What does this have to do with a life-threatening illness?
The word ‘existential’ describes experiences related to existence and experience; with emphasis on human existence and human dealing with experience and existence. From a philosophical stance it describes those elements that exist and are identified as known by an experience rather than that known by reason.
Existential Distress or suffering at the end of life has been defined as hopelessness, futility, burden to others, loss of sense of dignity, profound loneliness, intolerable emptiness, remorse, sadness, loss of meaning, desire for death or loss of will to live and threats to self-identity. It is not relieved by the treatment of physical symptoms, and can occur in the absence of such symptoms.
The importance of the patients’ existential concerns in end of life care was described by Cicely Saunders in the 1960s when she introduced the term total pain, including the physical, psychological, social, and spiritual dimension. Existential needs are linked to the wish to maintain a meaning in life, to infuse life with freedom and relations as well as sustain purpose and hope.
Kissane et. al. identifies four key domains to guide an understanding of existential concerns for people with a life–threatening illness. These are:
- The self (suffering must be seen within the context of the person’s whole life);
- Free choice (taking responsibility for the manner in which we live);
- Meaning (having a sense of accomplishment ) and
- Anxiety (the impermanence of life emergences as fear and dread when illness threatens life and is sometimes referred to as ‘death anxiety’).
By focusing on the unachievable long term goals, people with life-threatening illness face feelings of futility and distress. Cherny (2009) states that a reestablishment of purpose can be facilitated by the “identification of unfulfilled aspirations, incomplete tasks, and unresolved issues that the patient can productively pursue.” He continues, ”… remorse can provide the motivation for achievable constructive pursuit.” It is important that non-redeemable issues are identified so that they do not distract from the more achievable and thus maximize productive use of time and energy. Patients can be helped “…acknowledge that there are meaningful and fulfilling tasks to be done, joys to be shared, things to be said or completed, relationships to be savoured, and animosities to be resolved.” (Cherney, N. in Psychiatry in Palliative Medicine Ed Chochinov & Breitbart 2009 p300-323)
You can read more on Existential Distress in this month’s Newsletter.