Living Wills

 

Advance decisions, advance statements and living wills

A “living will” is a statement about how you would or would not like to be medically treated if you are unable to make decisions yourself in the future. Advance decisions and advance statements are formal names for the 2 different types of ‘living will’.

1 Advance decisions under the Mental Capacity Act

The Mental Capacity Act 2005 empowers people to make their own advance decisions to refuse treatment, including refusal of life-sustaining treatment.

2 ‘Living wills’

When you are ill, you can usually discuss treatment options with your G.P and then jointly reach a decision about your care. However, if you are admitted to hospital when unconscious or unable to make your own decisions about your treatment or communicate your wishes (e.g. if because of a car accident, a stroke or develop dementia) you ‘lack mental capacity’ which means the doctors have a legal and ethical obligation to act in your best interests. One exception to this is if you have made an advance decision refusing treatment meaning medical professionals providing your care are bound to follow it – whether or not they think it is in your best interests. The term ‘living will’ doesn’t have a legal meaning but can be used to refer to either an advance decision or an advance statement. An advance decision is a decision to refuse treatment; an advance statement is any other decision about how you would like to be treated. Only an advance decision is legally binding, but an advance statement should be taken into account when deciding what is in your best interests.

3 What is an advance statement?

This is a general statement of your wishes and views. It allows you to state your preferences and indicate what treatment or care you would like to receive should you, in the future, be unable to decide or communicate your wishes for yourself. It can include non-medical things such as your food preferences or whether you would prefer a bath to a shower. It could reflect your religious or other beliefs and any aspects of life that you particularly value. It can help those involved in your care to know more about what is important to you. It must be considered by the people providing your treatment, when they determine what is in your best interests, but they are not legally bound to follow your wishes. Advance statements can also be used to let the people treating you know who you would like to be consulted when a decision has to be made, if you are unable to make that decision yourself. If you create a Lasting Power of Attorney (LPA), you could record an advance statement in the LPA document. An LPA can be used if you want to give someone else, or more than one person, the power to make decisions about your care and treatment if you are not able to do so yourself. Your attorney must take your advance statement into account when deciding what is in your best interests.

4 Why make an advance decision?

You may have been told that you have a terminal illness or form of dementia. You may wish to prepare an advance decision indicating the type of treatment you would not want to receive in the future. Making an advance decision may give you peace of mind knowing that your wishes should not be ignored if you are unable to take part in the decision-making process at the relevant time. Considering making an advance decision provides an opportunity to talk to and ask questions of your doctors during the early stages of an illness rather than delaying it until it is more difficult to participate. It can also provide an opportunity to discuss what may be difficult issues with family and friends.

5  What is an advance decision to refuse treatment?

An advance decision to refuse treatment is the only type of living will that is legally binding. An adult with mental capacity can refuse treatment for any reason, even if this might lead to their death. However, no one is able to insist that a particular medical treatment is given, if it conflicts with what the medical professionals providing the treatment conclude is in the patient’s best interests. This is why an advance decision can only be a refusal of treatment. An advance decision to refuse treatment must indicate exactly what type of treatment you wish to refuse and should give as much detail as necessary about the circumstances under which this refusal would apply. An advance decision can only be made by someone over the age of 18 who has the mental capacity to make the decision. This means they must be able to understand, weigh up and retain the relevant information to make the decision to refuse treatment; and they must then be able to communicate that decision.

How to make an advance decision to refuse treatment (non life sustaining)

An advance decision does not have to be in writing, unless it is a decision to refuse life-sustaining treatment. Always discuss these issues with your G.P who will be a valuable source of expert advice. To avoid uncertainty over the validity of an advance decision you should:

  • Put the decision in writing.
  • Include your name, date of birth, address and details of your GP.
  • Include a statement that you wish the advance decision to apply if you lack the capacity to make the decision yourself at the relevant time.
  • Specify what kind of treatment is to be refused and in what circumstances, giving as much detail as possible.
  • Sign and date the document.
  • Ask someone to witness your signature.
  • You could ask your doctor to sign a statement on the document stating that they have carried out an assessment of you and, in their opinion; you have the mental capacity to make the decision.

How to make an advance decision refusing life-sustaining treatment?

If you want to make an advance decision to refuse life-sustaining treatment, it must meet certain requirements set out in the Mental Capacity Act. Life sustaining treatment could include artificial nutrition and hydration to someone who cannot eat or drink by mouth. The legal requirements for a valid advance decision to refuse life-sustaining treatment are as follows.

  • The decision must be in writing. You can ask someone else to write it down if you can’t do it yourself.
  • You must sign the document. You can instruct someone to sign it on your behalf in your presence if you can’t sign it yourself.
  • Your signature (or the signature of the person signing on your behalf) must be witnessed. The witness must also sign the document in your presence.
  • You must include a written statement that the advance decision is to apply to the specific treatment even if your life is at risk.

6 Deciding if an advance decision is valid and Applicable

You should take steps to make sure that the people providing your treatment will be aware of your advance decision at the relevant time. If the person providing your treatment is aware of your advance decision, they must then consider whether it is valid and applicable to the particular circumstances by considering:

  • if you have withdrawn the decision since you made it, at a time when you had the mental capacity to do so
  • if you have done anything which is inconsistent with the decision and suggests that it no longer represents your wishes or
  • if you have since made a Lasting Power of Attorney, giving someone else the authority to make the decision consenting to or refusing the particular treatment.

When deciding whether an advance decision is applicable to the particular circumstances, the person providing the treatment must:

  • assess whether you actually still have mental capacity (the advance decision will only be relevant if there is evidence that this is not the case)
  • check that the treatment and circumstances are the same as those referred to in the decision
  • Consider whether there are any new developments that you did not anticipate when you made your decision e.g. new medical treatment or changes in your personal circumstances.

Professionals are protected from liability if they reasonably believe there is a valid and applicable advance decision. They can also provide treatment if they are in doubt over the existence, validity or applicability of an advance decision.

7 An advance decision cannot be used to:

  • Ask for anything that is illegal such as euthanasia or help to commit suicide
  • Demand care the healthcare team considers inappropriate in your case
  • Refuse the offer of food and drink by mouth
  • Refuse the use of measures solely designed to maintain your comfort such as providing appropriate pain relief, warmth or shelter
  • Refuse basic nursing care that is essential to keep you comfortable such as washing, bathing and mouth care.

8. Lasting powers of attorney

The Mental Capacity Act brings in a new system of Lasting Powers of Attorney (replacing the Enduring Power of Attorney). An Enduring Power of Attorney could only relate to your financial affairs, whereas there are 2 types of Lasting Powers of Attorney (LPA) – a LPA property and affairs and a LPA personal welfare. If you set up an LPA personal welfare, you can choose who should make decisions about your care or treatment if you are not able to do so yourself. There is a section in the personal welfare LPA document where you can specify if you want your attorney to have the power to make decisions about life-sustaining treatment. If you have made an advance decision refusing treatment this will become invalid if you later create a personal welfare LPA giving someone else the power to refuse medical treatment on your behalf. If you make an advance decision after creating a personal welfare LPA, this will overrule the LPA.

9. Dealing with disagreements about an advance decision

If there is a dispute over this, an application can be made to the Court of Protection which can make a declaration on:

  • whether the person has mental capacity to make the decision themselves
  • whether the advance decision is valid
  • whether the advance decision is applicable to the particular treatment and circumstances.

10. Useful organisations

Alzheimer’s Society

The society produces a free information sheet and guidance on preparing an advance decision. This information sheet together with a sample advance decision form can be downloaded from their website. Devon House, 58 St Katherine’s Way, London E1W 1JXHelpline: 0845 300 0336 Tel: 020 7423 3500  Email: enquiries@alzheimers.org.ukFactsheet 72  October 2010 13 of 16

MIND (National Association for Mental Health)

Offers support for people in mental distress and their families. Advice line: 020 8519 2122;Mindinfo line: 0845 766 0163

Office of the Public Guardian

The OPG publishes the Code of Practice to the Mental Capacity Act. The Code of Practice provides guidance on Advance Decisions and other areas of the Mental Capacity Act and can be downloaded from the OPG website. It can also be ordered from the Stationary Office for £15 by calling their order line 0870 600 5522 or ordering through their online shop www.tsoshop.co.ukA series of six Mental Capacity Act booklets is available to download from the additional publications section of OPG website. PO Box 15118, Birmingham B16 69X; Tel: 0845 330 2900;

Patients Association 

The Association produces information for patients on living wills. PO Box 935, Harrow, Middlesex HA1 3YJ. Tel: 0845 608 4455;

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