Advance care planning conversations

Department of Health and Aged Care (DOHA), 2021Mullick, 2013

Advance care planning usually takes place over a period of time rather than in a single session; it may include members of a patient’s family or other people the patient would like involved. It may take place in various settings; see Advance care planning in different settings.

Ideally, discussion about advance care planning for a patient with life-limiting illness is undertaken in the context of a trusted relationship between the patient and their healthcare professional. Many patients expect their healthcare professional to raise the subject of advance care planningScott, 2013.

Note: Many patients expect their healthcare professional to raise the subject of advance care planning.

General practitioners are well-placed to have conversations about advance care planning; through trusted relationships with their patients, they can introduce the subject of advance care planning in the nonacute phase of a patient’s illness, when it is easier to talk about these mattersMitchell, 2014.

It can be difficult to know the right time to initiate discussions about advance care planning. Potential triggers include:

Various strategies are available to help identify patients with palliative care needs who may benefit from advance care planning (see When can palliative care be introduced?).

Talking about end-of-life care can be difficult and emotional for the patient, even those not imminently dying. Healthcare professionals can find it difficult to approach these discussions; sensitivity and empathy are requiredScott, 2013. For guidance on advance care planning discussions and follow-up, see Guidance for advance care planning discussions and follow-up. For further advice on discussing sensitive issues, see Communicating with and supporting patients with palliative care needs and Decision-making and ethical challenges in palliative care.

Figure 1. Guidance for advance care planning discussions and follow-up

Conversations about advance care planning will vary and may not follow the steps outlined below. Before starting discussions, check whether the patient already has an advance care plan.

Preparation

Assess the patient’s willingness to discuss advance care planning.

Ask if they would like to have others involved in the conversation (be aware of cultural considerations related to decision-making).

Allow enough time; these are sensitive discussions that should not be rushed.

Conversation

Explain the potential benefits of advance care planning, and that a written plan only comes into effect if a person loses decision-making capacity.

Ask what the patient already knows about their health status and prognosis.

Provide specific information about the patient’s medical condition(s) and what may happen in future, including the expected impact of the condition(s), prognosis, dilemmas that may arise, and possible treatment options.

Offer realistic hope and use positive language; avoid medical jargon.

Be honest and clear when discussing limitations to treatment and care, and explain the choices available, even though these are often limited. It is not helpful to offer choice when none really exists.

Acknowledge the patient’s emotions; watch for signs of discomfort and offer to (or) stop the conversation if necessary. Check their understanding along the way.

Explore the patient’s beliefs, values, fears and concerns, and the type of health care they want in future. Assist them to clarify their goals of care.

After this general framework is established, discuss their preferences for specific interventions such as cardiopulmonary resuscitation, ventilation, feeding, hospitalisation and place of death (as applicable).

Encourage the patient to identify a substitute decision-maker.

Completing the conversation and follow-up

Make a follow-up appointment to continue the discussion if needed.

Document the conversation and encourage or assist the patient to record their advance care plan.

Reassure the patient that they can change or revoke their plan while they have the capacity to do so.

Encourage the patient to make their preferences known to those close to them, and to distribute their plan to relevant family members, carers and healthcare professionals.

Assist the patient to communicate the information to relevant healthcare professionals, with permission.

Review the plan periodically or when goals of care shift or disease progresses.