End of Life Care for GPs: Your Survival Guide
Because dignity in dying starts with confidence in caring
Last Updated: March 2026
Executive Summary: What You'll Master Today
Because you have 47 other things to do before lunch, and that's just the morning list
Clinical Skills You'll Gain
- • Recognition: Identify patients approaching end of life using prognostic indicators
- • Communication: Master SPIKES framework for breaking bad news
- • Assessment: Conduct holistic physical, psychological, social, and spiritual assessments
- • Symptom Control: Evidence-based management of pain, breathlessness, nausea
- • Prescribing: Safe anticipatory prescribing and syringe driver principles
- • Emergencies: Recognize and manage palliative emergencies
Legal & Practical Knowledge
- • Capacity: Mental Capacity Act 2005 assessment framework
- • DNACPR: Legal requirements and conversation skills
- • Advance Planning: ADRT, LPA, and advance statements
- • After Death: Verification, certification, and coroner referrals
- • Family Support: Carer assessment and bereavement care
- • Benefits: DS1500, Carer's Allowance, and financial support
📊 Quick Facts That Matter
Downloads
Essential clinical resources and downloadable materials
Downloads
path: PALLIATIVE & END OF LIFE CARE
- 10 ways to help the bereaved and mourning.pdf
- 2ww referral - patient leaflet 2020.pdf
- a model of good practice for palliative care.doc
- advance care plan - top tips.pdf
- advance care planing - universal principles document.pdf
- advance care planning.pptx
- advanced care plans - emergency care plans - lasting power of attorney - RESPECT.pptx
- assessing spiritual needs.pdf
- bereavement guidance.pdf
- bereavement reaction assessment tool.docx
- bereavement risk assessment tool - BRAT.pdf
- cancer communication toolkit by NW London Cancer Network.pdf
- cancer referral guidelines - macmillan 2023.pdf
- cases - death dying and the coroner.doc
- cases - pain management.ppt
- cases - terminal care.doc
- chf and palliation.pdf
- complementary therapies in cancer care.pdf
- creative health reading list.pdf
- death and dying conversations - and looking after ourselves.ppsx
- decision making at end of life.ppt
- DNACPR policy rotherham.pdf
- ds1500 form.doc
- dying with dignity.ppt
- e is for energy.pdf
- emergencies in cancer care - tutorial.doc
- emergency care plans - discussing - infographic.pdf
- home visits to dying patients - fab prompts and tlc.docx
- improving cancer care.ppt
- improving diagnosis of cancer - a toolkit for gp.pdf
- on talking with cancer patients by Dr McAdam.pdf
- opioid conversion chart 2021.pptx
- oral cancer aide memoire.pdf
- pain control - fentanyl patches - guidelines for use.pdf
- pain control - opioid conversion diagram - leeds 2016.pdf
- pain control - opioid conversion diagram - the best.doc
- pain control - opioid conversion table.pdf
- pain control.pdf
- palliative care - from worcester vts.ppt
- palliative care - not just opiates.ppt
- palliative care - top ten tips.pdf
- palliative care end of life top tips 2020.pdf
- palliative care handbook by rowans hospice 2019.pdf
- palliative care handbook by wessex 2019 - exceptional.pdf
- palliative medicine core curriculum.doc
- palliative medicine with an elderly focus.pdf
- pbl on death and dying.doc
- pepsi-cola holistic reviews.doc
- practicalities of palliative care.ppt
- primary palliative care - a model of good practice.doc
- prognostic indicators.pdf
- quality improvement toolkit for early diagnosis of cancer.pdf
- ReSPECT - communication tips.docx
- ReSPECT - core competencies.docx
- ReSPECT - emergency care treatment form - what it is and what it is not.docx
- ReSPECT competences document.doc
- ReSPECT Conversations in COVID.pdf
- symptom control - confusional states in advanced cancer.pdf
- symptom control - dyspnoea.pdf
- symptom control - nausea and vomiting in palliative care.ppt
- symptom control - nausea and vomiting.pdf
- symptom control - nausea and vomiting.ppt
- symptom control - quick guide rotherham.pdf
- ten top tips for palliative care patients.pdf
- terminal care - agitation.pdf
- terminal care - anticipatories.ppt
- terminal care - anticipatory drug prescribing.pdf
- terminal care - anticipatory medication.doc
- terminal care - breathlessness.pdf
- terminal care - end stage disease indicators.pdf
- terminal care - estimating length of life in palliative patients.pdf
- terminal care - nausea & vomiting.pdf
- terminal care - pain control.pdf
- terminal care - secretions.pdf
- terminal care - symptom control in the last 48 hours (1).pdf
- terminal care - symptom control in the last 48 hours (2).pdf
- terminal care - symptom control last days.pdf
- when someone dies - practical aspects.doc
Web Resources
End of life / palliative care
Teaching & learning resources
End-of-life planning tools
Books / reflections
Other useful bits
- Yorkshire Symptom Management App:Apple App StoreGoogle Play
- Palliative Care Guidelines website (syringe driver compatibility)
- Dr Kathryn Mannix video – explaining dying process
Important patient resources
Quick Navigation
Jump to the section you need most urgently
🧠 Brainy Bites: Essential End of Life Care Wisdom
Memory aids and golden rules for confident end-of-life care
Golden Rules
- • Early recognition allows better planning and patient choice
- • Honest communication builds trust and reduces anxiety
- • Symptom control is achievable in 95% of patients
- • Family support is as important as patient care
- • Anticipatory prescribing prevents crisis situations
- • Dignity and comfort are always possible
Remember: You don't need to be a palliative care specialist to provide excellent end-of-life care. You just need to know when to worry, when to treat, and when to refer.
Memory Aids & Mnemonics
SPIKES (Breaking Bad News)
Setting, Perception, Invitation, Knowledge, Emotions, Strategy
PAIN Assessment
Palliates/Provokes, Associated symptoms, Intensity, Nature/timing
Hypercalcemia
Stones, Bones, Groans, Moans
(Kidney stones, bone pain, GI symptoms, psychiatric symptoms)
Capacity Assessment
Can they Understand, Retain, Use/weigh, Communicate?
5 Palliative Care Emergencies
Hypercalcemia, severe Haemorrhage, neutropenic Sepsis, Spinal cord compression, Superior vena cava compression
🎯 Recognition & Identification of End of Life
When to start thinking about palliative care
Early identification allows for better planning, symptom control, and patient choice. The "surprise question" - "Would you be surprised if this patient died in the next 12 months?" - is a useful starting point.
CANCER 🎗️ Trajectory
- • Metastatic disease
- • Progressive weight loss >10% in 6 months
- • Declining performance status (ECOG 3-4)
- • Recurrent hospital admissions
- • Patient expressing concerns about prognosis
🫁 ORGAN FAILURE Trajectory
- • Heart failure NYHA Class III-IV
- • COPD with recurrent exacerbations
- • CKD Stage 4-5 declining dialysis
- • Liver failure with ascites/encephalopathy
- • Multiple hospital admissions
🧠 DEMENTIA/FRAILTY Trajectory
- • Unable to walk without assistance
- • Urinary and fecal incontinence
- • No meaningful conversation
- • Unable to dress without assistance
- • Recurrent infections or eating problems
❓ The Surprise Question
"Would you be surprised if this patient died in the next 12 months?"
If the answer is NO, consider:
- • Advance care planning discussions
- • Palliative care referral
- • DNACPR discussion if appropriate
- • Preferred place of care conversation
- • Anticipatory prescribing
🥇 Gold Standards Framework
Three stages of identification:
💬 Communication & Breaking Bad News
Having those difficult conversations
🗣️ SPIKES Framework for Breaking Bad News
| Step | Action | Example |
|---|---|---|
| Setting | Private, comfortable environment. Sit down, maintain eye contact. Allow adequate time. Have tissues available. Consider who else should be present. | Private room, tissues, turn off phone |
| Perception | Find out what they already know | "What is your understanding of your condition?" "What have the doctors told you so far?" "What are your main concerns?" |
| Invitation | Ask permission to share information | "Would you like me to explain what the tests show?" "How much detail would you like me to go into?" "Are you the sort of person who likes to know everything?" |
| Knowledge | Share information sensitively | Use simple, clear language. Give information in small chunks. Use warning shots: "I'm afraid I have some difficult news..." Pause frequently to check understanding |
| Emotions | Respond to emotions with empathy | "I can see this is very difficult news" "This must be frightening for you" Allow silence and tears. Offer practical support |
| Strategy | Plan next steps together | "What questions do you have?" "What are your main concerns now?" "Who can we involve to help you?" Arrange follow-up |
💬 Useful Conversation Starters & Phrases
Opening difficult conversations:
- • "I'd like to talk about how you're feeling about your illness..."
- • "Some patients in your situation like to plan ahead..."
- • "Have you thought about what's most important to you?"
Introducing Palliative Care:
"I'd like to talk about making sure you're as comfortable as possible and that we're focusing on what's most important to you. This is called palliative care, and it works alongside your other treatments."
Discussing Prognosis:
- • "I wish I could give you more certainty..."
- • "We're hoping for the best but planning for different possibilities"
- • "Some people live longer/shorter than we expect"
- • "I wish I had better news. The scans show that the cancer has spread and is not responding to treatment. This means we're looking at months rather than years."
Exploring Goals & Values:
- • "What does a good day look like for you?"
- • "What are you most worried about?"
- • "If your time becomes limited, what would be most important?"
- • "Given what we've discussed, what's most important to you now?"
⚠️ Managing Difficult Situations
Anger:
- • Acknowledge the emotion
- • Don't take it personally
- • Explore the underlying fear
- • Set boundaries if needed
Denial:
- • Don't force acceptance
- • Provide information gradually
- • Check understanding regularly
- • Respect coping mechanisms
📋 Holistic Assessment Framework
Looking at the whole person and family
🩺 Physical Assessment Priorities
Symptom Assessment:
- • Pain: Location, severity (0-10), character, triggers
- • Breathlessness: At rest/exertion, triggers, anxiety component
- • Nausea/Vomiting: Timing, triggers, bowel function
- • Fatigue: Impact on daily activities
- • Appetite: Weight loss, swallowing difficulties
- • Sleep: Quality, night sweats, anxiety
Focused Examination:
- • Performance Status: ECOG/Karnofsky scale
- • Hydration: Skin turgor, mucous membranes
- • Neurological: Confusion, weakness, reflexes
- • Respiratory: Rate, effort, secretions
- • Cardiovascular: Pulse, BP, peripheral perfusion
- • Abdomen: Distension, masses, bowel sounds
| Symptom | Assessment Tool | Key Questions |
|---|---|---|
| Pain | 0-10 scale, PAIN assessment | Location, character, triggers, relief |
| Breathlessness | MRC dyspnea scale | Exertion level, rest symptoms, anxiety |
| Nausea/Vomiting | Frequency, triggers | Timing, food relationship, medications |
| Fatigue | 0-10 scale | Impact on daily activities, sleep |
| Appetite | Weight loss percentage | Food preferences, swallowing |
🧠 Psychological Assessment
Screening Questions:
- • "How are you coping with everything?"
- • "What worries you most?"
- • "Are you sleeping okay?"
- • "Do you feel sad or anxious?"
Red Flags:
- • Persistent low mood >2 weeks
- • Panic attacks or severe anxiety
- • Suicidal thoughts
- • Complete social withdrawal
🕊️ Spiritual Assessment
Gentle Exploration:
- • "What gives your life meaning?"
- • "Do you have any spiritual or religious beliefs?"
- • "Is there anything you feel you need to do or say?"
- • "What are you hoping for?"
- • "What are you worried about?"
Remember: Spiritual care is not about religion - it's about meaning, purpose, and what matters most to the person.
⚠️ Red Flags - Urgent Assessment Needed
- • Spinal cord compression signs
- • Superior vena cava obstruction
- • Hypercalcemia symptoms
- • Massive haemorrhage risk
- • Severe delirium/agitation
- • Uncontrolled pain
- • Respiratory distress
- • Sepsis in context of goals
💊 Symptom Management
Evidence-based approaches to common symptoms
🎯 WHO Analgesic Ladder
Step 1: Mild Pain (1-3/10)
Paracetamol 1g QDS + NSAID (if appropriate)
Step 2: Moderate Pain (4-6/10)
Add weak opioid: Codeine 30-60mg QDS or Tramadol 50-100mg QDS
Step 3: Severe Pain (7-10/10)
Strong opioid: Morphine, Oxycodone, Fentanyl
⚠️ Opioid Prescribing Safety
Key Principles:
- • Start low, go slow
- • Regular + breakthrough dosing
- • Anticipate and prevent side effects
- • Review and adjust regularly
Side Effect Management:
- • Constipation: Laxatives from day 1
- • Nausea: Antiemetic for first week
- • Drowsiness: Usually settles in 3-5 days
- • Respiratory depression: Rare in cancer pain
| Opioid | Starting Dose | Breakthrough | Notes |
|---|---|---|---|
| Morphine IR | 5-10mg 4-hourly | 1/6 daily dose | Gold standard, cheap |
| Morphine MR | 10mg MR twice daily (every 12 hours) | Morphine IR | Convert when stable |
| Oxycodone IR | 2.5-5mg 4-hourly | 1/6 daily dose | Less nausea, constipation |
| Fentanyl patch | 12mcg/hr | Morphine IR | Stable pain only |
🫁 Breathlessness Management
Reversible Causes:
- • Pleural effusion
- • Pulmonary embolism
- • Pneumonia/infection
- • Heart failure
- • Anemia
- • Anxiety
Irreversible Causes:
- • Lung metastases
- • Lymphangitis carcinomatosa
- • End-stage COPD
- • Progressive heart failure
- • Muscle weakness
Non-pharmacological:
- • Fan or open window
- • Positioning (upright, forward lean)
- • Breathing techniques
- • Activity pacing
- • Anxiety management
Pharmacological:
- • Opioids: Morphine 2.5-5mg 4-hourly (strong evidence)
- • Oxygen: If hypoxic (SpO2 <90%) 2-4L/min via nasal cannula
- • Anxiolytics: Lorazepam 0.5mg if anxious
- • Bronchodilators if appropriate
- • Steroids for lymphangitis
🤢 Nausea Pathways & Targeted Treatment
Chemoreceptor Trigger Zone (CTZ)
Causes: Drugs, toxins, metabolic
Treatment: Haloperidol 1.5mg ON, Metoclopramide 10mg TDS
Vestibular
Causes: Motion, inner ear, brain mets
Treatment: Cyclizine 50mg TDS, Hyoscine 0.4mg TDS
Gastric Stasis
Causes: Drugs, autonomic dysfunction
Treatment: Metoclopramide 10mg TDS, Domperidone 10mg TDS
Bowel Obstruction
Causes: Mechanical obstruction
Treatment: Cyclizine + Hyoscine butylbromide
| Drug | Dose | Best for | Avoid in |
|---|---|---|---|
| Metoclopramide | 10mg TDS | Gastric stasis, drugs | Bowel obstruction, Parkinson's |
| Cyclizine | 50mg TDS | Motion, raised ICP | Heart failure |
| Haloperidol | 1.5mg ON | Opioids, metabolic | Parkinson's |
| Ondansetron | 4-8mg TDS | Chemotherapy | Constipation |
📝 Anticipatory Prescribing
Just in case medications for symptom control
💡 Key Principle:
Start Anticipatory Medication if you think the patient has less than 6 months to live. Only costs £30 or so. Allows rapid symptom control without delay. The MINIMUM is an opioid and midazolam.
| Symptom | Medication | Dose | Route | Frequency | Supply |
|---|---|---|---|---|---|
| Pain/Breathlessness | Morphine Sulfate | 2-5mg SC (opioid naive) Calculate if already on opioids | SC/IM | PRN 30min-hourly | 10 × 1ml ampoules (10mg/ml) |
| Agitation/Distress | Midazolam | 2-5mg SC (adjust for frailty/background benzos) | SC/Buccal | PRN 30min-hourly | 10 × 2ml ampoules (10mg in 2ml) |
| Respiratory Secretions | Hyoscine Butylbromide (Buscopan®) | 20mg SC | SC | PRN hourly Max 120mg/24hrs | 10 ampoules (20mg/ml) |
| Nausea & Vomiting | Levomepromazine | 2.5-5mg SC | SC | 12-hourly PRN (may need hourly initially) | 10 ampoules (25mg/ml) |
⚠️ Important Safety Points
- • If 3+ doses in 4 hours with little benefit: Seek urgent advice or review
- • If >6 doses in 24 hours: Seek advice or review
- • Always double/triple check calculations - wrong dose can kill
- • Levomepromazine additional use: Terminal agitation/agitated delirium under specialist advice
💉 Syringe Driver Principles
When to Consider Syringe Driver
Indications:
- • Persistent nausea/vomiting
- • Dysphagia/unable to swallow
- • Bowel obstruction
- • Unconscious/semi-conscious
- • Poor absorption
- • Patient preference
Contraindications:
- • Patient/family refusal
- • Infection at site
- • Bleeding disorder
- • Lack of appropriate support
- • Drug incompatibilities
🔄 Common Drug Combinations
- • Pain + Nausea: Morphine + Cyclizine (compatible in WFI)
- • Pain + Agitation: Morphine + Midazolam (compatible in WFI)
- • Bowel Obstruction: Cyclizine + Hyoscine butylbromide + Morphine
⚠️ Safety Considerations
Drug Compatibility:
- • Check compatibility charts
- • Use water for injection (WFI)
- • Avoid mixing >3 drugs
- • Monitor for precipitation
Monitoring:
- • Site inspection daily
- • Symptom control assessment
- • Side effects monitoring
- • Family education and support
💻 Practical Prescribing Tips
Electronic Systems Support:
- • EMIS/SystmOne: Have sections to make prescribing easier
- • Drop-down boxes: Medication names and doses on Anticipatory Medication charts
- • Syringe Driver charts: Built-in templates available
- • Ardens: Brilliant palliative care section to make life easier
🚨 Palliative Emergencies
Recognizing and managing urgent situations
🚨 The 5 Palliative Care Emergencies
Hypercalcaemia
severe Haemorrhage
neutropenic Sepsis
Spinal cord compression
Superior vena cava compression
🚨 Spinal Cord Compression - Oncological Emergency
Spinal cord compression is an oncological emergency. Early recognition and treatment can preserve neurological function.
⚠️ Red Flag Symptoms:
- • Pain: Severe back pain, worse at night, band-like
- • Motor: Weakness, heavy legs, difficulty walking
- • Sensory: Numbness, tingling, sensory level
- • Autonomic: Bladder/bowel dysfunction
- • Gait: Unsteady, wide-based gait
🎯 Immediate Actions:
- Dexamethasone 16mg PO/IV immediately
- Urgent MRI spine (same day)
- Oncology referral for radiotherapy
- Bed rest until assessment
- PPI with steroids
📞 Communication Script:
"I'm calling about [patient name] who I suspect has spinal cord compression. They have [symptoms]. I've given dexamethasone 16mg and they need urgent MRI and oncology review today. This is a potential oncological emergency."
🦴 Hypercalcemia - "Stones, Bones, Groans, Moans"
Symptoms (Stones, Bones, Groans, Moans):
- • Confusion, depression, psychosis
- • Nausea, vomiting, constipation
- • Polyuria, polydipsia, dehydration
- • Bone pain, muscle weakness
- • Fatigue, drowsiness
Severity Guide:
- • Mild: 2.65-2.9 mmol/L
- • Moderate: 3.0-3.4 mmol/L
- • Severe: >3.4 mmol/L
- • Symptoms correlate poorly with level
| Severity | Treatment | Setting | Goals of Care |
|---|---|---|---|
| Mild + Asymptomatic | Oral fluids, monitor | Community | Comfort focused |
| Moderate + Symptomatic | IV fluids + bisphosphonate | Hospital/hospice | Symptom relief |
| Severe | Urgent hospital admission | Hospital | Discuss with patient/family |
Clinical Features:
- • Stones: Kidney stones, polyuria
- • Bones: Bone pain, fractures
- • Groans: Nausea, vomiting, constipation
- • Moans: Confusion, depression, psychosis
Management:
- • IV fluids: 0.9% saline 3-4L/24hrs
- • Bisphosphonate: Zoledronic acid 4mg IV
- • Monitor: U&Es, calcium daily
- • Avoid: Thiazides, calcium, vitamin D
🩸 Massive Haemorrhage
Massive Uncontrollable Haemorrhage can happen in 10-20% of lung cancer patients. It is a horrible thing to have to watch for the patient, their relatives and you. Mortality is super high. So, always write up midazolam for Lung Cancer patients in case this happens.
In the case of massive terminal haemorrhage, give 10mg stat doses IV or IM deltoid/gluteal until the patient is settled.
⚠️ High Risk Situations:
- • Head/neck cancers near major vessels
- • Lung cancer with hemoptysis history
- • GI cancers with previous bleeding
- • Liver disease with varices
- • Anticoagulated patients
- • Thrombocytopenia
📋 Anticipatory Measures:
- • Dark towels readily available
- • Midazolam 10mg buccal PRN
- • Family education about what to expect
- • Clear plan: call GP/district nurse
- • Consider stopping anticoagulants
- • Discuss goals of care
🚨 Acute Management:
If Conscious:
Stay calm, reassure patient, position comfortably
Family Support:
Explain what's happening, stay with them, arrange immediate bereavement support
Decision Making: Hospital transfer rarely appropriate unless clearly reversible cause and good prognosis
💉 Catastrophic haemorrhage PRN medication:
- • Midazolam 10 mg IM stat if catastrophic bleed / severe distress
- • May repeat 5–10 mg every 5–10 minutes if required
🫁 Superior Vena Cava Obstruction (SVCO)
Clinical Features:
- • Face/neck: Swelling, plethora, cyanosis
- • Arms: Swelling, prominent veins
- • Chest: Dilated collateral veins
- • Symptoms: Breathlessness, headache, cough
- • Worse: When lying flat, bending forward
Management:
- • Dexamethasone: 16mg daily
- • Position: Sit upright, avoid lying flat
- • Urgent CT chest: Confirm diagnosis
- • Oncology referral: Radiotherapy/stenting
- • Avoid: Central line insertion in arms
⚠️ When to Worry
SVCO can be life-threatening if there is:
- • Stridor or severe breathlessness
- • Cerebral edema (confusion, headache)
- • Rapid onset (hours to days)
🦠 Neutropenic Sepsis
Risk Factors:
- • Recent chemotherapy
- • Neutrophil count <0.5
- • Temperature >38°C
- • May have minimal signs
Emergency Management:
- • Immediate antibiotics (within 1 hour)
- • Blood cultures before antibiotics
- • IV fluids if hypotensive
- • Urgent hospital admission
⚖️ Legal & Ethical Issues
🧠 Mental Capacity Act 2005 - Key Principles
Five Key Principles:
- Presumption of Capacity: Every adult has the right to make their own decisions and must be assumed to have capacity unless proven otherwise
- Right to Make Unwise Decisions: People have the right to make decisions that others might consider unwise or irrational
- Maximize Decision-Making: All practical steps must be taken to help someone make their own decisions
- Best Interests: Any decision made for someone who lacks capacity must be in their best interests
- Least Restrictive Option: Consider whether the purpose can be achieved in a less restrictive way
✅ Two-Stage Capacity Test
Stage 1: Impairment Test
Is there an impairment or disturbance of mind or brain?
- • Dementia, delirium
- • Learning disability
- • Mental illness
- • Brain injury
- • Intoxication
Stage 2: Functional Test
Can they:
- • Understand the information
- • Retain the information
- • Use/weigh the information
- • Communicate their decision
📋 DNACPR Decision Framework
When CPR Would Not Be Successful
Clinical decision - no need to discuss with patient unless they ask
When CPR May Be Successful But...
Discuss with patient/family about benefits, burdens, and likely outcomes
Patient Refuses CPR
Respect autonomous decision if patient has capacity
⚠️ Common DNACPR Misconceptions
DNACPR Does NOT Mean:
- • Do not treat
- • Withhold other treatments
- • No hospital admission
- • No antibiotics
- • Giving up hope
DNACPR Means:
- • No chest compressions
- • No defibrillation
- • No intubation for CPR
- • Allow natural death
- • Continue all other appropriate care
💬 DNACPR Conversation Guide
Opening:
"I'd like to talk about what would happen if you became more unwell. Have you thought about what kind of care you would want?"
Explaining CPR:
"CPR involves chest compressions and electric shocks. In your situation, it's very unlikely to work and could cause suffering."
Reassurance:
"This doesn't change any of your other treatments. We'll continue to focus on keeping you comfortable and treating your symptoms."
📋 ReSPECT - Recommended Summary Plan for Emergency Care & Treatment
What is it: A personalised future emergency plan. One section of the Advanced Care Plan umbrella – specifically focusing on "in the event of an emergency".
Why ReSPECT? What was wrong with DNACPR?
- • DNACPR problems: Often negative for patients (not involved), negative for doctors (don't like making decisions without patient involvement)
- • ReSPECT solution: Encourages INVOLVING the patient - it's their life after all
- • Early involvement: Involve patients EARLY rather than late when they may not be able to make decisions
📋 Advance Care Planning
| Document Type | Legal Status | Content | Requirements |
|---|---|---|---|
| Advance Statement (ADPW) | Not legally binding | Preferences, values, beliefs | Written or verbal |
| Advance Decision (ADRT) | Legally binding | Refusal of specific treatments | Written, signed, witnessed |
| Lasting Power of Attorney | Legally binding | Appoints decision-maker | Registered with OPG |
💬 Advance Care Planning Conversations
Key Questions to Explore:
- • What matters most to you?
- • What are your fears/concerns?
- • Where would you like to be cared for?
- • Who would you want involved?
- • Are there treatments you wouldn't want?
Documentation Should Include:
- • Patient's values and beliefs
- • Preferred place of care/death
- • Treatment preferences
- • Important relationships
- • Spiritual/cultural needs
🕊️ Care After Death
Verification, certification, and immediate bereavement support
✅ Verification of Death Checklist
Clinical Examination:
- • No response to verbal/physical stimuli
- • No heart sounds for 1 minute
- • No breath sounds for 1 minute
- • No pupillary response to light
- • No palpable pulse for 1 minute
Documentation:
- • Date and time of death
- • Your name and GMC number
- • Circumstances of death
- • Who was present
- • Any devices removed
📜 Death Certification
When to Refer to Coroner:
- • Cause of death unknown
- • Death within 24 hours of admission
- • Death during/related to surgery
- • Suspicious circumstances
- • Industrial disease
- • Death in custody
💚 Immediate Bereavement Support
Immediate Needs:
- • Allow time with deceased
- • Offer tea/coffee and tissues
- • Explain what happens next
- • Provide written information
- • Arrange safe transport home
Practical Support:
- • Registering the death
- • Funeral arrangements
- • Benefits and financial support
- • Bereavement counseling services
- • GP follow-up appointment
🤝 Family & Carer Support
Supporting those who care for the dying
👥 Carer Assessment Framework
Physical Impact:
- • Sleep disruption
- • Physical exhaustion
- • Own health problems
- • Medication management
- • Manual handling issues
Emotional Impact:
- • Anticipatory grief
- • Anxiety and depression
- • Social isolation
- • Relationship strain
- • Guilt and helplessness
🛠️ Practical Support Services
| Service | Provider | How to Access |
|---|---|---|
| Respite Care | Local Authority/Hospice | Social services assessment |
| District Nursing | NHS Community Services | GP referral |
| Equipment/Aids | Occupational Therapy | Hospital/community OT |
| Counseling | Hospice/Charity | Direct referral |
| Spiritual Care | Chaplaincy/Faith Groups | Hospital chaplain |
💰 Financial Support Options
For Patients:
- • DS1500: Fast-track benefits for terminal illness
- • Personal Independence Payment: Daily living/mobility
- • Employment Support Allowance: If unable to work
- • Universal Credit: Additional elements
For Carers:
- • Carer's Allowance: £76.75/week (2026)
- • Carer's Credit: National Insurance protection
- • Council Tax Reduction: Local authority
- • Flexible Working: Employment rights
👥 Social Assessment