Rosemary Frey

Exploring the financial impact of caring for family members receiving palliative and end-of-life care: A systematic review of the literature

Background: Research regarding the economic dimensions of palliative care is relatively limited. The economic implications of providing informal care are well recognised; however, within the context of palliative care, little is known about the costs and implications of providing care for a loved one at the end of life. Aim: To explore the financial costs and the financial impact of caring for family members receiving palliative/end-of-life care. Design: A systematic literature review of empirical research following Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines. Data Sources: Seven electronic databases were searched from inception to April 2012. Inclusion criteria were as follows: articles relating to the financial costs or implications of family caregiving at the end-of-life care, English language articles, empirical research or systematic reviews and articles relating to adults. Results: The review identified 21 relevant articles; however, evidence relating to the costs and implications of caregiving was relatively limited. The results indicate that the financial costs of caring for someone at the end of life are substantial. Financial costs can result in significant and multidimensional caregiver burden. Various factors were found to mediate the extent of financial burden. Conclusions: This review identified a significant gap in the evidence base regarding the economic implications of providing care to a family member within a palliative care context. Economic costs and implications are likely to be significant, and research to address this gap is urgently needed, particularly given policy initiatives in a number of developed countries to move the provision of palliative and end-of-life care from hospital to community settings.

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.

‘Where do I go from here’? A cultural perspective on challenges to the use of hospice services

Do hospice services as shaped by a western perspective adequately fulfil the needs of persons from non-Western cultures? Based on a Western view of palliative care, the vision outlined in the New Zealand Palliative Care Strategy (2001) is to deliver palliative care services, including hospice services, to all patients and their families requiring them in the context of an increasingly pluralistic and multicultural society. It is predicted that over the next two decades the proportion of people identifying as Māori, Pacific and Asian will dramatically increase within New Zealand. Ministry of Health information provided through a GAP analysis identified hospices as facing access-to-care pressures for Māori, Pacific and Asian patients. It is therefore critical to identify the challenges to hospice service access for Māori, Asian and Pacific patients. This project involved qualitative interviews with 37 cancer patients (Māori, Pacific and Asian self-identified ethnicities), whānau/family and bereaved whanua/family, as well as 15 health professionals (e.g. referring GPs, oncologists, allied health professionals) within one District Health Board. Patients and their families included both those who utilised hospice services, as well as those non-users of hospice services identified by a health professional as having palliative care needs. Challenges to hospice service utilisation reported in the findings include a lack of awareness in the communities of available services, as well as continuing misconceptions concerning the nature of hospice services. Language barriers were particularly reported for Asian patients and their families. Issues concerning the ethnic representativeness of the hospice services staff were raised. The findings highlight the importance of patient and family knowledge of hospice care for utilisation of services. This information can be used for future planning to enable hospices to both provide high quality evidence based palliative care services for patients and families and provide consultative services to primary healthcare providers in the community.

Instruments used to measure the effectiveness of palliative care education initiatives at the undergraduate level: a critical literature review

Background The increase in the numbers of patients with palliative care needs has resulted in growing pressures on the small number of specialist palliative care providers within the New Zealand context. These pressures can potentially be eased by ensuring an adequately trained workforce, beginning with undergraduate training in the healthcare field. The goal of the present review is to ascertain what tools exist to measure the effectiveness of undergraduate palliative care education initiatives. Method A systematic review of qualitative and quantitative literature was undertaken. Searches within ERIC, CINAHL Plus, Medline and Medline in Progress, and Google Scholar databases were conducted for the period 1990–2011. A checklist adapted from Hawker et al was used to select and assess data. Results 14 of the 112 articles met the inclusion criteria. Overall inconsistencies in the amount of validation information provided and a narrow focus on aspects of palliative care competence was apparent. No universally applicable validated questionnaire to assess the effectiveness of undergraduate palliative care education could be identified. Conclusions The increased focus by educational institutions on instilling palliative care skills in healthcare students necessitates the development of comprehensive and validated tools to evaluate the effectiveness of education initiatives.

What is the incidence of patients with palliative care needs presenting to the Emergency Department? A critical review

Background: Given the context of ageing populations globally, there are a growing number of patients with chronic conditions, some of whom are in the final stages of their disease trajectory, presenting to Emergency Departments. Aim: The aim was to estimate the incidence of patients with palliative care needs presenting to the department. Methods: Three databases (MEDLINE, CINAHL and Embase) were systematically searched up to August 2012. The reference lists of included articles were searched as well as Google and Google Scholar. Only studies in English were included. Two reviewers independently reviewed studies at the abstract and full-body stages. A critical review using systematic methods was undertaken as statistical analysis could not be done because of a lack of information. Results: Only 10 of 1427 identified records met the inclusion criteria. Different definitions of palliative care were evident. One article provided an incidence density for patients with non-small cell lung cancer, and we calculated the mean presentations to be 52.5 per 100 person-months. Two articles focussed on patients known to palliative care services; we estimated that 2.5 in 1000 Emergency Department visits were made by these patients. The review demonstrated that the studies were so different it was not possible to compare the data. Conclusion: There is an absence of evidence regarding the incidence of patients with palliative care needs presenting to the Emergency Department. Further research needs to be undertaken in this area to ensure both clinicians and policymakers have sufficient information for service provision.

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.

‘It's my pleasure?’: the views of palliative care patients about being asked to participate in research

Abstract Background There is a paucity of studies which explore palliative care patients’ involvement in research. The involvement of patients with a life-limiting illness in research raises numerous ethical concerns for researchers keen to take account of their views and experiences of service provision. Assumptions are readily made about whether participation is appropriate for this patient group due to their perceived vulnerability. Aim To explore the views of hospice users regarding their motivations for taking part in a study, designed to inform the delivery of care, and ensure ongoing service improvement. Methods Based on a larger pilot study to examine patients’ satisfaction with hospice care, and using a qualitative interview approach, twenty-one patients under the care of three hospices in the Auckland region of New Zealand took part. Interviews were recorded and transcribed verbatim. Data were analysed using a thematic analysis technique. Results The involvement of hospice users in research is important and has the capacity to produce a diverse, but significant impact on those involved. Not only does their involvement demonstrate the potential to shape service provision, it also reveals the therapeutic benefits to individuals with a life-limiting illness of simply taking part. Of particular importance is the view that participation enables a sense of personhood to be maintained circumventing the potential of a ‘social death’. Unless they are unable to consent, palliative care patients should be regarded as autonomous individuals and given the opportunity to participate in research.

What questionnaires exist to measure the perceived competence of generalists in palliative care provision? A critical literature review

Background The increase in the numbers of patients requiring palliative care input prior to death, and a global economic situation where few countries are able to invest further in specialist palliative care services, has meant an increased focus upon ‘generalist palliative care provision’. The goal of the present review is to ascertain what questionnaire tools exist to measure the perceived competence of generalists in palliative care provision. Method A systematic review of both qualitative and quantitative literature was undertaken. Medline, Medline in Progress, PubMed and CINAHL databases as well as hand searches of Palliative Medicine, International Journal of Palliative Nursing and the Journal of Palliative Care were conducted for the period 1990–2010. A checklist adapted from Hawker et al (Appraising the evidence: reviewing disparate data systematically. Qual Health Res 2002;12:1284–99) was used to select and assess data. Results 19 of the 1361 articles met the inclusion criteria. Overall, a lack of validation and a focus upon the physical aspects of symptom management was apparent. No single validated questionnaire to measure perceived competence in palliative care management among health professionals involved in generalist palliative care management could be identified. Conclusion The rising prominence paid to generalist care provision points to an urgent need for further development of comprehensive and validated perceived competence measurement tools.