A systematic review and critical appraisal of quality indicators to assess optimal palliative care for older people with dementia

© The Author(s) 2019Background: A challenge for commissioners and providers of end-of-life care in dementia is to translate recommendations for good or effective care into quality indicators that inform service development and evaluation. Aim: To identify and critically evaluate quality indicators for end-of-life care in dementia. Results: We found 8657 references, after de-duplication. In all, 19 publications describing 10 new and 3 updated sets of indicators were included in this review. Ultimately, 246 individual indicators were identified as being relevant to dementia end-of-life care and mapped against EAPC guidelines. Conclusions: We systematically derived and assessed a set of quality indicators using a robust framework that provides clear definitions of aspects of palliative care, which are dementia specific, and strengthens the theoretical underpinning of new complex interventions in end-of-life care in dementia.Peer reviewedFinal Published versio

General practitioners' use and experiences of palliative care services: a survey in south east England

<p>Abstract</p> <p>Background</p> <p>The role of the General Practitioner (GP) is central to community palliative care. Good liaison between the different professionals involved in a patient's care is extremely important in palliative care patients. In cases where GPs have previously been dissatisfied with palliative services, this may be seen as a barrier to referral when caring for other patients. The aim of this survey is to investigate the use and previous experiences of GPs of two palliative care services, with particular emphasis on barriers to referral and to explore issues surrounding the GP's role in caring for palliative patients.</p> <p>Methods</p> <p>Design: Descriptive postal survey of use and experience of palliative care services with particular emphasis on barriers to referral. Setting: One Primary Care Trust (PCT), south London, England, population 298,500. Subjects: 180 GPs in the PCT, which is served by two hospice services (A&B).</p> <p>Results</p> <p>An overall questionnaire response rate of 77% (138) was obtained, with 69% (124) used in analysis. Over 90% of GPs were satisfied with the palliative care services over the preceding two years. Two areas of possible improvement emerged; communication and prescribing practices. GPs identified some patients that they had not referred, most commonly when patients or carers were reluctant to accept help, or when other support was deemed sufficient. Over half of the GPs felt there were areas where improvement could be made; with clarification of the rules and responsibilities of the multi disciplinary team being the most common. The majority of GPs were working, and want to work with, the specialist services as part of an extended team. However, a greater number of GPs want to hand over care to the specialist services than are currently doing so.</p> <p>Conclusion</p> <p>A large number of GPs were happy with the service provision of the palliative care services in this area. They suggested that 3 out of 4 terminally ill patients needed specialist input. Views of services were largely positive, and reasons for non referral were unrelated to previous experience of the specialist services.</p

Patterns and predictors of place of cancer death for the oldest old

BACKGROUND: Cancer patients increasingly are among older age groups, but to date little work has examined the trends in cancer among older people, particularly in relation to end of life care and death. This study describes the older population who die of cancer and the factors which may affect their place of death. METHODS: A Cross-sectional analysis of national data was performed. The study included all people aged 75 and over dying of cancer in England and Wales between 1995 and 1999. The population was divided into exclusive 5 year age cohorts, up to 100 years and over. Descriptive analysis explored demographic characteristics, cancer type and place of death. RESULTS: Between 1995 and 1999, 315,462 people aged 75 and over were registered as dying from cancer. The number who died increased each year slightly over the 5 year period (1.2%). In the 75–79 age group, 55 % were men, in those aged 100 and over this fell to 16%. On reaching their hundreds, the most common cause of death for men was malignancies of the genital organs; and for women it was breast cancer. The most frequent place of death for women in their hundreds was the care home; for men it was hospitals. Those dying from lymphatic and haematopoietic malignancies were most likely to die in hospitals, those with head and neck malignancies in hospices and breast cancer patients in a care home. CONCLUSION: The finding of rising proportions of cancer deaths in institutions with increasing age suggests a need to ensure that appropriate high quality care is available to this growing section of the population

How integrated are neurology and palliative care services? Results of a multicentre mapping exercise

Background: Patients affected by progressive long-term neurological conditions might benefit from specialist palliative care involvement. However, little is known on how neurology and specialist palliative care services interact. This study aimed to map the current level of connections and integration between these services. Methods: The mapping exercise was conducted in eight centres with neurology and palliative care services in the United Kingdom. The data were provided by the respective neurology and specialist palliative care teams. Questions focused on: i) catchment and population served; ii) service provision and staffing; iii) integration and relationships. Results: Centres varied in size of catchment areas (39-5,840 square miles) and population served (142,000-3,500,000). Neurology and specialist palliative care were often not co-terminus. Service provisions for neurology and specialist palliative care were also varied. For example, neurology services varied in the number and type of provided clinics and palliative care services in the settings they work in. Integration was most developed in Motor Neuron Disease (MND), e.g., joint meetings were often held, followed by Parkinsonism (made up of Parkinson’s Disease (PD), Multiple-System Atrophy (MSA) and Progressive Supranuclear Palsy (PSP), with integration being more developed for MSA and PSP) and least in Multiple Sclerosis (MS), e.g., most sites had no formal links. The number of neurology patients per annum receiving specialist palliative care reflected these differences in integration (range: 9–88 MND, 3–25 Parkinsonism, and 0–5 MS). Conclusions: This mapping exercise showed heterogeneity in service provision and integration between neurology and specialist palliative care services, which varied not only between sites but also between diseases. This highlights the need and opportunities for improved models of integration, which should be rigorously tested for effectiveness

The stability of care preferences following acute illness: a mixed methods prospective cohort study of frail older people

Abstract: Background: Patient preferences are integral to person-centred care, but preference stability is poorly understood in older people, who may experience fluctuant illness trajectories with episodes of acute illness. We aimed to describe, and explore influences on the stability of care preferences in frail older people following recent acute illness. Methods: Mixed-methods prospective cohort study with dominant qualitative component, parallel data collection and six-month follow up. Study population: age ≥ 65, Rockwood Clinical Frailty score ≥ 5, recent acute illness requiring acute assessment/hospitalisation. Participants rated the importance of six preferences (to extend life, improve quality of life, remain independent, be comfortable, support ‘those close to me’, and stay out of hospital) at baseline, 12 and 24 weeks using a 0–4 scale, and ranked the most important. A maximum-variation sub-sample additionally contributed serial in-depth qualitative interviews. We described preference stability using frequencies and proportions, and undertook thematic analysis to explore influences on preference stability. Results: 90/192 (45%) of potential participants consented. 82/90 (91%) answered the baseline questionnaire; median age 84, 63% female. Seventeen undertook qualitative interviews. Most participants consistently rated five of the six preferences as important (range 68–89%). ‘Extend life’ was rated important by fewer participants (32–43%). Importance ratings were stable in 61–86% of cases. The preference ranked most important was unstable in 82% of participants. Preference stability was supported by five influences: the presence of family support; both positive or negative care experiences; preferences being concordant with underlying values; where there was slowness of recovery from illness; and when preferences linked to long term goals. Preference change was related to changes in health awareness, or life events; if preferences were specific to a particular context, or multiple concurrent preferences existed, these were also more liable to change. Conclusions: Preferences were largely stable following acute illness. Stability was reinforced by care experiences and the presence of family support. Where preferences were unstable, this usually related to changing health awareness. Consideration of these influences during preference elicitation or advance care planning will support delivery of responsive care to meet preferences. Obtaining longer-term data across diverse ethnic groups is needed in future research

Feasibility and acceptability of a patient-reported outcome intervention in chronic heart failure

Patients with chronic heart failure (CHF) have symptoms and concerns which are inadequately addressed. Patient-reported outcome measures (PROMs) can potentially improve the identification and management of advanced symptoms and palliative concerns. However, these have not been used in CHF.OBJECTIVES: To examine the feasibility and acceptability of using a PROM-the Integrated Palliative care Outcome Scale (IPOS)-together with heart failure nurse education and training to improve the identification and management of symptoms and concerns among patients with CHF.METHODS: A parallel, mixed methods design with an embedded qualitative component was used to examine the feasibility of recruitment, retention, intervention adherence/compliance and follow-up assessment completion (symptom burden, quality of life, psychological well-being). Patient and nurse qualitative semistructured interviews explored intervention and study design feasibility and its acceptability.RESULTS: Conversion to consent was 46.9% (372 screened, 81 approached, 38 recruited). 66% of patient participants completed the IPOS; 6% of IPOS questionnaire items were missing (non-response). Over two-thirds (65.6%) of these missing items related to three patients. No item was consistently missing; appetite was the most frequent missing item (1.4%). 92% of participants who completed the IPOS completed all follow-up assessments (1-2 days, 1-2 weeks and 4-6 weeks post-IPOS completion) with no missing data. The a priori feasibility objectives were met. Patients and nurses reported the intervention and study design feasible and acceptable.CONCLUSIONS: A palliative-specific PROM-based intervention is feasible and acceptable to both patients with CHF and nurses in nurse-led disease management clinics for the purposes of both clinical care and research.</p

Integrated Short-term Palliative Rehabilitation to improve quality of life and equitable care access in incurable cancer (INSPIRE): a multinational European research project

Background: Disability related to incurable cancer affects over a million Europeans each year and people with cancer rank loss of function among the most common unmet supportive care needs. Objectives: To test the clinical and cost-effectiveness of an integrated short-term palliative rehabilitation intervention, to optimise function and quality of life in people affected by incurable cancer. Design: This is a multinational, parallel group, randomised, controlled, assessor blind, superiority trial. Methods: The INSPIRE consortium brings together leaders in palliative care, oncology and rehabilitation from partner organisations across Europe, with complementary expertise in health service research, trials of complex interventions, mixed-method evaluations, statistics and economics. Partnership with leading European civil society organisations ensures citizen engagement and dissemination at the highest level. We will conduct a multinational randomised controlled trial across five European countries, recruiting participants to assess the effectiveness of palliative rehabilitation for people with incurable cancer on the primary outcome – quality of life – and secondary outcomes including disability, symptom burden and goal attainment. To support trial conduct and enhance analysis of trial data, we will also conduct: comparative analysis of current integration of rehabilitation across oncology and palliative care services; mixed-method evaluations of equity and inclusivity, processes and implementation for the intervention, at patient, health service and health system levels. Finally, we will conduct an evidence synthesis, incorporating INSPIRE findings, and a Delphi consensus to develop an international framework for palliative rehabilitation practice and policy, incorporating indicators, core interventions, outcomes and integration methods. Scientific contribution: If positive, the trial could produce a scalable and equitable intervention to improve function and quality of life in people with incurable cancer and reduce the burden of care for their families. It could also upskill the practitioners involved and motivate future research questions. The intervention could be adapted and integrated into different health systems using existing staff and services, with little or no additional cost

Cultural Competence in End-of-Life Care: Terms, Definitions, and Conceptual Models from the British Literature

Background: Cultural competency is increasingly recommended in policy and practice to improve end-of-life (EoL) care for minority ethnic groups in multicultural societies. It is imperative to critically analyze this approach to understand its underlying concepts. Aim: Our aim was to appraise cultural competency approaches described in the British literature on EoL care and minority ethnic groups. Design: This is a critical review. Articles on cultural competency were identified from a systematic review of the literature on minority ethnic groups and EoL care in the United Kingdom. Terms, definitions, and conceptual models of cultural competency approaches were identified and situated according to purpose, components, and origin. Content analysis of definitions and models was carried out to identify key components. Results: One-hundred thirteen articles on minority ethnic groups and EoL care in the United Kingdom were identified. Over half (n=60) contained a term, definition, or model for cultural competency. In all, 17 terms, 17 definitions, and 8 models were identified. The most frequently used term was "culturally sensitive," though "cultural competence" was defined more often. Definitions contained one or more of the components: "cognitive," "implementation," or "outcome." Models were categorized for teaching or use in patient assessment. Approaches were predominantly of American origin. Conclusions: The variety of terms, definitions, and models underpinning cultural competency approaches demonstrates a lack of conceptual clarity, and potentially complicates implementation. Further research is needed to compare the use of cultural competency approaches in diverse cultures and settings, and to assess the impact of such approaches on patient outcomes