Key Facts

Good end of life care is a core competency for all doctors. It requires clinical skill in recognising dying, managing symptoms, and communicating sensitively with patients and families.

Epidemiology

• ~500,000 deaths/year in England

• 80% in people over 65

• Most common causes of death in elderly: dementia, heart disease, cerebrovascular disease, respiratory disease, cancer
• Place of death: hospital ~46%, home ~25%, care home ~22%, hospice ~6%

Aetiology

End of life care is needed for patients dying from any cause, including:

• Cancer (predictable trajectory)
• Organ failure: heart failure, COPD, renal failure (unpredictable trajectory with acute exacerbations)
• Frailty/dementia (gradual decline)

Pathophysiology

• Dying is a physiological process: progressive organ failure
• Common symptoms in the last days: pain, agitation, respiratory secretions, nausea, dyspnoea
• Reduced consciousness is normal in the dying process
• Cessation of eating and drinking is normal

Recognising Dying

• Progressive deterioration despite treatment
• Bedbound, drowsy, minimal oral intake
• Reduced urine output
• Peripheral cyanosis, mottling
• Altered breathing pattern (Cheyne-Stokes, irregular)
• Cold peripheries
• Changes in consciousness

Common Symptoms in Last Days

• Pain (present in ~50%)
• Agitation/restlessness (terminal agitation)
• Respiratory secretions ("death rattle")
• Nausea and vomiting
• Dyspnoea
• Dry mouth
• Anxiety and distress

Red Flags

• Reversible cause of deterioration not identified (infection, hypercalcaemia, medication toxicity)
• Uncontrolled symptoms despite appropriate prescribing
• Patient/family distress requiring specialist input
• Disagreement within clinical team or between team and family

Bedside

• Clinical assessment of dying (NICE NG31)
• Symptom assessment (verbal or non-verbal tools if unable to communicate)
• Review current medications (stop non-essential; ensure comfort medications prescribed)
• Assessment of patient's wishes and preferences
• Spiritual/religious needs assessment

Bloods

• Generally not appropriate in last days of life unless result would change management
• May check if reversible cause suspected (calcium, glucose)

Imaging

• Generally not appropriate in last days of life

Special Tests

• Review advance directives, ADRT, DNACPR, LPA
• Holistic needs assessment of patient and family
• Bereavement risk assessment

Non-pharmacological

• Recognise dying: communicate with patient and family
• Individualised care plan: document within hours of recognising dying
• Comfort measures: mouth care, positioning, pressure care, skin care
• Environment: quiet, private, comfortable; unrestricted visiting
• Communication: honest, compassionate; avoid false reassurance; explore fears and concerns
• Spiritual care: chaplaincy, religious observances
• Family support: information, reassurance, bereavement support after death
• Stop unnecessary interventions: monitoring, routine observations, blood tests, IV fluids (unless for symptom management)

Pharmacological (Anticipatory Prescribing)

• Pain: morphine sulphate 2.5-5mg SC PRN 1-hourly (reduce dose if opioid-naive, elderly, or renal impairment; 1-2.5mg)
• Agitation/restlessness: midazolam 2.5-5mg SC PRN 1-hourly
• Respiratory secretions: hyoscine butylbromide 20mg SC PRN 1-hourly or glycopyrronium 200mcg SC PRN
• Nausea/vomiting: haloperidol 0.5-1mg SC PRN (or cyclizine 50mg SC PRN; levomepromazine 6.25mg SC PRN)
• Syringe driver (CSCI): when regular SC doses needed; typically morphine + midazolam + hyoscine butylbromide ± haloperidol over 24 hours (check local compatibility charts)
• Clinically assisted hydration: assess individually; not routinely started/continued if patient is dying and not distressed by thirst

Surgical/Interventional

• Generally not appropriate in end of life care
• Palliative procedures (e.g. drainage of symptomatic effusion, urinary catheterisation for retention) may be considered for symptom relief

Referral Criteria

• Complex symptoms: specialist palliative care (hospice, hospital palliative care team)
• Psychological distress (patient or family): psychology, counselling
• Complex ethical decisions: clinical ethics team
• Bereavement support: bereavement services

• Recognising dying is a clinical judgement; prognostication is difficult but important
• Surprise Question: "Would I be surprised if this patient died in the next 12 months?" — identifies those who may benefit from palliative approach
• PPS (Palliative Performance Scale) and PPI (Palliative Prognostic Index): validated prognostic tools
• Median survival once last days of life recognised: typically 1-3 days
• Good end of life care improves quality of death for patient and bereavement outcomes for family

Anticipatory Medications for Last Days of Life

NICE NG31 — Priorities for Care of the Dying Person