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Table 4 Changes required to enable specialist palliative care H&SCPs to engage frail elders with ACP

From: Development of a theory-based intervention to increase cognitively able frail elders’ engagement with advance care planning using the behaviour change wheel

What needs to happen for the target behaviour to occur? Evidence to support the need for change
Evidence includes all data sources unless otherwise noted:
1. Interviews, 2. Integrative review 3. Survey
COM-Ba & TDF domainb
Health and social care professionals (H&SCPs) need an awareness of:
Why ACP is relevant to frail elders and why ACP needs to start early. Frailty brings potential for fluctuating capacity & sudden deterioration (2, 3)
Prognostication is difficult (2)
Physical and psychological capacity likely reduce over time (2)
Not engaging in ACP can lead to inappropriate hospitalisations, under- over-treatment, can be burden for family if they do not know what frail elder wanted. (2, 3)
Crisis decision-making is difficult (2,3)
Time needed to understand relevant concepts
Psych cap/ Know
What ACP means for frail elders Frail elders/families misunderstanding what ACP is
Lack of ACP relevance/importance of living well now for frail elders
Focus on shared rather than autonomous decision-making
Importance of relationships
 
H&SCPs need to know:
The key triggers to instigate ACP for frail elders Prognostication difficult (2, 3)
Triggers often not acted on
Can help with relevance for all stakeholders, and decision-making
Psych cap/ Know
Why to use the individual’s previous experiences, scenarios, vignettes, storytelling, reminiscence, to help demonstrate ACP relevance Previous experiences can encourage engagement and help make ACP more relevant (1, 2)
Can encourage engagement, demonstrate and explain ACP’s usefulness, and help make ACP more relevant
 
Why to progress ACP conversations at the individual’s pace Most frail elders happy to engage if conversations go at their pace
Going too fast may lead to upset or distress, going too slow may lead to conversations never happening
 
Why to correct any misunderstandings regarding ACP ACP unclear and can be confusing for frail elders and families
Lack of shared language can lead to misunderstanding what ACP can offer, what palliative care is, potential of medical treatments etc.
Lack of understanding about what ACP is and means can reduce engagement
 
Why preparing frail elders for ACP can be beneficial
Why including family in preparations can be helpful
Frail elders need time to engage with the concept of ACP
Family are important to frail elders, particularly in regards ACP decision-making
 
H&SCPs need the skills to
Use language the frail elder/family understand
Summarise conversations and confirm understanding
Ensure frail elders understand decisions they could, or do, make
ACP language can be confusing or misleading
ACP language often vague
No shared ACP language
Being clear, concise, and checking understanding can help engagement
Psych cap/ Skills
Explain frailty’s likely trajectory to frail elders and their families
Explain key triggers to instigate ACP for frail elders
Trajectory is uncertain (2,3)
If not understood can mean ACP seems irrelevant to frail elder/family (2, 3)
Understanding triggers can help with relevance, for all stakeholders, and decision-making
Explaining triggers can help develop relationship with frail elder and family
 
Prepare frail elders for ACP conversations
Recommend frail elders think about goals and preferences and discusses with family where relevant, prior to ACP
Ensure frail elders understand what ACP includes.
Frail elders are more likely to engage in ACP if:
They have time to prepare for the conversation
They understand what ACP means
They know what will be discussed
They understand how ACP could be relevant to them
Their family are involved to the degree the frail elder wishes.
Psych cap/ Skills
H&SCPs need to know:
Why it’s important to proactively use and create opportunities to engage frail elders with ACP Many opportunities for ACP are missed e.g. not having the conversation until frail elder in crisis, not starting conversations
Proactively creating and using opportunities encourages engagement. Opportunities include triggers, poor prognostic indicators, transitions and cues from frail elders and family.
Psych cap/ Know
Why ACP should be series of conversations rather than a single discussion Frail elders need time to engage with ACP
ACP preferences can change over time
Need to build relationships
ACP as standard practice would likely increase engagement
 
Why ACP conversations should be treated as normal, every-day conversations. Frail elders prefer a normal, every-day approach to ACP (1)  
H&SCPs need the skills to:
Approach ACP as normal, every-day conversations
Use gentle language, a light-hearted approach and, where appropriate, humour
Be honest and frank regarding whether current or future care choices are likely/possible e.g. ceilings of treatment, hospice
ACP as standard practice is likely to increase engagement
Frail elders recommend using a light-hearted approach, gentle language, and where appropriate, humour (1).
Frail elders recommend using an honest and frank approach, that moves at the individual’s pace (1).
ACP can be unclear and lead to misunderstandings e.g. what ACP can offer, what palliative care is, potential of medical treatments etc.
Psych cap/ Skills
H&SCPs need to know:
When to encourage family inclusion in ACP
Why including/promoting family inclusion is beneficial
How to help family understand the frail elder’s wishes and what fulfilling them may mean
How to facilitate conversations between frail elders and family
Relationships are important to frail elders
Relational decision making is often promoted over individual decision making
Family likely to be involved if ACP needs to be enacted, but often do not know the frail elders’ preferences
ACP for frail elders is often more about supporting the family
Psych cap/ Know
H&SCPs need an awareness of
Why establishing current goals/what matters now is relevant
Why identifying future preferences based on the frail elder’s values, and those they would rather avoid, is relevant
How to help frail elders think about parallel planning
ACP as future planning for dying and death is not relevant to many frail elders.
Most frail elders focus more on living well now than future planning
ACP needs to be relevant to frail elders’ lives for them to wish to engage.
Planning for living well now can help frail elders engage with what might happen in the future (parallel planning)
Psych cap/ Know
Explain the relevance of ACP to the individual, their values and beliefs, using clear, understandable terms ACP as future planning for dying and death is not relevant to many frail elders.
Focussing on current values, and those to avoid, can make ACP easier to relate to.
Using frail elders past healthcare experiences, or those of family/friends can help engagement
Psych cap/ Skills
H&SCPs need to:
Give frail elders clear, understandable information prior to ACP conversations Lack of understanding about what ACP means
Frail elders need time to engage with the concept of ACP
Frail elders are more likely to engage if they know what will be discussed and understand how ACP could be relevant to them
Phy opp/Env
Create a conducive environment to facilitate ACP discussions ACP more likely to happen in a conducive environment e.g. at home or where the person is comfortable, where there is time, when key people are in attendance (e.g. family), when the conversation is expected.  
H&SCPs need to see:
Other staff facilitating ACP following this approach Engaged leaders are strong ACP drivers (2)
Support/mentoring from colleagues can help overcome ACP barriers and improve skills (2, 3)
Soc opp/ Soc
ACP is relevant for frail elders Prognostication is difficult
Professionals often do not start conversations as they are concerned about upsetting the frail elder or their families
Ref mot/
Bel cons
The benefit of including family in ACP Relationships are important to frail elders
Decisions are often made in relation rather than autonomously
 
ACP conversations with frail elders should start early Frail elders’ uncertain trajectory means they could have a significant deterioration at any time.
Starting ACP early allows for frail elders to engage when they have the most physical and psychological capacity
Frail elders need time to engage with the concept of ACP and to amend thoughts as things change
 
Living well now is relevant to frail elders in regards ACP Most frail elders prefer to focus on living well now than planning for dying and death.
ACP needs to be relevant for frail elders to wish to engage.
Planning for living well now can help frail elders engage with what might happen in the future (parallel planning)
 
Using a gentle, honest approach will help frail elders engage with ACP Frail elders recommend using a light-hearted approach, gentle language, honesty, and where appropriate, humour (1).  
H&SCPs need to:
Create reminders to trigger introducing the concept of ACP to frail elders prior to conversations. Frail elders are more likely to engage in ACP if:
They have time to prepare for the conversation
They understand what ACP means
They know what will be discussed
They understand how ACP could be relevant to them
Aut mot/ Reinf
Establish a routine of reassessing ACP decisions every 6 months, or following an ACP trigger Frail elders’ uncertain trajectory means they could have a significant deterioration at any time. (2,3)
Reassessing regularly means the frail elder is given the opportunity to reassess decisions as things change (2,3)
 
Create triggers to remember to promote and include family in conversations Relationships are important to frail elders and can impact ACP decision-making
Family likely to be involved if ACP needs to be enacted, but often do not know the frail elders’ preferences
 
  1. a COM-B components: Psych cap = Psychological capability, Phy Opp = Physical opportunity, Soc Opp = Social opportunity, Ref mot = Reflective motivation, Aut mot = Automatic motivation. b TDF domains: Bel cons = Belief about consequences, Env = Environment context and resources, Know = Knowledge, Reinf = Reinforcement, Skills = Cognitive and interpersonal skills, Soc = Social influences