Creating an Advance Care Plan

An Advance Care Plan means different things to different people and so it should, we are, after all, all different and our needs and requirements at the end of our lives are as unique to us as individuals as our own fingerprint.

An Advance Care Plan is about your wishes, preferences and priorities, no matter how odd or insignificant they may seem to others, it is your life, no-one else’s. It will not only offer you peace of mind but helps your family, friends and professional carers who will feel comfortable and reassured that they not only know what your wishes are but they are carrying them out.

An Advance Care Plan is a written record of your wishes and preferences surrounding the care you will receive towards the end of your life. It is only used if you are unable to either make a decision for yourself or communicate it. This is called ‘lacking mental capacity’, that means you have been overtaken either by infirmity or increasing illness and are no longer easily able to assess situations and make or communicate decisions.

Most Advance Care Plans are divided up into sections and follow the same style. It is easier to record the information following a standard format as it is simpler for your family and care workers to locate certain things if they need to. You can choose who sees your Advance Care Plan, there is no restriction but you should make sure your closest loved ones have read it or at least, know of its existence and where it is located.

Advance Directive

Also known as an Advanced Statement of Wishes and Preferences, this is about telling people what you would like to happen when you are too ill to express this clearly for yourself. The following points are designed to get you thinking about the key things that may become important as your health deteriorates.

Where you receive treatment – you can express where you would like to receive treatment – home, hospital or hospice. This preference is not legally binding, so your family and healthcare workers may decide not to follow it. For example, you might have stated that you wish to remain at home rather than in hospital but it may not be possible to deliver the level of medical care that you need at home. Sometimes it can be helpful to reflect this in your care choices so that you think about what you might like to happen if your first choice cannot be fulfilled.
Things to surround you – detail things that would make you feel more relaxed and comfortable during your care, these could be items that you would like brought with you from home to hospital or things that you would like to happen whilst you are there.
Visitors – you may not want to receive visitors or there may be certain people you don’t want to visit you.
Pets – what will happen to your pets? The Cinnamon Trust offers practical help to the elderly and terminally ill so that their pet can remain with them for as long as possible. This includes help with daily care, fostering for short periods whilst an owner is in hospital and taking on the rehoming and lifetime care of an animal after an owner has passed away.
Religion – do you have any religious or cultural requirements that you would like to observe whilst you are being cared for?
Knowledge – do you want to know how ill you are and discuss your treatment or would you prefer not to talk about it other than receiving basic information about your care needs?
Organ donation – in May 2020, the law about organ donation in this country is changing to an ‘opt-out’ rather than an ‘opt-in’ system. So, it will be assumed that you will donate organs unless you express a preference to the contrary. You may wish to donate some organs and not others. Write down your preferences so your family and carers know

Changing your mind

We all have the right to change our minds about what we would like to happen, after a few months or even when something is very imminent and close at hand. If you do make changes and alterations to your care plan, you must tell those who were involved when you wrote it.

Most care plan forms are structured so that on the original form, you can express a change in writing and then date and sign it. This means you don’t have to start again and that the alteration won’t get lost as it is part of the original document rather than on a supplementary piece of paper.

Advance Decision to Refuse Treatment (also known as a Living Will)

This section of your care plan will be legally binding so your family and healthcare professionals will have to follow the wishes you express.

Those involved in your care will have to be happy that the decision you made is valid and, that you are no longer able to make decisions about your care evoking this legally binding element of your care plan. You are not able to ask for your life to be ended.

Refusing treatments can be centered around the loss of control such as not wanting bodily functions to be supplemented with mechanical intervention, for instance, supported breathing or eating. It could also involve choosing not to treat ancillary conditions which prolong life such as antibiotics for hospital-acquired infections or pneumonia.

You should discuss your intentions with family and your health carers before you commit this decision to paper.

In order to abide by the terms of an Advance Decision to Refuse Treatment (ADRT), your care workers must be satisfied that the statements you have made are valid. So, you must be over 18 and have mental capacity at the time you wrote down your decision and there must be no outside influence or coercion. Your statements must also apply to the immediate situation. The circumstances at hand which could prolong your life may be different from those outlined in your statement. Healthcare workers cannot and will not assume a blanket denial of all treatments. They will only follow what is specifically detailed in your care plan.

You must be clear about the circumstances in which you want treatment to be denied. A statement that is vague and open to interpretation will only cause confusion and distress to those looking after you and your closest family, which is why it can be helpful to discuss this first with your doctor or healthcare professional. They can anticipate what might lie ahead for you and discuss medical issues so that you understand and can make informed decisions. The form will ask you to state or list who you have discussed your decision with, in a professional capacity.

Your ADRT needs to be signed and dated in the presence of a witness who will also need to sign and date the form to confirm both their presence and identity. You do not need a Solicitor to be involved or attest the process and signature for your statement to be legally binding.

Your ADRT will only be used if you lack the mental capacity to express your opinion or make a decision. It can also only be used if it is specific and relevant to the situation at hand. It may not be used if there have been changes in medical treatment which could cast an influence or doubt over the decision that you made previously.

You can alter or amend your decision at any time in the same way that you can change other elements of your care plan. If you do make amendments then you will need to sign and date them in the presence of a witness who will also sign and date them. The witness does not have to be the same person that witnessed your first declaration. You can also nominate a person to speak on your behalf who knows your wishes and preferences, they don’t have to be appointed with a Lasting Power of Attorney.

An ADRT which could prolong life does not mean you will be denied pain relief and palliative care and medication. Being without pain and as comfortable as possible will be the priority of your care team.

Click here to download the form.

Some key points to remember before you write an Advance Care Plan

An Advance Care Plan is not written in stone, it can be changed, developed and will evolve depending on your needs, wishes and the state of your health. So don’t feel you have to have the whole thing ready and completed down to the very last detail. Take your time and start with the bigger picture filling in the detail as you feel you want to and you can.
Your wishes may change, they probably will – it’s not about writing one definitive care plan and then tearing it up and writing another. The care plan is to reflect the kaleidoscope of your feelings and emotions and you can amend it as things change.
Review your plan regularly, you may forget about what it contains and find when you do read it, that your preferences have changed.
If you make formal changes to your care plan particularly any amendments to a decision to refuse treatment, then you must ensure that all those people who had copies of the original care plan are made aware of the changes and receive copies of the amended document

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