ORCID Profile
0000-0002-4505-7743
Current Organisations
University of Cambridge School of Clinical Medicine
,
University of Cambridge
Does something not look right? The information on this page has been harvested from data sources that may not be up to date. We continue to work with information providers to improve coverage and quality. To report an issue, use the Feedback Form.
Publisher: Royal College of General Practitioners
Date: 08-2013
Publisher: Royal College of General Practitioners
Date: 04-2010
Publisher: Hindawi Limited
Date: 29-05-2013
DOI: 10.1111/HSC.12055
Abstract: The aim of the study was to describe the expectations and experiences of end-of-life care of older people resident in care homes, and how care home staff and the healthcare practitioners who visited the care home interpreted their role. A mixed-method design was used. The everyday experience of 121 residents from six care homes in the East of England were tracked 63 residents, 30 care home staff with assorted roles and 19 National Health Service staff from different disciplines were interviewed. The review of care home notes demonstrated that residents had a wide range of healthcare problems. Length of time in the care homes, functional ability or episodes of ill-health were not necessarily meaningful indicators to staff that a resident was about to die. General Practitioner and district nursing services provided a frequent but episodic service to in idual residents. There were two recurring themes that affected how staff engaged with the process of advance care planning with residents 'talking about dying' and 'integrating living and dying'. All participants stated that they were committed to providing end-of-life care and supporting residents to die in the care home, if wanted. However, the process was complicated by an ongoing lack of clarity about roles and responsibilities in providing end-of-life care, doubts from care home and primary healthcare staff about their capacity to work together when residents' trajectories to death were unclear. The findings suggest that to support this population, there is a need for a pattern of working between health and care staff that can encourage review and discussion between multiple participants over sustained periods of time.
Publisher: SAGE Publications
Date: 22-06-2011
Abstract: Older people living in a care home have a limited life expectancy, and care homes are an important setting for end-of-life care provision. This research aimed to explore the views, experiences and expectations of end-of-life care among care home residents to understand if key events or living in a residential environment influenced their views. The research used a prospective design. The paper draws on the qualitative interviews of 63 care home residents who were interviewed up to three times over a year. This was a sub-s le of the larger data set of 121 care home residents. The residents were recruited from six care homes (providing personal care with no on-site nursing) in the UK. Results: Four main themes were identified Living in the Past, Living in the Present, Thinking about the Future and Actively Engaged with planning the future. Many residents said they had not spoken to the care staff about end-of-life care many assumed their family or General Practitioner would take responsibility. Core to the older person’s ability to discuss end-of-life care is their acceptance of being in a care home, the involvement of family members in making decisions and the extent to which they believed they could influence decision making within their everyday lives. Advance care plans should document ongoing dialogue. These findings can inform how primary health and palliative care services introduce, discuss and tailor existing frameworks and programmes of end-of-life care.
Publisher: SAGE Publications
Date: 06-12-2013
Abstract: Despite fast-growing ‘older old’ populations, ‘place of care’ trajectories for very old people approaching death with or without dementia are poorly described and understood. To explore end-of-life transitions of ‘older old’ people across the cognitive spectrum. Population-based prospective cohort (United Kingdom) followed to death. Mortality records linked to 283 Cambridge City over-75s Cohort participants’ cognitive assessments year before dying aged ≥85 years. Overall, 69% were community dwelling in the year before death of those with severe cognitive impairment 39% were community dwelling. Only 6% subsequently changed their usual address. However, for 55% their usual address on death registration was not their place of death. Dying away from the ‘usual address’ was associated with cognition, overall fewer moving with increasing cognitive impairment – cognition intact 66%, mildly/moderately impaired 55% and severely impaired 42%, trend p = 0.003. This finding reflects transitions being far more common from the community than from institutions: 73% from the community and 28% from institutions did not die where last interviewed ( p 0.001). However, severely cognitively impaired people living in the community were the most likely group of all to move: 80% (68%−93%). Hospitals were the most common place of death except for the most cognitively impaired, who mostly died in care homes. Most very old community-dwelling in iduals, especially the severely cognitively impaired, died away from home. Findings also suggest that long-term care may play a role in avoidance of end-of-life hospital admissions. These results provide important information for planning end-of-life services for older people across the cognitive spectrum, with implications for policies aimed at supporting home deaths. Cognitive impairment, Dementia, Aged, 80 and over, Aged, frail elderly, Patient Transfer, Residential characteristics, Homes for the aged, Nursing Homes, Delivery of Health Care, Terminal care Older old, Oldest old, Place of death, Place of care, End-of-life care.
Publisher: Public Library of Science (PLoS)
Date: 02-05-2014
Publisher: Wiley
Date: 2010
DOI: 10.1111/J.1532-5415.2009.02622.X
Abstract: To characterize people of advanced old age in their last year of life and compare those dying in their late 80s with those dying aged 90 and older to inform policy and planning. Retrospective analysis of prospectively collected population-based data from the Cambridge City over-75s Cohort (CC75C) Study, United Kingdom. Men and women aged 85 and older at death who died less than 1 year after taking part in any CC75C survey (N=321). Physical health, functional disability, self-rated health, cognitive status. Functional and cognitive impairments were markedly higher for those who died aged 90 and older- predominantly women-than for those who died aged 85 to 89. At least half (49.4-93.6%) of subjects aged 90 and older needed maximum assistance in virtually every daily activity those aged 85 to 89 needed this only for shopping and laundry. Disability in basic and instrumental activities rose from 59.1% before to 85.4% after the age of 90 and cognitive impairment (Mini-Mental State Examination score < or =21) from 41.7% to 69.4%. Despite this and proximity to death, 60.5% and 67.0%, respectively, rated their health positively. Only one in five reported needing more help. This study provides new data identifying high levels of physical and cognitive disability in very old people in the year before death. As the very old population rises, so will support needs for people dying in extreme old age. The mismatch between health perceptions and functional limitations suggests that these vulnerable older adults may not seek help from which they could benefit. These findings have major policy and planning implications for end-of-life care for the oldest old.
Publisher: BMJ
Date: 02-04-2020
DOI: 10.1136/BMJSPCARE-2019-002093
Abstract: Frail older people are known to have low rates of advance care planning (ACP). Many frail patients prefer less aggressive treatment, but these preferences are often not known or respected. Frail patients often have multiple hospital admissions, potentially providing opportunities for ACP. To systematically review the literature concerning ACP with frail older people in the acute hospital, with particular reference to: (1) Does ACP improve outcomes? (2) What are the views of patients, relatives and healthcare professionals regarding ACP? (3) Does ACP currently occur? (4) What are the facilitators and barriers to ACP? Systematic literature review and narrative synthesis. Electronic search of MEDLINE, CINAHL, ASSIA, PsycINFO and Embase databases from January 1990 to May 2019 inclusive. Studies in the acute setting of populations with a mean age 75 years, not focused on a disease-specific terminal condition were included. 16 133 articles were retrieved, 14 met inclusion criteria. No studies used an objective measure of frailty. One randomised controlled trial (RCT) found that ACP improves outcomes for older patients. Although 74%–84% of capacitous older inpatients are receptive to ACP, rates of ACP are 0%–5% the reasons for this discrepancy have been little studied. The nature of ACP in clinical practice is unknown thus the extent to which it reflects the RCT intervention cannot be assessed. The outcomes that are important to patients are poorly understood and family and physician experiences have not been explored. A better understanding of this area could help to improve end-of-life care for frail older people. CRD42017080246.
Publisher: National Institute for Health and Care Research
Date: 10-2019
DOI: 10.3310/HTA23550
Abstract: Patients admitted to hospital with a terminal illness and uncertain recovery often receive inconsistent care and do not have the opportunity to die in their preferred place of death. Previous end-of-life care packages, such as the Liverpool Care Pathway for the Dying Patient, have sometimes been badly implemented. The AMBER (Assessment Management Best practice Engagement Recovery uncertain) care bundle was developed to remedy this. It has not been evaluated in a randomised trial, but a definitive trial would face many hurdles. To optimise the design of and determine the feasibility of a pragmatic, multicentre, cluster randomised controlled trial of the AMBER care bundle compared with best standard care. A feasibility cluster randomised controlled trial including semistructured interviews with patients and relatives, focus groups with health-care professionals, non-participant observations of multidisciplinary team meetings, a standard care survey, heat maps and case note reviews. Retrospective data were collected from the family or close friends of deceased patients via a bereavement survey. Four general medical wards at district general hospitals in England. There were 65 participants (control, n = 36 intervention, n = 29). There were 24 interviews, four focus groups, 15 non-participant meeting observations, six case note reviews and three heat maps, and 15 of out 23 bereavement, standard care surveys were completed. The AMBER care bundle is implemented by a nurse facilitator. It includes the development and documentation of a medical plan, consideration of outcomes, resuscitation and escalation status and daily plan revisiting. The AMBER care bundle encourages staff, patients and families to talk openly about their preferences and priorities should the worst happen. Two ‘candidate’ primary outcomes were selected to be evaluated for a future definitive trial: Integrated Palliative care Outcome Scale patient/family anxiety and communication subscale and ‘ howRwe ’. The secondary outcome measures were Integrated Palliative care Outcome Scale symptoms, Australian-modified Karnofsky Performance Status scale, EuroQol-5 Dimensions, five-level version, Client Service Receipt Inventory, recruitment rate, intervention fidelity and intervention acceptability. Data were collected for 65 patients. This trial was not powered to measure clinical effectiveness, but variance and changes observed in the Integrated Palliative care Outcome Scale subscale indicated that this measure would probably detect differences within a definitive trial. It was feasible to collect data on health, social and informal care service use and on quality of life at two time points. The AMBER care bundle was broadly acceptable to all stakeholders and was delivered as planned. The emphasis on ‘clinical uncertainty’ prompted health-care professional awareness of often-overlooked patients. Reviewing patients’ AMBER care bundle status was integrated into routine practice. Refinements included simplifying the inclusion criteria and improving health-care professional communication training. Improvements to trial procedures included extending the time devoted to recruitment and simplifying consent procedures. There was also a recommendation to reduce data collected from patients and relatives to minimise burden. The recruitment rate was lower than anticipated. The inclusion criteria for the trial were difficult to interpret. Information sheets and consent procedures were too detailed and lengthy for the target population. Health-care professionals’ enthusiasm and specialty were not considered while picking trial wards. Participant recruitment took place later during hospital admission and the majority of participants were lost to follow-up because they had been discharged. Those who participated may have different characteristics from those who did not. This feasibility trial has demonstrated that an evaluation of the AMBER care bundle among an acutely unwell patient population, although technically possible, is not practical or feasible. The intervention requires optimisation. Current Controlled Trials ISRCTN36040085. National Institute for Health Research (NIHR) Portfolio registration number 32682. This project was funded by the NIHR Health Technology Assessment programme and will be published in full in Health Technology Assessment Vol. 23, No. 55. See the NIHR Journals Library website for further project information.
Publisher: Springer Science and Business Media LLC
Date: 23-11-2011
Location: United Kingdom of Great Britain and Northern Ireland
Location: United Kingdom of Great Britain and Northern Ireland
No related grants have been discovered for Stephen Barclay.