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
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
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?)
The Four Basic Human Existential Concerns
1. Death – The Inevitability of Death
death anxiety, the limitations of life
2. Freedom – The Freedom to Make our Lives as We Will
groundlessness, responsibility, will, existential guilt
3. Isolation – Our Ultimate Aloneness
we are born & die alone, transcendence, love
4. Meaninglessness – Absence of Obvious Meaning to Life
search for meaning, uncertainty, values,
Irvin Yalom, Existential Psychotherapy, New York: Basic Books, 1980
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
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
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
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
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
RESPONSIBILITY: To Create a Life of Meaning;
To be the Author of Your Life Story
The “Arc” of One’s Life Story
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
VULNERABILITY / EXISTENTIAL GUILT
LIMITATIONS
VULNERABILITY
EXISTENTIAL GUILT
CONNECT-TRANSCEND
WHOLEHEARTEDNESS
COURAGE, WILL
COMPASSION
TRANSCENDENCE
CONNECTEDNESS
TRANSFORMATION
FREEDOM
JOY, BEAUTY, HOPE
UNCERTAINTY
ATTITUDE
CHOICE
DISCONNECTION
EXISTENTIAL
ISOLATION
SHAME, SUFFERING
DEMORALIZATION
DEPRESSION
ANGER, BLAME,
JUDGMENT,
NUMBNESS, DENIAL
HOPELESSNESS
DISCONNECTION
CERTAINTY
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
Acceptance of Death:
Kubler-Ross Stages of Dying
Kubler-Ross, 1969
Denial
Anger
Bargaining
Depression
Acceptance
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.”
Acceptance of Death:
A Complex & Dynamic Construct
Awareness
Cognitive
Acknowledgment
Emotional
Insight
Behavioral
(Speech; Actions)
Acceptance
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
Empirical evidence suggests that
cognitive and emotional acceptance
of death leads to more desirable
outcomes in terminally ill patients.
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
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
Insight in the Terminally Ill
% Depressed
35
30
25
20
15
10
5
0
No Insight
Partial
Complete
2 (2)=7.09
p=0.02
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
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
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
Importance of Life Completion
• 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
Steinhauser et al, in press
• 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
Novel Existential and Narrative Therapies to Enhance
the Quality of Life of Advanced Cancer Patients
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•
•
•
•
•
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
Cancer and Meaning
Enhance
Meaning
Cancer
Suffering
Limitations
Identity
Death
Guilt
Maintain
Meaning
Loss of
Meaning
Meaning Centered Psychotherapy
Basic 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.
Meaning Centered Psychotherapy
Basic Concepts
•
1.
2.
3.
4.
The Sources of Meaning: Achieving
Transcendence
Creativity - work, deeds, causes
Experience - nature, art, relationships
Attitude - the attitude one takes towards
suffering and existential problems
Legacy- individual, family, community history
Meaning-Centered Psychotherapy
Session 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
Meaning Centered Psychotherapy
in 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
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