Advance Care Planning - How to Start
Encourage the patient to reflect on their condition
e.g. You haven't been so well over the last few months [weeks].
Explore patient's understanding of their terminal illness
e.g. Are you aware that this [heart failure] is a condition that tends to get worse over time?
Introduce the idea of planning ahead
e.g. Some people find it is helpful to think about the future; there may be things you want to plan for, or choices you would like to discuss about treatment when (or if) things get worse.
If they haven't already given you a clue, ask whether they want you to continue
e.g. Do you think this is something you would like to discuss some more?
Explain what sort of things they may want to discuss
e.g. Some people want to think about making provision for their family, or there may be some treatments you would not want to happen to you, such as an operation. Or there may just be some wishes you want to express, such as not wanting to go back into hospital.
Based on the reaction so far, choose what you do next:
- Stop if the patient does not want to continue (see below). Offer the opportunity to discuss at a later date if the patient wants.
- Offer a written information leaflet, and more time to consider.
- Offer another person to follow up the discussion e.g. the palliative care nurse / specialist nurse in clinic.
- Continue with discussion, perhaps using the Record of Advance Care Planning form
When to persist?
If the patient indicates at any stage that they do not want to think more about their future care, it is normally appropriate to move on. However, there are some circumstances when it may be appropriate to 'push' a bit further:
- If the patient has young children, and no spouse who would automatically take over their care;
- If the patient is likely to lose mental capacity in the near future e.g. from a brain tumour
- If an acute complication is likely, which would require an urgent decision in which the patient may not be able to participate e.g. acute haemorrhage, cardiac arrest?
If the patient clearly does not wish to discuss further, consider asking about involving others in decisions:
e.g. I appreciate you may not wish to dwell on this, but we would want to do the right thing for you. Is there someone else [like your husband/wife] you would like us to involve if you aren't able to make decisions for yourself?