Addressing inequity in palliative care provision for older people living with multimorbidity. Perspectives of community-dwelling older people on their palliative care needs: A scoping review.

BACKGROUND: Older people living with multimorbidity are projected to become the main recipients of palliative care in the coming decades, yet there is limited evidence regarding their expressed palliative care needs to inform person-centred care. AIM: To understand the palliative care needs of community-dwelling people aged ⩾60 living with multimorbidity in the last 2 years of life. DESIGN: A scoping review following Arksey and O'Malley. DATA SOURCES: Three international electronic databases (CINAHL, Ovid Medline, PsycINFO) were searched from March 2018 to December 2021. Reference lists were hand searched. Eligible papers were those reporting empirical data on older people's needs. RESULTS: From 985 potential papers, 28 studies were included, published between 2002 and 2020; sixteen quantitative, nine qualitative and three mixed methods. Data were extracted and presented under the holistic palliative care domains of need: physical, psychological, social, spiritual, and additionally practical needs. Different measurement tools (n = 29) were used, of which 20 were multidimensional. Primacy in reporting was given to physical needs, most commonly pain and function. Social and practical needs were often prioritised by older people themselves, including maintaining social connections and accessing and receiving individualised care. CONCLUSION: Identifying the palliative care needs that matter most to older people with multimorbidity requires the recognition of their concerns, as well as their symptoms, across a continuum of living and dying. Available evidence is superficial. Supporting end of life provision for this growing and underserved population necessitates a shift to tailored multidimensional tools and community focussed integrated care services.

Common elements of service delivery models that optimise quality of life and health service use among older people with advanced progressive conditions: a tertiary systematic review.

INTRODUCTION: Health and social care services worldwide need to support ageing populations to live well with advanced progressive conditions while adapting to functional decline and finitude. We aimed to identify and map common elements of effective geriatric and palliative care services and consider their scalability and generalisability to high, middle and low-income countries. METHODS: Tertiary systematic review (Cochrane Database of Systematic Reviews, CINAHL, Embase, January 2000-October 2019) of studies in geriatric or palliative care that demonstrated improved quality of life and/or health service use outcomes among older people with advanced progressive conditions. Using frameworks for health system analysis, service elements were identified. We used a staged, iterative process to develop a 'common components' logic model and consulted experts in geriatric or palliative care from high, middle and low-income countries on its scalability. RESULTS: 78 studies (59 geriatric and 19 palliative) spanning all WHO regions were included. Data were available from 17 739 participants. Nearly half the studies recruited patients with heart failure (n=36) and one-third recruited patients with mixed diagnoses (n=26). Common service elements (≥80% of studies) included collaborative working, ongoing assessment, active patient participation, patient/family education and patient self-management. Effective services incorporated patient engagement, patient goal-driven care and the centrality of patient needs. Stakeholders (n=20) emphasised that wider implementation of such services would require access to skilled, multidisciplinary teams with sufficient resource to meet patients' needs. Identified barriers to scalability included the political and societal will to invest in and prioritise palliative and geriatric care for older people, alongside geographical and socioeconomic factors. CONCLUSION: Our logic model combines elements of effective services to achieve optimal quality of life and health service use among older people with advanced progressive conditions. The model transcends current best practice in geriatric and palliative care and applies across the care continuum, from prevention of functional decline to end-of-life care. PROSPERO REGISTRATION NUMBER: CRD42020150252.

The importance of living well now and relationships: A qualitative study of the barriers and enablers to engaging frail elders with advance care planning.

BACKGROUND: The population of frail elders is growing, and due to their vulnerability to sudden deterioration, advance care planning is particularly important. However, advance care planning is uncommon for multiple reasons, some of which are linked to the perceptions of frail elders and their families. AIM: To explore the barriers and enablers to advance care planning engagement with frail elders. DESIGN: Qualitative in-depth interviews with thematic analysis. SETTING/PARTICIPANTS: Purposive sample of 10 frail elders and 8 nominated family members using a community-based older persons' service run by a large urban UK hospice. Frail elders had capacity, were ⩾65 (median 85, range 71-95), scored 6 or 7 (median 6.5) on the Clinical Frailty Scale, and 70% were female. RESULTS: Key barriers were: Advance care planning is unclear, in terms of meaning and the language used; Lack of relevance, with frail elders preferring to focus on living well now; and the Importance of family, relationships and home, and the influence of relationship on end of life decision-making. Engagement strategies included preparing the frail elder for advance care planning conversations and using a gentle, honest, individualised approach. CONCLUSIONS: Essential enablers for frail elders are understanding what advance care planning is and why it may be relevant to them. For professionals, enablers include recognising the importance of living well now and relational decision-making. To further support advance care planning, recommendations include early engagement and re-conceptualising advance care planning as an ongoing process which encompasses current and future care. Further research is needed in different cultures and care contexts.

What feedback do reviewers give when reviewing qualitative manuscripts? A focused mapping review and synthesis.

BACKGROUND: Peer review is at the heart of the scientific process. With the advent of digitisation, journals started to offer electronic articles or publishing online only. A new philosophy regarding the peer review process found its way into academia: the open peer review. Open peer review as practiced by BioMed Central (BMC) is a type of peer review where the names of authors and reviewers are disclosed and reviewer comments are published alongside the article. A number of articles have been published to assess peer reviews using quantitative research. However, no studies exist that used qualitative methods to analyse the content of reviewers' comments. METHODS: A focused mapping review and synthesis (FMRS) was undertaken of manuscripts reporting qualitative research submitted to BMC open access journals from 1 January - 31 March 2018. Free-text reviewer comments were extracted from peer review reports using a 77-item classification system organised according to three key dimensions that represented common themes and sub-themes. A two stage analysis process was employed. First, frequency counts were undertaken that allowed revealing patterns across themes/sub-themes. Second, thematic analysis was conducted on selected themes of the narrative portion of reviewer reports. RESULTS: A total of 107 manuscripts submitted to nine open-access journals were included in the FMRS. The frequency analysis revealed that among the 30 most frequently employed themes "writing criteria" (dimension II) is the top ranking theme, followed by comments in relation to the "methods" (dimension I). Besides that, some results suggest an underlying quantitative mindset of reviewers. Results are compared and contrasted in relation to established reporting guidelines for qualitative research to inform reviewers and authors of frequent feedback offered to enhance the quality of manuscripts. CONCLUSIONS: This FMRS has highlighted some important issues that hold lessons for authors, reviewers and editors. We suggest modifying the current reporting guidelines by including a further item called "Degree of data transformation" to prompt authors and reviewers to make a judgment about the appropriateness of the degree of data transformation in relation to the chosen analysis method. Besides, we suggest that completion of a reporting checklist on submission becomes a requirement.

Implementing advance care planning with community-dwelling frail elders requires a system-wide approach: An integrative review applying a behaviour change model.

BACKGROUND: Facilitating advance care planning with community-dwelling frail elders can be challenging. Notably, frail elders' vulnerability to sudden deterioration leads to uncertainty in recognising the timing and focus of advance care planning conversations. AIM: To understand how advance care planning can be better implemented for community-dwelling frail elders and to develop a conceptual model to underpin intervention development. DESIGN: A structured integrative review of relevant literature. DATA SOURCES: CINAHL, Embase, Ovid Medline, PsycINFO, Cochrane Library, and University of York Centre for Reviews and Dissemination. Further strategies included searching for policy and clinical documents, grey literature, and hand-searching reference lists. Literature was searched from 1990 until October 2018. RESULTS: From 3043 potential papers, 42 were included. Twenty-nine were empirical, six expert commentaries, four service improvements, two guidelines and one theoretical. Analysis revealed nine themes: education and training, personal ability, models, recognising triggers, resources, conversations on death and dying, living day to day, personal beliefs and experience, and relationality. CONCLUSION: Implementing advance care planning for frail elders requires a system-wide approach, including providing relevant resources and clarifying responsibilities. Early engagement is key for frail elders, as is a shift from the current advance care planning model focussed on future ceilings of care to one that promotes living well now alongside planning for the future. The proposed conceptual model can be used as a starting point for professionals, organisations and policymakers looking to improve advance care planning for frail elders.

Service Delivery Models to Maximize Quality of Life for Older People at the End of Life: A Rapid Review.

Policy Points We identified two overarching classifications of integrated geriatric and palliative care to maximize older people's quality of life at the end of life. Both are oriented to person-centered care, but with differing emphasis on either function or symptoms and concerns. Policymakers should both improve access to palliative care beyond just the last months of life and increase geriatric care provision to maintain and optimize function. This would ensure that continuity and coordination for potentially complex care needs across the continuum of late life would be maintained, where the demarcation of boundaries between healthy aging and healthy dying become increasingly blurred. Our findings highlight the urgent need for health system change to improve end-of-life care as part of universal health coverage. The use of health services should be informed by the likelihood of benefits and intended outcomes rather than on prognosis. CONTEXT: In an era of unprecedented global aging, a key priority is to align health and social services for older populations in order to support the dual priorities of living well while adapting to a gradual decline in function. We aimed to provide a comprehensive synthesis of evidence regarding service delivery models that optimize the quality of life (QoL) for older people at the end of life across health, social, and welfare services worldwide. METHODS: We conducted a rapid scoping review of systematic reviews. We searched MEDLINE, CINAHL, EMBASE, and CDSR databases from 2000 to 2017 for reviews reporting the effectiveness of service models aimed at optimizing QoL for older people, more than 50% of whom were older than 60 and in the last one or two years of life. We assessed the quality of these included reviews using AMSTAR and synthesized the findings narratively. RESULTS: Of the 2,238 reviews identified, we included 72, with 20 reporting meta-analysis. Although all the World Health Organization (WHO) regions were represented, most of the reviews reported data from the Americas (52 of 72), Europe (46 of 72), and/or the Western Pacific (28 of 72). We identified two overarching classifications of service models but with different target outcomes: Integrated Geriatric Care, emphasizing physical function, and Integrated Palliative Care, focusing mainly on symptoms and concerns. Areas of synergy across the overarching classifications included person-centered care, education, and a multiprofessional workforce. The reviews assessed 117 separate outcomes. A meta-analysis demonstrated effectiveness for both classifications on QoL, including symptoms such as pain, depression, and psychological well-being. Economic analysis and its implications were poorly considered. CONCLUSIONS: Despite their different target outcomes, those service models classified as Integrated Geriatric Care or Integrated Palliative Care were effective in improving QoL for older people nearing the end of life. Both approaches highlight the imperative for integrating services across the care continuum, with service involvement triggered by the patient's needs and likelihood of benefits. To inform the sustainability of health system change we encourage economic analyses that span health and social care and examine all sources of finance to understand contextual inequalities.

'It is what it is': mothers' experiences of providing bladder and bowel care to their daughters living with life-limiting conditions.

BACKGROUND: Informal carers (carers) support palliative patients to live at home. Most palliative patients require bladder and bowel care (B&BC) at some point, but there is limited evidence about carers providing B&BC and how best to support them. AIM: To explore carers' experiences of providing B&BC to life-limited young adults. METHODS: Interpretative phenomenological analysis of five interviews with purposively selected carers. RESULTS: One overarching theme, 'It is what it is', and three superordinate themes ('Whatever my daughter needs', 'Mum knows best', and 'Coping with caring') emerged. While B&BC could be challenging at times, it was not a major concern. Instead it engendered closeness and opportunities for carers to provide better care than they felt professionals could. CONCLUSIONS: This study informs how professionals should understand the support carers offer. Professionals should ensure that carer/patient dyads who wish to manage B&BC are supported to do so, and that their support needs are regularly assessed.