Causes and presentation of distress in palliative care
Patients with palliative care needs commonly experience distress in response to the challenges associated with having a life-limiting illness; Common causes of distress in palliative care lists common causes of distress in palliative careRiba, 2019.
decline in quality of life and loss of independence
concerns about disease trajectory or treatment options
social factors:
- changed relationship with others
- relationship tensions
- family conflict
- financial stress
psychological concerns:
- feelings of loneliness, abandonment or isolation
- misconceptions and fears about how death will occur
- fear of being a burden to others
- concern about what will happen to family left behind [NB1]
existential or spiritual concerns:
- fear of dying or death (death anxiety)
- changed perception of self
- guilt or regrets about the life the patient has led
- uncertainty about what will happen after death
physical factors:
- changes in physical appearance
- physical symptoms (eg breathlessness, pain)
- functional decline
comorbid psychiatric disorders:
- panic disorder
- major depression
- generalised anxiety disorder
- disorders of substance use
Patients respond differently to the challenges associated with a life-limiting illness, and experience distress in a variety of ways. Patients with distress can have feelings of:
- anger
- anxiety
- depression
- irritability
- anguish
- shock
- despair
- sadness
- demoralisation
- vulnerability
- fear
- panic
- frustration.
These feelings may be expressed verbally (eg overt expressions of feeling overwhelmed or no longer able to cope), or through behaviour; for example:
- tearfulness
- social withdrawal
- agitation
- sleep disturbance
- sighing
- restlessness
- treatment refusal
- missing appointments
- changes in routine or habits
- poor appetite
- poor self-care
- increased use of alcohol or drugs.
Distress is commonly felt most intensely at specific times in the illness trajectory, such as time of diagnosis, following hospital discharge, disease progression or relapse, and in the last days of life. Distress severity ranges from mild intermittent distress to severe persistent distress that can contribute to the development of psychiatric disorders (eg major depression, generalised anxiety disorder) or a desire to die.
Distress can interfere with the ability to cope with physical symptoms and treatment of life-limiting illnesses. Distress can significantly decrease quality of life and may precipitate hospital admission.