3.5. Explain reasons for sharing information when providing end of life care

This guide will help you answer 3.5. Explain reasons for sharing information when providing end of life care.

Sharing information when providing end-of-life care is an important aspect of delivering effective and respectful support to individuals and their families. Communication helps ensure care is personalised, coordinated, and meets the individual’s preferences. It also minimises misunderstandings and errors, which could impact the quality of care. In this guide, we will explore some of the reasons why information sharing in this context is necessary.

Supporting High-Quality Care

End-of-life care focuses on improving the quality of life for those who are dying and their families. To achieve this, health and social care workers need to have a full understanding of the person’s medical needs, wishes, and priorities. Sharing information ensures all professionals involved are working with the same knowledge and goals.

Professionals may need to communicate information about:

• The person’s diagnosis and prognosis.
• Medication requirements, including pain relief.
• Preferred place of death, such as home, hospice, or hospital.
• Religious, cultural, or spiritual needs.
• Advance care plans or DNACPR (Do Not Attempt Cardiopulmonary Resuscitation) requests.

Without effective sharing, gaps or duplication in care may occur, leading to unnecessary stress or discomfort for the person receiving care.

Ensuring Care is Coordinated

Many individuals receiving end-of-life care require support from multiple services, including doctors, nurses, carers, and palliative care specialists. Clear communication between these professionals is essential for coordinated care.

When information isn’t shared appropriately:

• Appointments may conflict or be poorly timed.
• Medication changes might go unnoticed, leading to overdoses or missed doses.
• Important preferences or instructions might be overlooked.

Sharing information ensures everyone is aware of the care plan, saving time and improving outcomes for the person and their family.

Avoiding Mistakes and Misunderstandings

Accurate information sharing reduces the risk of mistakes. For example, a lack of communication could lead to:

• Allergies or sensitivities being overlooked.
• Incorrect assumptions about the person’s wishes.
• Missed referrals to palliative services.

Mistakes can severely impact the person’s experience and overall wellbeing. It is essential that all providers involved have access to the latest and most accurate information.

Respecting the Person’s Preferences

People receiving end-of-life care often have specific wishes regarding their treatment, care setting, or who they wish to be involved in their care. Sharing this information with team members ensures these wishes are respected.

Preferences might include:

• Listening to a favourite type of music.
• Declining certain clinical interventions.
• Avoiding particular foods or drinks.
• Choosing specific visitors or family members to be present.

Health and social care professionals need to understand these wishes and abide by them to uphold the person’s dignity and rights.

Meeting Legal and Ethical Responsibilities

In the United Kingdom, health and social care workers are legally bound to share certain types of information in specific situations. For example, if a person appears to be at risk or if their care requires coordination between different agencies.

Relevant legislation includes:

• The Health and Social Care Act 2012, which supports information sharing to improve patient care.
• The Mental Capacity Act 2005, which ensures decisions are made in the best interests of individuals who cannot make decisions themselves.
• The Data Protection Act 2018, which governs how personal information must be handled.

Sharing information must balance the need to protect confidentiality with the need to deliver safe care.

Supporting Families and Loved Ones

Families play a key role in providing emotional and practical support to individuals receiving end-of-life care. Clear communication about the person’s condition and care plan can help families feel included and prepared.

Sharing appropriate information helps families:

• Understand the person’s condition and prognosis.
• Make informed decisions about care.
• Access support services such as counselling or bereavement advice.

It is also important to listen to families and include them in discussions, as they often have insights into the person’s preferences which can improve their overall care.

Respecting Cultural and Spiritual Needs

For many individuals, cultural or spiritual beliefs play a significant role in how they wish to be cared for as they approach the end of life. Sharing information about these needs helps staff deliver care that aligns with the individual’s values.

This might include:

• Rituals that should be performed before or after death.
• Ceremonial practices or prayers.
• The importance of certain clothing or objects.

Information should be shared sensitively and respectfully, ensuring all staff involved in the individual’s care act appropriately and with understanding.

Improving Emotional and Psychological Support

End-of-life care often involves managing not only physical symptoms but also emotional and psychological wellbeing. Sharing information about the person’s mood, fears, or coping strategies can help staff provide better support.

For example:

• If a person is anxious about dying on their own, staff can ensure they are not left alone.
• If someone expresses a desire to see a particular family member, this can be prioritised.
• If someone has unresolved concerns, counselling or pastoral support can be offered.

Open communication ensures emotional care is tailored to the individual’s needs.

Supporting Continuity of Care

End-of-life care can span several months, involving multiple appointments with different professionals. Information sharing supports continuity, so care remains consistent even when different staff are involved.

For instance, if one carer learns the person prefers warm blankets, this information can be passed on to the next carer. Small but significant details like this matter greatly in providing compassionate care.

Maintaining Trust and Transparency

When information is shared appropriately, it builds trust among professionals, families, and the individual receiving care. Honesty about the care plan helps everyone feel reassured that the person’s needs are being prioritised.

Hiding or withholding information can lead to frustrations and conflicts, damaging relationships and making the delivery of care more difficult.

Addressing Prognosis with Sensitivity

Sharing information about prognosis—the expected progression of the person’s condition—can be delicate. When done with care, it allows the person and their loved ones to prepare for the future.

Professionals must provide this information with empathy, using plain language and avoiding medical jargon. This helps everyone involved understand the reality of the situation without unnecessary distress.

Protecting Confidentiality

Despite the importance of sharing information, confidentiality must always be respected. Sensitive details should only be shared with those directly involved in the person’s care.

Examples of confidentiality measures include:

• Using secure systems for storing and transmitting information.
• Ensuring discussions take place in private settings.
• Avoiding unnecessary disclosure during conversations or meetings.

Breaching confidentiality can have serious legal and ethical consequences. It can also damage trust between staff, patients, and families.

Final Thoughts

Sharing information in end-of-life care is necessary for many reasons. It ensures care remains coordinated, safe, and aligned with the individual’s wishes. It supports families, addresses cultural and spiritual needs, and protects the wellbeing of all involved.

Care providers must balance the need to share information with their legal and ethical responsibilities to protect confidentiality. By doing so, they deliver compassionate and dignified care for individuals at the end of life.