End of Life Care
End of life care is a term used to cover the issues you need to think about and plan for, when you are approaching death. It is a very wide area that covers many topics. This leaflet deals with advanced care planning in the UK. In particular, it covers three subjects:
- Lasting power of attorney (LPA).
- Advance decisions (previously known as advance directives).
- Advance statements.
Lasting power of attorney
Nobody really wants to think about the end of their life, but like taxes and taking the bins out, it's something you can't avoid. I don't think anyone who thinks about the arrangements for their end of life care regrets doing so. This often hits home when you have to deal with the death of a loved one. If they have made plans, it makes things easier for everyone.
You may have gone as far as thinking about the order of service at your funeral, but have you really thought about what type of health and social care you would like at the end of your life? When the time comes, your relatives may be able to look after your interests, but there are instances when it may be better to appoint someone on an official basis to make these sorts of decisions.
The best way of doing this is by completing and registering a lasting power of attorney (LPA) form. This is a legal document allowing you ('the donor') to give one or more people ('the attorney(s)) the right to take decisions for you.
You may also come across the term ordinary power of attorney (OPA). This is only relevant if you still have your marbles as defined by the Mental Capacity Act 2005 ('have capacity') but want someone to look after your financial affairs for you.
So an LPA can be drawn up to appoint people to take decisions about your health and welfare for you when you lose mental capacity or when you no longer want to take those decisions yourself. This might cover such things as whether you want burgers or salads, your medical treatment and whether you should go into a care home.
I told my kids to put me in a home as soon as I lose capacity. They said: 'Dad, we already have weekly meetings'.
A separate LPA can be drawn up to cover finances and property.
You've got to be 18 years old or over to make an LPA, and have capacity at the time you do it.
You can appoint a friend, relative or professional (for example, a solicitor) but make sure you choose an attorney you know well - someone you can trust and who is a responsible person. That narrows the field for me quite a bit.
And they have to be over 18 years old and able to make decisions for themselves as well.
You can download your own forms off t'internet or get them sent to you in the post. Look at the GOV.UK website (see below) for more information. You can also get a solicitor to do it if you're not good with forms but they will, of course, charge you.
Once you've filled in the forms you'll need to register them with the Office of the Public Health Guardian. You'll have to pay a fee which at the moment is 82 quid. If you're on a low wage or on benefits you may be able to pay a lower fee or nothing at all. You don't have to register straightaway but don't leave it until you're on your last legs. Your attorney can register for you but if you don't want them to and you still know what day it is, that's not going to happen.
Read more about lasting power of attorney.
An advance decision lets people know what sort of medical treatment you wouldn't want (as opposed to an LPA which tells people what sort of care you would want) when the time comes that you lost capacity.
It's also sometimes called a 'living will' although it involves healthcare rather than money or property. This destroys my fantasy of having my relatives sitting around watching a video of me telling them who gets my prized thrash metal albums when the time comes.
The decision can cover all the treatment you might need. For example, as well as the bit about not having your chest thumped if your heart stops beating, it can also cover;
- Whether or not you want fluids or nourishment through a drip
- Whether you want life-saving treatment if you're brain damaged
- Whether you want treatment forbidden by your religion or culture.
The legal position
In England and Wales, if a medical professional gives you treatment against the wishes you express in an advance decision, the doc can find themselves in the dock.
It doesn't need to be written down (unless you are refusing life-saving treatment) but if you put it in writing it's less likely to be challenged.
Scotland and Northern Ireland have a different arrangement. Here advance decisions are governed by common law, but if it was made by an adult with capacity and clearly sets out the person's intentions, it would in all probability be accepted as legally binding by a court.
While you're still with it, anything you say overrides an advance decision, as I keep telling my kids.
You may hear the term 'advance statement'. This is just an expression of your wishes, and may reflect your values, principles and religious beliefs. It's not legally binding but it may be useful if you've lost capacity and a doctor has to take decisions on your behalf.
Limits of an advance decision
You can't use an advance decision to ask for a certain treatment, request something illegal (such as assisted suicide), appoint someone to take decisions for you (unless they are given lasting power of attorney), or refuse treatment for a mental health condition.
Your doctor can refuse to follow an advance decision if:
- You make changes which invalidate the decision (such as changing to a religion which forbids the refusal of treatment)
- Treatment comes along which is better than that which existed before the decision was written (unless you expressly refuse such advances)
- The wording doesn't apply to your current illness.
Also, a decision may not be valid if it's written but you don't sign it, it looks dodgy (for example, if it wasn't witnessed), it's suspected you were under pressure, or it's thought you were ga-ga when you made it.
Read more about the whys and wherefores of advance decisions.
Drawing up an advance decision
Before making an advance decision you ought to think about talking it over with your loved ones (and even your relatives). A checklist of things to consider may help. Examples of the sort of words you want to use in an advance decision are available so you don't need to start from scratch.
Who should make an advance decision?
Anyone aged over 18 (16 in Scotland) who is of sound mind can do this. People who often consider this option are those with advanced cancer, those who have a progressive disease of the nervous system, and those with early dementia who still have capacity.
Read more about how to draw up an advance decision.
Office of the Public Guardian
Telephone: 0300 456 0300; Textphone: 0115 934 2778; From abroad: +44 300 456 0300
Monday to Friday 9 am-5 pm (except Wednesday, 10 am-5 pm).
What is a lasting power of attorney?
In general, decisions about your health and social care can be taken by the professionals looking after you. Your relatives will usually be able to look after your best interests when it comes to general decisions about your daily living.
However, there may be circumstances when you feel it would be best to appoint someone you trust on an official basis to take these decisions for you. This is done by completing and registering a lasting power of attorney (LPA) form. This is a legal document in which you ('the donor') appoint one or more people ('the attorney(s)') to take decisions for you.
An LPA differs from an ordinary power of attorney (OPA) in that it is intended for people who are likely to lose their mental capacity. An OPA is most commonly used by people who have a physical illness and want someone to look after their financial affairs.
An LPA can be drawn up to cover decisions about your health and welfare. If you want to appoint someone to take decisions about your finances and property, this will require a separate LPA. You can have both types of LPA drawn up if you wish.
Typical decisions you may allow a person with a health and welfare LPA to take include:
- Your daily diet
- What medical treatment you receive
- Whether you should go into a care home
You need to be 18 or over in order to make a LPA. You also need to be able to make your own decisions at the time the LPA is drawn up.
Your attorney can be a family member, an acquaintance or a professional (for example, a solicitor). When choosing an attorney think about how well you know them and how much you trust them. How well do they look after their own affairs? Would they be happy to accept the responsibility?
You cannot appoint someone who is under 18 or who is unable to make their own decisions.
You do not need to involve a solicitor in completing the forms although some people prefer to do so. You can fill in the forms on the internet, download and print them out or get them sent to you in the post. You can get further information and download the forms from the GOV.UK website (see below).
Once you have completed the forms you need to register them with the Office of the Public Guardian (see below). A fee is payable (currently £110, reductions available in certain circumstances). You do not need to register the LPA straight away but you should do so well before it is needed. Your appointed attorney(s) can register on your behalf at any time. However, if you feel that the registration is not in your best interests at the time and you have mental capacity, you can object to this.
What is an advance decision?
An advance decision is a statement which explains what medical treatment you would not want to have in the future if ever you are not able to make decisions for yourself. This statement would come into play if it was decided that you lacked capacity as defined by the Mental Capacity Act 2005. It is different from a lasting power of attorney (LPA) which concerns what sort of care you do want.
It is popularly known as a 'living will' but unlike a proper will it is not concerned with property or finances, only with healthcare.
It can deal with all future treatment, not just that which may be immediately life-saving. Types of treatment which you may want to cover in an advance decision if you lose mental capacity include:
- Whether you want fluids or feeding (nutrition) through a drip.
- Whether you want to be revived (resuscitated) if your heart stops beating (cardiopulmonary resuscitation, or CPR).
- Whether you want life-saving treatment if you have brain damage from a stroke, head injury or dementia.
- Any other types of treatment prohibited by your culture or religion (for example, blood transfusion for a Jehovah's Witness).
The legal position
An advance decision is legally binding in England and Wales in the sense that if a doctor gave you treatment against the wishes you expressed, they would face legal action. Except in the case where you decide to refuse life-saving treatment, it does not have to be written down. However, most are written down and a written document is less likely to be challenged.
In Scotland and Northern Ireland the situation is somewhat different. Advance decisions are governed by common law rather than legislation. However, providing the decision was made by an adult with capacity and clearly sets out the person's intentions, it is highly likely that a court would consider it legally binding.
Whilst you still have mental capacity, your views overrule anything you may have put in an advance decision.
You may sometimes see the term 'advance statement'. This is an expression of a person's desires and may refer to your values, principles and religious beliefs. It is not legally binding but may act as a guide to a doctor who has to make a decision on a patient's behalf at a time when the patient lacks mental capacity
What are the limits of an advance decision?
You cannot use an advance decision to:
- Ask for a particular medical treatment.
- Ask for something that is illegal (for example, assisted suicide).
- Choose someone to make decisions for you, unless that person is given lasting power of attorney (LPA).
- Refuse treatment for a mental health condition.
A doctor may not follow an advance decision if:
- You make changes which make the decision invalid (for example, a change to a religion which prohibits the refusal of treatment).
- Better treatment has been discovered since the decision was issued (unless you say in it that you don't want to benefit from such advances).
- The wording is not relevant to your current illness.
A decision may not be valid:
- If it is written but not signed.
- If there is reason to doubt that it is authentic (for example, if it was not witnessed).
- If it is felt that you were under pressure when you made it
- If there is doubt about your state of mind at the time you made it.
Should I make an advance decision?
Before drawing up an advance decision it is important that you think about discussing it with your nearest and dearest. The following checklist may help:
|Matters to consider when planning an advance decision|
|Opinion about the following situations:||Would prefer to die||Would probably prefer to die||Uncertain either way||Would probably prefer to live||Eager to stay alive|
|Permanently paralysed but able to relate to others.|
|Totally dependent on others. Needs to be fed.|
|Aware but unable to communicate.|
|Confused and very poor memory.|
|Constant uncontrolled pain.|
|Brain damage. In a coma. If regained consciousness, markedly impaired.|
|Terminal illness - not necessarily cancer.||
An example of the sort of wording you may want to use in an advance decision is as follows:
I, (name) of (address) wish the following to be considered in the event of my incapacity to give or withhold consent for medical intervention:
If ever I am unable to communicate and have an irreversible condition and I am expected to die in a matter of days or weeks, or if I am in a coma and not expected to regain consciousness, or if I have brain damage of disease that makes me unlikely ever to recognise or relate to people then I want treatment only to provide comfort and relieve distress, even if this may shorten my life. I do not want treatment that can only prolong dying.
I consent to any acts or omissions undertaken in accordance with my wishes and I am grateful to those who respect my free choice. I reserve the right to revoke or vary these conditions but otherwise they remain in force.
If I am certified brain dead, should any of my organs be of value to others, I give consent to their removal for the purpose of transplantation.
- State where copies may be lodged.
- The person must sign and date the document.
- Beneath this may be two signatories, also with dates below a statement to the effect that the above signed in their presence and was, to the best of their knowledge, under no duress and of sound mind. They also believe that they will not benefit from the estate.
Who should make an advance decision?
An advance decision can be made by anyone who is aged over 18 years (16 in Scotland), is of sound mind and cares about the issues involved. Some people may be especially likely to choose the option. For example, those with cancer which cannot be cured, those with a progressive disease of the nervous system and those with early dementia who are still of reasonably sound mind.
Further reading & references
- Menon S; The mental capacity act: implications for patients and doctors faced with difficult choices. Ann Acad Med Singapore. 2013 Apr;42(4):200-2.
- Advance decision (Living wills); Alzheimer's Society
Disclaimer: This article is for information only and should not be used for the diagnosis or treatment of medical conditions. Patient Platform Limited has used all reasonable care in compiling the information but makes no warranty as to its accuracy. Consult a doctor or other healthcare professional for diagnosis and treatment of medical conditions. For details see our conditions.
Dr Laurence Knott
Dr Hannah Gronow