Meeting the communication and information needs of chronic heart failure patients

There is a lack of evidence on how best to meet policy guidance in fulfilling the information needs of patients with chronic heart failure (CHF) and their families. We aimed to generate guidance for appropriate information provision to CHF patients and their families through a cross-sectional qualitative methodology with constant comparison of emergent themes. Participants were 20 CHF patients (New York Heart Association Functional Classification III, III–IV, and IV); 11 family carers; six palliative care staff; and six cardiology staff. Patients and carers severely lacked understanding of CHF and its symptoms. None had discussed disease progression or advanced care planning with staff. Although patients expected honest discussion of disease implications, data from clinicians described an unwillingness to disclose poor prognosis. We identified four types of barriers to the discussion of disease progression: disease-specific; patient-specific; specialism-specific; and staff time and resources. This is the first study to integrate cardiology, palliative care, and patient and family views to develop feasible recommendations on meeting information needs. Three recommendations for hospital-based clinical practice were generated from the data: (1) improved methods of providing information; (2) introduction of mutual education and joint working; and (3) development of care pathways and referral criteria.     

Survey of specialist palliative care and heart failure: September 2004

AIMS: To describe English specialist palliative care (SPC) services' provision for, and attitude to, heart failure patients, and to identify developments of particular interest or expertise in this area. METHOD: Postal survey of all lead consultants of English SPC services, September 2004. RESULTS: Of 397 services, 233 replied (response rate 59%); 222 (95%) thought SPC had a role in severe/end stage heart failure, while three (1%) did not. A total of 197 services (85%) accepted heart failure patients, 26 (11%) did not. The most common reasons for not accepting heart failure patients were lack of resources or beds, implications for staff training or an organizational decision. The mean number of heart failure patients currently under a service was 2.2, but 15 had more than five (maximum 53). Fifteen services (6%) had specific referral criteria for heart failure patients, including recurrent hospital admissions without symptomatic improvement, inappropriateness of further hospital admission and severity of heart failure. Twelve services (5%) had or were developing treatment guidelines for heart failure: five were end of life pathways, three covered breathlessness management and three were symptom control guidelines. Some 137 services (59%) described local collaborative initiatives between SPC, heart failure services and primary care, such as mutual education, joint working and working groups. A number of models of joint working practices were described in detail. Twenty-seven (12%) knew of national initiatives. CONCLUSIONS: The current situation of SPC services in England for patients with heart failure varies widely. One in 10 SPC services in this audit did not accept heart failure patients. Few have developed services of significant size. Local collaborative initiatives are common. Specific referral criteria and symptom control guidelines have been developed. Their role in promoting good palliative care in patients with heart failure remains unclear. Better dissemination of practical knowledge gained by these initiatives could significantly improve the provision of SPC services to heart failure patients.     

Improving palliative care provision for patients with heart failure

In the last 14 years, research has identified that patients with heart failure suffer symptoms as severe as people with cancer and would greatly benefit from a palliative care approach. In spite of this fact, it is recognized within the National Service Framework for Heart Failure (Department of Health (DoH), 2000b) and the Cancer Plan (DoH, 2000a) that service provision from a palliative care perspective remains inadequate. In order to address the palliative care needs for patients with heart failure and their families a multidisciplinary team approach between primary and secondary care is needed. This article will review the literature relating to improvement of services from a palliative care perspective. It discusses the quality of life experienced by patients with heart failure and their families and the barriers to providing a palliative care approach from a multidisciplinary team perspective. Finally, it attempts to present future recommendations to develop a structured service provision.     

Development of an end-of-life care pathway for patients with advanced heart failure in a community setting

Chronic heart failure affects around 750000 people per year in the UK. Despite the development of evidence-based treatments the 1-year survival rate is poorer than for many common cancers. Quality of life is poor, with breathlessness, peripheral oedema and fatigue being common symptoms. Through clinical audit a community heart failure nurse identified that the palliative care needs of patients with advanced heart failure were not being adequately addressed in his locality. A more cohesive way of managing these patients was required. Joint working between heart failure and palliative care clinicians as well as the development of an advanced heart failure shared care pathway and supporting tools resulted in patients with heart failure having improved access to palliative care, more of these patients dying in their preferred place of care, and the provision of a holistic heart failure service spanning referral to end of life. The impact of chronic heart failure on both individual patients and the NHS is considerable. With interdisciplinary and interorganisational collaboration, a new approach to managing patients with heart failure has been developed that has resulted in improved patient care.     

Survey of specialist palliative care services for noncancer patients in Ireland and perceived barriers

BACKGROUND: Specialist palliative care (SPC) services in Ireland are well developed by international standards. However, standardized information on all patients of SPC services is not collected so the proportion of patients seen with a noncancer diagnosis is just an estimate at 5%. AIMS: To describe Irish SPC services' provision for, and attitudes to noncancer patients. METHOD: Postal questionnaire of clinical managers of all SPC services listed in the directory of SPC services in Ireland, September 2005. RESULTS: Sixty-five questionnaires were returned representing a 100% response rate. Twenty four percent (n = 15) of services limited availability for noncancer patients in some way. Of those services available for noncancer patients, the type of care provided to them was the same as for cancer patients in 81% of services (n = 50). The percentage of all patients seen in 2004 who had a noncancer diagnosis was 7.21%. Only 68% (n = 42) of services had a written referral policy. The top three perceived barriers by SPC service providers were the unpredictable noncancer disease trajectory (mean intensity = 6.77), the resultant difficulties with developing referral criteria (mean intensity = 6.38) and the lack of noncancer disease specific expertise (mean intensity = 5.96). DISCUSSION: There is a mismatch between availability of palliative care services for noncancer patients and uptake. The noncancer disease trajectory continues to be considered a barrier to care. Imaginative models of care need to be developed that are not prognosis based.     

Differences in understanding of specialist palliative care amongst service providers and commissioners in South London

This paper describes a study that sought to identify service providers' and commissioners' understanding of specialist palliative care within the context of changing service provision in one area of South London. Using a formative evaluation framework, we examined the views of 44 providers and commissioners from statutory and voluntary health and social care services about their understanding of specialist palliative care services and, in particular, the remit of current service provision delivered by a Marie Curie Centre. Face-to-face audiotaped semi-structured interviews were conducted. A qualitative thematic analysis highlighted a number of issues including a lack of consensus about definitions of palliative care, ambivalence about referral procedures, and a lack of role clarity between specialist and generalist palliative care providers. The study took place within the real world context of changing services and economic pressures. This raises methodological issues about how services are evaluated and what terminology is used to describe end-of-life care. The study findings confirm that confusion about terminology and referral criteria remain major issues for clinical workers and organizations seeking to access services.     

The provision of weekend physiotherapy services in tertiary-care hospitals in Canada

Purpose: To describe the provision of weekend physiotherapy (PT) services in tertiary-care hospitals in Canada.Methods: A prospective cross-sectional survey was conducted across tertiary-care hospitals, defined as those with university affiliation and at least one intensive care unit (ICU). Data were collected via telephone-administered questionnaires addressing hospital demographics, weekend staffing, workload, and weekend referral criteria.Results: A response rate of 84% (n=36) was obtained. Of facilities providing weekend PT services (97%), 35 (100%) provided care on Saturdays, 32 (91%) on Sundays, and 33 (94%) on statutory holidays. Weekend services were staffed using permanent full-time (n=35; 100%) or part-time (n=28; 80%) in-patient staff or outsourced staff (n=1; 3%). The number of physiotherapists available on the weekend was smaller than the number available during the week (p<0.001). Common weekend referral criteria included cardiorespiratory problems (n=35; 100%), postoperative assessment of patients at risk for deterioration (n=32; 91%), and patients scheduled for discharge pending PT assessment (n=30; 86%).Conclusion: Both the scope and the number of staff available to provide PT services were less on the weekend than during the week. Despite the use of common criteria for weekend referral, variability in this service exists. Knowledge pertaining to current weekend PT services provides opportunities for harmonization of service delivery.     

A qualitative evaluation of the impact of palliative care day services: the experiences of patients, informal carers, day unit managers and volunteer staff

OBJECTIVES: To explore the experiences of people involved in UK palliative care day services (PCDS) and identify the important outcomes of this service. METHODS: Focus groups were carried out separately with patients, informal carers and volunteers from four purposively selected palliative care day units and with day unit managers from 11 units. RESULTS: Patients benefited from both the support of PCDS professionals and social support of fellow PCDS patients, which contributed to a perceived improvement in their quality of life. Carers appreciated both the respite and support from PCDS, but acknowledged that they still had a poor quality of life. The challenges facing PCDS include the difficulties of discharging patients and the future role of volunteers. DISCUSSION: PCDS improved patients' perceived quality of life and future evaluations on patient outcomes could use concepts such as self-esteem, self-worth and confidence. Future service provision could explore the possibility of a mixed service using both the traditional and appointment-based system.     

District nurses' perceptions of palliative care services: part 2

The overall aim of this study was to examine district nurses' (DNs') perceptions of palliative care services within the community setting. A questionnaire which focused on the key areas of defining palliative care, perception of roles, communication, service provision and the education and training needs of DNS was used. This was designed following a review of the literature and combined with data from phase one of the study (Vol 5(5): 215-222), which involved focus group interviews with DNs. The questionnaire was distributed to district nursing sisters (n = 66) within two community trusts in Northern Ireland. Findings suggest that the physical 'doing' aspects of care continue to dominate DNs' perceptions of palliative care and their educational needs. However, the supportive element of the DN's role was also identified alongside the potential role as coordinator. Palliative care service provision was considered adequate and the main services that nurses identified as useful related to the provision of 24-hour care. The main factors identified by nurses as influencing service provision related to organizational issues such as inadequate staffing levels, limited resources and a lack of time.     

Barriers and facilitators to the receipt of palliative care for people with dementia: The views of medical and nursing staff

Background: The global prevalence of dementia is set to rise to almost 65 million people by 2030, providing policy makers and practitioners with significant challenges, not least within the realms of end-of-life care. The international literature would suggest that people with dementia may benefit from palliative forms of care, but evidence indicates that many fail to access such provision at the end of life. The role of the health care team is pivotal if people with dementia are to benefit from the transition to palliative care. Aim: This paper reports on qualitative research conducted in the UK that sought to explore the experiences of health care practitioners working in palliative care and sought to establish the issues relating to end-of-life care for people with dementia. Design: Eight focus groups and four individual interviews were held. Data were analysed using a thematic approach. Setting/participants: The study included palliative care practitioners (n = 58) including medical, nursing and allied health professionals. Participants were recruited from acute hospitals, general practice, hospices and specialist palliative care units in the UK. Results: Four themes were identified: Making the transition; Competence challenged; 'The long view' and Working together. Whilst there exists good practice in this area, the barriers to timely and appropriate transitions to palliative care for people with dementia and their families continue to exist. The paper concludes with recommendations for policy and practice development.     

Heart failure and palliative care services working in partnership: report of a new model of care

It is widely acknowledged that people with advanced heart failure have at least as great a need for supportive and palliative care as those with malignant disease. However, specialist palliative care services are seldom involved in their care in the UK. We describe a three-year collaboration between community-based heart failure nurse specialists and existing specialist palliative care services. In the model of care that has evolved, the heart failure nurses remain key workers throughout the illness. They run a regular support group for patients and carers in the setting of a hospice day therapy unit, referring patients for other palliative care involvement as necessary. Activity data and the results of patient interviews are presented. These suggest that the model is a cost effective, sustainable way of providing high quality care for people with heart failure.     

Facilitating Needs-Based Support and Palliative Care for People With Chronic Heart Failure: Preliminary Evidence for the Acceptability,Inter-Rater Reliability,and Validity of a Needs Assessment Tool

ContextUnderstanding the types and extent of need is critical to informing needs-based care for people with chronic heart failure (CHF).ObjectivesTo explore the psychometric quality of a newly developed rapid screening measure to assess the supportive and palliative care needs of people with CHF.MethodsA convenience sample of multidisciplinary health professionals working in heart failure care was invited to comment, via an online survey and consultation, on suitability and required modifications to a validated cancer care needs assessment measure to inform the support and palliative care needs of patients with CHF and their caregivers. Psychometric testing was then undertaken with 52 patients with CHF recruited from a multidisciplinary heart failure service to explore inter-rater reliability and concurrent validity of the newly adapted Needs Assessment Tool: Progressive Disease-Heart Failure (NAT: PD-HF).ResultsHealth professionals (n = 21) rated the tool as easy to administer, comprehensive, and relevant for the CHF population. Prevalence- and bias-adjusted kappa values indicated good agreement between pairs of raters for each item in the NAT: PD-HF (range 0.54–0.90). Participants indicating a higher severity of concern in the NAT: PD-HF physical, daily living, and spiritual items reported significantly higher Heart Failure Needs Assessment Questionnaire physical and existential scores.ConclusionThis study provides preliminary evidence for the NAT: PD-HF as a potential strategy for identifying and informing the management of physical and psychosocial issues experienced by people with CHF. Further work is needed to examine additional psychometrics, benefits relating to unnecessary symptom burden, futile treatments, and admissions to hospital.     

Service implications from a comparison of the evidence on the effectiveness and a survey of provision in England and Wales of COPD specialist nurse services in the community

STUDY BACKGROUND: Chronic obstructive pulmonary disease (COPD) is the fifth leading cause of mortality worldwide and is a burden on healthcare resources. Therefore, implementing the right care model(s) for patients with COPD is a priority. Nurses, particularly those with specialist roles, are often the principal health professionals involved in new service models. NEW SERVICES: for patients in the community with COPD are increasing in many countries. Two main types of initiatives have been evaluated; those designed to transfer acute care out of hospital and into the community, and those offering chronic disease management. The extent and nature of such specialist services in the UK and internationally are unknown. OBJECTIVES: To present the results of the first survey of specialist nurse service provision for patients in the community with COPD in England and Wales. To combine the survey findings with systematic review evidence to explore to what extent provision is supported by evidence of effectiveness. METHODS: A postal survey of respiratory healthcare professionals undertaken concurrently with a review of the evidence of the effectiveness of nurse COPD services (review findings are reported fully elsewhere). RESULTS: Two hundred and thirty four specialist nurse services were identified; 71% involved chronic disease management, of which 47% also provided acute care. Seventeen per cent of services involved acute care only. The review identified evidence to support the provision of acute services but data on chronic disease management services are sparse and there is currently little evidence to support these services. Those interventions that have been evaluated to date differed from many of the services provided. CONCLUSIONS: This study identifies a considerable mismatch between existing evidence around effectiveness and services provision for patients with COPD. It clearly highlights the need for greater interaction between what happens in practice and research. This is an issue that has relevance across all healthcare practice, both nationally and internationally.     

The benefits of a hospital-based inpatient palliative care consultation service: preliminary outcome data

This report describes the multiple complementary analytic methods used to create a composite evaluation of the benefits of a hospital-based inpatient palliative care consultation service at Montefiore Medical Center in its preliminary phase. We evaluated data regarding 592 consecutive patients consulted by the palliative care service between November 2000, through March 2002. Standardized medical record reviews indicated that over 90% of interventions recommended by the palliative care team were accepted and acted on by the primary team; audit of the medical records of 368 patients confirmed that pain and other symptoms improved in 87% of patients after palliative care intervention. Ninety-five percent of respondents to a telephone survey of family caregivers described themselves as likely to recommend the service to others. High levels of referring provider satisfaction were evidenced by a Likert- scale provider satisfaction survey and an increase in the rate of referral for palliative care consultation from 2% to 21% of all patients dying at our medical center during the study period. There were also significant reductions in charges for ancillary tests and ventilator charges after palliative care consultation. A matched case control study of mechanically ventilated patients demonstrated significant savings in hospital charges (n = 160 pairs). Length of stay was significantly reduced for patients referred for hospice (n = 112). This type of multifaceted approach is necessary for the evaluation of a service with multiple components that would be difficult to capture with a single analytic approach. This report suggests efficacy of our palliative care service in terms of patient outcomes, provider satisfaction, caregiver satisfaction, and cost savings.     

Culture,palliative care and multiculturalism

The frequently asked question, 'Why do minority ethnic groups not access palliative care?' needs closer analysis. This article sets out to revisit the context and principles of palliative care and discuss why palliative care services are not accessed equally by all cultural groups in western, particularly UK, society. The conceptual basis of culture, together with cultural diversity, will be discussed to foster greater understanding of multiculturalism with a view to offering recommendations for the provision of culturally sensitive palliative care. These recommendations will seek to be challenging but realistic, both for practitioners providing such care and for educationalist disseminating 'knowledge'. I will highlight what I believe are the challenges of providing palliative care that is acceptable to minority ethnic groups based on personal experience and literature, and emphasize that these challenges should be seen as potential opportunities. It is hoped that this article will set a platform for honest and open discussion about the way forward in providing culturally sensitive palliative care for minority ethic groups. I will pose a challenging call to all members of minority ethnic groups to adopt a more proactive approach to their own care by preparing themselves to be in an influential position in palliative care provision through academic and clinical endeavours.     

Effective palliative care for minority ethnic groups: the role of a liaison worker

As the issue of equality of access to health-care services becomes more important, there is increasing concern that specialist palliative care services in the UK are under-used by minority ethnic groups (Haroon-Iqbal et al, 1995; Karim et al, 2000). Research into the provision of such services for black and minority ethnic communities identified a number of factors that contribute to a perceived low take-up of services (Hill and Penso, 1995). A strategy to promote ethnic and racial sensitivity in palliative care service delivery, and policies to improve access to, and take-up of, services was recommended. This article presents the important elements relating to equal access to specialist palliative care and the provision of culturally sensitive services, and examines the role of the Macmillan Ethnic Minorities Liaison Officer in the Bradford community palliative care team.     

'A softening of edges': a comparison of yoga classes at palliative care services in New Delhi and London

Although the use of yoga as a complementary therapy is common in palliative care, there is little evidence regarding current practice to inform service provision and research. The aim was to explore and compare yoga classes offered by palliative care services in New Delhi and London. Semi-structured qualitative interviews were conducted with yoga teachers and participants at two services and analysed thematically. Participants were: in Delhi eight family carers, three patients, and two teachers; in London six patients, one teacher, and one assistant. Six key themes are described: content of classes, symptoms and problems, preconceptions and the meaning of yoga, effects of yoga, challenges, and recommendations. This is the first study to examine the experiences of patients and carers practising yoga in palliative care settings. Recommendations include supporting and educating yoga teachers working with this population, and the need for robust trials.     

‘Juggling amidst complexity’ – Hospice staff's experience of providing palliative care for infants referred from a neonatal unit

Hospice has been pivotal to children's palliative care provision in the United Kingdom (UK) for more than 3 decades. Some hospices have recently expanded to include care of infants transferred from neonatal units as well as antenatal referrals. Despite developments evidence suggests hospice care is often not offered to parents in neonatal units (NNU). This study examines perspectives of 17 staff from 3 children's hospices regarding the challenges and opportunities caring for infants in hospice. Data was collected from 3 focus groups and analysed using a thematic approach. Findings suggest that hospice staff juggle many complex issues when caring for infants at the end-of-life. Such issues centre round the referral process from hospital services borne from an apparent reluctance of hospital staff to let go, through involving hospice. Education, partnership working, planning for all possible outcomes seems crucial in further developing quality palliative care for infants and their families.