End of Life Care

Authored by Dr Laurence Knott, 10 Jul 2017

Patient is a certified member of
The Information Standard

Reviewed by:
Dr Hannah Gronow, 10 Jul 2017

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.

Clinical Editor's comments (September 2017)
Dr Hayley Willacy notes a recent change to the definition of advanced care planning with an emphasis on having conversations that communicate people's wishes:

'Advance care planning is a process that supports adults at any age or stage of health in understanding and sharing their personal values, life goals, and preferences regarding future medical care. The goal of advance care planning is to help ensure that people receive medical care that is consistent with their values, goals and preferences during serious and chronic illness'[1]  . Further high-quality information can also be accessed at the Gold Standards Framework website[2] .

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.

Advance statement

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.

Lasting Power of Attorney, GOV.UK

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).

Further reading and references

  • Menon S; The mental capacity act: implications for patients and doctors faced with difficult choices. Ann Acad Med Singapore. 2013 Apr42(4):200-2.

  • Advance decision (Living wills); Alzheimer's Society

  1. Rietjens JAC, Sudore RL, Connolly M, et al; Definition and recommendations for advance care planning: an international consensus supported by the European Association for Palliative Care. Lancet Oncol. 2017 Sep18(9):e543-e551. doi: 10.1016/S1470-2045(17)30582-X.

  2. Gold Standards Framework

Good MorningI hope you’re all well and please let me know if this is the wrong forum for posting my question.I am a male and approaching 50 years of age.  I was born with a whole host of problems:...

Health Tools

Feeling unwell?

Assess your symptoms online with our free symptom checker.

Start symptom checker