What information and training do carers and families need to provide the best care for their loved one who is dying?

Record type Uncertainties identified from carers' questions
Source James Lind Alliance Palliative and end of life care Priority Setting Partnership
Why is there uncertainty? Reliable up-to-date systematic reviews have revealed important continuing uncertainties about treatment effects

Original Uncertainty

Ranked 4th in the PeolcPSP

This uncertainty was identified from one carer's, one volunteer's, four professionals' and six bereaved carers' questions.

This is an indicative uncertainty and the following submissions were merged to form this one:
If I had had more idea of what it involved and more support during the process I suspect I could have avoided the resulting problems for me
I knew she was dying but I did not know how it would happen. Had I known in advance I would have been able to help more I'm sure of it
The families and carers need to be talked through the whole process. I have found that palliative pt's and families are not given enough information
Ability for carers to have some training to recognise the end of life signs

References to reliable up-to-date systematic reviews:

Capurro D, Ganzinger M, Perez?Lu J, Knaup P. Effectiveness of ehealth interventions and information needs in palliative care: a systematic literature review. Journal of Medical Internet Research.2014;16(3):e72 DOI: 10.2196/jmir.2812

What is needed? Further research
Systematic reviews that need updating or extending Candy B, Jones L, Drake R, Leurent B, King M. Interventions for supporting informal caregivers of patients in the terminal phase of a disease. Cochrane Database of Systematic Reviews 2011, Issue 6. Art. No.: CD007617. DOI: 10.1002/14651858.CD007617.pub2
Systematic reviews in preparation Horey D, Street AF, O'Connor M, Peters L, Lee S. Training and supportive programs for palliative care volunteers in community settings (Protocol). Cochrane Database of Systematic Reviews 2011, Issue 12. Art. No.: CD009500. DOI: 10.1002/14651858.CD009500
Ongoing controlled trials Exploratory delayed intervention randomised controlled trial to investigate the feasibility, acceptability and potential effectiveness of a volunteer-led model of social and practical support with community dwelling adults living with advanced life-limiting illness in Limerick, Ireland. ISRCTN18400594 The effectivensess of the National Quality Improvement Program Palliative Care on the number of patients that die at the preferred place, the patients? and family?s experienced control regarding end-of-life care, the patients? and family?s experienced coordination of end-of-life care, the patients? and family?s experienced concordant care with their needs, preferences and values, and the number of patients and families that receive care for their needs in the physical, psychosocial, and spiritual domains - N/A [See web page] A prospective cohort study exploring the impact of offering telehealth support to palliative patients and their family caregivers to enhance the community based palliative care service [See web page] For family carers of hospitalised palliative care patients, does a Structured Family Meeting shortly after admission to palliative care, compared to standard care only, improve psychological distress? [See web page]


Which health conditions? Service delivery, organisation and staffing | Palliative and end of life care
What is person's age? Adult
Which types of treatments? Service delivery

Which Outcomes

Patient Satisfaction; health related quality of life; health related cost; good death; information needs

Record ID: Publication date:08 Sep 2015
Last reviewed date:08 Sep 2016 Publication Type:Known Uncertainty
The DUETs team endeavours to ensure that information is correct at the time of data entry