Reaching for the rainbow: Person-centred practice in palliative care

Erna Haraldsdottir - ORCID 0000-0003-4891-0743 https://orcid.org/0000-0003-4891-0743Brendan McCormack - ORCID 0000-0001-8525-8905 https://orcid.org/0000-0001-8525-8905Background: Person-centred practice is inherently integrated in palliative care. However, it cannot be assumed that its underpinning values are lived out in day-to-day practice in a hospice. At St Columba’s Hospice, Edinburgh, the five-year strategy demonstrated commitment to person-centredness and this prompted an 18-month project focusing on the evaluation and development of a person-centred culture, taking a practice development approach.Aim: To implement a person-centred practice development research project to assess, evaluate and enhance person-centred culture within St Columba’s Hospice.Methods: The theoretical underpinnings of the programme were based on the Person-centred Practice Framework. A transformative practice development approach was employed to bring about change in individuals and teams. Twelve multidisciplinary team members from different departments across the hospice formed a core research project group, which was allocated 10 protected learning and development days over the 18-month period. To assess the existing culture, data were collected at the beginning of the practice development programme, including observation in practice and real-time interviews with patients and staff. The data were analysed using a participatory approach, with group members mapping the data collected against the Person-centred Practice Framework and undertaking creative hermeneutic analysis.Discussion: The project created and sustained a space to explore and expose person-centredness within the hospice and raised awareness of what person-centred culture means in day-to-day practice. Fourth-generation evaluation highlighted further areas for action, with teams developing their own action plans aimed at enhancing person-centred culture.Conclusion and implications for practice: The context of day-to-day practice in a hospice setting is complex, and developing person-centred culture is an ongoing process. Hospices can help their staff to flourish by providing the necessary space to reflect and for critical awareness of own practices to be heightened. This could encourage staff to embrace the contradictions inherent in the work they undertake and to learn from it in order to improve their own wellbeing.https://doi.org/10.19043/ipdj.101.00510pubpub

Dying at home during the pandemic.

Data from the Office for National Statistics show that covid-19 was responsible for most of the 76 000 excess deaths during 2020 in England and Wales, with only around 2000 attributable to other causes. The number of deaths from all causes in private homes increased by about one third to 167 000 in 2020, compared with an average of 125 000 between 2015 and 2019

Inclusion of palliative and end of life care in health strategies aimed at integrated care: a documentary analysis [version 2; peer review: 2 approved]

Background: In England, Integrated Care Systems have been established to improve integration of care, as part of the NHS Long Term Plan. For people near the end of life, palliative care can improve integration of care. We aimed to understand whether and how palliative and end of life care was included in Integrated Care System strategies, and to consider priorities for strengthening this.Methods: Documentary analysis of Integrated Care System (ICS) strategies, using summative content analysis, was performed. Google searches were used to identify NHS Trust, Clinical Commissioning Group or ICS websites. We searched these websites to identify strategies. Key terms were used to identify relevant content. Themes were mapped onto an adapted logic model for integrated care.Results: 23 Integrated Care System strategy documents were identified. Of these, two did not mention any of the key terms, and six highlighted palliative and end of life care as either a priority, area of focus, or an ambition. While most (19/23) strategies included elements that could be mapped onto the adapted logic model for integrated care, the thread from enablers and components, to structures, processes, outcomes, and impact was incomplete.Conclusions: Greater prioritisation of palliative and end of life care within recently established Integrated Care Systems could improve outcomes for people near the end of life, as well as reduce reliance on acute hospital care. Integrated Care Systems should consider involving patients, the public and palliative care stakeholders in the ongoing development of strategies. For strategies to be effective, our adapted logic model can be used to outline how different components of care fit together to achieve defined outcomes and impact

Implementing patient-centred outcome measures in palliative care clinical practice for adults (IMPCOM): Protocol for an update systematic review of facilitators and barriers

Background: Despite the development of patient-centred or patient-reported outcome measures (PCOMs or PROMs) in palliative and end-of-life care over recent years, their routine use in practice faces continuing challenges. Objective: To update a highly cited literature review, identify and synthesise new evidence on facilitators, barriers, lessons learned, PCOMs used, models of implementation, implementation outcomes, costs, and consequences of implementing PCOMs in palliative care clinical practice. Methods: We will search MEDLINE, PsycINFO, CINAHL, Embase, Emcare, SCI-Expanded, SSCI, ESCI, and BNI. The database search will be supplemented by a list of studies from the expert advisory committee, hand-searching of reference lists for included articles, and citations of the original review. We will include primary studies using a PCOM during clinical care of adult patients with advanced disease in palliative care settings and extract data on reported models of implementation, PCOMs, facilitators, barriers, lessons learned, costs, and implementation outcomes. Gough’s Weight of Evidence Framework will be used to assess the robustness and relevance of the studies. We will narratively synthesise and tabulate the findings. This review will follow PRISMA, PRISMA-Abstract, PRISMA-P, and PRISMA-Search as the reporting guidelines. Source of funding: Marie Curie. The funder is not involved in designing or conducting this study. Protocol registration: CRD42023398653 (13/02/2023

Person centred culture in a hospice: myth or reality? (Poster presentation)

Background: Person centred care is inherently integrated into palliative care as one of its cornerstones. Having developed from a pioneering grass route movement to an established organisational structure the culture of palliative care has become increasingly influenced by routine and the need for standardised practice. This has challenged the capacity to foster creative, flexible and dynamic approaches to care that put the person at the centre. McCormack and McCance’s Person Centred Practice Framework (2017) is a theoretical framework that addresses such limitations. Using this framework as an underpinning theory in our research we aimed to assess and develop a person centred culture in a hospice.sch_nur8pub5357pubSuppl

Historical Trajectories of Disaster Risk in Dominica

The calamitous consequences of 2017 Hurricane Maria for the Caribbean island of Dominica highlighted the acute and increasing susceptibility of the region to disasters. Despite increasing international attention to disaster risk reduction, recovery from hazard events can be especially lengthy and difficult for small island developing states. In this article, we build on existing understandings of disaster risk as a physical and social condition, showing that historical processes are fundamental to understanding how conditions of risk emerge and persist over time. We take an integrated approach to analyzing the drivers of risk accumulation, using the example of Dominica, where processes set in motion during the colonial period have shaped the location of people and assets, the degree to which they might be harmed, the societal repercussions of that harm and the prospects for recovery. We focus on the underlying economic vulnerabilities and physical exposure to hazards created by agricultural, economic, and social practices, and successive disaster responses that have constrained recovery. Uncovering these historical drivers and persistent issues, elucidates lessons for pursuing a more resilient development trajectory, including through the promotion of economic restructuring and diversification, and land reform

Low dose influenza virus challenge in the ferret leads to increased virus shedding and greater sensitivity to oseltamivir

Ferrets are widely used to study human influenza virus infection. Their airway physiology and cell receptor distribution makes them ideal for the analysis of pathogenesis and virus transmission, and for testing the efficacy of anti-influenza interventions and vaccines. The 2009 pandemic influenza virus (H1N1pdm09) induces mild to moderate respiratory disease in infected ferrets, following inoculation with 106 plaque-forming units (pfu) of virus. We have demonstrated that reducing the challenge dose to 102 pfu delays the onset of clinical signs by 1 day, and results in a modest reduction in clinical signs, and a less rapid nasal cavity innate immune response. There was also a delay in virus production in the upper respiratory tract, this was up to 9-fold greater and virus shedding was prolonged. Progression of infection to the lower respiratory tract was not noticeably delayed by the reduction in virus challenge. A dose of 104 pfu gave an infection that was intermediate between those of the 106 pfu and 102 pfu doses. To address the hypothesis that using a more authentic low challenge dose would facilitate a more sensitive model for antiviral efficacy, we used the well-known neuraminidase inhibitor, oseltamivir. Oseltamivir-treated and untreated ferrets were challenged with high (106 pfu) and low (102 pfu) doses of influenza H1N1pdm09 virus. The low dose treated ferrets showed significant delays in innate immune response and virus shedding, delayed onset of pathological changes in the nasal cavity, and reduced pathological changes and viral RNA load in the lung, relative to untreated ferrets. Importantly, these observations were not seen in treated animals when the high dose challenge was used. In summary, low dose challenge gives a disease that more closely parallels the disease parameters of human influenza infection, and provides an improved pre-clinical model for the assessment of influenza therapeutics, and potentially, influenza vaccines

Changes in mortality patterns and place of death during the COVID-19 pandemic:A descriptive analysis of mortality data across four nations

Background: Understanding patterns of mortality and place of death during the COVID-19 pandemic is important to help provide appropriate services and resources. Aims: To analyse patterns of mortality including place of death in the United Kingdom (UK) (England, Wales, Scotland and Northern Ireland) during the COVID-19 pandemic to date. Design: Descriptive analysis of UK mortality data between March 2020 and March 2021. Weekly number of deaths was described by place of death, using the following definitions: (1) expected deaths: average expected deaths estimated using historical data (2015–19); (2) COVID-19 deaths: where COVID-19 is mentioned on the death certificate; (3) additional non-COVID-19 deaths: above expected but not attributed to COVID-19; (4) baseline deaths: up to and including expected deaths but excluding COVID-19 deaths. Results: During the analysis period, 798,643 deaths were registered in the UK, of which 147,282 were COVID-19 deaths and 17,672 were additional non-COVID-19 deaths. While numbers of people who died in care homes and hospitals increased above expected only during the pandemic waves, the numbers of people who died at home remained above expected both during and between the pandemic waves, with an overall increase of 41%. Conclusions: Where people died changed during the COVID-19 pandemic, with an increase in deaths at home during and between pandemic waves. This has implications for planning and organisation of palliative care and community services. The extent to which these changes will persist longer term remains unclear. Further research could investigate whether this is reflected in other countries with high COVID-19 mortality

Provision of palliative and end-of-life care in UK care homes during the COVID-19 pandemic: A mixed methods observational study with implications for policy

© 2023 Bradshaw, Ostler, Goodman, Batkovskyte, Ellis-Smith, Tunnard, Bone, Barclay, Vernon, Higginson, Evans and Sleeman. This is an open-access article distributed under the terms of the Creative Commons Attribution License (CC BY). https://creativecommons.org/licenses/by/4.0/Introduction: Little consideration has been given to how the provision of palliative and end-of-life care in care homes was affected by COVID-19. The aims of this study were to: (i) investigate the response of UK care homes in meeting the rapidly increasing need for palliative and end-of-life care during the COVID-19 pandemic and (ii) propose policy recommendations for strengthening the provision of palliative and end-of-life care within care homes. Materials and methods: A mixed methods observational study was conducted, which incorporated (i) an online cross-sectional survey of UK care homes and (ii) qualitative interviews with care home practitioners. Participants for the survey were recruited between April and September 2021. Survey participants indicating availability to participate in an interview were recruited using a purposive sampling approach between June and October 2021. Data were integrated through analytic triangulation in which we sought areas of convergence, divergence, and complementarity. Results: There were 107 responses to the survey and 27 interviews. We found that (i) relationship-centered care is crucial to high-quality palliative and end-of-life care within care homes, but this was disrupted during the pandemic. (ii) Care homes' ability to maintain high-quality relationship-centered care required key “pillars” being in place: integration with external healthcare systems, digital inclusion, and a supported workforce. Inequities within the care home sector meant that in some services these pillars were compromised, and relationship-centered care suffered. (iii) The provision of relationship-centered care was undermined by care home staff feeling that their efforts and expertise in delivering palliative and end-of-life care often went unrecognized/undervalued. Conclusion: Relationship-centered care is a key component of high-quality palliative and end-of-life care in care homes, but this was disrupted during the COVID-19 pandemic. We identify key policy priorities to equip care homes with the resources, capacity, and expertise needed to deliver palliative and end-of-life care: (i) integration within health and social care systems, (ii) digital inclusivity, (iii) workforce development, (iv) support for care home managers, and (v) addressing (dis)parities of esteem. These policy recommendations inform, extend, and align with policies and initiatives within the UK and internationally.Peer reviewe

Telephone advice lines for adults with advanced illness and their family carers: a qualitative analysis and novel practical framework

BackgroundTelephone advice lines have been recommended internationally to support around-the-clock care for people living at home with advanced illness. While they undoubtedly support care, there is little evidence about what elements are needed for success. A national picture is needed to understand, improve and standardise service delivery/care. Aim To explore telephone advice lines for people living at home with advanced illness across the four UK nations, and to construct a practical framework to improve services.DesignA cross-national evaluation of telephone advice lines using structured qualitative interviews. A patient and public involvement workshop was conducted to refine the framework.Setting/participantsProfessionals with responsibilities for how palliative care services are delivered and/or funded at a local or regional level, were purposively sampled. ResultsSeventy-one interviews were conducted, covering 60 geographical areas. Five themes were identified. Availability: Ten advice line models were described. Variation led to confusion about who to call and when. Accessibility, awareness and promotion: It was assumed that patients/carers know who to call out-of-hours, but often they did not. Practicalities: Call handlers skills/expertise varied, which influenced how calls were managed. Possible responses ranged from signposting to organising home visits. Integration/continuity of care: Integration between care providers was limited by electronic medical records access/information sharing. Service structure/commissioning: Sustained funding was often an issue for charitably funded organisations.ConclusionsOur novel evidence-based practical framework could be transformative for service design/delivery, as it presents key considerations relating to the various elements of advice lines that may impact on the patient/carer experience