1.6 Explain what is meant by informed consent in relation to advance care planning

This guide will help you answer 1.6 Explain what is meant by informed consent in relation to advance care planning.

Informed consent means a person has agreed to something after receiving clear and complete information about it. In the context of advance care planning, it means the person has been given the facts about their options for future care, understands those facts, and agrees without pressure.

Advance care planning is the process where someone makes decisions about the care and treatment they may want in the future. This is especially important if there might come a time when they cannot speak or make decisions for themselves. The decisions are usually written down in documents such as Advance Decisions to Refuse Treatment or Advance Statements.

For consent to be informed, three things must happen:

• The person has been given full and accurate information.
• They understand the information and can think about their options.
• They make the choice freely without pressure or influence from others.

Key Principles of Informed Consent

Informed consent is based on the rights of the individual. It recognises that every adult with mental capacity has the right to make decisions about their own health and care.

Key principles include:

• Giving all relevant information about choices, risks, and benefits.
• Using language the person can understand, avoiding medical jargon unless explained.
• Giving time for the person to ask questions and think about options.
• Checking the person has understood before they make a decision.

Consent must be voluntary. It must come from the person themselves, not from others unless they have legal authority such as lasting power of attorney for health and welfare.

Legal and Ethical Context

In the UK, informed consent is linked to laws such as the Mental Capacity Act 2005. This Act sets out how to support people to make their own decisions and what to do if they cannot. It states that:

• A person must be assumed to have capacity unless proven otherwise.
• Support must be given to help the person make a decision.
• A person has the right to make a decision others may view as unwise.

Ethically, informed consent is about respect for autonomy. Autonomy means the right of people to control what happens to their own body.

If consent is given without proper understanding, or under pressure, it is not valid.

Steps to Support Informed Consent in Advance Care Planning

When supporting informed consent for advance care planning, workers should:

• Explain what advance care planning is and its purpose.
• Describe all the available options for future care and treatment.
• Explain potential outcomes, both benefits and risks.
• Give examples of situations where the plan might be used.
• Offer written and verbal information.
• Use plain language or translation services if needed.
• Check understanding by asking the person to explain in their own words.
• Allow time for reflection without rushing.

Assessing Capacity to Give Consent

To give informed consent, a person must have mental capacity for that decision. This means they can:

• Understand the information given.
• Retain the information long enough to make a decision.
• Weigh up the information when making the choice.
• Communicate their decision in some way.

Capacity can change over time and may depend on the complexity of the decision. For example, someone may have capacity to decide where to live, but not about a complex medical treatment.

If there are doubts about capacity, a formal capacity assessment should be carried out following the Mental Capacity Act guidelines.

Role of Advance Statements and Decisions

An Advance Statement is where a person writes down their wishes, preferences, values, and beliefs about future care. It is not legally binding but should be followed by care providers if possible.

An Advance Decision to Refuse Treatment (ADRT) is legally binding in England and Wales if it meets formal requirements. It records a decision to refuse certain treatment in the future, including life-sustaining treatment. For an ADRT to be valid:

• The person must have capacity at the time of making it.
• The person must have full information about the treatment they are refusing.
• The decision must be made voluntarily and recorded correctly.

Informed consent is central to both these documents, as they set out choices based on the person’s knowledge and understanding.

Using Clear Communication

Clear communication is essential for informed consent in advance care planning. This means:

• Using everyday words instead of medical terms, unless those terms are explained.
• Offering information in different formats such as leaflets, diagrams, or videos.
• Involving interpreters for people who have a different first language.
• Considering hearing, vision, and speech difficulties.
• Giving enough time for the person to absorb information and decide.

Poor communication can lead to misunderstandings and invalid consent.

Avoiding Pressure and Influence

Consent is only valid if it is given freely. This means:

• No one should put pressure on the person to make a particular choice.
• Families and professionals can give advice but must not coerce or influence unfairly.
• The person’s own values and wishes should take priority.

If there are signs of pressure, it may be necessary to pause the process and address the concerns.

Recording Informed Consent in Advance Care Planning

Records should be clear, accurate, and up to date. They should show:

• What information was provided.
• How understanding was checked.
• The person’s decision and reasoning.
• Any questions they asked and answers given.
• Who was involved in the discussions.
• Dates and signatures of those involved.

Records protect everyone and help to make sure the person’s wishes are followed.

Supporting People Who Lack Capacity

If the person lacks capacity to make an advance care plan, the Mental Capacity Act must be followed. Decisions must be made in their best interests. This involves:

• Considering their past wishes, feelings, and beliefs.
• Involving family members or friends.
• Balancing risks and benefits.
• Choosing the least restrictive option.

A valid and applicable ADRT cannot be made by anyone else on behalf of the person. Only the person themselves can make one while they have capacity.

Cultural and Personal Factors

People’s views about future care are shaped by their culture, religion, and personal beliefs. When seeking informed consent, workers should:

• Respect different values and traditions.
• Be sensitive to language and communication styles.
• Avoid making assumptions.
• Offer information in a way that fits with the person’s cultural background.

This helps build trust and understanding, making informed consent easier to achieve.

Challenges in Achieving Informed Consent

Some common challenges include:

• Medical terms that are hard to understand.
• Fear or anxiety about illness and death.
• Limited time for discussion.
• Family disagreements.
• Changes in the person’s health or capacity.

Overcoming these challenges requires patience, clear communication, and person-centred practice.

Benefits of Informed Consent in Advance Care Planning

When informed consent is done well, benefits include:

• The person has control over their future care.
• Care is more likely to match the person’s wishes.
• Families understand the person’s decisions and are less likely to face conflict.
• Professionals have clear guidance on the person’s choices.

It supports dignity, respect, and good communication between everyone involved.

Best Practice for Workers

Workers can support good practice by:

• Giving full and accurate information.
• Using plain language and accessible formats.
• Checking understanding before recording consent.
• Respecting the person’s values and choices.
• Keeping accurate records.
• Reviewing plans regularly and updating if needed.

Good practice protects the rights of the person and improves the quality of care.

Final Thoughts

Informed consent in advance care planning is about giving people control over their future health and care. It means they can make choices that reflect their values, beliefs, and personal needs. It depends on clear information, respect for autonomy, and freedom from pressure.

Workers have a responsibility to make sure consent is valid. This means supporting understanding, checking capacity, and recording carefully. Done well, it leads to care that truly reflects the wishes of the person, even if they later cannot speak for themselves. It is an important part of dignity and respect in care.