Philippa Hughes

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.

What progress has been made towards implementing national guidance on end of life care? A national survey of UK general practices:

The objectives of this study were to establish the extent to which UK primary care has adopted recommended practices on supportive and palliative care of adults with cancer, and to relate this to participation in national initiatives. We conducted a cross-sectional postal questionnaire survey of a random sample of UK general practices. In total, 60.0% of practices (2096 of 3495) responded to the survey: 61.5% reported involvement with the Gold Standards Framework (GSF); 24.4% with the Liverpool or other End of Life Care Pathway; 12.3%, with the Preferred Place of Care (PPC) initiative; and 8.4% with Advance Care Planning (ACP). Participation in GSF contributed most to the variance in practice organization scores; and practice organization scores contributed most to the variance in clinical care scores. Participation in ACP or PPC, and higher clinical care scores were associated with an increased likelihood of reported high rates of death at home for cancer patients. Our findings appear to support the role of national initiatives in improving the quality of end-of-life care delivery in general practice. A population-based study would be required to assess the effect of end of life care on clinical outcomes and patient or carer experience.

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.

Attitudes of Health Care Professionals to Opioid Prescribing in End-of-Life Care: A Qualitative Focus Group Study

CONTEXT Opioid therapy is central to the management of pain in the field of generalist palliative and end-of-life care, and international guidelines highlight the need for opioids to be used as part of a comprehensive strategy to treat pain. However, evidence suggests that the use of opioids in palliative care is suboptimal, and many patients do not receive adequate pain control at the end of life. OBJECTIVES This study aimed to explore the attitudes of health care professionals to opioid prescribing in generalist end-of-life care. METHODS Thirty-one health and allied health professionals participated in four focus groups. Two focus groups took place in general practitioner practices and two in hospices. RESULTS Findings revealed that significant barriers exist to the appropriate use of opioids in end-of-life care. Particular barriers exist for professionals working in primary care and include concerns about giving high doses and having insufficient training in opioid use. Working partnerships between specialist and generalist palliative care providers are important for increasing generalist confidence in prescribing. Patients and their families often have concerns about initiating opioids, and specialist nursing staff are crucial to managing and alleviating these concerns. CONCLUSION Significant barriers exist to the appropriate use of opioids in end-of-life care. If international priorities on improving pain management at the end of life are to be achieved, educational opportunities for generalists need to be enhanced, and effective interprofessional working models need to be developed so that pain management for patients at the end of life is optimized.

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.

Evaluation of a scheme to enhance palliative cancer care in rural Wales

Since the early 1990s, the United Kingdom has seen several initiatives designed to improve the quality of cancer palliative care in the community. We report on the evaluation of a project that took place in the rural county of Powys in Wales in which a group of general practitioner clinical facilitators (GPCFs) sought to raise the overall standard of palliative care among primary health care teams (PHCTs). The evaluation was conducted over 3 years and made use of several methods: interviews with facilitators and other key stakeholders at regular intervals throughout the project; a survey of PHCT members at two time points; an analysis of patterns of opioid prescribing in the county before and during the project; monitoring of referrals to specialist palliative care services out of county; and an analysis of place of death of those dying from cancer. The evaluation found that local general practitioners (GPs) were willing to work as facilitators and that they made contact with over two thirds of those in the PHCTs. Facilitators undertook a variety of clinical, educational and service development initiatives but did report on problems of role definition and time management. There were no marked changes in patterns of referral to specialist palliative care or in place of death, but there was some evidence to suggest that the facilitators had an influence on their colleagues’ opioid prescribing patterns.

Consumer views on a new holistic screening tool for supportive and palliative-care needs: Sheffield Profile for Assessment and Referral for Care (SPARC): a survey of self-help support groups in health care

Sheffield Profile for Assessment and Referral for Care (SPARC) was developed in response to concerns that palliative care may not be reaching all people who could benefit from it. Acceptability of the tool is an important step in developing its future use.

Views and experiences of using integrated care pathways (ICPs) for caring for people in the last days to hours of life: results from a cross-sectional survey of UK professionals

Objectives To determine the views and experiences of health and social care professionals on using integrated care pathways (ICPs)for caring for people in the last days to hours of life. Methods Online cross-sectional questionnaire survey of UK professionals working in UK primary and secondary care settings. Results 1331 professionals returned completed questionnaires. Ninety-three per cent (1138/1228) of respondents used the Liverpool Care Pathway (LCP) or local variant. Eighty-eight (1089/1234) felt ICPs enabled professionals to provide better care for individuals and their families/carers. ICPs were viewed as promoting patient-centred holistic care, improving pain and symptom control, providing guidance and standards and improving communication with patients/families. Sixty-two per cent (770/1234) had no concerns regarding the use of ICPs. Areas of concern included incorrect use and implementation of the ICP, poor communication with families, junior level staff making decisions and insufficient education and support. Conclusions There was strong support for using ICPs for caring for people in the last days to hours of life. ICPs were viewed as supporting high-quality patient-centred holistic care. Given the recommendations of the More Care Less Pathway report, those that develop the guidance and support that replace the LCP need to incorporate the aspects of this that have resulted in the benefits seen by professionals within this survey, but also learn from the instances where ICPs have failed to prevent poor care, or worse, have contributed to it.

Implementation of a metastatic malignancy of unknown primary origin service led by a palliative physician

ABSTRACT Background: Cancer of unknown primary is the fourth most common cause of cancer death in the United Kingdom. National guidance in 2010 recommended the establishment of a dedicated unknown primary team to facilitate targeted investigation and symptom control. A service development project was undertaken to identify those affected by malignancy of unknown origin and institute a pathway for coordinating their care led by a palliative physician. Method: In order to describe the patient population and illness trajectory and to assess the effect of the new pathway on the clinical outcomes we used a retrospective and prospective comparative case notes survey to identify the pre- and post-pathway population. This took place in secondary care. Inclusion criteria were patients with metastatic disease with no known primary; exclusion criteria were where the site of metastasis was so suggestive of a primary that it would be managed as per that disease process. 88 patients were included.Results: Mean age was 72.5 years. The mean survival time from presentation was 81.8 days. There was no difference pre or during pathway implementation in age, performance status or survival time. There was no reduction in the numbers referred for tumour directed therapy. There was a non-statistically significant reduction in the number who died in hospital during the pathway implementation. Conclusions: This study suggests having a metastatic malignancy of unknown primary origin service led by a palliative physician does not reduce the number referred for tumour directed therapy. It also adds evidence of the poor prognosis and thus the need for early palliative care input.

Information management and quality of palliative care in general practices: Secondary analysis of a UK study

Palliative care seeks to improve quality of life for patients with terminal, chronic or life-long, illnesses. In the UK, most palliative care occurs in primary care, for example, through general practices. A recent national UK survey of palliative care within general practices concluded that practices that utilized recognized initiatives to promote palliative care demonstrated better clinical care and higher perceived quality of palliative care. This paper reports on secondary analyses from that survey to investigate the management of information related to palliative care within practices. Relatively high levels of information provision to families and carers were reported, over two-thirds of practices reported having unified records for palliative care patients and over 90% of practices reported having a cancer/palliative care register that was fully or mostly operational. Larger practices, those using the Gold Standards Framework and practices using unified record keeping for palliative care, were independently more likely to give information to families and carers and were more likely to have a mostly or fully operational palliative care register. When testing for the relationship between measures of the structures and processes of information management and the perceived quality of care, as an outcome, within the practices, practices with a fully operational palliative care register and practices that had higher scores on the record-keeping scale were more likely to rate the quality of their palliative care as very good.