Communication, shared decisions and advance/future care planning

Advance or future care planning is a voluntary process of thinking and talking about what matters now and what may matter if health changes. NHS England Universal Principles, NHS Wales Future Care Planning and Northern Ireland's policy all emphasise person-centred reflection rather than form completion. The terminology differs, but the underlying aim is to support informed, timely, realistic planning.

Good conversations explore the person's priorities, fears, acceptable outcomes, important relationships, preferred involvement of others, and how they would want future decisions approached if they could not participate. The discussion should be paced around what the person wants to know and is ready to discuss. A person may decline some topics or revisit them later.

A recurring safety problem is treating every future-care record as though it has the same legal effect. Values-based statements, advance decisions to refuse treatment, powers of attorney or other proxy arrangements, and emergency care treatment recommendations are different instruments. Their legal status depends on jurisdiction and on whether statutory requirements are met.

A generic planning form should therefore never be taught as automatically binding. The safer approach is to label what each record is: preference, legally binding refusal where applicable, proxy authority, or clinical recommendation. This is especially important when information crosses organisational or national boundaries.

Preferences can change after a new diagnosis, treatment experience or shift in priorities. NICE NG142 recommends regular review of needs and advance-care plans at transition points and when goals change. The record should make the current version clear, and older versions should not continue to drive care unnoticed.

Practical questions matter: Where is the plan stored? Who has a copy? Can urgent and out-of-hours services see it? Who updates it after a change? Digital availability can determine whether a good conversation actually influences care. NHS Wales has emphasised making future-care documents easier to access across clinical systems.

Families and others close to the person often hold valuable knowledge about values, beliefs and preferences. With the person's agreement they can be included in planning and may help the patient feel supported. Confidential information should not, however, be disclosed simply because someone is a relative.

Neither participation in planning nor being labelled "next of kin" automatically creates legal authority to make adult treatment decisions. If future substitute decision-making authority is relevant, the specific legal arrangement and its scope must be identified under the applicable national framework.

England uses the NHS England Universal Principles for Advance Care Planning alongside the Mental Capacity Act 2005 for legal decisions when capacity is lacking. Wales increasingly uses Future Care Planning as its national framing. Scotland uses its own incapacity and power-of-attorney framework. Northern Ireland's 2022 policy is broad and explicitly describes advance care planning as relevant to all adults, while local electronic documentation is evolving.

Learners should therefore understand the common purpose of planning while avoiding the assumption that a form or legal instrument from one nation has identical status everywhere else.

| Record/process | Function |

| --- | --- |

| Values/preferences statement | Communicates what matters; not automatically a legally binding refusal. |

| Advance refusal/decision | May have legal effect if valid, applicable and compliant with the relevant law. |

| Proxy appointment | Gives authority only within the legal scope of the appointment. |

| Emergency care/treatment plan | Records personalised clinical recommendations for an emergency; not itself a universal consent form. |

| Question | Why it matters |

| --- | --- |

| Where is the current plan stored? | Emergency teams need to find it. |

| Who has a copy? | Patient, family and services may hold different versions. |

| How are changes communicated? | Old plans can persist across settings. |

| Is the legal status clear? | Preferences, refusals and recommendations have different effects. |

1. A values-based future-care document is later treated as a binding refusal of all hospital treatment. The team should distinguish preferences from legally binding refusals.

2. A person changes their views after a new diagnosis, but an older emergency record remains visible to out-of-hours clinicians. Version control must be addressed.

3. Family members request detailed future-care information that the patient asked clinicians not to share. Confidentiality and the patient's wishes still apply.

• Ask permission to discuss future care and pace the conversation around the person.
• Explore values, acceptable outcomes, fears and who should be involved.
• Label the legal/clinical status of each document accurately.
• Record where the current plan is stored and how it will be shared.
• Review the plan when circumstances or priorities change.
• Do not equate family involvement with automatic legal authority.