Aims
Heart failure and COPD are life-limiting illnesses, but with great uncertainty over prognosis. Policy increasingly states the importance of discussions about end of life care between patients and their clinicians. This study reviews the extent to which there is evidence that these conversations occur for heart failure or COPD patients in practice.
Methods
Systematic literature reviews concerning the preferences of health care professionals and patients with 1) heart failure and 2) advanced COPD with regards to discussions about end of life care, the timing and the barriers, cues and facilitators to these discussions.
Outcomes
The first review on these discussions in heart failure is completed and has generated two papers; one in the British Journal of General Practice and one invited review in Current Opinion in Supportive and Palliative Care. The second systematic review on discussions in COPD (which involved Dr Peter Hadfield, a CLAHRC fellow) has been published in Thorax.
The research literature reviewed in our first study identifies numerous barriers to open communication with heart failure patients about the end of life.
While some patients would welcome a conversation about the future, others view heart failure as a chronic rather than life-limiting condition. Some patients do not wish to have such conversations when they are feeling well. Others may wish to have discussions, but feel unable to initiate them or know what questions to ask. Another barrier for clinicians is the uncertainty of prognosis: half of deaths in heart failure are sudden. Clinicians fear creating anxiety and destroying hope and usually wait for patients to raise the topic. As a result, these conversations rarely take place.
The research suggests the current approach to end of life care conversations for cancer patients may not be appropriate for those with heart failure.
Partners
Our partners in this study include NHS Cambridgeshire and NHS Peterborough.
The results have also been shared with colleagues in the national End of Life Care Programme, the NHS Improvement Agency and the British Heart Foundation.
For more information contact: Dr Stephen Barclay, Department of Public Health and Primary Care, University of Cambridge, sigb2@medschl.cam.ac.uk
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Academic Publications
Momen N, Hadfield P, Kuhn I, Smith E, Barclay S. (2012). “Discussing an uncertain future: End of Life Care conversations in COPD. A systematic literature review and narrative synthesis”. Thorax: 67; 777 – 780. doi:10.1136/thoraxjnl-2012-201835.
End of life care conversations with heart failure patients: a systematic literature review and narrative synthesis
Stephen Barclay, Natalie Momen, Steve Case-Upton, Isla Kuhn and Elizabeth Smith. Br J Gen Pract 2011; DOI: 10.3399/bjgp11X549018.
Addressing ‘the elephant on the table’: barriers to end of life care conversations in heart failure – a literature review and narrative synthesis
Natalie C. Momen and Stephen I.G. Barclay. Current Opinion in Supportive and Palliative Care 2011, 5:000–000
Other links
Download the CLAHRC BITE on end of life care discussions.
Powerpoint presentation on “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.