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.