DR LIM KENG HUAT MBBS NSW AUST kenghlimyahoo
DR. LIM KENG HUAT MBBS (NSW, AUST) kenghlim@yahoo. com
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? )
“WHAT BOTHERS YOU MOST? ” • (American Journal Of Hospice & Palliative Medicine, vol 25, 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)
OPTIMAL HEALTH • Physical: Health within Illness, Embodiment • Emotional: Emotional Crisis, Stress management • Intellectual: Edu, Career • Social: Relate • Spiritual: Love, Hope, Charity •
• 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)
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
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)
Pattern of spiritual distress at the end of life in patients with lung cancer
• • 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-griefsigns-of-death)
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)
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.
• 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
SPIRITUALITY & RELIGION IS 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
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
• 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
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
CONCEPTUAL AREAS OF SPIRITUALITY PERSONHOOD TRANSCENDENCE SOUL SACRED SOCIOLOGY PSYCHOLOGY SPIRITUALITY THEOLOGY PSYCHE HUMANISM PHILOSOPHY
CONCEPTUAL AREAS OF RELIGION FRATERNITY MORALITY & ETHICS DOCTRINE RITUAL EXPERINENTIAL RELIGION BELIEVE IDENTITY & BELONGING ORGANIZATION SOCIOLOGY PHILOSOPHY ARTISTICS
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
FOUR TYPES OF DISCOURSES BELIEVE IN AFTER LIFE YES BELONG TO BELIEF SYSTEM YES NO FORMAL RELIGION (All Major religions) FOLK RELIGION (REUNION IN HEAVEN, CONTACT THROUGH MEDIUM SPIRITUALITY (NEW AGE, FEMINIST) NO EXPLICIT SECULARISM HUMANISM ATHEISM IMPLICIT SECULARISM (”WHEN YOU ARE DEAD, YOU ARE DEAD”) SPIRITUALITY
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
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)
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)
Unmet spiritual need cycle may result in increased demand service use
CONCEPTUAL FRAMEWORK FOR SPIRITUAL CARE • SPIRITUAL ORIENTATION • SPIRITUAL ISSUES • SPIRITUAL NEEDS HOMOSTASIS • SPIRITUAL PAIN • SPIRITUAL CARE
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”
CUES TO IDENTIFYING SPIRITUAL NEEDS & SPIRITUAL WELL BEING • SIGNS OF S. N • 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 • • • 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? ” • • •
SPIRITUAL SCREENING • “IMPROVING THE QUALITY OF SPIRITUAL CARE AS A DIMENSION OF PALLIATIVE CARE: CONSENSUS CONFERENCE” JOURNAL OF PALLIATIVE MEDICINE, 2009
SPIRITUAL ASSESSMENT (American Family Physician, 2001) • GENERAL PREREQUISITES: • SPIRITUAL SELF CARE & UNDERSTANDING • GOOD PHYSICIAN-PATIENT RAPPORT • APPROPRIATE TIMING OF DISCUSSSION • FORMAL ASSESSMENT
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-OFLIFE ISSUES • (spirituality & medical practice by Gowri Anandarajah, American Family Physician, Jan. 2001)
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 connection. We 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 religion. Do 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/practices. Do 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 issues. Has 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?
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
CHANGES, CHOICES AND MEANING OF LIVING & DYING MEANINGS HABITS (THOUGTHS, EMOTION) PHYSICAL & MENTAL CHANGES RELIGION & BELIEF HEALTH CHOICES MONEY RELATIONSHIP POLITICS ENVIRONMENT SUFFERING, MISHAPS TECHNOLOGY REALITY & TRUTH
PSYCHO-SPIRITUAL TRANSFORMATION OF DYING PROCESS • DENIAL ANGER BARGAINING DEPRESSION ACCEPTION DEPRESSION ACCEPTANCE ALIENATION ANXIETY DESPAIR “LETTING GO” DREAD OF ENGULFMENT CHAOS SURRENDER THE NEARING DEATH EXPERIENCE TRANSCENDENCE
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
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
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.
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.
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.
EXIT TURN: RIGHT TO HEAVEN LEFT TO HELL
CONCLUSION THANK YOU MEET YOU AT THE EXIT PASSPORT READY ?
"The five secrets you must discover before you die. " by John Izzo • http: //www. bkconnection. com/thefivesecret s/index. html • 1. BE TRUE TO YOURSELF • 2. LEAVE NO REGRETS • 3. BECOME LOVE • 4. LIVE THE MOMENT • 5. GIVE MORE THAN YOU TAKE
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