Finding the words: Tips for having necessary discussions
At the end of Unit 5, you will:
- understand the importance of timing when having an advance care planning conversation with residents and family members
- be aware of some conversation prompts and key phrases which can be used when having advance care planning conversations
- Reflective activity: if you see a pencil throughout this section, take a few minutes to think about each question and if helpful, write down your answers.
- If you have previously had an advance care planning conversation with residents and family members, what did you find particularly important in relation to the timing of your discussion and your choice of words?
- If you have not yet had an advance care planning conversation with residents and family members, what do you think might be important in relation to the timing of the discussion and your choice of words?
- Does your care home have a policy on when advance care planning should take place? For example, when a resident first joins the care home.
The timing of an advance care planning conversation is crucial. These are important conversations to have and it is necessary to find the optimum time for these discussions, for example upon admission to the care home or after a hospital admission.
Below are some tips about timing that you might find helpful:
- offer to discuss advance care planning as early as possible and at a convenient time for the resident and family members
- the desire to know about, and understand, advance care planning will differ between people, but may also change for an individual over a period of time – everyone is different
- a person’s readiness to engage in an advance care planning discussion may depend on a number of factors, for example their frame of mind and how they are feeling on the day
- it is important to be sensitive when planning for, and introducing the subject of, advance care planning
- it is also important to recognise there are times when an advance care planning discussion may become imperative, for example, acute physical illness including COVID-19
- when making a decision about appropriate timing with residents and family members, it can be useful to tune into how they are feeling and what is going on in their lives at that time
- some people may not want to talk about advance care planning and may not want to have an Advance Care Plan
Choice of words
When having advance care planning discussions with residents and family members, your choice of words is important. Try and talk to residents and their family members using language they will understand. Where possible, avoid medical or technical terms to prevent misunderstandings and support the shared decision-making process. This may not be an easy conversation for a resident or family member, so it is important to be supportive and to choose phrases which show that you empathise with them.
Advance care planning can be a difficult subject. Residents and family members may get 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, residents and family members feel much better as a result of having these conversations.
Preparing for advance care planning conversations using a structured approach will help facilitate these discussions. The RED-MAP guide described below is a 6-step approach to care planning discussions with conversational prompts that can be used in practice.
The RED-MAP resource was developed by Dr Kirsty Boyd, Macmillan Reader in Palliative Care at the University of Edinburgh, and the accompanying video was produced in collaboration with the Royal College of Physicians and Surgeons of Glasgow.
Talking about advance care planning with RED-MAP
Let us talk about why planning ahead is so important
Planning these conversations in advance ensures everyone is prepared, and the right people are involved. Making a plan helps residents and family members to think about care and what is important to them. It is a good idea to talk about what might happen if the resident gets unwell. This could be from a health problem or illness they have already. It might be a new illness such as COVID-19. We can make plans just in case.
- Can we talk about your health and care?
- Who should be involved?
- We would like to hear about what is important to you, and talk about what we can do to help you.
- Do you have any kind of care plan or power of attorney already?
It would help to hear what you know about your health and think might happen
People have different things they want to talk about. The resident and family members may have thoughts, ideas, questions or worries about what might happen if they become unwell. Encourage them to ask about anything they want to know or are worried about. Give reassurance that you can help them to make a care plan now, if they are ready.
- What do you know about your (loved one’s) health?
- What do you want to ask or tell me?
- What has changed?
- What do you think might happen?
- Have you thought about what the COVID-19 situation might mean for you?
There are things we know about your health, and things we are unsure about
It may be helpful to explain that people who live in care homes often need help with day-to-day living. You can reassure the resident and family members that you are doing your best to help, but it is possible they may get unwell at some point. You can explain that some treatments may not work, or the resident might not want them, and that is why advance care planning is important.
The following tips might help you:
- share information tailored to people’s understanding and how they are feeling
- explain what we know in short chunks with pauses, to check for people’s reactions and questions
- acknowledge and share uncertainty
- use clear language that supports shared decision-making.
- What we know is...
- We do not know...
- We are not sure about…
- Do you have questions or worries we can talk about?
We would like to know what is important for you
You can explain that knowing what is important to the resident and their loved ones, helps you to provide the best possible care. This information is put into the Advance Care Plan so that you know how to care for them.
- What is important to you and your family?
- How would you like to be cared for?
- Is there anything you do not want?
- What would she say about this situation, if we could ask her?
Let us talk about what we can do to care for you, and things that may not help
Talk about realistic, available options for treatment, care and support for the resident. Be honest and clear about what can help or will not work. The options available may depend on the place of care.
- What we can do is...
- Options that can help are….
- This will not help because....
- That does not work when…
- Going to hospital has benefits and risks so can we talk about what that might mean for you?
- Can I ask if you know anything about cardio-pulmonary resuscitation or CPR? CPR is treatment to restart the heart or breathing. CPR does not work when a person is in very poor health or dying, so it is better for us to plan good care.
Use available forms and online systems to record and share Advance Care Plans
It is important to communicate how Advance Care Plans are made and shared. You can explain that the Advance Care Plan will be kept in the care home, and securely shared with the resident’s GP practice and other relevant care professionals. Mention that the plan can be changed at any time. Reinforce that the resident and family members can ask questions at any time, and also talk to other staff in the care home or at the GP practice.
- Let us plan ahead for when/if....
- Making plans for the future helps people get better care.
Language to avoid
It is important to avoid language that can:
- make people feel confused, for example talking about withdrawing treatment
- make people feel deprived of treatment and care, for example talking about ‘ceilings of treatment’
- cause unrealistic expectations, for example do you want/want your loved one to have resuscitation.