Finding the words: Tips for having advance care planning discussions
At the end of Unit 5, you will:
- Understand the importance of timing for advance care planning discussions with individuals and family / carers
- Be aware of some conversation prompts and key phrases which can be used during advance care planning discussions
- Be aware of approaches to advance care planning discussions in difficult situations, such as family disagreement
- Be aware of cultural, religious and spiritual issues that may influence decisions about future care, and feel confident about addressing these in advance care planning discussions
- Be aware of approaches to advance care planning discussions with individuals with dementia
Advance care planning discussions can be difficult ones for the individuals involved and for health care providers. This unit considers approaches that might make these a little easier, including tips about timing and choice of words.
In this section we build on some of the issues raised in Unit 3 about the timing of advance care planning discussions. You might like to watch again the video from Dr Phil Swarbrick in Unit 3, or look at the notes that you made.
- Reflective activity
Building on your reflections from Unit 3 regarding timing:
- How confident do you feel about the timing of advance care planning discussions? Are there times that are better than others to support individuals and family / carers to have these conversations?
- Might there be particular events or cues that might prompt advance care planning discussions with individuals?
- Does your work setting have a policy on when advance care planning should take place?
Tips about timing for advance care planning discussions
The timing of an advance care planning conversation is important. These are important conversations, and it is necessary to find the right time for them, for example upon admission to a new care setting or after a hospital admission. For some individuals, a deterioration in their long-term condition, a new diagnosis, or the death of someone close to them may prompt them to think about their own future care planning.
Tips about timing:
- It is important to be sensitive when planning for, and introducing the subject of advance care planning
- Depending on your role, offer to discuss advance care planning as early as possible and at a convenient time for the individual and family / carers OR signpost them to someone who could have this discussion with them
- Look out for cues that someone is ready to engage in these conversations, for example, when an individual mentions dying
- The desire to know about, and understand, advance care planning will vary between individuals, but may also change for an individual over a period of time
- An individual’s readiness to engage in an advance care planning discussion may depend on their frame of mind and how they are feeling on the day. When making a decision about a conversation with individuals and family / carers, it can be useful to tune into how they are feeling and what is going on in their lives at the present time
- It is also important to recognise there are times when an advance care planning discussion may become imperative, for example, acute physical illness. Unit 6 of this resource addresses key issues in advance care planning in emergency situations
- Remember that advance care planning could or should be carried out over time - it is not a single conversation or event
Finding the words
- Reflective activity:
How confident do you feel talking with individuals about their end of life care, either generally, or in advance care planning discussions?
Consider any previous experiences of these kind of discussions with individuals and family / carers. What was this like? How did these discussions go? Which parts of the discussion(s) went well? Are there things that you might approach differently next time?
Choice of words
When having advance care planning discussions with individuals and family / carers, your choice of words is important.
Ideas for approaching these discussions with individuals and their family / carers.
The mnemonic LEAF might help you to keep these in mind.
Listen to individuals and their carers / families to make sure that you understand their concerns, wishes and preferences. Check in with them from time to time that you have understood what they are saying correctly.
This may not be an easy conversation for an individual or family / carer, so it is important to be supportive and to choose phrases which show that you empathise with them. You can use some of the tips mentioned by Phil Swarbrick in the video in Unit 3 to recognise and reflect when an individual appears distressed. Eg ‘You look quite worried. Would you like to talk about what’s troubling you?’
Where possible, avoid medical or technical terms to prevent misunderstandings. Try and talk to individuals and their family / carers using language they will understand. This will obviously vary between individuals, so you can sensitively check with them what they have understood as the conversation progresses.
Be honest and frank, but gentle. For example, ask ‘what have you been thinking about your health’? ‘What is your understanding about your illness?’ ‘If you were to become seriously unwell, or sick enough to die, what would you like to happen?’
Advance care planning can be a difficult subject. Individuals and family / carers may become upset when having an advance care planning discussion, but this does not necessarily mean you have done anything wrong. You might find that, despite feeling upset at the time, individuals and family / carers feel much better as a result of having these conversations. As noted in Unit 3 in the case of severe distress you might like to use a distress protocol to offer follow up support to individuals and / or family / carers.
Is there anything else related to choice of words that you think might be important?
Further resources and guidance for advance care planning conversations
Advance care planning conversations can be challenging, for both the individual and you as a health care professional. It is important that the individual feels listened to and able to share their thoughts and feelings about their future.
There are lots of communication skills models that will support you in advance care planning discussions, guiding you to use ‘cues’, open questions and empathy. Talk to your local Trust training team to see what they offer or recommend.
Want to learn more? Listen to a podcast about the SPIKES model: The Hospice Podcast
Dealing with difficult situations and managing expectations in advance care planning
We have noted that discussions about care towards the end of life can be difficult ones to have. Factors that add to the challenges of these discussions include:
- Individual approaches to wishes and preferences for care will be different for everybody
- Individuals will vary in their expectations of their condition and of the care that they might receive
- Family members may have different understandings of the individual’s condition and different expectations, and they may disagree over plans for future care
In the video below, Dr Kathryn Mannix gives tips about managing these more difficult aspects of advance care planning conversations, including managing expectations and facilitating family collaboration.
- Reflective activity:
From the video below, make some notes on the key points that Kathryn makes about communication, who to involve and phrases you might use.
Can you think of times in your professional life when you have encountered some of the difficult situations that Kathryn describes regarding communication within families? How have you managed these? What resources might you draw on for guidance and support in these situations? Are there colleagues or a manager you could talk to?
Cultural awareness and sensitivity in advance care planning
An individual’s cultural and religious background may have an impact on their approaches to health and decision-making about it. It’s important to have in mind the following points:
Preferences for treatments
For example, an individual’s spiritual beliefs may have an impact on their views towards use of life-sustaining treatments or the use of sedation towards the end of life.
Inclusion of family
There may also be cultural variations on the importance of family centred decision-making versus individual decision-making which may influence the role of the family / carers in end of life care and decision-making.
Language and expectations
Cultural or language differences can lead to misunderstandings about the purpose of advance care planning. Therefore, you may need to make sure that someone is able to act as an interpreter (ideally not a family member) in advance care planning conversations, and to take time to check the individual’s understanding of their condition and of the possible options available to them.
It’s not possible or appropriate to make assumptions about approaches towards advance care planning based on an individual’s cultural or spiritual background. Advance care planning is an individualised approach which aims to avoid assumptions and generalisations of any kind. The most important things are awareness of the need for cultural sensitivity, flexibility and listening; and seeking further advice and support if necessary.
In the video below Samina Saboor, Lead Cancer Staff Nurse and BAME Champion in her local NHS Trust talks about some key issues for cultural sensitivity in advance care planning.
- Reflective Activity:
From the video, make some notes on the key points that Samina raises here. Think about times in your professional life where cultural issues were important in supporting an individual and their family / carers. In these situations, what factors helped with communication and planning? In hindsight, were there any aspects that could have been handled better?
Advance care planning with individuals with dementia
It is important that the wishes and preferences of individuals with dementia are captured in their advance care plan where possible. When thinking about advance care planning with individuals with dementia it is important to:
- Involve family / carers but don’t exclude the individual with dementia. They may have a high degree of understanding even if they can’t communicate it
- Slow down your rate of speech to ensure that the individual has as much chance to follow and be involved as much as possible
- Ask short questions and give the individual time to answer
- Use your knowledge of the individual to help to set the discussion in the context of health issues and experiences that will be familiar to them
- Allow time for feedback. Ask for example, ‘what is your understanding …?’, ‘what do you think now that we have discussed …?’
- Repeat back to an individual your understanding of what they have said
- Look out for non-verbal communication, such as body language or facial expressions suggesting worry or distress
- Avoid jargon, and also euphemisms both of which can cause confusion
With thanks to Dr Karen Harrison Dening, Dementia UK.
Finding YOUR OWN words
Of course, all health care providers will have their own style of communicating that they feel comfortable with when discussing advance care planning, and this will vary according to the individual you are talking to.
- Reflective activity:
In the videos in this and earlier units, each of the speakers shared their thoughts and ideas about important aspects of communication with individuals and their family / carers when discussing advance care planning.
- Think about the words you might use to initiate or support an advance care planning discussion in your usual working scenario. You might like to go back and replay one or some of these videos, and / or look back at the notes you made on communication as you were watching these videos.
- Take some time to think about what types of phrases feel comfortable to you and which you might try using in the future.
We hope that you are able to choose and use the tips provided here to find the words that help you and the individuals you are working with to feel comfortable with these often difficult conversations.
Having advance care planning discussions is a skill that comes with experience and reflection. Further advice and reflection on advance care planning is available in the Resources section under Conversational tools and resources.