Palliative and End of Life Care Standard v1.11

Details of the person's name.

The date of birth of the person.

The phenotypic sex of the person.

This is as observed by clinical examination and assessment at birth. Where there is no health and care record from birth, and clinical examination and assessment is not possible, this can be stated by the person or proxy.

This is the ‘Person Administrative Gender’ held on the Personal Demographics Service (PDS).

• This is a legacy data item for England only to represent the data held on the Personal Demographics Service (PDS). NHS England is reviewing the data items in PDS so this will be replaced.
• This data item should be read-only. 
• In the majority of cases ‘Administrative gender’ and ‘Sex at birth (observed)’ would be the same. However, in some cases displaying both ‘Administrative gender’ and ‘Sex at birth (observed)’ would mean that transgender status could be inferred. Implementers should seek information governance advice on when and to whom access can be given to a person’s record (or specific data within a person’s record) where information in the record indicates transgender, non-binary or gender diverse status. 

The unique identifier for a person within the NHS in England and Wales.

Provides an indication of the reliability of an NHS Number.

Country specific or local identifier, e.g. Community Health Index (CHI) in Scotland.

Person’s usual place of residence, and where relevant temporary and correspondence addresses.

A person's contact details (including email address, address and telephone number) may change or become inactive, so where possible details should be checked to ensure they are up to date.

Details of the person's contact information.

A person's contact details (including email address, address and telephone number) may change or become inactive, so where possible details should be checked to ensure they are up to date.

Preferred contact method, e.g. email, letter, phone, text message etc.

The person's telephone number.

The person's email address.

Other contact details (e.g., via fax, SMS, URL).

The person's stated gender identity.

• Gender identity should ONLY be recorded if a person has a gender identity and wants it recorded in their healthcare record and a clinician decides it is appropriate to record it. If gender identity has been recorded it should be shared.
• The term ‘gender identity’ refers to some people’s sense that they identify as a member of the male or female sex or as neither (or something else), particularly when this identity is different from their sex at birth. It refers to how individuals understand themselves. Gender identity is always expressed by the person themselves.
• This is a legacy value set. NHS England is reviewing the value sets so this will change.
• Displaying both ‘Gender identity’ and ‘Sex at birth (observed)’ would mean that transgender status could be inferred. Implementers should seek information governance advice on when and to whom access can be given to a person’s record (or specific data within a person’s record) where information in the record indicates transgender, non-binary or gender diverse status.

Any additional information stated by the person about their gender identity.

• Information about gender identity should ONLY be recorded if a person has a gender identity and wants additional information about it recorded in their healthcare record and a clinician decides it is appropriate to record it.
• If additional information about a person’s gender identity has been recorded it should be shared.

The person's stated pronouns.

• Pronouns should ONLY be recorded if a person wants their pronouns recorded in their healthcare record and a clinician decides it is appropriate to record them.
• If pronouns have been recorded they should be shared. 

The ethnicity of the person as specified by the person.

Please note:

• NHS England is reviewing the data item for ethnicity and therefore the value sets may change. 

The religious affiliation as specified by the person.

Please note:

• NHS England is reviewing the data item for religion and therefore the value sets may change.

An indicator to identify the legal marital status of the person.

Please note:

• NHS England is reviewing the data item for marital status and therefore the value sets may change.

This is a GP practice record entry. There may be 0 to many record entries under a section. Each record entry is made up of a number of elements or data items.

The name of the person's GP. If the person is registered with a GP practice, their usual GP name will be something volunteered by the person or their representative.

Name and address of the person's registered GP Practice. Registered GP practice details are available from the Person Demographics Service (PDS), or volunteered from the person or their representative. Include details of the practice name and address.

The identifier of the registered GP practice.

About Me record entry.

The cardinality is 0 to 1 as viewers of an About Me should only see the latest version/record entry (not all the record entries). However, systems should hold previous versions of About Me as an audit trail.

A description of what is most important to you.

Key Information: Include any essential information that any professional in health and social care should know about you in any situation, including emergencies.

Other Information: This could include: values, spirituality/religion, ethnicity, culture, pets, goals and aspirations, meaningful activities including leisure activities, visiting places, sport and exercise, listening to music, employment, education, volunteering.

Prompt questions:

1. What does someone caring for, or supporting you, need to know about you in an emergency?

Consider including any important preferences, needs and wishes that indicate how you need to be cared for and supported in an emergency such as the need to avoid any disturbing stimuli e.g., noise, visual, smell, taste or touch etc. For example by being seen in a quiet or darkened room, the need for visual aids, the need for a translator or the need for vegan appropriate medications etc. Consider including any food allergies or risk of choking. Consider referencing other documents in which you have already recorded any needs, wishes and preferences such as an advance decision, a lasting power of attorney, a communication or hospital passport or an end-of-life plan.

2. What’s most important to you?

This is just as important as emergency information. Think about your core values, spiritual beliefs, culture, ethnicity and religion as they relate to your care. Think about what makes you happy, for example meaningful activities you enjoy, pets, objects, computer games, exercise or sport, places you like to visit, education or spending time with family and friends. There may be a specific stimulating sensory item or activity you enjoy.

3. What are your aspirations and goals for the future?

The coded value for what is most important to me.

About Me response.

Free text.

Multi-media.

The filename of the multi-media file. This should not include the suffix or extension showing the file type (e.g. .MP4).

The media type of the multi-media file.

The actual multi-media file if it is stored in the system.

The multi-media file can either be stored in the system using this element, or using a URL.

The URL or link to the multi-media file where it is stored in a different system.

The multi-media file can either be referenced with a URL or link using this element, or by storing the actual file using the muti-media file element.

  Details of who is important to you and why. They could be family members, carers, friends, members of staff etc. Include how you want the people important to you to be engaged and involved in your care and support in both emergency and normal situations. Include how you stay connected to the people important to you. Who should not be contacted or consulted about your care and support and why, if you wish to say.

Prompt questions:

1. Who are the important people in your life and why?

Think about family, friends, staff in the care home and people who support you at home or in the community or at a club.

2. Who should be contacted in an emergency and why?

3. Who do you want to be consulted on, and involved in, your care and support in an emergency and in normal situations?

4. Is there anyone that should not be contacted or consulted about your care and support and why (if you wish to say)?

The coded value for people who are important to me.

About Me response.

Free text.

Multi-media.

The filename of the multi-media file. This should not include the suffix or extension showing the file type (e.g. .MP4).

The media type of the multi-media file.

The actual multi-media file if it is stored in the system.

The multi-media file can either be stored in the system using this element, or using a URL.

The URL or link to the multi-media file where it is stored in a different system.

The multi-media file can either be referenced with a URL or link using this element, or by storing the actual file using the muti-media file element.

A description of how you communicate normally including any communication aids you use, for example a hearing aid.

• Include your preferred language of communication, if your first language is not English.
• Include how you would communicate when you are in pain or distress.
• Include how you communicate choices.
• Include how you give feedback or raise a concern.
• Include how you like to receive information.

Describe how you would like others to engage and communicate with you, including how you would like to be addressed.

Prompt questions:

1. What do people caring for you and supporting you need to know about how you communicate and how they should communicate with you?

Consider:

• the language you prefer to communicate in.
• whether you communicate by, for example, signing, symbols, Picture Exchange Communication System (PECS), gestural or body language.
• how you like to be addressed and whether you use a communication aid (high or low tech) (If so, who provides maintenance and technical support?).
• whether people speaking to you need to speak slowly and clearly.

2. How do you let people know you are in pain, anxious or in distress?  For example, do you communicate it verbally, facially or through body language?

3. How do you make choices? When offered a verbal choice do you always make an informed choice, or do you need those supporting you to explain choices in detail?

4. How do you indicate yes and no?

5. How do you give feedback or raise a concern?

6. What support would help you understand what is happening and what treatment you might need in hospital?

7. When is a good and bad time to have important conversations with you? 

The coded value for how I communicate and how to communicate with me.

About Me response.

Free text.

Multi-media.

The filename of the multi-media file. This should not include the suffix or extension showing the file type (e.g. .MP4).

The media type of the multi-media file.

The actual multi-media file if it is stored in the system.

The multi-media file can either be stored in the system using this element, or using a URL.

The URL or link to the multi-media file where it is stored in a different system.

The multi-media file can either be referenced with a URL or link using this element, or by storing the actual file using the muti-media file element.

A description covering what you are able to do, how you engage with others and how you feel on a typical day through to on a day when you are unwell or really unwell.

• Include any causes that might result in you becoming unwell and strategies for avoiding or addressing the causes. For example, not drinking enough water could cause constipation.
• Include any signs that indicate you might be becoming unwell.
• On a bad day describe what is different about what you are able to do, how you engage with others and how you feel.
• Include how your everyday life is affected by any medical conditions e.g. dementia and any symptoms e.g. itchiness, cough, pain and how you manage those conditions.
• Include past health issues or experiences that need to be considered.
• Include your wellbeing and lifestyle goals and aspirations.

Prompt questions:

1. What shows the good things in your life and who you are as a person?

Think about photos, videos, letters from people you value, Facebook pages, Twitter or Instagram accounts.

2. What are you able to do and how do you feel on a typical day?

3. How do any conditions or symptoms you live with affect you and how do you manage them?

4. Do you have any long-term pain, if so, how do you manage it?

5. Do you have past events or health issues that affect you, if so, how do you manage them?

6. What triggers or vulnerabilities can cause you to become unwell, how do you avoid or address them?

7. What might indicate that you are becoming unwell, how do you manage it?

8. What are you able to do and how do you feel on a bad day, how do you want to be supported?

9. What helps and hinders you to be well?

The coded value for my wellness.

About Me response.

Free text.

Multi-media.

The filename of the multi-media file. This should not include the suffix or extension showing the file type (e.g. .MP4).

The filename of the multi-media file. This should not include the suffix or extension showing the file type (e.g. .MP4).

The media type of the multi-media file.

The actual multi-media file if it is stored in the system.

The multi-media file can either be stored in the system using this element, or using a URL.

The URL or link to the multi-media file where it is stored in a different system.

The multi-media file can either be referenced with a URL or link using this element, or by storing the actual file using the muti-media file element.

A description of things you want someone supporting you to do (or not to do). Things you want someone to do might include (for example): Talk to me not to my carer, remind me to take my medication, encourage me to wash my hands regularly, explain to me what is happening and why, respond to my communication.

A description of things you do not want someone supporting you to do might include (for example): Discussing or asking questions about certain topics, making assumptions about something, providing support when it is not wanted, talking to you in a certain way, or asking you to undergo a specific intervention or to take a medication that you do not want.

Prompt questions:

1. What are the really important things that you want someone to do when caring for or supporting you?

2. What are the really important things that you don’t want someone to do when caring for or supporting you?

The coded value for please do and please do not.

The coded value for please do and please do not.

About Me response.

Free text.

Multi-media.

The filename of the multi-media file. This should not include the suffix or extension showing the file type (e.g. .MP4).

The media type of the multi-media file.

The actual multi-media file if it is stored in the system.

The multi-media file can either be stored in the system using this element, or using a URL.

The URL or link to the multi-media file where it is stored in a different system.

The multi-media file can either be referenced with a URL or link using this element, or by storing the actual file using the muti-media file element.

A description of how and when you want someone caring for you to support you.

• This could include support needs in an emergency situation (for example taking blood).
• This could include support you need to maintain important routines or to carry out particular activities, for example: personal care routines, eating and drinking, bedtime routines, taking medications, moving and transitioning.
• This could also include support needed with: wearing glasses/hearing aids/false teeth etc, making informed choices or understanding dangers and risks, managing your emotions, moods and behaviours, memory or confusion.
• Include how your support needs change in different environments. Include any triggers that might result in you needing further support and strategies for avoiding or addressing the triggers. Include how you want the support to be provided.

Prompt questions:

1. What do people caring for and supporting you in an emergency need to know about how and when to support you?

2. What are your important routines? What are you able to do for yourself, what do you need support with and how do you want to be supported?

Think about:

• your morning, bedtime and personal care routines.
• dressing and undressing.
• using the toilet.
• having a shower or bath.
• brushing your teeth.

Think about eating and drinking:

• Do you use any special bowls (e.g. lipped plate), cutlery (e.g. weighted spoon) or cups?
• How do you like your food presented (e.g. chopped up or liquified etc.)?
• How do you like to be supported to eat (e.g. verbal prompts or physical help)?
• What do you like to drink and eat?
• How do you like to be supported in making food and drink choices?
• How do you like to be supported in preparing food? 

Think about sleeping:

• Do you sleep well at night?
• What helps you to have a good night’s sleep (e.g. warm milk before bed, leaving lights on, music)?
• If you have disturbed sleep, how do you like to be supported? 

Think about taking medication:

• How do you like to take your medication (e.g. liquid or tablet form, mixed up with a drink or food etc.)
• What helps you take your medication (e.g. verbal encouragement)? 

 Think about your mobility:

• Do you use any walking aids (e.g. splints, frames, wheelchair)?
• How do you like to be supported to move around?
• Think about what you can do for yourself and how you like to be supported when transferring? e.g. from a wheelchair to bed.
• Can you use public transport independently? If not, how do you like to be supported?

Think about memory and thoughts:

• What helps you remember things (e.g. use of diaries, apps or photographs etc.)?
• If you are confused what helps you and how do you like to be supported? 

Think about your emotions, moods and behaviours:

• What do you find difficult or upsetting, how do you behave?
• How do you like to be supported to manage your emotions, moods and behaviours? 

Think about work, college and/or leisure activities:

• How do you like to be supported in these activities?

3. What works well and what doesn’t work for you when someone is supporting you?

4. What triggers could result in you needing further support and strategies for avoiding or addressing the triggers?

5. How do your support needs change in different environments? 

The coded value for how and when to support me.

About Me response.

Free text.

Multi-media.

The filename of the multi-media file. This should not include the suffix or extension showing the file type (e.g. .MP4).

The media type of the multi-media file.

The actual multi-media file if it is stored in the system.

The multi-media file can either be stored in the system using this element, or using a URL.

The URL or link to the multi-media file where it is stored in a different system.

The multi-media file can either be referenced with a URL or link using this element, or by storing the actual file using the muti-media file element.

A description of what is also worth knowing about you for people caring or supporting you.

• This could include a short history of your life (where you have worked, where you lived, important events in your life, important people in your past life).
• This could include a short profile of your current life: your work / study, your aspirations, your skills, your networks, things you like e.g. particular foods, places, a football team and things you like to talk about, things you dislike.
• This could also include any care and support preferences that have not been included elsewhere.

Prompt questions:

1. Provide a short summary of your past life.

Think about:

• where you worked, what jobs you have had.
• where you lived.
• important people in your life.
• important events in your life. 

2. Provide a short profile of your current life.

Think about:

• where you work, your job or college.
• your strengths and skills.
• your networks.
• exercise.

3. What do you like to do?

Think about people you like to see, places you like to visit, activities you enjoy doing and your favourite tv programmes etc.

4. What are your food preferences or requirements?

5. What do you like to talk about?

6. What do you not like?

Think about environments you do not like to be in, food, places, things you do not like to do and things you do not like to talk about.

The coded value for what is also worth knowing about me.

About Me response.

Free text.

Multi-media.

The filename of the multi-media file. This should not include the suffix or extension showing the file type (e.g. .MP4).

The media type of the multi-media file.

The actual multi-media file if it is stored in the system.

The multi-media file can either be stored in the system using this element, or using a URL.

The URL or link to the multi-media file where it is stored in a different system.

The multi-media file can either be referenced with a URL or link using this element, or by storing the actual file using the muti-media file element.

Where relevant, this is a record of name, relationship/role and contact details of the individual(s) who supported the person to write this section e.g. carer, family member, advocate, professional.

This data item records the information about who supported the person to write the About Me. This could pick up an individual's details if they exist in a system being used to create an About Me. Where someone does not have the capacity or capability to do their About Me themselves or with support, this should be used to explain how it was completed (e.g. from their experience of caring for the person supported by notes from their record etc). Note that getting the views of the person as much as possible should remain the aim.

This is a record of the date that this About Me was created or last updated.

This is a record of the date that this About Me was created or last updated.

A record of reasonable adjustments that must be provided by the service to comply with the Equality Act 2010.

Under the Equality Act 2010, organisations have a legal duty to make changes in their approach or provision to ensure that services are as accessible to people with disabilities as they are for everybody else. These changes are called reasonable adjustments. Reasonable adjustments can mean alterations to buildings by providing lifts, wide doors, ramps and tactile signage, but may also mean changes to policies, procedures and staff training to ensure that services work equally well for people with physical or sensory disabilities, learning disabilities or long-term conditions such as dementia. Other adjustments include longer appointments, providing easy read materials or communications via a carer. This legal duty is anticipatory which means a service should know about a person’s need for adjustments when they are referred or present for care. For this to happen, and for optimum care to be delivered, adjustments need to be recorded and shared across the NHS.

This is a Reasonable Adjustments Digital Flag record entry. There may be 0 to many record entries under a section. Each record entry is made up of a number of elements or data items.

A coded flag to indicate that the person has an impairment with substantial and long term adverse effect(s) on their normal day to day activity meeting the threshold for disability under the Equality Act 2010. I.e. an impairment or disability requiring reasonable adjustments is present.

This is a consent for reasonable adjustments information sharing record entry. There may be 0 to many record entries under a section. Each record entry is made up of a number of elements or data items.

This is a record of the person's refusal to consent for information sharing including upload of data to the reasonable adjustment digital flag on the NHS Spine.

This is a reasonable adjustment record entry. There may be 0 to many record entries under a section. Each record entry is made up of a number of elements or data items.

The adjustment category code of the reasonable adjustment as per DAPB4019: Reasonable Adjustment Digital Flag. E.g. requires specific contact method, requires communication professional.

The reasonable adjustment required.

Further detail about the support required.

Any supplementary information for context and personalisation relating to the coded reasonable adjustment SHOULD be provided as free text.

Supplementary free text with detail about the support required MUST be provided if the bespoke reasonable adjustment code and associated SNOMED CT concept (1108111000000107 |Requires reasonable adjustment for health and care access (Equality Act 2010)|) is used.

This is a reasonable adjustments review record entry. There may be 0 to many record entries under a section. Each record entry is made up of a number of elements or data items.

Indicates that a review of a person's reasonable adjustment needs has been done.

A record of any impairments that the person has meeting the threshold for disability under the Equality Act 2010.

This is an impairment record entry. There may be 0 to many record entries under a section. Each record entry is made up of a number of elements or data items.

The category of the impairment or disability e.g. physical (such a mobility or dexterity), sensory (such as sight or hearing) or social or behavioural (for example associated with autism spectrum disorder) etc.

The specific impairment or disability e.g. night blindness or anterograde amnesia.

Further detail about the impairment.

A record of any underlying conditions that the person has related to an impairment or disability, if known.

This is an underlying condition record entry. There may be 0 to many record entries under a section. Each record entry is made up of a number of elements or data items.

Identifies the category of the condition.

Underlying condition related to the impairment or disability, if known.

Further detail about the underlying condition.

This is an alerts record entry. There may be 0 to many record entries under a section. Each record entry is made up of a number of elements or data items.

Any significant information meriting a specific and highly visible warning to any user (e.g. metallic implant, potential dangerous pet).

Details of the person's consent relating to child.

The person with parental responsibility or appointed guardian where a child lacks competency. Consideration of age and competency, applying Gillick competency or Fraser guidelines.

The location of the consent document.

Details of the person's mental capacity assessment(s).

Mental capacity needs to be assessed at each instance where treatment decisions need to be made. Hence there should be provisions for more than one mental capacity assessment to be recorded and shared. If sharing the outcome of a mental capacity assessment it is important to record to which decision it relates. This is particularly important for end of life care planning where a person’s capacity to make decisions for themselves may change at short notice or where they have capacity to make some decisions but not others at the time.

Whether an assessment of the mental capacity of the (adult) person has been undertaken, if so, what capacity the decision relates to and the outcome of the assessment. Also record best interests decision if person lacks capacity. There can be multiple assessments carried out for a person over time.

The location of the mental capacity assessment information.

Details of the person's lasting power of attorney (LPA) for health and welfare (or equivalent).

The following is a general overview of lasting power of attorney or equivalent to support implementation of the Palliative and End of Life Information Standard. It may not be fully accurate or up to date and MUST not be considered legal advice.

Lasting Power of Attorney (or equivalent) refers to the appointment of one or more people (attorneys) to take decisions on their behalf if they subsequently lose capacity. This is known as ‘Lasting Power of Attorney’ (LPA) under the provisions of the Mental Capacity Act 2005 (England and Wales) [ https://www.legislation.gov.uk/ukpga/2005/9/contents ] and the Mental Capacity Act (Northern Ireland) 2016 [ https://www.legislation.gov.uk/nia/2016/18/contents ], 'Enduring Power of Attorney' (EPA) under The Enduring Powers of Attorney (Northern Ireland) Order 1987 [ https://www.legislation.gov.uk/nisi/1987/1627/crossheading/enduring-powers-of-attorney/made ] and 'Continuing Power of Attorney' (CPoA) or 'Welfare Power of Attorney' (WPoA) under the Adults with Incapacity (Scotland) Act 2000 [ https://www.legislation.gov.uk/asp/2000/4/contents ]. There are LPAs (or WPoAs) for health and welfare and LPAs (or CPoAs / EPAs) for property and affairs. Northern Ireland has not adopted the LPA model for health and welfare. Only health and welfare attorneys can make healthcare decisions, and they can only make decisions about life-sustaining treatment if this has been specifically allowed in the LPA (or equivalent document in Scotland). LPAs (or equivalent) come into effect only when the person in question loses capacity to make the decision(s) to which the powers of attorney relate.

An LPA (or equivalent) must be in a prescribed form and (to be valid) be registered with the Office of the Public Guardian (OPG) in England and Wales, the OPG Scotland or the Office of Care and Protection (OCP) in Northern Ireland.

If life-sustaining treatment is being considered the LPA (or equivalent document) must state specifically that the attorney has been given power to consent to or refuse life-sustaining treatment.

The name and contact details for any appointed attorney should be included in the record. Alternatively, details of any deputy (or equivalent, i.e. guardian in Scotland or controller in Northern Ireland) appointed by court order to make decisions about the person’s health and welfare should be recorded where no LPA (or equivalent) is in place. A deputy (or equivalent) does not have the power to refuse life-sustaining treatment. Information such as the document location and the date that the LPA was registered with the OPG /OCP is important to record.

Knowing who to consult with and who is the key decision maker on a person’s health and welfare is very important to decision making if the person lacks capacity to make their own decisions.

A coded flag to indicate that the person has a lasting power of attorney for health and welfare (or equivalent) in place.

Record of one or more people who have been given power (LPA or equivalent) by the person, when they had capacity, to make decisions about their health and welfare should they lose capacity to make those decisions. Also details of any person (deputy or equivalent) appointed by the Court of Protection (or equivalent) to make decisions about the person’s health and welfare when they lack capacity.

Where there are multiple appointed attorneys the LPA (or equivalent) itself should be referred to in order to understand how their responsibilities are held, which could be jointly, jointly or severally or jointly for some decisions but jointly and severally for other decisions relating to health and/or welfare.

The name of the appointed person.

The relationship the appointed person has to the person, e.g. father, grandmother, family friend etc.

The contact details (UK telephone number) of the appointed person.

The location of the lasting power of attorney (LPA or equivalent) for health and welfare.

Details of the person's lasting power of attorney (LPA or equivalent) for property and financial affairs.

The following is a general overview of lasting power of attorney for property and financial affairs or equivalent to support implementation of the Palliative and End of Life Information Standard. It may not be fully accurate or up to date and MUST not be considered as legal advice.

Lasting Power of Attorney (or equivalent) refers to the appointment of one or more people (attorneys) to take decisions on their behalf if they subsequently lose capacity. This is known as ‘Lasting Power of Attorney’ (LPA) under the provisions of the Mental Capacity Act 2005 (England and Wales) [ https://www.legislation.gov.uk/ukpga/2005/9/contents ] and the Mental Capacity Act (Northern Ireland) 2016 [ https://www.legislation.gov.uk/nia/2016/18/contents ], 'Enduring Power of Attorney' (EPA) under The Enduring Powers of Attorney (Northern Ireland) Order 1987 [ https://www.legislation.gov.uk/nisi/1987/1627/crossheading/enduring-powers-of-attorney/made ] and 'Continuing Power of Attorney' (CPoA) or 'Welfare Power of Attorney' (WPoA) under the Adults with Incapacity (Scotland) Act 2000 [ https://www.legislation.gov.uk/asp/2000/4/contents ]. There are LPAs (or WPoAs) for health and welfare and LPAs (or CPoAs / EPAs) for property and affairs. Northern Ireland has not adopted the LPA model for health and welfare. Only health and welfare attorneys can make healthcare decisions. LPAs (or equivalent) come into effect only when the person in question loses capacity to make the decision(s) to which the powers of attorney relate.

An LPA (or equivalent) must be in a prescribed form and (to be valid) be registered with the Office of the Public Guardian (OPG) in England and Wales, the OPG Scotland or the Office of Care and Protection (OCP) in Northern Ireland.

The name and contact details for any appointed attorney should be included in the record. Alternatively, details of any deputy (or equivalent, i.e. guardian in Scotland or controller in Northern Ireland) appointed by court order to make decisions about the person’s property and financial affairs should be recorded where no LPA (or equivalent) is in place. Information such as the document location and the date that the LPA was registered with the OPG /OCP is important to record.

Lasting power of attorney for property and financial affairs is included in the Palliative and End of Life Care Information Standard to record if one or more people have been given power to make decisions about a person’s property and financial affairs.

A coded flag to indicate that the person has a lasting power of attorney for property and financial affairs (or equivalent) in place.

Record of one or more people who have been given power (LPA or equivalent) by the person, when they had capacity, to make decisions about their property and financial affairs should they lose capacity to make those decisions. Also details of any person (deputy or equivalent) appointed by the Court of Protection (or equivalent) to make decisions about the person’s property and financial affairs when they lack capacity.

Where there are multiple appointed attorneys the LPA (or equivalent) itself should be referred to in order to understand how their responsibilities are held, which could be jointly, jointly or severally or jointly for some decisions but jointly and severally for other decisions relating to property and/or financial affairs.

The name of the appointed person.

The relationship the appointed person has to the person, e.g. father, grandmother, family friend etc.

The contact details (UK telephone number) of the appointed person.

The location of the lasting power of attorney (LPA or equivalent) for property and affairs.

Details of the person's ADRT status.

This is a decision to refuse a specific treatment made in advance by a person who has capacity to do so. This decision only applies at a future time when that person lacks capacity to consent to, or refuse, the specified treatment, and provided it remains valid and applicable. This is set out in section 24 (1) of the Mental Capacity Act. Specific rules apply to advance decisions to refuse life-sustaining treatment.  

A clinician should satisfy themselves that the Advance Decision to Refuse Treatment (ADRT) is valid and that the circumstances that they are dealing with are those envisaged when the person made the ADRT. A valid and applicable ADRT is legally binding. The record should include the location of the legal document.

A record of an advance decision to refuse one or more specific types of future treatment, made by a person who had capacity at the time of recording the decision. The decision only applies when the person no longer has the capacity to consent to or refuse the specific treatment being considered. An ADRT must be in writing, signed and witnessed. If the ADRT is refusing life-sustaining treatment it must state specifically that the treatment is refused even if the person’s life is at risk.

Location of the advance decision to refuse treatment document.

This is a professional contacts record entry. There may be 0 to many record entries under a section. Each record entry is made up of a number of elements or data items.

The name of the professional with responsibility for the care of the person.

The role the professional has in relation to the person e.g. GP, physiotherapist, community nurse, social worker, key worker, care home manager, care coordinator, LA hospital liaison person, care home contact, hospital clinician, Independent Mental Capacity Advocate (IMCA) etc.

A flag that identifies the professional contact is the key worker assigned to the person.

The specialty of the professional e.g. physiotherapy, oncology, mental health etc.

The name of the team.

The details of the organisation providing the service.

The name of the organisation providing the service.

PRSB recommends use of Organisation Data Service (ODS) codes to retrieve organisation names, where available.

The Organisation Data Service (ODS) code (unique identifier) for the organisation providing the service.

Implementers are advised to review the key documents maintained and published by the ODS [ https://digital.nhs.uk/services/organisation-data-service ] including about the Data Search and Export Service [ https://digital.nhs.uk/services/organisation-data-service/data-search-and-export ] and FHIR R4 implementation guide [ https://simplifier.net/guide/organisation-data-services/Home?version=1.2.0-beta ].

Contact details of the professional (e.g. telephone number, email address etc.).

The start date of the professional relationship with the person.

The end date of the professional relationship with the person.

This is a personal contacts record entry. There may be 0 to many record entries under a section. Each record entry is made up of a number of elements or data items.

The name of the personal contact.

The relationship the personal contact has to the person, e.g. father, grandmother, family friend etc. Includes additional roles the person performs on behalf of the other (e.g. carer, next of kin, emergency contact, dependent, etc.).

Contact details of the personal contact (e.g. telephone number, address, email address etc.).

Notes on the significance of the personal contact to the person.

This is a problem list record entry. There may be 0 to many record entries under problem list. Each record entry is made up of a number of elements or data items.

A condition which needs addressing and so is important for every professional to know about when seeing the person.

Problems may include diagnoses, symptoms, and social or behavioural issues

A date or estimated date that the problem began.

The date or estimated date the problem was resolved.

The stage of the disease where relevant.

Supporting text may be given covering the problem.

This is primary palliative care diagnosis record entry. There may be 0 to many record entries under a section. Each record entry is made up of a number of elements or data items.

The primary end of life problem for the person.

Further details may be included on the person's palliative or end of life diagnosis.

Details of the type of accommodation where the person lives.

Accommodation status is an indication of the type of accommodation that a person normally lives in, including if they are homeless, in prison or do not have a home address. It may change and can be updated when this changes or whenever the care plan is reviewed. 

It has been highlighted for specific inclusion in the Palliative and End of Life Care Information Standard to help distinguish people who live in a communal setting such as a nursing home or those who are homeless, thus enabling comparisons in end-of-life care and interventions for different people and ensuring equity of access and quality of care.

An indication of the type of accommodation where the person lives.

This should be based on the main or permanent residence.

This is an allergies and adverse reactions record entry. There may be 0 to many record entries under a section. Each record entry is made up of a number of elements or data items.

The type of reaction experienced by the person (allergic, adverse, intolerance).

The agent such as food, drug or substances that has caused or may cause an allergy, intolerance or adverse reaction in this person or “No known drug allergies or adverse reactions” or “Information not available”.

Details of the reaction.

The substance, or a class of substances, that is considered to be responsible for the adverse reaction.

A description of the manifestation of the allergic or adverse reaction experienced by the person. For example, skin rash.

Date and time when manifestations showed e.g could be at home a few days earlier than the contact.

The severity of the reaction.

The certainty that the stated causative agent caused the allergic or adverse reaction.

The route by which the person was exposed to the substance.

Any additional comment or clarification about the adverse reaction.

Results of investigations that confirmed the certainty of the diagnosis. Examples might include results of skin prick allergy tests.

When the reaction was first experienced i.e. this may not be the first time this has happened. May be a date or partial date (e.g. year) or text (e.g. during childhood).

The date the allergy was diagnosed as ended.

Any further comments on the person's allergies or adverse reactions.

All medications and devices that have been issued to be entered via this Medication item entry. Handles details of continuation / addition / amendment of admission medications.

Medication item cluster.

May be generic name or brand name.

The form of the medication e.g. capsule, drops, tablet, lotion etc.

The route by which the medication is administered e.g. oral, IM, IV.

The anatomical site at which the medication is to be administered.

The technique or method by which the medication is to be administered.

Indicates if the medication or device is acquired without a prescription i.e. got by the person over the counter.

A structural representation of the elements carried by the dose syntax in 'parsable dose strength / timing' i.e. dose strength, dose timing, dose duration and maximum dose.

A structural representation of dose amount, e.g. 20mg or 2 tablets. This element will generally only be used when persisting data within systems with 'parsable dose directions' being used to exchange the same information between systems. As per FHIR Dose Syntax Implementation Guidance (NHS Digital). https://simplifier.net/guide/ukcoreimplementationguideformedicines/home?version=current

A slot containing a structural, computable representation of dose timing and maximum dose. This element will generally only be used when persisting data within systems with 'parsable dose directions' being used to exchange the same information between systems. As per FHIR Dose Syntax Implementation Guidance (NHS Digital): https://simplifier.net/guide/ukcoreimplementationguideformedicines/home?version=current

Recommendation of the time period for which the medication should be continued, As per FHIR Dose Syntax Implementation Guidance (NHS Digital): https://simplifier.net/guide/ukcoreimplementationguideformedicines/home?version=current

Direction not to discontinue should be recorded using additional instructions.

Describes the entire medication dosage and administration directions including dose quantity and medication frequency and optionally duration e.g. “1 tablet at night" or “2mg at 10pm”.

Allows for: requirements for adherence support, e.g. compliance aids, prompts and packaging requirements, additional information about specific medicines e.g. where specific brand required, person requirements, e.g. unable to swallow tablets.

Details of the overall course of medication.

The status of this prescription.

Reason for medication being prescribed, where known.

The date and/or time that the medication course should begin.

The date and/or time that the medication course should finish.

A link to the record which contains the indication for this medication order.

Suggestions about duration and/or review, ongoing monitoring requirements, advice on starting, discontinuing or changing medication. Additional comment or recommendation about the medication course e.g. 'Patient named supply', 'unlicensed medication', 'Foreign brand' or monitoring recommendations.

Records the changes made to medication.

The nature of any change made to the medication.

Reason for change in medication, e.g. sub-therapeutic dose, person intolerant.

The date of the change - addition, or amendment.

Where a change is made to the medication i.e. one drug stopped and another started or eg dose, frequency or route is changed.

The total daily dose of this medication. This is helpful for estimating optimal adherence to dosing guidance. It may be computed from product/dose strength and frequency or entered manually.

Medical devices.

Any medical device that isn't prescribed.

Any information regarding the medical device.

Medication discontinued entry.

The name of the medication or medical device being discontinued.

The status of any change made to the medication. MUST CONTAIN STOPPED.

The clinical indication for any changes in medication status.

The date of the discontinuation.

Any additional comment about the discontinuation or amendment.

Any strengths and assets the person has relating to their goals and hopes about their health and well-being.

Details of the person needs, concerns or problems.

The overall goals, hopes, aims or targets that the person has. Including anything that the person wants to achieve that relates to their future health and wellbeing. Each goal may include a description of why it is important to the person. Goals may also be ranked in order of importance or priority to the person.

Assessment of the person's motivations to achieve this goal, how important the goal is to the person on a scale of 1-10.

Actions or activities the person or others plan to take to achieve the person's goals and the resources required to do this.

What the action is and how it is to be carried out?

Name and role (e.g. person, carer, GP, OT, etc.) of the person, or a team, carrying out the proposed action, and, if relevant where action should take place.

The name of the professional or person carrying out the proposed action.

The role of the person providing the service.

The name of the team.

Contact details of the professional (e.g. telephone number, email address etc.).

Planned date, time, or interval, as relevant.

Suggested strategies for potential problems.

The status of the action or activity e.g. in progress, done, refused.

How confident the person feels to carry out the action associated to the goal.

Date when action/activity record was last updated.

When the action evaluation needs to be reviewed. SNOMED CT tag : - 425268008 |Review of care plan|.

Details of the person's stage goals.

A specific sub-goal that is related to the overall goal as agreed by the person in collaboration with a professional.

The outcome of the stage goal.

The status associated with the person's stage goal.

Outcomes of each of the person’s goals, aims and targets. Includes comments recorded by the person, date and status.

The status associated with the person's overall goal.

Indicates whether the plan was discussed and agreed with the person or legitimate representative.

Indicates whether the plan was discussed and agreed with the person or legitimate representative.

The full name of the person in text representation.

The role the professional has in relation to the person.

A reference to the funding source and any conditions or limitations associated.

This is a record of the date that this care and support plan was last updated.

Reference other care planning documents, including the type, location and date.

This may include condition-specific plans, advance care plans, end of life care plan, etc.

This is the date/interval when this information will next be reviewed. SNOMED CT tag : - 425268008 |Review of care plan|.

This is a record of who has responsibility for arranging review of this information.

The name of the professional with responsibility for the care of the person.

The role the professional has in relation to the person e.g. GP, physiotherapist, community nurse, social worker, key worker, care home manager, care coordinator, LA hospital liaison person, care home contact, hospital clinician, Independent Mental Capacity Advocate (IMCA) etc.

Contact details of the professional (e.g. telephone number, email address etc.).

Signs to watch out for that may indicate a significant change in health or other circumstances. These could include physical health conditions, environmental factors, or mental health problems, (e.g. feeling anxious).

The name of the contingency plan.

Guidance on specific actions or interventions that may be required or should be avoided in specific situations. This may include circumstances where action needs to be taken if a carer is unable to care for the person. A statement of suggested actions. Usually expressed as: in the event of X do Y.

Who should be contacted in the event of significant problems or deterioration in health or wellbeing. e.g. name, role and contact details.

The name of the professional with responsibility for the care of the person.

The role the professional has in relation to the person e.g. GP, physiotherapist, community nurse, social worker, key worker, care home manager, care coordinator, LA hospital liaison person, care home contact, hospital clinician, Independent Mental Capacity Advocate (IMCA) etc.

Contact details of the personal contact (e.g. telephone number, address, email address etc.).

Indicates whether the plan was discussed and agreed with the person or legitimate representative.

Indicates whether the plan was discussed and agreed with the person or legitimate representative.

The full name of the person in text representation.

The role the professional has in relation to the person.

The date that this contingency plan was last updated.

This is the date/interval when this contingency plan will next be reviewed. SNOMED CT tag : - 425268008 | Review of care plan|

This is who has responsibility for arranging review of this information.

The name of the professional with responsibility for the care of the person.

The role the professional has in relation to the person e.g. GP, physiotherapist, community nurse, social worker, key worker, care home manager, care coordinator, LA hospital liaison person, care home contact, hospital clinician, Independent Mental Capacity Advocate (IMCA) etc.

Contact details of the professional (e.g. telephone number, email address etc.).

Details of coping strategies used.

The coping strategies are defined as thoughts and behaviours that people use to manage the internal and external demands of situations that are appraised as stressful. This should also include a record of any tools used to carry out the coping strategy.

The date when the coping strategy started.

The date when the coping strategy ended.

Details of the relapse indicators for the person. These may also be called 'early warning signs'.

Medicines or equipment available that may be required in specific situations and their location. A statement regarding the availability or location of the anticipatory medicines/equipment. SNOMED CT Tag : - 871021000000106 |Prescription of palliative care anticipatory medication|.

The name of the particular additional supporting plan, e.g. dietitian's plan, wound management plan, discharge management plan and behaviour support plan.

This is the content of any additional care and support plan, which the person and/or care professional consider should be shared with others providing care and support. May be structured in different ways, e.g. tables, diagrams, images. This is the content of any additional care and support plan, which the individual and/or care professional consider should be shared with others providing care and support. It should be structured as recommended for the care and support plan and if contains additional detail, it may be referenced here.

This is the date/interval when this information will next be reviewed. SNOMED CT tag : - 425268008 | Review of care plan|.

This is a record of who has responsibility for arranging review of this information. Should include their name, role and contact details.

The name of the professional with responsibility for the care of the person.

The role the professional has in relation to the person e.g. GP, physiotherapist, community nurse, social worker, key worker, care home manager, care coordinator, LA hospital liaison person, care home contact, hospital clinician, Independent Mental Capacity Advocate (IMCA) etc.

Contact details of the professional (e.g. telephone number, email address etc.).

This is a record of the date that this information was last updated.

This is an advance statement record entry. There may be 0 to many record entries under a section. Each record entry is made up of a number of elements or data items.

Whether the person has an advance statement.

The location of where the advanced statement is held.

Details of the person's, their family's or carer's involvement in advance care planning.

Advance care planning (ACP) is a voluntary process of person-centred discussion between an individual and their care providers about their preferences and priorities for their future care. ACP conversations are relevant for any individual who wishes to plan for their future care but should be offered to all patients considered to be approaching the end of life (last year of life). People may have different levels of preparedness for these conversations. Some may not yet have a clear idea of what matters to them for their future care. Some may not wish to discuss their future care and treatment, and this must be respected and clearly recorded. This can sensitively be revisited at a later stage.

Details of the person's, their family’s or carer’s involvement in advance care planning are recorded in this section of the standard using the appropriate data fields, using SNOMED CT concepts or free text where no codes are available. Where more than one person is involved then more than one record is made. The ‘Name ’ of the person involved, their ‘Relationship’ to the patient, their Role’ (if professional) may be recorded here.

This allows for the record to reflect that a patient has declined discussion around ACP, including why ACP conversations may be inappropriate at a particular time (e.g. fluctuating capacity).

The person, their legitimate representative, family member or carer involved in advance care planning.

The name of the personal contact.

The relationship the personal contact has to the person, e.g. father, grandmother, family friend etc. Includes additional roles the person performs on behalf of the other (e.g. carer, next of kin, emergency contact, dependent, etc.).

The role of the person involved in advance care planning.

Details of a person's palliative and end of life care plans.

The following plans: Advance Care Plan, Treatment Escalation Plan, Emergency Care and Treatment Plan, Recommended Summary Plan for Emergency Care and Treatment (ReSPECT) are included as part of the Palliative and End of Life Care Information Standard. This is not an exhaustive list and localities may choose to add other tools in use. Paper based versions of end of life care plans may be added to the clinical record as a separate document but it is recommended that services use SNOMED CT concepts to support information sharing between IT systems and to inform professionals of their existence. The advance care planning process is likely to involve a number of conversations over a period of time and plans may be revised and updated by different members of the multi professional team. Care must be taken to ensure that the record is reviewed and updated in a timely manner.

Advance Care Plan

It is important to specifically record that an individual has an advance care plan with the date the plan was created, any review date and if a particular individual has responsibility for the review, including their name, role, and contact details. 

The ‘Plan contents’ field can be used to record specific details or other supporting information about a person’s advance care plan.

‘Plan last updated’ should include the date the plan was created or last edited.

‘Planned review date’ should record the next date for review of the plan (if appropriate).

The data item ‘Responsibility for review’ includes details of the person with responsibility for reviewing the plan, their ‘Role’, ‘Grade’, ‘Specialty’, ‘Organisation’ and ‘Contact details’.

Treatment Escalation plan (ceilings of treatment)  

Treatment escalation planning is a clinician-led process, which is helpful when a person with serious illness has the potential for acute deterioration or may be coming towards the end of their life. It provides the opportunity for the clinician to agree a plan with the person, or if they lack capacity, with their Lasting Power of Attorney, advocate and those important to them, to guide decision making about what treatments the person would receive should their condition deteriorate.

The ‘Plan name’ is “Treatment Escalation Plan” with equivalent SNOMED CT concept recorded. 

In the ‘Plan contents’ field it is possible to record details on the ceilings of treatment and associated actions or give a brief description of the plan and if it is an attached document.

Other items ‘Plan last updated’, ‘Planned review date’ and ‘Responsibility for review’ are as described under ‘Advance Care Plan’ above.

Emergency Care and Treatment Plan (for palliative or end of life care)

Emergency Care and Treatment Plans can take the form of ‘in the event of X happening do Y’. The information may be particularly useful for professionals called in an emergency or due to sudden change in the condition of a patient e.g. a paramedic or Out of Hours GP where full access to the patient record may be limited. The plan may include guidance on specific interventions or actions that may be required or should be avoided in specific situations that may arise as a person’s illness progresses, e.g. seizures, bleeding, etc.

Priorities of care are expressed by the person who has capacity. Their priorities may include treatments that may prolong life or treatments to achieve a balance between getting better and ensuring good quality of life or treatments aimed at symptom control and providing comfort. 

The ‘Plan name’ is “Emergency Care and Treatment Plan” with equivalent SNOMED CT concept recorded. 

In the ‘Plan contents’ field it is possible to record priorities of care, anticipatory actions and more details about emergency treatment and care.

Other items ‘Plan last updated’, ‘Planned review date’ and ‘Responsibility for review’ are as described under ‘Advance Care Plan’ above.

Recommended Summary Plan for Emergency Care and Treatment (ReSPECT) 

The ReSPECT process creates personalised recommendations for a person’s clinical care and treatment in a future emergency in which they are unable to make or express choices. These recommendations are created through conversations between a person, their families, and their health and care professionals to understand what matters to them and what is realistic in terms of their care and treatment. A ReSPECT plan is created to summarise the recommendations agreed. (resus.org.uk/respect)

The ‘Plan name’ is “ReSPECT” with equivalent SNOMED CT concept recorded. 

If a patient has a ReSPECT plan, record its existence using the ‘Plan name’ and SNOMED CT concept and attach a copy of the document to the clinical record.

Record other data items such as ‘Plan last updated’ ,‘Planned review date’ and ‘Responsibility for review’ as described under ‘Advance Care Plan’ above.

Type of palliative care or end of life plan, e.g. Advance Care Plan, Treatment Escalation Plan, etc.

To record the details of a person's end of life plan. May include a person's wishes and preferences in their Advance Care Plan or a list of ceilings of treatment for Treatment Escalation Plan or priorities of care and anticipatory actions for an Emergency Care and Treatment Plan.

This is the date/interval when the end of life care plan will next be reviewed.

The professional responsible for reviewing the plan in the future.

The name of the professional.

The role the professional has in relation to the person e.g. GP, physiotherapist, community nurse, social worker etc.

The grade of the professional.

The specialty of the professional e.g. physiotherapy, oncology, mental health etc.

Professional identifier for the professional e.g. GMC number, HCPC number etc or the personal identifier used by the local organisation.

The details of the organisation providing the service.

The name of the organisation providing the service.

PRSB recommends use of Organisation Data Service (ODS) codes to retrieve organisation names, where available.

The Organisation Data Service (ODS) code (unique identifier) for the organisation providing the service.

Implementers are advised to review the key documents maintained and published by the ODS [ https://digital.nhs.uk/services/organisation-data-service ] including about the Data Search and Export Service [ https://digital.nhs.uk/services/organisation-data-service/data-search-and-export ] and FHIR R4 implementation guide [ https://simplifier.net/guide/organisation-data-services/Home?version=1.2.0-beta ].

Contact details of the personal contact (e.g. telephone number, address, email address etc.).

Whether a decision has been made; the decision; who made the decision; the date of decision; date for review and location of documentation. 

A DNACPR decision is an instruction to not attempt cardiopulmonary resuscitation. DNACPR decisions are designed to protect people from unnecessary suffering by receiving CPR that they don’t want, that won’t work or where the harm outweighs the benefits. In many areas decision making may be supported by recognised documentation, which may be included as part of the record. Where a CPR decision is made it is important to record who made the decision, the date of decision, date for review (if appropriate) and location of any documentation. The following information may be recorded as part of the information standard:

• The date when the cardio-pulmonary resuscitation decision was made.
• The value for CPR decision (SNOMED CT).
• The location where the cardio-pulmonary resuscitation decision was made.
• The professional who made the cardiopulmonary resuscitation decision and the organisation they work for.
• Details of the person completing the individual’s record on CPR decision. 

Patient records may have information regarding a person’s Cardio-Pulmonary (CPR) decision already recorded when implementing the standard. This information may not conform to the information model and value set defined in the standard. Migration of this data either by data mapping or manually will need to be supported prior to go live. Support for this process is out of scope for the standard.

The cardio-pulmonary resuscitation (CPR) decision.

Details of the person's, their family's and carer's involvement in the CPR decision.

Whenever possible the CPR decision must be made in consultation with the person. If the person cannot be involved because they are not able to make decisions for themselves, those close to them or their representatives must be involved in discussions to explore the person’s wishes, feelings, beliefs and values in order to reach a ‘best-interests’ decision. 

Details of the person's, family and carers involvement in the CPR decision are recorded in this section of the standard using the appropriate SNOMED CT concept or free text where no codes are available. Where more than one person is involved then more than one record is made with the appropriate SNOMED CT concepts.

The person, their legitimate representative, family member or carer involved in the CPR decision.

Name of the person involved in the decision.

The relationship the personal contact has to the person, e.g. father, grandmother, family friend etc. Includes additional roles the person performs on behalf of the other (e.g. carer, next of kin, emergency contact, dependent, etc.).

The role of the person involved in the CPR decision.

The date for review of CPR decision.

The professional responsible for reviewing the decision.

The name of the professional.

The grade of the professional.

The role the professional has in relation to the person e.g. GP, physiotherapist, community nurse, social worker etc.

The specialty e.g. physiotherapy, oncology, mental health etc

The details of the organisation providing the service.

The name of the organisation providing the service.

PRSB recommends use of Organisation Data Service (ODS) codes to retrieve organisation names, where available.

The Organisation Data Service (ODS) code (unique identifier) for the organisation providing the service.

Implementers are advised to review the key documents maintained and published by the ODS [ https://digital.nhs.uk/services/organisation-data-service ] including about the Data Search and Export Service [ https://digital.nhs.uk/services/organisation-data-service/data-search-and-export ] and FHIR R4 implementation guide [ https://simplifier.net/guide/organisation-data-services/Home?version=1.2.0-beta ].

Professional identifier for the professional providing the service e.g. General Medical Council (GMC), Nursing Medical Council (NMC) number etc, or the personal identifier used by the local organisation.

Contact details of the personal contact (e.g. telephone number, address, email address etc.).

The location of the CPR decision document.

Details of the person's estimated prognosis.

This allows for the recording of a person’s estimated prognosis. This is a clinical judgment indicating the anticipated period of time until death e.g., last days, last weeks, last months or year or more of life. An estimate of prognosis may support the patient e.g., application for benefits at a higher rate under ‘special rules’ through completion of a DS1500/SR1 form.

From July 2025 the SR1 form has replaced the DS1500 form.

Where a person is terminally ill this is a clinical judgment indicating the anticipated period of time until death e.g. last days, weeks, months or year of life.

Indicates if the person is on the palliative care register.

Early identification of people likely to be in their last year(s) of life provides opportunity for honest conversations about what matters to the person and facilitates care for them which is aligned to their needs and preferences. It can support an MDT approach to care that is coordinated between professionals and proactive to meet the changing need of the patient. A palliative care register, commonly used within primary care can be used to identify patients who may be in their last year(s) of life. It is recommended that (where possible) an explanation of this process is provided to the patient and their family/carer.  

This data item will enable the recording of a SNOMED CT concept indicating that the person is on the palliative care register and thus allow for the sharing of this information with other care providers.

Details of the availability or location of the person's anticipatory medicines/equipment.

Anticipatory prescribing for patients at the end of life is the prescription and dispensing of injectable medications to a named patient in advance of clinical need for administration by suitably trained individuals if symptoms arise in the final days of life. It is promoted to optimise symptom control in community settings to prevent crisis hospital admissions as it ensures rapid access to medications (particularly out of hours when sourcing of medication can be delayed) and enables administration to manage symptoms when needed. 

Information on the availability and location of the anticipatory medicines and equipment for end-of-life care can be recorded.

The data items also allow for the recording of SNOMED CT concepts that indicate there has been an issue and prescription of palliative care anticipatory medicines and equipment.

A statement regarding the availability or location of the anticipatory medicines/equipment.