End-of-life care and dementia

Robinson, Louise; Hughes, Julian C.; Daley, Sarah; Keady, John; Ballard, Clive; Volicer, Ladislav

doi:10.1017/s0959259806001833

Cited by 48 publications

(48 citation statements)

References 143 publications

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“…93 Several reviews point unequivocally to the importance of adopting palliative approaches in the case of non-malignant diseases such as dementia, particularly in acute settings. [94][95][96] There is also continuing evidence of inequalities in referral to and use of specialist palliative care services for older people. 20 Older people are proportionally more likely to die from conditions other than cancer, and hence are disadvantaged in access to specialist palliative care services by diagnosis.…”

Section: Introductionmentioning

confidence: 99%

Transitions to palliative care for older people in acute hospitals: a mixed-methods study

Gott

Ingleton

Gardiner

et al. 2013

Health Services and Delivery Research

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BackgroundImproving the provision of palliative and end-of-life care is a priority for the NHS. Ensuring an appropriately managed ‘transition’ to a palliative approach for care when patients are likely to be entering the last year of life is central to current policy. Acute hospitals represent a significant site of palliative care delivery and specific guidance has been published regarding the management of palliative care transitions within this setting.Aims(1) to explore how transitions to a palliative care approach are managed and experienced in acute hospitals and to identify best practice from the perspective of clinicians and service users; (2) to examine the extent of potentially avoidable hospital admissions amongst hospital inpatients with palliative care needs.DesignA mixed-methods design was adopted in two hospitals in England, serving diverse patient populations. Methods included (1) two systematic reviews; (2) focus groups and interviews with 58 health-care professionals to explore barriers to, and facilitators of, palliative care transitions in hospital; (3) a hospital inpatient survey examining palliative care needs and aspects of management including a self-/proxy-completed questionnaire, a survey of medical and nursing staff and a case note review; (4) in-depth interviews with 15 patients with palliative care needs; (5) a retrospective case note review of all inpatients present in the hospital at the time of the survey who had died within the subsequent 12 months; and (6) focus groups with 83 key decision-makers to explore the implications of the findings for service delivery and policy.ResultsOf the 514 patients in the inpatient survey sample, just over one-third (n = 185, 36.0%) met one or more of the Gold Standards Framework (GSF) prognostic indicator criteria for palliative care needs. The most common GSF prognostic indicator was frailty, with almost one-third of patients (27%) meeting this criteria. Agreement between medical and nursing staff and the GSF with respect to identifying patients with palliative care needs was poor. In focus groups, health professionals reported difficulties in recognising that a patient had entered the last 12 months of life. In-depth interviews with patients found that many of those interviewed were unaware of their prognosis and showed little insight into what they could expect from the trajectory of their disease. The retrospective case note review found that 35 (7.2%) admissions were potentially avoidable. The potential annual cost saving across both hospitals of preventing these admissions was approximately £5.3M. However, a 2- or 3-day reduction in length of stay for these admissions would result in an annual cost saving of £21.6M or £32.4M respectively.ConclusionsPatients with palliative care needs represent a significant proportion of the hospital inpatient population. There is a significant gap between NHS policy regarding palliative and end-of-life care management in acute hospitals in England and current practice.FundingThe National Institute for Health Research Health Services and Delivery Research programme.

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Section: Introductionmentioning

confidence: 99%

Transitions to palliative care for older people in acute hospitals: a mixed-methods study

Gott

Ingleton

Gardiner

et al. 2013

Health Services and Delivery Research

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“…In the USA, over half of people with dementia die in a nursing home . Reviews of evidence to date have drawn heavily on evidence from settings where there is access to medical and specialist palliative care services for this population (Coventry et al, 2005;Hughes et al, 2005;Robinson et al, 2005;Sampson et al, 2005;Zwakhalen et al, 2006;Birch and Draper, 2008). Generalist palliative care frameworks may increase awareness of the issues for people with dementia.…”

Section: Introductionmentioning

confidence: 99%

End of life care for community dwelling older people with dementia: an integrated review

Goodman

Evans

Wilcock

et al. 2009

Int J Geriat Psychiatry

106

102

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Objective: To review the evidence for end-of-life care for community dwelling older people with dementia (including those resident in care homes). Design: An integrated review synthesised the qualitative and quantitative evidence on end-of-life care for community dwelling older people with dementia. English language studies that focused on prognostic indicators for end-of-life care, assessment, support/relief, respite and educational interventions for community dwelling older people with dementia were included. A user representative group informed decisions on the breadth of literature used. Each study selected was screened independently by two reviewers using a standardised check list. Results: Sixty eight papers were included. Only 17% (12) exclusively concerned living and dying with dementia at home. Six studies included direct evidence from people with dementia. The studies grouped into four broad categories: Dementia care towards the end of life, palliative symptom management for people with dementia, predicting the approach of death for people with dementia and decision-making. The majority of studies were descriptive. The few studies that developed dementia specific tools to guide end of life care and outcome measures specific to improve comfort and communication, demonstrated what could be achieved, and how much more needs to be done. Conclusions: Research on end-of-life care for people with dementia has yet to develop interventions that address the particular challenges that dying with dementia poses. There is a need for investigation of interventions and outcome measures for providing end-of-life care in the settings where the majority of this population live and die.

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“…While Sampson (2010) also found no evidence that pain produces any particular or unique signs or behaviours (see Regnard et al, 2003), she suggests tools such as the Disability Distress Assessment Tool may be useful (Regnard et al, 2003). Robinson et al (2005) note that assessment tools have mainly been used in small scale trials, but some appear to be valid and easy to complete. There is consensus among the reviews that optimal management of pain in dementia is poorly understood, suggesting a need for more research.…”

Section: Pain and Comfortmentioning

confidence: 99%

“…A stepwise approach to pharmacological management such as the WHO analgesic ladder has been used to guide pharmacological treatment in some settings and adjuvant treatments, such as antidepressants, can also be tried (Robinson et al, 2005).…”

Section: Pain and Comfortmentioning

confidence: 99%

Palliative and end of life care for people with dementia: lessons for clinical commissioners

Raymond

Warner

Davies

et al. 2013

Prim Health Care Res Dev

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Our critical synthesis generated five main themes from this review of the reviews: (1) carers' (family caregivers') experiences; (2) person-centred care; (3) practice (including advance care planning, pain and comfort, nutrition, medical complications and minimizing the distress of behavioural symptoms); (4) system factors, including ethical dilemmas, decision making, information, and training; and (5) research priorities. There appears to be good evidence on the care and management of patients with dementia at the end of life which can be used to influence policy development and emerging specificity about research priorities in palliative care practice for people with dementia.

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End-of-life care and dementia

Cited by 48 publications

References 143 publications

Transitions to palliative care for older people in acute hospitals: a mixed-methods study

Transitions to palliative care for older people in acute hospitals: a mixed-methods study

End of life care for community dwelling older people with dementia: an integrated review

Palliative and end of life care for people with dementia: lessons for clinical commissioners

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