Advance care planning before and during COVID-19: evaluation of 73,675 patients' records.

BACKGROUND: Advance care planning (ACP) was encouraged by policymakers throughout the COVID-19 pandemic. Little is known about use of ACP during this time. AIM: To compare use of ACP before and during the COVID-19 pandemic. DESIGN & SETTING: Retrospective, observational cohort study, comparing the creation, use and content of Electronic Palliative Care Co-ordination System records in London. Individuals aged 18+ with a Coordinate My Care Record, created and published in the pre-pandemic period (01/01/2018-31/12/2019), Wave1 (W1) (20/03/2020-04/07/2020), and Wave2 (W2) (01/10/2020-05/03/2021). METHOD: Patient demographics and components of ACP were compared using descriptive and comparative statistics. RESULTS: 73,675 records were included; 35,108 pre-pandemic, 21,235 W1, 9,925 W2. Most records were created in primary care (56% pre-COVID, 76% in W1 and 48% in W2).Compared to the pre-pandemic period, the average weekly number of records created increased by 297% W1 (P<0.005) and 29.1% W2 (P<0.005). Patients with records created during the pandemic were younger (61% aged 80+ W1, 59% W2, 65% pre-pandemic (P<0.005)). Patients with records created in W1 had longer estimated prognoses at record creation (73% had an estimated prognosis of 1 year+ W1 vs 53% pre-pandemic (P<0.005)) and were more likely to be "For Resuscitation" (38% W1 vs 30% pre-pandemic (P<0.005)). CONCLUSION: During the COVID-19 pandemic, increased ACP activity was observed, especially in primary care, and for younger people and those not imminently dying. Further research is needed to identify training and planning requirements as well as organisational and system changes to support sustained high-quality ACP within primary care.

Social media for palliative and end-of-life care research: a systematic review.

BACKGROUND: Social media with real-time content and a wide-reaching user network opens up more possibilities for palliative and end-of-life care (PEoLC) researchers who have begun to embrace it as a complementary research tool. This review aims to identify the uses of social media in PEoLC studies and to examine the ethical considerations and data collection approaches raised by this research approach. METHODS: Nine online databases were searched for PEoLC research using social media published before December 2022. Thematic analysis and narrative synthesis approach were used to categorise social media applications. RESULTS: 21 studies were included. 16 studies used social media to conduct secondary analysis and five studies used social media as a platform for information sharing. Ethical considerations relevant to social media studies varied while 15 studies discussed ethical considerations, only 6 studies obtained ethical approval and 5 studies confirmed participant consent. Among studies that used social media data, most of them manually collected social media data, and other studies relied on Twitter application programming interface or third-party analytical tools. A total of 1 520 329 posts, 325 videos and 33 articles related to PEoLC from 2008 to 2022 were collected and analysed. CONCLUSIONS: Social media has emerged as a promising complementary research tool with demonstrated feasibility in various applications. However, we identified the absence of standardised ethical handling and data collection approaches which pose an ongoing challenge. We provided practical recommendations to bridge these pressing gaps for researchers wishing to use social media in future PEoLC-related studies.

Examining how goals of care communication are conducted between doctors and patients with severe acute illness in hospital settings: A realist systematic review.

BACKGROUND: Patient involvement in goals of care decision-making has shown to enhance satisfaction, affective-cognitive outcomes, allocative efficiency, and reduce unwarranted clinical variation. However, the involvement of patients in goals of care planning within hospitals remains limited, particularly where mismatches in shared understanding between doctors and patients are present. AIM: To identify and critically examine factors influencing goals of care conversations between doctors and patients during acute hospital illness. DESIGN: Realist systematic review following the RAMESES standards. A protocol has been published in PROSPERO (CRD42021297410). The review utilised realist synthesis methodology, including a scoping literature search to generate initial theories, theory refinement through stakeholder consultation, and a systematic literature search to support program theory. DATA SOURCES: Data were collected from Medline, PubMed, Embase, CINAHL, PsychINFO, Scopus databases (1946 to 14 July 2023), citation tracking, and Google Scholar. Open-Grey was utilized to identify relevant grey literature. Studies were selected based on relevance and rigor to support theory development. RESULTS: Our analysis included 52 papers, supporting seven context-mechanism-output (CMO) hypotheses. Findings suggest that shared doctor-patient understanding relies on doctors being confident, competent, and personable to foster trusting relationships with patients. Low doctor confidence often leads to avoidance of discussions. Moreover, information provided to patients is often inconsistent, biased, procedure-focused, and lacks personalisation. Acute illness, medical jargon, poor health literacy, and high emotional states further hinder patient understanding. CONCLUSIONS: Goals of care conversations in hospitals are nuanced and often suboptimal. To improve patient experiences and outcome of care interventions should be personalised and tailored to individual needs, emphasizing effective communication and trusting relationships among patients, families, doctors, and healthcare teams. Inclusion of caregivers and acknowledgment at the service level are crucial for achieving desired outcomes. Implications for policy, research, and clinical practice, including further training and skills development for doctors, are discussed.

Uncertainty in serious illness: A national interdisciplinary consensus exercise to identify clinical research priorities.

BACKGROUND: Serious illness is characterised by uncertainty, particularly in older age groups. Uncertainty may be experienced by patients, family carers, and health professionals about a broad variety of issues. There are many evidence gaps regarding the experience and management of uncertainty. AIM: We aimed to identify priority research areas concerning uncertainty in serious illness, to ensure that future research better meets the needs of those affected by uncertainty and reduce research inefficiencies. METHODS: Rapid prioritisation workshop comprising five focus groups to identify research areas, followed by a ranking exercise to prioritise them. Participants were healthcare professionals caring for those with serious illnesses including geriatrics, palliative care, intensive care; researchers; patient/carer representatives, and policymakers. Descriptive analysis of ranking data and qualitative framework analysis of focus group transcripts was undertaken. RESULTS: Thirty-four participants took part; 67% female, mean age 47 (range 33-67). The highest priority was communication of uncertainty, ranked first by 15 participants (overall ranking score 1.59/3). Subsequent priorities were: 2) How to cope with uncertainty; 3) healthcare professional education/training; 4) Optimising clinical approaches to uncertainty; and 5) exploring in-depth experiences of uncertainty. Research questions regarding optimal management of uncertainty were given higher priority than questions about experiences of uncertainty and its impact. CONCLUSIONS: These co-produced, clinically-focused research priorities map out key evidence gaps concerning uncertainty in serious illness. Managing uncertainty is the most pressing issue, and researchers should prioritise how to optimally manage uncertainty in order to reduce distress, unlock decision paralysis and improve illness and care experience.