title: Living with an unfixable heart: a qualitative study exploring the experience of living with advanced heart failure.
abstract: BACKGROUND
  Nurses working with patients with advanced heart failure need knowledge that will help us to help patients cope with their situations of chronic illness. However, our knowledge bank is deficient due to the scarcity of inquiry that takes the affected person's point of view as its central focus.
  
  
  OBJECTIVE
  The aim of this study was to describe patients' experiences of living with advanced heart failure.
  
  
  METHODS
  The study sample (N=9) consisted of male (N=6) and female (N=3) patients with advanced (NYHA classes III-IV) heart failure. The design was qualitative and open unstructured interviews were audio-taped and transcribed verbatim during 2006.
  
  
  RESULTS
  Four main themes emerged: Living in the Shadow of Fear; Running on Empty; Living a Restricted life; and Battling the System. The experience of living with advanced heart failure was described as a fearful and tired sort of living characterised by escalating impotence and dependence.
  
  
  CONCLUSIONS
  The findings suggest that there may be an illogical but enduring ethos of 'cure' pervading health care worker's attitudes to advanced heart failure care. This mindset might be working to hinder the application of additional or alternative therapies, which might better palliate the physical and psychosocial distress of patients.
authors.affiliation: Clinical Nurse Specialist, Heart Failure, CResT Department, St. James Hospital, Dublin 8, Ireland. meryan@stjames.ie
authors.forename: Marie
authors.initials: M
authors.lastname: Ryan
authors.forename: Mary
authors.initials: M
authors.lastname: Farrelly
mesh_terms: D000223:Adaptation, Psychological; D000342:Affective Symptoms / Q000451:nursing / Q000523:psychology; D000368:Aged; D000369:Aged, 80 and over; D001294:Attitude to Health; D003863:Depression / Q000451:nursing / Q000523:psychology; D005239:Fear / Q000523:psychology; D005260:Female; D006333:Heart Failure / Q000451:nursing* / Q000523:psychology*; D006380:Helplessness, Learned; D006801:Humans; D008297:Male; D008875:Middle Aged; D015404:Nursing Methodology Research; D010166:Palliative Care / Q000379:methods* / Q000523:psychology; D012720:Severity of Illness Index; D012944:Social Support