Facilitate advance care planning conversations
Once a person is ready to engage, advance care planning conversations will help prepare them and their agent(s) to make decisions about health and personal care in the future. They will also enable you to offer care that aligns with their values and goals.
Where to focus conversations by population
Advance care planning conversations can be considered for three distinct populations. For each, a slightly different approach is required.
Healthy adults
Conversations will be more hypothetical and involve planning for unexpected events (e.g. trauma, pre-op for patients with good expected outcomes).
People living with illness
- Conversations will be an opportunity to focus on illness understanding and learning about living with the illness or condition.
- Start getting people aware of the progressive nature of their illness, before they are very sick.
- As this is earlier in the disease trajectory, titrate prognostic information to their level of readiness.
People living with advanced illness
- Illness understanding and information become even more important because there is more information about the likely trajectory of the illness or condition and what decisions might be needed in the future.
- Conversations may be more specific and might involve wishes, beliefs and preferences about specific treatments (e.g. ICU admission, intubation, BiPAP etc.).
- Conversations about end-of-life wishes become more important.
Conversation prompts
Questions to ask everyone
- Have you completed a personal directive and appointed an agent(s)?
- Who is your agent(s)? Do they know your wishes?
- Talk about the person’s overall values and wishes:
- What brings you joy and makes your life meaningful?
- If you were to get very sick, what would matter most to you?
- What should I know about you as a person to give you the best possible care?
Additional questions for people living with illness
There are six additional domains to consider exploring when facilitating an advance care planning conversation with someone who has an illness diagnosis. Let people know in advance that you would like to talk about their values and treatment preferences and invite them to bring their agent, family member and/or friend to participate.
- What do you know or understand about your health?
Why talking about illness understanding is important: There is evidence that up to 70% of seriously ill people do not understand their disease is incurable or progressive.
- What information do you need?
Why providing information is important: This is an opportunity to meaningfully meet a person’s information needs. This includes paying attention to health literacy, coping mechanisms and how much information the person wants to receive.
- What is most important to you going forward?
Why talking about values is important: There is evidence that values-based conversations, rather than treatment-focused ones, are more likely to positively impact patient outcomes.
- What concerns or worries do you have about your illness?
Why talking about worries and fears is important: it offers a different way for people to express values.
- What would you be willing to go through for the possibility of more time?
Why talking about trade-offs is important: it helps explore the conditions under which a person would want treatments and what is most important to them.
- What’s most important to you when you are near the end of life?
People may have specific wishes about care settings, treatments or other things that would make death more meaningful or peaceful. Not everyone will be ready to talk about end of life.
These questions come from the Serious Illness Conversation Guide. For more information see the resources section.
Discussing specific treatments
During advance care planning conversations, people may express preferences regarding specific treatments (e.g. feeding tubes, ventilators etc.).
When they do, efforts should focus on the patient’s values and the context in which they might find a specific treatment acceptable or not.
Explore why the person feels this way and focus on identifying their underlying values.
- Have they seen someone else have it?
- Do they worry that it will leave them in a state they wouldn't find acceptable?
For people who are in the latter stages of an illness, treatments as well as their benefits and burdens become less hypothetical. Conversations can become more focused and can help you and their agent(s) develop a clear understanding of their wishes