What advance care planning is — and what the evidence says
7 min read · Written by an HCPC-registered Occupational Therapist
Advance care planning is a voluntary process of thinking, talking and recording what matters to you, so that the people around you understand your wishes if you become less able to express them. It is not one form. It is a conversation that produces a record.
The evidence in brief
- Advance care planning is voluntary and can be revisited at any time
- NHS England's Universal Principles frame it as person-centred and ongoing, not a single event
- A randomised trial in hospitalised older adults found structured planning improved the likelihood that end-of-life wishes were known and followed, and reduced family anxiety and depression
- Recording preferences is different from appointing a decision-maker — most people benefit from both
What it actually covers
Advance care planning spans several distinct things that are often confused with each other. Some are legal instruments; others are records of preference that inform, but do not bind, decision-makers.
- Statements of wishes and preferences — what matters to you, your routines, values and priorities (not legally binding, but must be taken into account)
- Advance decision to refuse treatment (ADRT) — legally binding refusal of specified treatment, under the Mental Capacity Act 2005
- Lasting Power of Attorney — appointing someone to decide for you if you lose capacity
- Emergency care and treatment plans, such as the ReSPECT process, used by clinicians in urgent situations
What the research shows
The most cited controlled evidence is Detering and colleagues' randomised trial in the BMJ (2010). Older inpatients were randomised to usual care or facilitated advance care planning. In the intervention group, end-of-life wishes were much more likely to be known and respected, family members reported significantly less anxiety, depression and post-traumatic stress after bereavement, and family satisfaction was higher.
Subsequent reviews are more nuanced: planning reliably improves concordance between wishes and care received, and reduces decision-making burden on families, while effects on hospital admissions and costs vary by population and how the planning is done. The consistent finding is that facilitated, structured conversations outperform handing someone a form.
Why the 'facilitated' part matters
The trials that show benefit used trained facilitators working through structured conversations over time — not a document completed alone. The Future You Life Profile uses needs-led Occupational Therapy conversations and a professionally written record: we work with you until your needs and wishes are clearly communicated within an agreed scope, rather than specifying a fixed number of sessions. Research on related approaches does not establish the effectiveness of this specific service.
Where a Life Profile sits
Legal documents record who may decide and what must not be done. A Life Profile records what those decision-makers should know before they act: your history, identity, routines, communication, comfort and preferences. The two are complementary, and neither replaces the other.
Sources
Do it before you need it.
The Future You® Life Profile is an Occupational Therapist-led picture of the person behind the paperwork — who you are, what matters to you and what you would want others to know. It complements, and does not replace, an LPA, advance decision, care plan or medical record.
General information for England and Wales. Not legal advice, and not a substitute for an individual clinical assessment.