Recognising and responding to distress with a life-limiting illness

What it is

People diagnosed with a chronic or life-threatening illness experience many losses. Each person will respond in their own way and the same person may respond differently across their period of illness. How a person copes depends on the severity of the illness, their history of coping with stressful life events, and supports available to them.

Distress may range from painful emotional states that come and go as part of the adjustment process, to significant mental health problems (e.g. anxiety, depression) requiring specialised help.

Distress may be related to a range of emotional concerns, social and family worries, or concerns about symptoms, future disease trajectory and treatment options. These concerns often include:

  • regrets
  • fear of dying
  • feeling lonely, abandoned, or isolated as the illness progresses
  • fear of being a burden to others
  • misconceptions and fears about dying
  • finances and sorting out their affairs
  • concern about what will happen to those left behind
  • not knowing what will happen after death.

Why it matters

High levels of distress can affect a person’s ability to cope with illness, the symptoms they experience, their functional status, their ability to make decisions about treatment and care, and the outcome of their care.

In practice

Routine screening for distress is important because these problems may not be raised spontaneously by people in your care. Timely supportive care can greatly improve the person’s quality of life. You can:

  • incorporate open questions relating to distress into general conversations with the person
    • 'What do you feel about everything that is happening to you?' or
    • 'You seem (upset/anxious/depressed) today. Would you like to talk about how things are going?'
  • use a distress assessment tool e.g. the NCCN Distress Thermometer (167kb pdf)
  • ask:

    'What activities and which relationships bring you the most joy and meaning?'

  • use short screening questions to identify a person's spiritual foundation and indication of spiritual distress
    • 'What is the importance of spirituality or religion in your life?'
    • 'Is this providing support for you at this time?'

    This information was drawn from the following resources:

    1. Chang VT. Approach to symptom assessment in palliative care [Internet]. 2022 [updated 2022 Feb 28; cited 2022 Sep 26].
    2. Okon TR, Chrsitensen A. Overview of comprehensive patient assessment in palliative care [Internet]. 2021 [updated 2021 Nov 29; cited 2022 Sep 26].
    3. Therapeutic Guidelines Limited. Distress in palliative care [Internet]. 2016. [cited 2022 Sep 26].
    4. Therapeutic Guidelines Limited. Symptom assessment in palliative care [Internet]. 2016. [cited 2022 Sep 26].

    Page updated 14 November 2022