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IntroductionA high proportion of deaths occur in hospitals in Scotland. To improve care for the dying, it is imperative to measure the quality of care. However, there is no consensus on the optimal tool or timing post-bereavement to assess end-of-life care in hospitals.MethodsThis was a participatory action research study guided by the principles of ‘Appreciative Inquiry' that sought to explore views of care at end of life in partnership with patients, relatives, and healthcare staff and co-create, and evaluate a real-time feedback tool to improve quality of care in acute hospitals in NHS Greater Glasgow and Clyde. In the exploratory phase of the study, in accordance with ‘diagnosing' and ‘action planning' of the action research cycle, we conducted a rapid meta systematic review, analysed people stories on Care Opinion, a nationally endorsed non-profit feedback online platform, and interviewed to patients with life-limiting conditions bereaved relatives), clinical and non-clinical staff about their views of care at the end-of-life and how we can improve communication with people who are at the end-of-life. In the ‘Action' and ‘Evaluation' phases, we recruited seven wards with the highest mortality rate across NHS Greater Glasgow and Clyde to test and evaluate the feedback tools chosen by the participants in the first phase of the study.ResultsFindings from the exploratory phase showed that the study participants had a positive insight to staff professionalism in providing compassionate and dignified care and family support. Areas needing improvement included staffing pressure and communication affected by multiple factors including COVID-19. However, such problems should be fed back to hospitals in order to identify causes and prompt improvement. In terms of finding out the best ways of getting feedback from patients and their family members. We tested 2 tools: ‘condolence' phone call from the area where the person who mattered to them died and ‘Care Of the Dying Evaluation' (CODE) questionnaire. Recommendations for future practice will include the tools with some modifications.ConclusionGood quality of end-of-life care and quality of dying in terminally ill patients impacts bereavement for families and had a ripple effect for patients, staff and families. The challenging time of the covid 19 pandemic compounded end of life issues. Findings from this study will guide the implementation of a patient and family feedback tool into practice across NHS Greater Glasgow and Clyde and wider in Scotland aimed at achieving a good quality of dying for patients with life-limiting condition and post-bereavement support for bereaved relatives.
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IntroductionIn Scotland, there is an increasing focus on patient experience as an aspect of patient safety and quality improvement. However, there are limited studies specifically investigating the content of online public feedback about palliative and end-of-life care 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.MethodsAn ‘Appreciative Inquiry' lens was chosen to guide this study to determine what works well in end-of-life care, while also identifying areas for further improvement. We gathered and thematically analysed public feedback stories, and their associated staff responses, posted on Care Opinion Scotland over a 24-month period (March 2019 to 2021) relevant to end-of-life care provided in acute hospitals the Greater Glasgow and Clyde area.ResultsOf 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. We found that people tended to post 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. Nevertheless, 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. Despite research suggesting conversational responses are more desirable by service users, they were the least popular type of responses in our sample and were mostly from negative stories. In contrast, appreciative responses were commonly from families reporting positively about their experiences of end-of-life care.ConclusionThis study has provided a novel perspective of patients' experiences of end-of-life care in hospitals in the West of Scotland. Novel insights were importance of trust and meeting patient's needs at end-of-life particularly by nursing staff.
ABSTRACT
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.
ABSTRACT
BackgroundCOVID-19 represents a mass bereavement event, with 80,000+ excess UK deaths. The unprecedented clinical and social restrictions are potential risk factors for poor bereavement outcomes. This study investigates the bereavement experiences, support needs and support use of people bereaved during the pandemic.MethodsInterim findings from the first round of a mixed methods longitudinal survey of people bereaved in the UK since 16March 2020. The survey was disseminated via media, social media, national associations and community/charitable organisations. Grief was assessed using the Adult Attitude to Grief Scale.Results532 bereaved people participated (91% female). Place of death: hospital (55%), home (22%), care home (15%), hospice (5%);46% of deaths were confirmed/suspected COVID-19. Experiences of end of life care varied: 23% were ‘never’ involved in decisions about their loved one’s care, 36% felt ‘not at all’ supported by healthcare professionals after the death, 51% were not provided with information about bereavement support. Respondents reported high levels of problems specific to the pandemic bereavement context (e.g. 56% unable to visit prior to death, 67% social isolation and loneliness). Over half of participants demonstrated ‘severe’ (28%) or ‘high’ (24%) levels of vulnerability in grief, and support needs were high/fairly high in six psycho-emotional domains (51% to 62%). COVID-19 deaths were associated with higher levels of bereavement problems (p<0.05), grief vulnerability (p<0.05) and support needs (P< 0.001) compared to other causes of death. 21% of those with ‘severe’ vulnerability were accessing individual counselling, compared with 23% overall. Barriers to accessing professional support included long waiting lists, lack of appropriate support, feeling uncomfortable asking for/not knowing how to access help. 41% reported difficulties getting support from family/friends.ConclusionsPeople bereaved during the pandemic experience exceptionally difficult circumstances at the end of life and during bereavement, including unmet needs for social and professional support. We recommend improved communication with families at the end of life, enabling contact with patients as far as possible, and better support after a death. This includes increased information about and investment in bereavement support services as well as flexible ‘support bubble’ arrangements for the recently bereaved.
ABSTRACT
All over the world, health systems are responding to the major shock of the COVID-19 pandemic. The virus is causing urgent and fast-paced change in the delivery of health and social care as well as highlighting pre-existing deficiencies and inequalities in the health system and broader society. In Ireland, COVID-19 is occurring during the second full year of Sláintecare's implementation - Ireland's 10-year plan for health reform to deliver universal access to timely, integrated care. This research will coproduce a Living Implementation Framework with Evaluation (LIFE) linking evidence, policy and practice that feeds into real-world Sláintecare implementation. In partnership with senior leadership in the Sláintecare Programme Implementation Office, the Department of Health and the HSE, the researchers will scope, document, measure and analyse the Sláintecare relevant COVID-19 responses using qualitative and quantitative methods. The LIFE will initially take the form of a live spreadsheet which contains the COVID-19 responses most relevant to Sláintecare. For each response, 3-4 indicators will be collected which enables monitoring overtime. The spreadsheet will be accompanied by a series of rapid reviews, narrative descriptions of multiple case studies, research papers, stakeholder engagement and formative feedback. These collectively make up the 'LIFE', informing dialogue with the project partners, which is happening in real time (living), influencing health policy and system decision-making and implementation as the project progresses. The LIFE will inform health system reform in Ireland in the months and years after the emergence of COVID-19 as well as contributing to international health systems and policy research.
ABSTRACT
The Sláintecare report developed by political consensus sets out a ten year plan for achieving Universal Health Care (UHC) in Ireland. This paper evaluates the design and progress of the report to mid 2020, but with some reflection on the new COVID 19 era, particularly as it relates to the expansion of entitlements to achieve UHC. The authors explore how close Sláintecare is to the UHC ideal. They also review the phased strategy of implementation in Sláintecare that utilises a systems-thinking approach with interlinkages between entitlements, funding, capacity and implementation. Finally the authors review the Sláintecare milestones against the reality of implementation since the publication of the report in 2017, cognisant of government policy and practice. Some of the initial assumptions around the context of Sláintecare were not realised and there has been limited progress made toward expanding entitlements, and certainly short of the original plan. Nevertheless there have been positive developments in that there is evidence that Government's Implementation Strategy and Action Plans are focussing on reforming a complex adaptive system rather than implementing a blueprint with such initiatives as integrated care pilots and citizen engagement. The authors find that this may help the system change but it risks losing some of the essential elements of entitlement expansion in favour of organisational change.
Subject(s)
Health Care Reform/economics , Health Plan Implementation/economics , Health Policy , Universal Health Care , COVID-19 , Health Expenditures , Humans , Ireland , Policy MakingABSTRACT
BACKGROUND: Patients hospitalised with COVID-19 have increased morbidity and mortality, which requires extensive involvement of specialist Hospital Palliative Care Teams. Evaluating the response to the surge in demand for effective symptom management can enhance provision of Palliative Care in this patient population. AIM: To characterise the symptom profile, symptom management requirements and outcomes of hospitalised COVID-19 positive patients referred for Palliative Care, and to contextualise Palliative Care demands from COVID-19 against a 'typical' caseload from 2019. DESIGN: Service evaluation based on a retrospective cohort review of patient records. SETTING/PARTICIPANTS: One large health board in Scotland. Demographic data, patient symptoms, drugs/doses for symptom control, and patient outcomes were captured for all COVID-19 positive patients referred to Hospital Palliative Care Teams between 30th March and 26th April 2020. RESULTS: Our COVID-19 cohort included 186 patients (46% of all referrals). Dyspnoea and agitation were the most prevalent symptoms (median 2 symptoms per patient). 75% of patients were prescribed continuous subcutaneous infusion for symptom control, which was effective in 78.6% of patients. Compared to a 'typical' caseload, the COVID-19 cohort were on caseload for less time (median 2 vs 5 days; p < 0.001) and had a higher death rate (80.6% vs 30.3%; p < 0.001). The COVID-19 cohort replaced 'typical' caseload; overall numbers of referrals were not increased. CONCLUSIONS: Hospitalised COVID-19 positive patients referred for Palliative Care may have a short prognosis, differ from 'typical' caseload, and predominantly suffer from dyspnoea and agitation. Such symptoms can be effectively controlled with standard doses of opioids and benzodiazepines.