Living Will Help Section B: Advance Decision

complete and sign with careful consideration.

An Advance Decision is legally binding. It expresses a desire to refuse life-sustaining treatment or resuscitation under certain highly specific circumstances.If a Doctor considers that you have prepared a valid Advance Decision then you may not be provided with medical treatment that would otherwise have been recommended.

This will have the result of shortening life. Because of the terminal consequences of withholding treatment, the law requires that advance decisions are highly specific. The relevant legal provisions dealing with Advance Decisions are set out within sections 24-26 of the Mental Capacity Act 2005. We summarise the impact of those sections below.

Withdrawing or Changing an Advance Decision

As long as a person has capacity they can withdraw (cancel) or revise an Advance Decision at any time. The Act does not require any withdrawal or change to be in writing but if possible we recommend that withdrawal of or changes to an Advance Decision are made in writing so as to remove any uncertainty. Those changes would have to be witnessed in the same way as the original Advance Decision – details are set out below.

Capacity

You will see that an Advance Decision can only be made by someone who has “capacity” to make the decision.  Capacity is a legal term defined by section 3 of the Act.  In order to have capacity to take a particular decision, a person must be able to:

  1. understand the information relevant to the decision
  2. retain that information
  3. use or weigh that information as part of the decision-making process
  4. communicate that decision

Capacity is “issue specific”, meaning that whether a person has capacity will depend upon the type of decision he is taking.  For example a person with a mental disease or impairment may have capacity to take basic decisions as to what clothes they wear or what they should eat but may not have capacity to decide about more complex matters such as financial investments or end of life care.

Because a decision refusing end of life treatment is very serious, the Courts require that a person should have a very clear understanding of all the relevant issues when making an Advance Decision and that the Decision is very specific both as to the treatment that is to be refused and the circumstances in which that treatment is to be refused.

An Advance Decision will only be binding upon a doctor if the doctor is satisfied that the person had capacity at the time he made the Advance Decision.  If there is uncertainty about the validity of an Advance Decision then a doctor is entitled to provide treatment whilst clarification is sought.  This may result in a Court being required to investigate the issues.

In order to reduce any uncertainty about the validity of an Advance Decision you should arrange an appointment with a medical practitioner who knows you and who can sign the certificate of capacity at Document X.  That medical practitioner could be your general practitioner or, if you are suffering from some illness and are under specialist care, it might be a consultant or specialist dealing with your ongoing or planned treatment.

Where the effect of an Advance Decision is to refuse treatment that would prolong your life, it will be important to demonstrate that you understood all the relevant details and information regarding the treatment options, their consequences, the consequences of withholding treatment and the prospects of new treatments becoming available.  It is easier to demonstrate your understanding of all these matters if a medical professional signs the certificate of capacity and can confirm that he has discussed all the relevant matters with you.

It is a requirement of the Advance Decision that you specify clearly both:

(a)  the circumstances in which treatment is to be withheld or discontinued; and

(b)  the treatment  that you wish to be withheld or discontinued.

It will be easier to provide the necessary level of specificity if you discuss the matters with your GP or specialist.

Reviewing an Advance Decision

You are advised to review an Advance Decision regularly and to record the fact of that review in writing and to have it witnessed.    This is not a requirement of the Act but it will reduce uncertainty and it will provide reassurance for doctors who are shown your Advance Decision that the Decision is a proper and recent statement of your views about treatment.  Your personal circumstances and health are likely to change and such changes may well have an effect upon a decision to refuse treatment.  If an Advance Decision is written some long time before the question of treatment arises and there is no evidence of a review in the interim, a doctor may have concerns that you no longer considered the decision applied to the circumstances that have arisen.  Just as there is no requirement to review a decision, there are no pre-determined intervals for review.  However, it would be sensible to review an Advance Decision annually or when there are changes in your personal circumstances or health.  If you suffer from an illness then it would be sensible to review the Decision and to discuss it with your treating clinicians before you embark upon any new course of treatment.  With new or different treatment options, you will need to include those new circumstances or treatment options in any Advance Decision if it is to be binding upon those treating you.

We summarise the relevant sections of the Mental Capacity Act 2005 that deal with Advance Decisions below:

Section 24

–               An Advance Decision can only be made by someone with capacity and over the age of 18.

–               In an Advance Decision a person states that if at some future date when he lacks capacity, a healthcare provider intends to give him treatment, then in specific circumstances defined within the Advance Decision, that treatment should be withheld or (if it is already being provided) discontinued.

–               The Advance Decision does not need to be drafted in a technical way but it must be clear, specific and unambiguous.

–               Anyone who makes an Advance Decision can change or withdraw that decision whilst they have capacity.

 

Section 25

–               An Advance Decision is not valid if the person making it:

  • Withdraws it whilst they had capacity; or
  • Has, after making the Advance Decision, created a lasting power of attorney under which they confer authority to someone else to give or refuse the treatment to which the Advance Decision relates; or
  • Has done anything else clearly inconsistent with the Advance Decision remaining his fixed decision

–               An Advance Decision is inapplicable if at the material time (when the decision about the provision or withholding of treatment is being taken), the person taking the decision has capacity to give or refuse consent to treatment

–               An Advance Decision is not applicable to the treatment in question if

  • That treatment is not the treatment specified in the Advance Decision; or
  • The circumstances specified in the Advance Decision are absent; or
  • There are reasonable grounds for believing that circmstances exist which the person making the Advance Decision did not anticipate when the decision was made and which would have affected his decision had he anticipated them

–               An Advance Decision is not applicable to life-saving treatment unless

  • The decision is confirmed by a statement from the person taking the decision  that it is to apply to that treatment even if life is at risk; and
  • The Advance Decision and the statement referred to above are:
    • In writing; and
    • Signed by the decision maker or another person authorised by him and in his presence; and
    • The signature is made or acknowledged by the decision maker in the presence of a witness; and
    • The witness signs or acknowledges his signature in the decision maker’s presence

Section 26

–               If a person has made an Advance Decision which is valid and applies to a treatment then that decision has effect as if he made it and had had capacity to make it at the time when the question arises as to whether the treatment should be carried out or continued

–               A Court may determine whether an Advance Decision (i) exists; (ii) is valid; (iii) applicable to a treatment.

 

The Code of Practice

There is a Code of Practice to the Mental Capacity Act 2005 that tries to explain the Act in words that are easy to understand.  The section dealing with Advance Decisions is at Chapter 9 of the Code (pg 159).  We attach that Chapter at the end of this document.  It is also available on the internet (http://webarchive.nationalarchives.gov.uk/+/http:/www.justice.gov.uk/docs/mca-cp.pdf ) and on our own website at www.uklivingwillregistry.co.uk

 

The Advance Decision

The Advance Decision that is prepared in this documentation provides you with options for which life-sustaining treatments you would wish to refuse under certain circumstances. Life-sustaining treatment may include artificially enabling you to breathe. Resuscitation may include the restoration of your heartbeat.

Examples of treatment to be refused (is it important to discuss these with your GP or other Health Care Provider):

  1. Artificial ventilation if I can no longer breathe unassisted
  2. Artificial resuscitation in the event of cardiac arrest
  3. Artificial feeding, whether into the stomach or a vein unless such treatment is anticipated to be for a limited period only to allow me to overcome some treatment or procedure that is not within the terms of this Advance Decision and excluded.
  4. Invasive surgery
  5. Dialysis
  6. Blood transfusions

 

You may choose to refuse all of them. You may choose to revise the form so that additional treatments or option are specifically referred to.  It is important to discuss these options with your GP or any other Health Care Provider, to ensure you understand the purpose of each treatment, and the implications of refusing it.

For all the reasons set out above the very grave implications of a valid Advance Decision mean that you must ensure Section B: Advance Decision is signed and witnessed.