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How to Manage Your End-of-Life Care

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You may wish to have control of your future medical treatment when you have lost mental capacity and cannot make your own decisions regarding your Will. 

What is an advance decision? 

An advance decision, if valid and applicable, is a legally binding document that can be created by a person who decides to refuse the giving or continuing of specific medical treatment if, in the future or at the time of the treatment, they have lost the relevant mental capacity to be able to consent to it. 

 The rules governing advance decisions are in Sections 24 – 26 of the Mental Capacity Act 2005 (MCA 2005). Prior to the Act, advance decisions were commonly known as advance directives or living wills. 

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How to manage your end of life care

The legal requirements of an advance decision

An advance decision must be made by a person who has reached the age of 18 and has full mental capacity when making the advance decision to be binding.

If there is any doubt whether the decision maker has the relevant mental capacity, a full written assessment by a qualified medical practitioner should be obtained.

A person is presumed to have mental capacity unless otherwise established, and the details of how a person lacks mental capacity are set out in Section 2 MCA 2005. The test for mental capacity is set out in Section 3 MCA 2005, which comprises the following elements:

  • to understand the information relevant to the decision,
  • to retain that information,
  • to use or weigh that information as part of the process of making the decision, and
  • to communicate his decision (whether by talking, using sign language or any other means).

It is important that the advance decision is specific to the medical treatment that will be refused in the future; otherwise, it may not be valid.

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The legal requirements of an advance decision

Advantages of creating an advance decision

  • Provides certainty that a decision maker's wishes will be followed when they have lost mental capacity.
  • A record of a decision-makers wishes which can still be considered by a healthcare professional even if the advance decision is not valid.
  • Has immediate effect if urgent action is required, for example, if incapacity of a person is forthcoming.
  • Can work in conjunction with a Health and Welfare Lasting Power of Attorney.

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Advantages of creating an advance decision

Disadvantages of creating an advance decision

  • There is no registration requirement which can lead to uncertainty about whether the advance decision exists.
  • There is a lack of formality or evidence, unless concerning life-sustaining treatment if such decisions are made orally.
  • Difficulties can arise in ensuring those decisions will be applicable if they reference a specific circumstance, but another one occurs. In that case, appointing a Health and Welfare attorney to make any decision is more flexible.
  • If the decision-maker's behaviour or actions are inconsistent with their wishes, then this may cause an advance decision to become invalid.

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Disadvantages of creating an advance decision

The effect of an advance decision

The advance decision will have effect as if the person had made it at the time with the relevant capacity.

A healthcare professional will no longer need to consider if any specified treatment is in the best interests of the decision maker, if an advance decision has been made, and will not be liable for holding back or withdrawing the treatment.

Suppose an advance decision is created after a Health and Welfare Lasting Power of Attorney. In that case, an advance decision will take priority over any decisions made by your attorneys (so far as they conflict with the advanced decision) concerning your healthcare.

To have effect, a decision-maker must not:

  • Withdraw an advance decision whilst the decision-maker still has the relevant mental capacity, and
  • Make a Lasting Power of Attorney for Health and Welfare (which usually invalidates an advance decision) to give your attorney(s) the legal authority to refuse or give specific medical treatment.

The effect of an advance decision made before the MCA 2005

If made before 1st October 2007 (when the MCA 2005 came into force), an advance decision will be determined by the common law rules before the Act came into force, which reflects the current legal position of the MCA 2005.

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The effect of an advance decision

Limitations of an advance decision

An advance decision cannot be used to:

  • Refuse actions that constitute basic or essential care, e.g. warmth, shelter or the offering of food or drink.
  • Request particular medical treatment as they can only refuse specific treatment.
  • Request or authorise illegal acts, for example, assisted suicide or any action that expresses the aim of ending life.
  • Refuse treatment for a mental disorder if someone is receiving compulsory treatment or is subject to detention.

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Limitations of an advance decision

How to create an advance decision?

An advance decision can be made either orally or in writing. The Mental Capacity Act 2005 Code of Practice's recommendations provide guidance regarding what should be included in an advance decision.

If the decision is to life-sustaining treatment, additional requirements must be followed; for example, it must be in writing, signed by a decision-maker and witness and include a verification statement.

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How to create an advance decision

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To ensure that an advance decision meets your current circumstances, it is important to review it regularly to ensure that it remains valid and applicable. If you would like our assistance to ensure that all the statutory requirements for a valid advance decision are met, please contact our Wills, Trusts, and Probate team on: 

0161 941 4000