Palliative Care in Primary Care
Primary care plays a central role in palliative care delivery, with GPs coordinating symptom management, advance care planning, and end-of-life care for patients with life-limiting conditions in the community setting.
Key Facts
Approximately 75% of patients with advanced illness spend >90% of their last year of life in the community; GPs are their primary clinicians Gold Standards Framework (GSF): structured approach to identifying and managing palliative care patients in primary care Surprise question: 'Would you be surprised if this patient died in the next 12 months?' — if no, consider palliative approach Palliative care register: GP practices should maintain a register of patients with palliative care needs and review regularly Anticipatory prescribing: prescribe 'just in case' medications for common end-of-life symptoms (pain, nausea, agitation, secretions) Common just-in-case drugs: morphine sulphate 10mg/mL, midazolam 10mg/2mL, cyclizine 50mg/mL, hyoscine butylbromide 20mg/mL, levomepromazine 25mg/mL Preferred place of death: approximately 70% of people wish to die at home, but only 25% achieve this Key skills: symptom management, communication, advance care planning, coordination of multi-agency care, prescribing syringe drivers
Overview
Key Facts
Palliative care is an approach that improves the quality of life of patients and their families facing life-threatening illness, through prevention and relief of suffering. Primary care is the setting where most palliative patients spend the majority of their time.
Epidemiology
- Approximately 500,000 people die each year in England
- An estimated 75% of dying patients have a predictable dying trajectory suitable for palliative care planning
- Most deaths are from cancer (28%), cardiovascular disease (24%), respiratory disease (14%), and dementia (13%)
- Average GP manages approximately 20 dying patients per year
Palliative Care Framework in Primary Care
- Identification: surprise question, deteriorating function, increasing symptom burden
- Assessment: holistic assessment of physical, psychological, social, and spiritual needs
- Planning: advance care planning, preferred priorities of care, emergency healthcare plans
- Coordination: GP as clinical lead; district nurses, specialist palliative care, hospice, social care
- Delivery: symptom management, anticipatory prescribing, out-of-hours handover
- Support: bereavement support for families
Common Life-Limiting Conditions Requiring Palliative Approach
- Advanced cancer
- Severe heart failure (NYHA IV)
- Advanced COPD (on LTOT, frequent exacerbations)
- Advanced dementia
- Motor neurone disease
- End-stage renal disease (conservative management)
- Advanced liver disease
Clinical Presentation
Identification of Palliative Care Needs
- Surprise question positive
- Declining functional status (increasing Karnofsky/AKPS decline)
- Increasing frequency of hospital admissions
- Weight loss, cachexia
- Increasing symptom burden despite treatment optimisation
- Patient/family expressing wishes about end of life
Common Symptoms Requiring Management
- Pain: present in 60-80% of advanced cancer patients
- Breathlessness: common in COPD, heart failure, cancer
- Nausea and vomiting: 40-60% of advanced cancer patients
- Constipation: 50% of palliative patients (often opioid-related)
- Fatigue: most common symptom in advanced illness
- Anxiety and depression
- Terminal agitation/delirium: in last days of life
- Respiratory secretions ('death rattle'): in last hours
Red Flags
- Uncontrolled pain — specialist palliative care input needed
- Spinal cord compression — oncological emergency
- Hypercalcaemia — treat with IV fluids and bisphosphonates
- Severe breathlessness with distress — consider opioids, benzodiazepines
- Suicidal ideation — psychiatric assessment
Differential Diagnosis
| Symptom | Common Cause in Palliative Care | Action |
|---|---|---|
| Worsening pain | Disease progression, neuropathic pain, bone metastases | Review analgesic ladder, consider nerve block |
| New confusion | Delirium (infection, medications, metabolic), brain metastases | Assess reversible causes; if terminal, manage symptomatically |
| Breathlessness | Pleural effusion, lymphangitis, anxiety, PE | Assess for reversible cause; low-dose opioid if irreversible |
| Nausea | Constipation, raised ICP, medications, gastroparesis | Anti-emetic choice based on cause |
| Oedema | Hypoalbuminaemia, DVT, tumour compression | Diuretics, compression, elevation |
Diagnosis / Investigation
Assessment
- Holistic assessment: PEPSI COLA aide-memoire (Physical, Emotional, Personal, Social support, Information, Control, Out of hours, Late/after death)
- Symptom assessment tools: IPOS (Integrated Palliative Outcome Scale), numerical rating scale for pain
- Functional status: AKPS (Australia-modified Karnofsky Performance Status) or ECOG
Investigations
- Minimise investigations in last weeks of life — focus on comfort
- Bloods only if result will change management (e.g. correctable hypercalcaemia)
- Imaging: only if likely to reveal treatable cause (e.g. pleural effusion for drainage)
Advance Care Planning Documentation
- Advance statement (wishes and preferences)
- Advance decision to refuse treatment (ADRT)
- DNACPR/ReSPECT form
- Emergency healthcare plan (EHCP)
- Preferred place of care and death
Management
Symptom Management
Pain (WHO analgesic ladder):
- Step 1: paracetamol 1g QDS ± NSAID
- Step 2: weak opioid (codeine 30-60mg QDS, tramadol 50-100mg QDS)
- Step 3: strong opioid — oral morphine 5-10mg 4-hourly PRN initially; titrate; convert to modified-release once stable
- Neuropathic pain: amitriptyline 10-75mg nocte or gabapentin 100-600mg TDS or pregabalin 75-300mg BD
- Bone pain: radiotherapy, bisphosphonates, NSAIDs
Breathlessness:
- Low-dose oral morphine 2.5-5mg 4-hourly PRN (evidence-based for palliation of breathlessness)
- Fan directed at face, positioning, breathing exercises
- Lorazepam 0.5-1mg SL for anxiety-related breathlessness
Nausea and vomiting:
- Cause-directed anti-emetic:
- Cyclizine 50mg TDS (vestibular, raised ICP)
- Metoclopramide 10mg TDS (gastroparesis, not in bowel obstruction)
- Haloperidol 0.5-1.5mg OD-BD (chemical/metabolic cause)
- Levomepromazine 6.25mg OD (broad-spectrum)
- Ondansetron 4-8mg TDS (chemotherapy-induced)
Constipation:
- Always co-prescribe laxative with opioids
- Combination stimulant + softener: senna 15mg + docusate 100-200mg BD
- Macrogol (Laxido) 1-3 sachets daily
Anticipatory Prescribing (Just-in-Case Medications)
- Morphine sulphate 10mg/mL SC: for pain/breathlessness (2.5-5mg PRN)
- Midazolam 10mg/2mL SC: for agitation/anxiety/seizures (2.5-5mg PRN)
- Cyclizine 50mg/mL SC: for nausea/vomiting (50mg PRN, TDS max)
- Hyoscine butylbromide 20mg/mL SC: for respiratory secretions (20mg PRN, QDS max)
- Levomepromazine 25mg/mL SC: for nausea/agitation (6.25-12.5mg PRN)
Syringe Driver
- Continuous subcutaneous infusion over 24 hours for patients unable to take oral medication
- Common combinations: morphine + midazolam + cyclizine or levomepromazine
- Monitor and adjust daily
Coordination
- Maintain palliative care register with regular MDT review
- Out-of-hours handover (ADASTRA/special notes)
- Coordinate with district nurses, specialist palliative care team, hospice
- Ensure advance care plan is accessible to all professionals (EHCP, ReSPECT)
Referral Criteria
- Complex symptom management: specialist palliative care team
- Psychological distress in patient/family: clinical psychology/counselling
- Social care needs: social worker referral
- Equipment/nursing support: district nursing, community equipment services
- Hospice referral: for respite, symptom management, or end-of-life care
Prognosis
- Advanced cancer: median survival varies by cancer type; palliative care improves quality of life and may extend survival (Temel et al., 2010 — NSCLC early palliative care: 11.6 vs 8.9 months)
- Heart failure NYHA IV: 1-year mortality >50%
- Advanced COPD on LTOT: 5-year mortality approximately 50%
- Advanced dementia: median survival from diagnosis 4-8 years; from severe stage 1-3 years
- Place of death: with good palliative care planning, home death rates can increase from 25% to >50%
- Bereavement: approximately 10% of bereaved relatives develop prolonged grief disorder
Other Relevant Information
Anticipatory Medications Summary
| Symptom | Drug | Route | Dose |
|---|---|---|---|
| Pain/breathlessness | Morphine sulphate | SC | 2.5-5mg PRN 1-hourly |
| Agitation/anxiety | Midazolam | SC | 2.5-5mg PRN 1-hourly |
| Nausea/vomiting | Cyclizine | SC | 50mg TDS |
| Respiratory secretions | Hyoscine butylbromide | SC | 20mg QDS |
| Nausea/agitation (broad) | Levomepromazine | SC | 6.25-12.5mg PRN |
Gold Standards Framework Prognostic Indicator Guidance
| Disease | Indicators of Last 12 Months |
|---|---|
| Cancer | Metastatic disease, declining performance status, weight loss |
| Heart failure | NYHA III-IV despite optimal treatment, repeated admissions |
| COPD | FEV1 <30%, on LTOT, recurrent exacerbations |
| Dementia | Unable to walk unaided, incontinence, reduced oral intake |
| Renal | Stage 5, declining eGFR, choosing conservative management |