Get help Advice and information leaflets Planning for your future care Contents Introduction Mental capacity Frequently asked questions What to include Guide to creating an advance decision Advance decisions and the law in England and Wales Reviewing and changing your advance decision Refusing CPR Advance statement Health and welfare lasting power of attorney in England and Wales Scotland and Northern Ireland Useful websites Introduction If you want to make plans for your future care, there are several options open to you. This leaflet focuses on advance decisions (previously living wills) which allow you to say which treatments you do and do not wish to receive. It also includes summaries of advance statements and how to grant someone a lasting power of attorney. All three are only used if you are unable to make or communicate your wishes in the future. The information in this booklet applies to England and Wales. Scotland and Northern Ireland have different systems (see below). Advance decision Allows you to say what treatments you wish to refuse Allows you to say under what circumstances you wish to refuse them Is legally binding Advance statement Sets out how you want your care to be delivered Is not legally binding Lasting power of attorney Allows you to appoint someone to make decisions on your behalf Mental capacity An advance decision, statement or power of attorney, or refusal of CPR can only be made when you have the ‘mental capacity’ to make the decision and understand what it means. What is mental capacity? Mental capacity means being able to make your own decisions. Why would I lack capacity? Reasons for lacking capacity include: illness, dementia, mental health conditions and learning disabilities. Does a mental health condition mean I cannot create an advance decision? No. If you have a mental health condition you can still make an advance decision, statement or power of attorney as long as you understand the implications. Are all capacities the same? No. You may have mental capacity even if you do not have the capacity to make other decisions, for example managing money. Frequently asked questions What is an advance decision? An advance decision lets your medical team know your wishes in case you are unable to communicate them in the future. It says what treatments you wish to refuse, including life-sustaining treatment. What is life-sustaining medical treatment? Life-sustaining treatment is something that could keep you alive, for example ventilation if you cannot breathe by yourself. How do I decide what treatment to refuse? You can discuss treatments with your healthcare professional before making up your mind. Why would I make an advance decision? It lets your family, carers and medical team know your wishes if you are unable to make or communicate them yourself. It can give you peace of mind that your wishes will be followed. Who can make an advance decision? You can make an advance decision if you: Are 18 or over Have the mental capacity to make the decision and understand it Have not been pressured or influenced by anyone else. When will it be used? An advance decision will only be used if you have lost the ability to make or communicate your wishes. What to include For your advance decision to be valid, you must include the following: Your full name and address The name and address of your GP Whether advice was sought from healthcare professionals What treatments you wish to refuse The circumstances in which you wish to refuse them Your signature A witness’ signature The date it was drafted. You can also include details of who you would like the medical team to speak to. They will not have any legal powers but their views should be taken into account. What can’t I include? You cannot use an advance decision to: Request or demand particular treatments Ask for anything illegal, for example, help to end your life Refuse basic nursing care to keep you clean and comfortable Appoint someone to make decisions on your behalf. Guide to creating an advance decision Step 1 Think carefully about your wishes. It is a good idea to discuss your decisions with those close to you and a healthcare professional. Step 2 Create your advance decision. You do not need a solicitor to do this. Use the checklist on page 4 to ensure you have included all the necessary information. Step 3 Sign your advance decision and get it witnessed. Step 4 Set review dates. It is a good idea to review your advance decision at least every two years. Step 5 Make sure people know about your advance decision. There are several ways to do this: Ask your GP to keep a record of your advance decision with your medical records Give a copy to anyone who is regularly involved in your care Give a copy to your friends and family Keep a ‘notice of advance decision’ card on you. Compassion in Dying provide a useful template. More information Compassion in Dying provides a free advance decision pack. This includes a template for your advance decision and further advice: compassionindying.org.uk Advance decisions and the law in England and Wales Do my doctors have to follow my advance decision? Yes. Healthcare professionals are legally bound to take account of your wishes as long as: They know an advance decision exists It is valid It applies to the current situation. What if my doctor disagrees with my decision? Doctors must comply with your wishes even if they have a moral objection. This may mean they ask a colleague to treat you. What if it is an emergency? If doctors know an advance decision exists, they will follow it even in an emergency. If it is unclear whether an advance decision exists emergency treatment will not normally be delayed to look for one. This is why it is important to let your family and GP know about your decision. Doctors and nurses are allowed to provide treatment without consent in an emergency situation. Can I invalidate my advance decision? Yes, if you make statements which contradict it while still having mental capacity. For example, saying ‘I have changed my mind’. Can someone override my advance decision? Yes. But they will have to produce evidence to show why it is not valid, does not apply or no longer reflects your wishes. What if I already have a living will? Until October 2007, an advance decision was known as a living will. Living wills are still valid. Reviewing and changing your advance decision It is important to keep your advance decision up to date. There may be improvements in treatments, or you might change your mind. How often should I review my advance decision? You should review your advance decision at least every two years to make sure it still reflects your wishes. Why is this important? A recently updated advance decision is more likely to be valid when the time comes to use it. How do I review it? Check your advance decision still reflects your wishes. If you do not want to make changes, sign and date to show it has been reviewed. Tell anyone who has copies. Can I make changes? Yes. You can make changes as long as you can communicate and have mental capacity. What should I do with my old advance decision? If you change your advance decision all copies of the previous version should be destroyed and replaced. This will help prevent confusion. Refusing CPR Everyone with capacity has the right to refuse CPR even if they do not have an advance decision. This is known as ‘do not attempt cardiopulmonary resuscitation’ (DNACPR). What is CPR? CPR is a treatment that attempts to start breathing and blood flow in people who have stopped breathing or whose heart has stopped beating. How does a DNACPR work? If you have a serious illness or are undergoing major surgery a member of your medical team should ask you about your wishes. Once a DNACPR decision is made, it is put in your medical records. This is usually on a special form that health professionals will recognise. Who should I tell? It is helpful to tell your family or other carers about your decision so it does not come as a shock. Will my family be asked for their views? Your next of kin may be asked about your wishes if you do not have capacity when a decision needs to be made, you have not made an advance decision and do not have a DNACPR. Can I change my mind? Yes. A DNACPR is not permanent, and you can change your mind at any time. Advance statement An advance statement sets out how you would like your future care to be delivered. It can be added to your advance decision or created as a separate document. Why would I want an advance statement? It provides a guide to anyone who might have to make decisions in your best interests. By writing your advance statement down you can help to make things clear to your family, carers and anybody involved in your care. What does it cover? An advance statement can cover any aspect of your future health or social care. It could include: How you want religious or spiritual beliefs to be reflected Where you want to be cared for and how much care you want to receive How you like to do things Concerns about practical issues Is an advance statement legally binding? No. Unlike an advance decision an advance statement is not legally binding. However, your statements should be considered when someone is making a decision for you. Does it have to be signed and dated? No. But your signature will help make it clear that the statement is your wishes. Who should see it? This is up to you. Keep it somewhere safe and tell people where it is. You can also keep a copy in your medical notes. Health and Welfare lasting power of attorney in England and Wales You can grant someone a health and welfare lasting power of attorney (LPA). They make health decisions for you if you become unable to make them yourself. This is important for the peace of mind for you and your family. Why would I create one? It can give you more control over what happens to you if, for example, you have an accident and cannot make decisions. They can make decisions not covered by an advance decision. Can anyone appoint an LPA? You can appoint one or more people to help you make decisions or make decisions on your behalf if you: Are aged 18 or over Have mental capacity. What can they decide? A health and welfare LPA can make decisions about: Your daily routine Your medical care Moving into a care home Life-sustaining treatment When can they start making decisions? Only once you are unable to make them yourself. Can I have a health and welfare LPA and an advance decision? Yes. It is important to remember that the more recent document will be the one considered first legally. Do I need to include my LPA in my advance decision? Yes. If you have already appointed an LPA you should record their details on the advance decision document. More information For full instructions and a form visit gov.uk/power-of-attorney. Scotland and Northern Ireland The information in this booklet covers advance decisions in England and Wales. The laws in Northern Ireland and Scotland are different. Northern Ireland – advance decision In Northern Ireland advance decisions are covered by common law. This means a clear and specific advance decision must be followed. If a healthcare professional knows about an advance decision and chooses to ignore it, they can be taken to court. Scotland – advance directive In Scotland an advance decision is known as an advance directive. It is not legally binding. However, it should be taken into account when a decision is made on a person’s behalf. Northern Ireland – power of attorney In Northern Ireland there is no way to give another person the legal power to make decisions about your health or care. This means if you lack capacity your doctor should consult your loved ones but they do not have to follow what they say. Scotland – power of attorney In Scotland a welfare power of attorney can make decisions about your health and personal welfare. Useful websites Age UK – ageuk.org.uk Advice on advance decisions Compassion in Dying – compassionindying.org.uk Advance decision form Gov.uk – gov.uk/power-of-attorney Information on making a lasting power of attorney Mental Health Foundation – mentalhealth.org.uk/a-to-z/m/mental-capacity Definitions of mental capacity Mind – mind.org.uk Mental health charity offering advice on advance decisions NHS – nhs.uk Information on advance decisions in England and Wales NIDirect – nidirect.gov.uk Information on power of attorney in Northern Ireland Office of the Public Guardian – publicguardian-scotland.gov.uk Information on power of attorney in Scotland Rethink Mental Illness – rethink.org Advice on advance statements and decisions Sources Source material for the information contained in this leaflet is available on request. Contact the Patients Association helpline The Patients Association offers a free national helpline providing specialist information and advice to help patients make sense of their health and social care. Patients can talk directly to trained advisers in strict confidence about any concerns, questions or general experiences they have regarding the NHS and social care systems. The helpline is open from 9.30 am to 5pm, Monday to Friday, and calls outside these times are returned as soon as possible during opening hours. If you would like to contact the helpline, please call free on 0800 345 7155, or visit the Patients Association helpline page on our website for more information.