Electronic Palliative Care Coordination Systems Research Articles

Digital advance care planning with severe mental illness: a retrospective observational cohort analysis of the use of an electronic palliative care coordination system

BackgroundPeople living with severe mental illness (SMI) face significant health inequalities, including in palliative care. Advance Care Planning (ACP) is widely recommended by palliative care experts and could reduce inequalities. However, implementing ACP with this group is challenging. Electronic Palliative Care Coordination Systems such as Coordinate my Care (CMC) have been introduced to support documentation and sharing of ACP records with relevant healthcare providers. This study explores the use of CMC amongst those with SMI and aims to describe how those with a primary diagnosis of SMI who have used CMC for ACP, and makes recommendations for future research and policy.MethodA retrospective observational cohort analysis was completed of CMC records created 01/01/2010–31/09/2021 where the service user had a primary diagnosis of SMI, with no exclusions based on comorbidities. Descriptive statistics were used to report on characteristics including: age, diagnosis, individual prognosis and resuscitation status. Thematic analysis was used to report on the content of patients’ statements of preference.Results1826 records were identified. Of this sample most (60.1%) had capacity to make treatment decisions, 47.8% were aged under 70, 86.7% were given a prognosis of ‘years’ and most (63.1%) remained for full cardio-pulmonary resuscitation in the event of cardio-pulmonary arrest. Records with completed statements of preferences (20.3%) contained information about preferences for physical and mental health treatment care as well as information about patient presentation and capacity, although most were brief and lacked expression of patient voice.DiscussionCompared to usual CMC users, the cohort of interest are relatively able, younger people using CMC to make long-term plans for active physical and mental health treatment. ADM is a service user-driven process, and so it was expected that authentic patient voice would be expressed within statements of preference, however this was mostly not achieved.ConclusionsThis digital tool is being used by people with SMI but to plan for more than palliative care. This cohort and supporting professionals have used CMC to plan for longer term physical and mental healthcare. Future research and policy should focus on development of tailored digital tools for people with SMI to plan for palliative, physical and mental healthcare and support expression of patient voice.

1329 IMPROVING ADVANCED CARE PLANNING IN SEVERE FRAILTY

Abstract Introduction NICE guidance recommends that doctors need to identify patients who are approaching their final year of life, through the utilisation of tools such as the Clinical Frailty Score (CFS). The ‘Getting it right first time’ (GIRFT) document recommended that all local health systems identify older people in the last phase of life and offer them Advanced Care Planning (ACP). Wigan has a large population of frail patients who would benefit from ACP discussions. Aim Initiate a strategy for identifying patients with severe frailty and establish a process for implementing ACP. Method Retrospective discharge data was used to identify patients aged >65 years, with a CFS of >7, over an 8-week period. The cohort was examined to see if they had been recognised as a patient who would benefit from ACP, or if an aspect of ACP had been completed during their admission. In total, 19 patients were identified, of which 6 were included and 13 were excluded. Results Initial data showed that we were poor at identifying and completing ACPs for patients with severe frailty. No advanced care planning decisions (0%) were taken during this period. Education (PDSA cycle 1) on ACPs for the ward doctors led to an improvement regarding ACP discussions. However, we were still poor at identifying severe frailty. Education (PSDA cycle 2) for nursing staff was undertaken, which highlighted inaccuracies with calculating CFS. Further PDSA cycles are to follow, including a geriatric frailty score assessment, introduction of Electronic Palliative Care Coordination Systems (EPACCS) and frailty posters and cards. Conclusion Severe frailty is an end-of-life state and should trigger a healthcare professional to identify and sensitively discuss end of life needs and preferences. ACP should be disseminated to other healthcare professionals to allow them to act in accordance with the patient’s wishes or best interests.

Mapping and characterising electronic palliative care coordination systems and their intended impact: A national survey of end-of-life care commissioners.

In England, Electronic Palliative Care Coordination Systems (EPaCCS) were introduced in 2008 to support care coordination and delivery in accordance with patient preferences. Despite policy supporting their implementation, there has been a lack of rigorous evaluation of EPaCCS and it is not clear how they have been translated into practice. This study sought to examine the current national implementation of EPaCCS, including their intended impact on patient and service outcomes, and barriers and facilitators for implementation. We conducted a national cross-sectional online survey of end-of-life care commissioning leads for Clinical Commissioning Groups (CCGs) in England. We enquired about the current implementation status of EPaCCS, their role in information sharing and intended impact, and requested routine patient-level data relating to EPaCCS. Out of 135 CCGs, 85 (63.0%) responded, with 57 (67.1%) having operational EPaCCS. Use of EPaCCS were confined to healthcare providers with most systems (67%) not supporting information sharing with care homes and social care providers. Most systems (68%) sought to facilitate goal concordant care, although there was inconsonance between intended impacts and monitoring measures used. Common challenges to implementation included healthcare professionals' limited engagement. Only one-third of patients had an EPaCCS record at death with limited recording of patient preferences. Critical gaps exist in engagement with EPaCCS and their ability to facilitate information sharing across care providers. The limited alignment between stated goals of EPaCCS and their monitoring impedes efforts to understand which characteristics of systems can best support care delivery.

Impact of electronic palliative care coordination systems (EPaCCS) on care at the end of life across multiple care sectors, in one clinical commissioning group area, in England: a realist evaluation protocol

IntroductionElectronic palliative care coordination systems (EPaCCS) aim to support people approaching the end of life (EOL) to receive consistent care, according to their wishes, that is coordinated effectively across multiple...

Crash course in EPaCCS (Electronic Palliative Care Coordination Systems): 8 years of successes and failures in patient data sharing to learn from

BackgroundElectronic Palliative Care Coordination Systems (EPaCCS) are England's pre-eminent initiative in enabling advance care planning and improved communication and coordination at the end of life. EPaCCS have been under development...

Electronic palliative care coordination systems: Devising and testing a methodology for evaluating documentation

Background: The need to improve coordination of care at end of life has driven electronic palliative care coordination systems implementation across the United Kingdom and internationally. No approaches for evaluating electronic palliative care coordination systems use in practice have been developed. Aim: This study outlines and applies an evaluation framework for examining how and when electronic documentation of advance care planning is occurring in end of life care services. Design: A pragmatic, formative process evaluation approach was adopted. The evaluation drew on the Project Review and Objective Evaluation methodology to guide the evaluation framework design, focusing on clinical processes. Setting/participants: Data were extracted from electronic palliative care coordination systems for 82 of 108 general practices across a large UK city. All deaths (n = 1229) recorded on electronic palliative care coordination systems between April 2014 and March 2015 were included to determine the proportion of all deaths recorded, median number of days prior to death that key information was recorded and observations about routine data use. Results: The evaluation identified 26.8% of all deaths recorded on electronic palliative care coordination systems. The median number of days to death was calculated for initiation of an electronic palliative care coordination systems record (31 days), recording a patient’s preferred place of death (8 days) and entry of Do Not Attempt Cardiopulmonary Resuscitation decisions (34 days). Where preferred and actual place of death was documented, these were matching for 75% of patients. Anomalies were identified in coding used during data entry on electronic palliative care coordination systems. Conclusion: This study reports the first methodology for evaluating how and when electronic palliative care coordination systems documentation is occurring. It raises questions about what can be drawn from routine data collected through electronic palliative care coordination systems and outlines considerations for future evaluation. Future evaluations should consider work processes of health professionals using electronic palliative care coordination systems.

Electronic palliative care coordinating systems (EPaCCS) may not facilitate home deaths: A mixed methods evaluation of end of life care in two English counties

Electronic palliative care coordination systems (EPaCCS) detail preferred place of death across health and voluntary sector boundaries. Quantitative studies suggest that individuals recorded on EPaCCS are more likely to die at home. This study aimed to explore this relationship between EPaCCS and home deaths. Patient records from EPaCCS were collected from 1 September 2011 to 29 February 2012, linked to death data and analysed using descriptive statistics. We interviewed 101 professionals, including community nurses, and employed framework analysis. Few eligible patients were entered on EPaCCS (9% North Somerset, 13% Somerset). Of those, the majority died in community settings (87%, 81/93 North Somerset; 93% 307/331 Somerset). However, interviews and EPaCCS record analysis suggested that EPaCCS was almost exclusively used by community nurses and GPs, so, unsurprisingly, the relationship between EPaCCS and home deaths was strong. Difficulties included professional reluctance to discuss death, and the burden of data entry falling on daytime staff for out-of-hours colleagues. These results challenge assumptions that EPaCCS facilitates increased home deaths, as qualitative investigation identified selection bias. To avoid misinterpretations, future studies should employ mixed methods. The implementation of an electronic tool is not enough on its own to ensure that advanced care wishes are available, as long-standing organisational and cultural issues, such as professionals working in silos and professional reluctance to have ‘end of life’ discussions, also need to be addressed.

CHALLENGING CHANGE MANAGEMENT: LESSONS FROM THE CAMBRIDGESHIRE ELECTRONIC PALLIATIVE CARE COORDINATION SYSTEM

BackgroundLocality Registers, later EPaCCS (Electronic Palliative Care Coordination Systems), were advanced as key to improving care coordination by the 2008 End of Life Care Strategy. EPaCCS were strongly supported by...

Supporting care integration with Electronic Palliative Care Coordination Systems (EPaCCS)

Supporting care integration with Electronic Palliative Care Coordination Systems (EPaCCS)

New Arrangements for The National End of Life Care Programme and Recent Publications

On 1 April 2013, a new improvement body, NHS Improving Quality, was established. It is hosted by the NHS Commissioning Board and brings together the combined knowledge and experience of a number of NHS improvement organisations: As a consequence, the National End of Life Care Programme (NEoLCP) ceased to exist in its current form from 31 March 2013. Some elements of NEoLCP work were due to finish by that time, while others have been transferred to the new organisation. Key end-of-life care (EoLC) priorities will continue to be supported and implemented within the NHS. Both Electronic Palliative Care Co-ordination Systems (EPaCCS) (NEoLCP, 2013a) and Transforming End of Life Care in Acute Hospitals (NEoLCP, 2012) will continue as work programmes, while the National End of Life Care Intelligence Network will continue to operate as part of Public Health England, from April 2013. For enquiries relating to the transition, please visit the ‘about us’ section of the NEoLCP website: http://www.endoflifecare.nhs.uk/about-us.aspx NHS Improving Quality aims to reshape the means by which improvement occurs in health care and support the NHS Outcomes Framework and the NHS Commissioning Board’s five domains (Department of Health, 2012) ( Table 1 ). (The NHS Outcomes Framework sets out the outcomes and corresponding indicators that will be used to monitor improvements in health outcomes.)The NEoLCP team has always been committed to ensuring dissemination of information to clinicians and all its partners and stakeholders. In recent weeks it has launched a number of key reports and publications (discussed below) in order to share data, research findings and …

Electronic palliative care co-ordination systems improve information provided to out of hours teams

The UK Department of Health (DOH) End-of-life care strategy advocates Electronic Palliative Care Coordination Systems (EPCCS) to improve communication across providers in acute and community sectors 24 h a day....