Living with advance care planning overview

Overview

Advance care planning is about thinking ahead and writing down your wishes for your future medical care, so that if you become too unwell to speak for yourself, the people looking after you and your loved ones know what matters to you.

Many people put off advance care planning, but it is recommended for everyone, especially those with long-term conditions or older age. It is not just for people at the end of life.

It can affect anyone. You do not have to be ill to make a plan. It is useful for people of all ages, but it often matters most for people with a serious health condition or those who are getting older.

Symptoms

Common symptoms

• Not knowing what decisions might come up in the future
• Worrying about being a burden on family
• Feeling unsure how to start the conversation with your doctor or loved ones

Symptoms in children

• Advance care planning for children is rare, but may be considered for a child with a serious, life-limiting condition. The focus is on comfort and dignity.

Symptoms in older adults

• Older adults often think about who they would trust to make health decisions if they could not, and what kind of care they want.

Causes

Main causes

• A person may start planning after a new diagnosis, a serious illness, or a hospital stay.
• Some plan because they are getting older and want to make sure their wishes are known.
• Others plan after seeing a family member or friend go through a difficult illness.

Risk factors

• Having a long-term condition, such as heart disease or diabetes, may make planning more urgent.
• Living alone or having complex medical needs can also make it more important to have a written plan.

When to see a doctor

See a doctor urgently if:

• You should seek urgent medical care if you have new, severe symptoms or a medical emergency.

Book a routine appointment if:

• It is a good idea to discuss advance care planning during a routine appointment if you have questions about future care.

Diagnosis

Advance care planning is not a medical test. It is a conversation you can start with your healthcare team at any time.

Tests that may be done

• There are no blood tests or scans. Your healthcare provider may use a structured conversation or a written tool to help you record your wishes.

What to expect at your appointment

Your provider may ask about your values, what matters to you, and who you would want to make decisions for you. You can take your time and change your mind at any time.

Treatment

Once you have written down your wishes, they become part of your medical record. Your care team will use them to guide your care if you cannot make decisions yourself.

Self-care at home

• Talk to your family and friends about your wishes.
• Carry a copy of your plan and keep it somewhere safe.
• Review your plan regularly and update it if your health or preferences change.

Medical treatments

Your healthcare provider can help you describe what treatments you would or would not want, such as being on a breathing machine or receiving CPR. They will explain the options in plain language, not prescribe specific drugs.

When is surgery considered?

Not applicable. Advance care planning is a conversation, not a surgical procedure.

Living with this condition

Living with advance care planning means your wishes are known and respected. It can reduce worry for you and your family, because everyone understands what you want.

Lifestyle tips

• Keep your plan in a place where your family can find it.
• Carry a small card or note in your wallet saying you have a plan.
• Talk openly about your wishes with those close to you.

Diet and exercise

Eating well and staying active are important for your overall health at any age. They do not affect your advance care plan, but staying well makes it more likely you will be able to speak for yourself.

Mental health and emotional wellbeing

For some people, thinking about future illness can feel upsetting. It is normal. Talking to a counselor or trusted friend can help. If you are struggling, please reach out to your healthcare team for support.

Prevention

Advance care planning itself cannot be prevented, and it is not something to prevent. It is a positive and safe way to prepare for the future.

Vaccines

Not applicable.

Screening programmes

No screening tests are needed for advance care planning. It is a conversation, not a medical test.

Complications

If left untreated

• If you do not write down your wishes, family members may disagree about what you would have wanted.
• Your healthcare team may make assumptions about your care, which may not reflect your true preferences.

Long-term outlook

Having an advance care plan gives you control. It is a hopeful, life-affirming step that can bring peace of mind to you and your loved ones.

Find support

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