID-19 has provided an opportunity to re-think ACP in which the starting point to any discussion is always the values and priorities of patients themselves. Initially, these discussions are likely to be broad in nature, with their focus then narrowing in line with the more immediate concerns of individuals. ⁽⁴⁷⁾

Some changes to support ACP were temporary and may be dropped post-pandemic (such as shifting of resources and focusing on specific components of ACP), but innovative changes that showed promise may be amplified and sustained. Changes such as learning fast through collaboration, training to support ACP, the integration of ACP into everyday clinical practice, and use of virtual technology are important to maintain as the need for palliative care is estimated to rise considerably ⁽¹⁸⁾ and need for ACP will not be met by specialists alone. ^(50-52) In facilitating these changes, Table 4 provides questions for health professionals and policymakers – in the UK and beyond - to consider when conducting ACP during a pandemic and in clinical practice more generally. Most importantly, policymakers in any given country need to consider how high-quality ACP can be resourced as a part of standard care.