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 It was previously known as a Living Will, some people may still know it as that, but this is a more outdated term.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.