End of Life Care (Last Days of Life)

1. Clinical Overview

Summary

End of Life Care encompasses the multidimensional care provided during the last days to hours of life when a person is recognised as approaching death. This critical phase represents a transition from disease-modifying or life-prolonging treatment to a focus on comfort, dignity, symptom control, and psychosocial-spiritual support. [1,2]

The modern approach to end-of-life care in the UK is guided by the "Five Priorities for Care of the Dying Person" framework, developed following the Neuberger review of the Liverpool Care Pathway in 2014. This individualised, person-centred approach emphasises early recognition of dying, sensitive communication, shared decision-making, holistic symptom management, and support for families and carers. [3]

End-of-life care is a core clinical competency across all medical specialties, requiring integration of clinical assessment, pharmacological expertise, communication skills, ethical reasoning, and cultural sensitivity. Poor end-of-life care causes preventable suffering and lasting psychological harm to bereaved relatives. [4]

Key Principles

Why This Matters Clinically

• Prevalence: Over 500,000 people die in England and Wales annually; most deaths are predictable and follow progressive illness. [5]
• Suffering Prevention: Evidence-based symptom control can eliminate or substantially reduce pain, dyspnoea, and distress in 90% of dying patients. [6]
• Family Impact: Quality of end-of-life care significantly affects bereavement outcomes and risk of complicated grief. [4]
• Resource Utilisation: Appropriate care planning reduces emergency admissions and intensive interventions that do not align with patient wishes. [7]
• Medicolegal: Poor end-of-life care is a frequent source of complaints and negligence claims. [8]

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2. Prognostication and Recognition of Dying

The Challenge of Prognostication

Accurate recognition that a patient is entering the last days of life is fundamental but challenging. Premature diagnosis of dying (as occurred in some LCP cases) can lead to inappropriate withdrawal of treatment; delayed recognition results in inadequate symptom control and unmet needs. [3]

Prognostic Tools and Frameworks

The Surprise Question

"Would I be surprised if this patient died in the next year/months/days?"

• Simple clinical tool to prompt prognostic thinking [9]
• Negative answer ("No, I wouldn't be surprised") identifies patients who may benefit from palliative care approach
• Sensitivity and specificity vary by setting (60-80%) but valuable as trigger for further assessment [9]

Gold Standards Framework Prognostic Indicator Guidance (GSF-PIG)

Identifies patients in last year of life based on three criteria:

[10]

Supportive and Palliative Care Indicators Tool (SPICT)

Combines general deterioration indicators with specific clinical criteria:

General Indicators:

• Performance status deteriorating (limited self-care, in bed/chair > 50% of day)
• Dependent on others for most care
• Significant weight loss (5-10% over 3-6 months)
• Persistent symptoms despite optimal treatment
• Patient asking for palliative care

Plus condition-specific criteria for cancer, dementia, neurological disease, organ failure. [11]

Clinical Recognition of Last Days of Life

No single sign is pathognomonic, but a cluster of features suggests dying:

Physical Signs

[1,2]

Timeframes

• Days: Bedbound, drowsy, severely reduced intake
• Hours: Unconscious, irregular breathing, mottling spreading centrally, loss of radial pulse

Excluding Reversible Causes

Before diagnosing dying, consider and exclude:

Clinical Pearl: If there is doubt about whether someone is dying, treat reversible causes and reassess regularly. It is safer to err on the side of treating potentially reversible deterioration than to prematurely diagnose dying. [3]

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3. The Five Priorities for Care of the Dying Person

Following the 2014 independent review ("One Chance to Get It Right"), the Five Priorities replaced the Liverpool Care Pathway as the UK standard for end-of-life care. [3]

Priority 1: Recognition and Communication

This possibility that a person may die within the coming days or hours is recognised and communicated clearly, decisions made and actions taken in accordance with the person's needs and wishes, and these are regularly reviewed and decisions revised accordingly.

Key Actions

• Senior clinician involvement in diagnosis of dying
• Clear documentation of recognition of dying in medical notes
• Communicate with patient (if possible) and family
• Inform all members of multidisciplinary team
• Regular review: Dying is not always irreversible; reassess if condition changes

Communication Framework

SPIKES protocol for breaking bad news:

[12]

Priority 2: Sensitive Communication

Sensitive communication takes place between staff and the dying person, and those identified as important to them.

• Honest, clear communication avoiding medical jargon
• Use of words like "dying" rather than "passing" or "slipping away"
• Active listening to concerns and fears
• Provide information at patient/family pace
• Offer written information to supplement verbal discussions
• Interpreters for non-English speakers
• Address spiritual/existential concerns

Priority 3: Involvement in Decision-Making

The dying person, and those identified as important to them, are involved in decisions about treatment and care to the extent that the dying person wants.

Mental Capacity Assessment

Under Mental Capacity Act 2005, assume capacity unless proven otherwise:

• Can the person understand information?
• Can they retain it?
• Can they weigh up options?
• Can they communicate a decision?

If lacks capacity, decisions made in best interests:

• Consider patient's previously expressed wishes
• Consult Advance Decisions to Refuse Treatment (ADRT)
• Involve Lasting Power of Attorney for Health and Welfare
• Consult with family/carers (not legally decision-makers but provide valuable insight)

[13]

Advance Care Planning

Key documents:

[13]

DNACPR Decisions

CPR is inappropriate when:

• Patient has made informed decision to refuse CPR
• CPR will not restart heart and breathing (futile)
• CPR is not in keeping with documented advance decision
• Successful CPR would lead to length or quality of life not in patient's best interests

DNACPR discussion should:

• Be with patient if they have capacity and wish to discuss
• Explain what CPR involves realistically
• Explain why CPR unlikely to succeed or not in best interests
• Emphasise focus on active symptom control and comfort
• Be documented clearly with reasons
• Be reviewed regularly

Legal precedent: Tracey vs Cambridge University Hospitals (2014) established that patients must be involved in DNACPR discussions unless discussion itself would cause physical/psychological harm. [14]

Priority 4: Holistic Needs Assessment

The needs of families and others identified as important to the dying person are actively explored, respected and met as far as possible.

Physical Needs

• Symptom control (see Section 5)
• Hygiene, oral care, pressure area care
• Environment (lighting, noise, temperature, privacy)
• Medication route review (discontinue non-essential, convert to SC)

Psychological Needs

• Anxiety, fear, low mood
• Psychological support, reassurance
• Consider anxiolytics if appropriate

Social Needs

• Preferred place of care/death (home, hospice, hospital)
• Practical support for family
• Access to benefits/financial advice
• Cultural preferences

Spiritual Needs

• Meaning, purpose, legacy
• Religious practices, chaplaincy support
• Rituals before/after death specific to faith/culture

Priority 5: Individual Care Plan

An individual plan of care, which includes food and drink, symptom control and psychological, social and spiritual support, is agreed, coordinated and delivered with compassion.

• Written individualised care plan
• Regular review of symptoms (at least daily)
• Anticipatory prescribing for predictable symptoms
• Discontinue inappropriate interventions (blood tests, IV antibiotics, monitoring)
• Continue medications for comfort (analgesics, anxiolytics)
• Stop medications without short-term benefit (statins, antihypertensives, bisphosphonates)
• Review artificial hydration/nutrition needs

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4. Symptom Management in Last Days of Life

General Principles

Medication Route Conversion

Most dying patients lose ability to swallow; subcutaneous route preferred over IV (less invasive):

[15]

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Pain Management

Assessment

• Cannot self-report: Use pain behaviour tools (grimacing, agitation, guarding)
• Reassess regularly after medication changes

Pharmacological Management

Step 1: Opioid-Naïve Patients

Step 2: Patients Already on Opioids

• Convert oral to SC (see conversion table)
• Calculate 24-hour requirement
• Divide by 6 for 4-hourly PRN breakthrough dose
• Or use continuous subcutaneous infusion (CSCI)

Example: Patient on Morphine Sulphate 30mg BD (60mg/24hr oral)

• SC equivalent: 60mg ÷ 2 = 30mg/24hr
• CSCI: Diamorphine 20mg/24hr (60mg ÷ 3)
• Breakthrough: 5mg morphine SC PRN 4-hourly (30mg ÷ 6)

Breakthrough Pain

• Dose: 1/6th of total 24-hour dose
• Frequency: Every 4 hours PRN (subcutaneous morphine/oxycodone) or 1-hourly PRN (diamorphine)
• If requiring frequent breakthrough (> 2 doses in 24hr), increase background infusion

Specific Pain Syndromes

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Dyspnoea (Breathlessness)

One of most distressing symptoms; present in 25-50% of dying patients. [16]

Non-Pharmacological

• Fan: Cool air directed at face stimulates trigeminal nerve, reduces sensation of breathlessness
• Positioning: Upright, supported by pillows
• Calm environment: Reduce anxiety-provoking stimuli
• Reassurance

Pharmacological

Clinical Pearl: Oxygen is often requested by families but provides no symptomatic benefit if patient is not hypoxic and can be uncomfortable (mask/nasal prongs). Explain this sensitively. [17]

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Respiratory Secretions ("Death Rattle")

Noisy, gurgling breathing due to pooled secretions in oropharynx/bronchi in unconscious dying patients. Present in 30-90% of dying. [2]

Key Points

• Patient usually unaware (unconscious/reduced awareness)
• Distressing to relatives who may misinterpret as choking/drowning
• Explanation essential: "The breathing sounds noisy, but [Name] is not aware of it. It's caused by secretions that they can't cough up."

Management

Non-Pharmacological (First-line)

• Positioning: Turn patient on side, head slightly raised to allow drainage
• Explanation and reassurance to family
• Avoid suctioning: Usually ineffective, distressing, stimulates more secretion

Pharmacological

Anticholinergics reduce production of new secretions but do not dry existing secretions:

Choice: Hyoscine butylbromide first-line (fewer CNS side effects as doesn't cross blood-brain barrier). [2]

Clinical Pearl: Start early when secretions first noticed—less effective once established. Educate family that existing secretions will clear gradually with positioning.

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Nausea and Vomiting

Present in 40-70% dying patients; multiple potential causes. [1]

Causes and Mechanisms

Pharmacological Management

Broad-Spectrum (First-line in dying phase)

Receptor-Specific

Clinical Pearl: Levomepromazine is usually first-choice in dying patients due to broad coverage. Avoid metoclopramide + cyclizine together (antagonistic effects). [1]

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Terminal Agitation and Delirium

Restlessness, confusion, distress in 25-85% dying patients. [18]

Causes (Potentially Reversible)

• Pain → Increase analgesia
• Urinary retention → Catheterise
• Constipation → Rectal measures (suppositories/enema)
• Hypoxia → Oxygen (if appropriate)
• Medication → Opioid toxicity (myoclonus, hallucinations—consider rotation), anticholinergics
• Metabolic → Hypercalcaemia, uraemia (if appropriate to treat)
• Full bladder/rectum → Catheter, rectal exam

Pharmacological Management

First-line: Benzodiazepines

Second-line: Antipsychotics

Refractory Terminal Agitation

• Escalate midazolam (can use doses up to 120-240mg/24hr in some cases)
• Add levomepromazine or haloperidol
• Consider phenobarbital 600-1200mg/24hr CSCI in exceptional cases (seek specialist advice)

Clinical Pearl: Always exclude and treat reversible causes first (especially urinary retention and constipation—examine patient). If unclear, trial of analgesia may help.

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Constipation

Common (40-90%) due to opioids, reduced intake, immobility, dehydration. [1]

Management

Prophylaxis: All patients on opioids should have regular laxative:

• Senna 15-30mg ON or BD (stimulant)
• Or Docusate 200mg BD (softener + mild stimulant)
• Or Macrogol (Movicol) 1-3 sachets daily (osmotic)

If Established Constipation:

• Increase oral laxatives (if able to swallow)
• Rectal measures: Bisacodyl suppository 10mg or Phosphate enema
• Avoid rectal interventions if low platelets, neutropenic, rectal tumour

Opioid-Induced with Refractory Constipation:

• Naloxegol (peripheral opioid antagonist) if prognosis >weeks

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5. Anticipatory Prescribing ("Just in Case" Medications)

Rationale

Prescribe medications in advance for common symptoms likely to occur, ensuring immediate availability especially in community settings. Avoids delays that prolong distress. [1,2]

Core Four Symptoms and Medications

Additional Medications (As Clinically Indicated)

• Cyclizine 50mg SC TDS PRN (vestibular nausea, raised ICP)
• Dexamethasone 8-16mg SC OD (raised ICP, spinal cord compression)

Prescribing Notes

• Specify SC route
• Prescribe as PRN with clear indication
• Ensure available at bedside (especially community/care home)
• Review regularly
• Train nurses/carers in recognising need and administration

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6. Continuous Subcutaneous Infusion (CSCI) – Syringe Driver

Indications

• Unable to take oral medication (dysphagia, vomiting, unconsciousness)
• Poor absorption (intestinal obstruction)
• Need for continuous symptom control

Commonly Used Syringe Drivers

• McKinley T34: Set to deliver over 24 hours (rate in mm/24hr)
• Portable, battery-powered, accurate delivery

Drug Compatibility

Compatible Combinations (in same syringe):

✅ Diamorphine + Midazolam + Hyoscine Butylbromide + Levomepromazine ✅ Diamorphine + Midazolam + Haloperidol ✅ Diamorphine + Midazolam + Cyclizine (may crystallise at higher concentrations; observe)

Incompatible (do NOT mix):

❌ Cyclizine + Levomepromazine ❌ Dexamethasone + most other drugs (give as separate SC injection)

[15]

Example CSCI Prescriptions

Example 1: Opioid-naïve patient with pain and agitation

Diamorphine 10mg + Midazolam 10mg
in Water for Injection to 24ml
via CSCI over 24 hours

Example 2: Patient on oral morphine 60mg/day with nausea

Diamorphine 20mg + Levomepromazine 25mg
in Water for Injection to 24ml
via CSCI over 24 hours

Breakthrough doses (SC PRN):

• Diamorphine: 1/6th of 24-hour dose (e.g., 3-4mg if CSCI = 20mg)
• Midazolam: 2.5-5mg

Monitoring

• Check driver functioning regularly
• Assess symptom control
• Titrate doses if inadequate control (usually increase by 30-50%)
• Check site for inflammation/swelling

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7. Hydration and Nutrition in Last Days

Ethical and Clinical Considerations

As dying progresses, desire and ability to eat/drink naturally declines. Clinically assisted nutrition/hydration (CANH) becomes a medical intervention requiring assessment of benefits vs burdens. [3,13]

Oral Intake

• Offer sips if patient desires
• Mouth care essential (dry mouth is uncomfortable)
• Do not force feeding/drinking

Clinically Assisted Hydration (IV or SC Fluids)

Potential Benefits:

• May reduce thirst (though mouth care equally effective)
• May reduce opioid toxicity if dehydrated
• Psychological comfort to family

Potential Burdens:

• Increased secretions → worsened death rattle
• Peripheral oedema
• Pulmonary oedema → dyspnoea
• Ascites (if liver disease/peritoneal disease)
• Discomfort of cannula/infusion
• Prolongs dying process

Evidence: No clear survival or symptom benefit from IV/SC hydration in dying patients; may increase respiratory secretions. [2,19]

Decision-Making

• Individualised discussion with patient (if able) and family
• Explain natural reduction in intake at end of life
• Explain potential harms of artificial hydration
• If patient lacks capacity, best interests decision considering patient's values/preferences
• Document clearly

If decision to give fluids: Usually subcutaneous (SC) infusion 500-1000ml/24hr (e.g., 0.9% saline)

Nutrition

Artificial nutrition (NG, PEG, TPN) generally inappropriate in last days of life:

• No evidence of benefit
• Burdens (discomfort, aspiration risk, complications)
• Withdraw if already in place after discussion

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8. Medication Review and Rationalisation

Principles

• Continue: Medications needed for symptom control (analgesia, antiemetics, anxiolytics)
• Stop: Medications with no short-term benefit or potential to cause harm
• Convert: Oral to SC route where appropriate

Medications to STOP in Last Days

Medications to CONTINUE/CONSIDER

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9. Place of Death and Care Settings

Preferred Place of Care

Over 70% of people express preference to die at home, but only 40-50% achieve this. [5]

Facilitating Home Death

Requirements:

• Patient and family wish for home care
• Symptoms controlled or controllable
• 24-hour care available (family/carers)
• Rapid access to:
  • Anticipatory medications
  • Specialist palliative care advice (e.g., local hospice advice line)
  • District nursing support
• DNACPR in place and known to ambulance service (avoid inappropriate 999 calls)
• GP and out-of-hours services informed

Fast-track discharge from hospital if dying and wishes to die at home: Arrange within 24-48 hours with community MDT coordination.

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10. Spiritual, Cultural, and Religious Considerations

Spiritual Needs in Dying

Distinct from religious needs; includes:

• Meaning and purpose
• Legacy (what will I be remembered for?)
• Forgiveness and reconciliation
• Connection with nature, art, music
• Life review

Assessment: "Are there spiritual or religious matters that are important to you at this time?"

Religious Practices at End of Life

Clinical Pearl: Ask patient/family about specific religious or cultural practices important to them. Facilitate where possible (e.g., allowing extra visitors, positioning of bed, privacy for rituals).

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11. Care After Death

Verification of Death

Confirmation by registered medical practitioner, nurse, or paramedic (if trained).

Criteria (all must be present):

• Absence of central pulse (carotid) for 1 minute
• Absence of heart sounds for 1 minute
• Absence of respiratory effort for 1 minute
• Fixed, dilated pupils unreactive to light

Documentation: Time of death, verification in medical notes.

Certification (MCCD – Medical Certificate of Cause of Death)

Completed by doctor who attended during last illness:

• Part 1a: Immediate cause (e.g., Bronchopneumonia)
• Part 1b: Underlying cause (e.g., Metastatic Lung Cancer)
• Part 1c: Original cause (e.g., Smoking-related NSCLC)
• Part 2: Other significant conditions contributing (e.g., COPD)

When to refer to Coroner (England/Wales) or Procurator Fiscal (Scotland):

• Cause of death unknown
• Death within 24 hours of hospital admission
• Death during or within 24 hours of procedure/surgery
• Suspicious circumstances
• Related to accident/injury
• Related to industrial disease
• Person in custody

Last Offices (Care of the Body)

• Respectful washing and preparation of body
• Remove tubes/lines (unless Coroner case)
• Cultural/religious requirements (ritual washing by family/religious leaders)
• Valuables returned to family
• Identification bands

Bereavement Support

• Immediate support to family present at death
• Provide written information on what happens next (registration, funeral arrangements)
• Information on bereavement services (e.g., Cruse Bereavement Care)
• GP notification (bereavement increases mortality risk in surviving spouse/carers)
• Follow-up for complicated grief (prolonged, severe symptoms > 6 months)

Staff Debrief

After difficult/distressing deaths, offer debrief for clinical team to:

• Process emotions
• Identify learning points
• Support team wellbeing

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12. Organ and Tissue Donation

Approaching Donation

Even in dying patients, organ donation may be possible in specific circumstances:

• Donation after Brainstem Death (DBD): Not applicable to cancer/end-of-life patients (requires ICU support)
• Donation after Circulatory Death (DCD): Possible in selected patients dying in hospital

Tissue donation (corneas, heart valves, skin, bone) possible in wider range of deaths.

When to Consider

• Younger patients dying with limited comorbidities
• No active malignancy (some exceptions, e.g., primary brain tumours)
• Family raises the issue, or clinical team identifies potential suitability

Specialist Nurses in Organ Donation (SNODs) available 24/7 to discuss—involve early if considering donation.

Ethical Considerations

• Must not compromise patient comfort or hasten death
• Withdrawal of life-sustaining treatment (if appropriate) separate decision from donation
• Ensure family understands donation is optional

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13. Legal and Ethical Frameworks

Mental Capacity Act 2005 (England & Wales)

Governs decision-making for those lacking capacity:

Five Principles:

1. Assume capacity unless proven otherwise
2. Support people to make decisions
3. Unwise decisions ≠ lack of capacity
4. Best interests if lacks capacity
5. Least restrictive option

Best Interests Checklist:

• Patient's past and present wishes
• Beliefs and values
• Other factors patient would consider
• Views of family, carers, attorneys, deputies
• Avoid discrimination

[13]

Advance Decisions to Refuse Treatment (ADRT)

Validity:

• Made when person had capacity
• Applies to current circumstances
• Not withdrawn
• No subsequent LPA appointing someone to make that decision

Applicability:

• Covers specific treatment in specific circumstances
• If valid and applicable, legally binding—treatment cannot be given

Special requirements for life-sustaining treatment refusal:

• Must be in writing
• Signed and witnessed
• Must explicitly state "even if life at risk"

[13]

Four Principles of Medical Ethics

Doctrine of Double Effect

Medications (e.g., opioids) given to relieve suffering are ethical even if they may incidentally shorten life, provided:

1. Intention is to relieve symptoms (not to hasten death)
2. Symptom relief is proportionate to dose
3. Death is foreseen but not intended side effect

Legal protection: No doctor has been successfully prosecuted in UK for appropriate symptom relief at end of life. [8]

Clinical Pearl: Document clearly that intention is symptom control, doses are appropriate, and titrated to symptoms.

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14. Common Clinical Scenarios and Challenges

Scenario 1: "The Death Rattle" – Distressed Relatives

Situation: Family distressed by noisy breathing ("death rattle") in unconscious dying patient.

Management:

1. Explain: "The breathing sounds noisy, but [Name] is not aware of it. They are deeply unconscious. The noise is caused by secretions pooling in the throat that they can't cough up."
2. Reassure: Not distressing to patient
3. Reposition: Turn patient on side, head slightly raised
4. Anticholinergic: Hyoscine butylbromide 20mg SC, can repeat 4-6 hourly
5. Avoid suctioning: Ineffective, distressing, stimulates more secretions
6. Family: Offer to step out if noise too upsetting, reassure patient peaceful

Scenario 2: Terminal Agitation

Situation: Previously settled patient now restless, agitated, distressed in last days.

Assessment:

1. Exclude pain: Increase analgesia trial
2. Check bladder: Palpate, consider catheter
3. Check bowels: PR exam, treat constipation
4. Review drugs: Opioid toxicity? (myoclonus, hallucinations → rotate opioid)
5. Metabolic: Hypercalcaemia? (check if appropriate)

Management:

• If reversible cause → treat
• If no reversible cause or treatment inappropriate:
  • Midazolam 5mg SC, repeat 2.5-5mg every 1-2 hours until settled
  • Consider CSCI midazolam 10-30mg/24hr, titrate up
  • Add levomepromazine 12.5-25mg SC if inadequate response

Scenario 3: Family Request to "Do Everything"

Situation: Family requesting active treatment (ICU, antibiotics, fluids) for dying patient who lacks capacity.

Management:

1. Empathetic listening: Understand family's fears and hopes
2. Explore understanding: "What is your understanding of what's happening to [Name]?"
3. Explain prognosis: Honest, compassionate explanation that [Name] is dying
4. Explain treatment burdens: ICU would not prevent death, would cause distress; antibiotics won't reverse dying process
5. Reframe goals: "We can't stop [Name] from dying, but we can make sure they're comfortable and peaceful"
6. Emphasise what you ARE doing: Active symptom control, dignity, family access
7. Anticipate death: "I think [Name] will die in the next hours/days"
8. Document: Best interests decision if family disagrees but clinical team agrees treatment inappropriate

Clinical Pearl: Families who request "everything" are often expressing fear that their loved one will be abandoned. Reassure them about active care plan.

Scenario 4: Rapidly Deteriorating Patient – Is This Dying?

Situation: Patient with advanced disease suddenly deteriorates. Are they dying or is this reversible?

Assessment:

1. Treat reversible causes first if doubt:
   • Sepsis → Antibiotics if appropriate
   • Hypercalcaemia → Fluids, bisphosphonates
   • Dehydration → Trial of SC fluids
   • VTE, MI → Consider if treatment appropriate
2. Senior review
3. Discuss with patient/family (if possible)
4. Time-limited trial: "Let's treat the infection/give fluids and reassess in 24-48 hours"
5. If no improvement → Recognise dying, shift to comfort care

Clinical Pearl: It is better to initially treat a potentially reversible cause than to prematurely diagnose dying.

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15. Examination Focus (MRCP, MRCGP, Palliative Medicine)

Viva Questions and Model Answers

Q1: A 78-year-old man with metastatic prostate cancer is deteriorating. How would you assess whether he is dying?

Model Answer: I would assess using a combination of clinical signs, trajectory, and exclusion of reversible causes.

Clinical signs suggesting dying: Progressive deterioration with bedbound state, profound weakness, reduced consciousness (drowsy to semi-conscious), inability/unwillingness to eat or drink, altered breathing patterns (Cheyne-Stokes, apnoeas), peripheral cyanosis and mottling, cool peripheries, oliguria.

Before diagnosing dying, I would actively exclude reversible causes such as infection (check for fever, new focus, consider CRP/cultures), hypercalcaemia (check corrected calcium—common in bone metastases), opioid toxicity (review medication doses, look for myoclonus), dehydration (consider trial of SC fluids), or acute event (MI, PE).

I would involve a senior clinician in the decision, and ensure regular reassessment as dying is not always irreversible.

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Q2: What are the Five Priorities for Care of the Dying Person?

Model Answer: Following the 2014 review "One Chance to Get It Right," the Five Priorities replaced the Liverpool Care Pathway:

1. Recognise: Dying is recognised and communicated clearly; decisions made and reviewed regularly
2. Communicate: Sensitive communication with the dying person and those important to them
3. Involve: The dying person and family involved in decisions about care
4. Support: Needs of family and carers actively explored and met
5. Plan: Individual plan of care agreed, including symptom control and holistic support

These emphasise individualised, person-centred care rather than a tick-box pathway.

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Q3: A dying patient has noisy breathing ("death rattle") which is distressing the family. How would you manage this?

Model Answer: Explanation and reassurance are key. I would explain to the family that the patient is unconscious and not aware of the noisy breathing, which is caused by secretions pooling in the throat that they cannot cough up or swallow. This is distressing to hear but not to the patient.

Non-pharmacological: Reposition the patient on their side with head slightly raised to allow drainage. Avoid suctioning—it's ineffective, distressing, and stimulates more secretions.

Pharmacological: Anticholinergics to reduce further secretion production (won't dry existing secretions):

• Hyoscine butylbromide (Buscopan) 20mg SC PRN or regularly (doesn't cross blood-brain barrier, fewer CNS side effects), or
• Glycopyrronium 200mcg SC TDS PRN

Start early when secretions first noticed for better effect.

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Q4: How do you convert oral morphine to subcutaneous morphine/diamorphine for a syringe driver?

Model Answer: For a patient unable to swallow, I would convert oral to subcutaneous route:

Morphine conversion: Oral morphine to SC morphine is 2:1 (divide oral dose by 2)

• Example: Morphine 60mg/24hr oral = 30mg/24hr SC morphine

Diamorphine conversion: Oral morphine to SC diamorphine is 3:1 (divide oral dose by 3)

• Example: Morphine 60mg/24hr oral = 20mg/24hr SC diamorphine

I would prescribe this as a continuous subcutaneous infusion (CSCI) over 24 hours in a syringe driver.

Breakthrough dose: 1/6th of 24-hour dose, given SC PRN 4-hourly (for morphine) or 1-hourly (for diamorphine).

If patient requires frequent breakthrough doses (> 2 in 24 hours), I would increase the background infusion by 30-50%.

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Q5: What anticipatory ("just in case") medications would you prescribe for a patient entering the last days of life?

Model Answer: I would prescribe subcutaneous medications in advance for the four commonest symptoms:

1. Pain: Morphine sulphate 2.5-5mg SC PRN 4-hourly (if opioid-naïve)
2. Agitation/Anxiety: Midazolam 2.5-5mg SC PRN
3. Respiratory secretions (death rattle): Hyoscine butylbromide 20mg SC PRN
4. Nausea/Vomiting: Levomepromazine 6.25-12.5mg SC PRN

This ensures medications are available immediately when needed, particularly important in community settings. I would review regularly, ensure nurses/carers know when to administer, and document indications clearly.

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Q6: When is clinically assisted hydration (IV/SC fluids) appropriate in a dying patient?

Model Answer: This requires individualised assessment of benefits vs burdens.

Potential benefits: May reduce thirst (though mouth care is equally effective), may reduce delirium or opioid toxicity if patient dehydrated, psychological comfort to family.

Potential burdens: Increased respiratory secretions (worsening death rattle), peripheral and pulmonary oedema (worsening dyspnoea), ascites, discomfort of cannula, may prolong dying process.

Evidence: No clear benefit in symptom control or survival from artificial hydration in dying patients; may increase secretions.

Decision-making: Discuss with patient (if able) and family, explaining natural reduction in intake at end of life. If patient lacks capacity, make best interests decision considering their values and preferences. Generally, artificial hydration is not recommended in last days of life unless specific indication (e.g., opioid toxicity with dehydration).

If decision to give fluids, use subcutaneous route (500-1000ml/24hr) rather than IV.

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Q7: What is the legal status of DNACPR decisions?

Model Answer: DNACPR is a clinical decision that CPR will not be attempted.

When appropriate:

• Patient with capacity makes informed decision to refuse CPR
• CPR would be futile (will not restart heart and breathing)
• Successful CPR would not be in patient's best interests (quality/length of life)

Patient involvement: Following Tracey judgment (2014), patients must be involved in DNACPR discussions unless discussion itself would cause physical or psychological harm. Patients can refuse CPR but cannot demand it if clinically inappropriate.

Documentation: Clear documentation of decision, reasons, who was involved. Communicated to all relevant teams (especially ambulance service if community DNACPR).

Not a general treatment limitation: DNACPR only applies to CPR—does not mean withholding other treatments (antibiotics, fluids, etc.).

Review: Should be reviewed regularly, especially if clinical condition changes.

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OSCE Scenario: Breaking Bad News – Recognising Dying

Scenario: You are the on-call medical registrar. A 72-year-old woman with advanced ovarian cancer has deteriorated over the past 24 hours. She is now bedbound, drowsy, not eating or drinking, with Cheyne-Stokes breathing and mottled peripheries. You have assessed her and believe she is dying. Her daughter is here and asks to speak to you. Explain the situation.

Marking Criteria:

1. Setting: Introduce yourself, ensure private space, sitting down, check who daughter is and what she knows
2. Perception: "What is your understanding of what's been happening to your mother?"
3. Warning shot: "I'm afraid the news isn't good. Is it okay if I explain what we think is happening?"
4. Explanation: Use clear language ("dying," not euphemisms). Explain clinical signs. Explain this is part of her cancer, not reversible.
5. Empathy: Acknowledge emotions, allow silence, offer tissues
6. Questions: "Do you have any questions?" Answer honestly and compassionately
7. Plan: Explain focus now on comfort and dignity. Explain symptom control plan. Discuss practical issues (other family members, preferred place of care if appropriate, chaplaincy, staying with her)
8. Follow-up: "I'll come back to check on you. The nurses are here if you need anything."

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16. Patient and Family Explanation

What Does "End of Life Care" Mean?

End-of-life care is the care we provide in the last days or hours of life. When someone is dying, our focus changes from trying to cure or control their illness to making sure they are comfortable, peaceful, and supported.

What Happens in the Last Days of Life?

As the body begins to shut down naturally, you may notice:

• Your loved one becomes sleepier and less responsive
• They may not want to eat or drink (this is normal and not uncomfortable for them)
• Their breathing may change—sometimes faster, sometimes slower, with pauses
• Their hands and feet may feel cool, and their skin may become mottled
• They may seem less aware of what's happening around them

These are natural parts of the dying process.

Will They Be in Pain?

We will make sure they are comfortable. We give medications to control pain, breathlessness, nausea, or any distress. These medications are given regularly to prevent symptoms, not just when they occur.

The Noisy Breathing ("Death Rattle")

Sometimes breathing becomes noisy due to secretions (mucus) in the throat. This can sound distressing, but your loved one is not aware of it—they are too deeply unconscious. We can give medications to reduce new secretions and reposition them to help.

Can They Hear Me?

Hearing is thought to be one of the last senses to fade. We encourage you to talk to them, hold their hand, play their favorite music—they may still find this comforting even if they cannot respond.

Eating and Drinking

It's natural for dying people to stop wanting food and fluids. Forcing them to eat or drink can cause discomfort. We will keep their mouth moist with regular mouth care.

What Can I Do?

• Be present: Your presence is comforting, even if they can't respond
• Talk to them: Share memories, tell them it's okay to let go if that feels right
• Look after yourself: Eat, rest when you can, accept support from family and friends
• Ask questions: We are here to support you too

What Happens When They Die?

When someone dies, they will:

• Stop breathing
• Have no pulse
• Not respond to touch or voice

This is peaceful. We will confirm death and support you with the next steps.

Where Can I Get Support?

We will provide information on bereavement support services, funeral arrangements, and practical matters. Your GP will be informed and can provide ongoing support.

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17. Quality Indicators and Audit Standards

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18. Historical Context: Liverpool Care Pathway

Development and Use

The Liverpool Care Pathway for the Dying Patient (LCP) was developed in the 1990s at the Royal Liverpool University Hospital and Marie Curie Hospice to transfer best hospice practice into hospital settings. It was widely adopted across the UK and internationally. [20]

The Neuberger Review (2013)

Concerns emerged about misuse of the LCP:

• Patients diagnosed as dying without adequate assessment (some subsequently recovered)
• Premature withdrawal of hydration/nutrition
• Poor communication with families
• Pathway used as "tick-box" rather than individualised care

An independent review chaired by Baroness Neuberger concluded that the LCP should be phased out. [3]

Lessons Learned

Legacy: The LCP raised awareness of end-of-life care quality but highlighted dangers of protocolised care without clinical judgment. The Five Priorities framework represents a more flexible, person-centred approach. [3]

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19. Key Evidence and Guidelines

Guidelines

Landmark Evidence

Symptom Control:

• Opioids for pain and dyspnoea: Multiple RCTs confirm efficacy; no evidence that appropriate doses hasten death [6,16]
• Benzodiazepines for anxiety and dyspnoea: Effective for symptom control [18]

Hydration:

• RCT by Bruera et al. (2013): No significant difference in symptom control between hydration and placebo in advanced cancer patients [19]
• Systematic review (Cochrane 2008): Insufficient evidence for benefit of hydration in palliative care; potential harms [2]

Prognostic Tools:

• Surprise Question validation: 74% specificity, 77% sensitivity for 12-month mortality (variable by setting) [9]
• SPICT validation: Identifies 75-85% of patients who die within 12 months [11]

Communication:

• SPIKES protocol widely adopted for breaking bad news, improves family satisfaction [12]

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20. Red Flags and Complications

Red Flags

Complications

Opioid Toxicity: Myoclonus, vivid dreams, hallucinations, confusion, pinpoint pupils, respiratory depression (rare at appropriate doses)

• Management: Reduce dose, opioid rotation (e.g., morphine → oxycodone), ensure hydrated

Terminal Agitation Refractory to Treatment:

• Escalate midazolam (up to 60-120mg/24hr CSCI)
• Add antipsychotic (levomepromazine, haloperidol)
• Seek specialist palliative care advice
• Consider phenobarbital in exceptional cases

Respiratory Depression with Opioids:

• Rare when appropriately titrated
• If occurs: Reduce dose, support respirations if appropriate (may not be appropriate if patient dying)
• Naloxone: Only if accidental overdose or medication error (not appropriate for intentional symptom control)

Syringe Driver Malfunction:

• Check battery, check line not kinked, check site not inflamed
• If patient uncomfortable, give breakthrough dose SC while troubleshooting

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21. Multidisciplinary Team Involvement

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22. Future Directions and Evolving Practice

• Advance care planning: Increasing emphasis on proactive ACP discussions earlier in disease trajectory
• Shared decision-making tools: Development of decision aids for hydration, place of care
• Telemedicine: Remote specialist palliative care advice supporting generalists
• Outcome measurement: Validated tools for measuring quality of dying (e.g., Quality of Dying and Death questionnaire)
• Inequalities: Addressing disparities in access to palliative care (non-cancer diagnoses, ethnic minorities, homeless populations)
• Assisted dying: Ongoing legal and ethical debate in UK (currently illegal; legal in some jurisdictions)

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References

1. National Institute for Health and Care Excellence. Care of dying adults in the last days of life (NG31). London: NICE; 2015. Available from: https://www.nice.org.uk/guidance/ng31

2. Good P, Cavenagh J, Mather M, Ravenscroft P. Medically assisted hydration for adults receiving palliative care. Cochrane Database Syst Rev. 2008;(2):CD006273. doi: 10.1002/14651858.CD006273.pub2

3. Leadership Alliance for the Care of Dying People. One chance to get it right: Improving people's experience of care in the last few days and hours of life. London: UK Government; 2014. Available from: https://www.gov.uk/government/publications/liverpool-care-pathway-review-response-to-recommendations

4. Wright AA, et al. Associations between end-of-life discussions, patient mental health, medical care near death, and caregiver bereavement adjustment. JAMA. 2008;300(14):1665-73. doi: 10.1001/jama.300.14.1665

5. Office for National Statistics. Deaths registered in England and Wales: 2022. London: ONS; 2023.

6. Wiffen PJ, Wee B, Moore RA. Oral morphine for cancer pain. Cochrane Database Syst Rev. 2016;4(4):CD003868. doi: 10.1002/14651858.CD003868.pub4

7. Gomes B, Calanzani N, Higginson IJ. Benefits and costs of home palliative care compared with usual care for patients with advanced illness and their family caregivers. JAMA. 2014;311(10):1060-1. doi: 10.1001/jama.2014.553

8. General Medical Council. Treatment and care towards the end of life: good practice in decision making. London: GMC; 2010 (updated 2022). Available from: https://www.gmc-uk.org/ethical-guidance/ethical-guidance-for-doctors/treatment-and-care-towards-the-end-of-life

9. Downar J, Goldman R, Pinto R, Englesakis M, Adhikari NK. The "surprise question" for predicting death in seriously ill patients: a systematic review and meta-analysis. CMAJ. 2017;189(13):E484-E493. doi: 10.1503/cmaj.160775

10. Royal College of General Practitioners. Gold Standards Framework Prognostic Indicator Guidance. 4th ed. London: RCGP; 2011. Available from: https://www.goldstandardsframework.org.uk

11. Highet G, Crawford D, Murray SA, Boyd K. Development and evaluation of the Supportive and Palliative Care Indicators Tool (SPICT): a mixed-methods study. BMJ Support Palliat Care. 2014;4(3):285-90. doi: 10.1136/bmjspcare-2013-000488

12. Baile WF, Buckman R, Lenzi R, Glober G, Beale EA, Kudelka AP. SPIKES-A six-step protocol for delivering bad news: application to the patient with cancer. Oncologist. 2000;5(4):302-11. doi: 10.1634/theoncologist.5-4-302

13. Department for Constitutional Affairs. Mental Capacity Act 2005: Code of Practice. London: TSO; 2007.

14. Tracey v Cambridge University Hospitals NHS Foundation Trust and Others [2014] EWCA Civ 822.

15. Dickman A, Schneider J, Varga J. The Syringe Driver: Continuous Subcutaneous Infusions in Palliative Care. 4th ed. Oxford: Oxford University Press; 2016.

16. Barnes H, McDonald J, Smallwood N, Manser R. Opioids for the palliation of refractory breathlessness in adults with advanced disease and terminal illness. Cochrane Database Syst Rev. 2016;3(3):CD011008. doi: 10.1002/14651858.CD011008.pub2

17. Abernethy AP, McDonald CF, Frith PA, et al. Effect of palliative oxygen versus room air in relief of breathlessness in patients with refractory dyspnoea: a double-blind, randomised controlled trial. Lancet. 2010;376(9743):784-93. doi: 10.1016/S0140-6736(10)61115-4

18. Candy B, Jackson KC, Jones L, Leurent B, Tookman A, King M. Drug therapy for delirium in terminally ill adult patients. Cochrane Database Syst Rev. 2012;11:CD004770. doi: 10.1002/14651858.CD004770.pub2

19. Bruera E, Hui D, Dalal S, et al. Parenteral hydration in patients with advanced cancer: a multicenter, double-blind, placebo-controlled randomized trial. J Clin Oncol. 2013;31(1):111-8. doi: 10.1200/JCO.2012.44.6518

20. Ellershaw J, Ward C. Care of the dying patient: the last hours or days of life. BMJ. 2003;326(7379):30-4. doi: 10.1136/bmj.326.7379.30

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Last Reviewed: 2026-01-06 | MedVellum Editorial Team

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Medical Disclaimer: MedVellum content is for educational purposes and clinical reference. End-of-life care should be delivered by trained healthcare professionals with sensitivity, compassion, and in accordance with local guidelines and legal frameworks. Individual patient care must be tailored to specific circumstances, values, and preferences.