Naomi Richards

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.

Exploring education and training needs among the palliative care workforce

Objectives Education and training are seen as ‘absolutely essential parts of providing palliative care’. As part of a larger study to explore the extent of palliative care need in two acute hospital settings, we report the perceptions of healthcare professionals regarding their training and educational needs. Methods In Phase 1, we undertook eight focus groups and four individual interviews with 58 health professionals from general practice, specialist palliative care and acute hospitals, exploring perceived education and training priorities. Phase 2 of the study involved a survey of palliative care need at two hospitals in England. Hospital based doctors and nurses completed questionnaires to identify patients with palliative care needs and to respond to questions about their training and education needs. Results Various barriers exist to the provision and management of palliative care, not least a need for more education and training. Focus group participants felt they were not adequately trained to address prognosis and goals of care with patients and their families. In Phase 2 of the study, 171 nursing staff and 81 medical staff completed the questionnaire and two-thirds of our sample felt they required additional training in palliative care. Conclusions Although important, the use of standardised care pathways alongside the provision of education and training for healthcare professionals alone will not improve quality of care. More work is needed to examine and clarify the interplay of: behaviour change, setting, the ‘cure’ orientation approach, type of health professional and nature of any educational intervention in order to effect sustained behavioural change.

Desperately Seeking Certainty? The Case of Asylum Applicants and People Planning an Assisted Suicide in Switzerland

Uncertainty is often deemed to be a quintessential fact of life. The social scientific literature often references a generalised or ‘global’ uncertainty, akin to a worldview. Far fewer studies, however, discuss the specific effects of ‘event’ focused uncertainty: how it is managed by groups and individuals, or how this type of uncertainty relates to the concepts of risk, trust, hope and time. This article seeks to identify and analyse key aspects of the condition of uncertainty through an empirical exploration of two very different case studies: asylum applicants waiting for the state to decide whether to grant them the right to remain in the UK, and people with chronic or life-limiting illness who want to hasten their own death with the help of a Swiss right-to-die organisation. In both cases, participants experienced a heightened state of uncertainty because of specific and substantial threats to their well-being: deportation, and protracted suffering through illness. In both cases, the acquisition of knowledge was considered to aid predictions about future events. However, both sets of individuals encountered barriers to acquiring the right kind of knowledge - knowledge which was trusted to be accurate or which came with a guarantee. While all the individuals were constrained in their ability to act to relieve their uncertainty, they found limited ways of doing so. Knowledge and action are thereby found to be crucial to the condition of uncertainty and to the means of overcoming it through restoring a sense of control.

Economic analysis of potentially avoidable hospital admissions in patients with palliative care needs

Abstract Background There is a widely acknowledged need to understand more fully the economics of palliative care provision in the UK. In particular, the economic impact of reducing avoidable hospital admissions among patients with palliative care needs has not been extensively researched. Aim A recent survey of two English hospitals identified patients with palliative care needs and the proportion of these patients whose admission was potentially avoidable. Using these data, the economic impact of avoiding such hospital admissions is estimated. Methods Costs were estimated by attaching an Health Resource Group (HRG) code to each admission classified as potentially avoidable in order to determine the possible savings to be made. Alternative places of care for these patients were identified and estimates of the cost of supporting patients in these locations were derived using published unit costs. Results In the two hospitals surveyed, our study suggested that 7% of patients with palliative care needs could have been cared for elsewhere. The estimated cost saving of avoiding these admissions and supporting these patients in the community was £1527 for both hospitals over the survey period. This extrapolates to savings of around £180 000 per annum. Results were most sensitive to the cost perspective used and the estimated cost of the avoided hospital admissions. This exploratory analysis was limited by small study size and uncertainty in the costings. Conclusions Further research is required to gain a better understanding of the economic consequences of potentially avoidable hospital admissions and the extent of variations between localities and to clarify disparities in identified costs.

Interventions at the end of life – a taxonomy for ‘overlapping consensus’

Context: Around the world there is increasing interest in end of life issues. An unprecedented number of people dying in future decades will put new strains on families, communities, services and governments. It will also have implications for representations of death and dying within society and for the overall orientation of health and social care. What interventions are emerging in the face of these challenges? Methods: We conceptualize a comprehensive taxonomy of interventions, defined as ‘organized responses to end of life issues’. Findings: We classify the range of end of life interventions into 10 substantive categories: policy, advocacy, educational, ethico-legal, service, clinical, research, cultural, intangible, self-determined. We distinguish between two empirical aspects of any end of life intervention: the ‘locus’ refers to the space or spaces in which it is situated; the ‘focus’ captures its distinct character and purpose. We also contend that end of life interventions can be seen conceptually in two ways – as ‘frames’ (organized responses that primarily construct a shared understanding of an end of life issue) or as ‘instruments’ (organized responses that assume a shared understanding and then move to act in that context). Conclusions: Our taxonomy opens up the debate about end of life interventions in new ways to provide protagonists, activists, policy makers, clinicians, researchers and educators with a comprehensive framework in which to place their endeavours and more effectively to assess their efficacy. Following the inspiration of political philosopher John Rawls, we seek to foster an ‘overlapping consensus’ on how interventions at the end of life can be construed, understood and assessed.

Assisted Suicide as a Remedy for Suffering? The End-of-Life Preferences of British “Suicide Tourists”

ABSTRACT The highly charged debate about the moral status of assisted suicide features regularly in the news media in medically advanced countries. In the United Kingdom, the debate has been dominated in recent years by a new mode of death: assisted suicide in Switzerland, so-called suicide tourism. Drawing on in-depth interviews with people who were actively planning on ‘going to Switzerland,’ alongside participant-observation at a do-it-yourself self-deliverance workshop, I discuss how participants arrived at their decision to seek professionalized assistance. In doing so, I explore the constituent elements of people’s suffering, examining how participants justified, rationalized, or sought authentication from a doctor for their decision to die in light of their own belief systems and aesthetic preferences for a good death.

‘I Don’t See Many Images of Myself Coming Back at Myself’: Representations of Women and Ageing

In twenty-first century Western society, there is an obsession with youthfulness (Walters, 2010): popular culture presents women’s (hetero)sexual allure as their passport to success (Bartky, 1990; Bordo, 1993) and images of ageing, if visible at all (Zhang et al., 2006), are increasingly influenced by the discourses of the anti-ageing industry (Calasanti, 2007; Hurd Clarke, 2011). The Second World Assembly on Ageing (United Nations, 2002) recognized a need to challenge stereotyped images of ageing, particularly in relation to older women. The use of visual methods as a means of allowing older women to articulate their experiences of ageing is one way of doing this but, to date, ‘ordinary’ older women have had few opportunities to either comment on, or create, their own images of ageing and old age. This chapter gives details of one research initiative which has aimed to do precisely that. Representing Self — Representing Ageing (RSRA)1 brought together an interdisciplinary team united through a commitment to the use of participatory visual methods. The project has been designed to enable older women to work together to identify and critique dominant images of women in popular culture and to use creative media to make their own individual images of ageing. Resultant artwork has been displayed in an exhibition entitled Look at Me! held in a range of venues in the UK and capturing public responses to these ‘alternative’ images.

Palliative care for frail older people: A cross- sectional survey of patients at two hospitals in England

Abstract Background The majority of deaths in the UK occur in acute hospitals, and older people have the highest hospital death rates. Improved palliative care for older people has been identified as an international priority, yet little is known about the profile of older patients with palliative care needs in hospitals. Objective To describe the profile of older hospital inpatients (≥85 years), and to explore the prevalence and nature of palliative care needs among this group. Methods A cross-sectional survey of palliative care need in older people 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. Patients (or consultees) completed assessments of palliative care need. Subjects Data were collected for 654 consenting patients/consultees. This paper describes data from 110 patients aged ≥85 years. Results Forty per cent of the older patients were identified as having palliative care needs according to GSF criteria. Frailty was the most common indicator of palliative care need (16.7%). The most common reason for admission to hospital was general frailty (25.5%). Conclusions While this study is limited by its small sample size, the results suggest that older people with frailty conditions constitute a substantial proportion of hospital inpatients with palliative care needs. However, it is unclear whether a specialist palliative care framework is the most appropriate model for this group. The care provided to older people at the end of life may best be provided by generalists such as geriatricians, as part of a comprehensive generalist-led palliative care framework.

A moment for compassion: emerging rhetorics in end-of-life care

Compassion is an emotional response to the suffering of others. Once felt, it entails subsequent action to ameliorate their suffering. Recently, ‘compassion’ has become the flagship concept to be fostered in the delivery of end-of-life care, and a rallying call for social action and public health intervention. In this paper, we examine the emerging rhetorics of compassion as they relate to end-of-life care and offer a critique of the expanding discourse around it. We argue that, even where individuals ‘possess’ compassion or are ‘trained’ in it, there are difficulties for compassion to flow freely, particularly within Western society. This relates to specific sociopolitical structural factors that include the sense of privacy and individualism in modern industrialised countries, highly professionalised closed health systems, anxiety about litigation on health and safety grounds, and a context of suspicion and mistrust within the global political scenario. We must then ask ourselves whether compassion can be created intentionally, without paying attention to the structural aspects of society. One consequence of globalisation is that countries in the global South are rapidly trying to embrace the features of modernity adopted by the global North. We argue that unrealistic assumptions have been made about the role of compassion in end-of-life care and these idealist aspirations must be tempered by a more structural assessment of potential. Compassion that is not tied to to realistic action runs the risk of becoming empty rhetoric.

Euthanasia and Policy — Choosing When to Die

In medically advanced countries, voluntary euthanasia and assisted suicide are hotly debated issues across all strata of society. Legislation permitting the practice of hastening your own death with help from a third party has now been passed or is pending in a number of US states, Canada, Switzerland, Belgium, Luxembourg, and the Netherlands. Parliamentary bills which would legalise a form of assisted suicide were also debated by the UK and Scottish parliaments in 2015. The beliefs that people hold about the practice are hugely influenced by their own first-hand experiences of illness and death (Hendry et al., 2013; Judd and Seale, 2011), as much as by any pre-existing moral code stemming from religious and cultural teachings or otherwise. The social and legal sanctioning of voluntary euthanasia and assisted suicide may divide opinion, but the fact that so many people appear to hold and are prepared to vocalize strong opinions about an issue relating to death and dying is unusual, given that a number of social taboo which still operates to regulate discussions about the end of life more generally (Walter, 1991). In many ways, the high profile occupied by the voluntary euthanasia and assisted suicide debate has facilitated public discussion of broader issues to do with the ways in which people die in the twenty-first century.