2.2 Outline who may be involved in the advance care planning process

This guide will help you answer 2.2 Outline who may be involved in the advance care planning process.

Advance care planning is a way for a person to make decisions about their future care in case they are unable to communicate later. It allows them to record their wishes, preferences and choices. This can cover medical treatment, personal care and where they would like to live. The process is about the person’s control over their future. It is not only for those at the end of life, but for anyone who wishes to make arrangements in advance.

Many people can be involved in advance care planning. Each plays a different role. Some offer professional advice. Others share personal support. All have a part in helping the person make informed decisions. The level of involvement can vary depending on the situation and the person’s needs.

The Person Receiving Care

The central figure in advance care planning is the person themselves. Their choices form the basis of the plan. They decide who to involve, what to include and how to record their wishes. Their values, beliefs, and cultural background may guide decisions.

The person has the right to accept or refuse any advice given during the process. Discussions should be led by them. They decide how much detail to share and who the information can be shared with.

Evidence shows that involving the person from the start improves satisfaction and reduces stress later. Their voice must remain the priority.

Family Members

Family members often provide support during the process. They might be there to help the person think about different options. They may raise points the person has not considered. Family involvement can be emotional as well as practical.

Family members could include:

• Spouses or partners
• Children
• Siblings
• Other close relatives

They can help by sharing knowledge of the person’s wishes, especially if the person cannot communicate later. They might hold lasting powers of attorney for health and welfare. This gives them legal authority to make decisions if the person loses capacity.

Friends and Informal Carers

Friends and trusted companions can play a big role in discussions. Sometimes a person may choose to involve friends over family, especially if the relationship is closer.

Informal carers who spend a lot of time with the person may have insight into their daily routines, likes and dislikes. They can contribute practical information to help shape the care plan.

Including friends can also give the person emotional comfort. They may feel more relaxed speaking about sensitive topics with someone they trust deeply.

Health Care Professionals

Health care professionals can offer medical expertise. They can explain treatment options, potential side effects and likely outcomes. They can talk about what different interventions involve and what to expect from certain conditions.

This group can include:

• General practitioners (GPs)
• Community nurses
• Specialist nurses (such as palliative care nurses)
• Consultants in hospitals
• Therapists (such as occupational or physiotherapists)

They help the person understand how their health might change and what choices they have. They can record wishes in medical notes and flag important information for other staff.

Social Care Professionals

Social care professionals look at the person’s care needs outside of medical settings. They can advise on support with washing, dressing, eating, mobility, and social engagement. They help identify suitable community services, day centres, respite care and home support.

This group can include:

• Social workers
• Care managers
• Support workers in the community
• Residential or nursing home staff

They help to make sure the person’s social and emotional needs are considered alongside medical care. They may also act as coordinators between health, community and voluntary services.

Legal Representatives

Sometimes a person may want legal advice during the planning process. A solicitor or legal adviser can explain the law around advance decisions, living wills, and lasting powers of attorney. They can help to ensure documents are completed properly and have legal standing.

They may also give advice on financial planning and managing property or assets if that links to future care arrangements.

Advocates

An advocate is a professional or trained individual who speaks up for a person who may find it hard to express themselves. The advocate makes sure their wishes are heard and respected.

This can be especially useful for people who do not have family or friends to support them. In some cases, there is a legal right to have an independent advocate involved, for example under the Care Act 2014 or Mental Capacity Act 2005.

Advocates do not push their own views. Their job is to represent what the person wants. They make sure the person has clear information so they can make choices with confidence.

Religious or Spiritual Leaders

Some people may want to involve a faith leader or spiritual adviser. They can offer guidance on religious or spiritual values related to care, treatment, and end-of-life decisions. They can help ensure the person’s beliefs are respected when care is delivered.

Faith leaders can also provide comfort and support to both the person and their family. Religious considerations may influence choices such as medical interventions, diet, and place of care.

Specialist Support Services

Some people may seek advice from charities or specialist organisations. This includes groups that support people with specific conditions like cancer, dementia, or motor neurone disease. These groups can explain the illness, treatment choices and social support options.

Support services can provide written materials, online tools, and helplines. They can prepare the person for what to expect and help them plan in a way that meets their needs.

Multidisciplinary Teams

A multidisciplinary team is made up of professionals from different areas who work together. They may meet to discuss complex care cases. Each member brings a different perspective, such as medical, social care, mental health, and therapy.

If a person’s needs are varied, involving such a team in the advance care planning process can make sure no aspect is overlooked. The plan can then be shared with all involved services.

Mental Health Professionals

Mental health professionals such as psychologists, psychiatrists and counsellors can help the person with emotional and psychological aspects of planning. Some decisions may be difficult or upsetting.

These professionals can help the person process feelings, reduce anxiety and communicate what they want more clearly. If the person has a mental health condition, the professional can also assess decision-making capacity and support choices.

Translators and Interpreters

If the person speaks a different first language or uses British Sign Language, they may need an interpreter. This ensures they understand information and can express themselves fully. Poor communication can lead to misunderstandings in the care plan, so using trained interpreters is important.

Interpreters must be skilled in medical and care terminology. This avoids the risk of key details being lost or wrongly expressed.

Administrative and Records Staff

In some settings, administrative staff help by recording the agreed plan in the right place. This can involve uploading documents to electronic health records or filing paper copies.

While they are not directly involved in decision-making, their role helps keep accurate records for future reference. They may also help with booking meetings or sending updates to the people involved.

The Role of the NHS and Care Services

Within the NHS, there are systems to record advance care plans so they can be accessed by different teams. For example, the Electronic Palliative Care Coordination System (EPaCCS) allows services to share key information.

Care services such as local authority teams or care agencies also need access to the plan if they provide day-to-day support. This shared access means the person’s wishes can be followed in all settings.

Communication Between Those Involved

One important part of the process is good communication between everyone involved. If family and professionals are not informed about the plan, mistakes can occur.

Meetings, phone calls, letters, and secure emails can all help keep people updated. Regular reviews mean the plan remains accurate if the person’s wishes or circumstances change.

Sometimes the person will choose one professional or family member as the main point of contact. This can make communication smoother.

Situations Where Involvement May Vary

In some cases, the person may want only a few people involved. For example, they might keep discussions private between themselves and a GP. Others may prefer wider involvement, including extended family, friends and multiple professionals.

Some people may face barriers such as lack of family, health inequalities, or cultural differences. In these cases, they might rely more on advocates, community leaders, or support workers.

Final Thoughts

Advance care planning is most effective when the right people are involved. Each person in the process brings their own strengths, whether it is personal knowledge, professional skills, or emotional support.

The goal is to capture the wishes of the person receiving care in a way that is clear, recorded, and respected in the future. Choosing who to involve should be a personal decision led by the individual. By working together, those involved can create a plan that supports dignity, comfort, and the person’s own definition of quality of life.