Can comprehensive specialised end-of-life care be provided at home? Lessons from a study of an innovative consultant-led community service in the UK.

The Midhurst Macmillan Specialist Palliative Care Service (MMSPCS) is a UK, medical consultant-led, multidisciplinary team aiming to provide round-the-clock advice and care, including specialist interventions, in the home, community hospitals and care homes. Of 389 referrals in 2010/11, about 85% were for cancer, from a population of about 155 000. Using a mixed method approach, the evaluation comprised: a retrospective analysis of secondary-care use in the last year of life; financial evaluation of the MMSPCS using an Activity Based Costing approach; qualitative interviews with patients, carers, health and social care staff and MMSPCS staff and volunteers; a postal survey of General Practices; and a postal survey of bereaved caregivers using the MMSPCS. The mean cost is about 3000 GBP (3461 EUR) per patient with mean cost of interventions for cancer patients in the last year of life 1900 GBP (2192 EUR). Post-referral, overall costs to the system are similar for MMSPCS and hospice-led models; however, earlier referral avoided around 20% of total costs in the last year of life. Patients and carers reported positive experiences of support, linked to the flexible way the service worked. Seventy-one per cent of patients died at home. This model may have application elsewhere.

Perceived risks around choice and decision making at end-of-life: a literature review.

BACKGROUND: the World Health Organization identifies meeting patient choice for care as central to effective palliative care delivery. Little is known about how choice, which implies an objective balancing of options and risks, is understood and enacted through decision making at end-of-life. AIM: to explore how perceptions of 'risk' may inform decision-making processes at end-of-life. DESIGN: an integrative literature review was conducted between January and February 2010. Papers were reviewed using Hawker et al.'s criteria and evaluated according to clarity of methods, analysis and evidence of ethical consideration. All literature was retained as background data, but given the significant international heterogeneity the final analysis specifically focused on the UK context. DATA SOURCE: the databases Medline, PsycINFO, Assia, British Nursing Index, High Wire Press and CINAHL were explored using the search terms decision*, risk, anxiety, hospice and palliative care, end-of-life care and publication date of 1998-2010. RESULTS: thematic analysis of 25 papers suggests that decision making at end-of-life is multifactorial, involving a balancing of risks related to caregiver support; service provider resources; health inequalities and access; challenges to information giving; and perceptions of self-identity. Overall there is a dissonance in understandings of choice and decision making between service providers and service users. CONCLUSION: the concept of risk acknowledges the factors that shape and constrain end-of-life choices. Recognition of perceived risks as a central factor in decision making would be of value in acknowledging and supporting meaningful decision making processes for patients with palliative care needs and their families.

Barriers to achieving care at home at the end of life: transferring patients between care settings using patient transport services.

Enabling patients to be cared for in their preferred location often involves journeys between care settings. The challenge of ensuring journeys are timely and safe emerged as an important issue in an evaluation of palliative care services, which informed a service redesign programme in three areas of the United Kingdom by the Marie Curie Cancer Care 'Delivering Choice Programme'. This article explores perceptions of service users and key stakeholders of palliative care services about problems encountered in journeys between care settings during end-of-life care. This article draws on data from interviews with stakeholders (n = 44), patients (n = 16), carers (n = 19) and bereaved carers (n = 20); and focus groups (n = 9) with specialist nurses. Data were gathered in three areas of the United Kingdom. Data were analysed using a framework approach. Transport problems between care settings emerged as a key theme. Four particular problems were identified: (1) urgent need for transport due to patients' rapidly changing condition; (2) limited time to organise transfers; (3) the management of specialist equipment and (4) the need to clarify the resuscitation status of patients. Partnership working between Ambulance Services and secondary care is required to develop joint protocols of care to ensure timely and safe transportation between care settings of patients, who are near their end of life. Commissioning of services should be responsive to the complexities of patients' needs and those of their families.

Analysing qualitative data: examples from two studies of end-of-life care.

This article examines the analysis of qualitative data, identifying and explaining some key approaches which researchers may wish to use to contribute to the developing knowledge base of palliative nursing. Drawing on the work of Grbich (1999), practical examples from the authors' own studies of end-of-life care are used to illustrate some of the possibilities for analysing interview and observational data. The article concludes with an examination of the concept of 'rigour' in qualitative inquiry and suggests some practical ways of helping nurses who are new to palliative care research.

Rural palliative care needs: a survey of primary care professionals in Powys, Wales.

The county of Powys in rural Wales has a population of about 125,000 people and no district general hospitals. In 1999, 12 Macmillan general practitioner clinical facilitators were appointed as part of a pilot project aiming to provide a coordinated framework for the commissioning of specialist cancer and palliative care services, extended clinical care to cancer and non-cancer patients, and an educational intervention to raise the standards of generalist palliative care. A survey of facilitators, general practitioners, district nurses and community hospital nurses was undertaken early in the project. Palliative care formed a small but significant part of respondents' workload. Specialist palliative care services were seen as helpful but distant from the patients. Pain and symptom control were seen to be problematic in patients with diagnoses other than cancer. Services that provided 24-hour nursing care at home were thought to be in need of development by most respondents.

Introducing a professional doctorate in nursing and midwifery.

The convergence of a number of factors has led to the emergence of what has come to be known as the 'professional doctorate'. This new doctoral education diverges from the model of research doctorates that have historically predominated for more than a century. The background to these changes and the impetus for the development of this relatively new approach to doctoral preparation is outlined in this article. The infancy of the professional doctorate means little empirical data exist about their operation or their success. In this light, the development of an evaluative framework is described in relation to the implementation of a new professional doctorate for nurses and midwives that has been introduced at the University of Sheffield.

Introducing a professional doctorate in nursing and midwifery.

The convergence of a number of factors has led to the emergence of what has come to be known as the 'professional doctorate'. This new doctoral education diverges from the model of research doctorates that have historically predominated for more than a century. The background to these changes and the impetus for the development of this relatively new approach to doctoral preparation is outlined in this article. The infancy of the professional doctorate means little empirical data exist about their operation or their success. In this light, the development of an evaluative framework is described in relation to the implementation of a new professional doctorate for nurses and midwives that has been introduced at the University of Sheffield.

Quality assurance in palliative care: some of the problems.

This review considers some of the difficulties associated with quality assurance in the context of palliative care. In particular, it will focus on the key question of who should be responsible for assessing quality and the problems of over-reliance on one particular perspective. Problems encountered in formulating criteria, setting standards and developing outcome measures, many of which are exacerbated in the palliative care setting, are discussed. A review of some of the methods currently available for assessing quality and their limitations are delineated. Finally, attention is drawn to some of the practical and methodological difficulties currently confronting palliative care with regard to quality assurance.

Hypnotherapy and cognitive-behaviour therapy in cancer care: the patients' view.

Psychological intervention is not widely available for emotionally distressed patients with cancer. The purpose of this study is to investigate and report on the experiences of eight patients who participated in a programme consisting of hypnotherapy and cognitive-behaviour therapy. Following the 12-session intervention, qualitative analysis of interview data demonstrated that patients had acquired the skills to enable them to cope, both with invasive medical procedures and the psychological traumas they faced. The findings also indicated some initial misconceptions about hypnotherapy and the need to provide a therapy setting sensitive to the needs of cancer patients undergoing active medical treatment.

Needs assessment for palliative care: three projects compared.

Needs assessment remains an inexact yet evolving field of activity in palliative care. One reason for the variable quality of needs assessments in palliative care is the pragmatic orientation that comes from limited time and resources. Consequently a comprehensive approach to palliative care needs assessment is often not achieved. One route to its improvement lies in sharing experiences about techniques and methods in conducting needs assessment studies. In this paper we offer some thoughts on our own experience of conducting needs assessment for palliative care in three separate locations within a single English health region. We describe the context in which the projects were conducted; the background and origin of each study; the aims and methods used; the research process in each case; key findings; as well as the dissemination process and impact of the work. We show some of the different forms which palliative care needs assessment can take and conclude with some general principles intended to improve practice in this challenging area of health services research.

Respite in palliative care: a review and discussion of the literature.

Family caregivers, who are patients' relatives and friends (hereafter called carers), play a significant and arguably most important role in enabling patients to make choices about their place of care during advanced disease and in the terminal phase. Relatively little attention has been directed towards identifying the needs of carers who find themselves in this position and what interventions (if any) might best support them in continuing to provide care to the patient during the illness and dying trajectory. What evidence there is suggests that while some aspects of caring are looked on positively, carers also experience challenges in maintaining their physical and psychological health and their social and financial wellbeing. One common recommendation is that respite facilities be provided. The purpose of this paper is to consider the definitions and assumptions that underpin the term 'respite' and its impact on the physical, psychological and social outcomes of carers in palliative care contexts. We conducted a review of the literature, which involved searching five electronic databases: Web of Science, Medline, CINHAHL, Cochrane Database System Review and Social Sciences Citation Index. The search identified 260 papers, of which 28 related directly to adult respite care in specialist palliative care. These papers were largely concerned with descriptive accounts of respite programmes, guidance on referral criteria to respite services or were evaluating the effects of respite on the patient rather than the impact on the carer. We did not identify any empirical studies assessing the effects of respite provided by specialist palliative care services on carer outcomes. There is insufficient evidence to draw conclusions about the efficacy of offering respite care to support carers of patients with advanced disease. We, therefore, draw on the wider literature on carers of adults with chronic disease to consider the impact of respite services and offer suggestions for further research.

A survey of the perspectives of specialist palliative care providers in the UK of inpatient respite.

One of the major reasons for admission of patients to hospital in late stage disease is the inability of carers to continue to provide care at home. Specialist palliative care services have typically admitted patients for acute symptom control, terminal care and respite care to benefit them and their carers. This paper reports the results of a cross-sectional survey of inpatient respite care provision provided by specialist palliative care services and hospices in the UK. A structured questionnaire was mailed to 242 clinical services managers listed in the Hospice Information Directory in 2003. A 69% response rate was achieved. The questionnaire explored the nature of respite services, their purpose, organization, delivery and examined definitions used. The analysis indicated that 80% of the sample provided inpatient respite care. Most inpatient respite admissions were planned, of fixed duration (7-14 days) and were intended to benefit patients and carers. There was some evidence that respite provision was regarded as a lower priority than admissions for symptom control and terminal care, and that patients' needs were prioritized over those of carers. Only 10% of services conducted regular, routine audit, with very few seeking the views of service users. Findings suggest that carers' needs and wishes are not prioritized by specialist palliative care services offering inpatient respite, which may mean that they find it difficult to maintain their caregiving roles over longer disease trajectories or in the face of overwhelming demands.