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