Resources & Glossary of Terms
Resources
Conversational tools
RED-MAP guide for community professionals
Conversation prompts using the RED-MAP framework
‘What matters to me’ conversations
These ‘what matters conversations’ resources were developed by some 25 organisations, charities and societies that have been meeting regularly since March 2020, under the umbrella of the Royal College of General Practitioners, to discuss ways of optimising palliative and end of life care. The group wish to encourage lifelong conversations around what is important to you now and in the future. We are linking to these resources with kind permission from the ‘what matters conversations’ group.
A short video to encourage open conversations about person-centred healthcare and advance care planning
A short video from the perspective of professionals, with examples from clinical practice of how this approach can be incorporated into busy daily practice
SBAR (Situation, Background, Assessment, Recommendation) communication tool
A communication tool that enables information to be transferred accurately between individuals and has been successfully used in many different healthcare settings
Advance care planning tools and templates
RED–MAP framework
How to structure an advance care planning conversation
My future wishes plan
Easy read advance care planning booklet (England and Wales)
Your life and your choices: plan ahead
The booklet explains how you can plan ahead for your future care in Northern Ireland
Advance care planning – Marie Curie
Video on advance care planning in 5 steps
Planning Ahead
Macmillan cancer support
AIIHPC
Palliative Care Competence Framework for Nurses
End of life care
Information and resources for planning ahead
Planning for your future – advance care planning – Dementia UK
Advance care planning guide and template
Addressing Goals of Care
Addressing Goals of Care using the REMAP tool
Universal Principles of advance care planning
NHS England Document
Healthcare Improvement Scotland iHub
Anticipatory Care Planning policy and tool kit
Supportive & Palliative Care Resources
SPICT™ resources
A range of resources about palliative and end of life care for health and social care professionals, including advice on communication and future care planning.
National Ambitions End of Life Care Framework
National Framework for Palliative and end of life care
Emergency Care Planning
Resuscitation Council UK: CPR Decisions, DNACPR & ReSPECT
Guidance on DNACPR decisions
ReSPECT documentation
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
Advance care planning legislation
Advance care planning policy – England and Wales
Legislation which covers England and Wales
Advance care planning policy – Northern Ireland
Legislation which covers Northern Ireland
Advance care planning: For Now and For The Future (2022)
Policy document for NI
Scotland (Healthcare Improvement Scotland)
Legislation for Scotland
Mental Capacity Legislation
Mental Capacity Act 2005
Legislation which covers England and Wales
Legislation which covers Northern Ireland
Adults with Incapacity Act 2000
Legislation which covers Scotland
Human Rights
End of Life Care & Human Rights: A practitioner’s Guide
British Institute of Human Rights – Guide to Human Rights at the End of Life
Mental Health, Mental Capacity: My human rights
Booklet on mental health, mental capacity and human rights
Self-care and wellbeing information
Doing what matters in times of stress
A stress management guide for coping with adversity
Mindfulness
Information about mindfulness practice
How to fall asleep faster and sleep better
Information about sleeping better
Couch to 5k – week by week
A guided training plan for physical fitness
Meditation and sleep made simple
An app to support with sleep and relaxation
Coping and self-care
Self-care ideas with links to resources
Resilience Resource
Developed by researchers at QUB for care home staff
Grief support
Grief Chat
An online support service for those experiencing grief
cruse.org.uk
Provides free support, advice and information for adults, children and young people. National Freephone Helpline: 0808 808 1677. Opening hours Monday-Friday, 9.30am-5.00pm (excluding bank holidays), with extended hours on Tuesday, Wednesday and Thursday evenings until 8pm. Weekends 10am-2pm Cruse Bereavement Care (England, Wales, Northern Ireland)
Cruse (Scotland)
Freephone Helpline: 0808 802 6161. Opening hours Monday-Friday, 9.30am-8pm. Weekends 10am-2pm
Storing Advance Care Plans
Electronic Care Record
Northern Ireland
Key Information Summary
Scotland
Summary Care Record
England
Individual Health Record
Wales
Resources embedded within content
NMC’s reflective accounts
Glosssary of Terms
Throughout this resource we use a number of technical terms associated with advance care planning. These can mean different things to different people, so we have provided interpretations of these below. Take a few moments to familiarise yourself with these.
Advance care planning
The process of making decisions about future care options and preferences. This may also be called future care planning or anticipatory care planning.
Advance care plan
A record of an advance care planning discussion that contains information about what care and realistic treatment someone would like to receive and in what circumstances.
Mental capacity
A legal term which is used when a person is declared able to make their own decisions, including about their own care and treatment. Capacity is decision-specific, and people must be assumed to have capacity and given every opportunity to engage in shared decision making.
Statement of wishes and preferences for care
An overview of the day-to-day needs and preferences of an individual’s care. This forms part of the advance care plan.
Emergency care plan
Contains details of the care and treatment an individual would prefer, and wishes to refuse, in an emergency. This forms part of the advance care plan.
Best interests decision making
When a decision is made on behalf of an individual who lacks capacity to make their own decisions, with their best interests in mind.
Do Not Attempt Cardiopulmonary Resuscitation
Often shortened to DNACPR or sometimes Do Not Attempt resuscitation (DNAR). This is a pre-recorded decision to not receive cardiopulmonary resuscitation. It is not a legally binding document but is a record of an individual’s wishes regarding resuscitation. (DNACPR is discussed further in Unit 3).
Advance Decision to Refuse Treatment (ADRT)
This is a legally binding document in England, Wales and Northern Ireland which outlines treatment that is not wanted, and under what circumstances. This is referred to as an advance directive in Scotland.
Power of attorney
When a representative, for example a family / carer, is legally appointed to act on behalf of another person. In some regions of the UK Power of Attorney is split into decisions about financial matters and/or welfare. It is important to clarify whether Power of Attorney is for financial matters and/or welfare as a financial Power of Attorney may not have legal powers to decide about health and welfare issues.
It is also important to ask for original or certified copies of Power of Attorney documents and to clarify whether authority has been granted for the attorneys to refuse life sustaining treatment e.g., DNACPR.
Digital Legacy
Digital legacy is a relatively new concept important for consideration within the ACP process. Digital legacy refers to the online information that is available about a person after they have died, for example, social media accounts. A recent study suggests that ‘managing an individual’s digital belongings is as important as their physical belongings’, but education is necessary to improve knowledge and understanding of digital legacy by healthcare professionals (Stanley et al, 2023). Discussion of an individual’s digital belongings/legacy may also offer a ‘non-threatening’ approach to initiating ACP conversations. You can find out more about the concept of digital legacy here.
References
Gibbs G (1988). Learning by Doing: A guide to teaching and learning methods. Further Education Unit. Oxford Polytechnic: Oxford.