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"The conversation that rarely happens". End of life care conversations with heart failure patients: a systematic literature review and narrative synthesis.

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Presentation on theme: ""The conversation that rarely happens". End of life care conversations with heart failure patients: a systematic literature review and narrative synthesis."— Presentation transcript:

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 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 Research questions

4 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 Methods

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

6 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 Gough’s weight of evidence

7 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 Results Prevalence of discussions

8 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) Patients’ attitudes to EOLC discussions

9 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) Professionals’ attitudes to EOLC discussions

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 PolicyPractice What? Sufficient opportunities Optimism vs realism Many do not have these discussions Uncertainty and fear of causing anxiety is a major barrier When? Offer at all stages in disease trajectory Difficult to judge – for clinicians and for patients Who? Clinician with established relationship Preferred by patients and clinicians, but frequently discussed with unfamiliar clinicians How? Open, sensitive, honest ‘Ask, tell, ask’ Clinicians feel they lack necessary communication skills How to elicit patients’ desire for information?

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

13 Agard A2004Heart and Lung (2004): 33 (4); 219-226High Agard A2000Journal of Internal Medicine (2000): 248; 279-286Medium Aldred H2005Journal of Advanced Nursing (2005): 49 (2); 116-124High Barnes S2006Health and Social Care in Community (2006): 14 (6); 482-490High Borbasi S2005Australian Critical Care (2005): 18 (3); 104-113High Boyd K2004European Journal of Heart Failure (2004): 6; 585-591High Brannstrom M2005European Journal of Cardiovascular Nursing (2005); 4: 313-323High Caldwell P2007Canadian Journal of Cardiology (2007): 23 (10); 791-796High Formiga F2004QJM: An International Journal of Medicine (2004): 97; 803-808Medium Gott M2008Social Science and Medicine (2008): 67 (7); 113-121High Hanratty B2002British Medical Journal (2002): 325; 581-585High Harding R2008Journal of Pain and Symptom Management (2008): 36; 149-156High Haydar Z2004Journal of American Geriatrics Society (2004): 52; 736-740Medium Heffner J2000Chest (2000): 117; 1474-1481Medium Horne G2004Palliative Medicine (2004): 18; 291-296High Johnson M2009British Journal of Cardiology (2009): 16; 194-196Low Murray S2002British Medical Journal (2002): 325; 929-934High Rodriguez K2008Heart and Lung (2008): 37 (4); 257-265Medium Rogers A2000British Medical Journal (2000): 321; 605-607High Selman L2007Heart (2007): 93; 963-967High Strachan P2009Canadian Journal of Cardiology (2009): 25 (11); 635-640High Willems D2004Palliative Medicine (2004): 18; 564-72Medium Wotton K2008Heart and Lung (2008): 37 (4); 257-265High

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