Electronic Palliative Care Coordination System Research Articles

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

Advance care planning (ACP) was encouraged by policymakers throughout the COVID-19 pandemic. Little is known about use of ACP during this time. To compare use of ACP before and during the COVID-19 pandemic. 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). Patient demographics and components of ACP were compared using descriptive and comparative statistics. 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)). 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.

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.

END OF LIFE CARE IN BRAIN TUMOUR PATIENTS: DEMOGRAPHICS AND PREFERENCES

Abstract AIMS We used a regional NHS Electronic Palliative Care Coordination System (Coordinate My Care) to understand patient preferences and priorities for care at end-of-life. We present data on patient demographics and preferences and factors influencing the location of death in a primary brain tumour patient cohort. METHOD We identified all primary brain tumour patients from NW and SW London on the system. We examined patient demographics and compared the recorded preferred place of death (PPD) with the actual place and explored how patient demographics differ according to this. RESULTS Our dataset contains 1437 patients. 55% were male and 53% were 65 or older. 1222 (85%) were deceased. Of patients that had a recorded preference (N=987), 30 (3.0%) had hospital recorded as one of their two PPDs. Of those with a recorded place of death (N=864), 10.5% died in hospital. 24.8% had an unknown actual or PPD. Of those with a recorded preferred and actual place of death , 83.6% died in PPD. Patients who died at their preferred location had lower overall survival and were more likely to have stayed in a care home. A higher percentage of men compared to females died in a location other than their PPD. CONCLUSIONS Here we present preliminary analysis of patient provided data and their preferences for end-of-life care. We will triangulate these data end-of-life care data from Gliocova project, where we have data on over 50,000 brain tumour patients, to get a more in depth understanding of the patient care in the last months of life.

Accuracy of clinical predictions of prognosis at the end-of-life: evidence from routinely collected data in urgent care records

BackgroundThe accuracy of prognostication has important implications for patients, families, and health services since it may be linked to clinical decision-making, patient experience and outcomes and resource allocation. Study aim is to evaluate the accuracy of temporal predictions of survival in patients with cancer, dementia, heart, or respiratory disease.MethodsAccuracy of clinical prediction was evaluated using retrospective, observational cohort study of 98,187 individuals with a Coordinate My Care record, the Electronic Palliative Care Coordination System serving London, 2010–2020. The survival times of patients were summarised using median and interquartile ranges. Kaplan Meier survival curves were created to describe and compare survival across prognostic categories and disease trajectories. The extent of agreement between estimated and actual prognosis was quantified using linear weighted Kappa statistic.ResultsOverall, 3% were predicted to live “days”; 13% “weeks”; 28% “months”; and 56% “year/years”. The agreement between estimated and actual prognosis using linear weighted Kappa statistic was highest for patients with dementia/frailty (0.75) and cancer (0.73). Clinicians’ estimates were able to discriminate (log-rank p < 0.001) between groups of patients with differing survival prospects. Across all disease groups, the accuracy of survival estimates was high for patients who were likely to live for fewer than 14 days (74% accuracy) or for more than one year (83% accuracy), but less accurate at predicting survival of “weeks” or “months” (32% accuracy).ConclusionClinicians are good at identifying individuals who will die imminently and those who will live for much longer. The accuracy of prognostication for these time frames differs across major disease categories, but remains acceptable even in non-cancer patients, including patients with dementia. Advance Care Planning and timely access to palliative care based on individual patient needs may be beneficial for those where there is significant prognostic uncertainty; those who are neither imminently dying nor expected to live for “years”.

Advance Care Planning and Place of Death During the COVID-19 Pandemic: A Retrospective Analysis of Routinely Collected Data.

Increased advance care planning was endorsed at the start of the Coronavirus disease 2019 (COVID-19) pandemic with the aim of optimizing end-of-life care. This retrospective observational cohort study explores the impact of advanced care planning on place of death. 21,962 records from patients who died during the first year of the pandemic and who had an Electronic Palliative Care Coordination System record were included. 11,913 (54%) had a documented place of death. Of these 5,339 died at home and 2,378 died in hospital. 9,971 (45%) had both a documented place of death and a preferred place of death. Of these, 7,668 (77%) died in their preferred location. Documented elements of advance care planning, such as resuscitation status and ceiling of treatment decisions, were associated with an increased likelihood of dying in the preferred location, as were the number of times the record was viewed. During the COVID-19 pandemic, advanced care planning and the use of digital care coordination systems presented an opportunity for patients and healthcare staff to personalize care and influence end-of-life experiences.

139 What are the Barriers and Facilitators to Effective Advance Care Planning (ACP) in Residential Care Settings for Older People?

Abstract Introduction ACP is recommended for all people approaching the end of life but there is an inequality in access to ACP for care home residents. In North East Essex there has been an Electronic Palliative Care Coordination system (EPaCCS) in place for 6 years, currently without care home staff access capability. The aim of this study was to investigate ACP within care homes within this context. Method A qualitative study, with semi-structured interviews with fourteen senior care home staff from ten care homes across North East Essex. The interview transcripts underwent thematic analysis regarding facilitators and inhibitors to effective ACP. Results Four overarching themes were identified. These were relationships, communication, healthcare systems and attitudes. Care home staff considered ACP to be part of their role but perceived their work in this area to be separate from that performed by other health care professionals. The care home staff awareness of ACP done by other health care professionals was limited. Care home staff were aware of the EPaCCS, but only a minority perceived it to impact on residents care. All interviewees were keen to have access to the EPaCCS. Many of the facilitators and barriers to effective ACP in this locality are consistent with those found in prior literature. Having an EPaCCS within the area did not alleviate a perceived barrier of poor communication. Relationships between staff, residents, families and health care professionals remain the most common facilitators to ACP, with continuity of care from primary care, specialist palliative care and paperwork tools remaining important. Conclusion To overcome the inequity of access to ACP for residents in care homes interventions could be commissioned to address current barriers. These could include communication skills training, aligned primary care and community services as well as technological support for communication with family and access to EPaCCS.

Information sharing challenges in end-of-life care: a qualitative study of patient, family and professional perspectives on the potential of an Electronic Palliative Care Co-ordination System

ObjectivesTo explore current challenges in interdisciplinary management of end-of-life care in the community and the potential of an Electronic Palliative Care Co-ordination System (EPaCCS) to facilitate the delivery of care...

My life, my way, with your support: George's story.

The importance of early discussion and planning for end of life.The need to take risks that are considered and thought through, but nevertheless risks that will enhance end of life experience. Millington-Sanders C, Nadicksbernd JJ, O'Sullivan C, Morgan T, Raleigh A, Yeun P and Ormerod G (2013) Electronic palliative care co-ordination system: an electronic record that supports communication for end-of-life care - a pilot in Richmond, UK. London Journal of Primary Care 5: 106-110. http://www.radcliffehealth.com/ljpc/article/electronic-palliative-care-co-ordination-system-electronic-record-supports Thomas K (2009) Improving end of life care: a matter of life and death. London Journal of Primary Care 2: 89-92. http://www.radcliffehealth.com/sites/radcliffehealth.com/files/ljpc_articles/2_2_1.pdf. I am passionate about empowering people to have a choice and exert control over their lives, especially about how they spend their last weeks, days and hours of life. I want to ask the difficult questions of professionals and challenge what is perceived as the norm in practice, doing so by making sure that they listen to the voice of the person that they serve, hear it and act upon it.

ELECTRONIC PATIENT RECORDS MUST TALK TO AN ELECTRONIC PALLIATIVE CARE COORDINATION SYSTEM (EPACCS) FOR EFFECTIVE ADVANCE CARE PLANNING (ACP)

BackgroundAdvance Care Planning (ACP) is integral in facilitating end of life care (EOLC) preferences for patients. Evidence suggests that patients would prefer to die at home but recognise “the practical...

Electronic palliative care co-ordination system: an electronic record that supports communication for end-of-life care - a pilot in Richmond, UK.

Most people prefer to die at home, however, the majority die in an acute hospital. Supporting a patient in their preferred place of care may be aided by exchange of information across sectors. Richmond piloted an electronic palliative care coordination system (EPaCCS) to enhance interprofessional communication for end-of-life care. One such EPaCCS is the Coordinate My Care (CMC) hosted by the Royal Marsden NHS Foundation Trust, now supported across London. It focused clinicians on having advance care planning conversations with patients and their carers and then documenting the outcome onto an electronic web-based record that can be shared with key healthcare professionals.

The Development of An Electronic, Palliative Care, Coordination System

Effective coordination of care, sharing of information and partnership working are principles that define high-quality, end-of-life care. Technology is now being adapted to support these principles in order to improve, and put individual patients at the centre of, care at the end of life. The concept of an electronic, palliative care, coordination system (EPCCS), also known as a ‘locality register’, has been considered a potentially useful tool for improving end-of-life care in England for several years. The system is effectively a register, that holds key information about individuals nearing the end of life, thus helping the multidisciplinary team to coordinate care effectively. Information includes details of diagnosis and people’s preferences for end-of-life care ( Table 1 ). Individual records are accessible by a wide range of professionals and agencies involved in the patient’s care throughout the 24-hour period. View this table: Table 1 End-of-life care locality register core data set Those able to access information, when necessary, could ultimately include secondary care-based specialist consultants and colleagues, specialist palliative care teams, GPs, out-of-hours’ GP services, district nurses, Macmillan nurses, ambulance service paramedics and the local hospice. Such broad access, with the consent of individuals and appropriate safeguards, could provide the improved, safe, reliable coordination of care that is needed if individual preferences and wishes are to be met. It could also allow more people to die in the place of their choosing, with care and treatments shaped around their choices. EPCCSs will reduce the duplication of information-gathering, which is an inefficient use of clinicians’ time and can be stressful for patients. The systems developed so far have been centred on GP practices, often …