Making an advance statement for care
Understanding when and how to make an advance statement for care
When someone has a serious illness and is undergoing palliative care, there are several practical steps often needed to ensure everything is in place in case their condition worsens and they eventually lose the ability to communicate their wishes and care preferences. An Advance Statement for Care can help with this, as it is a tangible document that can summarise a person’s preferences, beliefs and values regarding their future care. This article will focus on:
- What is an Advance Statement for Care?
- The relevance of an Advance Statement for Care?
- The benefits of an Advance Statement for Care
- How do you draft an Advance Statement for Care?
At Home Instead, our aim is to help people age positively and in place by bringing expert care to their home. For nearly 20 years, we have been providing the highest standard of domiciliary care, and creating industry-leading training programmes for our Care Professionals that are accredited by nursing and medical professionals. Today, Home Instead is the world’s largest global home care network, supporting over 100,000 older adults with personalised, tailored care at home. So whatever questions you have about home care, Home Instead can help.
What is an Advance Statement for Care, and who is it for?
An Advance Statement for Care is very similar to an End of Life Care Plan, which can be drafted and updated as a person’s condition progresses.The Advance Statement for Care essentially tells the reader what you would like to happen if a time comes when you can no longer make decisions for yourself, and it can cover any aspect of your future health or social care. This could include:
- How you want any religious or spiritual beliefs to be reflected in your care
- Where you would like to be cared for, for example at home, in a hospital, in a nursing home, or in a hospice
- How you like to do things, for example if you prefer a shower instead of a bath, or like to sleep with the light on
- Practical issues, for example who will look after your dog if you become ill
This document itself can be as short or as long as you like, and should encompass your personal wishes, values, likes, dislikes and much more. By doing this, you can provide a comprehensive ‘handbook’ that gives medical professionals, carers and others more insight into what your wishes are likely to be in a certain situation. It is recommended an Advance Statement for Care is drafted for someone who has a terminal diagnosis, or if they have a condition that is likely to lead to their eventual passing, such as dementia. However, if someone does not expect to die – but this is a possibility due to having a serious condition like cancer – making an Advance Statement for Care can be useful in case they ever do lose the ability to share their wishes with the people around them.
What does it do, and why is it important?
An Advance Statement for Care is important because it protects your wishes and personal preferences when you cannot. If anyone involved in your care wants to make decisions that will go against what you have stated in your Advance Statement for Care, they will be required to justify this and record their reasons for doing so. This means in most cases, your wishes will be properly respected. There are a number of health conditions that could lead to someone losing their ability to share their wishes and care preferences, so the Mental Capacity Act 2005 was put in place to ensure that – if someone lacks the mental capacity to make a decision – someone trustworthy can be put in place to do this on their loved one’s behalf. Although some people choose not to make an Advance Statement for Care and leave decision making up to the medical professionals involved in their treatment, it is usually a good idea to have this in place for clarity as to what your wishes are. This will avoid any difficult discussion between your loved ones, especially if there is a disagreement about what care you require.
How is this different from the End of Life Care Plan, Power of Attorney, and Advance Decision To Refuse Treatment?
There are several documents needed (and recommended) to be put in place if a person is dealing with a serious illness, so it may be unclear to some people which ones they require, and how they differ. For ease, here is a brief summary of each:
- Advance Statement for Care: Relevant for those dealing with a serious illness that could lead to end-of-life care. This states the person’s care preferences and personal wishes, and allows a named loved one to take charge of their care if they are ever in a position where they can no longer share their preferences. An Advance Statement for Care is not legally binding.
- End of Life Care Plan: Relevant for those with a terminal diagnosis that will require end-of-life care. This states the person’s care preferences and personal wishes, and can be continually updated as long as the person is able to contribute to the decision-making around their care needs.
- Power of Attorney: Relevant for anyone dealing with a serious illness who would like to ensure a trusted loved one can make important decisions on their behalf regarding their health, wellbeing and financial matters (depending on the type of Power of Attorney put in place). This simply states the person that will be in charge of acting in their best interests when they can no longer make decisions themselves.
- Advance Decision To Refuse Treatment (sometimes known as a Living Will): Relevant for those dealing with a serious illness that could lead to end-of-life care. This states what the person does not want to happen in the event they can no longer make decisions – such as life-sustaining treatment – and names the person who should manage their care if they are ever in a position where they can no longer make decisions for themselves.
Is an Advance Statement for Care a legally binding document?
No, an Advance Statement for Care is not legally binding but anyone who’s making a decision about your care must take it into account.
What should be included in an Advance Statement for Care?
A number of things can be included in an Advance Statement for Care, such as:
- Your care requests, so everyone knows what you would like to happen during care
- Your personal beliefs and values, so everyone involved in your care knows to respect these throughout the process
- Where you want care to take place, so you are never moved to a location you are unhappy in
- Who you would like present during your care, so you can ensure your loved ones are present when you want them to be
- Information about what you enjoy doing (or don’t enjoy doing), so you can continue to enjoy your favourite hobbies and more
- Any other thoughts you have on your care and preferences around this
- Where you would like to spend your final days and weeks if you progress to requiring end-of-life care
- Any alternative therapies you would like to help you manage pain or other symptoms
- Any particular routines you would like to follow each day
- Any religious beliefs or traditions you would like to be respected during your care
- Anything else that would help you feel comfortable and at peace
How do I speak to my loved one about making an Advance Statement for Care?
An Advance Statement for Care can be a scary document to make, as it can sometimes feel akin to writing a will. However, having this in place is not always connected to end-of-life care, and is actually a positive thing for your health and care as it ensures you receive the exact type of care you need and want, along with your other more personal desires. If you would like to discuss creating an Advance Statement for Care with a loved one, remember it is always helpful to put this document in place as soon as possible in case your condition progresses quickly. You can take your time to think about what you would like to include, and chat about it with your loved ones so they can suggest what they think you should include but ultimately, the document is a reflection of your wishes. Anyone mentioned in your Advance Statement for Care should know about their involvement, for example, if they have been appointed the person in charge of making decisions for you if you become unable to do so. Provided you are still mentally capable of making decisions, remember that anything you write on your Advance Statement for Care can be changed or updated as long as the relevant people know you have done this.
How do I make an Advance Statement for Care and share it?
If you have decided to create an Advance Statement for Care, you will be pleased to know that this is relatively simple to do, and you do not require a solicitor to do this for you – you can write it out in your own words if you are able. Or, you can have a trusted family member or a medical professional help you to do this.
It may also be helpful to know that, if you would rather, you can convey your wishes verbally instead of writing them down. Do keep in mind that this only applies to the Advance Statement for Care and not the Advance Decision To Refuse Treatment, and most medical professionals would recommend writing your Advance Statement for Care down if possible so it is clear to all involved.
When creating an Advance Statement for Care, it can be beneficial to include:
- Basic details such as your full name, address, and date of birth
- Your GP surgery information
- Your NHS number (if you have this)
- Any distinguishing features on your body for emergency identification purposes (scars, tattoos, etc.)
- The circumstances in which you would like your Advance Statement for Care to be consulted (i.e. if you can no longer effectively communicate, or you experience cognitive issues)
- Any treatments you would like to refuse, such as life-sustaining treatment (this is helpful to include, but is more relevant in an Advance Decision To Refuse Treatment)
- Some words to state that the document was written with no pressure from other people
- The date you wrote out your Advance Statement for Care
- Your signature, or the signature of someone who is signing on your behalf (this should be stated on the document)
- The signature of a witness (see below)
Does an Advance Statement for Care need to be signed and witnessed?
You do not have to sign an advance statement, but your signature makes it clear that it is your wishes that have been written down.
Remember, sharing your Advance Statement for Care with others is crucial, as without doing so, medical professionals and other people involved in your care may not know of its existence, and could miss opportunities to respect the wishes in your document.
When you create your statement, remember to share this with anyone mentioned in your statement, other family members (so they can understand your choices and not feel any confusion down the line), and your GP, hospital doctor or any other healthcare professionals involved in your care (so they can contribute information on how your condition is likely to progress, the recommended treatments, and more). You could also update your NHS records, wear a health alert bracelet, carry a crisis card or update any health apps you have on your phone.
You may find it useful to download a free Advance Decision template form on the Alzheimers.org website to use as a starting point for creating your own document. Or, if you have any more questions about creating this, your GP can usually help to point you in the right direction to ensure you have a document that can be considered legally binding, and that encompasses everything you need to respect your care wishes.
Home Instead is an award-winning home care provider and part of a worldwide organisation devoted to providing the highest-quality relationship-led care for older people in their own homes. Arranging care for yourself or your loved one at any stage of life shouldn’t be stressful, so whatever questions you would like answered, feel free to reach out to the Home Instead team to discuss your needs.