End-of-life phase
Definition
- The final days to hours of life, once the trajectory becomes irreversible and death is expected
- Recognising this phase ("diagnosing dying") is the pivotal clinical act - it changes the goals of every subsequent decision
- Distinct from "terminal illness" (may last months) - this is specifically the actively dying phase
Trajectories
- Applies across all life-limiting diagnoses - cancer, organ failure, frailty/dementia
- Trajectories differ: cancer often has a clearer terminal decline; organ failure (HF, COPD, ESKD) follows a fluctuating course with sudden death risk; frailty/dementia declines slowly and gradually, making the dying phase harder to pinpoint
Physiological changes of dying
- Physiological changes of the dying process
- Reduced oral intake, cachexia -> reduced drug metabolism/clearance -> simplify medication regimens
- Reduced conscious level, progressive weakness -> loss of swallow -> route of administration must change
- Peripheral shutdown, mottling, cooling extremities -> circulatory failure
- Altered respiratory pattern (Cheyne-Stokes), pooled secretions ("death rattle")
- These changes are the expected physiology of dying, not a new acute illness requiring reversal-focused work-up
Recognising the dying phase
- Clinical judgement based on the trajectory of functional decline (day-to-day or hour-to-hour deterioration), not a single sign
- Supportive features: profound weakness/bed-bound, minimal oral intake, drowsiness/reduced consciousness, difficulty swallowing medications, changes in breathing pattern
- Uncertainty is common and should be communicated honestly - avoid false precision about timeframes
- Multidisciplinary team agreement supports the diagnosis and consistent messaging to family
Once dying is recognised - reorient the entire plan
Once dying is recognised - reorient the entire plan
- Stop non-essential medications and investigations - statins, antihypertensives, bisphosphonates, routine bloods/observations that will not change comfort
- Continue/start only medications for comfort: analgesia, antiemetic, anxiolytic, anti-secretory - via subcutaneous/buccal route once swallow is lost
- Anticipatory prescribing - PRN subcutaneous medications charted in advance for pain, agitation, nausea, secretions, dyspnoea, so a dose is available without delay
- Consider a syringe driver if more than 2-3 PRN doses needed in 24h for a symptom
Communication and holistic care
- Clear, honest conversations with patient (if able) and family about what to expect
- Address spiritual/cultural/religious needs and rituals around dying
- Involve family in cares where wanted; support with information about what is normal (breathing changes, reduced intake, secretions)
- Reassess regularly - the diagnosis of dying should be revisited if the patient stabilises or improves, not treated as irreversible once made
After death
- Verification of death, sensitive communication, cultural/religious practices respected
- Bereavement support information for family
Associated problems
- Malnutrition/cachexia, pressure injury risk (immobility)
- Family/carer distress and anticipatory grief
- Moral distress in staff when goals of care are unclear or contested
Key points
- Once truly in the dying phase, reversal is not expected - the goal shifts entirely to comfort and dignity
- Not all deterioration is the dying phase - reversible causes (infection, medication toxicity, hypercalcaemia, opioid accumulation) should still be considered if the trajectory is unclear or sudden, particularly outside a known terminal illness
- Good symptom control and communication in this phase strongly shape family bereavement experience
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