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THE PAIN OF HIV: Mind, Body & Spirit 27 August 2003

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 dkovach@hawaii.rr.com (808) 432-2383. WHO I AM & WHAT I DO. 30 years a Family Practice Physician Medical School Faculty and Residency Director

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THE PAIN OF HIV: Mind, Body & Spirit 27 August 2003

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  1. THE PAIN OF HIV:Mind, Body & Spirit27 August 2003 The Very Rev. Drew A. Kovach, M.D., M.Div., Director of HIV Services, Kaiser Permanente Hawaii dkovach@hawaii.rr.com (808) 432-2383

  2. 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

  3. 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

  4. HIV/AIDS • The most comprehensive chronic disease • Impacts all aspects of a person’s life • Social • Economic • Physical • Emotional • Spiritual With an uncertain future…

  5. 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

  6. Care Barriers • Social Factors • Cultural Factors • Language Factors • Religious Factors • Economic Factors • Physiological Factors • Psychological Factors

  7. 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

  8. Quality vs. Quantity of Life

  9. 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

  10. The Pain of HIV • World Pain of HIV • Physical Pain of HIV • Emotional Pain of HIV • Spiritual Pain of HIV

  11. WORLD PAIN OF HIV

  12. ONE SMALL VIRUS...

  13. ONE LARGE WORLD…

  14. Adults and children estimated to be living with HIV/AIDS as of end 2002 Eastern Europe & Central Asia 1.2 million Western Europe 570 000 North America 980 000 East Asia & Pacific 1.2 million North Africa & Middle East 550 000 South & South-East Asia 6 million Caribbean 440 000 Sub-Saharan Africa 29.4 million Latin America 1.5 million Australia & New Zealand 15 000 Total: 42 million

  15. 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

  16. 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

  17. 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

  18. PHYSICAL PAIN OF HIV

  19. Physical Pain of HIV • Abdominal pain 25% • Peripheral Neuropathy 25% • Headache 25% • Tension 63% • Drug induced 20% • Migraine 17% • Muscle and Joint pain 25%

  20. 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

  21. EMOTIONAL PAIN OF HIV

  22. 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

  23. 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)

  24. 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?”

  25. 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

  26. Looking Good, Feeling BadThe disconnect…

  27. Emotional Pain of HIV • The “Follow-up” Burden • Frequent labs and other tests • Frequent office visits • Multiple sources of treatment and care • Refilling prescriptions

  28. 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

  29. 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?

  30. 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?

  31. 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.)

  32. The Treatment of the Emotional Pain of HIV • Treat or Refer; But Do Something! • Anti-anxiety agents • Antidepressants • Psychotherapy • Individual • Group

  33. The Treatment of the Emotional Pain of HIV • Behavioral Therapies • Hypnosis • Biofeedback • Jacobson Progressive Relaxation • Cognitive Behavioral Management

  34. SPIRITUAL PAIN OF HIV

  35. What Is Spirituality? It is NOT Religion!

  36. Spirituality Explored… • The Big Picture • Meaning beyond matter • What matters • Serenity • Inner self in continuity with known and unknown • Forgiveness

  37. 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

  38. Spirituality Explored… • The answer to all questions • Vulnerability • Cumulative wisdom of energy and nature • Vitality • Personal in definition • Justice • That which gives life

  39. Spirituality Explored… • Meaning • Water, warmth and light • Grace • The intersection of meaning and love • Power • Where we fit • Purpose

  40. Spirituality Explored… • Who I am • Why I am • Unique • Inherent • The boundary surrounding the illusion of control • Frightening

  41. Spirituality Explored… • Take a deep breath • Inspiration • Confidence in the inevitability of joy • Filling • Fulfilling • Fullness of life • Full of grace

  42. WHAT THEN IS IT? • It is core • It is essence • It is inspiration • IT IS LIFE

  43. Soul as in Sol. Sol as in Sun. Sun as in Light.

  44. Spiritual Sources • The patient • The provider • The partner/spouse • The family • The community of faith • The cosmos • The God of Creation

  45. Spiritual Pain of HIV • Purpose of life • Beyond ourselves • “Hole” in the heart • Guilt and Judgment • “Redemptive suffering” • Relationships with people and with God

  46. 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”)

  47. 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

  48. 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

  49. 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

  50. Prescription for Spiritual Wellness • Meaning in life involves finding the greatnesshidden inside of us. • Purpose in life is determined by how we use this greatness. • Faith is to believe that greatness can be embedded within the frailty of our own fallibility.

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