Priority 12 from the Palliative and end of life care PSP

UNCERTAINTY:  What are the best ways for healthcare professionals to tell patients, carers and families that a patient's illness is terminal and also explain the dying process compassionately and honestly?  Can literature, including leaflets, be helpful?  Who is the best person to provide this information and communication?  (JLA PSP Priority 12)
Overall ranking 12
JLA question ID 0026/12

Houben CH, Spruit MA, Groenen MT, Wouters EF, Janssen DJ. Efficacy of advance care planning: a systematic review and meta?analysis. Journal of the American Medical Directors Association.2014;15(7):477?489 PMID: 24598477

Fawole OA, Dy SM, Wilson RF, Lau BD, Martinez KA, Apostol CC, Vollenweider D, Bass EB, Aslakson RA. A systematic review of communication quality improvement interventions for patients with advanced and serious illness. Journal of General Internal Medicine. 2013;28(4):570?577 PMID: 23099799

Ongoing controlled trialsHealth System Intervention to Improve Communication About End-of-Life Care for Vulnerable Patients NCT01933789  

Dignity Talk: a Novel Palliative Care Intervention for Patients and Their Families NCT01883375  

Improving communication and quality of life (QOL) at the end of life: A randomised controlled trial of a multifocal communication intervention for patients with advanced incurable cancer, carers and doctors.

Health Research Classification System category  Generic
Extra information provided by this PSP
Original uncertainty examples Why can't doctors and clinicians be more honest and clear in their explanations about end of life and prognosis?  ~  Why are the patients, carers and families not told about what to expect during the last couple of days/hours before passing?  ~  More information about the extreme side of end of a life should be available to help plan better.  ~  What is the policy about being honest with carers?  ~  My mum was quite stubborn and did not really want anyone else involved,how would you talk to her?
Submitted by Professionals x 2  ~  Bereaved carers x 1
Outcomes to be measured Health related quality of life; health related cost.
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