Priority 6 from the Advanced Heart Failure PSP

UNCERTAINTY: How do we break down barriers for patients with advanced heart failure, carers and health professionals to enable talking about end of life care? (JLA PSP Priority 6)
Overall ranking 6
JLA question ID 0098/06
Explanatory note

No significant evidence for people with advanced heart failure 


 No systematic reviews on this topic in past five years 

Health Research Classification System category  Cardiovascular
Extra information provided by this PSP
Original uncertainty examples Is there really an open discussion with most patients about prognosis?
~ How many patients actually feel depressed and how many have been asked about this by a healthcare profession ~  How many patients have been given advice on how to manage fatigue  ~ What proportion of patients with HF have had advance care planning discussions ~ Why don't more heart failure teams/cardiologists refer their patients earlier to palliative services ~ ii At what stage to patients want to discuss deactivation of ICDs and what are their thoughts on this? Ditto question to cardiology teams?
What is the optimum time to refer for palliative care input? How can we support heart failure specialists to embrace future care planning discussions and recording these wishes?  ~ When is the right time to engage with palliative care services? ~  At what point is it appropriate to start thinking about/raising the subject of end of life care?
Submitted by  11 x health professionals, 2 x patients, 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