EXISTENTIAL DISTRESS Paul Thielking 4/13/2018
Universal Cancer Related Disruptions 1 Cancer Related Disruptions Altered relationships Issues of dependence/independence Achievement of life goals Concerns about body-sexual image and integrity Existential issues
Adolescent and Young Adult Developmental Issues 1 Developmental Tasks of AYAs Establishing identity Developing positive body-image/sexual identity Separating from parents Involvement with peers/dating Future decisions: career, employment, family
Coping Styles of AYAs 2 Problem-focused strategies Planning Seeking practical support Emotion-focused strategies Acceptance Seeking emotional support Dysfunctional (Denial, Self-Blame, Venting) Associated with greater anxiety, depression Associated with worse quality of life
Coping Styles of AYAs 2 Acceptance coping (most frequent) Support-seeking (second most common) Practical and emotional support Associated with anxiety Proactive (3 rd most common) Active coping, planning, positive reframing Distancing Humor, religion, behavioral disengagement, practical support Negative Expression Denial, venting, self-blame Associated with grief Respite-seeking Substance use, self-distraction
Existential Distress/Suffering Definition 3,4 Incapacitating despair resulting from inner realization that life is futile and without meaning Lack of connectedness to that which is essential inside/outside or lack of ability to make meaning of our situation Disconnection from oneself, community, nature, higher being, etc. Serious illness often is catalyst for people to realize, acknowledge, engage or question existential or spiritual issues. Related Terms Demoralization Syndrome Total Pain
Existential Suffering (ES) vs Spiritual Suffering (SS) 4 Patients with ES might not be spiritual Spirituality has different meaning for different people SS as sub-type of ES Spiritual and Existential: share focus of meaning making and connectedness
Existential Domains 3,5 Mortality Anxiety about dying, separating from loved ones Freedom Regret about past choices, unresolved conflict with self/others Meaning Loss of purpose, questioning meaning of illness, suffering, or faith Isolation Feelings of abandonment, sense of disconnectedness
Risk Factors 3 Poor social support, single, unemployed Poorly controlled physical or psychological symptoms Self-blame coping factors for illness Low sense of controllability of illness Low level of physical activity
Diagnostic Challenges 3 Lack of universally accepted definition, clinician knowledge deficit, and concomitant physical, psychological, social and spiritual concerns make ES difficult to diagnose. Patients might be guarded, feel providers don t have time/interest Don t necessarily become clinically anxious or depressed. Suffering involves symptoms or process that threatens patient because of fear, meaning of symptoms, and concerns for the future. Fear and meaning is personal and individual.
Assessment 3 Listen for existential cues : expressions of doubt about meaning or faith, feelings of of isolation. Formal tools are narrowly focused or cumbersome.
Assessment 3,4 How are your spirits? Are you suffering? Are you at peace? What keeps you most from being at peace? What are you most frightened of? What is the worst thing about all of this? What gives you meaning and purpose? What do you value? How would you answer the question, Why am I here? Who am I? What do you think this illness is about? What worries you most about this illness? What are you most proud of? Regrets? Are there conversations you wish people were talking about, but are not? Are there things you feel like you still need to say to loved ones? (unfinished business) How do you want to be remembered by loved ones?
Bedside Interviews 6 Discern which existential postures most dominate the patient s experience of illness Then focus further questions and interventions toward those themes. Interviewing methods that aim to mobilize specific existential postures of resilience are built on the witnessing, validating, and normalizing of a patient s personal experience of illness.
Strengthening Resilience 6 Acknowledging Suffering Restoring Dignity Compassionate Witnessing Validating distress Normalizing as that of a normal person responding to difficult circumstances Empathic Dialogue
Treatment 4 Relationship with with patients and families can restore lost connections and reduce suffering. Creating space for exploration, permission to give voice to suffering. Reflective listening and willingness to journey with patients as they explore the meaning of their situation. Non-judgmental presence.
Structured Interventions 3 Meaning Centered Group Psychotherapy and Individual Meaning-Centered Therapy Founded on Viktor Frankl s teaching regarding human need for meaning. Helps patients find meaning with illness while exploring philosophical questions to life. Focus on living instead of dying Shown to benefit patients with cancer
Dignity Therapy 3 Brief form of individual therapy Guided interview to allow patients to reflect on past experiences that matter most to them and how they want to be remembered. Sessions audio-recorded, transcribed and shared. Shown to help patients and families
Supportive Expressive Group Therapy 3 Foundation in benefits of social support and use of coping skills. Decrease trauma of terminal illness visa normalization. Creates supportive environment for patients to adjust to illness while learning to live fully and authentically and improve quality of life. Found to be of benefit in breast cancer.
References 1. Handbook of Psychiatry in Palliative Medicine (Chochinov and Breitbart) 2. Griffith JL, Gaby L. Brief Psychotherapy at the Bedside. Countering Demoralization From Medical Illness. Psychosomatics 2005; 46:109-116 3. Zebrack BJ. Psychological, behavioral, and emotional issues for young adults with cancer. Cancer 2011;117(10 suppl):2289 94 4. Trevino KM et al. Coping and psychological distress in young adults with advanced cancer. J Supportive Oncol 2012;May-Jun;10(3):124-130. 5. Fast Facts #319 & 320 6. Evidence-Based Practice of Palliative Medicine. 2013