Advance Care Planning

Advance care planning is simply thinking ahead about the care and treatment you would want in the future, and making your wishes known. That way, if there is ever a time you cannot easily say what you want, the people caring for you understand your preferences.

It is a process, not a single event, and it is entirely led by you. It can be as simple as conversations with the people close to you and your care team, or it can include written documents. You decide how far to take it and when.

Advance care planning can involve:

• Talking about what matters to you. This includes your values, what a good quality of life means to you, and what you would or would not want.
• Recording preferences about future treatment and care, so they can be respected.
• Choosing someone to speak for you. This is a trusted person who can help make decisions on your behalf if you are unable to.
• Writing things down, in whatever form is recognised where you live.

A few important things to know:

• It is always your choice. You do not have to plan anything you are not ready to, and you can do as much or as little as you wish.
• You can change your mind at any time. Anything you record can be updated as your views or situation change. It is not set in stone.
• The exact legal documents and terms differ from country to country (you may hear words like advance directive, living will, advance decision, or power of attorney). Local advice matters for the formal parts.

This card explains why planning ahead can help, what it can cover, how to start, and how to make sure your wishes are known. The next question looks at why people find it worthwhile.

Advance care planning is a deeply personal choice, and it is normal to feel reluctant. Thinking about the future can be hard. But many people find that, once done, it brings a real sense of relief and control. Here is why people find it worthwhile.

• It keeps you in control. Recording your wishes means future care is more likely to reflect your values and choices, even at times when you might not be able to express them easily.
• It eases the burden on those you love. If decisions ever need to be made on your behalf, knowing what you would have wanted spares your family the weight of guessing. It also spares them the worry that they chose wrongly. For some people, that is the main reason to plan ahead.
• It can prevent unwanted situations. Thinking ahead means care can be arranged the way you want, rather than by default in a crisis, and helps avoid treatments you would not have chosen.
• It opens helpful conversations. The process often brings families closer and makes sure everyone understands each other, rather than leaving important things unsaid.
• It brings peace of mind. Some people describe feeling lighter once their wishes are known. They can focus on living, knowing this is taken care of.

It is worth being honest, too: planning ahead can stir up difficult emotions, and there is no right way to feel about it. These benefits are widely recognised and advance care planning is recommended in MND guidelines, but they have not been tested in a trial in ALS/MND, so they are what people and clinicians report rather than a measured result. You do not have to do it all at once, or before you are ready. Some people prefer to start with a single conversation; others find it easier once they have support from their team or a counsellor.

Nothing you record is locked in. You can change anything at any time, so planning now simply means your current wishes are known. The next question looks at the kinds of things advance care planning can cover.

Advance care planning can cover as much or as little as you want, and you do not have to decide everything at once. It often includes some mix of the following. Think of it as a menu, not a checklist.

What matters to you

• Your values and priorities. These cover what quality of life means to you, what you most want, and what you would find unacceptable. They guide everything else.

Who speaks for you

• Naming a trusted person to help make decisions on your behalf if you cannot. This includes making sure they understand your wishes. (The legal way to appoint someone varies by country.)

Future treatment and care preferences

• Preferences about specific treatments that can come up in ALS/MND, such as breathing support (non-invasive or invasive ventilation), feeding tubes, and what you would want in an emergency or if your heart stopped (resuscitation). These are big, personal decisions, and Compass does not tell you what to choose. They are best explored with your team, who can explain each one. (The breathing and feeding cards cover them in detail.)
• Preferences about comfort and palliative care.

Where you want to be cared for

• Your wishes about where you would prefer to receive care as needs increase, and where you would want to be at the end of life, if you wish to record that.

Practical and personal matters

• Other things that matter to you. These can range from everyday preferences to spiritual, cultural or personal wishes.

You can approach these in any order, over time, and revisit them. Some people focus first on naming who speaks for them and their general values, and come to specific treatment choices later, with their team's input. There is no requirement to address the hardest topics before you are ready. The next question covers how to start and who can help.

Starting can feel like the hardest part, but it does not have to be formal or complete to begin. A first conversation is enough. You are not alone in this; several people can help.

Ways to start:

• Begin with a conversation about what matters to you, with someone you trust or with your care team. You do not need answers to everything first.
• Take one topic at a time. You might start with your general wishes, or with naming someone to speak for you, and build from there.
• Use a guide or workbook. Many MND/ALS associations and palliative care services offer plain-language guides that walk you through it step by step.

Who can help:

• Your ALS/MND team or doctor. They can explain the medical choices (like breathing or feeding decisions) clearly and neutrally, so you can think them through with good information.
• Palliative care professionals. They are experienced in these conversations and often very skilled at supporting them gently.
• A social worker, counsellor, or specialist nurse. They can help with both the practical and emotional sides.
• Your MND/ALS association. They offer guides, support, and can point you to local services.
• For the legal parts, the right professional depends on where you live. Your team or association can tell you who certifies or witnesses documents locally, and whether legal advice is useful.

A few tips:

• Involve the people close to you where you can. That matters most for anyone you might ask to speak for you. Shared understanding is much of the value.
• Go at your own pace. There is no deadline, and it is fine to pause and return to it. Teams do often suggest starting sooner rather than later, because communication and thinking can become harder over time, so waiting has a cost.
• Write down what you decide as you go, so it is not lost.

Because the legal documents and processes differ from country to country, ask your team or local MND/ALS association what applies where you live when you reach the formal steps. The next question covers making your wishes known and making sure they are followed.

Making a plan is only useful if the right people know about it and can act on it when needed. A few steps help your wishes actually be followed.

Record them in a recognised way

• Write your wishes down. Spoken wishes can be forgotten or disputed; a written record is clearer.
• Use the form that is valid where you live. Some preferences carry legal weight when set out in a particular document (the names and rules vary by country); others are valuable as a clear statement of your wishes even if not legally binding. Local advice tells you which is which.
• Appoint your decision-maker properly, in the way recognised locally, if you want someone to be able to speak for you.

Share them with the right people

• Give copies to the people who need them. That means your decision-maker, close family, your ALS/MND team, your doctor, and any hospital or service involved.
• Make sure your care team has it on record, so it is available when decisions are made. It should not be sitting in a drawer at home. Some places have registers or systems for this; ask locally.
• Talk it through with your decision-maker and family, so they understand not just what you decided but why. That helps them honour it confidently.

Keep it current

• Review it from time to time, and especially if your situation or views change. You can update it whenever you wish, and in most places you can withdraw it too. Ask locally what the formal steps are.
• Tell people if you change it, and replace old copies, so there is no confusion.

A useful check: ask your care team how your recorded wishes will be accessed and followed in practice, including in an emergency or out of hours. That is exactly the moment a plan needs to work.

Because the legal status, documents and registers differ by location, confirm the formal details with your team or local MND/ALS association. The next question gives you prompts to take to these conversations.

A few questions ready for your ALS/MND team, doctor, or a palliative care professional can make advance care planning easier to approach. Choose what fits where you are. You do not need to cover everything in one conversation.

Getting started

• How do I begin advance care planning, and is there a guide you would recommend?
• Who is the best person to help me with this?
• Can we take it gradually, over more than one conversation?

Understanding the choices

• Can you explain the treatment decisions that might come up, such as breathing support or feeding, so I can think them through?
• What would each option involve, and what are the trade-offs?
• (There are no wrong choices here. I just want to understand.)

Appointing someone to speak for me

• How do I formally appoint someone to make decisions for me if I cannot?
• What should that person know about my wishes?

Making it official and known

• What documents are recognised where I live, and how do I complete them?
• Who needs a copy? How will my team access my wishes when needed, including in an emergency?
• How do I change or update my plan later?

Support

• Is there emotional support for me and my family around these conversations?
• Can my MND/ALS association help with the practical and legal steps locally?

It helps to think beforehand about what matters most to you, and to involve the people closest to you. This is especially important for anyone you may ask to speak for you. Remember the legal details vary by location, so confirm those locally. The palliative care, breathing, feeding, and emotional support cards cover related topics you may want to explore alongside this.

Planning ahead often involves choosing people who can make decisions for you if there is ever a time you cannot make them yourself. There are usually two different kinds, and it helps to understand the distinction.

• A power of attorney for health and care (the names vary by place) lets a person you trust make medical and care decisions on your behalf if you are not able to. This sits alongside advance care planning, where you record what you would want.
• A power of attorney for finances lets someone manage your money, bills and property if you cannot. This is separate from health decisions.

A few practical points:

• They are separate, and you may want both. Health decisions and money decisions are different jobs, and they can be given to the same person or to different people.
• Choose people you trust, and talk to them so they understand your wishes and are willing.
• Set them up early. The rules vary, but in many places these can only be put in place while you still have the mental capacity to understand the decision and make it for yourself. Being unable to physically sign is usually not a barrier on its own, because many places allow someone else to sign at your direction and in your presence, or offer another route. Ask locally what applies, because waiting can close the option. Doing it sooner keeps you in control and takes a heavy weight off family later.

The exact names, forms and rules differ a lot from country to country and even within countries. This question explains the idea; for what applies where you live, get local legal advice. A solicitor, an MND association, or a social worker can point you to the right process. The rest of this card covers recording your care wishes, and the Finance & Insurance card covers money matters.

Alongside planning your care, many people want to sort out the practical and legal side: a will, and getting their affairs in order. It can feel daunting, but doing it removes a worry and takes a real weight off family later.

The main pieces people think about:

• A will. This records who you want to receive your belongings, money and property, and can name guardians for dependent children. Without one, the law decides, which may not match your wishes and can be harder for family.
• Powers of attorney. Naming people to make health and financial decisions if you cannot. This sits alongside advance care planning and is covered in the question on medical versus financial power of attorney.
• The practical paperwork. Knowing where key documents, accounts, passwords, insurance and important contacts are, and making sure someone you trust can find them.
• Letting people know. Telling the person who will carry out your wishes where everything is and what you want.

A few things that help:

• Start while it is easier. The rules vary by country, but in many places these documents must be made while you still have the mental capacity to understand the decision and make it for yourself. Being unable to physically sign is usually not a barrier on its own, because many places allow someone else to sign at your direction and in your presence, or offer another route. Ask locally what applies, and doing it sooner keeps you in control.
• Get the right help. A solicitor or legal adviser can prepare a valid will and the other documents. An MND association or social worker can often point you to local help, including low-cost options.
• Revisit if things change. Wishes and circumstances change, and documents can usually be updated.

The exact documents, names, and rules differ a lot from country to country, including who can inherit and how a will must be signed and witnessed. This question explains the idea; for what applies where you live, get local legal advice. The Finance & Insurance card covers money and cover, and the rest of this card covers your care wishes.