Palliative & End-of-Life Care
Palliative Emergencies — act before completing the history
| Emergency | Why dangerous | Action |
|---|---|---|
| Spinal cord compression — back pain + new leg weakness / numbness / urinary retention | Malignant spinal cord compression (MSCC): oncological emergency; occurs in 5–10% of cancer patients; vertebral metastasis compresses the spinal cord or cauda equina. Window of opportunity: if decompressed before irreversible paraplegia, function can be recovered. Indicators: new back pain (often worse on lying flat or coughing); leg weakness; sensory level; urinary or bowel retention or incontinence. Any suspicion: dexamethasone 8mg IMMEDIATELY (before imaging); urgent MRI; oncology/neurosurgery same-day referral. | Dexamethasone 8mg immediately; same-day MRI; oncology referral; do not wait for imaging before steroids |
| Superior vena cava obstruction — facial swelling, arm swelling, breathlessness on bending forward | Superior vena cava obstruction (SVCO) from mediastinal tumour or lymphadenopathy: venous drainage from head and arms obstructed. Features: facial oedema; periorbital oedema (worse in mornings); arm swelling; distended neck veins; Stokes sign (coat collar feeling); breathlessness. Dexamethasone 16mg immediately to reduce peri-tumour oedema; urgent oncology referral (radiotherapy ± stenting). | Dexamethasone 16mg immediately; urgent oncology referral; emergency if severe respiratory compromise |
| Hypercalcaemia — confusion, constipation, polyuria, nausea, vomiting, dehydration | Hypercalcaemia of malignancy: corrected calcium >2.6 mmol/L; mediated by PTHrP (parathyroid hormone-related peptide) from tumour. Symptoms: “bones, groans, stones and psychic moans” — confusion; constipation; abdominal pain; nausea; polyuria; polydipsia; dehydration. Fatal if untreated. Treatment: IV fluids (4–6L/24h); IV bisphosphonate (zoledronic acid or pamidronate) — bisphosphonates cannot be given without adequate hydration. Hospital admission for treatment. Often the diagnosis because presentation is non-specific and confused with disease progression. | Urgent U&E and corrected calcium; IV fluid resuscitation; IV bisphosphonate (hospital); do NOT give PO bisphosphonates acutely |
| Acute pain crisis — severe uncontrolled pain despite adequate analgesia | Pain crisis in terminal cancer: opioid dose may be inadequate; a new pain generator (pathological fracture; visceral obstruction; nerve infiltration) may require a different approach; inadequate route of administration (vomiting patient on oral opioids). Immediate: subcutaneous morphine or oxycodone PRN from anticipatory medications if available; if not: urgent palliative care phone advice; consider urgent hospice or hospital admission for pain control if severe crisis. Never leave a patient in severe pain at home without a clear plan for medication escalation. | SC PRN analgesia from anticipatory medications; if not prescribed: prescribe today; urgent palliative care team phone advice; consider hospice admission for acute pain control |
| Massive haemorrhage — haemoptysis; haematemesis; rectal bleeding from tumour | Major haemorrhage from tumour erosion of a blood vessel. Can be sudden and catastrophic. For patients at known risk (haemoptysis from lung or head and neck cancer; GI bleeding): advance care planning should address this scenario; family should be briefed; midazolam 10mg SC should be available in anticipatory medications for sedation in catastrophic haemorrhage (not to stop bleeding but to relieve distress). Dark red or green blankets available at home to reduce visual impact. 999 if sudden major haemorrhage and patient not at home (resuscitation may be appropriate depending on goals of care). | If conscious and severe: 999. If at risk: brief family; dark blanket; midazolam in anticipatory medications prescribed in advance |
| Terminal agitation — restlessness, confusion, distress in the last hours to days | Terminal agitation (terminal restlessness): common in the last 24–48 hours of life; causes include urinary retention; constipation; uncontrolled pain; cerebral hypoxia; opioid accumulation; fear; spiritual distress. Assessment first: rule out treatable causes (check catheter; give PRN analgesia). If terminal: midazolam SC PRN (2.5–5mg); or levomepromazine SC PRN (6.25–12.5mg). Via syringe driver if continuous sedation needed. Family preparation: explain this is part of the dying process; it does not necessarily indicate distress if the patient is unconscious; comfort measures are the priority. | Rule out treatable causes; SC midazolam or levomepromazine PRN; consider syringe driver; brief family and nursing team; do not leave isolated |
Safeguarding — Carer Capacity and Vulnerable Adults
👵 Carer Assessment — Dhruv as a Patient
- Dhruv is a vulnerable adult in his own right: 76 years old; exhausted; potentially developing his own health problems in the context of caring
- GP annual review for all registered carers: when did Dhruv last have a check-up?
- Social services: carer’s assessment (legal right under Care Act 2014); eligibility for respite care, night sitting, day centre attendance for Mrs. Patel
- Mental health: depression and anxiety extremely common in carers of dying spouses; PHQ-9 and GAD-7 indicated if any concern; bereavement counselling referral
👨🏫 Mental Capacity and Decision-Making
- Mrs. Patel: does she have capacity to make decisions about her care? (MCA 2005: presume capacity; assess if doubt)
- DNACPR discussion requires capacity: the patient must be able to understand, retain, weigh, and communicate
- If capacity is compromised (pain; medication; confusion from hypercalcaemia): identify any LPA for Health and Welfare; is there a valid ADRT? Best interests decision if no LPA and no capacity
- Capacity is time-specific and decision-specific: document assessment carefully
👥 Family Dynamics and Absent Family
- Daughter in Birmingham arriving next week: what does she know? Has she been told her mother is dying? The GP may need to discuss a family meeting and consider whether Mrs. Patel wants her daughter informed before the visit
- Conflicting family wishes: family members who demand “do everything” against the patient’s clearly expressed wishes — the patient’s valid, capacitous wish always takes precedence
- Children of dying adults: are there grandchildren who may need age-appropriate support? Is there a social worker or community support?
- Cultural differences in family decision-making: some families prefer to make decisions collectively; the patient’s autonomous wish must be kept central
📸 Cultural and Religious Needs
- Mrs. Patel is Hindu: death and dying are governed by specific religious and cultural practices; ask — do not assume — what is important to her and her family
- Common Hindu death practices: the body is traditionally washed and prepared by family members of the same sex; many families wish for time with the body; cremation is usual
- Spiritual care: does she want to see a Hindu priest (pundit)? Is there a local community or religious organisation that can support?
- Diet and medications: some Hindu patients refuse medications derived from animal products (gelatine capsules; certain injections); check and offer alternatives
👵 Carer Exhaustion
Dhruv has been caring for his wife through 7 months of illness, including chemotherapy and progressive disability. Carer breakdown is the single most common cause of failure to achieve home death. Assessment: is he sleeping? Is he eating? Does he have anyone to help him? Does he have his own GP? Protective factors: night sitting provision; day hospice attendance for Mrs. Patel; respite admissions.
"Dhruv, I want to check in on how you are doing. You have been doing so much — this is enormously hard. Is there anything you are finding particularly difficult right now? And when did you last see your own doctor?"🌶 Anticipatory Grief
Both Dhruv and Mrs. Patel are experiencing anticipatory grief — grieving the loss before death has occurred. This is normal and healthy, and it prepares the family for what is coming. But it can be overwhelming and can interfere with practical planning. Psychosocial support: bereavement counselling referral (available before death for anticipatory grief); Macmillan support line; hospice palliative counselling.
"It makes complete sense that you are feeling the weight of all of this — this is the hardest thing that a family goes through. I want you to know that there is support available for both of you, not just Mrs. Patel."🤝 Family Communication
The daughter in Birmingham does not yet know the gravity of the situation (or does she?). Family communication in palliative care is complex: the patient has a right to decide who is told what, and when. Mrs. Patel may want her daughter called immediately; or she may want to see her in person first. The GP should ask — and document — Mrs. Patel’s preferences for family communication.
"Has your daughter been told how things are at the moment? Would it help to speak to her before she arrives, so she has time to prepare? Or would you prefer to wait and talk when she’s here? Whatever you prefer — this is your decision."🌟 Spiritual and Cultural Preparation
Dying is not just a medical event. For Mrs. Patel and her family, it is a spiritual and cultural event. Her religious and cultural needs around the dying process and immediately after death need to be documented: who should be present; whether a pundit is needed; what prayers or rituals are important; arrangements for the body. The GP who raises this — sensitively and early — gives the family time to prepare.
"Mrs. Patel, is there anything about your faith or your cultural traditions that you would like us to know about — things that would be important to you and your family as we support you through this time?"- Starting with a symptom checklist before acknowledging the journey — scores Relating to Others deduction
- Not asking about preferred place of death — it was previously discussed; failure to revisit it misses the key advocacy task
- Not checking what she knows about her prognosis before starting DNACPR discussion
- Not assessing Dhruv — he is a vulnerable carer and a patient in his own right
- Prescribing morphine in syringe driver without checking renal function — potentially dangerous (eGFR 28)
Immediate / 999 / Same-Day Hospital
Act immediately- Spinal cord compression — new leg weakness or urinary retentionDexamethasone 8mg immediately; same-day MRI; oncology / neurosurgery referral
- Massive haemorrhage — tumour erosion of major vesselMidazolam 10mg SC (sedation); dark blanket; 999 if in public setting
- Hypercalcaemia with confusion or severe symptomsHospital admission for IV fluids and IV bisphosphonate
- Superior vena cava obstruction — facial oedema; severe breathlessnessDexamethasone 16mg immediately; urgent oncology referral
- Severe uncontrolled pain crisis — no effective route of administrationSC analgesia from anticipatory medications; if not prescribed: urgent palliative care team advice; consider hospice admission
Same Day
Same-day community response- Vomiting preventing oral medication absorption — syringe driver neededMrs. Patel’s presentation: prescribe syringe driver medications today; arrange community nursing today to set up driver
- Uncontrolled pain despite adequate opioid prescriptionPRN SC analgesia today; opioid dose review; palliative care team advice
- Carer breakdown — sole carer reporting inability to continueEmergency respite assessment; hospice admission if no other option
Planned GSF Review
Scheduled- GSF register review — symptom control; preferences; carer supportPlanned palliative care review; anticipatory medications review; care plan update
- DNACPR and advance care planning discussionScheduled in a quiet, unhurried consultation — not as an add-on to a routine appointment
- Medication rationalisation and reviewStop non-essential medications; review analgesia; review antiemetics; laxatives essential
- SR1 form completion; benefits review; carer’s assessment referralAdministrative palliative care tasks — important but not urgent today
- Sending the patient home without addressing the fact that she cannot absorb her analgesia — this is patient safety failure; she is effectively receiving no analgesia
- Increasing the oral morphine dose when vomiting is preventing absorption — increasing a dose that is not being absorbed does not help
- Excessive examination in a frail dying patient without clear management intent — causes discomfort; wastes precious consultation time that should be spent on goals of care discussion
- Ordering routine blood tests (LFTs; TFTs; FBC without specific indication) in a patient who is in the last weeks of life — burdensome without benefit; inconsistent with patient-centred palliative care
- Prescribing syringe driver medications without checking current renal function — safety risk
"I want to be honest with you, Mrs. Patel, because I think you deserve that — and because it helps us plan properly for what is ahead. From everything I am seeing and everything the hospital team has told me, your cancer has progressed to the point where we are no longer trying to treat it and make it smaller — we are now focused entirely on keeping you as comfortable as possible and helping you live in the way that matters most to you. That means we have moved into what we call the palliative phase. Most people in your situation, with the kind of cancer you have at this stage, are thinking about months rather than years — but exactly how long is impossible to say for anyone, and everyone is different. What I can tell you is that we are going to be with you every step of the way."
"How long do I have?"
"I wish I could give you a definite answer — no doctor can. What I can tell you is that from where things are now, we are thinking about months rather than years — and within that, I want to make sure every week and every month is as good as it can be. Is there something specific you are trying to plan for?"
"I don’t want to know. Just tell me what to do."
"I completely understand — and that is entirely your choice. What I will do is make sure that whatever happens, you are comfortable, you are supported, and you are at home. You do not need to know every detail — we will take it one day at a time."
“Would I be surprised if this patient died within 12 months?” Answer No: add to palliative register. Additional GSF triggers: cancer with performance status deterioration; two or more emergency admissions in 6 months; ECOG ≥3; multiple comorbidities with decline. SPICT criteria. NECPAL score. Annual GSF register review mandatory — and at every key deterioration.
Last weeks: ECOG 3–4; weight loss; reduced intake; bed-bound most of day
Initiate anticipatory medications. Syringe driver if oral route failing. Community nursing daily. DNACPR and ACP conversations. OOH alert. SR1 form.
Last days/hours: mottling; Cheyne-Stokes; not responsive; cold peripheries
All four anticipatory medications accessible immediately. Family briefed. Cultural/spiritual preparation. Mouth care. Stop monitoring. Prepare death certificate.
DNACPR ≠ Do Not Treat
Apply to CPR only. All other treatments continue unless separately discussed. Never ask “do you want CPR?” — frame as clinical recommendation based on patient’s goals. RESPECT form (England; Wales; Scotland): broader; records values and priorities; used by ambulance; OOH; hospital. Must be signed and accessible. Share with patient; family (with consent); OOH; ambulance; community nursing.
- Asking "do you want CPR?" — the question should never be asked in this way; it shifts a clinical decision inappropriately to the patient and causes distress; the framing is: "I want to make a recommendation about what we do if your heart stops" and then share the clinical reasoning
- Starting DNACPR without first establishing prognosis awareness
- Not arranging community nursing to set up the syringe driver — it cannot be done by Dhruv or by the GP alone in a community setting; nursing support is essential
- Forgetting to update OOH records — in the SCA, this is a Tasks criterion; the GP must demonstrate awareness of the whole team, not just today’s prescription
Validate the wish — take it seriously as a clinical target
Home death is a legitimate and achievable care goal — but only if it is named and planned for explicitly. Most NHS deaths do not happen at home because the system defaults to hospital. The GP who names this as a target, documents it, and builds the infrastructure around it is the most important advocate for a home death.
"You have told me you want to be at home. That is completely understandable and I am going to do everything I can to make that possible. Let me tell you what we need to put in place to give it the best chance of working."Be honest about the barriers
A plan that promises home death without acknowledging the real barriers will fail. Dhruv’s capacity; night-time support; anticipatory medications; what to do in a crisis — these must all be named and addressed. Honesty here is kindness: a collapse at 3am and an emergency hospital admission is the worst outcome.
"The main thing that will determine whether you can stay at home is whether Dhruv has enough support — especially at night. I want to make sure we have nursing help in place so that he is not alone managing things."Identify what “home” means to her
“Dying at home” means different things to different people: to some it means staying in the house at all costs; to others it means being cared for by people she trusts and not dying alone in a strange place. Understanding what home means — the values underneath the preference — means the hospice option can be offered without it feeling like a betrayal if home death becomes impossible.
"When you say you want to die at home — can I ask what that means to you? Is it being in your own bed, or being close to Dhruv, or being somewhere familiar? I want to understand what is most important so we can protect that, whatever happens."Dry mouth (xerostomia) is one of the most distressing symptoms in the dying phase: caused by mouth breathing; reduced fluid intake; anticholinergic medications (hyoscine). Badly managed dry mouth causes pain, difficulty speaking, and inability to communicate wishes in the last hours. A moisturised mouth is a fundamental comfort measure that any carer can provide.
Oral swabs (pink sticks) dipped in water or artificial saliva every 1–2 hours. Small sips of water if patient can swallow safely. Lip balm. Ice chips. Teach Dhruv to do this confidently — it gives him a caring role in the last days.
Bedbound patients develop pressure ulcers (sacrum; heels; occiput; trochanters) rapidly — days to develop in a malnourished, immobile, dying patient. Pressure ulcers cause significant pain and reduce quality of remaining life. Prevention: pressure-relieving mattress (referral via district nursing); 2-hourly repositioning; padding for bony prominences. In the last days: comfort repositioning rather than strict turning schedule.
District nursing referral: pressure-relieving mattress (air mattress or similar; available via NHS equipment store). Hospital bed at home if needed (via district nursing or hospice at home). Teach Dhruv simple repositioning with a slide sheet. Heels: heel protectors or foam padding under mattress.
Breathlessness in cancer: caused by pleural effusion; lung metastases; anaemia; anxiety; ascites. Non-pharmacological: fan directed at the face (proven effective; stimulates trigeminal receptors that reduce breathlessness perception); open window; upright positioning. Pharmacological: low-dose opioids (morphine 2.5–5mg 4-hrly SC) reduce breathlessness centrally; anxiolytics (midazolam) reduce the anxiety component of breathlessness. Supplemental oxygen: only beneficial if sats <88%; often not helpful and may prolong dying process.
Provide a small hand-held battery fan for home use. Ensure Dhruv understands how to position Mrs. Patel. If breathlessness worsens acutely in the last days: midazolam PRN from anticipatory medications. Pleural effusion causing significant breathlessness: thoracentesis (palliative drainage) may be appropriate even in terminal phase if it significantly improves quality of life — refer to palliative care team.
Spiritual and psychological wellbeing is a clinical domain in palliative care (NICE NG31). The GP who neglects this domain is providing incomplete care. For Mrs. Patel: Hindu tradition; death rituals; pundit; family preparation. For Dhruv: his own spiritual needs; his anticipated role after her death; community support. Chaplaincy referral (hospital or community): not limited to religious patients; includes existential support.
"Is there anything about your faith or traditions that you would want us to know — things that matter to you at this time?" "Is there a priest or a community member you would want to see?" "Are there things that should or should not happen after you die that we should be aware of?"
Dhruv is 76 and sole carer. Carers of dying spouses have 4× the risk of depression, anxiety, and physical illness. He is also likely experiencing anticipatory grief. The GP’s duty of care extends to Dhruv: annual carer review; PHQ-9 if depression suspected; referral for carer’s assessment (Social Services; Care Act 2014); registration as a carer on the practice list (triggers QOF carer registers and annual review).
Marie Curie night nursing (free; via referral). Day hospice for Mrs. Patel (respite for Dhruv during the day). Carer’s assessment: entitles Dhruv to support in his own right from Social Services. Bereavement counselling referral: available now, before death (anticipatory grief), and after death. Carers UK helpline: 0808 808 7777.
SR1 (formerly DS1500): completed by GP or hospital doctor; sent to DWP; enables fast-track state benefits for patients with a terminal illness (expected prognosis <12 months). Benefits triggered: higher-rate PIP/DLA; Universal Credit terminal illness element; pension credit; Employment and Support Allowance terminal illness component. Prescription exemption: FP92A form (lifetime exemption for cancer patients). Free NHS dental and sight tests.
LPA for Health and Welfare (Lasting Power of Attorney): if not already in place, refer to solicitor or LPA service (GOV.UK — can be done online). Valid only once registered and only activated when the person loses capacity. Advance Decision to Refuse Treatment (ADRT / Living Will): legally binding refusal of specific treatments; must be in writing; signed; witnessed. Will: may want to update — not the GP’s role, but can prompt the patient to seek legal advice.
"Mrs. Patel, there is something I need to discuss with you — I want to ask your permission to talk about something that I think is important for us to plan for, even though it is difficult."
"I need to talk about what should happen if you were to have a crisis — if your heart were to stop. I want to explain what would happen, and share my medical view about what would be most helpful for you — and I want to hear your thoughts."
"If your heart stopped, the team would attempt resuscitation — but in your situation, with your illness at the stage it is, I do not think that CPR would help you. It is a very difficult process and would be unlikely to work — and even if it did briefly, it would not change what is happening with your cancer."
"My recommendation is that we do not attempt resuscitation, so that if your heart does stop, we focus entirely on keeping you comfortable and peaceful. All your other care — your pain medication, your nursing, being at home — continues exactly as planned."
"I understand this is very difficult to hear. Can you tell me what you are feeling?"
If patient or family disagrees: explore the concern. Often: they think DNACPR means giving up on treatment (it does not); or they misunderstand what CPR involves (it causes rib fractures; rarely successful in terminal illness). Address each concern directly. The final decision is a clinical one — but patient engagement and shared understanding are essential.
Select clinical scenario — syringe driver and anticipatory medication guidance
"The driver goes just under Amrita’s skin — usually her tummy or arm. It runs all the time and puts her pain medicine in continuously. If she seems to be in extra pain, the nurses can give her an extra dose through the driver — that is what the separate ‘top-up’ medicine is for. You do not need to do anything with the driver yourself — the nurses check it every day. If it bleeps or looks different, ring them directly."
Opioid conversion in SCA: oral morphine ÷ 3 = SC diamorphine (where available); oral morphine ÷ 2 = oral oxycodone ÷ 1.5 = SC oxycodone. Renal impairment (eGFR <30): use oxycodone SC not morphine SC — this is the most commonly failed safety criterion in palliative care SCA cases. PRN dose = 1/6 of 24h syringe driver dose. Always state you would seek palliative care team phone advice for dose confirmation — this scores a Tasks mark in SCA.
"This medicine helps with restlessness and breathlessness — it is a gentle sedative. If she looks distressed at any point, the nurses can give it to make her more comfortable. I want to reassure you that this medicine is there to relieve suffering — it is not going to shorten her time."
Midazolam SC: anticipatory medication for agitation and breathlessness in palliative care — one of the four SAAS anticipatory medications. PRN 2.5–5mg SC; continuous syringe driver 10–30mg/24h. Massive haemorrhage protocol: midazolam 10mg SC immediately (sedation; comfort). Paradoxical agitation: rare; seek palliative care team advice; switch to levomepromazine. Families: reassure that sedation relieves suffering and does not hasten death. Document indication clearly in care plan.
"This medicine goes into the driver to help with the sickness. It works on the part of the brain and inner ear that controls nausea. She should find that the sickness settles within a few hours of the driver going in."
Cyclizine SC: first-line antiemetic in palliative syringe driver — one of the SAAS anticipatory medications. 150mg/24h in syringe driver; 50mg SC PRN. Do NOT mix with levomepromazine (antagonism; precipitate). Bowel obstruction: levomepromazine + hyoscine butylbromide (not cyclizine; not metoclopramide in complete obstruction). Causes of nausea in cancer: opioid-induced (most common); raised ICP; hypercalcaemia; bowel obstruction; gastric outlet obstruction — each has a different antiemetic approach.
"The noise you can hear is coming from Amrita’s throat — it is not a sign that she is struggling. We are going to give her a medicine to dry up those secretions. Please know that she is not distressed or in pain."
Hyoscine butylbromide (Buscopan): SC antisecretory — SAAS anticipatory medication for “death rattle” (terminal secretions). 20mg SC PRN; 60–120mg/24h syringe driver. Distinguish from hyoscine hydrobromide (more CNS sedating; different preparation). Reassure family: “death rattle” is not patient distress — family education is as important as the medication. Bowel obstruction: hyoscine butylbromide reduces secretions and colic; metoclopramide contraindicated in complete obstruction.
"These tablets are strong pain medicines. I want to tell you what to expect: they may make you a little sleepy at first, which is normal. Some people feel a bit sick in the first few days — I am giving you some medicine for that. They will also make you constipated, which is why I am giving you a laxative at the same time. Please do not stop them without telling me, even if you feel the pain has settled."
Morphine: gold standard palliative opioid; CONTRAINDICATED in eGFR <30 (M6G accumulation). Opioid naïve: start 2.5–5mg oral 4-hrly + PRN. Syringe driver: total oral dose ÷ 3 = 24h SC diamorphine. Always prescribe laxative. PRN breakthrough = 1/6 of 24h dose. Accumulation signs: myoclonus; sedation; confusion — reduce dose; check renal function. Constipation is never acceptable — laxative with every opioid prescription.
"This is a steroid tablet — we use it for several things in your situation. It should help with your appetite and reduce some of the discomfort around your liver. Please take it in the morning with food. I will also prescribe a stomach protection tablet to go with it. I want to review it in a week to make sure it is helping."
Dexamethasone: multiple palliative indications. MSCC: 8mg IMMEDIATELY on suspicion (before MRI) — this is a time-critical SCA task. SVCO: 16mg/day immediately; oncology referral. Appetite/fatigue: 2–4mg OD morning; review after 5–7 days; wanes after 4–6 weeks. Hepatic capsule pain: 8mg OD. Always: PPI gastroprotection; take in the morning. Do not give in syringe driver with opioids (separate SC injection). Do not stop abruptly (adrenal suppression). Review at 5–7 days.
Carer (Dhruv)
Dhruv is experiencing anticipatory grief; physical exhaustion from caring; isolation; and the terror of being alone with his dying wife. He needs active support from the GP team — not just as Mrs. Patel’s carer, but as a vulnerable adult in his own right. He needs to know who to call in a crisis (community nursing OOH line; not 999 if expected home death). He needs to know what death will look like so he is not terrified when it happens.
"Dhruv, how are you sleeping? When did you last have a chance to look after yourself? I want to make sure you have support too — this is the hardest thing there is."Family Communication
The daughter in Birmingham is coming next week and does not yet know the severity of the situation. Mrs. Patel needs to decide — with the GP’s support — what she wants her daughter to know and when. Preparing family members for what they will see when they arrive (how her mother will look; how ill she is) prevents traumatic shock on arrival and enables a purposeful visit.
"Would it be helpful if we wrote to your daughter together — or I could call her — to help prepare her before she arrives? I want her visit to be a good one for both of you."Spiritual and Cultural Preparation
Hindu death practices: the body is typically bathed and prepared by family immediately after death; a priest (pundit) may be required; cremation is usual and may have specific timing. The GP who has documented these preferences — and who has alerted the community and nursing team — ensures that the patient’s cultural needs are met without distress in the immediate period after death. Do not make assumptions — ask.
"Is there a pundit or someone from your community you would want to see before that time, or when the time comes? And are there things we should know about what should happen to Amrita’s body and how you would like things to be?"Anticipatory Grief and Bereavement Planning
Bereavement support should be initiated before death, not only after. Referral to Macmillan palliative counsellor or Cruse Bereavement Support for Dhruv now — before the death — means support is already in place for the period immediately after. GP also plays a key role: bereavement contact call at 2 weeks; mental health review at 6 weeks; antidepressant discussion if grief is becoming complicated bereavement (prolonged; impairing function beyond 6–12 months).
"When the time comes, and after, I want to make sure you are not alone, Dhruv. I am going to refer you to a counsellor who can support you through this — starting now, not after."Today — Syringe driver initiation and anticipatory medications
Confirm renal function (U&E); confirm syringe driver medications (oxycodone SC + midazolam + cyclizine + hyoscine butylbromide); prescribe all four anticipatory medications; arrange district nursing today to set up syringe driver; update SCR with DNACPR status; preferred place of death; anticipated medications; OOH alert; night sitting referral (Marie Curie); DNACPR/RESPECT form discussed and completed; SPECT palliative care referral; SR1 form completed.
24–48 Hours — Syringe driver review; pain and nausea reassessment
Phone or home visit: is the syringe driver running? Is Mrs. Patel’s pain controlled? Is nausea settling? How many PRN doses have been used? If >3 PRN doses in 24h: increase 24h syringe driver dose by 30–50%. Dhruv: how is he managing? Night sitting in place? Palliative care Macmillan nurse: has she visited? RESPECT form: has Dhruv received a copy?
Weekly — GSF register review; symptom assessment
Weekly GP review or community nurse review: symptom burden (pain; nausea; breathlessness; secretions); ECOG functional status; DNACPR and care plan review; carer support (Dhruv); daughter’s visit — how did it go? Any change in preferred place of death? Spiritual and cultural needs: has the pundit visited? Benefits (SR1 form submitted). Medication rationalisation: which medications can now be stopped?
At Deterioration — Brief family on expected death; last days care
When active dying signs appear (mottling; Cheyne-Stokes; unconscious; cold peripheries): OOH service notified of expected death; family briefed on what to expect and what NOT to do (do not call 999 if DNACPR in place and home death expected); all four anticipatory medications accessible and PRN available immediately; syringe driver running; mouth care explained to Dhruv; chaplaincy / pundit alerted.
After Death — Death certification; carer support; bereavement
Death certification: GP must attend to verify death (Medical Certificate of Cause of Death; MCCD) or arrange cremation medical forms if required; anticipated home death should be straightforward. Dhruv: bereavement call at 2 weeks; GP review at 6 weeks (complicated grief; depression; physical health); ensure Macmillan/Cruse bereavement counsellor is engaged. Statutory notifications if required (coroner: if GP has not seen patient in 28 days or uncertain cause of death; report to coroner, not police, for unexpected death even at home in palliative setting).
Memory rule — SAAS anticipatory medications
Palliative anticipatory medications: Subcutaneous opioid (pain); Anxiolytic (midazolam — agitation; breathlessness); Antiemetic (cyclizine or levomepromazine — nausea); Secretions (hyoscine butylbromide — terminal secretions). Prescribe all four before they are needed. Syringe driver renal rule: eGFR <30 → oxycodone SC (not morphine); eGFR >30 → morphine SC or SC diamorphine. Opioid calculation: oral morphine ÷ 3 = SC diamorphine; oral oxycodone ÷ 1.5 = SC oxycodone. PRN = 1/6 of 24h driver dose.
⚠ Three critical safety-net conversations for palliative care
Documentation requirements
- Prescribing morphine SC in a patient with eGFR 28 — potentially dangerous; oxycodone required
- Not completing DNACPR / RESPECT form — key task in this scenario; not completing it means Mrs. Patel is at risk of unwanted CPR
- Not addressing preferred place of death explicitly — it was previously discussed and documented; revisiting it is essential as it may have changed
- Sending patient home without arranging community nursing to set up syringe driver — critical failure of care co-ordination
- Forgetting to assess or support Dhruv — carer assessment is a Tasks criterion; he is a vulnerable adult and a patient in his own right
- Syringe driver initiation with renal function checked (oxycodone not morphine)
- All four SAAS anticipatory medications prescribed and accessible
- DNACPR / RESPECT form completed with patient
- Preferred place of death explored; barriers named and addressed
- Community nursing arranged same day for driver setup
- OOH alert and SCR updated before end of day
- Carer (Dhruv) explicitly assessed and supported
- Emotional opener before symptoms
- ICE all three: prognosis awareness; fears explored; what a good death means
- DNACPR framed as clinical recommendation; not a question
- DNACPR ≠ Do Not Treat clearly explained to patient and Dhruv
- Dhruv addressed directly and compassionately
- Cultural and spiritual needs explored
- Closing question asked with genuine pause
Who you are
Mrs. Amrita Patel, 74, retired schoolteacher. You were diagnosed with pancreatic cancer 7 months ago. You had chemotherapy but the consultant told you a few weeks ago that it was not working and they were stopping treatment. You know your cancer is “not curable” — the word “dying” has not been said explicitly, but you know in your heart that this is where things are going. Your husband Dhruv, 76, is in the waiting room. He is struggling. You have one daughter, Priya, who is a teacher in Birmingham. She is coming to visit next weekend. She does not yet know how serious things are — you have been protecting her. You want to die at home. You do not want to die in hospital. You are not frightened of death itself — you are frightened of dying in pain and of leaving Dhruv alone.
Hidden agenda — disclose only if asked directly and with warmth
Priya (disclose if asked about family): “My daughter is coming at the weekend. She doesn’t know — I haven’t told her how bad things are. I don’t want her to worry.” If GP asks: “Would it help if we spoke to her together, or helped her understand before she arrives?” — Mrs. Patel becomes visibly relieved: “I think … I think I want her to come sooner. I’m not sure I have until the weekend.” This is the emotional heart of the consultation.
Dhruv (disclose if asked about carer support or nights): “He’s not sleeping. He is up every time I make any noise. I feel guilty — he is 76 and he is not well himself.” If GP says they will arrange night nursing: visible relief. “He won’t accept help — I need you to tell him it is OK to accept it.”
Fears about the syringe driver (disclose if asked about the driver or concerns): “My sister had one when she died. I thought it was what killed her. Is that … is that what happens?” This misunderstanding is very common and must be addressed directly. If GP explains clearly that the driver is for pain control and does not hasten death: Mrs. Patel accepts it.
Responses to key clinical conversations
- On DNACPR framed as “do you want CPR?”: distressed; confused; “I don’t know — what would happen?”; escalates anxiety. If framed as clinical recommendation with clear reasoning: “I don’t want machines doing things to me — I just want to be comfortable and at home”; agrees
- On syringe driver (after reassurance about driver not hastening death): “If it means I won’t be in pain — yes. Whatever it takes.”
- On prognosis (if asked what she knows): “They said the chemo wasn’t working. I think … I think we’re running out of options. Am I right?”; if GP confirms directly and compassionately: tears; then “How long?”
- On cultural preferences (Hindu traditions): “I want a pundit — not afterwards, now. I would like him to come soon. And when I die — please don’t move my body before Dhruv and Priya have had time with me.”
Clinical details
- Age 74; metastatic pancreatic adenocarcinoma; ECOG 3; mainly bedbound
- Current morphine: 20mg 4-hrly = 120mg oral morphine/24h (but has not been absorbing it; 4 days of vomiting)
- Renal function (3 weeks ago): eGFR 28 — CKD 3b — CRITICAL for opioid choice
- BP 98/62; HR 88; temp 36.7; weight (last recorded 3 weeks ago): 52 kg
- No signs of hypercalcaemia; no neurological symptoms; no signs of MSCC; no bowel symptoms suggesting obstruction
- PMH: type 2 diabetes (metformin — should now be stopped given renal function and nil by mouth); hypertension (amlodipine — consider stopping)
Resolution: Mrs. Patel agrees to the syringe driver once the misunderstanding about it hastening death is resolved. She agrees to the DNACPR form. She asks the GP to help contact Priya to come sooner — and the GP does this with her, in the consultation. She is relieved about the night nursing for Dhruv. She leaves with a plan she understands, her fear of uncontrolled pain addressed, and a phone number to call at any time. She says: “I want you to know — I am not afraid to die. I just want to be ready.”
| Starting opioid | Conversion | Result | Key condition |
|---|---|---|---|
| Oral morphine | ÷ 3 | = SC diamorphine (24h syringe driver) | Avoid if eGFR <30 (M6G accumulation) |
| Oral morphine | ÷ 2 | = Oral oxycodone (24h) | — |
| Oral morphine | ÷ 3 (oral morphine ÷ 2, then ÷ 1.5) | = SC oxycodone (24h syringe driver) | Preferred in eGFR <30 |
| Oral oxycodone | ÷ 1.5 | = SC oxycodone (24h) | — |
| Mrs. Patel example: Oral morphine 120mg/24h + eGFR 28 → oral morphine ÷ 2 = 60mg oral oxycodone ÷ 1.5 = 40mg SC oxycodone/24h. PRN dose = 40 ÷ 6 = ~7mg SC oxycodone hourly | |||
| S — Subcutaneous opioid | A — Anxiolytic / sedative | A — Antiemetic | S — Antisecretory |
|---|---|---|---|
| SC oxycodone (eGFR <30) or SC diamorphine (normal renal) — PRN dose = 24h total ÷ 6 | Midazolam 2.5–5mg SC PRN (agitation; breathlessness; terminal restlessness) | Cyclizine 12.5mg SC PRN; or haloperidol 500mcg–1mg SC PRN. Do NOT mix cyclizine + levomepromazine in same syringe (antagonism) | Hyoscine butylbromide 20mg SC PRN; also via syringe driver for secretions (“death rattle”) |
| Emergency | First action | Drug | Key rule |
|---|---|---|---|
| MSCC (Malignant Spinal Cord Compression) | Dexamethasone 8mg IMMEDIATELY on clinical suspicion; MRI same day | Dexamethasone 8mg IV or oral — before imaging | Do NOT wait for MRI to start dexamethasone — irreversible cord damage if delayed |
| SVCO (Superior Vena Cava Obstruction) | Dexamethasone 16mg immediately (higher dose than MSCC) | Dexamethasone 16mg oral or IV | Haematology / oncology / stenting — urgent 999 if severe respiratory compromise |
| Hypercalcaemia of malignancy | IV fluids + IV bisphosphonate (hospital) | IV pamidronate or zoledronic acid | Oral bisphosphonates are NOT effective acutely; this is a hospital treatment |
CHC fast-track: for patients with rapidly deteriorating terminal condition with significant nursing needs; may fund 24-hour home care. Refer via CHC fast-track form. MCA 2005: 5 principles · ADRT: legally binding · LPA: registered + activated; check before acting against wishes · Best interests decision if no capacity and no ADRT/LPA
“I think the honest answer is yes — I think it would be good for Priya to come soon. I don’t know exactly when, but I want to make sure the people who love you are with you. What would it take for Priya to come?”