What is a Living Will or an Advance Care Plan (ACP)?

Kindly written by Debbie Callow RMN

An Advance Care Plan, known as an ACP, is an umbrella term that contains a plan made in advance of reaching the end of your life that details key wishes, preferences, and legal aspects of your care needs. It was previously known as a Living Will, some people may still know it as that, but this is a more outdated term. It is important for us all to complete but even more so for a person experiencing dementia as there is a risk of losing mental capacity as the disease progresses.

I’m Dementia Debbie, The Dementia Coach and I’m a registered mental health nurse specialising in supporting families facing dementia with tough transitions through their dementia journey. I believe education is key to helping the world understand dementia, after all knowledge is power, so let me help you understand some basics about what to consider in an ACP.

An ACP can encompass an array of documents such as an Advance Statement, Lasting Power of Attorney (LPA), Do Not Attempt Cardiopulmonary Resuscitation (DNACPR), Advance Directives (different from an advance statement). It can also include information related to after death such as Will information or funeral arrangements. It’s important to know that an ACP helps guide professionals and families in the right direction when a person has lost mental capacity and the team are trying to act in the person’s best interests. If a person still has mental capacity, they may wish to use their ACP to help them make decisions, as it allows you to consider tough decisions ahead of time. Trying to decide when an event is occurring can often mean our judgement is clouded as our emotions are heightened at this time. The ACP helps take away from that decision-making process at those challenging times when it can be difficult to think straight.

Health and Social Care professionals will often use a lot of jargon, sometimes without even realising, and you may not know what that abbreviation or word means. Always ask a professional what they mean if they use a term that you are not sure about. Let me explain now what all those documents I listed entail:

Advance Statement

A personal statement of your wishes when you reach the end of your life, it is mainly focused on pre-death but can include details of where your Will is or who holds it, as well as your funeral wishes. People often want to include things like “I wish to be pain free”, “I wish to have my family around me”, “I wish to always be treated with dignity and respect”, “I wish to be cared for at home”. Consider though the deeper meaning to these statements, for example, what do you mean by “pain free”, do you want to be so dosed up on medications you are free from pain but not really aware of who is in the room, or would rather tolerate some pain so you can be more aware of your surroundings? Everyone will feel differently about this and it’s important to always consider what a statement really means to that individual. Similarly, someone who wishes to remain at home, that can be option A, but what if it was not safe to remain at home, under what circumstances would you consider an option B and C? Put these variations to your preferences in your Advance Statement, it can save a lot of heartache and guilt later on if people already know what you want if you couldn’t stay at home for some reason. You can find a template to complete an ACP on the Dementia UK website. (1)

LPA (Lasting Power of Attorney)

A legal document that enables a person with mental capacity to appoint a person/s to speak on their behalf about important financial and or health matters. If a person has already lost mental capacity, then they cannot get an LPA and may need a representative to apply to the Court of Protection to become a Deputy. There are 2 types of LPA, Financial & Property which can be active before a person loses capacity and Health & Welfare which is only applicable once a person has lost capacity. If an appointed Attorney is active, they should always be advocating for what that person would want and in their best interests. I would always recommend getting legal advice to complete these documents. A solicitor such as, Total Legacy Care, will talk through many scenarios with you to ensure the LPA is strong and lasting. You can find information about all of these matters at the Office of the Public Guardian. (2)

DNACPR (Do Not Attempt Cardiopulmonary Resuscitation)

This is another legal document and the biggest misconception about DNACPR is that it means professionals are giving up on the person, it does not mean that! It only applies in the event of the heart stopping and whether you would then want CPR to try and restart your heart. It does not apply to any other health matter or care need.

It is a medical decision whether to put one in place but should always be done with consultation with the patient (if possible) and family. I think the easiest way to think about whether or not you or someone you love might need a DNACPR is;

Would it feel wrong to you to see someone aggressively pushing up and down on that person’s chest?

If you feel yes it would, speak to the GP about getting one put in place.

CPR is not a gentle process, it often causes bruising, skin tears, sometimes broken bones. CPR is only successful in 10% of cases that happen outside of hospital (3) and is 3 times less likely to be successful on someone with a cognitive impairment. (4)

Advance Directives

Another legally binding document and are about refusing life sustaining treatment. Not many people have them as the wording must be extremely precise and include phrases such as “even if my life is at risk as a result”. An Advance Directive informs of the treatment being refused and the circumstances in which you wish to refuse that treatment.

For example, specific treatment: I wish to refuse artificial feeding through a tube to my stomach or IV, circumstances: I wish to no longer receive food or fluids through a feeding tube when I can no longer swallow safely due to my dementia, even with the support of others, even if my life is at risk as a result.

The reason to put in your health condition is that this same sentence may not apply in different circumstances. A person with dementia may want artificially feeding if the reason they cannot eat is from a stroke which they are expected to recover from.

Advance Directives should always be discussed with your specialist consultant involved and with legal support.

I offer support to complete an Advance Statement and can talk through the other aspects discussed. You can follow me on Instagram @dementiadebbie or visit my website https://thedementiacoach.org/.

Reference resources

Dementia UK ACP template https://www.dementiauk.org/wp-content/uploads/2020/07/DUK_ACP_form_editable_online.pdf
Office of the Public Guardian https://www.gov.uk/government/organisations/office-of-the-public-guardian.
Resus Council UK https://www.resus.org.uk/home/faqs/faqs-basic-life-support-cpr
Arcand M. End-of-life issues in advanced dementia: Part 1: goals of care, decision-making process, and family education. Can Fam Physician. 2015;61(4):330-334. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4396757/

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Will I have to pay Inheritance Tax on gifts & money given in my lifetime?

Gifting can be very generous and is sometimes seen as a way to reduce the amount of money in your Estate so that you don’t have to pay Inheritance Tax when you pass BUT…

Did you know that YOU MAY HAVE TO PAY INHERITANCE TAX on any gifts made in the 7 years prior to your death?

You DO NOT have to pay Inheritance Tax on the following gifts:

up to £3,000 given in any one tax year

up to £1,000 for wedding gift (£5,000 to a child or £2,500 to a grandchild)

payments to help with living costs (of someone under 18 or elderly relative)

gifts to charities or political parties

gifts up to £250 (although this cannot be used in conjunction with the gift of £3,000 mentioned above)

gifts out of surplus income* (word of warning to come on this one!)

Gifts out of Income

Giving someone a gift of money from your surplus income is a way to reduce your own estate and therefore potentially reduce your Inheritance Tax liability.

HOWEVER (here is your word of warning that we mentioned above!)…

You must be able to demonstrate that it is ‘surplus income’ and upon your death your Executors will have to complete a separate income and expenditure form within your Inheritance Tax Return to prove that this was surplus income in order that it is exempt from Inheritance Tax.

Potentially Exempt Transfers

We mentioned at the outset that you may have to pay Inheritance Tax on any gifts made in the 7 years prior to your death…

Potentially Exempt Transfers (affectionately known as PETs😉) are gifts given during your lifetime that MAY become exempt from Inheritance Tax IF you survive for SEVEN YEARS after giving the gift (or PET). There will then be NO Inheritance Tax to pay.

However, if you do not survive for 7 years after giving the gift, then Inheritance Tax will be charged at 40% if given within THREE years of your death and this then tapers as follows:

32% for gifts given 3-4 years before death;
24% for gifts given 4-5 years before death;
16% for gifts given 5-6 years before death;
8% for gifts given 6-7 years before death.

Gifts with a Reservation of Benefit

Gifts with a Reservation of Benefit may also be referred to as GROBs.

GROBs are gifts that are given but the person that receives the gift does NOT benefit from full enjoyment of the gift immediately.

A common example of this is where parents ‘gift’ or transfer their house to their children (in the hope of saving on Inheritance Tax) but continue to live in the house rent-free.

This is a GROB as the children are not taking full possession of the property and the parents still have a benefit (despite ‘gifting’ the property) and so Inheritance Tax WILL BE PAYABLE upon death.

Hotchpot Rule

The Hotchpot Rule ensures equal distribution of your assets, taking into account any advancements or gifts during your lifetime.

For example, if you have three children and give one of these £50,000 during your lifetime, and want to ensure that this is reduced from any Inheritance that they receive so that equal monies are received by all three children you can include a HOTCHPOT RULE clause within your Will.

In practice, if you had three children and advanced one of those £50,000 during your lifetime, then upon your death there was £850,000 to be split between three children, the £50,000 advanced during your lifetime would be added into the calculation, meaning each child who has received no advancement would receive £300,000 each and the child that had received the £50,000 previously would receive £250,000.

Presumption of Advancement

Presumption of Advancement can seem somewhat archaic but it does still apply today!

Put simply, a LOAN has to be repaid but a GIFT does not, the same applies upon death.

This can be very tricky if there is nothing left, by the deceased, in writing in relation to money given away during their lifetime, that is when the PRESUMPTION OF ADVANCEMENT can come in and cause problems…

PRESUMPTION OF A GIFT occurs on the following:

money from husband to wife
money from father to child
money from man to fiancee

PRESUMPTION OF A GIFT does NOT occur on the following:

money from wife to husband
money from mother to child
money between cohabiting couples

You see why we say this can seem somewhat archaic! We don’t make the law…we just follow it😉

If you would like to have a free chat about Lifetime Gifts or Wills, please contact us on info@TotalLegacyCare.co.uk or 01727 865 121

Leah Waller

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Month: January 2021