Advanced Care Planning

What is Advance Care Planning?

Advance care planning is a way of thinking ahead and making choices about the care and support you would want in the future. For people living with mesothelioma, it can help ensure your wishes are understood by your family, carers and healthcare team, especially if there comes a time when you are unable to speak for yourself. It can cover what matters most to you, where you would prefer to be cared for, and any treatments or support you may or may not want. Planning ahead can feel difficult, but it can also bring reassurance, clarity and peace of mind for you and those close to you.

Is an advance care plan a legal document?

An advance care plan is not a legal document and can be changed by you at any time. It is a way of recording your wishes, preferences and priorities for future care, so that your family, carers and healthcare team understand what matters most to you. It is helpful to review your plan with a relevant healthcare professional whenever your circumstances change, such as when active treatment ends, your health changes, or time may be short. This is different from an Advance Decision to Refuse Treatment, sometimes called an ADRT or living will, which can be legally binding if it is valid and applies to the situation. An ADRT allows you to record specific treatments you would want to refuse in the future, such as cardiopulmonary resuscitation, artificial feeding or other life-sustaining treatment.

An advance decision is legally binding as long as it:

• Complies with the Mental Capacity Act
• Is valid
• Applies to the situation
• If your advance decision is binding, it takes precedence over decisions made in your best interest by other people.

An advance decision may only be considered valid if:

• You’re aged 18 years old or over and had the capacity to make, understand and communicate your decision when you made it
• You specify clearly which treatments you wish to refuse
• You explain the circumstances in which you wish to refuse them
• It’s signed by you (and by a witness if you want to refuse life-sustaining treatment)
• You have made the advance decision of your own accord, without any harassment by anyone else
• You have not said or done anything that would contradict the advance decision since you made it (for example, saying that you’ve changed your mind)

Further information on this can be found at:

Advance decision (living will) – NHS

Advance Care Planning for Individuals, Families & Carers

When should I write my advance care plan?

This is a very personal decision, but it is usually best to start making plans for the future when you are well, thinking about end of life when you have a life limiting diagnosis can be scary and cause some anxiety and distress. If you are well then making plans can seem less daunting, an advance care plan can be changed at any point and should be reviewed with a relevant health care professional such as a palliative care nurse at key points in the pathway.

But it is never too late to write down what your wishes are for end of life care and some patients prefer to do this when they know their time is short.

What kind of things do I need to include?

Resuscitation (DNR)

A Do Not Attempt Cardiopulmonary Resuscitation form, often called a DNACPR, DNAR or “do not resuscitate” form, can feel upsetting or frightening to think about, but it is there to help make sure a person’s care is right for them. It records a medical decision that CPR should not be attempted if their heart or breathing stops, usually because CPR is unlikely to work or may cause more harm than benefit. It does not mean that care will stop. The person will still receive treatment, comfort, symptom control, kindness and support from the healthcare team. Wherever possible, this decision should be discussed sensitively with the patient and, if they wish, their family or those close to them, so everyone understands what it means and feels supported.

Preferred place of care

Your preferred place of care is where you would most like to be looked after towards the end of your life. For many people, this may be at home, surrounded by familiar people and things, but others may feel more comfortable in a hospice, hospital or care home. Writing down your preference helps your family, carers and healthcare team understand what matters most to you. Although it is not always possible to guarantee your preferred place, support from the palliative care team, district nurses, your GP and carers can often help make care at home possible.

Is there any information I can access to help me write my plan?

Macmillan, Marie Curie and NHS England all have very detailed information on advance care plans and how to make one. Macmillan have a very good booklet called Planning Ahead When Living With Cancer – in England and Wales. You should be able to access this booklet online at the Macmillan website or obtain a copy at your local Cancer Information Centre.