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Aim: As adult specialist inpatient hospice provision in the United Kingdom has matured, interest in the question of 'access' to care has grown. The evidence base on geographic accessibility is limited. This study examines whether geographic and socio-demographic accessibility to, and utilisation of, specialist inpatient hospices is equitable. Methods: A selective literature review critically examines the evidence on access to specialist inpatient hospices and specialist palliative care services. Inequalities in the availability of specialist inpatient hospices across the United Kingdom are summarised, analysed and mapped using a geographic information system. The geographic supply of, and demand for, adult specialist inpatient hospices across England and Wales are mapped by small area, and related to levels of deprivation. Specialist inpatient hospice accessibility scores are derived using a Newtonian distance decay model that analyses drive times between 189 inpatient hospices and 34,378 small areas. Inequities in access to specialist inpatient hospices are mapped. The utilisation of specialist inpatient hospices, across England, is examined for a variety of patient groups. A multivariate binary logistic regression analysis, undertaken on 378,482 adult cancer death records, models whether access, deprivation, age, gender and region influence the likelihood of dying in a specialist inpatient hospice. Results: A complex interaction of geographic, socio-demographic, healthcare system, clinical need, personal, cultural, societal and political factors impacts on the accessibility and utilisation of specialist inpatient hospices. Widespread regional variations in the geographic availability of specialist inpatient hospices are revealed. The highest levels of geographic access to adult specialist inpatient hospices are found within major urban conurbations, where cancer patients may potentially access alternative hospices with high bed numbers. Local examples of inequitable access are observed within neighbourhoods of many cities and towns, and across rural fringe counties. Over 6% of adults live at least 30 minutes from a specialist inpatient hospice. Once effects attributable to other variables are accounted for, significant gradients are shown, nationally, by decile of accessibility, relative level of affluence or deprivation, and age, in the likelihood of dying in a specialist inpatient hospice. Notable geographical 'distance decay' effects are clear within the most inaccessible and accessible areas. For 80% of patients, a gradual gradient in utilisation, by decile of accessibility, is shown, though patients from the most accessible decile of areas are 2.79 times more likely to die in a specialist inpatient hospice than are those from least accessible areas. There is evidence of 'inverse care' effects, whereby patients with potentially greater levels of need, show lower utilisation ratios. Patients from the most affluent decile of areas are 1.38 times more likely to die in a specialist inpatient hospice than are those from the poorest areas. The youngest decile banding of patients are 3.86 times more likely to die in a specialist inpatient hospice than the most elderly banding. Implications: Inequitable geographic access has implications for the establishment of future specialist inpatient hospices and integrated models of specialist palliative care.

This thesis is a sociological history and critique of hospice and palliative care: their goals, narratives, and social, clinical and ethical practices. Hospice developed in Britain as a result of and challenge to interventionist biomedicine within hospitals where dying came to be viewed as medical failure. From the mid twentieth century hospice was promoted as a 'philosophy of care' that had at its locus a concept of 'whole' person family care for people who are dying. For the first tune patients and then: relatives became the unit of care. Henceforth, hospice established for itself three major 'goals'; (1) hoUstic symptom management, (2) acting as a surrogate family for dying persons and their relatives in an atmosphere of homeliness where staff (3) worked together in non-hierarchical multidisciplmary teams. The hospice agenda m caring for the dying aimed to 'promote living and even to facihtate personal growth during the dying process' (Moller, 1996:40). This was postulated as the ideal standard in offering humane care to the dying patient and for achieving a 'good death'. For many years hospice philosophy was practiced in volimtary hospices that were charitable organisations deliberately located outside the National Health Service. An exponential growth in the number of such organisations during the 1970s and 1980s spawned a movement which subsequently led to the creation of a new medical specialty in 1987, that of palliative medicine. Hospices' 'grand narrative' refers to the dominant 'official' story about their development and about the activities that were or are carried out withm them. In addition to offering a new way of looking at hospice history, I used the 'goals' of hospice as espoused in the 'grand narrative' to guide my observations in two hospices in one British region. I explore how hospice professionals employ methods of control that help both manage the dying process and maintain institutional order. The study took place over a four year period with the aim of determining to what extent the 'grand narrative' matched practice or whether as Lawton (2000) proposed there is a 'gap between rhetoric and reahty' of hospice care. This thesis represents a challenge to hospice, a refusal to valorise the story proponents have told and continue to tell about the practices that are carried out under the banner 'hospice' and more recently palliative care/medicine.

The provision of care at the end of life is currently considered to be global public health issue. This thesis explores prominent issues within palliative care from the perspectives of patients with palliative care needs, and also from the perspectives of professionals working within that context. Firstly, a literature review focuses on the communication experiences of patients with palliative care needs. A meta-synthesis of 15 qualitative studies exploring patients' perspectives yielded four overarching themes: 'Talking: facilitating and inhibiting factors'; 'The importance of humanitarian qualities'; 'Perceptions of autonomy within communication experiences' and 'Individual differences in preferences for honesty within interactions'. Overall the findings highlighted the complexity of the communication experiences of patients with palliative care needs. Secondly, a research paper explores palliative care professionals' experiences of unusual spiritual phenomena at the end of life. Interpretative Phenomenological Analysis [IP A] was used to identify four overarching themes within the accounts of eight palliative care professionals which captured the essence of their experiences. These were: "Who are we to say what's out there?": A connection with something beyond what can be seen; "It opened up conversations"; The experience of talking about unusual experiences; "It knocked me sideways": Managing the emotional impact of these experiences; "The fact she was so accepting made it easier": The value of acceptance in relation to unusual experiences. These findings emphasise the need for palliative care services to take a proactive approach to the discussion of unusual phenomena at the end of life. Finally, a critical review presents a personal reflection on the process of researching palliative care professionals' experiences of unusual phenomena at the end of life. Specifically, this review outlines reflections on undertaking IPA, the challenges of conducting research on unusual phenomena with health care professionals, and the experience of using a reflexive journal.

The kind of diseases affecting Japanese people and the causes of death in Japan have changed a great deal in the last several decades due to various factors, most notably the advancement of medical technology and changes in life style. The number of people who die from life style diseases such as cancer, which are chronic and possibly need long-term hospitalization, increases every year. In the 1970s the hospice philosophy was introduced to Japan from the West. It encourages patients and their families to affirm life and to regard dying as a normal process, and offers a support system to help patients live as actively as possible and sustain a sense of selfhood, autonomy, and dignity until they die. In practice, however, the dying process is still not regarded as normal in contemporary Japan and many patients fail to die in the way proposed by the hospice philosophy. There is also disagreement between the patients and the medical professionals regarding their respective idea of good death. Hospices and PCUs, which were initially developed in order to provide humane care, have become places which provide a new form of institutionalized death, and consequently constrain the patients' dying patterns. In this thesis, I investigate the above issues from the perspectives of the anthropology and the ethnography of Japan. I demonstrate how the framework of van Gennep's rites of passage and Turner's concept of liminality can be used to analyze the current situation in Japanese hospice settings. I also perform an ethnographic analysis of Japanese attitudes towards health, illness, and death in order to illustrate the reasons why some Japanese patients fail to die a good death as proposed by the hospice philosophy.

The rationale for this study arose from the researcher’s own practice as a children’s hospice counsellor, being given the challenge of providing emotional support to all those wishing to access a counselling service within a children’s hospice. How could one counsellor fulfil such a responsibility? What was meant by the term “support?” What part did the hospice’s multi-disciplinary team play within the provision of this support? Such questions, the researcher felt, needed to be put to a wider audience and the aim of this study was to examine children’s hospice counsellors’ practice of assessing needs and implementing pre and post bereavement support to children/young people and their families who access a U.K. children’s hospice service. A phenomenological approach was adopted and in-depth, semi-structured interviews with seven children’s hospice counsellors were transcribed verbatim. The researcher identified salient information and categorised forming themes using thematic analysis. Quotes were selected that captured the semantics of these themes.The main findings were that pre-bereavement support activities were being provided by members of the hospices’ multi-disciplinary teams. The assessment of needs during the this stage was found to be carried out by members of the nursing staff encompassing medical as well as psycho-social needs. It was also discovered that children’s hospice counsellors were more actively engaged in post-bereavement support and informally assessing bereavement needs. In addition, bereavement needs assessment was being carried out by a variety of professionals who had had some involvement with the family during the pre-bereavement stage.Implications of the findings suggested that counsellors could be more actively involved in pre-bereavement assessment of families’ needs. It was also indicated from the results that in-depth training on anticipatory grief and the grieving process, as well as supervision of other professionals supporting family members, could be delivered by children’s hospice counsellors.It was recommended that the subject of assessment of both pre and post bereavement needs of the diverse client groups accessing support services be opened up for wider debate and dialogue within the arena of children’s hospice services and paediatric palliative care.