Overview

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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 [1] and threats to self identity. [2] 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” [3]

What is known

• Empirical studies have named a number of experiences that can be described as patient existential plight or distress. [4-8]
• There is significant relationship between cancer patient’s distress and the distress of his or her carer - they experience similar levels of distress.[9-10]
• Women report more distress than men regardless of whether they are carers or patients [10]

What it means for practice
The multidisciplinary team needs to explore within its own organisation the best way to address patients’ existential needs. [11-12] Recent research identifying stress in teams related to existential issues confirms that individual, group, institutional and cultural forces influence individual experience. [12-15]

Active research areas / controversies

• The concepts of existential distress and existential loneliness need clarity and agreed definition. [16]
• How health care professionals can best support existential well being is not known. [2]
• The effects of existential distress on physical symptoms are not known. [2]
• Screening of distress is still under development and recommendation of which tool to use depends on context of use. 17-18]
• Lack of empirical attention to ideas around existential loneliness and psychosocial and spiritual interventions has been suggested as a contributing factor to the unfounded use of deep continuous sedation and even euthanasia. [3]

Finding out more

1. 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.
2. 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.
3. Spiritual and Existential Distress. In: Doyle D, Woodruff R, editors. The IAHPC Manual of Palliative Care. 2nd ed. Houston: IAHPC Press; 2008. 

Related CareSearch Pages
Suffering
Dignity conserving care

References

1. Chochinov HM, Krisjanson LJ, Hack TF, Hassard T, McClement S, Harlos M. Dignity in the terminally ill: revisited. J Palliat Med 2006;9:666–672.
2. 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.
3. Ettema E, Derksen L, van Leeuwen E, Existential loneliness and end-of-life care: A systematic review, Theoretical Medicine and Bioethics, 2010, 31: 141-169.  DOI 10.1007/s11017-010-9141-1
4. 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. Supportive Care in Cancer. 2004 Feb;12(2):137-40.  
5. Weisman AD, Worden JW. The existential plight in cancer: significance of the first 100 days. International Journal of Psychiatry in Medicine 1976-77;7(1):1-15.  
6. Kissane DW. Psychospiritual and existential distress: the challenge for palliative care. Australian Family Physician 2000 Nov;29(11):1022-5.
7. Bolmsjo I. Existential issues in palliative care: interviews of patients with amyotrophic lateral sclerosis. Journal of  Palliative Medicine 2001 Winter;4(4):499-505.  
8. 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.
9. 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
10. 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.  Psychological Bulletin.  2008 Jan;134(1):1-30. European Journal of Cancer Care (Engl). 2008 Jan;17(1):42-8  
11. Nyström M. A patient-oriented perspective in existential issues: a theoretical argument for applying Peplau's interpersonal relation model in healthcare science and practice. Scandinavian Journal of Caring Sciences 2007 Jun;21(2):282-8. 
12. Boston PH, Mount BM The caregiver’s perspective on existential and spiritual distress in palliative care. Journal of Pain and Symptom Management 2006 32(1): 13-26
13. 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
14. Breitbart W, Gibson C, Poppito SR, Berg A Psychotherapeutic interventions at the end of life; a focus on meaning and spirituality Canadian Journal of  Psychiatry. 2004 Jun; 49(6):366-72
15. Albinsson L, Strang P Existential concerns of families of late-stage dementia patients: questions of freedom, choices, isolation, death, and meaning. Journal of Palliative Medicine. 2003 Apr;6(2):225-35
16. LeMay K, Wilson KG. Treatment of existential distress in life threatening illness: a review of manualized interventions. Clinical Psychology Review.  2008 Mar;28(3):472-93.
17. 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.
18. Thekkumpurath P, Venkateswaran C, Kumar M, Bennett MI. Screening for psychological distress in palliative care: a systematic review. Journal of Pain and Symptom Management.  2008 Nov;36(5):520-528)

 This page was created on 14 May 2008
Last updated 25 October 2010