• Richard Harding, Lucy Selman, Teresa Beynon, Fiona Hodson, Elaine Coady, Caroline Read, Michael Walton, Louise Gibbs, and Irene J Higginson.
• Department of Palliative Care, Policy & Rehabilitation, King's College London School of Medicine, London, United Kingdom. richard.harding@kcl.ac.uk
• J Pain Symptom Manage. 2008 Aug 1;36(2):149-56.

AbstractThere 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.

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