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- The Liverpool Care Pathway (LCP) was withdrawn in 2014 following the Neuberger Review (More Care, Less Pathway) due to concerns about poor implementation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- Hydration and nutrition: assess individually; not routinely started or withdrawn; based on patient benefit and wishes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
- Recognise that the person may be dying
- Communicate sensitively with the dying person and those important to them
- Involve the dying person and those close to them in decisions about their care
- Address the needs of families and carers
- 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
| Scenario | Action |
|---|---|
| Dying confirmed | Individualised care plan; anticipatory medications |
| Uncertain if dying | Continue active treatment AND prepare for possible dying; reassess daily |
| Improving after being considered dying | De-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 LCP | Lesson |
|---|---|
| Tick-box mentality | Individualise care |
| Poor communication | Communicate honestly and sensitively |
| Inappropriate withdrawal of food/fluid | Assess individually |
| Premature diagnosis of dying | Regularly reassess; accept uncertainty |
| Lack of senior oversight | Senior 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 |