Priority 15 from the Palliative and end of life care PSP

UNCERTAINTY:  How can distress that is not related to pain be best assessed and managed in palliative patients with dementia, Parkinson's disease and other diseases that affect communication?  (JLA PSP Priority 15)
Overall ranking 15
JLA question ID 0026/15
Evidence

Lonergan E, Luxenberg J, Colford JM, Birks J. Haloperidol for agitation in dementia. Cochrane Database of Systematic Reviews 2002, Issue 2. Art. No.: CD002852. DOI: 10.1002/14651858.CD002852.  

Rueda JR, Sol? I, Pascual A, Subirana Casacuberta M. Non-invasive interventions for improving well-being and quality of life in patients with lung cancer. Cochrane Database of Systematic Reviews 2011, Issue 9. Art. No.: CD004282. DOI: 10.1002/14651858.CD004282.pub3.

Ongoing trial: Effects of a behavioral intervention for agitation of people with dementia http://www.trialregister.nl/trialreg/admin/rctview.asp?TC=4815

Health Research Classification System category  Generic
Extra information provided by this PSP
Original uncertainty examples What sort of help works best - control of pain and other symptoms, ensuring no restlessness or distress?  ~  How are people with communication difficulties supported to ensure that they can still communicate with their family, friends and carers when they can no longer speak (e.g. people who have MND, people with brain tumour, head and neck cancer).  ~  Terminal agitation is a term that has little meaning. Hyperactive delirium at the end of life is a more accurate description. The difference is important since the former is traditionally treated with midazolam while the latter sets in train an assessment and management of the cause and, if drugs are needed, non-sedative haloperidol becomes first choice.  An evaluation of end of life hyperactive delirium is long overdue.
Submitted by Professionals x 2 
Outcomes to be measured Patient Satisfaction; health related quality of life; health related cost; change in symptoms; change in management of symptoms.
PSP information
PSP unique ID 0026
PSP name Palliative and end of life care
Total number of uncertainties identified by this PSP. 83  (To see a full list of all uncertainties identified, please see the detailed spreadsheet held on the JLA website)
Date of priority setting workshop 21 November 2014