Hannah-Rose Douglas

Do hospital-based palliative teams improve care for patients or families at the end of life?

To determine whether hospital-based palliative care teams improve the process or outcomes of care for patients and families at the end of life, a systematic literature review was performed employing a qualitative meta-synthesis and quantitative meta-analysis. Ten databases were searched. This was augmented by hand searching specific journals, contacting authors, and examining the reference lists of all papers retrieved. Studies were included if they evaluated palliative care teams working in hospitals. Data were extracted by two independent reviewers. Studies were graded using two independent hierarchies of evidence. A Signal score was used to assess the relevance of publications. Two analyses were conducted. In a qualitative meta-synthesis data were extracted into standardized tables to compare relevant features and findings. In quantitative meta-analysis we calculated the effect size of each outcome (dividing the estimated mean difference or difference in proportions by the samples standard deviation). Nine studies specifically examined the intervention of a hospital-based palliative care team or studies. A further four studies considered interventions that included a component of a hospital or support team, although the total intervention was broader. The nature of the interventions varied. The studies were usually in large teaching hospitals, in cities, and mainly in the United Kingdom. Outcomes considered symptoms, quality of life, time in hospital, total length of time in palliative care, or professional changes, such as prescribing practices. Only one of the studies was a randomized controlled trial and this considered a hospital team as part of other services. Most method scores indicated limited research quality. Comparison groups were subject to bias and the analyses were not adjusted for confounding variables. In addition, there were problems of attrition and small sample sizes. Nevertheless, all studies indicated a small positive effect of the hospital team, except for one study in Italy, which documented deterioration in patient symptoms. The Signal scores indicated that the studies were relevant. No study compared different models of hospital team. This review suggests that hospital-based palliative care teams offer some benefits, although this finding should be interpreted with caution. The study designs need to be improved and different models of providing support at the end of life in hospital need comparison. Standardized outcome measures should be used in such research and in practice.

Effectiveness of Palliative Day Care in Improving Pain, Symptom Control, and Quality of Life

To evaluate the effectiveness of palliative day care in improving pain, symptom control, and quality of life (QOL), 120 consecutive new referrals to five specialist palliative day care centers were recruited into a prospective comparative study. Fifty-three comparison patients were identified as those patients receiving usual palliative care services (home care, inpatient care), but did not attend day care. Patients were assessed at 3 interviews (baseline, 6-8 weeks, and 12-15 weeks) using measures of health-related quality of life: McGill Quality of Life Questionnaire (MQOL) and Palliative Care Outcome Scale (POS). There were two main analyses: 1) patient demographic data were analyzed using chi-square (chi(2)), and 2) QOL data were compared, based on distribution of scores, using the Mann-Whitney test (MQOL and POS), and Wilcoxon Signed Rank for within group differences (POS data only); P < 0.05 was taken as significant. The patients were representative of those attending palliative day care in the UK. At baseline, the day care group were (non-significantly) worse than the comparison group in the MQOL support domain (P = 0.065). The comparison group had marginally more severe pain at baseline (P = 0.053) and more severe symptoms at second assessment (P = 0.025). Both patient groups maintained overall health-related quality of life during the three months of the study. Palliative day care was not found to improve overall health-related quality of life. The limitations of the QOL measures in identifying the effects (patient outcomes) of palliative day care and the differences between the two patient groups (age, employment, unequal sample sizes) were limitations of the study and indicate the need for further research in this area.

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.

Efficiency of Searching the Grey Literature in Palliative Care

A systematic review into palliative care team effectiveness was undertaken which has, inherent in its methodology, grey literature searching. Over 100 letters were written to a systematically chosen range of service providers, commissioners, and experts in combination with requests for information in six UK national cancer/palliative care organization newsletters. In addition, the System for Information on Grey Literature (SIGLE ) database was searched. As a result, 25 document hard copies were received. The documents were, in all but one case (this one study was also highlighted by the SIGLE search), not relevant as they were predominated by annual reports, service descriptions, and needs assessments. In terms of obtaining unpublished studies for possible inclusion in the review, this comprehensive search was unsuccessful and, therefore, it would appear that grey literature searching is not a useful tool in palliative care systematic reviews.

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.