Advance care planning and end-of-life oncology

01OverviewDefinition, clinical context and the essential points that orientate the chapter.

Advance care planning begins with the person, not a prediction. Ask what they understand, what they hope treatment can achieve, what abilities matter most and what burdens would be unacceptable. Some want detailed future planning; others want a trusted relative or clinician to guide decisions. Participation remains voluntary. A concise record of values and decision-makers is often more useful across uncertain scenarios than a long list of hypothetical interventions.

Legal tools have distinct functions. An advance statement records wishes and preferences and informs best interests. An advance decision can refuse specified future treatment and, when it refuses life-sustaining treatment, has formal validity requirements. A registered health-and-welfare attorney acts only after capacity is lost and only within conferred powers. Capacity is assessed for the actual decision at the actual time after communication support and reversible delirium are addressed.

Resuscitation and escalation are separate. DNACPR records that CPR should not be attempted because it is not wanted or will not provide benefit; it does not cancel ordinary treatment. A broader emergency plan explains which hospital, antibiotic, fluid, ventilation or procedural interventions fit the person’s goals and likely outcomes. Recommendations remain clinical: a patient cannot demand a treatment that will not work, but deserves a clear explanation and route for review.

In the last days, treatment becomes simpler but not less skilled. Review reversible causes that could improve comfort, stop preventive medicine without near-term benefit and ensure a non-oral route. Anticipatory prescriptions are tailored rather than copied. Families need explanation that reduced appetite, urine and altered breathing are expected and that noisy secretions do not necessarily mean choking. Hydration can be trialled with a goal and stop rule; routine litres can worsen oedema and secretion.

Key points

Advance care planning is a voluntary, revisable conversation about values, worries, acceptable outcomes, preferred care, decision-makers and treatments if health worsens; it is not one form.
Start when the patient is well enough to think and revisit after progression, hospital admission, treatment change or functional decline; ask permission and match the pace.
Record what matters, what the person understands, whom they want involved and any health-and-welfare lasting power of attorney, advance statement or advance decision to refuse treatment.
Capacity is presumed and decision specific. Support communication, treat delirium and assess whether the person can understand, retain, use or weigh and communicate the relevant information.
A valid and applicable advance decision refusing life-sustaining treatment is legally binding when capacity is lost; an advance statement guides best interests but is not the same legal instrument.
A health-and-welfare attorney can decide only within the authority granted and only when the person lacks capacity; consult the document rather than relying on a family title.
DNACPR addresses CPR only. A treatment-escalation or ReSPECT plan separately explains hospital transfer, antibiotics, fluids, ventilation and other interventions likely or unlikely to help.
Clinicians are not required to offer treatment that cannot work or provide overall benefit, but should explain the reasoning, involve the patient and offer review or second opinion when disagreement persists.
Recognise possible last days through progressive bedbound weakness, reduced interaction, intake and urine, impaired swallowing, mottling and changing breathing, while checking reversible causes proportionately.
Review every medicine: continue symptom benefit, stop non-beneficial prevention and convert essential treatment to subcutaneous, buccal, rectal or transdermal route when swallowing fails.
Prescribe individual anticipatory medicines for pain and breathlessness, nausea, agitation and respiratory secretions with doses adjusted to current opioid, renal, liver, frailty and previous response.
A continuous subcutaneous infusion is a reliable route for stable 24-hour requirements when swallowing fails; it is not inherently a higher dose or evidence that death is being hastened.
Clinically assisted hydration is an individual therapeutic trial when thirst, delirium or dehydration might improve; review benefit and stop for oedema, secretion, discomfort or no response.
Explain expected changes, provide mouth and pressure care, enable meaningful contact and give families a number to call, practical after-death information and bereavement support.

02AetiologyUnderlying causes, associations and risk factors, with why each one matters.

Progressive treatment-resistant cancer

Cancer may advance despite available therapy until burdens outweigh likely benefit, creating a need to redefine goals from tumour control toward comfort and time.

Declining physiological reserve

Frailty, cachexia, organ failure, recurrent emergency and worsening performance reduce the chance that intensive intervention restores an acceptable level of function.

Future loss of decision capacity

Brain disease, delirium, sedation and terminal decline can remove the ability to decide, making earlier values, attorney and refusal documentation clinically important.

Preference-sensitive treatment trade-offs

People value survival, independence, consciousness, place, family roles and treatment burden differently, so the same medical prognosis can support different informed choices.

03PathophysiologyThe causal sequence from the underlying abnormality to symptoms and harm.

1
Illness trajectories are uncertain
Cancer decline can be gradual, episodic or sudden; prognostic ranges and functional trend are more honest and useful than a single precise survival date.
2
Dying reduces intake and organ clearance
Reduced consciousness, swallowing, gut function, renal perfusion and hepatic metabolism alter medicine need and route and make accumulation more likely.
3
Delirium arises from multiple insults
Inflammation, organ failure, medicines, urinary retention, constipation, dehydration and brain disease disturb attention and cognition, often fluctuating across hours.
4
Breathing pattern changes naturally
Irregular respiration, pauses, upper-airway secretion and reduced oxygen use occur as brainstem and muscular function decline and do not always indicate suffering.
5
Communication changes care delivered
Clear shared records and anticipatory plans allow teams to honour goals, while absent information defaults crises toward burdensome intervention or undertreatment.

04Clinical features and red flagsSymptoms, examination findings, patterns of presentation and time-critical warnings.

Planning trigger

Progression, repeated admission, treatment failure, worsening performance or the surprise question becoming negative should prompt an offered future-care conversation.

Capacity preserved

The person understands, retains, uses or weighs and communicates the relevant choice after support, even when their decision differs from clinical advice.

Delirium threatening capacity

Fluctuating attention, sleep reversal, disorganised thinking, hallucination or altered arousal needs cause assessment and a time- and decision-specific capacity review.

Likely last days

Increasing bedbound weakness, reduced intake and urine, impaired swallowing, drowsiness, peripheral cooling and changing breathing suggest dying after proportionate reversible-cause review.

Uncontrolled terminal symptomRed flag

Repeated rescue need, grimacing, tachypnoea, panic, agitation, vomiting or distressing secretion requires prompt reassessment of cause, dose, route and infusion.

Catastrophic event riskRed flag

Sentinel bleed, central airway tumour, major vessel erosion or recurrent seizure requires an anticipatory stay-with-patient crisis plan and immediately available rescue.

Red flags requiring action

Sudden deterioration must be assessed for reversible sepsis, bleeding, hypercalcaemia, obstruction, thrombosis, opioid toxicity or treatment complication before it is labelled dying.
A patient with capacity who refuses treatment must not be overridden because clinicians or relatives disagree; confirm understanding, voluntariness and the exact scope of refusal.
New fluctuating attention, hallucination or disorganised thinking suggests delirium and requires pain, urine, bowel, medicine, infection and metabolic assessment.
A DNACPR decision applies to cardiopulmonary resuscitation only and must never be used as shorthand for no antibiotics, fluids, transfusion, oxygen or hospital review.
Uncontrolled pain, breathlessness, agitation, nausea, secretion or repeated need for rescue medicine requires same-day palliative review and a reliable route.
Catastrophic haemorrhage or airway risk needs an anticipatory crisis plan, medicines and equipment available before the event whenever foreseeable.
Family conflict, concern about coercion or safeguarding, or uncertainty over attorney authority requires senior, legal, ethics or safeguarding support rather than informal compromise.
A potentially valid advance decision refusing life-sustaining treatment must be located, verified for applicability and followed when the person lacks capacity.

05InvestigationsWhat to request, why it matters and how to interpret it.

Investigation order

Read from the initial assessment onwards. Tests may run in parallel in urgent care; first-line, preferred, confirmatory, definitive and gold-standard labels appear only when the chapter explicitly states them.

01
First-line goals and understanding conversationFirst stepFirst line
Why
Establish what the person knows, values, fears, hopes to preserve and wants family and clinicians to decide if illness worsens.
Interpretation and limitations
Use open questions, uncertainty ranges and teach-back; silence or reluctance means revisit respectfully, not presume a wish for every intervention.
02
Decision-specific capacity assessment
Why
Determine whether the person can understand, retain, use or weigh and communicate information for the current choice after support.
Interpretation and limitations
Do not infer incapacity from age, diagnosis or an unwise choice; treat delirium, use interpreter or communication aids and document reasoning and timing.
03
Legal and decision-document verification
Why
Locate advance decision, advance statement, lasting-power-of-attorney registration, DNACPR and ReSPECT or treatment-escalation record and confirm scope.
Interpretation and limitations
Check validity, applicability and attorney powers; a relative without legal authority still contributes important best-interests evidence but does not automatically decide.
04
Proportionate reversible-cause assessment
Why
Identify pain, retention, impaction, sepsis, bleeding, metabolic disturbance and medicine toxicity that could improve comfort or achieve an agreed goal.
Interpretation and limitations
Select bedside examination and tests only when results will change care; last-days recognition does not require indiscriminate bloods or imaging, nor does it forbid useful treatment.
05
Symptom and route review
Why
Assess pain, breathlessness, nausea, agitation, secretion, swallowing, current opioid, renal and liver function and prior rescue response.
Interpretation and limitations
Distinguish untreated symptom from sedation and accumulation; calculate a continuous infusion from actual effective 24-hour need rather than a standard terminal dose.
06
Hydration trial assessment
Why
Decide whether clinically assisted hydration may relieve a specific symptom and whether oral support, secretion, oedema and line burden alter benefit.
Interpretation and limitations
Set a time-limited goal and monitor thirst, delirium, urine, oedema, ascites, lung secretion and comfort; stop when burden exceeds benefit.

06Differential diagnosisRealistic alternatives and the features that help distinguish them.

Reversible acute illness

Sepsis, hypercalcaemia, urinary retention, constipation, bleeding, dehydration, opioid toxicity and adrenal crisis can mimic terminal decline and may be treatable within goals.

Delirium versus autonomous refusal

Fluctuating attention and inability to retain or weigh information differ from a capacitous, consistent decision to stop treatment, even if relatives disagree.

Depression or demoralisation

Persistent low mood, anhedonia, hopelessness and suicidal thinking require assessment and support, while understandable sadness does not by itself remove capacity.

Medication toxicity

Opioid, benzodiazepine, anticholinergic, gabapentinoid and renal metabolite accumulation can cause somnolence, hallucination or myoclonus and may improve after rationalisation.

Spiritual or existential distress

Fear, guilt, meaning, faith, legacy and relationship concerns can present as agitation or requests to hasten death and require sensitive multidisciplinary exploration.

07ManagementImmediate care, first-line treatment, alternatives and escalation.

01Advance planningBuild a portable values-and-decision recordFirst stepThe person is living with advanced cancer and willing to discuss future care.

1PreferredAsk permission, explore understanding, values, unacceptable outcomes, preferred people and place and explain prognosis as a range with uncertainty.
2Offer advance statement, attorney, advance-decision and emergency-care-plan information in accessible language without making completion a condition of care.
3Document and share the agreed record with consent across oncology, primary, community, ambulance and palliative teams and review after major clinical change.

02Treatment decisionCombine capacity, evidence and valuesA major anticancer, hospital, resuscitation or life-sustaining treatment choice is required.

1Support decision-specific capacity and explain likely benefit, burden, alternatives and no-treatment outcome using absolute and functional terms.
2If capacity is present, respect informed refusal; if absent, follow a valid applicable advance decision or consult the authorised attorney and make a documented best-interests decision.
3EscalationRecord CPR separately from broader treatment escalation and seek senior review, mediation, second opinion or legal advice when disagreement remains urgent or material.

03Last daysSimplify treatment and secure symptom routesThe multidisciplinary team recognises that the person may be entering the last days of life.

1Explain uncertainty, review proportionate reversible causes and ask the person and family what matters now, including place, contact, faith and practical concerns.
2Stop non-beneficial preventive medicines, continue comfort treatment and prescribe individual subcutaneous rescue for pain, breathlessness, nausea, agitation and secretion with infusion when repeated need is stable.
3Provide mouth, skin, bladder, bowel and pressure care, review hydration as a therapeutic trial and reassess symptoms and family understanding at least daily and after every change.

04Catastrophic eventStay, relieve and avoid chaotic interventionA foreseeable or actual major haemorrhage, airway obstruction, terminal seizure or overwhelming distress occurs.

1Call for help, stay with the patient, use calm explanation, dark towels for bleeding and simple positioning and airway comfort while agreed ceilings remain visible.
2Give the prepared rapid-route anxiolytic, anticonvulsant, opioid or secretion treatment when time and physiology allow, without delaying presence for complex observations.
3Support family immediately, document events and medicines, notify the responsible team and provide debrief and bereavement contact after death or stabilisation.

Key medicines and prescribing safety3 treatments · regimens, roles and cautions

Relieves cancer pain and can reduce distressing breathlessness when non-drug measures and treatment of reversible causes are insufficient.

Subcutaneous morphine for pain or breathlessness

In an opioid-naive adult in the last days, give morphine 2.5 to 5 mg subcutaneously every 2 to 4 hours as needed; derive any 24-hour infusion from response and prior total exposure.

Start lower in frailty and obtain specialist advice in severe renal impairment; monitor sedation, respiratory pattern, myoclonus and rescue need and do not use oxygen as a substitute when saturation is normal.

Treats severe anxiety, terminal agitation and seizure when a rapid non-oral benzodiazepine is appropriate and proportionate.

Subcutaneous midazolam for terminal agitation

Give midazolam 2.5 mg subcutaneously as needed, often hourly under the local last-days protocol, and use a 24-hour infusion only after assessing effective rescue requirement and reversible causes.

Exclude pain, retention, impaction and medicine toxicity; monitor excessive sedation and paradoxical agitation and reconcile opioid, renal and respiratory risk with the intended comfort goal.

Reduces new upper-airway secretion when repositioning and explanation are insufficient and the sound is distressing to patient or family.

Glycopyrronium for respiratory secretion

Give glycopyrronium 200 micrograms subcutaneously every 4 hours as needed, up to 1.2 mg over 24 hours by continuous infusion under the local protocol when repeated doses help.

It does not remove existing fluid and may cause dry mouth, urinary retention and confusion; explain that noisy breathing does not necessarily mean the patient is choking.

08ComplicationsImportant consequences, why they occur and why they matter clinically.

Non-beneficial crisis intervention

Absent planning can lead to repeated ambulance transfer, intensive care, resuscitation attempts or invasive tests that cannot achieve the patient’s stated goals.

Undertreatment from DNACPR misinterpretation

Treatable pain, infection, fracture or obstruction may be ignored when a resuscitation decision is wrongly applied to all clinical care.

Uncontrolled terminal symptoms

Poor anticipatory prescribing, route failure and fragmented responsibility can leave pain, breathlessness, agitation, nausea and secretion untreated during rapid decline.

Conflict and moral injury

Unclear information, unrealistic promises and excluded families can produce disagreement, complaints, clinician distress and complicated grief around the final days.

Medication and hydration harm

Continuing preventive tablets, excessive parenteral fluid or sedative stacking can cause aspiration, oedema, secretion, delirium and loss of interaction without meaningful benefit.

09Monitoring and follow-upTreatment response, safety checks and longer-term review.

Review advance-care records after progression, admission, treatment decision, capacity change or patient request and share updates with consent across relevant services.
During serious illness, reassess capacity when the decision changes or delirium fluctuates; do not treat an old assessment as permanent.
In the last days, review pain, breathlessness, nausea, agitation, secretion, swallowing, urine, bowel, skin and mouth at least daily and after rescue use.
Record every rescue dose and response and convert to a continuous infusion only when repeated effective need and route failure justify it.
During assisted hydration, track the agreed symptom outcome plus oedema, chest secretion, ascites, cannula burden and urine and stop when no benefit appears.
Check family understanding, exhaustion, safeguarding, cultural and spiritual needs and give a named 24-hour contact and practical plan for expected changes.
After death, follow verification, certification, coroner, device and infection requirements and offer immediate information, property care and bereavement support.

10Special situationsVariants, exceptions and circumstances that change the usual approach.

Planning is a conversation before a form

A form without values becomes brittle in an unforeseen crisis, while a clear values record helps clinicians interpret several possible treatments.

Capacity can fluctuate

A person may decide one issue in the morning and lack capacity for a more complex decision during evening delirium, making timing and support central.

DNACPR is a narrow decision

It prevents an inappropriate CPR attempt after arrest but leaves every other treatment to its own benefit, burden and preference assessment.

A syringe pump is only a route

It delivers the calculated 24-hour requirement steadily when swallowing fails and neither signals nor causes dying by itself.

Noisy secretion is not always distress

The sound often troubles relatives more than an unconscious patient, so explanation and repositioning may provide more benefit than escalating anticholinergic.

Uncertainty should be spoken

Saying someone may be dying while a reversible cause is assessed allows preparation without pretending certainty or postponing important contact.

11Common pitfallsFrequent interpretation and management errors.

01
Waiting for the final days before offering any future-care conversation.
02
Treating advance care planning as compulsory paperwork or a one-time event.
03
Inferring incapacity from an unwise decision, age, disability or disagreement.
04
Assuming the nearest relative is automatically a legal decision-maker.
05
Using DNACPR to deny assessment or beneficial non-CPR treatment.
06
Labelling sudden decline dying without considering sepsis, retention, constipation, bleeding or medicine toxicity.
07
Starting a standard syringe-pump mixture without calculating current exposure and symptom mechanism.
08
Giving routine parenteral fluid without a symptom goal and stop rule.
09
Explaining respiratory secretion as choking and escalating family fear.
10
Forgetting communication, spiritual care, practical after-death information and bereavement support.