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.

Modelling services to meet the palliative care needs of chronic heart failure patients and their families: current practice in the UK.

OBJECTIVE: To describe current provision of specialist palliative care for chronic heart failure (CHF) patients, and explore challenges, referral criteria and recommendations to inform service development. METHOD: Semi-structured qualitative telephone survey of key professionals involved in CHF palliative care in the UK. RESULTS: Twenty telephone interviews were conducted with staff from 17 services comprising three main types: hospital-based (n = 7), community-based (n = 6) and hospice-based (n = 4). The main recommendations made were to establish mechanisms for joint working between palliative care and cardiology; to ensure that stakeholders are involved from the outset of service planning; and to involve community heart failure nurses in service provision. Referral guidelines were collected from four services, covering diagnostic, symptomatological, psychosocial and team-related criteria. CONCLUSIONS: Information regarding existing services' challenges, recommendations and referral systems is essential when designing a new service, maximising feasibility and acceptability. This study design is of particular value when descriptions and evaluations of service models are lacking in the literature. The survey gives much-needed depth and detail to the types of services currently providing palliative care to CHF patients across the UK.

Improving end-of-life care for patients with chronic heart failure: "Let's hope it'll get better, when I know in my heart of hearts it won't".

BACKGROUND: Although chronic heart failure (CHF) has a high mortality rate and symptom burden, and clinical guidance stipulates palliative care intervention, there is a lack of evidence to guide clinical practice for patients approaching the end of life. AIMS: (1) To formulate guidance and recommendations for improving end-of-life care in CHF; (2) to generate data on patients' and carers' preferences regarding future treatment modalities, and to investigate communication between staff, patients and carers on end-of-life issues. DESIGN: Semistructured qualitative interviews were conducted with 20 patients with CHF (New York Heart Association functional classification III-IV), 11 family carers, 6 palliative care clinicians and 6 cardiology clinicians. SETTING: A tertiary hospital in London, UK. RESULTS: Patients and families reported a wide range of end-of-life care preferences. None had discussed these with their clinicians, and none was aware of choices or alternatives in future care modalities, such as adopting a palliative approach. Patients and carers live with fear and anxiety, and are uninformed about the implications of their diagnosis. Cardiac staff confirmed that they rarely raise such issues with patients. Disease- and specialism-specific barriers to improving end-of-life care were identified. CONCLUSIONS: The novel, integrated data presented here provide three recommendations for improving care in line with policy directives: sensitive provision of information and discussion of end-of-life issues with patients and families; mutual education of cardiology and palliative care staff; and mutually agreed palliative care referral criteria and care pathways for patients with CHF.

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.