Natalie Momen, Elizabeth Smith, Steve Case-Upton, Isla Kuhn and Stephen Barclay

1. "The conversation that rarely happens". End of life care conversations with heart failure patients: a systematic literature review and narrative synthesis. Natalie Momen, Elizabeth Smith, Steve Case-Upton, Isla Kuhn and Stephen Barclay

2. Background • Prognosis worse than many cancers • 38% dead within one year of diagnosis • Death can be sudden (especially in less severe stages) or through progressive heart failure (advanced disease) • NHS End of Life Care Strategy – more open communication about the end of life • End of life care (EOLC) models developed from the needs of cancer patients

3. Research questions With regard to adult patients with heart failure discussing EOLC issues with health professionals • The prevalence of these discussions • Patients’ attitudes to these discussions, their timing and content • Health professionals’ attitudes to these discussions, their timing and content • Facilitators and barriers to conversations

4. Methods • Systematic literature review (1987 – April 2010) • Medline, PsycINFO, CINAHL • Hand searching of Palliative Medicine and European Journal of Heart Failure • Empirical data on discussions about end of life or aspects of EOLC and views of adult patients with heart failure and/or views of health professionals • Data extracted using coding frame derived from research questions and analysed in NVivo using narrative approach

5. 9576 titles 8913 studies excluded 698 abstracts 592 studies excluded 106 full articles 23additional papers from reference lists and hand searches * 106 papers excluded 23 articles included *no papers identified in hand searching/reference lists suitable for inclusion in synthesis

6. Gough’s weight of evidence High, medium or low weights on three initial criteria: 1) Coherence and integrity of the evidence in its own terms 2) Appropriateness of the form of evidence for answering the review question 3) Relevance of the evidence for answering the review question 4) Overall assessment of study contribution to answering review question Of 23 papers: 16 = High, 6 = Medium, 1 = Low Gough D (2007). Weight of evidence: a framework for the appraisal of the quality and relevance of evidence In J. Furlong, A. Oancea (Eds.) Applied and Practice-based Research. Special Edition of Research Papers in Education, 22, (2), 213-228

7. ResultsPrevalence of discussions • 11 studies – ‘a few’, a small percentage or no patients had discussed prognosis, future care planning or EOLC with health professionals • Studies including interviews or surveys of patients, who do not perceive that they have had a discussions about EOLC • 2 studies - most patients had had EOLC discussions • Studies of medical records

8. Patients’ attitudes to EOLC discussions • Welcome discussions, want more information (8 studies) • Prognosis (6), make plans (3), reassurance (2) • Not want/avoid (10) • Worry/loss of hope (6) • Ambivalent views (3) • Sensitive (2), honest (4), repeated opportunities (1) • Consider when unwell (2), but less able to deal with the subject (1) • Most prefer doctors to initiate (2) • Significant minority prefer to initiate themselves (1) • ‘Plant the seed’ when symptoms are well managed? (1)

9. Professionals’ attitudes to EOLC discussions • Right to be informed of prognosis and try to give an understanding of severity (3 studies) • See a ‘good death’ in terms of open awareness (2) • Uncertain disease trajectory (5), co-morbidities (1), possibility of sudden death (2) • Terminal nature not acknowledged by patients (2) or professionals (1) • Focus on medical management rather than long term issues (4) • Worry about giving bad news too soon (1) but before patient too unwell to make plans (2) • Prefer to respond to patient questions (4)

10. Barriers and facilitators • Understanding of heart failure • Patients’ understanding of condition is limited (3) • Unrealistic hope (2) • Difficult to diagnose (1) and explain (2) • Focus on current medical aspects (2) • Uncertainty of heart failure • Prognostication difficult (7) • Risk of sudden death (2) • Comorbidities (1) • Anxiety-provoking discussions • Patients (5) and clinicians (2) fear generating anxiety • - Loss of hope (5) • Communication • - Good relationships, continuity of care (4) • Good communication skills important for professionals (2) • Many professionals felt they lacked the skills needed (2) • Time pressures (5) • Disempowered patients • Clinicians unapproachable/reluctant to discuss (3) • Unsure what questions to ask (2) • Fear being seen as difficult/demanding (2)

11. Discussion

12. End of Life: • dying • resuscitation • advanced care plan • hospice • home nursing • intubation • living wills • palliative • etc… • Disease: • heart failure • chronic heart failure • cardiac patients • cardiovascular rehabilitation • etc… • Discussion: • address • discuss • bring up • truth disclosure • communicate • etc… Search strategy & &