Priority 23 from the Advanced Heart Failure PSP

UNCERTAINTY: How do health professionals respond when people with advanced heart failure ask ‘When am I going to die? Are we talking days, months, years? What about sudden death?’ (JLA PSP Priority 23)
Overall ranking 23
JLA question ID 0098/23
Explanatory note

There are risk prediction studies for advancement of disease  but with no patient focus 


Rahimi K, Bennett D, Conrad N, Williams TM, Basu J, Dwight J, Woodward M, Patel A, McMurray J, MacMahon S. Risk prediction in patients with heart failure: a systematic review and analysis. ACC Heart Fail. 2014 Oct;2(5):440-6. doi: 10.1016/j.jchf.2014.04.008. Epub 2014 Sep 3.
Alba AC, Agoritsas T, Jankowski M, Courvoisier D, Walter SD, Guyatt GH, Ross HJ.
Risk prediction models for mortality in ambulatory patients with heart failure: a systematic review. Circ Heart Fail. 2013 Sep 1;6(5):881-9. doi: 10.1161/CIRCHEARTFAILURE.112.000043. Epub 2013 Jul 25.

Health Research Classification System category  Cardiovascular
Extra information provided by this PSP
Original uncertainty examples Can you be more specific about prognosis?  ~ Can I be given a provisional timeline of cardiac failure? ~ How can I best deal with coming to terms with my mortality following a poor prognosis for my heart failure ? ~ Both my heart failure nurses are great yet sometimes feel as I do when seeing my cardiologist that my concerns and fears are not always addressed. I sometimes feel that I'm am been told things to give me hope. However these things never come such as appointments for tests or possible procedures. As for my GP I tend not to see them as they just do not understand the condition and never take any notice of what I have to say. ~ How long have I got to live? 
Submitted by  4 x patients, 2 x health professionals, 1 x carer
PSP information
PSP unique ID 0098
PSP name Advanced Heart Failure
Total number of uncertainties identified by this PSP. 65  (To see a full list of all uncertainties identified, please see the detailed spreadsheet held on the JLA website)
Date of priority setting workshop 13 February 2019