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

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.

Palliative care in COVID-19

“…Third, advance care planning and decision-making were further challenged by both the lack of knowledge, and the huge amount of uncertainty, regarding the clinical course and prognosis of COVID-19 as well as time constraints. Because of these time constraints, clinicians found they had to rush their advance care planning conversations [ 20 ]. Healthcare providers observed that media coverage increased fear among patients and families that clinical decisions were made in the context of limited resources [ 20 ].…”

“…Because of these time constraints, clinicians found they had to rush their advance care planning conversations [ 20 ]. Healthcare providers observed that media coverage increased fear among patients and families that clinical decisions were made in the context of limited resources [ 20 ].…”

Experiences of staff providing specialist palliative care during COVID-19A multiple qualitative case study

“…A combination of dealing with death and dying, risks of infection, personal loss/grief, and operating in insufficiently resourced services has resulted in many experiencing anxiety, depression, insomnia, burnout, and post-traumatic stress disorder. [4][5][6][7][8] Palliative care is a unique speciality in that staff are used to dealing with dying and may have been less affected by this aspect of the COVID-19 pandemic. Nevertheless, in responding to COVID-19, palliative care professionals have been confronted with constraints and obstacles (e.g., making complex and difficult decisions, infection control, dealing with uncertainty, and recognising deep inequities 6,9,10 ) that have severely challenged their ability to provide care in accordance with their professional values.…”

“…[4][5][6][7][8] Palliative care is a unique speciality in that staff are used to dealing with dying and may have been less affected by this aspect of the COVID-19 pandemic. Nevertheless, in responding to COVID-19, palliative care professionals have been confronted with constraints and obstacles (e.g., making complex and difficult decisions, infection control, dealing with uncertainty, and recognising deep inequities 6,9,10 ) that have severely challenged their ability to provide care in accordance with their professional values. These values include alleviating suffering and enhancing the quality of life of dying patients and their families through the adoption of a holistic, compassionate, person-centred, dignified, safe, and multidisciplinary approach.…”

Communication in palliative care during the COVID-19 pandemic: Lessons from rapidly changing, uncertain, complex, and high-stake interventions

“…In this issue, two papers help address the timing and urgency questions which arose during the COVID-19 pandemic. Bradshaw et al 8 from the CovPall study 9,10 report on changes that UK specialist palliative care services made to support timely conversations, and the challenges they experienced in advance care planning. Lack of face-toface contact resulted in loss of key communication strategies, impacting on the ability to develop rapport with individuals, through identifying and responding to nonverbal cues, particularly where capacity, cultural or language issues were also present.…”