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

Managing clinical uncertainty in older people towards the end of life: a systematic review of person-centred tools.

BACKGROUND: Older people with multi-morbidities commonly experience an uncertain illness trajectory. Clinical uncertainty is challenging to manage, with risk of poor outcomes. Person-centred care is essential to align care and treatment with patient priorities and wishes. Use of evidence-based tools may support person-centred management of clinical uncertainty. We aimed to develop a logic model of person-centred evidence-based tools to manage clinical uncertainty in older people. METHODS: A systematic mixed-methods review with a results-based convergent synthesis design: a process-based iterative logic model was used, starting with a conceptual framework of clinical uncertainty in older people towards the end of life. This underpinned the methods. Medline, PsycINFO, CINAHL and ASSIA were searched from 2000 to December 2019, using a combination of terms: "uncertainty" AND "palliative care" AND "assessment" OR "care planning". Studies were included if they developed or evaluated a person-centred tool to manage clinical uncertainty in people aged ≥65 years approaching the end of life and quality appraised using QualSyst. Quantitative and qualitative data were narratively synthesised and thematically analysed respectively and integrated into the logic model. RESULTS: Of the 17,095 articles identified, 44 were included, involving 63 tools. There was strong evidence that tools used in clinical care could improve identification of patient priorities and needs (n = 14 studies); that tools support partnership working between patients and practitioners (n = 8) and that tools support integrated care within and across teams and with patients and families (n = 14), improving patient outcomes such as quality of death and dying and satisfaction with care. Communication of clinical uncertainty to patients and families had the least evidence and is challenging to do well. CONCLUSION: The identified logic model moves current knowledge from conceptualising clinical uncertainty to applying evidence-based tools to optimise person-centred management and improve patient outcomes. Key causal pathways are identification of individual priorities and needs, individual care and treatment and integrated care. Communication of clinical uncertainty to patients is challenging and requires training and skill and the use of tools to support practice

EFSUMB Recommendations and Guidelines for Gastrointestinal Ultrasound - Part 1: Examination Techniques and Normal Findings (Long version).

Abstract ▼ In October 2014 the European Federation of Societies for Ultrasound in Medicine and Biology formed a Gastrointestinal Ultrasound (GIUS) task force group to promote the use of GIUS in a clinical setting. One of the main objectives of the task force group was to develop clinical recommendations and guidelines for the use of GIUS under the auspices of EFSUMB. The first part, gives an overview of the examination techniques for GIUS recommended by experts in the field. It also presents the current evidence for the interpretation of normal sonoanatomical and physiological features as examined with different ultrasound modalities

EFSUMB Recommendations and Guidelines for Gastrointestinal Ultrasound - Part 1: Examination Techniques and Normal Findings (Short version)

Abstract ▼ In October 2014 the European Federation of Societies for Ultrasound in Medicine and Biology formed a Gastrointestinal Ultrasound (GIUS) task force group to promote the use of GIUS in a clinical setting. One of the main objectives of the task force group was to develop clinical recommendations and guidelines for the use of GIUS under the auspices of EFSUMB. The first part, gives an overview of the examination techniques for GIUS recommended by experts in the field. It also presents the current evidence for the interpretation of normal sonoanatomical and physiological features as examined with different ultrasound modalities

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

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

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