Planning end of life care

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

People severely affected by MS might have trouble with this. Speech difficulties, fatigue or memory problems can make it hard for them to express their wishes.

If the person with MS has never talked to their family or healthcare team about what they want to do or if those wishes have not been taken into account legally, decisions might be taken by healthcare professionals alone.

So, it’s a good idea to talk about these issues well in advance.

A decision needs to be made as to whether hospital is the best place for care or whether the person with MS would choose to remain at home or prefer another less 'acute' care setting, such as a hospice.

The new Mental Capacity Act 2005 which came into force on 1 October 2007 means everyone has the right to decide what care they receive now and in the future. For full details, go to the Ministry of Justice website.

This page looks at some of the things you might need to consider when making plans:

• Power of attorney
• Advance directives or ‘living wills’
• Advance statements

For more detailed information, download our MS Essentials publication ‘Support for People Severely Affected by MS’.

Power of attorney

Power of Attorney (POA) allows someone to appoint a person to take decisions on their behalf if they become unable to do so themselves.

This might include decisions about:

• healthcare and consent to treatment through a ‘welfare power of attorney’
• property and financial affairs through a 'continuing power of attorney’

Anyone can have POA - they do not have to be a lawyer. They could be a family member or someone else you know and trust. You can have more than one if you wish.

If you decide to nominate an attorney, it can be helpful to involve them in the process, because they will need to agree to act on your behalf and will take on a number of wider legal duties and responsibilities.

In England and Wales, the GOV.UK website has details of how to appoint someone as your attorney. In Scotland contact the Office of the Public Guardian – Scotland. In Northern Ireland Citizens Advice Bureaux can provide further information.

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Advance directives

Everyone has the option to decide in advance to refuse treatment to keep them alive. This is called an advance directive and is also known as an advance decision or ‘living will’.

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

Advance directive 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 directive is legally binding if it meets the following conditions:

• you are over 18
• it is clear
• it was made when you were mentally competent and you had been fully informed about the consequences of refusing treatment, including the fact that it may hasten death
• you intended the refusal to apply in the situation that has arisen
• the decision was made by you, on your own and not under the influence of others
• For more information on what needs to be included in advance directives go to our MS Essentials publication ‘Support for People Severely Affected by MS’

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Advance statements

An advance statement is a request for the types of medical intervention, treatments and care you wish to receive in case you lose capacity to express your views in the future.

For example, if you are concerned that you may not be resuscitated in certain situations where breathing or circulation has stopped, you may want explicitly to state that you wish to be resuscitated. You might also wish to specify the type of residential care you may be placed in.

These statements are not legally binding but health and social care professionals are obliged to consider them. 

Advance statements have nothing to do with euthanasia or assisted suicide. Advance directives can allow you to take some control over end-of-life decisions, which may involve life-prolonging treatment. Advance directives do not permit illegal actions and can't include taking measures to end a person's life. At present, euthanasia and assisted suicide are illegal under British law.

For detailed information on advance directives or statements download our MS Essentials publication ‘Support for People severely affected by MS’. 

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