Existential Distress

Evidence Summary

The concepts of existential distress and existential loneliness need clarity and agreed definition. [1,2]  Dying brings decline in health, withdrawal from social networks, loss of normal roles, and the utter aloneness with the confrontation of the end of one’s existence. Existential distress at the end of life has been defined as hopelessness, burden to others, loss of sense of dignity, desire for death or loss of will to live [3] and threats to self-identity. [4,5] Existential Loneliness has entered the literature and 'is understood as an intolerable emptiness, sadness, and longing, that results from the awareness of one’s fundamental separateness as a human being.' [6]

Empirical studies have named a number of experiences that can be described as patient existential plight or distress. [7-11] There is significant relationship between cancer patient’s distress and the distress of his or her carer - they experience similar levels of distress. [12,13] There is some evidence, also that existential distress can adversely affect health care professionals. [14]

Screening of distress is still under development and recommendation of which tool to use depends on context of use. [15,16]  A number of interventions focused on reducing existential distress have been reviewed, although the quality of evidence is poor and study sizes are limited. [5] Most interventions showed short-term benefit but there was limited follow up beyond 6 months. [5] There is some controversy about the use of sedation to manage distress that is not physical in nature. [2] Research is limited and there is a need to adequately define the concept of existential distress, but there is agreement among clinicians that sedating patients for this condition is not appropriate. [17]

  

 

 

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Existential Distress
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Review Collection

Practice Implications

  • The multidisciplinary team needs to explore within its own organisation the best way to address patients’ existential needs. [18,19]
  • Recent research identifying stress in teams related to existential issues confirms that individual, group, institutional and cultural forces influence individual experience. [19-22]
  • Sedation should not be considered for existential distress [17]
  1. LeMay K, Wilson KG. Treatment of existential distress in life threatening illness: a review of manualized interventions. Clin Psychol Rev. 2008 Mar;28(3):472-93. Epub 2007 Aug 7.
  2. Rodrigues P, Crokaert J, Gastmans C. Palliative Sedation for Existential Suffering: A Systematic Review of Argument-Based Ethics Literature. J Pain Symptom Manage. 2018 Jun;55(6):1577-1590. doi: 10.1016/j.jpainsymman.2018.01.013. Epub 2018 Jan 31.
  3. Chochinov HM. Dying, dignity, and new horizons in palliative end-of-life care. CA Cancer J Clin. 2006 Mar-Apr;56(2):84-103; quiz 104-5.
  4. Henoch I, Danielson E. Existential concerns among patients with cancer and interventions to meet them: an integrative literature review. Psychooncology. 2009 Mar;18(3):225-36.
  5. Bauereiß N, Obermaier S, Özünal SE, Baumeister H. Effects of existential interventions on spiritual, psychological, and physical well-being in adult patients with cancer: Systematic review and meta-analysis of randomized controlled trials. Psychooncology. 2018 Nov;27(11):2531-2545. doi: 10.1002/pon.4829. Epub 2018 Aug 2.
  6. Ettema E, Derksen LD, van Leeuwen E. Existential loneliness and end-of-life care: a systematic review, Theor Med Bioeth. 2010 Apr;31(2):141-69.
  7. Morita T, Kawa M, Honke Y, Kohara H, Maeyama E, Kizawa Y, et al. Existential concerns of terminally ill cancer patients receiving specialized palliative care in Japan. Support Care Cancer. 2004 Feb;12(2):137-40. Epub 2003 Dec 18.
  8. Weisman AD, Worden JW. The existential plight in cancer: significance of the first 100 days. Int J Psychiatry Med. 1976-77;7(1):1-15. 
  9. Kissane DW. Psychospiritual and existential distress: The challenge for palliative care. Aust Fam Physician. 2000 Nov;29(11):1022-5.
  10. Bolmsjo I. Existential issues in palliative care: interviews of patients with amyotrophic lateral sclerosis. J Palliat Med. 2001 Winter;4(4):499-505. 
  11. Moadel A, Morgan C, Fatone A, Grennan J, Carter J, Laruffa G, et al. Seeking meaning and hope: self-reported spiritual and existential needs among an ethnically-diverse cancer patient population. Psychooncology. 1999 Sep-Oct;8(5):378-85.
  12. Hodges LJ, Humphris GM, Macfarlane G. A meta-analytic investigation of the relationship between the psychological distress of cancer patients and their carers. Soc Sci Med. 2005 Jan;60(1):1-12.
  13. Hagedoorn M, Sanderman R, Bolks HN, Tuinistra J, Coyne JC. Distress in couples coping with cancer: a meta-analysis and critical review of role and gender effects. Psychol Bull. 2008 Jan;134(1):1-30.
  14. Thorn H, Uhrenfeldt L. Experiences of non-specialist nurses caring for patients and their significant others undergoing transitions during palliative end-of-life cancer care: a systematic review. JBI Database System Rev Implement Rep. 2017 Jun;15(6):1711-1746. doi: 10.11124/JBISRIR-2016-003026.
  15. Vodermaier A, Linden W, Siu C. Screening for emotional distress in cancer patients: a systematic review of assessment instruments. J Natl Cancer Inst. 2009 Nov 4;101(21):1464-88. Epub 2009 Oct 13.
  16. Thekkumpurath P, Venkateswaran C, Kumar M, Bennett MI. Screening for psychological distress in palliative care: a systematic review. J Pain Symptom Manage. 2008 Nov;36(5):520-8. Epub 2008 May 20.
  17. Lam M, Lam HR, Agarwal A, Chow R, Chow S, Chow E, et al. Clinicians' views on palliative sedation for existential suffering: A systematic review and thematic synthesis of qualitative studies. J Pain Manage. 2017;10(1):31-40.
  18. Nyström M. A patient-oriented perspective in existential issues: a theoretical argument for applying Peplau's interpersonal relation model in healthcare science and practice. Scand J Caring Sci. 2007 Jun;21(2):282-8.
  19. Boston PH, Mount BM The caregiver’s perspective on existential and spiritual distress in palliative care. J Pain Symptom Manage. 2006 Jul;32(1):13-26.
  20. Landmark BT, Strandmark M, Wahl AK. Living with newly diagnosed breast cancer--the meaning of existential issues. A qualitative study of 10 women with newly diagnosed breast cancer, based on grounded theory. Cancer Nurs. 2001 Jun;24(3):220-6.
  21. Breitbart W, Gibson C, Poppito SR, Berg A. Psychotherapeutic interventions at the end of life; a focus on meaning and spirituality. Can J Psychiatry. 2004 Jun; 49(6):366-72. (96kb pdf)
  22. Albinsson L, Strang P. Existential concerns of families of late-stage dementia patients: questions of freedom, choices, isolation, death, and meaning. J Palliat Med. 2003 Apr;6(2):225-35.

Last updated 21 October 2019