Julie Skilbeck

Palliative care in chronic obstructive airways disease: a needs assessment

The view that palliative care should move beyond cancer is widely endorsed, however, there remains a lack of clarity about the level at which this should occur. In order to target the palliative approach effectively, the value of more detailed and localized needs assessment becomes apparent. This paper provides evidence from a study commissioned by a department of public health, where the focus was the palliative care needs of an individual with chronic obstructive airways disease (COAD). Over a six-month period, 63 individuals in the district were interviewed about their experiences of living with COAD and the services utilized, using a combination of qualitative and quantitative research methods. The findings revealed a poor quality of life, relating to a high degree of social isolation and emotional distress, associated with low physical functioning and disability, and physical symptoms. Current service provision focused on acute exacerbations. Consequently, there is a need to manage the health and social care interface more effectively, with a shift in emphasis from reactive ad hoc provision, which is where the palliative approach to care could be best suited to meet the needs identified.

Clinical nurse specialists in palliative care. Part 1. A description of the Macmillan Nurse caseload

Macmillan Nurses play a significant role in specialist palliative care services in the UK, providing direct and indirect services to patients with complex palliative care needs and to their families. Existing literature shows a developing understanding of the role; however, little detailed data exist regarding the clinical work that they undertake. This paper provides evidence from a major evaluation study, commissioned by Macmillan Cancer Relief. It reports the methods of data collection for the study and then goes on to use data from the evaluation to describe the caseload of Macmillan Nurses. Between September 1998 and October 1999, a team of researchers worked alongside 12 Macmillan teams for a period of 8 weeks with each team. Prospective data were gathered on all new referrals to the services within the 8-week period. This included demographic details, timing of referral, the nature and purpose of contacts, and interventions, recorded from case notes and Macmillan Nurse records. Where possible, a date of death was obtained for all patients. A total of 814 new patients were referred during the study period (range 45– 114 per site). The most common reasons for referral were emotional care for the patient (57%), pain control (27%), and other physical symptoms (33%). Thirteen per cent of the patients referred to the services died within 1 week of referral while 40% died within 6 weeks; thus, a significant proportion of patient work is focused on care at the end of life. It is also noteworthy that one-third of patients were still alive, indicating that some patients are being cared for earlier in the illness trajectory. On average, each new patient referral received two or more ‘face-to-face’ visits and two follow-up phone calls within the 8-week period. It would appear that Macmillan Nurse teams have been successful in getting access to relevant patients. As with any service that provides a complex set of interventions, the Macmillan teams have to adapt and develop the services in each setting. Whilst it is clearly important for the development of a Macmillan service to be tailored to the local conditions, the evidence on diversity suggests that in some cases, stronger guidance, in partnership with both Macmillan Cancer Relief and core providers, may be justified.

Clinical nurse specialists in palliative care. Part 3. Issues for the Macmillan Nurse role.

The remit and boundaries of the Macmillan Nursing role in the UK have been called into question recently by a number of policy-driven changes. The rapid appointment of tumour site-specific nurses and the development of posts for palliative medicine, stemming originally from the Calman Hine recommendations for reorganizing cancer services, have created unparalleled challenges of adaptation to new working practices and procedures. The extent to which Macmillan Nurses are adapting to these new demands was addressed as part of a major evaluation study of UK Macmillan Nursing in 12 sites commissioned by the UK charity Macmillan Cancer Relief. This paper draws upon semi-structured interviews with Macmillan Nurses (n = 44) and their key colleagues (n = 47). We found that differences of expectation between Macmillan Nurses and their managers about the appropriate focus of their work lead to problems of role ambiguity and role conflict; that Macmillan Nurses lack resources with which to develop an educative and consultative role and yet substitute for inadequacies in skills and knowledge of other health care staff; and that problems are associated in co-working with newly appointed cancer site-specific nurses and palliative medicine colleagues. Macmillan Nursing has a crucial role to play in meeting the objectives in the NHS Cancer Plan. However, in order to ensure that their expertise is used efficiently and effectively, there is an urgent need to clarify the nature and scope of the Macmillan Nurse role, to attend to issues of team working and to improve the skills of nonspecialist staff in palliative care.

An exploration of family carers’ experience of respite services in one specialist palliative care unit

Background: Changing patterns of care for terminally ill people mean that 90% of patients in the UK now spend the majority of their last year of life at home. It is now widely accepted that supporting individuals to die at home relies heavily on the availability of family carers to provide the majority of the care needed. However, one of the most common reasons for unplanned admissions near the end of life is carers’ inability to provide continuing care. One strategy to overcome these challenges has been to offer planned respite care. Despite recent studies, in reality little is known about respite services for patients with life limiting illness, in particular how respite is experienced by the caregivers or to what extent respite services address their needs. Methods: This prospective study, comprising mixed methods of data collection, explored the experiences of 25 family carers whose relative had been admitted to the local hospice for inpatient respite care. Semi-structured interviews were conducted at two time points: pre- and post-respite. The Relative Stress Scale Inventory was administered at both interviews. Results: Just over half of the sample were caring for a relative with a diagnosis of cancer (n = 13); the majority of the others had a number of neurological conditions (n = 12). The data demonstrate that managing care for relatives with a life limiting illness was perceived to be hard work, both physically and mentally. Inpatient respite care was considered important as it enabled family carers to have a break from the ongoing care-giving responsibilities, as well as being an opportunity to experience ‘normal life’ independently. The majority of family carers felt that their expectations of respite for themselves had been achieved. The respite service was well evaluated in relation to: standard of nursing care; alternative facilities on offer, atmosphere; and other care homes. Discussion: Currently, inpatient respite services are provided to two patient groups - those in the last year of life and those with a chronic life limiting illness. However, on closer analysis, the current model of service delivery, a two-week inpatient stay, may not be best suited to those caring for a relative in the last year of life. Similarly, it might be questioned whether an inpatient hospice is the most suitable setting for those patients needing supportive care, rather than specialist palliative care. The study has raised many issues that need to be considered in the support of carers caring for relatives with a life limiting illness with uncertain trajectories.

Clinical nurse specialists in palliative care. Part 2. Explaining diversity in the organization and costs of Macmillan nursing services.

In the UK, the work of Macmillan clinical nurse specialists in palliative care is now well established. There has been little research, however, into the organizational context in which these nurses operate and the implications for the services they deliver. We report on a major evaluation of the service delivery, costs, and outcomes of Macmillan nursing services in hospital and community settings. The study was based on eight weeks of fieldwork in each of 12 selected services. Data are presented from semi-structured interviews, clinical records, and cost analysis. We demonstrate wide variation across several dimensions: location and context of the services; activity levels; management patterns; work organization and content; links with other colleagues; and resource use. We suggest that such variation is likely to indicate the existence of both excellent practice and suboptimal practice. In particular, our study highlights problems in how teamwork is conceptualized and delivered. We draw on recent organizational theories to make sense of the heterogeneous nature of Macmillan nursing services.

Ethical and methodological issues in palliative care studies: The experiences of a research group

This paper reports on the experiences of a nursing-led research group, ‘The Palliative and End of Life Care Research Group’, within the School of Nursing and Midwifery at the University of Sheffield. There is a long tradition of research in palliative care in which nurses have played an important role and currently opportunities to conduct research in palliative care are expanding. Nurses face a number of ethical and methodological challenges in conducting palliative care research, many of which extend beyond individual research conduct. Drawing on practical examples in each case, this paper explores the following themes: issues involved in raising participation and recruitment to studies of palliative care; how the topics of palliative and end-of-life care are introduced and explored with participants; what ‘special’ needs participants have in palliative care research; interpersonal issues in conducting palliative care research; and providing support and supervision to researchers.

Nursing care for people dying from chronic obstructive airways disease

Nursing has demonstrated its ability to respond to the palliative care needs of patients, and their families, with advanced cancer. One of the current challenges to palliative care nursing lies in meeting the needs of patients with a diagnosis other than cancer. This paper reports on how nursing is currently organised and delivered to those individuals dying from chronic obstructive airways disease (COAD). The study findings illustrate a group of people whose quality of life is perceived to be poor, and whose health burden is considerable. Currently, nursing knowledge, skills and expertise are being under-utilised within the care of this patient group, and this requires urgent attention by purchasers and providers.

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.

Death cafés: a place where students can talk too

BELARUS Anna Garcakova Director of the Belarusian Children’s Hospice BELGIUM Tine De Vlieger General Coordinator, Palliatieve Hulpverlening Antwerpen, University of Antwerp EIRE Philip Larkin Professor of Clinical Nursing (Palliative Care), School of Nursing, Midwifery and Health Systems and Our Lady’s Hospice Ltd, Health Sciences Centre, University College Dublin, Ireland Julie Ling CEO of the European Association for Palliative Care, Our Lady’s Hospice, Dublin

Making sense of frailty: An ethnographic study of the experience of older people living with complex health problems

Aim To explore how older people with complex health problems experience frailty in their daily lives. Background A better understanding of the personal experience of frailty in the context of fluctuating ill‐health has the potential to contribute to the development of personalised approaches to care planning and delivery. Design An ethnographic study of older people, living at home, receiving support from a community matron service in a large city in the North of England. Methods Up to six care encounters with each of ten older people, and their community matron, were observed at monthly intervals, over a period of time ranging from 4 to 11 months. Semi‐structured interviews were conducted with the older participants in their own homes. Fieldwork took place over a 4‐year period. Data analysis was undertaken using the constant comparative method. Findings The experience of frailty was understood through the construction of four themes: Fluctuating ill‐health and the disruption of daily living; Changes to the management of daily living; Frailty as fear, anxiety and uncertainty; Making sense of changes to health and daily living. Conclusions Older people work hard to shape and maintain daily routines in the context of complicated and enduring transitions in health and illness. However, they experience episodic moments of frailty, often articulated as uncertainty, where daily living becomes precarious and their resilience is threatened. Developing an understanding of the personal experiences of frail older people in the context of transition has the potential to inform nursing practice in person‐centred care . Implications for practice Nurses need to support frail older people to maintain independence and continuity of personhood in the context of daily routines.