Why is it important to understand symptoms experienced at the end of life?
One of the foci of palliative care is to provide relief from symptoms to help the older person have a better quality of life as they near death. [1, 2] Adequately managing these symptoms may also reassure family members that their loved one is comfortable.
Pain is commonly reported, where families, caregivers and/or aged care staff also know how distressing it can be for older people at the end of life. [3, 4] While not the only symptom, it is a significant problem as pain severity can range from moderate to high during the last two weeks of life. [4]
Addressing end-of-life symptoms may increase the older person’s feeling of dignity and overall quality of life, decrease physical discomfort and distress, [1] and ease the burden experienced by family. [5] Aged care workers should therefore be equipped with the knowledge and skills to recognise symptoms and their prevalence, and provide appropriate care for the older person. [6]
Want to learn more?
palliAGED offers guidance on how to manage common symptoms at the end of life.
CareSearch also provides clinical evidence summaries found from systematic reviews. Those available under the Clinical practice section outline information relevant to specific symptoms.
What can we do?
Assessing and identifying symptoms
Care teams:
- Understand symptoms that are commonly experienced at the end of life and how to identify new, changing, or poorly managed symptoms for prompt review.
Organisations:
- Implement appropriate tools and processes that ensure timely identification and review of symptoms at the end of life, with actionable protocols detailing steps and strategies to manage symptoms when they arise or change.
- Provide education and training programs on symptom management for healthcare professionals, especially for complex symptoms like pain, delirium, and existential distress. Training should include communication strategies for addressing symptoms in older patients with cognitive impairment such as dementia.
The evidence:
- Comprehensive palliative care assessments that include pain, depression, dyspnoea (difficulty with breathing), emotional distress, and delirium / agitation levels are important to undertake, and have been mapped as a quality indicator for palliative care relevant to older people with dementia. [7]
- Appropriate assessment and treatment of symptoms like pain are needed to manage them effectively. [8] Symptoms like pain, dyspnoea, as well as psychological and social needs can be addressed more effectively. [8]
Care planning
Aged care workers:
- Create a comprehensive, tailored, and well-documented care plan (e.g., as part of an advance care plan or directive) to support the delivery of care that identifies and manages changes in symptoms and pain.
Organisations:
- Establish and maintain multidisciplinary palliative care teams to provide holistic care tailored to the physical, emotional, mental, and spiritual needs of older people.
- Implement quality improvement initiatives to enhance palliative care and end-of-life care for older people e.g., regular audits, feedback mechanisms, and benchmarking against best practices. This will help ensure that care meets established standards and guidelines.
The evidence:
- Multidisciplinary input is a quality indicator that has been mapped to optimal symptom management and comfort care related to palliative care for older people with dementia. [7]
- Baseline comfort goals for the older person are important to establish as they have been linked to residents being more satisfied with end-of-life care. [9]
- Older people with multiple comorbidities can avoid unnecessary hospitalisation with effective communication and continuity of care in place among the care team members. [3]
Managing symptoms at the end of life
Health professionals:
- Manage end-of-life symptoms using pharmacological (e.g., use of opioid analgesia, breakthrough analgesia) and non-pharmacological interventions (e.g., repositioning, managing continence).
- Facilitate timely access to equipment and medications for symptom and pain management.
- Review medicines (and routes of administration) to promote optimal symptom control.
- Regularly monitor prescribed medications for efficacy and side effects.
- Ensure anticipatory medications are available, prescribed, administered, and regularly reviewed where appropriate. Implement a process for their safe administration and use (when required).
Organisations:
- Along with thorough palliative care assessments and multidisciplinary input, follow-up assessments should determine how effective the interventions were and review proof of symptom relief. [7]
The evidence:
- Approximately 40% of residents in care facilities reportedly had severe pain at the end of their life. [3] Lack of appropriate assessment, monitoring, and management for pain and other end-of-life symptoms have been noted. [3]
- Declining physical function can contribute to more complicated symptoms and care needs that can affect the older person’s health-related quality of life. [8]