Understandably it can be daunting to make plans for end-of-life care. However, planning ahead can help reassure you and the person you are caring for that their wishes will be followed. It helps you and the person you care for feel more in control and creates a sense of comfort when looking towards the future. Additionally, it will benefit you and your wider family, helping avoid a lot of anxiety and potential family disagreement later on.
Here is some practical information that can be valuable when thinking about end-of-life care:
It is critical to recognise when the individual you care for may lack decision-making capacity.
Mental capacity is about being able to make your own decisions and is decision and time specific.
The person you care for will will lack mental capacity to make a decision at a particular time if they have an “impairment or disturbance of the mind or brain” for example, they have dementia or a stroke.
It is important to understand that just because someone intends to make a decision with which you disagree with or believe is unwise, it does not mean they are unable to make a decision.
Questions to ask
Consider the following points while discussing future planning with the person you are caring for:
– Where do they want to be cared for in the future?
– Who do they want to spend time within the future?
– Would they like to appoint someone to make decisions on their behalf if they lack the mental capacity to do so?
– Do they have any requests when it comes to planning their funeral? E.g., whether they want a religious service or not
– Are there any additional practical considerations they should bear in mind? E.g., pet care, handling of bank accounts
In the event that the person you care for becomes ill and requires care and treatment, an advance statement allows them to record their wishes, beliefs, and values such as where they wish to be cared for. Anyone making a decision on behalf of the individual must consider this statement.
The statement does not need to be signed, but a signature would be preferable to link the person to the words written.
Advance Decision to Refuse Treatment (ADRT)
Advance Decision to Refuse Treatment (ADRT) is a written statement of wishes the person you care for has to refuse a particular treatment in a particular situation. This can be valuable in making sure that everyone knows what treatments are not wanted if the person becomes unable to communicate this.
It does not cost anything to produce a ADRT, and a solicitor is not required.
– Please see the NHS End of life Care guide for more detailed information on planning for end-of-life care.
– Dying Matters is a charity that aims to help people talk more openly about dying, death and bereavement, and to make plans for the end of life. They provide of useful resources from detailed leaflets to podcasts.
– My future wishes focuses on advance planning for people living with dementia.
Working for Carers is a London-wide project that supports unpaid carers, aged 25 or over, to move closer to employment. The project is led by Carers Trust and delivered by its network of partners across London. Working for Carers is funded by the European Social Fund and The National Lottery Community Fund.