2.3 Describe information an individual may need to enable them to make informed decisions

This guide will help you answer 2.3 Describe information an individual may need to enable them to make informed decisions.

Advance care planning allows a person to make clear choices about their future care and treatment. For these choices to be meaningful, the person must have the right information. This information should be clear, accurate and given in a way they can understand. Without this, they cannot make truly informed decisions.

The level of detail needed varies from person to person. Some may want in-depth medical facts, while others may only want an outline. The way information is presented will depend on the person’s communication needs, language, and personal preferences.

Information on Current Health and Prognosis

An individual needs to understand their current health status. This means having an honest discussion with their GP, nurse, or specialist about their condition.

This should cover:

• Details of any diagnoses
• How the illness or condition might change over time
• The likely progression of the illness
• Possible complications or outcomes

Without knowing how their health might change, a person cannot decide what care or treatment they would or would not want in the future. For example, someone with a progressive condition like motor neurone disease may wish to discuss how mobility, speech, and breathing will be affected.

Information on Treatment and Care Options

A person should be given a clear explanation of the treatments available to them. This goes beyond naming the treatment and includes what it involves, how it works, and what the likely outcomes are.

They should be told about:

• Benefits of the treatment
• Risks or possible side effects
• How treatment is given (such as by mouth, injection, or surgery)
• How often it is given and for how long
• The impact on daily life and independence

The person also needs to know what alternatives there are, including the option of not having treatment. This is called “informed consent”. Without knowing all options, they cannot make a choice that reflects their values and life goals.

Information About Palliative and End-of-Life Care

Many people do not know what palliative care involves. They may think it only applies in the final days of life, but palliative care can be used earlier to manage pain, symptoms, and emotional needs.

A clear explanation should cover:

• The purpose of palliative care
• Who delivers this care and where it can take place (home, hospice, hospital)
• Types of support available for physical, emotional, and spiritual needs
• How symptom control and comfort are prioritised

End-of-life care information should explain what support is given in the final stages of life. For example, it might include who can be present, how pain will be managed, and whether the person can remain at home.

Information on Resuscitation Decisions

A decision on cardiopulmonary resuscitation (CPR) can be part of advance planning. CPR may not always be successful, especially for those with serious health conditions. The person needs clear, sensitive information about what CPR involves and its likely success rates.

They should be told:

• What happens during CPR
• The physical impact afterward if it is successful
• Possible injuries or reduced quality of life after CPR
• Situations where CPR may not work

This allows the person to choose whether they would want CPR attempted. Their decision should be recorded on an official form such as a DNACPR (Do Not Attempt Cardiopulmonary Resuscitation) form.

Information on Advance Decisions and Legal Rights

Some people may want to make an Advance Decision to Refuse Treatment (ADRT) or a Living Will. These are legal documents stating what treatment they would not want in specific situations.

The person needs information about:

• How to create these documents
• What wording is required for them to be valid
• When the decision would apply
• How to review or update them

They should also be told about their rights under the Mental Capacity Act 2005. This includes the right to plan in advance for a time when they may not have capacity to make choices.

Information on Lasting Power of Attorney

If an individual wants someone else to make decisions for them in the future, they can create a Lasting Power of Attorney (LPA) for Health and Welfare.

They should be given information about:

• What an LPA is
• How to choose an attorney they trust
• What powers the attorney would have
• How to register the LPA with the Office of the Public Guardian
• The costs and process involved

This helps ensure the person’s chosen representative will have legal authority to speak on their behalf if needed.

Information on Care Settings

A person’s advance care plan might include preferences about where they receive care. To choose wisely, they must know the options and what each involves.

Information should include:

• Receiving care at home and what support is available
• Moving to a care home or nursing home, including the type of care provided
• Staying in hospital and the services offered
• Hospice care and its benefits

They should be told about costs, funding, and eligibility for NHS or local authority support for each setting.

Information on Symptom Management

An individual may wish to know how pain, breathlessness, anxiety, or other symptoms would be managed in future. This helps them feel reassured that comfort will be prioritised.

They might ask about:

• Pain relief medication
• Oxygen therapy
• Relaxation techniques or complementary therapies
• Access to specialist palliative care teams

This information can influence decisions on where they wish to receive care and what interventions they want.

Emotional and Psychological Support Information

Thinking about future care can cause worry or sadness. The person should be told about the help available to manage these feelings. This can support well-being during the planning process.

They could be told about:

• Counselling services
• Support groups for specific illnesses
• Helplines and charitable organisations
• Bereavement and family support services

Knowing support is available may make it easier for the individual to discuss and record their wishes.

Information on Cultural or Religious Considerations

Some people’s care choices are influenced by beliefs or cultural traditions. It is important they know their traditions will be respected and can be part of the plan.

They may need information on:

• How religious or cultural needs can be met in different care settings
• The role of chaplains or faith representatives
• How dietary rules or special rituals can be supported
• End-of-life practices in relation to their faith

This can help them feel their identity and values will be honoured in the care they receive.

Communication and Advocacy Information

A person may wish to have help in communicating their wishes. They should be told about advocacy services that can speak on their behalf if they are unable to do so.

Information might include:

• Types of advocacy (independent advocacy, NHS complaints advocacy)
• How to access an advocate
• How an advocate can ensure their voice is heard
• Legal rights to advocacy under some laws

This information is especially important for those without close family or friends.

Information on Reviewing and Updating the Plan

An advance care plan is not fixed forever. The person should be told how they can review and change it if they wish.

They should know:

• How often reviews are recommended
• Who to contact to make changes
• How updated information will be shared with services
• How to withdraw or cancel a formal document like an Advance Decision

This allows them to keep the plan in line with their wishes as circumstances change.

Information on Confidentiality and Sharing of Information

The person should know who will see their advance care plan and how it is stored. They may wish to control who it is shared with.

They should be told:

• How records are stored physically or electronically
• Who has access to the document
• How it can be shared between health and social care services
• Their right to request restrictions on sharing

This can help them feel safe in recording sensitive details about their life and preferences.

Financial and Practical Support Information

Advance care decisions can have a financial impact, especially if the person moves into a care home or needs specialist equipment. Having the right financial information helps the individual plan accordingly.

They might need to know:

• Costs of different care options
• How to apply for NHS Continuing Healthcare
• Support from social services for daily care
• Help available through benefits such as Attendance Allowance or Personal Independence Payment
• Charitable grants or support schemes

This allows them to balance their care wishes with the financial realities they may face.

Final Thoughts

For advance care planning to be meaningful, the person must have clear and full information. This covers their health, treatments, care options, legal rights, emotional support, and practical implications. Without this, their decisions may not reflect what they truly want.

As a health or social care worker, your role is to help the person access the information in a way they can understand. This may mean working with other professionals, using simple language, or providing written resources. Giving people the right information at the right time supports dignity, choice, and control over their future.