3.4 Explain how to support an individual to exercise their right not to create an advance care plan

This guide will help you answer 3.4 Explain how to support an individual to exercise their right not to create an advance care plan.

An advance care plan is a document that records a person’s preferences about future health and social care. It can cover medical treatment, personal wishes, cultural needs and end-of-life care. While this can be useful, it is not compulsory. Every individual has the right to decide whether they wish to create one or not. Supporting someone’s right not to create an advance care plan means respecting their decision without pressure. It also means protecting that decision and ensuring it is recorded accurately.

An individual may decide they do not want an advance care plan for many different reasons. They might feel their choices may change later. They may believe their family will make the right decisions when the time comes. They may not want to think about illness or death. They might also trust healthcare professionals to act in their best interest without a written plan.

The Legal and Ethical Basis for This Right

The Human Rights Act 1998 supports a person’s right to make choices about their own life. Informed consent is central to health and social care. No one can be forced to document their future care wishes if they do not want to. The Mental Capacity Act 2005 provides a framework for decision-making. It states that people must be assumed to have capacity unless proven otherwise. This means an individual can refuse to make an advance care plan at any time.

From an ethical point of view, respect for autonomy is key. Autonomy means the person’s right to make choices about their own life, health and care without interference. Supporting this right means not judging their decision and not trying to steer them into making a plan.

Recognising the Reasons for Refusal

Understanding why an individual may not want to create an advance care plan helps you support their choice respectfully. Common reasons may include:

• A desire to maintain flexibility and not be tied to a fixed document
• Emotional discomfort discussing illness or death
• A belief that family or friends will know what to do
• Trust in health or care professionals to act in their best interests
• Cultural or religious beliefs that discourage planning for the end of life
• Past negative experiences with care planning or medical services

By listening without interruption and showing respect, you help create a safe environment for the person to speak openly about their feelings.

Communication Skills to Support Their Right

Clear and respectful communication is essential. Avoid persuasive language that might make the person feel pressured to change their decision. Offer factual information about what an advance care plan is and how it might be used, but make it clear that they do not have to create one.

Techniques that can help include:

• Using open questions: “Can you tell me more about what makes you feel that way?”
• Active listening: paying attention and reflecting back their words to show you understand
• Clarifying: “So you’re saying you prefer not to make a plan right now?”
• Using neutral tone and body language

Avoid making assumptions. For example, do not assume that someone who does not want a plan now will never want one in the future. Keep the communication supportive and non-judgmental.

Recording and Respecting Their Decision

It is good practice to record a person’s decision not to create an advance care plan. This ensures that all staff are aware of it. Recording should include the date of the discussion, the person’s stated decision, and any reasons they give if they choose to share them. Do not add your own opinions or suggestions into the record.

The record might be held in the person’s care plan file or in electronic records. Confidentiality must be maintained. Only relevant health and social care workers should have access.

Protecting the Individual from Pressure

Some individuals may feel pressured by family members or professionals to make an advance care plan. Supporting their right not to create one means protecting them from this pressure. You can do this by:

• Offering to have discussions in private, away from relatives or others who might influence them
• Explaining to family members that the person has made their own decision which must be respected
• Placing emphasis on the legal rights of the individual
• Reassuring the person that their wishes will still be respected without a formal advance care plan

This protection is especially important for vulnerable adults who may find it hard to say no.

Updating Staff and Services

Once an individual has made their decision, it is important that all professionals involved in their care are informed. This can prevent repeated conversations or pressure from others. It avoids frustration for the person and helps maintain trust.

This might involve updating:

• Care records
• Multi-disciplinary team notes
• Any service planning documents

By sharing the decision appropriately, you make sure the choice is respected across all parts of the service.

Supporting the Decision Over Time

A person’s right not to create an advance care plan is ongoing. They can keep the same decision for as long as they wish. They might change their mind later. Your role is to continue respecting their choice and not raise the matter unnecessarily, unless they indicate they want to revisit it.

If their health or personal situation changes, you can remind them of the option without pushing them into it. Simply letting them know they can talk about it if they want to is enough.

Cultural Sensitivity

Cultural beliefs can strongly influence whether or not someone chooses to make an advance care plan. Some cultures may see talking about death as inviting bad luck. Others may believe decisions should be made collectively by family, not written individually in advance.

When supporting someone’s right to refuse, be sensitive to these factors. Show respect for their background and avoid comments that suggest their beliefs are unreasonable. Cultural awareness training can help you approach such situations with understanding and respect.

Addressing Concerns and Misunderstandings

Some individuals do not want an advance care plan because they misunderstand what it means. They might fear it will limit their treatment options or allow doctors to give less care. Take time to provide simple and accurate information.

You can explain:

• An advance care plan is voluntary
• It is not legally binding unless it is an advance decision to refuse treatment (ADRT)
• It does not replace decision-making at the time care is needed
• It can be changed or withdrawn at any time

If a person still prefers not to create one after hearing this information, their decision still stands. The role of the worker is to make sure they are informed, not to persuade them.

Maintaining Professional Boundaries

Workers must keep professional boundaries in place. This means not letting personal beliefs or experiences influence the conversation. You may personally value having an advance care plan, but your role is to respect the individual’s views.

Avoid telling stories about other people’s experiences with advance care plans unless it is directly relevant and requested by the person. Keep the focus on their situation and needs.

Supporting People with Reduced Capacity

If a person lacks capacity at the time of discussion, decisions must be made in their best interests under the Mental Capacity Act 2005. This does not mean creating an advance care plan on their behalf. If they previously expressed a wish not to have one, this should be respected wherever possible.

Family members or advocates can help confirm past wishes. Documentation of earlier discussions can guide current actions. Protecting the person’s original choice remains a priority.

Involving Advocates

An independent advocate may be helpful for people who feel unsure how to express their decision or if there is disagreement from family members. An advocate’s role is to speak on behalf of the person and make sure their rights are upheld.

You can support someone’s right not to create an advance care plan by referring them to an advocate if they request it. The advocate can attend meetings, help clarify information and confirm the person’s decision with professionals.

Handling Future Care Without a Plan

If a person decides against an advance care plan, care workers should be prepared to support them using other methods. This might include:

• Having regular conversations to understand their current wishes
• Recording any preferences expressed informally
• Involving trusted relatives or friends at the time decisions need to be made
• Using best interest meetings when the individual lacks capacity in the future

Not having a written plan does not mean the person’s voice is unheard. Care staff can still act in line with what they know about the person’s values and preferences.

Professional Reflection

Reflecting on situations where someone refuses an advance care plan can help improve your practice. Think about how you approached the discussion, whether you avoided pressure, and if you recorded the decision clearly. Consider if you could have communicated more clearly or offered better emotional support.

Team discussions and supervision are useful for sharing experiences. This can lead to better ways of respecting people’s rights in future.

Final Thoughts

Supporting an individual to exercise their right not to create an advance care plan is about respect, law, and ethics. It means listening without judgement, protecting them from pressure, and recording their wishes accurately. It is not about persuading them otherwise, but about making sure they can make their own choice freely.

This right is protected by law and reinforced by professional standards in health and social care. By respecting it, you help build trust and dignity in the relationship between the person and those providing care. The worker’s role is to keep the person at the centre of all decisions, whether or not those decisions are written down in advance.