TextbookPalliative CareEnd of Life Care Pathway

End of Life Care Pathway

The end of life care pathway provides a structured framework for delivering individualised care in the last days and hours of life, replacing the Liverpool Care Pathway with personalised care planning as recommended by NICE NG31.

Key Facts

The Liverpool Care Pathway (LCP) was withdrawn in 2014 following the Neuberger Review (More Care, Less Pathway) due to concerns about poor implementation NICE NG31 (2015) replaced LCP with recommendations for individualised care of the dying adult Five Priorities of Care for the dying person (Leadership Alliance for the Care of Dying People): recognise, communicate, involve, address needs of those important to them, create an individualised plan Recognising dying is a clinical decision; should be made by the senior responsible clinician and communicated to patient, family, and team Anticipatory prescribing should be in place for: pain, agitation, secretions, nausea/vomiting Regular review: at least daily reassessment; consider whether the person is improving (may need to de-escalate dying pathway) Hydration and nutrition: assess individually; not routinely started or withdrawn; based on patient benefit and wishes After death: sensitive care of the body; verification and certification of death; family support; bereavement services

Overview

Key Facts

The end of life care pathway is a framework, not a checklist. It must be delivered with compassion, individualised to each patient, and regularly reviewed.

Epidemiology

  • ~500,000 deaths/year in England
  • Approximately 30% of hospital deaths are expected
  • Most dying patients spend their last days in hospital (~46%), home (~25%), or care home (~22%)

Aetiology

The pathway applies to patients recognised as dying from any cause.

Pathophysiology

Not a pathological process. The pathway addresses the care needs of people in the last days of life.

Clinical Presentation

Recognising Dying

  • Progressive deterioration not responding to treatment
  • Reduced consciousness, bedbound
  • Taking only sips of fluid or nil by mouth
  • Reduced urine output
  • Peripheral cyanosis, mottling
  • Changes in breathing (Cheyne-Stokes, irregular)
  • Cold peripheries

NICE NG31 — What to Do

  1. Recognise that the person may be dying
  2. Communicate sensitively with the dying person and those important to them
  3. Involve the dying person and those close to them in decisions about their care
  4. Address the needs of families and carers
  5. Develop an individualised plan of care

Red Flags

  • Uncertainty about whether patient is dying (seek senior opinion)
  • Reversible cause of deterioration not excluded
  • Family disagreement about care goals
  • Patient distress not controlled
  • Staff distress or moral injury

Differential Diagnosis

ScenarioAction
Dying confirmedIndividualised care plan; anticipatory medications
Uncertain if dyingContinue active treatment AND prepare for possible dying; reassess daily
Improving after being considered dyingDe-escalate; restart appropriate oral medications and hydration

Diagnosis / Investigation

Bedside

  • Clinical assessment (as above)
  • Review all medications: stop non-essential; ensure anticipatory medications prescribed
  • Assess symptom burden
  • Assess patient's wishes and preferences
  • Spiritual/religious needs

Bloods

  • Generally NOT appropriate if patient is dying
  • Only if result would change management (e.g. correctable hypercalcaemia)

Imaging

  • NOT appropriate in dying phase

Special Tests

  • Review advance directives, ADRT, ReSPECT form
  • Verify DNACPR status

Management

Non-pharmacological

  • Individualised care plan: documented within hours of recognising dying
  • Communication: honest, compassionate conversations with patient and family
  • Comfort care: mouth care (every 2 hours), eye care, skin care, repositioning
  • Environment: quiet, private, comfortable; unrestricted visiting; personal belongings
  • Stop non-essential: monitoring, routine observations, blood tests, inappropriate medications
  • Spiritual care: chaplaincy, religious observances as wished
  • Family support: keep informed, involve in care, prepare for death
  • After death: verification of death, care of the body, death certification, family support, bereavement services

Pharmacological

  • Anticipatory prescribing (PRN medications available):
    • Pain: morphine 2.5-5mg SC PRN 1-hourly
    • Agitation: midazolam 2.5-5mg SC PRN 1-hourly
    • Secretions: hyoscine butylbromide 20mg SC PRN 1-hourly (or glycopyrronium 200mcg)
    • Nausea: haloperidol 0.5-1mg SC PRN or levomepromazine 6.25mg SC PRN
  • Syringe driver: if regular SC doses needed
  • Review hydration: clinically assisted hydration (IV/SC) assessed individually; not routinely started or stopped
  • Stop non-essential medications: antihypertensives, statins, anticoagulants (unless for symptom control), PPIs, supplements

Surgical/Interventional

  • Not appropriate in dying phase
  • Palliative procedures (urinary catheter for retention) may be appropriate for comfort

Referral Criteria

  • Complex symptoms: specialist palliative care
  • Family unable to cope: additional support, social services
  • Staff distress: debrief, peer support
  • After death: bereavement services

Prognosis

  • Median survival after recognition of dying: 1-3 days
  • Prognostication in last days is difficult but important for planning
  • Good end of life care improves quality of death for patient and bereavement outcomes for family
  • Approximately 70% of patients prefer to die at home; achieving this requires forward planning

Other Relevant Information

Neuberger Review Findings (2013)

Issue with LCPLesson
Tick-box mentalityIndividualise care
Poor communicationCommunicate honestly and sensitively
Inappropriate withdrawal of food/fluidAssess individually
Premature diagnosis of dyingRegularly reassess; accept uncertainty
Lack of senior oversightSenior clinician makes dying diagnosis

NICE NG31 — Priorities for Care of the Dying Person

Priority
1. Recognise that the person may be dying
2. Communicate sensitively with the dying person and those important to them
3. Involve them in decisions
4. Address the needs of families
5. Create an individualised plan
End of Life Care Pathway Revision Notes | MedPrep