Palliative care services in England: a survey of district nurses' views

Good access to health and social services is essential to enable palliative care patients to remain and die at home. This article reports on a survey of perceptions of availability of such services by district nursing teams (651 respondents) across eight cancer networks in England. Only just over half of respondents thought GP home visits and specialist palliative care assessment were always available. Many district nurses reported, at best, only sometimes being able to access inpatient palliative care beds, respite care, Marie Curie/night sitting services or social work assessment. Wide variation in access to all services was reported between cancer networks. Equitable provision of services is essential if more patients are to be cared for and die at home, but our results indicate considerable room for improvement. Primary care trusts, cancer networks and strategic health authorities must work together to ensure minimum standards of access nationally if the recommendations of the NICE guidance on supportive and palliative care are to be achieved.     

Developing an educational programme in paediatric palliative care

Paediatric palliative care has increasingly been recognised as a specialist area of practice. Essentially it is a holistic approach to care that embraces a range of elements concerned with not only the management of symptoms but also the psychosocial and spiritual needs of the child and family through death and bereavement. Children requiring palliative care represent a diverse patient group whose illness trajectories are often prolonged and unpredictable and this creates much stress for children themselves, their families and professionals who support them (Price and McFarlane, 2006). Such an approach to care is unique and the development of paediatric palliative care educational programmes requires careful and thorough planning, with the specific needs of the child and family being pivotal to the process. This article recounts the development of the first paediatric palliative care programme in Ireland using the curricular cycle described by Peyton (1998).     

Holistic assessment of cancer patients' pain: reflections on current practice

This article explores the holistic assessment and management of pain for palliative care patients through the use of a case study. Using literature searching and reflection on current local practice, issues within pain assessment and management for cancer patients are identified. These issues include communication, opioid misconceptions, disease progression associated with increased pain, and the need to address all components of cancer patients' total pain. Reflection on practice has highlighted that education, effective communication and multidisciplinary collaboration, and adaptation of an existing assessment tool to develop a multidimensional holistic approach to assessing pain, have the potential to improve quality of life for palliative care patients and their families.     

Extended independent nurse prescribing in palliative care

Extended nurse prescribing is now a reality and its particular application to specialist palliative care nurses will allow them to formalize their practice of advising doctors on medication régimes and to work more autonomously. An education programme in a validated university is now operating for nurses who wish to become extended formulary nurse prescribers. Extended nurse prescribing for palliative care nurses in the community will be a particular challenge because of the large geographical areas covered, which could make communication with primary care team members difficult. If patients are to receive holistic, seamless care, palliative care nurses need to lobby for an improved, workable formulary.     

Caring for a patient newly diagnosed with COPD: a reflective account

In this article I reflect on my role as a respiratory nurse specialist caring for a patient newly diagnosed with chronic obstructive pulmonary disease (COPD). The aim of the article is to demonstrate the importance of specialist and holistic care for patients with COPD, as well as highlighting the need to carry out a thorough assessment to ensure that an accurate diagnosis is obtained and an appropriate plan of care is initiated. A model of reflection is used to promote self-awareness and provide a framework for reflection.     

Is there a need for weekend face-to-face inpatient assessments by hospital specialist palliative care services? Evaluation of an out-of-hours service

There is an increasing demand for hospital specialist palliative care services to be made more accessible outside of normal working hours. However, it has been argued that extended service provision could be misused and that specialist telephone advisory services are an adequate response to this demand. A 'routine' Saturday face-to-face visiting service was introduced into a hospital palliative care team and the service was evaluated to determine whether it was being utilised appropriately. A retrospective notes review of out-of-hours assessments was undertaken. Anonymised data relating to the nature of the interaction with the palliative care team and the outcome of the consultation were entered into an electronic database. A random sample of routine weekday interactions was also evaluated. A total of 336 Saturday and 93 weekday assessments were analysed. Most of the Saturday assessments resulted in a significant change in management (57%) or were undertaken on patients close to death (10%). There were 39/336 (12%) new referrals assessed on Saturdays. There were few differences between the nature of the Saturday and the weekday service and no evidence of 'inappropriate' referrals. We found clear evidence of the need for a specialist out-of-hours face-to-face inpatient visiting service for hospital palliative care.     

How and why do GPs use specialist palliative care services?

This study presents findings on the interaction of generalists and specialists within palliative care. General practitioners (GPs) are central to community palliative care as most of the last year of a patient's life is spent at home under the care of the primary health care team. GPs see few palliative care patients each year, however, and access to specialist palliative care services for support, advice and referral can be important particularly to support patients who wish to die at home. The aim of this study was to explore GP use of and attitudes towards specialist palliative care services through semi-structured interviews in inner city, urban and rural areas. It was part of a longitudinal evaluation of an educational intervention, and the quantitative components are reported elsewhere. Sixty-three GPs were interviewed, having been sampled randomly from inner city, urban and rural health authority district lists. While most interviewees reported using specialist palliative care services as a resource, other models of use included working together as an extended team, seldom using such services and handing over care or responsibility entirely. Availability of services clearly shaped use, but previous experience and expectations of easy access were also important. Patterns of use were not necessarily fixed, but dependent also on the differing needs of and wishes of patients and carers. Specialist palliative care services need to be aware of such variations in ways of working and to consider the implications for the capacity and flexibility of both primary care and specialist service provision.     

A patient and carer survey in a community clinical nurse specialist service

The community clinical nurse specialist (CNS) team provides specialist palliative care to clients with cancer and non-malignant, life-limiting diseases in clients' homes, community hospitals, and residential and nursing homes. CNSs are based in health centres, community hospitals (geographically spread around the county) or at the local hospice. There has been no systematic review of patient and carer levels of satisfaction since the conception of the CNS service in 1984. Accredited as a nursing development unit (Flint and Wright, 2001) by Leeds University, the team has been encouraged to obtain service users' views. National guidelines in the UK (National Institute for Health and Clinical Excellence (NICE), 2004) also recommend that systems be put in place to enable clients to make their voices heard in a variety of ways. The principle aim was to identify the level of patient and carer satisfaction and to highlight aspects of care that warranted alteration or improvement. The CNS team were also keen to identify the aspects of their role most helpful to patients and carers, enabling CNSs to spend their time in a way that is most beneficial to clients.     

Improving service delivery for relapse management in multiple sclerosis

This action research study was conducted over an 18 month period within a district general hospital. The study has improved the quality of the service provided to people experiencing a relapse of multiple sclerosis. The authors now identify and treat a three-fold increase in relapse patients. At least 85% of these patients are treated within 10 days of reporting symptoms to a specialist nurse. Before the study, only 12% of patients received treatment within this time. The authors' data identify what patients valued about this service and also inform debate around distress associated with relapse and how services should develop to respond to this. The study is of particular importance to the UK because the National Institute for Clinical Excellence (NICE) has published guidance to the NHS about the management of this specific patient group (NICE, 2003). This study also clearly demonstrates how specialist nursing services can combine a substantial clinical role with instigating and managing change in service delivery that results in improvements in patient care.     

Evaluation of a hospice based reflexology service: a qualitative audit of patient perceptions.

Complementary therapies are being increasingly used in palliative care in the drive to improve patients' emotional, psychological and spiritual health, and enhance the quality of their lives. The importance of seeking the 'user' perspective when evaluating such services is becoming increasingly acknowledged. However, it is also extremely important that we elicit such perspectives in an ethically sensitive manner. This study used a simple semi-structured questionnaire to elicit the views of a convenience sample of 34 patients receiving palliative care at a specialist palliative core unit in the north of England who had completed a course of 4-6 sessions of reflexology. Patients' comments about the therapy and the service as a whole were overwhelmingly positive. They identified relaxation, relief from tension and anxiety, feelings of comfort and improved well-being as beneficial effects of their course of reflexology. Patients also spontaneously evaluated the experience holistically in terms of the wider therapeutic environment--the centre, the staff and the therapist as well as the therapy itself. The increasing demand for evidence based practice now challenges researchers to provide a relevant holistic assessment of complementary therapies using approaches that are both ethical and sensitive to the needs of this vulnerable patient population.     

Interprofessional working: communication, collaboration... perspiration!

Palliative care is rarely delivered by one provider; for most patients their care will be managed by community and one or more hospital teams at the least. This can be problematic for patients, their family and friends, and health professionals. Evidence suggests that, in general, providers work in isolation from each other. Although formal processes are in place for transfer of information between the sectors on discharge between acute and community sectors, there is a de facto lack of communication and therefore a lack of appreciation of the working practices within each environment. This resulting lack of collaboration between teams can lead to disruptive care that detracts from the holistic philosophy purported to be the basis of supportive and palliative care (National Institute for Health and Clinical Excellence (NICE) 2004; Department of Health (DH) 2000). In October 2005, 20% of a clinical nurse specialist's (CNS) full-time post was dedicated to working between the palliative care teams of Central Manchester and Manchester Children's NHS Trust (CMMC) and Central Manchester PCT (CMPCT). The aim was to improve communication and dialogue to promote more effective integrated working between the two sites and develop effective interprofessional working. This article will evaluate the impact of this new post, after 18 months, on collaboration between the teams, their practices and their patients. Finally, it will offer recommendations for future development.     

Hospital based palliative care teams improve the symptoms of cancer patients

Despite the increase in hospital palliative care teams, there is little research into their impact on symptom control in patients. A nonequivalent control group design, using a quota sample, investigated 100 cancer patients who had been admitted to hospital for symptom control. Fifty patients received hospital palliative care team intervention compared with 50 patients receiving traditional care. Data was collected using the Palliative Care Assessment (PACA) symptom assessment tool on three occasions. Both groups showed a statistically significant improvement in their symptoms. This significance failed to meet the criterion of one point on a four point scale and therefore results have to be interpreted with caution. However the intervention group had a greater improvement in all their symptoms, particularly for the pain and anorexia for which there were no differences between the groups on the initial assessment, there was a statistically greater improvement for the intervention group (P < 0.001). Consecutive patients with cancer admitted to hospital for symptom control during this study improved, but those patients who received specialist palliative care had a significantly greater improvement in their symptoms.     

The experience of transition to palliative care services: perspectives of patients and nurses

The care of patients whose illnesses cannot be cured places many stresses on health professionals (both generalist and specialist), and more importantly on patients and families. The complexities for all concerned in the process of referral to palliative care services should not be underestimated, however there is evidence that the referral process could be better handled by all health professionals. With greater understanding of the dynamics of care, the crisis of living with an incurable illness and dying can be lessened for patients. This article reports on a qualitative research project undertaken at a large metropolitan palliative care service and its referring public hospital. Patients and nurses were interviewed to identify issues relating to the care of patients and families newly referred to palliative care. The findings of this research identify themes in relation to the transition of patients from acute curative to palliative care services, e.g. pace and timing of the transition, fear and (mis)understanding, accepting palliative care, information and education on palliative care, and peer support and supervision for palliative care nurses.     

Improving delirium recognition and assessment for people receiving inpatient palliative care: a mixed methods meta-synthesis

BackgroundDelirium is a serious acute neurocognitive condition frequently occurring for hospitalized patients, including those receiving care in specialist palliative care units. There are many delirium evidence-practice gaps in palliative care, including that the condition is under-recognized and challenging to assess.ObjectivesTo report the meta-synthesis of a research project investigating delirium epidemiology, systems and nursing practice in palliative care units.MethodsThe Delirium in Palliative Care (DePAC) project was a two-phase sequential transformative mixed methods design with knowledge translation as the theoretical framework. The project answered five different research questions about delirium epidemiology, systems of care and nursing practice in palliative care units. Data integration and metasynthesis occurred at project conclusion.ResultsThere was a moderate to high rate of delirium occurrence in palliative care unit populations; and palliative care nurses had unmet delirium knowledge needs and worked within systems and team processes that were inadequate for delirium recognition and assessment. The meta-inference of the DePAC project was that a widely-held but paradoxical view that palliative care and dying patients are different from the wider hospital population has separated them from the overall generation of delirium evidence, and contributed to the extent of practice deficiencies in palliative care units.ConclusionImproving palliative care nurses' capabilities to recognize and assess delirium will require action at the patient and family, nurse, team and system levels. A broader, hospital-wide perspective would accelerate implementation of evidence-based delirium care for people receiving palliative care, both in specialist units, and the wider hospital setting.     

Discharge planning in rehabilitation following surgery for a stoma

Discharge planning and establishing goals for rehabilitation after stoma surgery is an ongoing process, which should be preceded by an holistic assessment, ideally carried out by a specialist practitioner with knowledge and experience in this area. The practitioner needs to have effective listening skills to ensure that both practical and psychological care are patient-centred. The patient and his/her carers must be involved in all aspects of care planning and establishing goals for rehabilitation. The specialist practitioner should adopt an evidence-based approach to care, ensuring that important aspects of care, such as the early teaching of stoma management skills, are not neglected. The specialist practitioner may not be able to meet all the patient's needs and should refer on to other specialist staff where these services are available. Such multidisciplinary input, utilizing appropriate problem-solving approaches with the involvement of patients and their carers, can only enhance the quality of care delivered and optimize the process of rehabilitation.     

Specialist palliative care in nonmalignant disease

The objective of this study was to investigate how many patients who die from causes other than cancer might benefit from specialist palliative care. This was achieved by secondary analysis of data from the Regional Study of Care for the Dying, a retrospective national population-based interview survey. The investigation involved 20 self-selected English health districts, nationally representative in terms of social deprivation and most aspects of health services provision. A total of 3696 patients were randomly selected from death registrations in the last quarter of 1990; an interview concerning the patient was completed 10 months after the death by bereaved family, friends or officials. The results show that a third (243/720) of cancer patients who were admitted to hospices or had domiciliary palliative care scored at or above the median on three measures of reported symptom experience in the last year of life. That is the number of symptoms (eight or more), the number of distressing symptoms (three or more) and the number of symptoms lasting more than six months (three or more). A total of 269 out of 1605 noncancer patients (16.8%) fulfilled these criteria. On this basis, it is estimated that 71,744 people who die from nonmalignant disease in England and Wales each year may require specialist palliative care. An increase of at least 79% in caseload would, therefore, be expected if specialist palliative care services were made fully available to noncancer patients. This is a conservative estimate, as non-cancer patients were matched to only one-third of cancer patients who had specialist palliative care. It is concluded that clinicians and patient groups caring for patients with advanced nonmalignant disease must work together with specialist palliative care services and with health commissioners to develop, fund and evaluate appropriate, cost-effective services which meet patient and family needs for symptom control and psychosocial support.     

Caring for families with a family history of cancer: why concerns about genetic predisposition are missing from the palliative agenda

Care of the family is integral to palliative care, but little attention has been paid to the way nurses, or other healthcare professionals, are responding to the needs of families who are concerned about whether their family history of cancer is associated with an inherited genetic predisposition. This paper discusses how palliative care nurses perceive the care needs of patients with a family history of cancer. Data were collected through recorded, semi-structured interviews with 10 nurses who had worked in specialist palliative care. The findings show that there are cogent arguments and concerns about raising the issue of an inherited genetic predisposition at the end of life (especially when the patient is close to death and there is a lack of knowledge about genetics). Nevertheless, exemplar cases are used to illustrate the reasons why it is important that nurses working in specialist palliative care settings are aware of the needs of this patient group. The paper highlights that nurses not only need an appropriate knowledge base but also an insight of what can be achieved when supporting patients with a family history of cancer.     

The specialist palliative care team in Forlì, Italy

 A specialist palliative care team (SPCT) for the care of terminal cancer patients was established at Forlì in 1986. Over the years, its staff and the patients cared for have been increasing in numbers up to the present levels of importance. For 12 years the service was supplied by a private institution, Istituto Oncologico Romagnolo (IOR). The National Health Service (NHS) has since stepped in and is now supplying home care directly, leaving the IOR with a cultural, supporting, role and with the promotion of volunteer recruitment. The care provided by the specialist group active in the patients' homes is integrated into the primary care provided by the family doctors. A plan is being realized to establish a palliative care unit (PCU) within the city hospital. The group has also been engaged in research for many years, giving special attention both to prognostic factors in very advanced cancer patients and to the organization and evaluation of the service costs. Moreover, two training courses in palliative care are organized biennially, one for all health workers in the region and one for volunteers co-operating with the medical teams. Published online: 3 August