Palliative Care

Sepúlveda, Cecilia; Marlin, Amanda; Yoshida, Tokuo; Ullrich, Andreas

doi:10.1016/s0885-3924(02)00440-2

Cited by 1,032 publications

(234 citation statements)

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“…420 This WHO stance on palliative care adopts a public health perspective with emphasis on early identification to prevent symptoms and ensure optimal disease management. 420 There is a distinction between generalist and specialist palliative care services: 424,425 l Generalist palliative care services are provided by health and social care practitioners to individuals in whatever care setting they reside. l Specialist palliative care services support these generalist services and provide care for people with unresolved symptoms, or complex psychosocial, end-of-life or bereavement issues.…”

Section: Definitions Of End-of-life Carementioning

confidence: 99%

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Changing practice in dementia care in the community: developing and testing evidence-based interventions, from timely diagnosis to end of life (EVIDEM)

Iliffe

Wilcock

Drennan

et al. 2015

Programme Grants for Applied Research

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BackgroundThe needs of people with dementia and their carers are inadequately addressed at all key points in the illness trajectory, from diagnosis through to end-of-life care. The EVIDEM (Evidence-based Interventions in Dementia) research and development programme (2007–12) was designed to help change this situation within real-life settings.ObjectivesThe EVIDEM projects were (1) evaluation of an educational package designed to enhance general practitioners’ (GPs’) diagnostic and management skills; (2) evaluation of exercise as therapy for behavioural and psychological symptoms of dementia (BPSD); (3) development of a toolkit for managing incontinence in people with dementia living at home; (4) development of a toolkit for palliative care for people with dementia; and (5) development of practice guidance on the use of the Mental Capacity Act (MCA) 2005.DesignMixed quantitative and qualitative methods from case studies to large database analyses, including longitudinal surveys, randomised controlled trials and research register development, with patient and public involvement built into all projects.SettingGeneral practices, community services, third-sector organisations and care homes in the area of the North Thames Dementia and Neurodegenerative Diseases Research Network local research network.ParticipantsPeople with dementia, their family and professional carers, GPs and community mental health team members, staff in local authority social services and third-sector bodies, and care home staff.Main outcome measuresDementia management reviews and case identification in general practice; changes in behavioural and psychological symptoms measured with the Neuropsychiatric Inventory (NPI); extent and impact of incontinence in community-dwelling people with dementia; mapping of pathways to death of people with dementia in care homes, and testing of a model of collaborative working between primary care and care homes; and understandings of the MCA 2005 among practitioners working with people with dementia.ResultsAn educational intervention in general practice did not alter management or case identification. Exercise as a therapy for BPSD did not reduce NPI scores significantly, but had a significant positive effect on carer burden. Incontinence is twice as common in community-dwelling people with dementia than their peers, and is a hidden taboo within a stigma. Distinct trajectories of dying were identified (anticipated, unexpected and uncertain), and collaboration between NHS primary care and care homes was improved, with cost savings. The MCA 2005 legislation provided a useful working framework for practitioners working with people with dementia.ConclusionsA tailored educational intervention for general practice does not change practice, even when incentives, policy pressure and consumer demand create a favourable environment for change; exercise has potential as a therapy for BPSD and deserves further investigation; incontinence is a common but unrecognised problem for people with dementia in the community; changes in relationships between care homes and general practice can be achieved, with benefits for people with dementia at the end of life and for the UK NHS; application of the MCA 2005 will continue to improve but educational reinforcements will help this. Increased research capacity in dementia in the community was achieved. This study suggests that further work is required to enhance clinical practice around dementia in general practice; investigate the apparent beneficial effect of physical activity on BPSD and carer well-being; develop case-finding methods for incontinence in people with dementia; optimise working relationships between NHS staff and care homes; and reinforce practitioner understanding of the MCA 2005.Trial registrationEVIDEM: ED-NCT00866099; EVIDEM: E-ISRCTN01423159.FundingThis project was funded by the Programme Grants for Applied Research programme of the National Institute for Health Research.

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Section: Definitions Of End-of-life Carementioning

confidence: 99%

“…The average care home providing personal care has between 26 and 36 places depending on ownership. 420 Twenty-three per cent of older people over 65 will die in a care home, the majority of whom will die with dementia. It is often assumed DOI: 10.3310/pgfar03030 PROGRAMME GRANTS FOR APPLIED RESEARCH 2015 VOL.…”

Section: Appendixmentioning

confidence: 99%

Changing practice in dementia care in the community: developing and testing evidence-based interventions, from timely diagnosis to end of life (EVIDEM)

Iliffe

Wilcock

Drennan

et al. 2015

Programme Grants for Applied Research

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“…At the same time the national provision of chaplaincy services is under review [15]. In order to meet the religious needs of patients from minority ethnic groups it has been recognised that factual knowledge is required [12,16] in addition to education and training [11,[17][18][19]. For healthcare professionals involved solely in the provision of palliative care, the aforementioned issues are of particular relevance.…”

Section: Introductionmentioning

confidence: 99%

“…This is achieved through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other physical, psychosocial and spiritual problems [19]. Hospice is a place of care, whose core activity is limited to the provision of palliative care [3].…”

Section: Introductionmentioning

confidence: 99%

An Exploration of Specialist Palliative Care Nurses’ Experiences of Providing Care to Hospice Inpatients from Minority Ethnic Groups—Implication for Religious and Spiritual Care

Henry

Timmins

2016

Religions

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Abstract:The aim of this research study was to gain an understanding of nurses' experiences of providing care to patients from minority ethnic groups within the specialist palliative care inpatient unit of an Irish hospice. Five nurses working in a hospice inpatient unit with experience in providing care to patients from minority ethnic groups were interviewed using a hermeneutic phenomenological approach. Analysis of the data resulted in the emergence of two distinct constructs, "encountering a landscape of diversity" and "negotiating this landscape", each one comprising three themes. Findings relating to religion and supporting patients' religious needs were dominant in four of the six emergent themes-death and dying, acceptance, feeling their way, and being resourceful. The findings presented in this paper highlight the personal and professional challenges facing nurses when providing care in the context of religious diversity. In addition, participants' descriptions of their endeavours to negotiate the challenges in the context of these differences are identified. By applying these findings in practice, healthcare professionals hold the potential to positively impact the quality-of-life of patients, their families, and their experiences of hospice care in Ireland.

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“…In most cases, the grief process is uncomplicated, however, for up to 15% of bereaved relatives grief may develop into a psycho-pathological condition [28]. The World Health Organization’s (WHO) definition of palliative care emphasizes that the informal caregivers’ health and needs should also be assessed and supported in palliative care [29]. Informal caregivers of patients with advanced cancer can experience deterioration of their own health and mental well-being [30].…”

Section: Introductionmentioning

confidence: 99%

The DOMUS study protocol: a randomized clinical trial of accelerated transition from oncological treatment to specialized palliative care at home

et al. 2014

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BackgroundThe focus of Specialized Palliative Care (SPC) is to improve care for patients with incurable diseases and their families, which includes the opportunity to make their own choice of place of care and ultimately place of death.The Danish Palliative Care Trial (DOMUS) aims to investigate whether an accelerated transition process from oncological treatment to continuing SPC at home for patients with incurable cancer results in more patients reaching their preferred place of care and death. The SPC in this trial is enriched with a manualized psychological intervention.Methods/DesignDOMUS is a controlled randomized clinical trial with a balanced parallel-group randomization (1:1). The planned sample size is 340 in- and outpatients treated at the Department of Oncology at Copenhagen University Hospital. Patients are randomly assigned either to: a) standard care plus SPC enriched with a standardized psychological intervention for patients and caregivers at home or b) standard care alone. Inclusion criteria are incurable cancer with no or limited antineoplastic treatment options.DiscussionPrograms that facilitate transition from hospital treatment to SPC at home for patients with incurable cancer can be a powerful tool to improve patients’ quality of life and support family/caregivers during the disease trajectory. The present study offers a model for achieving optimal delivery of palliative care in the patient’s preferred place of care and attempt to clarify challenges.Trial registrationClinicaltrials.gov Identifier: NCT01885637

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Palliative Care

Cited by 1,032 publications

References 1 publication

Changing practice in dementia care in the community: developing and testing evidence-based interventions, from timely diagnosis to end of life (EVIDEM)

Changing practice in dementia care in the community: developing and testing evidence-based interventions, from timely diagnosis to end of life (EVIDEM)

An Exploration of Specialist Palliative Care Nurses’ Experiences of Providing Care to Hospice Inpatients from Minority Ethnic Groups—Implication for Religious and Spiritual Care

The DOMUS study protocol: a randomized clinical trial of accelerated transition from oncological treatment to specialized palliative care at home

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