Information Line: 0800 999 2434 Website: compassionindying.org.uk What happens if I cannot make decisions about my care and treatment? This factsheet explains how decisions are made about your care or treatment if you lack capacity (the ability to make decisions for yourself). It is for people living in England and Wales. If you live in Scotland or Northern Ireland, or if you would like more information about planning ahead for your future care and treatment, please contact us. What is capacity? Capacity is the ability to make a decision for yourself. It is time and decisionspecific. This means that whether or not you have capacity depends on when the decision needs to be made and what the decision is. So, you might lack capacity to make a decision on one day but be able to make that decision at a later date. This might be, for example, because you have dementia and your ability to remember information differs from one day to the next. Also, you might have capacity to make some decisions but not others. For example you might have capacity to decide what you want to eat every day but not to understand what will happen if you refuse life-sustaining treatment. 1
You lack capacity to make a decision if You have an impairment or disturbance of the mind or brain (for example, because you are unconscious, have dementia, a mental health condition, a brain injury or a stroke) and you cannot do one of these things: understand information relating to the decision retain that information for long enough to make the decision take that information into account when making the decision communicate the decision The law says that people must be assumed to have capacity unless it is proven otherwise. However, if a decision needs to be made about your health or care and a healthcare professional thinks that you might lack capacity, then they will need to assess whether or not you have capacity to make that decision. How are decisions made if I lack capacity to make a decision about my care or treatment? If you lack capacity, there is a law called the Mental Capacity Act (MCA) that sets out a framework for making decisions on your behalf. The MCA has five principles which must underpin everyone s approach to making decisions on behalf of someone who lacks capacity. 1. A person must be assumed to have capacity unless it is proven otherwise. 2. All practicable steps must be taken to support a person to make a decision. 3. A person is not to be treated as lacking capacity because they make an unwise decision. 2
4. Any decision made on behalf of a person who lacks capacity must be made in their best interests. 5. Any act done on behalf of a person who lacks capacity must be the least restrictive option. How decisions are made on your behalf if you lack capacity depends on whether or not you have made an Advance Decision or a Lasting Power of Attorney for Health and Welfare. If you have made an Advance Decision If you lack capacity and have previously made an Advance Decision refusing a medical treatment, the healthcare professional in charge of your care must decide if it is valid and applicable. If it is, they must follow it. See our factsheet Advance Decisions (Living Wills) When is my Advance Decision legally binding? for more information. If you have made a Lasting Power of Attorney for Health and Welfare If you lack capacity and have previously made a Lasting Power of Attorney for Health and Welfare (LPA), the healthcare professional in charge of your care must check that your attorney has been given power to make the decision in question (when you make your LPA you must choose if you want your attorney to make decisions about life-sustaining treatment). If your attorney does have that power then they must make the decision. They must act in your best interests when doing this (see below). See our factsheet Lasting Powers of Attorney for Health and Welfare An introduction for more information. 3
If you have not made an Advance Decision or a Lasting Power of Attorney for Health and Welfare If you have not made an Advance Decision or an LPA the healthcare professional in charge of your care must make a decision based on what they believe is in your best interests. How does someone decide what is in my best interests? Principle 4 of the MCA says that any decision made on behalf of a person who lacks capacity must be made in their best interests. How someone decides what is in your best interests will depend on you and the situation you are in. The MCA provides a list of things that must be considered when someone is deciding what is in your best interests. This list is non-exhaustive, which means that there might be other things that the decision-maker needs to consider as part of the decision. A healthcare professional must consider: All the relevant information If the decision is about medical treatment, relevant information could include your medical needs, the potential benefits or risks of the treatment or any long term consequences of giving or withholding the treatment such as impact on quality of life or life expectancy. Your past and present wishes and feelings This means taking into account any wishes you have previously expressed, or what you say you want now. You might have written your wishes in an Advance Statement or a care plan. You might also have previously spoken to those close to you about what you would want in a particular situation. 4
Any values and beliefs you have that would be relevant to the decision This includes any cultural values, religious beliefs or political views that you have. The views of your family members, carers and other relevant people This includes anyone you previously named as someone you want to be involved in decisions about your care. It also includes people you haven t specifically named, such as your family members, as well as others involved in your care such as a carer or social worker. The decision-maker should speak to these people to find out about your values or wishes, and to see what they think is in your best interests. If there are people that you have expressly said you do not want to be involved in your care then the decision-maker will also take this into account. What if people disagree about what is in my best interests? It is possible that people will disagree about what is in your best interests. People close to you might disagree about what you would have wanted or they might disagree with the healthcare professional about what treatment they think is best for you. The healthcare professional should try to find a way to balance these concerns, but ultimately they have the responsibility to make the final decision based on what they feel is in your best interests. If there is still disagreement it might be possible to involve an advocate or get a second opinion from another healthcare professional. It is also possible that those in charge of your care might arrange a best interests meeting, which those 5
close to you could be invited to. The purpose of this meeting will be for each person to explain what they feel is best for you and to decide on a way forward. If the disagreement cannot be resolved then the hospital may arrange for mediation. This involves an independent person who facilitates discussions and tries to resolve the situation. If all other attempts to resolve a disagreement fail, the Court of Protection can be asked to make a decision. This Court was set up to protect people who are unable to make decisions for themselves. They have the power to decide what is in someone s best interests, based on all the evidence presented to them. Can my family members or other people close to me make a decision about my care and treatment? Your family members and other people close to you (including your next of kin) do not have any legal authority to make decisions about your care or treatment if you lack capacity. Although they should be consulted, the healthcare professional does not have to follow what they say. The only way to give someone the legal authority to make decisions on your behalf is by making a Lasting Power of Attorney for Health and Welfare. See our factsheet Lasting Powers of Attorney for Health and Welfare An introduction for more information. Court Appointed Deputies If you lack capacity and there are ongoing decisions that need to be made about your health or care, someone close to you can apply to the Court of Protection to be appointed as your deputy. They can only do this if you have not made a 6
Lasting Power of Attorney for Health and Welfare. A deputy has the legal power to make specific decisions about your care. They must be over 18 and are usually a family member or friend. The person who wishes to become your deputy must make an application to the Court of Protection. If their application is successful the Court will issue a court order that gives them authority to act on your behalf and states the types of decisions they are legally allowed to make. The Court will only give the deputy power to make decisions about specific issues. This is because the deputy is appointed after you lose capacity and you haven t chosen this person yourself. The decisions your deputy can make will depend on your needs and particular circumstances. A deputy can only make a decision that they have been given the power to make. So, for example, they cannot make a decision about your medical treatment if the Court has only given them the power to make a decision about your care arrangements. A deputy can never be given the power to make a decision about life-sustaining treatment. A deputy must always make decisions in your best interests. They must also take all possible steps to help you make a decision for yourself if you can. It is worth noting, however, that welfare deputies are appointed relatively rarely. This is because the MCA states that if a serious decision needs to be made about a person s welfare, then a decision by the Court of Protection is better than appointing a deputy. For more information about deputies please contact the Court of Protection. 7
What if I do not have anyone close to me to be involved in decisions? If you lack capacity and a decision needs to be made about serious medical treatment but you do not have anyone close to you that can be involved in decisions, an Independent Mental Capacity Advocate (IMCA) will represent you. The MCA created this role to make sure that people who lack capacity are represented in decisions about their care or treatment. The role of an IMCA is to support and protect the rights of people who have nobody else to speak for them. An IMCA will not be the person that makes the final decision, but it is their role to gather and present any information that will help the decision-maker (for example your social worker or doctor) to act in your best interests. The IMCA will try to find out what your wishes and feelings are, and make sure your values or beliefs are taken into account when a decision is made. They should ask questions on your behalf, make sure that your rights are upheld, and check that the decision-maker has acted properly. They can also challenge any decisions made which they feel are not in your best interests. It is the responsibility of your local authority or NHS organisation to make sure that there are IMCAs available to represent people who lack capacity. 8
How can we help? We can send you a free Advance Decision and Advance Statement form along with guidance notes that explain how to complete them. Alternatively, you can complete these documents online for free at www.mydecisions.org.uk. We can also support you to complete your forms over the phone. If you have any questions about Advance Decisions, Lasting Power of Attorney for Health and Welfare, planning ahead or decision making more generally then please contact our Information Line. The following Compassion in Dying factsheets may also be helpful: Advance Decisions (Living Wills) An introduction Lasting Power of Attorney for Health and Welfare An introduction Advance Decisions and Lasting Power of Attorney for Health and Welfare What is best for me and can I have both? Planning Ahead: Making Choices for the End of Life - a comprehensive guide to planning ahead for your future care and treatment Starting the Conversation - a booklet to support you to talk to your family, friends and doctor about your wishes for the end of life 9
Further sources of information Office of the Public Guardian The OPG is part of the Ministry of Justice and has responsibilities for England and Wales. It supports the Public Guardian in the registration of Lasting Powers of Attorney (LPA), and the supervision of deputies appointed by the Court of Protection. It also helps attorneys and deputies to carry out their duties, and protects people who lack capacity to make decisions for themselves. Address: PO Box 15118, Birmingham, B16 6GX Phone: 0300 456 0300 Email: customerservices@publicguardian.gsi.gov.uk Web: www.gov.uk/office-of-public-guardian The Court of Protection Address: The Royal Courts of Justice, Thomas Moore Building, London, WC2A 2LL Phone: 0300 456 0300 Email: courtofprotectionenquiries@hmcts.gsi.gov.uk Web: www.gov.uk/court-of-protection 10
Every effort has been made to ensure that the information provided in this factsheet is accurate and up-to-date, but information can change over time. Compassion in Dying does not accept any liability arising from its use, and it should not be used as an alternative to legal or medical advice. You can find the latest version of this publication on our website. Compassion in Dying, 2015. All rights reserved. Except for personal use, no part of this work may be distributed, reproduced, downloaded, transmitted or stored in any form without the written permission of Compassion in Dying. Registered charity no. 1120203. A company limited by guarantee and registered in England no. 05856324. Contact our Information Line: Phone: 0800 999 2434 10am -4pm Monday -Friday Email: info@compassionindying.org.uk Address: Compassion in Dying 181 Oxford Street, London W1D 2JT Factsheet code: IN08 Publication or last review date: May 2016 Next review due: May 2019 Version number: 3 Compassion in Dying supports people to plan ahead to ensure their wishes for treatment and care are respected. A list of references is available on request 11