01Purpose and principlesWhat the treatment does and how it fits into care.
Prepare by understanding diagnoses, reversibility, prognosis, function and available options, but begin with the person's perspective. Ask what a good day looks like, what they hope treatment will allow, which losses they fear and who they want involved. Use communication support and offer time when the decision permits it. Goals may be multiple and can conflict.
Explain that there is a choice and describe reasonable options, including continuing current care or focusing on symptoms. Present absolute benefit and harm over a relevant timeframe with natural frequencies and acknowledge uncertainty. Avoid framing one option as doing everything and another as giving up. Check understanding by asking the person to explain the decision in their own words.
Translate broad values into treatment-specific decisions. A priority to remain at home may favour community antibiotics but not necessarily refusal of hospital care for a reversible fracture. A wish to avoid dependency may support a time-limited ICU trial with agreed neurological or functional outcomes. Record what the person values and how it changes the recommendation.
Assess capacity for the actual decision: can the person understand, retain, use or weigh the relevant information and communicate a choice after support? Capacity may fluctuate with delirium and differs between a simple blood test and complex surgery. Document the information and support provided, not only the conclusion.
If capacity is absent, check an applicable advance decision, health-and-welfare lasting power of attorney or court deputy. Consult people who know the person's values; they inform best interests unless legally authorised to decide. Balance wishes, beliefs, clinical benefit, burden and less restrictive options. Family distress matters but does not replace the person's interests.
Discuss CPR separately and honestly. Explain likely outcome in the person's clinical context and that DNACPR means CPR will not be attempted after cardiac or respiratory arrest; it does not limit treatment before arrest. ReSPECT can integrate emergency options and priorities, but recommendations must be accessible, specific and reviewed rather than copied indefinitely.
For uncertain benefit, define a time-limited trial: intervention, duration, measurable physiological and person-centred outcomes, unacceptable burdens and review participants. If the agreed goals are not achieved, change emphasis rather than allowing invasive treatment to continue by inertia. Always continue comfort, dignity and communication.
Anticipatory planning includes symptom medicines where clinically appropriate, who to call, likely complications, place-of-care preferences, carer capacity and what warrants hospital transfer. Do not promise a preferred place that services cannot support. Link the plan to community, ambulance and out-of-hours records and ensure carers understand the boundaries.
Review decisions after new diagnosis, functional recovery or decline, a change of mind, transfer of setting or expiry of the clinical assumptions. A capacitous person can change or refuse prior preferences. Record date, participants, capacity, options, material risks, goals, decision, uncertainty, owner and review trigger in plain language.
Documentation should separate a person's legally binding refusal, an advance statement of wishes, a clinician's recommendation and a current shared decision. Record the exact treatment and circumstances to which each applies. Upload or code the plan where urgent services can find it, but retain the signed or source document and confirm version control. An inaccessible or ambiguous plan can be more dangerous than no form because clinicians may infer limits the person never chose.
Disagreement deserves process rather than delay or coercion. Clarify whether participants differ about facts, prognosis, values or legal authority; repeat explanation with communication support and seek senior second opinion, advocacy, mediation, ethics or legal advice according to urgency. Continue immediately necessary care and symptom relief while conflict is addressed, and protect the person from feeling that relationships or access to care depend on choosing the professional recommendation.
Key points
- Goals are outcomes such as comfort, cognition, mobility, longevity, independence, staying home or attending an event—not merely treatment names.
- First-line shared decision-making creates choice awareness, discusses reasonable options including no change, and supports preference after material benefits, harms and uncertainty.
- Ask what the person understands, what matters, what burden is unacceptable and what trade-off they would accept; avoid asking only whether they want everything done.
- Capacity is presumed, supported, decision- and time-specific. An unwise choice does not prove incapacity.
- When capacity is absent, identify any valid advance decision and health-and-welfare attorney, consult prior wishes and those close, and decide best interests least restrictively.
- Advance care planning may record values, preferred place, emergency contacts and treatment preferences; an advance statement informs but does not itself refuse treatment.
- A valid applicable advance decision to refuse treatment is legally binding; refusal of life-sustaining treatment has additional formal requirements.
- DNACPR concerns CPR only. ReSPECT records broader emergency-care recommendations but does not replace clinical judgement, consent or review.
- Offer a time-limited treatment trial when benefit is uncertain and define duration, outcomes, burdens and what happens if the goals are not achieved.
- Communicate decisions across settings, give the person a copy where appropriate and review after clinical, functional or preference change.
02Indications, selection and cautionsWho may benefit, who needs urgent treatment and important alternatives.
The person names a valued ability or experience that can be used to compare treatment options.
The person understands options but remains uncertain because benefits and burdens affect competing values.
Delirium or fatigue changes the ability to weigh information, creating a need for support, timing and reassessment.
A relative is asked to decide despite no verified attorney authority and no documented best-interests process.
Staff interpret DNACPR as a general treatment ceiling and risk withholding reversible-illness care.
Preferences are documented but unavailable to ambulance, out-of-hours or community teams and unsupported at home.
03Assessment before treatmentTests and checks that guide safe selection.
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
Understanding and priority conversationFirst step - Why
- Define the decision and desired outcomes.
- Interpretation and limitations
- Ask existing knowledge, hopes, fears, unacceptable states, important people and preferred role in making the decision.
- 02
Clinical benefit-burden assessment - Why
- Make the options medically realistic.
- Interpretation and limitations
- Integrate reversibility, prognosis, baseline function, frailty, likely absolute benefit, harms, time horizon and alternatives.
- 03
Decision-specific capacity assessment - Why
- Establish lawful participation for this choice.
- Interpretation and limitations
- Support communication and document understanding, retention, use or weighing and communication; repeat if a reversible impairment changes.
- 04
Prior-wishes and authority check - Why
- Identify legally and ethically relevant evidence.
- Interpretation and limitations
- Search records for advance decisions, advance statements, ReSPECT, attorneys or deputies and confirm scope, validity and applicability.
- 05
Carer and service feasibilityPreferred - Why
- Test whether the preferred plan can operate.
- Interpretation and limitations
- Assess carer willingness, home support, medicines, equipment, emergency access and community and out-of-hours availability.
- 06
Conflict and safeguarding review - Why
- Protect voluntariness and resolve disagreement.
- Interpretation and limitations
- Offer private discussion, advocacy, senior review, mediation, ethics or legal advice according to urgency and concern.
04Treatment approachPreparation, options, escalation and aftercare.
01First-line shared decisionCreate choice, compare options, reach or defer a decisionFirst stepFirst lineMore than one reasonable care option exists.+
- 1PreferredExplain the decision and invite the person's goals, preferred involvement and chosen supporters.
- 2Discuss reasonable options, no change, absolute benefits, harms, burden and uncertainty in accessible language.
- 3Reach a preference or allow time, then document rationale, actions, contingency and review while checking understanding.
02Absent-capacity decisionRespect prior wishes and determine best interestsThe person cannot make the specific decision despite support.+
- 1Treat reversible impairment and verify any applicable advance refusal, attorney or deputy authority.
- 2Consult wishes, beliefs and those close, weigh clinical benefit and burden and identify less restrictive alternatives.
- 3Document the best-interests reasoning, disagreement process, implementation and point for capacity reassessment.
03Emergency planTurn priorities into usable recommendationsEscalationFuture deterioration is foreseeable or escalation decisions may be needed quickly.+
- 1Discuss likely emergencies, CPR separately, hospital transfer, acceptable treatment trials and comfort needs.
- 2Record specific recommendations and triggers in ReSPECT or local systems and confirm carer and service feasibility.
- 3Share the plan across settings and review after health, function, capacity or preference changes.
04Time-limited trialManage uncertain benefit transparentlyA burdensome treatment might achieve a valued outcome but probability is unclear.+
- 1Agree intervention, duration and measurable physiological and person-centred markers before starting where possible.
- 2Provide full supportive care and update the person or representative during the trial.
- 3At the review point continue, modify or stop according to agreed goals and newly available evidence.
05Complications, monitoring and follow-upAdverse effects, response and longer-term review.
- Review whether the clinical assumptions, capacity, preferences and available support remain the same after every major change or transition.
- Check that emergency recommendations are visible in primary, community, ambulance and hospital records and that the person holds an accessible copy when appropriate.
- Audit that DNACPR decisions do not lead to reduced ward observation, symptom relief or treatment of reversible illness.
- For time-limited trials, record the agreed outcome measures and review on time rather than allowing treatment to continue by default.
- Ask carers whether they understand and can deliver the plan and provide a clear contact when symptoms, uncertainty or care capacity changes.
06Special situationsVariants, exceptions and circumstances that change the usual approach.
Goals are not procedures
Staying lucid for family may guide ventilation, sedation and place-of-care choices more clearly than asking about intensive care in isolation.
Capacity belongs to a decision
A person may decide where to live but not understand a complex financial or surgical choice at the same time.
DNACPR has one scope
It concerns CPR after arrest and says nothing automatically about treatment before arrest.
Best interests are personal
The decision integrates the person's values and wishes, not merely what professionals or relatives prefer.
Trials need stopping rules
Uncertain treatment becomes ethically clearer when success, burden, duration and non-response are agreed beforehand.
07Common pitfallsFrequent interpretation and management errors.
- 01
Asking whether the patient wants everything done instead of discussing outcomes and material trade-offs.
- 02
Treating next of kin as a legally authorised decision-maker without checking attorney status.
- 03
Using DNACPR as shorthand for no escalation, no hospital transfer or comfort care only.
- 04
Declaring incapacity before treating delirium or correcting communication barriers.
- 05
Recording a preferred place of care without confirming services and carer ability.
- 06
Starting a burdensome treatment trial without goals, duration or a planned review.