Recognising approaching end of life, deterioration and uncertainty

NICE NG142 recommends systems to identify adults who may be approaching the end of life so that planning, support and coordination can begin. Identification may be prompted by progressive functional decline, increasing frailty, recurrent unplanned admissions, escalating symptom burden, weight loss or reduced intake, disease-specific deterioration, or clinician concern. These are triggers for holistic review, not proof that death is imminent.

Prognostic tools can support thinking but should not replace clinical judgement. Illness trajectories are heterogeneous, especially in frailty, heart failure, COPD, dementia and neurological disease. The practical purpose of recognition is to create opportunities for better care before a crisis rather than to produce an exact date of death.

NICE NG31 explicitly recognises that it can be difficult to know whether a person is entering the last days of life and that a person may deteriorate, stabilise or improve. A last-days plan should therefore include review for signs of recovery or stabilisation. This is a central safeguard against diagnostic momentum.

Once a person is labelled "dying", teams can unconsciously stop looking for treatable discomfort or reversible contributors such as urinary retention, constipation, medication toxicity, infection, hypercalcaemia or dehydration. Whether investigation or treatment is proportionate depends on goals, likely benefit and burden, but the possibility should still be considered.

Clinicians should be honest about what is known and what remains uncertain. Helpful communication can combine concern with a plan: "I am worried that time may be short. We cannot be certain exactly how things will change. We will look for reversible problems, keep symptoms controlled, and review if there are signs of improvement or further deterioration." This is usually safer than false precision.

Uncertainty is not a reason to postpone all planning. A patient may benefit from discussing priorities, emergency plans, preferred place of care and who should be contacted even when prognosis is uncertain. Planning can be conditional: what the team will do if the person improves, remains stable or deteriorates.

A label without a care response has little value. Once concern is recognised, teams should review symptoms, medicines and burdensome interventions; clarify goals; identify carers; check existing future-care or emergency records; consider anticipatory medication where appropriate; and coordinate information across settings. NICE NG142 places strong emphasis on coordination and information sharing.

For someone thought to be in the last days, individualised care should include communication, symptom review, hydration and mouth care, medication review and regular reassessment. In Wales, current All Wales Care Decisions material is specifically for the last days of life and should not be used prematurely.

The first error is under-recognition: waiting for certainty before discussing future care. The second is over-certainty: declaring that someone is dying and allowing that label to close down appropriate assessment. Good practice sits between these extremes. Recognise risk early, communicate uncertainty, plan ahead and keep reviewing.

| Step | Question |

| --- | --- |

| Notice change | What has changed in function, symptoms, admissions, intake or disease trajectory? |

| Assess | Are there reversible or remediable contributors consistent with the person's goals? |

| Discuss | What is known, what is uncertain, and what matters to the person? |

| Plan | What support, anticipatory care and coordination are needed now? |

| Review | Is the person deteriorating, stable or improving? |

| Possible indicator | Safe interpretation |

| --- | --- |

| Repeated unplanned admissions | Prompt broader review; not proof of imminent death. |

| Reduced intake and weight loss | Assess cause, reversibility and overall trajectory. |

| Increasing frailty/function loss | Consider palliative needs and future planning. |

| Clinician concern | Use as a prompt to reassess and communicate, not as a stand-alone prediction. |

1. A patient with advanced heart failure has repeated admissions, but future-care discussion is deferred because no one can predict whether death will occur within six months. Uncertainty should not prevent planning.

2. A frail inpatient is labelled dying after one poor day; the next day they improve, but the diagnosis is not reconsidered. Reassessment is required.

3. A person is recognised as likely to be in the last days, yet no symptom plan, family communication or medication review follows. Recognition should trigger action.

• Look for patterns of deterioration rather than relying on one marker.
• Consider reversible contributors in the context of goals and treatment burden.
• State uncertainty honestly and avoid unsupported exact survival estimates.
• Check existing future-care and emergency plans.
• Create a practical action bundle after recognition.
• Reassess for stabilisation or improvement.