Terminal Restlessness: Definition and Management
Terminal restlessness is a form of agitated delirium that occurs in dying patients, characterized by physical agitation, cognitive impairment, and apparent suffering during the hours or days before death. 1 It affects between 25% and 88% of dying patients and represents one of the most common refractory symptoms at the end of life. 2
Clinical Presentation
Terminal restlessness may manifest as:
- Thrashing or agitation 3
- Involuntary muscle twitching or jerks 3
- Fidgeting or tossing and turning 3
- Yelling or moaning 3
- Cognitive impairment with confusion 1
- Fluctuating levels of consciousness 4
Relationship to Delirium
Terminal restlessness shares many clinical features with delirium and is often considered a subtype of delirium occurring specifically at the end of life:
- It may present as hyperactive (agitated), hypoactive (withdrawn), or mixed forms 4
- The symptoms typically fluctuate throughout the day 4
- It is often multifactorial in nature, exacerbated by the progressive shutdown of multiple body systems 3
Causes and Contributing Factors
Terminal restlessness is often multifactorial, with potential causes including:
- Medication side effects, particularly from opioids, antisecretory agents, anxiolytics, antidepressants, antipsychotics, and steroids 5
- Metabolic disturbances related to organ failure 3
- Unrelieved physical symptoms (pain, dyspnea, urinary retention) 3
- Psychological distress (anxiety, fear, unresolved issues) 4
Impact on Patients and Families
Terminal restlessness has significant impacts:
- For patients: It represents a form of refractory suffering that can dominate consciousness and diminish quality of life in final days 4
- For families: It causes distress, feelings of helplessness, and can complicate grief 1
- For healthcare staff: It creates moral distress and challenges in providing appropriate end-of-life care 1
Assessment
Assessment should focus on:
- Differentiating between reversible and irreversible causes 5
- Identifying potentially treatable underlying factors 3
- Evaluating the level of distress experienced by the patient 4
- Understanding the impact on family members 1
Management Approaches
Non-pharmacological Interventions
- Creating a calm environment with familiar people and objects 3
- Providing reassurance and emotional support 1
- Addressing spiritual or existential concerns 4
Pharmacological Management
When terminal restlessness is refractory to other interventions, medication options include:
- Neuroleptics (antipsychotics) are commonly recommended as first-line agents 2
- Benzodiazepines, particularly midazolam and lorazepam, have demonstrated effectiveness 2, 6
- Combination protocols may be necessary for adequate symptom control 2
Palliative Sedation
In cases where terminal restlessness becomes a refractory symptom:
- Palliative sedation may be considered as a measure of last resort 4
- The goal is to relieve intolerable suffering by inducing decreased awareness 4
- Midazolam is frequently used due to its rapid onset of action 6
- The level of sedation should be the least necessary to provide adequate relief of suffering 4
Special Considerations
Medication-Induced Delirium
- It's important to recognize that what appears to be terminal restlessness may sometimes be medication-induced delirium 5
- Up to half of all cases of delirium may be reversible with appropriate intervention 5
- Review of medications and dose adjustments should be considered before implementing sedation 5
Family Support
- Families need clear communication about the nature of terminal restlessness 1
- Information about treatment options and expected outcomes should be provided 1
- Emotional support for family members witnessing terminal restlessness is essential 1
Ethical Considerations
- The primary goal is relief of suffering while preserving dignity 4
- Decisions about sedation should be made with consideration of patient preferences when possible 4
- The intent of sedation is relief of suffering, not hastening death 4
- Research shows that appropriate palliative sedation does not shorten survival 4