Use of telehealth in the provision of after-hours palliative care services in rural and remote Australia: A scoping review protocol

Introduction After-hours services are essential in ensuring patients with life limiting illness and their caregivers are supported to enable continuity of care. Telehealth is a valuable approach to meeting after-hours support needs of people living with life-limiting illness, their families, and caregivers in rural and remote communities. It is important to explore the provision of after-hours palliative care services using telehealth to understand the reach of these services in rural and remote Australia. A preliminary search of databases failed to reveal any scoping or systematic reviews of telehealth in after-hours palliative care services in rural or remote Australia. Aim To review and map the available evidence about the use of telehealth in providing after-hours palliative care services in Australian rural and remote communities. Methods The proposed scoping review will be conducted using the Arksey and O’Malley methodological framework and in accordance with the Joanna Briggs Institute methodology for scoping reviews. The reporting of the scoping review will be guided by the Preferred Reporting Items for Systematic reviews and Meta-Analyses extension for Scoping Reviews (PRISMA-ScR). This review will consider research and evaluation of after-hours services using telehealth for palliative care stakeholders in rural and remote Australia. Peer reviewed studies and grey literature published in English from 2000 to May 2021 will be included. Scopus, Web of Science, CINAHL Complete, Embase via Ovid, PsycINFO via Ovid, Emcare via Ovid, Medline via Ovid, and grey literature will be searched for relevant articles. Titles and abstracts will be screened by two independent reviewers for assessment against the inclusion criteria. Data will be extracted and analysed by two reviewers using an adapted data extraction tool and thematic analysis techniques. Diagrams, tables, and summary narratives will be used to map, summarise and thematically group the characteristics of palliative care telehealth services in rural and remote Australia, including stakeholders’ perceptions and benefits and challenges of the services.

Levels and Determinants of Place-Of-Death Congruence in Palliative Patients: A Systematic Review

Introduction: Congruence, understood as the agreement between the patient's preferred place of death and their actual place of death, is emerging as one of the main variables indicating the quality of end-of-life care. The aim of this research was to conduct a systematic literature review on levels and determinants of congruence in palliative patients over the period 2010–2021.Method: A systematic review of the literature in the databases of PubMed, Scopus, Web of Science, PsycINFO, CINAHL, Cuiden, the Cochrane Library, CSIC Indexes, and IBECS. Information was extracted on research characteristics, congruence, and associated factors.Results: A total of 30 studies were identified, mainly of retrospective observational design. The congruence values varied substantially between the various studies, ranging from 21 to 100%. The main predictors of congruence include illness-related factors (functional status, treatments and diagnosis), individual factors (age, gender, marital status, and end of life preferences), and environmental factors (place of residence, availability of health, and palliative care services).Conclusion: This review, in comparison with previous studies, shows that treatment-related factors such as physical pain control, marital status, having a non-working relative, age, discussing preferred place of death with a healthcare professional, and caregiver's preference have been associated with higher levels of congruence. Depending on the study, other factors have been associated with either higher or lower congruence, such as the patient's diagnosis, gender, or place of residence. This information is useful for designing interventions aimed towards greater congruence at the end of life.

The First Step to Initiate Pediatric Palliative Care: Identify Patient Needs and Cooperation of Medical Staff

Few Korean hospitals had experience in pediatric palliative care. Since the beginning of the national palliative care project, interest in pediatric palliative care has gradually increased, but the establishment of professional palliative care is still inadequate due to a lack of indicators. This study aimed to find considerations in the process of initiating palliative care services. The general and clinical characteristics of 181 patients aged less than 24 years who were registered at the pediatric palliative care center from January 2019 to August 2021 were evaluated. Life-limiting condition group 1 had the largest number of patients. The primary need for palliative care was psychological and emotional support, followed by information sharing and help in communication with the medical staff in decision-making processes. Seventy-two patients were technologically dependent, with one to four technical supports for each patient. The registration of patients with cancer increased with time, and the time from disease diagnosis to consultation for pediatric palliative care service was significantly reduced. In conclusion, before starting pediatric palliative care, it is necessary to understand the needs of patients and their families and to cooperate with medical staff.

Understanding Long-Term Outcomes of Public Health Strategy in Palliative Care at Micro Level: Impact of Home-Based Palliative Care Services under Local Self-Government Institutions in Kerala, India

Objectives: Palliative care units under Local Self-Government Institutions (LSGIs) are increasing in number in the state of Kerala, India, since the announcement of the Pain and Palliative Care Policy, 2008. Whether these units are functioning with a view to materialise the long-term objectives, following the guidelines stipulated by the Government of Kerala and serve the neediest patients with quality care are a matter of debate. Hence, a microlevel study of the palliative care unit is attempted. The aims of the study were to understand the extent to which the structure and nature of functioning of the Pain and Palliative Care Unit under LSGI comply with guidelines set by the Pain and Palliative Care Policy of the Government of Kerala and to check whether the palliative care services are reaching the needy and, if so, are they provided to patients in good quality. Materials and Methods: The award winning Pain and Palliative Care Unit attached to LSGI is selected for analysis and a hybrid research design is followed. Data are collected from 25 patients and their caregivers selected randomly. Mean score of satisfaction level on the basis of Quality care questionnaire -Palliative care is used. Results: Sample unit complies with the revised guidelines of 2015, Pain and Palliative Care Policy. It serves the neediest patients and the quality of care is satisfactory. Conclusion: The study reaffirms the strength of the public health model in palliative care which can provide quality care to the neediest patients.

Understanding the impact of the Covid-19 pandemic on delivery of rehabilitation in specialist palliative care services: An analysis of the CovPall-Rehab survey data

Background: Palliative rehabilitation involves multi-professional processes and interventions aimed at optimising patients’ symptom self-management, independence and social participation throughout advanced illness. Rehabilitation services were highly disrupted during the Covid-19 pandemic. Aim: To understand rehabilitation provision in palliative care services during the Covid-19 pandemic, identifying and reflecting on adaptative and innovative practice to inform ongoing provision. Design: Cross-sectional national online survey. Setting/participants: Rehabilitation leads for specialist palliative care services across hospice, hospital, or community settings, conducted from 30/07/20 to 21/09/2020. Findings: 61 completed responses (England, n = 55; Scotland, n = 4; Wales, n = 1; and Northern Ireland, n = 1) most frequently from services based in hospices (56/61, 92%) providing adult rehabilitation. Most services (55/61, 90%) reported rehabilitation provision becoming remote during Covid-19 and half reported reduced caseloads. Rehabilitation teams frequently had staff members on sick-leave with suspected/confirmed Covid-19 (27/61, 44%), redeployed to other services/organisations (25/61, 41%) or furloughed (15/61, 26%). Free text responses were constructed into four themes: (i) fluctuating shared spaces; (ii) remote and digitised rehabilitation offer; (iii) capacity to provide and participate in rehabilitation; (iv) Covid-19 as a springboard for positive change. These represent how rehabilitation services contracted, reconfigured, and were redirected to more remote modes of delivery, and how this affected the capacity of clinicians and patients to participate in rehabilitation. Conclusion: This study demonstrates how changes in provision of rehabilitation during the pandemic could act as a springboard for positive changes. Hybrid models of rehabilitation have the potential to expand the equity of access and reach of rehabilitation within specialist palliative care.

A Systematized Approach to Advancing the Quality of Community-Based Palliative Care

Despite growing recognition of the importance of community-based palliative care, optimizing the use of services continues to be a challenge. Until recently, key barriers were reimbursement and limited access. As services have become increasingly available, engagement of patients and their caregivers has emerged as a major obstacle. The Palliative Activation SystemTM (PAS) is a comprehensive, quality improvement methodology designed to promote enhanced engagement of seriously ill adults and their caregivers in optimizing the use of community-based palliative care services and accelerate clinicians’ progress in meeting patients’ and caregivers’ care goals. This paper describes the design of the PAS. Experts in patient engagement and the development and evaluation of palliative care programs advised organizational leaders in the development of this methodology. The “Patient and Family Engagement” framework proposed by Carman and colleagues (2013) guided this work. The framework informed the selection of three core concepts—care alignment, illness trajectory, and social determinants of health—as foundational to the goals of the PAS. Additionally, this framework guided the selection of measures that will be used to assess progress in achieving enhanced engagement. This background work, coupled with findings from interviews with patients and caregivers who are current recipients of palliative care services, resulted in the implementation and ongoing testing of strategies targeting clinicians and organizational leaders and designed to enhance engagement. Lessons learned from the design phase of the PAS will advance the efforts of other organizations committed to increasing patient and caregiver engagement and enhancing attainment of their goals.

The frequency and time point of outpatient palliative care integration for people before death: an analysis of health insurance data in Lower Saxony, Germany

Aim This study aimed to analyse the number of deceased people who received different types of outpatient palliative care, the length of time prior to death that care was initiated, and their palliative care trajectory including the rate of hospital death. Subject and methods Data on 35,514 adults insured by the statutory health insurance who died in 2017 in Lower Saxony, Germany, were analysed. The study examined the provision of three different types of outpatient palliative care: general (GPC), intermediate (IPC) and specialised palliative care (SPC). In addition, oncological palliative care services (OS) were considered. Descriptive analyses include frequencies, timing and duration of these services, the number of inpatient hospital stays and hospital deaths. Results Prior to death, 31.4% of the deceased received outpatient palliative care: 21.3% GPC, 6.4% GPC with IPC and/or SPC and/or OS; and 3.7% IPC and/or SPC and/or OS, but no GPC. On average, GPC and OS were initiated 9 months and SPC 3 months prior to death. Six percent of the analytic sample received outpatient palliative care more than 2 years before death. Compared to those without outpatient palliative care, patients who received outpatient palliative care had more and longer inpatient hospital stays, but less frequently died in hospital. Conclusion Early outpatient palliative care took place in a minor percentage of deceased. Outpatient palliative care starts late before death for most patients, but enables more people not to die in hospital. However, significantly fewer people receive outpatient palliative care relative to current demand estimates. This is particularly true of general outpatient palliative care.