Getting to grips with the standard
Why use the standard?
People with a palliative or life-limiting illness at any age want their health and care team to know and respect their care needs and wishes. People also want everyone involved in their care, including family and carers, to have access to information to help them get the treatment and care that’s right for them at the end of life. A person’s care plan should be designed to be reviewed and updated as their condition changes in line with their wishes and preferences, as discussed with professionals and carers.
The Palliative and End of Life Care Information Standard has been developed to ensure key information is collected and shared in a way that:
Keeps the patient at the centre of decision making
Ensures the care team has access to appropriate information to support decision making
Promotes the sharing of information held in records in different systems
Is standardised across health and care (so it is easy to share across organisational and geographical boundaries)
The benefits
- Helps health and care professionals access information quickly, knowing it can be trusted as a single source of truth, when making key decisions about a person’s care at the end of their life
- Takes account of the person’s wishes, so they feel safe, respected and listened to at the end of their life
- Families and carers are involved in discussing a person’s end-of-life wishes and feel confident that health and care professionals are meeting their loved one’s needs
- A person’s wishes and needs as they near the end of life can be easily shared wherever they are and whoever is providing their care.
Exploring the standard
The table below shows the type of information that would be needed when caring for someone nearing the end of their life. This could include a care plan, an About Me profile that the person creates themselves, information about their care and treatment from their shared care record and end of life information.
You can explore the sections and their contents by opening and closing the arrows in the table.
The following sections from the Core Information Standard for shared care records describe information that is routinely collected in a person’s care record:
The About Me standard may be used by an individual, supported by a carer, to create an About Me profile
A care plan can be co-produced with an individual to plan their palliative and end of life care
Information relating to the person’s palliative and end of life care wishes, e.g. end of life plan name, CPR decision, estimated prognosis
See the Standards Explained section for more information about how PRSB information standards are structured.
The full standard
To explore the full standard you can view this on our website at – theprsb.org/standards/palliativeandendoflifecare
It is important to also review the associated implementation guidance which is also on the page:
We will cover more information about clinical safety risk management in Section 4 – Taking stock and planning.
PRSB recognises that implementers might be at the start of their journey and few, if any, will be able to implement 100% of the standard from the start, and so we have created ‘Must have’ items for every standard which when implemented fully and correctly are the minimum safe and effective implementation of the standard.
Please see Standards Explained for more information about how PRSB information standards are structured.
When to use the standard
The following scenarios describe cases in which the standard should be used. Please click on the images below to view and download a full size version:
Angela has cancer and is being cared for at home
John has dementia and is nearing end of life
How to use the standard
The new Palliative and End of Life Care Information Standard should be implemented in systems that your organisation is using to record and access information about a person’s palliative and end-of-life wishes. This may require adaptation or replacement of existing systems.
Once the information standard has been implemented in your system, health and care professionals should be trained to use it correctly when co-producing or accessing a person’s information in their palliative and end-of-life care record.
Here is a link to an early adopter of the standard, which has training resources and case studies for health and care professionals and patients and carers: The Rosi Project (Suffolk and North East Essex)
How it fits with personalised care plans
A person’s palliative and end of life care plan should ideally form part of their personalised care plan so that clinicians have a holistic view of the individual, the conditions for which they are being treated, and their needs and preferences as they near the end of their life.
The diagram below shows the wide range of different information that can be captured and should be considered as one holistic plan. This includes any contingency plans, additional care plans, About Me and ReSPECT information. If someone doesn’t already have a generalised care plan recorded electronically, you can still create an end of life plan for them.
In this short film, we hear from a GP and a Hospice Clinical Director about the importance of care plans for patients and their relatives during palliative and end of life care.
Sharing information between standards
The Palliative and End of Life Care Information Standard draws upon components of other PRSB standards, including the About Me Standard and Personalised Care and Support Plan Standard. The diagram below shows how the data from other standards is used to support information sharing for someone receiving palliative and end of life care.
People’s care plans will depend on their situation and the conversations they’ve had to date with their health and care team. People don’t need to have an existing care plan to have an end of life one. The most important thing to bear in mind is if there is information in relation to a person’s end of life care that needs to be known by others, you should record it.
PRSB Standards Explained
Why we need standards to record our health and care information in a consistent way so that it can be made available whenever it is needed.
Making change happen
Transformation programmes need clear goals, the right leadership and engaged staff and stakeholders. Get started by reading our information on transformational change.
PRSB Support Available
If you have a question for PRSB, please contact our support team. We have an expert team who can help you find the answer, or direct you to the right place.