SPIRITUAL DIMENSION OF THE TERMINALLY ILL

1. SPIRITUAL DIMENSION OF THE TERMINALLY ILL DR. LIM KENG HUAT MBBS (NSW, AUST) kenghlim@yahoo.com

2. HOLISTIC HOSPICE CARE • ”THE MEASURE OF A HOSPICE PROGRAM IS IN THE QUALITY OF THE SPIRITUAL CARE THAT IT PROVIDES.” • DAME CECILY SAUNDER, ST. CHRISTOPHER’S HOSPICE, LONDON • 1. PHYSICAL • 2. PSYCHO-EMOTIONAL • 3.SOCIAL-FAMILIAL • 4.SPIRITUAL (this is least explored, and an often “ignored” dimension. WHY?)

3. “WHAT BOTHERS YOU MOST?” • (American Journal Of Hospice & Palliative Medicine, vol25, 2008) • Physical Distress 44% • Emotional, Spiritual, Existential problems 16% • Relationship problems 15% • Concerns about dying and Death 15% • (patients are more concern about pain and symptoms relief than in death anxiety problem)

4. OPTIMAL HEALTH • Physical: Health within Illness, Embodiment • Emotional: Emotional Crisis, Stress management • Intellectual: Edu, Career • Social: Relate • Spiritual: Love, Hope, Charity

5. HEALTH WITHIN ILLNESS • BIOLOGICAL BODY AND LIVED BODY (Maurice Merleau Ponty) • HEALTH AND ILLNESS ARE NOT BINARY OPPOSITES; THEY PERMEATE • IMPACT OF ILLNESS RE-ORIETATION TO A CHANGING WORLD AND A CHANGING SELF • RELATIONSHIP TO OUR BODY AND TO WORLD WE LIVE IN • (Illness: The Cry Of the Flesh by Havi Carel)

6. ANNALS OF INTERNAL MEDICINE 1997 EDITORIAL • PHYSICIANS LACKED COMMUNICATION SKILLS, ESP. IN DEALING WITH DYING PATIENTS. • DOCTORS SEE DEATH AS FAILURE OR DEFEAT • MEDICAL MODEL AGAINST PERSONAL, INDIVIDUAL MODEL • INCREASING TECHNICALIZATION & OFTEN OVER AGGRESSIVE TREATMENT OF DYING • DECREASING PERSONAL TOUCH

7. SEVEN CRITICAL JUNCTIONS IN THE CAREER OF A DYING PATIENT: 1965 GLASER & STRAUSS • TERMINAL ILLNESS: less than 6 months • MAKE PREPARATION FOR PATIENT’S DEATH: death seem “predictable and imminent” • “NOTHING MORE TO DO TO PREVENT DEATH” (Nothing for curative;More for palliative) • FINAL DESCENT (Dying trajectories – slow/fast) • Last HOURS (24 – 48 H) • DEATH WATCH • DEATH: irreversible circulation, respiration, consciousness)

8. Pattern of spiritual distress at the end of life in patients with lung cancer

9. Loss and Grief - Signs of Death • Difficulty swallowing • Disorientation • Loss of bowel and bladder control. • Breathing changes • Gurgling or rattling sounds. • Cold extremities • Sleepiness. • (http://www.extension.org/pages/9042/loss-and-grief-signs-of-death)

10. SPIRITUAL POTENTIAL • IT HAS TO BE AWAKENED, TRAINED AND PRACTICED, JUST AS TRAINING IS NEEDED TO DEVELOPED THE POTENTIAL TO DO WELL IN SPORTS, MAKE MUSIC, SING, OR DANCE. BUT EVEN THEN NOT ALL PEOPLE MAKE GOOD SINGERS OR DANCERS. • NOT EVERYBODY IS EQUALLY SPIRITUALLY GIFTED • (Ursula King: The Search for Spirituality: Our Global Quest for a Spiritual Life, 2008)

11. SPIRITUAL DIMENSIONS OF DYING IN PLURALIST SOCIETIES Palliative care is about helping people die well, but do we know how to “die well”? ---------------------------------- Friedrich Nietzche: “He who has a why to live, can bear almost any how.” Dr. Ira Byock: Dying well: expresses the sense of living and a sense of process.

12. EUTHANATOS (12 PRINCIPLES) • ACCESS TO INFORMATION/ EXPERTISE • CHOICE & CONTROL (when? Home? Who, Pain & Symptom, Spiritual & Psycho-emotional, Hospice, Advanced Directive, Prolongation or Terminate, PERMISSION) • DIGNITY, PRIVACY, MEANING OF LIFE, FORGIVENESS & RECONCILIATION

13. SPIRITUALITY & RELIGIONIS IT THE SAME? • EVERYONE HAS A SPIRITUAL DIMENSION, BUT MAY NOT BE EXPRESSED THROUGH A RELIGION, FORMAL OR INFORMAL, PHILOSOPHICAL OR OTHERWISE • SPIRITUALITY MOVES BEYOUND SCIENCE AND BEYOND INSTITUITIONAL RELIGIOUS AUTHORITY • WHO PROVIDES SUCH CARE? CERTIFIED CHAPLAINS, NURSES, DOCTORS, SOCIAL WORKERS, VOLUNTEERS

14. IS THE SEPARATION AN OPPORTUNITY, BURDEN, OR CONFUSION?(PALLIATIVE MEDICINE 2002, WALTER) ORGANIZATION PROBLEM: Who provides the Care? SENSITIVITY IN MULTI-FAITH COMMUNITIES/COUNTRIES Four BROAD DISCOURCES OF SPIRITUALITY: emphasis in Meaning Finding INADEQUATE TRAINING FOR COUNSELLORS

15. DEFINITIONS • RELIGION: RELIGARE (TO BIND); RELEGARE (TO COMTEMPLATE). RELIGION ; BIND TO A SET OF RULES; OR TO READ THE BOOK INORDER TO COMTEMPLATE HIS/HER BINDING • SPIRITUAL: SPIRITUS (LATIN: BREATH OF LIFE; ANIMATING FORCE OR ESSENCE • (A UNIVERSAL DEFINITION DIFFICULT:SOCIO-LINGUISTIC DESCRIPTION

16. SPIRITUALITY & WELL BEING( British MHA Care Group 2000) SPIRITUAL NEEDS OF PEOPLE: 1.The need to receive and give love 2.The need to sustain hope 3.The need to believe – faith/trust 4.The need for creativity – skills/talent 5.The need for peace 6*.The need for purpose and meaning in living, suffering and illnesses, and death 7*. “Spirituality of the senses” - cultivate the senses in new ways at time of diminishment of physical faculties

17. CONCEPTUAL AREAS OF SPIRITUALITY TRANSCENDENCE PERSONHOOD SOUL SACRED SPIRITUALITY PSYCHE HUMANISM SOCIOLOGY PSYCHOLOGY THEOLOGY PHILOSOPHY

18. CONCEPTUAL AREAS OF RELIGION DOCTRINE FRATERNITY MORALITY & ETHICS RITUAL EXPERINENTIAL RELIGION IDENTITY & BELONGING BELIEVE ORGANIZATION SOCIOLOGY ARTISTICS PHILOSOPHY

19. FOUR TYPES OF DISCOURSES • IT’S FOUR WAYS TO CONSTRUCT MEANING • NOT A TYPOLOGY OF PEOPLE BUT OF DISCOURSE; AN PERSON COULD HAVE MORE THAN ONE DISCOURSE • “SPIRITUAL OR BIOGRAPHICAL PAIN” (“My life has not added up in the way I would have wanted, and impending mortality means this is now too late to change.” • MOL IN DEATH IS KEY PART OF HOSPICE MOVEMENT STANCE AGAINST EUTHANASIA • SPIRITUAL MIDWIFERY

20. FOUR TYPES OF DISCOURSES BELIEVE IN AFTER LIFE BELONG TO BELIEF SYSTEM YES NO FORMAL RELIGION (All Major religions) EXPLICIT SECULARISM HUMANISM ATHEISM YES FOLK RELIGION (REUNION IN HEAVEN, CONTACT THROUGH MEDIUM SPIRITUALITY (NEW AGE, FEMINIST) IMPLICIT SECULARISM (”WHEN YOU ARE DEAD, YOU ARE DEAD”) SPIRITUALITY NO

21. MEANING & CHOICE IN DYING • “What oxygen is to the lungs, such is Hope to the MOL” Brunner • ILLNESS TRAJECTORY : PATIENT/FAMILY AS PRINCIPAL DECISION MAKER • REALISTIC HOPE AGAINST FALSE HOPE • LEGACY • SHORTER BETTER QUALITY AGAINST LONG SUFFERING

22. EVEN OBJECTS MAY BE MEANINGFUL TO THE DYING • RITUALS & POWER • MARKERS OF MEANINGS • FAMILIAL OBLIGATIONS – SOCIAL TIES, BOND, CONNECTIONS • SELF OF SELF LOCATED IN POSSESSIONS • COMMENMORATIVE • (Thus leaving the familiar home environment while dying may be very traumatic)

23. SPIRITUAL NEEDS & SPIRITUAL CARE OF THE DYING • SN: ARE THE NEEDS TO SEARCH FOR MEANING, PURPOSE, OR VALUES IN LIVING, EITHER VIA A RELIGION, OR SOME OTHER BELIEF SYSTEM. • SC: IS RECOGNISING, ATTENDING & RESPONDING TO SUCH NEEDS AND EXPECTATIONS. It involves understanding of suffering, compassion, love, listening, encouragement, counseling. • (Palliative Medicine 2004, pages 39-45, by Scott A Murray, some modifications)

24.  Unmet spiritual need cycle may result in increased demand and service use

25. CONCEPTUAL FRAMEWORK FOR SPIRITUAL CARE • SPIRITUAL ORIENTATION • SPIRITUAL ISSUES • SPIRITUAL NEEDS HOMOSTASIS • SPIRITUAL PAIN • SPIRITUAL CARE • SPIRITUAL ORIENTATION • SPIRITUAL ISSUES • SPIRITUAL NEEDS HOMOSTASIS • SPIRITUAL PAIN • SPIRITUAL CARE

26. WHAT ARE YOUR GOALS FOR SPIRITUAL CARE? • ALLEVIATE DEATH ANXIETY &COPING WITH LONELINESS • PROMOTE MEANING, PERSONAL WORTH AND HOPE • INCREASE QUALITY OF LIFE • PROVIDE COMFORT AND SOCIAL SUPPORT • RELIGIOUS OR SPIRITUAL CONCERNS • HELPS TO REALISE CLIENT’S “BUCKET LIST”

27. SIGNS OF S.N EXPRESSING FRUSTRATION, FEAR, DOUBT,DESPAIR FEELING LIFE NOT WORTHWHILE FEELING ISOLATED & UNSUPPORTED FEELING USELESS LACKING IN CONFIDENCE RELATIONSHIP PROBLEMS FEELING LOSING CONTROL ASKING: “WHERE DO I FIT IN?” “WHAT HAVE I DONE TO DESERVE THIS?” SIGNS OF S.W-B INNER PEACE & HARMONY HAVING HOPE,GOALS & AMBITIONS SOCIAL LIFE & PLACE IN COMMUNITY RETAINED UNIQUENESS & INDI., DIGNITY FEELING VALUE COPING & SHARING EMOTIONS ABILITY TO COMMUNICATE WITH TRUTH & HONESTY ABILITY TO PRACTICE CHOICE OF RELIGION; FINDING MEANING CUES TO IDENTIFYING SPIRITUAL NEEDS & SPIRITUAL WELL BEING

28. SPIRITUAL SCREENING • “IMPROVING THE QUALITY OF SPIRITUAL CARE AS A DIMENSION OF PALLIATIVE CARE: CONSENSUS CONFERENCE” JOURNAL OF PALLIATIVE MEDICINE, 2009

29. SPIRITUAL ASSESSMENT(American Family Physician, 2001) • GENERAL PREREQUISITES: • SPIRITUAL SELF CARE & UNDERSTANDING • GOOD PHYSICIAN-PATIENT RAPPORT • APPROPRIATE TIMING OF DISCUSSSION • FORMAL ASSESSMENT

30. SPIRITUAL ASSESSMENT:HOPE QUESTION • H: SOURCE OF HOPE:MEANING, CONFORT, STRENGTH,PEACE,LOVE & CONNECTION • O: ORIGINAL RELIGION • P: PERSONAL SPIRITUALITY & PRACTICE • E: EFFECT ON MEDICAL CARE AT END-OF-LIFE ISSUES • (spirituality & medical practice by Gowri Anandarajah, American Family Physician, Jan. 2001)

31. HOPE APPROACH TO SPIRITUAL ASSESSMENT (AFP,2001) • Examples of Questions for the HOPE Approach to Spiritual Assessment H: Sources of hope, meaning, comfort, strength, peace, love and connectionWe have been discussing your support systems. I was wondering, what is there in your life that gives you internal support?What are your sources of hope, strength, comfort and peace?What do you hold on to during difficult times?What sustains you and keeps you going?For some people, their religious or spiritual beliefs act as a source of comfort and strength in dealing with life's ups and downs; is this true for you? If the answer is "Yes," go on to O and P questions. If the answer is "No," consider asking: Was it ever? If the answer is "Yes," ask: What changed?O: Organized religionDo you consider yourself part of an organized religion?How important is this to you?What aspects of your religion are helpful and not so helpful to you?Are you part of a religious or spiritual community? Does it help you? How?P: Personal spirituality/practicesDo you have personal spiritual beliefs that are independent of organized religion? What are they?Do you believe in God? What kind of relationship do you have with God? What aspects of your spirituality or spiritual practices do you find most helpful to you personally? (e.g., prayer, meditation, reading scripture, attending religious services, listening to music, hiking, communing with nature)E: Effects on medical care and end-of-life issuesHas being sick (or your current situation) affected your ability to do the things that usually help you spiritually? (Or affected your relationship with God?)As a doctor, is there anything that I can do to help you access the resources that usually help you?Are you worried about any conflicts between your beliefs and your medical situation/care/decisions?Would it be helpful for you to speak to a clinical chaplain/community spiritual leader?Are there any specific practices or restrictions I should know about in providing your medical care? (e.g., dietary restrictions, use of blood products)If the patient is dying: How do your beliefs affect the kind of medical care you would like me to provide over the next few days/weeks/months?

32. BECKER’S PARADOX & DUALITY • BRAIN/MIND COULD NOT COGNISE ITS OWN END OR NULLITY, SEEK TRANSCENDENCE/AFTER LIFE • DEATH ANXIETY & DENIAL • THIS PARADOX UNDERLIES THE SPIRITUAL NEEDS OF THE DYING & LIVING – SEARCHING FOR MOL & DEATH, MEANINGFUL LIVING, FINDING HOPE BEYOND THE GRAVE

33. CHANGES, CHOICES AND MEANING OF LIVING & DYING PHYSICAL & MENTAL RELIGION & BELIEF MEANINGS HABITS (THOUGTHS, EMOTION) CHANGES HEALTH MONEY CHOICES RELATIONSHIP POLITICS REALITY & TRUTH SUFFERING,MISHAPS TECHNOLOGY ENVIRONMENT

34. PSYCHO-SPIRITUAL TRANSFORMATION OF DYING PROCESS • DENIAL ANGER BARGAINING DEPRESSION ACCEPTANCE DENIAL ANGER BARGAINING DEPRESSION ACCEPTION CHAOS ALIENATION ANXIETY DESPAIR “LETTING GO” DREAD OF ENGULFMENT SURRENDER THE NEARING DEATH EXPERIENCE TRANSCENDENCE

35. MANAGEMENT TEACH RELAXATION TECHNIQUE OFFER PRESENCE, UNDERSTANDING ACCEPTANCE & COMPASSION EMPOWERING INTERNAL & EXTERNAL RESOURCES (RELIGION/FAITH, MEDITATION, TAI QI EXERCISES, MUSIC, PAINTING, POETRY) PROMOTE SELF GROWTH OR INSIGHT INSTEAD OF SPECIFIC PROBLEM SOLVING USE SPIRITUALITY TO MODIFY TREATMENT PLAN

36. MAYBE MAYBE We dance from this elegant place discarding our vulnerable bodies like old work clothes at the end of the day MAYBE essence enters the air flying like monarchs in migration passed roses and river older than wood wizards MAYBE meaning and magic stand up from the landscape like summer lightning and for one holy moment ALL questions have answers, all journey’s a home all living the roundness and warmth of a stone clutched tight in the hand OR MAYBE like four-year-old we drop everything and simply run forward dazzled again! ROBERTA DE KAY

37. THE LAST FLICKERING FLAME • Soon to strip off my working clothes; • In nakedness, the freedom flows. • What to wear for my retirement? • Not to trap in re-dressing similar garment. • In nudity, I reflect myself in life’s mirror; • I look at an aging body with horror. • The burnt candle flickers …. • Blow it off, if the fire is without fervor.

38. A Reply to Flickering Light: • It’s easy to light up another candle; • Become a devil to live with an angel. • Even with the flickering flame; • Entitle to some fun with end-of-life game. • The reflection is indeed true; • Enjoy some sweet dessert before final adieu.

39. BLESS • Bless: do not blow …; • Holiness even when the glow is low. • The body is withering away; • You pray and still feel betray. • The fire will be gone; • Memories and identities become icon. • Learn about dying well; • Doubt and fear: do not dwell. • Grow with the process; • Give love until the final bless.

40. EXIT TURN: RIGHT TO HEAVEN LEFT TO HELL

41. CONCLUSION

42. "The five secrets you must discover before you die."by John Izzo • http://www.bkconnection.com/thefivesecrets/index.html • 1.BE TRUE TO YOURSELF • 2.LEAVE NO REGRETS • 3.BECOME LOVE • 4.LIVE THE MOMENT • 5.GIVE MORE THAN YOU TAKE