Frequently Asked Questions
- What is an Advance Decision?
- Who should make an Advance Decision?
- What’s needed to make an Advance Decision ‘valid’?
- Is my old ‘Living Will’/Advance Decision still valid?
- What is ‘mental capacity’ – and why does it matter?
- Will my Advance Decision ‘work’?
- What is a Lasting Power of Attorney?
- Is a Lasting Power of Attorney the same as an Enduring Power of Attorney?
- Do I need both an Advance Decision and a Lasting Power of Attorney for Health & Welfare? What’s the relationship between them?
- Do I need both an Advance Decision and ‘Do Not Resuscitate’ form? What’s the relationship between them?
- What’s the difference between an Advance Decision, an Advance Statement, and an Advance Care Plan?
- What’s the difference between a Will and a ‘Living Will’/Advance Decision? Why can’t I just keep my ‘Living Will’/Advance Decision with my Will?
- What’s the difference between an Advance Decision and medically-assisted dying?
- What kinds of training does ADA offer, and who is it for?
- What kinds of research does ADA do/support?
If you don’t find the answer to your question below, please contact us.
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What is an Advance Decision (AD)?
It’s a legally-binding document in which you specify the medical treatments you would wish to refuse if you lost the ability to make or communicate such decisions in the future (e.g. if you were in a coma or had severe dementia).
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Who should make an Advance Decision (AD)?
Anyone who wants to exercise choice and control at the end of life. The only legal requirements are that you are over 18, and that you are able to understand, remember, and weigh up the decisions you are making. ADs can be particularly useful for anyone with a degenerative condition (e.g. motor neurone disease, dementia) who wants to plan ahead. They also provide a measure of choice and control for anyone who fears a sudden loss of decision-making capacity (e.g. through a heart attack, stroke, road traffic accident or sporting injury).
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What’s needed to make an Advance Decision (AD) ‘valid’?
You must be over 18, and able to understand, remember, and weigh up the decisions you are making. To be valid, the AD must set out, in writing, the treatments you wish to refuse and the circumstances in which you wish to refuse them. It must also be signed and witnessed, and include the sentence “I maintain this refusal even if my life is at risk/shortened as a result”.
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Is my old ‘Living Will’/Advance Decision (AD) still valid?
Only if it is signed, witnessed and includes the sentence “I maintain this refusal even if my life is at risk/shortened as a result”. Pre-2005 ADs are often not valid.
If you’re not sure, why not ask us to check it for you?
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What is ‘mental capacity’ – and why does it matter?
It’s the ability to understand, remember, and weigh up the decisions you are making. It matters because if you lack mental capacity (according to this definition), you cannot make a valid Advance Decision (AD). If your mental capacity is – or could be - in any kind of doubt (e.g. if you are depressed or have had a dementia diagnosis), we advise you to get a statement of capacity from your GP, or other appropriate health professional (see the sample ADs for ‘Brian’ and ‘Dawn’ under the ‘Make an AD’ tab). If your mental capacity is uncertain, or fluctuating, you have the right to support to see if you can achieve the capacity to make a valid AD. If you need more information about this, ask us.
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Will my Advance Decision (AD) ‘work’?
An Advance Decision is legally-binding and healthcare professionals cannot lawfully administer any treatments you have refused. Some ADs have been upheld by judges in court – who ruled, for example, that a man with motor neurone disease who had lost the ability to communicate must have his ventilator removed, as his AD had specified. You maximise the chances of your AD working by making sure it is valid and applicable (see above). You should also make sure that people know about it - in particular, get it on your medical notes. For other ways to maximise effectiveness, see the ‘hints and tips’ and ‘next steps’ pages under the ‘Make an AD’ tab.
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What is a Lasting Power of Attorney (LPA)?
It’s a legally-binding arrangement in which you give decision-making powers to someone else (rather than making decisions, in advance, for yourself, as in an Advance Decision). There are two kinds: an LPA for Health & Welfare (which covers some of the same ground as an AD, but is broader in remit), and an LPA for Property & Finance (which is limited to financial matters). If you choose to have both an AD and an LPA for Health & Welfare, it is important to consider the relationship between them (see below).
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Is a Lasting Power of Attorney (LPA) the same as an Enduring Power of Attorney (EPA)?
No. An LPA is a more recent form of provision and there are two kinds: an LPA for Health & Welfare, and an LPA for Property & Finance (see also Q7 above). The older EPA only covers financial matters. If you want to give someone decision-making powers for health matters, you need an LPA for Health & Welfare.
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Do I need both an Advance Decision (AD) and a Lasting Power of Attorney (LPA) for Health & Welfare? What’s the relationship between them?
You can choose to have just an AD, just an LPA for Health & Welfare, or both. An LPA for Health & Welfare is broader in remit than an AD (in that it includes issues such as your living arrangements, dietary preferences, and so on) but it covers the same ground insofar as it addresses your medical treatment, particularly if you give your Attorney the power to make decisions about life-sustaining treatment. If you choose to have both an AD and an LPA for Health & Welfare it is important to ensure that they work together and that one does not invalidate the other. We strongly recommend that you ask us for advice about this.
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Do I need both an Advance Decision (AD) and ‘Do Not Resuscitate’ (DNR) form? What’s the relationship between them?
Your AD may include a refusal of resuscitation (DNR), but it need not. If it does, we strongly recommend also asking your GP to complete an additional form which records this decision (often known as a DNAR or DNACPR form), and to lodge it with your local Ambulance Trust. The mechanism for this is different in different Ambulance Trusts.
Note: There are also differences in terminology for this:
- ‘DNR’ means ‘Do not resuscitate’
- ‘DNAR’ means ‘Do not attempt resuscitation’
- ‘DNACPR’ means ‘Do not attempt cardio-pulmonary resuscitation’
These all mean the same thing: when your heart has stopped, paramedics/doctors will provide care to keep you comfortable and not in pain, but will not attempt to restart your heart.
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What’s the difference between an Advance Decision (AD), an Advance Statement (AS), and an Advance Care Plan (ACP)?
Advance Decisions are legally-binding. Advance Statements and Advance Care Plans are not legally-binding. An Advance Statement (or Values Statement) lays out the wishes, values and beliefs that underpin your AD, providing healthcare providers (and others) with a basis for understanding the decisions you have made in terms of what is important to you as an individual. An AS is often included in an AD, or appended to it (see the sample Values Statements included in the ADs for ‘Ann’, ‘Brian’, ‘Chris’ and ‘Dawn’ under the ‘Make an AD’ tab), although it is not in itself legally-binding. An Advance Care Plan is a more extended account of your choices and preferences in relation to end-of-life care, including matters such as dietary preferences, leisure activities, and the like. Some ACPs include an AD, and although the ACP is not legally-binding in its entirety, the AD component of it is legally-binding (provided that it has been properly completed such that it is valid and applicable – see above).
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What’s the difference between a Will and a ‘Living Will’/Advance Decision (AD)? Can I keep my ‘Living Will’/AD with my Will?
Your Will only comes into effect AFTER your death. Your ‘Living Will’ - now formally called an Advance Decision (AD) - comes into effect BEFORE you die: as soon as you lose the ability to make and communicate your decisions about your medical treatment. In order to be available when needed, your ‘Living Will’/AD needs to be kept with your medical records, (which will be accessed when medical treatment is considered) rather than with your Will (which will not be accessed until after you die).
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What’s the difference between an Advance Decision (AD) and medically-assisted dying?
An AD is a legally-binding document in which you specify the medical treatments you refuse if you lose the ability to make or communicate such decisions in the future. A health professional who follows the law in respecting your wishes to refuse treatment is not assisting in your death – even though your refusal of treatment may result in your death. Medically-assisted dying (in which a health professional provides or administers the medication necessary to end your life) is not lawful in the UK (although there are campaigns to make it so: see http://www.dignityindying.org.uk/).
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What kinds of training does ADA offer, and who is it for?
We offer training on Advance Decisions to professional groups involved in delivering healthcare (e.g. GPs, neurologists, psychologists, social workers, first responders, nurses, care home staff). Sessions can last from an hour to a day, depending on your needs. There is more information under the ‘Training’ tab. Please contact us if you would like to discuss arranging a training session.
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What kinds of research does ADA do/support?
Our research interests focus, in particular, on how to encourage more people to write an Advance Decision, and how to overcome the barriers they face in trying to do so. If you would like to be involved in – or to commission – a research project, please contact us. You can also find a list of our publications under the ‘Research’ tab.