Synopsis
Elicit and revisit preferences for care and death, distinguish aspiration from a guaranteed outcome, and coordinate people, equipment, medicines, funding, transport and contingency support so that the chosen setting remains safe and achievable.
- Ask separately where the person would prefer routine care, crisis care and death; these answers may differ and can change over time.
- Preference is an important goal, not a promise. Explain uncertainty and the practical conditions required without making the person feel responsible for service limitations.
- First-line feasibility assessment covers symptom complexity, mobility, cognition, medication route, equipment, overnight help, caregiver willingness, housing and emergency access.
- Possible settings include home, care home, hospice and hospital; the best option is the one that can meet current needs and values with least avoidable burden.
- The gold-standard plan links preference to a named coordinator, 24-hour contact, anticipatory treatment, equipment, funding, transport and clear transfer triggers.
- Never describe a family member as the care package. Assess what they freely can and want to do, teach practical tasks and provide respite or formal care.
- Fast-track NHS continuing healthcare processes may help arrange an urgent package for a rapidly deteriorating person, but local coordination should begin while eligibility is processed.
- Share the current care and emergency plan across primary, community, ambulance, hospice and hospital teams with appropriate consent.
- When circumstances change, reframe relocation as adapting care to the person's present priorities rather than failing to achieve a previous preference.
Key red flags
A stated wish for home does not authorise discharge when essential care, oxygen, equipment, medicines or a safe receiving person are unavailable.
Caregiver unwillingness, exhaustion, illness or risk of violence requires private assessment and can override assumptions that family will provide care.
Rapidly escalating pain, breathlessness, agitation, bleeding or seizure risk requires an explicit same-day response and crisis route.
A decision to avoid hospital must not prevent treatment of reversible suffering that can be delivered in the preferred setting or a negotiated alternative.
Coercion about residence, financial interest, neglect or restriction of movement raises safeguarding and capacity concerns.
Transfer near death may cause delay, distress or death in transit; reassess whether moving now can still achieve the person's priority.
The supporting person's exhaustion, fear, illness or withdrawal of consent can make continued home care unsafe despite the patient's preference.
Investigation priorities
Ask preferred settings for current care, future crisis and death and understand which valued features drive each preference.
Management branches
The person identifies a preferred place for ongoing care or death.
- Explore what the setting means, assess capacity and record separate preferences for stable care, crisis and dying with any conditions attached.
- Map clinical, functional, social, housing, equipment, funding and caregiver requirements and assign each gap to a responsible service.
- Confirm delivery and emergency contacts, share the plan across relevant teams and set a review point based on trajectory rather than a routine distant date.
A deteriorating inpatient wants transfer and delay may remove the opportunity to reach the preferred setting.
- Obtain senior assessment of trajectory and transport risk, clarify the current goal and discuss honestly the possibility of deterioration or death during transfer.
- Activate urgent funding and community or hospice coordination, secure essential medicines, equipment, care hours and a named accepting professional.
- Complete a bedside readiness check, send treatment and emergency records, give family a 24-hour contact and confirm arrival handover rather than assuming completion.