Assessing distress

Managing distress and suffering

Life-limiting illnesses such as cancer or end-stage organ failure may, in some people, cause significant distress and suffering. 

Key points

Distress levels tend to vary at different timepoints in an illness - often peaking at diagnosis, and at other turning points in the course of the disease. 

• High levels of distress affect a person’s ability to cope with their illness, its symptoms and its treatment, and with decision making about treatment and care
• Distress affects not just the patient but also, often, their family.

Distress may be experienced as psychological, emotional, spiritual, social or physical, or any combination of these.

Distress may range from painful emotion states that come and go as part of the adjustment process, to significant mental health problems requiring specialised help. These include:

• Anxiety disorders, panic disorders, post-traumatic stress disorder (PTSD)
  
• Depression
  
• Adjustment disorder.
  

Risk factors for higher levels of distress include:

• Poor performance state, difficulty managing activities of daily living (ADLs)
  
• Sense of being a burden
  
• High symptom burden from disease or treatment
  
• Family conflict or difficulties
  
• History of depression or other mental health issues
  
• Younger patients, female patients
  
• Lower levels of education.
  

Routine screening for distress is important because these problems may not be raised by patients spontaneously, and timely supportive care can greatly improve the person’s quality of life. Appropriate referrals could include:

• Social worker
  
• Pastoral care worker or person from their faith community
  
• Mental health professional
  
• Palliative care specialist
  
• Check local HealthPathways for referral processes.