Quality statement 2: Communication and information

Quality statement

People approaching the end of life and their families and carers are communicated with, and offered information, in an accessible and sensitive way in response to their needs and preferences.

Quality measure

Measures from End of life care strategy: quality markers and measures for end of life care (Department of Health 2009).

See also quality measures and national indicators for further information.

Structure:

a) Evidence of local availability of end of life care information in a variety of formats and languages.

b) Evidence of local arrangements for the use of suitable environments to ensure sensitive communication about end of life care.

c) Evidence of local arrangements to ensure that people approaching the end of life and their families and carers know who to contact for advice.

d) Evidence that local service user feedback relating to end of life care, in the form of surveys, compliments and complaints, is collected, analysed and acted upon.

Process: Proportion of people identified as approaching the end of life who are offered information appropriate to their circumstances.

Numerator – the number of people in the denominator offered information appropriate to their circumstances.

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

Outcome:

a) People approaching the end of life and their families and carers feel satisfied with how they are communicated with.

b) People approaching the end of life and their families and carers feel sufficiently informed about what they wish to know and supported to make decisions about their care.

See the overview for overarching outcomes.

What the quality statement means for each audience

Service providers ensure that systems are in place to communicate with, and offer information to, people approaching the end of life and their families and carers, in an accessible and sensitive way, in response to their needs and preferences.

Health and social care workers communicate with, and offer information to, people approaching the end of life and their families and carers, in an accessible and sensitive way, in response to their needs and preferences.

Commissioners ensure they commission services with systems in place to communicate with, and offer information to, people approaching the end of life and their families and carers, in an accessible and sensitive way, in response to their needs and preferences.

People approaching the end of life and their families and carers are communicated with and offered information in a sensitive way, at a time when it is helpful and with respect for their needs and preferences.

Source guidance

Department of Health quality markers and measures for end of life care 1.20, 1.35, 1.37, 2.7, 2.8, 3.15, 3.16, 4.9, 4.10, 5.9, 5.10, 6.9, 6.10, 8.8, 9.5 and 10.3.

NICE cancer service guidance key recommendation 8, and recommendations 1.25, 2.14, 3.17 and 4.7.

Data source

Structure:

a) Local data collection. The National care of the dying audit – hospitals may be relevant.

b) Local data collection. The NHS inpatient services survey asks inpatients (not specific to end of life care) whether they were given enough privacy when discussing their condition or treatment.

c) Local data collection. The NHS inpatient services survey asks inpatients (not specific to end of life care) whether hospital staff told them who to contact if they were worried about their condition or treatment after they left hospital.

d) Local data collection.

Process: Local data collection. The National care of the dying audit – hospitals may be relevant. 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. The NHS inpatient services survey asks inpatients (not specific to end of life care) how much information about their condition or treatment was given to them.

Outcome:

a) Local data collection. Office for National Statistics (ONS) National bereavement survey (VOICES) includes a question on whether the person who has died was told they were likely to die in a sensitive and caring way. The NHS inpatient services survey asks inpatients (not specific to end of life care) whether they were given enough privacy when discussing their condition or treatment.

b) Local data collection. The NHS inpatient services surveyasks inpatients (not specific to end of life care) whether they got answers they could understand when they had important questions to ask a doctor or nurse; whether their family or someone else close to them had enough opportunity to talk to a doctor if they wanted to and whether doctors or nurses gave their family or someone close to them all the information they needed to help care for them.

Definitions

Communication and information should be appropriate to the stage reached by the person who is approaching the end of life, and at a time (not too early or too late) when information is requested or useful in order to make choices or decisions. Communication with, and information for, families and carers should be considered around the same time as with the person approaching the end of life.

'Responsive' communication and information provision recognises that communication is a two-way process and that people's circumstances are likely to change over time. It is also tailored to individual circumstances, such as recognising the different needs of children and young people compared with adults.

Information offered to people approaching the end of life, and their families and carers, should include:

  • information about treatment and care options, medication and what to expect at each stage of the journey towards the end of life

  • who they can contact at any time of day or night to obtain advice, support or services

  • practical advice and details of other relevant services such as benefits support

  • details of relevant local and national self-help and support groups.

All information should be available in a variety of accessible formats and free at the point of delivery. Examples of leaflets on end of life care include those available to download from Dying Matters Coalition. Examples of information resources available specifically for children and young people include those from The Marie Curie Palliative Care Institute Liverpool and the Childhood Bereavement Network.

All communication and information provision should be sensitive to the needs and preferences of the person approaching the end of life and their families and carers, including those who do not wish to have such conversations at the present time. Those who do not wish to have information should have their preferences respected.