Key Facts

Advance care planning gives patients a voice in their future care, especially when they may lose the capacity to make or communicate decisions. It is a process, not a one-off event.

Epidemiology

• Only ~4% of the UK population have an ADRT
• ~10% have a registered health and welfare LPA
• ReSPECT forms now in use across most of England and Wales
• ACP is particularly important for: dementia, cancer, progressive neurological disease, frailty, COPD, heart failure

Aetiology

ACP is needed because:

• Many patients lose capacity before death (dementia, stroke, delirium, ICU admission)
• Without ACP, decisions are made by clinicians acting in patient's best interests (which may not align with patient's actual wishes)
• Reduces unwanted hospital admissions and interventions at end of life

Pathophysiology

Not applicable (ethical/legal framework rather than pathological process). However, ACP is underpinned by the Mental Capacity Act 2005 which provides the legal basis for advance decisions and proxy decision-making.

When to Discuss ACP

• At diagnosis of life-limiting illness
• When moving to care home
• After significant deterioration or hospital admission
• When Surprise Question answer is "No" (would not be surprised if died in 12 months)
• At patient's request
• During routine reviews for long-term conditions

Components of ACP

• Patient's values, beliefs, and preferences
• Understanding of their condition and prognosis
• Preferred place of care and death
• Specific treatment preferences (e.g. hospital admission, ICU, ventilation)
• What matters most to the patient
• Naming a spokesperson/proxy

Red Flags

• Patient expressing strong views about future treatment without documented plan
• Conflict between family members about patient's wishes
• Patient with progressive illness and no ACP in place
• Healthcare professional making decisions without exploring patient's wishes

Bedside

• Capacity assessment (see Capacity Assessment topic): does the patient have capacity to make this decision now?
• Review of existing documents (ADRT, LPA, ReSPECT)
• Discussion with patient about values, wishes, and preferences
• Discussion with family/carers (with patient's consent)

Bloods

• Not applicable

Imaging

• Not applicable

Special Tests

• Not applicable (ACP is a communication process, not a diagnostic process)

Non-pharmacological

• Initiate conversation: use open questions; explore what the patient understands about their condition
• Discuss: values, preferences, fears, goals of care, preferred place of death
• Document: in clinical records; create/update ADRT if requested; complete ReSPECT form
• Review regularly: ACP is a process; preferences may change over time
• Involve: family/carers (with consent), GP, specialist team, palliative care
• Support: written information, time to reflect, opportunity to revisit

Key Legal Documents

• Advance Decision to Refuse Treatment (ADRT):
  • Must be made when patient has capacity
  • Must specify the treatment being refused and circumstances
  • Must be written, signed, and witnessed if refusing life-sustaining treatment
  • Can be overridden by a more recent decision or if patient had capacity at the time
  • Cannot request treatment (only refuse it)
• Lasting Power of Attorney (LPA) for Health and Welfare:
  • Appoints a proxy (attorney) to make decisions when patient lacks capacity
  • Must be registered with the Office of the Public Guardian
  • Attorney must act in patient's best interests
  • Can include authority for life-sustaining treatment decisions
• ReSPECT form:
  • Recommended Summary Plan for Emergency Care and Treatment
  • Completed with patient (or those close to them if lacking capacity)
  • Includes CPR decision, clinical recommendations, patient preferences
  • Travels with the patient (home, ambulance, hospital)

Pharmacological

• Not applicable

Surgical/Interventional

• Not applicable

Referral Criteria

• Complex ACP discussions: palliative care specialist
• Disputed capacity: request formal capacity assessment
• Disagreement between family and clinical team: mediation, clinical ethics committee
• Legal queries about ADRT/LPA: Trust legal department

• ACP improves: concordance between patient wishes and actual care received
• Reduces: unwanted hospital admissions and interventions
• Increases: likelihood of dying in preferred place (associated with better family bereavement outcomes)
• Patients with documented ACP: more likely to receive appropriate level of care at end of life
• ACP does not shorten life; it ensures care aligns with patient's values

Comparison of ACP Documents

Mental Capacity Act 2005 — Key Principles