Dr Sarah Combes

BACKGROUND: Advance care planning (ACP) conversations support people to think about, discuss and document their beliefs, values and preferences regarding future care. This process means that should the person loose capacity in the future, care can be provided, consistent with their personal values and beliefs. The ACP process is particularly relevant for older people living with frailty (frail elders) as they are vulnerable to sudden deterioration. However, ACP is rarely undertaken by frail elders. The aim of this study was to develop an intervention to increase multidisciplinary health and social care professionals' (H&SCPs) engagement of cognitively able, domestic-dwelling frail elders with ACP.

METHODS: Intervention development was guided by the Medical Research Council framework for complex interventions and the Behaviour Change Wheel. Multiple methods were used to understand ACP barriers and enablers: a systematic integrative review, a survey (n = 73 H&SCPs), and semi-structured interviews (n = 10 frail elders, n = 8 family members). A conceptual model, developed from the integrative review, underpinned data collection for the survey and interviews. Synthesis of this data, including patient and public involvement, was then used to identify H&SCPs behaviours that needed to change for ACP to be implemented and decide content and implementation for the intervention.

RESULTS: Following the Behaviour Change Wheel system, and based on the findings of the review, survey and interviews, the prototype intervention, Conversations on Living and Dying (CLaD), was developed. The CLaD prototype consisted of one 3.5-hour educational skills session for H&SCPs supported by a toolkit. Content focussed on the relevance of ACP for frail elders, experience of ACP by frail elders, and strategies H&SCPs could adopt to encourage frail elders' engagement with ACP. Strategies include recognising the importance of relationships and living well now, preparing frail elders for ACP conversations and starting ACP early. Participants who took part in initial prototype refinement reported that the intervention helped them think differently about ACP and encouraged them to engage with frail elders.

CONCLUSIONS: The use of behavioural theory enabled the development of CLaD, an evidence-based, theory-driven, person-centred intervention to support ACP engagement with frail elders. While feasibility testing is required, initial prototype refinement demonstrated that H&SCPs found the intervention to be acceptable, engaging, and clinically valuable in their practice with frail elders and their families.

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.

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.

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.

Objectives:

Inflammatory bowel disease (IBD) imposes a significant burden on patients. The authors have noticed an underlying presence of distress, seemingly distinct from anxiety and depression, in qualitative data collected for previous studies. Disease-related distress has been explored in diabetes, but has not been addressed in IBD. The authors aimed to determine the presence of IBD distress to inform development of a scale for assessing the phenomenon.

Methods:

This three-phase study used (1) a conceptual framework based on diabetes distress to conduct secondary analysis of qualitative data from four previous IBD studies (n=49 transcripts). Patient advisors confirmed the themes identified as causing distress, which guided (2) a focus group with people with IBD (n=8) and (3) items generated from phase 1 and 2 were subsequently used for a modified Delphi survey of IBD health professionals.

Results:

Five IBD-distress themes were identified: emotional distress; healthcare-related distress; interpersonal/social distress; treatment-related distress; and symptom-related distress.

Discussion:

Disease-specific distress in IBD was identified and is distinct from stress, anxiety and depression. Some causes of IBD distress overlap with diabetes distress, but existing diabetes-distress scales do not explain all the distress experienced by people with IBD and development of a new IBD-distress scale is warranted.

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.

This chapter provides an overview of the symptoms of frailty, the tools used to recognize and assess older people living with frailty such as the frailty phenotype and frailty index, and some of their common palliative care needs. Further, it details some of the perceived challenges of frailty to current palliative care practice, namely, recognizing dying, multiple morbidities and symptom burden, and the focus or goals of care. Palliative care for older people with frailty requires a broader disability rather than a single disease focus. Coordination and interdependencies with other care providers become as important as the discrete patient/professional clinical encounter. The centrality of the older person with frailty and their “family” living and dying over time means the social environment becomes paramount local resources; support and the interplay between services and community are vital. While evidence on the best ways to provide palliative care to this population is still developing, the chapter offers some examples of current services and suggests key elements derived from the literature and practice. The authors suggest there is a moral and clinical imperative for palliative care services to engage with older people with frailty and their caregivers, both lay and professional. This imperative brings opportunities and challenges, including revaluing living and dying rather than an overemphasis on care in the last days of life and remodeling palliative care services to focus more on need than diagnosis and the reorientation of palliative care, so that it can be integrated with older people’s services.

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.

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.

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.

Background

Frailty affects around 10% of people aged over 65 years, increasing to 65% of those over 90 years. This number is increasing. Older people with frailty are projected to become the largest future users of care services as they near end of life. Living with frailty increases vulnerability to sudden deterioration, fluctuating capacity and mortality risk. This leads to complex needs, requiring integrated care, and an approach orientated towards living with, as well as dying from, advancing frailty. However, accessing care in a timely manner can be difficult.

Aims

To develop a sustainable, cross-sectoral partnership to:

identify priorities to improve integrated care delivery, and care transitions, for older people with advancing frailty

develop organisations in which to conduct research

submit study proposal(s) for funding.

Objectives

To establish Partnership infrastructure and identify key contacts across palliative and end-of-life care.

To understand the strengths, weaknesses, barriers and enablers of research readiness and clinical services for people with advancing frailty.

To support provider services to become research ready.

To establish Partnership-wide research questions and develop research proposals.

Activities

The Partnership brought together experts, by profession or experience (n = 244), across specialist palliative and geriatric care and local government, to improve the delivery of integrated care for older people with advancing frailty as they near end of life. Members included older people with frailty, unpaid carers, health, social and voluntary care professionals and academics, across the East Midlands, South East England and South West London.

A survey of key contacts (n = 76) mapped and scoped the Partnership’s strengths, weaknesses, barriers and enablers of services for people with advancing frailty, and service providers’ research readiness. Forty-six key contacts responded. Most worked in the East Midlands (59%), in health care (70%) and in the community (58%). Survey findings were used to develop a service framework and to create a short list of potential research questions. Questions were refined and prioritised through coproduction with frail older people (n = 21), unpaid carer representatives (n = 7), health, social and voluntary care professionals (n = 11) and care home representatives (n = 3). The question chosen for bid development focused on ensuring what matters most to older people with frailty informs service development. This bid is currently being written. Partnership members were also supported to develop research readiness and enhance meaningful patient and public involvement by the development and curation of multiple resources.

Reflections

This work was challenging. The Partnership enabled the collaboration of diverse stakeholders and fostered opportunities to improve end-of-life care for older people with advancing frailty. However, the fluidity of the workforce, lack of finance to buy-out key contacts’ time, limited service integration across sectors, lack of common language and concepts across sectors, need to build research understanding and readiness, and minimal evidence of engaging frail older people approaching end of life in determining service provision and research, made achieving the initial goals overly ambitious. Nevertheless, the Partnership developed a service framework for older people living and dying with advancing frailty, and is currently coproducing a clinically applied, translational research proposal.

Funding

This article presents independent research funded by the National Institute for Health and Care Research (NIHR) Public Health Research programme as award number NIHR135262.