Overview
End of Life Care (Last Days of Life)
1. Topic Overview (Clinical Overview)
Summary
End of Life Care refers to care during the last days to hours of life when a person is recognised as dying. The focus shifts from curative treatment to comfort, dignity, and symptom control. Key principles include early recognition of dying, good communication with the patient and family, anticipatory prescribing of medications for common symptoms (Pain, Agitation, Secretions, Nausea), and individualised care. The "5 Priorities for Care of the Dying Person" (One Chance to Get It Right, 2014) replaced the Liverpool Care Pathway and guides practice in the UK. Before diagnosing dying, it is essential to exclude reversible causes of deterioration.
Key Facts
- Goal: Comfort. Dignity. Symptom control. Support for patient and family.
- 5 Priorities of Care: Recognition. Communication. Involvement. Care plan. Support after death.
- Anticipatory Medications ("Just in Case"): Morphine (Pain), Midazolam (Agitation), Hyoscine (Secretions), Levomepromazine (Nausea).
- Before Diagnosing Dying: Exclude reversible causes (Infection, Hypercalcaemia, Drug toxicity, etc.).
- Hydration/Nutrition: Reviewed individually. Often reduced/stopped in dying phase.
Clinical Pearls
"Is This Person Actually Dying?": Always consider reversible causes before diagnosing dying. Missed treatable conditions are a red flag.
"Anticipatory Prescribing Prevents Crisis": Prescribe "Just in Case" medications so they are available when needed.
"Communication is Key": Have early, honest conversations with patient and family about expectations.
"The Rattle is Distressing to Family, Not Patient": Secretions (Death rattle) sound distressing but the patient is usually unaware.
Why This Matters Clinically
Good end-of-life care ensures patients die with dignity and comfort. Poor care causes unnecessary suffering for patients and families.
2. Recognition of Dying
Diagnosing Dying
| Consider | Notes |
|---|---|
| Clinical Picture | Progressive deterioration. Increasing weakness. Reduced oral intake. |
| Underlying Condition | Terminal illness with no further treatment options. |
| Exclude Reversible Causes | Infection. Dehydration. Hypercalcaemia. Opioid toxicity. Medication side effects. Acute event (MI, PE, Obstruction). |
Signs Suggesting the Last Days of Life
| Sign | Notes |
|---|---|
| Profound Weakness | Bedbound. |
| Reduced Oral Intake | Not interested in food/fluids. |
| Semi-Consciousness / Drowsiness | Sleeping more. Reduced awareness. |
| Altered Breathing | Cheyne-Stokes. Shallow. Apnoeas. |
| Peripheral Cyanosis / Mottling | |
| Cool Extremities | |
| Reduced Urine Output | Concentrated/Dark. |
| Changes in Cognition | Confusion. Delirium. |
3. 5 Priorities for Care of the Dying Person
(One Chance to Get It Right, 2014 – Replaced Liverpool Care Pathway)
| Priority | Description |
|---|---|
| 1. Recognise | Possibility that a person may die within the next few days is recognised and communicated clearly. Decisions made as needed. |
| 2. Communicate | Sensitive communication takes place. The dying person and family are listened to and informed. |
| 3. Involve | The dying person (And those identified as important to them) are involved in decisions. |
| 4. Support | The needs of families and carers are actively explored, respected, and met. |
| 5. Plan | An individual plan of care is created with the dying person (If possible). This includes food, drink, symptom control, psychological/spiritual/religious support. |
4. Anticipatory Prescribing ("Just in Case" Medications)
Principles
- Prescribe medications in advance for common symptoms that may arise in the dying phase.
- Ensures medications are available immediately when needed, especially in community/hospice.
- Review regularly and administer as needed (PRN).
Core 4 Symptoms and Medications
| Symptom | First-Line Drug | Dose / Route | Notes |
|---|---|---|---|
| Pain | Morphine Sulphate | 2.5-5mg SC PRN (Opioid naïve). | Titrate to effect. Diamorphine for syringe driver. |
| Agitation / Anxiety | Midazolam | 2.5-5mg SC PRN. | Calming. May be needed for terminal agitation. |
| Respiratory Secretions ("Death Rattle") | Hyoscine Butylbromide (Buscopan) | 20mg SC PRN. | Or Glycopyrronium. Reduces secretion production (Does NOT dry existing secretions – Reposition patient). |
| Nausea / Vomiting | Levomepromazine | 6.25-12.5mg SC PRN. | Broad-spectrum antiemetic. OR Haloperidol 1-2.5mg. |
Additional Prescriptions (As Indicated)
| Symptom | Drug | Notes |
|---|---|---|
| Terminal Restlessness / Severe Agitation | Midazolam (Higher doses). Levomepromazine. | May need continuous CSCI (Syringe Driver). |
| Dyspnoea | Morphine (Low dose). | Reduces sensation of breathlessness. |
| Seizures | Midazolam 10mg Buccal/SC. | As rescue. |
Syringe Driver / CSCI (Continuous Subcutaneous Infusion)
- For patients who cannot take oral medications.
- Delivers continuous medication over 24 hours.
- Common combinations: Morphine/Diamorphine + Midazolam +/- Hyoscine +/- Levomepromazine.
5. Symptom Management
Pain
| Principle | Detail |
|---|---|
| Assess | Nature, Location, Cause. |
| Opioids | Morphine is Gold Standard. Convert oral to SC (1:2 ratio). Diamorphine for CSCI (1:3 ratio from oral morphine). |
| Breakthrough Doses | 1/6th of 24hr dose PRN. |
| Fentanyl Patch | Continue if already in place; Takes time to work so NOT for starting in dying phase. |
Agitation / Terminal Restlessness
| Cause | Management |
|---|---|
| Pain | Opioids. |
| Urinary Retention | Catheterise. |
| Constipation | Rectal measures. |
| Fear / Anxiety | Reassurance. Midazolam. |
| Opioid Toxicity | Rotate Opioid. Reduce dose. |
| Hypoxia | Oxygen (Not always helpful). |
| Delirium | Midazolam. Levomepromazine. |
Respiratory Secretions ("Death Rattle")
| Principle | Detail |
|---|---|
| Reassure Family | Patient is usually unaware. |
| Repositioning | Turn to side. Head raised. Allows drainage. |
| Anticholinergics | Hyoscine Butylbromide. Glycopyrronium. (Reduces further production – Does NOT suction existing secretions). |
| Avoid Suctioning | Usually ineffective and distressing. |
Nausea / Vomiting
| Principle | Detail |
|---|---|
| Levomepromazine | Broad-spectrum. First-line in dying. |
| Haloperidol | Alternative. |
| Cyclizine | If vestibular component. |
Dyspnoea
| Principle | Detail |
|---|---|
| Opioids | Low-dose Morphine reduces sensation. |
| Benzodiazepines | If anxiety contributing. |
| Oxygen | May help if hypoxic. Not always needed. |
| Fan / Cool Air | Simple. Effective. |
6. Hydration and Nutrition
Approach
| Consideration | Notes |
|---|---|
| Oral Intake | Offer sips if patient desires. Do NOT force. |
| Clinically Assisted Hydration (IV/SC) | Not routinely needed in dying phase. May increase secretions, oedema. Discuss with patient/family. |
| Individualised Decision | Weigh burdens vs benefits. Consider patient's wishes. |
| MCA | If patient lacks capacity, act in Best Interests. Consult family. |
7. Communication
Key Points
| Principle | Detail |
|---|---|
| Honest, Compassionate Communication | Explain what is happening. Answer questions. |
| Avoid Medical Jargon | Use clear language ("Dying", "End of life"). |
| Involve Family | Explain signs of dying. What to expect. |
| Discuss Treatment Goals | Shift from curative to comfort. |
| Preferred Place of Death | Home, Hospice, Hospital? Facilitate where possible. |
| Spiritual / Religious Needs | Offer chaplaincy. Respect beliefs. |
8. Care After Death
| Aspect | Notes |
|---|---|
| Verification of Death | By trained clinician. Document time. |
| Certification of Death (MCCD) | Death certificate. Notify Coroner if needed. |
| Support for Family | Bereavement support. Information on next steps. |
| Last Offices | Respectful care of the body. Cultural/Religious considerations. |
| Debrief for Staff | Especially after difficult deaths. |
9. Evidence & Guidelines
Key Guidelines
| Guideline | Organisation | Notes |
|---|---|---|
| NICE NG31 | NICE | Care of Dying Adults in the Last Days of Life. |
| One Chance to Get It Right (2014) | Leadership Alliance for the Care of Dying People | 5 Priorities of Care. |
| BNF Palliative Care Section | BNF | Prescribing guidance. |
10. Exam Scenarios
Scenario 1:
- Stem: A terminally ill patient is in the last days of life. What anticipatory medications should be prescribed?
- Answer: Morphine (Pain), Midazolam (Agitation), Hyoscine Butylbromide (Secretions), Levomepromazine (Nausea).
Scenario 2:
- Stem: The family of a dying patient is distressed by "Death Rattle" (Noisy breathing). What should you tell them?
- Answer: The patient is usually unaware. The noise is caused by secretions. Repositioning helps. Anticholinergics reduce new secretion production.
Scenario 3:
- Stem: What should be considered before diagnosing dying?
- Answer: Exclude reversible causes of deterioration (Infection, Hypercalcaemia, Drug toxicity, Dehydration, Acute events).
11. Patient/Family Explanation
What is happening?
We believe [Name] is in the final days of their life. This is part of their illness, and there is no further treatment that would help them get better. Our focus now is to make sure they are comfortable and peaceful.
What will we do?
- Keep them comfortable: We will give medications for any pain, distress, or discomfort.
- Support you: We are here to answer your questions and support you through this.
- Respect their wishes: We will follow their care plan and preferences.
What should you expect?
- They may become sleepier and less aware.
- Breathing may change.
- Eating and drinking will reduce.
- This is a natural part of the dying process.
12. Quality Markers: Audit Standards
| Standard | Target |
|---|---|
| Dying recognised and documented | 100% |
| Anticipatory medications prescribed | 100% |
| Communication with patient/family documented | 100% |
| Individual care plan in place | 100% |
14. Historical Context
- Liverpool Care Pathway (LCP): Developed 1990s. Widely used. Phased out 2014 following concerns about misuse (Inadequate communication, Premature use).
- One Chance to Get It Right (2014): Replaced LCP. Emphasises individualised care and 5 Priorities.
15. References
- NICE NG31. Care of Dying Adults in the Last Days of Life. nice.org.uk
- One Chance to Get It Right (2014). Leadership Alliance for the Care of Dying People. gov.uk
Last Reviewed: 2025-12-24 | MedVellum Editorial Team
Medical Disclaimer: MedVellum content is for educational purposes and clinical reference. End-of-life care should be delivered by trained healthcare professionals with sensitivity and compassion.