Navigating the conversation

Don’t wait for the patient to bring it up – they may not know it’s an option to express preferences for the future, or they may be thinking about it but aren’t sure whether or how to bring it up.

When patients are not on the path of advanced disease, it is much easier for you and them to discuss hypothetical scenarios. Once the conversation is initiated, it becomes easier to continue addressing future preferences.

You can still explain that future treatments can continue to be curative, but some patients do transition to supportive care as part of their treatment pathway. It is important that patients are aware of this in order to manage expectations.

The rapid decline seen with some haematology patients is reported to delay the identification and communication of transition from a curative to a palliative focus of care.

Below are some examples of questions that might help you initiate and open the conversation.

Talk about the future. Ask questions such as:

• "I'm interested to know how you feel things are going."
• "What do you understand about the disease and how it can progress?"

Refer to previous discussions. Asking patients if they have already had any discussions with other members of the team or their family about future care can itself be the conversation starter. You could ask:

• "Have we asked you about any of your preferences for your future care?"
• "I see we have previously recorded some of your preference for future care, can we revisit these to check they are still the same?"

Acknowledge fear. Ask questions such as:

• “I understand you feel worried about successive treatments not working in the future – would it be helpful to discuss what we would need to consider at that time?”
• “I understand you are worried about your current situation, which is completely natural. Would it help to talk about the treatment options that are used in critical situations? It’s far better to discuss this now while you are well, in case in an emergency you can't tell us what you want.”

If patients want to include their family in the advance care discussions, then it may be helpful to initiate this as early as possible. Document this clearly.

• Explain advance care planning by giving real examples to patients. Often if patients haven't considered advance care planning yet, then they don't really know what sorts of things they may wish to think about (e.g. advance decisions to refuse treatment, appointing a Lasting Power of Attorney).
• Listen, explore and validate patient concerns. It is normal for patients to be thinking about their future.
• Allow patients time to think during the consultation.
• You can still continue to confirm hope for treatment to work alongside these conversations.
• Remember, you aren’t trying to do it all in one conversation. Just opening the conversation is a good step, then the topic can be explored and revisited over time.
• Listen out for cues that patients may want to discuss curative and palliative care in parallel, if both are possibilities.

• What do you consider most important in your life?
• When you think about the future, what matters most to you?
• What are the things that we need to know about you?
• If you become seriously unwell, what can I do to support you?
• If you become seriously unwell, are there any treatments you would not want? We can talk more about what these treatments are.

• Summarise discussion points to check understanding and that everybody is clear.
• Affirm your commitment to support the patient in the best way possible.
• Offer follow-up if the patient needs time to think or speak to their family.

> Advanced care planning guidance