Existential Intervention Research in End of Life Care

1. Hospice and Palliative Care: 2012 Update for the Specialist Team Existential Intervention Research in End of Life Care William Breitbart, M.D. Chief, Psychiatry Service Chairman, Department of Psychiatry Memorial Sloan Kettering Cancer Center New York, New York, USA

2. Goals of Palliative Care: Beyond Symptom Control Concepts of adequate palliative care must be expanded in their focus beyond pain and physical symptom control to include psychiatric, psychosocial, existential and spiritual domains of care; culminating in a peaceful acceptance of death

3. The 3 Fundamental Existential Questions Confronting Human Beings Where did I come from? Why am I here? Where am I going? (i.e. what lies beyond death?)

4. The Four Basic Human Existential Concerns • Death – The Inevitability of Death death anxiety, the limitations of life • Freedom – The Freedom to Make our Lives as We Will groundlessness, responsibility, will, existential guilt • Isolation – Our Ultimate Aloneness we are born & die alone, transcendence, love • Meaninglessness – Absence of Obvious Meaning to Life search for meaning, uncertainty, values, Irvin Yalom, Existential Psychotherapy, New York: Basic Books, 1980

5. Existentialism: Confronting Mortality “One can no more look steadily at death than at the sun” La Rouchefoucauld, 17th Century Writer “I intend to achieve immortality….by living forever” Woody Allen, 20th Century Writer and Filmmaker “When you look at death, it reminds you of your responsibility to live, and guides your path. Death exists to teach us how precious life is. It forces us to strive towards authenticity in every moment and act of our lives” Wm Breitbart M.D. Child of Holocaust Survivors

6. The Unique Nature of Human Existence Human Beings are Uniquely Aware of our Existence Meaning –Making is the Defining Characteristic of Human Beings as a Species Connection / Connectedness is Essential to Survival of the Human Species., and the Essence of the Human Experience The Capacity for Transformation is Unique to Human Beings

7. Human Beings are Uniquely Aware of our Existence • Human Being are unique in that we are aware of our existence. Kierkegaard postulated that as a result of this we experience both “Awe” and “Dread”. It is awesome to be alive. Yet it is dreadful to recognize that we all die, and that death can come at any moment. Death Anxiety, (the struggle of the living against non-being), or Existential Terror. • Ernest Becker hypothesized that in order to mitigate against death anxiety, human beings create “Culture”- humanly constructed beliefs about reality that reduce death anxiety • All “Cultures” elucidate the origins of the universe, prescribe appropriate behaviors, values ,virtues, and offer literal or symbolic paths to immortality. Humans thus manage existential terror by believing that life is meaningful, and from the self-esteem obtained by meeting or exceeding cultural values Becker, 1973; Pyszczunski, Greenberg, Solomon, 1999

8. Meaning –Making is the Defining Characteristic of Human Beings as a Species • Meaning-Making is the defining characteristic of human beings as a species. Frankl proposed that the need to find or create meaning in life was a basic motivating force of human behavior. • Meaning is derived from specific sources: Connecting to Life through Love, Engaging in Life through Work, and our Attitude towards Suffering • Sartre &Camus believed that the world was devoid of externally given meaning; human beings must create their own meaning . • Frankl and others believed in the possibility of an “Ultimate Meaning” ; a meaning pre-determined by a creator, that human beings much search for and hopefully find and fulfill. • Frankl, 1969; Sartre, 1984

9. Responsibility, Existential Guilt, Vulnerability • Responsibility is our ability to respond to the fact of our existence • Responsibility to Create a Life of meaning, identity, direction, connection, self-actualization; a valued member of a culture in a world with meaning. We must live a life unique to us , to its full potential • This requires Will- (fueled love, hope, meaning , the drive towards freedom, and courage). Courage involves commitment to meaning, to life, to hope, to freedom. to deal with anxiety (control what we can and have faith) • We all fail at this impossible task, and thus we all experience existential guilt, angst, vulnerability. • The task of facing death is to relieve existential guilt, forgive and accept yourself, restore or sustain meaning

10. RESPONSIBILITY: To Create a Life of Meaning; To be the Author of Your Life StoryThe “Arc” of One’s Life Story

11. Transformation • Periods of Transition • Moving into a New Phase of Life • Changing as a Person in ways that are Significant and Difficult • To assimilate, accept, accommodate to events and information • To Modify or Take Up a new Role, Identity

12. VULNERABILITY / EXISTENTIAL GUILT LIMITATIONS VULNERABILITY EXISTENTIAL GUILT DISCONNECTION EXISTENTIAL ISOLATION ATTITUDE CHOICE CONNECT-TRANSCEND WHOLEHEARTEDNESS COURAGE, WILL COMPASSION TRANSCENDENCE CONNECTEDNESS TRANSFORMATION FREEDOM JOY, BEAUTY, HOPE UNCERTAINTY SHAME, SUFFERING DEMORALIZATION DEPRESSION ANGER, BLAME, JUDGMENT, NUMBNESS, DENIAL HOPELESSNESS DISCONNECTION CERTAINTY MEANING

13. Connection- Transcendence- • Connection is the Essence of Human Experience • Connection is our ability to Love • Connection is our ability to forge meaningful, authentic relationships with other people • Transcendence is Connection and Love and our ability to rise above our own individual concerns and to connect to others; to connect to something greater than ourselves. Transcendence leads to Freedom. • Dedicating yourself to someone or something • The greatest gift is to love someone and be loved in return , authentically, with all your vulnerabilities seen

14. Acceptance of Death:Kubler-Ross Stages of Dying Kubler-Ross, 1969 Denial Anger Bargaining Depression Acceptance

15. Acceptance of Death:Kubler-Ross’ Definition Kubler-Ross, 1969 Acceptance – coming to terms with the situation without feelings of hostility; allows time for facing the reality of death in a constructive way “It’s going to be okay.” “I’m ready, I don’t want to struggle anymore.”

16. Acceptance of Death: A Complex & Dynamic Construct Awareness Cognitive Acknowledgment Emotional Insight Behavioral (Speech; Actions) Acceptance

17. Acceptance of Death:Peaceful Awareness of Terminal Prognosis • Cognitive acceptance: intellectual awareness of one’s terminal prognosis • Emotional acceptance: peace and equanimity (i.e., absence of hostility) in facing death Ray et al, J Pall Med 2006

18. Empirical evidence suggests that cognitive and emotional acceptance of death leads to more desirable outcomes in terminally ill patients.

19. Positive Outcomes Associated with Acceptance of Death (Peaceful Awareness) • Higher rates of advanced care planning • Better quality of death • More positive physical & mental health outcomes for bereaved family members Ray et al, J Pall Med 2006

20. Insight into Illness • What do you understand about your illness? • How serious do you believe things are? • 0… No information • 1….No insight: believes illness is curable; denies of terminal condition • 2….Limited insight; understands that illness is terminal, unrealistic time expectations • 3….Good insight; has full understanding of gravity of illness and imminence of death

21. Insight in the Terminally Ill% Depressed 2 (2)=7.09 p=0.02 % Patients

22. Prognostic Non-acceptance- The Canadian National Palliative Care Survey • A Canadian multicenter prospective survey of 381 advanced cancer patients with prognosis of 6 months or less receiving palliative care • Patients were rated on a 0-6 scale of difficulty in Acceptance of their terminal prognosis,. Those scoring 3 or greater (moderate) were classified as Non-acceptors. • Non-acceptors were more likely to have a diagnosis of a depressive or anxiety disorder, and reported significantly more hopelessness, and more suffering , • Non-acceptors were younger, had more financial concerns, and smaller social connections Thompson, et al, JCO 2009

23. What Should Be the Goals of Psychotherapy Interventions in Palliative Care ? • Presence and Non-abandonment: To escort the patient through the course of treatment and the dying process? • Support: To provide support, ally with defenses including use of denial of proximity death? • To Accomplish Something More “Ambitious”? • Acceptance of a life lived, sense of life completion, meaning, coherence, legacy, Relieving Existential Guilt, Self-Forgiveness, Acceptance of death

24. Existentially-informed EOL Goals: Growth in the Dying Process • Sense of life completion • Sense of coherent meaning about one’s life • Leaving legacy • Acceptance of a life lived • Relieving Existential Guilt- Forgiveness • Facing death with peace and equanimity • Acceptance of Death

25. Be free of pain Be free of shortness of breath Be kept clean Name someone to make decisions Treatment preferences in writing Know what to expect about one’s physical condition Feel family is prepared for one’s death Have a doctor who knows one as a whole person Have a doctor with whom one can discuss personal fears Say good-bye to important people Resolve unfinished business with family or friends Share time with friends and family Remember personal accomplishments Importance of Life Completion Steinhauser et al, in press

26. Novel Existential and Narrative Therapies to Enhance the Quality of Life of Advanced Cancer Patients • Meaning-Centered Psychotherapies • Dignity Therapy • CALM Therapy • MaP Therapy • End of Life Narrative Therapy • Cognitive Existential Psychotherapy Breitbart et al 2010, 2012;Chochinov et al, 2011;; Rodin et al 2012 Lethborg et al, 2012; Steinhauser et al 2011; Kissane et al 2008

27. Cancer and Meaning Enhance Meaning Suffering Limitations Identity Death Guilt Maintain Meaning Cancer Loss of Meaning

28. Meaning Centered PsychotherapyBasic Concepts • Meaning: 1. Meaning of Life - Life has meaning and never ceases to have meaning. 2. Will to Meaning - The desire to find meaning in human existence is a third primary and basic motivation for human behavior; (i.e. libido, will to power, will to meaning). 3. Freedom of Will - Freedom to find meaning in existence and to choose one’s attitude towards suffering.

29. Meaning Centered Psychotherapy Basic Concepts • The Sources of Meaning: Achieving Transcendence 1. Creativity - work, deeds, causes 2.Experience - nature, art, relationships • Attitude - the attitude one takes towards suffering and existential problems • Legacy- individual, family, community history

30. Meaning-Centered PsychotherapySession Topics & Themes Session #1: Concepts & Sources of Meaning * Introductions to Intervention & Meaning Session #2: Cancer & Meaning * Identity – Before & After Cancer Diagnosis Session #3: Historical Sources of Meaning * Life as a Living Legacy (past-present-future) Session #4: Attitudinal Sources of Meaning * Encountering Life’s Limitations Session #5: Creative Sources of Meaning* Actively Engaging in Life (via: creativity & responsibility) Session #6: Experiential Sources of Meaning * Connecting with Life (via: love, beauty & humor) Session #7: Transitions * Reflections & hopes for future

31. Meaning Centered Psychotherapyin Advanced Cancer Meaning-Centered Psychotherapy, in Group and Individual Formats, has been demonstrated, in Randomized Controlled Trials to: • Enhance Spiritual Well Being, Meaning, Faith, Quality of Life • Decrease Hopelessness, Desire for Hastened Death, Symptom Distress Breitbart et al, Psycho-oncology 2010, Breitbart, et al 2002,2004,2006; Breitbart et al JCO 30: 1304-1309, 2012

32. Existential Pearls of Wisdom Love Connects us to each other Hope Connects us to Life Hope is the Possibility of Meaning Meaning is the experience of being in love with Being; The experience of Love, Connection, Beauty, Joy, Life in all its duality. Meaning is the experience of Freedom. Acceptance of Death is the Acceptance of a Life Lived