the pain of hiv: mind, body & spirit 27 august 2003 the very rev. drew a. kovach, m.d., m.div.,...
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THE PAIN OF HIV:Mind, Body & Spirit
27 August 2003
The Very Rev. Drew A. Kovach, M.D., M.Div.,
Director of HIV Services,
Kaiser Permanente Hawaii
(808) 432-2383
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WHO I AM & WHAT I DO• 30 years a Family Practice Physician
– Medical School Faculty and Residency Director
– Solo Private practice; primarily gay and lesbian medicine and HIV
– FP in a multi-specialty group specializing in HIV medicine
• 27 years an ordained priest
• A man taking care of people living with HIV for over 20 years with a multi-level view of health, wholeness and wellness
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CONCEPTS OF WHOLENESS &
WELLNESS – MY BIAS• Whole people
– Body– Mind– Spirit
• Whole lives• Levels of Healing• Life being livable not just being alive• A good life
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HIV/AIDS• The most comprehensive chronic
disease
• Impacts all aspects of a person’s life– Social– Economic– Physical– Emotional– Spiritual
With an uncertain future…
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Holistic Approach
• Mind, Body, Spirit – The “trinity” of man
• 3 Spheres
• Dis-ease, distress or pain in any one affects the other two
• Managing whole people to make people whole
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Care Barriers
• Social Factors
• Cultural Factors
• Language Factors
• Religious Factors
• Economic Factors
• Physiological Factors
• Psychological Factors
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Treat the Whole Person
• Not just treating numbers or lab values
• Not just treating with pills
• Not just treating only the symptoms
• Not just treating stereotypes
• Not just treating to make ourselves feel better
• Not just treating the mind and the body
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Quality vs. Quantity of Life
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Access the Patient and Ourselves
• Meeting people “on the road” where they are, not where we think they should be
• Admit our own bias and prejudice and frustration
• Admit that how we feel will affect how we treat
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The Pain of HIV
• World Pain of HIV
• Physical Pain of HIV
• Emotional Pain of HIV
• Spiritual Pain of HIV
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WORLD PAIN OF HIV
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ONE SMALL VIRUS...
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ONE LARGE WORLD…
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Adults and children Adults and children estimated to be living estimated to be living
with HIV/AIDS as of end 2002with HIV/AIDS as of end 2002
Total: 42 million
Western Europe
570 000570 000North Africa & Middle East
550 000550 000Sub-Saharan
Africa
29.4 29.4 millionmillion
Eastern Europe & Central Asia
1.2 million1.2 million
South & South-East Asia
6 million6 million
Australia & New Zealand
15 00015 000
North America
980 000980 000Caribbean
440 000440 000
Latin America
1.5 1.5 millionmillion
East Asia & Pacific
1.2 million1.2 million
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WORLD STATISTICS
• 42 million people are infected
• 29.4 million are in Sub-Saharan Africa
• 3.1 million people have died from HIV/AIDS in 2002
• 95% from developing countries
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AFRICA STATISTICS
• Twice the number of people killed on 9-11 die in Africa daily from AIDS
• At present: In Botswana 1 in 3 are HIV positive and 42% of pregnant women are HIV positive
• Women make up 55% of those infected in Sub-Saharan Africa
• The probability of death by 15 years is over 50% in South Africa
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USA ESTIMATES OF HIV INFECTED PERSONS
• USA: 850,000 to 950,000 persons infected
• 180,000 to 280,000 undiagnosed
• 230,000 not under care
• 50,000 new cases this year
• 17,200 deaths this year
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PHYSICAL PAIN OF HIV
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Physical Pain of HIV
• Abdominal pain 25%
• Peripheral Neuropathy 25%
• Headache 25%– Tension 63%– Drug induced 20%– Migraine 17%
• Muscle and Joint pain 25%
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Physical Pain of HIV• Nociceptive Pain
– signals tissue injury (trauma, thermal, mechanical or chemical) through nerves and central pathways that are otherwise normal
• Neuropathic Pain– arises because of dysfunction in peripheral
nerves or the central nervous system
• Idiopathic Pain– occurs without, or out of proportion to,
known organic pathology
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EMOTIONAL PAIN OF HIV
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Emotional Pain of HIV
• “Heart ache” vs. Chest Pain
• “Who is on your back” vs. Back Pain
• “Worn out” vs. Fatigue
• Relationship– With yourself– With others– With God
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Emotional Pain of HIV
• Partner Issues (past, present, future)– One partner positive, the other negative– Both positive– No partner
• Parents and Family Issues (past, present, future)
• Friends and co-worker Issues (past, present, future)
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Emotional Pain of HIV
• Financial Issues (past, present, future)
• Job Issues– Feeling of self-worth, “pulling your own
weight”– Identity– Common ground with others. “What do
you do?”
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Emotional Pain of HIV
• Living with a chronic potentially fatal disease, in otherwise young healthy people, with an uncertain future
• “Pill Burden”– Number (PI vs. NNRTI regimens)– Timing (complex regimens) – Constant reminder
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Looking Good, Feeling BadThe disconnect…
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Emotional Pain of HIV
• The “Follow-up” Burden– Frequent labs and other tests– Frequent office visits– Multiple sources of treatment and care– Refilling prescriptions
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Emotional Pain of HIV
• The Burden of not feeling “normal” – Effects of the disease– Effects of the treatments– We ask our patients to “get used to” not
feeling well and to tolerate “side effects”
• The Burden of not looking “normal”– Lipodystrophy and wasting syndrome
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Emotional Pain of HIV
• No end to the therapy in sight
• The uncertain future– of successful therapy?– of long term side effects from the therapy?
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Emotional Pain of HIV
• HIV vs. Cancer Model– Cyclic vs. Continuous chemotherapy– How long will the remission last?– What do I do if and when “it comes back?”– Do I even want to treat it?– Will you help me with the pain?
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The Result of Emotional Pain of HIV
• ANXIETY and DEPRESSION– “The Twins” Never separate– All individual with HIV will become
clinically depressed; early, middle or late but it will come!
– Patient & doctor need to recognize it– Tools: Anxiety and depression
inventories (Beck, Hamilton etc.)
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The Treatment of the Emotional Pain of HIV
• Treat or Refer; But Do Something!
• Anti-anxiety agents
• Antidepressants
• Psychotherapy– Individual– Group
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The Treatment of the Emotional Pain of HIV
• Behavioral Therapies– Hypnosis– Biofeedback– Jacobson Progressive Relaxation– Cognitive Behavioral Management
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SPIRITUAL PAIN OF HIV
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What Is Spirituality?
It is NOT Religion!
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Spirituality Explored…
• The Big Picture
• Meaning beyond matter
• What matters
• Serenity
• Inner self in continuity with known and unknown
• Forgiveness
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Spirituality Explored…
• Intimacy with God, Allah, Yahweh, The Source, The Creator, The Buddha, The Christ, The Higher Power, The Absolute, The Life Force
• Faith• The inter-connectedness of existence• Humility• Something beyond ourselves
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Spirituality Explored…
• The answer to all questions
• Vulnerability
• Cumulative wisdom of energy and nature
• Vitality
• Personal in definition
• Justice
• That which gives life
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Spirituality Explored…
• Meaning
• Water, warmth and light
• Grace
• The intersection of meaning and love
• Power
• Where we fit
• Purpose
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Spirituality Explored…
• Who I am
• Why I am
• Unique
• Inherent
• The boundary surrounding the illusion of control
• Frightening
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Spirituality Explored…
• Take a deep breath
• Inspiration
• Confidence in the inevitability of joy
• Filling
• Fulfilling
• Fullness of life
• Full of grace
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WHAT THEN IS IT?
• It is core
• It is essence
• It is inspiration
• IT IS LIFE
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Soul as in Sol.
Sol as in Sun.
Sun as in Light.
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Spiritual Sources
• The patient
• The provider
• The partner/spouse
• The family
• The community of faith
• The cosmos
• The God of Creation
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Spiritual Pain of HIV
• Purpose of life
• Beyond ourselves
• “Hole” in the heart
• Guilt and Judgment
• “Redemptive suffering”
• Relationships with people and with God
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Spiritual Pain of HIV
• Guilt about lifestyle choices
• “Judgmental” churches
• No support for gay, lesbian, bisexual, & transgender people
• No support of same sex relationships
• Guilt and judgment about having HIV (“Gay Plague”)
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The Result of Spiritual Pain of HIV
• Feeling abandoned by God
• Feeling a sense of condemnation
• Feeling alienated from “religious people”
• Feeling helpless and hopeless
• Feeling worthless
• Feeling bad
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Treatment of Spiritual Pain of HIV
• Treat or Refer; But Do Something!• Acknowledge the pain is real• Pastoral care to find Spiritual peace• Tolerant, inclusive congregations• The Sacraments (Religious “Actions”)
– Communion, The Mass, Divine Liturgy– Confession and forgiveness – Anointing with prayers for healing
• Prayer and meditation
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Treatment of Spiritual Pain of HIV
• Inspirational books and articles
• Inspirational writings by people living with HIV
• Websites
• Spiritual support groups
• My Prescription for Spiritual Wellness
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Prescription for Spiritual Wellness
• Meaning in life involves finding the greatnessgreatness hidden inside of us.
• Purpose in life is determined by how we use this greatnessgreatness.
• Faith is to believe that greatnessgreatness can be embedded within the frailty of our own fallibility.
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Prescription for Spiritual Wellness
• Serenity involves using our goodness to pursue meaning until moments of greatnessgreatness reveal themselves to us.
• Courage is to recognize moments of greatnessgreatness when they occur, despite personal cost.
• Dissonance lingers in the state of unvisited expectations of greatnessgreatness.
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Prescription for Spiritual Wellness
• Grace is to understand that our greatnessgreatness does not belong to us, simply because it is inside of us.
• Perspective is gained with understanding that greatnessgreatness does not extinguish or diminish with passing of time or opportunity.
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Prescription for Spiritual Wellness
• Wisdom is approached when we understand that we do not have the latitude to choose which greatnessgreatness is ours or how large our greatnessgreatness is.
• Simplicity involves not trying to make someone else’s greatnessgreatness our own.
• Power in life is revealed when we recognize greatnessgreatness hidden inside of every being.
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Prescription for Spiritual Wellness
• Joy resides in appreciation of the greatnessgreatness of others.
• Love is discovered when we help another find their greatnessgreatness and to accept their help in finding ours.
• Peace in life occurs when we recognize that regardless of whether we discover our greatnessgreatness we are still loved by our God.
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All Pain Of HIV Has To Be Managed
• Spiritual
• Emotional
• Physical
–Making people whole requires a holistic approach
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The Parable of the
Stonecutters
The power of meaning
to transform the experience
of life
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What is it like to live with AIDS?
In their words…
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David TaylorSherman Oaks, California
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Tom ConnorSanta Fe, New Mexico
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Linda JordanWest Hartford, Connecticut
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Joel Arce, Luis Arce, Angel Glover, Steve Koceja and
Noel ArceNew York, New York
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Diana HindrewDenver, Colorado
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Mike Carver Honolulu, Hawaii
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All God’s Blessings
Thank you