What is Advanced Care Planning in Health and Social Care?

Advanced Care Planning (ACP) is a process where individuals discuss and record their preferences for future care and treatment. It is especially relevant for people who may become unable to make or express decisions later in life because of illness, injury or a condition that affects capacity. ACP encourages people to take an active role in making choices about their care before a crisis occurs. It provides a clear guide to family members, carers, and health or social care professionals about what matters most to a person.

These arrangements can cover many aspects including medical treatments, care settings, daily preferences, and who will make decisions if the person is unable to do so themselves. In the UK, ACP is guided by principles of the Mental Capacity Act 2005, which supports the right of individuals to make decisions while they have capacity, or to ensure that their wishes are respected if they lose capacity later.

The Purpose of Advanced Care Planning

The main purpose of ACP is to give people control over their future care. It allows individuals to record what they value most and what kind of treatment and support they would or would not want. This planning helps to avoid confusion or conflict among loved ones and professionals when decisions must be made.

ACP can also ensure that a person’s care aligns with their values, religious beliefs, and lifestyle. It is particularly useful for those living with long-term illnesses or conditions where there is a risk of losing decision-making ability. It reduces uncertainty during difficult times, improves communication, and helps everyone involved focus on what is important to the individual.

Parts of Advanced Care Planning

Although each ACP is personal, there are some common elements that can be included:

• Advance Statement – A written record of general wishes, preferences, and values about future care or daily living. This is not legally binding but must be taken into account by healthcare professionals.
• Advance Decision to Refuse Treatment (ADRT) – Also called a living will, this is a legally binding document where a person can refuse specific treatments in the future. It applies if the person loses capacity to make the decision themselves.
• Lasting Power of Attorney (LPA) for Health and Welfare – A legal arrangement where someone is appointed to make health and welfare decisions on the person’s behalf if they cannot do so. This must be registered with the Office of the Public Guardian.
• Do Not Attempt Cardiopulmonary Resuscitation (DNACPR) form – A documented decision about whether or not CPR should be attempted if the heart or breathing stops.
• Preferred Priorities for Care (PPC) – A record of where and how a person would prefer to receive care, including preferred place of death if thinking about end-of-life care.

Each of these elements can be included separately or together as part of a person’s ACP.

Who Should Take Part in Advanced Care Planning

ACP can benefit anyone, but it is especially valuable for:

• People with long-term illnesses such as dementia, heart disease, or chronic lung conditions.
• Older adults who wish to make their preferences clear.
• Individuals with progressive conditions where health might deteriorate over time.
• People at risk of sudden loss of capacity because of a medical condition or injury.
• Those in high-risk professions who want to plan ahead for unexpected events.

Family members, carers, doctors, nurses, social workers, and care coordinators can be involved in these conversations to ensure all perspectives are considered.

The Process of Advanced Care Planning

ACP is not a single conversation. It is an ongoing process that can change if a person’s health, circumstances, or views change. A typical process might include:

1. Starting the Conversation – The first step is to talk about future care needs. This might be initiated by the individual, a family member, or a healthcare professional.
2. Sharing Information – The person needs clear, honest information about their health condition, possible future changes, and what options are available.
3. Recording Preferences – Decisions and wishes are written down in the relevant documents. This might include an advance statement, ADRT, or paperwork for an LPA.
4. Distributing Copies – Copies of the ACP should be shared with GP surgeries, hospitals, care homes, relevant family members, and any appointed attorneys to make sure the plan is available when needed.
5. Reviewing and Updating – Plans should be reviewed regularly, especially if circumstances change. This ensures the ACP still reflects the person’s wishes.

Legal Considerations in Advanced Care Planning

The Mental Capacity Act 2005 provides a framework for making decisions on behalf of individuals who lack capacity and protects their rights. It states that any decision made for a person without capacity must be in their best interests. ACP allows individuals to set out what those interests are from their own perspective.

An ADRT is legally binding if it meets legal requirements. It must be in writing, signed, witnessed, and clearly state which treatments are being refused. If refusing life-sustaining treatment, it must include a specific statement confirming that the decision applies even if life is at risk.

An LPA for Health and Welfare must be registered before it is legally valid. The appointed attorney can only make decisions if the person lacks capacity.

Communication in Advanced Care Planning

Effective ACP depends on clear and open communication. Discussing serious illness, possible decline, and end-of-life care can be difficult, but having honest conversations early often makes decision-making easier later.

Good communication during ACP involves:

• Using plain language without medical jargon.
• Listening actively to concerns and preferences.
• Allowing enough time for the conversation without rushing.
• Including those who the person trusts and wants involved.
• Respecting cultural, religious, and personal values.

Documenting these discussions helps ensure healthcare professionals can follow the person’s wishes even if those present at the conversation are not available later.

Benefits of Advanced Care Planning

ACP brings many benefits to individuals, families, and care professionals. It can:

• Reduce anxiety about the future.
• Prevent disagreements between family members at stressful times.
• Make it easier for healthcare professionals to make treatment decisions.
• Support a person-centred approach, where care reflects what matters most to the individual.
• Improve quality of care by aligning it with the person’s values and lifestyle.

When everyone involved knows what to expect, focus can shift from uncertainty to delivering care in line with the person’s choices.

Challenges and Barriers to Advanced Care Planning

Despite its benefits, ACP can face challenges.

Some people may avoid starting conversations about future care because they find it uncomfortable. Others may feel they are too young or healthy to think about such matters. Cultural attitudes toward discussing death and serious illness can also influence willingness to take part.

Practical barriers such as lack of access to legal advice for preparing formal documents, or uncertainty about where to store or share the plan, can also cause problems. In some cases, healthcare professionals may lack training or confidence to initiate ACP discussions.

Addressing these barriers often involves public awareness campaigns, professional training, and making ACP documents more accessible.

The Role of Health and Social Care Professionals in ACP

Professionals in the health and social care sector are well placed to guide and support ACP. Their role can include:

• Providing information about treatment options and possible outcomes.
• Listening to and understanding the person’s perspective.
• Supporting the documentation and safe storage of ACP records.
• Making sure ACP discussions occur at an appropriate time.
• Ensuring copies of ACP documents are available to relevant services.

By supporting ACP, professionals can help reduce unnecessary hospital admissions, align treatment with preferences, and improve satisfaction with care.

Cultural and Personal Preferences in ACP

Personal beliefs, cultural background, and religion can have a strong influence on ACP choices. For example, some may wish to refuse certain medical interventions on religious grounds, while others may prioritise being cared for at home.

Respecting these differences is a key part of making ACP meaningful. This requires sensitivity, active listening, and sometimes involving community or faith representatives in discussions.

Understanding the context of a person’s life helps create a plan that reflects who they are, not just their medical condition.

Storing and Accessing ACP Documents

ACP documents need to be accessible at the right time. Storing them in a safe place and sharing copies with trusted people is essential. In the UK, care providers often upload details to electronic patient records, meaning healthcare staff can view them when needed.

Common storage and access approaches include:

• Providing a copy to the GP.
• Keeping a paper copy in a visible place at home, such as in a clearly labelled folder.
• Sharing a copy with family members and any appointed attorneys.
• Using hospital or care home records for easy access by staff.

If documents cannot be found quickly in an emergency, the ACP may not be followed as intended.

Final Thoughts

Advanced Care Planning in health and social care is about giving individuals a voice in their future treatment and support, even if they cannot speak for themselves later. It is a personal process that reflects values, beliefs, and preferences. By having open conversations, documenting decisions, and making sure these records are accessible, people can shape their own care and reduce uncertainty for everyone involved.

ACP is relevant to all adults, not just those living with serious illness, and can bring peace of mind to individuals and their loved ones. While barriers exist, taking time to discuss and record future wishes can make a real difference in ensuring care reflects what matters most to each person.