๐งญ When to initiate advance care planning
Advance care planning (ACP) is a voluntary process of conversation in which a person thinks about, talks about and records what matters to them for their future care โ so that their wishes can guide decisions if they later lose the capacity to make or express them. It is not a one-off form but a series of conversations over time, and the person can change their mind at any point.
Crucially, ACP is not only for the dying. It should be offered to anyone at risk of losing capacity โ through a progressive life-limiting illness such as cancer, heart failure, COPD or dementia, through advancing frailty and multimorbidity, or through a condition causing fluctuating capacity. The practical trigger in primary care is the Gold Standards Framework โSurprise Questionโ: if the answer is โno,โ start the conversation.
| Identification trigger | What to look for |
|---|---|
| The Surprise Question | โWould you be surprised if this patient died in the next 12 months?โ If no โ consider offering ACP and adding to the practice palliative / supportive care register. |
| General indicators of decline | Progressive weight loss, falling performance status, increasing dependence, recurrent unplanned admissions, or a point where โno further active treatmentโ is appropriate. |
| Specific clinical indicators | Disease-specific markers โ advanced cancer, NYHA class IV heart failure, severe/oxygen-dependent COPD, advanced dementia or frailty, end-stage renal or liver disease. |
The three classic illness trajectories help frame timing: rapid, fairly predictable decline (e.g. cancer); erratic decline with acute exacerbations (e.g. organ failure); and gradual, prolonged dwindling (e.g. frailty and dementia). Tools such as the Gold Standards Framework, the SPICT or the AMBER care bundle support identification. Done well, ACP follows the 2022 Universal Principles: the person is central, conversations focus on what matters to them, outcomes are agreed by shared decision-making, the plan is shareable and reviewable, and anyone may speak up if these are not followed.
Source: NICE NG142 ยท NICE NG108 ยท Gold Standards Framework ยท Universal Principles for Advance Care Planning
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