Planning ahead provides peace of mind for end-of-life care

By Usha Grieve

Planning ahead for end-of-life care may not have been many people’s New Year’s resolution, but the recent publication Planning ahead: making choices for the end of life from the charity Compassion in Dying aims to raise awareness of the importance of setting out your views and wishes in advance.

All too often Compassion in Dying’s information line receives calls from family members of an individual who has lost capacity, for example, due to dementia or an injury. They know what treatment their loved one would have wanted to refuse or consent to in these situations, but without an advance decision (also called an advance decision to refuse treatment, an ADRT, or a living will), or a lasting power of attorney for health and welfare (LPA), there is no formal recourse for the individual’s wishes to be respected, and therefore treatment decisions will be made by doctors.

As well as potentially denying the autonomy of the person who has lost capacity, these situations can make a bad situation worse for family members and friends struggling to understand how medical decisions will be made.

Number of options

There are a number of options for individuals wanting to take steps to ensure their wishes are respected in the future. The simplest is to make an advance statement (sometimes called a statement of wishes). This is a general statement about anything that is important to them in relation to their future care and well-being. It can be used to express preferences for care or to detail any values or beliefs that inform the decisions they make. Although an advance statement is not legally binding, it does have legal standing because it must be taken into account when deciding what is in the person’s ‘best interests’.

The two more formal options are an advance decision and an LPA. Both have legal force under the Mental Capacity Act 2005 which means that the individual has the final say about what is in their best interests, rather than the professionals providing care.

An advance decision allows someone to make a legally binding refusal of medical treatment in advance of a time when they don’t have capacity to refuse. It can be used to set out the specific circumstances in which they would not want a treatment to be given, or in which they would want a treatment to be stopped (for example if they had reached a certain point in their illness, or were in a persistent vegetative state). It can be used to refuse any treatment, including life-sustaining treatment such as CPR, breathing machines, antibiotics or feeding tubes.

Legally binding

As long as an advance decision is valid and applicable then any refusal of treatment within it is legally binding in England and Wales. This means that if a doctor was to knowingly ignore an advance decision they could face criminal prosecution or civil liability.

A health and welfare LPA allows a person to give one or more trusted people the legal power to make decisions on their behalf. An attorney can make decisions about anything to do with the person’s health and welfare such as refusing medical treatment, where they are cared for and the type of care they receive, as well as day-to-day things like diet, dress and daily routine. As with the advance decision, it only comes into effect once the person loses capacity.

There are some key things to consider when deciding between an advance decision and an LPA. An advance decision is only applicable to the specific treatments and circumstances that the person details within it. It will not apply if someone finds themselves in circumstances they did not envisage at the time of writing. An LPA is more flexible because, should a person lose capacity, their attorney will be able to make any health and welfare decisions on their behalf.

An advance decision comes into effect as soon as it has been signed and witnessed correctly, whereas an LPA is only valid once it has been registered with the Office of the Public Guardian, which can take up to eight weeks. Also, anyone can make an advance decision for free. An LPA currently costs £110 to register, although those on a low income or certain benefits are exempt from these fees.

It is possible to complete all three options, however it’s important to remember that if someone makes both an advance decision and an LPA, the one made more recently takes legal precedence for dealing with the decision in question.

Why plan ahead?

An advance decision, LPA or advance statement is a direct communication between the person making it and the doctors and professionals caring for them. It allows the person to speak for themselves and means that other people will not have the responsibility of making life and death decisions on their behalf.

It can also make things easier for family and friends because it helps them to understand what their loved one wants when they are nearing the end of life. The process of planning ahead can also help to open up a dialogue about people’s wishes for the future, helping to initiate what can sometimes be a difficult conversation.

Usha Grieve is information strategy manager at Compassion in Dying

* For a free copy of Planning Ahead  email info@compassionindying.org.uk. For more information on planning ahead options call Compassion in Dying’s information line on 0800 999 2434.