Table 3, Review protocol: Shared decision making - Care of Dying Adults in the Last Days of Life

Review question	What are the facilitators and barriers to the multi-professional team, dying person and those important to them in being involved in shared decision making to inform the development of personalised care plans for the last days of life?
Objective	To consider which positive and negative experiences and opinions of the dying person and those important to them to facilitate or hinder the formulation of personalised care plans for the last days of life and how they can be used to improve current practice. To consider which positive and negative experiences and opinions of healthcare professionals could be used to facilitate the active involvement of dying people and those important to them in formulating personalised care plans.
Population and setting	Adults who have been recognised as likely to be entering the last days of life, those important to them and healthcare professionals in all settings where NHS funded care is provide.
Context	Context: Care planning in the last days of life Outcomes: Themes will be identified from the literature. For example: Professional reticence to include dying people in development of personalised care plans. Shared decision making in response to sudden changes Reviewing situation regularly People with cognitive disabilities People with learning difficulties People with communication disorders.
Exclusions	None
Search strategy	The databases to be searched are Medline, Embase, The Cochrane Library, CINAHL, PsychINFO Studies will be restricted to English language only.
Review strategy	Study designs to be considered: Qualitative studies (for example, interviews, focus groups, observations) Surveys. Review strategy: Population size and directness: No sample size specification (for surveys). Studies with indirect populations will not be considered for example, personalised care plans for people who are not in their last days of life. Setting: Any setting where people receive care relevant to NHS care. Appraisal of methodological quality The methodological quality of each study will be assessed using NCGC modified NICE checklists and the quality of the evidence will be assessed by a modified GRADE approach for each outcome. Data synthesis Thematic analysis of the data will be conducted and findings presented. Data on the following groups will be presented separately, if the evidence allows: Dementia or other cognitive impairment Learning disabilities. The recommendations made in CG138 (NICE guideline on ‘Patient experience in adult NHS services’ ³⁴¹ will be taken into consideration where appropriate.

Review question

What are the facilitators and barriers to the multi-professional team, dying person and those important to them in being involved in shared decision making to inform the development of personalised care plans for the last days of life?

Objective

To consider which positive and negative experiences and opinions of the dying person and those important to them to facilitate or hinder the formulation of personalised care plans for the last days of life and how they can be used to improve current practice.
To consider which positive and negative experiences and opinions of healthcare professionals could be used to facilitate the active involvement of dying people and those important to them in formulating personalised care plans.

Population and setting

Adults who have been recognised as likely to be entering the last days of life, those important to them and healthcare professionals in all settings where NHS funded care is provide.

Context

Context: Care planning in the last days of life
Outcomes:
Themes will be identified from the literature. For example:

Professional reticence to include dying people in development of personalised care plans.
Shared decision making in response to sudden changes
Reviewing situation regularly
People with cognitive disabilities
People with learning difficulties
People with communication disorders.

Exclusions

None

Search strategy

The databases to be searched are Medline, Embase, The Cochrane Library, CINAHL, PsychINFO
Studies will be restricted to English language only.

Review strategy

Study designs to be considered:

Qualitative studies (for example, interviews, focus groups, observations)
Surveys.

Review strategy:

Population size and directness:
- No sample size specification (for surveys).
- Studies with indirect populations will not be considered for example, personalised care plans for people who are not in their last days of life.

Setting:

Any setting where people receive care relevant to NHS care.

Appraisal of methodological quality
The methodological quality of each study will be assessed using NCGC modified NICE checklists and the quality of the evidence will be assessed by a modified GRADE approach for each outcome.
Data synthesis
Thematic analysis of the data will be conducted and findings presented.

Data on the following groups will be presented separately, if the evidence allows:

Dementia or other cognitive impairment
Learning disabilities.

The recommendations made in CG138 (NICE guideline on ‘Patient experience in adult NHS services’ ³⁴¹ will be taken into consideration where appropriate.

From: Appendix C, Clinical review protocols

Care of Dying Adults in the Last Days of Life.

NICE Guideline, No. 31.

National Clinical Guideline Centre (UK).

London: National Institute for Health and Care Excellence (NICE); 2015 Dec 16.

NCBI Bookshelf. A service of the National Library of Medicine, National Institutes of Health.

Table 3Review protocol: Shared decision making