Planning ahead for the care you want

Everyone with MS has the right to make choices about the care they receive now, as well as in the future.

There are ways to record your wishes in case you can’t express them when you really need to. That includes power of attorney, advance decisions and advance statements.

These can be shared with loved ones, carers and health professionals – including on your health record if you choose.

It makes sense to talk about these issues well in advance. If you’ve never talked to your family or healthcare team about what you want to do, or recorded these wishes legally, decisions might be taken by healthcare professionals alone.

Make sure the people who need to know your wishes also know where to find them – otherwise they can’t be used when they’re needed.

Advance care planning

Power of attorney

The two types of Power of attorney (POA) let you appoint a person to take decisions on your behalf if you become unable to do so yourself.

This might include decisions about:

healthcare and consent to treatment through a ‘lasting power of attorney for health and welfare’
property and financial affairs through a 'finance and property power of attorney’

Anyone can be given POA. They’ll be called the ‘attorney’, but they don’t have to be a lawyer. They could be a family member or someone else you know and trust. And you can have more than one.

If you decide to nominate an attorney, they’ll need to agree to act on your behalf, taking on some legal duties and responsibilities. One important thing to remember: a power of attorney only becomes active after you register it, so don't forget to do that.

Find out more about appointing a power of attorney in your nation:

What are advance directives?

Everyone has the option to decide in advance to refuse treatment to keep them alive. This is called an advance decision or, in full, an Advance Decision to Refuse Treatment or ADRT. In Scotland, it's called an advance directive. You might also hear this called a ‘living will’.

If you decide to do this, it must be in writing - signed and witnessed.

Advance decisions cover things like:

cardiopulmonary resuscitation (CPR) for heart failure
life support machines (ventilatory support) for breathing difficulties
artificial feeding tubes if you can no longer eat or swallow safely (called 'percutaneous endoscopic gastrostomy' or PEG tubes for short)

An advance decision doesn’t allow for euthanasia or assisted dying or suicide.

As long as it follows how it should be written, an advance decision in England, Wales and Northern Ireland is legally binding. In Scotland, the advance directive is not legally binding, but medical staff should take it into account.

An advance decision may be needed with no warning during a medical emergency. So think how to make sure medical staff know it exists. If you can’t carry one with you, make sure family, friends or neighbours have a copy, on their phone for example. Or alert medics by wearing a bracelet that tells them. Or use the ‘message in a bottle scheme’.

Do Not Attempt Resuscitation (DNAR) orders

A Do Not Attempt Resuscitation (DNAR) order tells doctors you don’t want to go through procedures that could potentially keep you alive, if you become ill enough to need it. For example, life support machines or cardiopulmonary resuscitation (CPR) for heart failure.

So a DNAR order could be part of an ‘advance decision’ you prepare (an ‘advance directive’ in Scotland). During the early months of the COVID-19 pandemic, DNAR orders were mentioned to some people with long-term conditions including MS.

A doctor should always explain why they have mentioned a DNAR order. Having MS in itself should not be the reason.

The only criteria that should ever be applied to a critical care decision is the chances the person will recover and return to a good quality of life. In the example of COVID-19, many people with MS have a strong likelihood of recovery.

Why would anyone sign a DNAR order?

Some people decide to sign a DNAR order if the life-saving procedure is very high risk for them, or is likely to lead to unwanted complications. Instead of having the procedure, they choose palliative care and spending time with loved ones.

This is obviously a big decision which involves you and your loved ones, and needs clear information from health professionals.

You have the right to sign a DNAR, never an obligation - you should not be pressured to sign a DNAR in any circumstances. You equally have the right to make clear that you definitely want critical care if it is available – although, as with most of emergency medicine, doctors have the right to make the final decision.

Advance statements

An 'advance statement' describes your wishes and preferences that might affect the care you want in the future - in case you can’t tell them yourself at the time. These statements are not legally binding but health and social care professionals must consider them.

An advance statement can include things like:

where you wanted to be treated (at home, in hospital, in a hospice or nursing home)
religious or other beliefs
food and drink, clothes, or music preferences
whether you prefer a bath or a shower
who you’d like to visit you
who you’d want a care professional to speak to about your care
what should happen with any pets

It's helpful to write this information down, so people can find it and refer to it.

It’s a good idea to make an Advance Statement as well as an Advance Decision (Living Will) and a health Power of Attorney. That way all situations are covered. The Advance Statement is then backed by legally binding documents.

Wills

Dying without a will can cause problems (and expensive legal battles) for those you leave behind. Without a will the state decides what happens. This might not be what you wanted. For example, unmarried partners don’t automatically inherit if there’s no will. It can lead to costly legal fees to make a claim like that.

When you write a will, you can make it clear who you want to be the ‘executor’. That’s the person who oversees who gets what when you die. The executor also makes sure people follow your funeral wishes. It’s OK for you to leave things in your will to the executor.

When you write a will get a solicitor involved so that it’s clear and legally sound. A solicitor will write a will for free if you donate to charity. Find solicitors who do this in Scotland or across the UK

Read more about making a will