Abstract

Objective 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. This study aimed to formulate guidance and recommendations for improving end of life care in CHF. The objectives were to generate data on patients and carers? preferences regarding future treatment modalities, and to investigate communication between staff, patient and carer on end of life issues.

Design Semi-structured qualitative interviews were conducted with 20 CHF patients (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 were 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 specific and specialism-specific barriers to improving end of life care were identified.

Conclusions This novel, integrated data provides 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 CHF patients.