Priority 24 from the Palliative and end of life care PSP

UNCERTAINTY:  What are the best care packages for patients, carers, family and staff which combine health care and social care and take individual prognosis into consideration?     (JLA PSP Priority 24)
Overall ranking 24
JLA question ID 0026/24
Evidence

Chan RJ, Webster J. End-of-life care pathways for improving outcomes in caring for the dying. Cochrane Database of Systematic Reviews 2013, Issue 11. Art. No.: CD008006. DOI: 10.1002/14651858.CD008006.pub3.  Mead EL, Doorenbos AZ, Javid SH, Haozous EA, Alvord LA, Flum DR, Morris AM. Shared decision-making for cancer care among racial and ethnic minorities: a systematic review. American Journal of Public Health. 2013; 103 (12): e15 PMID: 24134353

Ongoing trialsINSPIRE study: INvestigating Social and PractIcal suppoRts at the End of life ISRCTN18400594  Implementation of the Care Pathway for Primary Palliative Care in Five Research Clusters in Belgium NCT02266069  

A study to assess the feasibility of introducing early palliative care in ambulatory patients with advanced lung cancer http://www.ctri.nic.in/Clinicaltrials/pmaindet2.php?trialid=7526  

Health Research Classification System category  Generic
Extra information provided by this PSP
Original uncertainty examples Will there be a gold standard recommendation to guide hospital staff in the final days or hours of a person's life?  ~  Re the organisation of care for people in acute wards who are rapidly approaching the end of their lives:  What forms of service organisation work best to maximise quality of care - e.g. palliative care keyworkers, equivalent of midwives, palliative care teams working as advisors, palliative care experts working hands on, etc.  ~  How could oncology be changed to align with a more person centered approach using joint decision making?
Submitted by Professionals x 5  ~  Bereaved Carers x 1     
Outcomes to be measured Patient Satisfaction; health related quality of life; health related cost; timing of access to care and support; good death
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