2.11 Describe when details of the advance care plan can be shared with others

This guide will help you answer 2.11 Describe when details of the advance care plan can be shared with others.

An advance care plan sets out a person’s wishes and preferences about their future care and treatment. It is created while the person still has capacity to make decisions for themselves. The plan can include details about medical care, preferred place of care, religious and cultural needs, and who should be involved in decisions if the person loses capacity later.

An advance care plan is not just a piece of paper. It represents the person’s voice and guides health and social care workers on how to respect their wishes. In the UK, advance care plans work alongside legal frameworks such as the Mental Capacity Act 2005 and must comply with confidentiality rules.

Sharing the details of an advance care plan is a sensitive matter. Information should be handled with care and only shared when there is a clear and lawful reason to do so.

Core Principles for Sharing Information

Information in an advance care plan is personal and private. It is classed as confidential health information under the Data Protection Act 2018 and UK GDPR. These laws mean that personal details must be kept secure and only shared when allowed by law or with the person’s permission.

There are situations in health and social care where sharing is permitted or required. These centre around:

• The person’s consent
• Legal obligations
• Acting in the person’s best interests if they lack capacity
• Protecting life or preventing serious harm

In every case, sharing must be proportionate. This means giving the right amount of information to the right person for the right reason.

Sharing with the Person’s Consent

If the person has mental capacity and agrees to share details of their plan, you can pass the information to others involved in their care. This can include:

• Family members or close friends they have named
• Health professionals such as GPs, nurses, or palliative care teams
• Social care staff supporting their daily living
• Legal representatives

Consent should be clear and preferably written so there is a record. Verbal consent may be acceptable in urgent situations, but it is better to confirm it in writing afterwards. The person should be told exactly what will be shared, with whom, and why.

Sharing with consent respects the person’s right to control their own information. It helps ensure their wishes are carried out if their condition changes.

When the Person Lacks Capacity

If the person can no longer make decisions or give consent, the Mental Capacity Act 2005 provides the framework for deciding what to do. Workers must act in the person’s best interests.

This might involve sharing relevant details of the advance care plan so care teams know what treatment the person would want or avoid. For example, if the plan states the person does not want to be resuscitated, this must be communicated to those providing emergency care.

In such cases:

• Only share the information needed for the decision at hand
• Share with professionals or individuals who have a lawful role in the person’s care
• Check if there is a Lasting Power of Attorney for health and welfare who should be involved

Legal Requirements to Share

Certain laws can require the sharing of information from an advance care plan without consent. These include:

• Court orders
• Safeguarding adults or children from harm or abuse
• Reporting some infectious diseases to public health authorities

In these cases, the duty to protect individuals or comply with the law takes priority over confidentiality. Only the relevant details should be shared and the reasons should be recorded.

Emergency Situations

In an emergency, you may need to share the details quickly so that urgent care decisions can follow the person’s wishes. If there is a valid Do Not Attempt Cardiopulmonary Resuscitation (DNACPR) order in the advance care plan, emergency services must know this immediately.

In such moments:

• Share with paramedics, doctors, or nurses directly involved
• Give only the necessary parts of the plan
• Record the action taken and the reason afterwards

Time is often short in emergencies, but it is still right to respect the plan as much as possible.

Sharing with the Care Team

Health and social care often involve many different professionals. For care to be coordinated, all relevant staff need access to up-to-date information about the person’s wishes.

Sharing may include:

• Updating records in secure digital systems used by the care team
• Circulating copies to named professionals such as district nurses or hospice staff
• Telephone or in-person briefings in complex cases

The person should know who is on their care team and agree to the sharing in normal circumstances. Access to the plan should be limited to staff who need it for their work.

Family and Friends

Friends or family may be involved in discussions about the advance care plan if the person chooses this. They can offer emotional support and help communicate the person’s wishes.

Involving them means:

• Getting consent from the person when they have capacity
• Being clear which parts of the plan can be shared
• Respecting boundaries where the person wants some details kept private

When the person no longer has capacity, family and friends may still be told relevant parts if it helps them support the care plan or make decisions in consultation with professionals.

Professional Responsibilities

All health and social care workers have a duty to protect confidentiality. This is part of professional codes such as the Nursing and Midwifery Council (NMC) Code or the Health and Care Professions Council (HCPC) Standards of Conduct.

When sharing advance care plans, workers should:

• Follow organisational policies
• Seek advice from a supervisor or safeguarding lead if unsure
• Document consent or the lawful reason for sharing
• Keep copies and records secure

Breaking confidentiality without a lawful reason can lead to disciplinary action or legal consequences.

Secure Methods of Sharing

The method of sharing matters just as much as the reason. Unsafe sharing can breach data protection laws. Acceptable methods include:

• Encrypted emails between professionals
• Secure electronic health records systems
• Hand delivery of documents in sealed envelopes
• Private conversation away from others

Avoid leaving documents in public areas or sending unencrypted messages. Always check the recipient’s identity before sending information.

Cultural and Religious Considerations

An advance care plan may contain requests based on the person’s beliefs, traditions, and values. Sharing these details can help others provide respectful and appropriate care.

For example, the plan may say the person wants certain prayers before death, or specific food restrictions if they can no longer speak. These parts can be shared with chaplains, care staff, or family as needed.

Consent rules still apply, but failing to pass on this information could lead to care that goes against the person’s values.

Avoiding Unnecessary Sharing

Not every detail in an advance care plan needs to be shared with everyone. Information should be shared on a need-to-know basis.

For example:

• A physiotherapist may only need to know mobility and comfort preferences
• A GP might need the full medical treatment section
• A carer preparing meals might only need to know dietary requirements

Keeping sharing to what is necessary protects dignity and privacy.

Recording and Accountability

Any time you share details of the advance care plan, make a clear record. This should include:

• What information was shared
• With whom it was shared
• Why it was shared
• How consent was given or what lawful basis applied

This protects you and shows that the correct process was followed. It also helps colleagues understand what has already been communicated.

Times When Sharing is Not Allowed

There are situations where you must not share the contents of an advance care plan:

• When the person has capacity and has refused permission
• When there is no lawful reason to share
• When the request to share comes from someone without the right to access
• When the recipient will not be involved in providing care or supporting the plan

Not everyone who asks has a valid reason to see the plan. Protecting it is part of respecting the person’s rights.

Good Communication Practices

Before sharing, have a clear conversation with the person if possible. Explain:

• Why sharing could help their care
• Who will see the information
• What parts will be shared
• Their right to say no to some or all sharing

This open approach promotes trust and encourages people to be honest in their advance care plans, knowing the details will only be shared appropriately.

If the person cannot communicate, professionals must act together and use legal guidance to decide what is in their best interests.

Training and Awareness

Staff working with advance care plans need regular training. This should include:

• Data protection and confidentiality rules
• The Mental Capacity Act 2005 principles
• How to identify lawful reasons for sharing
• Recording and storing information securely

Well-trained staff are more confident in making the right decisions at the right time.

Final Thoughts

An advance care plan is a tool that helps people stay in control of their treatment and care, even if they lose the ability to speak for themselves. Sharing the plan at the right time ensures that everyone involved knows the person’s wishes and respects them.

The key is to balance two responsibilities. One is the duty to protect the person’s private information. The other is to share the right information with the right people when it supports safe, respectful, and lawful care.

Every decision to share should be thoughtful, lawful, and recorded. By following clear consent rules, using secure methods, and involving only those who need to know, workers can protect privacy and deliver care that truly reflects the person at the heart of the plan.