Terms used about death and dying
- Advance Care Planning
- Advance Decision to Refuse Treatment
- Recommended Summary Plan for Emergency Care and Treatment (ReSPECT)
- End of life
- ‘Just in case’ medicines
- Lasting Power of Attorney (LPA)
- Life-limiting illness
Advance care planning
Advance care planning is thinking about, and planning for, how you would like to be cared for towards the end of life. In east Suffolk, a personal yellow folder called ‘My Care Wishes’ is available for everyone living with a long term or life-limiting (terminal) condition, and in north east Essex, we use the My Care Choices Record and Register. My Care Wishes and My Care Choices give you the opportunity to think about and record how you would like to be cared for as your condition progresses, in an urgent situation and as you approach your final days of life.
Visit the NHS Suffolk and North East Essex Integrated Care Board website for more information about the ‘My Care Wishes’ folder, or discuss with your GP or healthcare team:
For more information about My Care Choices, visit St Helena Hospice’s website or speak to your GP or healthcare team:
Advance Decision to Refuse Treatment (ADRT)
An ADRT, also referred to as a Living Will or an Advance Directive, is a written document that states any treatments you want to refuse in the future. It is only used if you are unable to express your wishes later on.
Visit the NHS website for more information:
ReSPECT stands for Recommended Summary Plan for Emergency Care and Treatment. It is a plan that is made between you and your healthcare team to guide future decisions about medical treatment in the event of an emergency. This form replaces the ‘Do not attempt cardiopulmonary resuscitation (DNACPR)’ form.
The aim of this change is to support a wider conversation between you and your healthcare team about your condition, your priorities for future care and what treatments may or may not be acceptable to you or helpful for you in the future.
Learn more about ReSPECT
A short film has been produced which goes through in more detail the importance of an Advance Plan and what filling in a ReSPECT form involves: RESPECT form – how to write an Advance Plan – YouTube
You can learn more about ReSPECT here: ReSPECT for Patients and Carers | Resuscitation Council UK
Information for health and care professionals
- ReSPECT for healthcare professionals | Resuscitation Council UK
- Professionals in Suffolk and north east Essex: ReSPECT – NHS Suffolk and North East Essex ICB
End of life
End of life is a term that refers to what is likely to be the last 12 months of a person’s life. However, at the appropriate time, it will be relevant for all patients who have a life-limiting (terminal) illness and/or are on palliative only treatment or care.
End of life care
End of life care focuses on helping you to live as well as possible until you die, and to die with dignity. The people providing your care should ask you about your wishes and preferences, and take these into account as they work with you to plan your care. They should also support your family, carers or other people who are important to you.
End of life care planning
End of life care planning involves looking at issues across areas of your life that are particularly significant as you reach the end of life. It includes legal and financial issues, planning your funeral and exploring the options about your care and where you would like to die.
‘Just in case’ or ‘anticipatory’ medicines
Sometimes prescribed in advance for symptoms that might present themselves in the future, ‘just in case’ medicines may be provided in a specially marked container called a ‘just in case’ box. Providing medicines in advance means that there is no delay in getting them when they might be needed quickly to help with symptoms. This may be particularly important for people who are not in hospital.
Visit the National Institute for Health and Care Excellence (NICE) website for more information:
- nice.org.uk – Medicines prescribed in advance (‘just in case’ medicines)
- A guide to anticipatory medications (north east Essex leaflet)
- A guide to anticipatory medicines and syringe pumps (north east Essex leaflet)
Lasting Power of Attorney (LPA)
An LPA is a legal document that lets you (the ‘donor’) appoint one or more people (known as ‘attorneys’) to help you make decisions or to make decisions on your behalf.
This gives you more control over what happens to you if you have an accident or an illness and cannot make your own decisions (you ‘lack mental capacity’).
There are 2 types of LPA:
- health and welfare
- property and financial affairs
You can choose to make one type or both.
Visit the NHS and Government websites for more information:
- NHS.uk – Giving someone power of attorney
- GOV.uk – Make, register or end a lasting power of attorney
Also referred to as a terminal illness, a life-limiting illness is a disease or condition that can’t be cured and is likely to cause death within a limited period of time. It can be difficult for doctors to predict how long someone will live for as it can depend on their diagnosis and any treatments they may be receiving. People with a terminal illness may live for days, weeks, months or sometimes years.
Some people may use different definitions, so it’s important to ask if you’re not sure what someone is saying or what it means.
Visit the Marie Curie website for more information.
If you have an illness that cannot be cured, palliative care will make you as comfortable as possible, by managing your pain and other distressing symptoms. It also involves psychological, social and spiritual support for you and your family or carers. This is called a holistic approach, because it deals with you as a “whole” person, not just your illness or symptoms.
Palliative care is not just for the end of life – you may receive palliative care earlier in your illness, while you are still receiving other therapies to treat your condition.
The NHS website has more information about end of life care: