Anna Gola

Development of a model for integrated care at the end of life in advanced dementia: A whole systems UK-wide approach

Background: The prevalence of dementia is rising worldwide and many people will die with the disease. Symptoms towards the end of life may be inadequately managed and informal and professional carers poorly supported. There are few evidence-based interventions to improve end-of-life care in advanced dementia. Aim: To develop an integrated, whole systems, evidence-based intervention that is pragmatic and feasible to improve end-of-life care for people with advanced dementia and support those close to them. Design: A realist-based approach in which qualitative and quantitative data assisted the development of statements. These were incorporated into the RAND/UCLA appropriateness method to achieve consensus on intervention components. Components were mapped to underlying theory of whole systems change and the intervention described in a detailed manual. Setting/participants: Data were collected from people with dementia, carers and health and social care professionals in England, from expert opinion and existing literature. Professional stakeholders in all four countries of the United Kingdom contributed to the RAND/UCLA appropriateness method process. Results: A total of 29 statements were agreed and mapped to individual, group, organisational and economic/political levels of healthcare systems. The resulting main intervention components are as follows: (1) influencing local service organisation through facilitation of integrated multi-disciplinary care, (2) providing training and support for formal and informal carers and (3) influencing local healthcare commissioning and priorities of service providers. Conclusion: Use of in-depth data, consensus methods and theoretical understanding of the intervention components produced an evidence-based intervention for further testing in end-of-life care in advanced dementia.

A protocol for an exploratory phase I mixed-methods study of enhanced integrated care for care home residents with advanced dementia: the Compassion Intervention.

Introduction In the UK approximately 700 000 people are living with, and a third of people aged over 65 will die with, dementia. People with dementia may receive poor quality care towards the end of life. We applied a realist approach and used mixed methods to develop a complex intervention to improve care for people with advanced dementia and their family carers. Consensus on intervention content was achieved using the RAND UCLA appropriateness method and mapped to sociological theories of process and impact. Core components are: (1) facilitation of integrated care, (2) education, training and support, (3) investment from commissioners and care providers. We present the protocol for an exploratory phase I study to implement components 1 and 2 in order to understand how the intervention operates in practice and to assess feasibility and acceptability. Methods and analysis An ‘Interdisciplinary Care Leader (ICL)’ will work within two care homes, alongside staff and associated professionals to facilitate service integration, encourage structured needs assessment, develop the use of personal and advance care plans and support staff training. We will use qualitative and quantitative methods to collect data for a range of outcome and process measures to detect effects on individual residents, family carers, care home staff, the intervention team, the interdisciplinary team and wider systems. Analysis will include descriptive statistics summarising process and care home level data, individual demographic and clinical characteristics and data on symptom burden, clinical events and quality of care. Qualitative data will be explored using thematic analysis. Findings will inform a future phase II trial. Ethics and dissemination Ethical approval was granted (REC reference 14/LO/0370). We shall publish findings at conferences, in peer-reviewed journals, on the Marie Curie Cancer Care website and prepare reports for dissemination by organisations involved with end-of-life care and dementia.

Living and dying with advanced dementia: A prospective cohort study of symptoms, service use and care at the end of life:

Background: Increasing number of people are dying with advanced dementia. Comfort and quality of life are key goals of care. Aims: To describe (1) physical and psychological symptoms, (2) health and social care service utilisation and (3) care at end of life in people with advanced dementia. Design: 9-month prospective cohort study. Setting and participants: Greater London, England, people with advanced dementia (Functional Assessment Staging Scale 6e and above) from 14 nursing homes or their own homes. Main outcome measures: At study entry and monthly: prescriptions, Charlson Comorbidity Index, pressure sore risk/severity (Waterlow Scale/Stirling Scale, respectively), acute medical events, pain (Pain Assessment in Advanced Dementia), neuropsychiatric symptoms (Neuropsychiatric Inventory), quality of life (Quality of Life in Late-Stage Dementia Scale), resource use (Resource Utilization in Dementia Questionnaire and Client Services Receipt Inventory), presence/type of advance care plans, interventions, mortality, place of death and comfort (Symptom Management at End of Life in Dementia Scale). Results: Of 159 potential participants, 85 were recruited (62% alive at end of follow-up). Pain (11% at rest, 61% on movement) and significant agitation (54%) were common and persistent. Aspiration, dyspnoea, septicaemia and pneumonia were more frequent in those who died. In total, 76% had ‘do not resuscitate’ statements, less than 40% advance care plans. Most received primary care visits, there was little input from geriatrics or mental health but contact with emergency paramedics was common. Conclusion: People with advanced dementia lived with distressing symptoms. Service provision was not tailored to their needs. Longitudinal multidisciplinary input could optimise symptom control and quality of life.

Acceptance and commitment therapy for adults with advanced cancer (CanACT): study protocol for a feasibility randomised controlled trial.

BackgroundOne-third of people with cancer experience psychological distress and may suppress distressing thoughts, emotions, and concerns, leading to further problems. Conventional psychological treatments reduce distress by problem solving, but in advanced cancer, when ill health is progressive and death may be approaching, physical and psychological difficulties are complex and have no simple solutions. Acceptance and Commitment Therapy encourages acknowledgement and acceptance of mental experiences, increasing people’s ability to work with problems that cannot be solved. Previous pilot work in advanced cancer confirms that distress can be associated with an avoidance of experiencing uncomfortable thoughts and emotions.Methods/DesignThis feasibility randomised controlled trial of Acceptance Commitment Therapy aims to establish parameters for a larger trial. Fifty-four participants with advanced cancer will be randomly allocated to up to eight sessions (each 1 hour) of Acceptance Commitment Therapy or a talking control. Participants will be recruited from those attending outpatient services and hospice day care at three specialist palliative care units in North and East London, United Kingdom. The primary outcome is a measure of functioning in four areas of life (physical, social/family, emotional, and general activity) using the Functional Assessment of Cancer Therapies - General questionnaire at 3 months after randomisation. Secondary outcomes are (i) acceptance using the Acceptance and Action Questionnaire; (ii) psychological distress using the Kessler Psychological Distress Scale; (iii) physical functioning using a timed walk and sit-to-stand test; and (iv) quality of life measures including the Euroqol-5 Dimensions and ICECAP Supportive Care measures. Qualitative data will be collected at 3 months to explore the participants’ experiences of the trial and therapy. Data will be collected on the costs of care.DiscussionData generated on the recruitment, retention, and experience of the interventions and the usefulness of the outcome measures will inform the adaptations required and whether changes in function are consistent with existing data when planning for a sufficiently powered randomised controlled trial.Trial registrationISRCTN13841211 (registered 22 July 2015).

Implementing the compassion intervention, a model for integrated care for people with advanced dementia towards the end of life in nursing homes: a naturalistic feasibility study

Background Many people with dementia die in nursing homes, but quality of care may be suboptimal. We developed the theory-driven ‘Compassion Intervention’ to enhance end-of-life care in advanced dementia. Objectives To (1) understand how the Intervention operated in nursing homes in different health economies; (2) collect preliminary outcome data and costs of an interdisciplinary care leader (ICL) to facilitate the Intervention; (3) check the Intervention caused no harm. Design A naturalistic feasibility study of Intervention implementation for 6 months. Settings Two nursing homes in northern London, UK. Participants Thirty residents with advanced dementia were assessed of whom nine were recruited for data collection; four of these residents’ family members were interviewed. Twenty-eight nursing home and external healthcare professionals participated in interviews at 7 (n=19), 11 (n=19) and 15 months (n=10). Intervention An ICL led two core Intervention components: (1) integrated, interdisciplinary assessment and care; (2) education and support for paid and family carers. Data collected Process and outcome data were collected. Symptoms were recorded monthly for recruited residents. Semistructured interviews were conducted at 7, 11 and 15 months with nursing home staff and external healthcare professionals and at 7 months with family carers. ICL hours were costed using Department of Health and Health Education England tariffs. Results Contextual differences were identified between sites: nursing home 2 had lower involvement with external healthcare services. Core components were implemented at both sites but multidisciplinary meetings were only established in nursing home 1. The Intervention prompted improvements in advance care planning, pain management and person-centred care; we observed no harm. Six-month ICL costs were £18 255. Conclusions Implementation was feasible to differing degrees across sites, dependent on context. Our data inform future testing to identify the Intervention’s effectiveness in improving end-of-life care in advanced dementia. Trial registration ClinicalTrials.gov:NCT02840318: Results

Which measures assessing quality of death and dying and satisfaction with care at the very end of life have been psychometrically validated? A systematic review

Introduction The very end of life can be associated with pain, anxiety and caregiver burden. Numerous measures seek to assess the quality of death and dying and satisfaction with care, but there is a lack of evidence and consensus on the best tools. Aims To identify all existing tools for assessing quality of death and dying and the quality of care and satisfaction with care at the very end of life, and systematically evaluate those which have been psychometrically validated. Method Four databases (Medline, Embase, Cinahl and Psycinfo) were searched in February 2016 using a combination of MeSH and free-text terms on end of life and satisfaction with care. Article titles, abstracts and full-text papers were reviewed to identify all papers reporting multi-item measures for assessing quality of death and dying and/or quality of care and satisfaction with care at the very end of life. Articles reporting on at least one psychometric investigation of the measures identified were then assessed for quality, using the COSMIN checklist (Mokkink, 2010). Results The initial search terms identified 4136 articles after excluding any duplicates. Seventy-seven papers, reporting 48 different measures, met the initial inclusion criteria. The most commonly used measures were the Quality Of Death and Dying (QODD; Patrick, 2001) and FAMCARE (Kristjanson, 1986). Both have been validated in a variety of cultural settings and participant groups. Conclusion Many measures assess quality of death and dying and satisfaction with care, but few have been thoroughly validated. QODD and FAMCARE are the best of those assessed. References Kristjanson LJ.Indicators of quality of palliative care from a family perspective. J Palliat Care 1986;1(2): 8–17 Mokkink LB, Terwee CB, Patrick DL, et al. The COSMIN checklist for assessing the methodological quality of studies on measurement properties of health status measurement instruments: an international Delphi study. Quality of Life Research 2010;19(4):539–549 Patrick DL, Engelberg RA, Curtis JR.Evaluating the quality of dying and death. J Pain Symptom Manage 2001;22(3):717–726

Why do we offer palliative care so late to patients with liver disease

Patients with advanced liver disease carry a high symptom burden and short life expectancy, but receive limited supportive and palliative care1. Providing planned day care for large volume paracentesis reduced costs, inpatient bed days and probability of dying in hospital after an unplanned admission1. These recent findings illustrate how care to people with advanced liver disease can be improved with the burden on acute service alleviated by the adoption of day-case models across the UK. This point is timely as palliative care provision for this group is poor, often occurring near to the patients’ death2. Why is this? It is recognised that prognosis or future care needs are often not discussed with liver patients until the very late stages of the disease. Clinicians report that they lack the expertise and confidence to initiate these discussions and a limited understanding about what palliative care can offer, and believe that patients have negative expectations of palliative care referral2. Conversations regarding palliation often introduces family members into the patient and clinician relationship, and family members may be resistant to the idea of palliative care2. Furthermore, many clinicians find it difficult to identify the point of ‘deterioration’ due to the fluctuating disease trajectory of advanced cirrhosis.