4.1. Examine issues around sharing information in relation to end of life care

This guide will help you answer 4.1. Examine issues around sharing information in relation to end of life care.

Sharing information in end of life care is a sensitive and challenging aspect of health and social care work in the UK. It involves balancing the need for effective communication with ethical, legal, and practical considerations. Workers need to ensure that the individual’s wishes remain at the centre of care while complying with professional standards and legislation.

In this guide, we’ll explore some of the issues surrounding the sharing of information and guidance workers can follow to address them.

Confidentiality and Privacy

Confidentiality is a fundamental principle in end of life care. It involves protecting the individual’s personal details, medical history, and care preferences. Breaching confidentiality can damage trust between the individual, their family, and the care provider.

Legal frameworks, such as the Data Protection Act 2018 and the General Data Protection Regulation (GDPR), set strict rules for how personal information should be handled. Personal data must only be shared with authorised individuals and organisations who need it to deliver care. Workers must store information securely and limit access to only those with a legitimate need.

Digital systems can also play a role in confidentiality challenges. For example:

• Information stored electronically may be vulnerable to hacking if security measures are not strong enough.
• Passwords and encryption should always be used to protect digital records.
• Staff should never share login credentials with others.

It’s critical to ensure the individual’s consent is obtained before sharing their information unless there is a legal or safety-related justification for bypassing this.

Gaining Consent from the Individual

Consent is central to the sharing of information. In end of life care, the individual has the right to decide who should be informed about their condition, care, and wishes. Care workers should always seek explicit permission before discussing personal details with family members or other professionals.

Challenges in obtaining consent may arise if:

• The individual is unconscious or lacking capacity to make decisions.
• A disagreement exists between family members about what should or should not be shared.
• The individual specifically requests to keep certain information private, even from close relatives.

In cases where consent cannot be given, care workers should refer to legal and organisational guidance, such as the Mental Capacity Act 2005. This legislation sets out processes for acting in the “best interests” of individuals who lack capacity, ensuring their safety and dignity are maintained.

Balancing Professional Relationships with Families

In end of life care, relationships with families are often complex. Families may have their own emotional responses to the situation and may feel they are entitled to detailed updates about their loved one. Care workers must balance the family’s need to know with the individual’s right to confidentiality.

Challenges include:

• Deciding how much information can be shared with the family while respecting the individual’s wishes.
• Managing situations where family members disagree on what information they want or need.
• Responding sensitively to the emotional reactions of family members.

Good communication is the foundation for effective family relationships. Care workers can ensure they:

• Involve family members in general discussions about care, provided the individual consents.
• Use clear, plain language to explain care plans and medical issues without overloading families with too much detail.
• Provide emotional support by signposting families to counselling services, bereavement resources, or other relevant agencies.

Any disagreements or conflicts should be carefully recorded, and workers should involve senior staff if needed.

Cultural and Religious Sensitivities

Cultural and religious beliefs can shape how individuals and families approach end of life care. These beliefs may influence decisions around the sharing of information and who should have access to it.

For example:

• In some cultures, the family may expect to know more than the individual about their prognosis or treatment plan.
• Specific communication styles or terms may be preferred, depending on cultural values.
• Religious beliefs may dictate who can be involved in decision-making, such as requiring input from a faith leader.

Care workers must show cultural sensitivity by asking about and respecting these preferences. If necessary, interpreters or cultural liaison officers can be involved to ensure accurate and respectful communication.

Conflict Resolution Between Care Teams

End of life care often involves multidisciplinary teams. Nurses, doctors, social workers, and other professionals work together to deliver holistic care. This requires regular communication and information-sharing between team members.

However, conflicts can arise in professional teams, particularly regarding:

• Differences in opinions about prognosis or treatment options.
• Delays in sharing critical information, leading to unclear or inconsistent care.
• Varying interpretations of an individual’s care preferences.

Effective conflict resolution strategies include:

• Holding regular team meetings to encourage open communication.
• Referring to documented care plans to align the team’s approach.
• Seeking mediation through senior staff where disagreements escalate.

Maintaining clear channels of communication reduces errors and ensures the individual experiences consistent, high-quality care.

Managing Emotional and Psychological Impact

End of life care can be emotionally challenging for both care workers and families. Decisions about what to share, and with whom, can heighten feelings of anxiety, sadness, or anger.

For care workers, difficulties might include:

• Emotional strain from delivering difficult news to families.
• Fear of backlash or blame if information is miscommunicated.
• Feeling unsure in situations where available guidance is unclear.

To manage these challenges, workers can:

• Access support such as supervision sessions, where they can reflect on their practice in a safe and confidential environment.
• Attend training on communication skills specific to end of life care.
• Use structured tools like communication frameworks (e.g., SPIKES protocol) to break down difficult conversations.

It’s important to acknowledge the mental health needs of staff and to create an environment where asking for help is encouraged.

Handling Legal and Safeguarding Obligations

Legal and safeguarding responsibilities create additional challenges in sharing information. Care workers must follow these obligations, even if doing so conflicts with the wishes of the individual or their family.

For example:

• If the individual discloses details of abuse or neglect, this must be reported to safeguarding authorities.
• If a legal request for information is made by police or courts, workers must cooperate while maintaining respect for confidentiality.

Understanding organisational policies and legislation, such as the Care Act 2014, ensures legal obligations are met responsibly. It’s important to check guidance if workers feel unsure about their responsibilities in a specific case.

Improving Communication Skills

Communication skills are critical when sharing information in end of life care. Workers can take steps to improve how they communicate by following key principles:

• Always listen to the individual’s and family’s questions or concerns.
• Be honest and transparent while using language that is easy to follow.
• Use empathetic and non-judgemental body language.
• Avoid making assumptions about what people know or understand—always check.

Written communication is just as important. Care plans, records, and updates must be clear, accurate, and free from jargon. This reduces misunderstandings among team members.

Final Thoughts

Sharing information in end of life care requires a fine balance of ethical, legal, and emotional considerations. It is about respecting the individual’s rights, supporting the family, and ensuring seamless care delivery. Workers need to continually improve their knowledge and communication skills to navigate these scenarios effectively.

By keeping the person receiving care at the centre of decision-making, care workers can ensure they offer respectful and dignified support during a deeply personal and challenging time.