Palliative Care

Key Facts

Pain management in palliative care requires regular assessment, individualised treatment, and attention to all dimensions of suffering.

Epidemiology

• Pain affects 50% at diagnosis and 70-80% with advanced cancer
• 10-20% have refractory pain requiring specialist intervention
• Non-cancer conditions also cause significant pain: heart failure, COPD, renal failure, neurological disease

Aetiology

• Cancer-related (60-70%): direct tumour involvement (bone, nerve, visceral, soft tissue)
• Treatment-related (20%): post-surgical, chemotherapy-induced neuropathy, radiation fibrosis
• Concurrent (10-20%): musculoskeletal, neuropathic, non-related conditions

Pathophysiology

• Nociceptive (somatic): well-localised, aching; bone, soft tissue
• Nociceptive (visceral): poorly localised, cramping, referred; organ involvement
• Neuropathic: burning, shooting, allodynia; nerve compression/invasion
• Mixed: combination of mechanisms (very common in cancer pain)

Pain Assessment

• Location, character, severity (0-10 NRS)
• Temporal pattern: constant, intermittent, incident, breakthrough
• Radiation and referral patterns
• Aggravating and relieving factors
• Impact on function, sleep, mood
• Current analgesic use and effectiveness
• Side effects of treatment

Pain Types in Palliative Care

• Background pain: constant, present most of the time
• Breakthrough pain: transient flare on controlled background (spontaneous or incident-related)
• Incident pain: predictable, related to specific activity (movement, dressing change)
• End-of-dose pain: pain returning before next scheduled dose

Red Flags

• Back pain with neurological signs (spinal cord compression - emergency)
• Severe uncontrolled pain despite escalating opioids
• Opioid toxicity: myoclonus, confusion, hallucinations, respiratory depression
• Pain crisis (severe uncontrolled pain requiring emergency management)

Bedside

• Pain assessment (NRS, body map, Brief Pain Inventory)
• Neurological examination if neuropathic component
• Medication chart review

Bloods

• U&Es (renal function for opioid dosing)
• Calcium (hypercalcaemia causing pain)
• LFTs (hepatic metabolism)

Imaging

• Targeted imaging of pain site (X-ray, CT, MRI)
• MRI spine: if cord compression suspected (emergency)

Special Tests

• Specialist pain assessment if refractory
• Psychological assessment (pain catastrophising, depression)

Non-pharmacological

• Patient education about pain management goals
• Psychological support (CBT, relaxation, mindfulness)
• Physiotherapy (gentle exercise, positioning)
• TENS (adjunct for localised pain)
• Heat/cold therapy
• Complementary therapies (massage, acupuncture)

Pharmacological

• Step 1: paracetamol 1g QDS ± NSAID (ibuprofen 400mg TDS or naproxen 250-500mg BD - with PPI cover)
• Step 2: codeine 30-60mg QDS or tramadol 50-100mg QDS (increasingly bypassed in favour of low-dose strong opioid)
• Step 3:
  • Oral morphine: 5-10mg IR 4-hourly; titrate by 30-50% every 24-48 hours until pain controlled
  • Convert to MR: total 24h IR dose → divide by 2 for BD MR dosing (MST Continus, Zomorph)
  • Breakthrough: 1/6th of 24-hour morphine dose, IR, PRN up to hourly
  • Oxycodone: alternative; start 5mg IR 4-6 hourly or 10mg MR BD (equianalgesic: oral morphine:oxycodone = 1.5-2:1)
  • Fentanyl patch: 12-25mcg/h every 72 hours (stable pain, swallowing difficulty)
  • Buprenorphine patch: 5-70mcg/h every 7 days
• Adjuvants:
  • Neuropathic: amitriptyline 10-75mg ON; gabapentin 300-1,800mg/day; pregabalin 75-300mg BD
  • Bone: NSAID ± dexamethasone 4-8mg OM; zoledronic acid 4mg IV monthly or denosumab 120mg SC monthly
  • Muscle spasm: baclofen 5-20mg TDS; diazepam 2-5mg TDS
  • Visceral colic: hyoscine butylbromide 20mg QDS
• Always co-prescribe: laxatives (senna 15mg ON + docusate 100mg BD); antiemetic PRN (metoclopramide 10mg TDS or haloperidol 1.5mg ON)

Surgical/Interventional

• Palliative radiotherapy: bone mets (8Gy single fraction - 60-80% response)
• Nerve blocks: coeliac plexus (pancreatic), paravertebral, intercostal
• Intrathecal drug delivery: refractory pain (morphine ± bupivacaine ± ziconotide)
• Vertebroplasty/kyphoplasty: painful vertebral fractures
• Cordotomy: unilateral cancer pain (specialist centres)

Referral Criteria

• Pain not controlled with Step 3 opioids + adjuvants: specialist palliative care
• Neuropathic pain not responding to first-line: pain specialist
• Interventional procedures needed: pain team
• Opioid toxicity or difficulty with rotation: specialist input

• >80% of cancer pain can be controlled with WHO ladder + adjuvants
• 10-20% have refractory pain requiring specialist intervention
• Palliative RT for bone pain: response in 60-80%; complete response in 30%
• Good pain management significantly improves quality of life, function, and mood
• Untreated pain is associated with depression, anxiety, and reduced survival

WHO Analgesic Ladder

Opioid Equianalgesic Doses

Key Facts

Opioid conversion is a high-risk prescribing activity. Errors in conversion cause significant harm. Always use conversion tables, show calculations, and seek advice if unsure.

Epidemiology

• Opioid rotation is needed in approximately 20-30% of patients on long-term opioids
• Common reasons: side effects (nausea, confusion, myoclonus), renal impairment (accumulation of metabolites), route change (inability to swallow)

Aetiology

Indications for opioid conversion:

• Route change: oral to subcutaneous/transdermal (swallowing difficulty, bowel obstruction, dying patient)
• Opioid rotation: intolerable side effects despite dose titration, poor analgesia despite dose escalation, renal impairment (morphine → oxycodone or fentanyl), development of opioid-induced hyperalgesia
• Formulation change: immediate-release to modified-release

Pathophysiology

• Incomplete cross-tolerance: different opioids act on different μ-receptor subtypes and have different receptor binding profiles; tolerance to one opioid does not fully transfer to another
• This is why dose reduction (25-50%) is needed when switching opioids
• Renal impairment: morphine-6-glucuronide (active metabolite) accumulates → toxicity; switch to oxycodone, fentanyl, or buprenorphine (hepatically metabolised)
• Fentanyl: highly lipophilic; onset and offset depend on tissue distribution; requires stable pain (not for titration)

When to Convert

• Patient unable to swallow (convert oral → SC or transdermal)
• Intolerable opioid side effects (rotate to different opioid)
• Renal impairment (switch from morphine to safer alternative)
• Starting syringe driver (convert oral to CSCI)
• Stepping up from weak to strong opioid

Assessment Before Conversion

• Current opioid, dose, route, frequency
• Total 24-hour opioid consumption (including breakthrough doses used)
• Pain control (adequate or inadequate?)
• Side effects
• Renal and hepatic function
• Reason for conversion

Red Flags

• Prescriber unsure of conversion ratios (seek specialist advice)
• Large dose conversions (high risk of error)
• Renal impairment + morphine (accumulation risk)
• Patient on mixed opioid agonists/partial agonists (buprenorphine + morphine - interactions)

Bedside

• Current pain score
• Current opioid dose (include all breakthrough doses used in last 24-48h)
• Calculate total 24-hour morphine equivalent dose
• Check renal function and hepatic function

Bloods

• U&Es (essential - renal function affects opioid choice)
• LFTs (hepatic function affects metabolism)

Imaging

• Not applicable to conversion itself

Special Tests

• Conversion calculation (show working, document clearly)
• Double-check with pharmacist or palliative care team

Key Conversion Ratios

• Oral morphine → SC/IV morphine: ÷ 2 (e.g. 60mg PO = 30mg SC)
• Oral morphine → SC/IV diamorphine: ÷ 3 (e.g. 60mg PO = 20mg SC diamorphine)
• Oral morphine → oral oxycodone: ÷ 1.5-2 (e.g. 30mg morphine ≈ 15-20mg oxycodone)
• Oral oxycodone → SC oxycodone: ÷ 1.5-2 (e.g. 20mg PO = 10-13mg SC)
• Oral morphine → fentanyl patch: use conversion table (60-90mg/24h oral morphine = 25mcg/h patch)
• Oral morphine → oral hydromorphone: ÷ 5 (e.g. 50mg morphine ≈ 10mg hydromorphone)

Conversion Steps

1. Calculate total 24-hour oral morphine equivalent (include MR + IR + breakthrough doses used)
2. Apply conversion ratio to target opioid
3. If rotating opioids: reduce by 25-50% for incomplete cross-tolerance
4. Calculate new breakthrough dose (1/6th of new 24h total)
5. Document calculation clearly in notes and prescription
6. Monitor closely after conversion (pain, sedation, respiratory rate)

Pharmacological

• Fentanyl patch: apply when starting; takes 12-24 hours to reach therapeutic levels; continue oral opioid for first 12 hours
• Syringe driver (CSCI): convert oral dose to SC diamorphine (÷3) or SC morphine (÷2); run over 24 hours
• Renal impairment: avoid morphine; use oxycodone (÷1.5-2 from morphine), fentanyl, or alfentanil in CSCI

Surgical/Interventional

• Not applicable

Referral Criteria

• Complex conversions: palliative care pharmacist or specialist
• High-dose opioid conversions (>300mg oral morphine equivalent/day): specialist mandatory
• Methadone conversion: specialist only (complex, variable half-life)
• Mixed agonist/antagonist issues: specialist advice

• Safe opioid conversion maintains pain control while reducing side effects
• Errors in conversion can cause significant harm (overdose or under-dosing)
• Most conversions are straightforward with appropriate use of conversion tables
• Close monitoring in first 24-48 hours after conversion is essential

Opioid Equianalgesic Conversion Table

Opioid Safety in Renal Impairment

Key Facts

Rational antiemetic prescribing in palliative care is based on understanding the neuropharmacology of nausea and matching the antiemetic to the underlying cause.

Epidemiology

• Nausea: 40-70% of advanced cancer patients
• Vomiting: 30% of advanced cancer patients
• Often multifactorial
• Significantly impacts quality of life and oral medication absorption

Aetiology

• Chemical/metabolic (CTZ): drugs (opioids, chemotherapy), renal failure (uraemia), hypercalcaemia, infection
• Gastric stasis: opioids, autonomic neuropathy, hepatomegaly, ascites, gastroparesis
• Bowel obstruction: tumour, adhesions, constipation
• Raised ICP: brain metastases, leptomeningeal disease
• Vestibular: opioids (early), motion, labyrinthine disease
• Psychogenic: anxiety, anticipatory nausea
• Serosal/peritoneal: peritoneal metastases, liver capsule stretch

Pathophysiology

• Vomiting centre (medulla): final common pathway; receives input from CTZ, GI tract, vestibular system, higher cortical centres
• CTZ (area postrema): outside blood-brain barrier; responds to circulating toxins; D2 and 5HT3 receptors
• GI tract: vagal afferents from gut (5HT3, 5HT4 receptors); stretch and chemo receptors
• Vestibular: H1 and mACh receptors
• Higher centres: cortical input (anticipatory, anxiety)

Assessment

• Timing (constant, intermittent, related to food/medication/movement)
• Volume and content of vomitus
• Associated symptoms (pain, constipation, headache, vertigo)
• Medication review (opioids started recently?)
• Abdominal examination (distension, bowel sounds, hepatomegaly)
• Neurological examination if raised ICP suspected

Red Flags

• Faeculent vomiting (bowel obstruction)
• Projectile vomiting with headache (raised ICP)
• Haematemesis (GI bleeding)
• Signs of dehydration
• Complete bowel obstruction (absolute constipation + vomiting + distension)

Bedside

• Abdominal examination (distension, bowel sounds, tenderness)
• Medication chart review
• Constipation assessment (DRE if appropriate)
• Neurological examination (if raised ICP suspected)

Bloods

• U&Es (renal failure, dehydration)
• Calcium (hypercalcaemia - common cause)
• LFTs (hepatic causes)
• FBC (infection)

Imaging

• AXR: if bowel obstruction suspected
• CT abdomen: bowel obstruction assessment, level of obstruction
• CT head: if raised ICP suspected

Special Tests

• Not usually needed beyond clinical assessment and targeted investigations

Non-pharmacological

• Identify and treat reversible causes (constipation, hypercalcaemia, medications)
• Small, frequent meals; avoid strong smells
• Cool, fresh air
• Psychological support (anticipatory nausea: relaxation, CBT)

Pharmacological

• Opioid-induced (CTZ):
  • Haloperidol 0.5-1.5mg PO/SC ON (D2 antagonist at CTZ)
  • Usually settles within 5-7 days (tolerance develops)
  • If persists: consider opioid rotation
• Gastric stasis:
  • Metoclopramide 10mg TDS PO/SC (prokinetic + D2 antagonist)
  • AVOID in complete bowel obstruction
• Bowel obstruction (inoperable):
  • Cyclizine 150mg/24h CSCI (H1 antagonist)
  • Hyoscine butylbromide 60-120mg/24h CSCI (reduces secretions and colic)
  • Octreotide 300-600mcg/24h CSCI (reduces GI secretions)
  • Dexamethasone 6-8mg IV/SC (reduces peri-tumoral oedema; may resolve partial obstruction)
  • Venting gastrostomy: for intractable vomiting
• Raised ICP:
  • Dexamethasone 8-16mg daily (reduces oedema)
  • Cyclizine 50mg TDS
• Vestibular: cyclizine 50mg TDS or prochlorperazine 5mg TDS (NOT in Parkinson's)
• Broad-spectrum (cause unclear/multiple causes):
  • Levomepromazine 6.25-25mg ON PO/SC (blocks D2, 5HT2, H1, mACh)
  • Olanzapine 2.5-5mg ON (emerging evidence as broad-spectrum antiemetic)

Surgical/Interventional

• Venting PEG/gastrostomy: for inoperable bowel obstruction with intractable vomiting
• Stenting: for gastric outlet or duodenal obstruction
• Surgical bypass: palliative, in selected patients with good PS

Referral Criteria

• Refractory nausea/vomiting: specialist palliative care
• Bowel obstruction: surgical review for operability; palliative care if inoperable
• Raised ICP: oncology/neurosurgery

• Opioid-induced nausea usually self-limiting (5-7 days; tolerance develops)
• Most nausea can be controlled with appropriate mechanism-based antiemetics
• Bowel obstruction-related nausea: can usually be managed medically if surgery not appropriate
• Refractory nausea significantly impacts quality of life and oral medication absorption

Antiemetic Selection by Mechanism

Key Facts

Breathlessness in palliative care is often irreversible and multifactorial. The focus is on reducing the distressing sensation rather than treating the underlying cause.

Epidemiology

• Affects 50-70% of advanced cancer patients; >90% with advanced COPD/HF
• Most common symptom in last weeks of life (apart from fatigue)
• Strongly associated with anxiety, panic, and reduced quality of life

Aetiology

• Cancer-related: lung cancer, pleural effusion, lymphangitis carcinomatosa, SVC obstruction, pericardial effusion, ascites (diaphragm splinting), tumour in airway
• Treatment-related: pneumonitis (RT, immunotherapy), pulmonary fibrosis (bleomycin), cardiomyopathy (doxorubicin)
• Comorbid: COPD, heart failure, anaemia, pulmonary embolism, infection
• General: anxiety, deconditioning, cachexia

Pathophysiology

• Breathlessness perception involves afferent signals from chemoreceptors (CO2, O2), mechanoreceptors (lung stretch, chest wall), and cortical processing (anxiety amplifies perception)
• Opioids reduce central perception of breathlessness via μ-receptors in brainstem and cortex
• Fan/cool air stimulates V2 branch of trigeminal nerve → reduces breathlessness perception ("open window" effect)

Assessment

• Subjective severity (0-10 NRS or modified Borg scale)
• Temporal pattern (constant, exertional, paroxysmal, nocturnal)
• Associated symptoms (cough, wheeze, chest pain, anxiety, panic)
• Functional impact (what can/cannot do because of breathlessness)
• Psychological impact (fear, anxiety, depression)
• Current interventions and their effectiveness

Red Flags

• Acute deterioration: PE, pneumothorax, cardiac tamponade, SVC obstruction
• Stridor (airway obstruction - emergency)
• Massive haemoptysis
• Severe anxiety/panic attacks
• Terminal breathlessness in last days of life

Bedside

• SpO2, respiratory rate, heart rate
• Breathlessness assessment (NRS, mMRC scale)
• Chest examination
• Anxiety screening

Bloods

• FBC (anaemia)
• BNP (heart failure)
• D-dimer (if PE suspected and would change management)

Imaging

• CXR: pleural effusion, pneumonia, lung mass, collapse
• CTPA: PE (if would change management)
• CT thorax: tumour assessment

Special Tests

• ABG: type 1 or 2 respiratory failure (if would change management)
• Echocardiography: pericardial effusion, cardiac function
• Lung function tests: COPD assessment (if new diagnosis)

Non-pharmacological (FIRST-LINE)

• Handheld fan directed at face (trigeminal nerve stimulation; as effective as oxygen for non-hypoxic breathlessness)
• Breathing techniques: pursed-lip breathing, diaphragmatic breathing
• Positioning: upright, leaning forward (tripod position)
• Pacing and energy conservation: plan activities, rest between tasks
• Anxiety management: relaxation techniques, CBT, mindfulness
• Pulmonary rehabilitation: where appropriate (COPD, deconditioning)
• Cool, well-ventilated room: open window

Pharmacological

• Low-dose opioids:
  • Opioid-naive: morphine 1-2.5mg PO 4-hourly PRN or 5-10mg MR OD
  • Already on opioids: increase by 25% if breathlessness is a significant symptom
  • SC morphine 1-2.5mg PRN if unable to swallow
• Benzodiazepines:
  • Lorazepam 0.5-1mg SL PRN (anxiety-related breathlessness)
  • Midazolam 2.5-5mg SC PRN (terminal breathlessness)
• Corticosteroids:
  • Dexamethasone 4-8mg daily: lymphangitis carcinomatosa, SVC obstruction, tumour-related airway narrowing
• Oxygen: only if hypoxic (SpO2 <92%); short-burst oxygen for exertional desaturation
• Nebulised saline (0.9%): may help with sputum clearance
• Bronchodilators: if reversible airway obstruction (salbutamol, ipratropium)

Surgical/Interventional

• Pleural aspiration/drainage: for symptomatic pleural effusion
• Indwelling pleural catheter (IPC): for recurrent effusions
• Pleurodesis: talc (for recurrent malignant pleural effusion)
• SVC stent: for SVC obstruction
• Airway stenting: for endobronchial obstruction
• Pericardiocentesis: for cardiac tamponade

Referral Criteria

• Refractory breathlessness: specialist palliative care
• Pleural effusion: respiratory/interventional service
• SVC obstruction: oncology emergency
• Complex anxiety: psychology/psychiatry

• Non-pharmacological interventions (fan, breathing techniques): effective in 30-50% of patients
• Low-dose opioids: reduce breathlessness perception safely; do NOT cause respiratory depression at appropriate palliative doses
• Oxygen: no benefit over fan in non-hypoxic breathlessness
• Breathlessness in last days of life: usually manageable with SC morphine + midazolam
• Breathlessness is a strong predictor of mortality in advanced cancer and COPD

Breathlessness Management Algorithm

Key Evidence

Key Facts

Constipation is one of the most common and distressing symptoms in palliative care. Prevention is key, particularly with opioid use.

Epidemiology

• 50-90% of palliative care patients experience constipation
• Almost universal with opioid therapy
• Often undertreated despite being predictable and preventable

Aetiology

• Medications: opioids (most common cause), anticholinergics, 5HT3 antagonists (ondansetron), iron, calcium
• Disease-related: intra-abdominal tumour, spinal cord compression, hypercalcaemia, autonomic neuropathy
• General: reduced oral intake, dehydration, immobility, weakness, confusion

Pathophysiology

• Opioid-induced: μ-receptor activation in myenteric and submucosal plexus → reduced peristalsis, increased segmental contractions, increased water absorption, increased anal sphincter tone
• Tolerance to constipation does NOT develop (unlike nausea, sedation)
• Reduced mobility and oral intake compound the problem
• Dehydration increases colonic water absorption further

Symptoms

• Infrequent bowel movements
• Hard stools (Bristol 1-2)
• Straining
• Abdominal bloating, discomfort, pain
• Nausea and anorexia (from faecal loading)
• Overflow diarrhoea (faecal impaction)

Complications in Palliative Care

• Faecal impaction with overflow
• Nausea and vomiting (impairs oral medication absorption)
• Urinary retention
• Delirium
• Intestinal obstruction
• Rectal pain and haemorrhoids

Red Flags

• Absolute constipation with vomiting/distension (bowel obstruction)
• New constipation in cancer patient (spinal cord compression, bowel obstruction)
• Faecal impaction causing delirium
• Overflow diarrhoea being treated with anti-diarrhoeals (dangerous mistake)

Bedside

• Abdominal palpation (faecal loading)
• DRE (impaction, rectal mass)
• Bowel chart (frequency, Bristol Stool type)
• Medication review

Bloods

• Calcium (hypercalcaemia)
• U&Es (dehydration)
• TFTs (hypothyroidism, if new presentation)

Imaging

• AXR: if significant faecal loading or obstruction suspected
• CT abdomen: if bowel obstruction suspected

Special Tests

• Generally clinical assessment is sufficient in palliative care

Non-pharmacological

• Maintain oral fluid intake where possible
• Encourage mobility (as tolerated)
• Privacy and comfort for toileting
• Footstool (optimal defaecation position)

Pharmacological

• Prevention with all opioids:
  • Senna 15mg ON (stimulant) + docusate 100mg BD (softener)
  • Or macrogol (Movicol) 1-2 sachets daily
• Treatment escalation:
  • Step 1: Senna + docusate → increase doses (senna up to 30mg BD; docusate up to 200mg TDS)
  • Step 2: Add/switch to macrogol 1-3 sachets daily
  • Step 3: Add bisacodyl 10mg ON (stimulant)
  • Step 4: Rectal measures - glycerine suppositories, bisacodyl suppositories, phosphate enema, arachis oil enema (soften hard impaction overnight then phosphate enema)
• Faecal impaction:
  • Soft: high-dose macrogol (8 sachets/day for up to 3 days)
  • Hard: arachis oil enema overnight → phosphate enema; digital manual evacuation (under sedation with midazolam if needed)
• Refractory OIC:
  • Naloxegol 25mg OD (oral PAMORA; blocks peripheral μ-receptors without affecting central analgesia)
  • Methylnaltrexone 12mg SC (alternative PAMORA; for patients who cannot swallow)
• Bowel obstruction: see specific management (avoid stimulant laxatives; medical management with hyoscine + cyclizine ± octreotide)

Surgical/Interventional

• Manual evacuation (for hard impaction in rectum)
• Stoma formation (rarely; for intractable obstruction)

Referral Criteria

• Refractory constipation despite optimised laxatives: specialist palliative care
• Suspected bowel obstruction: surgical/oncological review
• Significant faecal impaction causing complications: urgent assessment

• Prophylactic laxatives prevent OIC in most patients
• Constipation in palliative care is treatable but requires proactive management
• Untreated constipation causes significant distress, nausea, and impairs oral medication absorption
• Naloxegol/methylnaltrexone effective in 40-50% of refractory OIC cases
• Bowel function should be assessed at every palliative care review

Stepwise Approach to Constipation in Palliative Care

Rectal Measures for Faecal Impaction

Key Facts

Terminal agitation is one of the most distressing symptoms for families witnessing the dying process. Prompt identification of reversible causes and compassionate use of sedation are essential.

Epidemiology

• Affects 25-85% of dying patients (depending on definition and setting)
• More common in younger patients, those with brain metastases, and those on high-dose opioids
• May be the most distressing symptom for families

Aetiology

Reversible causes (check first):

• Urinary retention (catheterise)
• Faecal impaction (rectal examination)
• Pain (uncontrolled; adjust analgesia)
• Opioid toxicity (myoclonus, confusion; reduce/rotate opioid)
• Medication side effects (anticholinergics, steroids)
• Hypercalcaemia
• Hypoxia
• Anxiety, fear, spiritual distress

Irreversible causes:

• Multi-organ failure
• Cerebral hypoxia
• Metabolic encephalopathy
• Brain metastases

Pathophysiology

• Terminal delirium: multifactorial neurotransmitter imbalance in the context of dying
• Hepatic/renal failure → accumulation of metabolites and toxins
• Cerebral hypoperfusion → cortical dysfunction
• Drug metabolite accumulation (morphine-6-glucuronide, etc.)
• May represent existential/spiritual distress in some patients

Features

• Restlessness, fidgeting, picking at bedclothes
• Agitation, moaning, calling out
• Confusion, disorientation
• Hallucinations (visual or auditory)
• Attempting to get out of bed
• Facial grimacing (may indicate pain)
• Fluctuating consciousness
• Myoclonus (may indicate opioid toxicity)

Assessment

• Is the patient in pain? (facial grimacing, groaning on movement)
• Is there urinary retention? (palpate bladder or bladder scan)
• Is there faecal impaction? (DRE if appropriate)
• Review medication chart (opioid toxicity? recently stopped medications?)
• Is this expected dying process or acute deterioration with treatable cause?

Red Flags

• Myoclonus with agitation (opioid toxicity - reduce/rotate)
• Palpable bladder (urinary retention - catheterise)
• Seizures (consider midazolam, review anticonvulsants)
• Severe uncontrolled distress despite medication (consider palliative sedation)

Bedside

• Reversible cause check: urinary retention (bladder scan), faecal impaction (DRE), pain assessment, medication review
• Clinical assessment of dying
• Family discussion about what is happening

Bloods

• Generally not appropriate in last days of life unless result would change management
• May check calcium if hypercalcaemia treatable and appropriate

Imaging

• Generally not appropriate in terminal phase

Special Tests

• None required in most cases; clinical assessment guides management

Non-pharmacological

• Check and treat reversible causes (retention, impaction, pain, medication toxicity)
• Calm, quiet environment
• Familiar people present
• Gentle reassurance (even if patient appears unconscious; hearing may be preserved)
• Minimise unnecessary interventions
• Communicate with family: explain agitation is common in dying; reassure medications are for comfort

Pharmacological

• First-line: midazolam 2.5-5mg SC PRN (up to hourly)
  • If frequent doses needed: CSCI midazolam 10-30mg/24h
• If agitation with delirium features (hallucinations, paranoia):
  • Haloperidol 0.5-2mg SC PRN 2-hourly (max 10mg/24h)
  • Avoid in Parkinson's/Lewy body → use midazolam or levomepromazine
• If midazolam insufficient:
  • Levomepromazine 12.5-25mg SC PRN (or CSCI 25-100mg/24h)
  • Very sedating; broad-spectrum (D2, H1, mACh, 5HT2 blockade)
• Opioid toxicity (myoclonus, confusion):
  • Reduce opioid by 30-50%
  • Consider opioid rotation
  • Add midazolam for myoclonus
• Seizures: midazolam 5-10mg SC/buccal; CSCI midazolam 20-40mg/24h
• Palliative sedation (for intractable refractory agitation):
  • Continuous deep sedation: midazolam CSCI 30-60mg/24h ± levomepromazine
  • Ethical: principle of double effect; proportionate to suffering; intention is symptom relief
  • Requires senior decision, team consensus, family discussion, documentation

Surgical/Interventional

• Urinary catheterisation (for retention)
• Rectal interventions (for impaction)

Referral Criteria

• Refractory terminal agitation: specialist palliative care (urgent)
• Ethical concerns about palliative sedation: senior clinical and ethical discussion
• Family unable to cope: additional support, bereavement counselling

• Terminal agitation is a marker of the dying process; median survival once present is typically hours to 2-3 days
• Most cases can be managed effectively with midazolam ± levomepromazine
• Uncontrolled terminal agitation is distressing for families and staff; prompt management is essential
• Palliative sedation is appropriate and ethical for intractable suffering

Terminal Agitation Management Algorithm

Principle of Double Effect

Key Facts

Syringe drivers are an essential tool in palliative care, enabling symptom management when the oral route is unavailable. Safe prescribing requires knowledge of drug conversions, compatibility, and local protocols.

Epidemiology

• Used in approximately 30-50% of dying patients in the UK
• Most commonly used in the last days of life
• Also used earlier for bowel obstruction, persistent vomiting, or severe dysphagia

Aetiology

Indications for CSCI:

• Patient unable to swallow (dying, dysphagia, drowsy)
• Persistent nausea/vomiting (oral route unreliable)
• Bowel obstruction (oral absorption impaired)
• Need for multiple parenteral medications
• Patient preference (avoids repeated SC injections)

Pathophysiology

• Subcutaneous absorption: continuous, steady-state delivery → avoids peaks and troughs of intermittent injections
• SC bioavailability approaches IV for most palliative drugs
• Insertion sites: upper arm (deltoid area), anterior chest wall, thigh, abdomen
• Change site every 48-72 hours (or sooner if inflammation/hardening)

When to Start a Syringe Driver

• Patient recognised as dying and unable to take oral medications
• Persistent vomiting despite antiemetics
• Bowel obstruction preventing oral absorption
• Dysphagia (progressive neurological disease, head and neck cancer)
• Two or more symptoms requiring regular SC medication

Assessment Before Starting

• Current symptoms and medications
• Total 24-hour opioid requirement (including breakthrough doses used)
• Other medications needed (antiemetic, anxiolytic, antisecretory)
• Renal function (affects opioid choice)
• Allergy status

Red Flags

• Syringe driver NOT started as a "comfort measure" in isolation - must be accompanied by clinical assessment and communication
• Starting a syringe driver should NOT be seen as "giving up" - it is a route change, not a treatment change
• Drug incompatibility causing crystallisation or precipitation (check charts)
• Site reactions (inflammation, erythema - change site)

Bedside

• Review all current medications
• Calculate 24-hour opioid requirement
• Check drug compatibility (local chart)
• Identify insertion site
• Check renal function (from recent bloods)

Bloods

• U&Es (renal function - guides opioid choice)
• Generally not needed to initiate CSCI in dying patient

Imaging

• Not applicable

Special Tests

• Drug compatibility check (essential)
• Calculation check (second clinician verification recommended)

Prescribing a Syringe Driver

1. Calculate 24-hour opioid requirement:
   • Total oral morphine in 24h (MR + IR doses used) → convert to SC
   • Oral morphine ÷ 2 = SC morphine; oral morphine ÷ 3 = SC diamorphine
2. Add other medications as needed:
   • Pain: diamorphine, morphine, or oxycodone (or alfentanil if renal failure)
   • Nausea: haloperidol 1.5-5mg/24h or levomepromazine 6.25-25mg/24h
   • Agitation: midazolam 10-30mg/24h
   • Secretions: hyoscine butylbromide 60-120mg/24h or glycopyrronium 0.6-1.2mg/24h
3. Check compatibility: use local chart; Water for Injection as diluent
4. Prescribe PRN SC breakthrough doses (1/6th of 24h opioid dose)
5. Review daily: adjust doses based on symptom control and PRN use

Common CSCI Combinations

• Pain + nausea: diamorphine + haloperidol (compatible)
• Pain + agitation: diamorphine + midazolam (compatible)
• Pain + agitation + secretions: diamorphine + midazolam + hyoscine butylbromide (compatible)
• Pain + nausea + agitation: diamorphine + haloperidol + midazolam (check concentration)

Practical Points

• Use McKinley T34 syringe driver (rate in mm/hour; 24-hour infusion)
• Site: anterior chest wall, upper arm, abdomen, thigh
• Change site: every 48-72 hours or if inflammation
• Protect from light: if light-sensitive drugs used
• When starting: continue oral medications until CSCI has had 30-60 minutes to reach steady state

Referral Criteria

• Uncertain about drug compatibility or conversion: specialist palliative care pharmacist
• High-dose opioid conversions: specialist input
• Refractory symptoms despite CSCI: specialist palliative care review

• CSCI effectively manages symptoms in the majority of dying patients
• Starting a syringe driver does not hasten death - it changes the route of medication delivery
• Clear communication with families about the purpose of CSCI is essential
• Breakthrough doses should always be available alongside CSCI

Common CSCI Drug Doses

Opioid Conversion for CSCI

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.

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

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

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

• 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

Neuberger Review Findings (2013)

NICE NG31 - Priorities for Care of the Dying Person

Key Facts

Breaking bad news is one of the most challenging but important clinical skills. It affects the patient's trust, understanding, psychological adjustment, and decision-making.

Epidemiology

• Doctors break bad news thousands of times during their career
• Studies show significant variation in skill level
• Training improves performance and patient satisfaction
• Poor communication is the most common complaint in healthcare

Aetiology

Situations requiring breaking bad news:

• Cancer diagnosis
• Recurrence or progression of disease
• Transition to palliative care
• Poor prognosis
• Serious diagnosis (dementia, MND, progressive condition)
• Death of a patient (informing family)
• Unexpected complications

Pathophysiology

Not a pathological process. Breaking bad news is a communication skill grounded in psychological principles of adjustment, grief, and coping.

SPIKES Framework

1. S - Setting: private room, adequate time, tissues, switch off phone, sit down, invite relevant others
2. P - Perception: 'What have you been told so far about your condition?' (assess understanding)
3. I - Invitation: 'Would you like me to explain what the tests showed?' (check readiness; some patients do not want detailed information)
4. K - Knowledge: deliver information in simple language; use warning shot; avoid jargon; give information in small chunks; check understanding
5. E - Emotions: acknowledge and validate emotions; use empathic statements ('I can see this is very upsetting...'); allow silence; normalise reactions
6. S - Strategy/Summary: discuss next steps; outline plan; offer support; written information; arrange follow-up

Patient Responses

• Shock, disbelief, denial
• Anger, frustration
• Sadness, crying
• Anxiety, fear
• Acceptance
• Questions (may come later)

Red Flags

• Severe emotional distress (risk of self-harm)
• Denial interfering with essential treatment decisions
• Family conflict about disclosure
• Cultural considerations requiring interpreter or different approach
• Patient alone with no support network

Bedside

• Not applicable in the traditional sense
• Preparation: review all results, imaging, MDT outcome before the conversation
• Ensure you have correct and complete information before speaking to the patient

Bloods/Imaging

• All relevant results should be reviewed and understood before the conversation

Special Tests

• Not applicable

Non-pharmacological

• Before the conversation: review results, plan what to say, ensure privacy and time, invite patient to bring someone
• During the conversation: follow SPIKES framework; sit at patient's level; maintain eye contact; speak slowly and clearly; use pauses; check understanding; respond to emotions empathically
• After the conversation: summarise; offer written information; arrange follow-up appointment; ensure patient knows who to contact; document conversation in notes
• Self-care: recognise emotional impact on clinician; debrief with colleagues

Key Communication Skills

• Active listening: reflect back what patient says
• Empathy: 'I can see this has been really shocking for you'
• Warning shot: 'I'm afraid the news is not what we had hoped for'
• Avoid euphemisms: use clear language ('cancer', 'has died' - not 'passed away' or 'growth')
• Silence: allow pauses after delivering information; resist urge to fill silence
• Chunk and check: give small pieces of information, then check understanding
• Open questions: 'What questions do you have?' (not 'Do you have any questions?' which invites 'no')

Pharmacological

• Not directly applicable
• Anxiolytics or sedatives may rarely be needed for severe acute distress

Referral Criteria

• Severe psychological distress: psychology, psychiatry
• CNS (clinical nurse specialist) support: often present during bad news conversations
• Palliative care: for ongoing support after life-limiting diagnosis
• Bereavement support: after informing family of death

• Effective communication improves patient satisfaction, trust, and psychological adjustment
• Poor communication increases anxiety, depression, and complaints
• Training in breaking bad news improves clinician confidence and patient outcomes
• Patients remember how they were told bad news for the rest of their lives

SPIKES Framework Summary

Common Pitfalls

Key Facts

Advance care planning in palliative care ensures that patients receive care that aligns with their wishes and values, even when they can no longer communicate their preferences.

Epidemiology

• CPR survival to discharge in advanced cancer: <5% (often <1%)
• Only ~4% of UK adults have an ADRT
• ReSPECT forms now used in most of England and Wales
• Approximately 70% of people say they prefer to die at home

Aetiology

ACP is important in palliative care because:

• Many patients lose capacity to make decisions as illness progresses
• Without ACP, default care may include unwanted interventions (CPR, ICU admission)
• Discussing ACP improves concordance between patient wishes and actual care received

Pathophysiology

Not a pathological process. ACP is an ethical and legal framework within palliative care.

When to Discuss ACP in Palliative Care

• At diagnosis of life-limiting illness
• When Surprise Question answer is 'No'
• After significant deterioration or hospital admission
• When moving from curative to palliative intent
• At regular palliative care reviews
• At patient's request

Components

• Values, beliefs, what matters most
• Understanding of illness and prognosis
• Treatment preferences (hospital admission, ICU, ventilation)
• DNACPR/ReSPECT
• Preferred place of care and death
• Naming a spokesperson/proxy
• ADRT (specific treatments to refuse)

Red Flags

• DNACPR decision made without patient/family awareness (Tracey v Cambridge ruling)
• ACP documented but not accessible to emergency services
• Patient lacks understanding of their prognosis
• Family requests concealment of diagnosis from patient (cultural sensitivity needed but patient autonomy paramount)

Bedside

• Capacity assessment (does patient have capacity for ACP discussion?)
• Review existing documents (ADRT, LPA, ReSPECT)
• Explore patient's understanding of illness
• Discuss values, wishes, and preferences

Bloods/Imaging

• Not applicable

Special Tests

• Not applicable

Non-pharmacological

• Initiate discussion: open, honest conversation about future care
• DNACPR decision:
  • Clinical decision based on likelihood of CPR success and patient's best interests
  • Discuss with patient and/or family (Tracey v Cambridge 2014)
  • Document clearly; complete ReSPECT form
  • Review regularly (not permanent unless patient has clear ADRT)
• ReSPECT form: complete with patient; includes CPR decision, clinical recommendations, patient preferences
• ADRT: support patient to complete if they wish; ensure valid (written, signed, witnessed for life-sustaining treatment refusal)
• LPA: advise patient to consider health and welfare LPA while they have capacity
• Communicate plan: ensure accessible to all teams (GP, ambulance, hospital, care home)
• EPaCCS/Coordinate My Care: electronic systems for sharing palliative care preferences
• Review regularly: preferences may change over time

Pharmacological

• Not applicable

Surgical/Interventional

• Not applicable

Referral Criteria

• Complex ACP decisions: specialist palliative care
• Capacity concerns: formal capacity assessment
• Legal queries: trust legal department
• Family conflict: mediation, clinical ethics committee

• ACP increases the likelihood of dying in preferred place
• Reduces unwanted hospital admissions and interventions
• Improves family satisfaction and reduces complicated grief
• DNACPR discussions do not increase patient anxiety when handled sensitively
• ReSPECT process is now standard of care in most UK settings

CPR Survival Rates

Tracey v Cambridge (2014)

Key Facts

Grief is a natural process. Healthcare professionals should be able to recognise normal grief, identify complicated grief, and signpost appropriate support.

Epidemiology

• Approximately 600,000 deaths/year in the UK → millions affected by bereavement
• 10% develop prolonged grief disorder
• Bereaved people have increased mortality (widowhood effect) - 40% higher in first 6 months
• Increased risk of depression, anxiety, cardiovascular disease, and suicide

Aetiology

Grief occurs after any significant loss:

• Death of loved one (most common context)
• Loss of health, function, independence
• Loss of role (retirement, parenthood)
• Anticipatory grief (before death in terminal illness)

Pathophysiology

• Neurobiologically, grief activates pain pathways, attachment circuits (separation distress), and reward systems (yearning)
• Cortisol dysregulation and immune suppression in acute bereavement
• Complicated grief may involve persistent activation of attachment/separation distress circuitry without resolution

Normal Grief

• Waves of intense sadness, crying
• Yearning and searching for the deceased
• Disbelief and shock (especially if sudden death)
• Anger (at deceased, healthcare, God, themselves)
• Guilt ('If only...')
• Anxiety about the future
• Sleep disturbance, appetite changes
• Physical symptoms (fatigue, chest tightness, breathlessness)
• Preoccupation with memories of the deceased
• Gradual improvement over 6-12 months

Prolonged Grief Disorder (ICD-11)

• Intense longing/yearning persisting >6 months (>12 months ICD-11)
• Preoccupation with or rumination about the deceased
• Significant functional impairment
• Difficulty accepting the death
• Emotional numbness or inability to experience positive emotions
• Difficulty engaging in social activities or planning for the future

Red Flags

• Suicidal ideation or intent
• Prolonged inability to function (work, self-care, relationships)
• Significant weight loss or self-neglect
• Substance misuse
• Grief persisting >12 months with worsening trajectory
• Pre-existing mental illness exacerbated by bereavement

Bedside

• Sensitive assessment of grief experience
• Screening for complicated grief (PG-13 scale, ICG - Inventory of Complicated Grief)
• Assess for depression (PHQ-9), anxiety (GAD-7)
• Assess for suicidal ideation
• Social support assessment
• Assess for risk factors for complicated grief

Bloods

• Not routinely needed
• Consider TFTs, FBC if physical symptoms suggest underlying cause

Imaging

• Not applicable

Special Tests

• Bereavement risk assessment (ideally before death - identifies high-risk individuals)
• Standardised grief measures (ICG, PG-13) for research or specialist assessment

Non-pharmacological

• Majority need social support, not professional intervention
• Level 1: information, self-help, social support (family, friends, community)
• Level 2: trained bereavement volunteers, peer support groups (Cruse Bereavement Support, hospice bereavement services)
• Level 3: professional counselling (for complicated grief, depression, PTSD)
• Level 4: specialist mental health services (psychiatry, clinical psychology)
• Cognitive grief therapy (CGT): evidence-based for prolonged grief disorder (Shear et al. 2005)
• Trauma-focused CBT or EMDR: for PTSD-related grief
• Children: age-appropriate information, reassurance, routine, specialist support if needed (Winston's Wish, Child Bereavement UK)

Pharmacological

• Grief itself should NOT be treated with medication (it is a normal process)
• If complicated by depression: SSRIs (sertraline 50-200mg, fluoxetine 20-60mg)
• If complicated by insomnia: short-term zopiclone or melatonin (avoid long-term)
• If complicated by anxiety: consider SSRI; short-term benzodiazepine only in extreme cases

Surgical/Interventional

• Not applicable

Referral Criteria

• Prolonged grief disorder: specialist grief therapy
• Suicidal ideation: crisis team / psychiatric assessment
• Depression or PTSD: psychological therapy service (IAPT/NHS Talking Therapies)
• Children affected: Child Bereavement UK, Winston's Wish
• Pre-bereavement support: palliative care team

• Most people adjust to bereavement over 6-12 months without professional help
• 10% develop prolonged grief disorder (responds to cognitive grief therapy)
• Widowhood effect: 40% increased mortality in first 6 months of bereavement
• Bereavement increases risk of depression (30%), anxiety, cardiovascular disease
• Good pre-bereavement care (honest communication, being present at death, saying goodbye) reduces complicated grief

Models of Grief

Risk Factors for Complicated Grief

Key Facts

Spiritual care is a fundamental component of palliative care. Addressing spiritual needs improves quality of life, reduces suffering, and supports dignity at the end of life.

Epidemiology

• 70-80% of patients with serious illness report spiritual needs
• Spiritual wellbeing is associated with better quality of life and lower rates of depression
• Only 20-30% of patients have their spiritual needs formally assessed
• Spiritual distress is associated with desire for hastened death, increased symptom burden, and reduced quality of life

Aetiology

Spiritual needs arise from:

• Confrontation with mortality
• Loss of meaning and purpose
• Questioning of faith or beliefs
• Loss of identity and role
• Guilt, regret, unfinished business
• Fear of the unknown (after death)
• Desire for legacy and being remembered
• Need for reconciliation, forgiveness, love

Pathophysiology

Not a pathological process. Spiritual care operates within the bio-psycho-social-spiritual model of healthcare. Research demonstrates that spiritual wellbeing modulates the experience of physical symptoms and psychological distress.

Spiritual Distress

• 'Why is this happening to me?'
• 'What's the point of going on?'
• Loss of hope
• Guilt and regret
• Anger at God/life/fate
• Fear of dying or what comes after
• Feeling of being a burden
• Desire for hastened death
• Withdrawal and isolation
• Existential loneliness

Spiritual Wellbeing

• Sense of peace
• Meaning and purpose
• Connection with others
• Hope (even if not for cure - hope for comfort, legacy, reconciliation)
• Acceptance
• Gratitude

Red Flags

• Desire for hastened death (screen for depression AND spiritual distress)
• Severe existential anguish not responding to basic support
• Religious/spiritual crisis causing significant distress
• Conflict between patient's beliefs and medical treatment

Bedside

• FICA spiritual history:
  • F: What gives your life meaning? Do you have spiritual or religious beliefs?
  • I: How important are these in your life? How do they influence your healthcare decisions?
  • C: Are you part of a spiritual or religious community? Is this helpful?
  • A: How would you like me to address these issues in your care?
• Open questions: 'What gives you strength?', 'What are you most worried about?', 'Is there anything that is troubling you deeply?'
• Observe for signs of spiritual distress

Bloods/Imaging

• Not applicable

Special Tests

• FACIT-Sp (Functional Assessment of Chronic Illness Therapy - Spiritual Well-Being): validated measure of spiritual wellbeing
• Spiritual needs questionnaire (research settings)

Non-pharmacological

• All clinicians: be present; listen actively; acknowledge spiritual concerns; sit with uncertainty
• Basic spiritual care (all healthcare professionals):
  • Create safe space for patient to express concerns
  • Ask open questions about meaning, fears, hopes
  • Acknowledge distress without trying to 'fix' it
  • Respect patient's beliefs (or absence of belief)
• Chaplaincy referral: for in-depth spiritual assessment and support
  • Multi-faith chaplains available in most NHS trusts
  • Available to patients of all faiths and none
• Meaning-centred psychotherapy: evidence-based intervention for patients with advanced cancer (Breitbart et al.)
• Dignity therapy: patient creates legacy document; improves spiritual wellbeing and sense of meaning (Chochinov et al.)
• Life review: reflecting on life story, achievements, relationships
• Religious rituals: facilitated by chaplaincy or faith leader (prayer, sacraments, communion, last rites)
• Legacy work: letters, recordings, memory boxes (especially for parents of young children)

Pharmacological

• Not applicable to spiritual care itself
• Treat comorbid depression or anxiety if present

Surgical/Interventional

• Not applicable

Referral Criteria

• Spiritual distress not responding to basic care: chaplaincy
• Severe existential anguish: chaplain + psychology/psychiatry
• Specific religious needs: faith leader
• Desire for hastened death: specialist palliative care assessment (exclude depression, undertreated symptoms)

• Addressing spiritual needs improves quality of life and reduces psychological distress
• Patients with higher spiritual wellbeing have lower rates of depression and desire for hastened death
• Dignity therapy improves sense of meaning and purpose; valued by patients and families
• Spiritual care is associated with more peaceful deaths and better bereavement outcomes for families
• Unaddressed spiritual needs increase suffering and may lead to requests for euthanasia/hastened death

FICA Spiritual Assessment Tool

Dignity Therapy (Chochinov)

Key Facts

Carers are the backbone of community-based palliative care. Supporting carers is essential for sustaining home-based care and improving outcomes for both patient and carer.

Epidemiology

• ~6.5 million unpaid carers in the UK
• 1 in 5 carers provides >50 hours of care per week
• Carers are 2× more likely to be in poor health than non-carers
• Depression affects 40-50% of carers of patients with advanced cancer
• ~800,000 young carers in the UK (<18 years)

Aetiology

Carer burden arises from:

• Physical demands of caring (lifting, personal care, medication management)
• Emotional distress (witnessing suffering, anticipatory grief, fear of loss)
• Social isolation (reduced social activities, loss of own identity/role)
• Financial impact (reduced employment, care costs, benefits complexity)
• Sleep deprivation (nocturnal care needs)
• Lack of information and training

Pathophysiology

• Caregiver burden is an independent risk factor for mortality (63% higher in stressed caregivers - Schulz & Beach 1999)
• Anticipatory grief: grieving before death occurs; may be protective or may complicate post-bereavement adjustment

Signs of Carer Strain

• Physical exhaustion
• Emotional distress (anxiety, depression, irritability)
• Sleep disturbance
• Social withdrawal
• Neglecting own health (missed appointments, untreated conditions)
• Relationship difficulties
• Financial difficulties
• Substance misuse
• Expressing frustration, resentment, or guilt

Assessment

• 'How are you coping?'
• 'Are you getting enough rest?'
• 'Do you have support from anyone else?'
• 'Are you managing financially?'
• 'Do you know what support is available to you?'

Red Flags

• Carer expressing inability to continue caring
• Evidence of carer self-neglect or health deterioration
• Safeguarding concerns (abuse or neglect of patient by overwhelmed carer)
• Suicidal ideation in carer
• Young carer with educational/developmental impact
• Patient being kept at home against their wishes due to carer's preferences

Bedside

• Carer needs assessment (proactive; at every clinical encounter)
• Carer strain index (CSI) or Zarit Burden Interview
• Depression/anxiety screening (PHQ-9, GAD-7)
• Financial assessment
• Social support assessment

Bloods

• Not applicable to carer assessment itself
• Encourage carer to attend own GP for health review

Imaging/Special Tests

• Not applicable

Non-pharmacological

• Proactive carer assessment at every palliative care encounter
• Information and education: illness trajectory, what to expect, medication management, when to call for help
• Practical support: district nurses, personal care assistants, Marie Curie/Macmillan nurses, night sitting services
• Respite care: day centres, short-term residential, hospice day care
• Carer support groups: peer support (Carers UK, local carer centres)
• Psychological support: counselling, CBT, mindfulness
• Financial advice: Carer's Allowance, Attendance Allowance, PIP, Citizens Advice
• Young carers: young carer's assessment; school support; Young Carers Network
• After death: bereavement support (Cruse, hospice bereavement services)
• Advance care planning: involve carer in discussions; prepare for death

Pharmacological

• Not directly applicable
• Treat carer depression/anxiety through own GP (SSRIs, counselling)

Surgical/Interventional

• Not applicable

Referral Criteria

• All carers: offer carer's assessment (Care Act 2014)
• Significant carer strain: social services, carer support services
• Depression/anxiety: GP, psychological therapy
• Financial difficulties: benefits advice, social worker
• Young carers: local authority young carer's assessment
• Bereavement risk: palliative care team, bereavement services

• Supporting carers enables patients to remain at home longer (preferred by most)
• Carer support reduces unplanned hospital admissions
• Pre-bereavement support reduces complicated grief by 30-40%
• Unsupported carers have higher mortality, morbidity, and psychological distress
• Investment in carer support is cost-effective for the health system

Carer Support Available in the UK

Care Act 2014 - Carer's Rights

Key Facts

Palliative care emergencies require urgent medical management alongside consideration of the patient's overall condition, prognosis, and goals of care. Not all emergencies require active treatment - comfort may be the priority.

Epidemiology

• SCC: affects 3-5% of cancer patients; most common with breast, prostate, lung, myeloma
• SVC obstruction: 2-4% of cancer patients; most common with lung cancer and lymphoma
• Hypercalcaemia: 10-30% of advanced cancer patients (especially squamous cell, breast, myeloma)
• Catastrophic haemorrhage: rare but occurs in head and neck cancer, eroded major vessels

Aetiology

Causes are cancer-related:

• SCC: vertebral metastases compressing cord
• SVCO: mediastinal tumour/lymphadenopathy compressing SVC
• Hypercalcaemia: PTHrP (humoral), osteolytic metastases, vitamin D production
• Haemorrhage: tumour erosion into major vessel (carotid, aorta), coagulopathy
• Seizures: brain metastases, metabolic (hyponatraemia, uraemia), medications

Pathophysiology

• SVCO: obstruction of venous return from head, neck, and upper limbs → facial/upper limb oedema, cerebral oedema
• Hypercalcaemia: PTHrP (80%) → increased bone resorption + renal calcium reabsorption; dehydration worsens it
• Massive haemorrhage: exsanguination within minutes if major vessel eroded

Spinal Cord Compression

• Back pain (90%) - often precedes neurological signs by weeks
• Leg weakness (motor)
• Sensory level
• Bladder/bowel dysfunction (late; usually irreversible)
• Band-like pain around thorax/abdomen

SVC Obstruction

• Facial oedema (especially worse on waking)
• Distended neck veins and chest wall veins (Pemberton's sign)
• Dyspnoea
• Headache (worse bending forward)
• Arm oedema (unilateral or bilateral)

Hypercalcaemia

• Confusion, drowsiness
• Nausea, vomiting, constipation
• Polyuria, polydipsia, dehydration
• Abdominal pain
• Cardiac: shortened QT, arrhythmias

Massive Haemorrhage

• Sudden onset massive bleeding (oral, rectal, vaginal, from wound/tumour)
• Rapid cardiovascular collapse
• Usually from eroded major vessel

Red Flags

• Any new back pain in a cancer patient → consider SCC until proven otherwise
• Facial swelling in cancer patient → SVC obstruction
• Confusion in cancer patient → check calcium urgently
• Patient at risk of catastrophic haemorrhage: must have anticipatory plan

Bedside

• Neurological examination (SCC)
• Oxygen saturations, blood pressure
• ECG (hypercalcaemia: shortened QT)

Bloods

• Corrected calcium (urgent if hypercalcaemia suspected)
• FBC, U&Es, LFTs
• Clotting (haemorrhage)
• Blood cultures (neutropenic sepsis)

Imaging

• MRI whole spine (SCC - within 24 hours; emergency if progressive neurology)
• CT thorax (SVCO - assess cause and suitability for stenting)
• CT head (seizures - brain metastases)

Special Tests

• As guided by emergency type

Spinal Cord Compression

• Dexamethasone 16mg IV immediately (then 16mg daily, taper over 2 weeks)
• MRI whole spine within 24 hours (or same day if progressive deficit)
• Refer to oncology + spinal surgery: radiotherapy or surgical decompression
• Maintain flat bed rest until spinal stability confirmed
• Bladder catheterisation if retention
• VTE prophylaxis

SVC Obstruction

• Dexamethasone 8-16mg IV (reduces peri-tumoral oedema)
• Elevate head of bed
• SVC stent (interventional radiology): rapid relief; preferred for most causes
• Radiotherapy: if lymphoma or radiosensitive tumour
• Chemotherapy: if chemo-sensitive (lymphoma, SCLC)

Hypercalcaemia

• IV normal saline 1L over 4-6 hours (rehydrate aggressively; 3-4L/24h)
• Zoledronic acid 4mg IV over 15 minutes (takes 2-4 days to work)
• Or denosumab 120mg SC (if renal impairment or bisphosphonate failure)
• Monitor calcium, U&Es daily
• Treat underlying cancer if possible
• May recur: repeat bisphosphonate as needed

Massive Haemorrhage

• Anticipatory plan must be in place for at-risk patients
• Dark towels (reduces visual distress of blood)
• Stay with patient; hold their hand
• Midazolam 10mg IM/SC (sedation to reduce distress)
• Do NOT attempt to stop catastrophic haemorrhage (futile in major vessel erosion)
• Call for help; support family
• Morphine if pain

Seizures

• Midazolam 10mg buccal/IM (first-line)
• If recurrent: CSCI midazolam 20-40mg/24h
• Levetiracetam 250-1,000mg BD if ongoing seizure risk
• Dexamethasone 8-16mg (if brain metastases causing seizures)
• Phenytoin/sodium valproate: alternatives for ongoing prophylaxis

Referral Criteria

• SCC: emergency oncology and spinal surgery
• SVCO: interventional radiology and oncology
• Refractory hypercalcaemia: oncology
• Complex emergencies: specialist palliative care

• SCC: neurological outcome depends on speed of treatment; 50% who are walking at diagnosis remain ambulant; paraplegia at presentation is usually irreversible
• SVCO: stenting provides rapid relief (90% response); median survival depends on underlying cancer
• Hypercalcaemia: responds to rehydration + bisphosphonate in 80%; recurrence common; poor prognostic sign (median survival 3-4 months)
• Massive haemorrhage: usually fatal within minutes; focus is on comfort and dignity
• Seizures: most controlled with anticonvulsants; brain metastases have poor prognosis

Palliative Care Emergency Summary

Catastrophic Haemorrhage Protocol