Palliative And End-of-life Care Research Articles

Quality of palliative and end-of-life care: a quantitative study of temporal trends and differences according to illness trajectories in Quebec (Canada)

BackgroundOur aim was to assess temporal trends and compare quality indicators related to Palliative and End-of-Life Care (PEoLC) experienced by people dying of cancer (trajectory I), organ-failure (Trajectory II), and frailty/dementia (trajectory III) in Quebec (Canada) between 2002 and 2016.MethodsThis descriptive population-based study focused on the last month of life of decedents who, based on the principal cause of death, would have been likely to benefit from palliative care. Five PEoLC indicators were assessed: home deaths (1), deaths in acute care beds with no PEoLC services (2), at least one Emergency Room (ER) visit in the last 14 days of life (3), ER visits on the day of death (4) and at least one Intensive Care Unit (ICU) admission in the last month of life (5). Data were obtained from Quebec’s Integrated Chronic Disease Surveillance System (QICDSS).ResultsThe annual percentage of home deaths increased slightly between 2002 and 2016 in Quebec, rising from 7.7 to 9.1%, while the percentage of death during a hospitalization in acute care without palliative care decreased from 39.6% in 2002 to 21.4% in 2016. Patients with organ failure were more likely to visit the ER on the day of death (20.9%) than patients dying of cancer and dementia/frailty with percentages of 12.0% and 6.4% respectively. Similar discrepancies were observed for ICU visits in the last month and ER visits in the last 14 days.ConclusionPEoLC indicators showed more aggressiveness of care for patients with organ failure and highlight the need for more equitable access to quality PEoLC between malignant and non-malignant illness trajectories. These results underline the challenges of providing timely and optimal PEoLC.

Palliative and End-of-Life Family Caregiving in Rural Areas: A Scoping Review of Social Determinants of Health and Emotional Well-Being.

Introduction: Due to their remote location, rural-dwelling family caregivers (FCGs) experience geographic and psychosocial challenges when providing home-based palliative and end-of-life (PEOL) care for their care recipient. Limited research has evaluated the social and environmental factors that may compound FCG burden and contribute to adverse emotional health outcomes among rural-dwelling PEOL FCGs. Objective: To characterize the social determinants of health (SDOH) that affect the provision of PEOL care among rural-dwelling FCGs, along with symptoms of anxiety and depression. Methods: A scoping review was conducted using Arksey and O'Malley's Framework. Searches were conducted in PubMed, CINAHL, PsycINFO, and Cochrane, and 511 articles published between 2010 and 2023 were screened. Keywords included "rural," "PEOL care," and "FCG." Inclusion criteria included FCGs, ages ≥18 years; findings reported on SDOH, anxiety, and/or depressive symptoms; within a rural context; and U.S. based. Findings: In this review, 18 studies met eligibility and were included. Apart from six studies that specifically investigated Black and Latinx FCGs, most FCGs were middle-aged White female spouses. SDOH impacting PEOL care provision included: limited access to PEOL services due to remote distance and travel needs for services; low health literacy in medical terminology and patient symptom management; limited English-language proficiency; perceived clinician racial and ethnic discrimination; financial vulnerabilities affecting health care coverage; and underdeveloped infrastructure. These barriers negatively impacted decision making, communication with clinicians, and patient symptom management. FCGs reported emotional distress related to patients' symptom management and limited opportunities for respite. There was a limited investigation of emotional well-being and minimal interventions aimed toward improving rural-dwelling FCG emotional health. The presence of community support promoted hospice use and facilitated the provision of care. Conclusions: FCGs are vulnerable to adverse emotional health when providing home-based PEOL care. Research is needed to develop supportive interventions (e.g., digital health) for rural-dwelling FCGs.

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

BackgroundSocial 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...

Validity and reliability of Korean version of the nursing staff preparedness for palliative and end-of-life care in long-term care homes: A methodological study

Purpose: Globally, the issue of palliative and end-of-life care (PEOLC) in nursing homes is a common concern, and the need to measure the preparedness of nursing staff for end-of-life care is increasing. This study aimed to verify the validity and reliability of the Korean version of the self-reported scale for the Staff Preparedness for PEOLC in long-term care homes. Methods: A total of 161 staff took part in the study; among them were nine nurses, 19 nursing assistants, 133 care workers at four nursing homes located in Wonju and Suncheon cities, South Korea. The scale was translated according to the guidelines of World Health Organization guidelines and Consensus-Based Standards for the Selection of Health Measurement Instruments, and its reliability and validity were evaluated through assessing its internal consistency, stability, and construct validity (confirmatory factor analysis, CFA). Results: CFA confirmed that the measurement tool had a good fit (comparative fit index=.96, Turker-Lewis index=.95, root mean-squared error of approximation=.07). The items’ internal consistencies of the items were found to be reliable with Cronbach’s alpha=.94; the Pearson’s correlation coefficient between test and retest of the tool was .86 (p<.001); and the intraclass correlation coefficient value was .91 (95% confidence interval: .85~.96). Conclusion: The Korean version of the Staff Preparedness for PEOLC in long-term care homes was confirmed to be a useful and reliable scale for measuring the preparedness of nursing staff in Korean long-term care facilities in Korea for PEOLC.

Perspectives of Canadian health leaders on the relationship between medical assistance in dying and palliative and end-of-life care services: a qualitative study.

Medical assistance in dying (MAiD) was legalized in Canada in 2016, but coordination of MAiD and palliative and end-of-life care (PEOLC) services remains underdeveloped. We sought to understand the perspectives of health leaders across Canada on the relationship between MAiD and PEOLC services and to identify opportunities for improved coordination. In this quantitative study, we purposively sampled health leaders across Canada with expertise in MAiD, PEOLC, or both. We conducted semi-structured interviews between April 2021 and January 2022. Interview transcripts were coded independently by 2 researchers and reconciled to identify key themes using content analysis. We applied the PATH framework for Integrated Health Services to guide data collection and analysis. We conducted 36 interviews. Participants expressed diverse views about the optimal relationship between MAiD and PEOLC, and the desirability of integration, separation, or coordination of these services. We identified 11 themes to improve the relationship between the services across 4 PATH levels: client-centred services (e.g., educate public); health operations (e.g., cultivate compassionate and proactive leadership); health systems (e.g., conduct broad and inclusive consultation and planning); and intersectoral initiatives (e.g., provide standard practice guidelines across health care systems). Health leaders recognized that cooperation between MAiD and PEOLC services is required for appropriate referrals, care coordination, and patient care. They identified the need for public and provider education, standardized practice guidelines, relationship-building, and leadership. Our findings have implications for MAiD and PEOLC policy development and clinical practice in Canada and other jurisdictions.

Evaluating ICU nurses' education, practice, and competence in palliative and end-of-life care in Saudi Arabia: A cross-sectional study.

In palliative and end-of-life (PEOL) care, especially within intensive care units (ICUs), nurses' unique skills are critical, yet their expertise remains under-explored, particularly in Saudi Arabia. This study aimed to evaluate the education, practice, and perceived competence of adult ICU nurses in Saudi Arabia regarding PEOL care and to pinpoint key factors that influence this aspect of healthcare delivery. A cross-sectional design was utilized in this study. Participants were recruited from five public hospitals and one specialized center in Hail, Saudi Arabia. Data were gathered in September 2023 using the PEOL Care Index, which measures various care dimensions on a Likert scale in Arabic and English. IBM SPSS Statistics 29.0 was used for statistical analysis, particularly to conduct ANOVA, t-test, and multiple regression. 142 out of the targeted 171 ICU nurses completed the survey, yielding a response rate of 83.04%. Although 81% of the nurses had experience caring for dying patients, only 30.3% had received in-service PEOL care training. Those with this training demonstrated significantly higher scores in education, clinical practice, and perceived competence than their counterparts (p <0.05). Mean scores across these areas were 69.67, 71.01, and 71.61, respectively. In-service training positively correlated with these metrics (p <0.05). Multiple regressions also revealed that in-service training, job satisfaction, and communication authority are strong influencers, explaining 21.6% of the variation in clinical practice and 16.9% in perceived competence. The study highlighted the proficiency of ICU nurses in PEOL care, emphasizing that in-service training, job satisfaction, and the authority to communicate effectively with patients and their families significantly improved clinical practice and nurses' competence in PEOL care. This underlines the critical need for healthcare institutions to acknowledge and address these key factors to optimize patient care outcomes.

PALLIATIVE AND END-OF-LIFE CARE FOR OLDER ADULTS WITH EXPERIENCES OF HOMELESSNESS

Abstract Although palliative and end-of-life (PEOL) care offers many benefits to those with life-limiting illness, unhoused older adults face significant barriers in accessing these types of care. This symposium examines disparities in PEOL care, emerging services for disadvantaged older adults, and recommendations for capacity-building within healthcare, housing, and aging services. The first paper is an exploratory study of programs serving the PEOL care needs of unhoused adults with serious illnesses. The second paper is a mixed methods study that explores provider perspectives on approaches and challenges to addressing the PEOL care needs among unhoused individuals. The third paper uses the CBPR method photovoice to highlight the experiences of terminally ill patients accessing social model hospice care, a free option to facilitate access to hospice for unhoused older adults. In addition to well-established disparities in the prevalence of serious illness and access to palliative care among people with experiences of homelessness, limits and barriers to holistic support remain once housed. The fourth paper uses secondary data analysis of the Research and Supportive Care at Later-life for Unhoused People (RASCAL-UP) study to describe current practices, perceived barriers, and recommendations in permanent supportive housing for older residents with complex comorbidities. The final paper, also using secondary data analysis of the RASCAL-UP study, addresses the role of skilled nursing for palliative care patients with histories of homelessness. Together, findings illuminate challenges to providing PEOL care for unhoused older adults and those with prior experiences of homelessness, as well as opportunities to improve access to care. This is a Hospice, Palliative and End-of-Life Care Interest Group Sponsored Symposium.

Intersectionality factors and equitable end-of-life experiences: rapid review

BackgroundEfforts to minimise inequity in palliative and end-of-life care (PEoLC) are well-researched. This is frequently explained by differences related to singular factors. The concept of intersectionality recognises that the combination of variables exacerbates disparities.ObjectiveTo identify and review what is known about intersectionality’s impact on experiences of PEoLC, including advance care planning (ACP).MethodsA rapid review with a narrative summary of peer-reviewed articles. Six electronic databases were searched for studies explicitly exploring the role of intersectionality in the experience of PEoLC and ACP for people with life-limiting or terminal illnesses, published in the last 10 years.ResultsIdentifying eligible papers was challenging. Of the 3738 papers found, only seven were eligible. Of the seven included papers, four explored the impact of intersectionality on access to and attitudes towards ACP. Two studies involved access to PEoLC and one considered quality of care received in the last year of life.ConclusionsUnderstanding intersectionality is crucial for delivering personalised approaches to care and support. The relationship between intersecting factors and end-of-life experiences is complex and there is currently a paucity of studies considering this. The majority of existing literature addresses a narrow range of variables. Additionally, the lack of guidance on the application of intersectionality in research, makes it difficult to compare and synthesise findings. Further diverse action-orientated research is necessary to produce impactful evidence to inform future policy with the aim of reducing inequity in PEoLC.

Bundle of care to drive improvements in palliative and end-of-life care (PEOLC) in an acute tertiary hospital

ObjectivesThere is little evidence to suggest the best model of palliative and end-of-life care (PEOLC) in an acute care hospital. We introduced a bundle of care to drive improvements in...

Public Opinions about Palliative and End-of-life Care during the COVID-19 Pandemic: A Twitter-based Study.

Palliative and end-of-life care (PEoLC) played a critical role in relieving suffering and providing grief support in response to the heavy toll caused by the COVID-19 pandemic. However, little is known about public opinion concerning the PEoLC during the pandemic. Given that social media has the potential to collect real-time public opinions, analysis of this evidence is vital to guide future policymaking. To use social media data to investigate real-time public opinions toward PEoLC during the COVID-19 crisis, and explore the impact of the vaccine programme on public opinions about PEoLC. A Twitter-based study exploring tweets across three English-speaking countries - the United States, United Kingdom and Canada. From October 2020 to March 2021, 7,951 PEoLC-related tweets with geographical tags were retrieved and identified from a large-scale COVID-19 Twitter data set through Twitter API (Application Programming Interface). Topic modelling realized through a PMI-based co-occurrence network and Louvain Modularity was utilized to examine latent topics across countries and across two time periods (pre- and post-vaccination periods). Commonalities and regional differences between PEoLC topics in the United States, United Kingdom and Canada were identified specifically: (i) Cancer care and care facilities were of common interest to the public across three countries during the pandemic; (ii) The public expressed positive attitudes towards the vaccine and highlighted its protection to PEoLC professionals; (iii) Whilst Twitter users shared their personal experiences about PEoLC in the online community during the pandemic this was more prominent in the United States and Canada. The implementation of the vaccine program raised the profile of the vaccine discussion, however, this did not influence public opinions about PEoLC. Public opinions on Twitter reflected a need for enhanced Palliative and End-of-Life Care (PEoLC) services during the COVID-19 pandemic. The insignificant impact of the vaccine programme on public discussion on social media indicated that public concerns toward PEoLC continued to persist even after vaccination efforts. Insights gleaned from PEoLC public opinions could provide some clues for policymakers on how to ensure high-quality PEoLC during public emergencies. In this post-COVID-19 era, PEoLC professionals may wish to continue to examine social media and learn from online public discussion to ease the long-lasting trauma caused by this crisis and prepare for public health emergencies in the future. Besides, our results showed social media's potential in acting as an effective tool to reflect public opinions in the context of PEoLC.

Gaining a better understanding of the needs of rural cancer patients requiring in-home palliative and end-of-life care and nursing care and services.

Access to in-home palliative and end-of-life care (PELC), qualified professionals, and high-quality nursing care and services in rural areas is limited and unequal, thus leading to an increase in unmet needs across the care trajectory of cancer patients. A qualitative descriptive study was carried out to gain a better understanding of the needs of rural cancer patients receiving in-home PELC and to describe the nursing care and services available to them. Five rural cancer patients requiring PELC reported a variety of needs, especially those arising from limited information resources and multiple time- and energy-consuming back-and-forth trips to urban centres. Seven nurses who provide in-home care and services to rural inhabitants outlined the challenges they face in addressing these needs. These are related primarily to the long distances they are called upon to travel, the limited number of specialized professional resources available, transfers to emergency departments, the dearth of PELC training and the lack of a dedicated PELC team. These findings helped gain a better understanding of the specific needs of rural cancer patients requiring in-home PELC, as well as the challenges that nurses must confront to help their patients remain in their own homes.

PALLIATIVE AND END-OF-LIFE CARE INTERVENTIONS FOR INDIVIDUALS EXPERIENCING HOMELESSNESS: A SCOPING REVIEW

Abstract Despite the benefits of palliative and end-of-life (PEOL) care for individuals with life-limiting illness, barriers to accessing this care persist among older adults experiencing homelessness. A number of studies have identified barriers to PEOL care from the perspectives of unhoused individuals and other relevant stakeholders; however, few empirically studied interventions exist to support evidence-based guidelines for PEOL care for this population. This scoping review aimed to identify PEOL interventions for adults experiencing homelessness. The search was conducted in May 2021 and yielded 480 results, from which 50 full-text articles were closely reviewed for inclusion. Sources were included if they reported findings of original, empirical research or quality improvement projects evaluating PEOL services tailored for individuals experiencing homelessness. A total of 13 articles representing 12 studies published between 2006-2021 were included in the review. Over half (n = 7) of the studies described interventions to promote advance care planning documentation, five described interventions embedding PEOL services within homeless shelters, and one described a community outreach program to increase access to PEOL services. Nearly all studies reported positive outcomes on participant perspectives, advanced directive completion rates, or cost analysis. None of the studies included clinical palliative care outcomes. Although most studies reported promising results, service and healthcare providers expressed concerns about continuing challenges and longevity of the programs. The body of literature encompassing PEOL interventions for people experiencing homelessness is limited but growing. Future research may benefit from the inclusion of clinical outcomes and efforts to reduce structural barriers to providing care.

The Nature and Types of Community Palliative and end-of-Life Care Services: A Content Analysis of Service Provider Websites in Hong Kong.

To analyze the nature and types of community palliative and end-of-life care (PEoLC) services in Hong Kong in order to inform future service development. This cross-sectional descriptive study systematically searched the eligible websites of service providers concerning community PEoLC services for patients and their family caregivers using the Hong Kong version of the Google Search engine in August 2021. Search terms included different traditional Chinese translations of palliative care, end-of- lifecare, and hospice care. For the included websites, information regarding the characteristics and types of PEoLC services were extracted and coded using content analysis. Sixteen websites providing community PEoLC services were included in this analysis, which were almost all provided by non-governmental organizations (NGOs). Around half of the service providers targeted the geriatric group and served the population in some major geographic areas and districts only. Ten types of services were identified, including (1) information and advice; (2) psychological support; (3) dying and bereavement care; (4) spiritual support; (5) medical and nursing care; (6) leisure and social well-being activities; (7) support with household and other practical tasks; (8) referral resources; (9) financial support; and (10) caregiving skills training. Existing community PEoLC services in Hong Kong are provided mainly by NGOs, with a focus on comprehensive care for patients in some areas and districts but few support services for caregivers. There is a need for continued efforts to optimize the PEoLC services to support patients and caregivers locally.

Using Datix Electronic Incident Reporting System to Develop a Palliative and End-of-Life Care Patient-Centered Auditing, Quality Assessment and Reporting System

The need for specialist palliative care services has never been higher as the ongoing coronavirus disease (COVID) pandemic has highlighted. Yet even in the absence of the pandemic, specialist palliative care services in hospitals, hospices and within communities were already stretched beyond their capacity. The current fiscal climate within which most healthcare systems operate are undergoing global economic constraints making it a necessity that healthcare systems explore new ways of working to develop efficient high-quality services, maximising resources whilst maintaining good clinical governance. We describe how a hospital palliative and end-of-life care (PEoLC) specialist team, can harness an existing electronic incident reporting system Datix, adapting it to automatically track the longitudinal performance of the patient-centred, end-of-life care (EoLC) services that they deliver, along national standards in keeping with the Care Quality Commission (CQC) and the National Institute for Health and Excellence (NICE) guidelines for end-of-life care in the UK. Such automated systems can inform the quality of PEoLC services, improve the use of time and resource within specialist palliative care teams, support the delivery of evidence-based clinical governance standards, whilst supporting benchmarking across organisations, strategy development, insight into local/regional variations, and the establishment of standardisations of care.

Views of Care at End of Life: A Secondary Analysis of Online Feedback Using Care Opinion.

Although there are studies on the use of social media and palliative and end-of-life care (PEOLC), there are no studies specifically investigating the content of online public feedback about PEOLC services. This study sought to understand experiences of end-of-life care provided in hospitals in the West of Scotland by exploring the main themes within the content of stories posted on a nationally endorsed nonprofit feedback online platform, Care Opinion, within a 2-year period. We used “Appreciative Inquiry” as a theoretical framework for this study to determine what works well in end-of-life care, while also identifying areas for further improvement. Of the 1428 stories published on “Care Opinion” from March 2019 to 2021 regarding hospitals in the West of Scotland, 48 (3.36%) were related to end-of-life care, of which all were included in data analysis. Using the software package NVivo and thematic analysis, we identified 4 key themes. We found that people overwhelmingly posted positive feedback about their experiences with end-of-life care. People reported positively about staff professionalism in providing compassionate and person-centered care to meet their loved ones needs at end of life. Other experiences of care related to challenges facing healthcare services, particularly during the COVID-19 pandemic. Quality appraisal of staff responses highlighted areas for improving feedback. This study can add to the aim of improving staff response to people’s concerns about end-of-life care. This study has provided a novel perspective of patients’ experiences of end-of-life care in hospitals in the West of Scotland. Novel insights were the appreciation of quality of care, staff professionalism, effective communication, and meeting patient’s needs at end-of-life particularly by nursing staff.

Engaging Family Physicians in the Provision of Palliative and End-of-Life Care: Can We Do Better?

Background: Evidence shows the benefits of having a family physician (FP) at the heart of a care team that delivers palliative and end-of-life care (PEoLC). However, FPs have limitations on their ability to provide PEoLC.Objectives: We conducted a quality improvement study to (1) explore the barriers FPs encounter in providing PEoLC in our metropolitan context and (2) identify potential strategies to overcome these challenges.Methods: We interviewed a cohort of FPs from 10 different clinical practices within a metropolitan area (British Columbia [BC], Canada); this cohort is not regularly engaged with our Specialist Palliative Care Team. Verbatim transcripts were examined using inductive thematic analysis.Results: All FPs identified home visits as a critical aspect of being able to provide PEoLC. Despite this consensus, work-life balance, time, and compensation are major barriers to providing home visits and PEoLC. Local healthcare system awareness (available resources, why and how to access them) was identified as a barrier that can potentially be addressed through education sessions. Although 5 out of 10 FPs had not had formal palliative care education or training, clinical education was not considered a barrier to provide PEoLC.Conclusion: Providing FPs with tools and resources through education, including why and how to access them, and adjusting the BC compensation model to address home visit's travel time and time modifiers may better support FPs to provide PEoLC.

Using administrative health data for palliative and end of life care research in Ireland: potential and challenges.

Background: This study aims to examine the potential of currently available administrative health and social care data for palliative and end-of-life care (PEoLC) research in Ireland. Objectives include to i) identify data sources for PEoLC research ii) describe the challenges and opportunities of using these and iii) evaluate the impact of recent health system reforms and changes to data protection laws. Methods: The 2017 Health Information and Quality Authority catalogue of health and social care datasets was cross-referenced with a recognised list of diseases with associated palliative care needs. Criteria to assess the datasets included population coverage, data collected, data dictionary and data model availability, and mechanisms for data access. Results: Nine datasets with potential for PEoLC research were identified, including death certificate data, hospital episode data, pharmacy claims data, one national survey, four disease registries (cancer, cystic fibrosis, motor neurone and interstitial lung disease) and a national renal transplant registry. The ad hoc development of the health system in Ireland has resulted in i) a fragmented information infrastructure resulting in gaps in data collections particularly in the primary and community care sector where much palliative care is delivered, ii) ill-defined data governance arrangements across service providers, many of whom are not part of the publically funded health service and iii) systemic and temporal issues that affect data quality. Initiatives to improve data collections include introduction of i) patient unique identifiers, ii) health entity identifiers and iii) integration of the Eircode postcodes. Recently enacted general data protection and health research regulations will clarify legal and ethical requirements for data use. Conclusions: Ongoing reform initiatives and recent changes to data privacy laws combined with detailed knowledge of the datasets, appropriate permissions, and good study design will facilitate future use of administrative health and social care data for PEoLC research in Ireland.

Using administrative health data for palliative and end of life care research in Ireland: potential and challenges

Background: This study aims to examine the potential of currently available administrative health and social care data for palliative and end-of-life care (PEoLC) research in Ireland. Objectives include to i) identify data sources for PEoLC research ii) describe the challenges and opportunities of using these and iii) evaluate the impact of recent health system reforms and changes to data protection laws. Methods: The 2017 Health Information and Quality Authority catalogue of health and social care datasets was cross-referenced with a recognised list of diseases with associated palliative care needs. Criteria to assess the datasets included population coverage, data collected, data dictionary and data model availability, and mechanisms for data access. Results: Nine datasets with potential for PEoLC research were identified, including death certificate data, hospital episode data, pharmacy claims data, one national survey, four disease registries (cancer, cystic fibrosis, motor neurone and interstitial lung disease) and a national renal transplant registry. The ad hoc development of the health system in Ireland has resulted in i) a fragmented information infrastructure resulting in gaps in data collections particularly in the primary and community care sector where much palliative care is delivered, ii) ill-defined data governance arrangements across service providers, many of whom are not part of the publically funded health service and iii) systemic and temporal issues that affect data quality. Initiatives to improve data collections include introduction of i) patient unique identifiers, ii) health entity identifiers and iii) integration of the Eircode postcodes. Recently enacted general data protection and health research regulations will clarify legal and ethical requirements for data use. Conclusions: Ongoing reform initiatives and recent changes to data privacy laws combined with detailed knowledge of the datasets, appropriate permissions, and good study design will facilitate future use of administrative health and social care data for PEoLC research in Ireland.

Lean in, don’t step back: The views and experiences of patients and carers with severe mental illness and incurable physical conditions on palliative and end of life care

Background and Aim: People with severe mental illness (SMI) have a life expectancy of up to twenty years less than the general population and many live with incurable physical health conditions. Yet, they continue to experience barriers when trying to access palliative and end of life care (PEOLC). Little research has been carried out which includes the views and experiences of people with SMI, and this study presents first findings which include people with both SMI and an incurable condition and their carers. It aimed to seek their views, and those of their carers, on their experiences and expectations of accessing PEOLC and to understand how PEOLC for people with SMI could be improved. Methods: Semi-structured interviews were carried out with 8 participants (5 patient participants and 3 carer participants). Thematic analysis of the interview transcripts was undertaken. Findings: Four over-arching themes were developed. (1) Stigma and Prejudice – See Me, Not My Diagnosis (2) Hesitancy and Avoidance – Treading on Eggshells (3) Collaborators in Care – The Ignored Experts and (4) Connections – Leaning in, Not Stepping Back. Significance of Findings: This study presents the first accounts from the UK concerning experiences of PEOLC, barriers to access and how care can be improved, from the perspectives of patients with both a SMI and an incurable physical condition and their carers. The findings illuminate an under-researched area of clinical practice and contribute rich understandings to future service developments and innovations.

Using linked administrative health data for palliative and end of life care research in Ireland: potential and challenges.

Background: This study aims to examine the potential of currently available administrative health data for palliative and end-of-life care (PEoLC) research in Ireland. Objectives include to i) identify administrative health data sources for PEoLC research ii) describe the challenges and opportunities of using these and iii) estimate the impact of recent health system reforms and changes to data protection laws. Methods: The 2017 Health Information and Quality Authority catalogue of health and social care datasets was cross-referenced with a recognised list of diseases with associated palliative care needs. Criteria to assess the datasets included population coverage, data collected, data dictionary and data model availability and mechanisms for data access. Results: Eight datasets with potential for PEoLC research were identified, including four disease registries, (cancer, cystic fibrosis, motor neurone and interstitial lung disease), death certificate data, hospital episode data, community prescription data and one national survey. The ad hoc development of the health system in Ireland has resulted in i) a fragmented information infrastructure resulting in gaps in data collections particularly in the primary and community care sector where much palliative care is delivered, ii) ill-defined data governance arrangements across service providers, many of whom are not part of the publically funded health service and iii) systemic and temporal issues that affect data quality. Initiatives to improve data collections include introduction of i) patient unique identifiers, ii) health entity identifiers and iii) integration of the eircode postcodes. Recently enacted general data protection and health research regulations will clarify legal and ethical requirements for data use. Conclusions: With appropriate permissions, detailed knowledge of the datasets and good study design currently available administrative health data can be used for PEoLC research. Ongoing reform initiatives and recent changes to data privacy laws will facilitate future use of administrative health data for PEoLC research.