2.5 Describe how a long-term condition relates to end of life care

This guide will help you answer 2.5 Describe how a long-term condition relates to end of life care.

Long-term conditions are illnesses or health conditions that last for a year or more. These conditions often require ongoing medical support, lifestyle adjustments, and a degree of long-term planning. Examples include diabetes, chronic obstructive pulmonary disease (COPD), heart disease, dementia, and cancer. In cases where the condition advances or treatments are no longer effective, the person may begin to approach the end stage of their life. End of life care becomes relevant during this time, ensuring their physical, emotional, and social needs are addressed.

The Link Between Long-Term Conditions and End of Life Care

Long-term conditions can significantly impact life expectancy and quality of life, especially in severe or progressive cases. For people living with advanced stages of a condition, their needs change from focusing on management or recovery to ensuring comfort and dignity. This transition requires planning and coordination to provide appropriate care and support.

Some key ways a long-term condition relates to end of life care include:

• Progressive nature: Many long-term conditions, such as dementia or cancer, become progressively more severe over time. As symptoms worsen, individuals may become increasingly dependent on care and support.
• Symptom management: People with long-term conditions often experience distressing symptoms like pain, breathlessness, fatigue, or confusion. End of life care prioritises managing these symptoms effectively.
• Psychological impact: Living with a chronic illness can cause emotional distress, depression, or anxiety. At the end of life, these feelings are often heightened. Care should consider emotional and mental health support.
• Decisions about care: Individuals may need to express their preferences for end of life care, including decisions around treatments, hospitalisation, or preferred places to die, such as home or hospice.

Meeting Physical Needs in End of Life Care

The physical symptoms experienced by individuals with long-term conditions can become more intense towards the end of their life. Effective care involves identifying these symptoms early and providing adequate intervention. Common physical needs include:

• Pain management: Chronic conditions like cancer often lead to significant pain. Pain relief is typically provided through medications, such as opioids and non-opioid analgesics.
• Addressing breathlessness: COPD and heart failure might cause breathing difficulties. End of life care may involve oxygen therapy, specialised breathing techniques, or ventilation support.
• Nutritional needs: Conditions may hinder a person’s ability to eat or drink. Support may involve providing special diets or, where necessary, feeding alternatives such as tube feeding.

Addressing Emotional and Psychological Needs

The emotional impact of a long-term condition is considerable, and these concerns intensify with the approach of end of life. Feelings such as fear, sadness, guilt, and regret are common. Care providers should focus on these areas to provide reassurance and comfort:

• Counselling or therapy: Emotional wellbeing can be supported through professional therapy, helping individuals process their thoughts or fears.
• Listening: Simply being available to listen can help people feel respected and valued.
• Spiritual support: Some individuals might seek to connect with their beliefs or spirituality when facing end of life challenges. Spiritual care or religious support may be requested.

Social Needs for Individuals and Families

End of life care does not solely address the individual’s needs but also considers the family and social connection surrounding them. Living with a long-term condition can have a ripple effect on others, particularly carers or close family members. Support may include:

• Open communication: Encouraging families to discuss concerns, wishes, and feelings in a supportive space helps them cope with the situation.
• Practical help: Families may need assistance with care tasks or navigating services, such as arranging appointments or accessing benefits.
• Bereavement support: Families may require guidance and emotional support during and after the loss of a loved one.

The Role of Advanced Care Planning

Advanced care planning allows individuals with long-term conditions to outline their preferences for end of life care while they are still able to communicate clearly. This ensures their wishes are respected, both in their care and posthumously. Examples include:

• Recording preferences for life-sustaining treatments, such as resuscitation.
• Indicating a preferred place of care, such as home, hospital, or hospice.
• Discussing the type of medical interventions they feel comfortable receiving.

For someone living with a long-term condition, these conversations can provide reassurance about control over their care. Once completed, these plans should be shared with close family members and professionals involved.

Challenges for Care Professionals

Providing care for individuals with long-term conditions at the end of life presents unique difficulties for staff, such as:

• Variable disease progression: People experience illnesses differently, making it difficult to predict when end of life care might be required.
• Communicating prognosis: Discussing the approach of end of life can be uncomfortable for both staff and families, requiring sensitivity and empathy.
• Balancing hope and realism: It can be hard to support individuals and families as they hope for recovery while preparing for the possibility of death.

Palliative and Hospice Care Support

Palliative care is a specialised service that focuses on improving the quality of life for individuals with advanced conditions. Similarly, hospice care provides holistic support for those nearing end of life. These services complement traditional healthcare by focusing on:

• Pain relief and symptom management.
• Social support for families and carers.
• Dignity at the end of life.

These services may operate in hospitals, community settings, or as hospices. A referral often helps manage the transitions from standard treatment to end of life care.

Legal Frameworks and Ethical Considerations

Professionals providing care for individuals with long-term conditions at the end of life must follow ethical and legal guidelines in the UK. Key principles include:

• Consent: People should provide informed consent for treatments or interventions, unless they lack capacity.
• Mental Capacity Act 2005: This legislation outlines how to support individuals who cannot make decisions about their care.
• Do Not Attempt Resuscitation (DNAR): Respecting the choices made by a person and documenting their decision prevents unnecessary distress.
• Equality and diversity: Care provided must be respectful of backgrounds, faiths, and lifestyles without discrimination.

Personalised and Dignified Care

End of life care for those with long-term conditions should always focus on dignity, individual choices, and respect. In practice, this means:

• Treating the individual as a person, not just a condition.
• Recognising how their personal values shape their decisions about care.
• Supporting comfort by minimising pain and distress.

Final Thoughts

Living with a long-term condition often involves challenges, particularly when the disease progresses to an advanced stage. End of life care is an integral part of the support provided in such situations, addressing physical, emotional, and social needs during this sensitive time. Coordination between professionals, families, and individuals ensures care is carried out with dignity and respect for all involved.