2.6 Explain how the individual’s capacity to discuss advance care planning may influence their role in the process

This guide will help you answer 2.6 Explain how the individual’s capacity to discuss advance care planning may influence their role in the process.

Capacity is the ability of an individual to make decisions for themselves at the time those decisions need to be made. In health and social care, capacity is decision-specific and can change over time. An individual might have the capacity to make everyday choices but lack capacity for more complex medical or financial decisions.

Advance care planning is a process in which a person sets out their preferences for future care. This can include treatment they would or would not want, choice of care setting, and who they would like to make decisions if they cannot do so. The person’s capacity at the time of planning plays a direct role in how much control they have and what part they can play.

If a person has capacity, they can discuss and record their wishes themselves. If capacity is limited or absent, the process must adapt to safeguard their rights and meet legal requirements.

Legal Framework and Guidance

In the UK, the Mental Capacity Act 2005 provides the legal definition and framework for assessing capacity. It states that a person is assumed to have capacity unless proven otherwise. Care workers and other professionals must not assume a person cannot decide simply because they make a choice that others see as unwise.

Assessment of capacity involves checking if the person can:

• Understand the information relevant to the decision
• Retain that information long enough to make a choice
• Use or weigh the information as part of the decision-making process
• Communicate the decision in any way, such as speech, writing, sign language, or gestures

Where capacity is lacking for a specific decision, the Act requires decisions to be made in the person’s best interests and in the least restrictive way.

Influence of Full Capacity on the Process

An individual with full capacity can:

• Lead discussions about their own care preferences
• Provide informed consent for decisions
• Create legally binding documents such as advance decisions to refuse treatment (ADRT)
• Appoint a lasting power of attorney (LPA) for health and welfare
• Modify their plan at any point if their wishes change

When a person has capacity, the process is more direct. Care planning meetings can be conducted with them as the main voice. They can express clear views and values and have the final say on what goes into the plan.

Full capacity also means the plan is more likely to reflect their true wishes. Health and social care teams can document specific preferences about medical interventions, pain relief, resuscitation status and end-of-life care location.

Influence of Fluctuating Capacity

Some individuals have conditions where capacity changes over time, such as dementia, mental health conditions, brain injuries, or certain illnesses. In these cases, the timing of discussions becomes important.

Fluctuating capacity can influence the process because:

• Planning may need to take place when the person is most alert and able to consider options
• Extra time and patience may be needed during discussions
• Information may need to be repeated in different ways to support understanding
• Some decisions might need to be broken down into smaller, simpler steps

Professionals must document times and circumstances when the person is most able to participate. In these periods, they can take an active role in shaping their plan. When capacity is reduced, views obtained earlier can guide decision-making.

Influence of Limited Capacity

If a person has limited capacity, they might still be able to make some decisions about their care. For example, they might be able to choose who they want present at discussions, express preferences for comfort measures, or say where they would like to be cared for.

The role of the individual will then be to contribute as much as possible to the extent they are able. Care workers must adapt communication methods such as using pictures, simple language, or non-verbal cues to gather their views.

Limited capacity means the process requires more support from family members, advocates, or legal representatives. Under the Mental Capacity Act, if there is no family or friend to represent the person, an independent mental capacity advocate (IMCA) must be involved for serious medical treatment or accommodation changes.

No Capacity from the Outset

If the individual has no capacity at the start of advance care planning, they cannot make their own decisions about treatment or future care. This changes their role completely. Instead of being an active decision-maker, they become the person whose best interests guide every stage of planning.

In such cases:

• The process relies on any written or verbal statements the person made when they had capacity
• If they appointed an LPA before losing capacity, that person takes the lead in decisions
• Health and social care teams consult family members and those who know the person well to understand their values and beliefs
• The decision-making process must still centre on what would be right for the person, not what others might prefer for themselves

Even without capacity, staff must still involve the person as much as possible, for example by explaining decisions in plain language, using sensory cues, or involving them in activities consistent with their wishes.

Communication and Capacity

The way discussions are carried out can affect how much a person with reduced capacity can contribute. Barriers such as hearing loss, speech difficulties, language barriers, or cognitive impairment can make it seem like capacity is lower than it really is.

Skilled communication support may involve:

• Speaking slowly and clearly
• Using visual aids or pictorial prompts
• Checking understanding regularly
• Allowing more time for responses
• Involving speech and language therapists

Removing communication barriers can increase the person’s ability to take part meaningfully in advance care planning.

Emotional Factors and Capacity

Emotional wellbeing affects a person’s ability to discuss advance care planning. Anxiety, fear, grief, or past trauma can reduce their ability to think clearly or focus on complex information. In some cases, distress can temporarily impair capacity.

To address this:

• Professionals should create a calm, supportive environment
• The person should be given choice over the timing and setting of discussions
• Support from trusted people can help them feel secure enough to engage

When emotional barriers are reduced, the person may be able to play a stronger role in the decision-making process.

Timing of Discussions

The stage of illness or condition can influence when a person has the capacity to talk about future care. For example, early in a dementia diagnosis, they might have full capacity and be able to set out detailed wishes. Later on, capacity may decline and the ability to update or clarify those wishes may be lost.

Capacity should be reviewed regularly, and discussions timed to give the person the greatest opportunity to influence their care plan.

Role of Professionals in Supporting Capacity

Health and social care workers have a duty to maximise a person’s capacity wherever possible. This means giving information in an accessible way, giving time for decisions, and adapting the process to suit the person’s abilities.

Key actions include:

• Checking for treatable conditions that may impair capacity, such as infections or medication side effects
• Providing information in chunks to avoid overload
• Using decision aids or written summaries
• Ensuring the person is comfortable and not in pain during discussions

When workers take these steps, the individual is more likely to be able to participate meaningfully in the planning process.

Ethical Considerations

Respecting autonomy is a guiding principle in advance care planning. Where capacity is present, respecting the person’s views builds trust and promotes dignity. Where capacity is absent, respecting their known values is equally important.

There is also a duty to protect individuals from harm. Sometimes, this involves balancing the person’s right to choose with the need to provide safe and appropriate care. This can be more challenging when capacity is borderline or fluctuating.

Capacity Impact

The influence of a person’s capacity on their role in advance care planning can be summarised as:

• Full capacity – The person leads the process, makes decisions, and sets out their wishes directly.
• Fluctuating capacity – The person contributes most when they are well; timing and repetition become important.
• Limited capacity – The person’s input is supported and adapted; representatives may take a larger role.
• No capacity – Decisions are made in their best interests with reference to any past wishes and input from people who know them.

Across all situations, effort should be made to maximise the individual’s involvement and preserve their dignity.

Final Thoughts

Capacity is central to how advance care planning is carried out. It affects not only the legal standing of the plan but also the personal meaning it holds for the individual. A plan made with their direct input is more aligned to their values and preferences.

Health and social care workers should approach capacity as something that can often be supported and improved, rather than a fixed ability. With the right communication methods, timing, and support, many individuals who initially seem unable to participate can still express important preferences. This helps keep the process person-centred and respectful, no matter the starting point.