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This information is for people who want to know more about an advance decision to refuse treatment, which is sometimes called a living will or advanced directive.
An advance decision to refuse treatment is a set of instructions from you to your medical team. It sets out the specific circumstances in which you would:
It’s likely that you’ve been involved in making decisions throughout your cancer treatment|. It’s not unusual to think about your future and the kind of care you may possibly need later, if and when your condition changes. Usually you can talk about your healthcare with the nurses and doctors looking after you. However, there may come a time when you’re unable to make decisions about your treatment or care, or to communicate easily. This may be because the cancer affects your ability to communicate, or you may be too weak, sleepy or confused to say what you want.
We also have a section on dying with cancer|, which you might find useful.
An advance decision is a way of making sure that everyone knows how far you want treatment to go when you can’t make decisions for yourself. It only comes into effect if this happens. It means knowing you’ll be in control at a point in your life when you can’t easily communicate your wishes.
Setting out your views about particular treatments and approaches to your care can also help avoid disagreements within your family or with your healthcare team.
An advance decision can’t be used to refuse any basic care you might need to keep you comfortable. This includes food, fluids or pain control. It also can’t be used to request that your life be brought to an end.
An advance decision can be made by anyone over 18 years old (16 in Scotland). It is legally binding in England and Wales. Your doctor has to check that it’s valid and that it applies to decisions that have to be made at the time.
In Scotland and Northern Ireland, an advance decision isn’t legally binding. However, it must be taken into account by the medical team and others making decisions on your behalf. Doctors throughout the UK use similar principles when they’re working out how to take account of an advance decision.
Although an advance decision can be made verbally (spoken), it’s better if you write it down. This helps avoid confusion later on. If you live in England or Wales, there are certain situations where the law says it must be in writing (see the section below on preparing an advance decision).
Mental capacity means a person’s ability to make decisions. When people are unwell, their mental capacity can change from time to time. Your doctor needs to be sure you have the mental capacity to make a treatment decision if one is needed.
If your doctor is concerned about your mental capacity, they may ask you some questions to assess it. The British Medical Association and the General Medical Council provide guidance for doctors on assessing mental capacity.
Having mental capacity means that you need to be able to understand and remember information relevant to making the decision. You also need to be able to weigh up this information, make a decision and communicate it to your doctor or to others caring for you.
If you don’t have mental capacity then an advance decision made previously can help your doctors, family and friends to make the right decision for you.
It’s important to talk to your doctor or nurse when preparing an advance decision.
Refusing a particular treatment may mean that you’re putting your life at risk, and stopping a treatment might cause you discomfort or distress. So, it’s important to weigh up any decision carefully. Always talk it over and discuss your wishes and preferences with your doctor or nurse beforehand.
You’ll also need to give some information about the circumstances in which you would want the advance decision to be acted on. This may mean considering issues you or your family find distressing. So take your time and get as much support as you need from your healthcare team or family and friends.
The discussion you have with your doctor or nurse will help you identify the circumstances in which your advance decision would apply. For example, you might decide that:
You can write your own advance decision, but you may find it easier to use one that's already provided.
Hospitals and hospices often have written information and forms that people can use to prepare their own advance decisions. Age UK| and the NHS Advance Decision to Refuse Treatment |website provide useful examples.
An advance decision needs to include the following:
If the advance decision is about refusing a treatment that may keep you alive longer - for example, resuscitation or being put on a ventilator - to make it legal in England and Wales it must:
When you’ve made your advance decision it’s important to let the people caring for you know about it (healthcare professionals, next of kin, family, friends). This can avoid any confusion if there is a change in your condition. People often keep copies at home and with their GP or a specialist nurse. Your doctor or nurse can advise you about who else should know about it. This might include the ambulance service, local hospital or NHS Direct| (NHS 24| in Scotland). If you decide to cancel your advance decision it’s important to let everyone know.
In England and Wales, an advance decision is legally binding from the time it’s signed and, where necessary, witnessed. If it’s a verbal advance decision it should be followed by your doctor unless there’s a good reason not to. This also applies to verbal and written advance decisions in Scotland and Northern Ireland.
Occasionally there may be situations when a doctor does not act on, or questions if it’s right to act on, an advance decision. For example if:
Your advance decision may also be questioned or overturned if:
It is important to keep your advance decision up to date and discuss any changes with your doctor and family.
Many advance decision forms include a section in which an advance statement can be made. An advance statement is a description of how you would like to be cared for and can include the treatment you would prefer. It tells other people what’s important to you if at any time you’re unable to express your wishes and make your own choices. In simple terms, an advance decision is about what you would not like to happen whereas an advance statement says what you would like to happen.
An advance statement, unlike an advance decision, is not legally binding. But it will be taken into account and can help your doctors look after you in the way that you prefer. This may include where you would like to be cared for - for example, at home, in a hospice or at hospital. You can include the names of people, such as family or friends, who can be asked what your wishes would be.
You can refer to an advance statement at any time when talking about your care with any healthcare professionals looking after you. Your doctor or nurse may call this kind of discussion ‘advance care planning’. Doctors and nurses are encouraged to talk about advance care planning with people whose illnesses aren't likely to get better.
You don’t have to make this type of plan but it makes it easier for doctors and nurses to provide the right care for you. For example, you might want to be cared for in your own home rather than in hospital. Or you might want to go in to a hospice at a particular point in your care.
Your doctor or nurse will be able to give you more information about this. You can find information about advance care planning on the NHS ADRT| website.
Another option some people take to make sure their future care is carried out as they wish is to appoint someone to hold a Power of Attorney. This gives them legal power to make decisions on your behalf.
In England and Wales, there are two types of Lasting Power of Attorney (LPA):
A Property and Affairs LPA helps to manage your financial or legal affairs.
A Personal Welfare LPA allows you to choose who can make decisions for you about your health and social care. This includes decisions to refuse or agree to treatment.
You can appoint an LPA at any time when you have the mental capacity to do so. Their power only comes into effect when you lack capacity to make decisions for yourself and when the LPA document has been registered with the Office of the Public Guardian| (OPG).
There is a fee to register an LPA. If you are receiving certain benefits or have a low income, you may be exempt from paying the registration fee or only have to pay part of it. You can get more information about registering an LPA from a social worker at the hospital, the OPG office or organisations such as Age UK.
In Scotland the Welfare Power of Attorney (WPA) is a legal document that appoints one or more people to make decisions on your behalf about your care and treatment. The WPA has to be registered, and there may be a fee to do this. You can get more information about WPAs from a social worker at the hospital, from The Office of the Public Guardian (Scotland) and from organisations such as Age Scotland|.
In Northern Ireland it’s currently not possible to appoint other people to make decisions about your care and treatment on your behalf.
Thinking about a time in the future when you may need other people to make decisions for you can be distressing. Preparing for this may seem like a major step.
Advance decisions, advance statements and care planning can allow you to stay in control as much as possible. They also mean that your relatives, any attorney you appoint and anyone caring for you will know what you would want done.
Many people find that making plans like this lifts a burden from them and their families. It may help avoid uncertainty, confusion and tension. Organising your future care may allow you to relax more and focus on the present.
We also have a section on the emotional effects of cancer|, which you may find helpful.
You can talk this over with your doctor or specialist nurse, such as a palliative care nurse, or Macmillan nurse if you have one. Your GP can usually refer you to a Macmillan nurse if you don’t have one. You can also discuss this information with our cancer support specialists|.
This section is based on our Advance decisions factsheet which has been compiled using information from a number of reliable sources, including:
Content last reviewed: 1 December 2011
Next planned review: 2013
For answers, support or just a chat, call the Macmillan Support Line free (Monday to Friday, 9am-8pm)
If you have any questions about cancer, need support or just want someone to talk to, ask Macmillan.
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© Macmillan Cancer Support 2013
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