Palliative: End of Life Care

• The last days of life: Recognising Dying | Talking with the Patient and Family | An Individual Care Plan | Eating, Drinking and Hydration | Place of Care and Rapid Discharge
• Medicines: Anticipatory Medicines | Syringe Pumps | Symptoms in the Last Days | End-of-Life Emergencies | Palliative Sedation
• Ethics and law: Withholding and Withdrawing Treatment | Requests to Hasten Death
• After death: Verifying Death | Death Certification and the Coroner | Care After Death and Bereavement
• Revision: Drug Reference Table | Spot the Diagnosis | Exam-style Scenarios | Key Points | Guidelines and Further Reading

🌙 End-of-life care is care in the last days and hours of life. There is only one chance to get it right - and how someone dies stays with their family for ever. Good care means recognising dying, talking honestly, keeping the person comfortable, involving those who matter to them, and caring for the family after death. Symptom control earlier in illness is covered in the Palliative Symptom Control chapter.
Your four questions for every patient: Is this person likely to be dying in the next hours or days - and could anything still be reversible? Do they and their family know, and what do they want? Are comfort and anticipatory medicines in place, and are unhelpful treatments stopped? Who will support the family, and what happens after death?

Recognising Dying

Signs that a person may be in the last days of life (NICE NG31):

• Increasing weakness and fatigue - bedbound, sleeping most of the time.
• Reduced intake of food and fluids; difficulty swallowing tablets.
• Reduced consciousness; withdrawal; confusion or agitation.
• Changes in breathing - irregular, Cheyne–Stokes breathing, pauses (apnoea), noisy secretions.
• Mottled, cool skin (hands, feet, knees); peripheral cyanosis.
• Falling urine output; changes in pulse and BP.
• Gradual decline over days, despite treatment.

Key points:

• Dying is often uncertain - some people improve. Be honest about this uncertainty.
• Look for reversible causes of deterioration that the person would want treated:
  • Infection.
  • Opioid toxicity.
  • Hypercalcaemia.
  • Dehydration.
  • Hypoglycaemia.
  • Urinary retention.
  • Constipation.
• A senior decision with the multidisciplinary team, involving the patient where possible and those important to them.
• Review at least daily - and change the plan if the person improves.

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Talking with the Patient and Family

• Tell the person (if they want to know) and those important to them that death is likely soon. Use clear words - "dying" and "death" - not euphemisms.
• Explore:
  • Their understanding.
  • Fears and wishes.
  • Preferred place of death.
  • Religious, spiritual and cultural needs.
  • Who they want with them.
• Explain what to expect:
  • Sleeping more.
  • Changes in breathing and colour.
  • Noisy breathing.
  • Not eating or drinking.
  • That medicines will be given to keep the person comfortable.
• Ask how they would like to be contacted (including at night) if the person's condition changes.
• Practical support - open visiting, a side room if wanted, parking, facilities to stay, written information.
• Priorities for Care of the Dying Person (2014, after the Liverpool Care Pathway was withdrawn):
  • Recognise.
  • Communicate.
  • Involve.
  • Support.
  • Plan and do.
  Care must be individual, not a tick-box pathway.

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An Individual Care Plan

• Review all medicines - stop those that no longer help:
  • Statins.
  • Antihypertensives.
  • Vitamins and supplements.
  • Bisphosphonates.
  • Most cardiac drugs (unless relieving symptoms).
  • VTE prophylaxis (LMWH) in the dying.
• Continue or convert medicines that help comfort - analgesics, antiemetics, antiepileptics (convert to SC or buccal routes), steroids if helpful (or stop if no longer of benefit), Parkinson's drugs (rotigotine patch).
• Diabetes:
  • Simplify; stop most tablets.
  • Type 1 diabetes - continue a reduced dose of long-acting insulin to avoid DKA, with less frequent glucose checks.
  • Aim to prevent symptoms, not to achieve tight control.
• Stop routine observations, blood tests and other investigations that don't change comfort.
• Deactivate implantable defibrillators (ICDs) to prevent painful shocks - the pacing function can continue.
• Confirm the ReSPECT or DNACPR decision.
• Prescribe anticipatory medicines for common symptoms.
• Comfort care:
  • Mouth care.
  • Repositioning and pressure care (comfort-focused).
  • Continence care (catheter if needed for comfort).
  • Eye care.
• Spiritual and religious care - chaplaincy; rites such as last rites; specific needs at and after death.
• Document the plan and share it with the team and out-of-hours services.

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Eating, Drinking and Hydration

• Support the person to eat and drink for as long as they wish and can do so safely, even with swallowing difficulty ("eating and drinking with acknowledged risks").
• Thirst and dry mouth are relieved mainly by mouth care - moistening the mouth, lip balm, ice chips, sips - not by IV fluids.
• Clinically assisted hydration (SC or IV fluids):
  • An individual decision (NICE NG31). It may help some symptoms (e.g. delirium from dehydration), but can worsen secretions, breathlessness and oedema.
  • Discuss with the patient and family.
  • If given, review daily.
• Families often worry about "starving" or "dehydration" - explain that in dying, the body no longer needs or uses food and fluid in the same way, and that not eating doesn't cause distress in the dying person.
• Clinically assisted nutrition (tube feeding) is rarely appropriate in the last days of life.

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Place of Care and Rapid Discharge

• Most people say they would prefer to die at home, but many die in hospital. Ask early and plan.
• Rapid discharge home to die - can be arranged within hours with good coordination:
  • Fast-track NHS Continuing Healthcare funding for care at home.
  • Equipment - hospital bed, pressure mattress, commode.
  • District nurses and GP informed.
  • Anticipatory medicines supplied, with an authorisation chart for community nurses.
  • Syringe pump set up before transfer if needed.
  • ReSPECT or DNACPR form travels with the patient.
  • Transport (ambulance with a DNACPR form).
  • Family prepared and given contact numbers.
• Hospices - for complex symptoms or when home isn't possible.
• Care homes - avoid unnecessary admissions; support staff with anticipatory medicines and advance plans.
• Expected death at home - families should know whom to call (not 999 for an expected death), and that verification can wait until the morning.

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Anticipatory Medicines

"Just in case" medicines are prescribed in advance for the five commonest symptoms, so they can be given without delay (usually subcutaneously). Typical starting doses for adults (check local guidance, adjust for frailty and kidney function):

• Prescribe water for injection for dilution.
• State the maximum dose in 24 hours for each drug.
• Review use daily - if 2 or 3 doses are needed in 24 hours, consider a syringe pump.
• At home, supplies are kept in a "just in case" box with a community administration chart.

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Syringe Pumps

• What it is: A small portable pump (e.g. T34) that delivers medicines subcutaneously over 24 hours.
• When to use it:
  • The patient can't swallow.
  • Persistent vomiting.
  • Bowel obstruction.
  • Poor absorption.
  • Several as-needed doses each day.
• It doesn't mean death is imminent - it is just a route. Explain this to families.
• Calculating the dose:
  • From oral morphine: Divide the 24-hour total by 2 for SC morphine (e.g. MR morphine 30 mg twice daily = 60 mg a day oral = 30 mg SC over 24 hours).
  • New breakthrough dose - 1/6 of the 24-hour SC dose (e.g. 5 mg SC).
  • Add the total as-needed doses used in the past 24 hours to set the new 24-hour dose.
• Starting:
  • When converting from MR oral opioids, start the pump around the time the next oral dose would be due.
  • Fentanyl patches - leave the patch on, continue changing it, and use SC morphine or oxycodone (or a pump) for additional needs.
• Common combinations:
  • An opioid with midazolam, haloperidol or levomepromazine.
  • Glycopyrronium or hyoscine butylbromide.
  • Check compatibility (e.g. cyclizine can precipitate with saline or at high concentrations - usually dilute with water for injection).
• Monitoring:
  • Check the pump, line and site at least every 4 hours.
  • Watch for site inflammation (move the site; cyclizine and levomepromazine are irritant).
  • Check the volume infused.
• Breakthrough doses must still be prescribed alongside the pump.

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Symptoms in the Last Days

• Pain:
  • Continue analgesia - convert to SC or a pump when swallowing fails.
  • Assess non-verbal signs (grimacing, groaning, restlessness on movement).
  • Don't stop opioids suddenly.
• Terminal agitation and restlessness:
  • Check for reversible causes first:
    • Urinary retention (catheterise).
    • Constipation.
    • Pain.
    • Hypoxia.
    • Drug toxicity or withdrawal (nicotine, alcohol, benzodiazepines).
    • Fear and spiritual distress.
  • Midazolam 2.5–5 mg SC as needed (or via pump).
  • Haloperidol or levomepromazine if there is delirium with hallucinations or paranoia.
  • Calm environment; family presence.
• Noisy breathing ("death rattle") - from secretions the person can no longer clear:
  • Reposition (on the side, head slightly raised).
  • Explain to the family that it is usually not distressing to the person.
  • Antimuscarinics (glycopyrronium, hyoscine butylbromide) reduce new secretions but don't clear existing ones - start early.
  • Avoid deep suction (distressing).
  • Reduce or stop IV fluids.
• Breathlessness: Opioids, midazolam for anxiety, a fan, positioning. Oxygen only if it helps comfort.
• Nausea and vomiting: SC antiemetics (haloperidol, levomepromazine, cyclizine).
• Mouth care: Moisten the mouth regularly, lip balm, treat candida.
• Fever: Paracetamol (suppository or IV), cooling, fans. Antibiotics usually aren't helpful in the last days.
• Seizures (e.g. brain tumours): Continue antiepileptics by a non-oral route (SC levetiracetam via pump or midazolam in the pump). Buccal or SC midazolam 10 mg for a seizure.

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End-of-Life Emergencies

• Catastrophic bleeding (e.g. carotid blowout in head and neck cancer, massive haemoptysis, major GI bleed):
  • Anticipate it in high-risk patients - discuss with the patient (if appropriate) and family, and agree a plan.
  • Have ready:
    • Dark towels (green or red) to reduce the visual impact.
    • Gloves.
    • Midazolam.
  • During the bleed:
    • Stay with the patient - your presence matters most.
    • Apply pressure if possible.
    • Give midazolam (e.g. 10 mg buccal, IM or IV) if the patient is distressed. Death often happens within minutes, before drugs act.
  • Debrief family and staff afterwards.
• Spinal cord compression, hypercalcaemia, SVC obstruction - treat as emergencies if they fit the patient's goals and prognosis; otherwise focus on symptom control (see the Oncological Emergencies chapter).
• Acute breathlessness or choking - opioid and midazolam; sit up; calm presence.
• Severe pain crisis - rapid SC opioid titration; specialist palliative care advice.
• Status epilepticus - midazolam; continue antiepileptics via a non-oral route.

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Palliative Sedation

• Proportionate sedation - using the lowest dose of a sedative (usually midazolam, sometimes levomepromazine or phenobarbital) needed to relieve refractory suffering in the dying person.
• Refractory means all other reasonable treatments have failed or are unacceptable - e.g. severe agitation, intractable breathlessness or pain.
• Principles:
  • The intention is to relieve suffering, not to end life.
  • Doses are titrated to comfort.
  • Discussed with the patient (where possible) and family.
  • Specialist palliative care involvement.
  • Clear documentation.
• The doctrine of double effect - giving treatment intended to relieve symptoms is acceptable even if a possible side effect is shortening life, provided the intention is relief and the dose is proportionate. In practice, appropriately titrated opioids and sedatives do not hasten death.
• Continuous deep sedation until death is rarely needed and needs specialist advice.

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Withholding and Withdrawing Treatment

• No ethical or legal difference between not starting a treatment and stopping one that is no longer helping (GMC guidance).
• Doctors aren't obliged to provide treatment that won't benefit the patient. Patients and families can't demand clinically inappropriate treatment, but their views must be heard and second opinions offered if there is disagreement.
• Patients with capacity can refuse any treatment, including life-sustaining treatment (e.g. dialysis, NIV, antibiotics).
• Patients without capacity:
  • Decide in their best interests (Mental Capacity Act 2005).
  • Take account of past and present wishes, values and beliefs.
  • Consult those close to them, any LPA, and any valid ADRT.
  • An IMCA if there is no one to consult.
• Clinically assisted nutrition and hydration is a medical treatment (BMA/RCP/GMC 2018) - decided on best interests. The Court of Protection is only needed if there is disagreement or doubt.
• Treatment escalation plans - agree ceilings (e.g. ward-based care, no ICU, no NIV) in advance with the patient.
• Withdrawing ventilation (e.g. NIV in MND) - planned, with anticipatory sedation and opioids to prevent breathlessness and distress.
• Stopping dialysis - death usually follows in days to 2 weeks; symptom control (avoid morphine; use alfentanil or fentanyl).

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Requests to Hasten Death

• The law (England and Wales):
  • Euthanasia is unlawful (it is murder or manslaughter).
  • Assisting suicide is a crime under the Suicide Act 1961.
  • Doctors must not provide the means, or advice, to end a life.
• Proposed change:
  • The Terminally Ill Adults (End of Life) Bill passed the House of Commons in June 2025, but ran out of time in the House of Lords in April 2026 and has not become law.
  • It may be reintroduced. Scotland, the Isle of Man and Jersey have been considering separate legislation.
  • Check the current position.
• When a patient asks for help to die:
  • Listen and take the request seriously - it often reflects uncontrolled symptoms, fear of the future, depression, feeling a burden, or loss of control.
  • Explore the reasons; treat pain and other symptoms; assess for depression.
  • Offer specialist palliative care and psychological and spiritual support.
  • Explain clearly what you can and can't do within the law - including the right to refuse treatment and to have good symptom control.
  • Document the conversation; discuss with senior colleagues.
• Refusing treatment, stopping treatment, and proportionate symptom control are lawful and are not assisted dying.
• Patients may legally travel abroad (e.g. to Switzerland); doctors shouldn't help with arrangements but can provide records if requested (GMC and BMA guidance - seek advice).

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Verifying Death

Verification (confirming that death has occurred) can be done by a doctor or a trained registered nurse or paramedic. Following Academy of Medical Royal Colleges guidance:

• Confirm identity (wristband).
• Observe for at least 5 minutes to confirm cardiorespiratory arrest:
  • No central pulse.
  • No heart sounds.
  • No breathing effort.
• Then check:
  • Pupils fixed and dilated, with no response to light.
  • No corneal reflex.
  • No motor response to supraorbital pressure.
• Record:
  • The time of death (when verification was completed).
  • Who was present.
  • Whether there is an implanted device (pacemaker or ICD - deactivate an ICD; removal needed before cremation).
  • Any infection risk.
• Inform the family (if not present), the GP and relevant teams.
• Expected deaths at home - verification can wait for the community nurse or GP; don't call an ambulance.

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Death Certification and the Coroner

• Medical examiner system (statutory in England and Wales since September 2024): every death not investigated by the coroner is reviewed by an independent medical examiner, who:
  • Checks the cause of death.
  • Speaks to the bereaved family.
  • Spots concerns about care.
• Medical Certificate of Cause of Death (MCCD):
  • Completed by a doctor who attended the patient during their life (at any time).
  • Part 1 - the sequence leading to death (1a the immediate cause, 1b and 1c underlying causes).
  • Part 2 - other conditions that contributed but were not part of the sequence.
  • Avoid modes of death alone ("cardiac arrest", "old age" only in the very old with no other identifiable cause, and with care).
  • Avoid abbreviations.
• Refer to the coroner (Notification of Deaths Regulations 2019) when the death may be due to:
  • Unknown cause.
  • Violence, trauma or injury (including falls and fractures).
  • Self-harm, poisoning, or drug or alcohol use.
  • Neglect (including self-neglect) or failure of care.
  • Industrial disease (e.g. asbestos - mesothelioma).
  • A medical procedure, treatment or anaesthetic.
  • Death in custody or state detention (e.g. prison, police, sectioned under the Mental Health Act).
  • When no doctor who attended can certify, or the identity is unknown.
• Registration - the family registers the death (usually within 5 days) after the medical examiner's scrutiny.
• Cremation - the attending doctor completes the cremation form; pacemakers and some devices must be removed.
• Faith needs - some faiths (e.g. Muslim and Jewish communities) require burial as soon as possible. Medical examiners and coroners can often expedite.

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Care After Death and Bereavement

• Care after death:
  • Treat the person with dignity.
  • Respect cultural and religious wishes (washing, who may touch the body, prayers).
  • Allow family time with the person.
  • Offer keepsakes (handprints, locks of hair).
• Organ and tissue donation - England, Wales and Scotland have an "opt-out" system, but families are always consulted. Tissues (corneas, heart valves, skin) can be donated after many deaths. Check the NHS Organ Donor Register; involve the specialist nurse.
• Practical information for families - what happens next, the medical examiner call, registration, funeral directors, belongings.
• Bereavement:
  • Grief is normal and varied.
  • Prolonged grief disorder - intense yearning and functional impairment beyond 12 months - needs specialist support.
  • Risk factors for complicated grief:
    • Sudden or traumatic death.
    • Death of a child.
    • Poor support.
    • Previous mental illness.
    • A difficult relationship.
  • Signpost bereavement services (hospice services, Cruse Bereavement Support); GP follow-up.
  • Children need honest, age-appropriate information and inclusion.
• Staff wellbeing - deaths affect staff too. Debriefs, Schwartz rounds and support are important.

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Drug Reference Table

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Spot the Diagnosis

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Exam-style Scenarios

1. An 84-year-old with metastatic lung cancer is now bedbound, drowsy and unable to swallow tablets. He takes MR morphine 20 mg twice daily.
Answer: Recognise likely dying; individual care plan.

• Talk with him (if possible) and his family.
• Stop non-essential drugs; confirm the ReSPECT form.
• Syringe pump: morphine 20 mg SC over 24 hours (40 mg oral ÷ 2); breakthrough morphine 2.5–5 mg SC hourly as needed.
• Anticipatory midazolam, haloperidol and glycopyrronium.
• Mouth care; review daily.

2. A dying woman becomes restless and agitated overnight.
Answer: Look for reversible causes first.

• Check for pain, a full bladder, constipation, hypoxia and drug causes.
• Calm environment; family presence.
• Midazolam 2.5–5 mg SC; haloperidol if delirium with hallucinations.
• Consider a pump if repeated doses are needed.

3. A man with end-stage kidney failure has stopped dialysis and is now dying. He has pain.
Answer: Avoid morphine and diamorphine (metabolites accumulate).

• Use SC alfentanil or low-dose oxycodone, or fentanyl (specialist advice).
• Midazolam at low doses; glycopyrronium for secretions.
• Review fluid input.

4. A patient dies 2 days after an elective hip replacement.
Answer: Refer to the coroner - death after a procedure or anaesthetic.

• Don't issue an MCCD until the coroner advises.
• Inform the medical examiner office; support the family.

5. A 70-year-old with advanced cancer says she wants you to help her die.
Answer: Listen and explore.

• Ask about her fears, symptoms, mood and sense of being a burden; treat pain and depression.
• Offer specialist palliative and psychological support.
• Explain that assisting death is unlawful, but she can refuse treatment and will be kept comfortable.
• Document; discuss with seniors.

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Key Points

• Recognise dying: increasing weakness, bedbound, reduced intake, drowsiness, breathing changes, mottling. Look for reversible causes; review daily.
• Communicate clearly - use the word "dying", explain what to expect, and involve those important to the patient.
• Individual care plan: stop unhelpful drugs and tests, deactivate ICDs, confirm ReSPECT, prescribe anticipatory medicines.
• Anticipatory medicines cover pain or breathlessness (opioid), nausea (haloperidol or levomepromazine), agitation (midazolam) and secretions (glycopyrronium or hyoscine butylbromide).
• Oral morphine to SC morphine: divide by 2; breakthrough dose is 1/6 of the 24-hour dose.
• Use a syringe pump when swallowing fails or 2–3 as-needed doses are needed a day; it doesn't mean death is imminent.
• Avoid morphine in kidney failure - use alfentanil, fentanyl or oxycodone.
• Mouth care relieves thirst; clinically assisted hydration is an individual decision.
• Agitation: exclude retention, constipation and pain before sedation.
• Secretions: reposition, explain, give antimuscarinics early; avoid suction.
• Catastrophic bleed: stay with the patient, dark towels, midazolam.
• Proportionate sedation for refractory suffering is lawful; euthanasia and assisted suicide are not (England and Wales).
• Every death is reviewed by a medical examiner unless referred to the coroner; know the coroner referral criteria.
• Support families and staff after death; respect faith and cultural needs.

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Guidelines and Further Reading

• NICE NG31: Care of dying adults in the last days of life
• NICE NG61: End of life care for infants, children and young people
• Leadership Alliance for the Care of Dying People: One Chance to Get It Right - Priorities for Care of the Dying Person (2014)
• GMC: Treatment and care towards the end of life (2022)
• Academy of Medical Royal Colleges: Code of practice for the diagnosis and confirmation of death
• Department of Health and Social Care: Medical examiner system and death certification reforms (2024)
• Notification of Deaths Regulations 2019 - guidance for registered medical practitioners
• Palliative Care Formulary; local anticipatory prescribing and syringe pump guidance
• Cruse Bereavement Support; Marie Curie
• BNF - for current doses

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