Researchers in the UK have warned that healthcare professionals and providers need to consider how Advance Care Planning (ACP) can be resourced and normalized as part of standard care during the current coronavirus disease 2019 (COVID-19) pandemic caused by severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2), ahead of recurrent or future waves.
The researchers conducted a cross-sectional online survey of UK specialist palliative and hospice care services as part of “The CovPall study” – a multinational observational study of palliative care during the COVID-19 pandemic.
Andy Bradshaw from the University of Hull and colleagues from Lancaster University, King’s College London, and the University of York say COVID-19 has provided an opportunity to re-think how ACP is delivered, with the starting point of discussions tailored to the values, priorities and ethnic, cultural and religious context of each individual.
The multiple components of APC need to be well delivered to ensure that the care patients receive is inclusive, holistic, and personalized to incorporate what matters most to each individual, says the team.
A pre-print version of the paper is available in the server medRxiv* while the article undergoes peer review.
Palliative care services play an important role during the pandemic
The proportion of people suffering with or dying from COVID-19 is placing unprecedented pressure on health services across the globe.
Worldwide, specialist palliative care services play an important part in the response to COVID-19 by conducting personalized ACP discussions with patients and care networks.
However, little is known about the challenges faced in the delivery of ACP in this context or the changes that palliative care services have made while adapting to them.
“In the COVID-19 pandemic, it is crucial that healthcare professionals have high quality and timely ACP discussions with patients and their families, to enhance the likelihood of improved outcomes and satisfaction,” said the researchers.
However, patient factors such as unpredictable disease, anxiety and denial; professional factors such as lack of communications training or time constraints and system-wide factors such as limited resources all present challenges in both initiating and following up on ACP discussions.
“Addressing these issues is crucial in optimizing the specialist palliative care response to the COVID-19 pandemic and for adapting to future increases in the need for palliative care,” writes Bradshaw and colleagues.
What did the researchers do?
The team conducted a cross-sectional online survey of services providing hospice and specialist palliative care in response to COVID-19 across the UK.
Services that had been providing inpatient palliative care, hospital palliative care, home palliative care and home nursing settings were recruited between April and July 2020.
The aim was to identify the challenges faced by UK palliative care services regarding ACP during the height of the COVID-19 pandemic and any changes that were made to support ACP.
What were the main challenges?
The team identified many challenges that already existed before the COVID-19 pandemic, as well as ones that were COVID-19 specific or exacerbated the challenges that already existed.
At the individual level, the main challenges exacerbated by COVID-19 were maintaining a personalized approach and making difficult clinical decisions about a novel disease.
At the interpersonal level, COVID-specific communication difficulties were reported as challenging at and within team levels. Challenges included increased workload and pressure as staff and services decreased.
At the national level, the sharing of ACP-related information in the context of fear and uncertainty was reported as challenging.
“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,” said Bradshaw and colleagues.
What changes were made to support APC in the face of these challenges?
Responding to these challenges, services adapted by making changes to local care processes such as prioritizing specific ACP components and adapting local structures by using technology or shifting resources, for example.
The researchers say evidence has already emerged demonstrating the benefits of some of these changes, such as having ACP discussions at an earlier stage and training to enhance healthcare staffs’ skills and confidence in discussing APCs.
However, some of the changes, such as prioritizing specific ACP components, were less helpful, say the researchers.
This is because ACP is a multi-component process, rather than “a one-time event/document,” especially since an individual’s preferences and priorities are complex and can change over time, say Bradshaw and team.
Implications for healthcare services and policymakers
The researchers say it is important to deliver all of the multiple components of ACP and to deliver them well, to ensure inclusive, holistic, and individualized care that focuses on what matters most to patients.
“Professionals and healthcare providers need to ensure ACP is well-founded for individuals, and genuinely tailored to their values and priorities, and attuned to their ethnic, cultural and religious context,” they write.
“Policymakers for health and social care need to consider carefully how high-quality ACP can be resourced and normalized as a part of standard healthcare ahead of future pandemic waves,” concludes the team.
medRxiv publishes preliminary scientific reports that are not peer-reviewed and, therefore, should not be regarded as conclusive, guide clinical practice/health-related behavior, or treated as established information.