Introduction

Existential distress is a manifestation of identity crisis manifesting as meaninglessness, hopelessness, and fear of death. It may be defined as the psychological turmoil individuals may experience in the face of imminent death, which threaten individuals on a physical, personal, relational, spiritual, or religious level. Existential distress is well-documented among patients at end-of-life and increasingly recognized among informal caregivers as well.  It has been shown to lead to increased levels of depression, hopelessness, and desire for hastened death in them. Every health-care professional (HCP) will vouch for the fact that patients and care-givers facing an existential crisis are most difficult to manage. For HCPs working in settings characterized by frequent death often leads to anxiety, avoidance, and disengagement and may push them towards burnout (as a matter of fact existential distress faced by self as a consequence of involvement with patients at end-of-life has been implicated as a key contributor to burnout) may inhibit their ability to competently perform job-related responsibilities, contributing to feelings of demoralization, negative attitudes towards the patients, and low achievement of therapeutic goals. The obvious question is what is the best way to handle patients / care-givers facing end-of-life (EOL) so that HCPs can avoid self existential distress.  

Contemplation of existential themes

Understanding the specific existential challenges and themes of this crisis goes a long way in developing a response strategy.  Persisting themes involve concerns regarding identity, guilt, and responsibility to care for the self.  Commonly death anxiety coexists alongside other existential concerns.

1. Identity crisis / ontological crisis / death anxiety

The most common psychological construct faced by patients / care-givers facing EOL is death anxiety, generally characterized as any detrimental emotions experienced due to the anticipation of being in a state in which the self does not yet exist. Lack of preparedness for death, feelings of helplessness, and depersonalization contributes to highly aggressive behavior by patient / care-giver.

2. Feeling of guilt

Feeling of guilt is common in care-givers especially if they are close to the patient. On the other hand the dying patient may harbor guilt that he / she did not do enough for the family or spend enough time with family. This may turn a person “paranoid” and excessively sensitive to even innocuous comments.

3. Responsibility to care for self / other

Fear of dependence, physical degradation, and not having time for family and meaningful activities may lead to developing “avoidance” as a coping strategy. 

 

Approach to deal with existential distress

The approach involves identifying the exact existential theme;

1. Death anxiety

Interventions that foster “meaning-making” as well as emotion-focused and problem-focused coping may be beneficial. The key to meaning making intervention is reflection, clarification, and exploration; all of which requires giving some time to the patient.

Reflection

•       Patients may be motivated to reflect on themes related to identity, legacy, hope, finiteness and limitations of life

•       Attempt must be made to develop an understanding of one's legacy through exploration of three temporal legacy modes: the legacy that's been given from the past, the legacy that one lives in the present; and finally, the legacy one will leave in the future

•       Keeping a gratitude journal

Clarification

•       Developing an understanding of the significance of “creativity” and “responsibility” as important source of meaning in life

•       Fostering an understanding of the significance of connecting with life through experiential sources of meaning; through experiencing love, beauty, and humor

•       Adjusting viewpoint i.e. clarify mindset and the lens through which any experience is felt

•       Connecting with people

Exploration

•       Emphasis must be made on freedom and capacity to choose our attitude toward suffering and life's limitations and to derive meaning from that choice

•       There should be a discussion of hopes for the future, and the transition from being in the therapy to enacting the lessons learned in daily life as the therapy comes to an end

•       Practicing mindfulness

•       Redirecting energy

Patients / care-givers may be assigned related readings, movies and even homework exercises.

 

2. Removing guilt

Care-giving can be relentless, exhausting and overwhelming and care-givers often feel that they are alone and that they are somehow responsible for the current bad situation of the patient. Several approaches may be undertaken to reduce their anxiety and guilt.

•       Make them understand that care-giving is a team-work in which the care –giver is being teamed up with a group of health-care professionals.

•       Managing disease is really navigating the unknown. There is never one 'right' answer to anything

•       Care-giving is mental closeness with patient, take the focus off mere physical care

•       Help the caregiver “Step Away” and find humor

•       Encourage care-giver at each positive development

•       Don’t forever dwell in past

 

 

3. Self care

The need for self-care is critical for the sick or the care-giver. This may involve undertaking appropriate regular exercise, seeking support from relatives / colleagues, taking time off from care-giving, or engaging in formal structured activities or hobbies.  

Prof (Dr.) Sundeep Mishra

Department of Cardiology, AIIMS New Delhi