THE PAIN OF HIV: Mind, Body & Spirit 27 August 2003 The Very Rev. Drew A. Kovach, M.D., M.Div.,...

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

[email protected]

(808) 432-2383

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

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

HIV/AIDS• The most comprehensive chronic

disease

• Impacts all aspects of a person’s life– Social– Economic– Physical– Emotional– Spiritual

With an uncertain future…

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

Care Barriers

• Social Factors

• Cultural Factors

• Language Factors

• Religious Factors

• Economic Factors

• Physiological Factors

• Psychological Factors

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

Quality vs. Quantity of Life

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

The Pain of HIV

• World Pain of HIV

• Physical Pain of HIV

• Emotional Pain of HIV

• Spiritual Pain of HIV

WORLD PAIN OF HIV

ONE SMALL VIRUS...

ONE LARGE WORLD…

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

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

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

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

PHYSICAL PAIN OF HIV

Physical Pain of HIV

• Abdominal pain 25%

• Peripheral Neuropathy 25%

• Headache 25%– Tension 63%– Drug induced 20%– Migraine 17%

• Muscle and Joint pain 25%

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

EMOTIONAL PAIN OF HIV

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


• 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)


• Financial Issues (past, present, future)

• Job Issues– Feeling of self-worth, “pulling your own

weight”– Identity– Common ground with others. “What do

you do?”


• 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

Looking Good, Feeling BadThe disconnect…


• The “Follow-up” Burden– Frequent labs and other tests– Frequent office visits– Multiple sources of treatment and care– Refilling prescriptions


• 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


• No end to the therapy in sight

• The uncertain future– of successful therapy?– of long term side effects from the therapy?


• 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?

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.)

The Treatment of the Emotional Pain of HIV

• Treat or Refer; But Do Something!

• Anti-anxiety agents

• Antidepressants

• Psychotherapy– Individual– Group

The Treatment of the Emotional Pain of HIV

• Behavioral Therapies– Hypnosis– Biofeedback– Jacobson Progressive Relaxation– Cognitive Behavioral Management

SPIRITUAL PAIN OF HIV

What Is Spirituality?

It is NOT Religion!

Spirituality Explored…

• The Big Picture

• Meaning beyond matter

• What matters

• Serenity

• Inner self in continuity with known and unknown

• Forgiveness


• 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


• The answer to all questions

• Vulnerability

• Cumulative wisdom of energy and nature

• Vitality

• Personal in definition

• Justice

• That which gives life


• Meaning

• Water, warmth and light

• Grace

• The intersection of meaning and love

• Power

• Where we fit

• Purpose


• Who I am

• Why I am

• Unique

• Inherent

• The boundary surrounding the illusion of control

• Frightening


• Take a deep breath

• Inspiration

• Confidence in the inevitability of joy

• Filling

• Fulfilling

• Fullness of life

• Full of grace

WHAT THEN IS IT?

• It is core

• It is essence

• It is inspiration

• IT IS LIFE

Soul as in Sol.

Sol as in Sun.

Sun as in Light.

Spiritual Sources

• The patient

• The provider

• The partner/spouse

• The family

• The community of faith

• The cosmos

• The God of Creation

Spiritual Pain of HIV

• Purpose of life

• Beyond ourselves

• “Hole” in the heart

• Guilt and Judgment

• “Redemptive suffering”

• Relationships with people and with God

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”)

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

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

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

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.


• 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.


• 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.


• 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.


• 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.

All Pain Of HIV Has To Be Managed

• Spiritual

• Emotional

• Physical

–Making people whole requires a holistic approach

The Parable of the

Stonecutters

The power of meaning

to transform the experience

of life

What is it like to live with AIDS?

In their words…

David TaylorSherman Oaks, California

Tom ConnorSanta Fe, New Mexico

Linda JordanWest Hartford, Connecticut

Joel Arce, Luis Arce, Angel Glover, Steve Koceja and

Noel ArceNew York, New York

Diana HindrewDenver, Colorado

Mike Carver Honolulu, Hawaii

All God’s Blessings

Thank you

THE PAIN OF HIV: Mind, Body & Spirit 27 August 2003 The Very Rev. Drew A. Kovach, M.D., M.Div.,...

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