Jane Harrington

Advance care planning in advanced cancer: Can it be achieved? An exploratory randomized patient preference trial of a care planning discussion

OBJECTIVE Little is known about the effectiveness of advance care planning in the United Kingdom, although policy documents recommend that it should be available to all those with life-limiting illness. METHOD An exploratory patient preference randomized controlled trial of advance care planning discussions with an independent mediator (maximum three sessions) was conducted in London outpatient oncology clinics and a nearby hospice. Seventy-seven patients (mean age 62 years, 39 male) with various forms of recurrent progressive cancer participated, and 68 (88%) completed follow-up at 8 weeks. Patients completed visual analogue scales assessing perceived ability to discuss end-of-life planning with healthcare professionals or family and friends (primary outcome), happiness with the level of communication, and satisfaction with care, as well as a standardized measure of anxiety and depression. RESULTS Thirty-eight patients (51%) showed preference for the intervention. Discussions with professionals or family and friends about the future increased in the intervention arms, whether randomized or preference, but happiness with communication was unchanged or worse, and satisfaction with services decreased. Trial participation did not cause significant anxiety or depression and attrition was low. SIGNIFICANCE OF RESULTS A randomized trial of advance care planning is possible. This study provides new evidence on its acceptability and effectiveness for patients with advanced cancer.

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.

Dehydration induced by bowel preparation in older adults does not result in cognitive dysfunction

BACKGROUND: Postoperative cognitive dysfunction occurs in a proportion of patients after noncardiac surgery. Older patients are particularly vulnerable. We hypothesized that dehydration, a common perioperative problem in the elderly, may provoke cognitive dysfunction. We used a clinical scenario free of surgical/anesthetic intervention to determine whether dehydration caused by bowel preparation results in cognitive changes. METHODS: Thirty-eight patients of an age associated with a significant incidence of postoperative cognitive dysfunction were recruited in a prospective observational study. A further control group of 14 patients undergoing sigmoidoscopy, who did not receive any bowel preparation, were matched for age, education, and gender. RESULTS: Loss of total body weight (1.5 kg [95% CI: 0.9–2.2]; P < 0.001) occurred in patients undergoing bowel preparation (2.0 [95% CI: 1.3–2.6] percent total body weight), whereas sigmoidoscopy patients’ weight did not change (0.17 kg [95% CI: −0.2–0.6 kg]; P = 0.26). Total body water, derived from foot bioimpedance, indicated dehydration in the bowel preparation group only (mean impedance change 36 [Omega] [95% CI; 25–46], P < 0.001) with a calculated decrease of 2.6% in total body water (95% CI: 1.1–4.8; P < 0.001). Hematocrit increased after bowel preparation only (prebowel prep 0.41 [0.40–0.43] versus postbowel prep 0.43 [0.42–0.45]; P = 0.003). Despite this degree of dehydration, all cognitive tests were within 1 sd of the population mean of normal values. Repeated measures analysis of variance did not reveal significant changes for within group comparisons over time for motor speed (P = 0.51), executive function (P = 0.57), Trail Making Tests and recall (P = 0.88), other than a 3 s slowing in learning ability (Rey Auditory Verbal Learning Test; P = 0.04). Hydration status did not affect learning (P = 0.42), recall (P = 0.30) motor speed (P = 0.36), or executive function tests (P = 0.26). CONCLUSION: Dehydration alone does not result in cognitive dysfunction.

Context, mechanisms and outcomes in end of life care for people with advanced dementia.

BackgroundThe majority of people with dementia in the UK die in care homes. The quality of end of life care in these environments is often suboptimal. The aim of the present study was to explore the context, mechanisms and outcomes for providing good palliative care to people with advanced dementia residing in UK care homes from the perspective of health and social care providers.MethodThe design of the study was qualitative which involved purposive sampling of health care professionals to undertake interactive interviews within a realist framework. Interviews were completed between September 2012 and October 2013 and were thematically analysed and then conceptualised according to context, mechanisms and outcomes. The settings were private care homes and services provided by the National Health Service including memory clinics, mental health and commissioning services in London, United Kingdom. The participants included 14 health and social care professionals including health care assistants, care home managers, commissioners for older adults’ services and nursing staff.ResultsGood palliative care for people with advanced dementia is underpinned by the prioritisation of psychosocial and spiritual care, developing relationships with family carers, addressing physical needs including symptom management and continuous, integrated care provided by a multidisciplinary team. Contextual factors that detract from good end of life care included: an emphasis on financial efficiency over person-centred care; a complex health and social care system, societal and family attitudes towards staff; staff training and experience, governance and bureaucratisation; complexity of dementia; advance care planning and staff characteristics. Mechanisms that influence the quality of end of life care include: level of health care professionals’ confidence, family uncertainty about end of life care, resources for improving end of life care and supporting families, and uncertainty about whether dementia specific palliative care is required.ConclusionsContextual factors regarding the care home environment may be obdurate and tend to negatively impact on the quality of end of life dementia care. Local level mechanisms may be more amenable to improvement. However, systemic changes to the care home environment are necessary to promote consistent, equitable and sustainable high quality end of life dementia care across the UK care home sector.

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.

CoMPASs: IOn programme (Care Of Memory Problems in Advanced Stages of dementia: Improving Our Knowledge): protocol for a mixed methods study.

Introduction Approximately 700 000 people in the UK have dementia, rising to 1.2 million by 2050; one-third of people aged over 65 will die with dementia. Good end-of-life care is often neglected, and detailed UK-based research on symptom burden and needs is lacking. Our project examines these issues from multiple perspectives using a rigorous and innovative design, collecting data which will inform the development of pragmatic interventions to improve care. Methods and analysis To define in detail symptom burden, service provision and factors affecting care pathways we shall use mixed methods: prospective cohort studies of people with advanced dementia and their carers; workshops and interactive interviews with health professionals and carers, and a workshop with people with early stage dementia. Interim analyses of cohort data will inform new scenarios for workshops and interviews. Final analysis will include cohort demographics, the symptom burden and health service use over the follow-up period. We shall explore the level and nature of unmet needs, describing how comfort and quality of life change over time and differences between those living in care homes and those remaining in their own homes. Data from workshops and interviews will be analysed for thematic content assisted by textual grouping software. Findings will inform the development of a complex intervention in the next phase of the research programme. Ethics and dissemination Ethical approval was granted by National Health Service ethical committees for studies involving people with dementia and carers (REC refs. 12/EE/0003; 12/LO/0346), and by university ethics committee for work with healthcare professionals (REC ref. 3578/001). We shall present our findings at conferences, and in peer-reviewed journals, prepare detailed reports for organisations involved with end-of-life care and dementia, publicising results on the Marie Curie website. A summary of the research will be provided to participants if requested.

What are the barriers to care integration for those at the advanced stages of dementia living in care homes in the UK? Health care professional perspective.

People with advanced dementia are frequently bed-bound, doubly incontinent and able to speak only a few words. Many reside in care homes and may often have complex needs requiring efficient and timely response by knowledgeable and compassionate staff. The aim of this study is to improve our understanding of health care professionals’ attitudes and knowledge of the barriers to integrated care for people with advanced dementia. In-depth, interactive interviews conducted with 14 health care professionals including commissioners, care home managers, nurses and health care assistants in the UK. Barriers to care for people with advanced dementia are influenced by governmental and societal factors which contribute to challenging environments in care homes, poor morale amongst care staff and a fragmentation of health and social care at the end of life. Quality of care for people with dementia as they approach death may be improved by developing collaborative networks to foster improved relationships between health and social care services.

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.

An ethnographic study of strategies to support discussions with family members on end-of-life care for people with advanced dementia in nursing homes

BackgroundMost people with advanced dementia die in nursing homes where families may have to make decisions as death approaches. Discussions about end-of-life care between families and nursing home staff are uncommon, despite a range of potential benefits. In this study we aimed to examine practices relating to end-of-life discussions with family members of people with advanced dementia residing in nursing homes and to explore strategies for improving practice.MethodsAn ethnographic study in two nursing homes where the Compassion Intervention was delivered. The Compassion Intervention provides a model of end-of-life care engaging an Interdisciplinary Care Leader to promote integrated care, educate staff, support holistic assessments and discuss end of life with families. We used a framework approach, undertaking a thematic analysis of fieldwork notes and observations recorded in a reflective diary kept by the Interdisciplinary Care Leader, and data from in-depth interviews with 23 informants: family members, GPs, nursing home staff, and external healthcare professionals.ResultsFour major themes described strategies for improving practice: (i) educating families and staff about dementia progression and end–of-life care; (ii) appreciating the greater value of in-depth end-of-life discussions compared with simple documentation of care preferences; (iii) providing time and space for sensitive discussions; and (iv) having an independent healthcare professional or team with responsibility for end-of-life discussions.ConclusionsThe Interdisciplinary Care Leader role offers a promising method for supporting and improving end-of-life care discussions between families of people with advanced dementia and nursing home staff. These strategies warrant further evaluation in nursing home settings.

Effect on the brain of two techniques of myocardial protection.

This study compared the occurrence of intraoperative microemboli and postoperative changes in neuropsychological performance in 195 patients undergoing coronary artery bypass grafting who were randomized to intermittent crossclamp fibrillation or cardioplegic arrest. Cerebral microemboli were recorded from cannulation to 15 min after decannulation, using transcranial Doppler in 166 patients. Microemboli in relation to 9 surgical events were also noted. Neuropsychological change scores were obtained by comparing cognitive performance preoperatively with that at 6–8 weeks after surgery. The median number of microemboli detected was 105 (range, 9–1,757) in the fibrillation group, and 110 (range, 1–1,306) in the cardioplegia group, with no significant difference between groups. There was also no significant difference between groups in the generation of microemboli during any of the surgical events. Neuropsychological tests were completed postoperatively by 177 participants, with no significant differences in performance found between the 2 groups. Given the equivalence of the effect of intermittent crossclamp fibrillation and cardioplegic arrest on microemboli and neuropsychology, consideration of which form of myocardial protection to employ should perhaps focus more on which method affords most protection to the heart.