Meaning Making: Issues of Analysis in Memory-Work

Memory-work ConferenceAt the core of memory-work is the making of meaning from a collective reading of the memories of individuals’ lived experiences. Memory-work enables many voices to be heard in the understanding and theorising of the cross-woven threads of embodied experience. The methodology, however, confronts memory-workers with the complexity of moving between the subjectivity of their collective experiences, emotions and interpretations, and the more academic and distanced processes of theorising the meaning of those experiences. In that process, the particular voices of participants are often felt to be vulnerable or lost in the final analysis. This paper focuses on the challenges of making transparent and convincing processes of analysis, given the collectivity of the endeavour and the subjective nature of the methodology

Exploring the transition from curative care to palliative care: a systematic review of the literature.

BACKGROUND: UK policy guidance on treatment and care towards the end of life identifies a need to better recognise patients who are likely to be in the last 12 months of life. Health and social care professionals have a key role in initiating and managing a patient's transition from 'curative care' to palliative care. The aim of this paper is to provide a systematic review of evidence relating to the transition from curative care to palliative care within UK settings. METHOD: Four electronic databases were searched for studies published between 1975 and March 2010. Inclusion criteria were all UK studies relating to the transition from curative care to palliative care in adults over the age of 18. Selected studies were independently reviewed, data were extracted, quality was assessed and data were synthesised using a descriptive thematic approach. RESULTS: Of the 1464 articles initially identified, 12 papers met the criteria for inclusion. Four themes emerged from the literature: (1) patient and carer experiences of transitions; (2) recognition and identification of the transition phase; (3) optimising and improving transitions; and (4) defining and conceptualising transitions. CONCLUSIONS: The literature suggests that little is known about the potentially complex transition to palliative care. Evidence suggests that continuity of care and multidisciplinary collaboration are crucial in order to improve the experience of patients making the transition. An important role is outlined for generalist providers of palliative care. Incorporating palliative care earlier in the disease trajectory and implementing a phased transition appear key components of optimum care

Specialist palliative care nursing and the philosophy of palliative care: a critical discussion

Nursing is the largest regulated health professional workforce providing palliative care across a range of clinical settings. Historically, palliative care nursing has been informed by a strong philosophy of care which is soundly articulated in palliative care policy, research and practice. Indeed, palliative care is now considered to be an integral component of nursing practice regardless of the specialty or clinical setting. However, there has been a change in the way palliative care is provided. Upstreaming and mainstreaming of palliative care and the dominance of a biomedical model with increasing medicalisation and specialisation are key factors in the evolution of contemporary palliative care and are likely to impact on nursing practice. Using a critical reflection of the authors own experiences and supported by literature and theory from seminal texts and contemporary academic, policy and clinical literature, this discussion paper will explore the influence of philosophy on nursing knowledge and theory in the context of an evolving model of palliative care

What do we know about different models of providing palliative care? Findings from a systematic review of reviews.

BACKGROUND: A wide range of organisational models of palliative care exist. However, decision makers need more information about which models are likely to be most effective in different settings and for different patient groups. AIM: To identify the existing range of models of palliative care that have been evaluated, what is already known and what further information is essential if the most effective and cost-effective models are to be identified and replicated more widely. DESIGN: A review of systematic and narrative reviews according to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. Study quality was assessed using the AMSTAR (A MeaSurement Tool to Assess Reviews) tool. DATA SOURCES: MEDLINE, EMBASE, PsycINFO, CINAHL, Cochrane Library, Web of Science and ASSIA were searched for reviews about models of service provision from 2000 to 2014 and supplemented with Google searches of the grey literature. RESULTS: Much of the evidence relates to home-based palliative care, although some models are delivered across care settings. Reviews report several potential advantages and few disadvantages of models of palliative care delivery. However, under-reporting of the components of intervention and comparator models are major barriers to the evaluation and implementation of models of palliative care. CONCLUSION: Irrespective of setting or patient characteristics, models of palliative care appear to show benefits and some models of palliative care may reduce total healthcare costs. However, much more detailed and systematic reporting of components and agreement about outcome measures is essential in order to understand the key components and successfully replicate effective organisational models

Extent of palliative care need in the acute hospital setting: A survey of two acute hospitals in the UK

Background: In common with international health policy, The End of Life Care Strategy for England has highlighted the delivery of high quality palliative care in the acute hospital setting as an area of priority. Aim: The aim of this study was to explore the extent of palliative care need in the acute hospital setting, and to explore agreement between different sources in the identification of patients with palliative care need. Design: A cross-sectional survey of palliative care need was undertaken in two UK acute hospitals. Hospital case notes were examined for evidence of palliative care need according to Gold Standards Framework (GSF) prognostic indicator criteria. Medical and nursing staff were asked to identify patients with palliative care needs. Patients (or consultees) completed assessments of palliative care need. Participants: Of a total in-patient population of 1359, complete datasets were collected for 514 patients/consultees. Results: 36.0% of patients were identified as having palliative care needs according to GSF criteria. Medical staff identified 15.5% of patients as having palliative care needs, and nursing staff 17.4% of patients. Patient self-report data indicated that 83.2% of patients meeting GSF criteria had palliative care needs. Conclusion: The results reveal that according to the GSF prognostic guide, over a third of hospital in-patients meet the criteria for palliative care need. Consensus between medical staff, nursing staff and the GSF was poor regarding the identification of patients with palliative care needs. This has significant implications for patient care, and draws into question the utility of the GSF in the hospital setting

Barriers to providing palliative care for older people in acute hospitals

Background: the need for access to high-quality palliative care at the end of life is becoming of increasing public health concern. The majority of deaths in the UK occur in acute hospitals, and older people are particularly likely to die in this setting. However, little is known about the barriers to palliative care provision for older people within acute hospitals. Objective: to explore the perspectives of health professionals regarding barriers to optimal palliative care for older people in acute hospitals. Methods: fifty-eight health professionals participated in eight focus groups and four semi-structured interviews. Results: participants identified various barriers to palliative care provision for older people, including attitudinal differences to the care of older people, a focus on curative treatments within hospitals and a lack of resources. Participants also reported differing understandings of whose responsibility it was to provide palliative care for older people, and uncertainly over the roles of specialist and generalist palliative care providers in acute hospitals. Conclusions: numerous barriers exist to the provision of high-quality palliative care for older people within acute hospital settings. Additional research is now required to further explore age-related issues contributing to poor access to palliative care

Symptom burden, palliative care need and predictors of physical and psychological discomfort in two UK hospitals

Background: The requirement to meet the palliative needs of acute hospital populations has grown in recent years. With increasing numbers of frail older people needing hospital care as a result of both malignant and nonmalignant conditions, emphasis is being placed upon understanding the physical, psychological and social burdens experienced by patients. This study explores the extent of burden in two large UK hospitals, focusing upon those patients who meet palliative care criteria. Furthermore, the paper explores the use of palliative services and identifies the most significant clinical diagnostic and demographic factors which determine physical and psychological burden. Methods: Two hospital surveys were undertaken to identify burden using the Sheffield Profile for Assessment and Referral to Care (SPARC). The Gold Standards Framework (GSF) is used to identify those patients meeting palliative care criteria. Participants were identified as being in-patients during a two-week data collection phase for each site. Data was gathered using face-to-face interviews or self-completion by patients or a proxy. Descriptive analyses highlight prevalence and use of palliative care provision. Binary logistic regression assesses clinical diagnostic predictor variables of physical and psychological burden. Results: The sample consisted of 514 patients and elevated physical, psychological and social burden is identified amongst those meeting palliative care criteria (n = 185). Tiredness (34.6%), pain (31.1%), weakness (28.8%) and psychological discomfort (low mood 19.9%; anxiety 16.1%) are noted as being prevalent. A small number of these participants accessed Specialist Palliative Care (8.2%). Dementia was identified as a predictor of physical (OR 3.94; p < .05) and psychological burden (OR 2.88; p < .05), being female was a predictor of psychological burden (OR 2.00; p < .05). Conclusion: The paper highlights elevated levels of burden experienced by patients with palliative care requirements. Moreover, the paper also indicates that a large proportion of such patients are not in receipt of palliative approaches to their care. Furthermore, the paper identifies that those with non-malignant illnesses, especially dementia, may experience high levels of physical and psychological burden

What is the extent of potentially avoidable admissions amongst hospital inpatients with palliative care needs?

Background: There is clear evidence that the full range of services required to support people dying at home are far from being implemented, either in England or elsewhere. No studies to date have attempted to identify the proportion of hospital admissions that could have been avoided amongst patients with palliative care needs, given existing and current local services. This study aimed to examine the extent of potentially avoidable admissions amongst hospital patients with palliative care needs. Methods: A cross sectional survey of palliative care needs was undertaken in two acute hospitals in England. Appropriateness of admission was assessed by two Palliative Medicine Consultants using the following data collected from case notes: reasons for admission; diagnosis and co-morbidities; age and living arrangements; time and route of admission; medical and nursing plan on admission; specialist palliative care involvement; and evidence of cognitive impairment. Results: A total of 1359 inpatients were present in the two hospitals at the time of the census. Of the 654 consenting patients/consultees, complete case note data were collected for 580 patients; the analysis in this paper relates to these 580 patients. Amongst 208 patients meeting diagnostic and prognostic criteria for palliative care need in two acute settings in England, only 6.7% were identified as ‘potentially avoidable’ hospitalisations. These patients had a median age of 84. Half of the patients lived in residential or nursing homes and it was concluded that most could have received care in this setting in place of hospital. Conclusion: Our findings challenge assumptions that, within the existing configuration of palliative and end of life health and social care services, patients with palliative care needs experience a high level of potentially avoidable hospitalisations. Keywords: Palliative care needs, End of life, Avoidable admissions, Inappropriate admissions, Survey, Acute hospita

A reassuring presence: An evaluation of Bradford District Hospice at Home service

Within the United Kingdom, a developing role for primary care services in cancer and palliative care has resulted in an increase in palliative home care teams. The provision of professional care in the home setting seeks to provide necessary services and enhanced choice for patients whose preference is to die at home. A mismatch between patient preference for home death and the actual number of people who died at home was identified within Bradford, the locality of this study. In response to this mismatch, and reflecting the policy environment of wishing to enhance community service provision, the four Primary Care Trusts (PCTs) in the city sought to offer support to patients who wished to remain in their own homes through the final stages of a terminal illness. To offer this support they set up a dedicated hospice at home team. This would provide services and support for patients in achieving a dignified, symptom free and peaceful death, allowing families to maximise time spent together. The aim of the study was to evaluate the Bradford hospice at home service from the perspective of carers, nurses and General Practitioners. Postal questionnaires were sent to carers (n = 289), district nurses (n = 508) and GP's (n = 444) using Bradford's hospice at home service. Resulting quantitative data was analysed using the Statical Package for Social Sciences (SPSS) and qualitative data was analysed using grounded theory techniques. The data from carers, district nurses and GPs provide general support for the Bradford hospice at home service. Carers valued highly the opportunity to 'fulfil a promise' to the individual who wished to be cared for at home. District nurses and GPs cited the positive impact of access to specialist expertise. This was a 'reassuring presence' for primary healthcare teams and offered 'relief of carer anxiety' by providing prompt, accessible and sensitive care. Carers and health professionals welcomed the increased possibility of patients being cared for at home. The study identified the need to focus on improving skill levels of staff and on ensuring continuity of care

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

Background: Improving 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.&lt;p&gt;&lt;/p&gt; 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.&lt;p&gt;&lt;/p&gt; Design: A 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.&lt;p&gt;&lt;/p&gt; Results: Of 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.&lt;p&gt;&lt;/p&gt; Conclusions: Patients 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