Table 35, Summary of evidence: Theme 3 – factors relating to patients - Care of Dying Adults in the Last Days of Life

Study design and sample	Descriptors of themes	Quality assessment
Sub theme 1: Denial in prognosis
1	1 interview	One study in primary care in the UK interviewed patients, healthcare professionals, and family members about shared decision making.⁶ From 1 trial both the patient and the healthcare professional reported denial in prognosis as a barrier in shared decision making: Patient - “ no not at this time because I don't see myself as being that far down the road yet, I'm still quite positive, well apart from when I'm feeling really ill” Healthcare professional- “he never actually asked him where he would like to die. It was always a case of let's see what's happening with you and he steered you away form that all the time”	Limitations of evidence	Serious	LOW
Coherence of findings	Coherent
Applicability of evidence	Not applicable
Theme saturation/sufficiency	unclear
Sub theme 2: Willingness to discuss
1	1 interview	One study interviewed patients, family members and healthcare professionals in the UK around end of life decisions.⁶ Healthcare professionals identified the patients and family members initiative as a facilitator to involvement in shared decision making: “We've talked to them about where he wants to die and what the future possibly holds and how she is going to cope, what services are available, that's been a conversation we've had right from the beginning and a couple of times they've initiated it to re-visit” They also commented on patients and family members unwillingness to have conversations as a potential barrier to involvement in shared decision making: “It's very much led by the patient: if they want to know…how they are doing whatever and be guided intuitively by them really. There are some patients who will be very open and frank with you and use all the right words but there are others that will say to you or indicate ‘I know where you're going with this and I don't want to hear”	Limitations of evidence	Serious	LOW
Coherence of findings	Coherent
Applicability of evidence	Not applicable
Theme saturation/sufficiency	unclear

Study design and sample

Descriptors of themes

Quality assessment

No. of studies

Design

Criteria

Rating

Overall

Sub theme 1: Denial in prognosis

1 interview

One study in primary care in the UK interviewed patients, healthcare professionals, and family members about shared decision making.⁶ From 1 trial both the patient and the healthcare professional reported denial in prognosis as a barrier in shared decision making:

Patient - “ no not at this time because I don't see myself as being that far down the road yet, I'm still quite positive, well apart from when I'm feeling really ill”
Healthcare professional- “he never actually asked him where he would like to die. It was always a case of let's see what's happening with you and he steered you away form that all the time”

Limitations of evidence

Serious

LOW

Coherence of findings

Coherent

Applicability of evidence

Not applicable

Theme saturation/sufficiency

unclear

Sub theme 2: Willingness to discuss

1 interview

One study interviewed patients, family members and healthcare professionals in the UK around end of life decisions.⁶ Healthcare professionals identified the patients and family members initiative as a facilitator to involvement in shared decision making:

“We've talked to them about where he wants to die and what the future possibly holds and how she is going to cope, what services are available, that's been a conversation we've had right from the beginning and a couple of times they've initiated it to re-visit”

They also commented on patients and family members unwillingness to have conversations as a potential barrier to involvement in shared decision making:
“It's very much led by the patient: if they want to know…how they are doing whatever and be guided intuitively by them really. There are some patients who will be very open and frank with you and use all the right words but there are others that will say to you or indicate ‘I know where you're going with this and I don't want to hear”

Limitations of evidence

Serious

LOW

Coherence of findings

Coherent

Applicability of evidence

Not applicable

Theme saturation/sufficiency

unclear

From: 7, Shared decision making

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 35Summary of evidence: Theme 3 – factors relating to patients