Advance care planning re-imagined: a needed shift for COVID times and beyond

Abel, Julian; Kellehear, Allan; Sanders, Catherine Millington; Taubert, Mark; Kingston, Helen

doi:10.1177/2632352420934491

Cited by 35 publications

(53 citation statements)

References 22 publications

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“…[6][7][8]9,10,12,36,[45][46][47] Delivering all of the multiple components of advance care planning, and delivering them well, is important to ensure inclusive, holistic, and individualised care that focuses on what matters most to patients. 48 Whilst understandable in the pandemic context, emphasis on discrete components of advance care planning may jeopardise the individualised and holistic qualities essential for the delivery of high quality and comprehensive advance care planning, and runs the risk of making advance care planning a 'tick box exercise focused on a predetermined list of preferences'. 45 This is a concern raised by the public and clinical communities.…”

Section: Discussionmentioning

confidence: 99%

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

et al. 2021

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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.

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Section: Discussionmentioning

confidence: 99%

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

et al. 2021

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“…Barriers to a higher uptake of ACP include scepticism about wishes being respected(32), social grade(33), communication skills and competency (32,(34)(35)(36). Abel and colleagues (2020) sustain that a shift of focus from medical treatments to health and wellbeing would facilitate an early engagement and ease this di cult conversation across all care settings (37).…”

Section: Discussionmentioning

confidence: 99%

Before The 2020 Pandemic: An Observational Study Exploring Public Knowledge, Attitudes, Plans, and Preferences Towards Death and End of Life Care in Wales

Islam

Nelson

Longo

et al. 2021

Preprint

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Background: Understanding public attitudes towards death and dying is important to inform public policies around End of Life Care (EoLC). We studied the public attitudes towards death and dying in Wales.Methods: An online survey was conducted in 2018. Social media and the HealthWiseWales platform were used to recruit participants. Data were analysed using descriptive statistics and thematic analysis.Results: 2,210 people participated. Loss of independence (84%), manner of death, and leaving their beloved behind were the biggest fears around death and dying. In terms of EoLC, participants sought timely access to care (84%) and being surrounded by loved ones (62%). Being at home was less of a priority (24%). Only 50% were familiar with Advance Care Planning (ACP). A lack of standard procedures as well as of support for the execution of plans and the ability to revisit those plans hindered uptake. The taboo around death conversations, the lack of opportunities and skills to initiate discussion, and personal fear and discomfort inhibited talking bout death and dying. 72% felt that we do not talk enough about death and dying and advocated normalising talking by demystifying death with a positive approach. Health professionals can initiate and support this conversation, but this depended on communication skills and manageable workload pressure. Participants encouraged a public health approach and endorsed the use of: a) social media and other public platforms, b) formal education, c) formal and legal actions, and d) signposting and access to information. Conclusions: People are ready to talk about death and dying and COVID-19 has increased awareness. A combination of top-down and bottom-up initiatives across levels and settings can increase awareness, knowledge, and service-utilisation - drivers to support health professionals and people towards shared decisions which align with people’s end of life wishes and preferences.

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“…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.…”

Section: Discussionmentioning

confidence: 99%

“…(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.…”

Section: Discussionmentioning

confidence: 99%

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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

Dunleavy

Walshe

et al. 2020

Preprint

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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.

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Advance care planning re-imagined: a needed shift for COVID times and beyond

Cited by 35 publications

References 22 publications

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

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

Before The 2020 Pandemic: An Observational Study Exploring Public Knowledge, Attitudes, Plans, and Preferences Towards Death and End of Life Care in Wales

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

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