Barriers to the provision of high-quality palliative care for people with dementia in England: a qualitative study of professionals' experiences

Davies, Nathan; Maio, Laura; Vedavanam, Krish; Manthorpe, Jill; Vernooij‐Dassen, Myrra; Iliffe, Steve

doi:10.1111/hsc.12094

Cited by 57 publications

(75 citation statements)

References 32 publications

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“…Data were mostly derived from care homes, hospitals, hospice care facilities, Specialists PC service, general practices and residential care homes (See supplementary file online). Out of all the studies, 29 derived data from healthcare professionals/providers [30-38, 40-53, 55-57, 59, 60, 62], 11 from managers/directors of care facilities [34-36, 43, 44, 46, 47, 52, 57, 60, 61], nine studies from carers/caregivers [29,38,42,45,54,[56][57][58][59], one study from the patient's perspective [54] and seven focused on the commissioner's and policy expert's perspectives [35,36,39,43,44,46,56]. See also barriers to provision of PC from different stakeholders' perspectives in the online supplementary file for further details.…”

Section: Country Setting and Participantsmentioning

confidence: 99%

Factors influencing palliative care in advanced dementia: a systematic review

Mataqi

Aslanpour

2019

BMJ Support Palliat Care

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Background: Dementia is a progressive neurodegenerative life-limiting disease. The international literature indicates that patients with advanced dementia may benefit from palliative care provided during the end of life phase. However, evidence indicates that currently many fail to access such provision despite the increased recognition of their palliative needs. Aim: To investigate the factors influencing provision of palliative care services for people with advanced dementia. Method: A systematic review of mixed method studies written in English was undertaken. 11 electronic databases including Embase, Medline, PubMed, CINHAL and Scopus from 2008 to 2018 were searched.Narrative synthesis and content analysis were used to analyse and synthesise the data. Key findings:In total, 34 studies were included. 25 studies providing qualitative data, 6 providing quantitative data and 3 mixed methods studies. The findings identified organisational, healthcare professionals and patients related barriers and facilitators in provision of palliative care for people with advanced dementia from perspective of stakeholders across different care settings. The most commonly reported barriers are lack of skills and training opportunities of the staff specific to palliative care in dementia, lack of awareness that dementia is a terminal illness and a palliative condition, pain and symptoms assessment/management difficulties, discontinuity of care for patients with dementia and lack of co-ordination across care settings, difficulty communicating with the patient and the lack of advance care planning. Conclusions: Even though the provision of palliative care was empirically recognised as a care step in the management of dementia, there are barriers that hinder access of dementia patients to appropriate facilities. With dementia prevalence rising and no cure on the horizon, it is crucial that health and social care regulatory bodies integrate a palliative approach into their care using the identified facilitators to achieve optimal and effective palliative care in this population.

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Section: Country Setting and Participantsmentioning

confidence: 99%

Factors influencing palliative care in advanced dementia: a systematic review

Mataqi

Aslanpour

2019

BMJ Support Palliat Care

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“…The barriers to achieve good holistic care for patients nearing the end of their lives, well described in other settings,21 22 apply equally well in the acute cardiology setting 23. There is insufficient time to discuss such sensitive issues, the hospital environment is not ideal (particularly in multi-bedded rooms), cardiologists are not adequately trained and in cardiology there is a culture of doing more and never giving up.…”

Section: Discussionmentioning

confidence: 99%

Future Care Planning for patients approaching end-of-life with advanced heart disease: an interview study with patients, carers and healthcare professionals exploring the content, rationale and design of a randomised clinical trial

et al. 2014

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ObjectiveTo explore the optimal content and design of a clinical trial of an end-of-life intervention for advanced heart disease with patients, carers and healthcare professionals.DesignQualitative interview and focus group study.SettingCommunity and hospital-based focus groups and interviews.ParticipantsStable community-dwelling patients, informal carers (PC, n=15) and primary and secondary care based healthcare professionals (HCP, n=11).ResultsPC highlighted fragmentation of services and difficulty in accessing specialist care as key barriers to good care. They felt that time for discussion with HCP was inadequate within current National Health Service (NHS) healthcare systems. HCP highlighted uncertainty of prognosis, explaining mortality risk to patients and switching from curative to palliative approaches as key challenges. Patient selection, nature of the intervention and relevance of trial outcomes were identified by HCP as key challenges in the design of a clinical trial.ConclusionsPC and HCP expressed a number of concerns relevant to the nature and content of an end-of-life intervention for patients with advanced heart disease. The findings of this study are being used to support a phase II randomised clinical trial of Future Care Planning in advanced heart disease.

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“…PC for patients with advanced or terminal dementia should be improved in relation to the PC in cancer processes [15]. Such highquality evidence is not yet available for PC in dementia, although dementia care at the end of life is increasingly being studied [16,17].There is a need to improve palliative care provision for elderly with end-stage dementia and, in addition, more research is required on the needs of patients entering the terminal phase of dementia. By the nurses decisions about PC en advance dementia need to be made about how patients live, as well as how they die, thus balancing quality of living/comfort with disease management.…”

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confidence: 99%

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confidence: 99%

Reflections about palliative care for people with severe dementia

Sarabia‐Cobo¹

2016

Nurs Palliat Care

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Approaches to palliative care (PC) that were originally developed for people with cancer are now being adopted for people with dementia, as a response to many reports of poor-quality care for people with dementia at the end of life [1,2]. Currently there are no curative treatments for dementia, so as recommended by the World Health Organization, the PC should be applied from the earliest stages of chronic and fatal disease [3].Dementia is a syndrome characterized by a progressive decline in memory and cognitive functioning, and it is recognized as a major health problem in the elderly [4]. For these patients, early access to CP improves quality of life and may even prolong life [5].Whilst PC for cancer has long been established, PC for people with dementia is only just beginning to develop and be accepted across Europe and beyond [6]. Many of the needs in end-stage dementia are similar to those with cancer, including shortness of breath, skin breakdown, infections and constipation [7,8], but in dementia these symptoms can be experienced for a prolonged period of time. Until recent publication of the EAPC White Paper on PC in dementia [9], there was relatively little guidance on the provision of PC for this patient group [10][11][12].Several studies have explored the barriers to the delivery of quality PC for people with dementia [13,14]. One barrier is that dementia is often not recognized as a 'terminal' illness requiring palliation. In addition, the course of dementia is unpredictable, making it difficult to reach an accurate prognosis. Communicating with patients and fam ilies of people with dementia requires special skills because the cognitive problems associated with dementia compli cate decision making around a host of issues.The different courses of patient deterioration warrant dementiaspecific PC strategies. The EAPC White Paper recommends paying special attention to eight areas of care including communication, person-centred care and optimal treatment of symptoms and providing comfort [9]. PC for patients with advanced or terminal dementia should be improved in relation to the PC in cancer processes [15]. Such highquality evidence is not yet available for PC in dementia, although dementia care at the end of life is increasingly being studied [16,17].There is a need to improve palliative care provision for elderly with end-stage dementia and, in addition, more research is required on the needs of patients entering the terminal phase of dementia. By the nurses decisions about PC en advance dementia need to be made about how patients live, as well as how they die, thus balancing quality of living/comfort with disease management. 5.

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Barriers to the provision of high-quality palliative care for people with dementia in England: a qualitative study of professionals' experiences

Cited by 57 publications

References 32 publications

Factors influencing palliative care in advanced dementia: a systematic review

Factors influencing palliative care in advanced dementia: a systematic review

Future Care Planning for patients approaching end-of-life with advanced heart disease: an interview study with patients, carers and healthcare professionals exploring the content, rationale and design of a randomised clinical trial

Reflections about palliative care for people with severe dementia

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