Information for patients, relatives and carers
This webpage aims to answer common questions about why you may choose to make decisions about care and treatment in advance and the different ways this can be done.
Why does thinking ahead matter?
Serious illness and ageing bring challenges that many of us prefer to avoid thinking about. At the same time many of us fear loss of control about decisions relating to our health care. If there comes a time when you are unable to speak for yourself and nobody is aware of what is important to you, your preferences and choices may not be taken into consideration.
What is advance care planning (ACP)?
Advance care planning is a voluntary discussion about possible future treatments and care between you and any professionals involved in your care. Ideally this would also include those important to you. These discussions may take place when you are diagnosed with a life limiting condition, when your condition begins to deteriorate or when you are in good health but thinking about what treatment and care you might need in the future.
Staff often use a document called Proactive Enhanced Advance Care Escalation (PEACE document or a RESPECT document) to record advance care plans in a structured way.
What types of things are included in ACP?
Advance care plans may include decisions about which types of medical treatments you may be offered, and those you would prefer not to have, as well as aspects of care that haven’t yet been considered. The discussion will vary depending upon your individual situation, but may include:
- how to manage common things that may be expected to happen related to your conditions or illnesses (such as infections, falls, managing breathlessness symptoms for example)
- where you would prefer to have such issues managed
- decisions around cardio-pulmonary resuscitation (CPR)
Plans also include information about your future wishes and preferences, for example:
- what is important in your day-to-day life, what matters most to you
- where you would like to be cared for if you become less well
- information about others who are involved in your care, such as relatives/carers
- values and beliefs
- priorities in relation to maximising your quality of life e.g. spending time with family
Not all aspects have to be considered at once. It is important you take time to discuss your wishes and preferences, involving those important to you, and your healthcare team. Once you are happy with your wishes and preferences, for your whole journey including the time when you may be nearing the end of life, it is important they are recorded. This will ensure that anyone who provides care for you in the future is aware of them.
Where are ACP’s recorded?
Advance care plans are all kept in a single register called the Electronic Palliative Care Coordinating System register (EPaCCS). This is hosted within a clinical system called SystmOne, used by a number of clinical services within mid and south Essex and accessible via a secure Health and Social Care Network (HSCN).
Having a single register means your wishes, priorities and needs are easily accessible and visible to all health and social care staff involved in your care. This helps deliver better coordinated care to you from any teams or professionals enabling them to deal with any of your changing needs or circumstances more efficiently, aligned to your personal choices or goals.
Only professionals delivering care to you can access it from your usual records, any hour of the day or night, so you can be confident that everyone looking after you knows what care you want. All of the different teams, services and providers will be more aware of and better informed about your conditions, type of illnesses, stage of those illnesses and your personal priorities and choices.
Advance care planning is completely voluntary and is not legally binding. It enables all professionals who may be involved with your care, to respect your feelings and wishes for your care especially if you may have lost the ability to communicate at the time, including for the time you might die.
Can I change my mind once my wishes have been recorded?
Of course. Wishes and preferences should be reviewed regularly with those close to you and your health care team. You can change your mind at any time.
What do I do next if I am interested in ACP?
Please talk to your hospital team or GP who will support you with the advance care plan and can signpost you to the other documents mentioned in this leaflet if required.
Additional information: lasting power of attorney (LPA)
A lasting power of attorney (LPA) is a legal document that lets you nominate representative(s) to make decisions on your behalf. A LPA is not valid and has no legal standing until it has been registered with the Office of the Public Guardian.
Registration must take place while you have the mental capacity to do so. More information can be found on this website.
There are two different types of LPA:
1) Property and financial affairs – this covers money and property. You can choose when this is active, either as soon as it’s registered or only after you have lost mental capacity.
2) Health and welfare – this covers personal and health care decisions including refusing any medical treatments you may need to stay alive. It only becomes active once you have lost the mental capacity to make decisions for yourself.