Starting the conversation
“So my family do not have to make difficult decisions.”
Planning ahead
Most people have an opinion about the treatment and care they want to receive. This guide will support you to record your preferences to help ensure they are respected if you cannot make a decision for yourself, or tell people what you want.
It provides an introduction to the ways you can plan for your treatment and care. It is best to make plans for your future while you are well and able to do so.
Any adult can plan for their treatment and care – you do not need to be unwell or over a certain age.
This guide explains your rights under the Mental Capacity Act 2005, which is a law in England and Wales. If you live in Scotland or Northern Ireland please contact us for information on how to make your wishes known.
Why should I plan for my treatment and care?
There may come a time when you are unwell and cannot tell the people around you what you do and do not want. By making plans now, you can record your preferences for treatment and care so that if you are ever in this situation, your wishes are known and can be followed.
Now that I have things organised, I can get on with living life – knowing people will know my wishes when it counts.
Recording your wishes allows you to express who you are and what is important to you. This gives you control over your treatment and care, and reassurance that the right decisions will be made. It can also be a good way to start conversations with your friends and family about what you want in the future.
Here are some of the reasons why people have planned for their treatment and care:
“To ensure I am not in pain.”
“So that I’m surrounded by the people and the things that I love.”
“I am worried that people won’t know how to care for me.”
“I don’t want my life to be prolonged when I have no quality of life.”
“I want people to know who I am, and how best to care for me.”
“It is important to me that I continue treatment for my illness for as long as possible.”
“I want my doctor to know my wishes.”
“To avoid family disputes.”
“To preserve my dignity.”
Who can make decisions about my treatment and care?
While you have capacity you have the right to make decisions about your treatment and care. You can decide if you want to consent to or refuse treatment, even if doing so may shorten your life.
If you lack capacity to make a decision for yourself, and you have not recorded your wishes, the healthcare professional in charge of your care will decide how to treat you. They must make decisions based on what they think would be in your best interests, but there is no guarantee that this would be what you would choose for yourself.
Many people think that their family or next of kin can make decisions about their treatment or care if they are unwell, but this is not always the case. Even though these people should be consulted when a decision is made, they will not have the final say.
By making plans now you can ensure the important people in your life, and your healthcare team, know your wishes.
If you plan ahead by making an advance statement, living will (advance decision) and/or lasting power of attorney (LPA), they will only be used if you can no longer make decisions for yourself.
You can cancel or make changes to your advance statement, living will (advance decision) and LPA at any time – see the frequently asked questions for more information.
What is capacity?
Capacity is the ability to make a decision for yourself. Your capacity to make a decision depends on when the decision needs to be made, and what the decision is.
You might lack capacity to make a decision on one day but be able to make that decision at a later date. For instance, this might be because you have dementia and your ability to remember information differs from one day to the next.
You might also have capacity to make some decisions but not others. For example, you might have capacity to decide what you want to eat each day, but not to make a decision about life-sustaining treatment.
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 because of that impairment, you cannot do one or more of these things:
- Understand information relating to the decision
- Remember 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 and a healthcare professional thinks that you might lack capacity, then they will assess whether or not you have capacity to make that decision.
How does someone decide what is in my best interests?
If you lack capacity to make a decision then someone may have to make that decision for you. If this happens they have to act in your best interests.
A best interests decision is based on your values, beliefs and preferences. It should be the decision you would make for yourself if you could.
The Mental Capacity Act 2005 says the decision-maker must consider:
- All the relevant information, including the potential benefits or risks of a particular treatment, or any long-term consequences of giving or withholding the treatment such as the impact on your quality of life.
- Your past and present wishes and feelings, any wishes you have previously expressed, written down, or what you say you want now.
- Any values and beliefs you have that would be relevant to the decision.
- The views of your family members, carers and other relevant people.
How to plan for my treatment and care
Talking about my wishes
Talking about your health and your priorities for the future is important for you and the people around you. It can help you to make informed decisions, and give you peace of mind knowing that others understand what is important to you.
Having these conversations can also help to make the important people in your life feel involved, and ensure they are not left guessing if your healthcare team asks them for information about your wishes when making a decision in your best interests.
Talking about your wishes and feelings with your family, friends or a healthcare professional can be emotionally demanding, especially if they do not agree with you, or have values which challenge your own. But these conversations can also bring you closer together, and many people find them rewarding.
To prepare for these conversations, you may want to take some time to think about what is important to you and your quality of life. Some people find writing their thoughts down helpful.
Need help?
Our ‘Starting the Conversation’ Guide can support you to have conversations about your treatment and care.
Should I talk to my doctor about my wishes?
If you are able to, it is a good idea to speak to your doctor about your wishes. Your doctor can help you to understand your treatment and care options, including any likely benefits and risks. This will help you decide what is right for you, based on your personal priorities, values and beliefs. You can speak to any professional involved in your care including your GP, consultant, or nurse. Even if you would prefer not to discuss your wishes with your doctor, it is still important to make sure your wishes are recorded on your medical notes. This helps to make sure they are known about and can be followed.
Need help?
Our ‘What now? Questions to ask after a terminal diagnosis’ Guide can support you to ask questions and find the information you need from health and care professionals, so that you can make informed decisions about your treatment and care.
Recording my wishes
Once you have thought about and discussed your preferences for your treatment and care, you can put these in writing. This is an important step because it will help to ensure that your wishes are clear, and that they can be followed by a healthcare professional.
There are three main ways that you can record your wishes. You can make:
Living will (advance decision)
Details of any treatments you do not want to receive (free).
Read our guide on living wills (advance decisions).
Elizabeth’s story
“My wife had an on-going heart condition. She’d had several heart attacks and was tired of living with failing health. When she had her last heart attack, she explained to me that she didn’t want any more treatment.
She told her healthcare team, and wrote her Advance Decision in case she lost the ability to tell people what she wanted. Her treatment plan changed immediately based on her wishes, and she was kept comfortable. She asked for all medication for her heart condition to be stopped, and she was given pain relief and whatever she wanted by way of food and drink.
As she became unable to swallow, she was given fluid through a drip. She drifted into a coma and her Advance Decision, which refused all further treatment for her heart condition, was followed. She died three weeks later surrounded by her family. I am so grateful that she had written her wishes down, and did not have to suffer any more pain.”
Lasting power of attorney
Choosing someone you trust to make decisions for you (registration fee only).
Read our guide on lasting power of attorney.
Peter’s story
“Dad had hidden his memory difficulties, and did not find talking about his health easy. But he was clear that he wanted me to support him and make decisions for him if needed, so he made me his attorney for health and welfare.
After mum died in 2009, dad was able to continue living at home despite his memory problems. He had daily support for shopping, cleaning and cooking from his carers and me.
Sadly, in 2016 we were told his kidneys had failed. He was offered dialysis, which might delay the effects by a few months, but he would have to travel to the hospital several times a week – which was a two hour drive away from his house. I was told that dad did not have capacity to make this decision, and as his attorney I would need to decide for him.
I had already spoken to dad about his priorities, and I knew that he would like to live for as long as possible, but only if he could have the lifestyle he had at the time – living at home, spending days in the garden and watching the sea. At this point dad was 92, he did not travel easily and he found new places difficult.
Based on the limited benefits of the dialysis treatment, and dad’s priorities, I believed it was best for him not to travel several days every week. I refused the dialysis treatment on his behalf, and continued to make his life comfortable and pain free. It was a very difficult decision to make. I had to explain why I was refusing the treatment to his doctors, but they understood that I was acting in dad’s best interests and so they supported my decision.
He died a year later in September 2017. His last months were spent doing the things he enjoyed most, seeing his family and enjoying his garden.”
Advance statement
Information about you, your lifestyle, and the care you would prefer to receive (free).
Read our guide on advance statements.
Ana’s story
“When I was first diagnosed with terminal cancer, it was such a shock. I didn’t know what to think or feel. As it sank in, I realised I needed to think about what was important to me for the time I had left. I knew that I wanted to spend my time doing the things that I care about most – being involved in my local church, watching tennis, and having a pub lunch on a Sunday after a walk on the beach.
I know that as my cancer progresses I’ll be less able to go out and about, and I also may not be able to tell people what I want. I would prefer to stay at home for as long as possible and have carers to help me. I’ve written down all of the things I want them to know, like how I enjoy watching the garden from my window, and that I love to talk about sports.
I prefer to have the TV on as background noise instead of music, and I don’t like to eat a lot of dairy because it makes me feel unwell.
It’s very important to me that I continue to go to church for as long as possible, and pray each day at home. The idea of being bathed by a male carer or nurse makes me feel anxious, and I’m worried that I’ll be in pain.
Now that I’ve written these things down, people caring for me will understand what matters to me, and can make the right decisions for me.”
You can make all three, or you might feel that one is better for you than another.
Do not resuscitate (DNR)
Another decision you may need to make is about resuscitation.
Read our guide on DNR (do not resuscitate).
Dr Khan’s story
“Kate was a 56 year old woman with Motor Neurone Disease (MND) who was admitted to our respite unit. Kate was feeling very anxious about the recent advances in her progressive disease, as her ability to speak and swallow was now deteriorating. She was keen to talk about her future plans and, as part of that conversation we discussed resuscitation (CPR). I explained that her disease had begun to affect her muscles, and that there was an increased risk that her lungs could stop working and her breathing would stop.
Kate had always been a fiercely independent woman who owned her own business. Her diagnosis had been a huge shock and despite trying to continue as normal, the consequences of her disease meant she had to sell her business and reconsider her life plan. Her main concern was her quality of life. She felt sad and frustrated about not being able to communicate with her young grandchildren whom she adored.
I explained that if her breathing did stop, an attempt to resuscitate her would be very unlikely to work. At best, it might result in her needing to use a ventilator which would breathe for her. Kate was adamant that she did not want this to happen, or for her family to witness this. As a result of this conversation Kate and I agreed that CPR would not be appropriate for her. A DNAR form was added to her medical records, and the decision not to attempt resuscitation was communicated to the relevant health care professionals and Kate’s family.”
How to make sure people know my wishes
If you make an advance statement, advance decision or lasting power of attorney (LPA), it is important that the people involved in your care know about it.
There are things that you can do to make people aware of your wishes:
- Ask your GP to keep photocopies with your medical records.
- Give photocopies to anyone who is regularly involved in your care. This could be a consultant, social worker, your local hospital, and local ambulance service.
- Give photocopies to people you know and trust. It is important that anyone who might be contacted if you are admitted to hospital knows how your wishes are recorded.
- Keep a copy with you, preferably the original so that you can review it regularly.
- If you make an advance decision, you can contact Compassion in Dying to request a Notice of Advance Decision card to keep in your bag or wallet.
- If you make an LPA, the Office of the Public Guardian has a register of all LPAs. However, searching the register can take a long time, so it is important to show anyone involved in your care your registered LPA form.
- MedicAlert provides jewellery for people who need to convey important information in an emergency. There is an annual fee and an additional charge for jewellery.
- You can use the Lions Club Message in a Bottle scheme to keep a copy of your living will in the fridge. Paramedics should know to look for the Lions Club symbol when entering your house and to check the fridge.
Frequently asked questions
How will it feel to plan ahead?
Some people find it challenging to think about their current health and their priorities for the future. This may be because they have had a recent diagnosis, or they know someone who has had a bad experience at the end of life. Thinking about your values and how they affect your preferences for treatment and care is a deeply personal experience and it can bring up unexpected and perhaps unwanted emotions.
It makes living easier. It’s liberating. It is good to have discussed these important things with loved ones. It can bring you closer together. Having all these decisions made saves a lot of worry.
Although it can be emotionally challenging, people also find that it can be incredibly worthwhile and a relief to have things organised. After making plans for their treatment and care people say that they feel more in control, and that they have peace of mind knowing that their wishes are recorded, which allows them to get on with living life now.
Is it difficult to plan ahead?
Some people find completing an advance statement, advance decision or LPA straightforward and can complete it on their own, and other people need more support. If you need support to complete a form or have any questions we can help.
- Even if this does not feel easy, if it is important to you it is worthwhile doing
- Take your time
- You don’t have to do it all in one go. Some people find it easier to think about, or have conversations about their health, values and priorities in stages
- Ask for help or support if you need it
Do I need a solicitor?
You do not need a solicitor to make an advance statement, living will (advance decision) or lasting power of attorney. Compassion in Dying provides free support to complete these forms over the phone or by email.
If you have questions about planning ahead, we can help. Contact our free information line on:
- phone on 0800 999 2434
- email at info@compassionindying.org.uk
Is it expensive?
It is free to make an advance statement and/or living will (advance decision). Compassion in Dying provides free forms or you can complete them online at: www.mydecisions.org.uk.
There is a one-off fee when you register an LPA, in 2018 it was £82. It is possible to get a reduced fee if you have an income under a certain amount, or are receiving certain benefits.
Can I have both an advance decision and a lasting power of attorney?
You can have both an advance decision and a lasting power of attorney (LPA) for Health and Welfare. If you do, the one that you made more recently will take priority when a decision needs to be made about your treatment or care.
If you have made an advance decision before registering an LPA.
Your attorneys will be able to override what is written in your advance decision, if you have given them the power to make the decision in question. However your attorneys must always make decisions that are in your best interests. This includes taking into account anything that you have said or written down, including an advance statement or advance decision.
If you have made an advance decision after registering an LPA.
Your attorneys will not be able to override what is written in your advance decision. In this situation, if a decision needs to be made about something that you have not included in your advance decision, then your attorneys will still be able to act on your behalf. If you have both an advance decision and an LPA you should discuss your advance decision with your attorneys and give them a photocopy.
People often say that it is helpful to have someone’s preferences for care written down when making decisions on their behalf, especially about life sustaining treatment. Even though you should have spoken to your attorneys about your wishes, having something in writing is a great sense of support for your attorneys when making difficult decisions.
What if I change my mind?
While you have capacity you can cancel or make changes to your advance statement, advance decision, and lasting power of attorney at any time.
advance statement and living will (advance decision)
- You can cancel your advance statement or advance decision by destroying it (and any other photocopies you have given to other people).
- If you update your contact details or the details of your GP you can cross out the old information and write in the new details. You will need to sign and date next to the change, but you do not need to fill out a new form.
- If you would like to make other changes to your advance statement or advance decision then it is a good idea to make a new one. If you make changes to the existing form, it could make it hard for people to read. Filling out a new form will ensure that your wishes are clear and easy to follow.
Lasting power of attorney
- To cancel or make changes to your lasting power of attorney you will need to contact the Office of the Public Guardian on 0300 456 0300.
Your advance statement, advance decision, and lasting power of attorneywill only be used if you lack capacity to make decisions for yourself.
Can anyone override my wishes?
While you have capacity you have the right to make decisions about your treatment and care. You can decide if you want to consent to or refuse treatment, and no one can override your wishes.
If you lack capacity and you have:
- Made an advance statement
It is not legally binding, which means people can override it. But an advance statement must be taken into account when someone is making a decision on your behalf.
- Made an advance decision
If it meets certain requirements and applies to the situation you are in, it is legally binding and must be followed. This means no one can override it.
- Made an advance decision and a lasting power of attorney
If you have made an advance decision before registering an lasting power of attorney your attorneys can override your advance decision. However your attorneys must always make decisions that are in your best interests. This includes taking into account anything that you have said or written down.
If you have made an advance decision after registering an lasting power of attorney, and your advance decision meets certain requirements and applies to the situation you are in, then no one can override it.
Need help?
If there is a disagreement over how someone is being treated or cared for, you can talk to us:
- 0800 999 2434
- info@compassionindying.org.uk