Importance of respecting the wishes of patients, families, and carers

The principle

Respecting a patient's expressed wishes - about treatment, place of care/death, and how they want to be cared for - is a foundational ethical obligation in palliative care, requiring active elicitation and consistent honouring of those wishes even as the clinical situation evolves
Patient preferences (particularly around place of death) are frequently not achieved in practice - a substantial gap exists between where patients say they would prefer to die (commonly home) and where death actually occurs, reflecting systemic and communication barriers rather than a genuine inability to honour the wish in many cases

Wishes can be explicit (directly stated by the patient, ideally documented) or need to be inferred (from known values, prior statements, cultural/religious background) when the patient can no longer state them directly - the former is always preferred where available, given the risk of inaccurate inference

Wishes should be actively elicited early, not assumed - clinicians and families can both hold inaccurate assumptions about what a patient would want, particularly regarding place of death and treatment intensity, if the conversation has not explicitly occurred
Wishes may change over time as illness progresses - a preference stated early in an illness should be revisited, not treated as fixed and unchangeable, since patients' priorities commonly evolve as their situation changes

Proactive advance care planning conversations, well before a crisis, increase the likelihood that a patient's actual wishes (rather than a default pathway) determine their care
Document and communicate wishes clearly across the care team and across care transitions, since a wish known to one clinician but not documented/communicated is easily lost at a transition point (e.g. hospital to community, one team to another)

Preferred place of death (a specifically tracked, frequently unmet preference), advance care planning, substitute decision-making when wishes are not known
The gap between stated preference (often home) and actual place of death reflects real, addressable systemic and communication barriers - proactively eliciting and planning around a patient's wishes substantially improves the likelihood those wishes are actually honoured

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