Advance care planning discussions
By the end of unit 3, you will:
- Be aware of informal and formal advance care planning discussions
- Be aware of cues suggesting that an individual is ready for these discussions so that you can either proceed with an advance care planning discussion yourself, or help direct the individual to the support they need
- Have knowledge of how to prepare for an advance care planning discussion
- Understand how to support an individual and family / carers during an advance care planning discussion
NB: Whilst not all health care providers will be directly involved in advance care planning discussions, it is valuable for all to be aware of the processes involved.
Previous experience with advance care planning
- Reflective activity: You may have a little or a lot of experience of advance care planning. Whichever is the case, take a few minutes to reflect on how you would complete an advance care plan, or direct an individual to further support in advance care planning. You might want to think about the following:
- At what stage of an individual’s care should advance care planning discussions take place?
- What advance care planning processes or forms are used in your organisation? Are these common to, or shared across local health and social care organisations?
- What challenges might need addressing when completing advance care planning during exceptional times, such as the current COVID-19 crisis? For example, how might staff shortages or rapid deteriorations in an individual’s health need approaching differently?
- How might you respond if an individual unexpectedly mentioned thoughts or concerns about their future care towards the end of life?
- How might you prepare for a planned advance care planning discussion?
Informal (unplanned) advance care planning discussions
Advance care planning discussions can be ongoing and sometimes happen informally when you, the health care provider, are not fully prepared to have the discussion.
Individuals will feel ready for advance care planning discussions at different times. They may choose to approach these conversations with specific healthcare providers, for example those they trust the most. As a result, advance care planning conversations can sometimes happen in informal and unplanned ways, at a time that may not have been expected. If an individual and their family/carers start a conversation with you, you may feel unprepared or anxious about this. You may worry that you are not the right person for them to be talking to, or that it is not part of your role.
Some of this training is about recognising that the conversation is happening, and that somebody is trying to talk about the end of their life. Even if you are not the person to follow the discussion through to completion, you may be the person to direct an individual to the support that they need.
It is important to recognise these informal conversations, as they provide insight into an individual’s wishes, and can be the trigger for a more formal advance care planning discussion. There will be occasions when these informal conversations will need to be discussed with a more senior member of your team or with someone more directly involved in the individual’s care, so that a more formal advance care planning discussion can take place. You can discuss this with the individual and obtain their permission to do this.
Timing of advance care planning conversations and picking up cues
There are several cues that might indicate that ‘now’ is a good time for an advance care planning discussion with an individual. Issues of timing are revisited in Unit 5, ‘Finding the words: Tips for having advance care planning discussions’, but we have an introduction in the video below, where Dr Philomena Swarbrick talks about issues of timing, picking up cues and communication in advance care planning.
- Reflective activity: From the video below, note down some of the things that Philomena says about timing. Think about some of the ‘cues’ that you have come across from individuals that have led to a discussion about advance care planning. Keep these notes to refer back to when we revisit issues of timing in Unit 5.
Note down any extra ideas about communication that Philomena suggests and add them to those you made from the earlier videos in Units 1 and 2.
Formal (planned) advance care planning discussions
One approach for a formal conversation about advance care planning is a planned meeting with the individual and their family / carers. Think about the people who might be involved in this discussion as noted in Unit 2. The meeting may be a case conference, or could be during a planned home visit in the individual’s home, an outpatient clinic or inpatient setting, or it may take place remotely by phone or video call. The implications of remote discussions are addressed later in this unit.
The following steps explain how a planned, formal advance care planning discussion can be undertaken.
You can download these steps as a PDF for use as a check list if required.
Check before the meeting whether the individual already has an advance care plan in place, has previously considered their preferences and wishes, and/or has discussed these with family / carers. If so, this should form the basis of your discussion to ensure a personalised approach to shared decision making.
It is also important to encourage the individual involved and family / carers to have an advance care planning discussion before the meeting. You could suggest they consider some of the topics and documents covered in Unit 2 and offer any relevant written information to read before the meeting takes place. The following ‘Planning Ahead’ tool may help them to start thinking about these issues and what is important to them.
Introducing the discussion
- At the meeting introduce yourself and your role and thank those present for attending.
- Describe how you work with the wider team(s) who are also involved in the individual’s care and support.
- Establish how each person would like to be addressed throughout the meeting
- Discuss with the individual and their family / carers whether they know what an advance care plan is, and why it is important. Some people may be confused by this term, so it is important to clarify what advance care planning is using language they are likely to understand. Issues around finding the words for advance care planning discussions are covered in Unit 5.
- Establish and agree ground rules for the meeting, emphasising that all comments and viewpoints will be acknowledged and respected and indicate the length of the meeting – Up to 60 minutes is usually sufficient.
- Offer the opportunity for any questions or points of clarity
Purpose of the meeting
- Outline and confirm the purpose of the meeting, which is to support the individual and their family / carers to discuss wishes and preferences for care to enable a personalised future care plan to be completed. (If possible, the plan should be written-up following conversation rather than during so you can focus on facilitating the discussion)
- Identify any particular concerns or questions that the individual or family / carers may have – prioritise these and confirm which can be dealt with at the meeting.
- Clarify if any specific decisions need to be made
Determine what is already known
- Has the individual previously considered their own preferences and wishes and have these been shared with their family / carers?
- If an advance care plan is already in place, ensure this forms the basis of the conversation and consider that it may need reviewing
- If necessary, provide further information on the individual’s current plan of care
Advance care plan
- Talk through each component outlined in Unit 2 of this training as necessary, and provide information and support to allow the individual to make informed decisions about each area including statement of wishes and preferences; emergency care planning; mental capacity; best interests decision making. Quite often these decisions involve shared decision making with the individual and the health care provider
- During the discussion, check in with the individual and family / carer(s) to see whether the discussion is valuable and is meeting their needs. If appropriate, consider taking a short break to give those present time to digest information, and then allow some time to re-focus.
Concluding the discussion
- Summarise areas of agreement, disagreement, decisions, outstanding decisions and the ongoing plan for future care.
- Confirm agreement about the future plan of care from those involved and emphasise the positive outcomes.
- Offer a final opportunity for questions, comments and concerns – signpost to other resources they can look at for further information. Some resources are provided at the end of this training.
- Check consent: Consent to share information is necessary so identify from the individual who information can be shared with and ensure this is recorded
- Thank everyone for attending.
- Record and share the advance care plan – the process for this is outlined later in the following unit
In case of distress: It is helpful to consider different support protocols you could use in case anyone attending the meeting becomes distressed during advance care planning conversations. We have provided an example of a distress protocol you could use.
Guidance for communicating at a social distance
The advance care planning meeting may take place remotely, so it is important to consider how to effectively communicate effectively when discussing emotional or potentially upsetting topics via phone or video call.
You might wish to consider the following inVEST guidelines when conducting the meeting in a virtual environment:
Use video technology wherever possible such as Zoom, MS Teams calls which can happen via a laptop, smart phone or computer. This will allow those involved to observe your body language, and for you to make attempts at eye contact and give supportive expressions.
Give emotional responses and reassurances, using nods or verbal agreements to demonstrate empathy.
Make sure the conversation is specific to make it feel individualised and personal despite the distance. Address those at the meeting using the names agreed at the beginning of the meeting and refer to details that are particular to their situation.
Make sure you use technology which is accessible to all attending the meeting and discuss which online meeting platforms they might be most familiar with or comfortable using.
- Recording advance care plans: Following an advance care planning discussion, you will need to record the decisions and plans that have been made for the individual’s care. Details of how this can be done are covered in the next unit, Unit 4.