Distress at the End of Life
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Tips for Nurses:
Distress at the End of Life

What it is: Distress at the end of life, also known as existential distress, death distress, or death anxiety, refers to the emotional suffering of dying which includes thoughts about:

  • death
  • the meaning of life
  • loneliness
  • loss of dignity
  • loss of control
  • achieving life’s goals.

Why it matters: People with life-limiting illnesses often suffer distress at end of life.

Older people with limited ability to connect with others can also have existential loneliness with strong feelings of emptiness, sadness, and longing. This can lead to anxiety and depression. Nurses and careworkers are well placed to observe signs of distress that might indicate a person’s need for assistance.

What I need to know: In people needing palliative care, distress at the end of life may lead to a wish for hastened death.

Existential therapies including meaning-centred interventions, supportive-expressive groups, cognitive therapy, life review, dignity therapy, and hope interventions may help with quality of life and wellbeing in the short-term.

A few psychotherapies can treat distress at the end of life in the elderly, including reminiscence therapy. Acknowledging and supporting a person’s spirituality has been shown to reduce the distress that many people experience when they are ill or dying.

Pet therapy or animal-assisted therapy may help.

Pharmacotherapy has not been well studied.

Actions

 


Psychotherapies are recommended for distress but pharmacotherapy is not.

Relaxation, touch and massage therapies may be helpful for reducing anxiety.

Look for signs of distress:

  • restlessness
  • breathlessness
  • muscle tension
  • irritability.

Sensitively asking ‘Is there anything else troubling you?’ or ‘Is there anything you would like to talk about?’ can help a person talk about things that worry them.

 

Tools

Tools that may be useful include:

Cornell Scale for Depression in Dementia (98kb pdf) - a 19-question interview tool for older people.

Geriatric Anxiety Inventory (GAI) - a 20-item self-report screening tool developed for the assessment of older people. Available under license.

 

My reflections:

 

When making an assessment it is also important to know what can be done for the person experiencing distress at the end of life. What approaches to this are used in my workplace?
 

How can I support a client or resident expressing distress at the end of life?

See related palliAGED Practice Tip Sheets:

Anxiety

Psychosocial Assessment and Support

Spiritual Care


 

For references and the latest version of all the Tip Sheets visit www.palliaged.com.au/PracticeTipSheets

 

CareSearch is funded by the Australian Government Department of Health and Aged Care.
Updated July 2022

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