Planning care in advance

You may feel that it’s important to have your say in where you die and what types of treatment and care you receive at the end of life.

However, there may come a point when you are no longer able to express your wishes due to mental incapacity.

If you are concerned about this and would like to write down your desires for treatment and care, there are various documents you can use:

• Recommended Summary Plan for Emergency Care and Treatment (ReSPECT) form (non-legally binding)
• Advance statement (non-legally binding)
• Advance Decision to Refuse Treatment (ADRT) (legally binding)
• Lasting Power of Attorney (LPA) for health and welfare decisions (legally binding).

Each of these documents must be written when you are able to make your own decisions.

Recommended Summary Plan for Emergency Care and Treatment (ReSPECT) form

The ReSPECT form records your preferences and clinical recommendations for future treatment in a crisis. It is developed through conversations between you and your healthcare professionals.

The aim of the process and the plan is to provide a summary of clinical recommendations that have been discussed with you and agreed by you to ensure you will receive the best treatment for your situation. It will then be used to guide your emergency treatment and care.

The process is most relevant for people who have complex health needs, those who are nearing the end of their lives and people who are at risk of sudden deterioration or cardiac arrest.

The ReSPECT form is advisory rather than legally binding. So if you wish to refuse any specific treatments, you should also consider completing an ADRT alongisde the ReSPECT form.

To find out more, see the Resuscitation Council UK’s website.

Advance statement

An advance statement is a written statement setting down your feelings and preferences for your future care if you should lose the ability to make or tell others of your decisions.

The purpose of your advance statement is to provide guidance to anyone who might have to make decisions in your best interests. It could include:

• where you would like to be cared for, for example at home or in a hospice; in a hospital or a care home
• any religious or spiritual beliefs to be reflected in your care
• practical things, such as if you prefer having a shower to a bath or what type of clothes you like to wear.

An advance statement isn’t legally binding but anyone who is making decisions about your care should take it into account as far as they are able. You don’t have to sign your advance statement, but if you do, it will make it clear that these are your wishes.

If you have a Lasting Power of Attorney (LPA) for health and welfare decisions, make sure you share your advance statement with your attorney(s), should they need to make decisions on your behalf.

To find out more, see the Age UK factsheet 72.

Advance Decision to Refuse Treatment (ADRT)

An ADRT is different to an advance statement as it is concerned with your decision to refuse treatment if you are not able to express your wishes. An ADRT is also known as a ‘living will’ and you must be aged 18 years or over and have mental capacity. It is a legally binding document under the Mental Capacity Act 2005.

• You can only make advance decisions to refuse treatment; no one has the legal right to demand specific treatment.
• You can’t ask for and receive procedures that are against the law; for example, to help with euthanasia.
• There are no particular formalities about the format of an ADRT – it can be verbal or written, but it must be written if dealing with life-sustaining treatment, such as refusing ventilation, cardiopulmonary resuscitation (CPR) if your heart stops and the use of antibiotics.
• You must state precisely what treatment is to be refused and you may also set out the circumstances when the refusal should apply, giving as much detail as possible. For example, you may write, ‘I wish to refuse antibiotics in the event that I have a chest infection, but not if I have a urine infection.’
• If your advance decision lacks detail, it may prove to be inapplicable.

Making your ADRT

If you are considering making an ADRT, get advice from a healthcare professional, such as your GP, or an organisation that can provide advice on specific conditions or situations (if you are being looked after by a Katharine House Hospice palliative care team, we can provide that advice). A doctor can help you understand the consequences as well as the advantages and disadvantages of what you are proposing. If you involve your medical team, your wishes will be recorded in your medical notes.

You may also want to get legal advice to ensure your decision is expressed clearly and accurately.

To be legally valid, your ADRT to refuse life-sustaining treatment must be in writing, signed and witnessed.

Remember, too, to share your document with relevant people, such as family members and your healthcare professions, and keep a record of the people you have given a copy to.

To find out more, Alzheimer’s Society  and Macmillan Cancer Support  have developed ADRT templates and there is more information about writing an ADRT at Macmillan Cancer Support.

How the ReSPECT form and ADRT work together

The ReSPECT process provides a broad framework for emergency care planning. An ADRT focuses on legally refusing treatment in specific circumstances.

The ReSPECT form can include a reference to an ADRT. This ensures that healthcare profressionals are aware of legally binding treatment refusals.

Lasting Power of Attorney for health and welfare decisions

See our separate article on making a Lasting Power of Attorney, but here are a few specific points regarding a Lasting Power of Attorney (LPA) for health and welfare decisions if you are also creating an advance decision.

• If you create an ADRT after an LPA for health and welfare, your attorney cannot consent to any treatment refused in the ADRT, as long as that advance decision is valid and applicable.
• If you create an ADRT before an LPA for health and welfare, the LPA will take priority if both documents deal with the same decision.

Related pages

• Talking about dying: death is one of the most difficult subjects to discuss with family and friends; here we give some ideas on how to start the conversation.
• Planning your funeral: for some people this can be a comforting thing to do and we give advice on paying for your funeral as well as the most important considerations when thinking about your own funeral.
• Making a will: ensure that you have your estate protected for those people you leave behind and know that your wishes will be upheld.