Quality statement 5: Holistic support – social, practical and emotional

Quality statement

People approaching the end of life are offered timely personalised support for their social, practical and emotional needs, which is appropriate to their preferences, and maximises independence and social participation for as long as possible.

Quality measure

Structure: Evidence of local arrangements to ensure that people approaching the end of life are offered timely personalised support for their social, practical and emotional needs, which is appropriate to their preferences, and maximises independence and social participation for as long as possible.

Process:

a) Proportion of people identified as approaching the end of life who receive information on social, practical and emotional support available.

Numerator – the number of people in the denominator receiving information on social, practical and emotional support available.

Denominator – the number of people identified as approaching the end of life.

b) Proportion of people identified as approaching the end of life who receive social and practical support in accordance with their care plan.

Numerator – the number of people in the denominator receiving social and practical support in accordance with their care plan.

Denominator – the number of people identified as approaching the end of life.

Outcome:

a) People approaching the end of life feel supported to live independently, in accordance with their preferences, for as long as possible.

b) People approaching the end of life feel able to maintain social participation, in accordance with their preferences, for as long as possible.

c) People approaching the end of life feel emotionally supported.

See the overview for overarching outcomes.

What the quality statement means for each audience

Service providers ensure that systems are in place to provide timely personalised support to people approaching the end of life for their social, practical and emotional needs. Support should be appropriate to their preferences, and maximise independence and social participation for as long as possible.

Health and social care workers follow local policies and procedures and signpost to relevant national or local services, to ensure that people approaching the end of life are offered timely personalised support for their social, practical and emotional needs. Support should be appropriate to their preferences, and maximise independence and social participation for as long as possible.

Commissioners ensure they commission services that provide timely personalised support to people approaching the end of life for their social, practical and emotional needs. Support should be appropriate to their preferences, and maximise independence and social participation for as long as possible.

People approaching the end of life are offered social, practical and emotional support tailored to their needs and at the right time to help them feel supported, retain their independence and do things they enjoy for as long as possible.

Source guidance

Department of Health quality markers and measures for end of life care 1.20, 7.6 and 8.5.

NICE cancer service guidance key recommendation 10 and recommendations 6.14, 6.16 and 6.24.

Data source

Structure: Local data collection. National cancer peer review programme: Manual for cancer services: rehabilitation measures – various measures relating to rehabilitation for people with cancer (no national data collection).

Process:

a) Local data collection. 2011/12 Adult Social Care Outcome Framework: 3D: the proportion of people who use services and carers who find it easy to find information about services.

b) Local data collection.

Outcome:

a) and b) Local data collection. Transparency in outcomes: a framework for quality in adult social care – The 2011/12 adult social care outcomes framework indicator 1B: the proportion of people who use services who have control over their daily life.

c) Local data collection. Office for National Statistics (ONS) National bereavement survey (VOICES) includes a question on the level of emotional support provided in the last 2 days of life.

Definitions

The definition of 'timely' will depend on the type of need and individual circumstances.

The Department of Health defines social care as a wide spectrum of activities that support and help people live their daily lives. It can include: intimate personal care, managing finances, adapting housing conditions, help attending leisure pursuits and support for carers.

Social support should include, but is not limited to (adapted from NICE cancer service guidance):

  • Assistance to obtain financial support, including information about 'special rules' or equivalent, and access to individuals such as welfare rights and benefits advisers who can provide information and assistance in completing applications.

  • Support with legal and practical affairs such as wills and funeral arrangements.

  • Practical support and advice, including personal and domestic care.

  • Support, advice and therapy to maintain independent living, including home adaptations and the provision of equipment.

  • Services to assess the needs and protect the rights of vulnerable adults or children of a family member approaching the end of life, and to support people approaching the end of life in caring for vulnerable adults or children.

  • Respite and day care/therapy in social and health care settings.

  • Care home placements.

Support for social needs may or may not require social care services. For example, many people rely on families and friends and their community to meet their social needs. Some voluntary organisations provide support services for people approaching the end of life.

Further information on community-based support is available in the 'think local act personal' publications.

National eligibility criteria for adult social care is available in the Department of Health publication Prioritising need in the context of Putting People First: a whole system approach to eligibility for social care – guidance on eligibility criteria for adult social care, England 2010.

The Social Care Institute for Excellence End of Life Care hub provides a place where new and existing information, resources and links are gathered together to support social care practitioners working with people and their families at the end of life.

Practical support should be provided by a multidisciplinary team, which may include occupational therapists, physiotherapists and other health professionals employed by health services, in addition to social care services. Effective practical support will require timely and rapid access to appropriate equipment such as commodes, pressure-relieving mattresses and other aids, to meet individual needs and preferences.

A stepped approach to emotional support may be appropriate, which could include but is not limited to:

  • information about local support services

  • general emotional support, such as supportive conversations with generalist health and social care workers or support from the voluntary, community and faith sectors

  • referral to more specialist support from trained counsellors, mental health workers or specialists in palliative care.

It is recognised that conflict can arise between what professionals may deem appropriate and what the person approaching the end of life wants or prefers, which may also differ with the views of families and carers. Appropriate support is support that has due regard to the preferences of the person approaching the end of life and is in their best interests.