Jackie Robinson

Patient and family experiences of palliative care in hospital: What do we know? An integrative review

Background: In most developed countries, acute hospitals play a significant role in palliative care provision and are the setting in which most people die. They are often the setting where a life-limiting diagnosis is made and where patients present when symptoms develop or when they are not well managed. Understanding the experiences of hospital admissions for people with a life-limiting illness and their families is essential in understanding the role acute hospitals play in providing palliative care. Aim: The aim of this review is to synthesise current evidence regarding the experience of palliative care in an acute hospital setting from the perspectives of patient and family. Design: An integrative review was completed using standard processes followed by a process of data extraction and synthesis. Data sources: Using predefined search terms, literature was sourced from five electronic databases including MEDLINE (EBSCO), CINAHL, EMBASE, Cochrane and PsycINFO between January 1990 and November 2011. Reference lists from relevant articles were cross-checked and pertinent journals hand searched for articles. Results: In total, 32 articles were included in the review. Five recurring themes were identified from the synthesised data: symptom control and burden, communication with health professionals, decision-making related to patient care and management, inadequate hospital environment and interpersonal relationships with health professionals. Conclusion: This review has identified that, largely as a result of study design, our knowledge of patient and family experiences of palliative care in an acute hospital remains limited to discrete aspects of care. Further research is required to explore the total patient and family experience taking into account all aspects of care including the potential benefits of hospital admissions in the last year of life.

The nature of, and reasons for, ‘inappropriate’ hospitalisations among patients with palliative care needs: A qualitative exploration of the views of generalist palliative care providers

Background: Recent studies have concluded that there is significant potential to reduce the extent of ‘inappropriate’ hospitalisations among patients with palliative care needs. However, the nature of, and reasons for, inappropriate hospitalisations within a palliative care context is under-explored. Aim: To explore the opinions of ‘generalist’ palliative care providers regarding the nature of, and reasons for, inappropriate admissions among hospital inpatients with palliative care needs. Design: Qualitative study with data collected via individual interviews and focus groups. Setting/participants: Participants (n = 41) comprised ‘generalist’ palliative care providers working in acute hospital and community settings. Setting: One District Health Board in an urban area of New Zealand. Results: The majority of participants discussed ‘appropriateness’ in relation to their own understanding of a good death, which typically involved care being delivered in a ‘homely’ environment, from known people. Differing attitudes among cultural groups were also evident. The following reasons for inappropriate admissions were identified: family carers being unable to cope, the ‘rescue culture’ of modern medicine, the financing and availability of community services and practice within aged residential care. Conclusions: On the basis of our findings, we recommend a shift to the term ‘potentially avoidable’ admission rather than ‘inappropriate admission’. We also identify an urgent need for debate regarding the role of the acute hospital within a palliative care context. Interventions to reduce hospital admissions within this population must target societal understandings of death and dying within the context of medicalisation, as well as take into account cultural and ethnic diversity in attitudes, if they are to be successful.

Palliative care need and management in the acute hospital setting: a census of one New Zealand Hospital

BackgroundImproving palliative care management in acute hospital settings has been identified as a priority internationally. The aim of this study was to establish the proportion of inpatients within one acute hospital in New Zealand who meet prognostic criteria for palliative care need and explore key aspects of their management.MethodsA prospective survey of adult hospital inpatients (n = 501) was undertaken. Case notes were examined for evidence that the patient might be in their last year of life according to Gold Standards Framework (GSF) prognostic indicator criteria. For patients who met GSF criteria, clinical and socio-demographic information were recorded.ResultsNinety-nine inpatients met GSF criteria, representing 19.8% of the total census population. The patients’ average age was 70 years; 47% had a primary diagnosis of cancer. Two thirds had died within 6 months of their admission. Seventy-eight of the 99 cases demonstrated evidence that a palliative approach to care had been adopted; however documentation of discussion about goals of care was very limited and only one patient had evidence of an advance care plan.ConclusionOne fifth of hospital inpatients met criteria for palliative care need, the majority of whom were aged >70 years. Whilst over three quarters were concluded to be receiving care in line with a palliative care approach, very little documented evidence of discussion with patients and families regarding end of life issues was evident. Future research needs to explore how best to support ‘generalist’ palliative care providers in initiating, and appropriately recording, such discussions.

Can we predict which hospitalised patients are in their last year of life? A prospective cross-sectional study of the Gold Standards Framework Prognostic Indicator Guidance as a screening tool in the acute hospital setting

Background: Screening to identify hospital inpatients with a short life expectancy may be a way to improve care towards the end of life. The Gold Standards Framework Prognostic Indicator Guidance is a screening tool that has recently been advocated for use in the hospital setting. Aim: To assess the clinical utility of the Gold Standards Framework Prognostic Indicator Guidance as a screening tool in an acute hospital setting. Main outcome measures: Mortality at 6 and 12 months and sensitivity, specificity and predictive value of the Gold Standards Framework Prognostic Indicator Guidance at 1 year. Design, setting and participants: Prospective cross-sectional study of 501 adult inpatients in a tertiary New Zealand teaching hospital screened utilising the Gold Standards Framework Prognostic Indicator Guidance. Results: A total of 99 patients were identified as meeting at least one of the Gold Standards Framework Prognostic Indicator Guidance triggers. In this group, 6-month mortality was 56.6% and 12-month mortality was 67.7% compared with 5.2% and 10%, respectively, for those not identified as meeting the criteria. The sensitivity and specificity of the Gold Standards Framework Prognostic Indicator Guidance at 1 year were 62.6% and 91.9%, respectively, with a positive predictive value of 67.7% and a negative predictive value of 90.0%. Conclusion: The sensitivity, specificity and predictive values of the Gold Standards Framework Prognostic Indicator Guidance in this study are comparable to, or better than, results of studies identifying patients with a limited life expectancy in particular disease states (e.g. heart failure and renal failure). Screening utilising the Gold Standards Framework Prognostic Indicator Guidance in the acute setting could be the first step towards implementing a more systematic way of addressing patient need – both current unrecognised and future anticipated – thereby improving outcomes for this population.

‘No matter what the cost’: A qualitative study of the financial costs faced by family and whānau caregivers within a palliative care context

Background: There has been significant attention paid in recent years to the economic costs of health service provision for people with palliative care needs. However, little is known about the costs incurred by family caregivers who typically provide the bulk of care for people at the end of life. Aim: To explore the nature and range of financial costs incurred by family caregiving within a palliative care context. Design: In-depth qualitative interviews were conducted with 30 family/whānau caregivers who were currently caring for someone with a life-limiting illness or had done so within the preceding year. Narrative analysis was used to identify impacts and costs at the personal, interpersonal, sociocultural and structural levels. Setting: Auckland, New Zealand. Findings: Costs of caregiving were significant and, for participants, resulted in debt or even bankruptcy. A range of direct (transport, food and medication) and indirect costs (related to employment, cultural needs and own health) were reported. A multi-level qualitative analysis revealed how costs operated at a number of levels (personal, interpersonal, sociocultural and structural). The palliative care context increased costs, as meeting needs were prioritised over cost. In addition, support from statutory service providers to access sources of financial support was limited. Conclusion: Families incur significant financial costs when caring for someone at the end of life. Research is now needed to quantify the financial contribution of family and whānau caregiving within a palliative care context, particularly given attempts in many countries to shift more palliative care provision into community settings.

Clinical staff perceptions of palliative care-related quality of care, service access, education and training needs and delivery confidence in an acute hospital setting

Context Central to appropriate palliative care management in hospital settings is ensuring an adequately trained workforce. In order to achieve optimum palliative care delivery, it is first necessary to create a baseline understanding of the level of palliative care education and support needs among all clinical staff (not just palliative care specialists) within the acute hospital setting. Objectives The objectives of the study were to explore clinical staff: perceptions concerning the quality of palliative care delivery and support service accessibility, previous experience and education in palliative care delivery, perceptions of their own need for formal palliative care education, confidence in palliative care delivery and the impact of formal palliative care training on perceived confidence. Methods A purposive sample of clinical staff members (598) in a 710-bed hospital were surveyed regarding their experiences of palliative care delivery and their education needs. Results On average, the clinical staff rated the quality of care provided to people who die in the hospital as ‘good’ (x̄=4.17, SD=0.91). Respondents also reported that 19.3% of their time was spent caring for end-of-life patients. However, only 19% of the 598 respondents reported having received formal palliative care training. In contrast, 73.7% answered that they would like formal training. Perceived confidence in palliative care delivery was significantly greater for those clinical staff with formal palliative care training. Conclusions Formal training in palliative care increases clinical staff perceptions of confidence, which evidence suggests impacts on the quality of palliative care provided to patients. The results of the study should be used to shape the design and delivery of palliative care education programmes within the acute hospital setting to successfully meet the needs of all clinical staff.

A qualitative study exploring the benefits of hospital admissions from the perspectives of patients with palliative care needs

Background: The acute hospital plays a significant role in caring for people with a life-limiting illness. Most research to date has focused exclusively upon the negative aspects of hospitalisation. Currently, there is little known about the benefits of hospital admissions for patients with palliative care needs. Aim: The aim of this study was to explore the benefits of hospital admissions, from the perspectives of patients with palliative care needs. Design: A qualitative study design was adopted. Longitudinal, semi-structured, face-to-face interviews were used to elicit the views of patients admitted to hospital in one large urban acute hospital in New Zealand. Setting/participants: The study sample comprised 14 patients admitted to Auckland City Hospital between July 2013 and March 2014 who met one of the Gold Standard Framework Prognostic Indicators for palliative care need. Results: Through a process of thematic analysis, four themes were identified from the data: being cared for and feeling safe, receiving care to manage at home, relief for family and ‘feeling better and/or getting better’. The benefits of being in hospital were reported to extend beyond treatments received. Most participants reported their preference was to come to hospital even if they had been able to access the care they received in hospital at home. Conclusion: This research contributes to a greater understanding of the benefits associated with hospitalisation for patients with palliative care needs. The findings suggest that such benefits extend beyond the treatment patients receive and challenge current assumptions regarding the role of the acute hospital in palliative care.

The ‘problematisation’ of palliative care in hospital: an exploratory review of international palliative care policy in five countries

BackgroundGovernment policy is a fundamental component of initiating change to improve the provision of palliative care at a national level. The World Health Organisation’s recognition of palliative care as a basic human right has seen many countries worldwide develop national policy in palliative and end of life care. There is increasing debate about what form comprehensive palliative care services should take, particularly in relation to the balance between acute and community based services. It is therefore timely to review how national policy positions the current and future role of the acute hospital in palliative care provision. The aim of this exploratory review is to identify the role envisaged for the acute hospital in palliative and end of life care provision in five countries with an ‘advanced’ level of integration.MethodCountries were identified using the Global Atlas of Palliative Care. Policies were accessed through internet searching of government websites between October and December 2014. Using a process of thematic analysis key themes related to palliative care in hospital were identified.ResultsPolicies from Switzerland, England, Singapore, Australia and Ireland were analysed for recurring themes. Three themes were identified: preferences for place of care and place of death outside the hospital setting, unnecessary or avoidable hospital admissions, and quality of care in hospital. No policy focused upon exploring how palliative care could be improved in the hospital setting or indeed what role the hospital may have in the provision of palliative care.ConclusionsPalliative care policy in five countries with ‘advanced’ levels of palliative care integration focuses on solving the ‘problems’ associated with hospital as a place of palliative care and death. No positive role for hospitals in palliative care provision is envisaged. Given the rapidly increasing population of people requiring palliative care, and emerging evidence that patients themselves report benefits of hospital admissions, this area requires further investigation. In particular, a co-design approach to policy development is needed to ensure that services match the needs and wants of patients and families.

The extent and cost of potentially avoidable admissions in hospital inpatients with palliative care needs: a cross-sectional study

Objective More than 90% of people spend time in hospital in the last year of life and, in many developed countries, hospitals are the setting in which most people will die. Previous research indicates that a proportion of these hospital admissions could have been avoided. The objective of this study was to establish the extent and cost of potentially avoidable hospital admissions among patients with palliative care needs. Methods A prospective survey of hospital inpatients was undertaken to identify patients who met clinical criteria indicating palliative care need. Case notes were reviewed by two expert palliative care clinicians to determine if the hospital admission was potentially avoidable. An analysis of the cost of potentially avoidable admissions compared to all other admissions for those patients identified as being in the last year of life was carried out using the statistical analysis software R V.2.15.1. Logistic regression was performed using the logit (log of OR) link. The binary outcome of the logistic regression model was a potentially avoidable admission. Results Of the 99 patients who met the criteria for palliative care need, 22 were deemed to have experienced a potentially avoidable admission. Those living in a residential aged care facility were more at risk of experiencing such admissions. The mean total cost of hospital care for those with palliative care needs was lower for those whose admission was deemed potentially avoidable. Conclusions A significant proportion of patients with palliative care needs experience a potentially avoidable admission. Although these admissions are relatively short compared to those whose admissions are unavoidable, any hospital admission impacts on the experiences of patients and families and may contribute to unnecessary hospital expenditure.

Burnout matters: The impact on residential aged care staffs’ willingness to undertake formal palliative care training

Abstract Introduction Palliative care delivery has become integral to the role of healthcare staff in residential aged care (RAC) internationally. Challenges within this work environment (e.g. workload, staffing levels, resources) may impact on healthcare staffs’ willingness to undertake formal palliative care education. The study described herein explored factors (socioenvironmental and psychological) that influence staff willingness to engage in palliative care education. Methods The predictors of palliative care education uptake for healthcare staff (n = 431) from 52 New Zealand RAC facilities in one large urban District Health Board were assessed. Logistic regression was used to explore willingness to engage in education. Results Higher scores for burnout predicted a decreased likelihood of engaging in palliative care education (odds ratio (OR) 0.41, P = 0.01). The identified predictor of willingness to engage in education was previous palliative care experience (OR 1.59, P = 0.027). Discussion These results can inform the design and delivery of future palliative care education programmes within RAC.