Quality statement 2: Individualised care

Quality statement

Adults in the last days of life, and the people important to them, are given opportunities to discuss, develop and review an individualised care plan.

Rationale

Care at the end of life should be responsive to the personal needs and preferences of the person who is dying. Discussions with the person can identify any existing expressed preferences for care, such as advance care plans, and explore their goals and wishes, preferred care setting, current and anticipated care needs and any cultural, religious or social preferences. This information will be captured in an individualised care plan. Opportunities for discussion should continue to be given so the plan can reflect any changes in the person's wishes or needs in the last days of their life.

Quality measures

Structure

a) Evidence of local arrangements to ensure that adults in the last days of life, and the people important to them, are given opportunities to discuss and develop individualised care plans.

Data source: Local data collection.

b) Evidence of local arrangements to ensure that adults in the last days of life have their individualised care plans reviewed.

Data source: Local data collection.

Process

a) Proportion of adults recognised as being in the last days of life, and the people important to them, who are given opportunities to discuss and develop an individualised care plan.

Numerator – the number in the denominator with care records that show the person who was in the last days of life, and the people important to them, were given opportunities to discuss and develop an individualised care plan.

Denominator – the number of adults recognised as being in the last days of life.

Data source: Local data collection based on audits of patient care records.

b) Proportion of adults recognised as being in the last days of life who have an individualised care plan.

Numerator – the number in the denominator with an individualised care plan.

Denominator – number of adults recognised as being in the last days of life.

Data source: Local data collection based on audits of patient care records.

c) Proportion of adults recognised as being in the last days of life whose individualised care plan was followed.

Numerator – the number in the denominator whose individualised care plan was followed.

Denominator – the number of adults recognised as being in the last days of life.

Data source: Local data collection based on audits of patient care records. National data on people who died in hospital whose individual care plan was followed are reported in the Royal College of Physicians' End of life care audit – Dying in hospital report for England.

Outcome

Proportion of adults who feel they have choice and control over their care in the last days of life.

Data source: Local data collection based on feedback from adults in the last days of life and people important to them.

What the quality statement means for different audiences

Service providers (such as hospitals, hospices, GP practices, district nursing services, nursing homes and social care providers) ensure that individualised care plans are created for adults in the last days of life, and that staff providing care to people who are dying give them opportunities to discuss their preferences and needs and document these in the care plan.

Healthcare professionals (such as doctors, nurses, GPs, hospice doctors and district nurses) give adults in the last days of life, and the people important to them, opportunities to discuss, develop and review an individualised care plan. They ask and explore if they have any advance care plans or other existing preferences for their care, and check if they have any new or changed preferences throughout their care. They document the discussions in an individualised care plan.

Commissioners (such as clinical commissioning groups) use contractual and service specification arrangements to ensure that providers use individualised care plans to deliver and coordinate care for adults in the last days of life, and also give opportunities for the person who is dying and the people important to them to discuss, develop and review their care plans.

Adults who are in the last days of life are given chances to discuss the care and support they would like with a member of their care team. This includes their current needs, preferences, any decisions they have already made, and who else should be involved in discussing and making decisions about their care. Offers of discussions continue throughout the last days of life as people may change their minds about the type of care they want, or their needs may change. Discussions, preferences and decisions on care are recorded in an individual care plan.

Source guidance

Care of dying adults in the last days of life (2015) NICE guideline NG31, recommendations 1.2.5, 1.3.1, 1.3.2, 1.3.5 and 1.3.7

Definitions of terms used in this quality statement

Individualised care plan

A plan prepared in discussion with the dying person, the people important to them and the multiprofessional team caring for them which includes the dying person's:

  • personal goals and wishes

  • preferred care setting

  • current and anticipated care needs including:

    • preferences for symptom management and maintaining hydration

    • needs for care after death, if any are specified

  • resource needs.

[Adapted from NICE's guideline on care of dying adults in the last days of life recommendation 1.3.5]

Equality and diversity considerations

Adults in the last days of life with dementia, cognitive impairment, learning disabilities or language barriers may have difficulties communicating their preferences for care. Healthcare professionals caring for adults in the last days of life should establish the person's cognitive status, and if they have any speech, language or other communication needs; their current level of understanding; and if 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; and people receiving information should have access to an interpreter or advocate if needed.