Executive summary
- Recognising dying is a clinical skill — and a prerequisite for excellent end-of-life care. Many deaths in the community remain unplanned and distressing because the dying phase was not identified in time.
- Anticipatory prescribing (the "just in case" box) should be in place before a patient enters the dying phase. Waiting until a patient deteriorates acutely to prescribe out-of-hours causes unnecessary suffering.
- DNACPR and ReSPECT decisions are about the quality of dying, not the value of life. They should be discussed proactively, documented, and shared with all involved services.
- The four priority symptoms in the last days of life are: pain, breathlessness, agitation/distress, and respiratory secretions. Each has a specific anticipatory medication approach.
Recognising the dying phase
- The four indicators (NICE NG31): The clinical team believes the patient may be dying; the patient is deteriorating day by day; there is no reversible cause; and the patient, family, and team agree the focus is comfort. All four should be considered together.
- Clinical signs of dying: Increasingly bed-bound, reduced oral intake (days to hours), decreased urine output, changes in breathing pattern (Cheyne-Stokes, periods of apnoea), peripheral mottling and cyanosis (livedo), profound weakness, and reduced consciousness.
- Reversible causes to exclude: Infection, metabolic derangement (hypercalcaemia, uraemia), opioid toxicity, constipation, urinary retention, and medication side effects. These should be assessed and addressed where appropriate and consistent with the patient's wishes.
- Communicate clearly with the patient (if able), their family, and all involved services (OOH, district nursing, palliative care team) that the patient is likely in their last days.
Anticipatory prescribing ("just in case" medications)
- Prescribe subcutaneous (SC) PRN medications for the four key symptoms before the patient deteriorates acutely. This allows community/district nurses to administer promptly without waiting for an emergency call.
- Pain and breathlessness: Subcutaneous morphine sulfate. Opioid-naïve: typically morphine 2.5–5 mg SC PRN 4-hourly. If already on regular oral morphine, calculate the SC equivalent (oral morphine ÷ 2 = SC morphine equivalent). For opioid-naïve patients with severe renal impairment, use alfentanil (specialist input advisable).
- Agitation and distress: Midazolam 2.5–5 mg SC PRN 4-hourly. Titrate as needed. Levomepromazine 6.25–12.5 mg SC PRN can be used for severe distress or if midazolam alone is insufficient — it also has antiemetic and antipsychotic properties.
- Nausea and vomiting: Metoclopramide 10 mg SC PRN (avoid in bowel obstruction) or cyclizine 50 mg SC PRN (avoid if cardiac failure).
- Respiratory secretions ("death rattle"): Glycopyrronium 200 micrograms SC PRN 4-hourly (does not cross the blood-brain barrier, so less sedating than hyoscine). Hyoscine butylbromide 20 mg SC is an alternative.
- Syringe driver (CSCI): Once PRN use is established and symptomatic need is regular, move to continuous subcutaneous infusion via syringe driver. Calculate the total 24-hour PRN use and convert to a continuous rate. District nurses can manage syringe drivers in the community.
DNACPR and ReSPECT
- DNACPR (Do Not Attempt Cardiopulmonary Resuscitation): A clinical decision made when CPR is unlikely to be successful or is not in keeping with the patient's wishes. It requires a senior clinician decision and should be discussed with the patient (and family with consent) using clear, non-jargon language.
- ReSPECT (Recommended Summary Plan for Emergency Care and Treatment): A broader document that records the patient's priorities for care and treatment escalation decisions, goes beyond DNACPR alone. Should be completed and shared with: the patient, family, GP record, OOH services, ambulance service, and district nursing team.
- DNACPR is not a "do not treat" order. Make this explicit to families. Comfort care, symptom management, and active support continue fully.
- Mental capacity must be assessed. If the patient lacks capacity, the decision is made in their best interests, consulting those close to them and any lasting power of attorney (LPA) for health and welfare.
Frequently asked questions
A family member is worried that morphine will "hasten death" — how should I respond?
This is one of the most common and important concerns to address. Evidence consistently shows that opioids titrated appropriately for symptom control in the dying patient do not hasten death. The doctrine of double effect does not routinely apply at therapeutic doses. Untreated pain and breathlessness cause active suffering. Explain this clearly and compassionately, and document the conversation.
My patient at home has deteriorated acutely and I have not yet prescribed anticipatory medications — what do I do?
Contact the out-of-hours GP service or palliative care on-call team immediately to arrange urgent prescribing. In some areas, district nurses have a supply of anticipatory medications (a "nurse prescribing" or "nurse access" scheme) — check local arrangements. If the patient is in severe distress, admission to a hospice or hospital may be necessary in the short term while community prescribing is established.
When should I involve the specialist palliative care team?
Involve them early — ideally at diagnosis of a life-limiting illness, not only in the last hours. Specialist input is particularly valuable for: complex pain or symptom management, existential distress, complex family situations, uncertainty about prognosis or diagnosis, and support for staff in difficult cases. Most hospices have community specialist palliative care nurses who can provide advice by telephone.
The patient does not want to discuss dying — can I still make a DNACPR decision?
Yes. DNACPR is a clinical decision. There is no legal requirement to obtain the patient's consent to a DNACPR decision, but the patient must be informed unless this would cause them serious harm (which is very rarely the case). The approach should be compassionate, not abrupt — a sensitive conversation about their priorities and what they would want in an emergency is often achievable even in patients who initially resist direct discussion of dying.
Transparency
This page is an educational, clinician-written summary of publicly available NICE guidance intended for trained healthcare professionals. It uses original wording (not copied text) and should be used alongside the full NICE source, local pathways, and clinical judgement. Doses provided are for general reference; always check the BNF/SPC.