Quality statement 3: Advance care planning

Quality statement

People with dementia are given the opportunity to discuss advance care planning at diagnosis and at each health and social care review. [2010, updated 2019]

Rationale

As dementia is a progressive condition, it is important for people to be able to make decisions about their future care early on, before they find it difficult to communicate or they lack the capacity to do so. This is known as advance care planning. It is important that there are opportunities to review and change the plan as the dementia progresses and if the preferences or needs of the person change. Having an advance care plan ensures that the person with dementia can receive treatment and care according to their preferences, even when they can no longer express them.

Quality measures

Structure

Evidence of local arrangements to ensure that people with dementia and people involved in their care have early and ongoing opportunities to discuss advance care planning.

Data source: Local data collection, for example, from local protocols.

Process

a) Proportion of people with dementia who are given information about advance care planning at diagnosis.

Numerator – the number in the denominator who were given information about advance care planning at diagnosis.

Denominator – the number of people with a new diagnosis of dementia.

Data source: Local data collection, for example, local audit of patient records.

b) Proportion of people with dementia having a health or social care review who have a documented discussion about advance care planning.

Numerator – the number in the denominator who have a documented discussion about advance care planning at their health or social care review.

Denominator – the number of people with dementia.

Data source: Local data collection, for example, local audit of patient records.

Outcomes

a) Proportion of people with dementia who feel encouraged to make decisions about their future care.

Numerator – the number in the denominator who feel encouraged to make decisions about their future care.

Denominator – the number of people with dementia.

Data source: Local data collection, for example, a survey of people with dementia.

b) Proportion of people with dementia who are aware they can update their advance care plan at each care review.

Numerator – the number in the denominator who are aware they can update their advance care plan at each care review.

Denominator – the number of people with dementia.

Data source: Local data collection, for example, a survey of people with dementia.

What the quality statement means for different audiences

Service providers (such as memory clinics, community old age psychiatry services, local authorities, neurology clinics, geriatric medicine clinics, community care providers or general practices) ensure that systems are in place for people with dementia and people involved in their care to have early and ongoing opportunities to discuss advance care planning.

Health and social care professionals (such as occupational therapists, psychiatrists, clinical psychologists, geriatricians, neurologists, GPs, nurse consultants, advanced nurse practitioners, social workers and palliative care teams) give people with dementia and people involved in their care early and ongoing opportunities to discuss advance care planning.

Commissioners (such as local authorities, clinical commissioning groups and NHS England) ensure that they commission services that give people with dementia and people involved in their care early and ongoing opportunities to discuss advance care planning.

People with dementia and people involved in their care are supported to plan ahead and make decisions about future care when dementia is diagnosed and every time they have a care review.

Source guidance

Dementia: assessment, management and support for people living with dementia and their carers (2018) NICE guideline NG97, recommendation 1.1.12 and 1.1.13

Definitions of terms used in this quality statement

The opportunity to discuss advance care planning

An opportunity for discussion about:

  • the benefits of planning ahead

  • lasting power of attorney (for decisions about health, welfare, property and financial affairs)

  • an advance statement about their wishes, preferences, beliefs and values regarding their future care

  • advance decisions to refuse treatment

  • their preferences for place of care and place of death

  • any cultural or religious preferences or practices.

This might involve giving information, providing contact details for when the person is ready to have a discussion, or having the discussion at that time, if the person is ready. Opportunities should be given to review and change any advance statements and decisions made at each care review.

[Expert opinion and NICE's guideline on dementia, recommendations 1.1.12 and 1.1.13]

Equality and diversity considerations

People with dementia, cognitive impairment, learning disabilities or language barriers may have difficulties communicating their preferences for care. Healthcare professionals caring for people with dementia should establish the person's cognitive status, and whether they have any speech, language or other communication needs. They should also establish the person's current level of understanding; and whether they would like a person important to them to be present when discussing preferences about their care. All information provided should be accessible, as far as possible, to people with cognitive problems; people receiving information should have access to an interpreter or advocate if needed.