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:
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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:
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.
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.
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:
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.
A number of things can be included in an Advance Statement for Care, such as:
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.
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:
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.