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Planning ahead for end of life
Planning ahead can help make sure your wishes are known, recorded and respected if there comes a time when you are unable to speak for yourself.
It can feel difficult to think about future care and treatment, especially when someone is seriously ill or approaching the end of life. However, making plans in advance can give you more control, help those close to you understand what matters most, and support health and care professionals to make decisions that reflect your wishes.
There are several ways to record your wishes. Some are legally binding, while others are used to guide decisions and help professionals, family members and carers understand what is important to you.
Advance Decisions
An Advance Decision, sometimes called a Living Will, allows you to refuse specific medical treatments in advance.
It only applies if, in the future, you are unable to make or communicate the decision yourself. In England and Wales, an Advance Decision can be legally binding if it has been made correctly.
An Advance Decision can be used to refuse treatments such as:
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resuscitation
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ventilation or breathing machines
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antibiotics
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artificial feeding or fluids
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other specific medical treatments
It is usually sensible to discuss an Advance Decision with your GP or another healthcare professional. You may also wish to seek legal advice, particularly if you are refusing life-sustaining treatment.
Once completed, it is important to tell the right people that you have made one. This may include:
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your family or close friends
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your GP surgery
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anyone involved in your care
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your palliative care team, consultant or paid carers, if relevant
You should also make sure people know where to find the signed document, especially if you are admitted to hospital.
Online and hard copy Advance Decision templates are available here.
Advance Statements
An Advance Statement is a written record of your wishes, preferences, beliefs and values.
It is broader than an Advance Decision. It can include anything that would help people understand what matters to you if you could no longer speak for yourself.
This might include:
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where you would prefer to be cared for
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your daily routine
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food preferences
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religious or spiritual beliefs
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who you would like to be contacted
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what helps you feel comfortable or reassured
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things you would prefer to avoid
An Advance Statement is not legally binding, but health and care professionals should take it into account when making decisions in your best interests.
It is helpful to share your statement with the people closest to you and with anyone involved in your care.
Advance Care Plans
An Advance Care Plan is a more detailed plan for your future care and treatment. It is usually made with a GP, nurse or another healthcare professional.
An Advance Care Plan may include:
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where you would like to be cared for
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where you would prefer to die, if this is possible
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who you would like to be with you
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your religious, spiritual or cultural needs
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your next of kin and emergency contacts
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current health conditions
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medication and allergies
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what should happen in an emergency
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whether you have made an Advance Decision, Advance Statement or Lasting Power of Attorney
Advance Care Plans can be updated as your circumstances or wishes change. They are not legally binding in the same way as an Advance Decision, but they are an important way of helping doctors, nurses and carers understand what matters to you.
A copy is usually kept with your GP records, but it is sensible to keep your own copy as well.
Treatment Escalation Plans
A Treatment Escalation Plan is part of your healthcare record. It helps healthcare professionals understand which treatments may or may not be helpful if you become more unwell, especially in hospital.
It may cover decisions about treatments such as:
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admission to hospital
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intravenous antibiotics
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oxygen or ventilation
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intensive care
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resuscitation
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comfort-focused care
A Treatment Escalation Plan is written by your healthcare team. It should take account of your wishes, your medical condition, and any plans or decisions you have already made.
If you are unable to express your wishes at the time, healthcare professionals should consider any previous conversations, written documents, and the views of people close to you, where appropriate.
DNAR and ReSPECT forms
DNAR means "Do Not Attempt Resuscitation". It is a medical decision about whether cardiopulmonary resuscitation, or CPR, should be attempted if someone stops breathing or their heart stops.
A DNAR decision should usually be discussed with the person, or with those close to them if the person cannot take part in the discussion.
If there is no DNAR decision in place, healthcare professionals will make a decision based on the person's best interests and the clinical situation. There is no equivalent form that says resuscitation must always be attempted.
In many areas, DNAR decisions are now included within a wider ReSPECT form.
ReSPECT stands for Recommended Summary Plan for Emergency Care and Treatment. It is completed with a GP, hospital doctor or other healthcare professional. It records recommendations for emergency care and treatment, including whether the priority should be comfort and quality of life, or whether all possible treatments should be used to try to prolong life.
A ReSPECT form can include information about resuscitation, but it is broader than a DNAR form. It is designed to help emergency and urgent care teams make decisions in line with your wishes.
If you have a ReSPECT form, it is important that it is easy to find. You may also want to take a copy with you if you are admitted to hospital.
Organ and tissue donation
In England, most adults are considered to have agreed to organ and tissue donation after death unless they have recorded a decision not to donate, are in an excluded group, or have made it clear that they do not wish to donate.
You can still make your own decision. You can register a decision to donate, or a decision not to donate, on the NHS Organ Donation Register.
Organ donation may include organs such as the heart, lungs, kidneys or liver. Tissue donation may include things such as corneas, skin, bone or heart valves.
Whether donation is possible will depend on the circumstances at the time of death. Some donations need to happen very soon after death, and certain illnesses or infections may affect what can be donated.
It is important to tell your family or those close to you what you have decided. Families are usually involved in discussions at the time, so it is helpful if they already know what you wanted.
Donation of your whole body for medical science or training is different from organ and tissue donation. This must be arranged with a medical school, and usually requires written and witnessed consent before death. Consent cannot be given by someone else after your death.
Useful Resources
You may find it helpful to speak to your GP, palliative care team, hospice team or another healthcare professional about planning your future care.
Useful sources of information include:
Important note
This information applies to England and Wales. Different arrangements may apply in Scotland and Northern Ireland.
Some documents can be prepared yourself, but for legal documents or complex decisions, you may wish to seek professional advice.