3.3 Explain why, with their consent, it is important to pass on information about the individual’s wishes, needs, and preferences for their end of life care

This guide will help you answer 3.3 Explain why, with their consent, it is important to pass on information about the individual’s wishes, needs, and preferences for their end of life care.

End of life care is a sensitive and significant area in health and social care. Every person has unique wishes, needs and preferences about how they would like their care to be managed as they reach the last stages of life. Passing on this information to colleagues and other professionals, but only with the individual’s consent, is a responsibility for all health and social care workers. This supports the delivery of care that respects the individual’s dignity, promotes their wellbeing and aligns with their beliefs and values.

Individualised Care and Person-Centred Values

Every person is unique. Everyone has individual values, beliefs, and preferences. This is especially important in end of life care. Approaching care in a person-centred way means focusing on the person’s specific wishes, not simply following a standard routine. This approach puts the individual at the centre of care decisions.

Passing on information about the person’s wishes, needs, and preferences allows teams to:

• Respect their dignity and choices
• Adjust care planning to meet what matters to them
• Avoid treatments or routines that might cause upset or distress
• Support their physical, emotional, social and spiritual needs

For example, some people may have religious or cultural practices they want to observe. Others may wish to avoid particular types of interventions or want specific people present at certain times. If staff do not know this information and cannot act on it, the person may not experience the comfort or respect they deserve.

Legal and Ethical Considerations

Consent is at the heart of passing on information. No information about the individual’s wishes, needs, and preferences for end of life care should be shared without their clear agreement unless there are legal requirements to disclose (for example, risk of harm).

Sharing information, with consent, supports the following legal and ethical principles:

• Right to autonomy – every person has the right to make decisions about their care
• Right to privacy – personal wishes must only be passed on to those who need to know
• Right to be involved in decisions – individuals should be central to all planning about their own care

Laws like the General Data Protection Regulation (GDPR) and the Data Protection Act 2018 protect people’s rights. Workers who share sensitive information unlawfully may be breaking the law and putting individuals at risk.

Communication Among Professionals

Sharing information about the individual’s wishes, with their agreement, helps teams work in a coordinated way. End of life care can involve staff from several professions, such as nurses, doctors, care workers, chaplains, and hospice teams.

Good communication ensures:

• Everyone understands what is important to the person
• Care plans are consistent and up to date
• The risk of misunderstandings is reduced
• The person does not need to repeat information during a difficult time

For example, if the evening staff do not know about the person’s preference regarding pain relief or visitors, the care given may not match their expressed wishes. This can lead to distress for the person and family.

Respecting Dignity and Reducing Distress

Knowing someone’s end of life wishes can prevent unnecessary upset. These can be sensitive or deeply personal, such as whether someone wants to be washed by a person of a certain gender, if they want lights dimmed, or if they wish to listen to particular music.

By passing on this information with consent, all staff can support the person’s dignity. Unwanted interventions, such as resuscitation attempts when someone has declined them, can be avoided. Staff might adjust routines to match preferences, avoid topics that cause worry, or provide emotional support in ways the person values.

This passing on of information helps prevent the person or their family having to restate their wishes at a stressful time.

Consistency and Continuity of Care

Providing consistent care is important, particularly in environments where different staff support a person at different times. Passing on information about wishes, needs, and preferences means all staff can work to the same plan.

Benefits include:

• Less confusion and miscommunication for everyone involved
• Reduced risk of missed medication or incomplete care
• Increased satisfaction for individuals and their families
• A sense of security for the person as they approach the end of their life

For example, if a person has said they do not wish to be woken for medication unless in pain, all staff need to know and act on this. If only some workers know, that wish may not be respected when teams change over.

Family, Friends and Those Important to the Individual

Many people want family or close friends involved in their care. With the individual’s agreement, passing on their wishes allows staff to:

• Recognise who the person wants involved in their care
• Inform those people about important moments, such as changes in condition
• Allow visits at preferred times
• Involve family or friends in care tasks if the person wants this

This approach builds trust with family members, helps them feel included and reassured, and can provide valuable emotional comfort to everyone involved.

Meeting Holistic Needs

Holistic care means looking after the whole person, not just their physical symptoms. Mental, emotional, social and spiritual needs can be as important as medicine or treatment.

Consent-based sharing of wishes and preferences can support:

• Access to preferred activities or rituals
• Chaplaincy or pastoral care for spiritual needs
• Support with communication where language or cultural needs differ

Staff who know about a person’s values can avoid actions that may go against those values and can actively support important practices as end of life approaches.

Supporting Advance Care Planning

Advance care planning involves talking with someone about their preferences and writing these down for the future. These preferences might include:

• Who should make decisions if they cannot
• Where they wish to receive care
• What medical interventions they want or do not want
• Spiritual or cultural practices to follow

Once these wishes are agreed and consent is given, sharing the information means everyone can act according to the person’s wishes. This reduces uncertainty and supports the best possible quality of life.

Avoiding Unwanted Interventions

There are many medical treatments and interventions available at the end of life. Not everyone wants every possible intervention. For instance, a person may decline resuscitation, intravenous treatments, or hospital admission.

By sharing these choices, with the individual’s permission:

• Staff do not offer unwanted options
• Stress and distress from unwanted procedures are avoided
• The person feels listened to and respected

Passively withholding this information can lead to unwanted outcomes, undermining trust and dignity.

Professional Accountability

All social care workers have a duty to act professionally. This duty involves:

• Gaining express consent from the person before sharing information about their care
• Recording and passing on accurate details about care preferences
• Respecting boundaries around need-to-know information

Professional bodies and employers may discipline workers who break protocols. Following these standards protects individuals and workers too.

Safeguarding and Risk Reduction

Sharing information can support safeguarding. Some end of life wishes may involve risks, such as refusing life-saving interventions. By recording and communicating these wishes with consent, staff can:

• Document reasons for care decisions
• Prevent inappropriate safeguarding alerts
• Ensure all care is legally and ethically justified

This protects both the person and the staff.

Clarity in Changes and Updates

People can change their minds. Someone’s wishes about care may vary over time or with their circumstances. Open communication, with the person’s consent, helps:

• Record and share updates promptly
• Make sure teams act only on current wishes
• Prevent confusion between what is past and what is current

Clear documentation makes sure the individual receives care that matches their most recent preferences.

Building Trust

People near the end of life are likely to feel anxious or vulnerable. When staff listen to their wishes and promise to pass them on, trust can develop.

Trust builds when the person sees all staff acting in line with what has been agreed. This sense of trust is vital for comfort and quality of life in the final stages.

Examples of Wishes, Needs, and Preferences

Wishes, needs, and preferences cover a wide range of topics. Some might include:

• What name or pronoun to use
• Pain management options, including when to offer pain relief
• Food and drinks they want or do not want
• Who to contact in emergencies or at the time of death
• Cultural or religious rituals at the bedside
• Whether to be at home, in hospital, or in a hospice
• What personal items they want nearby
• Who should or should not visit

All of these should be shared, with consent, to build a clear care plan supported by everyone.

Confidentiality and Privacy

Only share information with the individual’s clear consent. Some people may not want parts of their end of life care discussed with everyone. For example, they may let you share their dietary wishes but not their spiritual needs.

Information should be passed on:

• Only to those people who need to know
• Using agreed procedures (such as written care plans or meetings)
• In a respectful and sensitive way

Breaking confidentiality can damage trust and lead to complaints or legal action.

Documenting and Reviewing Wishes

Passing on information can involve recording wishes in a care plan or shared document. It is important to:

• Make records accurate and up to date
• Record only what has been agreed
• Update the record each time the person’s preferences change

Regular review meetings with the person and their family, if appropriate, should be held to keep everyone up to date.

Consent and Capacity

Not everyone can give consent due to illness or injury. The law says that people who have capacity (the ability to understand and make decisions) must give their agreement. If someone cannot decide for themselves, staff use legal processes such as best interests meetings and refer to documents like advance statements or Lasting Powers of Attorney.

Capacity can change with health. Always check this before sharing personal information.

Final Thoughts

Taking the time to find out, document, and pass on a person’s wishes for end of life care builds a sense of safety and respect for the individual. People do not want to repeat conversations about difficult topics, especially when unwell. They want to know their wishes will be followed and carried out by everyone involved.

Passing on this important information, with clear consent, supports dignity, comfort, respect and the right for each person to have care their own way. It reduces distress for the person and their loved ones and enables teams to work together with confidence and clarity. By acting on what the individual wants, you are helping to make their final days as comfortable and meaningful as possible.