"The conversation that rarely happens". End of life care conversations with heart failure patients:...
-
Upload
shayne-hostler -
Category
Documents
-
view
220 -
download
3
Transcript of "The conversation that rarely happens". End of life care conversations with heart failure patients:...
"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
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
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
• 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
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
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
• 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
ResultsPrevalence of 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)
Patients’ 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)
Professionals’ attitudes to EOLC discussions
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)
Discussion
Policy PracticeWhat? 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?
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
Agard A 2004 Heart and Lung (2004): 33 (4); 219-226 High
Agard A 2000 Journal of Internal Medicine (2000): 248; 279-286 Medium
Aldred H 2005 Journal of Advanced Nursing (2005): 49 (2); 116-124 High
Barnes S 2006 Health and Social Care in Community (2006): 14 (6); 482-490 High
Borbasi S 2005 Australian Critical Care (2005): 18 (3); 104-113 High
Boyd K 2004 European Journal of Heart Failure (2004): 6; 585-591 High
Brannstrom M 2005 European Journal of Cardiovascular Nursing (2005); 4: 313-323 High
Caldwell P 2007 Canadian Journal of Cardiology (2007): 23 (10); 791-796 High
Formiga F 2004 QJM: An International Journal of Medicine (2004): 97; 803-808 Medium
Gott M 2008 Social Science and Medicine (2008): 67 (7); 113-121 High
Hanratty B 2002 British Medical Journal (2002): 325; 581-585 High
Harding R 2008 Journal of Pain and Symptom Management (2008): 36; 149-156 High
Haydar Z 2004 Journal of American Geriatrics Society (2004): 52; 736-740 Medium
Heffner J 2000 Chest (2000): 117; 1474-1481 Medium
Horne G 2004 Palliative Medicine (2004): 18; 291-296 High
Johnson M 2009 British Journal of Cardiology (2009): 16; 194-196 Low
Murray S 2002 British Medical Journal (2002): 325; 929-934 High
Rodriguez K 2008 Heart and Lung (2008): 37 (4); 257-265 Medium
Rogers A 2000 British Medical Journal (2000): 321; 605-607 High
Selman L 2007 Heart (2007): 93; 963-967 High
Strachan P 2009 Canadian Journal of Cardiology (2009): 25 (11); 635-640 High
Willems D 2004 Palliative Medicine (2004): 18; 564-72 Medium
Wotton K 2008 Heart and Lung (2008): 37 (4); 257-265 High