Table 33, Summary of evidence: Theme 1 – factors relating to healthcare professionals - Care of Dying Adults in the Last Days of Life

Study design and sample	Descriptors of themes	Quality assessment
Sub-theme 1: Communication skills
5	2 interview 3 focus group	Five studies with populations of family members and health care professionals in the UK, Norway and the USA reported poor communication skills acted as a barrier to shared decision making⁵⁹^,⁸⁴^,⁸⁷^-⁸⁹^,¹⁰⁸. The following points were identified: use of medical terminology led to family members reduced involvement in shared decision making⁸⁴ Rushed consultations prevented them from having involvement in decision making⁵⁹. A further study interviewed health care professionals who reported that practitioners often prioritise treatment and routine care which prevented discussion of patient's views and preferences ⁸⁹ The benefit of communication skills training through mentoring was reported by UK district nursing staff.⁸⁷^,⁸⁸	Limitations of evidence	Serious	LOW
Coherence of findings	Coherent
Applicability of evidence	Applicable
Theme saturation/sufficiency	Unclear
Sub-theme 2: Relationship and rapport
7	6 interview 1 focus group	Seven studies from populations of family members, surrogate decision makers and health care professionals in the UK, USA and Canada commented on the importance of a trusting relationship between healthcare professionals and dying people and their loved ones in facilitating shared decision making³^,⁶^,¹⁰^,¹⁸^,¹⁹^,⁸⁹^,⁹³^,¹⁰⁰. Respect and rapport as well as the length of time known to each other were reported as central to building a trusting relationship. When respect was perceived to be given it facilitated shared decision making, but when there was a perceived lack of respect it acted as a barrier: “Dr F. was fairly new to me, but when a doctor treats the spouse with a lot of respect and answers questions like they're important, they give you the feeling of competence. And I think Dr F made me feel like a very important part of the team”. “there was 1 doctor… he found out she (the sister in law) was [a nurse], he turned directly away from me and giving her every bit of the information and asking her all of the questions and it was like I was not even there. This doctor really almost blew it… because I was the 1 that should have been; he should have been talking directly to”.	Limitations of evidence	Serious	LOW
Coherence of findings	Coherent
Applicability of evidence	Applicable
Theme saturation/sufficiency	Unclear
Sub-theme 3: Information provision
6	4 interviews 2 focus groups	Six included studies with populations of family members surrogate decision makers and healthcare professionals in the USA and UK commented on the importance of information provision in facilitating or preventing shared decision making.³^,⁸⁴^,⁸⁷^,⁸⁹^,⁹⁷^,¹⁰⁰ Family members desired frank information about their relatives in order to help them facilitate shared decision making with 1 member in a USA study describing this as “starving for information”.⁹⁷ Family members want this information in lay terms. One family member in an American study reported: ‘“I think the medical people assume that we know a lot about these diseases and things, but we don't …. And thank god for the internet, because I went home and I became not an expert, but knowledgeable of cancer and stage IV… why do they assume I know that stage IV cancer is?”’ Poor information transfer of clinical information between health care professionals was also reported as a barrier to shared decision making. One UK study ¹⁰⁸ interviewing health care professionals highlighted that this was both between teams and across care settings. The same study also reported that there was real concern from community staff regarding the time hospital discharge letters could take to arrive, meaning people could be readmitted before they had received corresponding to the first admission.	Limitations of evidence	Serious	LOW
Coherence of findings	Coherent
Applicability of evidence	Applicable
Theme saturation/sufficiency	Unclear
Sub-theme 4: Uncertainty in prognosis
3	1 interview 2 focus groups	Three reported studies of UK health care professionals identified uncertainty of prognosis as a barrier to shared decision making.⁶^,⁸⁷^,⁸⁹ One study⁸⁷^,⁸⁸ of district nurses reported concerns about particular difficulties in prognostication of people with non-cancer long term conditions and the risk of raising issues about end of life care at an inappropriate time. “…what's going to have to change, what we're going to have to get better at, is being honest and open and having those discussions with people. There's more of an honesty in managing cancer patients about how things are, what the prognosis is, what the future holds, that doesn't exist in other diseases yet.”	Limitations of evidence	Serious	LOW
Coherence of findings	Coherent
Applicability of evidence	Applicable
Theme saturation/sufficiency	Unclear
Sub-theme 5: Role of nursing staff
2	1 interview 1 focus group	Two studies from the UK and Canada interviewed surrogate decision makers and nurses who reported on the role of nursing staff in facilitating shared decision making.¹⁹^,⁸⁷ Often the nursing staff have more time to interact with the family and dying person better allowing them to elicit care preferences, facilitate family communication and enable a shift of care focus towards palliative care.⁸⁷^,⁸⁸	Limitations of evidence	Serious	LOW
Coherence of findings	Coherent
Applicability of evidence	Applicable
Theme saturation/sufficiency	No theme saturation
Sub-theme 6: Clinical experience
4	4 interviews	Four studies with UK and Canadian health care professionals identified experience in communicating and formulating advance care plans as a facilitator for shared decision making.⁶^,³⁵^,⁶⁸^,⁹³ “I was always a bit frightened…about upsetting the patient, but since I've been working here I now realise that you're not really upsetting the patient, it's just it's a really sad topic.”	Limitations of evidence	Serious	LOW
Coherence of findings	Coherent
Applicability of evidence	Applicable
Theme saturation/sufficiency	Unclear
Sub-theme 7: Clinician availability
5	5 interviews	One American study with a population of surrogate decision makers reported clinician availability as a facilitator for shared decision making, but too many clinicians acted as a barrier due to undefined role responsibility.¹⁰⁰ Conversely 4 studies with population of UK, Norwegian, and American family members and health care professionals list clinical unavailability as a barrier to shared decision making.¹⁸^,¹⁹^,⁵⁹^,⁸⁴^,¹⁰⁰ “…Perhaps if we met regularly, we'd have a little more say in the decisions being made.” “It seems a bit of an uphill path to get information and arrange a meeting with a doctor”	Limitations of evidence	Serious	LOW
Coherence of findings	Coherent
Applicability of evidence	Applicable
Theme saturation/sufficiency	Unclear
Sub-theme 8: Timing of decision-making
4	2 interviews 2 focus groups	Four included studies from UK health care professionals commented on the difficulty in timing as a barrier to initiating shared decision making. Concern that initiating the discussions too early could be perceived as uncaring was reported in 3 studies.³⁵^,⁸⁷^,⁸⁹ Conversely a further study reported critical junctures in the course of a serious illness as an opportunity where current treatment plan could be re-evaluated and patient and family preferences could be explored.¹⁰⁸	Limitations of evidence	Serious	LOW
Coherence of findings	Unclear
Applicability of evidence	Very applicable
Theme saturation/sufficiency	Unclear
Sub-theme 9: Role responsibility
1	1 interview	One study of UK health care professionals reported that it was the responsibility of the consulting doctor and specialists, and not nursing staff, who can be involved but only after initial communication and shared decision making have occurred.⁵ 1 nurse reported: “The family have got to be told that they are near to death. I would not go in and talk about discharge and fast track [funding] without that [conversation] being done first and I don't think it's a nursing job… because there are normally more questions coming back. And the last thing I want to say is ‘actually I don't know”.	Limitations of evidence	Very Serious	LOW
Coherence of findings	Unclear
Applicability of evidence	Very applicable
Theme saturation/sufficiency	Unclear

Study design and sample

Descriptors of themes

Quality assessment

No. of studies

Design

Criteria

Rating

Overall

Sub-theme 1: Communication skills

2 interview
3 focus group

Five studies with populations of family members and health care professionals in the UK, Norway and the USA reported poor communication skills acted as a barrier to shared decision making⁵⁹^,⁸⁴^,⁸⁷^-⁸⁹^,¹⁰⁸. The following points were identified:

use of medical terminology led to family members reduced involvement in shared decision making⁸⁴
Rushed consultations prevented them from having involvement in decision making⁵⁹. A further study interviewed health care professionals who reported that practitioners often prioritise treatment and routine care which prevented discussion of patient's views and preferences ⁸⁹
The benefit of communication skills training through mentoring was reported by UK district nursing staff.⁸⁷^,⁸⁸

Limitations of evidence

Serious

LOW

Coherence of findings

Coherent

Applicability of evidence

Applicable

Theme saturation/sufficiency

Unclear

Sub-theme 2: Relationship and rapport

6 interview
1 focus group

Seven studies from populations of family members, surrogate decision makers and health care professionals in the UK, USA and Canada commented on the importance of a trusting relationship between healthcare professionals and dying people and their loved ones in facilitating shared decision making³^,⁶^,¹⁰^,¹⁸^,¹⁹^,⁸⁹^,⁹³^,¹⁰⁰. Respect and rapport as well as the length of time known to each other were reported as central to building a trusting relationship. When respect was perceived to be given it facilitated shared decision making, but when there was a perceived lack of respect it acted as a barrier:

“Dr F. was fairly new to me, but when a doctor treats the spouse with a lot of respect and answers questions like they're important, they give you the feeling of competence. And I think Dr F made me feel like a very important part of the team”.
“there was 1 doctor… he found out she (the sister in law) was [a nurse], he turned directly away from me and giving her every bit of the information and asking her all of the questions and it was like I was not even there. This doctor really almost blew it… because I was the 1 that should have been; he should have been talking directly to”.

Limitations of evidence

Serious

LOW

Coherence of findings

Coherent

Applicability of evidence

Applicable

Theme saturation/sufficiency

Unclear

Sub-theme 3: Information provision

4 interviews
2 focus groups

Six included studies with populations of family members surrogate decision makers and healthcare professionals in the USA and UK commented on the importance of information provision in facilitating or preventing shared decision making.³^,⁸⁴^,⁸⁷^,⁸⁹^,⁹⁷^,¹⁰⁰ Family members desired frank information about their relatives in order to help them facilitate shared decision making with 1 member in a USA study describing this as “starving for information”.⁹⁷ Family members want this information in lay terms. One family member in an American study reported:

‘“I think the medical people assume that we know a lot about these diseases and things, but we don't …. And thank god for the internet, because I went home and I became not an expert, but knowledgeable of cancer and stage IV… why do they assume I know that stage IV cancer is?”’

Poor information transfer of clinical information between health care professionals was also reported as a barrier to shared decision making. One UK study ¹⁰⁸ interviewing health care professionals highlighted that this was both between teams and across care settings. The same study also reported that there was real concern from community staff regarding the time hospital discharge letters could take to arrive, meaning people could be readmitted before they had received corresponding to the first admission.

Limitations of evidence

Serious

LOW

Coherence of findings

Coherent

Applicability of evidence

Applicable

Theme saturation/sufficiency

Unclear

Sub-theme 4: Uncertainty in prognosis

1 interview
2 focus groups

Three reported studies of UK health care professionals identified uncertainty of prognosis as a barrier to shared decision making.⁶^,⁸⁷^,⁸⁹ One study⁸⁷^,⁸⁸ of district nurses reported concerns about particular difficulties in prognostication of people with non-cancer long term conditions and the risk of raising issues about end of life care at an inappropriate time.

“…what's going to have to change, what we're going to have to get better at, is being honest and open and having those discussions with people. There's more of an honesty in managing cancer patients about how things are, what the prognosis is, what the future holds, that doesn't exist in other diseases yet.”

Limitations of evidence

Serious

LOW

Coherence of findings

Coherent

Applicability of evidence

Applicable

Theme saturation/sufficiency

Unclear

Sub-theme 5: Role of nursing staff

1 interview
1 focus group

Two studies from the UK and Canada interviewed surrogate decision makers and nurses who reported on the role of nursing staff in facilitating shared decision making.¹⁹^,⁸⁷ Often the nursing staff have more time to interact with the family and dying person better allowing them to elicit care preferences, facilitate family communication and enable a shift of care focus towards palliative care.⁸⁷^,⁸⁸

Limitations of evidence

Serious

LOW

Coherence of findings

Coherent

Applicability of evidence

Applicable

Theme saturation/sufficiency

No theme saturation

Sub-theme 6: Clinical experience

4 interviews

Four studies with UK and Canadian health care professionals identified experience in communicating and formulating advance care plans as a facilitator for shared decision making.⁶^,³⁵^,⁶⁸^,⁹³

“I was always a bit frightened…about upsetting the patient, but since I've been working here I now realise that you're not really upsetting the patient, it's just it's a really sad topic.”

Limitations of evidence

Serious

LOW

Coherence of findings

Coherent

Applicability of evidence

Applicable

Theme saturation/sufficiency

Unclear

Sub-theme 7: Clinician availability

5 interviews

One American study with a population of surrogate decision makers reported clinician availability as a facilitator for shared decision making, but too many clinicians acted as a barrier due to undefined role responsibility.¹⁰⁰

Conversely 4 studies with population of UK, Norwegian, and American family members and health care professionals list clinical unavailability as a barrier to shared decision making.¹⁸^,¹⁹^,⁵⁹^,⁸⁴^,¹⁰⁰

“…Perhaps if we met regularly, we'd have a little more say in the decisions being made.”
“It seems a bit of an uphill path to get information and arrange a meeting with a doctor”

Limitations of evidence

Serious

LOW

Coherence of findings

Coherent

Applicability of evidence

Applicable

Theme saturation/sufficiency

Unclear

Sub-theme 8: Timing of decision-making

2 interviews
2 focus groups

Four included studies from UK health care professionals commented on the difficulty in timing as a barrier to initiating shared decision making. Concern that initiating the discussions too early could be perceived as uncaring was reported in 3 studies.³⁵^,⁸⁷^,⁸⁹ Conversely a further study reported critical junctures in the course of a serious illness as an opportunity where current treatment plan could be re-evaluated and patient and family preferences could be explored.¹⁰⁸

Limitations of evidence

Serious

LOW

Coherence of findings

Unclear

Applicability of evidence

Very applicable

Theme saturation/sufficiency

Unclear

Sub-theme 9: Role responsibility

1 interview

One study of UK health care professionals reported that it was the responsibility of the consulting doctor and specialists, and not nursing staff, who can be involved but only after initial communication and shared decision making have occurred.⁵ 1 nurse reported:

“The family have got to be told that they are near to death. I would not go in and talk about discharge and fast track [funding] without that [conversation] being done first and I don't think it's a nursing job… because there are normally more questions coming back. And the last thing I want to say is ‘actually I don't know”.

Limitations of evidence

Very Serious

LOW

Coherence of findings

Unclear

Applicability of evidence

Very 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 33Summary of evidence: Theme 1 – factors relating to healthcare professionals