"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