Preferred place of care and death

01Purpose and principlesWhat the treatment does and how it fits into care.

Place is often a proxy for deeper values: familiarity, privacy, family presence, symptom expertise, independence, spiritual practice or freedom from emergency transfer. Asking only 'home or hospice?' misses these reasons. Explore what the preferred setting represents and which feature is non-negotiable. A person who prioritises family access may accept several locations if that access is protected.

Preferences vary by phase. Someone may want outpatient or home care while stable, hospice admission for difficult symptoms and no hospital transfer during expected dying. Others feel safest in hospital. Avoid ranking settings morally. The task is to provide informed choice, recognise inequalities and develop the support needed for the person's own priorities.

Feasibility is dynamic. Stairs, bathroom access, continence, cognitive change, overnight symptoms, controlled-drug supply, equipment delivery, community staffing and caregiver health can alter within days. An assessment should specify what support is needed at each time, what is already confirmed and what gap remains. A desired discharge date is not evidence that the receiving system is ready.

Contingency planning preserves choice. Agree who can be called at any hour, what rescue treatment is available, which symptoms can be managed locally and what would justify transfer. If a move becomes necessary, give the receiving team the current medication chart, capacity and communication needs, emergency-care recommendations and family contacts. Continue to review place after admission because return may become possible after symptom stabilisation.

After death, the chosen setting affects verification, certification, expected-death procedures, care of the body and family support. Prepare caregivers for expected changes and whom to contact without turning the home into a clinical ward. Ask about urgent ritual or burial needs early, while explaining that coroner, medical-device, infection and legal duties may sometimes constrain timing.

Coordination should include medicines governance. Confirm who will prescribe, dispense, transport, store and administer urgent medicines, how unused controlled drugs will be returned and what happens if the oral route fails after hours. Community staff need a signed administration authority and patient-specific doses where required; a discharge summary stating only 'anticipatory medicines advised' does not make treatment available.

Key points

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.

02Indications, selection and cautionsWho may benefit, who needs urgent treatment and important alternatives.

Stable home preference

Symptoms are controllable, the person understands options, required support is confirmed and caregivers willingly accept their defined role.

Setting mismatch

Repeated emergency calls, medication delays, unsafe transfers or unmanaged night symptoms indicate that available resources do not match current need.

Hospice benefit

Complex symptom adjustment, respite, rehabilitation or end-of-life support may be better delivered by inpatient hospice while goals are clarified.

Hospital benefit

A reversible crisis requiring imaging, procedure, transfusion or high-dependency monitoring may justify admission when expected benefit accords with priorities.

Caregiver breakdownRed flag

The supporting person's exhaustion, fear, illness or withdrawal of consent can make continued home care unsafe despite the patient's preference.

Dying during transfer

Profound weakness, minimal responsiveness, peripheral shutdown and irregular breathing suggest that transport burden and risk require immediate senior review.

Red flags requiring action

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.

03Assessment before treatmentTests and checks that guide safe selection.

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 place-and-meaning conversationFirst stepFirst linePreferred
Why
Ask preferred settings for current care, future crisis and death and understand which valued features drive each preference.
Interpretation and limitations
Record the person's own reasons and level of certainty; a preference may be conditional on symptom control, family availability or avoiding particular interventions.
02
Clinical stability and trajectory review
Why
Assess symptoms, likely emergencies, performance, cognition, swallowing, continence, mobility and expected pace of change.
Interpretation and limitations
Rapid instability requires more intensive support and shorter review; uncertainty should produce contingency options rather than a falsely fixed destination.
03
Home and equipment assessment
Why
Determine access, bed and pressure needs, hoisting, oxygen safety, sanitation, medication storage, telephone coverage and ambulance entry.
Interpretation and limitations
A concrete environmental gap must have an owner and delivery time before transfer; assumptions based on an address are unsafe.
04
Caregiver capacity interview
Why
Explore willingness, health, sleep, employment, other dependants, confidence with tasks and need for respite or formal care.
Interpretation and limitations
Assess privately when useful and distinguish love from ability; declining a care task is not abandonment and should trigger service redesign.
05
Service and funding confirmation
Why
Verify community nursing, primary-care cover, specialist access, care hours, hospice availability, funding route and out-of-hours response.
Interpretation and limitations
A referral or application is not delivered support; name the accepting service, start time, contact route and fallback if it does not materialise.
06
Pre-transfer readiness check
Why
Confirm medicines, prescriptions, equipment, transport, documentation, receiving contact, food or heating and the patient's present fitness to move.
Interpretation and limitations
The benchmark is safe handover of care at the chosen time; delay or alternate placement may be necessary when a critical dependency remains absent.

04Treatment approachPreparation, options, escalation and aftercare.

01Preference planningConvert place preference into deliverable careFirst stepPreferredThe person identifies a preferred place for ongoing care or death.

1Explore what the setting means, assess capacity and record separate preferences for stable care, crisis and dying with any conditions attached.
2Map clinical, functional, social, housing, equipment, funding and caregiver requirements and assign each gap to a responsible service.
3Confirm delivery and emergency contacts, share the plan across relevant teams and set a review point based on trajectory rather than a routine distant date.

02Urgent dischargeCoordinate rapid transfer without unsafe shortcutsPreferredA deteriorating inpatient wants transfer and delay may remove the opportunity to reach the preferred setting.

1Obtain senior assessment of trajectory and transport risk, clarify the current goal and discuss honestly the possibility of deterioration or death during transfer.
2Activate urgent funding and community or hospice coordination, secure essential medicines, equipment, care hours and a named accepting professional.
3Complete a bedside readiness check, send treatment and emergency records, give family a 24-hour contact and confirm arrival handover rather than assuming completion.

03Plan failureReassess location while preserving core valuesPreferredSymptoms, caregiver capacity or service availability make the preferred setting unable to provide safe care.

1Relieve immediate distress and ask which element of the original preference matters most now, such as family presence, quiet or avoiding invasive intervention.
2Offer additional home support, short hospice admission, care-home input or hospital treatment with realistic benefits and burdens, involving the capable patient in the choice.
3Document the revised rationale, transfer safely if chosen and review whether return is possible after stabilisation; support carers without attributing blame.

04Expected deathPrepare the setting and familyPreferredThe team believes death may occur soon in the current preferred place.

1Ensure symptom medicines, non-oral route, nursing review and expected-death documentation are available and explain likely physical changes in accessible language.
2Confirm whom to call, what to do if death occurs, device and coroner considerations, and any cultural, spiritual or urgent funeral needs.
3After death, provide respectful care, practical information and bereavement contact while following local verification and certification processes.

05Complications, monitoring and follow-upAdverse effects, response and longer-term review.

Recheck preferred place after admission, functional step-change, new symptom, caregiver change or failure of community support.
Track whether promised care hours, equipment, prescriptions and specialist contacts are actually in place and usable.
Ask the patient and caregiver separately whether the arrangement remains acceptable and what feels unsafe or unsustainable.
Review rescue use, swallowing, mobility, continence and night-time events because these commonly change setting feasibility first.
Record every change across shared electronic and paper plans and tell the services likely to respond during crisis.
After an unplanned transfer, examine which dependency failed and repair it before considering return rather than treating admission as irreversible.

06Special situationsVariants, exceptions and circumstances that change the usual approach.

Place represents values

Understanding whether familiarity, symptom expertise, privacy or family access matters most allows alternative settings to preserve the true priority.

Preference can be conditional

A person may choose home only while pain is controlled or a partner can cope; documenting the condition prevents later conflict.

Home is not no treatment

Community antibiotics, transfusion, drainage, oxygen or hospital assessment may still fit a home-focused plan when benefit and logistics align.

Hospice supports transitions

Inpatient hospice can provide short symptom control, rehabilitation or caregiver respite and does not necessarily mean permanent admission.

A changed plan can succeed

Moving when needs exceed available support may protect dignity and relationships while still honouring the reasons behind the original preference.

Arrival completes discharge

Transfer is clinically complete only when the receiving professional knows the patient has arrived and assumes responsibility for the current plan.

07Common pitfallsFrequent interpretation and management errors.

01
Recording only a preferred place of death and ignoring where crisis care should occur.
02
Promising home death before assessing resources and illness trajectory.
03
Assuming relatives have agreed to provide personal or overnight care.
04
Counting a referral, funding request or equipment order as completed support.
05
Discharging before essential medicines and an accepting professional are confirmed.
06
Framing transfer to hospice or hospital as failure by the patient or family.
07
Letting a wish to avoid admission block useful treatment available in the community.
08
Forgetting expected-death procedures, cultural needs and family instructions until after death.